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)

The Politics of Cancer Drugs

Another gorgeous day with The Mountain. We’re having a lucky string of beautiful days, but it can’t be Indian summer yet (she says, fingers crossed) because we haven’t had a frost.

The happy drugs are still at work, so I feel good and managed to do this morning ALL those dastardly exercises I’m supposed to be doing every day.  I’ve been frustrated at the slow progress of regaining full arm motion and getting rid of residual numbness and pain. The surgery was back in mid-June, after all. But the physical therapist says chemotherapy slows everything down, so she thinks I’m doing fine.

The Popsicle Report:  Doesn’t matter what shade it is — light, medium or dark — green is a yucky flavor.

I passed the halfway point of chemo yesterday (yeah!) with the last infusion of the Adriamycin, and will finish off the Cytoxan this week. White cells are at 3.8, a little low, but still manageable for continuing treatment.  I should be getting a flu shot, but would like to wait till the white cells are back up into normal range.

My next lesson in chemistry comes with the drug I switch to next week — Taxol.  This drug was developed beginning in the 1960s from the bark of the Pacific yew tree (a more appealing source than the red dirt Adriamycin came from!). The original tree, Taxus brevifolia, was found in a forest north of the town of Packwood, out here in Washington, so it seems I’m in the neighborhood of its origin. But there were delays along the research road, which included fights, even in Congress, over who had fair claim to it and its trademarked name, and ecological concerns about the destruction of the trees for the sake of collecting the bark. So the drug only came into use in the late 1980s. Fortunately, alternate sources for Taxol have been developed, so the Pacific yew tree is safe once more.  Taxol is also used to treat lung, ovarian, and head/neck cancer.

The messy details of the drug’s development give some credence to the claim by pharmaceutical companies that drugs are expensive to research and produce (thus justifying their high costs), but it’s sad to see how politics and greed get in the way of important drugs reaching patients.  On the other hand, there’s the problem of drugs being released before there is sufficient follow-up data to be sure they’re safe. A recent example are the reports that are starting to surface about the Gardasil vaccine for the HPV virus. This one doesn’t affect me directly, but my daughter falls into the age group it’s being recommended for.

As with Adriamycin and Cytoxan, Taxol goes after rapidly dividing cells, so again there are the side effects of hair loss and mouth sores, along with the added possibility of neuropathy (tingling, burning and other nerve problems) in fingers and toes. The infusion will take about an hour, longer than what I’ve been having, but I don’t know if that time includes a Popsicle. There are other side effects, some of which are related not to the drug but to the solution the drug is suspended in for infusion. So along with my happy drug, dexamethasone, I’ll also have to take some Benadryl and Zantac before the infusion to prevent an allergic reaction. The nurse said she’d need to sit with me for the first 15 to 20 minutes of the first infusion to monitor for any reaction. Apparently, if it’s going to happen, it happens the first time, but not after that.  (Gee, nothing like a little heightened anxiety for making the switch.)  But she also said that, compared to the drugs I’m on now, Taxol is “a walk in the park.” Makes you wonder what kind of parks these nurses walk in.

As cancer-treating drugs go, Taxol does seem a bit safer than Adriamycin and Cytoxan, which both show up as known or probable carcinogens on the list put out by the American Cancer Society. If you want to see what else is on the list, you can find it at:  http://www.cancer.org/docroot/PED/content/PED_1_3x_Known_and_Probable_Carcinogens.asp

You’ll recognize some of the standard elements we’ve heard about: asbestos, formaldehyde, radium, and mustard gas.  But there are some surprising items listed too: betel nut, Chinese-style salted fish.  And chimney sweeps and furniture manufacturers beware — your whole profession can induce cancer.

Other cancer-fighting treatments show up on the list as well.  Tamoxifen, widely used in treating certain types of breast cancer (but not mine) is there, as is arsenic, which the infusion nurse tells me is used in minute amounts for a certain type of leukemia.  People undergoing that treatment get a small dose every day (including weekends) over the course of a year.  This idea of using cancer-inducing substances to treat cancer is a bit like the “hair of the dog” cure for a hangover. “Here, take some of what can make you sick. You’ll feel better!”  (By the way, alcohol consumption shows up on the carcinogen list too.)

