Octobra and Tutus: The Pink Month Revisited

Portrait of a young girl in pink dress.

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.

Of Hummingbirds and Rollerblades

In this post, a collection of items related to my journey, I begin by marking a sad ending.

Last week, as my son and I sat outside absorbing some long overdue sunshine on a quiet summer afternoon, we noticed something under one of the deck chairs — a small, still, feathered body lying limp in the shade of the chair. Without needing to look closely, we knew instantly what it was.  The hummingbird must have collided with a plexiglass panel on the deck. With great sadness, we placed the tender bird in the grave my son dug near some flowers in the yard, and he suitably marked the spot with a declaration of truth.  Here, indeed, lies a hummingbird, one of the companions of my year’s experience.

In my e-mail last week, I received a link from a friend. You know those links, the ones designed to get you to sign a petition about a particular political issue. There are too many of these petitions to keep track of, and you can never be sure whether  the petition arrives at its destination. This link, however, connects to a petition to prevent what’s being called “drive-thru mastectomies.”  In the constant battle between health care providers and insurance companies (which will certainly not end despite the new federal legislation), the insurance companies are wanting to shorten the time a woman is allowed a hospital stay after a mastectomy to 48 hours. Now anyone who has undergone major surgery of any kind, not just mastectomies, knows that it is beyond ridiculous to expect patients to be ready to go home in such a short time. I signed the petition, hoping never to have to fight that battle myself.  If you’d like to sign, you can find the petition here:

http://www.mylifetime.com/my-lifetime-commitment/breast-cancer/petition/breast-cancer-petition?q=my-lifetime-commitment/breast-cancer/petition/breast-cancer-petition

If you’d like to verify the petition or read the history of the legislation behind it, which has been stuck in committee in Congress for years, you can go to Snopes.com: http://www.snopes.com/politics/medical/mastectomy.asp

If you’re not familiar with Snopes, you should be. It’s the best site to fact-check the various e-mail petitions, chain letters, and urban myths and legends that circulate in cyberspace. (The name of the site comes indirectly from a family of characters in William Faulkner’s novels. If you know those characters, you know the irony of the name for the site. The Snopes’ would never be clever enough to think up such a service. In fact, they’d likely contribute to the legends found there.)

Last week also brought a few spots of humor.  A woman in the U.K. sent me the link to her blog about navigating chemotherapy with style and humor.  You can find her here: http://glamotherapy.wordpress.com/

And I credit my brother for sending me this link, which is too good to save for its corresponding holiday:

The Dad Life: http://www.youtube.com/watch?v=DOKuSQIJlog&feature=email

And here, for the moms, is the companion piece:  http://www.youtube.com/watch?v=80olbDws8r0&feature=related

At the ending of this post, I’d like to mark a couple of beginnings. First is a nod to Western Washington Oncology, the center where I have undergone treatment.  The staff and physicians at this center are the ones who saw me through chemotherapy and radiation and connected me with all those supportive ancillary services — massage and Reiki, acupuncture, naturopathy, yoga for survivors, and a counsellor , all under one roof, — which have made the burden of treatment easier to bear. As of next month, patients who are newly diagnosed with cancer can have an initial meeting with their entire medical team and support staff, which includes a patient navigator to shepherd them through the overwhelming and complex maze of cancer treatment.  My conversations with friends from other parts of the country indicate that such an approach is not common. So here’s to a new way of helping patients at perhaps their greatest moment of need.

And finally, with the return of summer and my strength, I have begun again to don my rollerblades.  Here’s to many days of  zipping ‘round parking lots in the sun.

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.

A Shower of Hair

Sorry for the delay in getting out another update.  Last week got a bit busy, but I hope no one was worrying that something awful happened to me. If fact, it was good stuff — a nice visit with one of my sisters.

First off: The Popsicle Report

At last week’s infusion session, it was just one popsicle — but bigger.  Rocket-shaped on a stick and colorful.  A red tip, green center and orange bottom.  Dunno what it was called but the green part tasted like nothing I’ve encountered in the land of popsicles. (In other words, I wouldn’t recommend it.)

This week, they forgot to give me the popsicle when the infusion began, so my husband ferreted one out of the freezer they keep stocked with goodies for patients.  A blue one in a tube this time.  He couldn’t have one though, since the goods in the freezer and refrigerator are only for patients.  Well at least I have SOME advantage!

