Personal Experiences of a Patient With Advanced Hodgkin's Disease

In the fall of 1994, I was a junior in college, double-majoring in industrial design and photography. The semester was going just like any other. I had a lot of work to do all the time. On a normal day, I would get up at 5 a.m., go to the recreation center to lift weights for 3 hours, go home, take a shower and go to classes. Then I'd run errands, pay bills and take care of things around the house. In the evening, I had another class. Then back to the rec center to do aerobic exercise. I didn't drink, didn?t smoke and didn't do drugs.

For about a year before, I had been getting sick more frequently. I noticed that things, such as a cold or the flu, would take me up to 4 or 6 weeks, instead of the usual two, to recover. I started going more and more to the clinic on campus, but was disregarded.

The first major thing that happened was a rash all over my body, which looked like ringworm. The doctors on campus had no idea what it was. After a couple of weeks, it just went away. I was still getting sick, so it was back to the clinic all the time. I thought I was just working out too much or was too overworked from classes.

In mid-October, the week of my birthday, I was sick again. By the end of the week, totally exhausted, I spent the whole weekend in bed. I had been spiking some pretty high temperatures by then, up to 101 or 102, vomiting and not being able to eat. I kept calling the clinic on campus, asking them what was going on. They said it was just a cold and not to worry about it. On one visit to the clinic, they decided to take some x-rays, and they found a dark spot on my left lung. They just dismissed it as bronchitis.

One night here at home, I was very sick and spiked a temperature of 105. Becky took me to the emergency room. I was having pain in my lower abdomen and groin. The doctor said I might have hepatitis or might have a hernia. We went back and forth to the hospital quite a few times, spending a few nights there for testing. They did x-rays, CT scans, tests and then a lung biopsy. The dark spot on my lung turned out to be a cancerous tumor. I was told I had Stage IIIB Hodgkin?s Disease.

Everything that would happen to me next was explained by the doctor a few days later. He suggested that I try to preserve some of my sperm for future use, but my illness progressed very quickly, and I had to return to the hospital to start chemotherapy. The following day, I was moved to ICU because of an unusual reaction to the chemo. The doctors were there trying to figure out what was happening. They had never seen anything like this before.

I was flown to a university hospital, where they staged my Hodgkin?s Disease as Stage IV. My liver, kidneys, spleen and pancreas had stopped working. My heart beat was erratic, and I was having trouble breathing. I was placed on a ventilator to regulate my breathing and had various minor surgeries. They also medically induced a coma so I would not waste any energy by moving, and so I would not injure myself. This coma lasted approximately 2 to 3 months, while they tried to stabilize my condition. Because I was on a ventilator for so long, they eventually had to give me a tracheotomy to prevent further damage to my respiratory system. This happened after about 2 weeks. I was now unable to breath for myself. Shortly thereafter, they performed open-heart surgery to remove fluid that had collected around the sac surrounding my heart. The cancer, which they had first thought to be just in my lungs, was also in my liver, spleen and kidneys and was very advanced.

When I first started waking up out of the coma, it was February or March. I knew I was in the hospital but didn't know why. I was at the hospital for 3 to 4 months in ICU, where all they could do was pray. I dramatically wasted away. I was a strong 285-pound weightlifter, but before I left that hospital, I weighed only 145 pounds. I couldn't move, talk or do anything at all, because another side effect of the chemo was peripheral neuropathy, a nerve damage disorder.

I was transferred to a hospital for long-term or permanent ventilator patients. "V" was the last chance hospital for those people. I was only there for 2 weeks, because during that time, I received chemo again, but I had complications, and it was stopped. They moved me to the ICU at "V". It was found that I had a bleeding ulcer in my colon and was transferred back to the university hospital for more observation and testing. I returned to "V" after 2 or 3 weeks.

While at "V", their main goal was to get me off the ventilator, so I could breathe for myself. They spent 4 months trying to do this. They also started doing some physical therapy with me, and I could finally start to move my arms and my legs a little more. It was very slow and hard.

Near the end of my stay at "V", everything started happening all at once. Over a period of two or three weeks, I began making major improvements with my breathing, and my arms and legs were moving more. Finally, I was off the ventilator and breathing on my own. The doctor decided that my physical therapy had progressed well enough to send me to a rehab hospital. We chose one back in Illinois, only one hour from my home.

At this new hospital, I was in the rehabilitation wing, where most of the patients were older people recovering from strokes. The goal of this hospital was to get me walking and using my body more to do things for myself. I worked diligently on standing, arm and leg exercises and finger dexterity. I stayed here for almost 2 months. Throughout this period, they were still doing a lot of tests. I continued to have trouble breathing and was very weak and vomited quite frequently. I had another CT scan, which showed that there were again lesions on my liver. That same week, I found out I was sterile, and that I'd probably never walk again.

I decided to return to my home hospital to begin the chemo again. Almost a year had passed since I first left. I was scared that the same thing would happen all over, but my doctor assured me he would use different drugs this time, and the chances of it happening again were negligible. My chemo this time would last 24 hours a day for 5 days straight.

The first round of chemo went very smoothly. I had few problems and no vomiting. I kept working out, trying to get stronger. I practiced sitting up and walking, but it was still very hard. The second round of chemo was more difficult. After this round, the hospital would not keep me there any longer, and it was decided that I should be sent to a nursing home for rehab and recovery in between chemo treatments. I was only at this nursing home for 4 days, and I had to go back to the hospital until my blood counts returned to normal. After this recovery, I decided to go home. It was the first time in a year that I was out of the hospital, and the first time I had been home.

Things here were going really well, but I still had trouble breathing. This seemed to get worse and worse. Eventually, I returned to the hospital for another round of chemo, but it had to be stopped because of my breathing difficulty. They discovered that the original tracheotomy I had a year ago had scarred my trachea severely, causing it to collapse. I was flown back up to the university hospital, and underwent reconstructive surgery for this. They placed a tube inside the trachea to hold it open. After 6 weeks, I returned for more surgery, where they removed that tube and placed another tube just in the opening of my neck. Through this tube, not only could they monitor the healing of the inside, but it would allow me to breathe. While I was there for the second surgery, I had another CT scan done, to see if I was in remission. They found two more tumors on my liver. After my neck had begun to heal, they began the chemo over again.

I received two rounds of chemo this time, and then it was discovered that I was in remission. My doctor said that no one has ever had the complications that I have had and lived this long, so he would have to play it by ear as far as my treatment was concerned. We decided to hold off on the chemo until there were more tumors. In the meantime, I have had laser surgery on my trachea to remove more scar tissue.

Tomorrow, July 12, I will have another CT scan to see if I am still in remission. Of course, I won't have the results until next week, so wish me luck!!

Stephan Marsh