From the Diagnosis to Frankenstein

Grey, dreary days continue, and a wind storm in the night knocked out our power for most of today. (We’ve become intimately acquainted with the workings of a generator since we moved here.) But the horses are saying spring is coming soon.  My daughter comes home covered in horse hair on the days she goes to the barn.  They’re thinking they don’t need their winter coats much longer.  My dog is still pretty woolly.  He apparently hasn’t gotten the message yet.

The hummingbirds continue to visit, hungry as ever.  A couple of people pointed me to the special program on hummers that aired on PBS recently.  If, like me, you missed it, you can find it here:

I’m posting the link in honor of their companionship.

Last week, when I was talking with  the radiologist after the mammogram, despite his knowledge that they’re not reliable, he said he tells his wife and daughters to get their mammograms every year. Then he said to me casually,  “Tell your daughter.”

Ah yes, my daughter.  My situation means that she (and my sisters and mother) now have a family history, one of those factors on the list of risks.  And I have to tell her this.

Some day.

But not now.

She’s just turned 13.  She shouldn’t have to think about this risk women face when she’s just getting started.  I know what they say about life — but there are times when all I can think is, this is not fair.  Saying that doesn’t change anything, but it does at least acknowledge the fact.  And acknowledging is often just as important as learning to deal with it.

I’ve had a couple conversations with friends about the mental aspect of dealing with this disease.  I can’t know now how cancer is changing me, but I  do know it’s forced (and ironically helped me develop) a certain mental discipline.  At first, the shock of the news was — to understate it — overwhelming.  I was sitting in the middle of a haircut at the salon when my cell phone rang and I saw that it was someone calling from a hospital number.  I figured it was someone from HR, calling back to answer a question I’d called about, so I let the call go to voicemail.  When the call came again, I knew it couldn’t be good.  I’d just had the biopsy the day before and thought it would be several days before results were in. But my internist was diligent in pushing for information and when I answered the phone, she said in a measured tone, “When can you come in today? We need to talk.”

And you know that statement never brings good news.

While the doc talked with my husband and me about the situation, my head began to buzz and all I could think was, “No, this can’t be.  It makes no sense.”  And that quintessential question:  Why me?

At that point, my brain when into automatic mode, taking care of the business of decisions, keeping the homelife running, preparing for surgery.  So many details, no time to ponder.  The next and equally frightening blow came in the surgeon’s office at the follow-up visit.  The doc didn’t yet have results from the pathologist and left the room to make yet another phone call to press him for the report.  But he was gone a long time.  I sat on the end of the exam table thinking, “This is taking too long.  That can’t be good.”  And it wasn’t.  What he thought before surgery was a stage I tumor, and the radiation oncologist thought was a stage II, given that there was an enlarged node under my left arm, turned out to be stage III because of the number of nodes involved. In an instant, I was standing on the brink of an abyss. I sat in that white, cold room after the surgeon left wondering “How can this be?”

And I began to yawn.  No tears or screams. Large involuntary stretches of the jaw.  Over and over. At the time, I remembered reading that yawning is how a dog releases stress.   Well, in the argument over cats and dogs, I’ve always said I was a dog person.

For weeks afterward, the shock took over and, for the first time ever, my brain consciously went numb because it couldn’t fathom any more. Eventually, as I started wrestling the beast and began chemotherapy, I learned when to shut off the negative thoughts, the fear, and I would say to myself, “I’m just not going to think about that. I’m not going to go there.”  And I was surprised that I could, in fact, shut down those thoughts.  Channel-switching, I think it’s been called — the ability to willfully change your line of thinking, which I think comes easier to men than women.  (After all, it was Scarlett O’Hara, not Rhett Butler, who had to say “Tomorrow is another day.”)  Distraction helped tremendously — and kids are a marvelous distraction — but I had to be careful.  Even a silly movie would spring a moment that put me on the brink of tears.

Going to chemotherapy helped to level off the mental upheaval, even while it introduced physical problems. I knew there was a path designed to help me, and all I had to do was stay on it.  As I mentioned before, though, the mind quickly releases certain experiences, and when I went last week for a massage, which takes place in a room adjacent to the check-in desk for chemotherapy, I sat in the waiting chair, the same chair I’d sit in to be called for the infusions, and I felt awkward.  That community feeling that had developed over the 24 weeks of infusions had already evaporated and I didn’t want to be there.  I wanted the comfort of the massage, but I did NOT want to be near those pods.  And my entry into the radiologist’s office last week brought a similar feeling, as will my return for the MRI tomorrow. So I recognize there will be times when the awfulness of it all will come screaming back, but when the fear subsides,  I ask myself, “If I didn’t have cancer, what would I do today?”  And then I go ahead and do it.

