Looking for My Balance Again

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

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

I’ll choose to consider that a compliment.

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

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

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

Does it work?

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

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

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

Guess which one I chose?

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

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

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

Stay tuned…..

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Between the Drugs and the X-rays

What a difference a week makes.  Hard to believe that, less than a week ago, a decorated Christmas tree stood in our house and paper snowflakes dangled from light fixtures.  All that is gone now, with the weight of the old year (and aren’t we glad?). With weekend temperatures in the 50s here, it seems like Spring has thrown aside the old year in her rush for center stage. I even heard a frog singing last night.

My sympathy to those of you suffering freezing temperatures and snow, but it’s not often we get to gloat about being warmer than Florida.

The hummingbirds continue to come and go (they may even talk of Michelangelo), and I’m getting a brief respite before the beginning of radiation next week. The effects of chemotherapy are slowly dissipating and my energy seems to be increasing.  No cell counts, no popsicle report, and still not much hair. (A few more inches of this gray fluff that’s coming in and my daughter says she’ll loan me her hair gel to spike it.) But I have found that green tea is the next best thing to dexamethasone.

Last week I checked in with the naturopath, who’s changed the plan now that chemotherapy is over and radiation is about to begin.  I get to quit the glutamine and the probiotic, and need to stop the CoQ10 during radiation, since it’s an antioxidant that might interfere with treatment.  That leaves only the fish oil and vitamins B and D.  He was happy to see that I’ve porked up to 103 pounds.  Must have been those gingerbread cookies my sister makes for Christmas.  And those cornflake wreaths…..

Though time is passing at its usual rate (more and more quickly the older I get), I’m surprised by how quickly the mind refocuses once an unpleasant (but necessary) series of events ends. For six months I trekked to the infusion center every week to spend several hours in a chair.  Twenty-four times in and out of the parking lot, in and out of the Barcalounger, jabbed by needles and given poison. The last infusion was less than 2 weeks ago, but it seems months already.  I realized the drastic shift in focus yesterday when I went in for a mammogram.  Walking into the radiology office jerked me back into hard reality.  It was early June when my visits there began the treadmill I’m on.

The mammogram served two purposes — the 6-month follow-up after surgery, and to document the new baseline image that the radiation oncologist needs to lay her plan.  Once again, I stood by the technician as she pulled up the images on her screen — beautiful rounded shapes of wispy white on a dark background.  Hard to imagine there could be anything lethal hiding in there. She compared them with the images from last summer, with the dark spot and cluster of calcifications that signaled trouble.

I spoke with the radiologist who reviewed the images.  He assures me everything looks OK now.  But you know I can’t trust that conclusion.  We talked about the recent controversy regarding mammograms, and he readily admitted that mammograms are a poor tool, but as we all know, “it’s the best we’ve got.”  And there’s nothing else in the works to replace it.  Just to be safe, he recommends following through on the order written after surgery for a follow-up MRI, so I’m waiting to hear back from the radiation oncologist about getting that scheduled.

I did finally stumble across an article that takes down many of the myths about breast cancer, one of which is the role of mammograms. It showed up in good ol’ middle-of-the-road Prevention magazine: http://www.prevention.com/breastcancermyths/index.shtml

If you look past the provocative lead photo, there’s actually solid information here. The article ends with a link to the Army of Women, a group established by Dr. Susan Love, whom I’ve mentioned before. The link takes you to the Army’s site, where you can sign up to be notified of clinical trials to participate in. You don’t have to have cancer to sign up.  They’re doing research on women without the disease to try to find what causes breast cancer. One of the difficulties of doing research for any disease is getting people to enroll in trials.

Speaking of other diseases, while at the grocery store checkout over the weekend, I noticed a plastic donation box on the counter.  Small, undistinguished, a clear box with a blue label indicating that it was for lung cancer. How very different it was from all the signs, labels, and products we see that are linked to breast cancer, with their bright pink labels and bold lettering. Breast cancer gets a whole month of attention in October.

But according to the Mayo Clinic, “Lung cancer is the leading cause of cancer deaths in the United States, among both men and women. Lung cancer claims more lives each year than colon, prostate, ovarian, lymph and breast cancers combined.” The CDC gives these numbers: “In 2005, 90,139 men and 69,078 women in the United States died of lung cancer.”  Do the math and you arrive at this total: 159,217 people dying of lung cancer in one year. Breast cancer claims about 40,000 lives a year. With those numbers, lung cancer deserves more than a lonely plastic box at a grocery checkout.

