Be Aware, Be Very Aware

You’ve no doubt heard the term awareness with regard to a number of topics: trans fats, mental illness, pollutants in the water and air, body fat, smoking, the decline of the honeybee. Awareness is something we’re always trying to raise. So many issues to be aware of, too many voices clamoring for the same audience. Impossible to keep up.

The term cancer awareness attempts to make the general, unafflicted public more aware of cancer — its causes and risk factors, the effect it has on society. A recent article even pins down the cost of cancer in hard numbers: nearly a trillion dollars lost in the worldwide economy from premature death and disability due to cancer. With this sort of news, how could anyone not be aware of the impact of cancer?

My own awareness, though, is now of a different sort.

A little more than a year ago, I was made painfully aware of cancer, something I didn’t think would ever come to visit me.  And now that I’m past the intense treatment, muddling along with my new hair in the stream of “survivorship,” I’m able to forget, for long periods of time, that cancer indeed plays a role in my life.  (That’s the damndest thing about cancer.  Even if it never comes back, it still owns part of you because you can never be sure.)

But then, during the course of an average day, I am once again made aware.

I’ve noticed now a habit of misreading words, a subliminal prompting perhaps.  On the computer screen, I read the button on a page that says cancel and momentarily see cancer.  In looking through the stack of folders on my desk, I come across the one labeled — what’s that? — cancer? No, no. That’s Career written on that tab. Maybe I just need reading glasses.

On a recent trip east with my family, we went to an amusement park to ride the roller coasters. Standing behind me in the line for the Blue Streak was a woman wearing that telltale baseball cap, frail wisps of hair sticking out, and a black T-shirt with one of the current trendy slogans for people affected by breast cancer:  “I love boobs. Let’s save them all,” enhanced by that ubiquitous pink ribbon.

Now I hate the use of that term to refer to breasts. Really, do we want to be calling our body parts by derogatory names?  But I admired the woman’s courage, and rejoiced in being back in the line for the Blue Streak myself, a year after my own ride on the cancer roller coaster began.

Until the moment I caught sight of the woman, though, I had been thinking about how hot it was and wondering how my son would tolerate the ride this year.  Now that I have hair, anyone who didn’t know my story would never guess what I’ve been doing all year.  I thought for a moment about speaking to the woman, but found myself in the quandary that others have likely found themselves in with me.  Do I intrude into her thoughts, introduce myself and commiserate with her?  Or do I let her have her privacy?  There were those who intruded unpleasantly into my space, but I also remember the woman in the red coat who spoke to me of hope and whose message lifted me up. If I spoke to this woman, which role would I play for her?

I’ve become aware, but still lack awareness.

Later in the trip, while mindlessly reading the Sunday paper, I came across a review of Promise Me, a book by Nancy Brinker, the sister of Susan Komen and the one who established the famous foundation.  And there it was again between the Living section and the comics, another moment when cancer intruded and made me aware.

And then again when we traveled on to Washington, D.C.  There I was contemplating airplanes while standing in the crowd at the Air and Space Museum and suddenly I saw four people with T-shirts bearing pink ribbons, promoting various races for the Cure.  (Some race, huh? President Nixon declared war on cancer back in 1971.  Maybe the length of this race explains why there are now more walks for the Cure. It‘s hard to keep a race going for 40 years, even with relays.)

And finally, on our flight back home, I glanced up from my seat to see a woman settling into the seat directly in front of mine. Full make-up and earrings. A head covered with stubble, indicating a recent shave. I sat there remembering how that stubble gets rubbed off pretty quickly.

How could I be sure the woman was being treated for cancer and not just flaunting a lifestyle choice? The flight attendant was extra solicitous, bringing her for free one of those snack boxes they now make you pay for.  Once again, I wondered whether to speak but chose not to, suddenly understanding my own hesitance.  By initiating a conversation, I would drag myself back into the pit that I’ve been managing to get out of for good lengths of time.

Instead, I became more aware of the man sitting next to me, who downed four of those small bottles of whiskey with his Coke during the course of the flight.  I can only guess what particular awareness he was trying to obliterate.

If you really want to get total awareness of cancer and its impact, tune into any of the major TV networks on September 10 to watch Stand Up To Cancer (8 p.m. EST).  You can find out more about the program here.

Looking for My Balance Again

Now this is one of  the holidays I like to acknowledge: St. Patrick’s Day, when the leprechauns appear, if only in our imaginations, and the city of Chicago, city of broad shoulders, turns its river green, on purpose.  This is a fun holiday — not like stuffy ol‘ Presidents Day — along with April Fool’s Day, May Day, and the Japanese holiday of Setsubun (early February, when the custom is to throw roasted soybeans around the outside of your house to dispel demons and the bad luck they bring).  I might just don that metallic green wig I was given.

