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.

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Taking a Detour: The Making of a Hypochondriac

Pukkelpop 2006 tent camp.

Image via Wikipedia

Day 1:

So I’m tooling along Cancer Road. Don’t want to be here, but at least I’m past the multicar pile-up of surgery, chemo and radiation, and I’m picking up speed. Hope the rest of my trip is event-less. Man, it’s hard to drive with your fingers crossed.

Switching lanes now and – oops – wait! How did I end up on this ramp? I’m not supposed to get off this highway for another year or so, when I get to the exit marked “Dramatically Decreased Chance of Recurrence.”

Wait — what’s that brown sign? Looks like the ones that point to scenic attractions. Maybe a welcome sign?

Well, maybe not.

Welcome to Camp Hypochondria

No pets allowed

Aw, rats.

Somebody warned me about this place. A guy on the Road ahead of me. He said he got stuck there, but I didn’t have a clue what he was talking about then.

So here I am now, parked in the middle of a bunch of tents.

Looks like one of those Occupy campsites that were recently closed down. Maybe I’ll stay here for awhile and see what’s going on. I’ve got a tent in the trunk.

Day 2:

Here I am, lying awake on my cot.

Ouch!

What is that?

That ache in my wrist that woke me up.

Surely it’s not…

I get up quickly and look for my checklist, the one I made after talking with the oncologist at  my last check-up. There it is, tucked away in my special Cancer Survivor backpack, the one I assembled after the end of radiation. I carry it around with my water bottle and dietary supplements. It’s got a special pocket for Good Humor.

Let’s see – what did the oncologist say?

Cancer doesn’t attack the joints, or recur below the elbows or knees. (“Everything else is fair game,” he said.)

Oh, so I guess that pain in my wrist is simply, what, arthritis? Or – no – maybe it’s degenerative joint disease, one of the side effects of chemo the naturopath told me about.

Or, maybe I just slept in the wrong position.

But just for security, let’s continue down the list.

The doc said that, if it spreads, breast cancer usually heads for the brain, lungs, bones, or liver.

So, let’s see:

No headache. Guess my brain’s OK (relatively speaking). Check.

Lungs? No cough or shortness of breath. Check.

Bones? No pain. Except for that wrist. But that’s a joint AND below the elbow. Double check.

And I’m hungry.

That’s a good sign. A good appetite and steady weight indicate a healthy liver.

But just to be sure, I’ll check my weight on the bathroom scale. I just happen to have one of those in my backpack too. (Mary Poppins would be so proud.)

Two pounds heavier.

What?!!!

I never gain weight (well, except for those pregnancies and that one summer at Girl Scout camp).

Uh-oh. Weight gain. Isn’t that one of the signs of ovarian cancer?? Sometimes breast and ovarian cancer are linked.

Rats — No trapdoor I can open into my body for a look inside.

OK, quick – pull on my shorts. If the waistband’s too loose, it could be weight loss from liver metastasis. But if it’s too tight — abdominal swelling can mean cancerous ovaries.

But these fit just right.

Oh.

Must have been that Halloween candy my son gave me from his trick-or-treat bag, and all that extra sitting writing blog entries like this one.

I dig again through my backpack, looking for what, I’m not sure. And I see it in writing – a folder with a label that reads “cancer.”

Oh wait. No. That says “career.”

Silly.

Last week I saw something written on my to-do list and I thought it too said “cancer.” But it was only my note to myself to cancel the newspaper. Yeah, I’d like to cancel cancer too.

I glance down and notice that small mole on my right calf. It disappeared during chemotherapy, but now it’s back.

Oh right, that’s below the knee, and therefore off limits.

Unless, of course, it’s . . . skin cancer.

I remind myself, as the oncologist said, that if today’s pain is new AND above the knees and elbows AND progressive, I should start the countdown. If the pain is still around after 2 weeks, I’m supposed to call him. I am amazed at how many pains can come and go from a body in the course of 2 weeks.

A few months ago, it was the lymph node under my jaw that was tender off and on for a month. Pressing on it (of course I did!) irritated my ear and sinus and I had some tingling along my nose and lips. I was sure this meant a brain tumor that was affecting my facial nerve. But then the air dried out and the molds disappeared and the node retreated into obscurity.

And that tender spot in my abdomen last fall turned out to be just a bladder infection.

If nothing else, all these false alarms are a test of how well I know my own anatomy. In the misguided process of trying to diagnose myself, I’ve discovered just where my liver and pancreas are and what they do. And now that I’m in menopause — not through the natural gradual descent but from a shove over the cliff by that villain chemotherapy – I wonder just where are those ovaries anyway? Everything in my body seems to have shifted. The joints work differently. Even my teeth don’t come together quite like they used to.

