What Was It?

Today marks a year since I began chemotherapy.  And still I wonder, what was it?  What brought it on?

Perhaps it was some misaligned genetic code written in my cells before birth.

Perhaps it was the weed killer sprayed between my bare juvenile toes on the cracks in the front sidewalk
Or the summer clouds of DDT rolling through the neighborhoods in search of mosquitoes.

Better living through chemistry.
We still believe it.

Maybe it was the smoke curling upward from the ember of my father’s cigarette, that glowing ember bobbing through my room at night, assuring me Dad was home.
The liquid balls of mercury from the broken thermometer that we rolled around the table in play?

Or maybe it was the teenage years of nail polish
The adult years of hair color
Lotions, perfumes and toothpaste
The chlorine in the backyard pool and the water from the faucet

Maybe alcohol set the stage and the Pill acted its part.

Pesticides on the broccoli?
Hormones in the beef?
The everyday stress of every day
These old metal fillings in my mouth

The air, the water, the land
Hard to believe such beautiful things can kill.

God reminding me to live


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.

The Year Passes, But the Path Continues

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

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

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

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

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

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

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

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

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

I’m not sure I can answer that yet.

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

This Anger Shall Not Be Managed

The anger bubbles up in my veins. Simmering. Sharpening my focus.

It is early evening. The lights of  the Capitol reflect on the still surface of the lake. The ship in port glows at the dock.  The mist rises up from the field as we drive by on our way home from dinner, my daughter beside me in the car, budding into her sweet adolescence. All of this beauty.

And I burn.

For it is now that I understand it.  Now that I want to drink it in, absorb it through every pore. Now that it finally makes sense to me.  And even now that it may slip away.

I am angry at this cancer. This insidious disease that can take away the beauty, that has taken it away from so many others. So many of us who did nothing to warrant its attention, its choice to include us in its community.

I read and re-read all of those guidelines for living a healthful life, and the anger surges.  Wasn’t I one who did those things, who went for the bike rides and climbed the trees, who ate the raw kale for lunch at work, who never spent her Friday nights imbibing in bars. Didn’t I fight for good sleep even as my children cried in the night?  Haven’t I refused to block drafts in the house so we don’t live in a chemical box? I’m one who has walked when she could have driven, who’s repulsed by the cell phone and electrical towers, who lifted the weights and assumed the yoga positions, who went for all the check-ups and talked about the stresses of life. Yes, I’m female and growing older, and yes, I had my children late. But none of those other risk factors apply to me.

But still, I become its victim, and feel its threat to take away the beauty of my life.

And I refuse.

I refuse to let it steal the moments of joy, the chance to see my son kick the summer soccer ball, my daughter’s brilliant smile, even with the braces.  I intend to see them become, to see them eventually placed into the hands of  someone else who dearly loves them.  To see my own possibility, when I’ve only begun to blossom again after the years of self-denial demanded by responsibility.

The Buddhists say that life is suffering, that through pain we find joy, and maybe that’s why cancer came to visit me, to remind me to see it. To see beauty.  And to not forget it in the bustle of daily life. The pink dogwoods on the brink of bursting into the delicate flowers that float on the branches.  The frog’s spring song. Their life resonates in mine.

Resurrection Stories

This being the Easter season, it seems appropriate to focus on stories of resurrection.  Not just my own, with respect to finishing the cancer treatment and moving on to whatever awaits me, but for others as well.

Phil Mickelson is the first one to come to mind.  Pro golf fans know his name well and know that he won the green jacket at the Master’s tournament today, even though he‘s not always a consistent player. I grew teary-eyed during the final hole, watching him play and seeing that pink ribbon stitched on the side of his cap in honor of his wife Amy and his mother, who are both being treated for breast cancer. As I’ve mentioned before, I’m not a fan of that ubiquitous ribbon, but this was one time I was glad to see it on display.  Here’s a guy who deserved to win, to have his hard work acknowledged and his career resurrected.  (As for Tiger, well, I don’t believe he’s been either resurrected OR reformed.)

Today’s local newspaper headlined the story of a man in a nearby town who is working hard to resurrect his own son. David Beshears was seriously injured by a roadside bomb while serving in Afghanistan 2 years ago. David’s father, who is also named David, has self-published a book about his son’s treatment and recuperation and still works with his son daily to help him recover. Though he himself has spine problems, Mr. Beshears’ goal is to climb Mt. Rainier every year, beginning this summer, until the day his son is able to climb with him. It’s a remarkable story. If you’re interested, you can read about it here:

Also in today’s paper is the story of a young woman who has experienced her own resurrection after a canoe accident 10 years ago. Carly Boohm was a high school junior practicing for a river relay race when her canoe capsized in a strong current and she was submerged under water for 45 minutes. In the course of her recovery, her heart failed three times. She eventually went on to graduate from high school and talks about her life since then in this story:

My own resurrection is not nearly as dramatic as these. Overall, I feel well, but suffer that fear of recurrence that I‘m told is prevalent especially for the first year after diagnosis. The odd spots on my fingernails have almost grown out.  My left armpit is still numb and some discoloration from the radiation remains, but is gradually fading.  I have my hair back — and when I bought a beautiful scarf at the LA County Art Museum last week, it was for my neck, not my head! My energy and mood flag sometimes, and I feel a tremendous stiffness in muscles and bones, which the acupuncturist attributes to the heat and drying out of tissues caused by chemotherapy and radiation (as he explained it, a decrease in the “yin“, the feminine part of that yin-yang balance). But these things are minor compared to what could be.  A couple weeks ago, I attended my first yoga class in almost a year, one designed specifically for cancer survivors (another part of the integrative services offered by the oncology center I go to).  One of the women in the class was still recuperating from a double mastectomy 2 years ago that lead to lymphedema in one of her arms.  There but for the grace of God…

And so, to keep my balance, I continue to look for (and share with you) humor and inspiration (along with those regular bouts of righteous indignation). Here are a couple of websites I stumbled across recently. These are not about resurrection (if you want humor about that, read Lamb by Christopher Moore), but they do relate to Easter, at least the secular part involving those luridly colored marshmallow Peeps.

Here they are making their contributions to science: http://www.peepresearch.org/surgery.html

And here they prove that they do indeed know how to do research: http://www.millikin.edu/staley/about/peeps/Pages/default.aspx

Have a Laugh on Me

Spring is gorgeous here, cherry and pear trees in full bloom, tulip buds coloring up, and a new hummingbird at the feeder.  The longer days are rushing by. Our house is decorated for Easter and still sports the balloons and flowers some dear friends gave me at a celebratory lunch after the end of radiation therapy. I am still  immersed in post-cancer reading but am trying to balance it with humor.

Last week, I attended a 1-day conference for cancer survivors.  Not just breast, but any type of cancer. Lots of sessions to choose from — exercise, mindfulness, sexuality after cancer (with toys and samples!) and yes, humor.  This session included a story about Linda Hill, who has survived four rounds of cancer and started her own line of T-shirts. The slogans on these shirts include:

I lost my colon but I’m still full of crap.
Of course they’re fake, the real ones tried to kill me!
Mastectomy: $12,000. Radiation: $30,000. Chemotherapy: $11,000. Never wearing a bra again: Priceless.

(I was reviewing my insurance statements this week and can attest to the fact that the cost of radiation is indeed $30,000 or more.)

If this sort of humor interests you or you just gotta have one of those shirts, you can find more on her web site:

The keynote speaker at the conference was Debra Jarvis, a chaplain who works at the Seattle Cancer Care Alliance. She’s written several books about dealing with chronic disease and based her talk on her own experience with breast cancer.  But before she began her message, she stepped out from behind the podium , grabbed her right breast with one hand and pointed at it with the other, saying “You want to know which one is fake?? It’s this one!”  And then she calmly stepped back behind the podium, explaining that, if she didn’t point out the reconstructed breast early, the audience members would spend most of her speaking  time trying to figure out which one it was and miss the whole talk.

I have to say it — her gimmick worked, and the audience was very alert. She had humorous stories to tell, but her message was serious:  It’s not about the hair. We all have to find our own meaning in the dark experience that shakes us awake, and once awakened, we must not go back to sleep.

Here’s a link to her website: http://www.debrajarvis.com/
And a hilarious article she wrote for Cure magazine about dealing with a certain intimate problem in the aftermath of chemo. Beware, it‘s a little racy: http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1246

The Association for Applied and Therapeutic Humor defines therapeutic humor as “any intervention that promotes health and wellness by stimulating a playful discovery, expression, or appreciation of the absurdity or incongruity of life’s situations.”

Yeah, well, nothing like a boring definition to take the fun out of things.  Thankfully, the association itself appears to be little more joyful and lists lots of resources and links to fun (if slightly academic) materials and websites.  I plan to check out the link to Clowns Without Borders.

For additional overanalysis of fun, there’s also the International Society for Humour Studies (www.hnu.edu/ishs/) with its many links.  One of these is to a scholarly organization called the International Society for Luso-Hispanic Humor Studies, which tracks the study and appreciation of humor wherever Spanish and Portuguese are spoken.

I’m glad to know people are laughing in other languages. But the names of these organizations make me think the members have missed the point.

So if what you really want to do is laugh, not study it, there’s the World Laughter Tour (www.worldlaughtertour.com).  This group tells us that April is humor month (get ready! They‘ve got free resources on the website), and World Laughter Day is coming up on May 2. And if you want to join a laughter group, get in touch with them. Think globally, laugh locally.

Now that’s my kind of support group.

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…..