Wednesday, Dec. 25 -
Merry Xmas and Happy Hannukah - the candles are waiting tonight after we get back from China New Star on Flatbush Ave. later.
Chemo 8 - week two -Chemo 9 scheduled for Dec. 31 - But at least my TDA distribution comes through that day.
Since my health update when I got out of the hospital (I'm Baaaack - Norm Almost breaks Medicare after 15 days at MSK Hospital for Pancreatic Cancer Surgery), I've been asked how am I doing by a number of people (thanks for the concerns).
I came back from a two week trip to Spain in October, 2024 at 200 lbs. Now I'm 170 - which is not the worst thing. Symptoms began around Thanksgiving 2023, but who thought of pancreatic cancer, though it was on my mind due to a very close friend dying of it around that time 3 months after diagnosis. My mother-in-law and another close friend died of it too so it has never not been on my mind but I never thought it would hit me too.
Well the good news was that my recovery from the operation went well and I regained most of the weight I lost while in the hospital. I was feeling great by early August when I had a teleconference with the oncologist who said I looked great but now they'd have to beat me up again with 6 months of chemo given every two weeks. First I had to have a port installed in my upper chest so they wouldn't have to tax my veins. I have this bump with a wire running to my neck. Don't mistake me for Frankenstein.
The chemo regimen goes like this:
FOLFIRINOX, a combination of three chemotherapy drugs (5-FU/leucovorin, irinotecan and oxaliplatin)
First they take a blood test and wait for the results before deciding to give the chemo. Takes about a half hour. The chemo session itself involves giving steroids and anti-nausea meds first, followed by chemo1- oxaliplatin- for an hour and a half, followed by an injection to prevent pain from the next chemo2 - irinotecan - which is a half hour, followed by hooking me up to a 48-hour chemo3 - 5-FU/leucovorin- drip pack connected by a tube taped to my stomach to my port. Two days of awkward trying to manage the pack. I guess that's better than trying to load all the chemo into me in one shot. After 48 hours I go back to MSK to have my pack and needle removed and they give me a bone injection shot to help produce white blood cells.
I found out after my first chemo that two weeks later my wbc had dropped too low to give me chemo and they gave me two days of short term bone shots that caused a lot of bone pain in my ribs and spine. But they assured me the long-term shot would not be bad and it hasn't been. They postponed me a week but the day before my chemo I tested pos for covid and MSK has a two week quarantine so chemo 2 didn't come until a month after chemo 1.
Since then I have been on target. I scheduled my chemo on days that would not stop me from attending the DA and RTC meetings. With RTC meetings off until March that makes the rest of the scheduling easier - I prefer Tuesdays so I can get disconnected Thursday and go back to Rockaway. The first days of chemo are not too bad - I seem to get hit a week later with inability to eat for days and have lost 6 or 7 pounds in those days. Two weeks ago I briefly hit the low 160s for the first time since I was about 9 and looked like a skeleton but I'm back to 170 and looking better. I even started going back to the gym. I need some muscle mass - arms paper thin - don't ask me to make a muscle.
One more thing.
chemotherapy can cause peripheral neuropathy, a condition that occurs when the nerves outside of the brain and spinal cord are damaged. This is called chemotherapy-induced peripheral neuropathy (CIPN) and it certainly has for me so far but not terrible with some tenderness in tips of my fingers and toes.
The oxaliplatin for an hour and a half is the big culprit and when things got tough around treatment 6 they decided to make that the last time they would give me oxaliplatin with the idea not to kill the patient with the cure. I was concerned that not taking this hurts my long-term chances but the nurse told me the DR never gives oxaliplatin past #8. I know a 5 year pancan surviver, a doctor who is my age, who has some permanent damage and he went with oxaliplatin through #10 when the neuropathy had reached his knees. He felt she should have stopped it at #9. I also have a friend with a more severe case of pancan who went the full 12 and now can barley walk or use his hands to open a door.
So though I had tough days after chemo 7 - 3 or 4 days of no eating, followed by a few hyper days, today starts week 2 of #8 and my doc gave me a prescription for cannabis and I went to a nice place that does med cannabis and they gave me a spray and a pill to take for appetite stimulation and I started fooling around with it the other day.
One slight but of good news - I hope - is the blood marker CA19-9 which is not normally done but is a sign of pancan. My number on diagnosis was 230 - normal is 40. That cinched I had pancan. My friend's number was 1800. My doc friend told me to get a marker of CA19 before my first chemo and I had to push them to give it to me. It dropped to 19 - so removing the tumor of course was major good news. I took another CA 19 last week and it was 26 - stat insignificant -- so far -- they will watch this number after the chemo - which when it wears off may open the door for those invisible proto-cancer bastards that are not killed can come back.
Anyway, I'm hoping my last chemo #12 will be on Feb. 11 in time for my 80th birthday first week of March.
The election stuff has kept me engaged and active and working with some fun young people. Arthur's recent blog captured my feelings of the sense of fun and freedom working with ABC. I've been invigorated despite the chemo.
We are doing a retiree event on Jan. 5. Here are excerpts from Arthur - who hates meetings but is having a nice time when ABC meets or chats.
All ABC Wants for Christmas...
...is a responsive union.
Happy holidays to all. I wish you a joyous and fulfilling week off. I’m working with a new and different group, for me at least, and I’m excited. I’ve been composing a presentation to share in our next forum on January 5th at 7 PM . This one is for retirees and if YOU are a retiree, I hope you will join us.
I was at the very first meeting of what became ABC, last April, if I recall. It was pretty rough. There was no particular agenda. There were maybe 25 or 30 of us. I then lost touch for a few months, but came back at the urging of Norm Scott, for my money the gadfly / conscience of UFT. (I suspect he was born retired, but he insists otherwise.)
I started going to meetings, and the oddest thing happened. I started actually enjoying them. I hesitate to admit this. It may tarnish my reputation. The Unity trolls like to call me angry, among other things. And why not? Name calling is a whole lot easier than actual argument. And what can they argue? That they were right to sell us out?
I know, for teachers, worthwhile meetings are borderline inconceivable. We’ve all been through meetings. Our vision of hell is the endless faculty meeting, with the principal droning on and on about Some New Thing that, within months, would be discarded and replaced, just like Every Other Thing he’d talked about.
ABC meetings were different for me. They weren’t dominated by any one person. No one had an agenda that precluded anyone else’s. No one talked about how smart they were, or the brilliant deals they’d made. We talked about what we read on surveys. We talked about building a platform by consensus, from comments we’d received. We talked about sending it back for approval.
I wrote nothing in the platform, but I edited it for brevity. After eliciting feedback, it appears we are going with it. There are things I’d like to see there that didn’t make it, but as part of the group, I’m going with the flow.
I see things changing. I see new possibilities. I see Unity members waking up and questioning whether their gigs are worth the terror and loathing of constantly appeasing King Mulgrew. I see better things in the New Year.
I envision A BETTER CONTRACT with both the city and our union. If you’re a retiree, join us on January 5th. Help us figure out how we get there. If you’re in service, you’ll get your chance too. I’ll keep you posted.
