Tuesday, December 20, 2011

3 Month Postoperversary

The times that I feel moved to post are further and further apart, and that's a good sign. Because what you want to happen when you go through cancer, is for it to begin to recede into the background, eventually. For it to not take up so much space in your head. For your body not to remind you every single minute that it's been traumatized. For your mind to dwell on other things.

Like your thighs.

I have always hated my thighs. They're sturdy. I am not built for speed, instead, I am, as my father has pointed out, built for famine. I am stocky and hardy - and no, not willowy. I always, always have wanted to be willowy.

Well, when I was first diagnosed with cancer in '01, I suddenly realized that I could care less about my thighs. I was so stressed out about not being able to have a baby, having to get chemo, what I was going to do about work, and, well, yes, dying, that my thighs zoomed down and off the "to-worry-about" list. It was refreshing, in a sick way. I was prioritizing, and really, what the hell was I going to do about my thighs, anyway? Gotta work with what you're given. Head down, fought the cancer. Won. Check!

Moving on, the hoopla washed away and gradually, the thigh-angst started up again. As before, I tackled them with squats & lunges and did the best I could to "play up my assets," as they say in Glamour.

And then, whammo, Cancer Round II. And who can worry about thighs when your breasts are being removed? Not me. Again, off the list.

But you know what? They're back. In all their gelatinous glory. Three months of recovery has made me go a little soft all around the edges, and today, I really hit the wall with the thighs. I know it's not right. I'm a middle-aged woman. I'm not supposed to care. But I do. Now that the foobs are squared away, I'm back to squatting, lunging, and angsting.

It's good, right?

xo,

Sarah

Thursday, December 8, 2011

Reminder: Mother Nature is in charge

I've been feeling pretty darn good lately, and it's been really exciting to be doing things again, seeing people again, being out of the house and into life again. But for the past few days, I've been really dragging. There, I'm admitting it. It's out there.

I'd like to blame it on the season - we all know that responsibilities are quadrupled this time of year, right? Add to that keeping up with daily exercise, twice-a-week PT, solo-parenting for a week, participating in and even spearheading after-school and evening activities and events - well, even if I weren't eleven weeks post-op, I'd be dragging.

So I have been trying to take it easy, but it's just been too tempting. And there's this little problem of there only being 24 hours in the day. I've been pushing through, I'll admit. A little draggy before spin class yesterday? No matter. A mug of gunpowder tea, throw on the spandex, strap on the heart rate monitor, and I was there. I did the class, met a friend, came home, showered, met L. and a friend at school, hosted a play date, made dinner, dealt with reservations, signed up for a class, and fell into bed around 10. Nada problemo, right?

Well, wrong. I can do more today, but my body is really nagging me. It's like a toddler's pulling on my pant leg, whining, "When are we gonna lie down? Is now when we're gonna lie down?" So after I did errands this morning, I realized I needed to call the rest of the day off (until I chaperon the Brownie field trip, that is - but that, my friends, is a non-negotiable). So I have. No Pilates lesson for me, and although I know that this is the responsible thing to do, I'm pissed off about it.

Remember how I was content the other day? Well today? Not so much. There - see? We knew that'd be short-lived. I guess I should clarify - I'm still OK with the foobs, yada yada yada: I'm just frustrated that I can't have it all back right.this.minute.dammit.

But whoa, step back, perspective time. I just closed out 10 weeks post-op. I've been told by more than a few experts that it will take a year to feel completely like myself again. I know I'll be doing more, well before that time, but I'm still at the front side of the continuum of sitting on my ass . . . to racing around like the maniac I am.

My PT says it, over and over again: "Mother Nature is in charge, Sarah. We have to let Mother Nature do her job." Sigh. Just like you never want to admit your mother's right, so it goes with Nancy the PT. But often, both the PT and the mother know best.

So I'm crawling into bed for the next hour, 'til I have to help shuttle 18 8- and 9-year-old girls through Whole Foods Market and talk about nutrition. After which, I will come home, perform the bare minimum of duties to satisfy my own maternal obligations, and collapse into bed. And tomorrow? I'm giving myself a time-out. 'Cause I can't stand a whiny toddler.

xo,

Sarah

Wednesday, November 30, 2011

The wonder of it all

Forgive me, friends, if I get soft and sappy here. Today was a really great day for me. I worked out for 90 minutes, did things around the house, got Lilah at school and took her shopping until dinner. I made dinner, cleaned it all up, tidied for the cleaners, put her to bed. And I'm still standing. Tired, but standing. That, friends, is what being NORMAL is all about.

And having just put Lilah to bed and after having filled her Advent calendar with chocolate treats, I'm sitting here misty. And full of happiness and calm. I'm content. As I was putting away the leftover candy, tidying the kitchen, and thinking of crawling into bed with a book just now, it dawned on me . . . I'm at peace with all of this tonight. With the second cancer, with the mastectomies, with where I am right now. It's all OK, I'm going to be OK, and despite all the mess of the spring, summer and fall, I'm still so damn lucky and blessed.

Oh, don't get me wrong, I'm sure there'll be times where I rail against it again. Bad days, days when I'm reminded of my limits, some day when I have to get these tires changed . . . but at the bottom, I'm still myself, I still have my life, and I'm feeling good enough again to really, truly, just get on with things.

I also feel certain that something new and interesting and good is going to come of Cancer Round II. Yesterday and today, I started to really drill down on what I wanted to do to delineate pre- and post-op. Doesn't have to be major . . . it's just that I can't have gone through this and, well, just go back to laundry and carpooling like it never went down. (Not that it isn't every woman's dream to launder and carpool.) So whether it'll be an intensive cooking class, or breaking into the speaking circuit more formally, or taking Semi-Sweet to new and different places, or overcoming my fear of clipping in and becoming a serious cyclist, or writing that book I keep toying with - it'll be something.

