amazon smiles

 For those who do not know, iTRI4aCure is the 501(c)(3) I started for cancer patients and research in 2019. When my cancer came back in late 2017 for the third time in three years, inoperable, I started training for triathlons.

The link is: https://smile.amazon.com/ch/83-2556004 (Image is not an active link)

Finishing my first race, and each race thereafter, is an incredible feeling. The doctors are pretty certain that the training has allowed my cardio-vascular system to compensate for my condition. In addition to cancer in my lymph nodes and spine, I have dozens of tumors in my lung and had part of my left lung removed in 2016.

One of the primary goals continues to be to set up training for cancer patients to be able to participate in races either individually or as a member of a relay (including with friends and family). Hopefully this can be done in the not too distant future.

I have not, for the most part, been actively soliciting donations or selling iTRI4aCure items since the pandemic started. I did not feel comfortable doing so.

But I did register for the amazon smile program. If you purchase anything on amazon, and designate iTRI4aCure as the charity, a portion of the sale, 0.5%, will be donated to iTRI4aCure. So if you are shopping at amazon anyway, and can designate iTRI4Cure as the smile charity, that would be great. The link is: https://smile.amazon.com/ch/83-2556004 (Image is not an active link)

Pain and Blood and Dinosaurs Too

 At Memorial Sloan Kettering for blood work to see if my counts are good enough for next round of chemo starting Monday.

They are often close and may be why I am a bit more tired. Had a pleasant surprise. A cup to fill I figured out why - meeting with a pain doctor today. Guess they don’t want me scamming drugs. Makes sense.

Looking at my prescription history it is pretty clear I am not using them that much. A 30-day prescription can last me 6 months or more as I avoid taking them. I want them to remain effective for when I REALLY need them. Plus it is kind of hard to fake the scans showing tumors in my back and spine.

There was going to be radiation treatment, which required COVID-9 testing, so I also was going to have a test for the COVID-19 antigen. The test was still on to see.

Fill 'er up!!

The blood work for the Coved antigen was not drawn while my port was accessed. So they had to draw a sample via a vein. It is no secret I am an overgrown child. My wife has Spider-Man, Avengers, Minions and other band-aids ready at all times to stop me from whining when she removes the chemo needle from my chest or general use. Smart move. So when they came into draw the COVID-19 test, I had to ask about lollipops. And cool band-aids. The person drawing blood promised me something special, but I wound up with a standard bandage.

DINOSAURS!!!

As I was leaving the room where they took the blood, she was in the hallway with three bandages. One was a dinosaur. YES!!! I looked at her and I said I would give her a big hug if it wasn't for COVID-19.The discussion about bandages and lollipops, all of laughing and smiling while going through all this, it helps make things better.

I wound up meeting with the people from the pain management section to address the back pain. As been the case since I started, I was real happy with them. Straight up in approach, discussing options and details.

From everything in the scans and my descriptions of the pain, it is from the oldest spinal tumor - the one that went in the Psoas muscle going into L3 that we radiated back in 2018. It turns out that after a bit of good luck - Lonsurf working generally and getting into a drug trial [if needed] that about 25% can get into - I have slid back to the snake eye roll.

The location and positioning of the tumor where it interacts with the muscle, bone and nerve channels means that most interventions will not work. Epidurals, cortisone, etc are basically off the table. The doctor was great in explaining why. He said some doctors may try it, but the bottom line was it really would not do anything. Radiation (if it turns out the tumor is active based on the next PET scan) would be the option if the pain can be confirmed as tumor activity/growth.

The steroids I have been taking the last 3 weeks seem to have calmed things a bit. So the pain is really pretty manageable. No 45-minute of pain of 30 on a scale of 1-10. I get a "hit" sometime in the first hour of waking. Maybe during the day. Lasts a minute or so. No prolonged high level pain for a most part.

Will see what happens when I am done with the steroids. Hoping maybe it will carry over and inflammation, or whatever mechanism is in play, stays low for a while. If not, they may add Lyrica. I asked about exercises to help. Core workouts - I am going to start planks again - could help. Sit-ups are no go. Open to any other suggestions for good core workouts (and exercises/drills to ensure an even gait) are welcome

I held off training for a few days before today to once again test to see if it changes things, and wanted to make sure I was right in my statement that there is nothing I can point to which triggers things. So after discussing all things with the doctor today, I came home and did 11.5 mile bike ride on the trainer. #iTRI4aCure

PS I am COVID-19 antigen negative. Still waiting to see what drugs they may find in my system