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(Created page with "Hello everyone, This email is going to be difficult because I've been very optimistic about my lung cancer over the last 22 months, but I got a PET scan and the results are not ...")
Latest revision as of 19:43, 29 May 2018
This email is going to be difficult because I've been very optimistic about my lung cancer over the last 22 months, but I got a PET scan and the results are not good. As usual the images inside the lungs is confusing but it looks like there's some growth there. But the disturbing part is there is a new metastasis to a muscle in my back. So the cancer has spread, and that's never good.
As you know I've been experimenting trying to trigger what is know as the abscopal effect and about a year ago I thought I had succeeded. In fact I do think that I did trigger an immune response against the cancer, but I couldn't sustain that response. Perhaps that's part of why so few people actually manage to clear their cancer completely. I still think it was a good idea and everything I tried might work for other people. But it would seem that my cancer can't be cured using this technique. I could go on about technical details but the possibility that I had managed to figure out a cure is now gone. I had gotten to the point of thinking that I might not have a terminal disease anymore, but that is now gone.
No one can tell how much time I have left but one of my oncologists said I have months, not years, but also not weeks. But the time scale is very fuzzy and "months" is a very imprecise average with a wide latitude. Much less precise than my original prognosis. So don't buy plane tickets to my funeral yet.
I have managed to cheat death somehow so far and I'm now about 3X my expected lifespan and probably 5X my expected healthspan. I'm still feeling pretty good still, although going from expecting a Nobel prize in medicine to back on death row is not an easy transition to make. But I suppose since I've done so well so far I have little room to complain overall. At the time I was diagnosed I thought if I was lucky enough to get 2 years, that would be fantastic.
One thing I want to say this time however is that just because I managed to cheat death so far doesn't mean that will continue to happen. I'm feeling a lot of pressure from people to stay alive and be some sort of comic book super hero. But I don't want that expectation. If the time comes where I need to die then that's something you're going to have to deal with. Everyone needs to lower their expectations because this doesn't look good. But I'm not ruling out comic book super hero, so don't give up either. It's not about expectations, it's about working the problem. The Reality however is that there may not be a solution available to me.
It is very unusual for cancer to jump from lungs to back muscle tissue without going first to many more usual places. All the oncologists in my world are completely confused by what's happening so I'm in an environment where answers are not going to be coming from them. And I too am confused. But I'm trying to figure this out and my assumption is that it's a clue, not an anomaly. And the question of "Why am I still alive if the abscopal effect didn't work?", is also a clue.
I have a working hypothesis that explains both and I'm working on a plan that, if I'm correct, might at least buy me more time, possibly a lot more time. It's based on the idea that cancer is a metabolic disease and not a genetic disease, and there's an overwhelming about of evidence that supports this model. It explains that the reason I'm still here is that my supplement cocktail is was has been keeping me alive and I can enhance that with a no carb diet, to starve the cancer of sugar, and hyperbaric oxygen to screw up the fermentation metabolism of cancer cells. But it's a work in progress.
To that end I have decided not to get radiation to my back muscle. I do have soreness there and it is a reminder that this is really happening. But it also gives me a way to test different treatments and determine their effectiveness by how sore my back is. I'm going to use it as an opportunity to monitor progress.
People have asked me what they can do for me at this time. And right now I'm fine. Obviously I'm not happy about this and I'm still adjusting to the news myself. At this point don't ask me a lot of questions because the answer to almost anything is "I don't know.", Including ever questions like "How are you doing?". Don't pray for me either because the religious world is working to take away my right to terminate my own life when the time comes and I'm not the least bit interested in people's invisible imaginary friends. Good wishes is fine. Doing medical research and helping me work the problem is even better. It's like the movie "The Martian" where I'm going to have to science the hell out of this situation.
So - I feel strange again bringing bad news after good news. And there might be good news again at some point and that will be eventually followed by bad news as well. But at least I'm still on the roller coaster.
I do want to thank all my friends who have supported me for the last 22 months and the fantastic staff at Kaiser who have given me all the weird treatments I've asked for. And I thank them in advance for giving me all the weird treatments I'm going to ask for, and that is coming soon.
But - I need to stop rambling on and I'll let everyone know something when I know something.