Speaking of hair — I received a few comments about the photos attached to the last update.  One person said they didn’t look very good.  (I agree.  My regular photographers were off duty, so I took those myself.)  Another thought they were cute.  Someone else said I have that “lesbian look.“ And my brother says I now look like him.

I’ll choose to consider that a compliment.

It’s been a week since the last of the cancer treatments, and I’m starting to realize how all-consuming the trek has been. Now that the trips across town have stopped, I feel rather like the treadmill I’ve been on has abruptly been turned off.  You know that jerky feeling of motion, then sudden not-motion.  You sway, stumble a little, and fumble to regain your balance. And then you stand a moment and wonder, “Now what was that?”  This rebalancing may take awhile. No more blood counts.  No Popsicles.  No zap count. And it seems ages ago that I rode the steroid roller coaster.  Productive though I was during that time, I don’t miss the dexamethasone high.

No more schedules, or measures of progress.  No more counting down days on the calendar. I now enter the recovery phase.  I still apply the skin ointment, though all the redness and itching have gone.  I am still trying to rid my body of the remnants of the chemical overload, and I still — and always will — think about prevention. Though I greatly admire those who have done it, I do NOT want to repeat this particular journey.

In the realm of helping the body recover, I investigated another type of body work last week.  My usual massage therapist, the one who uses Reiki, books up pretty quickly and so, in the interim of waiting for my next appointment with her, I took her recommendation to see a different massage therapist, one who incorporates craniosacral therapy.  This type of therapy ranks among the many approaches to clearing the body’s energy channels, in this case addressing the fluids.  As she explained it, craniosacral therapy is designed to keep the 70% of the make-up of the body — its fluids (spinal, blood, etc.) —  moving unobstructed, in the same way that Reiki works to keep the energy channels clear and open.  It’s a similar sort of laying on of hands.

Does it work?

Don’t know for sure but afterwards, as I stood up to get dressed, I felt a distinct, pleasant tingling just under my skin, and I paused for several minutes to allow the sensation to linger. Now this particular piece of the journey I would indeed like to repeat.

Last week I also paid another visit to the naturopath, who’s scaled back the plan once again: fish oil daily, Vitamin D every other day, and a recommendation for an herbal concoction to replace the Ativan for sleep.  He said I can go back to the CoQ10, the enzyme that bolsters the heart, for about 6 months if I like.  Despite the recent report in the New York Times, he sees no special benefit in taking aspirin, though I’m going to do it anyway since it helps with heart disease — a hallmark of our family tree.

If I want to go beyond that for prevention, he recommended curcumin, also known as turmeric. It‘s a regular ingredient of Indian food, but needs to be bound with an oil to be absorbed by the body.  So my choice is this —  I could either buy the spice and mix it with those shots of olive oil he once mentioned, or I could just buy the properly calibrated capsules from the compounding pharmacy.

Guess which one I chose?

He also suggested a concoction of  “magic mushrooms” as a preventive.  Not the kind that produce hallucinogens, thankfully (the steroid high being quite enough for me), but shiitake, maitake, and a host of others, including something called turkey tail.  And of course this mixture comes in capsule form. There’s no medicinal element  in nature that we can’t try to put in a capsule.

I’m still wading through my stack of literature about the transition period after treatment. So far, I’m seeing a clear distinction drawn between cure and healing, which is good.  One of the booklets produced by the LiveStrong organization (Lance Armstrong’s group) includes a link to a site where you can document your family medical history to generate a health tree: familyhistory.hhs.gov.  I haven’t tried it out yet, but it ‘s probably time to do so.

As for the next steps in my journey, I’m not sure where they’ll lead.  Which way do I go — back to what was before or on to something new?  (Spring implies something new.) Do I act like it didn’t happen — all the while fearing it will reappear at exactly the moment I‘ve finally forgotten it? Or do I just consider this experience a speed bump on my personal highway?  In that case, do I take the exit to hypochondria, imagining that every odd twinge heralds a return to the highway? So many choices. Which way to go?

Stay tuned…..