A yoga teacher once told me that, if we are spiritually healthy and mature, we grow in awareness. I don’t think this is the kind of awareness she meant.

I resent the way cancer has hijacked my thinking.

Hypochondria: It’s just another word for obsession.

“Presque tous les hommes meurent de leurs remèdes, et non pas de leurs maladies.”

Nearly all men die of their remedies, and not of their illnesses.

Molière: The Imaginary Invalid (1673), Act III, sc. iii

A Camp Fitch Tent Group

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Anything But Pink

At this time a year ago, I was fuming about pink. Pink wrappers on my food, pink teddy bears in gift shops, pink ribbons stamped on my eggs.

Dwight D. Eisenhower photo portrait.

Image via Wikipedia

October is my favorite month and, though I’m ecstatic to be a survivor of breast cancer, I am not at all pleased to see the gorgeous reds and yellows of fall co-opted by the industrial-strength commercialism that now passes for breast cancer awareness.

And so, to put things back in perspective, I present here just a sample of the many other special days and causes that are honored in October.  (Many thanks to my sister for this information, which comes from Apples4theTeacher.com.)

Our excursion through the month of October begins on the 2nd, which is the day set aside to honor farm animals, guardian angels, and custodial workers (who might very well be guardian angels for us and the animals).

Next up is the 4th, which is, well, 10-4 day. (Ha!) Do you know where your CB radio is?

The 5th brings us World Teachers’ Day and Do Something Nice Day.  I say we combine these and just make it Do Something Nice for a Teacher Day (which ought to include giving them a raise).

Mad Hatters and German-Americans have their day on the 6th.  We could perhaps combine these two groups too, but that might be asking too much of the Germans.

The 8th brings us American Touch Tag Day, and I can’t think of any better way to celebrate what is also National Children’s Day.

The second week of October has two days we can all relate to: the International Moment of Frustration Scream Day on the 12th and National Grouch Day on the 15th. Two days later, though, we refocus our attention globally and recognize the International Day for the Eradication of Poverty.  Too bad we can’t eradicate that problem on that single day.

The 18th is set aside to honor (if you can call it that) National Menopause Day, but whoever designated that day had the foresight to also make it National Chocolate Cupcake Day.

On the 19th, you can Evaluate Your Life, and then follow it up on the 20th with Information Overload Day. (I’m doing my part here, in advance, to ensure you’re sufficiently overloaded come the big day.)

Be aware of reptiles and count your buttons on the 21st. And give the moles their day on the 23rd. (Your cranky co-workers get theirs on the 27th.)

Statue of St Jude on the West Front of Salisbu...

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I’m glad to see that my birthday, the 28th, is National Chocolates Day and also St. Jude’s Day.  My mother named me after St. Jude (sort of), her favorite saint, but I am by no means a hopeless case. I prefer to reflect his characteristic of perseverance.

Those of you with psoriasis can celebrate on the 29th. And anyone unable to wait for Halloween will happily recognize Candy Corn Day on the 30th.  Why not on the 31st?  Because Halloween is reserved not just for spooks but caramel apples, and magic, as well.

I noticed that a number of Presidents were born in October:  Jimmy Carter on the 1st, Rutherford B. Hayes, a fellow Ohioan, on the 4th, Chester Arthur on the 5th,  Dwight Eisenhower on the 14th, Teddy Roosevelt on the 27th, and John Adams on the 30th. I do wonder what Roosevelt would think of those pink teddy bears.  He doesn’t seem the kind of guy who would have ever worn pink. If you really want to go all out for these guys, you can download the coloring pages for each of them at Apples4theTeacher.com.

Eleanor Roosevelt: political activist, First L...

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A couple of First Ladies also celebrate birthdays this month — Eleanor Roosevelt on the 11th (which is also National Coming Out Day), and Hillary Clinton on the 26th (also known as Mule Day). Why the odd combinations on these days? One can only speculate.

Because some causes deserve more than just a day, we have a few special weeks in October.  National Carry a Tune Week and Nuclear Medicine Week share the 2nd through the 8th. Customer Service Week comes a tad later, from the 3rd through the 7th. (I think EVERY week should be dedicated to customer service. We seem to have forgotten what that is.)

The 16th through the 22nd is an especially busy week:  Kids Care, Teens Read, Chemistry, the YWCA’s Week Without Violence, Food Bank Week, Forest Products, Lead Poisoning Prevention, Freedom from Bullies, Freedom of Speech, and recognition of Medical Assistants. The last week of the month brings us World Hearing Aid Awareness and Give Wildlife a Break.

