Chapter 16: Home

Chapter 16: Home

Day +14, 20 days after I had checked in, I was going home. The nurses assured me that I had done well, and gotten through the process with the minimum of pain and problems. Two hours after I was wheeled down to interventional radiology for the removal of my catheter I was in my wife’s minivan driving home. The next week I went into the ROC everyday for blood tests, and the levels continued to slowly go up.

The big issue being home was food. Actually, food represented two problems. The first problem was that I didn’t want to eat. As Nurse H told me, “Think of eating as a job. It is something you have to do.” As I said in my introduction, eating was not normally my problem. The whole medical team even gave me liberty to eat anything I wanted. “This is your chance to eat Twinkies, ice cream, whatever you can get into your gut and keep it working.”

So why was eating junk food a problem? We come back to our favorite game: name that brand new sensation. When I looked at or tried to eat food it wasn’t nausea. It wasn’t repulsion. I just had a deep and intense disinterest. I would eat, working to take in every fork of the food. Water tasted bad. I managed to get down Gatorade. I slept a fair bit, took plenty of Ativan, and managed.

One Friday night Andrew, my youngest boy, had an orchestra performance at the high school. I took every narcotic I had so I wouldn’t miss it. I was on two anti-nausea drugs, oxycodone, and a few other goodies the doctors had sent me home with. I made it through the concert. The next morning it was like I turned a corner. My stomach was not only fine to eat, it was better than it had been in years. I took naps, but felt like I had tons of energy. I practically danced into the exam room the next Monday to see Dr. G. It was great.

She took the opportunity to remind me of the second problem with food and what was left of my immune system. Chemo not only killed off my stem cells, but a fair amount of the immunity and antibodies I had built over a lifetime. This meant avoiding crowds. This meant avoiding folks who were sick. I had to stay away from folks with a recent vaccine. For example, soldiers going overseas received a smallpox vaccine. I couldn’t be near them.

The big thing I had to worry about, though, was food-borne infections. No fast food for 6 months. No deli food. No food from a buffet. No food that hadn’t been either fully cooked, pasteurized, or processed in some way. As Nurse H put it, “Avoid food that goes through too many human hands.”

To drive home the point Dr. G told the story of one of her patients who stopped at an Amish roadside stand. She bought and ate some cheese curds. Then she died of listeria. These kinds of stories go a long way to making one paranoid about eating. In fact, as of this writing (nearly two months after the transplant) I have eaten out exactly twice.

As the weeks have passed I have not quite felt as good as I did after my son’s concert, but I’m doing very well. My wife and I go to the local YMCA and walk the track. I’ve been back to my office a few times. I am back chauffeuring the kids around.

The other day I was meeting with a former student back in my office for the first time since the transplant. He asked me if it was all done. Was cancer behind me? There is an easy answer to that question: the transplant is not a guarantee; it is only a 30-50% chance at a cure. It will be weeks until I get my first post-transplant PET scan. That will be the first in a series of scans and monitoring that will go on for years.

There is, however, a much harder answer as well. It is less concrete, and will more deeply affect the rest of my life. I will never be able to put cancer completely behind me. I will always be looking over my shoulder wondering if it will come back. I have talked to many cancer survivors and they tell me it gets easier. The doctor’s visits will get further and further apart and more routine. That may be.

For now, I am still scared to plan past a month. I still look at my kids asleep and wonder if I’ll see them graduate college or get married. For now I still worry about my wife alone. It turns out that cancer does not just attack my blood or grow in my lymph nodes; cancer gets into your head. This can either keep you in a constant state of fear, or, you can use cancer.