Channeling Michael Jackson

The Glove

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.

GloveUgly, 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

Beat It (Photo credit: Wikipedia)

This is Science Fiction

Three down, thirty to go.  The territory has been mapped, the standing appointments set, radiation treatments have begun.  I counted the days down on the calendar.  Monday, March 8 should be the last blast.  Between now and then, all I have to do is keep marching through the days.  No blood counts to worry about and so no delays to change the plan (we hope). Only 8 pages of handouts to read, compared to the 2-inch, 3-ring binder of printed matter they gave me before chemo began. And if I’m clever, I can still sneak across the building into the infusion center for a popsicle.

If I’m going to continue with the idea of omens, I’ll take the first day as a good one.  The sky was blue, the sun shone, and it was in the 50s. The appointment took about an hour and a half — longer than subsequent ones will be — because that was the day the doctors’ theoretical plans were put into action for the first time. Most of the session was consumed by the technicians moving equipment, marking territory, and taking measurements before the first zap.

The plan is for a total dose of 5040 units (measured as cGy rather than the old term “rads“), broken up into 28 doses of 180 units, followed by 5 higher doses for a “boost” at the site where the tumor was removed, the most likely site for a recurrence.  The goal is the same as for chemo — kill any remaining cancer cells.

The handouts describe the principles and goals of radiation and the side effects, the most prominent one being skin irritation ranging from redness and dryness to itching, peeling and (hopefully not for me) blisters.  The doc says these can be treated with applications of aloe vera or other gentle lotions, including emu oil.  (I could actually get some emu oil locally.  One of the vendors at our farmers’ market sells the stuff.) The skin effects don’t correlate with those from sun exposure, so the fact that I turn the color of a lobster in the sun has no bearing on the effects I may have from radiation.

The other major effect is fatigue, which is cumulative and, as with the skin changes, shows up a few weeks after the treatment begins, dissipating slowly after it ends.  I will lose hair, but only in the treated area.  And since radiation tends to shrink tissues, my stretching and exercises become more important.

So  here’s my new routine (or, if you prefer, the “picnic” or “piece of cake” others have called it) .  I drive to the same building, but instead of going to the check-in clerk on the right, I go to the one on the left.  Then it’s a short walk round the corner to the dressing area.  I strip from the waist up, don one of those flimsy gowns, sequester my clothes in the narrow gray locker, turn the key, and slip the elastic coil that serves as a key ring around my wrist.  Then it’s off to the Fish room — the waiting area for patients only, which is dominated by a large, crystal clear aquarium in the center  with its blue and purple tangs and a variety of other colorful fish and coral.  I don’t have  time to check out the magazines scattered on the tables because my technician is right on schedule and moving me back to the inner sanctum — the darkened rooms where the computers are arrayed in a pod in the control room, and then through the massive, thick door (note the purple and yellow danger sign!) into the octagonal, darkened room that houses the linear accelerator (sometimes called the linac), the machine that sends the deadly beam to its assigned target.

Sitting in the middle of the room, the accelerator looks harmless enough.  A huge cream-colored tower with a broad arm extending outward and down to support a thick metal disc. Nearby is a flat table, which in my case has been set up with the foam back support the technicians made for me at the assessment appointment, with the arm supports already angled up to keep my arms out of the way.  There is a stack of similar blue back supports leaning against the back wall, each one bearing the name of its corresponding patient.  To the right are tall shelves, on which sit rigid white mesh “heads” — the supports used to keep patients still while they undergo head or neck radiation. This is not the warm, familiar atmosphere of the infusion center with its beeping pumps and bustling nurses.  There is no clutter here, no cushions or lap robes, no baskets of snacks or puzzle tables. This is science fiction.

The linear accelerator has actually been around since the 1930s.  There are different types, used for different purposes. At this link, you can see the linear accelerator at Stanford, where the first unit was put to use. Don’t read the article (unless it fascinates you). Just scroll down and look at the historical photos on the right. The one with the child is either amusing or a bit disturbing, depending on your perspective.

To get me ready for the session, the technicians (3, all young women) help me onto the table and into position.  I notice the music playing — greatest hits of the 60s and 70s. Not quite as good as the iPod, but there is no place or time for an iPod, or writing or reading for that matter, on this side of the building.

On the first day, the technicians spent a lot of time moving the table around, moving the arm of the accelerator, working from the plan drawn up by the docs to get the positioning just right.  They take measurements, calling out numbers to each other, and marking out the field to be treated on my chest, this time with a purple marker (“It‘s washable!” the technician says reassuringly).  I was reminded of watching a neurosurgeon in the operating room at the hospital where I worked in Chicago. He too used a purple marker to draw the incision line on the shaved skull of a patient  At the time, I was amused. He looked so much like a kid drawing with a huge crayon.

One technician tells me to turn my head slightly to the right so they have a clear line to the supraclavicular nodes, the ones above the collarbone, the first area to be treated.  Then they mark out the second area, the left side of the chest, to include the internal mammary lymph nodes arrayed along the sternum, and I feel the cold marker tip move down my sternum and over to the left side.  They continue to take measurements and call out positions to the technician in the control booth, positioning the disc of the accelerator directly over me.

