So, I had my lymphedema eval. And it did not go as I had hoped it would. My expectation would be that she would teach me some self massage/drainage techniques to use, perhaps order a compression sleeve that I would wear during certain times that are high risk for swelling (long travel, exercise, etc). Instead, she recommended 3 times a week this week and 3 times next week of coming in to see her for manual lymph drainage, which is basically very light pressure point massage in areas of lymph nodes to get the whole system moving more appropriately, along with wrapping. She applied the wrap yesterday, and by the end of the week will teach me to do it myself, so that I can continue over the weekends when I don’t see her. This picture, by the way, shows what she called a “light wrapping” to start me off with. LIGHT.
I have to keep it on 24/7, with the exception of removing it immediately before my appt with her so that she can measure the arm compared to my other arm, and perform the massage. It’s been just over 24 hours, and let me tell you, I’m loving life right now. Typing at work is interesting. So is cooking. Washing my hands. Doing basically anything. At least it’s not my dominant hand, but still. I was actually measuring a borderline difference between my two arms, as far as whether or not she would even recommend this “intense” treatment period or not at this stage. Since radiation also increases risk of lymphedema, and early treatment is so important in preventing it from becoming worse, we decided to go ahead with it. It will be about 2 weeks with the wrapping, and then I’ll “downgrade” to a compression sleeve that I’ll wear all day, every day, for an indeterminate amount of time. My very optimistic (not at all) PT tells me, this is just life now. That sometimes bodies reset after active cancer treatment is over, and manage the lymphedema well, but we won’t know that now, and the recommendations are that your best chance for preventing it from worsening is to wear a sleeve during the day. She went on to say, “Some women decide they don’t want to do that, and then they are just putting themselves at risk”. After talking with many women in the Facebook support group I’m a part of, it seems that almost nobody has to do this full time forever. They get it under control in a matter of weeks to a few months, then just wear the sleeve during high risk activity or if they notice a period of swelling happening. Occasionally having to revert back to the wrapping for a short time to manage it well again. If she continues to sing the same tune after this first phase of treatment has ended, I’ll seek out a second opinion. Yesterday, after she had me all wrapped up and was talking about how we’ll proceed, I just started crying. And in her ever positive and compassionate ways, she just kept talking, didn’t even offer me a tissue. Shout out to the awesome bedside manner, ma’am.
My last chemo treatment is on Monday. I have been looking forward to this for a very long time, but my excitement is now somewhat tempered by this lymphedema nonsense. I’m having a really hard time coping with it, beyond what I would have expected, and I think it’s that it’s just one more thing. And one more LIFELONG thing. Even if it goes away, and I am told that yes, I don’t have to wear a sleeve constantly, it’s something that I will forever need to be vigilant about, and will rear it’s head on and off for the rest of my life. Which….just sucks. It’s one more reminder that this will never be over. I think some friends and family are looking forward to treatment being done, excited for me, that this nightmare will pass and I can get back to normal life. But, unfortunately, that’s just not reality for people who go through this. Yes, treatment ends, and life gets better. But it’s not over. There are surgical results, left over side effects from the treatment, potential complications from that treatment, and the ever present fear of recurrence. There’s no all clear with breast cancer, no guarantees. You just have to do what you can and hope for the best, and that’s a hard pill to swallow. This whole “journey” is like death from a thousand paper cuts. It’s hard not to feel like things are constantly being piled onto the giant crap pile of stuff to deal with. One thing ends (chemo), another starts (lymphedema). I’m trying to hang in there and roll with it, but I can’t lie….this week bites.
If if anyone wants to read more info about lymphedema, this is a pretty good resource: http://www.breastcancer.org/treatment/lymphedema/ask_expert/2008_04