Two other items that show up on the list are birth control pills and hormone replacement therapy (HRT), estrogen being the culprit behind both. If you look at lists of risk factors for breast cancer published for the general public (for example: http://www.mayoclinic.com/health/breast-cancer/DS00328/DSECTION=risk-factors), you’ll see HRT there. But the use of birth control pills is conspicuously absent from that list. So here is yet another gray area in the world of medicine and science with respect to cancer. What do we really know about the causes (because all of us with this diagnosis rack our brains trying to figure out how we got it) and why is there so much conflicting information about it?

The harder you look, the more elusive the answers.

So I comfort myself by looking at the surprising connections arising from my situation.  During a bout of warm sunny weather a few weeks back, I was basking out on the deck, head uncovered, taking care of paperwork, phone calls, etc. The hummingbirds had no interest in me this time, but the next morning I noticed my scalp was pink.  A bit of a sunburn there.  As I was describing the situation to my dad on the phone later that day, he said “Yeah, that happens to me every year.”  And in a different phone conversation, my brother admitted that he has the same problem, adding “just wait till it starts to peel.”

Never thought I’d be commiserating with my male relatives about a sunburned head.

Egghead

The Popsicle Report:  Red again, the frozen sugar water in the plastic tube. Two red tubes going in — one in the mouth, one in the port in my chest.

Someone asked — why the popsicles?  The idea is that the colder temperature lessens the effect of the Adriamycin in the mouth and therefore the tendency for canker sores. Even with this scientific theory, it’s a nice treat.  Used to be they’d recommend putting an ice bag on the heads of chemo patients, thinking that the same temperature principle would help prevent hair loss, but the nurse tells me they found it didn’t really work.

Someone else asked why chemo patients lose their hair.  It happens because the drugs  attack cells that divide rapidly (as cancer cells do).  Other cells that divide rapidly are hair cells and cells in the lining of the mouth (thus the mouth sores) and a few other places.  The drugs can’t differentiate between cancer and hair cells, so they’re all affected.  There are a number of chemo drugs, though, and not all of them have this effect.  With Adriamycin, it’s a given that the hair will come out.

And come out it has.  The process started a couple weeks ago.  By the end of last week, I lost a handful every time I ran the comb through what was still there.  (Geez, I had a lot of hair!)  My poor son was a bit startled when I mentioned that my hair was starting to come out and — children’s curiosity being what it is — he came up and pulled.  He stood there with a puzzled look on his face, wondering what to do with the handful of strands that came out. Anyway, by the end of last week, a bald spot appeared, and the remaining hair felt so heavy and flat that I decided it was time to take it all off.

Once again, it was good to have a neurosurgeon in the house. I didn’t really want to go somewhere I’d have an audience for my “debut”, and my husband *has* had a bit of experience shaving heads in the operating room.  So he got out his back-up electric razor and took off the rest of my hair out on the deck on Saturday.  A bit emotional for me, but I had the calm water to look at and my dog’s fur to run my fingers through.  The irony of it, yes — and the hair that came off was almost as dark as the dog’s black fur. (Been highlighting the top tresses so long I didn’t realize how dark the roots were!)  My husband said I look like a monk (not a bad thing from my view), and thought it funny that, given my head shape, I wanted eggs for lunch.

It actually feels better to have the hair gone.  I don’t have to be careful with it anymore, my head feels lighter, my morning routine is quicker, and no one can blame me for clogs in the shower drain!  I’m experimenting with the scarves I have.  Yesterday, after the infusion session, we went to a wig shop.  What a hoot that was.  Rather like trying dead animals on your head. (Maybe I should get a Davy Crockett hat.)  There was the Twiggy look (had to explain that one to my college-student helper since she didn’t know who Twiggy was. — No, I’m not THAT old! –).  The sexy vixen look.  The grandma look.  But no Michael Jackson or Kim Jong Il.  For now, I’ll stick with the scarves.

