No Smoking... ? ⚰️

June 24 - 27...

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I don't need anything - I'm fine. Anything I need is 1 click away on Amazon Prime...

Seems like the new cocktail of drugs they gave me worked pretty well for paliative care (comfort). I feel much better.

I got a lot of new scripts yesterday
Yes - they share all the data at all times. Ironically, MSK gave such bad advice it almost killed me, so I'm a little leary of their opinion now. Want to check out Columbia Pres or NYU Langone.

Feeling ok today - got much better sleep and new meds are handling pain / discomfort more effectively.

I just walked 2 miles. Feel so much better this week with the new drugs

People are contacting me for cancer advice now, like I'm some kind of expert because my case is so rare + unique. Life is strange. Guy from LIC warehouse has mother stage 4 no response to chemo.

Your focussed on the wrong problem. The problem is cancer - not my throat being soar

Didn't get a lot of sleep last night. Kept thinking about biz and all the legal stuff - a lot of life stress I've been intentionally avoiding. Oddly enough, I feel pretty good today. Just need to sleep more this morning or nap this afternoon. Without proper sleep I'm usually much worse.

I'm starting to get really bored sitting around managing my cancer all the time. I wish I could leave this area for a healthier outdoor environment.

Hopefully I keep feeling better. I'm eating like a horse, but realized today I lost 1.5 lbs. Don't even know how that's possible considering the types of food I'm eating

cellie...
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July 28 - July 2...

By bad blow, I mean there are no effective clinical options left for me. For whatever reason, my body just refuses to respond to any type of medical therapy. Tagrisso, the highly advanced targeted biological made specifically for my dual gene mutation sequence 100% does not work for me (validated yesterday by doc + tests - in fact he instructed me to stop taking it). So, there's only one option left which was already dismissed when I started chemo as not being a good choice. The immuno-therapy method of Pembro. It was dismissed for my use due to the gene mutations - that's when we found out I had them. My insurance company felt it was so dangerous they never even approved it for me. I had another fine needle emergency biopsy yesterday to determine if the cancer has mutated again. They want 1 more full pathology of my cells to see if there are any type of national clinical trials I may be eligible for or if I can be approved to start the risk of taking Pembro intravenously at the chemo infusion center this Fri. So today is full of new diagnostic imaging appts PET scan, CT scan, MRI etc to get the latest lymphnode data.

Thx man - I know you are always there as a great friend to me. I'm fighting this all the way best I can. At some point one of the medications has to work - maybe this Pembro immunotherapy stuff will do the trick for me. I'm not giving up hope. Your concern + friendship means a lot to me - thank you!!!

Can't lay down - cuts off all oxygen. I'm sitting up in bed

Because I don't want them to cut my throat open which is what they will do. It's not that bad yet - just have to monitor closely throughout the night.

I am going in right now for emergency radiation therapy. Debra is driving.

I just woke up - going back to sleep soon. Not so great today, but better than this morning. Starting tomorrow, I will recieve 15 daily doses of radiation therapy. I was in the radiology dept all day doing tests and planning the schedule. This is sort of an emergency because they need to shrink the tumors asap since they are cutting off my oxygen supply. I will still receive the Immuno-therapy (Pembro drug) this Fri at the chemo Infusion Center. That one is supposed to be very good - I will get it every 21 days throughout the summer. Other than that, I'm hanging tough and remaining positive. The last 2 days have been very bad, but it looks like we're going to turn it around.

Ups + downs through the night. Starting Radiation Therapy today at 2:00. Should be a big help, but takes weeks to really feel the difference...


Got back from Radiation Therapy a little while ago. Went ok - you can't feel it and no side affects. I'm pretty tired - about to take a nap. Have to eat protien shakes and whey supplement mixes now - no more solid food for me for a while.

cellie...
 
to date... I only need to post this one since last entry., my friend is struggling terribly... cellfish...

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Not even remotely close to possible. Can't drink water, which is why I need daily hydration IV. I am literally choking to death every min of every day. Brutal the battle to simply breathe. Blender is out, ice cream is out all of it. Should be back to ice cream blender food maybe 5 more days, maybe more. Real solid food, even soft smooth food at least a week to 10 days. Sucks but this is part of the battle.

cellie...
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Avenger said:
How's your buddy doin'?
Click to expand...

