The Pink Month

So there it was when I opened the carton — that damned pink ribbon stamped all over my eggs.

Yes, it’s that month again, time to be aware of breast cancer.  If the eggs don’t get to you, the Sunday comics will.  I tried to overlook the ones printed in pink a couple weeks ago.  Then yesterday, the sign posted at the grocery checkout said that, if the cashier forgets to ask you if you’d like to make a donation to breast cancer research, you would get a free 2-liter bottle of soda.

Can we all say it out loud now?

This is nuts.

Absurd.

Ridiculous.

Try to find the logic in it.  If we DON’T ask you to contribute, you WIN some soda — 2 liters of the stuff that, for all we know, may help contribute to the very disease we’re trying to eradicate.

I’m all for bringing awareness to a serious topic. (Did you know it’s also Domestic Violence Awareness month? I wonder what the color for that is.) Since I can’t fight the marketers who try to fool us into believing that buying something pink will save us all, I’ll do my best in this post to bring an educated awareness to the topic.

Two items have caught my attention in recent weeks.

First, it’s important to know that cancer is not one disease but a complex set of diseases, and to anticipate a single cure is to court disappointment.  With breast cancer alone, there may be as many as a dozen varieties (in situ, invasive, inflammatory, lobular, triple negative, and then ER+, PR+, Her2 Neg, and any combination of these last three). So, when we hear people talk about finding “the cure” for cancer, breast or otherwise, we need to understand the complexity of this task.  Thus, one blogger has taken Gordon Brown, the current prime minister of England, to task for being overly optimistic about the role Britain will play. You can read about it here. Some of the comments after the post are telling.

There is good news, however, from the Triple Negative Breast Cancer Foundation, the group that focuses on people like me. The booklet they’ve just released  (“Guide to Understanding Triple Negative Breast Cancer”) clarifies the confusion about the different types of breast cancer and treatment, and reports the progress of current research targeting triple-negative disease.

Some investigators blatantly state that the prognosis for those of us with triple negative disease is poor. The booklet helps dispel that idea with this hopeful information:

“Studies show chemotherapy works better against triple-negative cancers than hormone receptor-positive breast cancers.”

And this: “After five years, your risk of recurrence goes down. In fact, as time goes on, your risk for recurrence may be lower than that of someone treated for estrogen receptor-positive breast cancer.”

And I like this news best of all:  “Most women with triple-negative breast cancer never have a recurrence or a new cancer.”

Of course, I’m hoping to find myself in that group. All of us women hope we never have to be in any breast cancer group at all.  And I hope there are many other skeptics like me who wonder if focusing on awareness isn’t actually impeding progress in finding cures. For more on that discussion, read this column from the New York Times.

To be honest, I’d just like to eat my eggs and read my comics in peace.  Besides, there are so many more beautiful colors to choose from at this time of year.

What Do the Squirrels Know?

A Sciuridae

Image via Wikipedia

This past weekend, I was standing in the backyard of my parents’ house, gazing up into a clear azure sky, watching two hawks wheel among the tops of the trees.  The trees themselves are starting to turn, though few leaves have fallen. At the foot of the old cherry tree, the tree I used to climb as a child, the squirrels have mounded walnuts they’ve gathered from the neighbor’s yard. The large green hulls look out of place under a tree known for its delicate white blossoms in the spring. The nuts are piled up against the trunk, laid out among the lower branches, and wedged into niches further up. This is the first time my parents have seen this phenomenon in the 48 years they’ve lived in the house. What are the squirrels thinking?  And how did they get the nuts, bigger than their own heads, to this tree from the neighbor’s yard?

