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.


Nancy said...

You got it all right, girl!!! Take is easy and be content because you are alive due to someone's precious gift. I didn't do much the entire first year. Slowly, you begin to add things to your calendar and suddenly, you realize that you are back in the main stream! Be careful when making decisions on food or events and always ask yourself, "Is it worth it?"

Err on the side of caution. Love, nancy

Abby Wood said...

Love it. And shrimp tempura is, when you get really honest with yourself, much yummier anyway.

Is that Gioia's artwork? God. She should be an illustrator.

Much love from the folks here, who are constantly asking how you're doing. You keep being cautious so I can keep reporting good news!


Anna said...

What a wonderful post!!! I am overcome with peace at the prospect of your slow and steady recovery. It shows amazing strength and maturity on your part to refrain from your love of crazy-active, jet setting adventures/challenges. Things are going to get MUCH better, I can feel it! LOVE you xoxo

Lyndsay said...

I am so glad to hear that things are going well for you. I have been following your progress and have been greatly encouraged by your story. I am 22 and have leukemia as well. I am going to be having a mismatch unrelated bone marrow transplant next month. The part asain in me made it difficult as well to find a perfect match. I just wanted to say thanks for all the encouragement you have given me through your blog.

christina said...

100 days! Woot!

The crispy bits on shrimp tempura are delicious...

Anonymous said...

Thank you for the smile (and the tear) today Erica. For some reason you popped into my head this afternoon and I realized I had not read your blog for several weeks. Having gone through a similar journey with my father and AML, I know every journey is unique and personal, but there are many of us cheering for you from the distant sidelines.

Phillip (OCS)