The Latest Developments

A couple days ago, I went in for the next in my series of 3-month check-ups.  A few odd numbers still show up for the blood cells, but everything else looks OK.  It’s been 15 months since the end of chemotherapy, just over a year since my last dose of radiation.  So I “graduate” to check-ups every 6 months now, and return to the annual schedule for mammograms/MRI. (Frankly, I’d prefer to skip the mammogram, but the doc likes to see one.)

So why the switch to a new schedule? After all, cancer can come back any time it pleases.

The logic goes something like this:  If it’s a supremely aggressive breast cancer, it will very likely come back during the first year after treatment.  After that first year, the chance of recurrence drops a bit and, in the case of triple negative disease, the chance of recurrence drops precipitously after the third year.  But as is typical of the confusion in the media when it comes to health information, I also read somewhere that the peak of recurrence for triple negative tumors is in the second and third years, so I don’t know what to believe.  This is one of those moments when I just turn myself over to the recommendations of the folks who know more than I do.  If the doc says don’t come back for 6 months, I’m not going to argue.

Listed below are bits of news I’ve collected about recent developments related to cancer and cancer patients in general:

  • Lest we think too much of our American advances in medicine, to the exclusion of developments in other places, here is an article describing the use of something called the Mobetron, a type of linear accelerator, in Japan.  This unit is used for intraoperative electron-beam radiation therapy (radiation delivered *during* surgery) and has been employed for patients with pancreatic cancer since 2006 and breast cancer since 2007. Its use in Japan was inspired by results from studies in Italy. This approach makes it possible to apply a single dose of radiation directly to the cancer site during surgery, allowing the patient to avoid the 6 weeks of standard postoperative treatment. Besides the obvious advantage of shortening treatment, such an approach means the surgeon can directly see the field to be radiated and there is less damage to surrounding tissues. This technique has crossed the ocean but is not widely available yet in the U.S.  If you’re interested, you can see the unit in operation (and the shameless plug for the hospital it’s at) in this video.
  • A couple of other recent studies serve well to dispel some of what are in fact myths of cancer treatment.  The first group of researchers found that depression is no more prevalent in cancer patients than in the general population of primary care patients.  The second set of investigators discovered that it may not be necessary to remove a large number of lymph nodes to assess the spread of breast cancer  – a procedure called lymphectomy that can sometimes lead to problems with lymphedema, a painful swelling of the arm.  They found that women who have only a few nodes removed for analysis have 5-year survival rates almost identical to those who have more nodes removed. I rather wish this study had come out a little sooner, but it might not have changed the picture for me after all. Extensive removal of nodes may still be necessary for those who have Stage 3 cancer. The piece of this puzzle yet to be explained is how a doctor then determines the stage of disease, since the number of lymph nodes involved is often what distinguishes, say, Stage 2 from Stage 3.  I’m sure there’s more news to come on this front.
  • A friend sent me a notice about ways to prevent thyroid cancer, the rates of which have been steadily increasing over the years, particularly in women. Some researchers suspect that this increase could be a consequence of the increased use of dental x-rays and mammograms.  Few of us know that the apron the dentist puts on you for x-rays has a flap that goes up around your neck to protect the thyroid.  There is also something called a “thyroid guard” for use during mammograms, but most technicians don’t use them unless you ask.  You can find more information about these methods of protection at one of my favorite websites, the one that investigates Internet myths and legends – Snopes.com.
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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.

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

The Zap Count

Dreary day. No mountain, and only one hummingbird (Robin Hood) visiting today. My son is home with a cold — one of those that creates a drippy nose and low fever but doesn’t warrant staying in bed.  So I put him to work helping me with laundry and editing a brain surgery article.  The boy doesn’t know what a brainstem cavernoma is, but he’s got a sharp eye for grammatical errors and incorrect punctuation.

