A pause before switching treatments

Back when I was a new mom, I remember having a conversation with my husband’s grandmother about the days of yore, when her firstborn was just a baby.  She recalled how Georgie liked to suck his thumb, which was considered the lowest of socially unacceptable behaviors in her day.  She knew she needed to put an end to this bad habit, and pronto.  The popular fix for thumb-sucking, back in 1927?  Metal mittens.  Metal mittens!  Which kept Georgie’s digits out of his mouth, but also kept my future father-in-law from touching anything with his hands, from figuring out how his fingers worked, from crawling, from who knows what else?  And yet, our matriarch harbored no qualms.  “Oh, Georgie loved banging those metal mittens together.  He made quite a little racket!” she told me, smiling at the memory.

That story always made me wonder what I was doing that would go down as crazy  parenting in retrospect.  Ferberizing, hmm…would that make me seem like a nutty mother of the 1990s?  Truth be told, I was never good at leaving a crying child in a crib, but I did give my little ones plenty of opportunities to fall asleep on their own, without counting on me to be their transitional object.  Probably my most flagrantly bad parenting choice was ignoring the just-gaining-traction evidence that a backward facing infant carseat in the front passenger side was a recipe for disaster.  But then, I also remember pulling over to retrieve a pacifier from the back seat floor, and forgetting shift into park, and having the car start to roll away, with me outside and my second-born encased within.  Keeping the baby and binkie within easy reach seemed like a safer tradeoff. I assured myself that whatever I was doing, it had to be less risky than my own early car-riding days, rolling around in the way-back of our family station wagons, breathing my mom’s second-hand cigarette smoke, and getting squished against the wheel well as we banked around the curves.

Lately I’ve having those same sorts of thoughts about my cancer treatment—thoughts around which elements of my current regime will seem utterly barbaric, a few years down the road. What am I doing in the name of modern medicine that will harken trips to the barber to get a tooth pulled, or applying leeches to cure the grippe?  As I read about the future of switching the DNA makeup of cells, turning on and off genetic markers, and the discovery of methods for starving malignant tumors without damaging healthy tissue, I can only wonder—how many years too soon have I shown up for this party?  How long before there will be cures that are matched and coded, to the slay the cancer and save the patient, simultaneously?  Because the truth of the matter is that getting sliced open, and poisoned, and nuked…well, it all seems a bit old school, not much evolved from the treatments my younger sister got, thirty years ago.  Okay, tweaked for sure, less lethal and with far fewer side effects, but still.

I know I’m being a bit of a crybaby here.  What I’ve been through so far was a four-dose chemo cakewalk, spread out over two and a half months.  I never threw up.  I never even got a tummy ache.  Worst problems I’ve encountered, beyond a general weariness, have been metallic mouth, a twitchy eyelid, and tingling fingers and toes.  Not exactly lethal concerns.   My sister had chemo—deadly doses of which could have knocked out an elephant—every single Monday, for six months.  She had nausea, mouth sores, complete hair loss (I’m still sporting my comb-over, she even lost her eyelashes) and horrible downward spikes in her white blood counts.  The cure could easily have killed her.  It was a miracle that she withstood it, and a gift, that she lived as long as she did. It may have been barbaric, but it worked.

So, I’m working on the premise that what I’m going through is measured and reasonable.  It’s the best plan available, given the imperfect nature of the information we have to go on.  Adding chemo to my treatment plan would have been a best guess just a few years ago; today it’s at least a more carefully considered result of genetic testing, which revealed some evidence around whether what I’ve got would respond to the wonders of medical oncology.  That said, my results were in the gray zone (might help, can’t be ruled out…) of the current oncotype testing.  I’m told that in another year or so, that test will be more refined, with less gray space to fall into in the middle range.  Again…too early to this party.

