The list of possible side effects on the consent was long. The one that I focused on was vomiting. Vomiting from chemo was very familiar and the most disruptive in every way. Although the oncologist reassured me that modern drugs hold it in check, Zofran only took the edge off for me when I went through the first round eight years ago. However, this time Zofran is not even a consideration as it is now not even allowed with the new protocol. Until I had chemo, I would puzzle about why people had carpets on the bathroom floor. Lying on the floor curled up on a tiny bathroom mat after chemo, I finally understood. Without the strength to do more than lift my head to vomit again, any small comfort would have felt like luxury. Fortunately, that particular side effect has thus far not been one of my obsessions this round. Like many things about cancer, I worried needlessly.
The side effects that I have experienced seem to be random and I think fall into two categories: Things that would have happened anyway and things that are definitely due to the drug.
For example, my annoying cough is listed as a side-effect possibility. But then my son came home for break with a soul racking cough that makes his ribs rattle. If my cough goes away it is an infection, if it does not then it’s the drug. It’s not mets to the lungs. There is a certain reassurance to frequent scans.
The drug has resulted in abnormal blood results. It is definitely having an effect on the liver and the numbers get more out of whack every time I have them taken – i.e., every two weeks. No one even seems mildly surprised.
The worst thing about the random bouts of nausea is that they are totally unpredictable. I can be on a run, watching TV or at a lab meeting and it hits with no warning. The nausea started the day I started the drug and there is not a day that goes by when I am not sidelined for at least a few minutes while I try to get the gastric churning under control. It is not usually outrageous. Sometimes I can distract myself but at other times I just have to sit very quietly and let it wash over me and wait until it passes.Mouth ulcers have been wicked. They peaked about four weeks after starting the drug when the problem escalated from one or two at a time to feeling as though a mouth ulcer volcano had erupted into my mouth and left huge puddles of white larva all over the inside of my mouth. I had more white than pink on my gums. Needless to say, the pain was debilitating. The nurse wrote a prescription for a local anesthetic which I was to mix with Maalox and swish around my mouth. The pharmacist warned me not to eat after using it as I could choke or bite my tongue or cheek. This advice seemed to contradict the point of using it. I tried using a q-tip to dot the ulcers but there were too many. It was time to face my demons. I was going to burn off the pain with a nice hot salsa and let the capsaicin do the work of numbing my mouth before I ate. The pain from those chilies was exquisite. I put the salsa in my mouth and clamped my jaw while the pain washed over me and tears fell in torrents. After a few minutes, I could eat.
The good news was that I did find a long-term solution by accident. I sometimes get cold sores (herpes on the lips) and take Valtrex as soon as I feel one starting. Valtrex completely eradicated the mouth ulcers as well as the cold sores. After two doses, I could see the mouth ulcers visibly retreating. It was like time-lapse photography. Every time I checked my mouth, they had shrunk a bit more. Within a few days there was nothing left of them. My oncologist was amazed and is going to bear it in mind.
I have not solved the vexing diarrhea problem. This is especially disconcerting when I go running. I’m experimenting with diet (not eating) but haven’t got to a satisfactory place yet.Fatigue is also a problem noted by many on this drug. I haven’t let myself take the time. I have been to five conferences in five different cities over the past six weeks. I also have another planned this weekend. My undergraduate students, thirty years younger than me, complain that just one conference is exhausting by the end of the second day. I don’t think they feel my urgency.
The absolute worst thing is that one never knows if the drug is working or you are suffering needlessly. A scan after two months showed that the two visible tumors on the liver has shrunk to 50% of the size they were. So I keep on and plan the next two months of my life living furiously. Scan, plan and repeat.