But for this moment, I'm going to wallow in contentment. Enjoy the Christmas season, conjure up surprises to delight my daughter, conspire with her to delight my husband, feel the rush and the crush of holiday preparations and celebrate being healthy and able-bodied again.

Me again!

xo,

Sarah

P.S. Tomorrow, I start back with my beloved Pilates instructor . . . 2 milestones in two days? Mind-blowing.

Wednesday, November 23, 2011

A true Thanksgiving

What I'm thankful for:

a second, second chance
doing little things for my girl that make her insanely happy/excited
strong, hot organic Chinese gunpowder green tea
my unrelentingly supportive husband
Spanx
hugs
connecting with random strangers over breast cancer
Cheetos
spooning
putting my hair in a ponytail
browsing Target
reaching for things on high shelves
Chinese food
the smell of fresh-cut grass
my spunky daughter
waving my arms in the air
hydrangeas
books
outings
Wii Just Dance
the beach
watching the seasons change
looking just the same as I always did, with clothes on
social media
poring over food porn
taking care of my family
nachos made in the microwave
sunrises
sunsets
listening to loud music in my car
micro ice cream sundaes from Rancatore's
being able to dance again (but not so much in public)
the smell of crisp fall air
good neighbors
hot soup
having the energy to do more than one activity in a day
Ellen DeGeneres
cooking delicious meals
the mundane tasks of daily life
hard cardio to loud pop music
holidays
the loving support of friends - old, medium & new
Bobbi Brown creamy concealer
the loving support of virtual strangers
warm zucchini muffins with raisins and walnuts
long, shiny hair that's mine to keep
spin class
roast chicken
moxie
perspective
a shot at seeing my daughter grow up
sweating
belly laughing
the knowledge that every single thing in life is temporary
about a million, bagillion other things

I hope that all of you can find something to be thankful for tomorrow, and every day. I wish you the most wonderful Thanksgiving!

xo,

Sarah

Friday, November 11, 2011

My meal ticket, or, how I got over myself and accepted help

Last night, our last meal was delivered. Some of you might not realize this, but EVERY SINGLE Monday through Thursday night since September 20, 2011, (plus some random and delicious off-calendar surprise meals!) a meal has been delivered to our home. And I'm not talking sacks of McDonald's cheeseburgers, I'm talking full-on, home-cooked, thought-through meals to serve our little family of three, and then some. Each night, Dave, Lilah or my mother-in-law Janet would go to the cooler on the back patio to bring in the goodies. The kindness bestowed upon us was simply amazing.

And to think, I hate to ask for help.

This trait of mine is surely borne of my experiences growing up, those as an adult with cancer and of my type-A personality. Why depend on others when you can just motor through and do it yourself? Why risk being a burden? Who KNOWS where that'll land you? I mean really - who gets cancer TWICE in 10 years? Avoiding being a pain-in-the-ass is practically a vocation of mine. I run from "needy." So when I realized that I was going to be unable to cook and care for my family for a while after surgery, well, my throat caught. And then I knew what I'd have to do.

Duh. Ask for help. Oy.

And it wasn't only meals, it was housekeeping and childcare, and shuttling my kid around, and shuttling me around, and picking up groceries, and and and and and. Imagine all the things you do all week and then imagine being able to do none. of. them. It's wild, really, especially for a doer like me.

But you know what? People wanted to help?! It is the craziest, most awe-inspiring thing, the most restore-your-faith-in-humanity moment when you realize that people are willingly giving of themselves and their time to get you out of a jam. No strings, no consequences, no payback. Just unadulterated good will.

"Thank you" seems like not enough to say to people who literally saved your rear at a desperate time in your life . . . but what else is there to say? I can't express fully the gratitude I feel for friends, family, and neighbors, some of whom I don't know well, but who stepped up and "did something" when they heard of my surgery. I really, truly, will never ever forget all those meals, all those gestures of love and kindness. They filled me up when I was feeling low . . . and kept me going once I started to get stronger.

I still have a way to go 'til I'm back on top, but I'm prepared and cleared to do my own, simple meal prep and transporting. And while my energy will flag easily for a while, I'll rev myself up with thoughts of all of you, and draw on all those good wishes to push forward to the finish line.

Thank you, all of you. We could not have done it without you. And while it's not over, with your help, we've certainly reached a milestone.

xo,

Sarah

Wednesday, November 9, 2011

Cleared for take off

Saw my plastic surgeon this morning and I've been cleared!

I can raise my arms above 90-degrees, push, pull, lift, do cartwheels, climb rock walls, cook (OMG, how I've missed cooking) . . . BUT . . . I need to "work up" to all this. She's "very very pleased" with how things look (although we may tweak again in several months, but we'll wait on that for now). I'm healing up well. The skin on Lefty has completely healed (that's the prior-irradiated side that was having issues). The intermittent swelling is normal and will come and go and I need to back off activity when I swell. How long will that go on? "Everyone's different," and "it could take months." Maddening, but good to know I'm within the range of "normal." Really, that's all I'm shooting for right now. I have time to work up to extraordinary.

I was, of course, pretty pumped up for this appointment, and as with most of these meetings, it was momentous for me, but not for the doc. We were together all of 7 minutes. She took "after" pictures. Her PA removed the stitch from the revision she did a month ago. I'm following up with her in 6 months - 6 MONTHS!? This is so crazy different from cancer Round I, where I saw someone every other day, it seemed. So while I was doing a happy Scooby hop in my mind, there were no high-fives, no hugs, no shrieks of joy, no grins of glee from anyone else. I made my next appointment for May (MAY?!) and away I went.

This is the way it always is. Anticlimactic. Another day's work for the doc, another hashmark in the "success" column. But when it's YOU, YOUR body and YOUR chance to return to life as you know it, it's momentous. So you gotta get out of there and celebrate.

