Channeling Michael Jackson

I had just returned from taking my children on our every-weekday run to the school bus stop. We had the radio on, not to my usual NPR station but to my son’s favorite “warm” music station and the tune that came on as I pulled back into the garage was Michael Jackson’s hit of 1983, “Beat It,” a song whose lyrics I’d never really listened to until this morning.

So I had my “garage moment,” as others have their “driveway moments” — those moments you stay in your car listening because the story (or in this case tune) on the airwaves captures something in you.

And so it was with MJ this morning, and I did my driver’s seat dance.

The song has a great beat, bass line and guitar solo (compliments of Eddie Van Halen). Never mind that it’s advice to a kid trying to work up the courage to face his bullies:

They told him don’t you ever come around here
Don’t wanna see your face, you better disappear
The fire’s in their eyes and their words are really clear
So beat it, just beat it.

MJ was never at the top of my list of favorite artists, but I appreciated his talents, especially — having been a dancer once upon a time — the dancing. (I admit, though, that I have never quite understood the allure of the zombies-in-the-graveyard scene in Thriller.)

My daughter never liked Jackson, thought he was “creepy,” but she only knew the Michael of the later era, not the cute, wide-nosed version who sang “Rockin’ Robin.” On the day Jackson died, we teased her that her favorite singer was gone. In response, she rolled her eyes at me.

So now here I am, writing this at the counter in my kitchen because, from beyond his grave, Michael is reminding me to finish the project I started more than a year ago.

Here is a picture of a glove I own.

Ugly, don’t you think?

Those of you who have seen, or own, such a thing know this is no ordinary glove.  It’s a compression glove, made of strong, highly elastic fabric, custom designed in Germany.

Yep, ugly. That’s precisely what I thought when I brought it home about 2 years ago, and its presence in my house depressed me for awhile. You see, this is the glove that I will have to wear periodically to combat the swelling that occasionally appears in my left hand. This swelling, known as lymphedema, is the result of the removal of about 23 nodes from under my left arm during my surgery for breast cancer.

Lymphedema is not related only to cancer surgery or only to the arm. It can occur in anyone whose lymph system is disrupted anywhere in the body. About 8% of women develop lymphedema after breast cancer surgery, and the risk increases with radiation therapy.

Twenty-three seems like a lot of nodes, but since no one knows how many any of us has, we have no way to gauge the damage done by their removal. I once read a report of a woman who had 66 nodes removed. Herein lies yet another mystery of the human body.

The overall surgical procedure for someone with breast cancer has changed drastically over the years, from the mandatory radical mastectomy, which my grandmother had for a pea-sized lump, that removes all breast tissue and much of the underlying muscle to the lumpectomy of today, which takes only the lump and a small portion of surrounding tissue.

But even for a lumpectomy, the surgeon always checks the nodes if there’s any hint that the cancer has started to spread. Maybe the nodes “light up” on an MRI scan, or maybe they’ve actually started to expand enough to be felt physically, as did one of mine.

The nodes need to be delineated before surgery so that the surgeon can find and remove them, and this tracing involves a rather unpleasant procedure in which a technician injects dye into the lymph system of the breast through a needle inserted into the nipple. (Overall the surgery is probably worse, but at least you’re asleep during that.)

The dye traces the path of the lymph nodes to the outer edge of the breast and up into the armpit, and the first node in the path is known as the sentinel node. It’s only been in the past couple of years that doctors decided it was enough to remove only the sentinel node for testing rather than a whole batch of them. If the sentinel node is clear, no other nodes are removed. If it’s not, the patient is scheduled to have chemotherapy.

But it doesn’t matter if it’s just one node, or 23, or 66 that are removed. Along with permanent numbness under the arm from nerves that are severed during surgery, you are now at risk for developing lymphedema because the lymph system is disrupted.

As it is with everything else related to cancer, whether you develop the swelling depends entirely on the individual. Some of us may never be bothered. Some can suffer debilitating bouts of it, even though only a few nodes were removed. (Those of you who like to scare yourselves with the worst-case scenario can look up lymphedema on the Internet and see graphic photos of extreme cases.)

And it can show up at any time — 2 days, 2 months, or, in the case of one woman I know, 12 years later.

In my case, it was almost 2 years past surgery. We had been traveling and I noticed some slight swelling on the outer side of my left hand. The swelling disappeared about a week later, and I decided it was perhaps the effects of the air travel, even though I’d never before had trouble with swelling when traveling. When it reappeared and crept up into my fingers, I realized with sudden sadness what it was.

