Right now, I’m sitting in the heat, with this hot computer on my lap, and every fan in the house aimed at me while I try to type with just my left hand. My right hand is out of commission and elevated on a pile of pillows.
This scenario is not conducive to getting much writing done – or to adequately being there for the 6-year-old. On days like this, I’m the yell-at-the-kid-from-the-couch mom, rather than the walk-across-the-room-and-address-the-situation-appropriately mom.
The heat doesn’t help with that either.
Nor does the pain.
What’s Going on with My Arm?
It’s recovering from my second bout of cellulitis this summer. Cellulitis is a skin infection that can be life threatening; it also puts me out of commission for a few days with a high fever, exhaustion, chills, and extreme bone and joint pain throughout my body, as well as the pain in my arm. It usually requires a run to the Emergency Room, and overnight or two at the hospital for IV meds.
The cellulitis is a complication of a complication of breast cancer. The cancer got into the lymph nodes, the lymph nodes were removed, I developed lymphedema, and ocassionally develop cellulitis infections from the lymphedema – a few of the many lasting gifts of cancer.
The cellulitis is an acute infection that can be treated with antibiotics; there is no cure for the lymphedema. But there are treatments that are helpful. I would be lost without my physical therapists, and their massages are crucial to helping maintain circulation. Additionally, they taught my husband some of the massage techniques so he can provide some help at home.
The most important tool I have staying ahead of the lymphedema are the various types of uncomfortable, but totally necessary, compression garments.
There are several different types of compression garments that I use, some for sleeping, some for exercise, some for when my arm swells despite my best efforts.
Each of these garments are made to measure, and quite expensive. They must be washed after each use (especially after exercise), so it is important to have alternates, one to wear while the other is in the wash. I can easily wear three different sleeves in a day when I am doing physical work, or in the summer when everything is hot and sweaty, and that doesn’t count the separate garment designed for sleeping.
Each garment is good only for about 6 months before the elastic starts to lose its integrity, and it can no longer compress the way it needs to, so that doubles the amount I need for the year. Then there are the night garments, also made to measure, and the additional wrapping equipment for the inevitable flare.
These sleeves are medically necessary, prescribed by a physician, can prevent life threatening illnesses, and usually not covered at all by insurance, or insufficiently covered. I’m lucky; my health coverage allows two sleeves and two gauntlets (for the hand) a year, plus one night compression garment every two years. It’s nowhere near enough, but it’s something.
For many people, these compression garments can mean the difference between their ability to hold down a job or not. They are that important. Covering the cost of this medically necessary garments can save insurers money by helping to prevent life-threatening and expensive treatments down the line.
There is currently a bill in congress with bipartisan support. I’d like to see if we can keep it alive all the way to the point where it becomes law and can save some lives. The Lymphedema Tratment Act is a federal bill that aims to improve insurance coverage for the medically necessary doctor-prescribed compression supplies that are the cornerstone of lymphedema treatment.
This video explains more about how the Lymphedema Treatment Act, and why it is necessary. I was particularly touched by the story of the little boy. Imagine needing these expensive garments, how quickly babies grow, and all the parents out there know about the inevitable blowouts. How many clean garments must she have needed for each day? That would be devastatingly expensive.
My bald head was covered with a baseball cap. I was out with no makeup to cover my chemo-grayed complexion as I pushed my baby girl on the swing.
She giggled and squealed, catching the attention of a young man passing by.
“She has a beautiful laugh,” he said. “Are you her grand… parent?” He stumbled over grandparent as we both realized that, not only had he grossly overestimated my age, he had no idea whether I was a man or a woman.
That wasn’t my low point.
The real punch to the gut came a few years later when I was getting my little girl ready for a bath and she casually asked me how old she will be when they cut off her nipples. No tears, no fear, just matter-of-fact assumption that somewhere along the line, her breasts get hacked off.
I felt like my body betrayed me
Cancer didn’t just take my health, it also made off with my breasts, hair, femininity, strength, and a good deal of my confidence. I felt like my body betrayed me. And now, in this hypothetical but not unlikely scenario, my daughter’s body would someday betray her as well.
I helped her into the tub and watched her pretend to be a mermaid. Her movements are fluid and unfettered by notions of shame or inadequacy. Her future is wide open – she can be and do anything, but at this early age, my life is her template.
I knew, sitting there on that bathroom floor, that I needed to wrap my head around this cancer and my body image before my issues became her issues. But first, I had to answer this big question from the little girl in the water.
“Not everyone gets cancer,” I told her. “I hope you don’t, but you might. It will be 34 years before you are the age I was when I got cancer, and that’s lots of time for someone to invent a cure or even a way to prevent it.”
By the time I finished those three sentences, the tub was full of toys and Poseidon was mediating a battle between a narwhal and a walrus. She had moved on and wasn’t listening, but I was stuck in my head trying to define what a healthy body image means, how to make that a reality in my life, how to convey that to my daughter, and how cancer complicates everything.
My body image issues started long before cancer.
At seventeen I was touring Washington D.C. with a group of 200 high school students from around the country. As we walked through the Mall, I overheard two of the other students discussing my appearance. “Judy’s legs are so ugly,” one of the guys said.
“Give her a break, she just got out of the hospital,” the other replied. (No, my health issues did not start with cancer.)
A small part of my brain acknowledged that the second student had jumped to my defense. Thank you, by the way. A much larger part of my brain registered that HE DID NOT DISAGREE with the first student’s assessment of my legs.
In the court of high school social politics, the issue of the ugliness of my legs was raised, and swiftly seconded. That was all I needed. The verdict stuck with me, and I kept my legs covered with tights or long pants for nearly two decades.
