In July 2011 Barbara Carlos was diagnosed with stage 3 breast cancer. A resident of Hawaii, she works in administrative support at a college and has retirement as her career goal. Music keeps her sane, as side effects of chemo and radiation linger. Overweight since childhood, she keeps trying to lose the estrogen-laden fat that her cancer loves.
Although I was aware of lymphedema, it wasn't really something on my radar screen, until I heard those words.
Somewhere in the haze of diagnosis, mastectomy and follow-up visits with the surgeon and oncologist, the subject of lymphedema was raised. It was a new concept for me, but a lot of things in Cancerland were new to me. A month after my surgery, I started chemo. I was also given an appointment with an occupational therapist regarding lymphedema.
My sister is an occupational therapist, so I asked her about it. It turns out that occupational therapy has many specialties. Neither lymphedema nor arms were in my sister's area of expertise, but she did explain a little bit about it.
When I met with the OT a few days later, lymphedema was explained in greater detail. I think in the previous month or so, I was still too overwhelmed to pay attention to anything I was told about it by doctors and nurses. The OT measured both my arms to have a baseline in case I developed any swelling. She also gave me exercises to do to, hopefully, alleviate any swelling in my arm or chest if it did develop. She didn't just give me a sheet of exercises, although I was sent home with the written directions and pictures. She also had me do them over and over as we spoke, making sure I learned them correctly. I left with instructions to practice them three times a day for a month. And I did. Lymph nodes had been removed during my surgery, and cancer was present in some of them. I am a good patient and wanted to do whatever I was told to get well and be well, so I mastered the exercises.
Time went on and there was never a sign of lymphedema. I forgot about it. I forgot about the exercises. Yes, I know lymphedema can develop at any time, even years after surgery. For some women it is a constant, complex, painful and difficult issue to deal with. For others, it flares up and goes away at its own pace. Some never experience it.
I was at an appointment at the oncology clinic and wasn't aware of anything being wrong. I didn't wear any rings, bracelets, watch or anything on the affected arm. In retrospect, I recalled that the skin had felt a little bit tight in the previous few days but I had so many other side effect issues that I barely noticed the tightness. It was just one of the many things I had to deal with. I live in Hawaii, so I usually wear short sleeves or sleeveless clothes.
When the nurse practitioner came in the room, she immediately noticed the swelling in my arm, said, "You have a little bit of lymphedema," and asked me about it. I stared at that arm and then at the other, clearly seeing the swelling now that it was pointed out to me. I was shocked. How could I be so unaware? Would it get worse? Would it ever get better or go away? What was to be done? How did this happen? What had I done wrong? I was frantic.
All nurses are angels in street clothes. Christa calmed my fears. Then we reviewed the symptoms and the exercises I had been given what seemed like ages before. For weeks, I did my lymphedema exercises each waking hour, sometimes multiple times an hour. After a week I thought I saw some progress, and over the next few days the progress was slow but steady on a daily basis. The swelling gradually subsided but my fear of a return was real.
A little bit of paranoia is good. Those of us who have done the cancer dance know that, and we recognize that our paranoia may be the thing that keeps us alive one day. I was fortunate in that someone who knew what to look for caught it before it got any worse. I was oblivious, and who knows how bad the lymphedema would have gotten before I noticed anything was wrong. Over time, my fears subsided, but I still find myself checking my arm throughout the day just to be sure there are no signs of swelling. It's one of the first things I do when I get up in the morning and one of the last things before I turn out the light. It's such an ingrained habit that I don't think I'll ever stop.
Last year I met a breast cancer patient who has some pretty snazzy compression sleeves, but you can still see the swelling in her arm and the discomfort it creates. I think she'd gladly turn in her sleeves and I wish I could do something to help. In these posts, other women have written of the challenges and difficulties they have with lymphedema, often on an ongoing basis. Maybe you know someone with lymphedema, or maybe it's been part of your experience. I realize my "little bit of lymphedema" was nothing compared to theirs, but it was more than enough to scare me and it gave me a deeper understanding of what others are going through when lymphedema is a constant companion.