Ok DL Doctors & Nurses, Diagnose Me

Your brain has become so large that it's leaking out your eyeballs and nose.

I am just kidding. go see a doctor, ffs, good luck.

It could be something completely weird. My dad had a fungus growing in his ears and it spread throughout his sinus cavity. The world is strange, get your head checked and every best luck to you.

I hate when strychnine is used over time in a torture dose.

Not that the outcome ever is in doubt.

Good luck, OP!

Pregnant.

Could be an infected tooth that has spread. Have they done blood work to see if you have an infection?

Infections can also hide out in obscure pockets of the sinus and even the tip of the nose. They can be very hard to track down and fully eradicate with antibiotics. Not sure if they go in and scrape it out or what.

If you are not in an HMO, get a second opinion stat. The dentist won’t be able to do much but why live with the suffering? Pay out of pocket if you have it.

I learned the hard way recently with a foot issue. Three doctors later I finally have an answer.

brass tacks you need to get a diagnosis and then attention for whatever it is.

Can I have your stuff?

Do you have allergies?

I had a similar experience years ago, minus the numb teeth & tenderness around the eye socket. When what was originally thought to be a sinus infection wouldn't go away my PCP sent me to an ENT who eventually sent me to an allergist and it ended up being a reaction to mold exposure.

I stayed my uncle's house for two months back in 2009, his house had been empty for a year but one of the toilets had been running all that time and created a mold situation. Fortunately I was only staying there while I waited to move into a new apartment because moving was the only thing that provided relief.

A couple years ago I kept going through very painful rounds of head pain, but I couldn't tell if it was a bad tooth, or a sinus infection or advanced brain cancer the pain was so bad.

I got an ENT doctor to prescribe me antibiotics and prednisone, but after a more thorough exam he told me I just had very narrow sinuses and they were inflamed, which could be for a number of reasons including allergens or stress. I was in such pain I was grabbing any painkillers I had on hand and suddenly one actually worked, Aleve, which I believe is naproxen.

It never worked for anything ever, but helped with my inflamed sinuses. Who knew?

Are you still with us, OP?

Do you live in a state with medical marijuana? I would buy some edibles with cbd and that should take your pain away. sorry for your issues

Could it be Shingles, OP? My Dad has similar issues and was diagnosed with Shingles. His was on the left side of his head.

Seems nerve related. Could be infection of viral or bacterial variety (or shingles) or other underlying cause. If you don't want to wait and can afford the ER co-pay go to the ER and talk about numbness.

Steroids can mask or even facilitate infections. Your prednisone may have triggered a sinus or dental infection. Your ENT should have caught this, but the CT may be necessary.

How long have you been on prednisone? Side effects include:

Elevated pressure in the eyes (glaucoma)

Clouding of the lens in one or both eyes (cataracts)

A round face (moon face)

High blood sugar, which can trigger or worsen diabetes

Increased risk of infections, especially with common bacterial, viral and fungal microorganisms

Thinning bones (osteoporosis) and fractures Suppressed adrenal gland hormone production that may result in a variety of signs and symptoms, including severe fatigue, loss of appetite, nausea and muscle weakness Thin skin, bruising and slower wound healing

Sounds like rabies. Drink some water because rabies makes you thirsty.

You got a love hangover!

^ Sounds more like a regular hangover...

WHET Op?

Prednisone was my first thought too. Not sure how long it takes to totally leave your system. Get a second opinion. Try NOT to go the ER. Urgent care is good enough. I went to the ER with a bad cough a few years ago, was given a CT scan and my (very good until it wasn't) insurance wouldn't pay for it because it wasn't authorized in advance. It cost almost 6 grand.

OP the progressive numbness is very concerning along with this pain. YOu've done anti biotics, you've seen ENT, Dentist, etc. Now go to the ER. Tell them you think your having a stroke. That way you don't have to sit there. They will prioritize you. Now. Once they get you into an examining room, tell them of the umbness and the pain, and the problems with your eye. Period. Then let them start doing tests. Sometimes we say too much to an examining physician and while you have to be truthful and open about symptoms, don't blurt them out all at once because it will definnitely affect their course of action.

[quote]ENT said if the Imitrex didn't work, we would do a CT scan of my head, but the first appt isn't for 2 weeks.

You need to get that scan done, because you clearly have a brain tumor. You can always go to the ER…tell them you’re having the worst headache of your life, and you’ll get scanned stat.

Hmmm might be Bells Palsy... doesn't that cause numbness? Anyway OP let us know how you are!

Guillain Barre Syndrome. Check it out.

Clearly, you have untreated syphilis.

Next patient please.

I agree with R20 - go to the ER. Something's fishy about that insurance issue, R19. If you went to the ER, and the ER physician deemed your CT to be urgently needed, it should have been covered as part of the visit even if you weren't admitted.

OP, you can call your insurance company to learn the details of emergency coverage if it makes you feel better, but you'll get a CT, and perhaps a neuro and 2nd ENT consult out of an ER visit if you play your cards right. Speaking of which:

[quote]Sometimes we say too much to an examining physician and while you have to be truthful and open about symptoms, don't blurt them out all at once because it will definnitely affect their course of action.

Absolutely correct, and more patients should understand this. If you go in and blab a long history of undiagnosed pain, different meds, different docs with different opinions, you will immediately be pigeonholed as either (a) a hypochondriac neurotic crank or (b) a drug-seeking junkie. Neither will result in your feeling better. Tell the truth, but be judicious and edit how much you say. A key thing is to emphasize that the pain is suddenly worse and excruciating. Sudden, severe head pain is almost as good as chest pain for getting quick attention in the Emergency Department, especially when accompanied by numbness.

Be careful what you wish for, though - you may end up being admitted. That might not be such a bad thing, since the docs will be strongly motivated to do a bunch of tests and get a bunch of consults, which is what you need now.

OK: prednisone and antihistamines plus a side of Imitrex. You have dried your sinus passages and blood vessels that hydrate them to Sahara levels, hence pain. Saline spray to see if that helps. A least it wont be one more chemical to mix up the picture

To add on to R25 You have to help them to see you as important and in need- not just another widget to be moved along.

Sounds like an abscessed sinus infection.

[quote]Your ENT should have caught this, but the CT may be necessary.

I got the order of things wrong, I did have a CT scan as fast as they could get me in. My ENT is an excellent doctor, and a good listener.

[quote] You need to get that scan done, because you clearly have a brain tumor.

OP here. R21 wins the ham. It actually is a brain tumor. I just got home from the hospital. I have to have a specific test early next week that will determine the kind of neurosurgery I need, but it's actually pretty serious. I appreciate everyone chiming in and trying to help and offer advice. I couldn't check in because all I had on me was my phone, not even a charger and I was trying to save my power. Had an MRI and CT scan while there.

Not gonna lie, it's been a big shock. Not really sure where I am right now, headspace-wise. I guess still trying to process it.

OP thanks for letting us know. I sincerely hope everything works out. I am so glad they figured out what's going on. Or at least they're closing in on it. When y ou said numbness and the pain was worsening I had a bad feeling about it. So I am very glad you followed up. A ot of us want to help you (moral support) to get through this. Take care and please let us know how it's going, OK.

Dang.

:(

Thank you, R31. I sincerely appreciate that. Hoping it is survivable, as I have too many things I still want to accomplish before I shove off.

And as crazy as this place is, I definitely feel like it's a community, so it's very helpful to know there are people out there wishing you well. That might sound odd, but I have always found it a fun and welcoming place, no matter the snark.

So sorry OP but glad you went to the ER and they have a course of action and treatment for you. Best wishes for your recovery.

Yes, glad you went in - getting this figured out early is a real plus.

Advanced Mental Retardation (AMR). Sad last days...

So sorry OP, but now that you have a diagnosis in hand, you can hit the ground running. Best of luck with treatment.

The earlier they catch it, the more they can do about it OP. A brain tumor isn't an automatic death sentence anymore. I hope everything goes well

My next door neighbor has one and it's malignant. He told me they have finally diagnosed what kind it is and he is very lucky because they said it is somthine simple they can deal with it through Radiation, chemo and possibly no surgery. He is in g ood spirits and optimistic. To celebrate, he just bought a brand new Jaguar.

R30, I hope it is something that can easily be taken care of.

Damn OP this news sucks and I am sorry that you have to go through this but it’s nothing medicine can’t treat so stay strong and forge ahead. 🤗

OP here. I've been gathering more information today. A friend's husband is in the scientific research something or other (and has a medical degree) and another friend's father is a retired neurosurgeon. It's been immensely helpful speaking to both of them, as they have helped clarify much for me. However, I am now in the anger phase for one big reason. Six 1/2 years ago, I was diagnosed w/ colon cancer and had surgery and went through chemo. Every year thereafter, I got a PET scan (for the first four years) and then a CT scan, of my torso (chest to upper thigh). The theory being that if it comes back, colon cancer usually recurs in lungs or liver.

Of course, there have to be tests done, but both say that it's likely this is not a wholly new cancer and is a metastatis of the colon cancer. And I want to know why the fuck, if that was possible, they were not including my head in the yearly scan. FFS, I'm on the goddamn table already. Shove me through the fucking machine another 18 inches. I can't let that take over right now, but man, I did everything I was supposed to do when I first got cancer, and was diligent as hell and have stayed diligent for these 6 years and I'm really upset that something stupid like this (likely driven by insurance issues, even though I have good insurance) caused the cancer to come back.

AIDS

Damn OP. Yes, you did everything right. I am praying it pays off for you. Please keep us posted. We are all in this with you.

[quote] My next door neighbor has one and it's malignant. He told me they have finally diagnosed what kind it is and he is very lucky because they said it is somthine simple they can deal with it through Radiation, chemo and possibly no surgery. He is in g ood spirits and optimistic. To celebrate, he just bought a brand new Jaguar.

I'm happy to hear this. Thank you for sharing. My friend's dad said to ask about something called a gamma knife, which is a radiation treatment that is in lieu of surgery. He said he doesn't know for sure that that would be the way to go because he hasn't reviewed my scans, but said- if you mention it and your surgeon can't tell you exactly why it would not be the right way to go, find another surgeon. I've already also found another neurosurgeon I would like to see for a 2nd opinion before I make any decision.

[quote] It cost almost 6 grand.

Make a payment plan with the hospital and pay them $10 a month.

I was joking with my friend that if this was going to happen, why not six months earlier? When I had the colon cancer, it was early in the calendar year and I hit my max payout in March. For the next 8 months, everything was free. By October, I was looking to get a hysterectomy (even though I'm a guy) just because I wouldn't have to pay for it. But it's already September, so I'll only have maybe a month to get that nose job I've always wanted.

Medicine is all decision tree driven these days. What is the most likely diagnosis given the symptoms present? = treatment intervention. If that doesn't work, try the next most likely dx/treatment.

The same holds true for post cancer monitoring: where is the reoccurrence most likely to occur = scan those areas.

Yes, R48, I have also been told that, and I get it, up to a point. I don't know all of the justifications for how they decided to handle my post-care yet, but it seems like it would be not much more to scan me tip to toe rather than just the trunk. Or at least head to balls.

Sounds like recurrent migraines and only codeine would cure them. If you were in the UK you could stroll into a pharmacy and get a pack of 30 Solpadeine Max for $10 but I guess you will have to suffer.

Thanks for your expert opinion on brain tumor treatment R50.

Fuck off you spaz, R51. I didn't read the whole thread. Sounds like you're a dead man walking but I see you're going to milk it on this thread for months to come.

OP -

Thoughts and well wishes sent your way. If up to it, please keep us posted as to how you are getting on.

We care.❤️

[quote] Fuck off you spaz, [R51]. I didn't read the whole thread. Sounds like you're a dead man walking but I see you're going to milk it on this thread for months to come.

That actually wasn't me, R52. But given your response to it, I am firmly Team R51.

OP, do you have a fever?

[quote] I can't let that take over right now, but man, I did everything I was supposed to do when I first got cancer, and was diligent as hell and have stayed diligent for these 6 years and I'm really upset that something stupid like this (likely driven by insurance issues, even though I have good insurance) caused the cancer to come back.

Don’t be hard on yourself, or the circumstances, OP. If this is a metastatic lesion in the brain (from your colon), know that brain mets can be a bit of a wild card, so to speak, and liver/lung mets are much more common.

Regardless, brain mets can often be easier to treat than types of cerebral malignancy. Since there is a discrete tissue (of origin) difference in the lesion, they can be “separated” from the brain tissue rather than entwining around significant brain structures.

Obviously don’t know the specifics of your case but there are options, and I am holding fast to a smooth and positive outcome for you.

Hang in there and know that you/they have done everything by the book.

Thank you, R53. : )

Damn r52. Just damn.

Im not an MD, but I previously worked with cancer patients on clinical trials. Typically for a trial they do a brain scan at the beginning of the study then not again unless the doc feels its clinically necessary (i.e. usually that means symptoms). And even just doing the brain scan to begin with also depends on the clinical trial and type of cancer. They dont always look at the brain unless they think it might spread there.

Gamma knife is a new highly effective very targeted radiation. Think multiple tiny focused laser beams. I believe its most effective for brain mets and smaller tumours (up to a few cm in size). Definitely ask about it.

I know this place can be snarky and bitchy, but its also a nice community that has helped give a much needed laugh more times than I can count. I wish you lots of love and a speedy recovery 💚

R52 needs to be blocked by all of us, because he is just a complete shit. I hope nothing bad will happen to him, becauseh he will get the kind of symapthy hesends out into the world.

Agree, r60, and blocked r52.

Jesus, OP. I’m sorry for your troubles, but at least you have a diagnosis now. It’s been said already but please keep us informed, we only pretend to be heartless bitches and want you to get well soon.

[quote] It’s been said already but please keep us informed, we only pretend to be heartless bitches and want you to get well soon.

It's always appreciated to hear, so thank you.

I am ready to hit the ground running tomorrow morning. I found another surgeon who I want to make an appt with for a 2nd opinion, and I am locked in and focused. And yes, as long as people don't get sick of hearing about it, I'm happy to chime in with updates now and then (and of course carry on my snarkery in many other threads)!

OP ~ Please keep us posted ~ I hope that your week isn’t totally stressful and scary ~ sending you good positive thoughts!

Been a busy week of consultations. Met with two diff neurosurgeons, a radiation oncologist, and an ophthalmologist and I'm more confused than I was before. Everyone has a different opinion on how to approach removing the tumor and no one has said anything uniform other than it needs to come out (yeah, duh). So I am now meeting with a third neurosurgery team this week to ostensibly be the tie-breaker, and an ocular plastic surgeon. I'm exhausted, but I suppose the good thing is I'm far too busy to wallow.

One of the more fascinating (and amusing) bits of info about one of the surgeries I've gleaned is that they make the incision above your hairline and because they go up so high (to hide the scar) they have to pull up your skin. I didn't think much of that, but a friend of mine's father just had a craniotomy because he had a bad fall. So she was showing me photos of his surgery right after, and then how it's healed. And I said to her- How old is your dad? And she said he was 80. I told her- Holy shit, he looks fantastic. I would have pegged him at about 62. And she said- It's because he pretty much got a face lift with the surgery! So I suppose I have that to look forward to, though, truth be told, I don't really need one. If they're gonna help me out cosmetically, I'd rather they go in through my neck and lift that, since that's the only place on my face that could use a little sprucing (unless they can figure out how to permanently get my beard to stop growing in grey).

You may be very lucky! Time will tell, but since you are totally coherent and haven't been falling down, etc., you could be a lot worse off. Glioblastomas have poor prognoses, but some brain tumors are benign and potentially dangerous only because of how they create pressure. I've heard of a lot of people who've had brain tumors that were removed and they jaut went on with their lives with no or few ill effects.

I am really sorry about this, OP.

As I read your posts, I assumed something was compressing the nerve and my mind went to a tumor or a dental abscess. Both could be life threatening but both also can cause little harm if identified and removed before they cause harm.

I wish you the best of luck. Please keep us updated.

I hope someone is accompanying you to these doc apts, OP. Someone to take notes. Someone with whom you can review all the info later.

Do you have access to a fine medical center? Sometimes it's wise to pack up for Sloan Kettering, Anderson, Stanford, etc rather than stay local.

OP so sorry to hear what you're going through, but at least it's been identified and you're taking action.

DL can have havens of compassion here and there- the last one was with Brian Nash, who had tongue cancer. The first 3 threads seem to be gone, but I found the 4th, and you can see how genteel everyone was.

I remember those threads, R68. I chimed in now and then, as I had already tangled with cancer once.

Yes, I am in Los Angeles, so I have Cedars, UCLA and other hospitals, and I am interviewing with all of them before I make a decision.

A friend suggested that I maybe go to NYC for care, but having lived in NYC, I know how difficult it can be to navigate if you're ill, and with the added struggle of Covid (and not having a place to stay), I'd rather be at home. But yes, it is a good idea to make sure you feel good about the care available to you where you are. And one of my new issues with the tumor is persistent lightheadedness (not dizziness). I don't know how bad it will get, so not having to navigate stairs and being able to just jump into an Uber if I can't drive is probably the easiest for my condition. (I have friends who will drive me places, but I don't like to impose.)

OP you or someone you trust needs to research the doctors and the hospitals and the surgeries that are proposed. Check out success rates. Check out ratings especially the low ratings and criticisms. And most of all think really hard about the people you have met during your consults. Which ones do you feel most comfortable with? It's really important. Who was the most forthcoming. Who was the most realistic?

[quote] Which ones do you feel most comfortable with? It's really important. Who was the most forthcoming. Who was the most realistic?

Would second this, OP. If there are words that stick with me following my neurosurg training, one mentor’s words ring true: “You can teach a monkey to operate”. And while it IS brain surgery, it is nonetheless surgery. Short of a deficit (akin to the chairman of a neurosurg department [not in LA!] who was renown for his hand tremor), surgical techniques are not the end all be all. These techniques can be taught and vary based on preferences, background and patient presentation.

What cannot be imparted are qualities such as discernment, judgment, awareness, empathy and a fierce desire to be the patient’s best ally and aid throughout the process.

Whenever patients seem overwhelmed, I remind them to listen to their intuition and trust their judgment. If they find this difficult, spent some quiet time alone and “tune in” to the “inner landscape”. Whilst a surgeon is an ally, they DO NOT heal anyone’s body. Ultimately, the healing comes from within via each patient. I’ve seen over and over again that corporeal bodies wish/aim to return to their “natural states”.

Sounds as though you have options, OP, as to which way to proceed. Trust that things will become clearer as things unfold, and you will instinctively know which path to take which will be the ideal one for you.

[quote]I learned the hard way recently with a foot issue. Three doctors later I finally have an answer.

But do you still have a foot?

God Bless Us everyone!

Op, I'm in West Hollywood...should you ever need a ride anywhere, I would be most happy to try to help you out if I can.

Thank you R70 & R71 and I agree completely. The good news (if that's the correct phrase to use in this case) is that I have had cancer before, and so I have gone through the vetting process and researching and all of that and am employing the exact same strategy here. But it's a great piece of advice and to hear it from others helps me to feel like I'm not being "hypochondriacal" so I appreciate it.

The last time (which was colon) the surgery was very straightforward and the three surgeons I interviewed all were planning on taking the exact same route, so to speak. So it was a decision of who I felt most confident in. I crossed off one guy immediately because I thought he was a terrible doctor (and his reviews actually backed that up). I was going to go with the Cedars surgeon because I thought his bedside manner was a good as his skill. However he did not take my insurance. He actually said to me- don't let that deter you. I will only charge you what you would pay if I was in your network. But his office staff was so inept that I didn't trust it. I had visions of having the surgery and then wrangling with them over a $50K bill. So I chose the UCLA surgeon who was the head of that dept. Great surgeon, no so great bedside manner, but I needed him to cut out my cancer, not entertain me for tea.

These three surgeons I'm having a little more trouble getting reviews on, so I'll have to do a bit more digging.

I appreciate everyone's indulgence in listening on here. I don't really have any family now. (My mom died a couple years after my first cancer.) And while I have friends who are lovely, I also know that I have to be judicious in just how much I lean on them or bother them.

[quote] Op, I'm in West Hollywood...should you ever need a ride anywhere, I would be most happy to try to help you out if I can.

That is just about one of the nicest things I've ever seen on here, and I really appreciate it. Thank you for even putting that out there.

OP, will you go before a tumor board?

Only if I have an accompanist in my key.

OP, know that myself and others are rooting for you. Thank you for keeping us posted. Love and light to you and hoping your treatment brings some comfort.

Why are you prevaricating while the tumour grows?

Things went downhill pretty quickly and I wound up having surgery on Tuesday afternoon with the third surgeon I interviewed (and whom I was planning on choosing after meeting with him). They have already sent me home and I am meeting again with them in a week once the pathology is back so we can discuss the plan forward. Radiation is definitely in the cards, but not sure what else. Just by the look of it they think it's metastatic from my older colon cancer (which isn't impossible, but the odds were sure high). They were not able to remove the entire tumor because of the proximity.

I have to say that, for someone who just had a craniotomy, I feel surprisingly not terrible. A little headache pain, some jaw pain, and I packed on 7 pounds of fluid while I was there and have begun peeing it out in earnest all morning. (It had to be fluid because I've either fasted or barely eaten in the past three days and should have lost a few pounds.)

I'm scared. I just have a feeling the prognosis is not going to be good. I don't want to doom things, of course, but you know those deep gut feelings are seldom wrong. I'm trying to just not think about it. And I'm glad I have a week of time before I know for sure.

OP I don’t have anything to offer but sending positive vibes to you.

[quote]I just have a feeling the prognosis is not going to be good. I don't want to doom things, of course, but you know those deep gut feelings are seldom wrong

Personally, when it comes to medical ailments, I've found that deep gut feelings are seldom right.

I'm glad you're home and feeling okay and I'm going to think positive on your behalf!

My best friend (female, age 73) had a sudden seizure out of nowhere last July. She was diagnosed with a malignant glioblastoma shortly thereafter. I thought she would live to see Christmas, however, after surgery, oral chemo (which she took at home, no infusions needed) and daily radiation for one month, she beat it. She just had an MRI last week that showed no evidence of cancer ANYWHERE. She will be going for scans every 3 months for the forseeable future, which is good.

Whoever said upthread that cancer treatment is not what is used to be is exactly right. Keep hope alive, OP - best wishes to you.

**correction** "wouldn't live to see Christmas" -

Thank you, R84. That's an amazing story. Tell your friend I wish her well and am thrilled she's doing so well. : )

Thank you, I will. During her surgery they were not able to get all of the tumor either due to proximity issues, and in fact the surgery revealed another tiny one growing in another spot that they were able to get. Radiation and chemo clearly did the trick getting it all.

She has been in recovery for over 25 years, and one thing she told me she did I found very uplifting: every day, when she took her oral chemo, she would hold the pill in her hand for a few seconds, and tell herself, "This pill is MY FRIEND and it is going to HELP ME." Like a mantra, I guess. It worked for her - hopefully your path will be equally successful.

Glad you survived the surgery, and that they were able to remove most of the tumor. Now, it's just a matter of knocking out the rest of it.

Take some Tylenol

I’m busy addressing visible signs of aging.

You sound good for such recent head surgery, OP.

I went through something similar last year when it looked like testicular cancer had spread to my abdomen.

I decided to not be scared. It was ruining my days. I hope you can find a way to do this as well OP as you move through your treatment. You're going to meet some very nice people during this experience.

Nasal worms

OP here's what I know about "gut feelings." Most of the time, in a crisis, those gut feelings are the sum total of fears and anxieties we have. it's also the way our subconscious and our emotional self "prepares for the worst." even if the worst outcome is in doubt. I'm praying for you. ANd yes, from a fatalist's point of view, things coulld go very badly. But there's a strong possibility that things may work out well. So hang in there, and try to banish your anxieties by just taking it a day at a time. Sorry for all the cliches, but I don't know how to say it any better.

Thank you for the update.

We are here for you.

No one knows how it'll go, either the prognosis or the outcome. So just breathe through it.

I think I mentioned it above but in case I didn't, a friend's mother was diagnosed with stage four lung cancer laat fall, not due to smoking. The prognosis for stage four lung cancer is bleak. She had an experimental gene therapy and a year later, the tumor has disappeared.

Her diagnosis followed trouble catching her breath, which was her only symptom. She is off oxygen now and breathing fine.

The doctors told her that the expected prognosis from this point is that she will be totally well until she is not, and at that time, she will probably have rapidly growing stage-four cancer and not live long once it is discovered. They don't know why, but that's how this treatment's effects seem to go. But it's still experimental and they don't know for sure how it will work out.

You don't know, so don't torment yourself assuming the worst. If you did only have a short amount of time left, you wouldn't want to spend it panicking. What a horrible feeling.

Last thing: I read years ago that most people—not even just people with anxiety disorders but most people—assume worst-case outcomes and spend a majority of our time worrying about them. And only in a very small percentage, single digits, of cases does the worst-case scenario happen. And when the worst does happen, it's often sudden and unanticipated. So again, it's not reasonable to assume the worst. So as not to take up too much space in this post, I will post a short story about my parents below.

My mom lost weight for YEARS due to chronic diarrhea. No doctor was concerned. My parents were. She was emaciated and in terrible pain. Doctors would not admit her to the hospital for lab work. She eventually was so weak, she fell in the bathroom and was knocked almost unconscious when she hit her head on the toilet. My dad was lectured by the ICU charge doctor for letting my mon become so malnourished. She was in the hospital from early December through the first week of January. Every other day, she had a great prognosis. She was declared "actively dying" the first week of January and came home and finally died a week later. She was 66.

My dad always expected she would outlive him by decades because of his family history. He spent his entire adult life saving and preparing for her to be taken care of after he died. Every man in his family has died before or around age 60.

He's 74 now. While my mom was still with us, he was diagnosed with an abdominal aortic aneuerysm and he had a minimally invasive surgery that corrected it. Uncorrected, it's something like a 98% chance of death if it ruptures.

The year after my mom died, they told my dad he would need the invasive surgery. It was very high risk. I took a week off work and went to his house to be with him. The night before the surgery, his surgeon called at 9pm and said "I have a bad feeling about the surgery. Can I cancel it?" My dad was baffled and we agreed. (He wanted my opinion.) We thought no surgeon in that state of mind should perform surgery. His surgeon met with a doctor on the west coast. They came up with an experimental alternative surgery that was much less invasive. It worked. His aneurysm is gone.

The surgery he was scheduled for has a 50% survival rate. The doctor said he would have to sacrifice a kidney for sure, he may lose part of his lung function, and there was some chance of partial or full paralysis below the waist.

