[
This was going to be a bit in yesterday's post, but it got too long so I decided to make it a separate post. It's probably the closest thing to a "diary entry" that I've written. Also, I'm completely bipolar about this issue these days, and this post reflects that. My mood is very inconsistent.]
It's sort of like this. Except not at all.
The Decision over whether I'm going to do more treatment after the New Year is still pending. I still get a lot of questions about this. Most everything you need to know is contained in
this post.
Honestly, this thing hanging over my head is really sapping the life out of me. I'm honestly not that excited to finish up treatment because every time I do get excited about that, my mind invariably wanders to the possibility that I'll be in the hospital until March. Every day I feel better and better and I start to think about going back to feeling worse and worse.
To clear up some confusion: The decision about whether or not to do more treatment is mine and mine alone, and there is absolutely no right answer. I will not be "told" whether or not to do more treatment. No doctor will give me anything that resembles a definitive answer. I will only get recommendations from doctors about what they think. And so far, a couple doctors think I'm fine and that doing more treatment is too dangerous, and a couple doctors think I'm not fine and that not doing more treatment is too dangerous.
Which just leads to a situation where I could potentially second-guess myself forever. If I don't do more treatment and I relapse, I'll beat myself up for the rest of my life. If I do more treatment and don't relapse, I'll always wonder if I just shaved years off my life for no particular reason. This "decision" crap is quickly becoming the worst part of this entire process. I can handle whatever I have to do to beat this thing. I'm having a more difficult time handling having absolutely no clue what I should do but having my life depend on it.
I just can't get over the fact that I screwed this up. I thought I did everything right. We did all the tests, waited, took our time - even with an insanely aggressive tumor in my body, we took our time to get it right. Everything was debated, everything was discussed, we got a second opinion, which led to more debate and more discussion. My doctors conversed, explained everything to me, and gave me the reasons for their opinion. And then we began treatment.
And over two months later I find out that all of that might have been completely wrong. Wrong diagnosis. Wrong treatment. And then came the dreaded term, "clinical judgment." And the doctors conversed and discussed. Sent my tissue out for more analysis. And then I went to another hospital for yet another opinion. And soon enough, I had three different diagnoses and three different opinions on treatment.
And then nothing. And nothing. And more nothing. Wait for this. Wait for that. Then "this" and "that" happen, and surprise, everyone still has the same opinion. Dr. Al-Katib shows me a journal article and says, "Look, two of the four cases were treated with CHOP, and they had good outcomes. You should be fine with R-CHOP." Dr. Li looks at the same article and says, "Look, two of the four cases were treated with more intense regimens, and they had good outcomes. You should do more treatment." Henry Ford looks at my tissue and says I have DLBCL (Diffuse Large B-Cell Lymphoma). U-M looks at my tissue and says I have DLBCL with features of Burkitt's. The NIH looks at my tissue and says I have a subset of Burkitt's that might be able to be treated like DLBCL. Henry Ford looks at my tissue again and says, "We respect the NIH, but this is DLBCL."
And all the while, people are congratulating me on the end of treatment. I'm preparing to move to DC. People ask me when I'm moving, and I have to give the awkward answer, "I hope to move back just after the New Year. But I might not move and just go into the hospital instead." And if I do move, I'll just spend most of 2011 terrified of relapsing, because I've been told that if I don't do more treatment, the chances of me relapsing are good. But I've also been told that that statement is bogus, and if I do more treatment, the chances of having complications increase. It's a little like choosing if you want to be shot or stabbed, but with uncertain probabilities attached to both options.
You can say, "Come on Nick. You didn't screw anything up. You did everything right. Sometimes, these things just happen." And you'd probably be right. But really, what does it matter? It doesn't change the way I feel. It doesn't affect the decision I have to make. It doesn't change the fact that I've gone from "cancer patient," which I can 100% handle, to "one in a billion cancer patient (quite literally) with rare type of cancer who is facing the possibility of going chemo-radiation-chemo (which I assume is rare)." I can handle winning the world's worst lottery at 100,000 to 1 odds. I have a tougher time winning the 1,000,000,000 to 1 lottery without wondering if there's something out there that is out to get me.