That’s the thing.  Not only do none of us choose to show up at this shindig, we don’t get to decide when we start the do-si-do of treatment.  Having arrived in the here and now, I count myself lucky on several counts.  We found it early.  I have good insurance.  My kids are in college, not looking for rides to baseball practice or help with homework or sandwiches with the crusts cut off.  My husband, bless him, is a hero at bringing home takeout meals and eating leftovers and emptying the dishwasher without being asked.   My job right now is to heal myself.   Do some reading, pull off the occasional writing project, divvy up the family Red Sox tickets, weigh in on my beloved’s course description draft, keep some bills paid, check in on some family members, keep a couple of charitable efforts afloat.  The jobs I have, beyond getting better, are mostly a pleasant distraction from the job this blog is about.

Still, I’m hoping that before too long, what I’ve been through will be not just in my rearview mirror, but in everyone’s.  Like iron lungs and chicken pox, slide rules and busy signals.  All the way into the way-back machine, along with those horrid metal mittens.

Advertisements

Random observations

I’m feeling like subjects and verbs and paragraphs might be a bit beyond me right now.  Yesterday was my last chemo, huzzah! And all is well. My blood work is fabulous, right up there with what it would look like if I hadn’t been streaming toxic substances into my system for the past ten weeks.  Everyone on my team stopped in for high fives (metaphorically; hard to do with IV’s and tubes) and to deliver cautions about the fact that while this phase is technically in the rear view mirror, its after-effects will hang around for awhile, more adamantly than in the earlier rounds.  So, unlike last time, I’m taking my wise counselors at their word, and I promise not to overdue.  I’ll be giving in to the weariness, napping on a dime, sliding into the tub for the most intensive multi-tasking of the day (resting, meditating, soaking my sore heel—all critically important activities!) and letting things slide…that’s my current MO.

So, lacking the wherewithal to come up with a worthy blog post topic, here’s some random things that have been swimming around in my head, that I’ve been trying to remember to put in a post someplace.  For those of you who read the Globe sports pages, this is the equivalent of one of Dan Shaughnessy’s “Did you ever wonder about…?” columns, where he had a word count to fill and no particular subject to fill it with.  Here you go:

In the department of curious upsides to my medical condition, here’s a few I hadn’t counted upon:

I haven’t had to shave my legs in two months.  Bliss.

I don’t have to wash my hair every day!  Seriously—I think the last time I went more than 48 hours without shampoo, other than when my beloved and I were on safari in Kenya, pre-kids, was back in junior high.  That was almost 40 years ago!

And this one is just pure delight: I have parking karma like nobody’s business these days.  Seriously, I need a spot, it magically appears.  I’m talking parking spots right outside my guy Lenny’s hair salon, and the solitary 15 minute parking spot by the post office. A spot at the grocery store at noon on a Saturday, when everyone’s circling around, hoping to get lucky.  Oh, I need a spot?  Bingo, there it is!

Best of all was the one I snagged when I drove to Sunday River on a complete whim, mid-day, to see my big guy’s second run of his last college giant slalom.  I hadn’t intended to go, I was on my way to NH, but when I checked Live Timing (oh, the wonders of the internet) and saw that he’d had a far above average first run, well then…time to re-jigger my destination.  Only problem was that it was school vacation week, and thought of what I would run into was beyond daunting.  Oh, well, I figured, just go and see what happens.

What happened was that I passed at least a half-mile of cars abandoned along the access road, whose drivers figured that the lots up above were all full.  That just wouldn’t do.  I kept on heading up the hill, knowing I could pretend that I was just dropping off or picking up, trolling all the while for a spot with my name on it.  Sure enough, way up high, in the lots that were filled with college vans by 7:45AM, there it was: my spot.  At 12:45PM.  Just another little parking miracle.  I got there in time to buy a half-day ticket and take three runs before it was even time to be the mom at the finish corral.  On a beautiful blue sky day!

I also have good screech owl karma these days, but truth be told, that’s a bit like shooting fish in a barrel at Fresh Pond.  You just have to know which hole in which tree to look up and into.  She’s there, practically every time I look.  Makes my day, every time.