Now my dad is absolutely gobsmacked he was going to have that done and said now he would choose not to if they told him he had to to save his life, and I understand why. I wouldn't either.

Why am I writing all this?

Many doctors are wrong a lot. People die because of it. My mother did.

Many doctors are both wrong and right. Some are bold enough to acknowledge they can be wrong and recalibrate. My father is alive because of it.

Some conventional medical knowledge and processes fail and some alternatives really work.

Get out of the most likely prognosis way of thinking and cheer yourself on. We are all cheering you on.

Goodness, R95 - what a grim story. Did your mother have undiagnosed bowel cancer? Glad your dad made it.

R96 No. All those years, they kept telling her she had irritable bowel syndrome. "Go home and take Immodium."

In the end—at the very end—they said it was Crohn's disease.

Can you take your self-absorbed family diarrhea tales outside? This thread is meant to support OP.

OP here, and this thread is open to anyone who wants to share any stories that they like if they are on topic or thought to be helpful. (Not that I or anyone else can stop anybody from posting whatever they like, but I'll flex for attention.) : )

I'm up at 4am because it is not comfortable lying down right now. I just took some Advil and hopefully I'll head back to sleep in a few hours. I was investigating my surgery reports and discharge notices and all that online earlier and was rather surprised at some of the things that I have yet to be told. Maybe they figured I would be naturally curious. I don't know.

They put a mesh patch in instead of the small piece of skull they took out, apparently because the skull was too thin due to the invasion of the tumor. I know need to know what that means for long term. Do those things last forever? Am I going to set off every metal detector? Can I have tests? (I guess I must be able to- they gave me a post-surgery MRI in the hospital.)

Also found out they tested part of the tumor already and know it's metastatic. Why the dog and pony show about needing to wait a week? I was also supposed to have a PET scan later today, but my insurance turned it down because I had a CT of the torso in the ER 2 weeks ago and they don't think I need a PET scan, so that was canceled I need my surgeon's office to call my insurance and hopefully get that overturned, especially now that we know it's metastatic. The CT was clear, but CTs suck in comparison to PET scans.

I just want to sleep comfortably again. I haven't had a restful night's sleep in what feels like forever, though I know this has all only been going on for a few weeks since the symptoms started.

The one bright side- I peed out all that fluid (naturally- no diuretic). I lost 10.5 lbs since yesterday. I knew it was going to be something crazy. At one point I was getting up every 30 minutes for a full pee.

Thanks for all the support. I very much appreciate it. I'm trying to stay positive. I'm also very impatient and I want to fix things immediately when they break or solve a problem right away. So this is double hell for me.

No one else on here is going to care, I'm sure, but I just find it odd that in the middle of all this brain tumor stuff, you were able to absolutely flood the board with anti-trans posts where you called anyone who disagreed with you an "unhinged tranny" as you bragged about reporting a whole bunch of trans on Twitter, trying to get their accounts suspended.

If you're for real, may I suggest you not spend your final days online, screaming about the evil tranny menace?

[Quote]They put a mesh patch in instead of the small piece of skull they took out, apparently because the skull was too thin due to the invasion of the tumor. I know need to know what that means for long term. Do those things last forever?

OP, I had the very same mesh patch attached to my skull after a head injury when I was just a boy. That was decades ago and no problems. The mesh as opposed to a solid piece is meant to allow the skull to grow through it over time. It becomes integrated into the skull.

No, there will be no issues with metal detectors, etc. This is your new hardware, broh.

Thanks, R101.

[quote] No one else on here is going to care, I'm sure, but I just find it odd that in the middle of all this brain tumor stuff, you were able to absolutely flood the board with anti-trans posts where you called anyone who disagreed with you an "unhinged tranny" as you bragged about reporting a whole bunch of trans on Twitter, trying to get their accounts suspended.

I think you're looking to twist things, because you've exaggerated (and in some places flat out lied) about everything you just said. And since this doesn't belong here in the thread, whatever your motivation (and I can't even imagine), now you're also blocked. I may not be able to control what's posted, but I sure don't need to see this.

So good news, you don't have to waste your time ruining the thread because I can't see your posts anymore. (And since I know how to block and ID like everyone else on here, I can tell you have a few sock accounts.) Please go spend that time more productively.

[quote]I think you're looking to twist things, because you've exaggerated (and in some places flat out lied) about everything you just said.

The posts I was referring to were on the "Gay rights activist Fred Sargeant assaulted" thread.

[quote]since I know how to block and ID like everyone else on here, I can tell you have a few sock accounts

There's no way to "block and ID and tell you have sockpuppet accounts."

I won't be posting again on this thread, and I really hope for the sake of the real people on here who have shared their stories that you're not trolling.

Wow, R100/R104. Just stop. You're being inappropriate and you seem very cold-hearted.

Sorry you've been up all night. I don't know whether the mesh metal screen will set off alarms, but that's a good question to ask the doctor or the manufacturer. First get your health in order and then worry about traveling. :) If the metal does interfere with security scans, that's not a problem. You'll just declare that and they will pat you down instead, no problemo.

I'm the one who told the long health stories about my mom and dad. I didn't mean to distract from your life's story; I just wanted to offer some examples of how unpreditable medical diagnosis and care can be for the sake of saying don't go by standards you are reading about. There are common ways of things happening and there are exceptions and in my experience, exceptions have been closer to the rule than not.

Speaking of examples, one more from my family—this one SHORT. My uncle had a brain aneurysm 15ish years ago. He "should have" died. Very low survival rate. He survived and he is fine, except that he is getting old and old age takes a toll. His brain is fine, anyway. I believe there may be some device implanted in his brain. If there is, it doesn't affect travel at all. He and my aunt are always on the go, driving around the US in a camper and traveling to Europe, Mexico, Hawaii, Alaska.

[Quote]I don't know whether the mesh metal screen will set off alarms

How would you? You don't have one. Maybe read r101.

First time I've seen this thread. Sending you (OP) positive thoughts and wishes. You are being very strong and brave. I'm watching the thread to see your updates. God bless.

[quote] I'm the one who told the long health stories about my mom and dad. I didn't mean to distract from your life's story; I just wanted to offer some examples of how unpreditable medical diagnosis and care can be for the sake of saying don't go by standards you are reading about. There are common ways of things happening and there are exceptions and in my experience, exceptions have been closer to the rule than not.

You did not distract at all and I appreciated your time and effort. If I gave you the impression I was upset with you, it was not intended and I apologize.

OP , I'm not sure if this was said before , but since this is DL after all... can I have your stuff?

OP? I don't know if you mentioned your age, but I just turned 64, and if there's one thing I know for sure, you have to do the things you want to do while you're still healthy enough to do them. So here's hoping you have the healthy time and the financial means to do all the things you've always dreamed of doing.

Good luck, and know I'm thinking of you and hoping for the best.

I am 54, R111, (but I do actually look 42, however, I'm not sure how much longer that's gonna last). I don't have any superficial kinds of things I'd like to get done before whatever happens happens, but I do have other goals, some of which I am in the middle of and close to finishing. And I am terrified that I won't get there.

Today is not a good mental health day for me. I am trying to find a therapist who has experience in dealing with cancer patients, because I cannot continue to burden the friends I have with anxiety calls. I won't do it. I won't even do it to strangers on here. But I will happily pay someone to listen to me, so the hunt is on.

[quote] OP , I'm not sure if this was said before , but since this is DL after all... can I have your stuff?

Honey, I got a lot of shit. And there may come a time where I throw out an offer- if you come and box it up, you can take it home.

(((((OP))))) Love you, OP! You are not a burden.

Yes, OP, as another poster stated, the mesh acts as a foundation for new bone growth: a bit like laying down a grid. It is strong, but will incorporate into new skull. Titanium is usually used, and there are literally millions walking around with titanium plates, screws, meshes, etc. in their bodies as a result of broken bones, surgery, etc. (should be no problem traveling or getting scans. And the mesh will be part of your medical history, so scanners/medtechs should be aware.)

The PET scan is a good idea and your surgeon will likely bypass any insurance issues.

You likely received standard corticosteroids prior to cranial surgery to prevent brain swelling from any surgical trauma. Hence the fluid retention that you are now releasing via urine.

Your brief hospital stay following your craniotomy is encouraging: sounds as if there were no complications and pain that was not too severe.

Regarding the pathology, if you are confident that it is metastatic disease, your surgeon may liaise with your prior physicians to determine the next steps. If there remain residual aspects, again options are on the table: radiotherapy/targeted immunotherapy/gamma knife/etc.

This will depend on the pathology (type of cells) and degree of differentiation of the cells found on the path report.

Again, usually, met disease is a bit easier to treat than primary brain cancers such as GBMs. Although this is not a hard and fast rule. New drugs are developing and as another poster noted, folks can do very well with newer treatments. (Appreciate that the poster reported that their friend, the patient, noted that her medicine was her “FRIEND”. Very wise.)

During this critical time, attitude and overall body wellness will enhance outcomes. Don’t know if you are open to things like visualization or meditation, but we are seeing more and more the impact of non-physical aspects on the corporeal system (e.g. recent study showing how this can be as effective as BP meds for the treatment of hypertension.)

Having someone to talk to is helpful: whether a therapist, friend(s) or here on the board. This is a heady (no pun intended) time for you and most people would be open, understanding and compassionate to all you are experiencing.

Well wishes your way....

Thank you, R115. I am trying very hard to not fall apart today, and your message was very encouraging. I wish that I could pull it together better right now, because I've been sitting in this chair since about 3:30am and I can't seem to focus on anything else. This kind of news is a paralyzer and I might be paralyzed for a few days until I figure out how to move past. I might need to just hunker down with every old television show I've ever wanted to watch or re-watch and just zone out until I can get some more answers.

I have reached out to wellness center attached to the hospital where I had my surgery and I am hoping they will be able to refer me to a therapist

OP I don't even know if it is appropriate under the circumstances, but I do think anxiety is exacerbated by a lack of sleep. You mentioned earlier that you haven't slept. Is there something they can give you to deal with it. Shit. You have been through a lot. Of course you're feeling paralyzed. I can't even imagine dealing with all you have been through. You have a long harrowing road , and as cliche'd as this is, the only way out, is through, After spending time with you on this board, I'm convinced you will get through this. it's overwhelming and you are right to just take some time and let it all wash over you. A therapist is a good idea.

I have xanax to relax me, R117. The big issue is that my head hurts most when I'm horizontal. I did nap a couple of hours in the recliner and may do so later this afternoon.

Thinking of you, OP!

OP people survive for years with brain mets, they’re not like primary brain cancer (glioblastomas.) Sometimes they stay stable and don’t grow, or don’t recur after being removed. There’s always gamma knife for whatever part they couldn’t surgically resect.

I have a feeling you’ll be fine and around for years to come.

[quote] Thank you, [R115]. I am trying very hard to not fall apart today, and your message was very encouraging. I wish that I could pull it together better right now, because I've been sitting in this chair since about 3:30am and I can't seem to focus on anything else. This kind of news is a paralyzer and I might be paralyzed for a few days until I figure out how to move past. I might need to just hunker down with every old television show I've ever wanted to watch or re-watch and just zone out until I can get some more answers.

If in the middle of overwhelming thoughts about all that has transpired, distraction (via television) may be an effective antidote. It is recommended that you tell yourself you can think/worry about the circumstances another time. Meanwhile, try redirecting focus on things that pull away from anxiety-provoking mentations. If your thoughts turn again to worry, imagine the best possible outcome to your situation. Don’t worry about how or when this will occur....just trust the situation will resolve to your greatest satisfaction and then turn your attention away from the scary thoughts to distraction via tv, music, rest/sleep, etc.

This may provide some “breathing space” and allow for some bodily relaxation. The in between time (before surgery/before final pathology results/before obtaining therapy) can be notoriously stressful to navigate.

Anything you can do to ease your mind and relax your body can aid in the healing process and make this uncomfortable period less challenging. All things considered, you are doing well (otherwise you’d still be in the neurosurgical ICU), and an inordinate amount of patience is necessary to pass through this awkward period now.

Be patient with yourself, and even if you fear otherwise, TRUST that things will work toward your benefit.

Talk to us more here on the board if you find it helpful. Many of us here care and are supportive. We want you to have the best possible outcome.

OP, re a therapist - are you being treated in a big cancer center? They usually have social workers affiliated with the program who either provide counseling themselves or can refer you to a therapist experienced in working with people with cancer. As a mentally competent adult with (I assume) no major financial barriers to your treatment, you probably have to ask to see a SW, as a referral would not be automatic if there was no indication.

Also, as needed, keep reminding your docs that you're single and have no one to look after you at home (if that's true). Many docs assume that "everyone" has family around to take care of them unless told point-blank "I'm alone in the world". They really don't want to get involved in patients' home lives, but that's what the social workers in a big cancer program are for - to guide you to services you may be eligible for, including MH.

Head / neck things are v complex. I had sinus / throat issues for years that eventually turned out to be caused by a combo of quite benign things (reflux and an internal bacterial infection in my tonsils) that were referring the issue to other parts of my upper respiratory system. Not saying that’s what you have but seems to be quite often that you’ll get inflammation in areas where the issue is nearby but not quite in that location….if that makes sense.

Damn, R123 -- read the thread!

Thank you all. Regarding a therapist- yes, I most definitely want to start seeing one. I'd been seeing one recently before all of this began, but it had not been for that long, and I also know he's not equipped to "specialize" in this sort of thing. I started doing some research yesterday for therapists with experience treating cancer patients and found an outreach program tied to the hospital where I had my surgery and spoke to a very nice woman who is going to get me some referrals.

But a story- 6 years ago, when I got colon cancer, mid-way through chemo I was having a lot of issues with my oncologist (much too long of a story) and I decided to do this very same thing, find a therapist who had experience w/ cancer patients. I found someone online, sent a query email, explained the situation, and he said, "Not only do I have experience treating cancer patients, I am being treated for lung cancer myself." I went to a few sessions and realized they were five minutes about me and the other 45 minutes about him. But it was good to talk to someone. Then the cancellations started happening. And then I never heard from him again. I found out a couple months later just by doing an online search that he'd died. (I had a feeling it was something like that.)

So, of course, this time around, only healthy therapists.

Yesterday was a super down day, but I feel a little better today and I will take it. I also had a semi-decent night's sleep, which really helped. I am going to try to walk a bit today on the treadmill. Nothing hardcore, just as if I was going for a walk outside.

Chronic Fatigue Syndrome

0/10

R124 lol I did skip most of it.

Thinking of you, OP. Wondering how your week has been so far.

Have you had your eyes checked? You could have uveitis, which can cause pain above and below the eye. Feels like a migraine and sinus issues. Eye pressure could also cause radiating nerve pain.

R130....go back to sleep.

Hi R129. Week has been okay so far. Not much pain and I've tried to stay calm. The good news is that I was able to appeal my PET scan to my insurance company on my own and get the decision overturned. I cannot believe I made that happen without a doctor intervening. They initially rejected it because I had a CT scan in the hospital 2 weeks prior to my surgery and my oncologist's office did not tell them that things had changed radically since the initial request.

So I am booked for that first thing Fri morning. And I will be meeting with my surgeon tomorrow to go over the full pathology of what they removed. Though the initial test they did in the hospital during surgery revealed it was metastatic, so I'm prepared for bad already. I'm hoping it won't be worse.

I shall let you know what they tell me. Fingers crossed and all that. Thank you for asking.

Thanks for the update. Great getting that PET scan decision overturned!

Will be on full positive vibe beam for you tomorrow and Friday.

Big hug to you, and hopefully some good sleep.

Keep on posting, OP -- we're rooting for you!

After reading OP's post at R132, I got angry. I remembered when President Obama talked about his mother in her hospital bed, ill with Cancer, and arguing with her insurance company, and here is someone who is ill with cancer and he has to personally appeal to his insurance company to get what he needs. The healthcare system in this country has not changed very much in all the years since Obama had to watch his mother. I hate the way these fuckers will mess with us when we are at our most vulnerable. I pisses me off. Sorry OP. I am glad you were successful and I want to echo R133. Take care.

R135 Earlier this year, my immunologist told me a monthly monoclonal antibody treatment may be a 'magic bullet' treatment for me. Its retail price is crazy expensive—close to what chemotherapy costs—but with insurance, it isn't. The doctor said his office would get it approved, but it would be a fight and take a while. We made an appointment two months later for the first shots. It had to be delayed twice because the insurance company kept inventing new requirements, and ultimately it took a bit over three months for the approval to go through. But the doctor had been through it before. He told me that his staff would probably end up spending 40-60 hours in total fighting with my insurance. He didn't bill for any of that time.

Not to be flip, but have you been tested for an STD? This sounds like a syphillis infection

Wow, R136, that is definitely a keeper of a doctor. So glad they got it settled!

Yeah, R138, I am very grateful for this doctor.

The crazy thing with the medication and the insurance is that the drug, an injectable monoclonal antibody, is approved to treat three conditions: chronic idiopathic urticaria (recurring hives of unknown cause), asthma that doesn't respond to regular inhalers, and nasal polyps.

Two of these are among the many semi-disabling *symptoms* of my illness, mast cell activation syndrome. They're not the worst of my symptoms by far. The drug is not approved to treat my underlying illness that causes the symptoms, but it is approved to treat two of the symptoms. And yet it does work to treat the illness itself and the many other symptoms it causes. I find that to be crazy.

It's like if a cancer caused a rash and a cure for the cancer were available, but insurance only approved prescribing the drug for a rash and not for cancer.

[quote] The crazy thing with the medication and the insurance is that the drug, an injectable monoclonal antibody, is approved to treat three conditions: chronic idiopathic urticaria (recurring hives of unknown cause), asthma that doesn't respond to regular inhalers, and nasal polyps.

OMG- were you on Zolair? When I had my first tangle w/ cancer and chemo, about 2 months or so after I finished I woke up one morning and I noticed I had hives on my torso. They weren't terribly itchy, but they looked like bug bites and I thought- oh man, did I get bedbugs? Then a few days later I was getting ready for work and I noticed my upper lip was a little swollen on one side. As the morning progressed, it got worse and worse and started to spread. I wound up leaving to go to urgent care, where they gave me a shot of Benadryl, which took care of the lip, but not the hives.

Turned out that my immune system had gotten repressed during chemo (no surprise) but had suddenly come roaring back and was now in overdrive. I had to go on a year-long monthly injection therapy called Zolair. I would go to my allergist's office, get an injection in the back of each upper arm and wait there for 90 minutes to make sure I didn't have a reaction.

The meds were super expensive, but I don't know how or why (if the drug was new, etc.) I was given some coupon by the manufacturer that gave me a discount for 1-2 years use and it only cost me $5 per dose plus the office visit). And I have decent insurance.

R140 Yes, I take Xolair. It has helped a lot, particularly with heat and exercise allergies that cause anaphylaxis.

And yes, same setup. Insurance covers a portion of it, and the remaining portion is covered by the drug company's supplemental program.

My condition, MCAS, has really only been well described over the past decade or so. It's considered rare, but more and more people are being diagnosed with it. It can be disabling.

The symptoms are severe allergic symptoms, primarily anaphylaxis, which can be life threatening if the airway swells up or if blood vessels swell up, making blood pressure suddenly drop. That latter of these is what happens to me when I overheat from exercise or being outside too long on a very hot day, or when I take any NSAID, and sometimes when I drink alcohol (but weirdly not always). There have been cases of the sudden blood pressure drop causing cardiac arrest and killing people.

Despite all the symptoms being allergic, it's considered an immunological disease. Despite being due to an overactive immune system, it's not considered an autoimmune disease. It's sort of in a class of its own, and there are no specialists to treat it. Instead, random immunologists, hematologists, oncologists and some allergists have taken an interest and have become quasi-specialists. It's very weird.

I am certain I acquired it following a long-undiagnosed Lyme infection because I did not have any of the symptoms before I had Lyme. The Lyme was eventually diagnosed and treated and all my nerve and joint problems went away, but I am stuck with this fucked up immune system that makes me dangeroisly allergic to heat, exercise, aspirin and ibuprofen and other random things. It affects my life tremendously. My job had an outdoor all-day retreat in August in Virginia, and no one gave a shit at all that I am allergic to heat—because, I realize, it sounds insane. I begged for them to schedule it during a cooler month, any month but July or August, and they did the first week in August. I can't work out anymore without nearly losing consciousness. Blah. And this disease is being disgnosed more and more often as more doctors come to understand it. It probably will not be considered rare within the next decade, and it looks like COVID may trigger it in some people, as well. Fucked up, all of it. My doctor thinks Xolair will be approved to treat it, not just its symptoms, within the next few years.

Wow, thanks for sharing that, R141. (And of course I forgot it was an X and not a Z because it's been about 5 years since I've been off of it.)

I just looked up MCAS. I have heard of it, but was not familiar with the symptoms, issues, etc. surrounding it. I'm sure people think you're imagining things when you tell them you have "allergies" to certain materials. I actually went through something similar many years before my time with Xolair.

I moved from NYC to LA in the early aughts, and about 3 1/2 years after being here, I started having symptoms of what I thought was bronchitis. Itchy airways, coughing, blocked passageways, and they would be triggered by things I had never had an issue with, most specifically wood. I had to sleep on my couch for nearly a year because I became allergic to my sleigh bed frame. I was also badly triggered by any scents. I started to feel like Julianne Moore in Safe.

Went to a ton of doctors, got misdiagnosed, put on several different drugs, told I was making it all up... this went on for more than a year, and I nearly had a nervous breakdown because I knew something was wrong, but no one could figure it out.

One evening I was in class and I was talking with my teacher and I mentioned this and she said- I know exactly what's wrong with you because the same thing happened to me, and I'm going to tell you who to see. She sent me to her ENT who diagnosed me as having an allergy to the small particle pollution in the air out here, and put me on a series of allergy shots for a year (but not Xolair) and slowly but surely, my immune system calmed down. It took a while, and I still have to be careful of scents, but I can actually be around wood again.

How are you doing with the Xolair? Has it helped? Are you able to do more with it?

Well done winning your appeal! Good luck for Friday - let us know how it goes.

R142 Thanks. I don't want to hijack your thread. The Xolair seems to be helping. It's not an allergy shot...it works differently and my allergist-immunologist office makes me sign in on a different clipboard than the allergy shot people use. 🤷🏻‍♂️ My poor condition doesn't have a home. 😤

I take four antihistamines (Allegra, Xyzal, famotidine and hydrozyzine) and an antileukotriene medicine (Singulair) daily, and those do a good job of controlling my symptoms day to day. I have occasional flare-ups/attacks, and certain things, like aerobic exercise that heats me up and an iodine CT scan contrasting agents, continue to cause anaphylactic attacks.

Xolair has improved that. My doctor cut back two of my antihistamines about six months into the Xolair and I had exercise-induced anaphylaxis again multiple times so I am back on all the drugs now.

As I mentioned, Xolair is approved specifically to prevent hives and I haven't had hives since I began taking it.

Hives outbreaks just come and go and so they never really bothered me much, but it turns out they are a symptom of anaphylaxis, and when I'm breaking out in hives on the outside, something similar is happening inside on all the outer 'skin' of my sinuses, respiratory and digestive tracts and organs, and it can cause sudden cardiac arrest, diarrhea, throat constriction, etc.

I found out in 2020 that I have two small aneurysms in arteries stemming directly from my heart. Cause unknown but I suspect it's from the constant inflammatory cycles weakening the blood vessels' walls and making them dilate over time. It's a mess. I hope researchers are tracking development of these types of major coincidental issues, including issues potentially like yours, to determine over time if there may be any correlation.

You're not hijacking at all. I'm very interested. I appreciate you sharing.

The things I've learned here on DL! Thanks all for sharing. Seriously.

Between you OP and Joe, DL has its sharp bitter edges blunted.

Got back a short time ago from the PET scan. Won't have results til next week, but all my appts are set. I met with my surgeon yesterday for a post-op and was hoping to get some more information, but all he did was leave me with more questions he couldn't (or wouldn't) answer, so that was very frustrating, as I would really like to know what I'm facing.

He also seemed to be annoyed that I was not using their practice's oncology team, but I have my own. I have an oncologist who has been treating for for a few years as maintenance from the previous cancer and I've already met with their radiation oncologist pre-surgery who I liked. Plus, they are 10 min away from my house as opposed to 45 min each way for this place. I'll have to have 30 radiation treatments. I can't deal with traveling that far every day. I told them the first day I met with them that I had an oncological team in place, so it wasn't like I misled them.

So I need to meet with both oncologists next Friday to go over the best treatment options. I already know the radiation protocol, but we need to figure out any additional chemo or immunotherapy. Gonna try to put it out of my mind for a week, and as always, stay on top of things.

Sounds like you're in control. Good luck, OP.

Glad you are giving yourself a mental break from all of this. One question, would you like to be called by your name/nickname? If so, what would that be? Or are you happy with simply being OP?

Sending restful thoughts your way.

OP is just fine, thank you. : )

R33, Best of luck and health to you. 🤗

I agree wholeheartedly with your words about DL.

Still alive and kicking? Still breathing?

Sending you lots of love vibrations, OP!

OP, this is actually great to hear. The surgery went well, youre still here, and they got most of the tumor out. Now you can focus on the chemo+rads for the rest. Try to stay positive and look at how you caught this on time and youre dealing with it. Sending you positive vibes.

R152 Here. Not to hijack this thread, but after years of caution and masks, tonight I went to Urgent Care and tested positive for Covid-19. Wish me luck, boys!

Presenting hole in a drafty room can cause sinus issues.

I'm sorry to hear, R156. Get well soon!

Hi OP, I know you were taking a little break from all of this, just checking in and letting you know the good vibes are still being beamed your way.

Thank you, OP/r158! I eschewed taking Paxlovid, as it is only in capsule form (Oh, Mary, don't ask), but tonight, Day 14, I seem much better breathing-wise, no cough, and never a fever.

I do, however, have the fear of God put back in me again, though! No "Fall fests" for me, or concerts, stores, etc. I'll go leaf-peeping this weekend, but staying mostly in my car! Masking is back!

I wish masking was back for everyone! And I wish that, after three years, they finally learned that if you're not going to cover your nose, why bother? I am glad you're feeling better, R156!

Updates with me.... Let's see, I got the results of my PET back. There are about a half dozen small "hot spots" that they think may be cancer, some on my mid spine, pelvis, femur, shoulder, and some lymph nodes in my abdomen/pelvis area. When they told me that, I got very upset. I asked my oncologist how much time he thought I had- point blank I asked if I had months or a year, just tell me straight. He feels confident they can take care of it so that I should have years. For now, that's the best I can ask for, I suppose.