And at those times I still wonder, “Why me?” I can take the long view, described by Dan Shapiro in an essay for  Dr. Shapiro is a psychologist who now heads up the Humanities Department at Penn State Medical College (imagine that, a humanities department at a medical school!) and weathered two rounds of brutal treatment for Hodgkins disease when he was in his 20s. He describes this experience in his book Mom’s Marijuana (so titled because his mother grew pot in her backyard garden specifically to help him manage the symptoms of chemotherapy). He speculates that, along with asking “why me?” we should also consider, “why not me?”  You can find his short essay here :

I know the anxiety will return again on Thursday, my first  of 33 rounds of radiation.  Every weekday for 6 and half weeks. OK, this is supposed to be easier than chemotherapy — “a picnic” according to the black-haired omen who appeared before me in that shop before New Year’s — but y’know, I’d really rather have a fine dinner served to me on china and crystal.  When it comes down to it, picnics aren’t all that comfortable.

As you  remember, I had the assessment appointment with the radiation oncologist, Dr. W, before my last infusion on New Year’s Eve.  She’s a small, very polite person, who speaks with some formality and apologizes for her cold hands, but radiates (pardon the pun) an interior warmth.   She’ll be checking in with me every week as the plan progresses, but I don’t think she’ll ever offer me any hideous paintings of dogs, free or otherwise, the way Dr. L did.  With the end of chemotherapy, we assume the cancer has been killed off. (No guarantees, but I’m happy to assume.)  The point of radiation is to treat the area where the cancer appeared to prevent recurrence.  Some people undergo radiation as part of their treatment, some don’t.  The doctor up in Seattle laid down the numbers for me this way:  for triple-negative disease, the rate of *recurrence* (which is different than the survival rate) for women undergoing only surgery is 80% over 10 years.   For those undergoing surgery, chemotherapy and radiotherapy, the rate is 50% over those same 10 years.

Some decisions are easy to make.
And I intend to be on the good side of the numbers.

I have some help in that respect from Stephen Jay Gould, the now-deceased Harvard professor of biology and geology who, facing his own diagnosis of cancer, took a close look at what all those statistics really mean, and lived to prove the points of his discussion. If you’re up for it, you can find his essay, “The Median Isn‘t the Message,” here:
He sides with Mark Twain’s comments about lies, damned lies, and statistics, and echoes Twain’s remark that rumors of his death are greatly exaggerated.

At the assessment with the radiation oncologist two weeks ago, the technician marked out the area that will be treated with radiation. Before she began, she told me what she’d be doing, putting “tattoos” to mark the boundaries on the left side of my chest so they could calculate the treatment area. (Oh boy, my first tattoo!)

First she drew dotted lines around the area with black marker, and then picked up the pointed tool to make the tattoos, half a dozen small dots on the skin.  She had told me that it would prick a little.  What she didn’t tell me is that it would feel like being poked with an ice pick and there would be blood.  By the time she’d finished,  with the scars from surgery, the black marker lines, and the smeared points of  blood from the pricks, I looked a bit like Frankenstein, only without the bolts.  The tattoos themselves are easily  mistaken for freckles, not really noticeable unless you know what you’re looking for.  They outline the area from my collarbone to my lower ribs, and my sternum to my left armpit.  The top two on my sternum were made with invisible ink for the sake of (dis)appearance, and they won’t show up  unless I’m under black light.  Can’t recall the last time I was in a place with black lights, but then I remembered that indoor golf place my son likes that is painted all in fluorescent colors and illuminated with black light.  I’m hoping he doesn’t want to have his birthday party there this year.  I can hear it now: “Your mom wears turbans AND glows in the dark!”

Although today isn’t a holiday for which there is a costume, this week’s photo collection highlights some of the headgear I could wear later in the year.  I take no credit for these adornments.  They were contributed by some of you:

For next Halloween.

A true patriot.

For when the leprechauns come out to play.

I hope I don’t scare them off.


The Wild West of Treatment

Well it’s been another wild week in west Olympia.  With the time off work and my part-time hired help, you’d think I’d have nothing but time on my hands.  Wish it were so.

This week’s infusion went ahead as scheduled, number two in the Taxol series, even though my white count has dropped again.  Down to 2.0, that pesky threshold number that can make or break the routine.  My doctor said it was OK to go ahead though, since the total count wasn’t below 2.0 and the neutrophils, the most important subset of white cells, were acceptable.  We don’t know the reason for the drop. Could be just the one injection of Neupogen last week (we were anticipating being able to back off these because the Taxol is “kinder and gentler” to bone marrow), could be still some fallout from the Adriamycin/Cytoxan.  Apparently, those drugs can have residual effects for up to 3 weeks after they’re stopped.