I’m feeling pretty good and am going about my life much as usual.  (I have kids. I have to.) I developed some small sores in my mouth, which could be just one of those normal things or a side-effect of the Adriamycin. I’ve been doing the daily mouth rinses to prevent them — a baking soda and salt solution that reminds me distinctly of the homemade version of toothpaste we used as kids.  As long as the sores don’t continue or get in the way of eating, I’m not going to worry too much about them. I’m also going to physical therapy twice a week to get my left arm back to normal from the surgery.  So far, they haven’t hurt me too much.

Part of my energy level may be due to the steroids (dexamethasone) they give me before the infusion. They’re intended to prevent allergic reactions and boost the effects of the antinausea medicine.  The added benefit is extra energy (prompting the nurse’s story about that patient and her 3-day housecleaning frenzy), which may be masking any fatigue I’m having. I’ve noticed that my spirits tend to sag toward the end of the week, and even though the infusions have gone well so far (fingers and all other appendages crossed), Sunday brings a sense of dread.

My hair has begun to come out.  Last week, I started noticing more hair than usual in the shower drain and in the comb.  This week, it’s even more.  I counted the hairs on my pillow a couple mornings ago: 104. No bald spots yet, but it’s definitely thinner.  I figure I’ll need a shave (but no haircut) maybe early next week.

I’ve got mixed feelings about the hair loss.  They guaranteed I would lose it, so I’ve known it’s supposed to happen, and it’s a good thing that it’s a process, not an overnight event.  The fact that it started later than those 19 days the doc predicted had me worried (Were the drugs working? Had something gone wrong?).  Turns out that, with the weekly doses, the process starts later since the individual drug doses aren’t as strong. I am alternately relieved, saddened, and annoyed by the hair loss.  OK, the “party” has started –’bout time! – but the gentle flick against my neck as another hair falls is sobering.  And then, growl, when I stand up straight from brushing my teeth, there’s MORE hair in the sink.  I’m starting to understand how guys feel when they lose their hair.   Many women will say they don’t mind if their male partners lose their hair, but when it comes to losing your own, well, that’s a different story.  At least I know that this is temporary.

As I’ve shopped around for ideas for headcoverings, I’ve discovered a few things.  First, I look ghastly in baseball caps, even with hair.  Sames goes for those quasi-safari hiking hats.  My daughter was helping me try on hats a couple weekends ago, and we found online a neutral one with a small brim that looks OK.  She adorned it with a raspberry colored ribbon to dress it up.  On the Internet, I found a website that stocks an amazing assortment of products for chemotherapy patients:  hats, wigs, scarves, and even false eyelashes and eyebrows. Discovering the site was heartening (“Wow, look at what someone has done to put this all together for cancer patients!”) and saddening (“Wow. Look at the reason I’m viewing this site.”)

But I figure there are advantages to hair loss:  I’ll never have to worry about good hair days (don’t think I had many of those anyway) or bad hair days.  All my days will be no hair days. (Hair today, gone tomorrow — lots of potential for jokes and wordplay there.) Lots of money saved on haircuts and hair-care products.  For some people, that alone could improve their economic situation.  Less time in the shower (no hair washing OR shaving — we’re talking *total* hair loss with the Adriamycin) and no more deafening hair-dryer noise.

I can experiment with scarves, hats and other headgear.  I could try out some wigs for new hairstyles or those times when I may want to be incognito.  Maybe a Michael Jackson look, in honor of his passing?  Kim Jong Il? My mother suggested I get a black wig so I could look Japanese.  But there ain’t no way with this Roman nose and these blue eyes that anyone would ever mistake me for Japanese.  A Barbra Streisand wig might be more,uh, fitting. A few people have told me that, when the hair comes back, it comes back “better.”  And I read that it often comes back a different color — sometimes gray (I could adjust to a nice head of *silver* hair), sometimes black.  So maybe I’ll get that Japanese look after all.

If you know of anyone who might be interested in these postings, please feel free to send them the link to this blog.  And if anything I’m writing prompts you to write, by all means do so. That contact reminds me that the good in life continues, even when the circumstances grow heavy.

Chemotherapy and Dog Days

One down — 23 to go!!

