Missy Diggs

In my dream world, no one would ever get cancer.

In my next-best dream world, those of us who do get cancer would breeze right through treatment (which would be 100% effective) and would then get right back to normal.

In this world, though, cancer strikes all kinds of people it should really leave alone and the treatments are not too breezy.  For me, I would not say that the treatment is worse than the disease, because if I had declined the treatment there is just about a 1% chance that I would even be here to complain about it. But I will say that it has not been very much fun (despite my determination to make this the Most. Fun. Cancer. EVER!). And getting back to normal, well…. that’s actually never going to happen. In cancer circles they often refer to the time after treatment as the “new normal” but I’m pretty sure I’m not even there yet.

Obviously cancer treatment has all kinds of side effects… some that show up right away, some that take some time to appear, and some that just linger as a possibility to keep you on your toes. Some of these side effects are too small to complain about, some are temporary, and some are permanent and a real pain in the ass. (One of the most annoying “side” effects of some cancer treatments: CANCER!) For the past few months, I’ve been struggling with lymphedema, a permanent and extremely annoying result of having lymph nodes and lymphatic tissues removed by surgery and/or damaged by radiation.

When I had my surgery, I was less upset about losing my breasts than about losing my lymph nodes. I mean, yeah, they had cancer in them, but I was still using them! But the cancer was using them too, to spread itself throughout my entire body, and so obviously they had to go. A month or so after the surgery I noticed that my right arm (aka “the affected arm”) was achy and tingly and puffy-feeling in a way my left arm was not. A local lymphedema therapist diagnosed me and gave me some tips, and when I was in Houston for radiation I saw the PTs at MD Anderson almost every day of my treatment for massage and teaching. I also got a compression sleeve and gauntlet to wear on my right arm, though the PTs there didn’t think I needed to wear them all the time, just whenever I seemed to need them.

As time went on, I still had problems and so I went to see a lymphedema specialist here in Austin. She told me to wear the sleeve and gauntlet every day, which I now do, and it helps. I was starting to feel like I needed to wear it at night, too, so she taught me how to wrap my right arm in short-stretch bandages every night before bed. It makes me look like the Michelin Mom, but I feel better when I do it, so I do it. I also have a lymphatic drainage massage that I am supposed to do at least twice every day, and a set of arm-flapping exercises, also twice a day, and as long as I do all these things and don’t do too much repetitive motion or heavy lifting my arm is okay. The sleeve/gauntlet thing is not attractive, and even though it’s supposed to be discreet because it’s flesh-colored it generally causes people to ask questions or to be afraid to shake my hand lest they hurt me. So it’s a little intrusive and it’s high-maintenance but it’s not so bad.

Meanwhile, though, the right side of my chest and the area under my arm on the right side has been achy, puffy, tender, and all that jazz. Well, guess what? you can get lymphedema there too, though this fact is not uniformly recognized by the medical community. It’s called truncal lymphedema, and learning how to deal with it has become somewhat all-consuming for me over the past three months. One of the complications of lymphedema (or side effects of this side effect, if you will) is that it decreases your body’s ability to fight off infections…. because my lymph nodes are gone and my lymphatic system is damaged, there’s a tendency for lymph to stagnate, basically, and infections love stuff like that. At first, we were hoping the massage/exercise routine would be enough to keep the truncal lymphedema under control, but then I got an infection in my right axilla (armpit) and chest wall that put me in the hospital for two weeks and we realized we were going to have to step it up to keep things under control.

So now I’m on long-term antibiotics, and I have a relationship with a professional “fitter” who works at a medical supply boutique and sells people like me stuff like this:

There is a bra-type thing that works for this but initially the fitter thought that the bra only provided the correct compression when used with prostheses. I was pretty irritated by the idea that I would have to wear a bra after all, and totally enraged that I would then “have” to wear prosthetic breasts –not because I wanted to, but because the therapeutic garment wouldn’t work properly without them– so I chose to go with a custom-made “vest” instead. Until the vest came, I went out and bought some stretchy “support” undergarments (also called “body shapers”) which actually helped a lot. Then the vest came in. It’s thick cotton beige material, with a huge zipper up the front (but first you have to fasten the hooks and eyes). It covers me from collar bone to hip bone, and from shoulder to shoulder. It makes me look like I just escaped from a sanitarium, and I cried for a couple of hours the night I first brought it home.

When I wear it, it helps a lot. More than anything else I’ve tried. But it’s hot (OMG IT IS SO HOT!) and I live in Texas. I literally have ONE SHIRT that I can wear that will actually cover the thing, and it is institutional in its ugliness (OMG IT IS SO UGLY!). And while I am grateful for the help I get from this thing, I am made acutely miserable by having to wear it.

Someone on one of my message boards pointed out that there are more garments available for people who “support” breast cancer (think pink!) than for people who have actually HAD breast cancer. I think this is shameful. I also recently read a study that showed that there is a much higher unemployment rate among cancer survivors than among the general public, especially among women, and especially among women who had had breast, uterine, or ovarian cancer. I think this is highly suspicious. My crazy brain is telling me that if elite athletes needed garments to provide compression someone would design something much more stylish than what has been designed for me, and I think that something needs to be done about that.

So that’s what’s been going on with me lately. I’m wearing my vest as much as I can stand to, coming up with alternatives for days when I can’t (say, because I’m taking my kid to an outdoor concert at SXSW or because I washed it and it takes more than a day to dry), and actively pursuing Plan B.

Because I am going to be dealing with this for the rest of my life. And there has got to be a better way.