This piece was originally published in Agony and Absurdity: Adventures in Cancerland: Young Women and Breast Cancer, An Anthology. The author, Alexandra Fraser, is a Breast Cancer Action and BAYS member who supports the passage of the Lymphedema Treatment Act.Thanks to a new House rule, we have an opportunity for a guaranteed vote if the Lymphedema Treatment Act gets 290 cosponsors. Last year, we reached 385 House cosponsors and we’re halfway to having the number we need this year. To tell your legislators to join as a cosponsor, click here.
By Alexandra Fraser, Breast Cancer Action and BAYS member
“How do you spell ‘cancer,’ mommy?” inquired my three-year-old son, Stanley. I asked him if he even knows what cancer is, and he says he doesn’t. But, a week later, the two of us were eating ice cream in a fancy waterfront restaurant when Stanley abruptly burst into tears. Sobbing, he said, “I afraid you going to die, Mommy.” I held him in my lap at the table, and we wept together until our waiter, looking alarmed, brought the check.
Stanley shouldn’t know what cancer is. Sure, I had it—breast cancer, Stage IIB—and all the barbaric treatments that go along with it. Surgery, chemo, radiation and hormone therapy saved my life. However, friends attributed my survival to determination, a positive outlook, and adoption of complementary treatments like juicing and acupuncture. After some doctors told me that chemo would leave me infertile, I even had a healthy baby without fertility assistance. I emerged from cancer triumphant. Friends and colleagues lauded me like a hero, and I let them. But, all of that was more than twice Stanley’s lifetime ago, eight years in the distant past. And, indeed, Stanley wouldn’t know what cancer is if it weren’t for the lymphedema in my frighteningly-swollen left arm, perpetually wrapped in a giant compression cast.
Years after my cancer treatments were behind me and Stanley was toddling around, my forearm and hand unexpectedly swelled over a few days, to a 50% increase in size. My oncologist ordered a round of diagnostic scans. He framed it as, “looking for a resolution to the swelling.” Not until he called me with the results did I realize that he was testing me for a cancer recurrence. He was audibly relieved when he shared that my scans were clear. We went on to discuss next steps, and my stomach sank as I realized that the doctor who saved my life had nothing in his medical toolbox to reverse the swelling. “Compression and physical therapy are the standard of care. There is no cure,” he reported. As I discussed my scans and new treatments with family and close friends, we relived my entire cancer history within earshot of little Stanley. He asked to see where the doctors cut me open. I could not feel where his little hand traced the scar: the nerves are gone there, leaving a numbness.
Every morning before work, my husband wrapped the compression cast around my arm while Stanley ate breakfast and watched this thirty-minute routine. First, a gauze stocking was carefully rolled over my lotioned skin. Then came layers of batting in a spiral, first one direction and then the other. My fingers received an intricate lacing of gauze that wove across the back of my hand, preventing the compression cast from driving fluid into my fingers. My husband, a former bicycle mechanic, joked that it was “just like wrapping handlebar tape.” His tension and spacing was even and regular, as he wound the flesh colored short-stretch compression bandages in opposing upward spirals, creating a herringbone effect. The end-product of the wrapping job immobilized my elbow and was about the diameter of our breakfast plates. I was unable to wear shirts, jackets, or any clothing with sleeves. Sleeveless tops and ponchos became my new uniform.
At my physical therapist’s urging, I tried wearing the compression cast round-the-clock. This caused my skin to develop sores, and the swelling to increase again. Each time I slept in the cast, I woke up, repeatedly, with my heart pumping in my ears. In my nightmares, I was being buried alive. I stopped sleeping in the cast, but then, my arm was more swollen each morning. Every evening at bedtime, we spent twenty minutes just rolling the bandages back into little tubes, tucking them away for the night. Stanley always helped by rolling one or two into a tangled ball. I re-rolled them after he was asleep. When our little family went out to eat Ethiopian, Stanley called the rolls of spongy injera bread “bandage bread.”
Stanley also accompanied me to many of my twice-weekly physical therapy appointments. He was always quiet and polite while the therapist tried to break up the scar tissue and fibrosis that runs from my ribs, through my armpit, down to my wrist. She used her thumbs to push the fluids lodged in my arm back into my torso. When I dropped Stanley off at pre-school in my giant cast, he motioned in my direction and explained to his playmates “My mommy got a water arm!” He seemed at ease with my abnormality, and I marveled at the resilience of young children.
A few months into this routine, Stanley was alone with my husband when he broke down again. “Mommy not getting any better. We help and help, Daddy, and her water arm not better.” They cried together.
At work, my colleagues assumed the cast was a result of a skiing or cycling accident. I tried to gloss over the cause of my cast and my frequent work absences for scans and physical therapy. My scientist and engineer coworkers were not satisfied with my vague explanation of a mysterious swelling. When I awkwardly explained that it is a latent side effect of cancer treatment, these smart folks, so used to solving problems, tried to solve my lymphedema. I had the same ridiculous conversations over and over again:
“How much longer?” “You mean in the cast? Or, until it’s better? Oh. Well, it’s considered chronic, incurable. A managed condition.”
