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 Hummingbirds’ Reminder

They’ve returned — two of those little green bodies hovering over the feeder that hangs out on the deck.  I haven’t seen the hummingbirds for a couple months now.  Even the over-wintering Annas went off to some hidden place for awhile.  But now two return, and they remind me to write, to keep the thread of life going, to tap into it regularly, as I do through writing.

I am still trying to adjust to the land of “survivorship,” as this period after the end of cancer treatment is called, rather like the “fourth trimester“ of pregnancy, when the birth is over and you‘re wondering what to do with that baby you spent so much time preparing for.

It’s a curious period.  There are days that bring the clouds of uncertainty and trepidation, and the ones, like today, when all feels right. Not so different from life before cancer, actually, except for an increase in the weight of uncertainty.  I go about my days much as I did before, and even took my roller blades out this morning. Really, there’s nothing else to do but attend to the regularity of phone calls, grocery lists, family responsibilities. Odd that a disease can appear in your life without warning, not even much discomfort, take you down a path of slash-and-burn treatment harsher than its presence, and then seemingly disappear, leaving you to wonder just what it was that derailed the last 10 months of your life.

Ten months.  Time enough to have a baby in. Despite its equally rigorous demands on the body, though, pregnancy usually ends with a wonderful, tangible presence.  This cancer?  Well, I’m still not sure what it’s left me with.

Speaking of pregnancy, a recent meeting about breast cancer held in Barcelona showed that it’s okay for women to become pregnant after having breast cancer. I’m having trouble conceiving (pun intended) of those two concepts in the same setting — pregnancy and cancer, cancer and pregnancy. Surely there was once a time when these two events were never related.  We still think of cancer as a disease of aging, but I’ve heard or read of a disturbing number of cases in younger people — lymphoma in 20-year-olds, breast cancer in women in their 30s, colon cancer showing up in a 42-year-old woman.

On Monday I attended a workshop at Harmony Hill, a lovely center near here that offers free retreats for cancer patients (http://harmonyhill.org/).  Of the 10 participants, 4 of us were under 50. One woman was diagnosed with breast cancer at age 40. Another had uterine cancer in her 20s.  A third said that, because of her family history, she knew she’d end up with cancer but just didn’t know when.  She’d gone through a double mastectomy and reconstruction.  The woman sitting next to me, who had driven up all the way from Oregon,  had gone in for her first routine colonoscopy and came out with a diagnosis of Stage 3 colon cancer.  This is no longer a disease of old age.

Scientists at that meeting in Barcelona pointed out the misconception that breast cancer most often arises because of genetics. (It‘s that misconception that kept me from thinking I was at risk.)  They reported that  up to a third of breast cancer cases could be avoided with lifestyle changes:  eating better, exercising more.  According to their statistics, the countries of Europe have 421,000 new cases annually, with 90,000 deaths. In the U.S., those numbers are 190,000 new cases and 40,000 deaths. With its larger population,  Europe’s numbers overall don’t turn out to be as bad as they look at first glance, but the rates of breast cancer in France and Britain are statistically higher than in the U.S. The recommended lifestyle changes probably could make a big difference overall, but what about those who were already following most of these guidelines and still ended up with the disease?

The retreat I attended turned out to be a good experience. Lots of information about ways to manage stress — yoga, relaxation techniques, visualization (that “woo-woo stuff” as the instructor called it), — and the chance to walk a labyrinth, but I headed there with those same ambivalent feelings I had when attending the support dinner last fall.  It’s good to know these services are available, but it’s not good to be in the club that needs them.  In attending these events, I am forced to don the label of cancer patient (a label I can hide now that my hair has grown back).  Like any other label — autistic, diabetic, hearing impaired — it’s a double-edged sword.  In labeling myself and talking about this disease, I have received tremendous support. But to talk about it is to announce to the world that I have had cancer, and I wonder, once taking on that label, is it possible to lay it aside?  When people see me, will their first thought now be, “Oh yes, she had cancer”?  Though I am not the disease itself, it has certainly made its mark on me and part of my life will be inextricably linked to that experience. I’d like to know that I can, at some point, put this label away, like an old sweater set in mothballs in the closet. Not to be forgotten, but not to be defined by it.

Besides, if I’d had a choice in the matter, I’d rather have picked one of the problems described on this website:  http://www.bonkersinstitute.org/index.html.  They’d have been a lot more fun.

Have a Laugh on Me

Spring is gorgeous here, cherry and pear trees in full bloom, tulip buds coloring up, and a new hummingbird at the feeder.  The longer days are rushing by. Our house is decorated for Easter and still sports the balloons and flowers some dear friends gave me at a celebratory lunch after the end of radiation therapy. I am still  immersed in post-cancer reading but am trying to balance it with humor.

