A Beat Down Summer

September 30, 2003|

A Beat Down Summer

It has been a long time since I last wrote. A long time. I have a good excuse though. I was beat down. Really beat down.

When I last wrote, I was finishing up an experimental protocol at Sloan Kettering with a new antibody agent. It supposedly had much potential to cure the disease. We were quite hopeful. I was really beat down then. My nodes were quite swollen, to the point my left leg was twice the size of my right leg from a node blocking an artery. Pain was constant. But I was getting treatment that would supposedly would help.

The treatment didn’t work. At all. In the end of June I had my usual round of scans and tests, only to find the disease got worse under the protocol. Essentially I went almost four months with no treatment for my cancer; the drug didn’t work. My dad later did some investigational work and found out the drug didn’t work for anybody in the trial at Sloan or at the Cancer Center at Ohio State. It was a bomb. It would be easy to say it was a waste of time, but in reality I had to take the chance of doing the study. What if it did work? In addition, it was for science. Sometimes human guinea pigs are needed. Now they know the drug didn’t work. Back to the drawing board. In the meanwhile I was beat down.

With the disease left unchecked there were other major complications. I suffered from hypercalciumia (too much calcium in the system) the whole month of June. It was horrible. It affects the brain to the point where you can’t make connections and think. I couldn’t tell you what day of the week it was. I basically was a zombie that month. I couldn’t eat and dropped 20 lbs from my already skinny frame. All I did was sleep and watch TV. It was all I could do. I don’t remember much from that month, literally.

July got better but not much. The doctors at Sloan said there was not much more they could do for me. The only thing left to do is a chemo regimen to keep the cancer in check. There were (are) no other options. So in July I started a weekly treatment at Northside Hospital here in Youngstown called Gemzar. Gemzar is a newer chemo drug that has few side effects and can be used for an extended period of time. It mainly affects the blood counts, causing them to go down significantly. Many a transfusion I have needed in the past few months. (Please give blood!)

Since then I have been battling one thing after another. The latest battle is with an infection that has lasted the past seven weeks. It’s a cold, but worse. My immune system is so battered it can’t overtake it. It’s been ugly. Some nights I would spend all night coughing. During the day it was post-nasal drip city. Frustrating to the max.

Possibly related, possibly unrelated, I have lost hearing in my ears. My left ear has been blocked for the past four weeks with phlegm. I have even had a tube put in my ear to help drain the fluid. What a mess. A few days after having the tube placed both of my ears started ringing, and they haven’t stopped since. After a hearing test, we discovered I had lost 30% hearing in one ear and 40% in another. Nerve damage. The docs are baffled as to why this has happened. Maybe the infection? Maybe my weakened immune system? Maybe medication and drugs? No one knows. All I know is that I can’t hear very well and it sucks. Music sounds different, voices are muffled and I’m stuck using closed captioning on the TV. Who loses their hearing at 25? We are hoping it is only temporary, but it could be permanent. I am currently on high doses of steroids to try and remedy this problem. What a mess.

So that’s where I am now. Once a week I go in and get my chemo. It’s worked so far, I’ve had little pain to deal with. Occasionally I get a transfusion to keep my hemoglobin up. That\’s all.

Everyday is a battle. Some days are better than others. There are days when I just sit and watch TV the entire day. There are days when I can get out and walk and go to Barnes and Noble to read. There are days when I can go to ball games in Pittsburgh. There are days when I can’t get out of bed. Every day is different. Every day is hard. My body is beat up. My mind is beat up. All of the drugs and medications have wasted it away. Some days I can’t think straight or walk straight. Some days it takes all of my energy to walk up the steps to go to the bathroom. Every day is a battle. Please keep me in your prayers and thoughts like you always do. I promise to do my best in terms of keeping in touch with e-mail and phone calls and visits. Forgive me otherwise. Thanks and I’ll try and write again soon.