One Survivor’s Perspective
It’s Not a 10K, It’s a Marathon

By Jim King

On March 17, 1994, I saw a physician for a simple ear infection. After noticing that my left abdomen was enlarged, he ran a few tests. Ten days later I was diagnosed with primary myelofibrosis. An oncologist told me I would probably not survive. My only hope was a bone marrow transplant, which had been successful in a few isolated cases.

I was in shock. I felt fine. I had completed the Chicago Marathon only four months earlier. I couldn’t be that sick. The denial phase lasted only a couple of days. Then I entered a state of despair. I was angry and confused. I had a wonderful wife and three small children whom I adored. I was going to die and leave them alone. I felt like my family was being cheated. I had dreamed of seeing my sons graduate from college, but now kindergarten was a stretch.

After a week of despair I roared into action. I knew I was in for the fight of my life and I needed a plan and support team. The first thing I did was take a two-week vacation with my family and trade in the conservative Volvo for a Miata. Now was as good a time as any to have a mid-life crisis. I read every book I could on survival and support. One of the books talked about building a support team. My wife was the coach (a Lou Holtz type). My brother and sister were the dependable line, my old college roommates were the running backs, and a few great friends who had endured personal tragedies were the defense. As my transplant day grew closer, many other people joined the support team and were crucial to my ability to maintain a positive attitude.

I planned for the worst. I finalized a will, set up educational trusts for my children, finalized a buy/sell agreement with my business partner and even picked out the songs and prayers for my funeral. I didn’t actually expect them to be used, but wanted to get all the prudent planning out of the way so I could focus on winning. I was scared, but anxious to get on with it. My motto was “Bring it on”—false bravado, probably, but I wanted others to catch my optimism.

I was amazed at the number of people who flocked to help my family. Friends would ask what they could give me. I asked for platelets, and for them to put a collection of their favorite songs together on a cassette tape to remind me of them and keep me fired up during the transplant. I got a lot of great tapes but not a lot of platelets.

On June 28 my eight-pound spleen was removed. I recovered in a couple of weeks and felt ready for the transplant. I felt lucky—lucky to have had such a great life so far, lucky to have a wife who loved me, lucky to have my sons and lucky to have an interesting career. I was mentally prepared for the transplant and ready to go.

I entered the BMT unit on a sunny day in August full of optimism. The first thing I did was shave my head. It was my way of establishing who was in charge of this contest. I wasn’t going to let radiation take my hair, I took it first. I decorated my hospital room with pictures of family and friends, a stereo, CD player and VCR, a small basketball hoop, Nintendo and some books. The books proved to be worthless because I quickly lost my ability to concentrate, but the tunes really helped. Whenever I was down or a new drug or procedure was to start, I would crank REM’s song “Superman” as loud as possible. Great songs helped keep me pumped.

After I got my room set up the nurses introduced themselves. They were great. Nurses are a pretty special breed to begin with, but the BMT nurses were incredible. They bent over backwards to help me, comfort me and educate me.

The first procedure was an intraspinal injection of methotrexate. It didn’t hurt, especially when compared to a bone marrow biopsy, but I had to lie flat on my back for six hours. It was pretty boring so I counted all the dots on the ceiling.

The next morning the real fun began. At 7:30 a.m. I went for my first round of radiation and then had a Hickman catheter installed. I developed a love-hate relationship with my Hickman. I loved it because I was no longer stuck with needles all the time, but hated having it stick out of my body.

After five days of radiation therapy, I was given a chemotherapy drug called VP-16. I tolerated it well with few side effects. A week later my brother Kevin’s marrow was transplanted into me. It was an emotional day, but the process itself was a yawner. It took three hours to infuse the new marrow and I felt great. I started to think that the stories I’d heard about how tough it is to undergo a BMT were exaggerations. I felt a little weak, but was doing fine. I went to sleep that night feeling on top of the world.

Jim King celebrated one year post-transplant by climbing a Colorado mountain.

The hammer came down the next morning. It was not gradual. I woke up feeling sicker than I had ever felt in my life. My hair was all over the sheets and my own spit made me nauseous. I had a fever, diarrhea, and could barely hold my head up. The next 10 days were terrible. I lost 30 pounds, got several rashes and infections, and had continuous fevers. This was the crucial period. I was getting packed red cells, TPN, antibiotics, neupogen, fluids and steroids. At one point I counted 15 different bags on my IV pole. I was also given a wonderful little button that allowed me to self-dispense morphine every five minutes. I pushed it a lot. I don’t remember much more about that week—I’ve blocked it out. It’s a fog and I’m glad.