Watching the hawks, I recalled where I was a year ago. Early October 2009 marked the halfway point in my chemotherapy regimen, the switch from the Adriamycin and Cytoxan to the Taxol.  I was managing pretty well, but not at all sure I’d be here now to see my children decorate the house once again for Halloween.  It is said that cancer patients feel a special poignancy around the time of holidays and other life celebrations, and I can attest to the truth of that statement. I cannot put into words the tremendous relief I feel at being finished with treatment now. But I also cannot put into words the impact the diagnosis has had on my thinking.  I see now that I am not invincible, but I can be resilient.  The old Japanese saying is:  Fall down seven times, stand up eight.

Though I can’t yet pin down all the internal changes brought about by having had cancer, I can register the external differences from a year ago.  I still carry colorful rocks in my pocket and Sts. Peregrine and Anthony hang round my neck. For awhile, I was obsessed with reading the obituaries in the local paper. When it became too disturbing to see so many deaths from cancer, I quit reading.

The shelf in my shower once again holds too many shampoo bottles. The scarves and hats that rested on the chest at the foot of my bed are gone. Some found their way back to the oncology center, some are tucked away in a drawer, and the regal purple one with the gold thread is now in my daughter’s closet.  The mouth rinse no longer sits on the bathroom counter, and the refrigerator is empty of syringes.  Best of all, I can once again race up stairs and climb the driveway to the mailbox without having to stop for breath.

As I drive by the oncology center on my way to work, I look at the large tree by the windows and recall watching it lose its leaves last year as I sat inside with the chemotherapy nurses.  I think about those brave people in there now, working or getting their treatment.  It was a good place to be during a time of terror, but I’m glad to be on this side of those windows. I never want to go there again.

Instead I want to contemplate:  What indeed do the squirrels know?

It’s Just a Word

A couple weeks ago, I had the next in my series of 3-month check-ups since the end of chemotherapy last December.  Except for a lingering abnormality in the size of some red blood cells, which I’m told takes awhile to resolve, everything looks good and I am feeling well. My energy has returned to normal, and I’ve returned to teaching and other professional work. As I gain distance from treatment, it’s easier to not think about cancer, though I’m not sure I will (or should) ever forget about it.

But out here on the part of the journey called survivorship, I’m trying to figure out the steps along the way.

One of those steps is figuring out what to do to maintain good health. After the flurry of treatment schedules, the relative freedom of the post-treatment period can leave you feeling like you’re not doing anything to combat the disease. In theory, the cancer is gone, so what then is left to do?

We Americans like the idea that we’re taking action. Whenever a challenge appears, inevitably someone shouts, “DO something!” So, after cancer, some take up the work of promoting awareness, others get involved in advocacy for funding, and we can all buy something with a pink ribbon on it.

So what am I doing? Well, I’m writing this blog and I continue to explore alternative therapies and work with the naturopath.  There’s nothing like a yoga class and a handful of dietary supplements in the morning to give you the feeling that you’re doing something.

Another step in survivorship is figuring out what to answer when people ask what they should say to someone else they know who has cancer.

Last month, it was a neighbor who asked. Last week, it was a friend at work. The friend at work told me about his sister’s death from cancer, in greater detail than I would have preferred, including his observation that cancer allowed his sister to gain the attention she never received in life. Cancer takes many roles in the lives of people and their families, but this is not a role it should assume.

The man then told me about a friend of his, a fishing buddy, who had just been diagnosed with lymphoma. His anguish over his friend’s situation was clear as he described how he and his buddy would rise at 5 a.m. to go fishing at the lake. Along with his friend, he was struggling with the diagnosis and didn’t know what to do.

According to recent projections from the World Health Organization, cancer may soon become the primary cause of death across the globe. It’s not hard to see that cancer will likely touch all our lives.  And so, what  DO you say to someone who has cancer?

I can’t speak for every cancer patient, but I can  tell you this.

No one wants to pass through that doorway to the room marked Cancer. Society still views cancer as an instant death sentence, but that’s not an accurate picture of what’s true. But my experience was not nearly the horrifying series of events I’d imagined, and what I discovered along the way was  a whole lot of life, lived in a new way, and only the same shadow of death we all discover on our own journeys.