“It’s called lymphedema. It’s a swelling of the lymphatic system.”
“No. It’s not a new cancer. You might be thinking of lymphoma.”
“Actually, it isn’t that rare. About thirty percent of cancer patients get it. Usually it’s happens to much older people. Lots of people here at work have moms who have it. Like Jon, and Barbara, and Lou.”
“Yeah. Their moms are all in their seventies and eighties.”
“Oh, well I wish it were my right arm instead, actually. See, I’m left handed.”
“No, there’s no medication for it. There are some experimental surgeries, but they aren’t widely available.”
“No. They can’t just take out the fluid with a syringe. It’s not localized fluid, plus the damage from the needle would only increase the swelling.”
“No. My doctor hasn’t asked me to keep it elevated. It just doesn’t do much.”
“Yes. It’s painful. It throbs. Sometimes, it feels like the skin will split open. The pressure inside makes my fingers go numb.”
“Well, actually, when the pain gets better, it means the tissue damage has become permanent.”
“You are right. At least it isn’t cancer.”
After four months of bandaging, my lymphedema therapist announced that I could enter the maintenance phase. My left arm is still one-third larger than the right, and I cannot wear most long sleeve garments. I still need weekly physical therapy. The fabric on the over-the-counter compression sleeves buckled and chafed the skin, causing a rash that makes the swelling worse. I met with a medical device fitter. For $1200, I bought something called a “night garment.” It is custom-made and looks like a shoulder-length oven mitt. I also got a made-to-measure sleeve and glove in nude, at $500 a set. They were made in Germany and came with my surname printed inside and a personal note from someone named Hulya, who inspected them. My Cadillac PPO health policy says that none of it is covered by insurance because “compression hosiery” are “personal items.” I will need a new glove and sleeve every three months, for life. I tried to calculate the lifetime cost, and thought of college for Stanley. Even with daily hand-washing, the sleeve and glove quickly became grimy and stained from pencil, ink, riding the bus, cooking, and hanging out with a preschooler. Within a month, I also bought a black on black set. Stanley was delighted, “Mommy, now you Darth Mommy.” I reached after him with my black hand, making breathing sounds, “Stanley….I am your mother. Join me and together we will rule the universe!”
Often, while I am doing my home exercises for lymphedema, my mind plays a running list: Things I Could Have Done Differently to Keep from Getting LYMPHEDEMA. I should not have worked such long hours. I should not have gotten so stressed out. I should have lost the baby weight after Stanley. I should have eaten better. I should have drank less beer. I should not have tried to be a weekend warrior when I was so out of shape, overwhelming my lymphatic system. I should have said “no” to that second lymph node surgery during treatment, when I thought a hardened little lump in my underarm was a new cancer. When my left implant failed after radiation, I should not have worked with that overly-aggressive surgeon who widened my reconstruction incision into my armpit. Now, when I lie down, the whole implant rolls into my underarm, leaving my breast a hollow cavity and blocking any circulation in my underarm.
So many things could have been the culprit that led to my lymph fluid pressure exceeding the threshold in my arm, causing damage to nodes and vessels and resulting in a backup of lymph fluid that further damaged nodes and vessels, causing more backup of lymph fluids and creating the chain reaction that is lymphedema. I try to quiet my mind from the running list by laying it quietly next to its companion, another list that lies mostly dormant nowadays: Things I Could Have Done Differently to Keep from Getting CANCER. Stanley wanders by while I am stretching and stroking my arm. Suddenly, he asks, “When can I have a baby sister?” It is my turn to burst into tears. The acute flare-up of lymphedema was, most likely, caused by the hormonal crash that followed the miscarriage of my second pregnancy. The dramatic and sudden swelling came only a few days after I lost the baby at eight weeks. Losing a baby and gaining a ruined arm sometimes feels like bad luck, and other times, like I was too greedy, wanting a second child after cancer.
Once, I tried going half a day without the compression sleeve. It took three weeks to calm the resulting flare-up. I love cooking elaborate dishes for friends and family, which requires going a couple of hours without the glove. Afterward, my hand looks like a baby’s hand: dimples where the knuckles should be, puffy, no definition of veins or tendons. Even with my compression garments on, each day I feel the sensation of my arm growing tight and slowly filling with fluid. Not only is lymphedema incurable and requiring constant maintenance, but it is also progressive. Any minute damage to the skin—a slip of the knife, an oven burn, bug bite, sunburn, paper cut, or rough cuticle—can become the incident that triggers a new flare-up, another permanent enlargement, or the dreaded cystitis, an infection that can lead to amputation or death.
No longer the hero who triumphantly beat cancer, I am now visibly maimed by it. Just as I fear a cancer recurrence, I fear that, to have saved my life from cancer, I must live without the enjoyable use of my arm. By trying to give Stanley a sibling, have I made myself less of a mother? How will I teach him to camp and hike when a bout of poison oak for me could end in amputation? Will I ever be able to take him backpacking? He’ll never remember me before lymphedema, when I was strong and unafraid to play in the wild. Now I wear my fears on my sleeve.
Read the Alexandra’s original blog post for Breast Cancer Action about Why We Need to Pass the Lymphedema Treatment Act