The infusion session went routinely. Strangely, I felt happy to go (6 down, a quarter of the way through the whole series and halfway through the Adriamycin part, which is supposedly the hardest).  But I saw a different doctor (my guy being out of town), and the more she talked at me, the worse I felt.  She seemed to assume that I was feeling awful, or that I should be, and I came away thinking, y’know, I don’t feel as bad as she thinks I ought to!  She prescribed 4 new drugs.  Two of them I expected:  a mouthwash to help with this stubborn mouth sore, and injections of Neupogen to help stabilize the white cell count, which my doc mentioned awhile ago as a possibility.  The red cell, white cell and platelet counts have decreased each week, but that’s typical. So I am now officially “immunocompromised.”  The white cells are at a range that I have to be careful about picking up infections or illnesses.  Fortunately, it’s not virus season yet, but I don’t think I’ll be volunteering at the kids’ schools this fall.

The other two drugs she prescribed are a stomach-acid reducer (Prilosec), but I’m not really having much trouble with that and an antibiotic (Bactrym) to prevent infections, which I’m not convinced at this point I need.  I’m not one to take drugs if I don’t have to and we’re all aware of the problems of overuse of antibiotics, not to mention their side effects.  Adriamycin itself is a powerful antibiotic (first time I’ve had a clear complexion since puberty!).  I appreciated this doc’s attempt to be thorough, but it was rather the steamroller effect.  She was following the protocol she used in training at the Fred Hutchinson Cancer Care Alliance in Seattle, which she said she uses for all her patients.  I figure, she’s young, and will season her approach with more years of experience. Next week, I’ll see a different doc since mine will still be out of town.

In the meantime, we have to dive into that murky area of health insurance regulations. Our coverage here is quite good, but the pharmacy requires preauthorization from insurance and the doc’s office to dispense the Neupogen injections, which we can actually do at home (only (!) 3 times per week, and gosh, I think that neurosurgeon who lives here has had some experience giving shots).  But the drug is expensive and the insurance company is telling me they can only authorize the oncology center, so there’s a glitch between the doc’s office and the pharmacy, based on what the insurance company says.  It’s not like this is a controlled substance.  I don’t think anyone chooses Neupogen for recreational use. “Yeah, doc, I think my white blood cells are low, can you get me a shot of that Neupogen stuff?”  (Now the dexamethasone, the steroid they give me before the infusion, might be worth getting hold of for its energy and mood-enhancing effects, but there’s no problem getting that covered!)  So today, it’s more phone calls to get through the obstacles that seem totally unnecessary.

When we’re talking about health care reform, as we are across the nation now, I’d really like to change some of the wording.  It’s not reforming health care (and no one is addressing the fact that there won’t be enough health care workers to cover all the newly insured!). It’s about health INSURANCE reform.  And what’s clear from my individual situation with the Neupogen is that it isn’t the docs and other healthcare workers who need reform. Most of them are just trying to do the right thing for their patients (and most have had to learn how to get around insurance restrictions). So it’s not the “medical-industrial complex”, because that term implicates the people who actually provide the care; it’s the insurance/pharmaceutical industry and their concern for profit margins .

But off my soapbox —  overall, I think I’m feeling pretty good (and isn’t that what matters?)  I have bouts of fatigue, especially on gray days, when I really just want to have a nap, but on the other hand, I “played” (walked and putted only) 9 holes of golf with the family on Sunday.  The mouth sores may be an ongoing thing, my appetite is better in the morning than evening, and some foods are now looking more appetizing than others.  (Cottage cheese and apples, yes; large slabs of meat — nah.  Green tea at lunchtime is a very good thing.)  No nausea (fingers crossed), and I’m sleeping OK. Physical therapy is going well — very little pain and I’ve recovered much use of the left arm.  The scarf on my head is really the only outward marker of the illness (the three scars on my torso no one sees but me).

So, onward and upward….

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!!