"Don't Overdo it."

So, I'm home. I'm surrounded by shopping bags of stuff that must be sorted through, but I'm taking my time. I'm thrilled to sleep in my own bed. Some dear friends helped us schlep our stuff from the hospital in their car and they lingered and chatted for hours and it felt so pleasantly normal.

Being home feels scary and good. I have gotten lots of information about what I can and cannot do, lots of advice about how to handle this early recovery period.

I have a whole team of medical folks working with me now who are relatively new and unfamiliar. In the short time I have been in transplant land, however, I feel we have gotten to know each other quickly. Two of the key players are Bita and Anna. Bita is a nurse practitioner and Anna is a Physician's Assistant (I think. Maybe they're both nurses. I can't remember.) Anyway, Bita is from Iran and Anna is from the Ukraine. They often came to my bed as a team and they were very intense. They leaned over me like a couple of hawks. "Leah, may we examine you?" Bita would always ask, and then they would get out their dueling stethoscopes. It was Bita who gave me the lowdown on what I can and cannot eat, on what to do If certain symptoms set upon me, and what I should expect from myself in these early days. "You're going to be tired," she reminded me several times."If you want to have an apple, you should peel it. You can have a salad, just wash everything well."

We asked Bita to explain some of the precautions and she gave us a very poetic response, which is that my immune system is like the tiny shoots of new plants. The roots are growing into the earth, but the leaves are new, and very fragile. Mom is a gardener and especially liked this metaphor. She remarked that new plants have false leaves which fall off before the real ones begin to grow.

This morning it was Anna who wrote out my discharge papers and sent me off into the world. We chatted a bit about the guidelines again, covering some old ground, but I didn't mind. She soundlessly mouthed the words, "You are doing so good. So good." Then she said, "Don't go crazy. Don't overdo it." I said, "I know, I'm going to be tired." She didn't correct me -she just kept talking, and I quickly saw that this was not what she meant. "Don't go crazy cleaning the apartment all the time," she began. "If you want to meet a friend for coffee, go ahead. Go into the city, just take a cab in the daytime. If you want to go to the Guggenheim, okay. Just go when it's not crowded. If you want to go to a restaurant and have dinner, meet people, have a good time, it's okay. Go to the botanical garden, go to the movies. You don't know what's going to happen. Live your life. Don't overdo it."

Clearly, "Don't overdo it" meant don't overdo the fear, the caution, the paranoia. She also reminded me that if all went well, the anti-rejection drugs would be tapered down in a matter of months. None of this is forever, assuming things continue to progress well. That, however, is a big assumption. We've jumped a major hurdle but there are many more to come.

I've done a bit of reading and spent some time in cyberspace with other transplant patients and I know that Anna's advice reflects a fairly lenient approach. Many people wait months to go to a restaurant, for example. Anna's advice goes into the mix with everything else I've gleaned, but I recognized immediately that it was extremely valuable. Even if I beat the leukemia, I could have a variety of other problems which could limit me significantly in both the near and distant future. And much as I hate to think about it, this early triumph against the leukemia is just that; we have a long way to go and my illness is especially difficult to treat.

I'm tired, my muscles are puny from so much hospital time, and I'm paranoid. Am I going to jump in a cab and go to the Guggenheim tomorrow? Hell no. I'm way too chicken. I'm taking baby steps. Still, I want to find the guts to venture out, carefully, and live my life, as Anna said. Because when all is said and done, it is still my life. A lot of the time it doesn't feel like it, but Anna's talk reminded me that it is. I do need to live it, however carefully.

It's a balance thing. My shopping bags will sit here for a few days...I'm not going to overdo the unpacking and organizing. I do plan to take a walk through the neighborhood tomorrow, though - the longest walk I can stand.

Thanks and love. Stay tuned.

xo Leah