Here are a few more tricks with identity:

The closest I’ll ever get to being a geisha.

A friend in Japan brought these kimonos for my daughter and me in the summer of 2008.  Technically, these are yukata, the lightweight kimonos intended for summer wear.
My own version of 1920s motoring garb, taken before my hair came out.

Frog is my co-pilot.

The pink warrior. All I need is a little war paint.

If you’ve done a race or walk for the cure, you might recognize that scarf as the current signature of the Susan Komen Foundation (in partnership with the Ford Motor Company).  My sister and nieces did such a race on my behalf last summer and passsed on the scarf to me.
The closest I’ll ever get to being Jessica Simpson.

The hat, loaned to me by my mother, bears Jessica’s designer label.  I’m waiting for the paparazzi to arrive.

Many thanks to my photographers, my children, for indulging me in my experiments in identity.

A Fanfare for the New Year

Happy New Year.

I’m sitting here after lunch on Sunday, before the weekly onslaught of responsibilities and routines begins again tomorrow.  Robin Hood and Flip Flop have come by to dine, and writing seems more appealing than laundry or taking down Christmas decorations. (OK, so now you know I procrastinate too.)

So yes, I spent most of New Year’s Eve day at the oncology center. The first appointment was with the radiation oncologist at 8 a.m. I’d seen her initially last summer, but this was the re-evaluation and imaging to lay the plan. Lots of new information to digest but I’ll save that for another post. The appointment was scheduled for 2 and a half hours but finished earlier, so I had time to drive over to Shari’s for breakfast before the infusion.  I don’t know who Shari is, but she must be related to Denny, who has equally unhealthful breakfast items on the menu. Potato cakes smothered in sour cream and apples, with a side of scrambled fake eggs.

Don’t tell the naturopath.

This week the white cells were 4.1, good enough to get me off the Neupogen even if they dip this week. For good measure and because the count was slightly low last week, I took one shot before traveling, even though Dr. L said it wasn’t necessary. I wore one of those silly paper masks on the plane and seem to have come through the travels just fine, if you don’t count jet lag. The hemoglobin continues to climb — 10.9, less than a point shy of normal. My stamina is slowly increasing, and I’ve tried to be diligent about doing the exercises, even attempting a few yoga sun salutations, before radiation changes the picture again.

So for now, I’ll borrow some lyrics from Bob Marley: “Give thanks and praise to the Lord, and I will feel all right.”

The Popsicle Report:  Of course I went for the blueberry-lemon. Not the last time, though. I have to return to the infusion center once a month to have the port flushed, so I should still be able to nab one then. I’ve had the the last of the steroids though.  It’ll be up to y’all to decide what effect they’ve had on my writing.

For the infusion this time it’s the same pod, even the same chair, and so the same view, including the crystal bee and the steel-gray cloudy sky. Down the row I see the same stocky man with his 1920s motoring cap. Across from me is a woman with a black knit cap doing crossword puzzles with her husband beside her. When I mention to her that it’s my last infusion — I hope forever — she rolls her eyes sadly and responds, “Yeah, that’s what I thought the first time too, but it didn’t work out that way.”

Next to me lies a thin, frail man, napping in the chair and covered with a blanket.  The tube in his nose whistles periodically as it delivers oxygen. At the end of his session, his wife and granddaughter bring in a wheelchair to take him home. They move with great gentleness around him, pausing during his shift to the wheelchair when it’s clear the movement causes him pain. One of the nurses comes to help.  I have the sense, as they wheel him away, that he may not be back many more times.

Georgia, one of the gregarious infusion nurses, comes to say goodbye to me before she goes to lunch. She comments on my headgear — a royal blue cloth with a lighter blue flower and vine motif — and says it looks just like some cloth she bought in Hawaii. “That’s because that’s what it is,” I reply. I picked it up as a “free gift” at Hilo Hattie, Hawaii’s premier souvenir shop, last year. With her comment ensues a discussion with the woman in the black cap about the best places to get cheap Hawaiian goods: not Hilo Hattie or the ABC Store, but the flea markets. Lots of folks from here head out to the islands to escape the dreary winter.

As my infusion wanes, the rest of the nurses come to give me a sendoff:  They sing “Happy Last Chemotherapy Day to You!” while clapping, one nurse blowing bubbles, and they give me a Purple Heart certificate of completion and my very own “Save Second Base” T-shirt. (I’m hoping I don’t have to explain the slogan to my kids.) I couldn’t help but cry. Such a relief to have it finished, but the center wasn’t a bad place to be.  I might even miss my Barcalounger.