Last week, I attended a 1-day conference for cancer survivors.  Not just breast, but any type of cancer. Lots of sessions to choose from — exercise, mindfulness, sexuality after cancer (with toys and samples!) and yes, humor.  This session included a story about Linda Hill, who has survived four rounds of cancer and started her own line of T-shirts. The slogans on these shirts include:

I lost my colon but I’m still full of crap.
Of course they’re fake, the real ones tried to kill me!
Mastectomy: $12,000. Radiation: $30,000. Chemotherapy: $11,000. Never wearing a bra again: Priceless.

(I was reviewing my insurance statements this week and can attest to the fact that the cost of radiation is indeed $30,000 or more.)

If this sort of humor interests you or you just gotta have one of those shirts, you can find more on her web site:
http://www.somuchmoreonline.com/index.php?option=com_virtuemart&page=shop.browse&category_id=28&Itemid=53&TreeId=1

The keynote speaker at the conference was Debra Jarvis, a chaplain who works at the Seattle Cancer Care Alliance. She’s written several books about dealing with chronic disease and based her talk on her own experience with breast cancer.  But before she began her message, she stepped out from behind the podium , grabbed her right breast with one hand and pointed at it with the other, saying “You want to know which one is fake?? It’s this one!”  And then she calmly stepped back behind the podium, explaining that, if she didn’t point out the reconstructed breast early, the audience members would spend most of her speaking  time trying to figure out which one it was and miss the whole talk.

I have to say it — her gimmick worked, and the audience was very alert. She had humorous stories to tell, but her message was serious:  It’s not about the hair. We all have to find our own meaning in the dark experience that shakes us awake, and once awakened, we must not go back to sleep.

Here’s a link to her website: http://www.debrajarvis.com/
And a hilarious article she wrote for Cure magazine about dealing with a certain intimate problem in the aftermath of chemo. Beware, it‘s a little racy: http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1246

The Association for Applied and Therapeutic Humor defines therapeutic humor as “any intervention that promotes health and wellness by stimulating a playful discovery, expression, or appreciation of the absurdity or incongruity of life’s situations.”

Yeah, well, nothing like a boring definition to take the fun out of things.  Thankfully, the association itself appears to be little more joyful and lists lots of resources and links to fun (if slightly academic) materials and websites.  I plan to check out the link to Clowns Without Borders.

For additional overanalysis of fun, there’s also the International Society for Humour Studies (www.hnu.edu/ishs/) with its many links.  One of these is to a scholarly organization called the International Society for Luso-Hispanic Humor Studies, which tracks the study and appreciation of humor wherever Spanish and Portuguese are spoken.

I’m glad to know people are laughing in other languages. But the names of these organizations make me think the members have missed the point.

So if what you really want to do is laugh, not study it, there’s the World Laughter Tour (www.worldlaughtertour.com).  This group tells us that April is humor month (get ready! They‘ve got free resources on the website), and World Laughter Day is coming up on May 2. And if you want to join a laughter group, get in touch with them. Think globally, laugh locally.

Now that’s my kind of support group.

Radiation is Not the Picnic They Promised

March already and I can’t believe it — that time has sped by and STILL I‘m undergoing treatment. Sigh.

Madame Spring has taken center stage out here. The cherry trees are beginning to bloom. The hummingbirds have disappeared, but, o lordy, the frogs are a-singin’ — so loud, I can hear them in the house with the doors and windows closed.   Such little critters.  Such BIG voices.

No Popsicle report this week, but here’s the Zap Count:  28 down, FIVE — only FIVE — to go.

And boy am I glad. At this point, the whole left side of my chest is red and itchy. The underarm is seriously irritated and that irritation now encompasses the back of my left shoulder, which also displays little red dots that indicate (as the nurse described it) inflamed hair follicles.  I’m on my second tube of hydrocortisone cream and aloe vera as well. The radiation visits have gone like clockwork, everything is progressing well, but this isn’t like any picnic I’ve ever been to.  And there aren’t any pieces of cake either.  I’ve developed a sensitivity to any whining motor noise reminiscent of the sound of the linac, which unfortunately includes the sound of the automatic hatch closing on the back of my car.  To that, add the still achy hips and legs (shoulders now too), and the continuing flares of induced menopause, without my usual exercise to mitigate things (the skin and other troubles prohibiting much concentrated activity), and I am (in case you hadn’t noticed) a mite irritated.

Last week, the technicians and Dr. W began to prepare me for the change in the treatment plan.  Today, blessedly, was the last of my baking on the large scale. Tomorrow starts the “boost.” For this, I’ll switch to a different room, a different machine, turning left instead of right after the hallway from the fish room. The new machine will douse the scar left from surgery with electrons rather than the photons I’ve been targeted with till now.  To lay the plan for the boost, Dr. W drew more magic with her black marker at last week’s visit.  I now have two concentric shapes outlining the scar on the top of my left breast.  The outer one is a large oval; the inner shape reminds me of Nebraska.  So now you can picture it — a lobster-red background outlined by tattoo dots on which lie two heavy black outlines, a nipple, and a scar.  A couple of bolts for the neck and Frankenstein lives again!