Champagne and a Torch to Pass

So on my way home from my LAST DAY of radiation treatment on Monday (yippee!), I stopped at the liquor store, figuring to buy a bottle of champagne. Appropriate, I think, considering the circumstances.  I was the only customer there (a good thing considering it was before noon), and there was just one clerk working the cash register. As she rang up the bottle, she asked to see my ID since I was using a credit card.  Unlike other cashiers at other places, she actually looked at the photo on my license and then looked long and hard at me, comparing the face before her with the laminated version on the card. That version has light-colored hair hanging down below her chin.  “Oh, I like the short hair much better,” she said, and went on to talk about how her mother got her hair cut short but she likes her own long hair even though she always ends up putting it up a few hours into the day.  As I listened to her talk, I realized it — I did not have to explain to her why my hair is short.  She assumed it was simply my choice of style, not the repercussion of a long, tiring excursion on the cancer path. And that’s exactly what I let her think. What a relief.

So take a good look at the photos.  This is how I looked on my last day of radiation treatment.

And accompanying me is one of the friends who helped me through.

The last 5 sessions of chemotherapy, the “boost,” started last Tuesday.  The room used for the boost is opposite the one I’d been going to, but it looks very similar. Linac dominating the middle of the room, those same pock-marked acoustic tiles on the ceiling. Honestly, they need inflatable palm trees in these rooms, walls painted in a jungle theme, something, ANYthing to dispel that cold clinical feel (and I have told them so on the feedback sheet they gave me).

The machine also looks similar, but attached to the disk hovering overhead is a short arm that holds a metal cage.  The bottom of this cage is a thick piece of metal with a hole cut in the shape of  the oval Dr. W drew on me last week. The table I lie on has no special backrest — perhaps they’ve already recycled mine — just a sheet to lie on and a pillow to lean on.  For the treatment, the cage gets moved close up, and then the technicians lay a warm orange gel pack across my chest and tape it (and me) to the table with long stretches of cloth tape.  The pack acts as a layer of skin, allowing the electrons to penetrate at the correct depth.  Once the session is underway, the machine emits a subtle fizzing noise.  The whole session takes about 5 minutes.

The doc checked my skin last week and says things look good.  A couple changes — antibiotic ointment for a week under the arm where the skin is chafed, Eucerin cream on the rest of the field, “call if you have any questions.”   The itching is diminishing and, except for the oval area of the boost, the redness is lessening too.  Any skin effects to come will appear within the next week.  After that, it’s the same scenario everyone is advised to follow — stay out of the sun, wear suncreen. Oh, and here’s a souvenir mug filled with candy to take home with you.

It seems too easy.  Go back to life as you used to live it (except for that constant vigilance part).
But surely this can’t be all?  All of the cancer gone, yes, but how do I go back to living as I was before?  The earth has spun, vistas of fear and determination opening up inside me, how can it be as it was before?  I’m not who I was then. And the whole experience taught me that I don’t necessarily understand who I am now or what it is I’ve come through.  So, although the trips to the doctor have ceased, my journey has not.  Now I have to figure out how to be, all over again.  That could be almost as frightening as the illness was.

Fortunately, the oncology center is working on ways to ease this transition back to the future of the “new normal.”  In addition to the naturopath, the massage therapist, and the other services they offer, they are instituting a program for those ending treatment.  I met with the clinical psychologist who is marshalling the effort and came home with a stack of information almost as big as the one I had before starting chemotherapy.  Lots of good resources for dealing with this time that is, as the radiation oncologist described it, almost as difficult as receiving the initial diagnosis. I have been so very blessed to have these resources and so many good people looking out for me.

And now, in turn, I become one of those looking out for others.  Last week, the university where I have been teaching had its annual opportunity for women to read from their own writings in honor of Women’s History month.  I chose to read selections from these updates.  Afterwards, a woman from the back of the room stepped forward and extended her hand, explaining that she was about to embark on the same path — triple negative, no explanation for its occurrence — and had just had her hair cut short in anticipation of its coming out. This is not a torch I would choose to pass.

And maybe, if more facts about cancer and its treatment were made known, there would be fewer torches passed.  I came across an article in the Sun Magazine , an interview with Samuel Epstein, M.D.,  a British physician now living in the U.S.  The topic of the interview was cancer, and how the public is not fully informed of the issues surrounding it, the reasons it develops, and even how the American Cancer Society is not fully invested in finding causes and prevention. Epstein says there is sufficient evidence to show some definite causes of cancer: prolonged use of birth control pills and hormone replacement therapy, high-fat animal and dairy products, hormone-contaminated meat, petrochemicals in the workplace, prolonged use of black and dark-brown hair dyes, silicone breast implants, heavy smoking or drinking beginning in adolescence, inactivity and obesity.   Some of these we’ve heard a lot about, some not so much, and there’s plenty of arguments about what really causes cancer.  But I was struck by the forcefulness of his argument, and couldn’t help but notice the irony of the publication date — March 2000.  In the interview he refers to his prevention program, from his 1998 book on breast cancer, in which he recommends taking aspirin as a preventive.  And here I thought the recent article in the New York Times about aspirin as a preventive was up-to-date news.  If you’re interested in reading what Dr. Epstein has to say, take a look here:  http://www.thesunmagazine.org/archives/842

The cancer may be gone, but my journey continues….

