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.
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.)
“People give you 3 months to mourn, and a year to have cancer, then they expect you to get back to normal.”
I don’t know where I heard this quote first, but I’ve experienced the truth of the statement both in terms of mourning and cancer recovery.
It’s not that I’m faced with the reality of that quote on a daily basis, but it does remind me that while the lingering effects of my cancer still impact every single day of my life, many around me have moved on; my cancer is old news and in their minds, overplayed.
I understand this perspective; I’ve been there myself. I know people whom I’ve avoided because every conversation, for years, involved detailed information about the wellbeing of their bladder or their gout.
It does get old, and frankly, there are some details I just don’t need to know.
I do try to avoid being that person who unloads in that manner, but the fact that cancer is still a part of my present life is depressing to others, as well. People want good news. Something better than “I was able to hold on to my pen long enough to write a whole page,” which is a big deal to me as a writer and avid journal keeper whose dominant arm was significantly impacted by cancer treatment, but not so meaningful to everyone else.
I don’t talk about those things anymore. I swallow my words, and put on a mask, and when people ask how I’m doing, I just say “awesome” and leave it at that.
This is where a group like the Young Survival Coalition, and a retreat like Harmony Hill, are so critical to the wellbeing of a cancer survivor like me. It’s not just a retreat away from the stresses of everyday life, it’s a coming together with other women with similar experiences and battle scars. A three day weekend where we can compare notes, treatments, ongoing issues, what works for me, what doesn’t, and how we’re coping with all of it is not just healing, it’s normalizing – in a good way.
We’re not alone in this experience. We can share without the fear of being perceived as complaining. We can make fun of our condition and laugh at cancer in a way that often makes others uncomfortable. It’s summer camp crossed with a slumber party, plus booze and minus the curfew. It’s yoga, meditation, labyrinth walking, beach combing, flower smelling, and lawn napping, followed by good food, good conversation, and tearing the best parts out of magazines for each of us to make something uniquely our own.
And it’s research. I’m looking forward to another surgery in the next few months. This one will involve 12 hours under the knife – that’s a long time – plus six weeks of recovery. It’s not something to take lightly. But I spent a weekend with 23 other cancer survivors, most of whom have already endured this surgery. I got better information on what to expect and how to prepare from these women who already went through it than from the doctor who has performed this procedure hundreds of times. And that’s to be expected. As much as these doctors know about performing this procedure, they haven’t experienced it.
I’m so thankful I have this group of survivors in my life. That we got to get away together, away from all the other stresses and demands of life for a couple days seems like a miracle. I know it took a lot of work to pull it together, but it was so worth it. I love you girls.
We spent the evening walking down Bourbon Street in the French Quarter of New Orleans, The Big Easy. It’s Friday night, and I’m told much tamer than the partying a few nights earlier on Fat Tuesday.
My friends and I stand at the corner waiting for the light to change so we can cross the street, while revelers around us brazenly jaywalk – behavior that seems foreign to this group of girls from Seattle.
We stop for drinks at Howl At the Moon, and when they are delivered in 36 ounce plastic cups, the server explains that the 3 for one special means everyone is automatically upgraded to a triple, and the cups are plastic so we can take them out in the street.
We look outside: Everyone does carry their drinks with them in the street.
Don’t worry, we adjusted. It wasn’t long before we were jaywalking while carrying open containers. Talk about multitasking.
Beads hang from balconies, street lights, stop signs, trees, public art, and anything else that will sit still long enough to be draped with the twinkling strands in all colors of bling.
A sprinkling of rain and a sturdy breeze lends more sparkle and movement to a street that is already teeming with life; humans, pigeons, palm trees, flowers, moss, mules, dogs can all be seen in a single glance.
The next block we walk through is closed to traffic, and pedestrians fill the area between the buildings as they laugh, dance, and wander amongst the street performers and live music wafting from the insides of bars and restaurants, music so rich and textured it seems to hold a physical presence in the space as well.
Bright lights and dark corners, high contrast colors, bricks and stucco, trolleys and mule drawn carriages, trees and bling,
and ornate balconies populated with blow up dolls
conspire to create an environment that is, to me, both fun and foreign.