How am I celebrating? Well, first I hit the MGH gift shop - seriously, a great store. Laugh all you want, I've gotten some wonderful things there. I stocked up on some stocking-stuffers and stationary. I paid up, bid my Valet Parking buddies farewell for another month (follow-up with breast surgeon mid-December), and hit the road. Now I'm home, completely wiped out.

Which brings me to the next point. Even when one's been "cleared," there is still a long way to go. In my mind, pre-op, I think I thought of a switch being flipped at the 6-8 week mark: She'd say "go ahead" and I'd be back to burpees in the basement. No ho-ho-ho, friends. This little body needs to ease back in. I think my greatest immediate obstacles are swelling and stamina. Got to keep that swelling at bay, and as we know, too much activity = puff-Sarah. And as for stamina - well, even morning rush-hour traffic knocked the stuffin' out of me. This is Boston. Driving is a blood-sport.

So where am I now? In bed, albeit with one of my favorite cozy OVER THE HEAD fleece PULLOVERS on. Toasty, ready to rest.

Which brings me to my last point - one I'll write more on later - but thank goodness I am under the care of my amazing PT. Now she can take over and run the show . . . she knows what's safe to do and what's worth waiting for. I see her tomorrow and am so excited for a new sheet of exercises to help me get back to buff. I simply cannot imagine being cut loose by the surgical staff and floating out here, wondering what to do next. I can't stress strongly enough how important I think it is for us post-surgical girls to get in with a specialized physical therapist. I'm already ahead of the game motion-wise, just after 2 weeks of therapy with Nancy. And you know how I love to be ahead of the game.

I'm at the "shuffling around the hospital floor" stage, exercise-wise . . . one foot gingerly in front of the other . . . taking it really slow. But the point is, I'm finally allowed to work my way back, to climb up out of the hole, up into the sunshine.

Can I get a hands-in-the-air hallelujah?? Wahoooooo!

xo,

Sarah

Saturday, November 5, 2011

Happy cancerversary to me

Ten years ago today, I was diagnosed with a nasty little breast cancer. A grade 3, triple-positive (ER/PR, HER2) small-but-mighty killer. No positive nodes, but a question about vascular invasion. It was a miracle I was diagnosed (a whole 'nother post) and we were all scared. Heck, even my breast surgeon admitted last June that all my the docs were freaked out. They were really worried about my first few years out of treatment. Would I turn up with mets? A recurrence? I got the full battalion of treatments. Took almost a year. Then another year to feel like me again. And you know what?

I'm still here.

Six months ago, I would've told you I was planning a party to celebrate 10 years cancer-free. But that got yanked out from under me by creepy little cancer number 2. That little wimpy piece of junk has fouled up my fun and caused us to move to the finale, the full monty. The "this better be frickin' IT" surgery. It's been hard, physically and emotionally. But I'm doing great, all things considered, and I'm so thankful for what I've got. Another lease on life. A second, second chance. I'm bucking Darwin and I'm feeling lucky.

So while I'm not throwing myself the party I'd planned, I am indulging in a little party in my mind. 'Cause you know what? After I finally heal up from surgery, I've got more time. Time to love my wonderful husband. Time to mother my daughter, and, knock-wood, to see my baby grow up. Time to experience more of what life has to offer; from the mundane to the fantastic.

Not much in this life is certain. Since age 32, my life has been shaped by cancer. It changed the trajectory of my adult years. I don't define myself by my cancer experience, but it has affected every single aspect of my existence since it came on the scene. Surprisingly, in many ways, fabulously. Although I never, ever would say that having had cancer is a gift, I will tell you that my life is richer, more satisfying and more joyful post-cancer.

You never, ever know what's around the bend, my friends. Sometimes it's a monster. I am so very, very lucky to have been able to survive meeting a monster twice. My life's still a work in progress: I still don't know what my take-away from Round II is yet, but while I figure it out, I am guided by the same motto since November 5, 2001: No regrets.

Cheers to years, friends!

xo,

Sarah

Friday, November 4, 2011

Seriously?

Drat. Being so good. Fruit under arms again. Maybe 'cause I stopped @ Whole Foods after PT and actually bought some fruit? Sigh.

Tuesday, November 1, 2011

On the road again

I did it. I drove, for realz. To Wellesley and home again for PT, ALL BY MYSELF. 40 minutes there, 40 minutes back (damn those Rt. 16 backups) and 45 minutes on the table. City driving, highway driving, executing turns and backing up. I'm pooped, but intact.

xo,

Sarah

Sunday, October 30, 2011

Whole lotta nothin'

No news is good news, I always say.

The swelling is back to baseline - lefty still a little puffy, righty pretty much "normal." But I've had to sit on myself all week to get here. No walking, no exercise. I'll start working my way back this week, just a little, to test the waters. I'm seeing the PT twice a week now, and she is helping to reduce the swelling and to increase my range of motion. Thanks to her and the silly exercises I do twice a day, the pain from the node biopsy is pretty much gone. Not bad for one week of PT.

I'm able to concentrate and read again, so I'm reading like a fiend (a lifelong passion) . . . trying to look at this as "fun" - when does a stay-at-home mother get to read all day and not feel guilty? Unfortunately, only when you-know-what hits a fan . . . but I'm trying to be positive here.

The best news is, I'm feeling a lot better. My spunk is back. I'm darn good during the day: still pooped in the evenings. Although I've given up my second nap altogether, I still rest frequently. I'm going to try driving more this week - new chair twisting exercises from the PT have made me feel more confident about backing up.

So the report from the week is trending positive. Not "there" yet, but as friends reminded me last week, that's gonna take a while. It's a good sign, all this frustration I feel. I'm primed, excited, ready to go . . . just have to pace myself, 'cause I don't want to get tired too early in the race to get my real life back again. Feels like it's been a long time, but really, I need to remember that this is a marathon, not a sprint.

xo,

Sarah

Monday, October 24, 2011

My mind is ready, but my body is not

Here at the almost 5 week mark, frustration is setting in. This is exactly the point my breast surgeon flagged for me, months ago, when discussing my recovery. She said that around now, I'd start to feel much better physically, and that I'd want to do more, but that I would still have restrictions, and I'd need to "sit on my hands."