The Popsicle Report:  I can’t believe it.  I had to go to the infusion center last week for my monthly port flush (an unfortunate choice of terms, but I’m not responsible for that).  First one since finishing chemo on New Year’s Eve. The flush consists of hopping in the assigned Barcalounger and going through the motions as if I were getting chemotherapy — except without the nasty drug part.  The nurse pokes the needle into the port and essentially backwashes it with saline and heparin.  The flush takes only a few minutes, and it was during those few minutes that I reminded myself to grab a Popsicle on my way out.  After all, I was legitimately in the right part of the building to snatch one.  I sat there feeling like a high schooler going back to visit elementary school.  The rooms looked familiar in a vague sort of way. (Oh yes, I recall. This window had the stained glass hummingbird on it!)

Afterward, walking across the parking lot to my car, it hit me:  I FORGOT the Popsicle!!!!
I could have, no, SHOULD have gone back  for it, but wouldn’t you know, I had to be somewhere else on time. Grrrrrr……

This week, I’m introducing The Zap Count, a countdown of the days of radiation treatment. Today‘s count:  8 down, 25 to go.

The daily visits to Radiant Care (a name that seems to describe some new type of heating system) are routine now. Drop my son at the bus stop, drive across town to the oncology center, get zapped, drive home.  I’ve got the undressing part streamlined — same room, same locker, shoes at the bottom, hat on the hook — and the technicians continue their assembly line process.  Lights out, the technicians peer at my naked chest as thought it were a map of the moon. The linac moves and buzzes, rotates around, buzzes again.  Off the table and back through the Fish room to get dressed. Films taken on Monday, see the doc on Thursday. Though I see few other patients as I come and go, the technicians tell me they treat about 30 people per day on each of the two machines.  Sixty patients a day, 5 days a week, roughly 50 weeks all works out to 15,000 people per year, give or take.  That’s roughly the population of my hometown.  In 2006, The International Journal of Radiation Oncology counted 2,246 radiation therapy centers in the U.S.  If all of them are as busy as the one I go to, well… with a calculator, you can do the math. And realize that only about half of cancer patients go through radiotherapy.

Those numbers are one of the catalysts for a series of articles in the New York Times a couple weeks ago about the dangers of radiation therapy (link: http://www.nytimes.com/2010/01/24/health/24radiation.html).  The writers describe the horrible details of several patients who were seriously injured because of errors in their treatment, and discuss the lack of regulation of the equipment and personnel involved in delivering the radiation.  One man died after gross over-radiation of his neck during treatment for tongue cancer that he believed developed as a result of his work helping people around the World Trade Center right after it came crashing down. This particular article intends to induce fear.  Whether that fear is justified isn’t quite clear though because the writers fail to follow those journalistic principles of being “fair and balanced.”  Though the articles document numerous errors (fortunately not all as dire as the ones that caused the man’s death), it doesn’t document just how many people are treated with radiation to put those errors in context.

Still, it prompted me to ask Dr. W some questions when she called me today.  She had seen the articles and assured me that Radiant Care has well-trained personnel that does regular checks on equipment, and everything is double- or triple-checked precisely to prevent errors. That’s the reason for the films taken every Monday — to ensure that the patient is in the same position for every treatment and the plan is enacted meticulously.  In my case, that means they watch very closely to ensure that the linac avoids zapping my heart. I was as relieved by Dr. W’s comments concerning the articles as I was for the real reason she called — to report the findings of the biopsy I had last week.

In a previous update, I mentioned that the docs sent me for a mammogram of the left breast and an MRI of both as follow-up to last summer‘s surgery and to lay the groundwork for radiation. For a few days, because of what appeared on the MRI, I feared I was once again in the maw of the beast. A tiny area in the right breast “lit up” (as the professionals say) on the MRI. Barely a month since I finished chemo– how could it be? And so I made a third and fourth trip to the radiology center for a mammogram, then an ultrasound, and then a biopsy of the 4 millimeter spot.  The radiologists didn’t think the spot was cancer but thought it best to check it out thoroughly “given my history” (as the professionals also say).  It turned out to be a harmless cyst, new since last summer and likely the result of fibrocystic changes related to hormone changes (despite the chemically induced menopause) and it collapsed as soon as the biopsy needle went in.