Perhaps I’m a lucky one, but I know I’m not alone. According to the National Cancer Institute, there are almost 12 million — 12 MILLION — cancer survivors in the U.S.

And I can also tell you this:  Don’t call it “The Big C“ or “The C Word.”  Call it by its name, the same way you name any other illness: diabetes, hemophilia, asthma, whatever. If you hide from the name, you can’t help your friend find the courage to face it.  As the cross-stitch sampler on the desk at the infusion center states, Cancer is a word, not a sentence.  If you can say its name, you can help your friend stare it in the eye and say, “I see you, but you will not have me.”

Now, what do you DO for someone you know who has cancer? You offer them the best you’ve got to help them affirm life. If it’s a simple nod of recognition to a fellow bald-headed chemo patient at the gas station, then nod. If it’s an offer of help while they go through treatment, offer the help they need, which is not necessarily the help you think they need.  If it’s diverting their attention to other things, then tell them a grand story. If it’s a story about someone else with cancer, make it a hopeful one.

My most startling discovery was that, even in my fear of death, life continued. Do what you can to help them affirm life. And if fishing it is, well then, get out that tackle box and head to the lake.

Her Story Is Not My Story

Last Friday, my family went out to eat, to a place we go to frequently. Our waitress was a woman I’ve mentioned here before, a woman whose mother underwent chemotherapy for esophageal cancer at the same time I was being treated.  The woman who defined sex for her 80-year-old mother as “doing the horizontal mambo.” The one who had decorated the radiation mask and hung it over her mother’s bed.

I asked how her mother was doing. When I’d done so back in the spring, she replied sprightly, “She’s doing well.”  This night, though, she hesitated ever so slightly before answering, “Thank you for asking.  She’s taken a turn for the worse.”

It seems her mother developed an infection at the site of radiation and no treatment has been able to clear it up.  The doctors have also diagnosed lung cancer, but can’t do surgery or prescribe chemotherapy because of the infection. The woman’s mother has been in a nursing home, but she will be bringing her home soon for her final days.

The new woman in the yoga class talks of her recently diagnosed carcinoid cancer.  She’s a friend of the woman who had the double mastectomy and is fighting lymphedema in both arms. There’s also the friend who tells me of her friend who’s been diagnosed with breast cancer at age 26, and a woman at a workshop I attended who has both breast and ovarian cancer.  She refers to herself as “the weepy one.”

People seem to need to tell me about other people they know who have been diagnosed with cancer.
And I don’t mind.
I really don’t.
It reminds me that I am not alone.

Many of these stories confirm what I believe to be true.  Cancer is not a disease of old age. The more I read, the more I believe it arises in many of us because of environmental influences.

Each time I hear of another, though, the fear rises and I have to choke it back.

After the wave of panic passes, I tell myself:  Her story is not my story.
Her fate is not mine.

I am too young to have this illness.  But the 26-year-old is REALLY too young.
That woman may have lymphedema, but I don’t (fingers crossed).
I am sorry for them.  No one deserves this diagnosis.

But her story is not my story.

Be Aware, Be Very Aware

You’ve no doubt heard the term awareness with regard to a number of topics: trans fats, mental illness, pollutants in the water and air, body fat, smoking, the decline of the honeybee. Awareness is something we’re always trying to raise. So many issues to be aware of, too many voices clamoring for the same audience. Impossible to keep up.

The term cancer awareness attempts to make the general, unafflicted public more aware of cancer — its causes and risk factors, the effect it has on society. A recent article even pins down the cost of cancer in hard numbers: nearly a trillion dollars lost in the worldwide economy from premature death and disability due to cancer. With this sort of news, how could anyone not be aware of the impact of cancer?

My own awareness, though, is now of a different sort.

A little more than a year ago, I was made painfully aware of cancer, something I didn’t think would ever come to visit me.  And now that I’m past the intense treatment, muddling along with my new hair in the stream of “survivorship,” I’m able to forget, for long periods of time, that cancer indeed plays a role in my life.  (That’s the damndest thing about cancer.  Even if it never comes back, it still owns part of you because you can never be sure.)