Thanks for asking Avenger( let me know ya first name sometime.) please..

anyway my friend is doing poorly, he has a tumor in his throat, blocking everything... targeted radiation is helping only this week, last week was
Scary... can’t eat at all, water is a struggle, lost 60# since...

I’ll post some of his comments later at home, thanks again... michael aka cellfish...
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Saturday July 11 - 16....

No - hydration IV only so my kidneys don't shut down. Sleeping not so great. The doctors don't seem too concerned with excessive weight loss. If they don't get the 3 tumors crushing my lungs from 3 different sides under control, then none of it matters.

No, but they have stopped growing. The neck lump tumors are not so much the problem as the original lymphnode tumore between my heart and lungs - that one has grown huge

Unfortunately not after everything metastasized. That's when you go from Stage 2 cancer to Stage 3 - you become inoperable. The only choice then is Chemo, Radiation, Immuno. If Chemo doesn't work (it didn't on me) you go to Stage 4 which where I'm at - there is no Stage 5. Stage 4 where I'm at has not provided a lot of options in the past (almost everyone Stage 4 used to die within months). Now with Immuno Therapy + Targeted Biologicals Stage 4 peeps have a much better chance at full recovery. I'm feeling very positive about the Immuno I'm on - just takes time. The breathing issue came on fast out of nowhere and they have been dealing with it on an emergency level, but I am getting better each day.

Today I was able to walk by myself in / out of hospital. I have needed a wheelchair for the past week, so getting stronger!

Can't sip water at all - immediate choking and hyperventilation. I am urinating from the IV to keep the kidneys operational.

Feeling OK today. Breathing a little bit better every day. First day no hospital in a long time... Going to try to relax and get a little business work done. I'm dreaming about Pastrami sandwiches!

This week we're all looking for the major improvement. Everyone knew last week would get worse before it got better

Yeah - I can barely stand on my own two feet. Very shaky walking. Very hard to get up out of chair, bed, sofa. That's why I've been in a wheelchair for 10 days. I'm coming around though... getting stronger each day! I really need solid food soon to fight the fight.

Not really sure - dr is waiting for me to tell him what's what. He can see from the latest CT scan a few days ago, where the trachea and esophogus bifurcate into my stomach / lungs, the original lymphnode tumor has pushed my lungs all the way forward against my chest and have squeezed the diameter of the esophogus down to a pencil lead. That's down low closer to stomach. The 2 neck tumors are suffocating me from just above the Adam's Apple in 2 different directions. The Radiation is working on all 3. If I try to eat I can easily choke to death within mins - no time for 911. It happened last Wed from trying to eat - almost blinked out then spent 1 hour hyper-ventilating and coughing up tiny bits of solid food. Not doing that again, so I want to be sure next time. I can feel inside that I am just not there yet, but getting there soon - Radiation is definitely working. Which day exactly? Who knows...

Feeling pretty good today. I can cycle a full breathe around inhale/exhale without having to wait. I tried pea soup last night - it worked. Had to eat standing straight up at kitchen counter and lean head back, but I got a bunch of spoonfuls down. Better than just broth!

Getting there - still just water and pea soup, but a lot better than nothing!

Some people can handle crushing responsibility (like me), others crack under the tiniest amount of pressure (like Debra). It is what it is.

Tomorrow I have physical exam / plan review with both Dr. A, (Hematologist / Oncologist) and my new guy Dr. D, (Radiation / Oncologist). We'll see what they say. Mon when we reviewed my case file they both told me it was touch and go last week and that I gave them a real scare. I'm much better now, so I think they will be very positive.

A few hours, but bathing, dressing, taking meds, walking to car all that takes a lot of time. Mostly been on sofa - bed cuts off too much circulation in my legs right now.


No thanks - need a lot more strength before I'm going to see anyone, but I feel like maybe the next week or 2. I also want to be able to talk, which I can't right now.


cellie...
 
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July 17...

