Fine thanks, and you?

As I spend time in this lovely lull between treatments (which I’m now describing as the “Make Hay While the Sun Shines” zone; I feel entirely normal, I really do!), and since I’ve reached out to my inner circle and have this blog up and running, to keep you all as much in the loop as you want, I now find myself in that curious zone of cherry-picking who else to tell about what’s going on in my life.  Or, more often, whom not to tell. 

 

And I’m ever more pleased to realize that “…Or Not…” is a viable option.  In this world of social networking and seemingly requisite over-sharing, I’m grateful that I have the choice.  With most folks in the periphery of my life, I will continue to be just me, no baggage around my descriptors.  I’ll keep being K, the clockwise Fresh Pond birder and speed walker, J’s wife, I. and E’s mom, PP overseer, fundraiser, cookie baker, Red Sox ticket manager, book group member, Starbucks regular.  No one need add “In Treatment” to the resume they keep in their heads about me, unless I decide to offer it up.

 

Most of you know about what’s up because of an email.  I think I’ve only told four or five people in person.  I have a friend that I just heard back from, who apologized for the lag time, but noted that responding to my message required a bit of extra time to describe her own situation: turns out, she’s got health demons to deal with, and like me, she is not anxious to over-share.  As she described it, having the face-to-face conversation about a bad health scenario is a little bit like being pregnant and answering the question, “What names are you thinking of if it’s a girl/boy?”  If the names you’ve got in mind aren’t in the asker’s sweet spot, you’ll know in a nanosecond.  Certain things people just can’t keep to themselves.  Even without words, their faces give them away.  (“Jedidiah, really?  And if it’s a girl?” (thinking to themselves, please say Emma…)  Same with the overly-honest answer to, “So, how are you?”   People aren’t really asking me about my last mammogram.  “Fine, thanks, and you?” is a perfectly acceptable response.  The Polite Response, one might note. 

 

Here I must confess that I am a life-long member of the avoidance and denial club.   When things get unpleasant, I’m a ducker-outer.  Back when emotions ran high between me and my mother, I’d limit my communication to postcards, the better to leave certain things unsaid.  For better or worse, my dodging and weaving felt like a decent enough coping mechanism.  Maybe wasn’t, but got us through some rough patches.

 

And so, yes, I wonder if I’m doing the same thing now.  But I don’t think so.  For every one of you who think I’m some hero for being so bold about saying what I’m going through and having this chipper outlook, please know that it’s easy to be upbeat when you haven’t suffered yet, at all.  I’m not overcoming much of anything, beyond staying on top of my intestinal cycles.  There’s a lot of Metamusil involved, which doesn’t seem like a worthy blog topic.  Truly, that’s been the most significant side effect thus far, and I honestly can’t blame it on the meds.  Same as every ache and sniffle could just as easily be the same old flu that’s bouncing around right now, not some lack of defense on the part of my over-burdened white cells.  As far as I can tell, I’ve flushed the half-life out of the toxins in my system thus far, and am ready for more.   And in the meantime, I get to ride the normal train, not the special van for the infirm.  I can even give up my seat.  I’m as healthy as the next person, with this one bit of business to attend to.  If I don’t tell people what I’m up to, I don’t get that face, the sad, shocked, not-sure-what-t-say-next one.  And I don’t have to spend five minutes saying, “But really, I’m fine.”  Better to start with “Fine, thanks, and you?”

 

Meanwhile, back to the Make Hay zone.  I do wake up feeling like knocking off projects—now, while I can, being the obvious motivation.  The same internal drive that headed me to the north to get a Christmas tree taken down before chemo started is now motivating me to bulldoze my way through the crap in my away-at-college boys’ rooms, get the car serviced, call someone about the furnace, bake a batch of cookies and drive up north, just for the fun of standing outside the life sciences building while classes change, and trading gingersnaps for a quick hug with my older son.  That silly boondoggle (those cookies have a big carbon footprint, I’m embarrassed to say) serendipitously turned into a delightful road trip with my sister-in-law, giving us time to talk about things we’ve been meaning to talk about for weeks.  And by delightful kismet, we both got to be there for a cookie-and-hug distribution to another one of our nephews, along with my big guy.    “Oh, you empty nesters,” my son noted.  Well, yes.  And at least one woman on a mission to do what I can, because I can.   

