Change of plans

Yesterday was pretty crazy. We were stranded Sunday night in Boston because of weather and heavy air traffic in the New York area, and had to spend the night in a hotel. We made the best of it, but being a day behind schedule bugs me and my type-A ways, especially when my to-do list is long and my time for completion is short.

Home sweet home ala Charles Schultz

I’ve traded the beach views for the view of the lake across the street, and while the vacation was fabulous, there’s no place like home. I love the beach and never tire of the sound of the crashing waves, but there is something to be said for the comfort of sleeping in my own bed.

Monday was supposed to be my day to “get ‘er done” and take care of all the pre-op chores. I did indeed get it done, but was half a day behind because instead of hitting the ground running, I was traveling from Boston to Houston. Don’t be jealous when I tell you I spend yesterday unpacking, going through a big stack of mail, sorting the recycling, doing laundry, getting groceries, organizing school supplies, returning phone calls, and giving thanks & treats to our pet sitters.

Today would have been a similarly busy day, but instead of wrapping up last-minute things before the surgery, I was fielding a call from my doc’s office tell me that the surgery had to be postponed. The surgical center that he uses for the type of procedure I’m having is under construction and behind schedule. Did I mention that I don’t like a change of plans?

My brain has been racing with details of the to-do list, and unwelcome thoughts of the surgery keep bulling their way in. I’ve been strangely nervous about this procedure. I expected to be joyful and excited but instead I’m uneasy. This should be a piece of cake compared to the many previous procedures; it’s out-patient for once. It also should signal my approaching the home stretch. I’m not there yet, but with this surgery behind me I would be one step closer.

So why the nerves? As REM would say, “What’s the frequency, Kenneth?” I have no idea, but perhaps it was my instinct telling me it’s not time, it’s not going to happen. Perhaps it’s the proximity to the start of school and the end of summer. I’m not good with transitions and definitely don’t like change (part of the Type-A package, perhaps?); even though the shift from summer to starting school is usually quite welcome (for me, but not my kids), I’m struggling this time around. I’m all ready, but still feel like there’s not enough time. This procedure has been in my mind a harbinger of the end of summer and the beginning of the elusive pursuit of getting back to “normal.” When I endured The Big Dig in March, I knew that as gee-gantic as that surgery was, it wasn’t the end of reconstruction and that a couple of revisions would be required. Once everything settled, so to speak, after The Big Dig, I was left with a decidedly less-sunken chest and absence of post-mastectomy-infection scar tissue. Things were much improved in the chest region. However, as with most masterpieces, the first draft wasn’t the final draft.

The second draft was scheduled to commence at 6:30 a.m. tomorrow in a hopefully-germ-free surgical center instead of the mega hospitals I’ve been in for the previous gigs. The goal is to reallocate some fat from the ends of the 17-inch belly incision to fill in the not-quite symmetrical boobage. I’m requesting that my doc fine-tunes my belly-button scar, which is kinda grody, and  he will also work his magic on the spots of scar tissue along my belly incision. There are several pea-sized spots that are quite the menace: pain, throbbing, and impaired mobility top the list. I hope that there will also be some cleaning up of the “whale tail” ends of the belly incision. As the moniker suggests, the ends of that big-ass incision look like a whale’s tail, and while I marvel at the giant sea creatures, I don’t want a facsimile on my bod. Thank you, googleimages, for the visual. Imagine that lovely tail upended vertically instead of horizontal and you’ve got a good idea of what the ends of my giant incision look like.

But alas, none of this will happen tomorrow, and I have to wait. In addition to not liking a change of plans, I’m not a big fan of waiting either.

The reason for the delay is legit, yet my cries of “find me another surgery center so we can stay on schedule” went unheeded. It seems that the surgery center I was scheduled for has the right equipment for the fat transfer procedure, and while we certainly could find another gig, there’s no reason to rush it and every reason to wait until all the conditions are right. Not every surgery center/hospital has the stuff my doc needs to suck out my fat, and the one that does have the right stuff isn’t accommodating patients just now.

Three things about my visit to the doc today that were unpleasant, besides the news of the delay. First, he introduced a possibility that I had not considered: infection.

Oh yes, infection.

The very thing that dominated my life for most of the past year is now conveniently shelved in the way-back recesses of my brain. I hadn’t even thought about the possibility of re-introducing or re-acquiring an infection. Yet as my doc lovingly pointed out, with me you just never know.

So he’s thinking of sucking the fat out of the dog ears and throwing it away. Sounds great, right? Get rid of the little bulges at either end of the big-ass incision. I’m all for that. But then what do we use to smooth out the not-so-round part of my newly constructed chest?