Nah.

After a beautiful traditional celebration of Christmas here, we spent a few days with family back in my hometown in Ohio. Thomas Wolfe once said you can’t go home again, but that’s not true. You can go home. And it’s good to be there, where you don’t have to be anyone but your familiar self. You just can’t stay there forever.

We spent New Year’s Eve and Day following Japanese tradition, and again I realize an advantage of a cross-cultural family. We get to extend our holiday celebration with gusto. There are no grand Buddhist temples to visit nearby, but my husband again arranged for the osechi, specially prepared foods — fish, vegetables, lobster, and other treats — beautifully arranged in a triple-tiered lacquered box. You can see an example and learn some background here: http://en.wikipedia.org/wiki/Osechi. (I can assure you that he didn’t get ours at 7-Eleven.)

Then we watched the annual TV special on NHK, Japan’s main broadcast network. (Out here you can get TVJapan through the cable company.) The show runs almost 5 hours, has aired since 1951, and is a competition between two teams of singers, the red and the white. The red team is composed of women singers, the white team comprises men. (I don’t know exactly where the performers in drag fit in.) The music is of several varieties:  J-pop (bouncy, popular music), enka (a certain style of singing referred to as “Japanese blues”), and other types, and the performers appear by invitation only. Even though I understand little of the banter that takes place between the acts, it’s great fun to watch the groups perform, some of them in wild costume. You can see one example in the man on the right side of the photo here: http://www9.nhk.or.jp/kouhaku/.

This year’s show featured a couple of surprises:  an appearance by Susan Boyle, the Scottish woman who gained headlines last year with her performance of “I Dreamed a Dream” on “Britain’s Got Talent.” Also making an appearance, albeit vicariously, was Michael Jackson. A Japanese impersonator sang and danced to a backdrop of the most famous of Jackson’s video dance clips. I suspect we’ll see a rise in Jackson impersonators to rival those of Elvis.

But now, with the opening of the New Year, I’m undergoing a mental shift with regard to the cancer and treatment. Of course I rejoice at the completion of chemo, but now I face a whole new set of information to consider with radiation. I can’t know if I’m cured at this point, but I’m definitely focused on preventing a recurrence and figuring out how to live each day with uncertainty. My dad’s advice, based on his own encounters with cancer, is to put it in the back of my mind, and when the worry emerges again, as it will, put it back there again. I’m still searching for the meaning in these events. Reading Paulo Coelho’s The Alchemist, has me thinking about what my Personal Legend is and how to identify and read the omens that will take me to it.

One omen appeared a few days ago, when I stopped in a shop downtown. As I was checking out at the counter, a woman to my left spoke to me, and I glanced over to see who she was and figure out what she had said.  To cover my embarrassment at not having understood her, I said, “Hi,” and she asked gently, “Are you in treatment?”  Her tone was not at all aggressive, not at all like the woman in blue in the bathroom. She stood there gazing at me in her blazing red coat with a head full of thick black hair.  When I told her I’d just had the last infusion, she assured me that my hair would come back “just like normal” and we chatted enough for me to know that she had been down an almost identical path, with the same companions — Adriamycin, Taxol and radiation, which she said was “a picnic” compared to chemotherapy.

The funny thing about omens is that you get to decide if they’re real and what they mean.  I’m taking this woman’s appearance to indicate that I too will be where she is.

More photos, more identities:

If you’re a fan of the Addams Family, you know this character.

Here, I’m not quite home on the range.

Riding Hood vanquishes the wolf.

Apologies to Carmen Miranda.

I couldn’t get the grapes to stay on that Hawaiian headdress.

And here’s that Hawaiian headdress again. New Year’s Eve and the champagne and Obama bucks were flowing.

To close, here’s a link to one of my favorite pieces, Aaron Copland’s “Fanfare for the Common Man,” played by the New York Philharmonic, James Levine conducting: http://www.youtube.com/watch?v=Xzf0rvQa4Mc

A fanfare for all of us.
And don’t we deserve it, just for doing what we do every day of our lives.
A fanfare for our New Year.

This One Has Photos!

