It was July, and I was exactly forty-one and a half years old on the day Dr. X walked into the hospital room to tell me the results of my latest MRI — I was in complete remission — no evidence of disease in my brain. I called my mom, and my girlfriend, and I read the report out loud to every doctor and nurse that came into my room that day. I had beaten cancer!
A week later, I was back in the hospital, with blood clots in my leg and my lungs. Blood clots are intensely painful, they can kill you, and if they don’t kill you, can leave permanent circulation issues and even lead to amputations. If you have lymphoma and you’re getting chemotherapy, you’re at a high risk for blood clots. It’s very important to stand up and walk several times each day, every day, to reduce the risk. Even if you’re tired, even if you don’t feel well, even if the nurse doesn’t want to disconnect your IV for a few minutes. Please don’t get a clot, please don’t forget to walk every day!
A few months earlier, in March, I began having a constant, severe headache. I went to two doctors about the problem, but I didn’t learn the cause until I woke up in the hospital, not knowing where I was. I’d never heard of central nervous system lymphoma — not many people have. My tumors were pretty big and I was very confused, having a hard time sorting out reality from things I was dreaming or imagining. And, as much as my friends and family, the doctors and nurses, the hospital chaplain and everyone else tried to help, nobody could really explain to me what was going on. So, as much as I can, I will try to explain here what happened to me after being diagnosed with CNS lymphoma.
A CAT scan showed the tumors in my brain, and a neurosurgeon performed a biopsy, which showed the tumors were CNS lymphoma. If you haven’t had a biopsy yet, don’t worry. You won’t feel it at all, and the small incision in your head will heal quickly.
The first medicine I got was a large daily dose of dexamethasone. This is probably the worst part of the whole experience. This drug made me crazy, literally. I had wild mood swings, from happy and sunny to sad and weeping to furiously angry, in a matter of minutes. These mood swings were all the more confounding because I didn’t realize that they were caused by the drug — I thought I was losing my mind. The drug also made me constantly hungry, to the point that I felt I was starving to death even as I gained forty pounds in a few months. Dexamethasone also changed my body shape, making my face and neck round and puffy until I barely recognized myself in the mirror. And while I gained so much weight, my muscles were wasting away, so I basically changed from a fairly fit, active guy into a weak, exhausted blob. I also suffered intense, long lasting insomnia. For months, I couldn’t sleep more than an hour or two, if I could sleep at all. My hands and arms seemed to always be shaking.
I wish that I had understood at the time that all the changes to my mind and body were from dexamethasone. I wish someone had told me that I wasn’t going crazy, that these changes were a side effect of the drug. They are all temporary, although it took several months after I stopped taking the drug to start feeling normal again. There are things that can help — I took an antidepressant to stabilize my moods, I got a sleep aid for the insomnia (it only helped a little). I wish I had been able to manage my weight better. When I was diagnosed, I quit my gym membership because, being out of work, I couldn’t afford the dues. That was a bad idea. I think that any kind of exercise would have helped me to feel better mentally and physically.
I started a chemotherapy regimen of high dose methotrexate with leucovorin rescue. In theory, each cycle would require me to stay in the hospital for five to seven days, but something always seemed to go wrong and extend my stay at the Scripps-Mercy Club and Resort. I had terrifying dreams while I was getting the chemo, and was often confused while I was awake. When I finally got out of the hospital, I was extremely tired, weak, but always happy to be home. I had some other weird side effects — extreme sensitivity to sunlight, everything seemed to irritate my skin, and I was always bruised. And my hair fell out.
There isn’t really much to do about chemotherapy except wait for it to be over. I tried to bring books and movies to the hospital with me, but often had a hard time concentrating on them. I was always happy to get a phone call, and email note, or a visit in the hospital. I wish I had had a nice pair of noise canceling headphones, the kind people sometimes wear on airplanes to sleep. That would have been a great gift. After chemo, if you have the chance to access a jacuzzi-type hot tub, I found that to be really soothing to my sore body.
I also got several sessions of Cyber-Knife radiation. It’s a special kind of targeted radiation therapy that is less damaging than traditional, whole brain radiation. If you are prescribed this, don’t worry, it’s easy. There’s no actual knife involved, but you will have to lie very still for 30-60 minutes with a plastic mask over your face (to prevent your head from moving). It didn’t hurt at all, and the only side effect is being really tired afterwards.
I also got several injections of intrathecal chemotherapy, with involves a needle in your spine. Again, this sounds scary, but it’s actually almost painless. The doctor will numb your skin and quickly stick a small needle in your back, and it’s literally over in minutes. I did always have terrible headaches after the injections — for some reason, caffeine helps to reduce the headaches. Vicodin helps, too.
In the end, my treatments were successful, and I’ve been in remission for almost three years. It took a long time to recover from the effects of the dexamethasone, and that drug cause a lot of damage to my bones, eventually requiring me to have total hip replacement surgery on both sides. I’m still working on getting back to the fitness level I had before the disease, but that also is common for any guy in my age range. All in all, I feel good, I’m happy to be alive, and my health is good. I hope these thoughts are helpful if you or someone you love is dealing with this disease. If you want to hear a little more about my story, I have a kind of on-line diary of my experience that’s open to the public — it’s at www.mountainmanchris.org. I wish the very best to everyone facing this challenge.
Chris Smyczek