Seeing the Thestrals

Thestral

Thestral (Photo credit: Jon_Tucker)

In a conversation not long ago, a friend who has been reading this blog periodically observed that, this far out from my treatment for cancer, I “wouldn’t have so much to write about anymore.” The comment was intended to be reassuring, but it stuck with me in the way such comments do for people whose perspective has been changed by a life-threatening event.

I would love to be the first to affirm my friend’s observation. Would that it were true. But the impact of such an event never disappears, though it may fade a bit into the distance.  Cancer is too big a part of the overall picture of health care, not just in this country but around the world. There will always be more to be said because, once it invades your life, you can never be entirely free of its shadow.

And that shadow takes the shape of a thestral.

Fans of the Harry Potter books will quickly recall that, in the fifth book, Harry Potter and the Order of the Phoenix, Harry for the first time is able to see the thestrals, the invisible creatures that have been pulling the carriages from the train station at Hogsmeade up to Hogwarts castle when students arrive for the new school year. It takes awhile for him to find out why he can now see the thestrals, with their dark, skeletal, horse-like bodies and leathery wings. It’s his friend and teacher Hagrid who tells him that thestrals can be seen only by those who have seen death. Harry inadvertently earned the ability to see them by witnessing the death of a classmate at the hands of the evil Voldemort at the end of the fourth book. Once Harry sees the thestrals, he can’t pretend they don’t exist.

Things once seen cannot be unseen. We can only pretend not to see them.

Unlike Harry Potter, I haven’t quite “earned” the ability to see thestrals (were they to exist) because I have not yet witnessed death directly, only after it has occurred. But having had a serious go-round with cancer, I can see the faint, ghostly outlines of the creatures in the far-off distance at the edge of the woods.

To descend into symbolism (forgive my English major’s approach), we can talk about what the thestrals represent.  Are they death itself, or only reminders of it? In the book, the thestrals turn out to be helpful when they transport Harry and his friends to London in the misguided attempt to save Sirius, Harry’s godfather, from the hands of Voldemort. So they do not represent death, taking part as they do in an effort to prevent one. They are simply reminders that, after catching sight of our mortality, whether through serious illness or accident, we can expect to see the world differently — notice things that we did not notice before, and look at the world with new awareness.

This is the best explanation I’ve found for how the world looks to me now, several years after the encounter with cancer. The thestrals are dark, disturbing creatures, not ones we like to look at as we would, say, giraffes. But they serve to remind us that recognizing our mortality changes our view, and they can perhaps do for us what they do for Harry and his friends – move us to take actions that we might not have managed otherwise. They remind me, specifically, to keep my attention on what really matters:

  • The shower water in the hotel room isn’t as hot as I’d like?  So what.
  • My son wants a green streak painted in his hair?  No big deal.
  • Two friends disagree on what is the “correct” interpretation of Biblical scripture?  Not worth the argument.

The thestrals remind me to see only what really matters, and use that sight when I might actually be able to change things:

  • Make sure a friend’s voice is heard when the crowd isn’t listening? Indeed.
  • Call out a student who has been cheating her way through classes? You bet.
  • Write about my experience with a life-threatening illness, for those facing the same situation? Absolutely.

The thestrals are there for all of us. You don’t have to see them to know they exist. But if (when) you acknowledge their presence, you have to change the way you see the world.

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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.

Too Many Drugs and Mysteries

Started off in a low mood today. It’s grey November. I’ve grown tired of the intrusion of this illness into my life and that sense of just not feeling right.  Nothing wrong on a big scale, but not feeling right either.  The ongoing discomfort under the left arm and the time spent in physical therapy. The dry ticklish cough that comes on at odd times and then mysteriously disappears. The slight ache in my neck and shoulders that comes and goes as well. The continuing anemia that forces the body to slow the pace the mind sets. The oozing blood that clots my nose, and then stops.  As Paul Simon sang it in my ear during infusion:  “I don’t find this stuff amusing anymore.” (That was after Phil Collins, from his Genesis days, singing “I Can’t Dance” and Bette Midler crooning “Am I Blue.”)

And then there’s the burden of all the ancillary drugs to counteract the side effects of the Taxol. For the one cancer drug infusion, there are 4 “pre-emptive” drugs beforehand: Zofran to prevent nausea, Zantac for the tummy, Claritin to prevent allergic reactions, and of course the happy steroids, which I have come to both anticipate, for the lift they provide, and dread, for the later crash.  Then there are the 10 supplements and 2 drugs at home during the week, including Vit. D, fish oil, CoQ10 for energy and the heart, a probiotic supplement for digestion, the glutamine to prevent neuropathy (along with the ice-water finger soaks, it seems to be working), the Neupogen, and the Ativan at night.

When I counted it all out for the naturopath last week, commenting on the supplement-to-Taxol ratio, he grinned widely and said, “That’s the way I like it!”  They may be natural substances, but they can be prescribed just as quickly and heavily as synthetics from the Western practitioners.

This better all be temporary.

My white cell count is a robust 8.7 (normal range, 4-11), but it’s now time to keep an eye on those red cells.  The normal range is 3.8 to 5.2.  My total has been hovering just above 2 (2.25 this week, 2.17 last week).  The key subset  of this count is the hemoglobin, with a normal range of 11.6-18.5.  Today’s number is 8.4, eight being the threshold for a decision to bolster the red cells.  If the hemoglobin drops below 8, they usually recommend supplementing the cells. Used to be they’d use an injection called ProCrit, but a few recent reports have shown a possible connection to recurrence in patients with colon and breast cancer. The alternate method to bolster the cells is with a transfusion.  So I’m trying to race time a bit here.  With 5 more Taxol infusions to go, I’m hoping the red cells hold steady and I can avoid doing anything invasive to support them.  The naturopath has loaded on a few more supplements (Vit. B6, B12, folic acid, and protein powder, rounding out that total of 10) to try to stop the downfall. It might be working.  Last week’s hemoglobin count was 8.2.