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.

Mad Eye Moody and Survivorship

The last stretch of our week of fine weather today — sunny and in the low 50s.  Tomorrow comes the rain. Meanwhile, back in Ohio, my parents report that the icicle hanging over their front porch is 14 feet long.

Along with many other people around the world, we’ve been spending a lot of time before the TV, watching the Olympics.  My son has developed a fascination with curling, which he now thinks is more interesting than skiing.  (His sister groans and disagrees.)  But he’s not the only one.  It seems Marge and Homer Simpson  have also discovered their own hidden talents:  http://www.hulu.com/watch/125173/the-simpsons-boy-meets-curl

The mystery of the anonymous Valentine’s roses has been solved. No one ’fessed up (though several people said they *wished* it had been them), so I was forced to call the company to divulge the sender’s identity.  Sorry to say, I have no secret admirer.  The flowers were sent by a store that sells pens at a mall near Seattle.  We shopped there a couple weeks ago for my husband’s birthday present, and I had forgotten about the form they had me fill out for a free order of flowers.

OK, so it was a commercial set-up, but they’re still pretty.

Last week’s radiation visits went routinely.  The skin is getting redder and itchy, so I’m supplementing the aloe lotion with hydrocortisone cream. When I saw Dr. H on Thursday, he said everything is going well. That was after he pet me on the head. He said he really likes the way the new hair feels — so soft — when it comes back in.  He and my daughter have the same inclinations — pet and marvel at the new hair.  Rather like people putting their hand on a pregnant woman’s stomach.  I don’t mind being pet on the head (depending on who’s doing the petting), but I *never* wanted anyone touching my pregnant belly.

The week also brought more changes related to the chemotherapy.  My fingernails still look bad, but the aching and stiffness in the hips has diminished.  My belly skin has gotten rough, and I continue to be more susceptible to cold temperatures. My eyebrows no longer need supplementing.  I looked in the mirror one day and thought, wow, what are these grey shadows above my eyes?  Oh!  Those are my eyebrows — they’ve come back!  I now have less of that bald chemotherapy look, am wearing hats less often, and I begin to recognize my former self  re-emerging.

Today was a double-header at the oncology center: a visit to the infusion center and the daily rendezvous with the linac.

The Zap Count: 23 down, 10 to go.

I went to the infusion center at 8 a.m. for a blood count, port flush, and a visit with my medical oncologist (“med onc“ as compared to “rad onc“).  I was the only patient there at that hour, though the nurses were already busy.  Since I was there for legitimate business, I indulged myself with my usual “infusion breakfast.”

The Popsicle Report: Two boxes of popsicles in the freezer, but not my favorites.  These were regular, average color-on-a-stick varieties.  I chose purple.  It went well with the green tea.

The blood numbers are not quite normal (white count 3.4  — normal is 4-11; hemoglobin 10.9 — normal is 11.6 -15.5),  but it’s too soon for them to have recovered totally. Dr. L says things look good, and I can have the port taken out any time I’m ready.  Since the other side of my chest is currently under assault from radiation, I think I’ll wait a little longer. And there’s the readiness to take the mental step.  If you’re going to take out the port, you’ve got to sign on to the idea that the cancer is really gone.

We also talked about the recent report of the possible benefits of aspirin in preventing recurrence  (http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Can_Aspirin_Reduce_the_Risk_of_Breast_Cancer_Recurrence.asp).  The numbers are almost too good to be true — 50% lower risk of recurrence and death — but they shine the spotlight once again on the lowly aspirin, which I figured I’d eventually be taking given the family history of heart disease.  Dr. L pointed out that I’m nearing that age when taking a daily aspirin might be a good idea anyway.  (Hey, wait — in earlier appointments he’s called me a “young woman”!) I’ll see what the  naturopath has to say about it. In earlier appointments, he’s talked about preventing inflammation as a way to help prevent cancer, and there does seem to be a link between the two.  Maybe these findings strengthen that link.  The article indicates that NSAIDs like ibuprofen also seemed to be helpful, but not Tylenol.

