A grumpy and grateful cancer survivor reflects on her neuropathy and lymphedema.
Barbara Tako is a breast cancer survivor (2010), melanoma survivor (2014) and author of Cancer Survivorship Coping Tools–We'll Get You Through This. She is a cancer coping advocate, speaker and published writer for television, radio and other venues across the country. She lives, survives, and thrives in Minnesota with her husband, children and dog. See more at www.cancersurvivorshipcopingtools.com,or www.clutterclearingchoices.com.
During and since chemotherapy to treat my breast cancer, a few of the toes on my right foot go numb, and sometimes a few fingers on either hand for a very short period of time. I think this is called peripheral neuropathy. Now at over five years out from diagnosis, this still happens. It isn’t a big deal. It doesn’t really affect my walking or the use of my handsn — I am lucky.
To top that off, every time I fly, because of lymphedema issues, I have a compression vest and compression arm sleeve to wear. They are hot and uncomfortable, and sometimes TSA doesn’t know what to make of them. They are reminders to me, singing “one of these is not like the others, one of these doesn’t belong” inside my head because this extra flying equipment makes me feel "different" and "not quite normal" when I would rather just be happy and excited about a trip. The neuropathy and lymphedema concerns, instead are reminders that trigger my fear of recurrence
every time something happens and remind me that I am a little different — and
I am lucky.
The neuropathy could certainly be worse, a lot worse. It is the reminder that I complain about. Yes, I had chemotherapy. Yes, I am fortunate to still be here over five years out. It is those many moments where I seem to stumble on reminders that I need to remain vigilant about a cancer recurrence that make me grateful and grumpy. I am grumpy that I see a vascular doctor yearly who monitors my neuropathy and lymphedema. I am fortunate to be closely monitored.
I am grumpy that I can’t donate a kidney. A friend needs one, but they won’t take mine because I had chemotherapy. I guess I am damaged goods. I don’t like how that feels and it is another reminder. There is an inability to help a friend in need. It is beyond frustrating. Most of the fear-of-recurrence reminders are internal, like my numb toes, but I ran up against this one out in the real world talking to the National Kidney Foundation. I wonder what else is out there.
I am a donor on my driver’s license. I am grumpy as I wonder what other body parts are no good? Tainted? Inferior now? I wouldn’t even know where to call to investigate this. I am not sure I really want to know. Except, I want to know what else is out there waiting for me? I like the Boy Scout motto — I want to "be prepared." Cancer blindsided me and I don’t want to get caught again any more than I must. Maybe there will be complications regarding treatment for other concerns as I age? If I need more chemotherapy down the road, will the neuropathy get worse? I don’t know. It is futile to spend time worrying about it, I guess ... and yet I wonder ...
I also am grateful. I spend time worrying about these possible surprises. I want to be prepared for surprises. When I look at it this way, I sound pretty darn silly. When this happens, I try to pull my thoughts back into the moment. Some deep breathing. A little focus on nature outside my window. A quiet prayer or moment of gratitude. There. That’s better — at least a little bit, for now.
For now, I am grateful to be here. I am grateful for each and every day — every moment, every interaction. Gratitude is an awesome emotion. It can be used to counteract grumpiness about lingering side effects. For now, we are here, and here is pretty darn good.