Why Not Take All of Me?

Originally, I had plans to write the most brilliant, beautiful, celebration blog you’ve ever seen, almost unreal it was so optimistic. Sound like me recently? I’ve noticed my own tendency to shoot directly towards the positive, the need to head in that direction. As a result, what I’ve given off to people has been this radiating positivity. “Chemo? Couldn’t be better! Cancer? Angel Food Cake, baby.” I’ve been procrastinating writing this email, mostly because while the news I want to share is fantastic, it isn’t all.

I met with my doctors on Tuesday. Without skipping a step, Birgitta asked how soon before I wanted my central line (the rasta dread that hangs out of my chest) to come out. “If you’d like, we can take it out before your last chemo treatments for this round.” There it was. Smile, baby, YOU ARE HEALED. Without saying a word, she had told me that I was moving onto maintenance and could now take out this lanky shunt. I lit up. Dr. Glenn came in and I lit up even more. We started talking about what maintenance would look like. Beginning in just a few weeks, my chemo will be scaled back to one treatment a month (I’m currently getting four a week) plus two pills a day. The belief is that, with a few months of true rest and recovery (I don’t get to jump immediately back into my gig with Cirque du Soleil) my energy and strength should begin to increase pretty quickly. They’re unsure, but believe it may be possible in a year or so that I could ‘appear’ fully recovered, even though maintenance will last until around November 2009.

Then came the news I’m less apt to share. One of my questions was about travel. Of course it’s unrealistic for me to travel right now. That’s never been a question. Not only is my body too weak and compromised, but plain and simple, I need to be close to the hospital at all times. However, with chemo being spaced apart less frequently now than it was before, I asked if it was okay for me to start contemplating travel in the near future: a friend invited me to Mexico for a week in May, I’d love to visit some friends in Europe this summer, I’m dying to get back to Africa as soon as is humanly possible. The answer was straightforward and honest: No. Travel outside the United States is not a possibility until maintenance is finished. It’s a matter of my doctors being able to find me if they need to, or me being able to find them. It’s a question of my immune system remaining compromised throughout this entire deal, including maintenance. Any bug, any bout with food poisoning or compromised hygiene, any major virus or parasite could cause serious damage for me, especially not being somewhere where I could get proper treatment quickly. Perhaps down-the-road we can negotiate and make some small exceptions (nothing with chemo is ever set in stone), but anywhere where, let’s say the water might be slightly questionable, must be ruled out.

This news came hard. From the moment I first stepped into a hospital bed, my memories of past travels, and my dreams of future ones have sustained me. I haven’t had much energy over the last few days to celebrate, mostly because I’ve been sitting with this news and trying to digest it. I wasn’t going to share it. And then I remembered a friend, Eric, who came over the other night. We were talking and he said to me, “I’ll be honest, man, if it were me with Cancer right now, I’d be pissed off! Severely pissed off.” I told him about finding the ‘friendly’ in cancer and realizing all it’s given me. What I forgot to tell Eric was that, yes, in fact, it pisses me off too!! I am angry. I am very frustrated, especially right now. And I feel peaceful and calm about the future. In that beautiful human way, I am overjoyed at knowing that I’m in the last stretch of the intense rounds. I am also angry at the world for giving me, of all people, these specific parameters about what I can and can’t do. I’ll admit, it feels a little unfair. Ok, a lot. See, I’m even being more honest with myself as I go along!

Thank you all for trusting that I am healed. I was hospitalized again on Thursday due to more chemo pain. This time around, I feel very calm and at peace. I keep telling my pancreas, “you’re healed, man. You do whatever you need to do to get better, but we’re all here supporting you.” And you have been, every step of the way. You rock stars.

Isobel Knows

Last week was a tough one. “Yeah sweetie, you have cancer. You’re gonna have to be a little more specific.” Alright, last week was particularly tough. It seems each time I go back into the hospital for chemo, it takes longer and longer to get off the couch again and begin trying to recover before the next week’s dose. Last week, the reprieve never came. I spent the entire week on the couch, in and out of pain that radiated through my back, shoulders, stomach, belly, pancreas, side and chest. A week crept into eight days and by Thursday, we were back to asking the question, “is it time to go to the hospital yet?” In the past, a hospital visit has happened nearly any time I’ve experienced significant pain. As it’s become more and more common, the question has shifted: ‘at what degree of pain do we go to the hospital?”

At the hospital, they have morphine in IV form, which means it’s a very potent amount of pain killer that can be given quickly. In the case of a sudden onslaught of pain, the sooner relief comes the better, far better. But for the most part, there’s very little they can do up at the hospital, other than pain control. They’ll want to run tests, inevitably most of them won’t pan out---more likely than not it’s ‘chemo pain,’ not incredibly complex. It’s the human body being used as a punching bag and oh! It doesn’t like that very much. So I’ve begun exercising greater caution before proceeding to the hospital, understanding better the help they can and can’t provide. I spent about three days at home, monitoring the pain and controlling it through meditation, relaxation and breathing. My body responded beautifully and for the most part, I was able to keep myself relatively calm.

On Friday, I decided to check myself into the hospital. After a certain amount of time, I worry that by not eliminating the pain with drugs, (ie trying to let it go away more naturally) I’m not able to heal and rest properly. I was admitted to the hospital and started on morphine, the highest dose that could legally be administered (I tend to have a high pain tolerance…) It took a few days for my body to fully calm down. I was pretty loopy. I’m sure you all visited. I’m sure you all brought flowers and chocolate. I’m sure. I don’t remember any of you people. But you’re beautiful.

The doctors evaluated the situation: mild pancreatitis brought on by general chemo irritation. Again with the pancreatitis. I was terrified when I heard that it was pancreatitis. It was as if, as Dorothy ballooned back to Kansas, the Wicked Witch rocketed up in a puff of black smoke and popped her one. I didn’t want to admit how scared it made me to consider dealing with pancreatitis again, or not being able to eat or drink or exercise. I’ve been so positive, and it was hard to admit that with this comes a great deal of anxiety about a very uncertain future. But it doesn’t feel uncertain. That’s the funny thing. It’s alright. Right now. As is. I know that. I made that my prayer all weekend long in the hospital room and focused on dancing and waiting for the signal from the universe that of course, it’s okay. The nurse who had been cleaning my room for several days, Isobel, was swaying around my room with the broom, humming to herself. Everyone in the hospital is incredibly cordial to one another, part of what I like about it. Isobel is particularly friendly. The entire upper half of her face lifts when she smiles. She smiled at me, whisked herself into the bathroom, swished around cleaning, swished back out and smiled at me again. She looked at me as though I were a small, undiscovered creature that had hatched out of an egg, and she said something in Spanish. Then she approached me and rested her hand on my forehead. “Eh…you…eh going…bettah.” And just as quickly, she swished out of the room.

Well there you have it. You don’t argue with Isobel. She knows.