 

Next Wednesday is Chemo#2 day.  I’ve got more projects to attend to, between then and now.  One of them might even be to get some Christmas cards-turned-Valentine’s cards in the mail.  Keep an eye out!

 

Hair Today…

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Here’s a story that turns into a curious preamble.  Back in December, when my extended family was gathered around our dinner table, I posed this query: “What’s your favorite holiday memory of all time?”

There was the classic tale of sneaking down at 4AM to see what Santa had brought.  There were romantic memories, and a remembrance of a snow fort that got built on foggy Christmas day and lasted until April.  What I shared was the story of the Christmas Eve when we kids got to pick one package to open before bedtime (not our usual Wait Til Morning deal, so that change in our family script, all by itself, was remarkable.)  I chose a gift from Mimi, mother of a college friend of my mother’s.  Why I was on Mimi’s gift-giving list every year is a wonderment all its own, and perhaps that was what made me choose her offering. Whatever came from her was sure to be more exotic than anything else under the tree.  Mimi was from Philadelphia, after all!

I could not have chosen more wisely.  Mimi’s gift to me that year was a Japanese doll, delicate and porcelain, and SO much more elegant than any Barbie could ever be.  She had fantastic accessories: two kimonos, a shiny obi, a pair of hand-painted platform sandals, a hand-painted fan, and a stunning little handbag.  In other words, little girl heaven.

She also came with three wigs, complete with helpful descriptors: The Monoware, for young teenagers 16 – 17 years old. The Shitajimage, mostly for man-actress in Kabuki play.  And the Takashimada, for well matured girls, 19 – 22 years old.

I was not big on dolls when I was little, but this one slayed me.  So lovely, so refined.  And yet, what I remember clearly was my little-girl relief that her hair, her actual hair, was pixie-ish. Just like mine!  She may have covered her head up with amazing feats of lacquer and bows and baubles, but underneath, she was just like me.

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* * * * *

Fast forward to last Thursday.  On a not exactly joyful outing, I found myself on Newbury Street, looking for an address that seemed invisible.  Who knew that wedged between the upscale Vogue-worthy storefronts are portals to other worlds, a la Harry Potter’s Diagon Alley, where you can buzz yourself in and find curious shops you never knew existed?

Like, for instance, the salons where they sell wigs.

This all seemed so cart-ahead-of-the-horse.  I haven’t lost any hair yet, though I’m sporting a particularly flat look, due to an extra dollop of conditioner, the better to be able to rake out my little rats’ nests these days.  There’s something particularly somber about combing your hair with the knowledge that any lost strands are gone for good. (Okay, apologies due to the love of my life.  That was a  “Welcome to Your World” moment. I get it. But you’re a guy!) Meanwhile, everyone kept telling me to go in for the wig ahead of time.  Let them match your color and cut, have it ready to go when you need it.  So, I buzzed myself in, and up I went.

The woman who helped me out could not have been more kind.  We picked a style and a color, put in the order, and made an appointment for a final cut later this week.  I suspect I’ll be looking a bit more Anna Wintour (on a bad day for her) than like me, when all’s said and done.  But the place the kindly wig-woman got me to, psychically, at least, is exactly where I was looking to land: that is, in a world that resembles something approaching normal.  All I’m aiming for is the capacity to stand in the grocery checkout or walk down the street and not have my head (or my headscarves or slouchy hats on humid days) announcing to the world, Oh You Poor Woman.  I was so hoping to get away with not having to go down this path, but once the treatment plan was set, well, here we are.  Anything I can do to make it feel like I’m still me, not damaged goods, not a cancer victim—that’s worth the weird embarrassment to my vanity that comes with buying a wig.

And so, on we go.

As you can see from the photos, I still have that precious gift from Mimi.  My little Japanese doll has lost one of the wigs and both of her thumbs, poor soul, but her placid face shines on.  And her pixie haircut is my new inspiration.  I’m looking forward to sporting one of those of my own, come June.

Medical metaphors for closet English majors

Here’s an explanation on the dog reference from the last post:

Good doctors, I’ve decided, are like the good math teachers you had along the way.  The ones that could explain a problem, see a cloud over your head, and start over again, explaining it from a different angle.  Because in math, as in most of life, there’s more than one way to get to the same end point.  And it’s a bonus when a teacher can pull more than one explanation out of his or her goody bag, and get to the one that resonates.  Light bulbs over our heads are so much more delightful than more dark clouds.