And that's all I do now. I pack up my stuff to move it to DC and wonder when I'm going to move myself to DC. My friends ask me if I'm having a going away party; I tell them I don't want to jinx anything. I watch my hair grow back and wonder if it's just going to fall out all over again. I work out and wonder if it's even worth it because I'm just going to be bedridden for another couple months. I go out with friends and wonder how much long I'll be able to do that. I put down payments on things expecting to have a steady paycheck in a little over a month, but staring down the prospect of a financial disaster if that doesn't happen (or a second financial disaster if I start work on time and then relapse). My enthusiasm is tempered, my statements are qualified, and I'm honestly terrified of jinxing things to the point where I refuse to give in to demands to have a party to celebrate the end of my treatment.
For all intents and purposes, I just throttled cancer. I felt pretty damn good while doing it, and I feel great just three weeks out of chemo. I passed the bar with a cancerous tumor under my arm. Emily and I found an apartment we love for a pretty good price in DC. I found out that I have the best family and friends on earth. And all the while I've maintained the internet's most popular cancer blog (I mean, it's gotta be, right?). And I'm not really excited about
any of that. Because I feel like I'm staring down the barrel of a gun and playing a three-month game of Russian Roulette. This. Is. Not. Fun.
***
I try to keep things in perspective though. It's tough. It really is. But I've always looked at everything else rationally and logically, and doesn't make any sense to stop doing that now. I've always said that I'm not going to "think positive" about things unless positivity is warranted by the circumstances. Well I'm not going to "think negative" about things either. You have to take the bad with the good, and the good with the bad.
So I try, really hard, to remember the good stuff in all this. And honestly, it's not that easy to remember the good. I just listed a bunch of things two paragraphs ago. Basically, as a cancer patient, you ask for two things: good prognosis, and good treatment.
I have a good prognosis. No doctors disagree with that assessment. Even though nobody can agree on my diagnosis or particular type of lymphoma, the options are "curable" or "very curable." Everyone says this is something I can put behind me. If I had a different type of cancer, I might not have a difficult decision to make, since I might be a dead man. You really can't understate the significance of this.
And then there's treatment. You know those weight loss commercials that tell you about a person who lost 200 pounds in 3 days and then tell you, "results not typical"? Well that was my experience with chemo: results not typical. (Not the weight loss). The more I talk with my doctors and nurses and other people who have had to deal with cancer, the more I realize that, for whatever reason, my body tolerated chemotherapy better than virtually anybody else who goes through that type of treatment. During our last meeting, Dr. Anderson used the phrase "breezed through" to describe my chemo experience. He mentioned how "everybody around here has been talking about how well you tolerated treatment." And so on. It's not to brag (except that I am awesome), but rather to highlight how well things have gone. Relatively, of course.
And the cancer itself got crushed, at least according to the PET scans. The first PET scan I had on August 5th was bad news. That was two days
after had an 8cm tumor removed, and there was still a tremendous amount of activity on the scan. And I didn't begin treatment until August 23rd, which meant that things were probably a little more intense by that point. And by scan #2 on September 30th, the thing was 95% dead. I didn't get sick, didn't have any serious complications, and felt good the majority of the time. You can't really ask for a better course of treatment.
And the other stuff. The intangibles, if you will, like "the rest of my life." I'm not sure what I have to complain about there. No regrets about my past. No complains about my future. Other than the cancer, life is good ("Aside from that, Mrs. Lincoln, how was the play?").
***
Things will get better in time. Probably. Most likely. I think. Or at least I'll try to believe that. I have a reason to believe that. I'll get it figured out in time, and then I'll move on. And if more treatment is the best option, then I'll do that. I'm just having a very difficult time dealing with the uncertainty and the pace at which this is all (not) being resolved. And the lack of information. And the lack of a right answer. And the potential for second-guessing.
But I can't really change all that. I can't change the situation or turn in the cards I've been dealt. There's not much I can do about things. I just have to wait, make a decision, and live with it. I guess I can kick and scream and look over my shoulder all I want, but like many other things I want to do, it won't do much good in the midst of all this.
For now, I remain frustrated. It is what it is. It's not what I want, but none of this is. The ability to call the shots went away a long time ago. Cancer takes that away from you, along with many other things. And I guess you can focus on that. But I'm going to try to think about what it hasn't taken. At least for the moment.