My radiation oncologist will be starting me on radiation in early November. This week I go for yet another MRI, plus a digital head cast to fit me for the radiation. They are starting with the head radiation, then will move to radiation on the bone spots, then at the beginning of the year, we will move into chemo/immunotherapy. For now, it's more tests and even more tests.

I was at the reg oncologist today and he kept me waiting for more than 90 min. Not only was I stressed out about the news I might receive, but I was also parked on the street and only had 2 hours in the meter. I got a little huffy, but was able to refill it, and I calmed down. I think it really was that I was waiting for potentially bad news, and to keep me waiting even longer was stressing me out to no end.

I'm still on the hunt for a one-on-one therapist who specializes in cancer patients, but in the meantime, I was told about this potentially wonderful organization here in LA that has group sessions, mindfulness classes, yoga, nutrition, etc. Even people to help you navigate insurance and financial issues. I signed up and I feel like this will help me quite a bit with things that I had no help with last time.

Thank you all for your continued good wishes and support. I really appreciate it, and it's nice to hear people care. Not that I don't have anyone, but I'm somewhat alone. I have no family (other than extended who are across the country) and most of my friends are in NYC. But I do have a handful of good friends here. I'd love to get a cat, but I worry about being able to take care of him.

OP/r161, You are a trouper for sure! I so admire your ability to navigate all your appointments, treatments, and news on your own with such fortitude!

Know you have me and many others here, this motley crew, hoping and rooting for you! 🙏

For fuck's sake OP, I dropped my phone when I read your diagnosis. You sound sharp though, good for you. The group you just mentioned sounds excellent and helpful. Rooting for you Mr. OP!

OP - Thank you so much for your update. Was thinking of you yesterday and wondering how you were getting on.

Bit of a sync with R163 as I, too, had to regrasp my phone whilst reading about the PET Scan results. Bit of a mind bender, and I believe you to be courageous by addressing your oncologist head on with the prognosis question.

What IS encouraging is that your oncologist feels confident that the PET results can be addressed. Been around the medical world enough to know that what you have must be eminently treatable, or your oncology physician would state otherwise.

In the meantime, you appear to be staying on top of things and while you continue to search for your cancer therapist, the group you describe sounds like a great option.

Know that you are supported here by invisibles in the ether sphere, and we are sending great vibes and very well wishes TO YOU.

OP metastatic isn’t what it used to be. With modern treatments, people can live for years, and live well. I’m glad you have access to lots of support too, things like yoga, acupuncture etc. can help a lot with symptom control and quality of life. Rooting for you!

Bone mets hurt like hell, but there's a daily tablet you can take which puts them to sleep. They reactivate when you stop taking the tablet, though. Read about this in the excellent autobiography When Breath Becomes Air, about a surgeon battling stage 4 cancer.

Op thank you for your update. Glad to hear that there is a support system for you.

Could you maybe foster a cat? Some companionship, giving a cat a loving home until they find a permanent one.

[quote] Bone mets hurt like hell, but there's a daily tablet you can take which puts them to sleep. They reactivate when you stop taking the tablet, though. Read about this in the excellent autobiography When Breath Becomes Air, about a surgeon battling stage 4 cancer.

No one told me this, and thus far, I'm not necessarily feeling pain from them. They want to give me injections to help strengthen the bones and they want me to start on calcium supplements. I like to know everything, so I might pick up that book. Thank you.

[quote] Could you maybe foster a cat? Some companionship, giving a cat a loving home until they find a permanent one.

I've thought about that. Once I settle into whatever routine I do, I may look into it.

Fostering a cat is a great idea because you can request one that's very affectionate and loves a cuddle. Nothing like a lap full of warm, soft, purring cat to calm you down. If you buy a kitten you can't guarantee what kind of personality it'll grow up to have, and cats can be aloof.

OP, that Breath Becomes Air book is excellent but caveat that the surgeon dies in the end (after many years still working) and the last chapter is written by his wife. His bone mets had grown beyond the black spot stage but hopefully yours won't.

Another grim but compelling cancer bio is Spoiler Alert: The Hero Dies by the gay TV critic Michael Ausillem??? (a similar surname that I can't remember).

R171 Thanks for the spoiler!

[quote] Bone mets hurt like hell

This isn’t universal and varies from patient to patient.

We don’t even fully understand the pain process in general; let alone how it varies amongst individuals.

Get fixed before it starts eating into your brain.

OP, your health problems are being caused by your very large penis, your enormous tallywhacker is stealing all the blood to maintain your massive erections, & your prodigious amounts of thick, pearly jism from your humongous, throbbing member are causing dehydration.

What were we talking about?

I just had to come on and share what a lovely surprise I got from my laundry delivery service. I kept having to change my pick up days and then I had to switch cards because I put a large amount for medical bills on the one they used for auto pay. I apologized and let them know what was going on (not in super huge detail) and that to please bear with me because I may need to switch pickup days a few more times until my radiation schedule is set.

I just found a package at my door tonight and they sent me an Amazon gift card with get well wishes. I am so touched by that, and I really needed it today, which was not the best in terms of medical things. My MRI appointment was somewhat harrowing, and I had a phlebotomist and a tech who both just made me look like a Monty Python skit.

But this really made me smile. Thank you, laundry service!

I am a hard case, and I am crying. That is fucking beautiful, OP. You are too. My husband and I think about you often. We may never meet (though who knows), but we feel close to you.

OK I've sapped out enough. *sniff* OK, maybe not fully. Anyway, sending love from me (Victor) and my husband Marlowe.

R176 Little gestures and a little humanity can make all the difference in the world. Sorry about the medical misadventures.

When I was very sick and bouncing from specialist to specialist and lab to lab, and enduring agonizing pain for years, I tried doing what I had always seen my grandmother do when he crumbling spine caused her pain: I told myself, 'This, too, shall pass.' It seems like a trite cliché, but after a short while, it made a difference.

Along with that, thanks to a few adventures with ayahuasca, I learned to meditate. It became easy for me to close my eyes and conjure a little point of light that would bounce around and then with controlled breathing would grow and morph to take up the whole field of closed-eyed vision and wash an electric green light over and through me. Just from breathing into relaxation.

My first MRI felt sooo long with all the banging and clanging inside the narrow tube. The last one I had honestly felt like it was only a few minutes long because I went into that meditative zone with the comforting color washes.

Everything that comes goes. An annoying MRI is only 30-40 minutes of your life. Just a fleeting moment. Same with the prick of a needle. It's nothing. A papercut will keep causing you pain for days on end. Even an incompetent phlebotomist's needle doesn't compare to that; it comes and goes.

It may be easier said than done depending on how anxious you feel, but given all the medical stuff in store for you, including your radiation treatments, just digest that those are just isolated slices of time you'll carve out of your days and endure, and they will pass.

Any pain you may get from the treatments or the illness—it'll pass, too. Don't let it trick you into thinking your whole life is discomfort and pain. It will pass. Once you disempower pain by acknowledging out loud that it's got a shelf life, it will lose some of its power.

Love you.

Thank you both, R177 and R178. Lovely messages to wake up to!

R177, I don't know where you're based, but I highly recommend a laundry service. When I moved into the building in which I now live five years ago, I went from having a washer/dryer right out my back door to a dingy, filthy laundry room with three w/d for the entire building. Lugging the bags down there only to find that my lazy neighbors would just leave their clothes in the machines for hours on end drove me nuts. I started taking to doing my laundry at 2am so I would have a better chance of getting it done. Then a couple years ago, they replaced the top loader washers with front loader washers that were too big for the space. There's no room down there to move, and the washers reek of mold. So I said fuck it- and started using a laundry service. Yes, it's an extravagance of sorts, but the older I get, the less inclined I am to do stuff that truly annoys me if I can help it. And I'm happy to skip a few outings a month in order to have this.

I think back to my NYC days when I lived in a five floor walk up with no laundry in the building and I'd have to carry my bags over to the laundromat down the block at 7am so I could get in and washing before it got too crowded. For years I wouldn't even leave the clothes to be done by someone else.

See, you can tell I still have a remnant of a brain tumor. I just went off on a story that had nothing to do with anything. : )

I'm getting a little concerned in that the pain and numbness I was having pre-surgery seems to be coming back and I'm not sure why. I can't imagine that the remnant of the tumor that's still in there is starting to grow already, and enough to make a difference after only four weeks, but I cannot wait for radiation to start.

Speaking of- a couple days ago they did a cast of my head for the mask I have to wear during the sessions. For some reason, I thought it was just going to be digital, but nope, they laid me down on the table in front of the scanning tube, packed the back of my head with towels and then stretched this substance that felt like hot pizza dough over my face and around the top and sides of my head, down to my throat. It sat for a few minutes, and then they pushed me in and out of the tube to scan me a few times. I could breathe through my nose, as the material was porous enough, but as it dried, it tightened around my throat and I felt like I was being choked. If you want to get a good idea of how I felt, think of the scene in Alien when they bring John Hurt back to the ship with the facehugger attached to his head and its tail wrapped around his throat.

I told the technician after it was done that the mask was too tight on my throat and she said- well, it's going to be even tighter when it comes back. I'm going to need to be drugged to the teeth to get through this every day for six weeks.

You've got Industrial Disease!

It won't be fun Mr. OP, but think all those positive thoughts. Or at least tune completely out. Thinking of you.

OP

Astonished by what's happened to you and astonished at your great ability to handle it all. You're a bit of an inspiration to me.

Thank you. Be well.

Jesus OP, I'm sorry that the treatment is so harsh. I'm glad to "see" you when you post. Come here to vent, I don't know if you're religious but I'm praying for you.

OP, thinking of you and hope you're doing relatively okay.

I had the numb teeth and tendernesss around the eye. It was a cyst that had to be surgically removed and then grew back and had to be removed again ten years later.

It also came with morning vomiting and subnormal temperatures. Had to give up swimming too.

R188, he has already had a brain tumor removed recently - keep up.

I haven’t shit in 8 days. Please help.

Use your index finger and dig it out

Sounds like full blown AIDS.

More cunts coming in. FF and block of course. Sorry you have to see that shit, OP. Sending you cozy vibes.

Oh honey, I wish you had friends...

This asshole deserves no sympathy

He’s busy posting crap like:

[quote] If Alan was there, I'm sure everyone left with Monkeypox.

How ya doing on Halloween, Opie? Well, I hope. Keep us posted. We're going to support you through this to see brighter days. 😘

I'm doing okay. I resisted ordering ice cream from Salt & Straw today because cancer loves sugar. I don't want to make the same mistakes I made in the past.

Going to another radiation oncologist for a 2nd opinion tomorrow. Not that I feel like the person I'm with now is wrong, but my surgeon's office discussed my case with their oncologist and he says I should only need 3-5 doses of radiation instead of 30. I'm not quite buying it, because of the proximity of the tumor remainder to the optic nerve (1.5 mm) but it costs nothing to go hear his pitch, and if it sounds plausible, I can always bring it up with my oncologist.

I feel like the train has already left the station on my radiation- I've had the mapping MRI, the mold made for my head and the bone scan, and I really don't want to have to wait much longer to get started, but I'm always happy to gather more information.

Also, saw my GP today and he said to go ahead and enjoy my xanax during the radiation treatments, that I won't get addicted because the dosage is low and I'll have a couple days off in between each week, and radiation is hard enough that I shouldn't worry about undergoing it with claustrophobia. He's a kind man, but I get vibes from him that he feels I'm not going to make it through this (and I very well may not). However, I am choosing to give it everything I have and stay in the fight as long as possible because I have things I need to accomplish before I go, and I am not ready to go. I don't see him very often, but if I get that vibe from him again, I will politely but firmly let him know I don't need that energy.

Thanks for asking, R195. Hope everyone had a fun Halloween. I got a rock!

Checking in on you OP. How did the second opinion go?

I got a rock too.

Sounds like covid to me.

Things are not great. I spoke to my radiation oncologist on Tuesday because of the headaches and the bruising that came back under my eye for a few days (but are better now). He looked at the MRI they did on the 21st and said it looked like the tumor had started growing back. I asked if that was possible, as at that point it had been about 3 1/2 weeks since I had surgery and I never heard of a tumor growing that fast. He said it was rare. He also told me that the bone scan showed several more "spots" and that he wanted to re-think the radiation to 5 doses instead of 30 so that we could get to the systemic treatment sooner. Of course that set me into a tailspin. He said he was going to talk to my surgeon about the MRI to get his opinion and also talk to my regular oncologist and call me back the next day. I have to say that my hope went from about 90% to 0 after that call.

The next day I get a call from my regular oncologist asking if I'd started radiation yet. This totally boggled me because A- radiation was supposed to have called him the day before and B- they are brothers in the same practice and have access to the same records. How do you not know this? He said he wanted to start chemo ASAP and I said- Aren't we waiting for the genetic testing you ordered? Complete blank. I then reminded him that we spoke three weeks ago about him ordering further genetic testing on the tissue that they took out of my head, and that he was going to base my entire post-radiation treatment on it. He then hemmed and hawed and said that he would call the lab because he didn't have it. Which I took to mean he forgot to ever order it. He also says he wants to have a port put in (which I have had before when I had colon cancer the first time). Oh, and I asked him about the possibility of the tumor growing back in my head that quickly and another hem and haw and "it's rare."

I got home from my PT appointment and I get a call from his office saying that my first infusion appt is scheduled for Nov 14. I said- How can I be having infusion when I haven't even started radiation? So I completely flipped out. I had a follow up scheduled with the oncologist for this coming Monday the 7th (where I assumed I would hear the results of the genetic test). So I called both offices and I said that I needed both doctors present at that appointment and they were going to talk to each other with me in the room, we were going to go over every single question I had and every piece of data they had and explain why they didn't have certain things.

I feel so not taken care of, but I don't know what to do. I feel like I can't start over from scratch. I can't spare the time. I feel relatively secure in beginning radiation because of the two, I trust that guy more, and my 2nd opinion radiation guy felt he could also do it in 5 sessions. I just need MAJOR assurance that the optic nerve won't be damaged. And while I'm doing that, I can meet with another regular oncologist for a 2nd opinion, as long as I can get all my scans from the office to bring to the new doctor.

P.S. I emailed my surgeon about the whole tumor growing back thing. He told me he talked to my radiation oncologist yesterday and told him that whatever was on the MRI was likely collagen or inflammation. Now, is he certain about that- no. But he does NOT think the tumor could have possibly grown back that fast and he offered up two plausible alternatives, which neither of my oncology team did.

NOW ask me if I think I'm not getting out of this. (Actually, don't.)

R199 sorry that’s really shitty. Doctors can really make you feel helpless sometimes. Hope you have something nice planned for the weekend to distract you. Hopefully it’s just inflammation as suggested. Seems unlikely that it could have grown back that quickly.

[quote] NOW ask me if I think I'm not getting out of this. (Actually, don't.)

But I’m sure you still find your monkeypox jokes to be funny, asshole

R201, you can stop wasting your time. You're now on ignore. Whatever your issue is, I have no room for it. Thanks.

Good, you little bitch. Then I can continue to treat your disease with the same flippancy you treat others

To expect sympathy after making monkeypox jokes on a gay website is just bizarre

Your disease is mental

OP, Good for you for making your demands clear, and wanting to get everyone in the same room. That is especially impressive when your head is spinning from all of the mangled information/misinformation being tossed at you. Keep rolling with these twits until you can get that second opinion. I have to say that In my experience when things start out this tangled, they rarely get untangled. You don't have the time or patience for any fuckery to be sure.

We are here if you need to do any ranting or throwing of things. Or just a kind word. Big hug.

You know OP is just trolling you. She’s not sick, she’s just going for sympathy attention.

Why can’t you diagnose me? I’ve got more problems than a math book.

'He says I should only need 3-5 doses of radiation instead of 30. I'm not quite buying it, because of the proximity of the tumor remainder to the optic nerve (1.5 mm) .'

This will be why they don't want to give you too much radiation. Risk of blinding you if they irradiate the optic nerve.

'To expect sympathy after making monkeypox jokes on a gay website is just bizarre'

Fuck off back to the bathhouse, you chemsex slut. Not everyone who is gay fears monkeypox. You're the MonkeyPox Doonsday Troll.

* Doomsday

Yes, they explained that to me, R208, which is why I'm suddenly nervous that radiation guy #1 wants to now do it in five. I asked him if that would damage the nerve and he said no, but when I see him on Monday, I'm going to ask him to elaborate. However, if two radiation oncologists are saying 5 doses, then I feel a little better about it, but I still want an explanation.

I appreciate your explanation, though, thank you.

Although unfamiliar with the specifics of your case, think it very, very unlikely that a “tumor” regrowth is the source of your head symptoms.

Regrowth like that in a matter of days/weeks is virtually unheard of. Never have seen it in my experience. Have seen, though, “post-surgical” changes cause recurrent symptoms: swelling, fibrosis or just settling in of tissue to the deficit left from surgery.

May this ease some anxiety. Your plan to coordinate the physicians in an effort to integrate your care is a good one. Certainly not to justify their dropping of the ball, but physicians are human too....and sometimes (especially post-pandemic surge), everything becomes a bit too much for them. I apologize for colleagues and their issues and/or mistakes. It happens to the best of us; despite our sincerest intentions to assist in the healing process.

Trusting that a reset when you all meet will put things back on track and provide for a smoother course.

Hang in there. We (with exception of malicious trolls which you have wisely blocked) are sending you well wishes and our best energies.

Thank you, R212. That was a really sweet message and I appreciate it and it made me feel better.

One thing I didn't mention in my last update that I should have was that I attended my first Cancer Support Group meeting last night. They do them via Zoom and I want to say there are about 12-14 people in the group, but not everyone was there last night. They were lovely, supportive, warm people and immediately made me feel welcome and I hope that I can return that kindness to them and to anyone who joins the group in the future.

What I also realized, listening to their stories (which I will not elaborate on for privacy's sake except to say that so many of them are really struggling and have been doing so for years), was just how incredibly lucky I was the first time out with cancer six years ago. I had my surgery, which went well and left me without needing a colostomy, and though my chemo was fraught with a lot of side effects, they were nothing compared to some of the stories I've heard. I also realize I am not going to be as lucky this time around. But if these people can keep making it through and who are older and in less good shape than me, then I can get through it. I just have to remember that when I'm going through the side effects.

[quote] But if these people can keep making it through and who are older and in less good shape than me, then I can get through it. I just have to remember that when I'm going through the side effects.

This. Is. Key.

Great support community you’ve tapped into there. And have here also.

Keep the momentum going; despite setbacks. There will be progress forward and then some steps backwards. Do not allow the steps backwards to impede your progress. This is akin to running a marathon. You’ve done it before. Although it may have been a different marathon, you know how they go.

Most importantly, have faith within yourself and your body. Trust that with the adjunct assistance of your physicians you can return to your natural whole self: free of cancer.

The power lies within you.

[quote] Fuck off back to the bathhouse, you chemsex slut. Not everyone who is gay fears monkeypox. You're the MonkeyPox Doonsday Troll.

What a charming frau cunt you are

You’re the one who keeps making AIDS jokes, aren’t you?

How long before we see OP’s GoFundMe?

[quote] Not everyone who is gay fears monkeypox. You're the MonkeyPox Doonsday Troll.

Nobody who’s really a gay man thinks it’s a joking matter

Funny how you do

I'm sorry for what you are going through, OP. It sounds to me like they think they found some other spots from the bone scan, and that now they don't have confidence in the radiation alone getting rid of it. So they want you to do chemo ASAP. This happened with my mom's lung cancer, it was very diffuse so chemo was her only option for success. They pushed her to have it immediately as it was stage 4. She tolerated her first treatment very poorly, only a few days later did they get the mutation results back to find she would best benefit from a targeted chemo pill. That was much easier on her and she lived another 5 years.

You should push to find out what kind of testing they have done as you should have some results by now or very soon. Knowing what you are dealing with will give you your best chance at success.

Thank you, R218. That's good advice. Those are definitely questions on my list!

Oh, also, R218, did they have your mom get a port? I've had one before, when I did chemo in 2016, but of course had it removed. They want me to get another one, but I would rather wait to see if I am a candidate for a pill form instead.

r220 No, she was stable for 5 years on a targeted chemo pill daily. When that stopped working, the cancer mutated from non-small cell to small cell (very rare, but happens in 5% with that mutation). She went pretty quickly after that as it spread to her liver and spine. But the 5 years that she had, she did very well.

I forgot to mention, the first doctor my mom saw really dropped the ball. It was only when she went to Mayo's in Rochester that they did all the appropriate testing and found the mutation. I believe if she had not gone, she would not have had the time that she had.

Thank you for sharing that. I'm glad she was persistent and got the information she needed.

R152/r156 here. Thank you, OP and others, for your well-wishes. I'm apparently over Covid, my symptoms' being only coughing and fatigue (but I'm a lazy beeyotch anyway). I did need an inhaler (Albuterol) several times.

OP, here's what you do this weekend: Root for the Phillies! Haha! I keed, I keed. Not really! But you are going through so much physically and mentally, waiting until Monday for any clarification, that I wanted you to smile!

Remember: Vairst Letty is on your side. Mrs. Patsy Ramsey, formerly of Boulder, CO, has some pineapple for you. And Larry King wants to interview you (you'll meet Pia Zadora, too!)!

Today, 11/05, is my birthday. I promise to blow out the candle in my Tastykake Eclair while wishing you and all of us the best!

Happy Birthday, R224! I hope you enjoy your day very much!

And as a Mets fan (and also as a huge baseball fan in general) I am torn about who to root for tonight. Of course I hate Philly, as they are one of our biggest rivals. And the idea of Syndergaard getting a WS ring when he's barely pitched in three years and the way he treated the Mets when he left last season makes me nauseous. HOWEVER....

The Astros are cheaters, plain and simple. And they deserve nothing. So seeing them lose to anyone makes me happy. My only saving grace with having them win is that Trey Mancini, who I am a HUGE fan of (and who just got to the team from the Orioles this season and was not part of the cheating) will get a WS ring.

Honestly, I can't wait for the series to end so we can get to the fun part- the trades! the deals!

xoxo

Thank you, OP! But as for the Astros, one word: Texas!

👎😁

Hey OP. Thinking of you. How has your week been so far?

Yes, LA has been cold and stormy - I hope that you have been able to rest!

Oh dear, the first reaction I had to your symptoms was a brain tumor. A dear friend was diagnosed with one 2 years ago. Please keep us informed. You should take an advocate with you to doctor appointments. This can be a friend or relative. Have them take good notes on everything said and done. This could be very helpful down the line. It's good to have someone with you that can ask questions and be someone strong to lean on and go over things with. A sounding board is a great thing OP. Best of luck to you. I care very much that you are going through this.

Hey all-

It's been a whirlwind of a week, so I'll try to bullet point it for you.

- Had a powwow with both oncologists who seemed to be able to answer all my questions and left me feeling better about things than I had a week ago. They asked me to participate in a study for a non-chemo drug which I said I would consider.

- Got my port put in on Wednesday. All was fine, though I'm still a bit sore, and my chest hair is already growing back in so I'm itchy. I decided to get my port put in on the left side this time because I seem to have trouble sleeping on my left ever since the craniotomy and I didn't want to fuck up my only good sleeping side. So I'll have matching scars.

- Radiation kept being delayed until I threw a minor tantrum about it, and we began yesterday. I've had two doses so far and I have been surprised at how tolerable the procedure itself is. I am very grateful for that. I think I might actually be able to do without the xanax for my next dose. I've had slight headaches so far, but nothing awful.

- Radiation goes through next Wednesday and then I begin chemo on Nov 30. That I am wholeheartedly dreading. I've tangled with it before and it's awful. But I'll make it through.

Thanks for all your continued good wishes. They really do mean a lot and I appreciate you all.

Thanks for the update OP. I am so glad to hear that you are feeling more positive. Keep throwing tantrums where needed. Greasy wheel and all that. Treat yourself to whatever your heart and tastebuds desire. Hopefully, you can take a mental break from dreading the upcoming chemo. Keep cozy in the moment. *smooches*

I hope you don't suffer, OP. Best of luck.

OP, I work in clinical trials so im curious to hear why theyre asking you to join one in the middle of chemo + rads. Is it to replace chemo? Or afterwards for maintenance? Targeted immunotherapy?

Glad to hear youre tolerating the radiation. In my experience with Head & Neck most people have the toughest time due to that (swallowing issues etc).

Shellfish allergy and Epstein Barr

^Dropped on head at birth and dad abandoned him while going out for cigarettes

OP, I'm so happy to hear that you are able to tolerate radiation without xanax. I know that was a great worry, and I'm so thankful that has been lifted away from you. I'm pulling for you 100% and look forward to your updates. Sounds like you have good doctors, which is key.

R233, I'm not sure how much I can say about it without breaking some sort of rule (or if I'm completely off the mark with that) but it's not a chemo drug itself, it's a drug that's supposed to help mitigate the severity of a couple of particularly bad side effects caused by this particular combo of chemo drugs.

Ah ok makes sense! You can always get a copy of the consent to review fully, to see what extra work is involved for you, before making a decision.

I love OP! Such a stoical, articulate guy.

Well, thank you, R239 (and everyone else).

I'm not sure how stoical I am this morning. My left eye is very blurry and I'm having a had time tolerating light with it. Weird thing is when I close my right eye, my left is less blurry. It's like both of them together are blurry, but sharp on their own.

The left side is where I have been getting the radiation. Thanksfully I have two days off before I got back for the rest of the doses. I'll see if things improve. I wish I had a pair of big Barbara Barrie-Private Benjamin's mother sunglasses.

OP

What's happening?

Hey All-

Sorry for being out of contact. It was something of a hard week with radiation. The sight in my left eye was double for about 8 days and finally seems to be back on the mend. I finished radiation today after some breaks in between, and we will see what happens with that spot. They put me on steroids to try and lower the inflammation they think was affecting the the muscle of the eye and today is my final day on it.

My back has been absolutely awful. It's unclear if the pain is from bone mets or from a worn away disc, both of which were discovered around the same time, but I got an epidural in my lower back last Tuesday and it doesn't seem to have done anything. They warned me it might not, especially if it was due to the bone mets and not the disc, so I knew going in that it was a crapshoot. However, the pain is constant and nothing really takes it away.

What we are going to be doing next is more MRIs and a fitting for a back "mask" (similar to what they did for my head) and they are going to try and zap some of the spots on my lower back/spine in hopes that will lessen the pain. But that's going to take a few weeks because of the holiday and how long it takes to make these molds, etc. What I'm trying not to do is rely on pain meds. Even Tylenol (which is hit and miss) I don't want to go overboard on and kill my liver. I'm still doing PT twice a week, but once chemo starts on Nov 30, I'll have to stop it.