Yep.  Irritated.  That’s what I am.

After Dr. W finished drawing the geometric shapes on me, she told me to try not to disturb them with either washing or the ointments I’m applying to the skin.  As she stumbled in her explanation of what to do, I completed her point.  “So, you want me to color inside the lines, is that it?”  She nodded and smiled.

The good thing is the hair.  Despite what all my photographic play in earlier posts might indicate, the loss of hair was never about identity.  On a woman, baldness — and the scarves and hats used to disguise it — becomes a beacon flashing out the message: “Here is a victim of the treatment for cancer.  Have pity!”
Men can be bald without comment.  Women can’t.  “How brave!” the audience said when Melissa Etheridge performed bald at the Grammy awards show a few years back.  But Michael Stipe of R.E.M., and Bruce Willis, well that’s just their style.

The only problem is that the hair issue isn’t consistent.  Many people who undergo chemotherapy don’t lose their hair, and yet deserve the same concern as those who do.  Existence can indeed be deceiving.  Last week, I asked Dr. W if we should assume that my cancer is gone.  She responded instantly, automatically, “Of course! We don’t see it anywhere.”  Maybe not, but we all know that things exist even if you can’t see them.  Though modern medicine doesn’t show any evidence, any of us who’ve gone through serious medical treatment know that, no matter how modern, there’s much medicine can’t do.  Still, I’ve done all I can to wipe out the disease, and so it’s now a matter of my mental choice. I can go down the path of worry and anxiety, wondering if the cancer will return. (Many people report feeling betrayed by their body when they get their diagnosis.  I don’t think my body betrayed me, but instead was overwhelmed by the errant growth of its own cells.)  Or I can choose the more uplifting path reflected in the tone of Dr. W’s response. And so, I’m putting my heart in the trail of her words.  Can I assume it’s really gone? “Absolutely!” she says.

And just to help keep it away, I decided to go down that spiritual path to the crystal shop in town, the dark, dusty one next to the mailbox shop on State Street.  I was curious to see if the information I’d read in the book could play out in reality.  The shop looks to have been around a long time.  Dream catchers hanging in the window.  Long glass cases packed full of trays with different types and colors of rocks. The man behind the counter, weathered by many years, wore a blue flannel shirt, his grey ponytail cascading down the back. He was quietly reading when I came in, but didn’t speak till I greeted him.  The first day I simply asked questions, trying to ferret out his attitude and decide if these rocks were for real.  He seemed authoritative, answering what questions he could and referring to his collection of reference books when he wasn’t sure of something. He wasn’t weird or pushy, and so the next day I brought back my book on crystals and showed it to him, asking which ones would work for me, to dispel negativity and to help me heal from breast cancer.  He reviewed my book, consulted his own, and then finally called his wife who, he said, knew more than he did.  She told me that any of the black rocks would do for dispelling negativity — hematite, laboradite, onyx — and THE crystal for women,  even those who don’t have breast cancer, is rose quartz — for balance, for healing.   Wouldn’t you know, it’s the pink rock.

If you’re interested in tracking down some rocks of your own, take a look here: http://crystal-cure.com/gemstone-meanings.html

Who knows.  One might be just right for you.

Of Presidents, Valentines and Shamans

President’s Day. Another one of *those* holidays.  Here in Olympia, it’s another day to go shopping. A local store opened at 7 a.m. for their special sale today. I can think of nothing that would get me out of bed to go shopping at 7 a.m.

If I still lived in Laredo, Texas, however, I might be moved to get up early, at least in honor of George Washington‘s birthday, which is what President‘s Day used to be.  That’s a town that knows how to celebrate this holiday with style. The festive events are scheduled over the course of a month and include a historical George Washington performance, a Comedy Jam for George, and the Princess Pocahontas Pageant and Ball (to see an example of the elaborate costumes, go here: http://www.wbcalaredo.org/home/events/princesspocahontaspageantandball.html)

There’s also a Founding Fathers 5K run (imagine Thomas Jefferson running in tights and wig), a parade, the Society of Martha Washington Colonial Pageant (as equally extravagant as the Pocahontas ball), and a jalapeno festival, among other events.  Never mind that Laredo was established by the Spanish in 1755, when George Washington was only in his 20s. Never mind that George and Pocahontas never met and probably never even saw a jalapeno pepper. As I learned the year I lived there, it was a great excuse for the town to have a party and my students to miss classes.