Confession: we’ve had more snow since that last post, and I will admit that even I am getting weary of the weather.  Mostly because it hasn’t been turning back to spring quickly enough for my taste.  Gray, more flakes, freezing pavement overnight.  I slipped and fell on my butt yesterday, and damned the current conditions along with everyone else.   I like my spring storms followed by lovely sunshine and full tilt meltdowns.

Department of minor miracles: one of my freshman college roommates, who is a senior editor for the Washington Independent Review of Books, convinced me to write a review for a novel that’s coming out soon, by a guy who was a resident tutor on our old turf.  I completely have no memory of the author, but his book, titled Harvard Square, was an amusing trip down memory lane.  As you might guess from the title, it’s all about my adopted hometown, which happens to begin at my own undergrad starting point.  His version of those years differs from mine, in that he was a foreigner longing for some connectivity to his life before grad school.  I don’t think he could ever imagine how foreign I also felt, coming from northern New England, not knowing what AP stood for, never having eaten a bagel or written a paper with footnotes.  Doesn’t take much for any institution to make any student feel like a fish out of water, is my take, but that’s not what I wrote.  Will keep you posted on when my review might pop up on the website.

Weight gain.  How is it that one can gain weight during chemo?  Well, I guess if the meds are good enough to keep you from getting nauseous, and the steroids are sort of designed to keep the weight on, and if you’re not getting much exercise, and if you like dark chocolate…well.  I’ll worry about that next week.

Hair: still thinning, but not so fast as before.  Waiting to see what this final blow of chemicals does on that front.  Am hoping to get away with the Donald Trump look for as long as possible.  I have a great deal of empathy for guys with comb-overs these days, when I’m out in the wind.  Oh, yeah, that little bald spot…which in my case isn’t on top of my head, but on my right side, probably because that’s the side I sleep on mostly.  I’m getting good at rearranging my coverage to hit that spot.  Will need to be thinking sun protection pretty soon…

That’s all for now.  Thanks for checking in.

spring is in the air

IMG-20130312-00577

Spring has been trying to show up, here in my hometown.  It made a bit of an appearance, which I noticed back on March 1st  most specifically.  It was as if  Mother Nature announced, “Hey, the calendar page has been turned, get a move on!”  I saw my first snowdrops that day, and heard the first red-winged blackbirds.  Spring had officially arrived, it would seem.

 

Except that it hadn’t.  We got another one of those snowstorms a week later, the ones we’ve been having pretty much every Saturday/Sunday for over a month.  This one was curiously under-hyped, since it was supposed to shift south or go out to sea, I forget which, and the temperature was supposed to stay above the freezing mark.  Until it didn’t, and until we got another foot of wet, white snow.

 

Here’s the thing: I love March snowstorms.  Always have.  Everyone around me complains, like it’s the worst thing that could be visited upon us at the end of a long winter, but to me March storms are glorious.  They are so lovely, and they melt so obligingly, before they even have a chance to turn gray.  Those snowdrops, the ones on the south side of the hill, were revealed once again, in short order.  I saw them again, just the other day.

 

Here’s another thing: I’ve never really loved spring.  To me it’s always the end of ski season, which I adore, and the beginning of mud season, which is just ugly. That, plus I hate having to shed the layers I like—turtlenecks, for one, and my new favorite quilted jackets, thin and brilliant and lovely to have in layers under my raincoat or parka, or over my pjs.  I despise being hot and sticky, and there’s always that day, sometime in April, when the temperatures soar and there’s no shade, anywhere, with no leaves out on the trees.  I hate that, entirely.  Hate sleeveless shirts.  Hate feeling sweaty under the covers.  I like it brisk.