But then, during the course of an average day, I am once again made aware.

I’ve noticed now a habit of misreading words, a subliminal prompting perhaps.  On the computer screen, I read the button on a page that says cancel and momentarily see cancer.  In looking through the stack of folders on my desk, I come across the one labeled — what’s that? — cancer? No, no. That’s Career written on that tab. Maybe I just need reading glasses.

On a recent trip east with my family, we went to an amusement park to ride the roller coasters. Standing behind me in the line for the Blue Streak was a woman wearing that telltale baseball cap, frail wisps of hair sticking out, and a black T-shirt with one of the current trendy slogans for people affected by breast cancer:  “I love boobs. Let’s save them all,” enhanced by that ubiquitous pink ribbon.

Now I hate the use of that term to refer to breasts. Really, do we want to be calling our body parts by derogatory names?  But I admired the woman’s courage, and rejoiced in being back in the line for the Blue Streak myself, a year after my own ride on the cancer roller coaster began.

Until the moment I caught sight of the woman, though, I had been thinking about how hot it was and wondering how my son would tolerate the ride this year.  Now that I have hair, anyone who didn’t know my story would never guess what I’ve been doing all year.  I thought for a moment about speaking to the woman, but found myself in the quandary that others have likely found themselves in with me.  Do I intrude into her thoughts, introduce myself and commiserate with her?  Or do I let her have her privacy?  There were those who intruded unpleasantly into my space, but I also remember the woman in the red coat who spoke to me of hope and whose message lifted me up. If I spoke to this woman, which role would I play for her?

I’ve become aware, but still lack awareness.

Later in the trip, while mindlessly reading the Sunday paper, I came across a review of Promise Me, a book by Nancy Brinker, the sister of Susan Komen and the one who established the famous foundation.  And there it was again between the Living section and the comics, another moment when cancer intruded and made me aware.

And then again when we traveled on to Washington, D.C.  There I was contemplating airplanes while standing in the crowd at the Air and Space Museum and suddenly I saw four people with T-shirts bearing pink ribbons, promoting various races for the Cure.  (Some race, huh? President Nixon declared war on cancer back in 1971.  Maybe the length of this race explains why there are now more walks for the Cure. It‘s hard to keep a race going for 40 years, even with relays.)

And finally, on our flight back home, I glanced up from my seat to see a woman settling into the seat directly in front of mine. Full make-up and earrings. A head covered with stubble, indicating a recent shave. I sat there remembering how that stubble gets rubbed off pretty quickly.

How could I be sure the woman was being treated for cancer and not just flaunting a lifestyle choice? The flight attendant was extra solicitous, bringing her for free one of those snack boxes they now make you pay for.  Once again, I wondered whether to speak but chose not to, suddenly understanding my own hesitance.  By initiating a conversation, I would drag myself back into the pit that I’ve been managing to get out of for good lengths of time.

Instead, I became more aware of the man sitting next to me, who downed four of those small bottles of whiskey with his Coke during the course of the flight.  I can only guess what particular awareness he was trying to obliterate.

If you really want to get total awareness of cancer and its impact, tune into any of the major TV networks on September 10 to watch Stand Up To Cancer (8 p.m. EST).  You can find out more about the program here.

Everything and Its Dog

Here’s a quiz.

Which of the items listed below is something you *do not* want to see on a pathology report after a breast biopsy?

A.  Fibrocystic changes
B.  Hyperplasia
C.  Microcalcifications
D.  Columnar cell change
E.  Atypical hyperplasia
F.  Sclerosing adenosis

The answer is E.

Thankfully, item E did not show up on the pathology report from the two biopsies I had of the right breast two days ago.  This was the good news Dr. L delivered when I answered my buzzing cell phone this morning.  Every other term listed here appears on the report. I had no idea there were so many varieties of benign cell changes in the female breast. Some of them sound pretty awful, but even hyperplasia is OK as long as it’s not atypical, a situation that could indicate the beginnings of cancer.

