I’ve been asked…oh, more than a few “health” questions at the roughly 27 weddings I’ve attended since August. One friend in particular demanded a health update of sorts, and I figured that was a good idea. Sort of a “state of the Nick” address or something. Because shit got real there for a bit. So I think it’s worth reviewing what happened, where I am now, and what lies before me in the future.
Currently, I am in remission. That’s good news. I have been in remission since November or December of 2010, depending on who you ask and what test you believe. “Partial remission” means that cancer signs/symptoms have been reduced. “Complete remission” means that cancer signs/symptoms have disappeared. I have been in complete remission since December.
BUT, “remission” is not “cured.” There’s a third level of sorts that we all want me to get to, that I hope to get to, and that my doctors think I can get to, and that is “cured.” “Clinically cured” is the technical term I guess. Unfortunately, it’s going to take a while to determine whether or not I am clinically cured of cancer. It’s not terribly difficult to get my particular type of cancer into remission. It’s a little more difficult to keep it there. It’s easier when, like I have, you catch the cancer early. But I’m still deep within the “under the gun” period.
Speaking of that period, I mean this: The particular type of cancer I have/had tends to recur quickly if it’s going to recur. Dr. Li put the danger zone at 5-12 months after remission – a danger zone I would begin to exit around December 2011. Dr. Ambinder says if this junk is to return, it does so almost always within 2 years after remission. Dr. Al-Katib and the artist formerly known as Dr. Anderson have a little longer time frame, but my whole deal has been so screwed up, I’m not sure of their particular basis (i.e., what particular type of lymphoma they were referring to).
Speaking of the “type” of lymphoma: That’s really still up for debate. The National Cancer Institute still has parts of my tumor (I believe) because it's really weird and they want to keep it. Hopkins is now referring to it as all-out Burkitt’s lymphoma; other doctors refer to it as a hybrid, combination, Burkitt’s-like, or aggressive DLBCL (diffuse large b-cell lymphoma). It’s still up for debate whether or not this classification makes any difference. One thing you learn going through all this crap: many, many smart people will disagree on things. There isn’t always a “right” answer, as much as you would like one.
So the other thing that is also up for debate: whether or not I received the “right” treatment. We’ll never really know that. We can’t even say whether or not I received the “optimal” treatment. U-M and Hopkins probably would have treated me differently, with more aggressive drugs and in-patient chemo. Dr. Al-Katib and Dr. Anderson disagreed with that; Dr. Ambinder called my treatment “reasonable” and thinks everything looks good after the intrathecal chemo, which half-murdered me, which Dr. Anderson disagreed with, and which Ambinder believes cut my chances of relapse significantly. On this stuff, we’ll never know. If I’m all good from here on out, then Dr. Anderson made a gutsy, damn good call, curing me of cancer while sparing me a bunch of collateral damage from aggressive chemo. Hell…half the battle in this is accepting the uncertainty.
Right now: I’m in remission. My May checkup went well; Dr. Ambinder felt comfortable bumping my checkups to 6 month intervals. I got checked out in September anyway – things seemed fine then. My next major checkup is in November. If things are good then, that’s a really good sign. Until then, it’s largely the waiting game.
But until then, I continue to recover. Chemotherapy takes a lot out of you. It tears apart virtually every part of your body. And radiation doesn’t help things. It takes a while to recover from all that. I feel like I’m pretty much there, but I definitely have some aches and pains from the whole ordeal. And after all that, you become hyper-aware of every ache and pain everywhere on your body. You notice absolutely everything and immediately wonder if it’s something or nothing. It’s probably nothing, over course, but the post-cancer era is filled with those “what if it isn’t-s.” It’s a buttload of fun.
Alas, I just get on with things these days. I think about all this more than I would like and more than I thought I would, but it never causes me serious trouble. It’s not like this stuff ever eats me up. I’ve learned to coexist. I imagine there will be a time when this stuff eats up less of my available mental space. That time is still in the future. But it is closer than it has ever been.
Speaking of treatment…what exactly did I go through: The entire “cancer hat trick” (I made that term up but I’m trademarking it): Surgery, chemotherapy, and radiation. Then we played overtime with some intrathecal chemotherapy. What did all this stuff do? Well, hopefully it killed the cancer. But more specifically:
The surgery removed the original tumor. This probably wasn’t necessary – the surgery I had was actually an excisional biopsy to obtain more tissue to test. But it didn’t hurt either. Chances were the chemo would have shrunk/dissolved the tumor anyway.
