One person CAN make a difference

First, though, let’s talk about lymphedema because it’s actually a pretty common side effect of mastectomy and it’s not one most people are aware of — or prepared for. The lymphatic system is part of the immune system. It works to keep the fluid balanced in various parts of your body and to remove excess fluid and also to filter junk out of your system. Most people are familiar with the lymph nodes in the neck and under the jawline because these can swell when you get sick. But there are clusters of lymph nodes in many places in the body, including under your arms, in your groin, and running down the midline of your body. During a mastectomy, they take out some number of lymph nodes for testing so they can see whether the cancer has started to spread. Radiation can destroy lymph nodes and cause scar tissue that impedes the lymphatic system as well. I only lost a few nodes, but I have met women who had a dozen or more lymph nodes removed.

Obviously, fewer lymph nodes means a less efficient system and so when you’ve had nodes removed or damaged during breast cancer treatment, the system can get backed up and excess lymphatic fluid can settle in the tissue of your arm, chest, or even neck. The biggest indicator is swelling, which can be mild to quite severe. But also the area affected by the lymphedema can get infected and the skin can develop sores or get sort of leathery. It can all be very painful too. Some people get minor lymphedema right after surgery or just a few weeks later, and often those types will go away on their own. But it’s actually most common for lymphedema to set in a year and a half to two years after treatment – and that kind does not go away on its own. For that matter, once you have had lymph nodes removed or destroyed, you will be susceptible to lymphedema in that area for the rest of your life. It can literally set in years after cancer treatment.

You’re also at a higher degree of risk for infection on the side on which the lymph nodes were removed or destroyed. As a result, the doctors tell you to avoid having blood draws or blood pressure checks on that side. In many medical settings, they flat out will not use that arm come hell or high water because of the increased risk of infection and the risk of kicking off lymphedema. For me, this is a royal pain in the behind, because I was already such a tough stick when it comes to things like IVs and blood draws. Beginning with my mastectomy, they did not touch my right arm… all the way through those six surgeries, plus a colonoscopy, plus all the extensive bloodwork that goes with the territory. When I was in the hospital with the abscess and we were struggling to get an IV to hold or to get any blood because I was so badly dehydrated, they would have gone into my neck or other parts of my body before they would have risked going into my right arm. That’s how seriously they take this – and with good reason.

Now, I want to say again how lucky I was to have the plastic surgeon I had. I’ve talked to very few survivors whose doctors sent them to physical therapy for range of motion and weakness instead of just telling them they’d get used to it or to just wait it out. The movements my PT taught me helped me not only throughout the mastectomy–expansion–exchange process, but also later after I had my DIEP flap. In fact, I still do them today when my pecs start bothering me as, regrettably, they often do. Plus, when she found out I was going in to have my ovaries removed, she also taught me some techniques for getting up and around that served me well both then and after the DIEP.

So yeah. Lymphedema sucks. Awesome surgeon. Awesome PT. So now let me just tell you just how awesome she is. For the sake of privacy I’m going to call her “S”.

S is about my age, maybe a few years older, and when she came to Georgia more than 20 years ago, she was not only a trained physical therapist, but also a lymphedema specialist. At the time, there were none of the latter in middle Georgia. When she first came to the hospital, she wanted to start offering lymphedema therapy and lymphatic drainage massage, and they told her there was no need – even though she kept seeing breast cancer patients come through who struggled with the problem. She brought it up periodically, but the powers that be wanted her to stick to basics. Well, a few years went by and then one of the most talented and popular surgeons at the hospital was diagnosed with breast cancer. After mastectomy, she ended up with such severe lymphedema in one arm that it swelled to almost twice the size of the other. Obviously this was painful and uncomfortable and difficult to deal with, but also she wasn’t able to operate and it could have resulted in her losing her entire career because, as I said, that kind of severe lymphedema doesn’t go away on its own.

Someone at the hospital remembered that S was specially trained to deal with exactly what the surgeon was going through and the administration came to her and asked if she would treat this surgeon. S saw her opening, and she said no — unless, that is, they agreed to fund and support the lymphedema services she had wanted to start on her arrival. If they didn’t like it, she said, they could fire her. But she was not going to be part of giving special treatment to doctors that the hospital would not provide for area patients in need. And that, friends, is how middle Georgia got its first lymphedema clinic.

How badass is that? Like how utterly amazing is she for leveraging the opportunity to make people’s lives better? That, in my book, is a hero.

The thing is, the breast cancer world has lots and lots of local heroes who don’t make the news and aren’t celebrated on the national stage, and whose name most people never know, but who are making a difference every single day at the local and regional levels. These are funding heroes and healthcare heroes and small nonprofits and people who run support groups and a host of other seemingly small, individual contributors. I’ve been lucky enough to meet several of them and hear about even more, and what I’ve come to realize is that it’s those local heroes who keep us all going. They’re the ones who are making the journey easier day-in and day-out. They’re the ones who keep hope alive.

No matter who you are or what your life looks like or how little influence you think you have, never underestimate the incredible power you hold to make other people’s lives easier – and with it the world a little better. Never underestimate how much we can accomplish together if each of us does just what we can do.