That’s the thing about cancer. You can beat the disease but there is always the aftermath, and it often seems that it never ends. So even though the swelling was slight, its occurrence plunged me once again into a very dark place, and the confidence I’d gained, almost 2 years on, blew away like leaves on the wind.

It’s at these moments that you must begin again, simply because there is nothing else you can do.

The oncologist confirmed that the swelling was likely lymphedema, the trigger for it unknown. (The experts say it can be anything that stresses the lymph system, from a mosquito bite to air travel.) He sent me to a therapist who specializes in treatment. She had been trained in Germany, where the study of lymphedema is far advanced over ours here in the U.S.

After massaging the hand, arm and chest, the therapist carefully measured my hand — across the palm and the back of the hand, along each segment of each finger — to write up the order for the glove. Over the course of 6 weeks or so, with ongoing massage and the procurement of two gloves (the first one returned because it turned my fingers purple) the glove and its matching sleeve, which is to be worn in tandem to keep lymph flowing throughout the arm, the swelling surprisingly disappeared.

And so I took off the glove, and gladly put on my wedding ring again. I assumed I’d beaten it, and I would occasionally see the glove lying listlessly in my drawer and think, “Ha HA! Never again.”

But the mind plays us for the fools we are. It lets you think that, once you’ve faced the danger, once you’ve paid the dues, you won’t have to do it again. So what if the glove and sleeve together cost about $600? I was happy to see that version of money lying uselessly in my drawer.

But then, last week, I turned my hand just so, and felt that painful pull in the skin, this time on the inner side over the knuckle of the index finger and toward the thumb. There were also the transient aches and twinges in my arm that told me the lymph fluid was getting backed up again.

The mental plunge was not as deep this time because now I had the wisdom of experience. I didn’t run to the therapist, didn’t even call my usual massage therapist, who is also trained to treat lymphedema.  I massaged the area myself in the way the therapist had shown me — clearing the lymph nodes in my groin first, then stroking down the side of my body, then down my raised arm, to send the stuck lymph fluid past the scars of surgery and into the larger nodes near my hip.

And I reluctantly retrieved the glove from the bottom drawer, where it lay hidden beneath some slips and old pajamas.

The swelling is once again dissipating with the help of the glove and some surprising activities, like writing comments on student essays. I am left-handed, and the fine motor movement of writing is helping to pump the lymph fluid out. At last, I’ve found a tangible use for grading papers!

In my first bout of swelling, when I thought I’d be wearing a glove every day, I dreaded having to explain to people why I was wearing that ugly old thing. So I decided I’d disguise it, do something to either deflect attention from it or call it into the limelight because of its style.

And then I thought of Michael.

Yes, you know it. That glove of his was my inspiration.

I can’t afford the Swarovski crystals, but some fabric paint, a glue gun, and some cheap rhinestones are a pretty good imitation.

WARNING: Decorating a compression garment like this, even with the artistic touches contributed by your daughter, will void its warranty, and make it less functional.

Michael — you did us all a disservice with the drugs that took you away too soon. But your music has inspired me now to finish my work. Your song is about running away from bullies. My glove is about standing up to them.

Just beat it.

Beat It (Photo credit: Wikipedia)

New Recruits and Losses: The Yoga Gang

(Photo credit: Lese3d)

For Richard and Pat

“My name is Julie, and I had breast cancer.”

These are the words I speak when a new person joins the cancer survivors yoga class I attend. And last week brought another recruit. By way of introduction, each of us in the class gives our name and diagnosis, the touchstone we all share.

I joined this class shortly after my diagnosis, choosing it above the standard yoga classes I’d been attending because I was looking for every positive support I could find – leaving no magic stone left unturned — during my time of treatment. I hoped that the class would unlock some secret that would see me through.

That was more than 3 years ago.

Because of work, holidays, and other preoccupations, I have not always been able to attend the class regularly, but have re-committed to going because, as several of my classmates have remarked, it is therapeutic. At the beginning of each session, we all check in, reporting how we are feeling, physically and mentally. Besides the conventional asanas, the class incorporates meditation, guided imagery, and chant, with a focus on moving energy through the body and healing.

Although we all stand under the same umbrella, the one with the large letter C stamped on it, our experiences with the disease have varied as much as our lives. Most of us have dealt with breast cancer, Pat and Anne 11 years ago, Helen, Roxanne, Meg, and I more recently. Lija is currently undergoing rigorous standard treatment, while Therese chose alternative routes. Diane is being monitored to determine her best approach.

A few in the group have had other types of cancer. Our newest member, Mary, had cervical cancer many years ago. Magda is our dearest inspiration. Her courage in undergoing experimental therapy for melanoma tells of the strength of human nature and the miracles medicine can still bring about.

