Monday, November 30, 2009

5 months… what can I say? I remember researching stem cell transplants and Hodgkins disease online, reading old blogs written by people over the days weeks or months leading up to their new treatment- the humor in the face of physical pain and repeated disappointments, the hope in this new and often final treatment. Then the time comes and the blogs stop. What happened? Did it work? If not then what? Did you get sicker? Did you die? How do you prepare yourself for such a thing? Please tell me, I need to know!
Well, in some way maybe now I know. Perhaps for many people it just takes too much energy. It does, it takes a lot. Not just physically but from whatever it is we call our soul. Maybe some die. Maybe some have such good news they don't want to jinx it. Or maybe, as in my case, the news isn't so good, and the future not so clear cut, and each day is another day you just don't want to talk about it anymore. Shock? So, yes, after all this time, thats the news I have for you. It didn't work.
Things were hopeful in the hospital. Physically I've proven to be a robust character. While the misery of high doses of the most toxic chemotherapy available and the loneliness of three weeks of isolation in the hospital are not forgettable, I managed to suffer little in comparison to many of the patients. Except for a constellation of purple scars on my back, anemia, and a general lack of fitness compared to before it all began I now bare few outward signs of what I've been through, and I overcame the rest that I left the hospital with quickly.
I was completely hairless. Forbidden to leave the house without a respirator. Forbidden to walk on dirt, contact soil or plants. Proud to be able to walk around the block. Forced to live in a state of hyper-sanitation. Driven to the hospital everyday for tests and transfusions. Everything had to be cooked and boiled. Dependent on the best of friends. But none of that lasted as long as they said it would need to. Imprisonment for 6 months dwindled to a few weeks and I was walking all the way to Glen Canyon without a respirator and sneaking onto the trails amongst the willows and rocks. All of it seemed miraculous, and it was.
So, in mid-August I had a PET scan. I had the beginnings of nose hair, eyebrows and eyelashes, stubble on my head. My doctors thought I looked great. I was walking a few miles a day. Being around numbers of people still seemed forbidding, but the proximity of BART was alluring and I was ready. But you already know the answer now. It didn't work. Instead of disappearing there was a new focus of tumor activity, the old tumor had become more active and it appeared that the cancer had spread into the adjacent lymph nodes. It had gotten worse. The irony is that it has always been the treatments Im recovering from. Except for that week of high fevers and night sweats a year and a half ago, my cancer hasn't made me sick. Its killing me invisibly, with stealth. And sometimes I don't want to write about it.
Almost immediately I began radiation. It had always been planned. Radiation would have been used to clean up the area of the tumor because of its size. Now it had become a vital last effort to kill the cancer. 6 weeks, every day, I went to the clinic, lay down and had a particle accelerator aimed at my chest, 360 degrees. I had a sore throat. I have permanently lost the hair in an inconveniently large and unnatural pattern on my chest. I look like I've never been sick. I run a few miles every day. I hike. I eat what I want. I started to work again, part time. This Thursday, December 3rd, I have my next PET scan.
Now Im living what I call my 19th century life, only a bit less romantic and a lot less wealthy than most Jane Austen characters. But I have a lot of time to sit and think about the world and my place in it. Inside my chest is a broken heart and a thriving disease, a little heaviness both physical, emotional and spiritual. I've read and watched so many movies and t.v. shows that now I often just sit and stare and think and watch on my down time, as I imagine many of those 19th century characters did in a much slower world, with so much more time to themselves.
So, what future do I plan for now that any future is in doubt? How do I continue to dream, fantasize about the different possibilities of my in a little house in the country…traveling abroad? Is this why I've been drawn to the elderly lately? I watch them and wonder how they feel about the proximity of death. Are they waiting? Am I waiting? In the botanical garden, after a plant sale, I followed an old woman whose fingers danced along the uneven top of a fence as they scattered the rain drops recently collected there. Her walk seemed to take on a skip and hop to match the freshness of the water and the thriving garden. And then on the train one day an elderly woman got on all scowls and confrontation. She was coarse and bitter to anyone close enough to ask where she should get off and why the hell wasn't this thing easier and isn't that seat for her. Then as the train left the tunnel she settled down to the view outside her window, the setting sun, the fog lingering behind the skyline of hills and buildings, and with distracted pleasure she smiled and stared like a child. So much to be bitter about, but the world still has something visceral to offer. This mixture of bitterness and joy reminds me of my own mixture of robust appearances and inner sickness.
What do I have now? The worst of the symptoms have faded and Im left with…? Was it easier to live with, be motivated by, the obvious physical symptoms from the treatment? My apparent health is chimeric. What happened 5 months ago seems like a sad and horrible dream, a dream that may return all too soon. I don't want to die. I don't want to die, but I don't want to live life dying either. I don't want to sit in a hospital while the act of living slowly dissipates. I don't want to lie in a bed numbed by drugs drifting in and out of sleep, punctuated by dwindling visitors, until I don't wake up from that dream. I want to choose to live until I cannot. I want to be in control. I want to decide when its over. I'm not in control. I want to live, but I don't want to live dying.
I was listening to Jesus Christ Superstar the other day, again. I love that thing. I guess it's that 70's humanism I was raised with. Now, I'm not religious. I'm most assuredly and unabashedly an atheist. But I understand now more than ever the human brain's struggle to grasp mortality. Being such aware creatures is both a blessing, the secret to our success, and a curse. The way I see it the lesson of the story of Jesus comes from our attempt to reconcile mortality with life; with our ability to be selfless, kind, thoughtful, generous and at once selfish, callous, destructive, murderous. How do we continue knowing all this, and that in the end we will die? We create a martyr, an afterlife, a reason, a purpose, an explanation for the unexplainable. Some things in life can't be explained, can't be understood. No matter how we try
"…now I'm sad and tired."
And Im angry and I hate. I rage. I crack open and sob. I'm remote, sad, lonely and bitter. And yet there are songs to be sung, the sun sets in glorious ways and the trees are beautiful and so many lovely things will bloom this spring.