 

That said, I get it, that spring is all about rebirth.  Easter would have to be scheduled for spring, if the calendar didn’t already oblige it to come when the daffodils emerge.  And I get it, how people who’ve been under the weather, literally and figuratively, ache for daylight that lasts beyond 4PM (okay, confession, I like that too) and warmth on one’s skin, direct from the sun.  I get it, that it feels like the beginning of a new year, a new start.  I can’t help it that to me, September will always be when new years truly begin, complete with new school shoes and knee socks with no holes in the heels, and newly sharpened pencils and holidays around the corner that involve stuffing and pecan pie.  What can I say?  I’ve liked both school and winter from the get-go.  I was always ready for summer to wind down and cool off.

 

But this year, the notion of spring, of new starts, of rebirths, has extra meaning.  I keep flipping the calendar to April and May, looking to see when chemo ends, when radiation starts, when it will all be over.  I don’t know exactly how long I have to wait before the splotchy spots on my head start sprouting hair again, but I’m hoping it will be before May.  I’ve been zeroing in on that first weekend in June, when Ian graduates from college, as my official It’s All In My Rear-View Mirror coming out event.  I may be short of hair, but I will be done with all but the treatment that comes in pill form, some cocktail of hormone therapy that I’ll be happy to trade for what I’ve got going on these days.

 

So, spring, and its lovely harbingers of better times to come, are holding some sway with me these days.  Here are but a few of the things that have made me happy, courtesy of the changing of the seasons:

IMG-20130312-00568

There they are, those little beauties.

IMG-20130312-00575

Thank you, JZ, for educating me about witch hazel.  Smells like mimeograph sheets, remember that?

IMG-20130311-00566

Pussywillows. Who doesn’t love pussywillows?

IMG-20130313-00584

The slowest amaryllis in the land.  Potted in December, blooming in March.

IMG-20130314-00586

Okay, okay, here’s a sign of spring that I can completely get my head around. Today was Fever Pitch day.  When a whole season’s worth of Red Sox tickets arrive, all shiny and new.  Hope springs eternal. Play ball!

The Week that Wasn’t

I’ve been reminded this past week of my orthopedic surgeon’s parting advice, three decades and three knee procedures ago: The Enemy of Good is More. Which, back when I was recovering from ACL reconstruction, meant, simply enough: don’t try to be a physical therapy hero. If I was told to do three sets of ten leg lifts, it didn’t mean do six sets of 30 for extra credit. Doesn’t work that way. More is usually too much.

It was a hard lesson for a once-serious athlete to accept. And yet, a useful life lesson.
She says, as if she keeps this sage tidbit in the forefront of her brain at all times. Sure, I like to think I’m older and wiser these days, having lived long enough to take these pearls of wisdom to heart without having to be reminded. And yet, here I am, on the backside of a week that probably wouldn’t have been stellar under any circumstances, but was definitely made worse by my own bull-headedness. The enemy of good? Too much. That’s what I did.

Let’s see, where did it all begin? Chemo #3 last Wednesday, nothing odd to report. Okay, there was the birth of that little chest cold, but if Nurse Kathy didn’t notice, it probably doesn’t matter, right? Come Thursday, I was still in that steroid-induced protective zone. All good. Nice morning at the MFA, admiring Cezanne and Gauguin, taking in a lecture on early French photography. I got my day-after shot to pump up the white blood cell count that afternoon, and when asked how I tolerated it last time, thumbs up all around. Friday, woke up feeling grand. The sky was blue, and my walking shoes were at the ready. Drove to Fresh Pond, confident that two times around the reservoir at a jaunty clip would be SO much more an accomplishment than one measily lap. It felt like weeks had passed since I’d gotten any decent amount of exercise. Plus it was a lovely day. Plus the brisk air felt good on my face and in my ever-thinning hair. Plus the resident Eastern screech owl was in her hole, and all was well with the world. Time to seize the day!

