One more thing they don't tell you...

So there is this dirty little secret in the mastectomy world. Its called lymphedema and it's what can happen when some or all of your lymph nodes are removed or damaged by radiation or chemo. More info is available now ha here used to be, but it's surprising how little you hear until you are in it. I'm no biologist, but I think it works something like this: The heart pumps blood through the blood vessels out into the limbs and back again. As it flows back and forth, about 20 liters a day (20 liters...think 20 bottles of seltzer!) of fluid (plasma) leaks out into the interstitial fluid soup in the body. There it does many important things, like delivering oxygen to organs. Then about 17 liters get reabsorbed into the blood. In case you didn't notice, this leaves 3 liters that didn't get reabsorbed. That's because every day, about 3 liters end up rerouted and cleaned by the lymph system. The lymph system is a bunch of tiny tubes that run just under the skin and flow only towards the heart. They connect to nodes under the arm, groin, neck, etc. that act like filters, killing foreign cells and reabsorbing proteins before dumping the "clean" fluid back into two big veins in the neck area. While it's in the lymph vessels, the fluid is called "lymph", just to be confusing. Mostly, it's all water with stuff dissolved in it that flows around and around. This is why it's bad when cancer gets into the lymph system. It's all connected! So this is all a wonderful and delicately balanced system. When we remove a big section of lymph nodes in the armpit, it means that the blood vessels are still bringing fluid down the arm, and leaving a portion of it to be brought back by the lymph system. But the main filter/infection fighting depots are gone. So the lymph has to find another route, and it can easily back up, causing painful and ugly swelling of the arm. Aren't you glad you know about this? I am not. My left arm has moderate lymphedema. It's hard to see if you aren't looking for it (for which I'm grateful,) but it feels uncomfortable and I know it's a chronic condition I have to manage for the rest of my life. This means, at the moment, daily treatment for two weeks at 7:30 am. Treatment consists of special drainage massage, compression pump and exercises, then encasing the arm in a tight elasticized sleeve during the day and another thingie at night. With luck, this will get the swelling down and I'll just be able to wear the sleeve to exercise and on airplanes. Its not a big thing. But it feels odd, after such a healthy life, to have this thing to worry about. It makes me feel old! I've taken off my wedding band for good, have to wear gloves for gardening or working on the house, and never let a manicurist cut my cuticles! This is because healing is compromised and can also cause more fluid buildup. Hey, I'm not complaining about a relatively minor addition to the tab for staying alive. But this side effect is really downplayed in discussing mastectomy. The people who got me motivated to seek treatment were Carol and Kay, two friends of my mom and breast cancer survivors. They warned me that I'd have to address this myself and to take it seriously to keep it from getting out of hand. I feel empowered to be taking care of myself in this way, and grateful for my own personal set of Wise Women standing guard for me. Other than this annoyance, I am feeling great, lifting weights with my LiveSTRONG class at the Y, walking every day, eating well and losing weight. I finished my prednisone taper and am officially drug free! In two days, I meet with the radiation oncologist (managed to get that appointment moved up a bit) and think that radiation will start within a few weeks. I have decided to embrace my inner warrior in thinking about radiation. Six weeks is not a long time. Sore and blistered skin, fatigue, nausea...been there, done that! Bring it on!