Three days into my first Chemotherapy session I felt fine. I was sure the next 4 months would be easy. On Friday I felt numbness in my hands and feet, and I thought the tumor had started to impact circulation like it had done before. . However, instead of getting better as circulation improved, it got worse. By 5PM Saturday I was weak and could no longer easily control where my feet went. I had a hard time walking back to the car from my favorite swimming hole. By Sunday I had full neuropathy: I wasn’t moving my hands or feet well, my arm and leg strength had deteriorated, and it was clear something was very wrong and getting worse. Seven hours at Hartford Hospital gave me the answer of “your reflexes are being shy.” That was an understatement. When hit by the little hammer, there was a nearly imperceptible twitch and not the swing they would expect. By the time MSK doctors would repeat the test “shy” had become “none.”
By Tuesday the neuropathy had hit whatever nerves help control my blood pressure and heart rate, and both spiked. Mel and my mother took me to Memorial Sloane Kettering’s emergency room where I was admitted and would spend the next five days undergoing MRI after MRI, and doing every possible neurological test that the Doctors could think of, and then doing them again as new doctors and residents were brought in to see me. No one had ever seen this happen before on a first round of chemotherapy. I failed the nose touch test, nearly poking out an eye of some poor resident standing to my left. I failed the stand with your feet together test. I failed the strength tests. I failed the sensory tests with the vibrating tuning fork. I failed the poke test with the broken toothpick. Then the doctors checked If failed them all again, just to make sure.
They looked for any underlying condition that might have caused or exasperated the neuropathy, but none were found. There was no other possibility other than the trial drug I was on. Friendly Fire. The drug had hit the wrong place. My nervous system was collateral damage.
Now, having had category 3 neuropathy for a month, each time I go to a chemo session I think of Socrates drinking hemlock. What did he think as he lifted the chalice to his lips? As he willingly administered the poison? My arm on the table I drink the hemlock in the hopes that the poison doesn’t kill me.
The neuropathy has made life difficult. I gain strength, then lose it. I gain hand coordination, then lose it. Fatigue sets in and my hands and feet flop like fish out of water. I sleep hoping to wake up refreshed, only to find things working worse than the day before. Some days I can play with Alex, try to follow him on wobbly legs, or follow him to the swing. Some days that is too far.
I have been forced to realize I can’t do this alone. My family can’t do this alone. My parents and wife can’t do this alone. Cancer was hard— cancer with neuropathy is almost impossible. I am very thankful for those family members who have stepped up with time, effort, comfort, companionship, and some very thoughtful gifts to help us along. Mel and Liz have been extraordinary. Aunt Judy has been a great support to Alena with time, companionship, and food. I have been sick for 4 months, and have at least 6 months to go before I can get close to being “well” again. This will be a long journey.