And that brings us to the second thing that was muy unpleasant during my appointment today: the search for other sources of fat.

I thought I’d plumbed the depths of humiliation with the “grab the fat” game we played more than once in preparation for reconstruction. In this game, the doc asked me to drop my drawers so he could grab my belly fat and determine if it was plump enough and plentiful enough to construct a new set of knockers. In a modified game of Twister, he had me sit, stand, and lean over to see just how much fat I had around my middle. Not once, but twice.

Humiliating doesn’t quite cover it.

But today, it was total humiliation, all humiliation all the time. I was basically splayed out like a deboned chicken on the exam table while he searched and plotted. Ladies and gents, just imagine your least favorite body parts being put under the microscope so to speak. Just consider for a moment being asked to stand up, sit down, and contort your body in the absolute least-flattering ways so that the softest, flabbiest, most-despised parts of your body are on full display. And then have those parts analyzed and calculated to determine just how fatty they are. We go to such lengths to de-emphasize these body parts, yet mine were being trotted out like the prize-winning hog at the state fair.

And in closing, we’ll cover the third and final unpleasant thing about my dr’s appointment today: prophylactic antibiotics.

Yes, that’s right: I used the “A” word. Antibiotics. Again.

I’m going back on my old friends Bactrim and Minocycline as a preventative. Just in case any wily bacterium were thinking of re-establishing a house party on my dime. I’m nauseated just thinking about it. I spent how many days taking the dynamic duo? 267. Yep, 267 straight days of swallowing 2 pills every 12 hours.

Is there no end to this madness?

Stay tuned.


One of the many hard truths

It’s been a while since I’ve seen my dear friend and most beloved surgeon. He’s been busy this summer traveling and I’ve been busy avoiding his office. Not because I don’t love him and his staff–I do–but because the longer the gap in between appointments, the more I can pretend to be normal post-cancer.

Or so I thought.

I’m learning the hard way that there is no “normal” post-cancer. Most people (myself included) have the impression that once you’re diagnosed,  have surgery, and complete treatment, you’re done with cancer. But you’re never done. This is one of the many hard truths about cancer: you’re never done.

Three-fourths of the way through my 2-week vacation, my thoughts more regularly return to cancer. And surgery. When I first arrived at Salisbury Beach, I thought, FINALLY! I’m here, I’m on vacation and can take a much-needed, eagerly anticipated, and well-deserved break from cancer. I’d thought of little else in the days leading up to my vaca and was ready, oh so ready to get on the plane and be there. 

It’s been great — good weather, huge waves, plenty of cocktails & lobster, and the company of friends who’ve become family. I missed all this last year because of that damned post-mastectomy infection, and I was determined to make up for lost time this year. And I have. Yet my brain isn’t entirely on vacation, and as I’m soaking up the sun and relishing the cool east wind, my brain says “Whatach think about your upcoming revision surgery, missy?”

I don’t want to think about it. I’m on vacation. I should be thinking about what to drink next, or whether to get the 1-pound or 1.5-pound lobster. Yet I do think about it. The brain prevails, and my thoughts turn from all things beachy to thoughts of yet another surgery. While the upcoming surgery is a good one in the realm of surgeries, it still means arriving at the crack of dawn, being assaulted with the dreaded hospital smell, enduring endless digging to find a non-wiggly vein for the IV, undergoing anesthesia, coming out of anesthesia, and starting yet another recovery process.

A couple of months ago when I scheduled the revision, one of my wise friends said don’t you think you might want to do this after the kids go back to school? I said hell to the no, I want to get this done ASAP and get on with my life; I don’t want to wait even one more week because I want to be done. But now I know that I’ll never be done.

Yes, I will get to a point in which I no longer have surgeries and revisions and procedures on the horizon, but I’ll never be done with cancer.

Thoughts of the “big C” will infiltrate my brain here, there, and everywhere. On vacation. In the grocery store. On the tennis court. At the baseball field. In my bed, while I should be sleeping but instead am thinking. About cancer. 

I woke up the other night–on vacation, mind you, with the windows open to the cool breeze and the sound of the crashing waves–thinking about cancer. Even when I’m sleeping, those thoughts are in my head. As my revision surgery approaches, I find myself with the same apprehensions I’ve had before every surgery I’ve had since my diagnosis. I may be nearing the finish line in terms of procedures required, but my thoughts refuse to budge. Instead of getting closer to being done, I realize there’s no such thing.