Couple good things- I was very relieved with how not terrible radiation was for the most part. Yes, the eye thing sucked, but I thought I was going to have to be drugged to the teeth to get through each treatment and I really didn't. That made me happy, and I have to take small victories.

Also some good news on the career front, which I'm not going to go into, but am feeling really grateful for because I need a reason to fight. It's not the mental thing this time around, it's really the physical thing- I'm worried I'm just not up to the challenge physically. Everything has changed so much since Covid. For most of the time, I have exercised a lot in my apartment (really only stopping over the past 2-3 months because of all this that's happened), but I'm mostly sedentary and I feel like I have a week and a half to get back up to speed to have the energy to tackle this.

I also got to watch TV again last night for the first time in over a week and, of course, I chose "Smile," which made me yell in disgust halfway through- You don't deserve two eyes! But I watched a documentary about Rickie Lee Jones tonight and that partially made up for it.

I hope everyone has a great Thanksgiving. I am grateful for all the well wishes and they mean a lot. And they help.

Some of you guys are just making up diseases.

R243, I guarantee you will have a miserable holiday all by your lonesome. Doesn’t have to be that way, you know.

Oh, I'm also thinking about putting up a Christmas tree this weekend. I haven't done it for several years and I have so many decorations and stuff. Might be fun while I still have the energy. Put on some old Christmas albums and make some tea.

A bit OT, pain directly in an eye, or both, can sometimes mean some eye disease, such as glaucoma. I know people who never needed eyeglasses who have glaucoma.

Appreciate the update, OP. You’ve been on my mind and in my heart.

Encouraged the eye is “on the mend” following the treatment. Am putting forth similar thoughts and energies toward an outcome for the back…..once treatment begins for it.

Congratulations on the career front. Nicely done.

May your Thanksgiving be restful, yet energising for all that’s to come. [And pain free-or pain (at the very least) that’s tolerable.]

Best wishes for the week.

Thanks, R247. I actually broke down tonight and took a Tylenol w/ codeine, my first, because my back hurts so much. I cannot wait to get to PT tomorrow.

Hugs OP. Here’s trusting that the med takes the edge off the pain and the PT is as you wish.

Thoughts your way….

A Christmas tree and PT sound good, OP. Try to do daily gentle stretching on the floor every day. Be careful of Tylenol- after a back injury I took so many, at this point my stomach revolts on a single dose. Enjoy as much as you can.

Hi OP, I really do hope you can find the energy to put up a tree. We have skipped doing one the last few years for various reasons, all depressing, and it actually seems to have made it more depressing. Might try it this year in your honor! Do it in wee chunks so it doesn't feel overwhelming.

I understand about the hesitancy about taking anything with Tylenol, but sometimes the pain makes everything worse and you need to give yourself a break from it. Or at least get it down to a slow simmer. If you haven't already, you might want to ask for a script for Percocet. Less Tylenol, more pain relief oomph. I hope the PT session goes well, and you can get back to your nest and relax a little. Hugs.

Happy Thanksgiving OP! I hope you do whatever you want today and don't touch a thing you don't want to do. Sending you warm thoughts for a mellow day.

Having a particularly bad couple days with pain from my spine. I'm afraid I'm going to have to get a prescription for some heavy pain meds. It's getting to the point where I just can't function. Sitting hurts, lying down hurts... standing helps for a bit but I can't stand for hours and hours. I never thought I'd say this, but I absolutely cannot wait until I can get radiation again (if it means it will relieve the pain).

It has definitely been depressing realizing that the pain is coming from bone mets, and bone mets are never followed by a good prognosis, but if the pain was lessened, I think I could take this on a little better. I'm just so afraid of becoming dependent on painkillers (not that I've ever had an issue with addiction, but I suppose you have to start somewhere).

Ok, whine over.

That isn't whining, that is telling it like it is. I am so sorry about your pain levels. The sooner you can get that medication the better. Constant pain is going to put the brakes on any level of improvement both physical and psychological. Please check in when you find something that works for you. Hopefully tomorrow you will have some good stuff. Addiction is the last thing to be concerned about right now. It is all about finding any amount of comfort possible. Besos.

Thank you. My doctor called me this morning and he called in an Rx that I will pick up tomorrow morning. I was up last night pacing the apartment until 3am, trying to keep the pain at bay. I finally passed out for a few hours. For some reason, the pain is so much worse at night and I can't figure out why.

And then today I had to finally focus on something career-wise and then get on a call to discuss it with a colleague and it was the happiest and lightest I've felt in a while. I was focusing on something that means a lot to me and that I'm passionate about and for that hour, I forgot I was in pain and wasn't focused on all the bleakness. I cannot tell you how grateful I was for that hour and I am going to try and create as many of those opportunities as I can handle going forward.

I am very happy to hear about your uplifting experience regarding your passion project, OP. May you these good times come to you often and without too much effort.

I recently heard about this song from the duo Marconi Union. The song, "Weightless", was designed with the input of sound therapists. It's been proven to reduce anxiety and have a positive influence on heart rate and blood pressure. It's considered to be so relaxing, that one should not listen to it while driving. I listen to it on Spotify, but here's a You Tube link. It seems to have many parts and this link is for the full version.

You are in my thoughts...

I hope you get some powerful painkillers onboard soon, OP. Pain can negatively affect mindset so much. All my best wishes for you.

Hi OP how are the painkillers working for you? Have you finally got a bit of relief?

Not working, really at all. I went from Tramadol to Norco and they barely take the edge off. Worse, I think they are causing insomnia. I have barely slept more than 3-4 hours a night for the past week or more. I'm stopping them and I just called my oncologist's office to see if they have any recommendations for a palliative care physician. I need some relief, especially at night, when the pain gets worse. I also read that the opioids that are in these meds clash with SSRIs, which I have been on for several years. And I can't just stop the SSRI cold turkey to start taking opioids.

And the past few days I've been having pains in my groin. My oncologist says that nothing from the Oct PET scan is showing up in the colon, but I feel like these pains are similar to the first time around. I know I also have bone mets on my pelvis so maybe they are what's causing that pain. But now it's back AND front.

Yesterday was my first session of chemo. 10 hours in the chair and I brought it home with me for 2 days. I get it removed tomorrow around noon. I can already feel some of the side effects, but that's not surprising. I remember them from before. One is complete intolerance of the cold, touching anything cold, ingesting anything cold... I bought myself an electric tea kettle so I can keep water on at all times and stay hydrated. Also had a lot of foot and leg cramps last night.

A nice thing that happened- I can't shower for two days when I have the pump attached to me, so when I got home I did a Hibiclens wipe bath and then my friend came over to wash my hair. (I have pretty long hair in the wake of Covid, and because they made the radiation mask with it, they asked me to keep it as is for the time being.) It was a nice, small kindness after a pretty terrible day and I really appreciated it.

I hope you get sone relief at night, OP.

OP, I feel for you. Had my second chemo Wednesday, and my oncologist prescribed steroids (Decadron) for the pain. Also, I found the leg and foot cramps were caused by the nausea meds (Zyprexa). I am very fortunate that I have had no nausea as a side effect, so we stopped the nausea meds and the cramps went away. You might ask your oncologist about that. (I'm local to you, at Kaiser in the Valley). Good luck.

R261, do you mind if I ask where your pain is?

Also, please keep us posted on how you're doing. And if you need any kind of support, check out the CSCLA online. cancersupportla.org

Are you a candidate for a PCA pump? That device delivers a sustained dose of pain meds (along with an occasional "bonus" dose when you need it) so you don't experience "peaks and valleys" when your oral med begins to wear off. Just a suggestion -

I'm not sure, RN, but I just called Cedars Pain Management Center and they told me my dr. needs to call in a referral and then they can see me.

Good for you - (although I thought referrals had gone the way of the land line phone, but apparently not - money hungry vultures) You are really your own best advocate!! Keep on swinging, buddy!

OP sounds like a bad episode of St. Elsewhere (now on Hulu).

[quote]I recently heard about this song from the duo Marconi Union. The song, "Weightless", was designed with the input of sound therapists. It's been proven to reduce anxiety and have a positive influence on heart rate and blood pressure. It's considered to be so relaxing, that one should not listen to it while driving. I listen to it on Spotify, but here's a You Tube link. It seems to have many parts and this link is for the full version.

TEN hours of that?! The sound therapists should be fired. That Marconi Union 'song' with the repetitious constant thumping would give me anxiety AND a heart attack! Then, I'd jump out a window.

Repetitious thumping such as the sound of a relentless bass are actually known to cause people to get angry, agitated and anxiety ridden. Most unpleasant sounds can do that. Imagine a child screaming or a dog barking for hours on end? Same difference.

OP, my pain was primarily in my feet and hands. Felt like electrified hot pokers were being jabbed into me repeatedly. Myalgia and neuropathy, but I also had more generalized over all body pain. I am hopeful - at this point after my first chemo I was in agony. Today, with the steroids, I'm comfortable. For me, it's a magic pill.

Hi OP, just bumped into your thread today and read through it. I was caught by your initial mention of numbness on your face. And then the oh no cancer diagnosis. I also have numbness off and on around my upper lip and into the left nostril. And I just got a cancer diagnosis about 5 weeks ago. Was supposed to have surgery last week but a chest infection delayed it until next week. Meanwhile I am spinning out about what this delay might mean.

Well my mind has been in a dark place and I am trying to ignore the numbness because there is enough on my plate right now but at some point in the next couple of weeks I will speak to my doctor about it.

I think the worst outcome is the one I believe is going to happen.

People who go through cancer treatments are extremely brave. I am really sorry for the pain problems you are having OP.

This is my first experience with having cancer. I don’t feel sorry for myself but am scared as hell and sorry for my family. I share your sentiments about not wanting to burden people with my experience and I’ve only just started.

Hope you are going well OP with your pain management.

All my best to you as well, R269.

Hi OP. This is so fucking shitty and I have no words. Hopefully palliative care can come up with a good plan for you. That you were even given Tramadol which is NOT a great painkiller blows my mind. Norco isn't all that either for what you are dealing with. Please let us know when you do speak to a pain management specialist and what plan they outline for you. It is such a fucking touchy subject in this country. I hope you aren't given the run around. Squeak that wheel, baby!

Alexandrite, I want to say hello and that I'm happy you found this thread. I am terribly sorry to hear about your diagnosis but I hope you can meet it head on and do whatever you can to beat it.

You didn't mention what kind of cancer you have (and you don't have to, but I wondered if it was in an area that might be affecting the numb areas on your face. My numbness hung around for about a month or more after the surgery and I've really only started to notice a couple weeks ago that I don't have it anymore, so it's very likely whatever surgery you're having will alleviate it.

Don't freak out about delaying the surgery a week. It's super frustrating but you have to be in the best health possible.

As for being in a dark place right now, I can only speak for myself, but I can't imagine that I'm alone in this....

Cancer patients- Our lives are one big dark place right now and it is very easy to huddle in there. I cannot tell you how many times a day I tell myself negative things about what's going on with me because it's just a reflex action. But that's going to get tiresome soon and you'll look for ways to pull yourself out of it. Just be patient and good to yourself.

Thanks, R271. I am hoping to have an appointment with someone this coming week and I will be calling them first thing Mon morning now that I know they got the referral from my Dr.

Good luck..!

Sending nothing but the best wishes (and virtual hugs) to all the DLers -- in this thread and others -- dealing with health challenges. May your days be as pain-free as possible, your treatments successful, and your nights filled with deep, restful sleep.

OP, r269, r275, et al:

🙏

OP, fentanyl patches work for bone mets. There is also a chemo pill taken daily which puts them to sleep - the guy in When Breath Becomes Air was taking them.

Hi OP, have you found anything that works yet? I hate the thought of you suffering.

I finally had my pain management appt today. He has prescribed a couple of things for me that are non-narcotic, including a nasal spray that helps with bony pain and a cream to spread on my back. He also suggested acupuncture. But he does not want to do any needles like you would for pain blocks and does not think I'm at the point where narcotics are the last resort. (Though he seemed to think that was coming, which unnerved me.)

I will pick up the Rx tomorrow morning and call the acupuncturist. I've done acupuncture once before (when I had chemo the first time, it wore away the sheaths of the nerves/tendons in my wrists) and it didn't really do anything for me, but I am more than willing to try it again.

Good for you - I was going to suggest acupuncture before, as I have always been an advocate for its benefits. Glad you are willing to give it another go.

Thinking of you - stay strong!

OP, in your position I would be accepting all the narcotics, but you also need to obtain a stimulant to take at the same time or you'll be sleeping your days away. Adderal, phentermine, amphetamine. You can buy these online.

The chemo tablet that puts the bone mets into hibernation is called TARCEVA. One tablet a day.

Whilst taking this, the neurosurgeon in When Breath Becomes Air was able to return to work.

Hope you're okay, OP.

Thank you, R282. I have an appointment with my oncologist tomorrow and I will ask about it.

May I share that I have had 2-3 decent days, pain wise. Not completely pain-free, but manageable. And there have been other issues. It's super dry in LA right now, so I have been waking up at 3am with terrible sinus headaches which go away when I get up. I've had these on and off for years when then weather gets like this, so I know what it is. I've had to change my sleep schedule to during the day when it's not as dry out, and that helps. The mouth sores are also painful, but they are starting to recede and I will make sure I get something to take for them by the time the next dose of chemo comes around.

But the great news is that since Thursday I have not been in the agony that I have before. I can't tell you why. I'm not taking anything new and I stopped any opioids weeks ago. I'm only taking Advil. The past two days I've been able to get on the treadmill for short periods of time. Now, of course, it's only at 2.0-2.3 speed and level, and I've done between 15-25 minutes, but it's more than I've been able to walk in months and it has done wonders for my mental state. I feel like I could do more, but I'm taking it slow and cautiously because I don't want to wake up the next day in pain. My goal is to try for two 30 minute rounds per day, one in the morning and one in the evening. I used to do an hour on a circuit that went faster and slower and changed inclines, but I'm nowhere near ready to get back to that.

I had my pain management appt on Thursday and there wasn't a whole lot he felt he could do for me. He prescribed some nasal spray that women take for osteoporosis but apparently has a painkiller effect, and an over the counter cream that I've already tried and does nothing. I checked in on the Rx to see if it was ready and found that there was a 2nd prescription for a nasal spray of Naxolone. For those who don't know what that is, it's Narcan, which is only to be used in cases of opioid overdose. I called the pharmacy to make sure they got it right, and they were puzzled about it. I called the doctor's office the next day and his nurse said- Oh, hmmm... that must have been a mistake. Can you imagine if I had just taken it without question, like so many people would have? I won't be going back to that doctor.

I know I'm always gloomy, and I'm sure that will come back again before too long, especially since chemo is right around the corner, but I have just been relishing these past couple days where I feel human, and I am so grateful for them. I've been in constant debilitating pain in one form or another since early September and it's been exhausting. Even having it ease off as much as it has while still being present has been wonderful and has made me feel a little more hopeful. I know what's around the corner, but I want to do as much as I can to stave it off for as long as I can and not being in terrible pain goes a long way to accomplishing that.

Please get a humidifier OP, especially for sleeping.. It will improve your life

P.S. Glad to hear you're on the treadmill, and are having some good days. Thinking of you

Glad you’re having some good days. Hang in there! Thanks for the update.

[quote] Please get a humidifier OP, especially for sleeping.. It will improve your life

I got one! I've used it a few times and have not noticed any difference. At first, I had it on the floor because I had no place to put it where I wasn't worried about it leaking (I have concrete floors), but then I read that it really has to be head level to do anything, so I bought a TV tray table and I still didn't notice any benefit. The next time I sleep at night, I will try it again.

I'm sorry for your suffering, OP. It is the one thing in life that I can't abide above all else.

OP, this may be a bit out there but some say it helps…

In the midst of my 2nd dose of chemo and last night I developed a high fever of 103. I did not want to go to the ER because of all the COVID and RSV cases so I waited until this morning and saw my oncologist. They ordered two blood cultures, another CBC panel, another urinalysis and a chest x-ray. I developed a slight fever after the first dose but it never hit 101, which is the number they say is the danger level for chemo patients. I am hoping I don't have an infection. My oncologist thinks it might be a bad reaction to one of the drugs, but we'll see. It was a very unpleasant and harrowing night and morning. Thankfully, my temperature finally went down to 99.

Sounds very unpleasant R290.

Guess I better get me a working temp gauge. Almost certainly beginning chemo in early 2023.

Recovering from surgery this week.

Psychologist rated me as severely depressed. No shit!

I am so terribly sorry that you are experiencing such worry and pain - you too, Alexandrite. I have been under worry and stress lately but I think about what you guys are going through and boy it makes me snap out of it. God Bless you guys - wishing you the best!

Hi OP! Merry Christmas!!!! It is a mild and sunny day here in LA. I hope that you aren’t in pain and are able to relax and experience some peace and joy today!

Glad to be able to get on today to be able to wish you the best in the coming days and weeks. I hope your pain is under control and that you are experiencing long stretches of comfort.

Merry Christmas to everyone! I am doing much better in terms of my back pain and my fever has been gone for close to a week. Feeling good and been getting in as much exercise as my body can handle and it is really improving my whole mood. Another 2 1/2 days til my next chemo infusion so I am trying to get as much enjoyment out of my time before I have to go back.

I hope everyone is having a wonderful holiday. Grateful for you all.

Glad to hear that. Good for you that you're exercising, and best of luck this week, OP.

Great news, OP. Exercise is definitely a mood lifter. Wishing you continued good results.

Merry Christmas, OP! Hope you were able to enjoy the day comfortably.

That's great OP. I've had the flu and unable to decently exercise, so want to get back to it too. Cheers for a strong week to come!

So glad you had a good Christmas, OP and that you have been having a string of good days. May they continue. Big Happy Boxing Day hugs to you.

Third dose of chemo today and i have the pump in until Friday mid-day. I also start radiation on my back tomorrow morning for 10 days. Feeling lousy already and i developed a fever at 5:30. Trying to make it through the next 3 days. I don't even want to move.

The good news is my alkaline phosphatase in my blood went from 554 to 184 in the past two weeks, which is great. 0-125 is a normal range, and I am hoping it means the chemo is working on my bones and that I will get some extra time. My white blood cells have dropped, as well as a few other numbers, but nothing horrible (yet). Still low in about a half dozen numbers. I just need my fever to abate before it gets higher.

Good news - bad news - good news - Wow - those fevers that you have been getting are scary! You ran a high temp after your last chemo didn’t you? Does aspirin and vitamin C help you break your temp? Gosh, having radiation while you are feeling sick already - sending a prayer that you make it through the next few days without feeling terrible, Do you think that you will be able to sleep after your radiation treatment?

My oncologist thinks the fevers may be from an experimental drug I'm on (which is for side effects, not a chemo drug). I don't know how the next couple days will shake out, but I took 4 Advil last night around 9pm and It's now around 5am and my temperature is back down to normal, which is a relief. Hoping it won't spike again.

I'm not too worried about the radiation. It's 10 doses over 10 days and short. My biggest concern is if there will be an issue with me exercising once I feel better early next week. Of course, I've never had it and chemo at the same time, so we'll see.

Wishing you the best of luck, today!

It is raining cats and dogs today in LA - I hope that you are rested and cozy and out of pain and enjoying your day!

I'm almost finished with radiation for my back and it's been causing me all sorts of gastric distress. I have two more sessions to go. And I have chemo tomorrow. The rain has been bad, but i'm close to the clinic so the drive has not been too bad for me.

Good to hear it's almost over, OP. Hope the stomach issues resolve themselves.

Ask your doctor is he/she thinks Levsin (hyoscyamine) would be of any help with your stomach issues. It helped someone I know that was undergoing radiation treatments.

Are you still involved with the cancer support group? Any luck finding a therapist or do you think the support group negates the need for therapy?

Incredible to read how you are handling it all. I have my own issues and I really don't think I could handle any more the way that you seem to be doing.

Without too much detail and only if you are comfortable doing so, can I ask what your job is and how that has been managed while you are dealing with doctors and hospitals?

Hope this week is a better week for you.

Thanks so much, R307, for the advice. Much appreciated.

I have been continuing with the cancer support group and they are great. I have not been able to find a separate therapist, mostly because none of the ones who specialize in cancer patients take my insurance (or any insurance). But the support group has been helpful and is run by a specialist therapist.

As far as work goes, I'd rather not discuss what I do, but no I am currently not working because of my treatment. The last time I went through chemo I worked full time and only took off one day every two weeks for my infusion day and timed it so that my worst days would be the weekends. But this time around, I'm on additional drugs that are giving me a lot worse side effects, and with Covid/RSV plaguing us, and my spiking fevers every time I get chemo, plus the radiation appointments, etc. I have decided to do what I need to do from home until my treatment is done.

Thankfully I sold a property this summer and though I didn't get a whole lot for it because of what was still owed, I have been able to use that money to live on while I'm not working. It's not ideal and I would have preferred to invest it, but I'm grateful that I have it to help me while I can't work.

Thinking of you, OP. Hope you are having a good, pain-free as possible weekend.

Thanks for updates OP. It can't be easy for you. I think you're just about done with the alien laser beam treatments, and hope your GI issues will settle down. January can be a tough month anyway, so get cozy for now and prepare for exercise sessions ahead.

Been MIA for a few days. I think the radiation has caused severe diarrhea, which has been going on since Sunday. The big problem is that I have the urge to go every hour and it's only mucus, nothing else. It's causing great pain and I can't even sit down for long periods of time. This is my fourth day with it. My oncologist sent in a couple Rx to slow my system down, but I'm worried about constipation. It's been horrible.

The constant anxiety and worry that you must go through daily must be overwhelming - I appreciate how stressful this must be! Sending you my best wishes and positive thoughts - I hope that you can get some comfortable rest.

Hi OP

Have any of the new medications helped with the diarrhea? I'm the person above that mentioned Levsin, and while I mentioned in reference to radiation treatments, I was also prescribed Levsin when my system was moving too fast and I had constant diarrhea and it was very helpful.

Whatever they prescribe, I hope it helps and you've gotten some relief.

Apologies in advance for the graphic description to follow:

It's not even diarrhea, it's just mucus. And after I expel the mucus, I then have about five or so bouts of what feels like dry heaves (only from the other end). It's horrible and I feel like I'm going to turn myself inside out.

My oncologist made me come to the clinic today to do blood work, a CT scan of my pelvis, get fluids, and I talked him into a prescription for an anti-spasmodic. He also gave me steroids to bring down the inflammation. I was terrified to leave the apartment because I was worried I would have an accident. They brought out this enormous bag of fluids for me and I was like- couldn't I just drink it and get out of here?

What a nightmare! I hope that the medicine, fluid and steroids get that situation to settle down - you are battling like a warrior!

Thinking of you OP. Hope you're nearing the end of the worst of it.

Nothing has helped and my plan now is to go to the ER around 6am, hoping it's not terribly crowded. I'm skipping Cedars and going to St. John's because the last time I went to Cedars ER I waited nearly 10 hours to be seen. I'm terrified to go because I have no control over when the spasms happen or how intense they are. I wanted one of my doctors to admit me, but he said he couldn't.

It's now been seven days, I've taken two full days of steroids and anti-spasmodic drugs and neither has helped. I'm worried I'm going to need surgery on the hemorrhoids.

Damn OP. I’m hoping and praying for you. Sometimes steroids take 4-5 days to work, but you’re doing the right thing by going to the ER.

Thank you, R318. What's really freaking me out is how much mucus and blood keeps coming out. I know the blood is from the hemorrhoids but where and why all this mucus and rarely anything else. I just hope the hospital can figure it out.

Do you have a friend or family member or even a good neighbor who can take you? Again - I am so sorry that you are going through this terrible uncertainty and pain.

Checking in on OP, please get back to us and let us know how you’re doing. I am thinking OP is in the ER or hospital right now.

OP I'm in West Hollywood- do you need a ride to St. John's? Is it the one in SM or Oxnard?

OP, this must be hell for you. Most certainly keep us updated. I wish I could help more tangibly than sending support via words.

r322 You are a truly good soul. (I am not even going to ruin it by asking what are you doing here)

Thank you so much, R322. I drove myself. Wasn't much help, but I followed up with a proctologist this morning who feels this is going to last for another 4-6 weeks, but gradually improve during that time. I have to start eating more though. I went to pick up an Rx after the appt and ran across the street and almost blacked out.

I've mostly been in bed so I can stay off my ass.

Good to hear from you, OP! Quite a few people here worried about you. Ugh, I’m sorry for what you’re going through.

I'm sorry. I have just been in so much pain I've been trying to stay in bed as much as possible. I didn't mean to make anyone worry. I appreciate the concern. I really do. Thank you.

What are you eating, OP?

Sounds better I guess, but if you’re in a bind, I’ll be more than happy to drive you to the hospital. Thanks for checking in. Between Brian, Joe, and you, DL has softened my little black tarry heart.

I'm not eating much. Mostly protein shakes and yogurt. I went to a proctologist yesterday who said I have radiation proctitis and that it would take about 4-6 weeks to heal fully. He scoped me and said one of the hemorrhoids was thrombosed but that it should be okay and to call him if things get worse.

I got home and I actually felt better, the spasms were quieted somewhat. Then later in the day I had an urge and deposited what seemed like a fuck ton of blood into the toilet. The hemorrhoid must have burst. I called his office but he was gone for the day. I bled again about a half hour later and then stayed in bed the rest of the night. There's been a little bit of spotting, and now I know what it feels like to be a 12 year old girl in a Judy Blume novel.

I am worried about infection and have been trying to keep things clean. I can't even celebrate that the spasms have lessened because of this happening. I'm really bummed this morning.

OP, so sorry you're continuing to have these awful side effects.

Wondering - if you are up to it - whether hot or warm baths would help at all. Relax you, ease the pain, and help to keep the area clean?

After hemorrhoid surgery it was very helpful for me.

Oh god, that's horrible. Get on the phone and if they try to give you the run around, show up and force your way in to be seen Infection is indeed something to be concerned about. Not trying to freak you out, but sepsis is a concern for sure.

I did get the procto on the phone late yesterday and we discussed it. He told me what I needed to do and that the worry of infection was really minimal. I am a very clean person and a bit of a germaphobe so my natural inclination is to keep things clean.

I thought things were getting a little better yesterday but then I got rocked with 2 hours of spasms and I had to go to bed with a valium. At least the bleeding seems to be totally finished.