Once again, I deeply resent the fear this disease incites, but I learned much about how radiologists differentiate between harmless and harmful lesions on breast images.  Malicious things light up on MRIs.  On ultrasound images, they have tentacles (“like a starfish,” the technician said) and cast a shadow below them. And cancer doesn’t collapse when you poke it. Your average harmless cyst is nice and round, wider than it is tall, and doesn’t cast a shadow.  I know this because I asked to see the images, in the same way I asked the technician to see the images of the mammogram (which showed nothing!!!!), and I watched the ultrasound image as the doc did the biopsy.  My internist was the one who put me on to this tack last summer by saying “every patient has the right to ask” — to see the images, the records, or whatever it is you need to get answers.  And so, I asked.

And this is what I know: Women fuss about them. Men fawn over them. But except for feeding babies, breasts are highly over-rated.

So now I’m back to just my everyday level of fear (perhaps it’s time to develop a color-coded chart to echo that created by Homeland Security) and I’m determined to push through the radiation, even though it’s a daily reminder that I’m a member of a club I don’t want to be in.  I’m keeping in mind the key word a woman gave me after church last week.  Yes, another one who spotted the telltale headscarf and approached.  She had been watching for me, and flagged me over as we were walking out after the service. She was worried because she hadn’t seen me for a couple of weeks and I explained that we had been out of town and I missed one service because of a cold. Since I didn’t know her, I wondered why she was watching for me. She explained that she’d had breast cancer 7 years ago and understood what the scarf meant. The word she gave me, even forced on me when I said I have breast cancer, is had.  Not have cancer, but had cancer. And she’s right.  Those three letters trigger a vastly different way of thinking.

And  now, for some vastly different identities to go along with that new vocabulary, take a look at these photos:

Incognito

Sr. Mary Audacious

Parrothead.

I’m looking for my last shaker of salt.

This is Science Fiction

Three down, thirty to go.  The territory has been mapped, the standing appointments set, radiation treatments have begun.  I counted the days down on the calendar.  Monday, March 8 should be the last blast.  Between now and then, all I have to do is keep marching through the days.  No blood counts to worry about and so no delays to change the plan (we hope). Only 8 pages of handouts to read, compared to the 2-inch, 3-ring binder of printed matter they gave me before chemo began. And if I’m clever, I can still sneak across the building into the infusion center for a popsicle.

If I’m going to continue with the idea of omens, I’ll take the first day as a good one.  The sky was blue, the sun shone, and it was in the 50s. The appointment took about an hour and a half — longer than subsequent ones will be — because that was the day the doctors’ theoretical plans were put into action for the first time. Most of the session was consumed by the technicians moving equipment, marking territory, and taking measurements before the first zap.

The plan is for a total dose of 5040 units (measured as cGy rather than the old term “rads“), broken up into 28 doses of 180 units, followed by 5 higher doses for a “boost” at the site where the tumor was removed, the most likely site for a recurrence.  The goal is the same as for chemo — kill any remaining cancer cells.

The handouts describe the principles and goals of radiation and the side effects, the most prominent one being skin irritation ranging from redness and dryness to itching, peeling and (hopefully not for me) blisters.  The doc says these can be treated with applications of aloe vera or other gentle lotions, including emu oil.  (I could actually get some emu oil locally.  One of the vendors at our farmers’ market sells the stuff.) The skin effects don’t correlate with those from sun exposure, so the fact that I turn the color of a lobster in the sun has no bearing on the effects I may have from radiation.

The other major effect is fatigue, which is cumulative and, as with the skin changes, shows up a few weeks after the treatment begins, dissipating slowly after it ends.  I will lose hair, but only in the treated area.  And since radiation tends to shrink tissues, my stretching and exercises become more important.