The happy drugs are at work, so here I am, going on midnight, typing by the light of the Christmas tree we erected over the weekend.  I’m wrapped in one of my prayer shawls and the wrap I used several weeks ago in my iHop experiment.  It’s still cold here — the dog’s water froze in his bowl outside today — but at least the winds have died down.  This weekend was the first time I’ve seen whitecaps coming from the east, across the bay, since we’ve lived here.

The cold didn’t stop the hummingbirds though.  Matter of fact, we saw two new ones over the weekend — female Annas.  They look to be in need of fattening up.

Today was a day to celebrate for some very important people in my life, my father and my daughter. My daughter entered teenhood today, and I don’t believe it was coincidence that she was born on her grandfather’s birthday. I swear she purposely stalled labor so she could be his birthday present 13 years ago.  Today was a happy day for her; my thanks go to those of you who contributed a page for her scrapbook. It turned out beautifully. And tonight, her celebratory dinner downtown ended with a waiter playing a lively version of “Happy Birthday” on the harmonica, which brought applause from the roomful of diners. Made me wish I could be 13 again.  (Well, for 10 minutes or so, anyway.)

But this is for you, Dad:  Happy Birthday!
I’d play it on my harmonica, but I don’t think you’d leave me a tip for my performance.

Of course, today also happens to be Pearl Harbor Day, an auspicious day for someone with the last name of Yamamoto. The Admiral really didn’t think it a good idea to send the bombs. Too bad the emperor’s advisers didn’t listen.  But because they didn’t, I now have hanging in my house two thick chains of colorful origami paper cranes — silver, yellow, green, blue pink, orange, gold — hand-folded by my dear friends in Japan. These are the first two installments of the total 1000 they are working on. It is their way of sending good thoughts and wishes to me, in the same way the chains of cranes are folded for the memorials in Hiroshima to bring peace and healing. I look at them and know that I am loved.

The Popsicle Report:  Last week, since the doc wasn’t available on Monday for my usual time slot, I had to make another trip to his office on Friday. Since he needs to review the blood counts, I had to wait while the lab ran the tests on the sample they drew from my port. (You see where this is going, don’t you??)  Yes, indeed. TWO popsicles in the same week.  This one, strawberry-orange. I tried it again today to give it a second chance. Not as good as the ones with lemon, but I ain’t complainin’.

The white cell count last Monday was 15.7, but by Friday it dropped to 3.7, so I went ahead with a Neupogen shot, even though the doc said I could wait till this week.  I am determined to stay on schedule, and if a cell count can drop 12 points in 5 days, I’ll do what I can to stop it.  The red cells continue to climb (hurrah!), up from a hemoglobin of 8.7 on Monday to 9 on Friday.  Still low, but better. Must be those B vitamins.  I’ve been released from physical therapy with a set of exercises to do at home. The discomfort under the arm continues but I anticipate a change once I’m off the Taxol. I’m starting to have some neuropathy in my fingers (drat!) — a burning sensation down the backs of a couple yesterday, and tenderness at the tops of the nail beds. It’s intermittent so far, and I’ve managed to get almost to the end of infusions before it showed up, but I’ll be wearing gloves now when I work in the kitchen.

Nothing special on the iPod today. Matter of fact, I was getting annoyed at the shuffle function. Those same darn 817 songs, over and over again. The best today was Los Lobos performing the Monkey Song from Disney’s Jungle Book (“Oooh, ooh, oooh, I wanna be just like you…”).  I assigned this song to one of my students last spring for a short research project in my English 102 class. Poor kids; I assigned each of them a tune off my iPod to do a quick presentation — artist, type of music, meaning, history, etc. — so they got an earful of the music I’ve mentioned here, including Nina Simone and the Gregorian chant.

And in return, they got to choose one of the tunes off their gadget to present later on.  So (in revenge?), I got an earful of Coldplay, the Plain White T’s, and more rap than I care to hear.  One student, though, played Pink Floyd’s “Money.”  He thought music from the 70’s was pretty cool.

The infusion center was quieter this week. Same number of people, but a more somber mood.  Many of the patients have a caretaker with them, and today I noticed a couple of them in tears. One was the wife of a man in my pod. The man looks to be in his 30s and I’ve seen him there many times before. Stocky, fair, with a black 1920s-style motoring cap on his bald head. His sessions are much longer than mine, and he often reaches out to hold his wife’s hand during them. Directly across from me was another man, likely in his 40s, who came in to have the IV site in his arm checked and re-bandaged. He was talkative, cheerful even, and complimented me on my headgear (a warm neck scarf that I bought at Target wrapped around my head; I’ve gotten a reputation at the center for having interesting headwraps). His girlfriend hung over the back of his seat, watching the nurse as she unwrapped, cleaned and rebandaged the area. The man wore a yellow rubber bracelet on his outstretched arm — that Live Strong bracelet designed by Lance Armstrong during his treatment for testicular cancer.