This sounds like a nightmare! What must be so awful on top of the pain is the fear of the unknown. Since you have been seen, you have your medication - it sounds like they are saying ( and I would find LITTLE comfort in it) that hold on a few days - like giving birth - in a few days this will pass. You must be beyond exhausted and then the exhaustion of anticipating the pain. Try ( yeah right - easy for me to say) to relax and breathe and try to ride it like a wave. Hope you have a better day!

Yes, the uncertainty has been tough. Yesterday was a very good day. I had a few minor spasms but was able to sit up for a few periods. But now I'm expecting another bad day because I'm trying to track the patterns, but are there any patterns? No idea. I think the best I can do for now is just be grateful for the times where things calm down and I get a break, and hopefully they will be longer and more sustained.

One thing is that I am starving, but I'm so afraid to eat because I don't want a repeat of Thursday. I've been trying to do liquid meals but I wanna eat.

Try a soft boiled egg and a little toast, or rice in chicken broth. Just a little bit, for a semblance of normality. I just got over covid/nausea and eggs were all I could tolerate. Sympathies OP.

I hope you didn’t have a bad night and that you have been able to hold something down. It is really cold today in LA - I hope you are warm and settled down and can relax a bit today. I was worried about a bunch of “stuff” this morning - but I thought of you and your daily worries - hats off to you - I realized - I’m just fine. Have a good good day!

Hey OP, a bit worried about you. How are you doing?

Hey all-

I am, thankfully, on the mend. Still having some issues but it has improved by about 90%. Saw a new proctologist on Wednesday who prescribed a suppository that my insurance doesn't cover ($800!!!), so we're looking for an alternative and I have a feeling that once I get that medication, it will help even more.

I am definitely going to resume chemo on Wednesday.

Thank you for asking

Jesus christ OP is that suppository 18K gold?

90% OP, good to hear.

[quote]Saw a new proctologist on Wednesday who prescribed a suppository that my insurance doesn't cover ($800!!!), so we're looking for an alternative and I have a feeling that once I get that medication, it will help even more.

GoodRX is your friend. My mother's doctor recommended it for an expensive drug that she takes, and it worked out great. You could also probably get it cheaper from a Canadian pharmacy, but then you wait for shipping.

Yes, I found a coupon on GoodRx that reduces a smaller number of the suppositories (12) to $48 so I'm going to pick them up tomorrow. That's still $8 a day for this stuff, but I'm only getting a few instead of all 60 until I know they are going to help.

Back to chemo today. They gave me the private room so i could be in bed and not put any pressure on my rectum, which really helped. Weird thing was that when I got the Oxilplatin today, it caused a lot of inflammation in my rectum for about 90 min, along with itchiness and a runny nose. The last two happen every time, but this is the first time i'm had hemorrhoids while doing chemo.

My blood is in very good shape. Only one minor number is high, everything else is normal. But I got home, spiked a 102 fever and got bad chills so I'm on the couch under a blanket with the heat on. Took 4 Advil.

Hang in there OP. It sounds like things are going in the right direction with your numbers.

OP I just came across this thread today and read it from the beginning. I am so sorry for all you're going through. Please keep posting when you can. You have friends here.

Thank you!

OP, I am back after the site being on prime time for me for two months! I paid the $1.99 in the end. Love you, man.

Thank you. Feeling much better today. Wearing my pump, so I am couching it and watching movies and napping on the couch. I get the pump removed tomorrow and am looking forward to freedom and a long shower!

OP, I'm not sure how your pump is attached, or what other attachments you have, but I have a PICC line and at first it was very frustrating trying to shower without getting it wet. And then I went on Amazon and started searching and found this plastic waterproof bandage that comes in all different sizes. It sticks beautifully and STAYS on even when showering and nothing underneath gets wet. I get the PICC line dressing changed every week and one bandage manages to stay on and keep everything dry for that entire week.

If you're interested, it doesn't have an actual brand name but if you search Amazon for PICC line waterproof shower cover you'll find it buried in the results. If you have something on your body that needs waterproof covering this is the stuff (I think it's like the stuff they use to cover brand new tattoos?) Anyway, good luck to you, OP. I just had chemo round 4 yesterday. One (rough) day at a time.

Here;s a link, OP, and anybody else who might need this stuff. It's great!!

Done one chemo and a few radiations. Will prob need a picc line for the weekly chemo. Going to keep that bandage tip in mind. Dread doing chemo every week, that one session left me feeling sick for days. Glad you are doing better OP and finding solutions.

I will check it out. What I do when I get home from chemo is I wash my upper body with washcloths and hibiclens at the sink, then I get into the shower with my pump resting on a tv tray outside of the shower and the tubing all stretched out. I have a handheld shower head so I used that to wash the lower half of my body and my back, and a bath brush to scrub with. And my friend comes over right after to wash my hair in the kitchen sink. I installed another handheld shower head that I attach to the faucet for that.

After that, I can pretty much go a day without a shower until I get the pump out on Friday.

But thank you, R349. I wish you the best with your chemo. Let's all get through it together! And you, too, R351!

Oof, made the mistake of watching Spoiler Alert tonight and now I'm feeling all melancholy.

Well - um yeah - just don’t follow it up with Terms of Endearment! ….. Drown it out with a good dose of Seinfeld - or Mannix!

Mannix! I love it. I've always wanted to see an episode of that. I think I'll seek it out. : )

Mannix is fabulous! Great idea r354.

Besos, OP. I hope you sleep well tonight. Thanks so much for your updates.

Hi there - just checking in to see how you are doing this week. It is really cold in LA - -for us anyway - just hoping that you are comfortable and not battling fevers.

Hasn't it been cold? I have had my heat on and off. I sleep with it off because the prices have just gone through the roof for gas in LA this winter, but I put it on for a couple hours in the morning and at night when I'm on the couch.

I have been doing better, actually. I just wish my bowel movements would be back to being more regulated. I used to go once a day, if that. Now I'm going 20 min after I eat, every single time. And it's like I can't hold it, and when I go, it's a tiny bean most of the time. (sorry for the TMI.) But I think (I hope) that will regulate, also. And it's not that terrible a thing to have compared to what I was going through three weeks ago, when I wanted to be dead.

Chemo is in 2 days.

I will say (maybe because of all the weight I lost during the first two weeks of this) that I have been eating a lot more, and I have been craving sugar, which is BAD. I have got to get ahold of myself and knock that shit off before I start gaining weight. (Plus sugar is not good for cancer. It feeds it.) I might come on here when I feel the need for sugar and get you all to yell at me until I decide not to eat any! I know you dataloungers can do it!

Thanks for checking in. How are the rest of my chemo friends doing? Please feel free to post what's going on with you if you feel like it. Everyone has been so nice here, and I would be so happy to help anyone else going through this with a commiserative ear.

Thanks for reporting in, OP. Glad you're feeling better. It's true, sugar feeds cells including cancer cells, but stopping sugar doesn't necessarily stop cancer. What the research shows is that sugar contributes to depression. That's reason enough to curb it while you're feeling especially vulnerable during treatment and recovery. Here's the science...

Well I like to think that your pooping is healthy- babies and animals poop right after they eat.

I suppose you can indulge in fruit- at least that’s healthy. Try frozen red seedless grapes - like micro popsicles.

Coming down the backside of chemo round 4, by far the worst yet. Last week was a week of unadulterated hell. But it's starting to level off, and hopefully will only get better until I have to face chemo round 5, a week from Wednesday. Then just one more to go after that. I feel every bit of your agony, OP, it's not very different from mine. I spend every one of the last ten days wrapped up on a heated throw curled up in the recliner. Surprisingly, I slept more than I did during the other chemos, I guess that counts as a positive.

And the cold! It's been SO freaking cold in Los Angeles! I even mentioned it to the doctor and he agrees that the cold IS a contributing factor to my feeling so crappy. I'm sure the OP and others in he same boat as me will understand when I say I just want this sh*t over with no matter how or what.

R361, do you mind my asking what kind of cancer (or which chemo drugs you're on)? It sounds like we are on opposite chemo schedules, so your bad Wednesday is my good Wednesday. And my Wednesday is actually a 2 1/2 day thing. I'm at the clinic all day Wed getting infusion, and then I take the final drug home in a pump attached to my port. It drips into me for the next 48 hours and then I go back to the clinic on Friday midday to get the pump removed.

And if you don't feel comfortable saying, do not feel obligated.

Happy to come on here and (try to) cheer you or commiserate during your bad day(s). We can talk shit about the nurses. : )

R359, I know it won't help keep the cancer away, but I very much want to eat more healthily this time around than I did last time I had cancer. (And I agree about the depression thing.)

When I did chemo 7 years ago, my oncologist was awful, never gave me any guidance about what to eat and not to eat (and I asked) and I wound up eating a lot of starchy, bland food to stave off the nausea. I also ate a lot of sugar because I was craving it like crazy. And I got blood clots early on, so my exercise was curbed a bit. I wound up gaining 40 lbs in 6 months (which I subsequently lost).

This time around, I was doing really well, food-wise. I had maybe gained about 7 lbs since September, but that was more because I'd had to stop exercising at all due to first the really bad back pain, then the radiation proctitis. But since Christmas, the chocolate has been creeping back into my diet here and there. I hadn't had any sweets for two years.

Thankfully, last Thursday I got back on the treadmill for the first time in a month, and I'm back to where I was (maybe a couple lbs more) weight-wise before I got sick last summer due to my losing so much weight initially with the proctitis. So before I start going crazy with sugar, I have got to knock the shit off. I do not want to wake up four months from now with an extra 25 lbs on me. In fact, I'd love to lose 10 lbs. But if I get into the 200 lb range, I will flip the fuck out at myself. So starting today, no more shit food.

Now that I have been back at chemo after the proctitis calmed down enough (and until it is fully healed) I have been stopping solid foods midday Monday until I get home from chemo on Wednesday afternoon. I just do protein shakes from Monday night through Wed morning so that there's less of a chance I'll have spasms or the need to defecate at the clinic (which isn't easy when you're tethered to a pole for 5-7 hours.) I'd rather be hungry for a couple days than shit in public while having poison pumped into me.

Man, I am chatty today. Sorry!

Dr. Greger is firmly a plant-based guy but a lot of his videos are well-researched and cite sources (which you can look up and read yourself if you want to take a deeper dive). Just posting for any who may find it helpful. There are other videos on the channel specifically dealing with diet and cancer and diet and chemotherapy.

Thanks, R364!

No worries. I've found that getting leafy greens and cruciferous vegetables is actually delicious if it's done in a very good salad recipe (and all good salad recipes involve a good dressing). Maybe people with delicious recipes that involve cabbage, broccoli, brussels sprouts and various leafy greens could post?

I'll post one I love (you could cut down on the cheese but still use some and also throw in some kale, there's also comments below the video making more suggestions).

I love kale!

For the kale lovers... (kale is a green leafy AND cruciferous, so extra super healthy)

I am glad that you are feeling a little better! I have never gone through what you are going through - BUT - I am a champ at struggling with and slaying the sugar monster - these ideas are for when it gets stuck in your head and you wrestle to move on without sugar : A - Get two or three different jars of. Different types of pickles. The pungent taste of the pickles sort of flips something in the brain……B make some easy home made Chicken salad or Tuna Salad - home made so it doesn’t have sugar. When you crave sugar a small flavorful bowl should knock the sugar thoughts out. …C get some nuts (if you can digest them!) and sprinkle them with cinnamon….. Or enjoy some chocolate - you have been through the wringer! …… The LA super duper damp cold starts tomorrow. Stay well and Warm everybody!!,

Ooh, pickles. Great idea!

I am staying away from nuts until the proctitis issues are done completely, but I do usually enjoy them.

Oof, I just looked at the weather. Rain on Thursday for three days and very low temps (for LA). And I will likely have a fever on Wednesday, so I will be cranking up the heat!

I don't mind, OP. I just don't want to hijack your thread.

I have endometrial cancer and it's my own damn fault, If I'd jumped on it the moment I started having obvious symptoms (bleeding last January) I might be in a better place, but we thought it was something else because I have a history. I didn't get diagnosed until late August. And ended up with a Stage 3 diagnosis. The drug combo I get is called Carbo Taxol. I'm actually on three week schedule. And because I started with a very un-supportive doctor (now THERE is somebody to talk shit about!), I actually quit chemo halfway through. But then I changed doctors, got much better support and advice and restarted chemo with six weeks between round 3 and 4.

Chemo day itself isn't bad, it takes about three hours for the infusion and then I get to go home and ride out the side effects. And just like everyone said, each successive round has been worse. I seem to hit rock bottom around day 5 and then stay there until about day 12 before I start to claw my way out of the abyss. The brain fog is the worst - some days it feels like five minutes lasts a billion years.

Pickles!! That is so weird - last week a friend brought me some food and included were some deli salads like coleslaw and cucumber tomato salad and green bean salad - all dressed with the same basic vinegar dressing. Apparently my body was craving whatever enzyme or nutrient was in those salads because I practically inhaled them. Normally, I just mildly enjoy those sorts of salads. The human body's reactions are so weird.

R371, I am so sorry that you had a bad experience with your doctor, but I am very happy and relieved you had the foresight to switch doctors. When I had cancer the first time, I had the WORST oncologist. He treated me like garbage once I had decided to go into his care (when we interviewed him, he was completely different). He tried to bully me, he was indifferent to my concerns, visibly annoyed when I asked questions and tried to tell me I was crying wolf when I (correctly) thought I had a blood clot and then pretty much heckled me when he found out I was correct.

I also tried to switch doctors mid-way through. I interviewed with a doctor across the way who was prepared to take me on, and then mysteriously decided he could not treat me. I found out months later from another doctor that he and my oncologist used to work together and my oncologist convinced him not to take me on. Finally I just gritted my teeth and got through the treatment. And once I was in remission, I switched doctors for my maintenance care and have been much happier. I hated him. So good for you for getting away from your bad doctor. And if you ever want to tell your story about him, I am all ears.

Do NOT beat yourself up about not investigating more thoroughly sooner. We are not doctors and it's also entirely possible had you gone, a doctor would have told you the same thing you assumed. Doctors like to solve problems, and for most of them, solving problems means getting you to go away.

Here if you need me, and we'll get through this together.

🤒 Does the teledoc actually know you, or was he just a random hookup who makes housecalls?

Hey 371, I also have Stage 3 cancer, going through chemo/radiation now. Had I sought treatment earlier then my prognosis might have been better. 53% chance of dying within the next 2 years. Whatever I am going through with the treatment, and I am only really getting started, I keep coming back to that bleak survival stat. It all sucks so much.

OP here, R374. I know it's difficult, but you have to stop dwelling on the percentages, especially if you are just starting treatment. You have no idea how your body will react to the drugs and people with much less of a chance have made it through and are still here to tell the tale.

As both a cancer survivor and a current cancer patient, I know that the thought of dying creeps in very insidiously and uncontrollably. It is very easy to go down that path and get lost. I've done it many times. I still do it, but I also do my best to make myself stop thinking about it. It's really hard to stop sometimes (at least for me, and I imagine others who are facing this). But you cannot get mired in predicting your own death.

If you haven't done it yet, put a plan together. A will, final wishes, anything that you need to make sure gets done IF you go, and then don't think about it until the time actually comes where you have to. Because dwelling on what if and when and how much time does you no good at this stage.

I am Stage 4, because it's a metastasis. I know what the odds are of that, and I know that even if things continue to go well, as they have been, that I've probably only got a few years. That thought creeps in a lot, especially because I'm alone so much with my brain, which is always a bad thing, but you have to not give in to it. It's not about deluding yourself, it's about keeping the stress out of your body and mind so that you can be part of that 53% who does survive.

I was sort of stuck in a difficult place. Endometrial cancer is a subset of oncology and is treated by a gynecological oncologist, not just a regular oncologist. And most hospitals only have one on staff because there are so relatively few gynecological cancer cases. I'm with Kaiser and I got assigned to the one gynecological oncologist they had at my facility, Unfortunately she (yeah, she. You'd think a woman would understand better) had/has a very specific opinion of herself and what her patients should and shouldn't get and I didn't have the luxury of time to look for a different doctor at another Kaiser facility. Communication is her big problem - there simply isn't any. You meet with her at the appropriate time that she deems necessary and outside of that it's as if you don't exist. You can't imagine how many phone calls went days before being answered (by the nurse) if they ever got answered at all.

I was so fed up and disgusted with the frustration of trying to deal with her that I quit after the third round of chemo. But then I found out they brought on a second doctor to take some of the case load, and I reached out to him for one of my questions and got an answer and an appointment with him within a day, and communicating with him was a total 180 from her. We had a couple of long talks and he convinced me to continue chemo and made several suggestions and changes to the whole regimen that put me in a much better position. Things she never suggested. So I'm on chemo round four, the first one with him, and its going a whole lot better then the first three went. And we've still got a couple of other things to try that should make rounds 5 and 6 even more tolerable.

The odds are still not the best - I'm looking at a 67% survival rate at 5 years out. But that's such an abstract concept that I just don't think about it. I just want to get back to my normal routine and not feeling sick all the time. And then whatever happens, whenever it happens, will happen. I've done all I can to help the outcome, but ultimately its going to be out of my hands.

I agree the stats are informative and not definitive.

Just having a freak-out OP and you were correct to take me to task. It wasn’t my intent to be Debbie Downer. Maybe it comes with the territory. Yes one of the first things I did was update my will, write down my final wishes, and begin to get my house in order. But one bless in this cancer business is I feel as if I’ve been give a second chance with all my relationships. This time last year I felt very lonely. And now I get to meet new people every day!

R377, I don't get the idea that you are angry about it, but I honestly didn't mean to make it sound like I was taking you to task and I apologize profusely if I upset you at all. Tone in writing can be all over the place, and I meant it as encouraging. But I liked your message and am happy to hear you're making new connections. That's wonderful.

R376- My odds for going five years when I had my first bout with cancer (colon) were 65%. I went 6 years. I say this not to upset you, but to let you know that you have got to be diligent about all of your follow-ups and make sure that they figure out how to give you the scan or test that will most definitively tell you what's doing in your body post-chemo. I was given PET scans the first two years, then my (horrible) oncologist told me my insurance wouldn't cover them anymore. So I went to a new oncologist who got it pushed through for two more years. However, the PET scan only did from chest to thigh because colon cancer typically comes back in the liver and the lungs. Mone came back in the skull, where they never in 6 years bothered to scan because the odds were so minuscule. Mind you, they never NEVER mentioned that minuscule chance of coming back in the head, not one oncologist I ever spoke with. I feel this could have been taken care of much earlier had they just scanned me another 18 inches and kept it a PET, because by that point it had settled into some of my bones and that is frequently game over. CT scans don't pick up those hot spots, PETs do.

So you do your own research and ask tons of questions when the time comes. Be pro-active and be ready to jump ship for a third oncologist if it's necessary. Also see if you can find an online support group for people with your specific type of cancer. I am telling you, they know EVERYTHING and they want to help you. But 67% odds are actually very good and I think that you stand a fantastic chance of beating this.

Oh fuck, I've been home 2 hours from chemo and the chills and fever have already started. I have the heat on and I'm wearing a hoodie and under a blanket. Hopefully I can ride this out quickly. I might be back later, but right now I need to get as warm as possible.

Oh wow - and it is SO COLD out - really cold - getting colder in LA. I’m sure that you probably have an electric blanket or heating pad. In a pinch you can put a rice sock in the microwave. Sorry - I sound like “Sue Ann Nivens” - sending out good positive thoughts to OP & Co - I hope you all have a if not good - not awful night!

Keep checking your internal temp OP! And feel toasty soon.

Hoping all is well - it has been storming for hours - there is still more to come - plus blizzard events. I hope that you all are warm and have everything you need to power through the weekend.

OP, how are you today? Thinking of you.

OP? We're getting worried about you....

Oh, Dev, they’ve been poisoning me.

Hey All-

Sorry, just got back from chemo about 45 min ago. Doing okay. My numbers had dropped fairly badly in WBC and neutrophils, so last week I got a medication to inject in myself for four days. It brought my numbers up (according to today's bloodwork) but it also caused palpitations in my chest and back that were similar to an anxiety attack. They would come and go, and only happen when I'd gotten out of the chair and moved around and then sat back down. So I started taking xanax to see if that would calm them down. Yes, but it made me sleep a ton.

Thank you for the concern. I apologize for not being in better touch. I will come back on Friday to do the happy dance when I am one more chemo round finished!

xo

Thank you for the update OP. Stay warm and dry in this cold and soon to be rainy weather.

Only one more session OP, hang in there.

Thanks for checking in, OP. Good job on your chemo round and taking care of yourself. Stay cozy.

Hi OP - Was this week your last round of chemo? I hope that you are well. Happy St. Patrick’s Day!

Hey everyone. Been doing okay. Have been occupied with a bunch of scans over the past couple weeks. Did a CT, MRI and PET of both my brain and torso. I saw both oncologists on Friday. The news, thankfully, is promising.

The stuff in my lungs seems to be gone. The remainder of the tumor in my head has shrunk, and the mets in my bones have all gotten smaller. I am not out of the woods by any stretch of the imagination, and I know this is a respite, not a cure, but it's probably the best news we could have hoped for, and both doctors are very pleased and encouraged.

I am very happy with the news. It means I get a few more years, I think. At the very least, I can hold off on packing up my stuff for a little while. Not meaning to be facetious at all, but I've kind of been holding my breath on whether I had to start doing that so as not to leave it for friends afterwards (and make larger plans in general for now).

So we will continue with the chemo for five more doses and then at the end of May, we go back and do the scans over again to see where we are and figure out how to go from there. I'm taking nothing for granted, but I am super relieved. I felt like the treatments had been doing something, but you never know until you really get in there and see what's what.

How is everyone else doing who is going through this right now?

Happy to hear that. I wish you continued success in your treatment, OP. And to all the others in the same boat, as well.

Fibronose

Glad to hear this, OP - especially the clear lungs! It makes everything you endured worth it. And personally, I wouldn't worry too much about packing up your stuff. When my parents died, I found that suddenly things become categorized as the "Really Good Stuff" (their wedding rings, any really expensive jewelry or art, my father's valuable coin collection); the "Good Stuff": the Waterford pieces, the sterling silver, her Belleek pieces); the "Family/Sentimental Stuff": mostly photographs, signed/autographed books or photos/albums, some travel mementoes (my parents traveled extensively and brought back all manner of interesting little objects); a gorgeous tablecloth embroidered by my mother, etc) Once these are given or designated to family or friends, this is where you can kind of get off the bus, because next comes "Regular Stuff": furniture, chairs, cabinets, bookshelves, etc etc. Let your friends/heirs decide whether to keep/sell/donate these types of things. And finally comes "Yard Sale Stuff:" kitchen appliances, utensils, rugs, clothing, miscellany. You can hire a service to do an estate sale for you, but they tend to take a pretty hefty chunk. We had three yard sales on three successive weekends and made over $700 at each one. And that was 15 years ago. If you take care of categories 1-3 and designate a family member or close friend to take over from there, you'll be OK. Your time might be better spent sitting in the sunshine at a botanical garden or an art museum or some place you loved. Best wishes to you.

Wonderful, OP. Happy to hear you're feeling a little more balanced. Enjoy some weeks with no doctors or treatments.

. Not quite yet, R396. I still have ten weeks before I finish chemo. And this news is going to get me through it much easier!

But thank you! : )

Hi OP. That’s very good news. Well done. Heaven knows it’s an endurance test.

I’m finished radiation and having a break before 4 rounds of chemo. My oncologist wants to start me on weekly chemo then switch over to every three weeks. I don’t know what the difference will feel like. She says it has the same overall result at the end.

R398, have you asked what kind of side effects you can expect to experience with the chemo? Tell them you want to know everything possible so you are aware of what's normal. Also, do yourself a favor and keep a daily journal of any side effects you do experience, how long they last, etc. and just anything that seems out of the ordinary just in case, so you can bring it up with them. You think you're going to remember and you don't, so it's best to jot it down every day.

Let us know how it goes. And good luck!

Op - I know what you mean about the underlying anxiety of dealing with your “stuff” at the same time as dealing with yourself. …. My mom is 87 had a stroke 2weeks ago, has a necrotic hip and dementia. It is just us - no family and I have rented this house for the last 10 years - and money is tight. If / when we move - most likely it with be THE move - the LAST move. In years past packing up and moving was a new chapter - a new adventure. Packing up and disposing of a lot possessions is a little “too real” at this very moment. I can see it would be very difficult to be going through your stress - to have the pots and pans and lamps and skis on your mind!

OP, I am so glad to hear the tumours in the lung and brain have shrank. Thats really fantastic news. Im curious, are they treating it with the same chemo they did the first time you got colon cancer? Im wondering since its the same/similar type of cells it may react the same way.

Thank you, R401. They are treating it with the same meds as before. They have added one additional medication that's new to me (which I just found out this past week is also a monoclonal antibody). And I did the two courses of radiation (for head and back), but I have a feeling the radiation did not do much of anything for my back.

I had a weird experience last night. I decided to buy an air fryer/convection oven and I was presented with an option for an extended warranty. I will usually get them if I order from Amazon because they are so easy to use. My choices were a 3-year plan and a 4-year plan and I had to stop and think... Am I still going to be alive in four years? Should I spend the extra $12. That was a first.

The happy news is that you felt well enough and forward thinking enough to want to buy the oven in the first place. Good for you - enjoy it. I can see where the warranty portion might give you a stomach flip!

Ugh, horrid chemo today. The Oxilplatin caused a ton of inflammation and allergy responses, then I got home, my friend came over to wash my hair and then we set up a David Bowie Monopoly set. After an hour of feeling horribly queasy, I asked he to leave. I took an edible, and the nausea was gone within 20 min or so, but I was very high for my group meeting. Fever and chills have just arrived, so I hav the heat blasting and I'm under a blanket.

Not sure why today was so terrible, especially when the past couple sessions have been so much better in terms of side effects. I'll weather it. And if the nausea comes back, well, there's always more edibles.

I’m so sorry OP - that is so crummy. At least you have your edibles on hand. Stay hydrated - and know that you have friends that care. Try to get some rest.

Thank you, R405. That means a lot. I appreciate it.

JFC, OP! Don't know how I missed this thread, but just stumbled on it tonight and have spent an hour and a half reading about your journey -- even with a lot of skipping ahead. So happy to find that you're still alive and lucid, despite all of the horrors.

Last Fall I cut back on datalounging because I had spine surgery and was out of it (on opiates for months), which is about when you started posting. I vaguely remember a thread "Ok DL Doctors & Nurses, Diagnose Me" and might have rolled my eyes and replied "go see a fucking doctor".