The next time I see Dr. L is 3 months from now. No follow-up scans, no routine blood tests. None of these are helpful, scans being too costly and radiation-dense for the scant results, and tumor markers in the blood are unreliable for breast cancer. We assume the chemotherapy wiped out what was there, but there’s no window into the body to peek through to make sure everything’s still clear. So you go through the days keeping watch.  “Constant vigiliance!“ as Mad-Eye Moody shouts at Harry Potter and his fellow students.  “Constant vigilance!“ Between check-ups, and continuously for the foreseeable future, it’s up to me to sense if something is amiss.

As I mentioned before, if it’s going to spread, breast cancer usually heads for the bones, liver or lungs.  So the best I can do is educate myself about what to watch for, and Dr. L spelled it out.  Loss of appetite or weight (indicating liver involvement), a dry, persistent cough (lungs). Bone pain that becomes constant and progresses.  (Thanks to those Neupogen shots, I actually know what bone pain feels like.)  But, he said, the cancer doesn’t go for joints and, for some inexplicable reason, usually doesn’t show up below the knees and elbows.  “Everything else,” he said, “is fair game.”  He told me that 80% of recurrences are found by the patient. So this will be a test of how intimately I know my own body.  I feel as though I’ve just been put out to sail a three-masted schooner when all I’ve ever commanded is a rowboat.   All hands on deck!

Dr. L did not pet me on the head.  He said he likes the hair when it’s just starting to come in, like a newborn’s, and I’m past that point.  “So, what,” I responded, “You’re saying I need a haircut?”

While in the infusion center getting the blood drawn, I asked the nurses how you calculate the length of time you deem yourself a “survivor.”  You’ll hear people say they’re a 12-year or 20-year survivor (I’m aiming for 30, give or take), but I wasn’t sure whether the clock started from the day of diagnosis or the end of treatment.  Eileen, the nurse who presented me with my souvenir T-shirt at the end of chemotherapy, answered promptly, “From the day of diagnosis.”  She said that the term “survivor” (which I believe is now overused, but that’s a topic for another post) has recently been specifically defined by oncology nurses to mean anyone who has received a diagnosis of cancer, from the very day they’ve been diagnosed. So even at the moment you hear the awful news, you’re already a survivor. I’m not sure I agree with that position. How can you survive something you haven’t even been aware of and have not yet been treated for? But by her measure, I am a 9-month “survivor.”  (Nine months on; if I‘m aiming for 30 years, that‘s 360 to come.)

I got news last week that another “survivor” is doing well.  When we went for dinner one night, I encountered the waitress I’d seen months ago at the infusion center when she was tending to her mother, who was being treated for esophageal cancer.  She greeted me with a hug, an acknowledgement of a fellow traveler on the same path.  Her mother, she says, is doing well after 7 rounds of chemotherapy and 35 visits with the radiation equipment.  She was one who had to don one of those white mesh head molds that line the shelves of the linac room. Because she’s claustrophobic, her daughter had to help her on and off the table and talk her through the session.  She got to keep her head mold when her treatment ended, and her daughter is planning to decorate it and hang it above her mother’s bed.  Perhaps the thing will induce nightmares, but maybe its another example of how the human spirit seeks to overcome the dark and frightening.  Large amounts of courage displayed in small but significant ways.

What Color is Your Therapy?

Where have all the hummingbirds gone?  Haven’t seen any for several days, and I even put out fresh food. Maybe they’re seduced by this warm weather we have (thumbing my nose at those of you buried under snow!) and believe spring has come.  Perhaps it has. My crocuses and spring cyclamen are blooming.  Not just up, but tricked out in their bright colors. A few really optimistic people have been riding around with their car tops down.

The Zap Count:  13 down, 20 to go.
Oooh, I like these numbers.  Almost half way, and they decrease much more rapidly than did the ones for chemotherapy.

No side effects yet that I can see, though some effects of chemotherapy seem to be hanging around.  I’ve lost all my eyelashes and most of my eyebrows, though, as you’ll see in the photos, my hair is coming back in.  That’s the conundrum: what’s the difference between eyebrow hair and head hair that one should fall out early and the other come back late?

The radiation routine continues as before — drive in, drive out (some day maybe they’ll have drive thru).  I keep trying to distinguish the technicians, but in their white lab coats and flat-ironed hair (some dark, some light), they look alike to me, and they don’t exhibit much personality in the short time I’m on the table.  Polite, yes, and certainly efficient.  But not a lot to hang a conversation on.  The most I’ve learned from them is that I don’t get to take my custom-molded back rest home with me when it’s all over.  Who’d have thought it — a radiation center that‘s ecologically conscious. They *recycle* the rests, deflating them when one patient leaves and reinflating them to suit the new, uh, customers.  So maybe in this realm, there are the 4 Rs — reduce, reuse, recycle for radiation.