And how.

After being cleared for cardio last Wednesday, I took a decent-sized (all things being relative here, it was about 1.25 miles which is a small fraction of my former distance and intensity) brisk walk. No arms swinging - they were locked at my sides. I had my workout mix pumping, Map My Run (or Walk, as the case may be) tracking my time and distance . . . I felt AMAZING. Saturday, less so. I felt like I had a grapefruit under each arm - swelling. Plastic surgeon told me that swelling was a sign of overdoing, so Saturday I lay low. Sunday, swelling down - what better way to celebrate than with a power walk? So out I went - this time I did a little more distance, less intense. Today, a veritable fruit salad under the pits.

I just came back from PT, where my dear friend Nancy set me straight. Reminded me that in the "olden days," I wouldn't even have been out of the hospital for that long at this point. That just 'cause I'm home and set "free" by the docs, doesn't mean I'm OK to go about my business. This is not the time to push through. This is the time to coddle. She pointed out that I only have one shot at a good post-op recovery period, and if I blow it, I'm screwed (Nancy is much too refined to use that word, that's me talkin'). So no walkie for me today and tomorrow while we let things simmer down. Then we do less distance and do alternating days of intensity. That way, I "trick" myself into thinking I'm exercising every day ('cause if you know me, you know this is a thing of mine), but I honor my healing body.

Those of you who know me know I'm very into the mind-body connection, but that I have a hard time slowing down. It was far easier when I felt like junk. I had no choice but to be slow. Now I feel like I "should" be OK, and yet clearly I'm not. Swelling is the body's way of protecting a fragile area, and of signaling that something is not right, says Nancy.

I mean, I love fruit, but not under my arms.

xo,

Sarah

Saturday, October 15, 2011

The deliciousness of being horizontal, and other developments

Another week down. Another hash mark on the wall of my mastectomy prison. All in all, a good week - few(er) complaints. I feel like last week was a meaningful turning point for me. I'm celebrating my 4 week surger-versary. My energy has been more consistently up, I'm feeling physically and mentally better. The strange feelings in my foobs come less frequently, although moving a little more is bringing new sensations. I off Tylenol; down to only antibiotics. And although last Wednesday's revision has set me back mobility-wise, it's healing up nicely. My swelling's way down on the right, and although Lefty is still swollen, it's much better. In sum, all baby steps forward, which is the only direction I want to travel.

So much has happened since last week! Where to start?

Saturday morning, I tried something new, and it was terrific. After breakfast I was beat and needed to go back to bed. How many times have you wanted to take a nap after breakfast? Well, having a bilateral mastectomy gives you just the excuse to indulge . . . as I scooted up the stairs Dave muttered "jealous" under his breath. (I need to find a way to treat that man to something nice, but I digress.) The sleeping at 45 degrees thing was good for the foobs but bad for the back: The upper back had been killing me the past few mornings. This naptime, I decided to try something radical. I stacked two of our king-sized bed pillows one in front of the other and lay down. I still used two smaller pillows on either side of me to support my arms (yes, people, since home from the hospital it's taken no fewer than 5 pillows to comfort me in bed), but I was NEARLY HORIZONTAL, and it felt DIVINE. I dozed and slept for more than an hour like that. Lying on my back, wondering at the feeling. Supported. Cozy. Less like a victim. More like myself again.

Saturday evening marked my first non-essential outing in a month: an early dinner at Super 88 with Dave and Lilah. I did fine, I was out! I was tired by the end (nighttime is still not the right time for me), but it didn't waste me and it was nice to be back eating at our favorite Vietnamese place, even if it was at an early-bird special hour.

Then maybe it was precipitated by that delicious Saturday nap, but Sunday morning I got up and felt noticeably more energetic. I had a little spark that I hadn't had since 9/19. Saw our neighbor for the first time since the surgery and he asked, "so when did you feel like yourself again after surgery?" and I answered, "today!" That feeling has continued and has brought so much hope. I can honestly say that I can see a light at the end of the tunnel. It's still a longish tunnel, but there's a pinpoint of light down there.

Also Sunday, I made Dave accompany me for my first driving experience. He authorized me to go "around the neighborhood," which as some of you know, is a very, very limited distance. Backing out of the driveway proved to be the most difficult - it's long and skinny and twisting around to look behind me (no, I don't trust that gimmicky back-up cam) was tough. Driving itself and turning corners was easy - this car is power-everything. I think with time and physical therapy, I'll grow more flexible and comfortable, but for now, I'm not driving much . . . although tomorrow I'm going to make a break for it to get waxed (3 minutes away). It's been almost 6 weeks and I'm usually on a every-three-week schedule. 'Nuf said on that one. It's time to take action.

Monday, I saw an old friend, a physical therapist who specializes in women who've had breast surgeries. Her job is to help us regain range of motion, strength, and to ward off or treat nasty side effects like lymphedema (the swelling of limbs or even the trunk after lymph nodes have been removed). Nancy is such a sweetheart - one of those caregivers that causes you to exhale as you leave the office. She's on your case, she's measuring and monitoring and not pushing too much, but just enough. She is your cheerleader. I now have some very very simple range of motion exercises and another set of eyes on the swelling - she is not alarmed by the swelling and will help me with some massage in the coming weeks that will help take it down further. It truly sucks to be reunited with her under these circumstances, but here again, Cancer Round I has served me well - she fixed me up right after those three lumpectomies and sentinel node biopsy messed with my left arm, and she's going to bring me back from t-rex-dom now.