Did not see the part where you mentioned that you'd had colon cancer 6 years prior and that it came back. Reading your odessey has been gripping.

About 10 years ago I had four years of treatments for colorectal cancer (with ostomy bag for a year, which was thankfully reversed), then an unusual spread to a kidney a few years later that was removed. That wasn't surprising because the colon had become fused with that kidney. Still in remission many years later (annual abdomen and lung CT scans scheduled next month, no symptoms). Your stories of second opinions and firing doctors brought back memories. I'm deeply sorry that you've had to endure mets to brain and bone and accompanying surgery/chemo/radiation. Am feeling damned lucky. While reading this I said to my partner: "you know, they've never scanned my brain..." to which he said, "Oh, don't worry honey; they won't find anything there". Asshole.

My heart goes out to you. It's comforting to know that at least you seem to have good health insurance (hopefully NOT with Kaiser) and that you're in a large metro area with access to the best care.

Oh my gosh, R407, you are very funny. Great read. I am feeling terrible right now, so I'm trying to distract myself. My high is starting to ebb. I've been dozing on and off in a recliner trying to watch the Mariners game, but I keep falling asleep and my head keeps drooping and my neck is all messed up, so I'm now sitting up and hanging out on the internet.

I have so many questions about your treatment and how the cancer came back in an unusual place (though the fusing makes sense that it would come back there). They tell you things are so by the book w/ colon cancer if it hasn't spread past lymph nodes, and yet, there it is, if you know to search for it, colon cancer metastasizes in the brain on rare occasions. What I also find super maddening for people like us is that insurance (and I do have good insurance) will only pay for yearly CT scans after maybe year 3, when we should be doing PET scans. I can't believe that my bone mets came up that quickly that they were nowhere to be detected in my CT scan I did in March 0f 2022, yet by September, they were all over. CT scans aren't going to find that, PET scans are. I appreciate you sharing your story on here. Where in the country are you (if in the US)?

I'm in a weekly support group via Zoom and tonight I met someone who was diagnosed w/ colon cancer. it's spread to her liver. She went through chemo first, then she's planning surgery and her surgeon wants to give her a full hysterectomy and take out her entire colon (even though she has no cancer in the ovaries, etc. and her tumor in the colon is in one specific place. She's not really asking why she needs to have so much removed and what would happen if she waited. I don't want to tell too much of her story, but her doctor has said because of her age it would be a good idea to take out things that could possibly become cancerous. But she's 51. Not sure why she won't get a 2nd opinion and we've urged her to.

Hi Op - I hope that your pain and discomfort didn’t stay with you too long . How are you feeling? Have you tried out your new air fryer?

Reading this remarkable thread for the first time and hoping you are doing as well as can be expected, OP. You have my utmost admiration and well wishes.

Hey all-

Apologies for not posting more. Had my 10th dose of chemo on Wednesday. The nausea has been so terrible the past couple infusions. I don't know why. Reflux has been terrible, too. But I have two more rounds, so there is light at the end of the tunnel.

Monday night I went to a Mets game. Haven't been to a live ballgame in probably 15-17 years and have not been to a Mets game since I left NYC. They played the Dodgers in LA. Had great seats, went with a fellow Mets friend and though I was nervous to be in a crowd, I stayed fully masked. (I only saw one other masked person.)

I was surprised at how excited I was to be there. And I had such a fantastic time. It helped that the Mets won, but man, it felt good to be out in the world and among people and having fun. We found a secret stash of Mets fans towards the end of the game and hung out with them for the last 2 innings. But it put me in a great mood for the next couple days. It just did wonders for my soul. And I'm still carrying that happiness with me through all the nausea going on right now.

Good for you OP and congrats to the Mets, even though I was raised to abhor them.

OP I’m sorry to see you’re feeling ill. Chemo certainly sucks, but glad you only have two more sessions. And I’m really happy to see you had a great time. Don’t be afraid to venture out and enjoy. Stay masked of course (it’s smart even without Covid around). Thanks for checking in!

OP, so very glad to hear you're able to go out and have some much-needed enjoyment. Your post makes my weekend happier! Please keep us updated as you're able?

I think I might be adopting a cat this weekend.

I have really been chasing the joy I felt at the ballgame last week. It did ebb somewhat, expectedly, but it sure left a hunger that I didn't even know I had. I tried to think what would give me that kind of joy on a more regular basis, and I realized that loving and caring for an animal certainly gave that to me in the past. Both my long time cats have gone and I have been without a pet for about 15 months, before my current diagnosis. These were the first animals I had as an adult, since much of my early adult life was spent living in NYC and moving from place to place, and also living in very small apartments. I never wanted to subject an animal to either. About 4 years into living in CA, I adopted a cat, and then a year later, another cat. They were with me for 16 and 13 years, respectively. Because they were with me for so long, and really the only pets I've had as an adult, I was not ready to jump into pet ownership so quickly. That's just my own feeling. I don't look askance at anyone who does get another pet quickly. It's a personal decision.

When I got diagnosed, I was glad I had not gotten another pet, because I knew it would likely outlive me, and I have no one to take a cat in my life. My few friends are either not cat people or they are allergic. And what's left of my family is all the way across the country.

I emailed my old petsitter, who cared for one of my cats close to the end of his life, when he was on subcutaneous fluids, and I had to be out of town for 2 months on a job, and she did a wonderful job with him, and was lovely and sweet. I told her what I was thinking. At this point, I would never adopt a kitten. The cat I saw online is 6 years old, and could easily live another decade. I, however, will likely not. Yes, miracles happen, but they are not on a first name basis with bone cancer. I think I have five years in me and I surely hope it's more, but I am realistic.

I asked her if I got this cat, could I name her in my will as his guardian if/when I die, and also, if there came a time before that where I could no longer take care of him, would she help find him a home. I know she's pretty well connected in the animal rescue community here. When my last cat died, I asked if she would take all the leftover unopened Rx cat food, medicine and lots of boxes of litter, and donate them to whomever was in need.

She very enthusiastically said she would do whatever I needed, but also said to stop focusing on how much time I had left and to just make the most of whatever that time is. And she's right. I don't know why I've been so hyperfocused on it the past few weeks. I have bouts of it, but they usually come and go. This one has stuck around and I wish it would leave. I just can't take on the responsibility of another life unless I can make sure it's taken care of after I'm gone. But she put me at ease, so I am going to go meet this little guy tomorrow, and perhaps if he chooses me, I will come home with a new roommate.

I will let you all know what happens. Thanks for listening.

OP, I hope you have a new and furry roommate tomorrow! Looking forward to hearing all about it.

OP - that made me tear up!! Wonderful, wonderful for BOTH of you. What a lovely new adventure for the both of you . You have thought it through and will make his little life as secure as you can. What a lucky Kitty to share your life with him now!!!

I'd like to see a picture of your new animal, and all the details. I'd be lost without my parrot.

If he picks me, I promise to post photos. : )

Hi OP, haven't checked DL in a few weeks. Glad to read that you sound lucid.

I'm in SF, am also a baseball fan, and similar what r412 mentioned, was raised to abhor the Dodgers. Am delighted that you enjoyed the game you went to! Stopped following baseball since COVID, but actually rooted for them vs. the Red state team in 2020. Some friends were appalled and asked if I was "transitioning".

I hope that you are being treated at UCLA/Cedars or a USC-affiliated hospital or City of Hope. Anything but Kaiser.

My insurance covered CT scans every 3 months, then 6, then annually. I skipped the last two or three years due to COVID and other (spine surgery) health issues. Going to have spine, abdomen (for colon and kidney), and lung done next week in a consolidated visit. Am not concerned as I have no symptoms, which might be a foolish attitude. But it's my gut feeling -- pardon the bad pun.

I think you should get a cat if you are physically able to deal with a catbox (if necessary).

The absolutely most memorable part of my sickest symptomatic days and treatments was how my three older cats' behaviors changed. Two were butch, territorial males who would insist on going outside every day, all day long, to patrol the neighborhood against alien cats and hunt for whatever they could kill/partially kill and bring home to me in exchange for canned, wet, Fancy Feast (dry Meow Mix was an unacceptable currency). The third cat was my special, silly Tuxedo girl, who only wanted to hang out with me to receive constant attention. They mostly didn't like each other, and had specific, very-separated positions in the bed at night. But when I got sick and was in bed all day, the Boys stayed inside in bed with me all day, along with Tux Guurl. Each pussy positioned themselves on either side and at the top of my head, unusually close to each other, purring in concert and staring at me constantly when I was in and out of consciousness with pain. It was the strangest thing ever having them be so vigilant. They knew something was wrong with their personal masseur and gourmet chef. I was single at the time, thank goddess; my ex would have been a horrible caretaker. Disclosure: I happen to be a medical research scientist and am skeptical of these things but those cats saved my ass. Kind and dear friends/neighbors took care of them when I was in the hospital multiple times. I'd made arrangements in my will with the SPCA for their care should things have not have turned out well.

Strongly recommending "cat therapy" and companionship for you on this shitty journey -- which hopefully will have a good outcome. So many cats need homes, even if "temporary".

I thought a lot about things last night (and pretty much spent the night tossing and turning about it) and decided not to go see the cat today. Physically, I don't think I'm ready for a pet. The apartment is a shambles, with stuff laying everywhere that I either temporarily need for chemo or I haven't been well enough to deal with. I have made this mistake before (not with a pet) the first time I was on chemo. You get something called chemo brain and not only do you get foggy and forgetful, but I also think it brings on episodes that mimic what someone who is manic depressive goes through.

When I was on chemo the first time, 6 years ago, I made a lot of bad decisions that I thought were good decisions at the time. I got rid of my car that I had just paid off in order to lease a Range Rover for a really great price (but which led me into another lease and now I'm finally in a more normal car that I've bought). I moved to a larger, more expensive apartment and left behind my rent stabilized place I had been in for 15 years (though my new place is also rent stabilized) and am paying way more in a neighborhood I don't particularly like. My apartment is bigger and nicer, but if I had to do it over again, I would not make the same decision.

And there were other things, mostly centered around self-gratification and money. I used the excuse of- well, I could die of this, so I may as well make the best of my time left- and while that's a good reason for some things, it shouldn't make one throw logic out the window. My therapist at the time talked extensively about this particular side effect of chemo (and then he died of cancer five sessions after I started with him, so he may have known what he was talking about.)

When it was only affecting me, then I could deal with the fallout, but I can't do that to a helpless animal if I decide in a month (or whenever) that I've made a terrible mistake and can't handle this. And it doesn't have anything to do with how much time I may or may not have left. I feel like I've tackled that issue. When I started chemo this time around, I made a promise to myself that any big life decisions would not be done on a whim. And this one was heading that way. I have another two sessions of chemo. I'll be ready to go in a month. If he's still there, then I will re-visit the idea. If he isn't, it means another lucky family got him. (It's a no-kill shelter.) And if I do wind up getting a cat in the future, I will make sure I cat-proof the place first, and can handle taking him to the vet right away for a check up/physical, etc. I feel sad, because I fell in love with that little face, and thought about new names for him yesterday, but I think this is the right decision. Sorry I posted about it before without being sure.

OP, can you just foster a cat, even a kitten, and if it gets too much, no worries.

OP, beware toxoplasmosis with your reduced immune system.

There's nothing for you to be sorry about. You've made a totally unselfish decision, and good for you.

Waiting is okay, OP. Glad your treatments are almost done.

Long time lurker here: I'm wishing you all the best, OP. I'm thinking of you often!

OP, I agree with all of the above responses, and especially the advice about Toxoplamosis - which I should have thought of, given my profession. But do know for future reference that you can pay to have a cat tested, and as long as they remain inside and not in contact with other cats, that shouldn't be an issue.

I posted my experience about living "alone" with three pre-exisiting kitties who were my best friends and was totally projecting along with late night drinking and Datalounging (one of the great joys in my life!) because I get to hear great stories from wonderful people like you, along with the dish and cuntiness. Have been catless for about 6 years and all I can think about is getting another one or four when I retire.

Of course, there are some common themes, but everyone's cancers and experiences are unique.

Please keep us posted. Mets to brain and bones are concerning. That you are writing lucid, articulate posts is encouraging.

Meanwhile, I have an image of OP tooling around green, lush LA in a Range Rover (or "normal" car) to chemo infusions in a Dodger's cap on a sunny day after all the rain we've had out here this year.

Op - don’t apologize for writing about the cat before you were sure. You were trying it on and thinking it out. With all that you have gone through - all of the worries and decisions - how wonderful to be at the point that you are thinking about a cat! As far as the mess - all the more to explore. But you are right - if you are worried that you will have remorse - wait. And if you change your mind again - even tomorrow - go for it. Get some rest this weekend!

My friend really wanted the comfort of a snuggly furry pet when she had cancer, but was advised against getting a cat. She adopted a beautiful lionhead rabbit instead, which lived in the house and was litter trained. Very friendly and sweet. They don't carry any diseases.

Everyone, I have no idea what happened. I wrote a long post last night and it seems to have disappeared or it never got posted in the first place and I didn't notice. I'll try to boil it down.

The shelter called me yesterday morning to confirm the cancellation of my appointment, which surprised me. They asked if I wanted to reschedule, and I explained my situation. The woman I spoke to was really nice, and I told her everything that was going on with me. She said that she was happy that I had made the effort to find a guardian for the cat for when the time came, but that also, if I was thinking of adopting now or at a later date, they would happily take the cat back if I could not longer care for it, and I could even leave them in my will to do so.

They told me a little about the cat, that he had been in the shelter since December, was adopted out once and returned. I asked why. The adopter said he had litter box issues and peed outside the box. The shelter lady also told me that the adopter had multiple cats and that this cat had been very stressed out by that. He's been back at the shelter for 3 weeks with no litter box issues. I asked about medical issues, tests, etc. They'd done a full workup on him when he came back and would provide those records. However, not one person had inquired about him (other than me) in the 3 weeks since he'd been back, and they were the only ones who had when he first landed in the shelter.

She also told me that he had an odd thing- he could not meow. His original owner said he'd had an upper respiratory infection when he was a kitten and it affected his voice. I thought to myself, this little cat is broken, I get that. Maybe he needs me. So I kind of got, not guilted, but Im sure manipulated into at least going to meet him.

Got to the shelter (long drive) and they brought me to his double-wide cage and opened the door. He came right over to me and flopped on his side for rubs. I sent about 15 minutes with him and I decided I could not let him stay in that cage any longer, so I agreed to take him.

I went back to the office to fill out the paperwork. Every time another employee came into the office and saw the cat on the computer, I heard a little cheer of excitement that he was being adopted. I thought- either they love this cat or they're trying to dump the demon spawn from hell on me. But I had been told that he was a favorite among the employees there because he was so cuddly.

They gave me a ton of supplies for him, including an actual carrier instead of a box because he was so big. I told them that I still had my old carrier and it was identical, so I would be happy to return it to them next week so they could use it for someone who really needed it. They didn't even charge me an adoption fee. I didn't realize it until after I'd left.

Got him in the car in his carrier, buckled us both in and all of a sudden, he starts meowing his head off. I'm no fool; I'm certain there was no miracle happening there and that someone got their info wrong, but I hate when cats cry in their carriers. My two used to do it all the time going to the vet, etc. and I always felt so horrible about it, like I was traumatizing them. And they were great at the vet. It was just the carrier. I tried putting my hand inside to rub him and he popped out, headed for the backseat, and curled up in my hoodie and just chilled, not a peep out of him.

Got him to my office and asked a co-worker to keep an eye on him while I ran to the pet store to buy essentials (I ordered more stuff from Amazon, which came today) and she told me he cased the joint, then threw himself at her feet for rubs.

To be continued...

And now I remember what happened- my post would not post (probably because it was too long) and I got distracted by the cat and probably thought I had posted it. Anyway...

Got him back in the car, same thing happened. Let him out, he climbed into the back seat and just sat calmly like he had hired me for the day. Got him home, set everything up, took a quick shower (closed off my bedroom to him because I don't know if I want him sleeping with me. My other cats did not.) He walked around my apartment, sniffed it out, climbed a few places to explore, then hopped up on the couch with me and, I have to tell you, this is the calmest, chillest, most loving and cuddly and sweet cat I have ever met. Super smart, too. I have never encountered an animal that, within an hour, it's like you've had him his entire life, that's how comfortable he was with me.

I decided to sleep on the couch last night so he wouldn't feel abandoned, and he slept in the crook of my arm the whole night. Would not leave my side longer than to use his litter box or go eat. If I got up, he wouldn't follow me out of anxiety, but if I called to him, he would come to wherever I was and flop down at my feet. He finally discovered my chest this afternoon and sprawled across it, pushing my face out of the way so he could stretch more, and biting my neck with little nips that were not teeth, just mouth.

I adore him, and I feel like this was meant to be (even though I do not believe in that kind of thing). But I think we were meant to go through our last stages together and bring each other happiness and some stability.

Whoever owned him from kittenhood had to have done an exemplary job and I imagine he was not surrendered lightly or without many tears. I wish I could tell them that he's fine, and that he is going to be loved.

I am not too worried about toxoplasmosis, though I do so appreciate everyone's concern. I had cats the first time I had cancer/chemo, and I made sure to wear a mask when I cleaned and changed the litter box. But his medical records give him a clean bill of health and I will take him to my vet next week to be doubly sure. And he will be an indoor only cat.

He's 6 years old, 16 lbs of chonk and as soon as I figure out how to use that IGG/photobucket program, I will post a couple pics.

Awww OP, I'm tearing up reading your story, so happy for you and your Chonk- what is his name? Thank you for giving him a loving home. I lost my 18 year old boy a month ago, so am living vicariously through you.

Wow, wow, wow!!! I am SO HAPPY for the both of you! Yay!! …. Now - because the one issue that you mentioned was a pee pee outside of the box. Let me tell you about my little Sunny really quick - he has a weird little pee pee thing. …. In 2009 this incredibly beautiful little boy Tabby started showing up at my house - he would look into my windows and cry, cry to get in. He had a cute little collar “Sunny” and a phone #. I already adopted a stray “Black Kitty” and a little white cat I named Anderson Cooper started to hang out. I was glad Sunny had a home. I called the # and a sexy Manson girl type and her husband came to pick up Sunny - poor thing didn’t want to go . he kept running across streets to get back to my house. I would call Manson Girl and tell her that Sunny was at my house again - I kept taking him back home and he kept coming back. The woman kept making crazy calls - The husband was mad because Sunny kept kicking out screens to get here. The crazy woman was an animal hoarder with multiple dogs and cats and kids . She would lock the cats outside to fend for themselves while they vacationed. and Sunny had a lot of little quirks like covering his food with his paws. WELL - when I moved I took Black Kitty and Anderson and I took Sunny and didn’t tell them. …… It’s 2023 and B Kitty and Anderson have passed away but 15 year old Sunny is laying here with me watching Seinfeld. ….Because of how he grew up - now that Kitty and Anderson are gone he will cry until I follow him - he is afraid to use the litter box if I don’t “stand guard” for him. And if his box isn’t CLEAN - like Felix Unger clean - maybe twice a year he will go outside the box. He is perfect in every other way. …. That was my long winded way of saying - be patient with the Cat Box. Congratulations! You are both so lucky!!

Wow, was not expecting this. Congrats to you both!

Ohh, I love that story, R433, and I love that you still have Sunny with you. Thank you for telling me. I miss both my cats like crazy and I think of them nearly every day (and I'm sure I always will).

R420, I was not expecting it, either. It's been quite the whirlwind, and I still can fully believe what an angel this cat is.

I am keeping him out of my bedroom until I finish chemo, at least, and possibly further. But I don't want him in the bedroom while I have my pump attached to me and I could be sweating and toxic. The two nights I have the pump attached, I sometimes have vicious night sweats, and sometimes I don't, but there's no rhyme or reason to them. He snuck in tonight when I went in to put some of his older blankets that came with him from the shelter in the laundry and it took a while to get him out. I didn't want to be mean or harsh to him or pick him and force him out, I wanted him to follow me, but the lure of the unknown was too much for him. I was able to easily pick him up when he jumped on my desk and carry him out, but he's a big boy, and I don't want him accidentally swiping me with his claws. (Speaking of which, tomorrow will be clipping the nails day because boy, he needs it!)

I'm going to try to post some photos tonight if I can. Still thinking about a name for him. I'm considering naming him after one of my favorite ballplayers, but I want to make sure it fits.

Oh, it was pretty easy. Here he is, world!

Another.

Had to get a little of the chonk in.

And one last one because I think he's handsome.

He is so handsome! he looks like a Butterscotch Sundae! Isn’t it funny how suddenly you have such great companionship! Is it from Casablanca “This is the beginning of a beautiful relationship.”

Catablanco

Awww Ginger Chonk! Although his profile suggests that someone was Asiatic or Oriental. Please post more pics whenever OP.

He's adorable! Apricot and white. Love those big green eyes.

Such a cutie! Congratulations!!

Oh man, I have to pee so badly but I don't want to disturb him!

He's in heaven in his new home.

Excuse my mess and clutter and my old man recliner. Let me tell ya, you do not want to go through cancer without a good recliner at your disposal!

He is so comfortable with you with his exposed belly! His paws over his face is killing me.

OP, just love you for taking the plunge with this beautiful little guy! And your home looks clean and great from the pics.

Wishing you and your kitty a happy week!

Aww, thank you all so much. I am really happy I did this. I'm so proud of him. Not of what I did, but actually proud of him, the cat. (I know, that sounds nuts.) He is the best boy. I cannot believe I got so lucky. I feel so proud to have him as my family.

I did cut his nails today and it was a harrowing experience for both of us. My previous cat did not like his nails cut and would wriggle around like mad, but this boy is the size of a small toddler and is strong. And I saw actual terror in his eyes. I went as gently as I could, and I spoke to him very soothingly, and stopped in between to give him kisses, but I almost didn't finish. I am hoping it gets easier, but at that age, I doubt it will. I am so glad I got them cut, though. After two days, I looked like a Freddy Krueger victim, and it was only because he's walking all over me, he's not at all aggressive and has never "scratched" me.

I do need to lay down boundaries tomorrow, though, because I have work to do at home that I neglected all weekend because he was on top of me, on the side of me, stepping on the keyboard, giving me kisses or stretching out and accidentally smacking me in the face with his paw. So tomorrow we have got to have a little space from each other. I'll try to sit at the dining room table to work.

Right now we're watching the hockey playoffs! Well, I'm watching, he's licking himself.

What a great update - again I am so happy for both of you! He is quite “ample” a nice big boy! …. I work from home. It was actually easier when I had 3 cats. If I had to make the bed or sit at the keyboard - I could look at the 3 and say “I love you - Scram!!” since the other two passed away little Sunny is Clingy. We have started the Cat Bed ON a bed. Or Cat Bed ON a table near the computer.Just a no frills bed that you can move later - but for “Work Time” that is his spot. He knows that is HIS bed and we are level. otherwise as sweet as he is he would want attention. it is worth a try. ….I bet your cat has just had the happiest day in a LONG time! good for you!

Happy for you OP. Does he have a name?

I named him Raleigh, after my favorite Seattle Mariner Cal Raleigh. They are both adorable with chonky butts.

We'll see if it fits. I reserve the right to rename him or call him by the name of every other cat I've ever had (three) in my life as they spin in my head on a pet rolodex. : )

I think you're going to end up calling him Chonky.

Haha, I don't know.

I put together his scratching post today, a real sturdy sisal one that's three feet tall. I had one just like it that my other cat never used, and it was super expensive so after he died, I hung on to it. I finally tossed it a couple months ago, figuring I would never need another one, and boom! This guy was scratching my couches, so I got one quickly. I worried he would ignore it, but he found it and loves it. It also gets him energized. After he scratched the hell out of it, he got the zoomies and we played with Wormy on a fishing pole.

Cal Raleigh and HIS chonky butt.

Hey all- apologies for not checking in. It's been good times and bum times.

The good times have been with my new buddy. He is really just the light of my life and has found my smile for me. I adore him. We are glued together for most of the day. He still gets nuts when I go into my bedroom to sleep for the night, but last night he was much quieter, so I think he's finally understanding I'm not going anywhere for the time being.

The bad is that I showed up for chemo on Wednesday and after they did my blood test, they sent me home because my platelets have dropped so low that it was too dangerous. They asked me to stay home for two weeks, but I insisted on having my blood tested next week so i would only miss one more week instead of two. I actually should have been done with chemo yesterday had I not had the delays I've had. I suppose I should not be surprised. I noticed my gums were bleeding pretty badly this past week after brushing, and that will happen when platelets are low. The odd thing is my platelets also tanked at the exact same time the first time I had to do chemo 7 yrs ago, between doses 10 and 11. I just so badly want this to be over with already, and I really need to get back to full time work, as I am blowing through savings. Last time I was able to work nearly full time, only taking the chemo day off and half a day when I had to get the pump removed, but this time around, between the leg and back pain and the proctitis, the Covid danger, and who knows what's around the corner, it's been impossible to do much.

Here's hoping this coming week I'll have recovered sufficiently to proceed.

Oh wow OP - I am SO sorry about that. The anxiety and uncertainty must be enough to drive a person mad. Good for you to try again next week - the two week wait could make you squirrely. Are you feeling well? I mean it was so painful for you for so long - will this wait be at least physically comfortable? …. So Happy that you and your little Buddy are enjoying each other’s company!

"blowing through savings". WTF? Don't you have disability insurance? I don't think you should be working at all, unless you love what you do and still have abundant energy.

He's probably maxed out the disability. Glad you have your chonky buddy to help you get through this. Purring is good for the soul.

I'm an independent contractor, so I don't think I would qualify for disability insurance. I thought about trying to go on disability, but there are so many things that are connected to that, namely going on MediCal which I don't want to do because it's terrible insurance. One of my support group members is on it and it sounds like hell. They make you wait for everything. I'm getting insurance through Covered California, and my policy is very comparable to what I had pre-pandemic, but for less than half the cost. Prior to Covid, I was paying close to $1000 a month for insurance. It is a bit of a juggling game though. And during the pandemic, I qualified for CalFresh, but two months ago they stopped the pandemic, I don't know- bonus?, and my benefits went down to $23 a month, which aren't even worth it. I could get more, but then it would fuck up my insurance. I'd rather just be out there working and earning, and I want to get back to that as soon as I possibly can. I have nothing against these programs and I am grateful for the help I was able to receive, and am glad they are there for anyone who needs them. I just feel better when I am relying on myself for income and support and can meet my bills (as I'm sure we all are).

