Life Amid the Treatment

I”m a bit late getting this out. Goodness, December already.  Feels like it outside today, and the mountain is obscured by clouds. Lots of snow up there and the ski resorts opened early this year.

Teapot dropped by for a quick lunch just now, and the Jehovah’s Witness found his way to my door this morning to leave me his message and a couple of Watchtowers to read. I’m slurping down some homemade vegetable soup a gracious neighbor brought, trying to be conscious of eating healthful things, though I must confess I snarfed down some potato chips a couple days ago (salt and vinegar). Good thing I don’t work at the Cleveland Clinic.  An article in the current Newsweek notes that the CEO has banned potato chips from the vending machines there, and he actually refuses to hire people who smoke. At least he’ll keep employees from freezing to death on smoke breaks during those cold Cleveland winters.

The Popsicle Report:  I felt like branching out.  Same brand, different flavor: strawberry lemon.  Pretty darn tasty.

On the iPod, in addition to the regulars, was Cecilia Bartoli singing Bizet songs in her nimble, gorgeous voice; Moby, who’s nimble in a different way; Charlie Barnet and some big band music; Trout Fishing in America, a classically trained duo now playing family music; and Gato Barbieri, an Argentinian tenor saxophone player of free jazz, who had a Muppet fashioned after him.

Speaking of Muppets, they do a grand interpretation of Queen’s Bohemian Rhapsody here: http://www.youtube.com/watch?v=yVB4kUK6UY8

Beelzebub has a muppet set aside for me.

Infusion #20 down (#8 of the Taxol), 4 more to go. White cell count is above normal at 15, meaning I can probably skip that Neupogen shot this week. The red cells are still quite low at 8.7, but increased from the 8.4 of last week, so the B vitamins must be doing their work. No sign of neuropathy or any new problems beyond what I’ve had so far. My fingernails have more spots, but I haven’t lost any, something the naturopath warned me could happen. I just have to keep on keepin’ on, trying to finish the chemo part of the treatment by the end of the year.  After the New Year comes 6 weeks of radiation, but I’m not able to wrap my brain around what that entails just yet.

The infusion center was quite lively this week.  I was anchored to the Barcalounger in the far back corner. Not much of a view out the window, but a direct line of sight to the large stainless steel box that warms the blankets they put over patients, and the tall stack of colorful fleece blankets someone had donated for the season. In the opposite corner of the room, a man reclined in his chair while talking with the Cancer Society reps. about what it would be like to go up to Seattle for a stem cell transplant, as he would be doing soon. The male rep. described his harrowing experience of several years ago, about how they used the chemotherapy to wipe out his immune system so they could do the transplant, how he was in the hospital for 3 months.  But there he stood, if not hearty, well very much alive, and I was again reminded of how much more some of these patients have had to experience than I have.  President Nixon signed the National Cancer Act into law back in 1971.  Thirty-eight years later, cancer is still with us, but there are numerous veterans of the war still here too.

Next to the man preparing for the stem cell transplant sat an elderly woman hunkered down in her wheelchair, getting ready for her 5-hour session, peering out at the room through large glasses that over-magnified her eyes.  She seemed frail, needing help to go to the bathroom, but she was definitely of strong mind. When another man joined her pod, she asked the nurse if she could be moved elsewhere because her area was too full of men.  I told the nurse that the lady, Jean, could come sit near me, but she had to keep her assigned place since all chairs in my pod were already reserved. The best the nurse could manage was to turn Jean so she could see over into my pod.

As I was waiting for my blood count to come back, a tall thin man with gray hair took a seat in one of the chairs opposite me. He wore a black baseball cap stitched with gold letters spelling out US Army, a dark T-shirt, and jeans. With him came his wife, a small stout woman neatly dressed in subtle shades of brown and cream. As soon as he entered the pod, the man began to joke loudly with the nurse who takes vital signs, saying he didn’t like her new hair color and she ought to change it back from brown to blonde. And so began a conversation about hair (he’d lost his too in the previous 3 years he’d been coming to the center), during which I noticed the man was missing his top front teeth. I asked the man if he knew how much time and money it took for a woman to be a blonde. Indicating himself, he responded, “Well we pay for it, so we should be able to say what color it is!”  His wife sat beside him smiling serenely. Her hair was strawberry blonde.  When he got up to leave after his blood draw, he gently took his wife’s hand as they moved out into the passageway.

A little while later, Jean’s granddaughter came to sit with her during the infusion. They talked awhile about the confusion of Jean’s transportation that morning (a van had come to pick her up before the granddaughter was scheduled to do so), and then the granddaughter pulled out the Trivial Pursuit game sitting on the shelf nearby.  As she started to read questions from the cards, the men in the pod perked up and began answering, and I chimed in with a few answers as well. (Quick now, the City of Light is ______.  And what was the fate of the three blind mice?).  Jean perked up considerably during the game and fell into conversation with the men about movies they had seen, and a new book that had come out. Maybe she decided men weren’t so bad if they knew answers to trivial questions.

So you see, life goes on even in the midst of serious illness.  And illness incorporates itself into everyday life.  Those of you dealing with chronic illness know this more than I.  Doing a weekly update about my health might indicate that cancer has taken over my life. As a matter of fact, when my internist called back in June to check in with me, she said, “Managing this disease will be a full time job.” (This was one of many times in life my brain consciously refused to believe the words I’d just heard.) It seemed that way at first with the appointments, the surgery, and even now it takes more time to deal with than I like.

But just how much of your life should any chronic illness — or any other life issue — take up?  Initially there are the cycles of grief, loss, anger, bargaining and numbness that you need to go through, and that recur even years later.  Yes, I’m spending a  lot of time reading and thinking about cancer in general and breast cancer specifically. This week, I’m puzzling over the news of a woman winning her lawsuit against the manufacturer of Prempro, that one-time popular hormone replacement therapy. She ended up with breast cancer and the jury has awarded her 3.5 million dollars. And I wonder: what’s the difference between hormone replacement therapy, which is now implicated as a cause of breast cancer, and birth control pills, which don’t appear on the lists of risk factors for getting the illness.

This disease caught me by surprise, sneaking up on me without warning while I was planning for heart disease, osteoporosis, hypertension, or any of those other illnesses that show up in my family tree. But every morning there are the two runs to the bus stop for the kids, managing appointments, mail, and phone calls (even scheduling the plumber and talking with the piano teacher during the infusion session), meals and dishes, cleaning out gutters, supervising newspaper students, preparing for my daughter’s birthday, planning holiday events. The illness has obviously made time for me, but I don’t have time for it. (Oh, go ahead, quote John Lennon if you must.)

But while we’re on the subject of time and seasons —

While putting away our Thanksgiving decorations this week, my son and I were taking down the garlands of shiny fall leaves we’d wrapped around the stair banisters.  The garlands are old and the leaves sparse, and as we worked more leaves fell off, leaving mostly a long shiny string bereft of foliage. I commented to him that maybe we should just get rid of the garlands, since they are so bald now.

He responded, “Not as bald as you, mom!”

Nothing like a 9-year-old to keep things real.

Here’s an inventive musical interpretation to start your Christmas season right:
http://www.metacafe.com/watch/2825215/glass_harp_dance_of_the_sugar_plum_fairy_tchaikovsky/

Advertisements

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.