One of the staff people at the center commented that, in reading Armstrong’s book about his experience, she found him arrogant, “a jerk” as she put it.  I haven’t read the book, so I can’t say, but he’s certainly done much to spotlight cancer and push harder for more research.  Perhaps that’s why celebrities get paid the big bucks. They can indeed make a lot of noise for a good cause, when they’re not feeding their own egos, pretending to lose their children in balloons, or crashing White House dinner parties.

Here’s another celebrity of sorts making noise about cancer: http://www.nytimes.com/2009/12/06/opinion/06kristof.html?emc=eta1

This is Nicholas Kristof, a columnist for the New York Times. This week he talks about the environmental influences that may very well lead to cancer.  As he points out, when a 10-year-old is diagnosed with breast cancer (follow the link in his column for that story), there has to be more going on than what you see on the lists of risk factors. And breast cancer afflicts men too. According to the American Cancer Society, in 2009, “1,910 new cases of invasive breast cancer will be diagnosed among men in the United States…[and] about 440 men will die…”
http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_are_the_key_statistics_for_male_breast_cancer_28.asp

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OK, morning now, and I’m feeling that late night. The lowered steroid dose and the switch to Claritin have lessened the rollercoaster effects of the pre-emptive meds, which is good.  They can’t do much to affect the emotional rollercoaster though. As I stood in the kitchen at 6:15 a.m. two weekends ago, watching my husband and kids go out the door to go skiing, it was hard to choke down the anger and sadness. I manage those feelings as best I can (visualize the seedhead of a dandelion — blow those fears and feelings away to let them go), and on that day I took the dog for a beach walk and had lunch with a friend. Now that we’re past the initial shock, the denial has decreased, but fear still takes hold — fear for myself, fear for my family. And that’s in addition to the usual, everyday fears and emotions we wrestle with. For example, as I watched my daughter celebrate her birthday yesterday, I knew that she is on her way to places and experiences that, as her mom, I cannot (and should not) go.

But I do manage to get free of the mental burden for stretches of time, mostly by attending to daily tasks.  And that’s just the moment, it seems, that something external barges in to remind me. Last week it was a woman in a blue sparkly top in a bathroom.  I was attending the gala fundraiser hosted by the hospital where my husband works.  Every year they auction off gorgeously decorated trees and wreaths to raise funds for equipment and their many services.  I dressed in my fancy clothes (the only time I ever do here in the casual Pacific NW), and had chosen a gold brocade headwrap to complement the green chiffon dress. I was seated at a table among friends and was enjoying the action of the auction. Midway through the event, I went to the restroom and, as I came out of the stall to wash my hands, there stood the woman in her frizzled blonde hair and sparkly top, drying her hands on a paper towel.  She looked up, noticed my headwrap and blurted out, “Do you have cancer?”

Stammering for a polite answer (rather than the retort that came into my head), I said “Well, I’m working on getting rid of it.”

She told me how she watched as both her mother and father went through it and reassured me that I would get through it too, came to give me a hug, and chattered on more, but I wasn’t listening.  I couldn’t hear her words through the angry buzzing in my head that told me I’d just been invaded.  Certainly she meant well, but this was not the bonding experience I’d had with the woman at the gas station several months ago.  And I grew more irritated as she followed me out and down the stairs, stopping me at the bottom to brace my arm and wish me “Godspeed.” At these moments, I’ve come to realize that I am the screen that others project their own experiences and worldviews on.  No point in trying to carve out a conversation; the best thing is to deflect and depart.

On my departing note for this update, I’ve included photos from the journey.  The first is from last year, when I was unaware of what was to come.

The second is the interim haircut as more and more started to come out. My son made the crown for me.

This was after my husband’s expert shave.

And finally, a recent one, me in my royal headgear with my son, my faithful and loyal attendant.

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.

A Little Music and Poetry with that Popsicle

Update #19 —  wow, has it really been that many, this long?  The numbers have begun to escape me, and it was the nurse yesterday who figured out that I’m halfway through the Taxol segment, 3/4 of the way through chemotherapy.  Already? And *still* going on?