Today I followed up with my plastic surgeon. Lefty looks great to her - I'm going to continue with antibiotics for another week, but all systems are go. She showed me the simple massage I need to do now to prevent too much scar tissue from forming around my implants. Twice a day I need to squeeze and push the heck out of these puppies so I can feel them move. It's a bizarre feeling - for now, indescribable. It doesn't hurt, it's just friggin' weird. Any woman w/implant reconstruction will understand. For the rest of you, just take my word for it.

But the best news, the most exciting news from today's visit with PS is that I AM CLEARED FOR CARDIO. Yes people, I can get the ol' heart pumpin' again (and not just from fear of someone coming at me w/a scalpel or a needle). I can break a sweat. That is the great news. The bad news is: no arms. No arms for 3 more weeks 'til I follow up with her again. So no refrigerator, no cooking, no lifting, no pushing, no pulling, no swinging of those arms during exercise . . . so still quite limited, but I can stationary bike (recumbent), do the elliptical or the ARC trainer (no arms), power walk (no pumping of arms), etc. Been very jacked up about this all day, but just had a thought that tempers my glee: I still cannot put my hair in a ponytail. Sigh. That alone will probably limit my activity a little. Who wants to get really sweaty with long hair?? Thankfully, this is my biggest problem today.

So about half-way there, I'm struck by how the mundane gets elevated to the sublime after an experience like this. First it was just getting out of bed and standing, then shuffling across the floor at MGH, then brushing my own teeth and washing my own face. Then the DIY sponge bath and leg-shaving . . . moving into a real shower (albeit still with t-rex arms and hair hanging over my face to wash). I've walked alone through my neighborhood, popped popcorn, gotten my daughter ready for school, spent entire days alone, moved to a horizontal position, gotten down on the floor and back up again (no arms - those UFCs (a la Jackie Warner) I did during my pre-surg. workouts paid off, peeps!). Every time I make a stride forward, I'm rediscovering some tiny, long-lost joy.

My world was made very small by breast cancer, but this past week, I feel like each day it's widening a wee bit. Although I will confess that I can't wait 'til driving, walking, erranding, exercising and tasking are all mundane again, I want to remember and appreciate this deliciousness, 'cause it's been hard-fought and I'm better for the experience.

xo,

Sarah

Thursday, October 13, 2011

Bra 911, part deux

Just back from my new fav place in town, Lady Grace, where I scored what seems to be the perfect solution to my uncomfy bra issue - nursing camisoles!? OK, so I never thought of this 'til last night when cruising the 'net for tanks with built-in bras, I saw someone on some pregnancy forum talking about how great they were - better than regular tanks with shelf bras because more supportive.

Those of you who know me know that I never nursed - our daughter was adopted - so this solution never, ever occurred to me. The straps on these things tend to be thicker, there adjustable, and the chest band is wider, so more comfortable.

These are the ones I got, I can step into them and they are cotton. Highly recommend to anyone going through a similar issue post-BMX! So I'm giving myself a kiss and rewarding myself for my effort by tucking into bed with a movie. Tanks are in the wash. (and no, don't worry, I didn't bring a load down in a basket from upstairs, I am committing an eco-crime by washing *just* the cami's!) I am bushed.

Thanks to my fabulous friend for ferrying me over there in the rain . . . mwah!

xo,

Sarah

Wednesday, October 12, 2011

Nipped & Tucked & Pooped

The Weeble is exhausted.

Quick update tonight: Saw my plastic surgeon this afternoon and she is unconcerned about the swelling. She said she'd be worried if it extended into the breasts (it doesn't, it's under my arms and down my sides a bit), or if I had a fever, it was hot to the touch, etc. This looks normal to her. It's worse on my left side because of the radiation I had 10 years ago - apparently it's harder for the fluid to absorb over there. So we'll watch it. She took a very careful look, felt it, and I'm seeing her next week again so she'll get another look.

Then she did a revision - just what it sounds like - she revised my surgery on the left side. I had a little bit of black along my scar on that side. If you remember, they went in through my old scar from my lumpectomies in '01. That skin was dead, and she was worried that it might not scab off and that the scar would open up at some point. Yuck. So she shot me up with lidocaine, cut out the black spot and stitched me up. The last time I was sutured while awake was when I was 13 and cut my chin open sledding. Still not a fan. No pain, just pulling and pressure and weirdness. At least I had the good sense not to look up at the lights, where I'd see my reflection. Then, I might've passed out. 20 minutes later I was out of the office, making a follow-up for next Wednesday. No fuss, no muss (let's hope - had so much fuss & muss that even her secretary was asking about The Rash).

I'm relieved about the swelling - between her and the lymphedema PT on Monday, this will be followed. My fingers are crossed that the revision takes - she thinks it'll be just fine; because this skin is over muscle now (my mighty mighty pec), it's got a good blood supply.

Now I need to set about finding a comfortable tank top with a shelf bra, STAT, because when I confessed that I was jettisoning my bra at night, she told me she wanted me in something, 24/7, for the next 4 weeks, most likely.

Suggestions? Bonus points for adjustable straps, wide straps and something made of cotton. Free overnight shipping or availability in Boston might get you a kiss. But not a hug.

xo,

Sarah

P.S. Editing this post to remind you guys that I need to be able to STEP INTO this camisole. Not glamourous. But necessary. No arms overhead! Low-fives, only . . . .

Tuesday, October 11, 2011

Clawing my way back to normal

You know it's bad when Suzy Sunshine checks outa here. Suzy was hating life for a stretch there and disappeared, but Suzy's coming back. And although Debbie Downer's taken up residence in Suzy's stead, I see her fixing to pack her bags, and I'm not sorry to see her go.

What's changed? Well, Sunday I phoned in a Bra 911 to a good friend. She took time out from her own family on one of the more gorgeous days of the year, on a long weekend, no less, to drive me to that bastion of frump and fit; Lady Grace Intimates. Some of you might not be familiar with LG. It's not where you go for sassy, sexy bras that impress, but these ladies know their stuff. I knew I needed a bra change, STAT. I looked up a few choices on the LG site and called their Waltham store to see what they had in stock. They had one that would work and could order the one I really wanted, so my Savior drove me across bumpy hill and dale to get relief.

