Wednesday, February 20, 2013

Coping with Survival

I have become comfortable with the idea of a truncated life.

That I will likely live to 35 but not 40 no longer frightens me as much as it once did.  It's something I've come to terms with.  Call it acceptance, denial or fatigue, as I'm not sure if it's one or the other or maybe all three.  But now I have a new challenge, and part of that challenge is that I feel like an arrogant asshole for calling it a challenge instead of simply reveling in it.  Some of this post is going to sound like fishing so please don't think I'm looking for comfort or reassurances.  I'm just sorting through some strange thoughts (as usual).

So I had that appointment with my doctor a while back, and I apologize to those of you who have been waiting to hear how it went.  Work's been a bit busy as of late, and that must come first. 

It started with Dr. C. entering the office with a man I'd never seen before, also in a white coat.  My mother was sitting beside me and I could feel her tense with confusion, wondering - as was I - if this new man was a specialist come to deliver some bad news.  Maybe to introduce himself, as things had gone so wildly out of control that Dr. C. could no longer handle them.  Dr. C. seemed to pick up on that quickly and interrupted himself to introduce the man as a student come to observe, and then assured me that my MRIs were "perfect."  He then ran me through the usual neurological tests, and again expressed true confusion as to how I could be doing so well.  My balance and coordination are flawless.

And then he said something that I kind of wish I didn't hear.  He said that I might be done with cancer.  Forever.

You see, contrary to popular belief, when a cancer survivor is in remission, it does not become more likely that the cancer will start growing again over time.  It becomes less likely.  I've gone a year and a half without any signs of growth or recurrence of symptoms, and he sees no reason to believe that is going to change.

I don't know how to feel about that.  My mother was overjoyed, of course, and over the next few days I received congratulations from various relatives, but I didn't feel any of that elation myself.  I'm not ready to believe it, even as a possibility.  I've spent so much time coming to terms with my mortality, I'm afraid to believe that I'm actually out of the woods.  I'm afraid that Dr. C. might be wrong, and I don't want to have to fight that battle against despair again.  This productive nihilism of mine works pretty well for me.

I'm quick to say that I am not my disease, but it's still part of me.  Even on the outside chance that I really am cancer free, I'm going to have to get MRIs every four months, either for the rest of my life or until they come up with a way to be absolutely sure.  It sounds sick, but I wonder if part of me even likes that I have cancer.  It gives me a sort of authority, or even immunity.  I've fought it, and people recognize that and tell me how much they admire my strength.  I get plenty of e-mails from people seeking guidance or a sympathetic ear.

And let's get one thing straight, I've spoken to people who started out in a better place than I, but have ended up in a worse place.   We didn't catch my cancer early.  It wasn't in a "good" place.  It wasn't small or well-defined.  It even looked like it was becoming more aggressive.  So here comes that question of "why me," once again.  Not, "why did I get this," but, "why might I have beaten it when others didn't?"  I guess it all comes back to the wise words of Woody Roseland.  There is no why, when it comes to cancer.  I'm not doing well because I fought harder, or because of some strength of character that I have and others lack.  I'm doing well because cancer is random.  It's like a tornado.  A tornado spares some people.  Others, it kills.  There are things you can do to improve your odds but it's ultimately up to chance.  For the time being, I've been very lucky and I kind of feel like an ass by offering advice to those who haven't. 

But people keep contacting me, including a friend I've known for years who was recently diagnosed.  If they find my counsel valuable, I certainly won't turn them away. 

On that note, I want to remind you, dear reader, that I keep my e-mail on this page for a reason.  Please don't hesitate to contact me if you'd like, even if you just want to vent or chat.  I do get caught up in work from time to time but I'll always write back eventually and I make it a point to respond to introductory e-mails ASAP. 

Speaking of which, I have two links for you all today.  The first comes from Cameron Von St. James, the husband of mesothelioma survivor Heather Von St. James.  I've linked to his post on anger, which I found particularly insightful.  Cameron provides a perspective that I cannot – that of a husband, father and caregiver – and so when he approached me about linking to his blog, I had no reservations about helping to spread the word. I found it interesting and hope that you'll all take a look.

The second comes from a fellow brain cancer patient, Ozman, who was recently diagnosed.  I suggested he start a blog and he took that recommendation to heart.  I suppose I should let him take it from there.

As for me, I guess I'll just keep doing what I've been doing.  It's worked out pretty OK so far, and as far as predicaments go, this one's way better than the previous one.  Fellow fighters, if presented with the opportunity to (possibly) not have cancer, I strenuously encourage you to take it.


  1. Your post is amazing. I had symptoms one year ago, did radiation and my prognosis is "good" it has been a struggle emotionally, more than it has been physically. I often wonder why? It's nice to know others feel the same way. Be thankful and live.

    1. You too, Doctor. Thank you for your feedback.

      Sometimes I read pre-modern accounts of cancers, when they called tumors "stones" and the like, and didn't really understand what was going on other than that they didn't know how to treat it and it was usually fatal. It makes me wonder if we were meant to know that we're sick. Maybe we aren't equipped to deal with the knowledge. One of my ancestors is recorded as having died "suddenly," of an unknown cause. I've always wondered if maybe I've inherited his genetic legacy.

  2. Hello there. When he said that you may be over it forever it means forever and ever?? Or 5 10 years? Wow! How can he say such thing! And another thing....have you talked with your doctor if it comes back with what are you going to fight it?I am wondering because you had grade 2 and most doctors dont recommend chemo and radiation or am I wrong. I wish you to stay like this until your grandchildren go to college :p your story is inspiring

    1. He seems to mean forever and ever and ever, which is why I find it so hard to swallow. No one ever suggested that as a possibility.

      As for treatments, every cancer is different. I was given a choice as to what I wanted to do post-surgery (we all agreed the mass had to come out). At the time they weren't entirely sure if radiation and chemo are mutually beneficial but they wanted to do radiation and told me if I wanted to try the one-two punch with chemo, that would be my only chance. So that's what we did, and we got great results. Just the other day I read an article about the technique in CURE magazine, so I think we made the right choice.

      Should my cancer come back, we'll discuss our options again. Surgery's still on the table, though I'd really like to avoid it. We could do radiation again, too, though my radio-oncologist said it would likely be a different kind. I wasn't clear on the details. If anything changes they'll likely put me on chemo again though that alone is unlikely to kill the cancer so much as stabilize it.

      Thank you for your well wishes, and thanks for reading.

  3. This is by far the most honest and intelligent thing I have read in th seven months since my husband was diagnosed with GBM. You're a force of nature, and I am so, so, so impressed.

    1. Thank you very much. I wasn't sure how this post would go over so I'm glad to hear you appreciated it. I wish you and your husband luck in your fight.