The two Anna’s hummingbirds continue to visit. We’ve named the second one Teapot because it’s short and fat, like the vessel in the children’s song, “I’m a Little Teapot.”  So now we have Robin Hood and his sidekick…. Teapot.

Since I felt energetic this morning (still the steroid high) and the rain let up, I did some yardwork, and it felt wonderful to be out there in some sunshine (though I may regret this activity later).  I used to wonder why my mother enjoyed — no, thrived — on yardwork, when as a child I wondered just how many times you had to rake a yard in the fall. (At least we got the reward of roasting hot dogs and marshmallows over the burning piles in the outdoor fireplace, back when you could burn leaves.)  With my situation now, being outdoors has taken on even greater meaning — all that green life out there, and the clear air.  I took off my hat and let the breeze blow through the peach fuzz on my head.

The Popsicle Report:  The Popsicle wizard has been looking out for me this week.  When I peeked in the freezer at the infusion center, I counted FOUR boxes of the tastiest Popsicles, the boxes that harbor my favorite flavor.  This time, I thought I’d be adventurous and try a new flavor: blueberry-strawberry.  Very good, but the blueberry-lemon is still best so far.

The infusion center was a busy place yesterday, with a couple of patients going through their first rounds of chemicals and getting the initiation talk from the nurse and the Cancer Society rep.  Listening to the routine made me feel like a veteran. Already? There are far too many of us traveling this road.

The white cell count is a healthy 6.7 with one shot of the Neupogen last week, so we’ll stick with the routine of one booster a week, which should help keep me swine-flu free. That’s a good thing, since since the vaccine is nowhere to be found here for us regular folk. The red cell count continues its slow downward trend, but I seem to be adjusting OK as long as I don’t do too much.

So while I had my imitation Palmolive finger soak (thankfully no neuropathy as yet), I listened again to my iPod:

  • Jazz duets by Itzhak Perlman and Oscar Peterson
  • The Squirrel Nut Zippers, who hit the charts about a decade ago with their lively swing-style music (good for dancing, in my mind, at least, if I can’t do it while I’m soaking my fingers)
  • The mellow trombone of Tommy Dorsey
  • Some Bruce Hornsby (who gave up basketball for jazz piano)
  • Melissa Etheridge (another survivor of breast cancer who quit the Taxol part of her regimen because of neuropathy. Tough to play a guitar when you can’t feel your fingers.)
  • Just for fun: Elvis’ Blue Suede Shoes, Ricky Martin (also good for dancing), Leon Redbone, Blondie, and the Benedictine Monks of Santo Domingo, who also hit the charts about a decade ago with their CD of Gregorian chant.
  • And finally, more Paul Simon, in “Cool, Cool River,” singing this heartbreaking lyric: “Sometimes, even music cannot substitute for tears.”

While I listen to music, some people use visualization during their infusions to help their healing along.  In one of his books, Dr. Bernie Siegel describes images his patients described. One person imagined the white cells as sharks preying on cancer cells.  Others imagined polar bears or laser light, and a little boy said his were white cats pursuing the “cat food” cancer cells. A friend said she was told to think of stomping out the cancer cells with stiletto heels, while someone else imagined the chemo drugs as white knights on horses, doing their heroic battle with the cells (and winning, of course!).

This week, it was hard to miss the news from the government task force that released its guidelines on mammograms, guidelines that starkly contradict the recommendations from the American Cancer Society and practically all other breast cancer organizations (http://news.yahoo.com/s/ap/20091117/ap_on_he_me/us_med_mammogram_advice).

These guidelines made my blood, and all its resident chemicals, boil.  And then I remembered: the mammograms didn’t work for me anyway, so the new recommendation about starting mammograms at 50 would have made no difference in my case.  It does, however, make a difference for those women whose disease would be caught by mammograms during their 40s, and though the task force doesn’t think this number is significant, I suspect it would make a huge difference to the women whose lives would be affected.  As I’ve commented before, mammograms aren’t always effective, but it’s better than nothing, which is what these guidelines seem to recommend, even saying self-exams are of no use. Gee, nothing like the feeling of being a sitting duck. Given that so many women are affected by breast cancer (the popular statistic says 1 in 8, but that’s over a lifespan of 85 years), you’d think the government could come up with a better recommendation, perhaps even start looking into better methods for early detection.

OK, off my soapbox now.

