Negotiation 101

Today - Doctors/Staff : "You don't get paid for being a human guinea pig. But you don't have to participate in the drug trial."

Me: "Uh-huh"

Doctors/Staff : "These have been shown to cause leukemia sometimes. But again you do not have to participate in these trials."

Me: "Uh-huh"

Doctors/Staff : 'And...."

Repeat 20x or so.

Me: (Despite the fact that all treatments have been used up and I have cancer every where that will kill me in the not too distant future as things stand, holds firm to my inner and external lawyer) "Fine, give me a hat and I will sign the papers. No hat, no deal."

So going to get set up for a CT scan in the next couple of weeks. Then a biopsy. I miss those. Have not had one since 2018. Then on a 21 day cycle of the trial drugs. But I am only given the pills 21 days out of each 21 day cycle...ummm...I only have to drive 80 miles/2 hours each way for things...ummm. I GOT MY HAT!!! #Winning

Playlist Update

 The Final Countdown

The End of The Road

My playlist (in my mind) got pretty small last week. On Weds I was told the chemotherapy stopped working and I was done taking the pills. No matter how much chemotherapy is not a bundle of joy, when you are told it is no longer working, it stinks. I miss feeling like ##%&#&#*#, because at least I know the cancer is at bay.

I immediately contact the trial I got into last year. We were just waiting to see how far the Lonsurf would go and ride that horse as long as possible. Still have not heard back.

I had also been remiss in not exercising for a few days. I had not seen my brother or his children in close to 20 months. The longest ever in any of their lives.

But anyway, once I stopped using the excuse (not going to happen next time, I will train, but maybe not crazy long rides or runs) and they left, I dusted myself off and got back to it. The exercise has kept my lungs clear, which is why I find myself coughing more during workouts as the cancer blocks certain things that need to be cleared out. But I do ;)

And yesterday on the run, 4.3 miles after a day of shooting baseball, Lose Yourself came up on my playlist. I put it on repeat for the last couple of miles to keep going. Awesome song and fit my mood.

"Look

If you had

One shot

Or one opportunity

To seize everything you ever wanted

In one moment

Would you capture it

Or just let it slip?"

And each time I came to the following line, I just ran harder.

"Success is my only mother*****' option, failure's not"

I do not have the luxury of failing on this.

But I am back into figuring out all the next moves.

@itri4acure @embracetheslow

PET Scan results

Had a PET Scan and MRI of the spine. Results up fast, but still need to speak with doctors. Have a good sense though what is going on.

Looks like the old tumor that was radiated is not active/growing. So that means probably no radiation to help with pain on that area. It is manageable. Sometime within an hour of waking up I find myself on a heating pad for a bit. Then sometime during the day I will get some pain that lasts a couple of minutes. But no prolonged outbreak of pain. Trying to see if positional changes can help, more so because it seems sometimes exercising does hurt, where it did not before.
Dealing with allergies, so I hope, but there is always the nagging thought it is something more.

The largest tumor in my lungs is 6.4 cm x 5.4 cm, up a bit in one direction (from 5.8 to 6.4 in two months, .1 cm down in the other direction, 5.5 cm to 5.4, but that could be within margin of error). For giggles I made a 6.4 cm x 5.4 image in Photoshop. But that is somewhat difficult to relate to. So I took a photo of some coins. The width of two quarters and a nickel are right about 6.4 cm. The height is short (4.8 cm). But it gives an idea.

I guess that is partly the reason, together with chemo, that I am getting slower on biking and running, though yesterday I tried to run as hard as I could for about 1/10 of a mile. Was slight false flat downhill. Made 46 seconds at a moving pace of 7:58.

But otherwise for running in general, I am having problems going under 16 minute miles for any length of time. Going to keep on trying bringing more speed work in to see if it helps. I know there is some slowing down from year to year, but I am hoping to get back close to 2018 speed. I had only been training for about 6 months (9 months total) when I did AC 70.3.

Off to bike shortly.

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

6 Years

There was never a day when I was "officially" diagnosed with cancer in a  devastating moment like they show on television - whether a commercial for the latest and greatest drugs or the countless medical dramas

It was a slow movement from one thing to the next.  So I have a couple of dates which could qualify as a cancerverssary,

It started with a suspect shadow.  Which was followed up by a couple of scans, with one indicating looks like cancer.  

It was followed by a consult with the surgeon that would  do a biopsy.  He told me half the time the scans are misleading.  Often it was not cancer.  And even if it was cancer, it looked like it was minor.  I would not even need chemotherapy.

When I woke up from the biopsy 6 years ago today, he told me that I needed to find a surgeon immediately.  This was based on just the visualization of what was happening.  The results of the biopsy were still a couple of days away...

 Looked at the CT of chest, abdomen and lungs.  Looks like last scan.   There is so much there that it is difficult to tell.  

Each image slice is 1.25mm and it is difficult to line up exactly.  Some stable, some might have grown, some might have shrunk. 

The one that marked is one of the larger ones.  Close to impinging on my airway.  We were considering radiation for it last year.   

Also have been having a ton of back pain since late summer.  3 months of PT really didn't help.  So had a MRI of spine the same day.  I cannot read those at all 

Still awhile before I get a report or speak to the doctors.  The only thing of a bit of concern is that I had an appointment scheduled with the radiation oncologist when I looked at the portal.  It was added since I had the scan.

I have not had an appointment scheduled with them after any of my MRIs of my spine since I had radiation treatment.  That is at least 4 MRIs I think.  Could be nothing.  And I will try to be patient.  

But....