You Look MAHvellous

The rains have set in, but still two hummingbirds come to dine, and these two actually shared the feeder rather than picking a fight with each other. (Hummingbirds are beautiful, but they are not kind to one another.) These are Anna’s hummingbirds — a male with the brilliant red head, whom we named Robin Hood, and a more modest-colored female.  Anna’s don’t necessarily migrate for the winter, and I’m looking forward to keeping their company. The other four that appeared over the summer, Fred and his compatriots, are Rufous hummingbirds, which fly to warmer places to wait out this dreariness.

The Popsicle Report:  Today’s flavor: chocolate pudding. Those same aged tubes I saw last week are still there.  So I opted for the pudding in the refrigerator.

Leaves still cling to the huge tree outside the infusion center.  Today was infusion #5 of the Taxol — 7 more to complete the total 24 weeks of chemotherapy.  The process was almost too routine.  As I drove over to the center, I felt as if I were going off to work, the way the kids go off to school.  Blood draw, wait for results (white count 13, 2 points above the normal range, with two home injections of the Neupogen last week), drink my green tea. It’s as John O’Donohue remarks in his short essay “The Question Holds the Lantern”: “Eventually, even the strangest things become absorbed into the routine of the daily mind with its steady geographies of endurance, anxiety, and contentment.” The essay describes exquisitely the transformation a person goes through when confronted with a crisis. You can find it on O’Donohue’s beautiful website:

And then, as often happens, I recall why I’m there in the Barcalounger listening to the beeping of IV machines. Their coded alarms distinctly remind me of my teenage days spent working at McDonald’s, learning the particular squawks of the french fry vat, the bun toaster and the fish fryer. I instantly try to shut out the thought of why I’m sitting there by distracting myself.  Robert Schimmel comments on this need for distraction in his book, “Cancer on $5 a Day.” That need likely applies to all of us when confronted with something larger than we are.  When you’re on a course not of your choosing with no alternative, distraction is essential.

So today’s selections from my iPod ranged from Sting, back when he was with The Police, to Tony Bennett, to old Elton John and Paul Simon (always a favorite), to James Taylor’s “Fire and Rain” with that gorgeous cello line, to Aaron Copland’s “Billy the Kid” and a little “Bungle in the Jungle” from Jethro Tull.

No new or different symptoms from the Taxol so far, though it does seem to be aggravating the area under my left arm that was affected by surgery — an area of numb hardness that increases and decreases based on my level of activity.  One therapist thinks it’s the effect of Taxol on the nervous system.  Perhaps I should immerse this portion of my body in the ice-water bath during infusion, but I don’t think the infusion staff would approve of that.

This morning, as I was getting ready for the day, I ran a comb over my head, just to reminisce.  I could almost feel the weight and pull of my hair as it used to be, even though what’s there now is just some white fuzz.  But at least the fuzz blows in the breeze, as I discovered while zipping around the house with a bare head. (Despite what the numbers say about my low red cell count, my energy level is better. Amazing how the body adapts.)

I’ve gotten quite used to the head coverings, and have quite a collection of them now. Hats (both practical and silly), scarves, and longer pieces I can wrap into turbans. Sometimes I forget I have one on.  If I’m in a place where I’m anonymous, the headcovering poses no problem.  Downtown, many people look a lot stranger than I do in my headwrap. I don’t have any piercings or tattoos, so even a turban looks rather conservative. Someone told me that I could even wear the green metallic wig my mother sent in certain parts of town and actually get hit on.

But a problem arises when I’m in smaller, familiar settings.  A few weeks ago, during the handshake of peace during church service, an older gentleman shook my hand in the regular fashion, saying “peace be with you.”  And then, for a fraction of a second, he put his other hand on top of mine and said, “God bless you.”  And suddenly, I was jerked back to my reality and had trouble maintaining my composure.  I know he meant well, but for just a few moments I had forgotten that reality.  My headcovering gave me away.

And that’s one of the side effects they can’t tell you about at the doc’s office — the response you may get from others.  Some people never notice, some do but don’t know what to say, some jump in full force, change their tone of voice, and look at you sadly.  Some wait for you to bring up the topic because they’re not sure if you want to talk about it.  Interactions can turn into awkward dances, with neither of us in the dance knowing which way to step for fear of offense.