Our ages span five decades; our diagnoses fall all along the continuum from stage 0 (yes, there is such a thing with breast cancer) all the way to stage 4, the dreaded metastasis. Likewise, our treatments vary widely and include the whole range of approaches, from observation and surgery to radiation, chemotherapy, and continuing drug therapy.

For all of us, this yoga class is the only place we can be entirely honest about our situations, where we don’t have to explain ourselves or our fears. Like soldiers after combat, we are linked by our experience.

At lunch after class, we talk about research developments, share tips about insomnia and nutrition, discuss which doctors to see (and which to avoid), which supplements to take, and what helps us deal with pain and anxiety. But we also talk about travel, world and national news, politics, and our families. We rejoice when the results from a check-up are positive, and gather closer when one of us receives disheartening news.  Some of us come to class regularly, some only sporadically, and sadly, some will never return.

In the past few months, we’ve suffered the loss of two of our most courageous members.

Richard inspired us with his positive outlook and his willingness to speak plainly to help others deal with the trauma of their diagnosis. I once joked with him, saying that he should get a commission from his doctors for promoting their care at the many support activities he attended in the community. He replied simply, “These people saved my life.” Not long ago, we learned that he would pass up a round of golf to come to class.

Pat had lived with cancer for 17 years, 13 of those with the envied NED (no evidence of disease). As a nurse, she knew better than most what might come, and was determined to go down her path with grace. She died on New Year’s Eve, and it has only been since then that many of us learned of her talents in painting and calligraphy. Her favorite character from the Winnie-the-Pooh stories was Piglet, and she kept a small figurine of him hanging from the lamp by her bed.

Most of us like to feel a part of something – and to be part of this class is both a privilege and a blessing. My life has been immeasurably enriched by this circle of support. From members of this group I’ve learned that it is possible to live, yes really live, with this disease, even for those at stage 4. It’s not a group I would have chosen to join, if I had such a choice, but there’s no better place to be.

Photo credit: Wikipedia

A Season of Peace

English: Advent wreath, First Advent Sunday (Photo credit: Wikipedia)

For Lynn, Marta, and Teddy

Yesterday began the second week of Advent on the Christian calendar. The word Advent derives from Latin and means an approach or awaited arrival. The season of Advent, covering most of the month of December, is about waiting for the birth of Christ on Christmas Day. We mark this time of waiting with calendars and wreaths.

We’ve all been doing a lot of waiting in recent months, even before Advent began, mostly in hopes that things will get better – the job market, our home values, the economy, our government (whose sensitivity to its citizens is ever fading).

But this is also a time of passing.

A passing of the noise of election campaigns

A passing of the earthly season – fallen leaves giving way to bright holly berries

And for me, there is the passing of brightness that took form in the lives of three special people, people who have recently passed on – “gone before us marked with the sign of faith,” as the priests say in the course of the Catholic Mass.

Lynn – who counseled me in my walk on Cancer Road. Her twinkling eyes and great humor helped me keep it all in perspective. She had to take up her own journey on that road, on a much swifter course that took her away.

Marta – another traveler on this road, whose reassuring words after my diagnosis helped me see cancer as a life event, not a death sentence.  For 6 years, she danced with Cancer, till her body could no longer take the steps.

And Teddy — who did not die of cancer, but whose generous and compassionate heart simply gave out. The particular cause of his death does not matter, though, for his illness teaches the same lessons:

To recognize our own mortality

To see the many blessings of our life while we have them.

These three have gone on to the place of peace we believe exists for us all. May those of us left behind in sorrow at their passing find a measure of that peace as we await Christmas and the coming of the new year.

Photo credit: Wikipedia

For Carel, Karl, and Clara Fern

And all of us who wait, with all our losses

A season of waiting

A season of passing

A season of peace

Of Mice and For Men

This week, we send our thoughts, prayers, and maybe our dollars too to those on the east coast of the United States who are suffering such devastation from hurricane Sandy’s wrath. Homes, businesses and lives are gone; many people’s futures have been forever changed. And though I’m a long way from the damage, my own life may be affected by some particular effects of the storm.

Who would ever think that a hurricane would have anything to do with breast cancer? They are two very different storms. One can be predicted, blows through externally, but (mercifully) dies away. The other sneaks in unannounced, wreaks its havoc internally, and must be driven away. But each one holds its victims in a lingering grip.

Along with the many buildings Sandy destroyed was a laboratory at New York University, which housed some very important mice.  These mice have been specially bred for particular experiments, among them research for cancer.

