Cancer: It’s Not Just for Old Folks Anymore

First, there is Julie — breast cancer, age 48

Then, a few of the famous:

Lance Armstrong, bicyclist — testicular cancer, age 25
Melissa Etheridge, singer — breast cancer, age 43
Dan Shapiro, psychologist and author — Hodgkins’ disease, age 20
Sheryl Crow, singer — breast cancer, age 44
Audre Lorde, poet — breast cancer, age 44
Gilda Radner, comedian — ovarian cancer, age 40
Christina Applegate, actor — breast cancer, age 37
Scott Hamilton, skater — testicular cancer, age 39

And the not-so-famous:

Yvonne, a woman in a cancer workshop I attended — breast cancer, age 48
Cheryl, my roommate from graduate school — breast cancer, age 47
Kim, a friend from my online survivorship workshop — breast cancer, age 41
“Rotorhead,” another participant in that workshop — colon cancer, age 42
M____, a third participant in the workshop — bladder cancer, age 26
Janet, an acquaintance from the neighborhood — colon cancer, age 42
A colleague of my sister — breast cancer, age 26
Marta, a friend — ovarian cancer, age 47

And all those whose testimonials appear on Stupidcancer.com (I’m Too Young for This!), which tells us that 70,000 young adults are diagnosed with cancer every year (http://i2y.com).

Trust Your Dog, Not Your Mammogram

This Sunday’s newspaper included the usual issue of Parade magazine.  Those of you familiar with Parade know that it includes articles about celebrities, topics of general interest, a few comics, and some mental puzzles, with lots of ads about TV shows, cosmetics, weight loss systems, and trendy gadgets.  I usually skim through it quickly before I read the newspaper, but this week’s issue had me poring slowly over the cover articles, all of which deal with cancer (www.parade.com).

The cover’s photo is of Lance Armstrong, decked out in biking gear, holding his year-old son.  Most of us know that, besides winning the Tour de France a record-breaking 7 times, Lance Armstrong is also a cancer survivor.  He was diagnosed with testicular cancer at the age of 24 and has, since then, been instrumental in putting the spotlight on research for cancer.

The first article details the experience of two other cancer survivors who also received their diagnosis at a young age — a man with leukemia at age 25, a woman with bladder cancer at age 41 — and describes some of the medical problems that can linger after treatment for cancer: pain, fatigue, and cognitive impairment, among others. According to this article, I’m a NED — someone with No Evidence of Disease.  Thankfully, I don’t have the problems the article talks about either.

The second article details the valuable work of hospice caregivers, while the third article tells you how to beat colon cancer through early screening. Later in the issue, a chart lists the top 10 cancers along with the amount of funding the government supplied for each in 2009:

Lung and bronchus:                   $246.9 million
Colon and rectum:                      $264.2 million
Breast:                                              $599.5 million
Pancreas:                                           $89.7 million
Prostate:                                          $293.9 million
Leukemia:                                       $220.6 million
Non-Hodgkin’s lymphoma:     $130.9 million
Liver:                                                  $70.3 million
Ovary:                                               $110.1 million
Esophagus:                                        $28.8 million

These numbers come from the National Cancer Institute.  As you can see, they don’t reflect the impact of the various types of cancer. They also do not include funding from the American Cancer Society, which also spends more on research for breast cancer than any other type.

That’s good for those of us who’ve had breast cancer.  Not so good for people with other types. (And we can only speculate about why researchers are significantly more interested in breast cancer.  Is it because there‘s more money to be had?  Or are breasts more interesting than, say, lungs.)

But it was the last article in the series that really made me sit up.

Perhaps you’ve heard about the ability some dogs have to predict earthquakes and the onset of seizures in people with epilepsy.  Now, it seems they might also have the ability to detect cancer.  In a study done in 2006, five dogs “were able to correctly spot breast cancer 88% of the time and lung cancer with 99% accuracy — rates that compare favorably to chest X-rays, CT scans, and mammography”  (“Sniffing Out Disease” by Susan McCarthy, www.parade.com/health/2010/06/20-dogs-sniff-out-disease.html).

Well, shoot. Why did I spend all that time and money on mammograms that did me no good? I could have just cozied up to my dog.

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…..

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.