You may recall that three weeks ago I shared the news that several of my chemo drugs had nearly destroyed the mucous lining of my nose. If left unchecked it would result in a perforated septum which would cause the cartilage to dry out leading to the collapse of my nose. I immediately discontinued using the offending chemo drugs and began a four times a day topical treatment. However, the last ten days or so I noticed a burning sensation in my left nostril. Was this the beginning of a perforation? The other day we saw the ENT doc and he was very pleased with my progress and doesn’t need to see me for six weeks. The burning sensation was just some minor irritation and nothing to worry about. Jimmy gets to keep his nose and doesn’t have to go plastic surgeon shopping!! Lee and I decided to celebrate and dined at a James Beard award winning restaurant, Pizzeria Bianco. Oh…was it gooooood.
It’s been nearly a month since I have had any chemo and I feel great. Can’t have that, so it is time for more chemo. Today I started my TAS-102 (clinical trial name), the brand name is Lonsurf. This drug has only been available for 9 months, so no one really knows how it will affect me or if it will kill the tumors. There are educated guesses for sure, but guesses nonetheless. With TAS-102 the guesses are less educated since there is less data from which to make their guess. There are the common chemo side effects, but the big one is the assault on the immune system. Risk of infections are high because it impacts the production of white blood cells. Transfusions, as well as excessive bleeding, are another common side effect since TAS-102 often has a drastically adverse effect on the platelet count. I have alerted my awesome immune system of the impending attack. As of yesterday my white blood cell count was a solid 8,100 and my platelet count was a battle ready 497. Interestingly my CEA cancer marker dropped again down to a NORMAL level with no chemo for over three weeks. Hmmmmm….maybe I should just stop this chemo nonsense and see what happens? Of course the CEA marker is not a definitive indicator, just like a PSA for prostate cancer is not a reliable indicator. It’s all guesses, I guess I’ll just try TAS and see. At least I’ll provide some data for future guessers to use.
One of my artist friends, Mike Spanopoulos, suggested that the Tasmanian Devil we posted be Jimmyizied. Good idea Mike! Below is the Jimmy TAS. Instead of brown, he is a more powerful green and yellow combination infused with Oregon Duck magic. Instead of a regular dust trail, it is Zinfandel dust. He holds a bottle of “Die Cancer” poison to get the job done and a bottle of “Jimmy’s Good Stuff” for nutrition…he must stay strong for the fight!
And now for a different topic. I sincerely apologize for my last post if I alarmed or distressed anyone by using the “H” word. The “H” word being “hospice.” As Ricky Ricardo would say, “Let me splain.” From the beginning of this blog I vowed not to chase rainbows and to keep it real. Hospice has been part of the plan from the beginning. Studies show that the quality of life is better and the QUANTITY of life is longer if hospice is begun sooner rather than later. My goal is to live life to its fullest as long as I can. The plan is to begin hospice when there is no longer a good option for treatment, by that I mean treatment that will do more good than harm. No chemo will cure me, at best it is a way to buy time. Bad chemo can kill me before the cancer can, so prudent choices are in order.
I have not given up. I am hopeful that Lonsurf will work and extend my life. If it’s not working, then I can extend my life by discontinuing the poison and move onto hospice care. I can change my mind and go off hospice if a better offer comes along, like a good clinical trial.
In the meantime we will continue to look for immunotherapy trials. We have recently come across several new and exciting developments in immunotherapy for colon cancer. We are hopeful for opportunities before the end of the year.
My greatest fear, dear reader, is that my legions of supporters may think of me as a dead man walking and avoid me because they don’t know what to say, or feel that I am too ill to have any fun. Not true! All comments, questions, thoughts and feelings are welcome. I have no secrets and both Lee and I are doing okay. Jimmy is still the same goofy Jimmy.