Is This It?

Since learning the good news about my MRI results, I've had some strange emotions - maybe a bit of guilt mixed with fear that the treatment wasn't aggressive enough. I feel like I got off too easy - ok, all those appointments and the talk of amputation back in May did suck, but I ended up with just a few surgeries and radiation. I didn't have chemo, I didn't lose my hair, I didn't lose my arm. My arm's here - I'm here. Minus some scarring, a hand that doesn't work quite right (I've realized recently that buttons are difficult as well), and an itchy arm, I'm not much the worse for wear. There's this feeling that I didn't do my time.

This might sound crazy to many people - why not just be happy and rejoice that I'm well, and that I didn't have to go through worse treatments to get here? I think to understand, you have to know a bit about leukemia and leukemia treatment a bit (sorry if I'm neglecting other cancers and their treatment, I just don't know them as well).

Chemotherapy often involves drugs that are extremely toxic to normal, healthy cells in addition to the cancer cells. Because they target fast-growing cells, the drugs especially affect the lining of your stomach and your hair cells (which is why you lose your hair). When I received my first dose of chemo back in 1989, the nurse who came in to deliver it wore a yellow haz-mat suit (ok, I'm sure that's not what the medical establishment calls it). It took just moments for the nausea to start - and I don't think it stopped until the chemo stopped a week later. After that came two weeks of the chemo effects - losing my hair, low blood counts, fever, etc. I lost 12 pounds in three weeks.

The idea for the bone marrow transplant was born out of the frustration that higher doses of chemo couldn't be given to kill all the leukemia cells, as they would kill all the bone marrow cells and be fatal. If some of the bone marrow could be extracted, not exposed to chemo, then given back to the patient after the final chemo dose, these otherwise fatal doses could be administered.

I was happy to have the transplant. My alternative was "maintenance chemo:" pills and a weekly shot for three years, accompanied by annual doses of stronger IV chemo. The weekly shots made me sick, and the annual chemo would make me lose my hair each time. I was entering my senior year of high school, and I couldn't imagine the next three years of college with annual hair loss and spending Friday evenings throwing up, recovering the rest of the weekend. I would rather get the higher doses, and have it all done in a matter of weeks. And the transplant worked!

But you can maybe now imagine why I associate cancer treatment with horrific experience. While I really sailed through chemo and transplant - remission after one round of chemo, no relapses, no life-threatening infections - and have forgotten much of it thanks to drugs and the healing power of the mind, it really was awful and not something I'd like to repeat. It also doesn't help that in the years since my transplant and ensuing cure, I've learned of many people who weren't as fortunate as I was. To me, the responsibility of cancer survivorship is to remember that and to live each day mindful of my good fortune (some days I do better than others).

The cancer survivor club - a club you don't really want to join (unless you receive a diagnosis, that is): some of us got here through experiences like mine, others have cancers for which they don't receive treatment and are just monitored. More recently, drugs like Gleevec and Sprycel have made it possible to join the club by not going through the hazing rituals of toxic therapy. While I'm very happy for these medical advances and hope that all cancers will eventually be treated by drugs with minimal side effects, I do feel a twinge of resentment that we all hold the same membership cards - as if I, by virtue of going through full-strength chemo, am different from survivors who received diagnoses just as traumatic and life-changing.

While perhaps this mostly just sounds really f-ed up, I write about these feelings in order to understand myself, to tell myself that it doesn't matter how we all got in the club, what's important is that we're in it. That I didn't have to go through chemo, lose my hair or a limb to be a survivor - that I can lose my guilt and my fear and keep all the joy and the gratitude.