I’m discovering that in the world of cancer doctors, there are lots of ways to give a patient some  little visualizations of what you might be dealing with, or how the treatment might work.  Good doctors have lots of them up their sleeves.  Here’s my favorite so far:

Cancers are like dogs.  There are so many kinds, how can that be?  Well, there’s the big ones, the little ones, the gentle ones, the fierce ones.  There’s the ones that start small and grow fast, there’s the ones that start small and don’t morph into bigger, more unpleasant versions of themselves.

Following the dog metaphor, here’s how my diagnosis evolved: Okay, so there’s something here we need to take a look at.  It’s little.  Really little.  A lap dog!  And we suspect we know how that lap dog will behave, because we know lap dogs.  Okay, so we’ll check your nodes, but honestly, it’s early, it’s small, fingers crossed.  Oh, hmm.  Lookie here.  Another lap dog, about the same size as the one we knew about, but hanging out there in your armpit.  Still, not big, not mean.  Not a pit bull.  But you’ve got yourself a lap dog that doesn’t behave as predicted. A lap dog that growls, let’s say.

So, that’s what I’m calling it.  My euphemism for this encounter with breast cancer is my growling lap dog.  I apologize to all of you out there who have lovely little lap dogs, and I mean no slight to your beloved pets.  But I am, as you may know, a cat person, so I suspect that’s another reason this visual is working for me.  We’re out to kick the crap out of my growly little lap dog.  Who, as my almost sister-in-law Niddy has already pointed out to me, had the temerity to get itself adopted into my life and pee in my shoes.  Yep, we’re out to send this creature packing.

When we get to hormone meds, there are more entertaining visuals.  I’ll save those for later.

Day 2, post my first dose of chemo, and I feel fine.  I’m not sure my raging against Lance Armstrong’s pathetic excuse of a confessional last night had to do with the fact that I hate nothing more than non-apology apologies (“I’m sorry you think that’s what happened” ARGH) or that, amusingly and ironically, I’m on performance enhancing steroids as I type.  I’m going to go ahead and say that using steroids in the service of keeping my body functioning as desired with the chemicals we’re throwing at it is what steroids are actually for.  Okay, I confess everyone’s doing it down at the oncology-hematology wing.  I wouldn’t want to get left behind, after all…and I guess that’s Lance’s excuse too.  Do with that what you will.

So, so far, so good.  I’m feeling so very much better than I thought I would today.  That is a blessing. I’ll take all blessings headed my way.

Pockets full of blue sky

On Monday, I paid a visit to Dana Farber for a second opinion conversation.  DFCI is the  mother ship of cancer care, just a short drive from my home–and, at the same time,  a world apart from life as I know it.  The whole medical area is such a curiosity,  full of brilliant people speed-walking around in their pjs and rubber clogs and shower caps, along with regular human beings, stressed in equal parts by whatever medical malady has them visiting their hospital of choice, and by the angst that comes with finding their way around in this maze of parking garages and porte cocheres and gift shops and service docks.  I am at my most behind-the-wheel benevolent when I’m driving anywhere near the Longwood Medical Area, knowing that the hesitant car in front of me with Maine license plates could have been me with my sister, thirty years ago.  No need to add to an ailing individual’s stress by being the typical impatient Boston driver.

My stress should have been relatively low, given that all I had on my agenda for the day was to have a conversation with, presumably, no new news.  All I was doing there was getting ready to talk to an oncologist who had received all my films, slides, reports, and other ephemera, and have her tell me if what my team of able physicians was proposing for care going forward looked reasonable to her.  Truth be told, I was feeling like this was all just so much hoop-jumping; the chances that my test results had been misread and my pathology findings were all upside down and backwards seemed hugely unlikely.  And yet, doctors (the good ones, anyhow) don’t want you making big decisions without going through some due diligence.  Confident as I was that my docs had it right, and anxious as I was to get the show on the road, treatment-wise, I knew this was a necessary step.