BUT, I can still walk at a pace that my children have trouble keeping up with, so, as Tony Bennet and k.d. lang sang in my ear from my iPod:  “I ain’t down yet.” And even though I’m having to supplement my eyebrows with some pencil lines now, I still look (ha!)  MAHvellous. (Especially in my blue fuzzy hat, which gives my head the shape of a gumdrop.  My daughter likes to come pet my head when I wear it.  I can’t understand why dogs like to be pet on the head.)

OK, OK, I know you’re all looking for it.

The Popsicle Report: I needed comfort food today.  Blueberry-lemon.

The grand tree outside the infusion center window has surrendered its leaves, and shows only its blanket of moss on the grey bark against the grey sky.  As I waited for the blood counts to come back, I noticed the woman across from me, getting ready to have her chest port accessed for her blood draw.  She took the characteristic pose, hands pulling down her shirt to expose the spot on her chest where the port is implanted.  On me, the port protrudes like an odd rock embedded beneath the skin.  On people, uh, better endowed, like this woman, the patient has to point out for the nurse where the port is located. This woman’s posture brought to mind those church paintings of Christ pointing to his sacred heart that I remember from my childhood. (And the way this port sometimes irritates my chest wall makes me think it’s bound in thorns.)

Then I noticed the tall distinguished man poised over the table where the puzzles are, working the pieces into place. Next to him stood his personal IV machine, which he had wheeled over from his assigned Barcalounger in another pod.  Meanwhile, the nurse worked her way around my pod, bringing her tray of cocktails, those little plastic cups with the pre-emptive meds. I wished mine contained shots of vodka instead of the steroids and Claritin, but then I figured the vodka probably wouldn’t taste right. Not even chocolate tastes right now.

As I sat observing my surroundings, I twirled the end of my pen against my temple, rather like Dumbledore and Snape in the Harry Potter books, when they wanted to remove certain thoughts and memories from their brains to be set aside in the pensieve for later viewing.  Wouldn’t that be a great trick — removing the swirling thoughts that clutter up our brains, to be kept for later or thrown out altogether.  (If you’re a fan of puppets, Harry Potter, rhythmic chant, or just general silliness, take a look at one of the Potter Pal videos on YouTube: http://www.youtube.com/watch?v=Tx1XIm6q4r4.)

I turned up the volume on the iPod today to drown out the the snarls, moans and beeps of the numerous IV machines.  ‘Twas much more pleasant to listen to The Crusaders, some Brahms liebeslieder waltzes, the Doobie Brothers’ “Takin’ It to the Streets,” Norah Jones, David Byrne (Rei Momo, his Brazilian-inflected album), Angelique Kidjo (African folk singer) backed by Carlos Santana, Nina Simone’s “Four Women”, and — had to get there eventually — the Beatles’ “My Life.”  If you haven’t seen it yet, Chris Bliss does a MAHvelous juggling routine to a Beatles tune: http://www.youtube.com/watch?v=H8f8drk5Urw

In my continuing search for meaning in this whole experience, I’ve been wondering if there’s a difference between cure and healing.  We hear lots about walking, running, racing for “the cure.” Since there are about half a dozen different types of breast cancer, it seems foolish to think there’s only one cure. My docs says we’re aiming to cure my cancer, though I don’t know how you can really be sure you’re cured except in hindsight many years later.

Dictionaries pretty much equate the terms “cure” and “healing” but the self-help literature seems to distinguish the two, with cure referring specifically to the scientific, medical process, and healing to the psychological realm.  Several of the books I’ve encountered take up the mind-body connection and speak of healing as ridding yourself of the mental burdens that led to your illness. In other words, they imply that we are responsible for developing whatever ails us.  Bernie Siegel went so far as to define a “cancer personality” — someone likely to develop cancer because of their inward characteristics and history. Caroline Myss, a “medical intuitive” and healer who wrote the once-bestselling “Anatomy of the Spirit,” goes so far as to say that people develop cancer because of unresolved issues from their lives, and specifically that women develop breast cancer for lack of nurturing themselves. There are a surprising number of people who subscribe to these ways of thinking.  (I believe it’s called “blame the victim.”)

Like those lists of risk factors for breast cancer, these descriptions don’t fit me very well either.  I don’t have psychological baggage left from childhood (unless you count having to eat liver and onions), and have not suffered great traumatic experiences that have crippled me (yes, I am indeed lucky).  If you follow Myss’ logic and look at the numbers of women who develop breast cancer (that popular 1 in 8), it would seem that a whole lot of us women need to be doing a whole lot more to nurture ourselves, and in Asian countries, where women are expected to give up themselves for their families, the rates of breast cancer should be higher than here, when indeed they are lower.

As it turns out, Bernie Siegel later retracted his definition of the cancer personality, and Caroline Myss, who now bills herself a mystic, wrote another book in which she admits that, indeed, no matter what some people try, they don’t heal (and some actually choose not to), and things like genetics and environmental influences do play a role. Her current stance on the matter seems to be — pray.

Nothing terribly mystical about that.