The chemo was primarily targeted at killing the microscopic disease – the little cells floating around other areas of my body. Chemo will certainly do some damage in the “macroscopic” disease are – my left axilla – but it was mainly targeted at the little bad guys elsewhere. This was the point of the six cycles – increase the chance of eliminating any residual disease. I underwent six cycles of what they call “systemic” chemo from August to November last year.
Then it was on to a month of radiation. Radiation is geared toward eliminating the macroscopic disease – the actual tumor site and the affected lymph nodes. Radiation is a bit more risky, and it’s usually only performed on larger tumors (different hospitals have different standards – U-M was on the fence about me; Dr. Anderson and Dr. Kim thought the benefits greatly outweighed the risk). Radiation was far more tolerable than chemo, although it left my upper left chest/underarm region a veritable dead zone.
Then we went through a whole fun period where a bunch of doctors and I tried to figure out if I needed any additional treatment. The issue was this: My cancerous cells had a weird genetic mutation that made the cells act, as Dr. Al-Katib put it, crazy. “Crazy” in the sense that they are extremely aggressive and active. This helps when you have treatments that target aggressive cells. This is not so good if those cells migrate somewhere where the drugs can’t get them.
That “somewhere” would be the central nervous system. The chemo drugs I received did not penetrate the blood-brain barrier. The obvious problem: if the cancer cells got there first, I could have problems down the road.
The dispute was over the chances this had happened. Dr. Anderson thought the answer was an almost definite no – I was early stage, in good health otherwise, the tumor was a ways away from Waldeyer’s ring, and so on. Other doctors weren’t so sure – or at least felt the benefits of additional treatment would outweigh the risks.
So I punted the decision until my three month checkup in early March. I got there, Dr. Ambinder was gung-ho about doing intrathecal chemo, so that’s what happened.
And happen it did. Intrathecal chemo is like a glorified spinal tap. A nurse jams a needle into your spinal column, collects fluid for testing, and, while she’s at it, injects chemotherapy drugs directly into the spinal column. The main purpose is to check the spinal fluid for any cancerous cells. The thought is, if they’re going to stick a needle in your spine, why not fire some drugs in there while they’re at it?
That seemed simple enough, but my body disagreed. As is common with spinal taps (or epidurals), my spinal fluid continued leaking after the original puncture. This causes changing intracranial pressure and, in turn, headaches. As is not common, my bout with these headaches was absolutely horrific. For some reason, things just did not heal right. I was left with positional headaches – headaches that go away when you lay down, come right back when you stand up – for weeks. I couldn’t stand, so I couldn’t eat much. Sometimes, the pain got so bad that it triggered nausea. Then I would try to take a pain pill, but I was nauseous and had an empty stomach. This triggered even more nausea. I’d try to get a nausea pill down, but that was too much and the whole concoction would come back up in a blithering bubbling bile. Then we had all sorts of dehydration issues, and that’s what led to two ER trips and hospitalization in a week. Fun times.
But after that, things started getting better. Dr. Ambinder decided to stop the treatments, in part because all my other signs were looking good and they had found no cancerous cells in my spinal fluid, and in part because the treatments were becoming intolerable. I slowly began to recover. I got scanned again in late May. The scan showed shrinking lymph nodes (always a good sign), but my blood work was a little out of wack. Subsequent blood work in early September showed much better counts. That’s where we stand now.
So where do we go from here? Hopefully nowhere. As in, no news is always good news when it comes to cancer. I’m up for another checkup in November. I’m anxious to get there, largely because the general consensus is that the type of cancer I had, being aggressive and all, tends to recur quickly if it’s going to recur. I’m right near the middle of the danger zone now; shortly, that danger will begin to wane.
So that’s my main goal right now: Don’t screw anything up. I’m obviously quite uneasy – I imagine all cancer patients are in the early-remission era. I’ve said this before: When you’re going through treatment, that’s your main focus, day in and day out. But when you’re done with all that, it’s hard to just go on living life as you did before this all happened. Damn near impossible. And you take nothing for granted.
So for now, I sit, hope, watch, wait, pray, whatever. The November checkup – technically the “one year” checkup – will be significant. But I won’t make it out to be anything bigger than it is. Cancer is a humbling experience. I’ll continue to treat it as such.