lymphedema blues

On Friday morning, I went to get fitted for a compression sleeve, because my left arm has been bothering me the past couple of months during runs.  The further I run, the stranger my left arm feels.  After a couple of miles, it feels heavy and tingly, with occasional shooting pains.  That feeling lasts for a few hours post-run.  I knew this was a warning sign for stage 1 lymphedema, because I went to a lymphedema seminar a few months ago, due to my increased risk.

For those that don’t know, lymphedema is caused by a blockage in your lymphatic system.  The system becomes unable to properly channel lymph fluid, which results in swelling of the limb. In my case, it affects my left arm, because I had 13 lymph nodes removed from my left axilla thanks to breast cancer. 

My surgeon performed a sentinel node biopsy during my bilateral mastectomy, and determined that all three sentinel nodes contained cancer cells.  Therefore, she recommended an axillary node dissection in which she would remove additional lymph nodes to look for cancer.  This would let them know if the cancer had potentially spread to other areas.  I was hesitant to let her do it because of the risk of lymphedema.   Some studies suggest that the axillary node dissection, while helpful for staging purposes, does not have any positive effect on survival.  Ultimately, I decided to do it, because i knew I would beat myself up if I didn’t.  It seems my fears have become a reality, and I have a (so far) very mild (running induced) case of lymphedema. 

I think the most frustrating part is how the doctors react.  None of mine seem to take lymphedema very seriously.  When discussing the possibility of it, all of them blew it off.  It’s very much an attitude of, “Who cares about that? Be glad to be alive. Suck it up, sweetheart." 

I purchased the compression sleeve, which is ugly and beige, and cost around $74.00.  I wore it yesterday for the first time, during a 7 mile run/walk.  It’s somewhat uncomfortable, since it has to be tight in order to do it’s job.  However, it worked well, and confirmed my fears that I do have lymphedema.  I know it’s not the worst thing in the world, but it’s just another gift from cancer, which seems to be the gift that keeps on giving. 

Now that I know I really do need to wear a compression sleeve while running, I’m going to go online and purchase some cuter sleeves.  I run a lot nowadays, and so I need a few.  If you find yourself needing a compression sleeve, I recommend you check out LympheDIVAs, which has a super cute selection.

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