So  here’s my new routine (or, if you prefer, the “picnic” or “piece of cake” others have called it) .  I drive to the same building, but instead of going to the check-in clerk on the right, I go to the one on the left.  Then it’s a short walk round the corner to the dressing area.  I strip from the waist up, don one of those flimsy gowns, sequester my clothes in the narrow gray locker, turn the key, and slip the elastic coil that serves as a key ring around my wrist.  Then it’s off to the Fish room — the waiting area for patients only, which is dominated by a large, crystal clear aquarium in the center  with its blue and purple tangs and a variety of other colorful fish and coral.  I don’t have  time to check out the magazines scattered on the tables because my technician is right on schedule and moving me back to the inner sanctum — the darkened rooms where the computers are arrayed in a pod in the control room, and then through the massive, thick door (note the purple and yellow danger sign!) into the octagonal, darkened room that houses the linear accelerator (sometimes called the linac), the machine that sends the deadly beam to its assigned target.

Sitting in the middle of the room, the accelerator looks harmless enough.  A huge cream-colored tower with a broad arm extending outward and down to support a thick metal disc. Nearby is a flat table, which in my case has been set up with the foam back support the technicians made for me at the assessment appointment, with the arm supports already angled up to keep my arms out of the way.  There is a stack of similar blue back supports leaning against the back wall, each one bearing the name of its corresponding patient.  To the right are tall shelves, on which sit rigid white mesh “heads” — the supports used to keep patients still while they undergo head or neck radiation. This is not the warm, familiar atmosphere of the infusion center with its beeping pumps and bustling nurses.  There is no clutter here, no cushions or lap robes, no baskets of snacks or puzzle tables. This is science fiction.

The linear accelerator has actually been around since the 1930s.  There are different types, used for different purposes. At this link, you can see the linear accelerator at Stanford, where the first unit was put to use. Don’t read the article (unless it fascinates you). Just scroll down and look at the historical photos on the right. The one with the child is either amusing or a bit disturbing, depending on your perspective.

http://images.google.com/imgres?imgurl=http://news.stanford.edu/news/2007/april18/gifs/accelerator3.jpg&imgrefurl=http://news.stanford.edu/news/2007/april18/med-accelerator-041807.html&usg=__UcBEQcGoGpJ9Sh_ORgwz_rMkDpY=&h=365&w=600&sz=42&hl=en&start=8&um=1&tbnid=EtsnXCNgsW2miM:&tbnh=82&tbnw=135&prev=/images%3Fq%3Dlinear%2Baccelerator%26hl%3Den%26client%3Dfirefox-a%26rls%3Dorg.mozilla:en-US:official%26sa%3DN%26um%3D1

To get me ready for the session, the technicians (3, all young women) help me onto the table and into position.  I notice the music playing — greatest hits of the 60s and 70s. Not quite as good as the iPod, but there is no place or time for an iPod, or writing or reading for that matter, on this side of the building.

On the first day, the technicians spent a lot of time moving the table around, moving the arm of the accelerator, working from the plan drawn up by the docs to get the positioning just right.  They take measurements, calling out numbers to each other, and marking out the field to be treated on my chest, this time with a purple marker (“It‘s washable!” the technician says reassuringly).  I was reminded of watching a neurosurgeon in the operating room at the hospital where I worked in Chicago. He too used a purple marker to draw the incision line on the shaved skull of a patient  At the time, I was amused. He looked so much like a kid drawing with a huge crayon.

One technician tells me to turn my head slightly to the right so they have a clear line to the supraclavicular nodes, the ones above the collarbone, the first area to be treated.  Then they mark out the second area, the left side of the chest, to include the internal mammary lymph nodes arrayed along the sternum, and I feel the cold marker tip move down my sternum and over to the left side.  They continue to take measurements and call out positions to the technician in the control booth, positioning the disc of the accelerator directly over me.

In the disc I can see a small window and the reflection of my torso.  Over it is superimposed thin green lines of  light running the length of my body and some narrow red beams.  The field they’ve traced on my chest veers a bit along the sternum, to ensure that the heart is shielded from the radiation.  Luckily, my anatomy is such that this is possible.  Beyond the short-term effects of skin changes and fatigue, the long-term effects can include heart disease  (later on in “young people” like me, Dr. W said) if the patient’s anatomy puts the heart in the range of the beam.  And of course, as with the chemotherapy, anything they do with radiation can cause cancer.  More hair of the dog.