In my continuing play with headwraps, I tried a public experiment a couple weeks ago. At night, after I’ve donned my pajamas, rather than put on another hat or scarf, I usually take my black shawl and wrap it around my head and shoulders, in the Middle Eastern style of the hijab. It supplies a surprising amount of warmth and privacy, if wrapped well. One morning, I met a friend for breakfast in a very public setting, the local I-Hop, and I decided to wear the hijab, wondering if there would be any reaction since it was the day after the awful shooting at Ft. Hood. In all the time we sat and chatted, not one person stared, commented, or seemed disturbed by my appearance. Who knew that a non-event could be so heartening.

It was also heartening to find a poem that reflects my desire to be in a different situation. Apparently even characters from fiction have that wish:

Fictional Characters, by Danusha Lameris
(published in The Sun magazine, November 2009)

Do they ever want to escape?
Climb out of the curved white pages
and enter our world?

Holden Caulfield slipping in the side door
of the movie theater to catch the two o’clock.
Anna Karenina sitting in the local diner,
reading the paper as the waitress
in a bright green uniform
serves up a cheeseburger and a Coke.

Even Hector, on break from the Iliad,
takes a stroll through the park,
admires a fresh bed of tulips.

Who knows? Maybe
they were growing tired
of the author’s mind,
all its twists and turns,

or they were finally weary
of stumbling around Pamplona,
a bottle in each fist,
eating lotuses on the banks of the Nile.

Perhaps it was just too hot
in the small California town
where they’d been written into
a lifetime of plowing fields.

Whatever the reason, here they are,
content to spend the day
roaming the city streets, rain falling
on their phantasmal shoulders,
enjoying the bustle of the crowd.

Wouldn’t you, if you could?
Step out of your own story
to lean for an afternoon against the doorway
of the five-and-dime, sipping your coffee,

your life somewhere far behind you,
all its heat and toil nothing but a tale
resting in the hands of a stranger,
the dingy sidewalk ahead wet and glistening.

—————————————————————

Though we may not be able to step out of our lives like these characters, we can at least dance. This group, especially the guy with the mop, makes me like the color pink again:


http://www.youtube.com/watch_popup?v=OEdVfyt-mLw

TV Ads and Chemo Brain

First up, I need to send a great shout-out to my sister because it’s her birthday today (as well as All Soul’s Day and Dia de los Muertos), and because she and my brother-in-law brightened my week considerably by appearing on my doorstep on my birthday.  ‘Twas a total surprise to me, especially because they live far, far, FAR away, and because my own family (even my son, who’s 9) did a grand job of keeping the secret. Now I know just how big a secret they can keep.

Hm. I’ll take this to be a good thing.

And another shout-out to all of you who have done so much to make this journey more bearable by bringing food, sending cards and care packages, calling and keeping me in your thoughts.  It has made all the difference. As the priest in church said yesterday (before they began the litany of saints:  “John and Paul, Cosmos and Damian, Agatha, Agnes, and Lucy” all the way down to Crysogunus — pardon my bad spelling), when people ask him how he is, he replies, “I am blessed.”  Well, that makes two of us.

The Popsicle Report:  Today, I opted out of a Popsicle. When I surreptitiously checked the freezer at the infusion center, I saw only a half-dozen sad, over-crystallized fluorescent tubes.  Perhaps I’ve gotten spoiled (as far as Popsicles go, anyway), but those just didn’t look worth having.

Today was infusion #4 of the Taxol, #16 in the series of 24 total infusions, so I’m two-thirds of the way through.  There’s no reason to expect any delays (fingers crossed), so I should be able to finish by the end of the year.  With holiday travels, the last infusion may end up being on New Years’ Eve.  Auspicious timing, I think.

After the energy-level roller coaster of the past couple weeks — steroid high, Benadryl crash, steroid high, steroid crash — I thought to ask the oncologist if we could make some changes to lessen the upheaval.  The rate of brain activity made me think I was channeling Robin Williams (even though he’s not dead yet) at his most manic stages. If you like him you can find plenty of his clips on YouTube.

So today, we made some changes in the pre-emptive drugs I take before the Taxol.  Instead of Benadryl, it’s Claritin, which doesn’t bring on the dozing.  And we’ve reduced the dose of dexamethasone to lessen the steroid high. I’m all for being happy, but can sacrifice a bit of happiness to gain a better chance at sleep.  The melatonin suggested by the naturopath hasn’t helped, so I’ve gone back to the Ativan and will try to get back to natural sleep once the chemotherapy ends.

