One of the possible side effects of a sentinel node dissection and the removal of underarm lymph nodes can be a condition called lymphedema. Go to Mary’s Breast Cancer Blog for March to read my blog entry on this adventure. Find here my graphic account…I got my hand wrong—I’m right-handed, not left—but hey, you get the idea!
I’m still working on the name for my graphic blogs, as well as a particular style. But it’s fun! You can email me any suggestions.
Click on the image to enlarge my illustrated version.
Yesterday morning I was persuaded by the nurse, who measured both my arms and found them to be exactly the same, that I did not have lymphedema. This was followed by a long visit with the doctor who convinced me that my risk of getting lymphedema is something like three or four percent. So not only was I convinced on both counts–that I didn’t have it and that I likely wouldn’t get it–I was also impressed with my thoughtful, cutting-edge (so to speak), and careful treatment. So I agreed to get zapped after all. Today was Day 7 out of 33.
But it was no surprise that I freaked out at the first sign. I’ve been getting double messages on the subject of lymphedema. During my first visit I was handed an article that warned of more ways to get lymphedema than you could shake a stick at, my grandma would have said. Even a hang nail could set me up with a fat arm for life! How could I not panic? I’ve been without my right arm function for as long as a year and it is, for me, as painter, writer, and college English teacher, a special place in hell.
Despite the many ways to get lymphedema, including showering in water too hot or too cold, washing dishes, touching a hot pot, insect bite, small cut or scrape, apparently only a small percentage of breast cancer patients ever get it. If we are so vulnerable, how come more of us aren’t running around with a fat arm?
It’s all a balance act: Being unusually careful of my arm but not worrying too much; allowing myself to grieve my losses while aware that most patients at my treatment center are facing worse; being grateful for caring people while forgiving them things they say or don’t say that irritate me–I can be so self-absorbed that I don’t always find out what’s happening with them. Life is beginning to resemble those computer games my son used to love so much–there are many levels of difficulty.
I was told that there’s only a one chance in ten that I’d get lymphedema, but here again, I’m not doing so well with the odds. I wonder what the odds are that I’d get invasive breast cancer (one in seven) AND suffer lymphedema (one in ten after surgery plus radiation)?
I’d been doing just fine, but suddenly, I’m very upset. I can’t risk permanent lymphedema because I make my living with that arm. I may decide to quit radiation if I find that my nodes are being radiated. I had no cancer in my nodes and did not give permission to have them radiated. So today I’m skipping treatment and going to physical therapy and seeing both my radiation oncologist and my surgeon.
It turns out that the hardest thing about serious illness is not just dealing with pain, loss, or even the threat of death, but the decisions that come up, often without warning, many of which are not much different than betting on odds, or deciding between the risk of one bad thing against the risk of another. Which bad thing would I hate most? What are the odds of that happening given my present treatment?
Things can change, for better or worse, on a dime. One minute I’m not in the woods, the next I’m not out of the woods.
About the picture: Here’s “She’s So Brave” after I scrubbed off all the paint layers. I’m feeling kind of raw right now, so I’ve left it that way.