The really big causes, of course, get to claim the whole month. These include apples (how appropriate), bats (not sure if that’s the wooden or furry type), class reunions, and domestic violence. Emotional intelligence, which leads to emotional wellness (well, DUH!), fair trade, financial planning, and AIDS awareness. It’s the Month of Free Thought (something else we could stand to do all year round), books, caramels, chili, chiropractors, dental hygienists, Down syndrome, and ergonomics.

There’s something called “Gain the Inside Advantage” this month, though I have no clue what that means, and we are all to Go on a Field Trip (all month long?  I like it!). Kitchens and baths get the whole month, as do popcorn popping (oops, that poppin’), roller skating and raptors.  And if that’s not enough, we are to honor photographers and right-brained people, and hold conversations about prescriptions.

Two activities I can really enjoy this whole month are Sarcastic Awareness and Self-promotion (does that include the shameless type?).

And if you didn’t get enough of the hot flashes on the 18th, you can indulge yourself every day, no matter where you are, because it’s World Menopause month.

All sarcasm aside…

The list is a reminder that life is full of strange and wonderful things.

Autumn leaves

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Resurrection Stories

This being the Easter season, it seems appropriate to focus on stories of resurrection.  Not just my own, with respect to finishing the cancer treatment and moving on to whatever awaits me, but for others as well.

Phil Mickelson is the first one to come to mind.  Pro golf fans know his name well and know that he won the green jacket at the Master’s tournament today, even though he‘s not always a consistent player. I grew teary-eyed during the final hole, watching him play and seeing that pink ribbon stitched on the side of his cap in honor of his wife Amy and his mother, who are both being treated for breast cancer. As I’ve mentioned before, I’m not a fan of that ubiquitous ribbon, but this was one time I was glad to see it on display.  Here’s a guy who deserved to win, to have his hard work acknowledged and his career resurrected.  (As for Tiger, well, I don’t believe he’s been either resurrected OR reformed.)

Today’s local newspaper headlined the story of a man in a nearby town who is working hard to resurrect his own son. David Beshears was seriously injured by a roadside bomb while serving in Afghanistan 2 years ago. David’s father, who is also named David, has self-published a book about his son’s treatment and recuperation and still works with his son daily to help him recover. Though he himself has spine problems, Mr. Beshears’ goal is to climb Mt. Rainier every year, beginning this summer, until the day his son is able to climb with him. It’s a remarkable story. If you’re interested, you can read about it here:
http://www.theolympian.com/2010/04/11/1202319/after-ied-father-and-son-have.html

Also in today’s paper is the story of a young woman who has experienced her own resurrection after a canoe accident 10 years ago. Carly Boohm was a high school junior practicing for a river relay race when her canoe capsized in a strong current and she was submerged under water for 45 minutes. In the course of her recovery, her heart failed three times. She eventually went on to graduate from high school and talks about her life since then in this story:
http://www.theolympian.com/2010/04/11/1202330/a-second-chance-at-life-10-years.html

My own resurrection is not nearly as dramatic as these. Overall, I feel well, but suffer that fear of recurrence that I‘m told is prevalent especially for the first year after diagnosis. The odd spots on my fingernails have almost grown out.  My left armpit is still numb and some discoloration from the radiation remains, but is gradually fading.  I have my hair back — and when I bought a beautiful scarf at the LA County Art Museum last week, it was for my neck, not my head! My energy and mood flag sometimes, and I feel a tremendous stiffness in muscles and bones, which the acupuncturist attributes to the heat and drying out of tissues caused by chemotherapy and radiation (as he explained it, a decrease in the “yin“, the feminine part of that yin-yang balance). But these things are minor compared to what could be.  A couple weeks ago, I attended my first yoga class in almost a year, one designed specifically for cancer survivors (another part of the integrative services offered by the oncology center I go to).  One of the women in the class was still recuperating from a double mastectomy 2 years ago that lead to lymphedema in one of her arms.  There but for the grace of God…

And so, to keep my balance, I continue to look for (and share with you) humor and inspiration (along with those regular bouts of righteous indignation). Here are a couple of websites I stumbled across recently. These are not about resurrection (if you want humor about that, read Lamb by Christopher Moore), but they do relate to Easter, at least the secular part involving those luridly colored marshmallow Peeps.

Here they are making their contributions to science: http://www.peepresearch.org/surgery.html

And here they prove that they do indeed know how to do research: http://www.millikin.edu/staley/about/peeps/Pages/default.aspx

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.

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.