What do you do when you're faced with a life-threatening disease, and you have to figure out how best to treat it? You take your time, review all the tests, debate all the options, get a second opinion, pick an option, and go with it.
But what do you do when that option is suddenly called into question? Then you run some more tests, get the people with conflicting opinions in touch, go back to the original doctors, have them review their own decisions, and go from there.
But what if that just produces more confusion? What if everybody becomes entrenched in their position? Well then you seek out some more opinions. And you come up with a plan: If the additional opinions come out one way, you do X, if they come out another way, you do Y.
What if your best laid plains lead to an interminable, agonizing wait, with your life quite literally hanging in the balance?
You get in the car and start driving. You move into a new place. You start work. You move on with life. Because that's really all you can do.
And what if, at the end of everything, you still don't know what to do?
I don't really know. I can tell you what I'm going to do though: I'm going to go to work today. I'm going to do whatever it is I do there (maintaining confidentiality because I'M ETHICAL!). I'm going to come home. Eat dinner. Maybe go to the gym. Then I'll do the same thing on Thursday. Probably go out to dinner on Friday. Maybe do some ice skating on Saturday. Gotta get some pants this weekend. Then back to work on Monday. Wing night on Tuesday. Bill some hours on Wednesday...
And I'm not going to worry about fucking cancer because I don't want to, it's stupid, and it's not going to change a damn thing.
***
I always said that I wanted to make the best decision for me, regardless of what that was. And after everything I heard, after all the crap I waded through to get to this point, I decided I would do this: absolutely nothing. So I told that to Dr. Li:
Dr. Li,
After taking everything into consideration, here are my thoughts: I'm not going to do anything right now. I'm going to get another PET scan at some point in the future: Dr. Anderson, Dr. Al-Katib and Dr. Zelenetz (Sloan-Kettering) have all recommended I do that in March; perhaps you have a different view. If we're still seeing residual activity at that time, I think everybody would be on board with more treatment. If there isn't residual activity at that time, I might lean toward the CNS prophylaxis.
My main question is "How late is too late?", meaning, at what point is doing any additional treatment a moot point? As of right now, my plan would be to get a scan in March and then go from there. Let me know what you think.
And the response:
Nick,
Although there is no guideline how late is too late, I don't think March will be too late. So I will agree that getting another scan in March is reasonable.
Best,
Qing
So that's what I'm going to do. Do I want to punt this down the road? Of course not. Is it the best option? At this time, it is. I am convinced of that.
The main reason it got to this point is because, after further review, Dr. Li and Dr. Anderson were actually on the same page. This is because Dr. Advani's agreement with Dr. Li was not actually agreement with Dr. Li:
I spoke with Dr. Advani last week and she said that she would agree with me on doing more treatment. We agreed on the following:
If the restaging PET 6-8 weeks post radiation is still residue positive, then we definitely need to do more systemic chemo with introthecal prophylaxis. If it is negative, then it would be OK to do introthecal only with minimal 6 doses.
This is agreement only in the sense that Dr. Li backed away from the "do more treatment now" position. And Dr. Anderson's position:
If I had the only vote, I would say to just watch, see what the next PET-CT shows.
Without context (and yes, context is everything), these positions are almost precisely the same. Add in Dr. Al-Katib and Dr. Zelentez (who explicitly recommended getting a March PET scan then revisiting the issue), and that's five doctors roughly on the same page. Send me to the Middle East.
***
What it came down to was this: I wasn't convinced that additional chemo provided enough of a benefit right now. Simple as that. I had three doctors (plus the HFH tumor board) telling me that. I had one doctor who was on the other side, but who acknowledged that she might be wrong and that it was a borderline case. And you simply do not mess around with chemo. It can kill you. It can disable you. It can do a lot of terrible things. It's a horribly unpleasant and dangerous treatment option that is usually only used when the alternative is death. This is not something you play around with.
But neither is cancer. I know that, and my doctors know that. I wasn't going to solicit any more opinions; we were at the point where nobody was adding anything productive to the discussion. The only reason I got as my opinions as I did was because everybody acknowledged the utter lack of good data on my case. Given that situation, I felt the "consensus" approach was the best way to go. As a lawyer, I know you always think you have a strong case...until somebody else comes along and forces you to reevaluate things. I wanted my doctors put in that situation.
So I went about things strategically: I made sure Dr. Li, Dr. Anderson, and Dr. Al-Katib all spoke with each other. Dr. Anderson went back to the HFH tumor board. Dr. Al-Katib literally went into the library (or probably just his computer) to pull articles on my rare type. Dr. Li spoke with anybody I asked her to speak to. And I used my additional opinions strategically: I wanted one doctor (Dr. Zelentez) to review my records and issue an opinion without speaking to my doctors, and I wanted another doctor (Dr. Advani) to hear what both my doctors had to say.
And after all that, there's nobody telling me that I'm going to die if I get more treatmetn, and there's nobody telling me that I'm going to die if I don't. The doctors think that additional information will make things more clear. I'm cool with that. So that's what we're going to do.
***
For my part, I'm going to enjoy the reprieve, even if it's not over for good. I'm already past the point of accepting that it's never over, so it's no big deal.
But if there's one thing that gives me confidence, it's the way things worked out. I mean, you can't get much better care than the care I received. Cancer is a bundle of uncertainty, but all you can do is try to reduce that uncertainty as much as you can. I still don't know whether doing more treatment, or doing CNS prophylaxis, or doing nothing is the best way to go. But I'm reasonably sure that when 5 doctors tell me some variation of, "wait a few months, get scanned, and we'll go from there," that's the best option.
So at long last, I'm at peace. This isn't over - it's never over, really. But I'm getting closer and closer to having a day where I don't think about cancer once.
I went 9,170 straight days without cancer weighing on my mind. I'm looking forward to the next one.