It wasn’t until I headed back to my car, zig-zagging up the path through the tall pine trees towards Huron Avenue, that the weariness set in. Honestly, the hillside connector from the reservoir to the street could not be more than forty vertical feet, but with every uphill step, I felt more feeble. Listen to your body, my brain might have said right about then. But there was still a grocery shop to do, then a friend to meet for a late lunch. Need milk, gotta eat, maybe I can squeeze in a little nap somewhere along the way.

I did lie down for about a half hour later on, then checked the MBTA schedule to figure out when one of the buses that obligingly rambles right by my house would be coming along. My objective: a women’s college hockey game across the river. ECAC quarterfinals, my alma mater vs. my sweetie’s. We’ve got a history of meeting up on Fridays at the hockey rink whenever the women are playing; he walks over from the B-school when he’s done with his day, and I get to enjoy these amazing gals on skates while I wait for our weekend to officially begin.

Aside: I cannot explain my affinity for college women’s hockey, beyond my basic appreciation for how good they are at what they do, how skilled and mindful their execution is, and how wistfully brief their college hockey lives are. While there are always the rare exceptions that get to compete in the Olympics and beyond after they graduate, for most, the games I watch are the end of a long road. And if they’re like my older son and his ski racing career, they’ve not only been at this for a very, very long time, they don’t always see the end coming until it’s practically upon them. Life beyond hockey is unknowable. Senior Night is something that happens to their elder teammates, not them. Until one night, it’s their mothers and fathers wielding cellphone cameras and videocams from the stands, and they’re the ones being handed bouquets of roses at their last regular season game on home ice. To be so very good at something, to have worked so hard and made time between classes and exams to commit to this sport for four intense years, then have that all go away…every year, I find it amazing and touching and a little bit heartbreaking. I also find it unfathomable, that their games are so pitifully attended. Which is partly why I go.

So, the bus comes, I get a seat, I close my eyes, and am suddenly aware of how very tired I am. I make it to hockey, catch up with my honey, cheer my gals on to a 3-0 victory, walk back over the bridge to dinner at our favorite bar, where our favorite barkeep is on duty and knows my favorite drink. “Hmm, do your docs say anything about alcohol?” my beloved asks, then answers the question for me. Whatever. It’s the weekend. I’ll be in bed by 9. Probably a good thing, to knock myself a little bit silly and get a decent night’s sleep.

Saturday, Sunday, Monday, Tuesday: I am a congested, cranky, weary excuse for a human being. My joints ache. My head aches. My chest wheezes, my nose runs. I am exhausted, just creeping up and down the stairs. I can’t concentrate enough to read, I can’t get comfortable, I can’t sleep. My mouth has that extra hot burnt cheese pizza sensation, which renders lots of flavors unrecognizable, metallic. My ankles are swollen. My fingers and feet are tingly. I am, in short, a mess.

Okay. Much of this would have been visited upon me, even if I hadn’t gone two laps, even if I hadn’t sat in a chilly arena, even if I hadn’t had that sparkling crimson cocktail (champagne, Cointreau and pomegranate juice, in case you’re wondering.) It’s hard to believe that getting more sleep earlier on would have improved anything, since I spent so much time checking the clock in the middle of the night, only to discover that just 15 minutes had passed since my last look. I was told up front that the effects of chemo are cumulative, that one might breeze through the first and couple and find the last a bit tougher going. I selectively forgot that, and took my first and second round byes from the ill effects as a testament to my personal constitution. Turns out, it was all going according to a predictable plan.

So, here I am, feeling much better, thank you. The return of winter weather has been an obstacle to doing laps these days (a great athletic equalizer—the snowy windy rainout!), which is probably a good thing. My list of favorite things this week includes generic sneeze-y drippy cough-y so you can sleep meds, and a variety of Puffs tissues that not only has built-in lotion, but also smells like the old Vick’s vap-o-rub of my youth. Genius, whoever thought that one up.

So, one lousy week down, two to go before the last of the chemos. I can’t wait. And I vow to be more mindful of how I’m actually feeling, next round.