Prevention

***I’ve had this post ready to go since around Thanksgiving.  I’ve been waiting on some compression garments to arrive so I could share pics.  I think they must be getting brought over from Mongolia by yak, because 2 months later, they still aren’t here.  Hence, I’m posting senza pics!****

Way back in March, I was debating which surgery was going to be the best option for me.  You may recall that when a breast is removed, the standard of practice is to also remove all of the lymph nodes in the armpit.  Doing so greatly increases the chance of getting lymphedema.  (I’ll define lymphedma in a minute.)  You may also recall that I opted to not have any more nodes removed and to go with axillary radiation instead.  Now this is a case of me not being as informed as I should have been.  While I knew that radiation could also cause lymphedema, I didn’t think about the fact that radiation would also cause my muscles to become stiff, thus limiting my mobility.  My only thought was that radiation had a lower chance of causing lymphedema than surgery.  If I had to do it over again, I think I might have had all of the nodes removed.  Maybe.  It’s water under the bridge now.

Anyway, so during radiation, I had to do these stretching exercises 3 times a day to make sure that the muscles didn’t get too shortened.  I’m not exactly sure of the mechanism, but I believe the muscle fibers are effectively burned during radiation.  If you think about what happens to your skin when it’s burned, it gets tighter, right?  Same thing happens to any part of your body that gets radiation: the skin, the muscles and the lymphatic vessels.  So in order to keep the muscles from shortening, I stretched them out every single day during radiation.  For some reason, I thought I didn’t need to continue doing the stretches once the radiation ended.  As it turns out, the radiation continues to affect your body long after the actual doses have ended.  So now I have this one little muscle in my armpit that is very tight.  I didn’t realize this until I met with the physical therapist in the lymphedema clinic.  I guess this would be a good time to talk about lymphedema.

Lymphedema is a condition where your lymphatic system is unable to drain all of the excess fluid in the body due to a) the fact that many of the nodes have been removed or b) the fact that the lymphatic vessels have been damaged during radiation.  This excess fluid then gets backed up in a person’s arm and causes the arm to be swollen, in some cases, extremely swollen.  There is no cure for lymphedema.  Once you have it, you’ll always have it.  Fortunately, the condition can definitely be managed and you can get it under control.  Even better news is that one can take steps to make sure they don’t get lymphedema.  This is the reason I went to the lymphedema clinic, to learn preventative measures.

Her first step was to feel the area to see what was going on. When she was palpating the armpit area, I thought my skin was going to rip right open. Yikes!  So painful!  I was thinking that my skin was damaged from the radiation.  (Remember the charred armpit?)  Imagine my surprise when she said the pain came from a very tight muscle!  I’m now doing stretching exercises every day to whip that muscle back into shape.  It’s definitely better, but still not great! While she was palpating, she kept marveling at how great my skin looked.  I sort of thought she was nuts, because to me, my skin has all sorts of issues.  When she told me that many people come in after radiation with skin that looks reptilian and leather, I realized that it’s all about perspective.  I’ll take my scarred and tanned skin over the leather version any day!

After palpating, she took very detailed measurements of both arms and fingers.  She measured around each knuckle, both wrists, and then every few inches along my arm.  The idea was to have a baseline of measurements so that in the future, if there is a suspicion of swelling, we would have a point of comparison.

Step three was to teach me how to massage the lymphatic system.  This is not the same kind of massage that you get when your muscles are sore or to just feel good.  It’s a very gentle, circular motion, with the idea being that you are helping the fluid move through the system.  I do this massage 3ish times a week, or anytime I feel like I’ve worked my left arm too hard.

This leads me to step four, which was teaching me how to avoid getting lymphedema.  Because the lymph system on my left side is now compromised, I have to be very careful when doing anything with that arm.  So if I’m gardening, I for sure have to wear gloves to protect against nicks and cuts.  I also need to ensure I don’t end up with a hang nail.  Whenever you get a cut or any sort of breach, your lymph system has to work harder to filter out any of the germs that have entered in.  Making an already taxed system work harder isn’t really part of the anti-lymphedema plan.  If I’m going to be doing any motions that are repetitive (think exercising, raking, running, etc.) or strenuous (weight lifting, rowing, etc.), I have to wear a compression sleeve.  It’s fits quite snugly and is a bit of a trick to get it on.  When you do repetitive or strenuous motions, your body moves more blood volume through.  Now that you are getting to be a pro at how the lymphatic system works, you can guess that this extra blood volume is a challenge for a diminished lymph system.  This is where the sleeve comes in.  The extra compression provides pressure from the outside, which then helps the fluid to move through as there is extra force being applied.  Think of a balloon.  You blow it up, then let the air out.  Now, blow it up, but this time, squeeze the balloon as the air is going out.  The air goes out more quickly and with more force, right?  Same idea with the sleeve.

The biggest challenge for me has been sorting out what exercises I can and can’t do.  Pushups, pec flies, planks and bench presses all require extra care.  It’s hard to explain, but if you were inside my body, you’d definitely feel the difference between the left and right sides.  The right side could plank all the live long day.  Not so much with the left side …. it just feels weird.  So I spend a fair amount of time modifying exercises for the left arm.  I’m the crazy woman at the gym who has weight on one side of the bar but not the other.  Eh, you do what you gotta do, right?  Eventually, I hope to get the left side stronger so it can do more, but I have to build it up VERY slowly.  And, if I happen to take a break, even for 3 or 4 days, I have to start over from the beginning.  I guess that’s good motivation to keep on exercising!

So for the time being, I don’t have lymphedema, and I intend to keep it that way.  Don’t be surprised when you see me wearing my stylin’ sleeve or if you see me standing with my left arm in a weird position.  That’s just me stretching it out and doing my part to ward off the swelling!