Godspeed, Dr. Bailey

I have been remiss in writing this past month — so many things to do, so little time. Isn’t that the excuse for all of us.

The gifts have been opened, and Santa claimed his cookies.  My stomach was full after last night’s robust dinner — a seafood nabe “(nah-bay”), a one-pot dish of Japanese origin comprising any number of delicious ingredients cooked in a ceramic pot on the table.  The choir in church sang many of my favorite carols (“Rise Up Shepherd and Follow”). And there was my son, precisely at 7:30 this morning, as promised, awakening my husband and me to see what Santa brought.

It’s a joyous day for us as a family, but a sad one for me as I have just received word that a friend and mentor, a fellow traveler on the Cancer Road, has died. Though we were not what some might consider close, his life had a tremendous influence on mine. He was the one who took a chance on my work in the classroom, having pulled my resume out of the tall stack of those from  others applying for teaching at the college.

During my interview, I asked him why he chose me out of all the others clamoring for the position.  After all, my resume could be interpreted as that of a vagabond, with many jobs and many moves.  He replied instantly and enthusiastically, “Look at all that experience!”

After I began teaching, I would stop by Dr. Bailey’s office from time to time to chat and get his advice about how to negotiate problems in the classroom.  After I wrote my column for the local newspaper about helicopter parents, he gave me a copy of one of his favorite poems, This Be The Verse, by Philip Larkin. I have tucked that copy away in a folder of items for my children labeled “Real Life” —  articles, research and columns that I hope will help them through their later lives.

When I got the diagnosis of breast cancer in the summer of 2009, I called Les to talk with him about whether I could or should continue to teach. I didn’t know what to expect and didn’t think I should commit to classes that I might not be able to finish.  As an adjunct, I knew this request could mean the end of my teaching career.   By that time, Les had already been through the chemotherapy routine himself.  Without hesitation, he told me not to worry, to see how the chemotherapy went, and to let him know what I felt I could do.  Though I did stay out of the classroom for the year, Les arranged for me to continue to advise the student newspaper.  When I decided to write this blog, he chuckled at my having named it after popsicles.

Les’s spirit was indomitable.  Since last summer, he had been undergoing a second round of chemotherapy for recurrence, but was still teaching and active on campus. I saw him last a couple weeks ago, and there it still was, that shine in his eyes, that determined tone in his voice, eager to engage in conversation. So easy.  So strong.

His passing on is sad because the world is a lesser place without him.  My world is a lesser place without him.  But I remind myself, as I imagine he would have me do — though his story is not my story, his spirit can take up residence in mine.  I sit here typing, knowing that I can hide in my office in sadness, or I can get up and join the excited voices of my children and husband, playing a game in another room on this Christmas Day.

Follow, follow

Rise up shepherd and follow.

Follow the star to Bethlehem.

Rise up shepherd and follow.

The Year Passes, But the Path Continues

So here it is, a year after I was diagnosed with breast cancer and underwent surgery to remove it. The time seems better measured in peaks and valleys than in days and hours. Nevertheless, it’s fitting to turn back and face those days again, to see what meaning might be hiding there.

The lowest point of the year was most certainly that day in the surgeon’s office when I learned how many nodes were involved.

The highest point, fortunately, has been repeated again and again in the many connections and conversations with those who have “been there” — if not specifically with cancer, then with their own serious life circumstances. Their courage has inspired mine.

Early in this trek, a physical therapist told me that there would be gifts along the path of treatment.  (Fortunately, she didn’t say cancer is a gift. I might have punched her if she had.)  At the time, I imagined many brightly colored, be-ribboned boxes scattered alongside a path. Pink, yellow, blue, some with polka dots. In reality, those boxes have opened to reveal numerous gifts:

  • The support of many, many family members and friends, through their presence, conversations, thoughts, prayers, suggestions, care packages, feedback on my posts — and food! I can never offer enough thanks to all of you, especially to my husband and children, whose good energy helped smooth the way.
  • The compassion and assistance of the nurses, physicians and other staff at the various stages of treatment.  Every day, they help their patients bear up under unbearable circumstances.
  • The popsicles (of course!) and hummingbirds.

After an arduous journey, any traveler needs to look at events and try to grasp the lessons in them. For it would be a sad thing indeed to pass through a fire and not have learned. Here’s some of what I’ve realized:

  • I can go through a harrowing experience and come out scarred, but intact.
  • Such a harrowing experience is made bearable by the support of those more knowledgeable and experienced than I am.
  • Life becomes more immediate when the weight of a serious event settles upon you.
  • Even in darkness there is joy (and humor).

Except for those few scars, some residual numbness under the left arm, and a new hairstyle (oh, and that menopause stuff), I look and feel much the same as I did before the diagnosis (check the new picture on the photo page). And although it’s not about the hair, having it back means I can pass through society without external evidence of having had cancer, so I can — once again — be anonymous in a crowd. The struggle now becomes an internal one, toward acceptance and greater meaning.

And so comes the last question: Am I a better person for having passed through the fire?

I’m not sure I can answer that yet.

What I do now is face forward and walk on into this next year, just like any of you, without knowing what will come.  Another trek into the dark forest?  A permanent home in a sun-filled meadow? Whatever it turns out to be, I’ll tell you what I find along the way.

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.

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