The biopsies were the result of some “suspicious findings” (as the pathology report puts it) on the right side on the 6-month follow-up MRI scans I had taken last week.  (Skipped those dastardly mammograms, thank you, and went directly to the big machine.) Fortunately, all is clear on the left side where surgery was done a year ago. Dr. L gave me the choice of having the biopsies or waiting another 6 months and checking again.

Look, I’ve learned a lot about mastering anxiety over the past year with stones, yoga, prayer and all those “woo-woo” techniques, but I’d have to be nuts to just wait.  So there I was again a few days later, face down on the MRI table, arms overhead as in a poorly executed dive, breasts inserted into their appropriate slots, allowing Dr. B to poke me with large needles.

This biopsy differed from earlier ones in that it was stereotactic, which means the technician calculated the exact locations of the “suspicious findings” using a computer and the MRI images.  The previous biopsies were done with me on my back while the radiologist located the problem areas using ultrasound.  A stereotactic biopsy is called for when the abnormal areas are too small to be located on either mammogram or ultrasound. The computer lines up the coordinates and the doctor can extract what is needed  for analysis and place a tiny clip in the spot that was biopsied for future reference.  Dr. B took  6 samples from a spot at the 8-o’clock position on the breast, and 12 from the spot at the 10-o’clock position.

You’d think that, with all the holes poked in my breasts by now, anything nasty would just leak out. If we keep going at this rate, I’ll be down a cup size, but I don’t think bra manufacturers make anything smaller than what I’ve already got.

By itself, the MRI procedure is nothing to fear.  No sharp instruments, no radiation. Just some loud banging and knocking. Though your position may not be the most comfortable, you do at least get a headset and your choice of music to listen to.  During the initial scan, I chose classical music, and was nearly in tears when Tchaikovsky’s “Waltz of the Flowers” came to my ears.  It’s not that I particularly love Tchaikovsky or  the over-sentimentalized “Nutcracker,” but what it brought to mind in that moment were the many dance recitals of my childhood, on the stage in my costume under those hot lights. (Surely every ballet student has danced that waltz.) In my dread of what the MRI might find, the music reminded me of a childhood long since gone.  Beauty and happiness are often recognized only in hindsight.

Next, as if to remind me of the task at hand, came The 1812 Overture. It must have been the day to play Tchaikovsky’s greatest hits. The knocks and bangs of the MRI fit nicely with the cannon shots in the music.

But there was no music during the biopsy, and when I sat up at the end, it was mildly disconcerting to see a puddle of my own blood on the tray below where my breast had been.  The MRI may be able to pinpoint a tiny lesion, but it can’t tell you where the nerves and blood vessels are, and these structures can become “collateral damage” during the procedure.  The 8-o’clock spot in particular kept bleeding, so the nurses applied a large compression bandage — lots of gauze and adhesive tape — that instantly doubled my breast size.

Frankly, size can matter, but bigger is not better.

While they were applying the bandage, Dr. B came back in to speak with me, and I asked him the question I’m sure every doc hates to hear:  “What do you think it might be?”

Without test results in hand, it’s almost unfair for a patient to try to pin a physician down to a diagnosis.

Dr. B is a soft-spoken man with the delicate lilt of a North Carolina accent who raises llamas in his off hours. He has done 4 of the 5 biopsies I’ve had. If things keep on as they have, we will become good friends. As he put it, MRIs light up “everything and its dog,” and produce a fair number of false positive results, which is one of the reasons insurance companies don’t like to cover them for people like me (not to mention they’re much more expensive than mammograms).

Based on what he saw on the images, he guessed that the enhanced areas were not likely to be trouble, but we couldn’t be sure until the pathology report came back. Some of what appeared on the images had been apparent back in January and could be attributed to hormonal changes, but now that I’ve been forced into menopause by the chemotherapy, the doctors figured those changes should have disappeared.