My white cell count was a plain old, normal 5, but Dr. L wants me to do a couple Neupogen shots this week.  Since the count last week was 21, it’s hard to know if the white cells have leveled off now or might drop further.  Working with the Neupogen this week might clarify that. Now if I could only track down that elusive swine flu vaccine to complete the picture….

There have been some positive changes now that the remnants of the Adriamycin and Cytoxan have dissipated.  No more heart palpitations, except what I’d always had, or ringing in the ears. My mouth feels better, and food tastes better, though not quite right yet, which I realized again with an attempt last night to eat some chips and salsa.  And my stomach isn’t so acidic. Gosh, I might even attempt a glass of orange juice soon.  Yippee!

But of course there are trade-offs.  A slight oozing of blood in my nose, which is caused by the Taxol, and no improvement in the anemia. White spots starting to show up on my fingernails, and my eyebrows are slowly disappearing. No sign of joint/muscle pain (fingers crossed again), but I’m going ahead with the preventive maneuver of fingers on ice to prevent neuropathy.

Instead of the ice packs of last week, this time it was tubs of ice water for the full immersion effect during infusion. Since I couldn’t write in my journals during that time (I keep one of my own plus one for each child), I plugged in my iPod and gazed out the window. (I make a point of picking the Barcalounger with the best view.)  Outside was a glorious old maple tree, thick variegated trunk sending up two dozen close-packed branches to today’s clear sky, the ubiquitous Pacific-northwest moss spreading over at least half the tree.  It would be a fantastic tree for climbing if you can get a leg up. The tree is still hanging on to about half its yellow leaves, but it lazily surrendered a few now and then to float to earth. Sure beats watching pictures on a TV screen any day. Thankfully, there are no TVs in the infusion center.

So for the hour of the infusion, I watched the tree and listened to my tunes (on shuffle mode, of course):  some reggae from Bob Marley, Queen’s “Bohemian Rhapsody” (I’m not ashamed to admit), Santana, Bonnie Raitt, Ron Carter (playing jazzed-up Bach on his stringed bass), James Taylor, and Mozart’s clarinet concerto.

Look, if ya gotta pump poison into your veins to knock out a deadly disease, the more comfortable and distracted you are, the better.

As I’m typing this, my daughter is practicing the Shostakovich piece on the piano downstairs while my son is plucking away at “When You Wish Upon a Star” on his guitar in the kitchen. Shostakovich and  Disney. Perhaps this is what they mean when they talk about cognitive dissonance?

So anyway, while I listened, watched, and soaked (but didn’t doze), I was reminded of another image of fingers in a bowl.  Of course we document our age if we recall it but — do any of you remember Madge, the manicurist, in that Palmolive TV ad of years ago?  She’d soak her clients’ hands in dish soap because it was supposedly so gentle and effective.  I half expected to glance over and see her in her smock, sitting on a stool at my table, half-moon glasses slipped down her nose, nail file poised in midair.  And I wasn’t the only one thinking this. One of the nurses described the same memory when she walked by and saw me soaking my hands.

This is the second image from a TV ad I’ve connected to my experience.  The other one is the Cream of Wheat bowl.  That bowl followed me around in my mind, as it did the children in the TV ads of my youth. I much prefer the image of a soothing, heartening protector following me around.  Sure beats the Sword of Damocles. (If you want that whole story, you can find it on Wikipedia: http://en.wikipedia.org/wiki/Damocles.)

One other side effect that has not yet appeared (though some might beg to differ) is the dreaded “chemo brain.” Here are the symptoms, according to the Mayo Clinic:

Signs and symptoms of chemo brain may include:

  • Being unusually disorganized
  • Confusion
  • Difficulty concentrating
  • Difficulty finding the right word
  • Difficulty learning new skills
  • Difficulty multitasking
  • Fatigue
  • Feeling of mental fogginess
  • Short attention span
  • Short-term memory problems
  • Taking longer than usual to complete routine tasks
  • Trouble with verbal memory, such as remembering a conversation
  • Trouble with visual memory, such as recalling an image or list of words

(www.mayoclinic.com/health/chemo-brain/DS01109/DSECTION=symptoms)

Well I don’t know, but I suspect many of us could lay claim to some of these symptoms some of the time, even without going through chemotherapy. A friend told me he knew of someone who claimed she bought a whole roomful of furniture under the influence of chemo brain. I haven’t yet had the urge to amass couches and chairs, but if I do something equally wild, you’ll know why.