The day dawned damp and gray, which added a level of gloom I had not expected to feel. I’d already googled the doctor I’d be meeting, so I knew she had wild red hair and great credentials.  Honestly, was hoping to fast-forward to the part where she would say, “Yep, this is what I would recommend, too.”  And yet, at every turn so far along this adventure, whenever I’ve gotten a notion in my head about what might happen next, the actual result kept not being exactly what I was hoping for.  Yes, it’s cancer, but it’s so very small.  It’s small, but curiously, it’s also in your nodes.  There’s not a lot of nodes involved, but your Oncotype is in the gray area.  I had no expectations that this brilliant consulting doc might say, “Oh, please, you’re docs are totally overreacting, you don’t need chemo.” I knew that would be too much to wish for.  What I wanted was, quite simply, confirmation that we were on the right path, so I could get moving on that path.

Which, in the end, was what I got.  Delightful, blissful clarity.  Go forth and be medicated, with the full credentialed DFCI blessing.

As I left the mother ship and stepped out onto the sidewalk, I felt like a life-affirming pronouncement was right there, in the air, all around me. The gray clouds were gone, the damp mist had evaporated, the sun was shining and the sky was blue.  It was the kind of sky that could even make the world’s ugliest parking garage look like just so much backdrop to a glorious new day.

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Something about that new-found blue sky day put it into my head that what I needed to do, sooner rather than later, was head north, for a short visit to my home away from home.  Time to sit in front of the fireplace,  take down the Christmas tree, soak in the tub, and go for a rejuvenating hike/walk on my favorite five mile loop.  I needed a couple of hours of brisk air and chickadees and visions of white mountains and tall pines.  I got what I wanted, and then some.  I also got that same amazing sky, full of wispy clouds in constant motion, curling and recombining and doing their own little do-si-do-ing dance.

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Once again, the sky was speaking to me.  The world was a glorious place, and i was lucky to be in it, of it.

 

Now I’m back at home, and tomorrow will not be just another day.  Tomorrow will be the day I start the treatment phase–the day we take this growling lapdog of a cancer of mine, and start kicking the shit out of it.

 

 

 

Here we go

It was six weeks ago that I got a call: words so simple, so life-altering.  We’d like to have you come back in, the doctors want to take another look, we can schedule an ultrasound for this afternoon if you can make it in, and perhaps a biopsy, if need be.  Needless to say, they were the kind of words that travel in though your ears and land with a thud at the pit of your stomach, the kind that rattle around in your head at 3:00 in the morning.  Truth is, you can’t know how you’ll react to words like those until you hear them spoken to you, and even then, they leave you not knowing how to react.  Hmm, invasive ductile carcinoma, time to fold the laundry?  That notion made as much sense as anything else I could do in the face of such news. 

But here’s the thing: from that first day forward, at every step along the way, the scary words were continuously accompanied by a recurring chorus of hopeful words:  We’ve caught it early.  We caught it teeny-tiny.  This could be SO much worse.

So, yes, in In the middle of all the dark news, here’s what I know for sure: I am SO lucky.  I really, truly am, on so many fronts.  This is a bump in the road.  It will soon be in the rear-view mirror.  But for now, my job is to navigate my way from here to there.

As I continue to heal from the lumpectomy and sentinel node biopsy, I’m facing decisions around what my treatment will be, decisions that are evolving from the imperfect information gleaned from those procedures.  The good news is that I am not alone in this process, not by a long shot. Together with my medical team, an astounding group of women who delved so much deeper into the natural sciences than I can even begin to comprehend, I am getting a handle (if not a PhD) on what my options are, going forward, and what I can expect to encounter down the road.

So, here we are.  I’m jumping into the blogosphere to provide you, my extraordinary friends and family, with a place to peek in on what’s up with me these days.  I’m not naming names–not mine, not my docs, not my locale–call me crazy, but I’m doing this for you, my loved ones, and not to create more google hits for myself.  This is just me, talking to you guys, for whenever you’ve got time to check in.  OnDemand listening in, sort of.

Confession: I’ll be doing this for myself as well as for all of you.  Because what I know most assuredly about myself is this: when things get complicated, I need to write about the confusing concepts in my head, to figure out how I actually feel about them.  I’ll write to muddle through what’s coming, what’s happening,  and I’ll wake up in the morning and know what I know. 

So, thank you in advance for being on the listening end of my little story.  I’m looking forward to keeping you all posted.