Mice such as these have done more than their fair share to help us humans find a cure for breast cancer (and other diseases). They’ve been called on to chart metastasis. They helped researchers find a drug that targets an inflammatory response that helps fuel triple negative breast cancer.  And they’ve helped us discover that the herpes virus and something called an HDAC inhibitor can destroy cells of triple negative breast cancer, the type of cancer I had.

So here’s to the mice (and the many other creatures), whose lives have so often been sacrificed in the service of humans.

But as the hurricane and the Pink Month recede into the distance, I would be remiss to overlook another topic related to the storm of cancer — the focus this month on men affected by prostate and testicular cancer.  As October directs our attention to breast cancer awareness, November has been designated the month for prostate cancer awareness.  The numbers tell the story — even more men are affected by prostate cancer (1 in 6) than women are affected by breast cancer (1 in 8).

So here’s to the men, who have their own cancer storms to contend with. If you’re a man and you’d like to help raise funds for research (some women might be able to participate as well!), here’s an ingenious and positive undertaking.

Octobra and Tutus: The Pink Month Revisited

Portrait of a young girl in pink dress. (Photo credit: Wikipedia)

 

There’s no getting away from it – it’s the Pink Month again. As they say, if you can’t beat ‘em, join ‘em. This year, it’s all about fashion.

Like gloves and dancing? Here’s the sequel. You won’t dance alone.

Just don’t try to play the guitar.

The exhibitionists among us can don the Madonna look. But you will see neither me nor my cup size here.

As a former ballerina, I can fully support the Tutu Project. The man behind this brilliant idea talks about his project here. And if you’re inspired to make your own tutu, here are some instructions. Choreography not included.

Yes, it’s Breast Cancer Awareness month — again.  If you must do it, just Think Before You Pink.

Reprieve?

In the mail a few days ago came the report of the results from my recent MRI. Along with the mammogram, the MRI is one of the ways the medical folks keep an eye on me after my cancer treatment. I am more than 3 years past the day I received the breast cancer diagnosis, and 2-and-a-half years past the end of chemotherapy. That’s when the countdown, for me, to that critical 3- and then 5-year mark began.

The MRI may seem like overkill, especially with its added expense and the dogged determination of the medical community to promote mammograms. But it’s necessary for me because the mammogram tends to fail those of us who have dense breast tissue — a factor that is finally starting to show up on lists of risks for breast cancer. Besides the annual mammogram and MRI, I visit my oncologist every 6 months for blood tests and a review of my status. My last 6-month check-up, back in April, showed only some lingering whacked-out red blood cells.

At that time, I had developed a new pain in my right abdomen, one that had hung around for a few weeks, consequently triggering my internal alarm. The pain had passed the 2-week mark I had been coached to observe. And so I followed the oncologist’s suggestion to have an abdominal ultrasound, which fortunately, like the mammogram and MRI, showed nothing wrong. (Cancer, the “gift” that can keep on giving — you just don’t know when.)

Although my body seems to be recovering well, is actually intent on reclaiming its good health, I am still struggling with the mental, emotional,and spiritual recovery. My body has its own mind. The mind itself needs to catch up.

The nurse had already called me to report the MRI results, but that wasn’t enough. I needed to see the full report in print on the page in my hand.  And in that small space of silence after reading the results, when I let out the breath I had been  holding, a tiny thought crept in. A new and, for me, startling thought.

It just might be possible to be cured of this disease.

The body will know when that happens. The mind might never be sure.

Related articles

• Mammograms and dense breasts – questions abound (bangordailynews.com)

The Olympics: A Training Ground for Cancer?

1996 Summer Olympics (Photo credit: Wikipedia)

‘Tis the season for sports (here in the U.S., it’s ALWAYS the season for sports), and the Olympics are fascinating us as much as they ever do.  The races, the stories of the athletes, even the silly discussion about The Flying Squirrel’s hair.  Eyes around the globe are focused on screens of all sizes — iGadgets, laptops, desktops.  Some (those of us in the “old school”) even wait for the evening NBC broadcast, despite knowing the outcomes of the various competitions.

But once these five rings disappear and the athletes pack up their medals and head for the airport, what happens next?

Here’s what happened to Shannon Miller, one of the gold medal winners from the 1996 Olympics, and one of the “Magnificent Seven.” The link to this site was sent to me by a reader of my posts, and I told her I’d do the favor of posting it here. It’s a short interview with Miller – won’t take but a couple minutes to read. But its message should resonate with you for a long time. A gold-medal Olympic athlete (so damn young and so very healthy!) compares her experience with ovarian cancer to her training for the Olympics.

Here’s to all of us, athlete or otherwise, who have gone the distance with cancer — all of us worthy of our own gold medal.