Well, y’know, I can be a little slow sometimes.

The technician who runs the MRI told me they do about 5 stereotactic breast biopsies a day, largely for people like me with dense tissue. Numbers like these (25 a week, more than 1200 a year) for tests that produce many false positives are as disturbing as the false negatives of mammograms. Clearly, we need more accurate methods of diagnosis.

Of Hummingbirds and Rollerblades

In this post, a collection of items related to my journey, I begin by marking a sad ending.

Last week, as my son and I sat outside absorbing some long overdue sunshine on a quiet summer afternoon, we noticed something under one of the deck chairs — a small, still, feathered body lying limp in the shade of the chair. Without needing to look closely, we knew instantly what it was.  The hummingbird must have collided with a plexiglass panel on the deck. With great sadness, we placed the tender bird in the grave my son dug near some flowers in the yard, and he suitably marked the spot with a declaration of truth.  Here, indeed, lies a hummingbird, one of the companions of my year’s experience.

In my e-mail last week, I received a link from a friend. You know those links, the ones designed to get you to sign a petition about a particular political issue. There are too many of these petitions to keep track of, and you can never be sure whether  the petition arrives at its destination. This link, however, connects to a petition to prevent what’s being called “drive-thru mastectomies.”  In the constant battle between health care providers and insurance companies (which will certainly not end despite the new federal legislation), the insurance companies are wanting to shorten the time a woman is allowed a hospital stay after a mastectomy to 48 hours. Now anyone who has undergone major surgery of any kind, not just mastectomies, knows that it is beyond ridiculous to expect patients to be ready to go home in such a short time. I signed the petition, hoping never to have to fight that battle myself.  If you’d like to sign, you can find the petition here:

http://www.mylifetime.com/my-lifetime-commitment/breast-cancer/petition/breast-cancer-petition?q=my-lifetime-commitment/breast-cancer/petition/breast-cancer-petition

If you’d like to verify the petition or read the history of the legislation behind it, which has been stuck in committee in Congress for years, you can go to Snopes.com: http://www.snopes.com/politics/medical/mastectomy.asp

If you’re not familiar with Snopes, you should be. It’s the best site to fact-check the various e-mail petitions, chain letters, and urban myths and legends that circulate in cyberspace. (The name of the site comes indirectly from a family of characters in William Faulkner’s novels. If you know those characters, you know the irony of the name for the site. The Snopes’ would never be clever enough to think up such a service. In fact, they’d likely contribute to the legends found there.)

Last week also brought a few spots of humor.  A woman in the U.K. sent me the link to her blog about navigating chemotherapy with style and humor.  You can find her here: http://glamotherapy.wordpress.com/

And I credit my brother for sending me this link, which is too good to save for its corresponding holiday:

The Dad Life: http://www.youtube.com/watch?v=DOKuSQIJlog&feature=email

And here, for the moms, is the companion piece:  http://www.youtube.com/watch?v=80olbDws8r0&feature=related

At the ending of this post, I’d like to mark a couple of beginnings. First is a nod to Western Washington Oncology, the center where I have undergone treatment.  The staff and physicians at this center are the ones who saw me through chemotherapy and radiation and connected me with all those supportive ancillary services — massage and Reiki, acupuncture, naturopathy, yoga for survivors, and a counsellor , all under one roof, — which have made the burden of treatment easier to bear. As of next month, patients who are newly diagnosed with cancer can have an initial meeting with their entire medical team and support staff, which includes a patient navigator to shepherd them through the overwhelming and complex maze of cancer treatment.  My conversations with friends from other parts of the country indicate that such an approach is not common. So here’s to a new way of helping patients at perhaps their greatest moment of need.

And finally, with the return of summer and my strength, I have begun again to don my rollerblades.  Here’s to many days of  zipping ‘round parking lots in the sun.