A comment I hear often is “You look good.”  These words are offered with the best of intentions, and I do appreciate them (though I was never one to worry too much about how I looked — as my mother can attest). But then I find myself wondering — did I *not* look good before? A couple people have asked me what might be the appropriate way to respond.  I can’t speak for anyone else (cancer and chemotherapy are such vastly different experiences for each person), but consider this: If you want to comment on my appearance, don’t just tell me I look good.  Take a page from Billy Crystal and say “You look MAAHH-vellous!”

No Popsicle Today

The day is full of nines today.  Yesterday’s paper had an article about the auspiciousness of the number 9. In some countries, like China, it’s considered lucky.  I must have been under the Japanese influence of the number, though, which isn’t so lucky.

No popsicle report.
No popsicle.
And no infusion either.

The day was rather hectic, and the appointment rather later than usual, at 1:30.  (I like getting the infusions in the morning, so I can get the most of that steroid effect!) I felt a sense of dread as I drove to the oncology center, but couldn’t figure specifically why.  I was thinking about the last blood count and hoping the red cells hadn’t declined further. The fatigue hasn’t really increased, but I can’t take stairs two-at-a-time, as is my usual habit (not to prove anything but because I’m usually in a hurry), and when I walk up the hill that is our driveway to pick up the mail, I have to stop halfway because the strength in my legs just isn’t there.

So there I sat in the vinyl Barcalounger in the infusion center, wondering about the popsicle du jour (I admit I peeked in the freezer before I sat down to see if I could spot any blueberry lemon, but no luckl).  The nurse drew the blood sample, and as I waited for results, I looked around and noticed a woman across the room carrying the same book I’m reading currently (Harry Potter #7 — the last in the series, in which Harry finally kills his evil nemesis, Voldemort. I can identify with his struggle.).  When the nurse came back, she said we would not be going ahead with the infusion because the WHITE cell count was down. Last week it was 4.5, the low end of the the normal range for females.  Yesterday it was 1.7, a significant drop that put me below the threshold of 2.0 to go ahead with the infusion.

I can’t puzzle this out.  The 2 Neupogen shots I took at first doubled the white cells and the next two increased them even further.  Last week, I back off to one shot, and the white cells plummet and the chemo has to be delayed.  It was scary, and disappointing. (How strange to be disappointed NOT to be getting the chemicals.)  I had counted off the sessions on the calendar and found that, if everything goes according to schedule, I’d finish chemo a few days before Christmas.

I’m waiting now for a callback from my oncologist, whom I hope can enlighten me about this particular part of the roller coaster ride.  My husband gave me a Neupogen shot as soon as I got home yesterday. As he noted, this was the first time he hadn’t been with me for the session (he was busy getting the kids to their respective day-before-school-starts activities). So perhaps, besides his many other roles, he’s also my good luck charm.

The good news is that my weight is back up to triple digits. Some good pasta, trail mix, and dark chocolate helped.  I couldn’t bring myself to chug the olive oil, but my daughter’s white-chocolate-apricot-oatmeal cookies are, I believe, a suitable substitute.  The kids started back to school today — fortunately, neither has a big transition this year — and I got to soak up some solitude this afternoon.  And though I didn’t get a popsicle, I did manage to snag a tub of chocolate pudding while I waited at the infusion center.

Another book I read this week was Robert Schimmel’s “Cancer on $5 a Day.” That’s a misleading title since he doesn’t really talk about cost, but he does describe his brutal experience going through chemotherapy for non-Hodgkins’ lymphoma.  I can’t recall how I came across the book, and I’d never heard of the author before. He’s a stand-up comic, a friend of Howard Stern, and his material can be pretty raw, but his book was worth reading for the humorous (and heart-breaking) account of his experience. One of the scenes he describes is taking half an hour to shuffle 30 yards out to his mailbox only to find a renewal notice for his driver’s license, and his subsequent conversation with the officer at the DMV about why he really can’t come down to have his picture taken.

And the lightbulb went off in my bald head.
I checked my license.
It expires next month.
Rumor has it that the County has closed two of the three DMV offices due to budget cuts.  I guess this is my next big adventure.