Going Home After Transplant: Not a Piece of Cake (Part 1)

When it was time to go home after my stem cell transplant, my doctor said, “Back to work in a year.” “A year?” I asked. It was hard to believe that I would be away from my newspaper job for a year. But he meant what he said. A friend said not to worry: Before I knew it, I’d be saying that I wasn’t ready for work. I shouldn’t have worried. There was plenty to keep me busy. My primary challenges were getting my energy back, getting my appetite back, and figuring out what to eat on the low bacteria, or low microbial diet. I couldn’t eat raw food or food cooked outside the home. Neighborhood friends had planned a food delivery chain, but they would have to wait a while.

I made an exception for an good friend and excellent cook. She scoured her counters, baked a delicious lasagna, and drove over quickly with the piping hot dish. The idea is to avoid having food pick up germs at someone’s house or sit around on a counter. I trusted her to do it the right way. Not allowed were restaurant food, fresh bakery products, and pizza (unless it was frozen). At first I didn’t care. I was nauseous most of the time anyway.

Learning my new normal

My mother had moved in while I was recuperating, and when I got my appetite back, we came up with some interesting workarounds. Instead of fruit salad, we cooked up what we liked to call fruit mush (more formally fruit compote.) To cut up apples we added grapes and berries, a little water, lemon and cinnamon. It was tasty and comforting, and it smelled great. Instead of the forbidden salad with raw veggies, I made a Nicoise variation. It had cooked string beans, tuna, hardboiled eggs, and endive, artichoke, chick peas, olives (or whatever) from a can or jar. I missed fresh bread.

A neighbor brought over a bread maker. Once or twice I even got the energy to bake from scratch. The first time I walked up a little hill to my daughter’s soccer game, I was so tired that I cried. I couldn’t believe I was the same person who had completed a 10K that spring. My feelings veered between happiness and sadness. I missed the nurses, missed knowing that if anything went wrong, a nurse was a call button away. I learned that this was normal, akin to post-partum depression.

What I missed the most

There is so much activity around getting treated, followed by the anticipation surrounding the birth of the new you. Then it all stops, and you wonder, WHAT NOW? Slowly I built back up, physically and emotionally. First I walked to the corner of my block and back. Then I went to the track across the street and walked, then did a walk/run, then ran. A physical therapist came to my house. It was a chance to spend more time with the two children who still lived at home. I couldn’t go to any stores. I took my daughter shopping and sat in the car and read while she shopped. I said I could do one activity a day. She understood.

I sat on the den couch and watched baseball with my son. We often stayed up late to watch The Daily Show. When my daughter heard the familiar theme music, she ran in. I loved sitting between them, cracking up at the faces Jon Stewart made when reading the news. I don't watch that much TV. But when I was hospitalized, sitting on the couch like that with them was near the top of the things I missed. I was so happy to be doing it again.

Read Part 2 of Ronni's series on going home after stem cell transplant, Going Home After Transplant: Challenges from Ridiculous to Real!

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