It’s 6 p.m. and I’m sitting here feeling…..quite normal, actually.

I had the first infusion of the adriamycin this morning.  I decided on the once-a-week “nutrition” program, so I’ll get the adriamycin (I’m nicknaming it Adrian — at the moment, it really does seem like a friend to me — and good friends don’t mind if you curse them out later, do they?)

Anyway — Adrian every Monday (except next week when we’ll be visiting family), and daily Cytoxan (doesn’t that one sound ominous) by mouth for 12 weeks, then switch to Taxol.  They’ve backed me up with 3 — count ’em THREE — antinausea meds.  I had to have a 10 minute conversation with the nurse to figure out what to take when. (Her best tip:  If the food doesn’t look good — take the drugs!)  I start the Cytoxan tomorrow.  So I’m sending this out while I feel OK.

My husband took me to the infusion center and hung out to make sure they did everything right.  Good to have a physician and perfectionist in the house just now. He pulled the drainage tube out last Friday, after we watched the 5th Harry Potter movie with the kids and before we went to bed.  Just a little quick surgery in the bathroom before bedtime.  The drain had clogged by that time anyway.

Busy day at the infusion center, and it took about 2.5 hours from seeing the oncologist, to setting up the infusion.  The infusion itself took about 10 minutes. I sat next to a man who’s been doing his routine for 10 months, sometimes daily.  Stamina.  That seems a key word.  The appointment time should decrease as we get the routine going.

Fortunately,  I had my college student back-up for errands and other duties today.  And perhaps more fortunately, I realized I’ve got some helpful subscriptions that arrive in my e-mail box strategically on Monday.  So, for those of you who haven’t yet discovered the Ironic Times and Uncle Jay, I’m putting the links here. If you like what you see, you can subscribe too.

http://www.ironictimes.com/ (Don’t miss the ad at the bottom of the first page.)

http://unclejayexplains.com/2009/06/28/uncle-jay-explains-july-4th-special/
(Can’t wait to see what Jay has to say about Republican governors)

Fingers crossed —  and so many thanks to all of you for your concern and uplifting words.  It helps me get through those anxious moments.

P.S.  If you like, you can send my dog good vibes.  It’s his 5th birthday today (My son says 35th if you do the dog math).  Here’s to a long happy life for the both of us.

She’s Radioactive

After the dinner hour.  My daughter made the dinner tonight. She, my husband and my son ate at the regular table while I ate at the counter in the kitchen. Gotta keep 6 feet of distance from the kids till midnight, due to the isotopes from the bone scan today.  My son thought I might be glowing when I got home. Nope kid, I won’t be your nightlight tonight.

I actually dozed off during the scan. (Not been sleeping so well recently.) Much as I’d rather not be visiting medical offices, I have to say that the staff and docs so far have been wonderful.  Explaining things, making me as comfortable as possible. Courageous people helping folks like me.  Priceless.

The good news for today is that the bone scan is OK.  Tomorrow night we head up to Seattle so we can see someone at the Seattle Cancer Care Association on Wed. morning.  Second opinion. The word we got from the contact at the Mayo Clinic is that the treatment plan the local oncologist has laid out is the same as they would do at Mayo.  Unfortunately, the triple-negative type of breast cancer, which is what I have, is aggressive and obstinate, so no hormone therapy (tamoxifen, herceptin, etc.)  Just straight-on chemo and radiation.

Thursday brings another trip to the hospital — outpatient — to install a portal in my chest to be used for chemotherapy. They tell me it’s easier than injecting everything repeatedly into arm veins.  My arm veins have been poked up quite enough recently. On Friday I’m due for a PET scan, which checks for any suspicious activity in soft tissues.  That should be the last of the diagnostic tests.  After that, we lay the plan for chemo.

I’ve been told that, given the agents that will be used, I should expect to lose my hair.  I’m thinking the kids can do some artwork in permanent marker on my scalp. My husband thinks we can all shave our heads. Geez — the things you have to do to look for comic relief. Last week, when I was sitting in one of the waiting rooms, I heard a cell phone go off. The phone belonged to a man easily in his 60s.  The ring tone?  Tarzan’s yell.

Ahh –ah-ah-ah-ah—-Ah–ah-ah-ah!

Maybe I should take that yell as my motto.