My Quality of Life ‘Eval Bar’

I’m supposed to write about how I feel. That is what ‘Celeste,’ one of my cancer support group facilitators often suggests that I do. Much of the time I feel like crap. Mentally. Emotionally. Physically. Can I stop here? Or should I elaborate more? There is no roadmap for where I am. I have just lost several close friends from my cancer support groups. People who were guiding lights for me and all of us in our group. They each fought a heroic battle against a ravaging disease for which there is no cure. And now their battle is over. They are gone from this world. What good was their struggle? What did they teach me? What lessons could I learn from their heroic struggles against cancer? I simply do not know. There are no lighthouses left to help guide me. They are all extinguished now, Just neural network vestiges, silent shadows in my brain no longer guiding, no longer communicating, no longer controlling my muscles or suggesting what I should do. I am left to nature once again. Starting completely over. So I must take stock. I still have potable water. I still have food. I still have means to obtain more food and more water. I am still mobile – more or less. I can still care for myself – more or less. My home is still intact. And my wife, my first mate, my true love, is still with me, still loving me and still keeping our home neat and clean and comfortable as it can be. After 57 years!! So what to do? Keep breathing. Keep taking nourishment. Keep hydrated. Keep taking my meds, much as I hate them. Try to stay active. Keep exercising. Even though that is a painful struggle. Even though it doesn’t seem to be helping my body be stronger or less frail. Me exercising is akin to painting a barn that is on fire, an old barn riddled with termites. But, no matter. I do it anyway. It can’t hurt. And keep returning, constantly and continuously, as best I can, the love and devotion that my dear wife has so generously provided me over these 57 beautiful years! And lastly, try to stay connected with people. At least virtually. As best I can. And for the time being at least.

There is a Zen koan that says something to the effect, “When your life turns to shit go out and plant roses.” So I am doing just that. I was given a small rose plant a few days ago at the Conejo Valley Village 6th Anniversary party that I attended. So my wife went to Trader Joe’s and bought me two more just like the first. I was planning to put them in the planter box attached to the outside wall on our front porch patio just outside our kitchen window. But that area faces East and is shaded by the roof overhang. My wife says roses need sun. So I will put them in a wire basket hanging off the balcony railing. It faces West and gets lots of sun. I ordered this on Amazon. My little rose plants should be very happy there. Now that should make me happy too! One can only hope.

I am not in any pain or discomfort right now. I had a nice dinner Saturday which my wife and I prepared together, ‘Steve Hansen’s Famous Beef Stew.’ It has green veggies in it which should make ‘Hillary,’ my personal trainer happy. She is making me keep a nutrition and hydration log to go along with my exercise regimen. I’m writing this on my laptop computer to try and see if some of my neck pain is relieved by writing this way. My wife is concerned that my neck pain is related to cancer metastases in my neck vertebrae. She thinks I should have Dr Shen, my oncologist, give an opinion on this. Ever since I found out I have metastatic stage 4 prostate cancer, including bone mets in my neck vertebra C6, following my initial biopsy and Pet scan in Fall 2021, Dr Shen has not further examined me. Rather he has relied solely on my PSA and testosterone levels in my bloodstream. As long as those numbers are zero he doesn’t expect to find any evidence of cancer progression. So my neck pain is probably just an ergonomic issue with my desktop computer setup. That coupled with my ever declining vision due to AMD. But despite my terrible vision I was able to work as a tax volunteer in the Conejo Senior Volunteer Program VITA/TCE again this year, albeit as a virtual tax preparer working remotely from home via the Internet. But last Wednesday. I was invited to come in physically and work in their after tax season program which meets year round one day per month. I was told these would be some of our more difficult cases, people needing to file for past years, people getting tax liens, letters from IRS and so forth. But I got through the day. Four entire returns completed on site. I didnt fuck anything up. I didn’t have any unhappy clients or colleagues. And the very previous day, Tuesday May 2, I attended the annual end of tax season party for all of us CSVP tax volunteers. We had catered Mexican food and margaritas and all of us were given a nice Certificate of Appreciation wall certificate from our VITA/TCE program sponsors, IRS and FTB. This is proudly displayed on my office wall.

So for the moment I’ve pushed out my expected lifespan to about +4 years from today. It’s like the Eval bar on Chess.com, the online chess website and chess engine that I play on daily. On the side of the chess board there is this little indicator called an Eval bar, which uses a powerful chess engine running silently in the background to show how good my position is vis a vis my opponent’s. Play starts with the Eval bar in the middle.

After a few moves if the game stays even, the Eval bar stays in the middle. It then goes up or down from there depending on the quality of my play.

If I make a move as white and the Eval bar shifts massively towards my opponent’s color, black in this example, I know that I have made a terrible blunder. Then my opponent, the Chess.com ‘bot’ called ‘Li’ who plays at ELO ‘Expert’ level, my former chess rating when I was an active player during my youth, makes its move showing just how I fucked up. 

Then I hit the ‘Resign’ button and start a new game. 

So lately I have been using my own imaginary Eval bar to measure the quality of my life, doing my best each day to try to keep the Eval bar somewhere near the middle. But like Chess.com, this Eval bar can make massive sudden changes requiring me to rethink everything and try to get myself re-centered. Unlike chess.com I don’t have the option of resigning the game and starting over. That was unfortunately not the case with one of my dearest most beloved friends, ‘Flori’ from my LBL cancer support group, who actively chose life ending measures rather than continue her many year struggle with untreatable, debilitating terminal breast cancer which had so ruined her quality of life that she felt the need to hit the ‘Resign’ button and end her life at only age 65.

I hope I never reach that stage in my personal battle with cancer, the stage where I finally have to turn over my king and announce to the world, “My position is now hopeless. Its time for me to resign this game.”