I'm sitting at Anisette with my husband, my wife (Nitasha) and my dear friend Michelle. I've wanted to eat there for weeks. I want to eat everything on the menu. It's full of cancer fighting dishes like lobster bisque, steak frites and cheese. As I'm enjoying my onion soup and enviously eying the forbidden oysters on the table, I notice that my left hand and forearm are incredibly swollen. I had noticed some swelling after my first yoga practice in weeks, but thought it would go away. After all, it was a fraction of what I used to do. Suddenly, my soup isn't so delicious and I'm just sad. I can't believe I might have lymphedema. It affects such a small number of women (I've been told around 1%). The worst part is that there's really nothing I can do. My physical therapist says we just "watch it." I don't like watching things and waiting for them to get worse. I'm proactive and want to do something to fix it. Immediately. Sadder though, is that if I can't even make it into the 99% side of the statistic, why on earth should I have any hope of making it into the 60% of not dying? It seems inevitable as I can't catch a break. I've always hated numbers.
The next morning I'm discussing this with my therapist. She has lymphedema and we have matching compression sleeves. She wants to know if I had any swelling prior to wearing my sleeve. I didn't. She doesn't understand why I've been told to wear one. "I'm not a specialist," she says, "but I do know that many people don't react well to wearing the sleeve." And she's never heard of wearing one prophylactically. "If I were you," she continues, "I'd take it off now and see if the swelling goes down over the next few days." I can't get it off my arm fast enough. I feel much better after my session (not just because I'm hopeful about my arm/hand sans sleeve) but because she gives me some really helpful advice about how to focus on the positive. She agrees that I could be hopelessly unlucky and there are no guarantees that I won't die. But, another possible outcome to death is that I could be the poster child for pregnant women with cancer. I could live a long and fulfilling life watching my healthy children grow up. Why not add that to my thought process?
Although acupuncture and my therapy session were supposed to be my only doctor's appointments for the week, I should have known that something scary or rare or wrong would come up. Last week I had noticed a small, pea-sized lump just above my elbow in my left arm. My physical therapist wasn't sure what it was and suggested I see Dr. Funk. One of my closest friends, Cass, who is beyond remarkable, (I could actually write a book on how unbelievably amazing all of my friends are), comes with me. I'm so glad she's there because otherwise people might think I'm overly dramatic or taking artistic license when relaying what Dr. Funk says. Dr. Funk feels the lump and looks at it under ultrasound. "It's weird," she says. "I've never seen anything like it before." "Of course you haven't," I say. I ask if it could kill me and she's certain it can't. "It's fluid. Blood or lymph," she says. I ask her again if she's sure it's not cancer and remind her that she didn't think my cancer looked like cancer. "Cancer has shades of grey," she explains. Blood...not so much. She'd take a sample just because she's curious - but given what's going on with my arm, she doesn't think it's a good idea. My lord. So I'm to watch that, too.
The rest of my week is uneventful (finally!) and my arm does in fact get better without the sleeve...for a short while. After 3 days of not feeling swollen, my left arm starts to feel heavy which is a sign of lymph node problems (it's hard to describe the feeling but anyone who may be struggling with lymphedema will know exactly what I mean). I know my physical therapist would tell me to put on the sleeve, but now I'm scared it will make things worse. So I don't know what to do. I leave a message for a lymphedema specialist. And I wait.