On Thursday, I finally made connections with a few other patients.  There was a short backlog in the Fish room, since it’s the day a number of us see the doctor.  There was the woman about my age who comes and goes silently in her hat or headscarf.  We’re aware of each other passing through the rooms but have yet to speak.  The two older gentlemen were also there — the short one well-groomed and fully dressed, the tall scruffy one not at all bothered by the fluttering of the open back of his gown.

But on Thursday, there were two older women sitting in the chairs, looking eager for conversation, so I joined them.  The woman to my right was happy because this was her last week of treatment, and she was planning to celebrate that and her upcoming 80th birthday with a dinner at the Old Spaghetti Factory.  She did not appear to be 80, but was a vibrant, energetic woman with many things left to accomplish in her life.  The woman to my left, however, looked every one of her 70-some years, and described how she drives herself 45 minutes each way every day because her husband had a stroke and can’t accompany her.  She complained that the radiation was upsetting her stomach, but was glad she was halfway through.  We all seem to be interested in the numbers.

This week I again saw Dr. R, who took a cursory look to see if there were any skin changes, and then fell into conversation with me. My husband had told me that he speaks Japanese, so I asked about that. Like my children, he is “hafu” (the term the Japanese use for mixed-race people).  His American father, like many soldiers, was stationed in Japan and brought home a Japanese wife. He asked to see photos of my children, out of that fascination we all have about identity and appearance, especially when searching for others like ourselves. Dr. R seems to be straddling a number of cultures.  Before he became a radiation oncologist, he was an engineer working for Exxon.

We talked briefly about the series of articles a couple weeks ago in the New York Times about the problems with radiation therapy.  The impact of the articles has led the American Society of Radiation Oncologists (ASRO) to look into the claims and work to reform practices and eliminate errors. Their current fact sheet helps put the issues into perspective and counteract the fears the Times has raised:  http://www.astro.org/PressRoom/NewsReleases/2010NewsReleases/documents/FactSheet.pdf

I’ve been going back to my earlier interest in the idea of healing vs. cure. A friend loaned me a book about healing with crystals, which also covers the use of color and “chakra energies” for maintaining health (Healing with Crystals and Chakra Energies, by Sue and Simon Lilly). These techniques are categorized in that area known as energy work, along with acupuncture, Reiki, and other approaches.  But as with Western medicine, understanding the dynamics of these modes involves a great deal of complexity.

In the pages of the book, I was hoping to find the magic crystal that would cure all my worries. Among them, there’s black tourmaline for grounding, protection, and to dispel negativity; obsidian for transformation; rose quartz to supply restful sleep; pink kunzite to remove emotional debris; yellow citrine to release fear and clear your thoughts; gold to repair damaged tissue (and maybe damaged bank accounts too?); verdelite to realign body structures; and turquoise to purify, bring joy, and boost the immune system. If I were to get all the stones with the potential to help, I’d need a pickup truck to haul them around.  When in doubt, though, amethyst seems to be the general, all-purpose crystal to rely on.  Rather like taking Tylenol for whatever ails you.

I was particularly interested in the information about color and its use for health.  I like pink, but have always begrudged it being the color assigned to girls from their moment of birth (*my* favorite color is blue!). Appending it to breast cancer only increased my dismay. It seemed that all women and their breasts were to be forever cast in pink.  But as my friend pointed out and the book confirmed, pink turns out to have been a wise choice since it’s a calming color that neutralizes negativity or destructive tendencies, and is a healing color, reducing the effects of disease and the fear it causes.  Deeper shades of pink  have apparently been used in prison cells and police stations to diminish chaos and violence.  So think pink — it’s not just for women anymore.

Other colors have other meanings and uses.  For instance, the book says brown is the color of disguise, to hide the true nature of a person, while grey reflects the desire to project emotional stability and detachment (notice it’s the desire to project them, not the actual qualities themselves).  The book notes that grey is the color favored by managers, businessmen and politicians.  Hm.

The power of color can also be used  for health and development. Color overlays on a book page are used for certain types of dyslexia, and wearing colored lenses can reduce migraines.  Perhaps there’s more than one reason to don rose-colored lenses if you suffer headaches.  Yellow can help students concentrate while studying. These powers of color transfer into food too, so that red foods are eaten for vitality (chocolate is considered a red food), orange foods release stress and promote creativity (eat more carrots!), and blue foods enhance communication. Got a presentation to give?  Eat a handful of blueberries beforehand.