I have been trying to find "from home" work to do while I've been sick, but it's really difficult. I've put in applications everywhere and the only time I ever get a response, it turns out it's a sales job with commission based salary. Every time I have to get on the phone with a customer service person, I want to ask- how did you get this job? I feel like they're hiding them somewhere, which is ridiculous.

R451, if you’re on disability, you go on Medicare. You can then get an excellent supplement plan. The friends I know that had cancer went that route. Please look into your options before you dismiss it.

Btw, I’m referring to disability from the government, not from work. If you have cancer, you will qualify.

OP - I completely understand your balancing act - I’m the one who is taking care of my mom who has dementia and a recent stroke. she didn’t plan for the future - I take care of her and she has been renting ten years. We are “scotch taped” through this - the savings are gone. She gets just enough Medicare that she doesn’t qualify for Medical but on Medicare she is broke. Her Cal fresh (which she still thinks is a credit card) has been cut by more than half since Covid. I am working the best that I can but now she wanders so I have to be here. No other family so it is stressful. then it’s hard to navigate options - and it is embarrassing. One of the worst parts is worrying if you qualify for one thing it will disqualify the other. I am sorry that you are going through this added layer of stress. It’s a good thing that happy Kitty is there!

I will look further into things, thank you all and I appreciate the advice!

OP, I admire you for many reasons and am thinking of you; very much appreciate your updates. Chonky kitty pics always appreciated, too....😻

OP, I hope you score a good WFH side hustle. Hang in there.

Numbers are even worse this week. Platelets are 101, WBC are 104 and Neutrophils are 0.85. I start Zarxio injections tomorrow for the latter two, and no idea what they will do about the platelets, but no chemo tomorrow.

Now I'm getting worried.

Does your doctor seem alarmed? Do you have any doctors or medical people past or present who could give you some insight about what is going on and why it is happening? I am so terribly sorry - I don’t want to sound like a smart ass - but I wish that Dr. House could limp in and get to the bottom of it. Are you feeling poorly? Sending you the very best thoughts - and a casserole if I could!

You don'[t sound like a smart ass at all. I appreciate humor, so no need for walking on eggshells. Anyone, really. : ) I like a good laugh or smile.

I emailed my doctor to ask what's going on and if the cancer itself is causing any of this or if it's simply the chemo. I would think it was the chemo, but I also know my body from going through this before (as well as this time) and my numbers always bounce back fast, even when they get super low. After three weeks, my numbers should not still be dropping. We'll see what he says.

I just looked up some of that - that could make someone fall down a rabbit hole! It looks like it is fairly common - not always a bad thing. . I had one good thought - last week they told you not to come in for two weeks but you wanted to come in after one - SO - maybe they thought it would take two weeks to clear up? Try to stay positive - be careful and I really hope your numbers even out quickly and you can get back to the road to recovery.. Watch something Happy and enjoy Kitty. So sorry.

Thank you for doing that, R471. I appreciate it. Yeah, I might be pushing myself too much and trying to rush things along. I just drank a huge glass of unsweetened chocolate almond milk. I'm too tired to cook spinach or kale tonight and am skipping dinner (not really hungry). Tomorrow for sure

I wish I could help. I go for a walk every morning, and tomorrow I am going all the way to Whole Foods. I will pretend we are walking together so you can get the Vitamin D and somewhat fresh air. And kale and spinach. Hang in OP.

OP, from what I can tell from this thread is that you have rather severe metastatic colon cancer - that came back years after initial treatment. My greatest fear. .

You have been treated with appropriately aggressive chemotherapy. Chemotherapy basically seeks to kill all dividing cells in your body -- the cancer cells, but it also kills normal cells -- including those (like Neutrophils) that are part of your immune system. It's a sledgehammer approach - kill everyone and ask questions later. Modern cancer drugs seek to specifically destroy the cancer ("bad") cells, but not the good ones. It's a challenge, but there's progress. It's slow. Cells of your immune system prevent infections, and also can kill cancer cells. The latest drug you're on is to stimulate your immune cells (and hopefully the platelets, too) to come back from this rough chemo. To me -- and I am NOT a doctor -- that your immune cells/platelet counts dropped is a sign that the cancer drug is doing its job and they're giving you a break to allow your immune system to recover before, perhaps, the next round of chemo?

Am just a lowly lab scientist who also had cancer - in remission, thankfully. Personally wouldn't be concerned about low platelet/Neut counts; the mets to brain and bone are more worrisome, and hope that the chemo reduces that. Glad you got a sweet cat. I'd be eating chocolate ice cream instead of kale and almond milk, but that's just me. And Vodka, menthol cigs, and weed as side dishes. Trips to Aruba and Bora Bora instead of a Range Rover. 401K drained. I was a shitty patient (bad pun for anyone who's endured colon resectioning). To each their own. I wish that you had better disability insurance so that you didn't have to worry about finances during this.

Have been on DL since 1998. Your posts have been most impactful, in part because we have a few shared experiences. If I were in LA, I'd come over and hang out with you.

Sending hugs.

R474, thank you for that. And yes, that's my understanding about why my white blood cells, et al, are all nose diving. I am just being super hard on myself because that's what I do. My feeling is- well, your numbers have always bounced back quickly before- why not now? It's too much expectation and projection on my part. I think giving it another week like I'm supposed to and not worrying about it until then (if I need to) is a good idea.

And trust me, I would LOVE some chocolate ice cream. The almond milk and kale/spinach is to try and boost up my platelets naturally. I read about it in an article online. I just wasn't super hungry tonight and I didn't feel like standing and cooking, so the glass of almond milk was all I could do. Plus, I've gained about 20 lbs since this whole thing started. I've gone up and down a few times. Down when I had the proctitis, and up since I've been back on chemo. I've been trying not to eat too badly, but it's also that I barely get any exercise because of my bone issues.

I do know that all the tumors have shrunk since chemo started, according to our mid-way scans after the 6th dose, and that's great. I'm hoping to see more progress when chemo is fully done. But I also know that's just a little extra time given to me. How much, I'm not sure.

I am very glad your cancer is in remission, and I'm assuming from your pun that you also had colon cancer, so you know what I've been through intimately, at least the first time around.

I want to tell you, and everyone who has posted on here, that hearing from you all and being able to hear your stories and good wishes helps more than you know. And my being able to post here really helps. It's not that I don't have anyone to talk to. I have friends, I have my cancer support group, but I do love being part of this community, however anonymous and contentious it can get (though I have to imagine that most people don't take the verbal sparring too seriously; I know I don't). It helps something in me to know that strangers can be caring and decent. That's how I was raised to be, and though I don't always practice it, it's usually my first reaction, so I thank my mom for making sure I wouldn't be 100% jaded and awful. At this point, I'm probably 70% jaded and awful, but hey, that 30% ain't too bad!

Hugs and warm wishes, OP. You've got the right attitude.

I got you kale and a tiny little tub of Hagen Daas.

So many lovely people on this thread and not one asshole. The best of Datalounge.

OP, thinking of you and your chonky boy this Saturday evening. Very much hoping you're eating and sleeping well and feeling pain free. Many thanks for your updates. Your posts mean a great deal to me. 😻

Thanks, R479. I have been trying to get a refund from Amazon and have been sitting in chat going in circles with them so I popped on to see what was doing.

I took the cat to his first vet visit. He was very well behaved and didn't even cry in the carrier in the car. He got his anal glands expressed (thank god, because he's been leaving tiny stains on the rug from dragging his butt). And he also has conjunctivitis, so I have to give him eye drops 3x a day for 7 days.

I was super worried about going today because I started taking the Xolair injections on Thursday to boost my neutrophils and white blood cells. I've taken this medication once before, about 2 months ago. It's 4 self-injections, one per day. I didn't like them the first time around because they made my body throb. I would be walking around the apartment, doing some chore, and then I would sit down and once at rest, my body would throb for a few minutes. It was very unpleasant and painful. I thought it was my BP, but I checked it and it was fine.

I took my 2nd dose of the new round yesterday, went to my office for a few hours, and then when I got home, the same thing started happening, only my pulse felt very rapid. I took my resting pulse, which is usually 65-75, and it was 108. I tried relaxing, but every time I had to get up, my heart rate would go up to 122, just for walking a few steps to the bathroom.

Texted my dr. He asked if I had a fever (I did not) and then I texted him later on that my HR had stabilized somewhat in the mid-high 90s. I fell asleep on the couch for a while and when I woke up, I saw that he had texted for me to go to the ER. But my HR was now in the high 80s and I didn't think I needed the ER. Took a xanax and went to bed. When I got up this morning, things were okay, except for the throbbing. I texted the Dr again and asked if I could forego the other two doses. He said yes.

But I'm feeling so much better now and even the throbbing is gone. And as much as I hated these side effects, I'm going to hate it if I show up on Wednesday and they tell me I can't do chemo again. So I asked the Dr. what he thought about doing one more dose, and we decided I should do one more (but forego the final one) tomorrow.

As for the cat, he had a meltdown because I slept til 9am this morning thanks to the xanax. I opened the door to find he had gotten into the lower linen closet and knocked everything out of it, and when I sat down on the couch, he raced over and took a flying leap into my lap and gave me kisses and head bonks for 10 min. I guess he missed me. : )

So we're gonna take it easy the next few days and I'm gonna be very careful with what I eat, and I even skipped tonight's Kraken game because I couldn't handle the stress. (And I just found out they won, so I can safely watch it on replay.)

Thanks for checking in. Here's a new photo of my cutie pie.

OP, R479 here. Thank you for your latest update! This makes my weekend happier indeed.

Love the photo of your boy! He really is an expert curler-upper! I respect so much that, with all you're going through, you're ensuring he gets the care he needs, too.

The elevated heartbeat and throbbing symptoms sound alarming, so I'm relieved they're improving. Good to know you have a doc who will respond promptly by text. I hope your oncology team is understanding about not only the medical burdens pressing on you, but how those burdens spill into other areas of your life, such as employment, finances, and relationships.

Please, oh please, keep your posts and kitty photos coming!

Thank you for the update OP, glad to hear that you and your doctor are vigilant and responsive. You got so lucky with your Chonk, throwing a little hissy fit because he couldn't be with you in the am. But not destructive.

Sunday morning in the sunbeam (or what there is of one until the gloom burns off).

That precious kitty of yours looks absolutely joyful! He looks like he ALREADY knows that he is going to have a happy day. I hope that you will also have a happy day and you will get better news this week!

He is a doll. But he is being crazy today. I swear he's possessed by Pazuzu this afternoon. He's knocked everything off the table and every flat surface other than a tap-dancing Linda Blair.

Well, now that the chock is allowing you to live with him, OP, you obviously need to be properly trained. Sleeping in and all that kind of nonsense... maybe even remedial education will be required.

Take care and I hope you both have a wonderful rest of the day.

Naughty boy. Mr. Chonk- behave!

Was he an outdoor cat with his previous owner? They go stir crazy if you make them indoor cats.

I don't believe so, no. And he doesn't do this too much. I've had cats before who have gotten the zoomies or get mischievous. No, he's far too attached to me (which I'm guessing means he was the same way with his previous owner) to have the kind of independence that outdoor cats have.

Is he really six? He looks more like three or four.

Thanks for the new pix, OP. Your boy is a charmer.

[quote] Is he really six? He looks more like three or four.

I guess that makes him a typical Datalounger!

The birthdate the shelter was given when he was first surrendered last December was Jan 12, 2017, so he's almost 6 and a half. He definitely likes his snoozing time. Yesterday we played with the laser mouse and that ran him around for a while, but he does love his naps. Like father, like son.

After a day off of the injections, I decided to try them again because I want to make sure I've done everything possible to be able to have chemo tomorrow. Taking a day off definitely helped with the side effects from the shots and I powered through. Fingers crossed that tomorrow brings good news.

I've been giving the cat eye drops for his conjunctivitis three times a day and he's so good. He doesn't like it, but he doesn't fight me. And he gets a treat after every dose. That got me to thinking- where is my owner to come in with a plate of eclairs as a treat after I'm a good boy and take all my medication. Damn cats have all the luck.

Hey OP, I can always swing by and bring you some eclairs- I had offered to chauffeur you to Cedars if you needed it (I live in WeHo).

Awww, you're very sweet. I was just kidding. The last thing I need is more sugar, but I so appreciate it. One day when all is good, maybe some coffee locally. I always like Alfred!

Just say the word! Just not between 5/22-6/4, I'll be out of the country.

That's totally fine. I won't be in any shape to be social during that time. And then you can tell me all about your trip! Looking forward, and do enjoy yourself!

We would like a full report about your meet-up, please

I'm sure there will be a lot of gossip and pasta straining!

Hi - I am the one who takes care of my 87 year old mom with a recent stroke, bad leg and a heavy dose of dementia and our old handsome prissy Tabby Sunny. I had to chuckle when you mentioned who was going to reward the kitty’s owner with an eclair. The last few months have been exhausting - I have caught myself several times thinking ( at the advanced age of 57!) “Uh oh, how are we going to take care of Yada, Yada …. Oh! ME! ok ok ..,,” or “Yada Yada has happened who do we call to handle - oh - never mind - I’ll take care of it …” Ok - back to “The Office.” ….. OP - wishing you fantastic numbers and smooth sailing tomorrow! Good Luck!!!

Hi OP - I think that we all hope that your day went well!!

Hey Everyone-

Good news. All my numbers went up considerably, so I was able to get chemo yesterday. Feeling okay, probably because i've been off for 4 weeks.

Had a very eye opening and upsetting experience at the doctor's office before going in to infusion. I checked in and a few minutes later the front desk person called me over to say that my balance for the day was $281. I asked why, as my co-pays were usually $8. She tells me-

This is the balance left on your max payout for the year. and then she goes on to explain that every chemo infusion is $64,000, EVERY TWO WEEKS, and that my responsibility is $6400 EVERY TWO WEEKS. I had signed up to go into this research program, so the first three infusions were comped by the program (no one ever told me this). And that carried me through the end of 2022, where I had already hit my max payout due to the brain surgery, so I wouldn't have been charged for them, anyway.

And May 17th was the first time they had caught up with my billing since the first of the year. Five and a half months! I had been paying $8 co-pays (but it was for blood draws, not the whole she-bang of chemo- another thing no one told me; they phrased it at the time as "for my appointment"). So thankfully my radiation at the beginning of the year covered most of my co-pay, which is admittedly low. But I was just utterly thrown by that entire amount, and for the fact that none bothered to bill me for 5 1/2 months, nor did they tell me- hey, this is what you're going to be paying out of pocket. Imagine if my max out of pocket was shit? I'd be filing bankruptcy at this point or going on some draconian payment plan that would likely outlive me.

While I am super thankful that I do have such good insurance (and have always taken care to make sure I did, since I am self-employed as an independent contractor and cover my own policy). But I was sitting in the chair getting meds and just looking around at the other people in the chairs, many of whom are immigrants who don't even speak english and I wonder- how are they doing this? Because if they're on MediCal, that ain't gonna do shit for them. I don't know what the answer is because while I would love to see a Medicare for All, I still think it would wind up being corrupted and what we get in cost covering, we'll lose in service and lengthier wait times. (And I don't want to get into political conversations on here.) It just aggravates me. People shouldn't have to choose between their lives and medical debt.

But I'm doing okay today. It's the cat's first time with me and the pump and so far he's not been too curious about it, but he has stepped on my port and needle attachment several times. No fever or chills this round, but reflux last night and today. I wish I could fast for four days straight during chemo.

Thanks for looking after me and asking!

Only two words about the financial situation: good lord.

That is the perfect definition of “I have some good news and some bad news” Congratulations on your numbers - I am so glad that you were well enough to get your chemo!! Yay! And a companion in Big Kitty, too.

OP, you're a compassionate person.

Up early this morning because I slept on the couch again (thanks, reflux). The cat loved it, of course, and he stayed on me or next to me the whole night, purring in my ear.

But good lord, what an absolute terror he was yesterday. Drove me nuts. "look at me! let me sit here. no, let me sit HERE. I’ll bite this. and then i’ll bite THIS. and THIS. what’s THIS do? you didn't really want to finish that can of ginger ale, or that xbox game, or that treatment revision, right?" I finally tired him out but the afternoon definitely made me feel like Karen Black against the Zuni fetish doll.

I was a little upset yesterday because my agency had asked me to come participate in the strike. I've been turning down one invitation after another since December with them (not for work, never for work), just social things and such. Something I did got some recognition and I couldn't really participate in any of the (very) mild celebration around it. But I did not want to tell anyone there what was going on with me because I didn't want to lose any work opportunities, so I just kept coming up with excuses. But this time, I felt like I couldn't, so I finally had to come clean with my rep, who was concerned and very cool about it. But I don't like not being physically there to lend my support. At this point, no one is really pitching anything or working much. Everyone is scared to make a move, and it's just put anything I had going (and hoping for a paycheck on) into a large pause.

And again, I'm not precious about what I do to keep my household (of 1.5 now) going. I just want to be well enough to do it. It's looking like it will probably be a Door Dash situation starting in mid-June if all the scans come back with good news and we just go on maintenance for now. It's probably the best way to stay in enough open air, not be confined with unmasked people for hours a day, and lord knows there's nothing I can do from home. Remember the good old days of phone sex workers?

Have a good weekend, all. I'll probably be sleeping the past few days off Sat & Sun.

Hi OP - Kitty is being a Tasmanian Devil because he is so happy. He is letting his goofball freak flag fly because he doesn’t have to be afraid that no one will pick him. That is really neat ….. Hey you mentioned Door dash. I am the one with my sweet high maintenance mom. One day is different to the next - we were in urgent care all day yesterday because she was in pain and forgot that she had arthritis. It is hard for me to be on a set schedule. Don’t laugh - I discovered the Poshmark App. There is huge resale in men’s clothes - and shoes and women’s stuff house wares. It is EASY. And you can keep your privacy. Much easier than EBay for me. The buyer pays for Postage. Poshmark has a deal with USPS - you can have the Uspps suppplies delivered at no charge to your door. You make a sale - Poshmark emails you the label that already has postage. Print the label - USPS will pick it up and take it to the post office. Fall down the rabbit hole and watch some you tube tutorials on where to source stuff etc. Here in LA with the writer’s strike and soon sag/Aftra it’s going to be a lean summer out here. plus - even if you don’t do it it is sort of fun to look into it. Poshmark keeps a 20% cut but you aren’t paying rent on a store or advertising. Anyway it is a “gig” and might be helpful. ….

Don’t forget the DGA’s contact is up too. OP, I’m in the film industry as well, under the line, but supporting the writers. I’m not surprised at your financial medical situation- I went through something similar with my Dad, including his meds, which had the ungodly markup of something like $145,000 for a bottle of pills. I feel like all the different institutions and agencies decide when or how much they want to charge, dispense, or inform you or other agencies, and they never play well together. I did happen to find foundations that covered a lot of the treatments and prescriptions for his condition (Idiopathic Pulmonary Fibrosis), so maybe that’s something you can look in to.

Awww Chonky Boy feeling frisky. Sounds counterintuitive, but would a kitty companion for him help? I have 2 Bengals and they do tire each other out most times- I also have a cat wheel. They don’t knock things over or have zoomies, which is rare for Bengals.

Thank you for your update OP. sending positive vibes and calming cat vibes for you.

[QUOTE] you didn't really want to finish that can of ginger ale, or that xbox game, or that treatment revision, right

This never happens with my cat. She's only two but I let her outside and she goes wild expending all her energy climbing trees and walls. I live in England though and cats have no predators here except for foxes, and there are none around here. I keep her in at night but when I'm at work she's free and she exhausts herself and just wants cuddles and sleep in the evening.

R508, my friend keeps suggesting to get him a kitty playmate, but I just can't handle it right now. I have had two cats at a time, and they actually are more work. (Not a ridiculous amount, and certainly not if you're healthy, but there is also the expense.) I am not going to say never, but I have to keep in mind that I will likely have to figure out a home for Raleigh in the coming years, and that's not as easy to do with two cats. And I would only want to bring in another older cat instead of a kitten, and that can sometimes cause problems.

I'm not sure how he would feel about another cat. He is incredibly devoted and glued to me already, which makes me think that he had a similar relationship with his original owner and was likely an only cat and thrives best in that environment. I've never heard a cat purr so much and so continuously as this little guy. But we'll see what happens. I'm open.

Question for pet owners who have had multiple pets throughout the years (as this is the first time I've gotten a pet after pets have died)- Do you find yourselves going through a rolodex of pet names in your head when you want to call your pet or talk about him with someone else? It's one of the reasons I think I don't type his name in here that much, because every time I go to think of it, I start spinning through previous pets. Not that many- I had one cat as a child who stayed with my parents when I left home to move to NYC and then the two cats I adopted in 05-06, but to think that I'm even reaching back to the 1980s to call him Frisky (not my choice of name, btw) is very bizarre to me. So I am assuming it's some sort of muscle memory thing.

Can you all tell that I am avoiding jumping back into this re-write? I started working on it yesterday based on notes I was given and realized it was a lot more complicated than I thought. I've done everything from virtual batting practice to shopping for old xbox games to avoid it, but I have to get back into it and finish today. (And I'm not strike breaking or scabbing- but to explain in full would reveal more about myself/my work than I care to on here and you never know who's reading.)

The good news this morning is my coffee has only made me mildly nauseated, so I'm Mr. Brightside!

Anyone have any fun weekend plans?

Yes, OP, I did think about your situation and +1 cat, but was just throwing it out there. As far as the name roster, it’s not just pets, but kids too- I’ve heard so many parents (including mine) go down the name roster of kids, then pets, until they say, “Whomever your are”.. I’ve lost lovely 18 year old Void boy over a month ago to old age/kidney issues, and I’ve accidentally called my other guys by his name.

I’m spending this weekend with my Dragon Mother, sister and her family near San Diego, then Monday leave for Spain (first time!). I’m travelling with my high school buddy, whose brother works for AA and gets incredible deals, but alas not this time as we’re not leaving from the same airports (he lives in Chicago). Landing in Madrid, then driving to Cordoba, Grenada, Valencia, then flying to Mallorca/Menorca.

Unfortunately I got called to do 2 really big commercials, while I’m away to Spain, and it’s killing me, since it’s an easy $3000, and no work in sight due to the strike.

I just accept now that I'm going to call my current cat by the names of previous ones sometimes. It's not even a memory issue, more that the names are like endearments.

I think that it is natural for us to call our pets by names of pets from years gone by - it is like their little souls know us already and we look into their eyes and we know them already. Thad and it’s the pet version of “Honey, Baby, Sweetie ….” ….. Watching the HBO Doc on Donna Summer - those songs - memories!!!!

Oh good, I'm glad I'm not going nuts then! Woke up from a 5 and a half hour sleep (and yes, I completed my work beforehand!) and the cat was furious, but quickly calmed down once he realized food was imminent. This is our first chemo aftermath together so he doesn't understand that I will be sleeping like mad the next couple days and needing to do so in a bed.

MrE, enjoy your trip!!

How will the cat cope if you have to leave home for a full day for work or hospital? He sounds exceptionally needy. Fury is not really an acceptable response to a five hour absence!

With my feline girls, I just use the same nicknames, so everything is good. My inside joke is to call them "big dog", because, of course, they're not. Makes it easier though, since my brain is mush on aromatase inhibitors after breast cancer diagnosis and surgery. There's another group of demon drugs that have to be taken daily for 5- 10 years.

I'm on the eastern Atlantic coast, but we're also having cooler weather.

I'm not too worried about it, R515. He's been better during my naps the past couple days, and if he has been calling for me at night, I don't hear it anymore with the earplugs.

Also, last Wednesday, I was at chemo all day and when I got home, he was fine, just very happy to see me. I always make sure that when I've been away from him for a while, whether by sleep or being out of the apartment, when I come back to him we have at least 15 min of cuddle time. He's also been spending more and more time on his little perch by the window, which makes me happy. Anything that makes him happy makes me happy!

Hi OP! It is Wednesday - time is flying by so quickly ….. Did you have chemo today?

No, it's every other Wednesday. Today I was home all day. I have a dr appt tomorrow, a follow up from the radiation proctitis days. I'm fine with that particular issue and I really should have canceled the appt but I forgot I had it and it's too late to do so now.

Having an odd problem that is really rearing its ugly head lately (no pun intended as you'll soon see). I have been getting terrible bumps and pimples on my scalp and I don't know if they are tied to the chemo or not. It's been going on and off for a couple months now, maybe since late Feb/early March. They've been more like zits, but I wash my hair and I'm generally a very clean person. Since my hair got longer (during the pandemic) I don't wash it every day because it kind of keeps its style more easily with length than it did when it was short. And I've been doing that routine for close to three years now. But it's getting so that my scalp is so painful and breaking out so badly that I can't even run a brush through my hair. I'm washing it more often to see if that will help (every other day) but it hasn't, and it only makes things worse with my hair because it's getting more tangled and when I brush it out, the whole thing starts over again.

I will probably make a dermatologist appt some time in June once chemo ends, but for now I just look like Encino Man, my hair is such a fucking wreck. I have to wear hats during every zoom meeting and dr. appt.

The cat is sleeping at the other end of the couch right now and I'm contemplating if I should go bite him. He was attacking my feet earlier tonight and kept biting them. I figure it serves him right.

Hi Op - happy pre Cloudy California Memorial Weekend! Ugh your scalp sounds painful! I have to say that the fact that you remain pleasant and lucid after all of the pain and anxiety that you have gone through already this year proves that you are a Champ! ….. Your scalp must be reacting to one of the chemicals you have been on. Wouldn’t it be a kick in the pants if it was a reaction to all of the Kale? …….. Enjoy your time with Raleigh this weekend - it is cloudy and perfect for Zoomies.

Oh my gosh, has he been zoomin! I try to encourage it because I want him to get some exercise, so we play with the red dot or one of his fishing poles. He's a little frightened right now because they are doing fire alarm tests in my building and the noise freaks him out.

Outside of the scalp thing, I'm doing okay. I have chemo on Wednesday and I have been trying to figure out what to bring the nurses and techs and everyone for my last infusion (for now, at least) to say thank you for taking such good care of me. I was thinking about picking up a few different cakes so there's plenty for everyone. Or should I get a cookie tray? I'd like to do cupcakes, but I'm not sure I can handle carrying in three dozen of those. Four cakes seems more doable. I'll look online this weekend and figure it out. I'm sure it would be just my luck to bring in those snacks and then be told my blood flatlined again and I have to come back in two weeks. I might take my cakes with me and eat them all, myself! ; )

I took Raleigh's poop to the vet because he's still scooting his butt on the rug. He tested negative for worms. A friend sent me an article about the problem and it sounds like he might have proctitis. I thought- wait, why does that sound familiar? Oh yeah, I had radiation proctitis at the beginning of the year when they zapped my lower back repeatedly. I don't remember scooting my ass across the rug (though there were a couple close calls!)