The technicians leave the room during the actual treatment.  Unlike the dentist’s office, there is no lead apron placed anywhere on me.  This kind of radiation doesn’t scatter the way other types do.  The disc of the accelerator hovers above me to treat the lymph nodes at the collarbone, then rotates over and behind my left shoulder to zap the nodes from behind.  On the second round, the disc moves slightly to the right of my chest, angling its beams across my breast to the left.  Then it rotates across my torso and down to the left to angle more beams up and across to the right.  Later, during the boost phase, the disc will send particles directly down into the scar.

During the session, I feel nothing except my right hand going to sleep, and hear only the robotic movements of the machine, like the hydraulic noises you hear on an airplane when the wing flaps move.  During the actual treatment, the machine buzzes loudly, like a very large and unhappy wasp.

As I watched the lines of red light reflected on the wall during the session, I thought of another brain surgery I observed back in Chicago.  The patient had an aggressive tumor and the surgeon was experimenting with something called photodynamic therapy, in which light-sensitive radioactive dye was injected into the patient and a laser was then used to activate the material after it had collected in the tumor, with the hope of killing the cells.  Those of us in the operating room had to wear goggles to protect our eyes from the laser light.  But of course I had to lower those goggles for just a moment.  The lines of red light I saw during my session reminded me distinctly of that gorgeous arc of red light I saw reaching into the patient’s brain.

As I left the treatment room after the first session, I thought, “What, no mushroom clouds?”

Last week, Dr. W was doing her week of service in a neighboring town. The radiation oncologists alternate their service between three sites — here in Olympia and in two nearby towns — spending a week in each location.  So instead of seeing her, I talked with Dr. H, a tall, thin man with a meticulously groomed beard, gray hair, glasses, and a fashionable suit.  When I asked him whether the treatment field included my heart, he pulled up the computer images and traced out the pattern to show that the treatment field skirted just beyond the heart’s edge.  He also showed me the piece of lung that could not be avoided, introducing a risk of inflammation in tissue already affected by chemotherapy and changes that will be apparent on any future chest X-rays.  Since radiation galvanizes tissue, so to speak, the ribs in the field of treatment will also undergo changes, increasing their risk of fracture, but only in cases of major impact — car accidents and such. I’ll be sure to avoid those.

Here’s an article that includes samples of computer planning images.  They’re awful pretty to look at if you don’t think about the implications:

http://images.google.com/imgres?imgurl=http://www.insidestory.iop.org/images/linear_accelerator.jpg&imgrefurl=http://www.insidestory.iop.org/radio.html&usg=__94XRXz19phtJMELIHaAYTEGgOLw=&h=240&w=320&sz=16&hl=en&start=6&um=1&tbnid=mk9JeItYhEXdKM:&tbnh=89&tbnw=118&prev=/images%3Fq%3Dlinear%2Baccelerator%26hl%3Den%26client%3Dfirefox-a%26rls%3Dorg.mozilla:en-US:official%26sa%3DN%26um%3D1

Dr. H also explained the choice of dose  and the reason for the boost at the end of the series.  Since scar tissue is denser than regular tissue, it takes a higher intensity to get the same effect. He also said that, given my general good health (if you don’t count the cancer!) and energy level, I should do well in treatment.  Ah, if only they could give written guarantees.  When I joked with him about not seeing the expected mushroom cloud, he replied “Radiation is your friend!”  Well, you know, I’ve made a few new friends along this path but radiation is not one I anticipated.

So now I need to make the mental shift — from thinking of going to the oncology center once a week for several hours to every day for about 20 minutes. I can’t put any lotion on the skin within 2 hours of treatment (aloe on twice a day but showered off before the session).  No tight clothing (who, me?), perfumes, anything that would irritate the skin.  And I see the doc once a week rather than every 2 weeks.

But, no needle pokes in the chest, no steroid crashes, and food once again tastes like it’s supposed to.

If you’re interested in the mechanics of the linear accelerator, you can see an explanation here: http://www.youtube.com/watch?v=lZ9cGVaxOes

And if you want to make one at home, you can find directions here: http://www.kqed.org/quest/television/make-it-at-home-tabletop-linear-accelerator

Remember — no mushroom clouds.  And radiation is your friend.