The attached photos show where I am appearance-wise now.  You’ll notice a bit of those thematic colors of pink and grey.

I went through chemo and what I got was this lovely T-shirt.

Hair!

Spike.

Stories from the Infusion Center

A gloomy day and week coming up.  From that long freeze and blue sky of last week, we’re now back to typical Northwest grayness and rain, which makes skiers happy because it means snow in the mountains.

Yesterday’s ice and snow had me skiing (figuratively) through the morning much like the beginner I am — frantically trying to stay upright at high speed while the ground slips out and away from me. My daughter thought she had to be at school early and so my husband dropped her off on his way to work. Turns out the weather brought a 2-hour delay at school so I had to fetch her and bring her back. My son was home with a cold, my household assistant was running late, and when it came the real time to take my daughter in, the repairman who’d come to fix the neighbor’s furnace was blocking the driveway, fearing to move forward because his van was sliding downhill on the ice, getting no traction backward to get off it. (I’m reminded of lyrics from a Jethro Tull song:  “Skating away, skating away, skating away on the thin ice of new day….”) By contrast to the events at home, the infusion center, where I arrived almost an hour late, was an oasis of tranquility.

The hummingbirds continue their regular visits, though a hummingbird in the snow appears incongruous to this Midwesterner, where all hummingbirds vacate for the freeze. I discovered that hummingbird food doesn’t freeze, but does make a nice sugary slush. Of course we’ve had to name the two new ones: Tinkerbell and Flip Flop.  This morning, I’m watching another, stranger bird — a float plane — doing low figure 8s over the bay.  Fascinating, but not nearly as gracefuI as Tinkerbell.

This week’s white count, 6.5; hemoglobin, continuing its climb, at 9.4. After the initial burning sensation in my hands last week, there seems to be little neuropathy, but my nails are more spotted and discolored so I’m trying to protect them.  Two more rounds of Taxol to go.

The Popsicle Report: So as I’m settling in to my pod, glad to be able to just sit and breathe, I notice the man opposite me. He is my compatriot — bald (perhaps by choice since he also has a mustache), fingers in pans of ice water, iPod buds tucked into his ears. And on his feet, over his own white socks, he has a second pair of white socks encasing packs of ice. He said that his first series of chemotherapy (another veteran!) bothered his toenails so this time he was trying ice on his feet too. His tall, dark-haired wife was folded into the chair beside him quietly reading. I went off to get my usual “appetizers” — green tea and a Popsicle (blueberry lemon again). Shortly thereafter, the man’s wife left the pod and returned in a moment with a Popsicle for her husband (strawberry orange).  He said when he saw mine, he thought it would be a good idea. I sure can’t argue with that.

My nurse for the day was Therese, a Swiss woman who has worked at the center for 10 years. She is just one of the many nurses at the center, and all are heartening examples of how serious illness can get incorporated into life without dragging you down. These nurses choose to work among seriously ill patients every day. Therese did admit that it sometimes is hard to watch what happens to patients (the nurses compensate with a lot of black humor during break periods), but she said it is a privilege for her to help each patient along the path, no matter which way it leads. So while they work and educate patients about drugs and side effects, they also talk about everyday things: which is better for roasting turkeys, a regular oven or an electric roaster?  They wear smocks adorned with flowers, butterflies, Disney characters and even Betty Boop.  And when a patient finishes chemo, they gather, clap and sing, much like waiters at a restaurant attending to a birthday guest (though none plays the harmonica), a modified version of the 12 days of Christmas (“two needles poking…”).

Can’t wait for my turn to hear them sing.

This week, as she was working with me in her smock covered with polar bears, Therese turned to the small woman seated in the chair next to mine and spoke to her in German.  I’d seen this woman several times before, in her colorful outfits and fuzzy pink-and-purple hat. Today she wore the hat again, with a yellow T-shirt and a leopard-print scarf wrapped around her neck.  She sat in her full makeup and large glasses, quickly crocheting a bright yellow blanket that was spread across her lap. I decided to forego listening to my iPod in lieu of a conversation with her.

Uta had come to the U.S. from Germany after marrying an American military man. Her husband, John, came and went from the pod as Uta’s infusion took place.  He was a short stocky man, clad in one of those signature black baseball caps embroidered with “U.S. Veteran” and “Vietnam” and he had adorned it with color bars, several American flag pins and one pin of the flag of Germany. Several more flag pins were attached to his vest. He was chatty, referred to himself as a “Warshegonian” in origin, and entered and departed our conversation in the same way he exited and entered the pod frequently.