Which is why I can’t yet answer the question I’ve been asked: How is the new drug making me feel?  Seems I’m still in a transition phase.

As with last week, the premedication of Benadryl knocked me out and I had a nice nap during the infusion.  I can’t eat a popsicle while I sleep, but I’m still trying to figure out how to work the angles on that treat.  I didn’t put my hands on ice yet. The naturopath suggested it, the oncologist said he didn’t think it necessary, and the nurses can go either way.  So much for the idea of science being hard and fast.

Fortunately, the drowsiness from the Benadryl dissipated quicker — I’m told a body builds tolerance to it — so I got by without a nap at home.  I’m still on the steroid energy kick, which usually washes out around Thursday afternoon. Though the drugs have changed, I’m still taking about the same number of them, and will have a clearer sense in a couple weeks of exactly what’s happening.

I’ll continue with the Neupogen, hoping the white cells level off soon.  The night-time dose of Ativan seems to have lost its effect, so I’m making the switch to melatonin in search of that increasingly elusive good night’s sleep. Another side effect of the chemotherapy is instant menopause, with all its inherent, uh, charms. The most bothersome of these at the moment is the night sweats. Throw the covers off. Get cold. Drag the comforter back on.  Get hot.  Throw the covers off….  You’d think all that activity would count for aerobic exercise. I could work off any weight gain from a bedtime snack in no time at all.

But surely there are better ways to maintain weight. Can’t stay in the triple digits with all that activity.

Anyway, between the sweats and my son’s middle-of-the-night growing pains (those darn children — they GROW, and at the most inconvenient times), the steroid high and the Benadryl knockout, it does feel a bit like the Wild West in my body and soul this week.  Chemicals leave their mark on the psyche as much as they do on the body.

I continue to puzzle over how I came to be in this situation. I have few risk factors (70%of patients don’t have any of the standard factors) and no family history (only 15% of patients have one).  I’ve taken pretty good care of myself, done the exercise, eaten healthful foods, gotten the mammograms.  I think about where I’ve lived, possible chemical/carcinogen exposures. It’s a never-ending loop and I look for any truth in public information that can help me make sense of things.

Last week, I attended a dinner for breast cancer survivors (something I both dreaded and desired), and the keynote speaker addressed some of the psychological impact of this diagnosis. She said that everyone dealing with this disease tries to figure out what caused it, even though no one can ever tell you what lead to its development. There’s no direct link as there is for smoking and lung cancer.  But she said it’s a necessary part of the mental process once a patient receives the diagnosis, so at least I know my line of thought is normal, even though the search may be futile. As part of the process of making sense of things, I’m trying to dig below the surface of generic public information to find the truth as I am discovering it to be.

One publication that holds a tremendous amount of data is the annual report by the American Cancer Society (Cancer Facts and Figures) that shows in detail the cancer rates throughout the country by type of cancer, sex, age, geographic region and other details. If you’re interested, you can find it here:

There’s more information than you might want, but the map alone is worth a look.  In the section on breast cancer, I found a bit of truth that has been missing from most generic public sources on the subject: the fact that having dense breast tissue can be considered a risk factor and has a definite influence on how accurate a mammogram is.  The more I’ve thought about my situation, the more irritated I’ve become with that mantra projected at women: “Get your yearly mammogram!” as though that’s the surefire way to catch breast cancer early.

I’m guessing I’m not the only woman who’s gotten caught in that gray area where mammograms fail. It’s good to finally see science starting to register dense tissue as a risk factor, but it’s still not showing up on the information that’s disseminated to the general public. I’d like to see that change. I’d also like to see better methods for catching this disease when it really is early. If breast cancer really is present for 3, 5 or even 6 or 8 years (as Dr. Susan Love believes) before it can be detected on mammograms, there has to be a way to catch the disease sooner. Mammography is not actually a form of
early detection.

Of course something patients with any illness wonder about is whether they’re getting the best care available, and that’s true for me as well. We have done our due diligence of reading and research, getting second opinions, keeping our eyes open and, fortunately, I’ve consistently come to the conclusion that I’m in good hands of care. That feeling was enhanced by an informative article in this week’s Newsweek that researched outcomes of cancer treatment at medical centers around the country. The article helps clarify the confusion about where to go and what to expect for various treatment centers. If you’re interested, you can find that article here:

A couple people have commented to me how courageous I am, going through all this. I don’t know as that courage really has much to do with it. Yes, it’s a necessary component of the journey, but when you’re put on a sudden and serious path, and it’s the only way through the forest, the journey has less to do with courage than simply doing what has to be done. Can you call it courage when there really isn’t any other choice?