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 Poet Is Wrong; June Was the Cruelest Month

Just talked to the surgeon about getting this drain out of my side.  The surgery site is still draining as before, but we need to get the chemo started.  So the plan for now is to remove the drain next Monday, and also start the chemo on Monday (July 6). Gee, what a day to look forward to!

I met with the oncologist, Dr. L, yesterday.  He can work with the doctor we saw in Seattle to do either the once-a-week treatment (lower dose) or every-2-week-treatment.  The difference in the total amount of chemo is slight, and no one can tell me what my own experience with this will be, so it’s up to me to choose which route to go.  The doc in Seattle seems to think the once-a-week is better tolerated, but Dr. L pointed out that it means twice as many trips (and the psychological preparation needed for those), and that protocol hasn’t been tested in a clinical trial to compare it to the 2-week regimen.  So, I get to pick, but have no idea what will be better, given that I have no clue what the effects will be.

I find it strangely reassuring to talk with the medical people, because they talk about this like it is a treatable illness — not the big black hole that I fear when I’m lying awake at 3 a.m.  Yes, there is life after, and even during, chemo.  (The nurse told me a story of a woman who, while on chemo, went to a tanning bed to prepare for a trip to Mexico and got badly sunburned.  OK, I know enough to stay away from tanning beds, but I was delighted to think that trips to exotic places may be possible during this time.  My husband does keep asking me where I want to go!)  And yes, there is life after, and even with cancer.

Now ya’ll just have to keep reminding me of that when things get rough.

The good news is that the bone scan, CT of the abdomen/chest, and the PET scan were all negative — meaning there’s no evidence of spread beyond the nodes, at least not that they can see.  (Microscopic spread can’t really be tracked in any way.) OTOH, I was relying on those mammograms too, so I don’t know how much stock to put in these findings.  Still, I’m glad for that news.  The surgeon was glad too, since, as he put it, it was about time I got some good news.  I told him that I was starting to think that maybe this is payback for something I did in a previous life.  He asked, “Well, was it?”  I said, “I can’t recall!”

Maybe I should call on Shirley McLaine to help me channel previous lives???