I believe it is Tuesday, October 29, 2019. I just spent a week at the UW Hospital. I have Mantle Cell Lymphoma. It is incurable, however, it can be treated. Some patients get an extra decade or more. With that said, the odds of that in my case are not good.
When I walked in on Wednesday they said I had a month, possibly two to live. I refused to give consent for treatment until they put numbers on it.
I had a number in mind before I would consent to treatment and they just beat it. Twenty-five percent or less and I was not going ahead with treatment. They gave me a thirty percent chance to gain full remission. I am not favored to win this race.
The number I refer to is the odds I would get that extra decade. This is no fun and to do this with minimal chance of getting that ten is not how I want to die or live my last days.
There are two variants of this cancer. One which lends itself to treatment and one that doesn't. For the second one they go to bone marrow transplants and several non-FDA approved treatments. I told them if I have the second I stop, and if that number gets below my threshhold I stop.
This last week was no fun and I was told as soon as I begin feeling good again, we go right back at it. That is not how I want to die, nor live.
I am retaining a lot of fluid, including my left lung. My feet, ankles, calves, and toes looked unreal.
When I first arrived in the hospital my cancer cells were multiplying at a rate of 70% at a time. I was told that dead cells leave the blood stream as uric acid, which is normally about 1% of a person's blood. Eight percent is dangerous and, due to the fastly growing cancer cells, which die quick, mine was over 10%.
My immune system is compromised so they have me in medical isolation, which doesn't do anything for the spirits, until they can find a single cell for me that is wet (i.e., that has a sink and toilet). They don't want me picking anything up from someone else. I have a book and this tablet, but no Wi-Fi access. Nausea too.
Nausea has been worse than the pain. But, overall, I just feel icky.
I struggle to eat but on the last day at the hospital I finally found something that went down smooth. It wasn't the shrimp linguini, or the pizza, or the chicken alfredo, but the mighty 24¢ popsicle. You bite a little off, let it numb your throat, then let its cool sugary goodness slide down. When the effect wears off take another bite.
It is July 16, 2020, two days after I learned I fell out of remission. I am depressed. They also have me in isolation to protect the prison from the virus which causes Covid-19 because I left the prison. The staff leave the prison daily and some other Wisconsin prisons are no longer doing this. But I digress.
I had a PET scan working towards high density chemotherapy which would then require a bone marrow transplant. The PET scan revealed five new tumors. Three deep in my sinus cavity, one in my lung, and one to the right of my right eye. A biopsy is supposed to be scheduled.
The literature reflects that secondary treatments for mantle cell lymphoma is minimally effective. I expect to be alive and feel okay this holiday season, but I really have no say in the matter. Christmas 2021 I believe is doubtful.
I am just really depressed. I know I should push myself to get some artwork done but it is a struggle. I need to get the painting done for my brother Dustin's wedding.
I also need to push to get moved back to G North with my friends and support group. I want to spend Christmas with them. I just do. Now I am getting all teary-eyed.
17 July 2020
I noticed last evening that my right eye was partially closed. That is the eye that has the tumor next to it. That seems to explain my blurred vision I have been dealing with lately. I have trouble seeing things when I paint and the written word can be fuzzy.
It is not as closed this morning as yesterday. I believe this is where I just begin to head downhill. Unlike RoboCop, they cannot fix me.
I also had chest pain this morning. I have a tumor in the lung too. But much of this could be psychosomatic at this point. Last summer the chest pain I experienced was the sharpest pain I had tied to the cancer. Yet the abdominal pain was the worst. The chest pain came and went, while the abdominal pain never let up.
I was working on a painting last night and was highly pleased with the results. I taped it to the wall, stepped back and found I needed heightened value contrast. Back to the drawing board.
20 July 2020
They gave me a lactate dehydrogenase test today. They are trying to determine the amount of lactic acid in my system. My cancer cells proliferate at a high rate. Cancer cells, in general, also die quickly. And dead cells are released as lactic acid. So they are trying to determine what is going on with the cancer.
With the cancer back, and showing, again, I decided, as an artist, to document it. I need to keep at it and document it with a series of self portraits as long as I can. It restores a modicum of purpose to the little time I have left.
I am exercising again. The fighter is back.
21 July 2020
Things are going to hell in a hand basket quickly. Just this evening a tumor on my left jaw emerged. Not that it is easy to see because I am struggling so much to see. The chest pain is still here. I expected that I would be okay for this Christmas. I find that possibility to be less likely now. The mantle cell lymphoma is coming back with a vengeance. This will have an ugly ending much much sooner than I hoped or the doctor expected.
I asked her how long until we expected to see disease progression on June 10th. She replied four years. Thirty-three days later disease progression was picked up in a PET scan. Eight days later it has begun to go wild.
22 July 2020
I went to UW Health to get my biopsy today. They took three samples from the tumor to the right of my right eye. They said the tumor was small, making it difficult to obtain three quality diseased samples. Hopefully, they were successful.
Reading the paper tonight I noticed two new tumors on each side of my upper jawbone just in front on my ears. I am running out of time, fast.
I really need to buckle down and complete some artwork while I am still physically healthy enough.
I talked to my parents. My dad ordered me 25 envelopes. They seem to be doing okay. My mother continues to have advancing health issues.
I still have been unable to purchase toothpaste through canteen.
Every time a prisoner leaves the prison they are placed into forced quarantine for fourteen days. I have made six hospital trips in the last forty-three days requiring me to be held in a seven by twelve foot concrete, cinder-block, and steel vault for the duration. My window looks out to a concrete wall.
My fourteen days begins anew again today. I expect to make another trip to the hospital before those fourteen days are up.
1 August 2020
The pain ramped up another notch yesterday. It is getting to the point I am considering using the oxycodone, something I am loath to do.
They also moved me yesterday, yet I am still in quarantine. The move is not conducive to being ill. If I want to shower I can only do so between 11:30 PM and 12:30 AM, then must be up and dressed at 6:10 AM. I require sleep. Uninterrupted sleep.
6 August 2020
I am off quarantine and ran three miles each of the last two days. Yesterday the chest pain was something, even with taking the oxycodone. It is only 5 milligrams.
I was able to spend some time painting with my friend Kabe Harrah this morning. I talked to my parents on the phone yesterday. Plus all the property that I had been waiting on and was told was not being held in the property department suddenly showed up.
This is much better.
I started the targeted therapy drug Zanubrutinib yesterday. The tumor near the right eye is really getting large and vision is a challenge. Try painting and reading with that.
Let's hope this drug is effective for me.
7 August 2020
I ran another three plus miles. It really is 5 kilometers. I also did a pencil drawing of myself. For some reason I am distorting all of them, making my face too narrow. Other than that it is good.
I believe I am having some response with the Zanubrutinib; the chest pain has lessened and the tumor near the eye seems to have shrunk
 |
| Dominic with beard |
.
No comments:
Post a Comment