Last night was really really tough. I do feel better as of about 1:30 am and I'm doing OK now. Between 8:00 pm - 1:30 am I could feel death calling me. The will to survive got me through.

Yeah - resting. Radiation very tiring. Feeling OK. I ate egg salad this morning. Had sardines 1 hour ago. Have to go slow, but I need the protein badly. I'm going off a lot of my meds and others are being switched around, so it takes a lottle time to adjust, but I'm feeling pretty good.

Yes - not allowed to have more than 6 daily treatments in a row. Today was 13 out of 15. Mon + Tue last days of Radiation for now. Radiation was only an emergency measure to get me breathing / eating again. It has worked. Next Fri I get my 2nd cycle of the immuno-therapy drug Pembro. That's the cure if it works for me. Will be getting IV infusion of that every 21 days for the next several months.

Still can't speak. Doc showed me latest CT scans of what is happening to my vocal chords. They are surrounded by cancer, the chord on the left is being squeezed down pretty bad. He said there is a simple operation to fix it all, but I'd rather wait it out to see if it heals naturally - it is supposed to, but may not.

They're not sure. A lot of this is up in the air. I thought I would be able to speak again as soon as I could breathe + eat.

All cancer diets are like that. I have some strong drug side effects going on that require massive amounts of protein. Calories not as important now.

I'm done with cream. Been eating it 3x a day for 3 weeks straight. Chopped meat, sardines, eggs my plan for now. I still have to drink the cancer protein shakes - pretty nasty, but made for the job.


No thanks - need a lot more strength before I'm going to see anyone, but I feel like maybe the next week or 2. I also want to be able to talk, which I can't right now.

cellie...
 
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July 18...

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Exhausted. Radiation is tough on the body. Just finished food + drink routine.


I can only eat a small can of sardines at a time and 2 glasses of water/electrolytes.

No - bread stuff too scratchy

Can't get anything really going until I finish filing all my 2019 taxes. I was close to finished when the emergency breathing issue started. Haven't done anything since.

I though I might makenit out to the warehouse this weekend. No way - I can still barely get around without a wheelchair!

Just walked down to the park bench for a little fresh air + exercise. Walking so slow the squirrels aren't even afraid of me ?

Same as today - just rest and enjoy 2 days off from hospital

Going to head upstairs now. Park bench is hurting my legs + ass even though I brought a pillow.

cellie...
 
July 21

The usual. Last day of Radiation + hydration IV. Tomorrow will be a full analysis by the docs to see how we're doing. Feeling better today!
Yesterday was able to do a little light shopping after hospital. I paked in handicap spot right up front and rode one of those middle amercia fat ass scotters around the store. Worked out fine.

The weight thing is hard to explain. It is primarily being driven by the side effect of Prednisone, which eats protein and your muscles. Specifically thighs + biceps. It is a super strong steroid I need to breathe, until the radiation shrinks the tumors enough where I don't need the steroid (if that ever happens). We'll see...

cellie...
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for the folks who have been following my friends very, very difficult struggle, as of 3 days ago he was admitted to the ER and is being cared for wit comfort... it would be a miracle if he comes home...

this cancer thing touches too many good people before their time... a few prayers & thoughts would be appreciated,,, thanks? michael... cellie...
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my friend passed Thursday July 30, after 5 months of grueling discomfort... I know he’s comfortable now, thanks ? all... michael...
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last night while my wife ‘Michelle’ was on her laptop, this tool popped up on her screen... she said, “Michael, did you order this tool on Amazon, it just popped up” , I gave it a quick glance and said no”...that’s strange ok...

at 3 this morning while laying onda sofa, I say to myself, I know this tool, it’s when Lars and I we’re working on my car battery +18 months ago and we were commenting about how that tool was the perfect tool for what we needed...

I then realize, this pop up was my friend Lars telling me he’s ok ?

When I went to look for this tool on the laptop history, I wasn’t able to find it, but wit my iPhone, it took a while to track this tool, wit a notable symbol of heart ❤ included on the screen shot...

Hello Lars, we love ❤ you too.. m&m.

EC411CE2-403A-4EF2-8550-EA3574600259.png
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