I had trouble eating because of the nausea and sores in my stomach and mouth. I began to feel better about 10 days after the transplant and was anxious to go home. I asked the doctor what I had to do to get out of there. He said my blood counts had to improve and I had to have solid stools. I couldn’t control my counts, but I could control my eating and stools. That night I ate a ham sandwich—bad choice. It hurt a lot, but I was determined to hold it down no matter what. It came up a few times but I closed my mouth and swallowed—gross, but effective. My superstar nurses gave me hot packs to put on my stomach and encouraged me to keep fighting. I did, and soon I was eating regularly. Eating wasn’t pleasant, but I was doing it. Finally a solid stool. I still can’t believe how excited I got when it happened.

At last the head of the transplant team said the four words I thought I’d never hear: “You can go home.” I was ecstatic. I packed up my “war room,” hugged any nurse I could find, and was wheeled out of the hospital. The air outside smelled wonderfully dirty and I took in all the sights. I was discharged just in time to get stuck in Chicago’s rush hour traffic and I enjoyed every minute of it. My family had decorated our house with balloons and a big sign that said, “Welcome Home Daddy.” I felt like a grade school kid whose long year had just ended and whose summer vacation was just beginning. I thought the tough part was over. Now I would rest a bit and resume a normal life.

I’ve never been so wrong. The inpatient stay was the easiest part of the BMT process. I was focused and fired up for the inpatient stay of the battle. All the worldly things, such as my role as a husband and father, were secondary to winning my inpatient battle. Other routine things such as house payments, medical bills, career and church weren’t even on my mind. Nurses and doctors took care of me. It wasn’t easy, but I felt I was making significant progress toward beating my disease.

The clarity of purpose and sense of progress were lost when I came home. Instead of feeling like a successful patient, I felt like a failed person. All those worldly things that I had ignored in the hospital, such as my role as husband and father, came roaring back. They were once again important and I felt I was woefully inadequate in those roles. We had three children, a 4-year-old and a set of 18-month-old twins, and I couldn’t help at all with their care. I wasn’t allowed to change a diaper, and didn’t have the strength to carry any of my boys upstairs. All my self-esteem and self-confidence were gone. I couldn’t imagine ever functioning like a normal person again.

The steroids and cyclosporine made me extremely emotional and irrational. I would cry because I had too much milk on my cereal. I couldn’t sleep (steroids), couldn’t shower (Hickman), couldn’t read (no concentration), couldn’t drink coffee in the morning (nausea), couldn’t exercise (no strength), and couldn’t get close to my children (might get an infection). Even taking my medicine was confusing and overwhelming. I spent time worrying about things I couldn’t control. I was convinced I was going to run out of money, lose my house, my dog, etc. There was no measured progress anymore. I felt I was regressing.

To get out of my emotional rut, I began setting myself up for small victories, and treating myself to tastes of normal life. I would see how fast and accurately I could flush my Hickman catheter and change my dressing. If I did it in record time or could safely eliminate a step, I’d reward myself with a nap. I added an additional lap to my walk around the neighborhood every other day and felt like a winner. I’d drive my car to Burger King, get a drive through breakfast and cheer when I didn’t throw up. Not a big achievement, but it seemed huge then. I shampooed and conditioned my bald head so that I’d feel normal. I forced myself to read a whole section of the newspaper without giving up in frustration. I even called a restaurant and had them set up a table in an empty banquet section for me and my wife. I couldn’t eat much but the fact that we were going out for dinner made me feel normal again, at least for an evening.

The number of small victories increased as the dosages of steroids and cyclosporine tapered off. I began to feel normal around Christmas—120-days post-transplant.

Currently, I’m 14 months post-transplant. I celebrated my one-year transplant anniversary by climbing a mountain in Colorado and getting second-row center seats for a Jimmy Buffett concert. Lots of people celebrated with me and gave me inspirational messages, gifts and support. My favorite gift came from Dr. Daugherty of the BMT unit—an interpretation of my latest bone marrow biopsy report. The interpretation pretty much describes my life today—normal.

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