Over the years in her new country, Uta taught herself English, raised 2 children, worked as a nurse’s aid, ran a restaurant, taught German, and cleaned houses (5 a day at the time she was diagnosed). She has been coming for infusions for 10 years for chronic leukemia, which was discovered by accident when she tried to donate bone marrow at the age of 50. Though her treatments have been more intense in the past, she now comes once a month to the infusion center.

Our conversation ranged across many topics: German food (how to make a good torte and a spinach sauce, and the advantage of a breadmaker to knead dough when you no longer have the strength to do so), how women have harder lives than men (John nodded vigorously at this comment) but she wouldn’t want to be a man. Men may know more but women understand more (John nodded vigorously again). We talked about how it is good to be small (she’s no bigger than I), and I told her a comment someone made to me once upon a time: Little people are like chihuahuas; we make a lot of noise because we’re afraid we’ll get stepped on. She thinks the tradition of naming sons after fathers ridiculous. John agreed that it’s a problem being named after his father. The boy feels he either has to live up to or totally deviate from his dad’s performance to carve out an identity for himself.  But that didn’t stop John from naming his own son after himself. And his grandson is now John the fourth.

Japanese do not have this custom of naming sons after fathers, though they do sometimes number their sons.  Ichiro, a common male name in Japan, is known especially here because of the star player for the Seattle Mariners. But the name Ichiro actually means son number 1.  When my son was born, my former boss, who knows the customs of Japan, teased me that we should name him after his father, with the “junior” appendage.  Well, we know how Indiana Jones took to that idea.

Uta and John brought to mind the neighbors I had when I was teaching down in Laredo, Texas, many years ago. Mario was a Mexican-American man who had served in the Special Forces in Vietnam. (He proudly showed me a map of these operations which were  emblazoned on a black T-shirt he wore one day.) His wife Inge and he had met in Germany when they were both working as spies, he for the Americans, she for the Germans. They both liked to tell me their stories, Mario about military service, Inge about her views of life. She recommended that, if I marry, I choose a man who is good looking, makes good money and has hair.  In her opinion, those features were the only things that make up for the trouble they cause. She took pity on me, a single woman living alone, grading essays late into the evenings, and cooked German food for me. (Though I am of German descent I’d never had sauerbraten before.) In trade I looked after their parrot when they went out of town.

But back to the days at hand.

I’m still poking around on the Web for answers to my questions, but spend less time there because the information becomes repetitive (and discouraging) and there’s nothing new for my situation, though there are some promising agents — PARP inhibitors and two types of growth factors — being tested. I did find an article I should have read when it was published, back in 2007, about dense tissue being a risk factor for breast cancer: http://health.usnews.com/usnews/health/articles/070204/12breast.htm.

Like the woman described in this article, I wish I’d known about the implications of dense tissue sooner. I might have pushed for different screening tests, kept a closer watch. This article appeared 2 years ago, but dense tissue still doesn’t show up on those risk factor lists we see today.

At breakfast on Sunday, my son asked the rest of us what we dreamed about the night before. No one else could remember, but I had dreamt that, on the upcoming trip to visit family for Christmas, no one wanted to be in the same room with me because of my bald head (which is not so bald anymore but resembles a newborn’s with faint, fuzzy hair of indistinguishable color). Then I recalled: we’d watched Rudolph the Red-Nosed Reindeer on TV the previous night. Perhaps I was empathizing with Rudolph, fearing no one would let me play reindeer games.

But in the spirit of Christmas (and fundraising), here’s an idea for those billiard-playing aficionados on your gift list who really do have everything. By purchasing it, you can also support research for triple-negative breast cancer: http://www.shopmcdermottcue.com/McDermott/M88B.html.  Pool cues. Now this is corporate sponsorship I can get excited about. Don’t mind the price; shipping is free!

I’ve attached a few more photos. Despite all my talk about hair and baldness (the only obvious outward sign of my current experience), I’m not one to think my hair is my identity. But I have discovered that its loss opens up an interest in playing with identity and disguise.

In this first photo, taken last summer, I tried out the military look.

Here, like Uta, I am disguised as a colorful fuzzy gumdrop.

Besides my fuzzy head, this is the hat my daughter likes to pet.

Here is the fashion hummingbirds prefer.  This is the scarf that prompted the hummingbird attack last summer.

And here, I’m a Muslim on her way to iHop.