The new bucket list

“for whatever we lose (like a you or a me),

it’s always our self we find in the sea.” — ee cummings

I love ee cummings. While I’m usually quite the stickler for adherence to the rules of grammar, spelling, and punctuation, I’ve always loved that cummings eschewed the rules and let the words and his thoughts flow unbridled.

He’s quite right about finding our selves at the sea. Not finding ourselves, but our selves. See the difference? Actually, it’s quite hard to see; it’s more something you feel.

Losing your self in the morass that is a cancer battle is fraught with peril. Having a potentially fatal disease changes you. It messes with your mind, shakes your sense of security, and makes you question the future. Having a potentially fatal disease at a young-ish age with young kids to raise really changes you.

My blogfriend and fellow cancerchick Michelle writes about this change. She writes of fear, of wishing for a return to the carefree, pre-cancer life. She mentions fear. The fear of recurrence. The fear of not being here to witness the millions of little things, seemingly insignificant, yet the essence of what creates our life.

See, for a cancer patient, the fear is always there. It resides deep in the “self” that we wish to find in the sea. Despite best efforts to be brave, move forward, and face the unpleasantness that is life with cancer, the fear is there. Sometimes just below the surface, like a homemade marinara sauce bubbling fragrantly and yummy on the stove. Sometimes right on the surface, as evident and painful as a sunburn the first day on the beach. Fear becomes the new normal. Michelle writes of the “new” normal:

“My new normal, I suppose [is] living each moment with equal parts gratitude, for experiencing it and really soaking it in now, and fear, that it may be over too soon.”

Hear, hear. Well said, Michelle.

Another blogfriend, Lauren, writes similarly.  Because she is 5 years out from diagnosis while Michelle and I are more recent arrivals to cancerland, Lauren writes not of the ever-present fear but of the urgency to experience all the things we fear we might not be here to experience. The bucket list takes on a whole new priority post-cancer.

Says Lauren:

“It dawned on me that cancer survivors also have a different bucket list. One that isn’t the places we want to go, or what we want to buy or learn to do, but one comprised of the things we want to live long enough to experience and see come to pass.”

Yes, that’s true. While there are places I want to see and plenty of things I want to do, I know now, post-cancer, that there’s a difference. Everything is different post-cancer. I’m still looking for that new normal, and my bucket list changes somewhat, but one thing remains constant: while I’m still scared, there’s still plenty that I want to see come to pass.

For now, I’m enjoying the ocean breezes, the sound of the surf, and the sunset over the water, knowing that with each new day, there’s plenty to see. 


The BIG Belly

I’m not much for big breakfasts. Not real crazy about greasy, meat-centric fare either, but I didn’t want to pass up a trip to Pat’s Diner this morning. It’s gotten great reviews from Payton. He went there one morning last summer while he was at the beach without me. I was home, just out of the hospital yet again and attached to a wound vacuum, which was enlisted to clean up the mess from the post-mastectomy infection.

My boy spoke highly of Pat’s, and while that alone would be enough for me, the fact that it’s run by some fellow Greeks sealed the deal.

Pat herself greeted us and showed us to our table, instructing a waitress to wipe the table, even though it looked plenty clean to me. Pat reminded me of all the Greek women I’ve known in my life–dark hair without a streak of grey despite her advanced age; sensible shoes juxtaposed with a snazzy dress, crisply pressed; maddeningly wrinkle-free skin; bossy yet loving countenance. She was very familiar to me indeed (minus the Boston accent, though). I smiled to myself as I reminisced in my head about my Thea Sophia and all women like her. Sweet but opinionated, fiercely devoted to family, and absolutely not content until everyone got up from the table with a full belly. The Greek women I know live by the mantra “Food is love made visible.”

The fellas alongside me ordered some of Pat’s finest: the “short” stack — pancakes as big as the plate; Amesbury omelette (spinach & lots of Swiss cheese); Irish eggs Benedict (corned beef hash instead of Canadian bacon); and the beach breakfast: eggs, toast, home fries, bacon, link & patty sausage, and ham steak. By all means, don’t forget the ham steak.

I was the odd one out with my egg beaters w assorted veggies & wheat toast. Instead of home fries, I opted for the other side dish: baked beans. They’re not just for breakfast anymore.

We did indeed get up from the table with full bellies, and as we passed Pat at the register on the way out, I told her we came all the way from Texas to eat at her place. She was delighted, and insisted I take a to-go menu with me as well as her business card. She asked me to send her a card from Texas. I promised her I will.