Marlene met me - she was the one I'd spoken to on the phone, and by the number of times she called me "honey" and "dear" during our 5 minute conversation then, I knew I was going to be well taken care of. She is one of their certified post-mastectomy fitters. Calm, resolute, reassuring . . . well, you'd wanna hug her if you could hug anyone. She measured me up (still same size, even though I feel like a marshmallow, so that's reassuring) and whisked me off into a dressing room with a potential replacement bra.

So . . . so far, the only people who've seen my foobs are my docs, nurses, husband and daughter. There are many women who're open about showing their reconstructed breasts - I'm not one. I think that it's because I have my own outside parts, so really, aside from shape and size changes, these really still look like me. And as unabashed as I am about posting on the 'net about all this, I draw the line at flashing the goods. Anyway. It's hard to try a bra on without flashing the goods, so there was this brief awkward moment in the fitting room with Marlene, where I realize I'm going to have to get waist-up naked, and I said tentatively, "You want me to take this old bra off? You'll be able to fit me better." And she smiled gently and said, "I will. I do if you're OK with it." I said, "If you're not going to fall over backwards, I'm game," and she replies, "Honey, I've seen. it. all."

Off went the bra, hitched up into the new one I got, and we inspected the situation. This is the ugliest thing I've ever worn, but it's FAR more comfortable than anything I've worn post-BMX. Sold. She snapped off the tag so I could wear it home. She ordered up the super-comfy one I want and told me to make sure she or Roseanne, the other certified post-MX fitter was around when I came back to try that one. "We know what you're going through and we know how to fit you best." And how. By the way, Marlene is 3 years out from chemo for ovarian cancer (the "silent killer" it is a Varsity-level cancer). We knocked on wood together. She gets how shitty all this is. Makes me want to hug her more.

Anyway. The new bra has made me more comfortable the last few days. I still can't wear it to sleep - I'm too swollen for that, but my swelling has shifted and changed, so while I'm still quite uncomfortable, especially in the evenings and at night, I'm less afraid of lymphedema. I also sent out a distress email to my old lymphedema physical therapist, who emailed me back last night. She reassured me that there is a huge range of post-surgical swelling that's normal, but said yes, I should be checked out. I'm calling her secretary this a.m. to make an appointment.

And tomorrow is my follow up with the plastic surgeon. My intrepid husband is going to ferry me there. He's been on the front lines with this and between my list of questions, his sharp mind and ability to recall the progression of the swelling, we'll get to the bottom of this.

Today, I will rest more, and walk more. I'm finally feeling like I might have the energy to get into a book. Yesterday I watch a mindless but fun chick flick in the a.m. I am taking it easy, but have relished being able to do more for myself and my family. This morning, I got teary as I mixed Lilah's pasta with basil pesto and loaded it into her Thermos. I am clawing my way back to the mundane, everyday tasks of living, raising my daughter and caring for my family. It feels so. damn. good.

So I urge you all, today and in the days going forward, to take a minute to give thanks for what you've got. It can be trying, or boring, or downright awful to be you on any given day, but it could probably be worse. I know it could for me. So today, I'm giving thanks for small improvements, and for all the other things that are going so well in my life. Join me.

xo,

Sarah

Sunday, October 9, 2011

Free floating anxiety

It's 4:24 a.m. I was still awake at 11:30 p.m. last night, then again at around 3 a.m. this morning. I have been anxious, restless. I have been in pain.

The great thing about not having to see a doctor for a while after treatment, any kind of treatment for breast cancer, whether it's surgery or chemo or radiation, or some other form of intensive treatment is just that: you do not have to see a doctor for a while. And for anyone who's been on the doc circuit, you know how gratifying this is - you are free. Free! Schedule your life around YOU! It feels awesome, for a while.

The bad thing about not having to see a doctor for a while after treatment is that you don't have anyone checking up on you. You are cut loose. You've been through major medical, in some cases a life and death situation, and you are on. your. own. And when stuff changes, and things comes up, you're left to your own devices with your mind, and Doctor Google at your bedside.

Since last Wednesday night, I've had weird swelling. Pretty uncomfortable, painful swelling in a band around my upper chest. My once comfortable bra feels like a tourniquet, mostly at night. Wait - let's back up here - did you know that you have to wear a bra 24/7 after this surgery? You do. So that means while you're sleeping, and for you men out there, that may not make an impression, but I don't know many women who relish sleeping in a bra. Oh, and I think as an aside to my aside, I should mention that you also cannot sleep horizontally. Nope. I haven't slept lying down since I was knocked unconscious by general anesthesia on September 19th. Yes, that's right, you gotta be strapped in and at at least 45 degrees for comfort. Lately, I've preferred close to 90. Forget all about how I used to sleep on my side and stomach. That's a ways off, people. But I digress.

Back to my ever-expanding torso. The feeling is of a thick and tight Theraband being stretched around my chest, around under my arms to my back. The only thing I can point to that I did differently is that I bent over on Wednesday a few times - picking very light things off the floor. I am being honest when I say they were light. And if you noted my activity level - to a person who had not had a bilateral mastectomy with immediate reconstruction - it'd come across as minuscule. Ridiculous to even note. But apparently that level of activity can make one swell.

I know, because after it got worse on Wednesday night, and better Thursday morning, I called into my plastic surgeon's office and had one of her nurse practitioners call me. Jill said that I must've overdone it a bit on Wednesday and that all would likely be fine. You see, anytime you move around, your body creates more fluid, she explained. (Remember those drains? They took a ton of fluid out, and the docs did warn me I'd see an uptick in fluid if I moved around more). My body is getting used to having a foreign body implanted in it - sending more fluid to that area. I asked her if it was OK to remove my bra, and while she said they'd much prefer me to wear a bra, it was OK to take it off if I felt like it was cutting off my circulation. OK, makes sense. I wore my bra Thursday, and although the swelling got worse Thursday night, it was better again Friday. I decided not to call and to wait it out over the weekend. And now I'm worried.