Even today, in my mid-forties, each time I leave the house in shorts or a skirt without tights, it is an act of courage that requires a deep breath before stepping through the door.
Why do they have so much impact?
I can’t remember their names. I would not be able to pick them out from a police lineup. I have not seen those boys (men, now) since 1987, and I bear them no ill will. Why do they have so much impact over the way I prepare to leave the house most sunny summer mornings?
It’s not even about them. It’s about me, and my willingness to cling to the derogatory comments and ignore the many more flattering comments I’ve received over the years. A large part of this is about me devaluing my own needs and comfort, and assuming that I owe the world something that I don’t.
After my first mastectomy, I agonized each time before going to the gym.
Sweat made the prosthetic breast slip around, and even fall out of my clothes. Yeah, that was embarrassing. I could stuff my bra with socks and they’d stay a little better, but as I pumped my arms on the treadmill, they’d pile up in the middle of my chest, making me look more Picasso than if I’d just shown up single-breasted.
It was all so inconvenient and awkward, and I contemplated not returning to the gym.
To what extent am I obliged to present myself as a double breasted woman?
Is it offensive to the other people if I show up with one breast?
I struggled with this question. I lost sleep over it. I imagined people who’d had arms or limbs amputated; I wouldn’t expect them to wear a prosthesis if they didn’t want to. Why did I apply a different standard to myself with an amputated breast? And then, I worked up the courage and took a deep breath before stepping through the door single-breasted.
I noticed a motivational poster hanging in the gym showing a woman drenched in sweat with the words, “If you look good working out, you’re doing it wrong.” Ha! Despite the fact that I know women who do kick ass while looking amazing, there is a great deal of truth to that poster.
Why had I not seen that before?
My body is a work in progress.
I don’t need a perfect body to have a healthy body image. My thoughts on body image are evolving, even as I write this. I am learning to accept and embrace both my vulnerability and my resilience – both integral parts of what it means to be alive.
I don’t lecture my little girl on these issues, although we talk about them as they come up.
I hope that she will see that ideas can evolve as people learn and grow just as our bodies do – that is also part of what it means to be alive.
Mostly, I put on shorts or a skirt with bare legs and go out side to play with her when it’s sunny. Sometimes, I even go through the door without noticing, and I’m out in the sun before I realize that I didn’t have to stop and brave up first.
My Cancer Story is a collection of my blog posts and articles about my cancer experience over the years. I decided to pull them all together into one place to make them easy to find.
This turned out to be a much bigger projected than I expected. I’ve cataloged more than thirty here so far, and there are many more to add.
This is a work in progress. I will continue adding the posts already completed as well as the new posts to come, so check back from time to time. Tags are coming soon to allow for searching by topic.
It has been an eye opening exercise to go back through these posts and see how my attitude, perspective, writing style, and my life in general have all evolved over time.
My hope is that these pieces will provide someone with cancer some measure of hope, comfort, and useful information to help them along this difficult road. Even if you don’t have cancer, you just might find this story interesting.
We hold on to each other, we revel in memories, and we pop a bottle of champagne to toast your memory while flipping cancer the bird. We embrace those who are still with us, and carry forward the memories of those who have gone before us.
Two days ago was my dear friend Dee’s birthday – a woman who lives thousands of miles away, yet somehow still finds a way to be here for me at those moments when it’s most important.
Yesterday was Candice‘s birthday, the first birthday she didn’t live to see, and I’m still angry that she’s gone.
In twelve days my little girl turns five.
On April Fools Day, it will be the first anniversary of Michele‘s death; that still feels like the cruelest of cosmic jokes.
In two months, if I manage to get my act together and pass these classes, I will finally graduate with my bachelor’s degree. It took 25 years from the start of the degree, and I stuck with it through several levels of hell, and no small measure of high water. But I’m right here at the end of that road, dammit, and I’m going to finish it.
Today is my fourth cancerversary. It is the fourth anniversary of the day my world was turned upside-down. It is the anniversary of the first time I really had to grapple with my mortality, with the knowledge that I can’t control how much time I have left. I had to accept the fact that despite my infinite love for my daughter, I could not promise her that I would always be here for her. I had to imagine the possibility of her growing up without a mother.
It took a while for me to let go of the idea of getting back to normal – that doesn’t happen after cancer. Instead, I’m learning to dream new dreams, and take what happened to me and try to make the best of it. I could sit here and mope through the day, feeling sorry for myself, but I haven’t spent any of my cancerversaries that way yet. In fact, last year something magical happened.
Tonight, I will be meeting with other leaders of the local Young Survival Coalition to plan out ways we can help other young women with breast cancer through the year ahead.
Life keeps coming at me from a thousand different directions. It’s a maelstrom of joy and fear, comfort and pain, fun and hard work. It’s exhausting and overwhelming, and often moves me to tears. Maybe that’s how I know I’m really living.
28 women finding ways to squeeze the day, every day, while living with cancer and it’s after effects.
Every year we converge on this little retreat center in the woods, on the edge of the canal.
Every year we laugh, we cry, we eat, drink, and dance,
We challenge each other, we hold each other up.
And even more importantly, we rest, and we are cared for.
Every year I come back home feeling two inches taller.
P.S. This year, I brought a spare camera and handed it over to the group, asking them to take pictures as well. I’m so glad I did. I came home with pictures that were complete surprises to me, and this year, I was so engaged in just being present that I hardly took any pictures at all. Thanks so much to my friends for picking up the slack.
P.P.S. The link in the first line will take you to the poem I read at the retreat. It resonated so profoundly with so many of us, and I received many requests for copies. (I’m not affiliated with the writer of the poem, but when you write stuff this good, it deserves a link.)