Trevor whispered to Pat that I too am Greek, and she was really delighted. She dug around under the counter a sec and handed me something, muttering that not everyone gets one of these. It’s a matted 8×10 color drawing of the exterior of the diner. Very cool. I will definitely send her a card from Texas.


He does it again!

Apparently my favorite Red Sox player likes having Texans in the house…since we’ve been here, he’s hit back-to-back walk-offs for Sox victories. Very nice. Last night’s was especially exciting because it was a walk-off home run.  Just as we were hoping against extra innings, Jacoby delivered.

There will be lots of happy Sox fans on the beach today. I’m heading down in a few minutes for more fun in the sun. Last night’s lobster feast at Markey’s was as good as ever. Macy had asked if she could have some of my lobster tail, and rather than share what IMHO is the best part of the lobster, I said, “Get your own, kid.” We figured she’d eat part of the tail and we’d have extra lobster to put in scrambled eggs this morning. Then we learned that there’s no such thing as “extra lobster.” That bug was picked clean. 

So there will be no lobster & eggs this morning. No matter; we’ll get more. That’s the beauty of being at Salisbury Beach — plenty of lobster, whether from Markey’s or steamed on site at the grocery store.

Trevor will be creating another sand sculpture today, to add to the two he’s already done: 

He’s taking requests, so if there’ something you want to see, by all means shout it out. His sand sculptures are pretty popular around here and are much admired, although I thought Macy might smack the lady who walked by yesterday and thought Perry the Platypus was a dinosaur. Sometimes being in the presence of art invokes strong emotions.

We’re all about traditions at Salisbury Beach. Whether it’s dinner at Markey’s or dessert next-door at Dunlap’s or sand sculptures on the beach, tradition rules, and this year our traditions are even more special. Like the Joni Mitchell song says, “Don’t it always seem to go, that you don’t know what you’ve got til it’s gone,” traditions become more important when threatened with extinction. To say I’m glad I’m here this year is to be loaded with meaning. I’m glad I’m here, in Massachusetts among friends I consider family at a beach my family loves. But even more so, I’m glad I’m here.


Walk-off

20110803-093241.jpg

It’s a great morning at the beach. The Sox won last night with a walk-off hit by my favorite player, Jacoby Ellsbury. Hopefully the photo will load; I’m blogging beachside again and don’t want to interrupt my blissful morning to post on a real computer; if my iPhone and the WordPress app can’t handle the photo, I’ll get to it later. Maybe when a cloud passes overhead.

It’s unusually clear today, enough to see the Isle of Shoals. The sun is shining and the west wind is blowing. I’m pre-hydrating with a water course so I’ll be fully prepared for the beachside beverages, whenever they may appear. While the lure of the Bloody Mary is strong, I’m going to stay strong and wait for the pm bevvie.

Meantime, all hail Jacoby!


Blogging beach-side

My toes are in the sand as I write this. The waves are crashing as the tide comes in; seagulls are squawking as they scrounge for breakfast. A few fisherman have set up long-cast poles, hoping the early bird gets the worm. I mean fish.

I kept flight attendants Scott & Devin hopping on the way here. They did a very good job refreshing my beverage and they served me a lovely salad topped with grilled shrimp with fresh fruit on the side. The fresh-baked white-chocolate-macadamia-nut cookie went straight back to my kids who were slumming in coach. My new flight attendant friends were bummed that they’d run out of cookies before realizing my kids were back there. I watched Mardy Fish trump Ryan Harrison on the tennis channel in flight, started a new book, and accepted cocktails from the dynamic duo. There was a slight miscommunication though, and Scott offered me one more as we started our descent, not knowing that Devin had already locked up the bar. I teased them enough that they sent me off the plane with a bottle of wine, wrapped festively in a cloth napkin. We drank it on the train and toasted my new friends.

Yesterday was one of the best beach days ever. Today looks like a repeat performance. I’ve had a cup of coffee and made a quick run across the state line to the nearest store to procure a few supplies we didn’t pack because we carried our luggage on. We had a quick turn-around between landing at Logan and catching the train to Newburyport. Despite my sage warnings yesterday, my kids got sunburned–Macy on her arms, Payton on his legs. My little darlings are accustomed to the aerosol sunblock, but were left to their own devices with the old-fashioned, rub-on kind. There’s nothing fun about getting scorched on the first day at the beach.

Our lovely hostess treated us with homemade lobster pie upon our arrival, after bubbly on the beach. Both were as decadent as they sound. Acutely aware of all that i missed last year, I’m savoring every crumb, every drop. Soaking up the sun, relishing the sound of the ocean and the feel of the cool breeze. Cancer and its myriad troubles are a long way away.