Saturday, November 28, 2009

What's Up Your Sleeve?

Does your left hand know what your right is doing?

For four days, my right hand was doing everything. My left hand – and forearm and elbow and upper arm – were all bundled up, wrapped to reduce lymphedema, a swelling that is common in women who have lymph nodes removed during surgery for breast cancer.

This bundling process, provided by an occupational therapist with special training in treating lymphedema, starts with a full-length gauze sleeve. More gauze is wrapped around each finger. Then comes a layer of cotton batting, followed by large pieces of foam rubber. Next is a wide band of stretchy gauze. Last comes not one, not two, not three, but four layers of stretchy bandages, all taped down.

Next? Me, whining.

Never mind that my left arm looked as though it had been ripped off the Michelin Man and transplanted onto me. I could barely bend my arm. It was heavy. And I had exactly three shirts in my closet that would fit over the thick bandages. Still, in order to combat the swelling and encourage my lymphatic system to start working correctly again, I was to go about wearing the tape, bandages, foam, batting and gauze wrappings for 23 hours a day. Staring in shock at my newly immobilized limb, I asked my therapist if I could type. She was sure I could.

I couldn’t.

The bandages on my left hand kept hitting all kinds of weird keys. My right hand was happy to go it alone for a while, but then that arm would start to burn and cramp. Meanwhile, my left arm alternated between itching, throbbing and feeling hot. Surgery, post-op annoyances, wrestling with the drain, dealing with extra fluid at the wound site and learning how to maneuver a breast form all were a cinch compared to living with this!

I was scheduled for two weeks of therapy appointments. Each week day, I was to unwrap my mummy arm in the morning, shower and then head -- unbound -- to my appointment. There, after a massage to stimulate lymph drainage, I was strapped back in. What about weekends? Well – I was told I could take off the bandages and shower on weekends if I could wrap my arm back up properly. Hah!

I couldn’t.

Lymphedema is not curable -- I learned this on my first day of therapy -- but it can be managed. If treated early enough, sometimes a mild condition will reverse spontaneously. If left untreated, symptoms may include severe fatigue, a swollen limb, fluid accumulation in other body areas, discoloration of the skin, infection and eventually, deformity. An extreme version of lymphedema (one that involves microscopic parasitic worms) is elephantiasis.

To reduce the risk of my wee bit of lymphedema running wild and out of control, my therapist said on the second day of therapy that the prescribed treatment would be to wear a compression sleeve every day and to bundle and bandage my arm every night -- for the rest of my life. I just looked at her and said, “No.”

I couldn’t.

I went home that day with my left arm immobilized and my mind and spirit pulverized to a fine powder. Since Oct. 7, people have been telling me things I do not want to hear. Since Oct. 7, I have been moving passively through the medical world, a patient expected to be compliant. Since Oct. 7, my sense of myself as a healthy, active individual has been under siege.

On the third day of therapy, the lovely young woman who truly wants the best possible outcome for me discussed an alternative to night bundling – specifically, an elaborate, expensive compression sleeve. She also showed me daytime sleeves that come in bright, crazy colors, as though making a fashion statement with a sleeve would make wearing it more appealing.

The fourth day was Thanksgiving. Time spent with friends and some delicious food pierced my gloom for a short time, but through the day, though people said, “Have a nice holiday,” I couldn’t.

At 3 a.m. on the fifth day of therapy, I woke up and could not get back to sleep – a rarity for me. At 5 a.m., I unwound every layer and freed my arm some four hours earlier than prescribed. At 10 a.m., I dragged in to therapy and announced that we needed a new plan, a plan that would allow me to take good care of my arm but that also would allow me to move through the world as myself.

The therapist hugged me. Next, she measured my arm and reported that the swelling was down by half. Then she told me that if I could find a medical supply store that stocked an off-the-rack compression sleeve that met her standards, I could buy it and try going bandage free, as long as I wore the sleeve during my waking hours.

I could. I did. I am. And it's just fine!

Saturday, November 14, 2009

Arch(ery) Comments on Whipped Silicone

No archery!

That’s what a Pat Sitter squealed a couple of days after my mastectomy. Okay, I was prancing around the living room, pretending to shoot arrows at the neutral-colored walls.

“I’m being an Amazon,” I explained. “You remember – the Amazons purposely cut off one breast to make themselves better archers.”

The Amazons, in case you don’t remember, were a nation of all-female warriors in classical and Greek mythology. Legend has it that they cut off their right breasts so they would be able to use a bow more freely and throw spears without the physical limitation and obstruction of a pair of 38DDs.

