Wednesday, March 27, 2013

The Waiting Game - Fending off the feeling of Helplessness

I think the hardest part for me about being an inpatient is waiting.  I’m the kind of guy who needs to have a lot of irons in the fire to keep me engaged.  Having things to keep my mind occupied and working is not just good for my mental well-being, it’s critical to my overall health. Since I really had no symptoms of acute leukemia, it has been a matter of believing the lab reports were true. Talk about the makings of a conspiracy theory!

Cancer treatment involves patience as much as anything and it’s something I don’t have a lot of when it comes to my own health. Perhaps, it’s because I don’t get sick very often and when I do, I kind of muscle my way through it with minimal medication. That approach to health would have likely killed me with this leukemia, so I’m going to have to re-evaluate the way I take care of myself in the future. My treatment now involves a modicum of faith and a lot of waiting.

My second round of chemotherapy began yesterday.  I got two doses of Cytarabine 12 hours apart. I get today off and the same thing tomorrow and again on day 5 with a break on day 4.  Then, it’s a matter of watching my white counts dip and recover before going home again.  We’ll repeat this cycle every 28 days or until I get the notification that I have a bone marrow donor at which time I’ll be on my way to Seattle. It’s a total waiting game. Of course, once I go to Seattle, it’s another waiting game as my body sheds its damaged immune system and assumes the new one.

The bone marrow transplant is a mystery to me even though it makes sense. Essentially, it works something like this: I get more chemotherapy that decimates my bone marrow and I get really sick. I’m so excited about that as you might imagine. Then I get the stem cells from my donor and we watch and wait for the new cells to take to my system and in a twisted form identity theft, I assume the immune identity of my donor.  I had spoken to another bone marrow patient here at the VA who had been to Seattle and back. His donor was his sister and he commented that when he returned, his blood type was the same as his sister and it showed that he was a post-menopausal woman. He said that he asked the doctor, “So, does this mean I’m going to grow boobs?” Not missing a beat, his sister who was with him said, “Honey, I paid for these. You can’t have ‘em!”

While I don’t have any say on who my donor is, I’ve been told they’re on the look-out for a healthy 20-something. Since many of the donors actually come from Germany for us white bread Caucasians, I’m hoping my donor is a tall blond muscular guy named Hans (or Franz…or Ahnold?). The reality is that nothing on the outside changes and in fact, I’ll have to start over with immunizations like a newborn. In case I do take on a bit of an accent, you’ll know vhy, ja?

As much as treatment is a waiting game, there’s a sense of helplessness about healing.  When my son had heart surgery, that was the overwhelming feeling I had when I would be there in the hospital with him. Seeing him unconscious or in pain from surgery, I just felt unable to do anything other than be there with him. I had to wait just like I have to wait now.

Helplessness is something that doesn’t have to lead to despondence or despair. In fact, as Clint Eastwood said in The Outlaw Josie Wales, “A man’s got to know his limitations.” In a nutshell, we have to know ourselves. Being a patient, I’m learning my own limitations and I’m recognizing some things I just didn’t care about before. It’s partially about age and it’s partially about having to live with leukemia as part of my history. Health isn’t something I can take for granted any longer. But I’m not helpless. Clearly because I’ve taken care of myself, my body has rebounded from the chemo rather quickly to the amazement of my doctors. And it’s what I have to do after I’m done with treatment and returning to my routine. But more than that, there’s the courage to act outside of the helplessness. I came across this quote today and it spoke to me about this helplessness I fall into about having to wait for a number of reasons, but ultimately, it comes down to simply not living a life of fear, helplessness, and regret, but one of courage in again, being ourselves:

The answer to helplessness is not so very complicated. A man can do something for peace without having to jump into politics. Each man has inside him a basic decency and goodness. If he listens to it and acts on it, he is giving a great deal of what it is the world needs most. It is not complicated, but it takes courage. It takes courage for a man to listen to his own goodness and act on it. Do we dare to be ourselves? This is the question that counts.
                - Pablo Casals

So, while I may be in the waiting game, my challenge is to find and be myself in the midst of it all and at the risk of coming across as didactic or preachy, may I challenge you to find that part of you that the world needs most and muster up the courage to act?

Music du jour courtesy of Israel “Iz” Kamakawiwo’ole – What a Wonderful World

Be well, stay strong, and much love to you all J