If I were asked to give what I consider the single most useful bit of advice for all humanity it would be this: Expect trouble as an inevitable part of life and when it comes, hold your head high, look it squarely in the eye and say, “I will be bigger than you. You cannot defeat me.” – Ann Landers
The Pain
It all started around the end of June 1998. I had a pain in my upper left thigh and hip. It was unusual because I did not recall injuring it. After a week of pain, I went to an urgent care center to see if they could tell me what was wrong. The doctor took an x-ray of my pelvis and hip and said nothing showed up. The doctor said that I might have pulled a muscle and he suggested that I go see an orthopedic specialist. I saw the orthopedic specialist twice and both times he told me that the muscle was pulled and that the pain would go away. I was told to take something for the pain and just wait until it subsided. I knew something had to be wrong because the pain was bad and it was constant. It was even there while I was laying in bed sleeping.
August 7, 1998 was my first trip to the emergency room because the pain had gotten so bad. Again, an x-ray was performed and nothing showed up. They prescribed pain medicine and let me go home. I followed up with my regular doctor and he sent me to another orthopedic specialist. Right around this time a lump was starting to form on the top of my leg, I thought that it was just some swelling. I went to the new orthopedic specialist and he scheduled an MRI.
The day of the MRI, I was at the emergency room again. I had woken up screaming because the pain in my leg was so bad and it would not go away. In the ER, they gave me a shot for the pain and then I went to have the MRI done. When the doctor received the results from my MRI, he sent me to a different doctor. This new doctor looked at my leg and the MRI and told me that I had a tumor on my leg and it could be cancerous.
I went to Children’s Hospital of Wisconsin that day for some tests and was told that if the tests were O.K. the doctor would call me that night. On the other hand, if I did not receive a call I was supposed to go to the hospital the next day for a biopsy. I did not get a call that night. I was really starting to get worried.
The Diagnosis
September 2, 1998 I was at the hospital for the biopsy. They told me that I would have the biopsy done in surgery and if the tumor was cancerous, a bone marrow aspiration would be done to see if the cancer had spread to my bone marrow. A central line would also be inserted while I was still under anesthesia. (The central line would be used to administer chemotherapy directly into the artery above my heart without constantly injecting my arms and causing damage to my veins. It also makes blood tests and transfusions easier and painless.)
After surgery, I was pushed up to the 5th floor. I had no idea how well I would get to know this floor. When I woke up, I could feel something in my chest and at this point I knew that I had cancer. I looked at my mom and sister and said “I have cancer, don’t I?”, and at that point we all started crying. I was right. I had cancer.
Later on, I met my oncologist and a few other doctors. The only good news I received that day was that my bone marrow was clear of any cancer cells. The doctors gave me a choice of two different treatment options and gave me time to think about it. One treatment was the standard protocol. The other was much more aggressive and would involve using my own cancer-free bone marrow to help my body recover from the extremely high-dose chemotherapy that the aggressive approach required. It also involved total body irradiation. Both treatments had side effects (including cancer), but the second option had far more dangerous risks.
I told the doctors right away that I wanted the standard protocol. I told them to start as soon as they could because I was going to beat this. (I chose this option because the standard protocol had been working for other patients and was potentially less harmful to my body.) Sometimes surgery is a treatment option, but in my case the tumor was very close to my hip socket and serious reconstruction of my hip or total amputation of my leg would be required.
The Treatment
For the next few months, I learned a lot about cancer and the field of medicine. Finally, after almost three months of pain I knew what was wrong and my pain was starting to go away with the treatments. About every three weeks, I was in the hospital for chemotherapy. The treatments would switch back and forth from three days to five days every three weeks. Between the treatments, I would go the hospital for weekly check-ups.
During this time, I met Sam, a five year old with leukemia. We got to be very good friends and he made being in the hospital not so bad. I believe that I helped him, too since there were many things that I had been through already that he was just starting to deal with. I lost all of my hair during this time but it did not bother me too much. I also had to stop going to school because I was be missing too much material. I also started to lose weight. I was not able to eat because of the nausea I experienced while I was receiving the chemotherapy. During this time, the tumor started to shrink from the chemo.
My oncologist was surprised at how well the tumor was responding to the chemo. This was good news, but there was bad news as well. Recent scans showed that the cancer had spread to my lungs. My oncologist suggested that I go through an autologous bone marrow transplant (BMT). This was the more aggressive treatment I had been told about when I was first diagnosed. I took some time thinking about whether or not I should have the transplant. One good thing was that I would be able to use my own stem cells (marrow) and not have to rely on a donor. Finding a suitable donor can be extremely difficult and the procedure is very risky. With a donor, you also have to take daily anti-rejection medicines for the rest of your life. I decided to go with the BMT. I wanted to be sure that the cancer was taken care of aggressively.
Before the BMT, I had many tests and then my stem cells were collected. The stem cells were very simple to collect – they were taken the same way one would donate platelets. Blood is taken out through a needle, the stem cells were filtered out and frozen, and the rest of my blood was returned to my body. It was very painless. After this, I had localized radiation on my leg and also to my whole body. Next, I received very high dose chemotherapy for three days. After that, I was in the hospital waiting for the BMT. The high-dose chemo and total body irradiation wiped out my entire immune system as well as the cancer. At one point, my white blood cell count was zero – I could not fight off any infections and had to be in total isolation. Without the marrow transplant, I would have died.
On January 26, 1999 I received my own bone marrow back. The process worked just like a blood transfusion. The stem cells were in a liquid form and they slowly dripped into my blood stream. At first, it was not that bad. It was just like my earlier treatments. Then things started to get bad. I felt very sick and could not taste any food. There is nothing I can even compare it to. This lasted for an entire month. I was throwing up constantly, I couldn’t eat, couldn’t taste any food, and I had severe mouth sores, severe diarrhea, nausea, and pain, and no energy to do anything. I felt like I was on the verge of dying. It was the worst time of my life.
Despite all this, I never lost hope. There was one night when I had a breakdown, but I kept fighting. Another thing that I had to deal with was the radiation burns that I had on my leg from the localized radiation. The skin on my leg was brown and peeling off. It hurt very badly. During this time, I had to stay in my hospital room until my blood counts went back up. Thankfully, my family spent a lot of time visiting and playing games with me. (I was pretty grouchy though and didn’t talk much. I mostly slept while they visited.) My mom even crocheted a king-size afghan that I still have on my bed!
Finally, after almost a month in the hospital, I was able to go home. At home, I was so tired and weak that all I could do was sleep for the next 3 months. Even today, I still have problems with fatigue.
Life After Cancer
These days, I just visit my oncologist once a year for a checkup. I have blood work done, have a bone scan, and an echocardiogram. (The echocardiogram is done to watch for heart damage that can be caused by chemotherapy.) I only have a few side effects. In addition to fatigue, I also have some problems with my short-term memory. Another side-effect is that I cannot have biological children. I can’t believe how much cancer has changed my life. I realize how much things in life are worth. There are so many things that are priceless and should not be taken for granted. I will never look at things the same way I did before I had cancer. Life is very precious.
I feel blessed to be very close to my family. I am also very lucky to have found and married a wonderful woman who had adoption in her heart long before I met her.
Today we have a beautiful daughter through the miracle of adoption.