Rain continues off an on here, and in Vancouver where the Olympics are underway.  We’re about 300 miles south of that city, and can actually say we’ve been skiing at Whistler, where the ski events are taking place. One hummingbird, Robin Hood, has reappeared sporadically to visit the feeder.  In addition to crocuses, we now have some early daffodils blooming.

My big flower mystery, though, is an interior one.  On Friday, the UPS truck arrived in the driveway and, after tossing our dog the obligatory treat so he could get to the porch intact (the dog picks and chooses when he wants to be a watchdog, so the deliverymen always come prepared with treats), the driver left a long box outside my door.  Inside were a dozen gorgeous red roses with a card that read Happy Valentine’s Day.  The trouble is, I don’t know who sent them.  My husband claims it wasn’t him, and there is nothing on the package or card to indicate where they came from.  So  — perhaps I have a secret admirer?  Or perhaps it was one of you? Anyone want to claim credit???   (I’ll never know if you’re fibbing!)  Wherever they came from, they brightened my day.

The Zap Count: 18 down, 15 to go.  I’m past the halfway point.  Yippee!!!

My visits to the radiation center progress routinely. In, out, zap, zap (and zap and zap). My brain goes numb — intentionally — during the treatment, and I listen to whatever plays on the radio that day. A little Barry Manilow, some Whitney Houston (incredible voice, too bad about the drugs). Today it was the Eagles and Phil Collins.  Looks like we’re moving up to hits of the 80s.

Though the treatments are physically far less difficult than undergoing chemotherapy, I am burdened by the daily reminder of this disease that my visits bring. The treatment period is much shorter than that of chemo (6 and a half weeks vs. 24), but I’ll actually make more trips to the radiation center (33 total) than I did to the infusion center. The technicians tell me that some people fall asleep on the table during treatment, and some actually snore.  The most excitement I’ve had was the day a technician accidentally pulled off my gown.  She had been reaching up to adjust the disc of the linac and caught the edge of my gown with her bent elbow.  When she moved away, so did the gown — rather like whisking a tablecloth off a table.  The technicians apologized, of course, and the next day we made a joke of it. Today I suggested we pretend the linac was just a fancy sort of tanning bed.  The technicians guffawed and said, “You’d get one strange-looking tan here.”  True, but I still think the room could be dressed up a bit with palm trees and beach umbrellas painted on the walls.

Dr. W says things are going well.  I’m starting to see redness in the skin of the treatment area, and my left armpit feels a bit swollen and uncomfortable. My body continues to work out the remnants of chemotherapy, a certain sort of heaviness and stiffness in the hips and legs, and I‘m told it can take up to a year before I feel normal, though by then I probably won‘t know what normal was.  On the bright side, my eyebrows and lashes have begun to reappear. And on Friday, the radiation technicians handed out Valentine’s chocolates to us patients.

Heading further down the path of healing methods, beyond the crystals and color I mentioned last week, I came across a publication called the New Spirit Journal, which is published in Seattle. It contains articles and advertisements from different types of healers in the area, everything from the Shamanic Herbal Tradition of the Wise Woman to balancing your doshas with music (the three primary doshas being earth, wind and fire — now you know where that band got its name).  Many of these modalities derive from ancient practices and focus primarily on keeping the body’s energy channels open.  My massage therapist has incorporated a bit of Reiki into the sessions, and I’ve found that it seems to increase the positive effects of the massage, making my body feel lighter and “clearer“ afterward.  Reiki is an energy therapy from Japan that involves the practitioner laying hands on certain areas to help open energy channels and promote healing.  Acupuncturists clear blocked channels with needles.  Practices such as tai chi are intended to keep the body’s energy flowing. You have to think that there’s something valuable in these techniques if they’ve been passed on through the centuries.

But as with things like used cars and appliances, it’s caveat emptor — buyer beware!  Among the classified ads at the back of the paper is one by the Reiki Ranch, located a little south of here, where you can become certified in Reiki and, while you’re at it, learn techniques for ghost-busting and ridding yourself of monsters and spooks. And then there’s the man who bills himself a psychic, clairvoyant and healer, who just also happens to be an interior designer.  Not one to miss an opportunity, he can do readings over the phone too. An ad for a different place points out that if you can’t actually pay for the classes at a place called Peace Communities, you can barter for services while you earn your “peace points.”   Trade a little housecleaning, earn some peace points….

In lieu of photos this week, here are links to a couple humorous sites I found while surfing:

1.  For those of you who, like me, can’t get your brain to stop whirring sometimes, take two cheap words of advice from Bob Newhart : http://www.youtube.com/watch?v=T1g3ENYxg9k
2. And here’s something for those of you who get hungry while studying genetics.  Look for teeth marks on the short ones: http://www.seriouseats.com/2009/10/gummy-worm-chromosomes-art.html