In the disc I can see a small window and the reflection of my torso.  Over it is superimposed thin green lines of  light running the length of my body and some narrow red beams.  The field they’ve traced on my chest veers a bit along the sternum, to ensure that the heart is shielded from the radiation.  Luckily, my anatomy is such that this is possible.  Beyond the short-term effects of skin changes and fatigue, the long-term effects can include heart disease  (later on in “young people” like me, Dr. W said) if the patient’s anatomy puts the heart in the range of the beam.  And of course, as with the chemotherapy, anything they do with radiation can cause cancer.  More hair of the dog.

The technicians leave the room during the actual treatment.  Unlike the dentist’s office, there is no lead apron placed anywhere on me.  This kind of radiation doesn’t scatter the way other types do.  The disc of the accelerator hovers above me to treat the lymph nodes at the collarbone, then rotates over and behind my left shoulder to zap the nodes from behind.  On the second round, the disc moves slightly to the right of my chest, angling its beams across my breast to the left.  Then it rotates across my torso and down to the left to angle more beams up and across to the right.  Later, during the boost phase, the disc will send particles directly down into the scar.

During the session, I feel nothing except my right hand going to sleep, and hear only the robotic movements of the machine, like the hydraulic noises you hear on an airplane when the wing flaps move.  During the actual treatment, the machine buzzes loudly, like a very large and unhappy wasp.

As I watched the lines of red light reflected on the wall during the session, I thought of another brain surgery I observed back in Chicago.  The patient had an aggressive tumor and the surgeon was experimenting with something called photodynamic therapy, in which light-sensitive radioactive dye was injected into the patient and a laser was then used to activate the material after it had collected in the tumor, with the hope of killing the cells.  Those of us in the operating room had to wear goggles to protect our eyes from the laser light.  But of course I had to lower those goggles for just a moment.  The lines of red light I saw during my session reminded me distinctly of that gorgeous arc of red light I saw reaching into the patient’s brain.

As I left the treatment room after the first session, I thought, “What, no mushroom clouds?”

Last week, Dr. W was doing her week of service in a neighboring town. The radiation oncologists alternate their service between three sites — here in Olympia and in two nearby towns — spending a week in each location.  So instead of seeing her, I talked with Dr. H, a tall, thin man with a meticulously groomed beard, gray hair, glasses, and a fashionable suit.  When I asked him whether the treatment field included my heart, he pulled up the computer images and traced out the pattern to show that the treatment field skirted just beyond the heart’s edge.  He also showed me the piece of lung that could not be avoided, introducing a risk of inflammation in tissue already affected by chemotherapy and changes that will be apparent on any future chest X-rays.  Since radiation galvanizes tissue, so to speak, the ribs in the field of treatment will also undergo changes, increasing their risk of fracture, but only in cases of major impact — car accidents and such. I’ll be sure to avoid those.

Here’s an article that includes samples of computer planning images.  They’re awful pretty to look at if you don’t think about the implications:

Dr. H also explained the choice of dose  and the reason for the boost at the end of the series.  Since scar tissue is denser than regular tissue, it takes a higher intensity to get the same effect. He also said that, given my general good health (if you don’t count the cancer!) and energy level, I should do well in treatment.  Ah, if only they could give written guarantees.  When I joked with him about not seeing the expected mushroom cloud, he replied “Radiation is your friend!”  Well, you know, I’ve made a few new friends along this path but radiation is not one I anticipated.

So now I need to make the mental shift — from thinking of going to the oncology center once a week for several hours to every day for about 20 minutes. I can’t put any lotion on the skin within 2 hours of treatment (aloe on twice a day but showered off before the session).  No tight clothing (who, me?), perfumes, anything that would irritate the skin.  And I see the doc once a week rather than every 2 weeks.

But, no needle pokes in the chest, no steroid crashes, and food once again tastes like it’s supposed to.

If you’re interested in the mechanics of the linear accelerator, you can see an explanation here:

And if you want to make one at home, you can find directions here:

Remember — no mushroom clouds.  And radiation is your friend.

Disheartening News

Followed-up with the surgeon today. He took off the huge bandage and it doesn’t look too bad.  The annoying drainage tube stays in place till Friday.

Disheartening news, though. The pathology report shows that, of 18 nodes removed, 10 show positive results.

I don’t know what sense to make of this.

No Dancing after Surgery

I got home from the hospital yesterday (Saturday) after surgery on Friday.  They took out the lump.  The sentinel node was clear but the enlarged one was positive.  So they took a few more to analyze, thus the overnight stay in the hospital.  Good thing — the side effects of anesthesia will certainly do a number on one’s plans to go out dancing!!!

Results from analysis of the other nodes to come Monday or Tuesday.  I see the surgeon for follow-up on Tuesday, when I hope he takes this huge dressing off my meager chest and I can get rid of this drainage tube and its attached collection bulb that’s residing in my pocket.  Pain is minimal, and my throat is no longer sore from the tube.  Except for a huge dose of anxiety, I feel just fine!!