Can you all believe out of all the cats I could have chosen, I got one who had my same affliction? It was meant to be.

I'm headed to my office in a few hours to do a few things, but right now I'm racing on Xbox. Being housebound has regressed me, I think, but it has its fun pockets. Have a great weekend, everyone!

Could you have "chemo scalp"?

For your kitty, they can have anal gland issues just like dogs. They can get proctitis and lower colon inflammation, often related to dietary sensitivities. Switching to one of the numerous hypoallergenic diets may make a big difference after his checkup. When you're looking at these diets, read the labels carefully They should only have one source of protein and one source of carbohydrates. Like Green Pea and Duck, etc.

R522 you have completely blown my mind. I cannot believe I have had two full rounds of chemotherapy and have never heard of this before:

Papulopustular Eruption

A papulopustular eruption typically occurs on a person’s face, chest, or upper back, though it can also appear on the abdomen, arms, legs, and buttocks. It is a common side effect among those whose cancer treatment includes an epidermal growth factor receptor (EGFR) inhibitor medication.

The chemo rash typically looks like a group of small pimples and pus-filled blisters. People with this form of chemo rash may also experience pain and itchiness from the condition.

Now I looked up EGFR inhibitor medications and I found two things that apply to me- medicines for (among others) colon cancer, and monoclonal antibodies, which I am being given alongside the chemo. And the papulopustular eruption sounds almost exactly like what I have. I honestly do not remember having this issue in 2016 when I did chemo the first time, so it could be the addition of the monoclonal antibodies or it may just be hitting me differently.

Thank you so very much. I really appreciate it!

Regarding the cat's diet, I am waiting until after the holiday weekend to email back my vet because I would like her to put him on an Rx diet that will help with this. I also found out that my pet insurance policy will cover any prescription food as long as I buy it from the vet's office. And they cover 90%.

Have a wonderful holiday weekend!

Hi OP - that is very thoughtful of you to take something as a thank you on your last day of chemo. Or what knock wood is your last day of chemo. Your nerves must be jangled playing the waiting game for what comes next. I am sure as much as you can’t wait for it to be over - it has been such a singular focus for so long it will be odd to be done. …. but that is me - I love planning things but transitioning from one plan to another has never been my strong suit. I’m working on it, though…. ….. Sunny had a bloody mark under his chin this morning - after much anxiety and googling I think it is a spot of Feline Acne -today he is being extra delicate and cranky and pampered……. Happy Weekend, Everybody!

Hello from Mallorca, OP. How are you and Raleigh doing? I miss my guys at home, but there are plenty of street kitties in Spain, all the ones I’ve seen have been spayed/neutered, which is very unusual to see.

Awww, sneak one home in your suitcase! Or several! Doing okay, thank you. I hope your trip is going wonderfully. Chemo tomorrow. Final one. Will check in on here once it's over!

OP, fingers and toes crossed that all goes smoothly with your last chemo and any side effects. You have a great support "team" at home and all we can offer virtually.

Thank you. I just got home and washed up. My friend is coming over to wash my hair within the hour. It went very speedily today. My blood numbers were good and everyone was on point. But I was very antsy to get out of there. The cakes were a big hit, which made me happy, and I got to right the bell and make a little speech at the end of my appointment. All I anted to do was thank everyone because they really are a great bunch of people.

I had a very frank talk with one of my nurses today about the kind of time I had left and she told me a few things I was not aware of and definitely need to follow up on when I see my oncologist in 2 weeks. All of it good. Yesterday was a rough day for me and I was terrified to go to chemo today. Not because of the meds but because... this is it. What do I do after this? It's not like last time when I wondered if it would come back but all signs pointed to probably not. I was diligent about my follow up appointments, I lost the weight I gained while on chemo, and my attitude was that of- Okay, I've been given a second chance... what can I do that I've always wanted to do. And I did the very important ones (and am still in the middle of some of them).

But this time around, it's cancer in my bones. There's no recovering from that. There's extra time if things go well, but it's usually five years max. So how do I handle that waiting? With chemo, I had something to do, I was taking action, I was fighting. I'm worried about knowing what the correct next step is (and how to handle if there is none).

And this time around, I have fewer people in my life. My mom died, some friends have dropped out, and a few more dropped out on this particular cancer journey. It sucks, but I can't really do anything about it, nor would I want to. You can't shame someone into caring about what's going on with you. I think it's one of the reasons I post on here. I'm not intruding into anyone's life. I'm not bringing anyone down or making them feel responsible. If you want to keep up the conversation, that's lovely and I appreciate it and I will try to hold up my end of it. If you don't, that's okay, too. I don't know any of you, so feelings can't be hurt. Even people who post nasty things here (and they are very few and far between) don't bother me.

I just need to reconcile all of this. It's kind of a jumble of feelings and reactions and I am someone who craves order and logic and above all, a plan. I'm a Producer (among other things). It's in my blood to be hyper-organized!

I will figure it out, more information will come to light, and I will take it from there. But I am impatient!

And man, I wanted a piece of that cheesecake I brought in today!

Love to you OP. Did you save some cake for us?

I can always get more cake for everyone! : )

they were very surprised and pleased with the cakes and that made me happy. At the end of chemo, I got to ring the bell and the head nurse made a lovely little speech about all I'd been through and how much they appreciated me as a patient, which was incredibly kind, so I made one back to them, about how much I appreciated them as caregivers. I would still love a piece of that cheesecake!

Dear OP, just found this thread and have read most of it. Your cat if beautiful, I have a big guy that looks very similar only he's thinner due to his thyroid issues. He's on meds and doing really well.

It's good to see you in better spirits after all you've been through since your diagnosis. I wish you all the best and many pain-free and content years to come.

OP, I think of you each day and eagerly await your posts with news of how you're doing and, of course, the delightful pics of your chonky boy. Thank you for keeping us updated.

Hi OP, I'm sorry I haven't checked in, but it was fabulous to catch up on the thread with the most wonderful news about your chonkalicious Raleigh. He is clearly magic and soul balm. I read such a different tone in your voice, if that makes sense, since he came into your life.

Fuck any "friends" who decided to take a pass on being there for you as you've gone through this health nightmare. Their loss. Anyway, you indeed have us, and I have a feeling that MrE is a real deal mensch. I do hope you guys have that coffee soon after he gets back. Knowing that you have someone close by that you can count on and forge a new friendship with is something I think the entire gang here would cheer.

Sending you and the chonkster besos and scritches.

I just got back from getting untethered from the poison pump, hopefully for the final time. We shall see. Above the nausea and reflux, I feel happiness (and a little trepidation). Looking forward to seeing where things stand in the next couple weeks. I go in for scans in about a week, and then I have a follow up with the oncology team the week after that, so there may not be much to report before then, but if the cat does anything that annoys me, I'll be sure the post photos. ; )

Goodness, OP, such a roller coaster of news with you. I’m sending positive vibes, and it’s my penultimate day in Spain. When I get back, I would love to get together for a little coffee or something when you feel up to it- hell it looks like we’ll be on strike for the whole summer. We can exchange cat pics and stuff. If you ever need help with Raleigh, just say the word.

Congratulations to you OP! Don’t abandon us us now - we all like to pop in to keep tabs and say hello! Time keeps moving so quickly - I can’t believe it is summer already …. You bought an air fryer a few months ago - have you tried it out yet?

[QUOTE] And man, I wanted a piece of that cheesecake I brought in today!

You're way too hard on yourself. YOU were the one enduring the chemo and YOU deserve the cheesecake. Life is, literally, too short for this kind of self denial.

MrE, I hope you had a good trip back. Let's see if we can figure something out for the week after this. Maybe we can meet up at Alfred in the garden on Melrose. It's a nice outdoor place.

R537, I have used the air fryer a couple times, but I started a diet on Thursday to lose the little bit of weight I gained while on chemo. I'm already down 4 1/2 pounds so I have a feeling it will come off quickly once I get myself acclimated back to exercising and paying full attention to what I'm eating, so that includes using the air fryer more. I'd like to lose about 20 more lbs. I would estimate that since last September when this all started, I gained about 25 lbs.

Today is actually my birthday, and I say this not to invite birthday wishes, but because I've never been a big birthday person as an adult, especially since I moved to Los Angeles and my community kind of spread out. And the older I get, the less I want to be reminded of birthdays, but today, when i woke up to a handful of birthday texts and emails, I was actually happy about it. I made it to another birthday. And after everything I've been through the past year, that's not nothing. So I think I am going to actually enjoy the day for once. : )

Trying to get a little sun!

I'm game for either place and time, OP. Belly rubs for Raleigh, and hope today is a good birthday for you.

He's beautiful! (at R540). <3

I'm curious--how are you two going to meet? Do you already know each other, or will it be a carnation-in-the-lapel affair?

I would assume we just mark a date and time on here and show up. it's not a big place, and there probably won't be too many wild haired, post-chemo looking men hanging about. : ) He should be able to find me no problem!

:) I hope you have a good time!

Have a nice day OP. Warm wishes

Happy Birthday to you Friend - thank you for giving us the gift that you gave all of us this year. Thank you for allowing yourself to be vulnerable and sharing all that you did. It really made me stop and be grateful for a lot of things that I have been taking for granted. I hope that your scalp starts feeling better. How are Raleigh’s scooting problems? ….. Well Sunny has started drinking my iced tea and my mother keeps taking my phone - she is absolutely sure it is a remote control …… Happy Birthday!

Happy Birfday, OP!!! Hope you are having a lovely day.

Happy birthday and many more! Plus congratulations on finishing your chemo schedule. Raleigh looks like a party hearty kind of guy, so enjoy yourselves!

Thank you all for the lovely messages. Much appreciated. Yesterday was a pretty good day. I got a lot done, and then Raleigh climbed onto my chest and we watched tv. Well, I watched TV, he slept with his head tucked under my chin. I so wanted to get a picture of it but I couldn't reach the phone without disturbing him.

I'm really thinking I have retained mucho fluid because I lost another 1 1/2 lbs in one day. I don't feel or look like I am retaining fluid, but who knows? Not complaining, that's for sure.

I did realize that I have no normal pants that fit me because of the weight gain during chemo. All I've been doing is wearing sweat pants or joggers and all my button pants are probably a size too small. My friend's family is making me a birthday dinner next week and I'm either going to have to buy an emergency pair of pants or go slovenly. Though if I keep losing weight at this rate (which I doubt), I'll be back in them in a matter of a month.

[quote] Happy Birthday to you Friend - thank you for giving us the gift that you gave all of us this year. Thank you for allowing yourself to be vulnerable and sharing all that you did. It really made me stop and be grateful for a lot of things that I have been taking for granted. I hope that your scalp starts feeling better. How are Raleigh’s scooting problems? ….. Well Sunny has started drinking my iced tea and my mother keeps taking my phone - she is absolutely sure it is a remote control …… Happy Birthday!

Aww, that's very kind. Thank you so much. He is still scooting. I have to run by the vet today and pick up some anti-diarrheal meds. I don't know that he's having... well, I don't know WHAT he's having. I clean his litter box every day and I swear I can't tell the urine from the feces. He poops flat. Everything looks like breaded flounder! My other cats had rounded feces. So that leads me to believe he is having liquid bowel movements. And that could be the root of the scooting issue. They had the Rx for me last week, but I couldn't pick it up because of chemo, so today is my errand day. We'll see what that does.

I would love to see a photo of Sunny!

It isn’t funny , but all three of Sunny’s housemates passed away in the last three years - so when you describe what types of things you might find in the litter box - since I am a worrier I am always checking out Sunny’s poopies to make sure he is ok. He finds it very undignified! …. ok - let me see if I can figure out the photo thing. He is an awfully handsome little guy .

Ok -

My incompetence with trying to post Sunny’s photo leads me to a late afternoon nap ….

Don't worry about it. : )

Sorry to talk about scatty catty, but does his feces stink to high heaven? If so, he may have tritrich (nickname, very common parasite for street cats and boarded cats to have). If not. some canned pumpkin, powdered psyllium, or Fortiflora will help.

No, his poop isn't too bad smelling, and his feces was checked for parasites a couple weeks ago. I'm gonna try those pills because I'm getting tired of spraying his pucker prints with Resolve and scrubbing them off the rug.

I hope you and Sunny are together for years to come. He's beautiful and deserves to be doted on. In return you get kitty love.

Ok, not about me this time, but about Raleigh.

I got to the vet to pick up the anti-diarrheal pills yesterday, but before I could start them this morning, I woke up to two things:

One- another new ass pucker print on the rug

Two- several poops from yesterday, all normal shaped

I'm not sure if I should give him the meds now, since he seems to be pooping normally (all from yesterday or super early this morning since I clean the litter box every day) but now I really have no idea why he's still scooting.

Covid

I forget OP, did they check his anal glands? They may be impacted.

They did. They expressed them, and they also did a fecal test for parasites. Sorry, I should have re-mentioned both in my last post.

R557 Thank you for the sweet words about Sunny. He is so dear and had such a bad start with the crazy couple who had him his first year. He is so beautiful (inside and out). He is 14 /15 - and he still has an “invisible collar” where his hair has never grown back where that awful woman had an unbreakable collar on him that was too small when he was less than a year old. …… My mother keeps telling me that she has to go soon - her mother is holding dinner for her. Luckily we don’t go through this often but it breaks my heart ( and hers) when we do. I think I am going to head out for a walk . …….. Hey - as far as Raleigh’s movements and scoots - even though he is SO HAPPY now - it is all so new. His diet is different his box is different his excercise is different. A little TMI but if I go out of town for a weekend it takes forever to - ahem- get back on schedule.

Maybe the scoots problem is why he was given to a shelter. 💔

I've wondered that, R563. I try to only think about it to piece together his issues, not to pass judgment (which, I'll admit, is my usual reflex). I do think that whoever his first owner was, he got lots of love and was treated well, because he was (and is) very open and trusting and loving and was from the very minute I got him. You don't often see that in older cats who have been surrendered. Not that they're feral, but there wasn't even a hint of trepidation in this cat, anywhere I took him. He walked into my old boss' house like he owned the joint, flopped at his feet and his wife's feet, and was very chill. And when I got him home to my place later that day, same thing. And he cuddled right up to me and slept on top of me the first night in the recliner.

Knowing that, I would like to think that the reason he was surrendered was something much more serious (and not his fault). But whatever the reason, I don't get angry or upset at people who do surrender their animals to a no-kill shelter (which this was). If you don't have it in you to take care of your pet, or to show it love or give it what it needs, for whatever reason, then they should have a shot at being in a home that can. I don't think there's any shame in realizing you're not up to the task and doing what's best for everyone. I would rather see an animal go to a home that wants it, even if they have to be in a shelter for a while, than to live for years where they can sense boredom or resentment. So if this guy was surrendered because of the scooting issue, then he's now in a place where it will be tolerated, dealt with, and cured if possible.

And I just stocked up on more Resolve carpet cleaner, so look out.

It's odd that he leaves skidmarks and having solid poos. One of my guys, Mahler, scootles in only one spot on the rug, no skids, solid poos. I don't think he has impacted glands, but an itchy booty. He does get yeasty ears, so maybe he has a yeasty booty.

Here he is when "Trump My Cat" was a thing before he even was thinking of running for President:

Just be extra careful cleaning up after him as your immune system will be shot to pieces by the chemo. Extra contact with faecal matter isn't what you need right now.

Just checking in, OP. Hope you're hanging in there and Raleigh is keeping you entertained.

Yes - Hi Op and friends - I hope that everyone had a good week and has something fun planned for the weekend….. My landlord of 9 years scheduled air conditioner maintenance scheduled for Monday morning. He texted that Dave will be here at 10am for maintenance - BUT what landlord & his wife do is they will tell me that someone is coming to the house - then THEY pull up , too. Not EVERY time but 7 or 8 out of 10 times, My mom was extra koo koo in Nov and they sent the termite inspector and they showed up unannounced and things weren’t as “polished” as usual. They acted a little funny. I know they want the daughter to move in at some point. …. In other words - I am going to be cleaning and vacuuming and if energy permits steam the wood floors …and cross my fingers that this is just an A/C visit. The thought of packing my mom and Sunny and moving now - um wouldn’t be good. …. Happy Weekend!!!!

Oh no, I hope that you don't have to wind up moving. Moving in a relative kind of trumps rent control laws, but hopefully that won't happen.

Hey all- been a bit of a busy week. Sorry I haven't been as responsive.

MrE, are you around the first week of July, after the holiday? Most of my appointments should be done after the 3rd, so maybe the 6th or 7th?

Let me know. : )

(Okay, I just picked up Raleigh and did a Pepe Le Pew romance smooch with him in my arms. He was not pleased.)

Hey OP, good to hear from you- I literally was going to ask you how you were doing.

I'll be visiting my family down in Rancho Santa Fe 7/1-7/5, so after that is perfect, although Dragon Mother will be coming down and staying with me to visit her ailing sister- I'll definitely need to escape!

Awww smootchy bootches for Raleigh!

Luckily I was over thinking the air conditioner man visit. The landlords didn’t come - just the AC man and all is well. We live to see another day! Plus, in the worry frenzy I got my house cleaner than it’s been in a while. Have a happy week OP, Raleigh, Mr E and nice friends out there in Datalounge land …. Oh and even though I say Sunny’s mom - please don’t roll your eyes and count me out as an Frau. Until I took over Alzheimer’s duty I was pretty fun and nifty and back in the day had an Ann Margret-y vibe . …… Anyway - Have a good week and hope the Titanic thing works out ….

Best wishes for a continued good week, OP. I'm hoping for a Titanic rescue, too.

Fuck, I bought a pair of jeans for a very short road trip I'm taking next month (2 days), because I know I put on weight during chemo, so I bought a size bigger. They arrived today and I tried them on. NOPE! I have to return them and buy another size bigger because if I sit in those pants for any length of time, I am certain to cut the blood supply off to the lower half of my body.

I also cut off all my hair a couple days ago because it was just fried and I got tired of doing weird combovers to cover the thin spots where it all fell out. So I burned it down and am starting from scratch.

I feel like Private Pyle from Full Metal Jacket.

Ahhh so sorry to hear that OP, maybe get jeans with stretch? Also, time to pull out some hats I always wear them because of my scalp eczema- I wear black for work, and don't want my scalp all over me or other people.

Argh, punctuation- sorry! (r574)

I bought six pairs of levi's from Amazon through their "try it on" program. Returning four of them. All but one fit, but I only need two for now. I'm planning on starving myself back into my regular size (32).

[QUOTE] I'm planning on starving myself back into my regular size (32).

A terrible idea for a man with Stage 4 cancer. You let your body get weak and your cancer will thrive.

I was being facetious, R577, but I thank you for your concern. I promise I won't actually starve myself. : )

There's very little difference between a 32" and 34" waist unless you're 5ft 4.

Isn’t it fantastic to be able to worry about your weight and your hair in a normal way instead of it being a measure of illness? I have suddenly discovered 10 extra pounds that I swear I didn’t have two weeks ago! I had been getting a meal delivery for a while - it was Heaven - but too expensive. To make sure that my mom doesn’t set the kitchen on fire I have been doing all of the shopping and cooking. I have found I started doing the dreaded nervous mindless eating standing up. I have to knock that off. …. We’ll drop the weight OP!

Had my PET today and I saw my radiation oncologist later this afternoon to read the three tests for me. He gave me a whole lot of nothing. He said everything looked good, and promising, but my gut feeling was that he was pushing any real diagnosis (or prognosis) towards my regular oncologist.

I am still having a lot of pain in my left lower back, radiating down my left thigh. The problem is that I don't know if this is from cancer or an orthopedic issue I was starting to be treated for when the cancer popped up. My L4 and L5 discs are pretty much worn away and my ortho had been discussing this with me when the cancer diagnosis hit, and since we weren't sure what the pain was stemming from (and because an epidural did nothing), we kind of let it go for the time being.

So my radiation oncologist ordered an MRI for my spine and pelvis area, which I wanted in the first place, but everyone told me, don't worry, the PET scan will suffice. I am hoping we can squeeze it in before my ortho appt, which I have had to already move once because my PET had been denied.

My RO did say one thing to me that drove me up the wall- he said that his brother (my reg oncologist) said I had some sort of mutation that had responded well to the chemo. First I'm hearing about it. So now I have to wonder and worry what the fuck this is because he's on vacation until July 13. (I see him the day after.)

I know I don't have Lynch syndrome because I was tested for that the first time around. I questioned the RO about it, but he said he didn't know anything more about it. He told me that unless the MRI came back looking like the pain was being caused by tumors (again I ask- why can't that be seen by the PET?) I won't really be needing him any longer. But that if it was tumor related, we would do more radiation, which I can't take. I cannot go through another episode of radiation proctitis. I was lucky enough to escape it being permanent once. I am not willing to take that chance again. It's so awful that you don't want to live.

Sometimes I think it was better in the old days. No one knew anything, the doctors kept everything from you, and you just died peacefully in six weeks. All this wondering and worrying cannot be healthy.

Oh gosh - anxiety, anxiety. I hope and pray for you that that your pain isn’t coming from tumors. I hope that you won’t need more radiation. I’m so sorry that this brought up more questions than answers. Plus the wait. Damn. ….. Well - it will be ok. Give Raleigh a nice boop and see if you can shake off the worry a little bit.

Ahhh I'm sorry OP. Don't know what to say, but I'm glad you have Raleigh.

Sorry it's me at r583

Sounds like the pain is coming from bone mets in your spine. Ask your doctor for fentanyl patches.

No, I won't be doing that.

That mutation you have is likely a big deal in terms of what is called "personalized medicine". This is music to my ears. My guess is that your "chemo" is a monoclonal antibody therapy. Some drugs are far more effective for some patients with certain mutations for certain types of cancer. All drugs are toxic to some extent. The cancer drug game is all about finding drugs that kill the cancer cells but don't kill the healthy cells that have important jobs to do. It's also all about targeting certain patient sub-populations with specific genetic traits that would render them most responsive to any given drug. By any chance is it a BRAF-1 mutation? Do you know if you've been treated with a PD1/PDL1 inhibitor? (Are you willing to share that info?)

BTW, not that my case is any way similar to yours, but just want to put this out there: I had CRC (posted this before) with three major abdominal surgeries over a year and a half. Two were resections and the last was colon reattachment (that worked, thank goddess). Bottom line is that I had no ab muscles for two years, which I believe led to severe lumbar disk degeneration and severe mobility issues which led to fusion surgery last year, and am 80% better now. They found no evidence of cancer mets. I hope that will be the case with you. If not, the fact that you're responding to whatever treatment(s) you've been getting is remarkable.

I wouldn't discount more radiation just yet. OK, totally lying, but you have Raliegh(SP?) to take care of now. So just do it if necessary. Proctitis is not not necessarily permanent. The good news is that once the cancer is gone, the body's inflammatory response to it goes away. People who have IBD/Crohn's aren't so "lucky" because the cause(s) are unknown. Yeah, it's freaky where we try to find solace. Told my colorectal oncology surgeon "look, I'm a late-in-life power bottom... please fix my ass, or just donate my organs to charity and call it a day". She basically said that my Liver by Smirnoff, and Heart and Lungs designed by Philip Morris would be useless to anyone.

You've been handling all of this so well, so far. Whatever you and your medical team has been doing has been working. Hope you keep it up.

Thank you, R587. Your post was very intriguing (and also made me laugh). To try and answer some of your questions...

[quote] By any chance is it a BRAF-1 mutation? Do you know if you've been treated with a PD1/PDL1 inhibitor? (Are you willing to share that info?)

I don't yet have any info on the mutation. My RO mentioned it as if he assumed I already knew and as though it was just a passing conversation with his brother. He didn't have any information on it. So I need to wait for my reg oncologist to get back from vacation before I find out. I do know that my reg oncologist had ordered a series of genetic tests over the past couple of months where they took extra blood. But I haven't seen him for a good three months. I used to see him every 2 weeks during chemo, but then he just kind of disappeared. When I had to stop chemo because of the platelet issue for a few weeks, I only saw his PA. I was not too thrilled with that, and even before my RO spilled the mutation beans on Monday, I was planning on asking what all the genetic tests were for.

[quote] My guess is that your "chemo" is a monoclonal antibody therapy.

I do know that this time around, a monoclonal antibody was added to my chemo regimen. I did all the same drugs as my first time with cancer, but they added three- Avastin, a drug to help strengthen my bones (which I forget the name), and the trial drug I was enrolled in the test of, which was for certain side effects.

I am for sure not giving up on treatment at all. What I would like to do is gather all my new scans and reports and start getting a couple of second opinions about what the next step is. Is it immunotherapy? Is it more of the same? Is it maintenance and monitoring? One thing I do know is I'm not just taking the word of one doctor for this. I was fine to work with these two for the "standard of care" procedure that I just went through, but last time I took a maintenance/monitoring stance, look what happened. I want to make sure whatever the path is, that I have thoroughly researched it and gotten as much information as possible.

I woke up early this morning (6:30) and was sitting in the quiet, just having coffee, and I kept hearing this rhythmic on and off motor sound, very light, coming from what seemed like across the other side of the room. I got up to investigate, couldn't hear it anymore, turned around and realized it was my cat, purring in his sleep, on the other couch next to me. There is no better sound to my ears than the purr of a contented kitty. He really cheers me up.

I just got the scans and reports for my last three tests. Obv I can't understand the scans themselves, but the reports all seemed positive. The bone mets are all greatly reduced. The remainder of the tumor in my skull is a little mystifying. The report says it got smaller since the last scan, but then the measurements given are actually larger than the scan before. I will discuss with my surgeon when I see him next week for a follow up, as I am sending him these scans and reports, and he has my brain scan from March already.

OP, it's getting close to 600 posts here. Do you want to start your own part 2? I would suggest it so it goes the way you want it to, and not an accidental botch job by a well-meaning poster (or an intentional one as this IS the DL). This is a great thread and I look forward to reading more about you and Raleigh, King of the Purrs.

I definitely will if people would like to continue. I don't want to be, I don't know- egotistical? about it. If you all would like to continue )and I would like that, thank you), then I will start a part two. Thanks. : )

Absolutely OP. I vote for a part 2.

Please do start Part 2 OP, no question. I look for you every day and am delighted to hear about your new kitty. You two needed each other.

The Raleigh seconds it!

Here is the link to the next thread. Thanks, all.

Yay! besos and scritches OP and Raleigh!