One of the things that makes you a good litigator is the ability to think situations through to various end points. The ability to think of all case-scenarios for your client, good and bad, is an asset. Particularly the bad case-scenarios, because that's what they want to avoid, right? The ability to think of all case-scenarios, particularly the bad case-scenarios is NOT a great quality in a cancer patient, because when stuff starts to hit the fan, your mind is at that nasty Point B faster than a jackrabbit. So in the last 36 hours my mind has gone all kinds of scary places with this. And the swelling has increased since yesterday. My unscientific measurements (how badly I feel like my foobs might explode outa my body, the contour of the sides of my torso) say it's worse.

Now, I have been eating saltier foods. I had half of a delectable whitefish salad sandwich on Friday that could only do bad things to a girl who's retaining water. And ate the second half of that Saturday for breakfast. A little leftover pizza, a yogurt (neutral) and some fruit (good) for lunch, and then some takeout for Saturday dinner that under normal circumstances makes me feel like junk day 2. Not good on the diet front. You see, when I haven't recently had my breasts removed, I cook most all our food from scratch. Our sodium intake is LOW. We eat so little processed food, we can control it easily. So eating all this "foreign food" can only be compounding the swelling. Duly noted. Today, that's going to change for sure.

But what could it be? Well, as Dave has pointed out in desperation, it COULD be normal. (It might not be a surprise that I haven't been all that easy to live with this weekend.) I would be so excited if this pain were normal. If it's a part of the process I will delightedly suck it up and soldier on. But it also could be lymphedema, a chronic and painful condition that can occur after the channels that carry your lymph fluid are messed with: like say, having your breasts removed. It could also be the start of a painful and complicated bad surgical outcome called capsular contracture - where your body makes too much scar tissue around your implants and they get tight and stiff and they hurt and have to be removed. My fingers have been flying over the keyboard and Dr. Google has shown me all the nasties. I've sent out a few SOS emails to contacts I have from Breast Cancer Round I to get going on an eval for lymphedema. I should anyway. But it's the weekend.

Today is Sunday. My swelling is not reduced in the way that it was the last 2 mornings. I am awake early, determined to do one thing today: eat almost no salt. To drink a ton of water. To reduce what bloat I can. To do my part. And probably to meditate a bunch. Put my guided relaxation on an endless loop and plug in my ear buds. I'm paranoid. It's hard to stop. That follow-up Wednesday can't come soon enough.

xo,

Sarah


Wednesday, October 5, 2011

Taking the bitter with the sweet

Well, just when you're on a high, the smack-down comes. Today, I got taken down. By fatigue, a rumbly tummy, the sniffles. I don't know if all my fun of the last couple of days caught up to me, or if I'm fighting off a cold, or if somehow seasonal allergies have snuck through the double-doses of Allegra the allergist still has me on to fight The Rash. But today, I've been in bed. Wrapped in a fuzzy fleece robe with rainbows and peace signs and little Weebly-looking creatures that a friend made for me. Watching bad daytime t.v., feeling shitty, and feeling a wee bit sorry for myself.

As my mother-in-law darted around, tidying and helping with laundry, she imparted some good, firm bits of wisdom - I am ONLY two weeks and three days out of major surgery. No matter how good I might look, I need time to recover. It's as simple as that. Her diagnosis is "over-do." I hesitate to think she's right, but she has the wisdom of experience on her side. I've got nothin', and a bad over-doing track record to boot. I might well be guilty.

I have perked up since this a.m., and I attribute it to: 1) rest; 2) protein consumption; 3) a vat of hot-buttered popcorn I managed to make myself; and 4) my FIRST REAL SHOWER.

That's the sweet - but there is still bitter there, too. My drain holes are closed enough, says Doctor Dave. I'm still going to take my antibiotics for a few more days, just to be sure, but this afternoon, I needed to be clean. So I jettisoned the Shower Shirt and ventured in. I will admit to you, I was a little scared. Excited, but scared . . . what would the water feel like on my incisions? My abused upper-body? Well, the water on my back was delicious. All the fine scrubbing by a well-intentioned husband cannot replicate the feeling of the shower water, beating on your back.

But the incisions - this is where my "new normal" came rushing in. Because, well, I'm numb. Although I have pressure and weirdness and some swelling and zings and zaps from nerve regeneration, I am numb in a big band around my upper body. I look like I have all my parts, but they are not MY parts, and these replacement parts have no sensation. So when you ask me what it felt like to take a shower, I can say, "It was great not to hassle with the shower shirt!" or "I finally was able to soap myself up because I'm done with The Rash, and boy, did that feel fabulous." But there was some sadness there . . . because I'm not who I was. I never will be the same. And today it hit home more acutely than ever. One, because it was a down-day for me to start. And two, because I feel nothing on my upper body.

Yes! Yes! I hear you now: I am cancer-free. This was the right choice, the only choice for me. I have the best doctors, a great family, things are trending upwards and it's ALL GOOD. But anyone who's been through this knows that sometimes, you gotta have a little pity party. You need to acknowledge that it is hard, it hurts. It just sucks.

So today sorta sucked. I'm clean and my hair is washed, but there are still miles to walk before I'm "me" again. And that's OK. It's a process, I know. I'll get there. Today just felt like a "two steps back" kind of day. Hopefully tomorrow I'll move forward again. Somehow, I think I will.

xo,

Sarah

Tuesday, October 4, 2011

Walk around the block

Not a long post, but a significant post. I just came back from my very first outdoor walk since surgery. Around the block. In the sunshine and fresh air. It was transformative . . . not only because I was freed of the house, but because I miss, so much, the smell of the air, the feel of the sun, the freedom of moving my limbs . . . and because, well I CAN DO IT.