Ruled by a queen named Hippolyta, the Amazons spent a lot of time making war (not so much making love) but they also were said to have founded many towns, among them Smyrna, Ephesus, Sinope and Paphos.

My friend reminded me that I am not now nor have I ever been an archer, much less an armed warrior. Besides, taking part in a war (or even founding a town) was not on the list of permitted activities during my recovery from surgery.

Replacing the stretchy post-surgical camisole was permitted, and I made that a priority. Shopping for a temporary front-close bra was straightforward enough, but learning about the array of “breast forms” (which is easier to say than “prostheses”) turned out to be hilarious.

Breast forms – and may you never have to know this from personal experience – come in all shapes, sizes and colors. Here are just a few of the options:

• polyester-filled cotton pouches

• foam forms with nipples

• foam forms without nipples

• silicone triangles

• silicone ovals

About those foam forms without nipples -- if you change your mind later, you can buy spare nipples! One Internet shopping site gave the nod to handcrafted breast forms made from soft fabric pouches filled with bird seed or millet. “In warm climates,” the site cautions, “the seeds may sprout.”

Just what you want – delicate green tendrils snaking out of your cleavage!

Some of the silicone breast forms are heavy. Some are made of “whipped” silicone, which is said to weigh as much as one-third less as the heavier models. The one I brought home weighs about a pound and a half.

(Worrisome thought: Will they believe me at Weight Watchers when I blame my breast form? Will they believe me even if I leave it at home?)

For now, the temporary bra and form allow me to go out looking normal, as long as no one looks too long or too hard. That’s because I am not good at this yet. Occasionally, I peer down my shirt to see if everything is where it should be. When it’s not, I head for a restroom to pull down what has scooted up and push back what has scooted forward.

The “patient care coordinator” I worked with at Medical West assured me that a few weeks from now, when I am fitted for a “real” bra and a breast form that suits me perfectly, I will be able to put them on and go about my day without giving either a thought.

I look forward to that.

P.S. I also look forward to moving to San Francisco -- the condo goes back on the market Monday!

Monday, November 2, 2009

Part of Healing: One Fine Irish Fit

For nine days, I have excelled at passivity. I’ve read, visited briefly with friends, napped, devoured many bowls of many different kinds of homemade soup and watched television. (How about those great “Glee” cast members singing the national anthem at the World Series!)

This morning, I started a revolution.

This morning, I called Wellmark Blue Cross/Blue Shield at the offices in Iowa to discuss the level of coverage provided for mastectomy bras and prostheses. I know that eventually, I will have to stop living in the recliner and begin to engage with the larger world again. I’d like to have the right underwear before that happens.

A customer representative at my health insurance company informed me that though the typical Blue Cross/Blue Shield policy covers the cost of six mastectomy bras/camisoles and two prostheses, my company’s policy covers one bra and one prosthesis -- every two years.

I happen to be grateful that I have health insurance -- but one bra every two years? NO bra – if you wash it -- lasts two years. Also, mastectomy bras are pricier than regular bras. And one of anything is never enough for me!

Quality prostheses run about $250-$300 each, and doctors recommend that you have two in case one is lost or damaged. I’m not sure how a prosthesis might get damaged, but they can get lost. Bobbing in the ocean one day some years ago, I met a woman in hot pursuit of her prosthesis, which had just floated out of her swimsuit and was quickly heading out to sea.


“Thank you,” I said to the representative. “I am hanging up now and writing a letter to the CEO of Lee Enterprises, who happens to be a woman.”

Though I doubt that Mary Junck is aware of the skinflint nature of this particular clause in the insurance contract, I am certain that it is my responsibility to tell her about it. So I did.

In the letter, I quickly filled her in on my story. I told her about the phone call to Wellmark Blue Cross/Blue Shield. And then, I wrote this: “I am writing today to ask Lee Enterprises to offer what other companies typically cover for women who have lost a breast to cancer. Thank you for your consideration.”

That’s it. I did not hurl invectives – and I love hurling a good invective – and I did not indulge in name-calling. I want Lee Enterprises to adjust the coverage for my sake but also for the many women who are less likely to be able to afford to buy what they need in order to feel good about living lopsided in a symmetrical world.

I sent copies of the letter to the director of human resources and the director of benefits at Lee Enterprises. I sent a copy to the business representative of The Newspaper Guild, which is my union. Then I alerted my female colleagues, including retirees and women still at the Post-Dispatch, about my actions.


Florence wrote back immediately. “Send pix of the two-year bra,” she said. “Must be titanium.”