From Computer Tyme Support Wiki
Dear Friends and Family,
As of August 1st it's been one year since I was diagnosed with stage 4 lung cancer and this is already longer than I expected to be alive. And I still feel almost normal.
In my last email there seemed to be some evidence that I might have cured my cancer. I was symptom free when I wrote that. Since then there has been an increase in symptoms by far less than what I had before the treatment. And the increase is just enough to make it a true mystery about how successful that treatment was. So I am lowering expectations somewhat and we will have to wait and see what the results are.
In about 3 weeks I will get a PET scan and then we will know. PET is based on an injection of radioactive sugar and live cancer processes sugar differently than normal tissue and will light up on a scan. But at this point the coin has been flipped and is still spinning in the air.
I'm expecting one of three possible outcomes.
The best outcome is that I triggered the abscopal effect and that I'm completely cancer free. And that would be great but still in the too good to be true category. But it could happen.
The worst outcome is that the radiation did massive damage to my main tumor, but other tumors have crown and the cancer has spread.
And a middle ground would be that there was an abscopal effect and all tumors are reduced in size, but not gone.
When I started this experimental treatment I had no expectation that it would work on the first try. So I was very surprised when it seemed to have worked. So I had expected to make several attempts which each attempt getting better based on what was learned from earlier attempts. So even if the first try failed, I still plan to try more than once. And I am still planning the next try even though the first one might have been successful.
Of course I need to see the results of the first one to decide the second one because the first one had such a dramatic effect. I need to see where the cancer is now and select the best targets for radiation. The second try will use less radiation using a more precise machine and a more accurate geometry. I will also increase the immuno drugs and possible use 2 or 3 of them together.
So - let's all hope for the best but keep in mind that even if it doesn't come out that good I'm still doing well and there are more attempts to be made. So far I'm beating it and I'm already 4 months past my 8 month point which is the 50% life expectancy, and I'm almost normal. I'm going to be 62 soon and I expect to make it to 63. I'm no longer designing my memorial coffee cups, but I'm not writing my Nobel Prize acceptance speech yet either. And the contrast has been very disorienting waiting for the results.
The best way I came up with to describe my situation is imagine an 80 year life spam compressed to an 8 hour party. I arrive at the party at noon and I'm expected to leave around 8:00. But at 6:04 they tell me I have to leave early and I have 4 minutes to get it together and say goodbye to everyone. I'm not really wanting to leave, but I've already kissed all the girls and had a good time. So if I have to - it's ok.
Then they say, if you can solve this riddle you can stay till 8:00 as an honored guest, but no one has ever solved the riddle before. And if I solve the riddle millions of other people who were asked to leave early can stay too. And, it looks like I might have solved the riddle but they haven't yet told me the results. So my friends are asking, "Well are you staying or leaving?", and at this point - I don't know. But no matter how it comes out I think I'll at least get an extra 6 minutes.
The bottom line is that no one has ever done what I just did and there is no way to know the odds. So I'm just going to have to live with the mystery for 3 more weeks. But the results are only final if the news is very good. And even if I dropped dead tomorrow I still did far better than average. So this is already a win.
Marc Perkel Random Genius Twitter: @mperkel