Thursday, August 28, 2008

Labor Day Q: What do I DO all day?

There are two questions I get quite frequently. The first reflects people's perceptions that I'm done now with this Cancerpalooza (um, no.): So, what are you going to do now? Like I just won the lottery or the Heisman. Well, I'm not going to Disneyland.

Other than knowing that for fact, I'm not exactly sure what I'm "going to do". I was entertaining the idea of heading back to Fletcher to finish off my masters in January, but I actually think that's too soon. Four months from now feels just a little soon to pack up and move to a wintry Boston. (Actually right now, as I sit in front of my neighbor's A/C unit like I'm auditioning for a Sierra Mist commercial, the snow sounds pretty awesome.) Other than postponing school, I'm not really sure what I'm going to do "now" or as my physical, mental, and psychological state comes back to a variant state of normal. Mostly, I think I'm trying to let things just flow, trying to subdue my innate anxiety about not planning and full-on pursuing "the next step", and just rest. As my doctor said today, I need to realize it's a long healing process.

[Note on today's Clinic Visit: Doc says the mouth looks a lot better, but symptoms continue in their unpredictable and inconsistent way, so up the steroids go. Some liver enzyme level is high enough to reinforce the decision to up my steroids again, since GVHD is frequently manifest in the liver. He said if my eyes get yellow, that's jaundice. Sounds gorgeous. Other than that, counts look good.]

Ok, so Question #2, which I feel only slightly better able to answer is: What do you DO all day long? I used to giggle and shrug, finding my daily schedule embarrassingly unproductive, mundane, and difficult to quantify or explain. But then, I really started to think about it and I realize that I'm up to some cool-ass shit! Check it out.

I'm co-producing a documentary. I'm writing a paper about Chinese media censorship. I keep in touch as best I can; you know how much time e-mail absorbs! I am, albeit slowly, starting to apply for gainful employment. I work to provide my counsel with whatever discovery information they request. I'm working on finding an agent with whom to possibly publish a book. I'm exercising every day, including yoga, aikido (well, I will start classes in a couple weeks- eek!), tai chi and walking. [My Bay Area posse: we keep talking about tennis! Let's go make silly fools of ourselves on the court sooooooon.] I cook a lot. I do big organization projects in our apartment. And, I manage my often-confusing schedule of health-related appointments and medications. Then, I also make myself relax and read or relax and watch Heroes or relax and watch CNN or relax and meditate.

This all takes time, people! Plus, is my 2000-piece puzzle going to put itself together?? hmm??

I have these To-Do-Lists that never seem to get done, but yet couldn't really explain what I do all day. It is very hodge-podge and I'm constantly distracted from one thing to another, but I rarely feel bored.

So, when next you wonder what this unemployed sick girl does with her days, now you know. And with this writing exercise, I finally do too.

Tuesday, August 19, 2008

Free at last... Not so fast

Poised at the blocks, ready to commence my Olympic track race toward my old healthy self, I can see me at the finish line, with hair grown, battle scars proudly worn, somehow wiser. But then, just as the gun blasts to mark that it's indeed been 100 days since transplant, I try to lurch forward with all my soul and strength, but find myself as in a dream, fighting to run through invisible molasses. Unseen forces hinder my progress forward, keeping me close to the starting line. All of my fellow runners have left in a blur of color and I thought I'd be with them, now, finally, but this tortoise has a few more lessons in patience to learn.

"Just use your common sense". Those were the words my fabulous doctor told me in clinic last Friday. He meant this in regard to crowds, being around (even slightly possibly sick) people, air travel, parks-- all the no-no's. I love him for this advice. I've hated the seemingly arbitrary nature of the 100-day mark and the 6-month mark and the 1-year mark. I know it's an average of scientific research (though bone marrow transplants are still a very evolving and relatively "new" procedure) rounded way up to to a round number. I took some liberties with Day 100, enjoying the fresh air and eating out by Day 90 or so. I prefer to use common sense when I must balance life with treatment. It's empowering, logical, and the right prescription for my brand of endurance.

As this journey goes on, I'm content to be conservative about what I do. I've come to a kind of peace with the molasses; in fact, it tastes amazing to just let yourself take the time to heal at a gentle pace. I don't want to be the runner who has a vast lead all throughout the marathon and then gets a leg cramp at mile 25 and cannot even finish. Things are going as well as one could hope with a mismatch allogeneic transplant and I intent to keep it that way.

For instance, I canceled two semi-planned trips for November. Keeping me out of planes is tough with family on the east coast and lusting to visit foreign lands again soon. I was somehow asked to be on this panel for a symposium on women entrepreneurs in New York, but, even though I'd be technically 6 months and 5 days post transplant (and according to the books, you can fly after 6 months), I declined--- JUST IN CASE. The risks are just too high. Too many stories of patients who endure infections, frequent hospitalizations, and death, because they were coughed on by the wrong person. In that vein, I'm trying to be more vigilant about reminding people that if they're ill, please let me know (read: stay away).

I'm stronger than 100 days ago. I've watched my body heal and grow; it seems to take 3 steps forward and 1 step back, but it's moving toward that finish line. I'm down to only 22 pills to take each day. I have honed a super relationship with my roommate/Mom. I have started counseling for all the mental crap that my daily pills don't address (and perhaps exacerbate). Because we couldn't do much but hang out at my place, I've been endowed with countless hours of quality time with friends who visit. And I've discovered that there is a lot of non-raw sushi rolls out there-- bring on the shrimp tempura and spider rolls.

Hold the sashimi. For now.

Monday, August 04, 2008

Cautiously Optimistic

At Friday's long-awaited clinic visit with my main transplant doctor, we got the results from Monday's bone marrow biopsy:

"No evidence of disease".

In other words, no leukemia. No cancer. Gone.

This is worth a cheer. It's been interesting to me to watch people's reactions to this news. Across the board, people are jubilant, utterly giddy. I hear their (silent) sighs of relief that this is over, finally. It's fun being the bearer of good news.

A friend of mine has as her "Religious Views" on that she is "cautiously optimistic". I think that phrase would best characterize how I feel about the biopsy results. There are nine months until I'm one-year post-transplant, when I can actually contact my donor to thank her for saving my life. The reason for this one year delay is because risks are rife still and will continue to be for my entire life. In other words, it's not so cool if you find out the chick you donated marrow to kicked the bucket six months after she flew out to Warsaw to give you an appreciation hug. And the graft-versus-host-disease I have still mystifies my medical team as I suffer through their various drug attempts at remedy.

Of course, that whole "kick the bucket" thing is not going to happen for another, oh I'd say sixty years, but I have definitely become more than a little jaded about the concept of being "cancer free". The biggest fear is relapse. Who do you think has a better chance of developing leukemia (or a host of other fun cancers due to the treatments), me or any schmuck you pull off the street? Relapsing was more jarring to my sense of the world than original diagnosis. Coming home from yoga, planning my March 08 celebration of end of treatment, to find my sister on my bed in Boston with tears and news that my last biopsy... that memory resonates all too clearly and frequently. I have learned you cannot assume anything.
And, plus, who among us is "cancer free"? Who hasn't worried about standing too close to the microwave or wondered if it's true that anti-perspirant causes breast cancer? Who doesn't know someone who's died of the disease? We all face it every day, in our own ways.

So, yes, the biopsy results confirmed what other indications had suggested- no trace of leukemia. I remain cautiously optimistic. It's the best that I can do.