Let's flash-backward to my first walk after surgery. The morning after. Thank goodness Meredith, my slightly weird but incredibly friendly and knowledgeable night nurse with the strange Celtic tattoo, warned me what it'd be like. She said, "Tomorrow, they'll pull your catheter, and they'll want you to walk. And you will feel like you're 101 years old, and you'll be unsteady, and you won't be able to pick up your feet. You will shuffle. Day two is the worst - you will feel awful. But don't get discouraged, because day three, day three is when it all starts to tick up." Oh Meredith, I will never see you again (God willing), but I'm throwing thanks into the universe for that . . . the image of you, milking my catheter drain, giving me physical and psychological relief as you squatted beside my bed at 3 a.m., that's etched in my mind forever. I might've looked three-sheets, but I was taking notes.

One of the women on my breast cancer message board likened her walking the day after surgery to that of the "Old Man" character Tim Conway played on the Carol Burnett show (example here - and if I were cooking day two, I'd be slicing just like that). Between that hysterical image and Meredith, I was prepped. And it came true. Dave had to help me. I couldn't make it all the way down the hall. I needed to hold on to him, to the wall rail. I had to stop along the way. Along the what? The 40 foot way. I am a 7-day-a-week-exerciser. A heart-rate-monitor-wearing, calorie-torching machine. And I was in serious danger of falling over.

I kept at it, as I am wont to do, and worked myself up, 'til by discharge on day three, I could walk around the square that was the ICU/Burn/Plastics unit on the 13th floor at MGH (Taylor Swift's lucky number, and maybe mine now, too). But I was still weak, and tired. And itchy and greasy. Not yet ready for the big time. I was wheeled out in a wheelchair and home to bed.

But ladies and gentlemen, two weeks later and I'm pulling out. This old horse is out of her gate. And while I fully understand the limitations I'm under for the coming weeks (no heart rate up, no arm swinging, no repetitive motion, no lifting), in my mind, I'm flying . . . 'cause I can leave the house and ambulate around my pretty neighborhood. With real clothes and lace-up shoes, just like a big girl. These are my training wheel days . . . then'll come my two wheeler, then my motorcycle, then my big, friggin' jet-engine airplane.

Watch for me as I fly over - higher than ever. Six weeks, and I will be free, again!

xo,

Sarah

Saturday, October 1, 2011

Recklessness

I dunno what made me do it, but Dave went out to the market and I decided I was gonna shower, dammit. Maybe it was the fact that I woke up again last night, drenched in sweat (WHAT is causing this??). Maybe it was the fact that my hair hadn't been washed in 4 days (smarm-o-licious). Maybe I was just high from my tea-drinkin', yogurt-eatin' adventure at 5 a.m.? I went for it.

It was all going so well - still need to sponge-bathe because my drain incisions are not quite closed, so I did that, shaved the legs - at these tasks I am now a pro. It's not graceful or pretty, but between our trusty teak shower bench and the hand-held shower head thingy, I can get the job done.

But then I decided to get fancy.

I dried off my top, and suited up in my Shower Shirt - click on the hyperlink if you don't know what this thing is . . . basically a shortened, super-tight, waterproof windbreaker - complete with pink ribbon (ugh) that allows you to shower without getting your (upper-body) incisions wet. It's genius. I only wish I'd get more use out of it - but wait! don't get me wrong - I'm psyched to have my drains out so early.

Anyway. I get the shirt on, no problem, ratchet in the neck and away I go - bending over, washing MY OWN HAIR for the FIRST TIME IN WEEKS. Scrubbing my scalp, working up a lather, just like I like. I rinsed, and then I even conditioned. Oooh, I was feeling so good. Yes I can!!

I'm done, turn off the water, manage to wrap my hair up in my fav microfiber towel (faster drying for those of us with thick, long hair) and am feeling victorious. I'm tired, but still standing. Now I need to get the Shower Shirt off, dry off, get dressed, and probably take a nap. No problemo.

Oh, but there was a problemo - the zipper on the Shower Shirt broke. I'm alone. I'm struggling. I cannot get the damn thing unzipped. It's super tight - remember, this is supposed to keep water out . . . and between the the fact that someone has drunk the last 2 in my six-pack of abs and the tautness of the jacket, I'm straining to right the zipper.

I step out of the shower and yell hopefully, "Dave!!??" No answer. Not home yet. I briefly consider cutting the shower shirt off of my body with a pair of nail scissors. That seems tragic.

Finally, after much straining and a multitude of f-bombs, I got the zipper back on track and the shirt off. And then guess who gets home? Dave. He finds me red-faced, but triumphant.

Cheers to independence, however hard-fought! Now, time for that nap.

xo,

Sarah

Friday, September 30, 2011

Every day, a little progress

Lots and lots of excitement here in the last two weeks. It's finally settling down.

There was The Surgery, followed by The Rash, then The Discharge and after finally being home for the weekend, I had three appointments at MGH. One on Monday when I demanded to be seen by my plastic surgeon because The Rash was FAR worse than ever while I was in-patient, one Wednesday where we were fast-tracked into MGH Allergy Associates to deal with The Rash (seems I might be allergic to dilauded - a crazy strong pain med), and the last yesterday when I saw my plastic surgeon for a routine follow-up. It has been an exhausting week, but there is only good news to report. By far the best was Wednesday's call from Dr. S. with the "all clear" on the pathology, but I have also jettisoned all 4 surgical drains within only 10 days of surgery (awesomely fast, this can never happen fast enough - just ask anyone who's had the pleasure), and the rash is under control.

I'm still on lots of drugs, but none of them are coating me head-to-toe in fluorescent-red itchiness and hives. I'm still in need of two naps per day, but I can now functionally sponge-bathe and dress myself (losing 4 rubber tubes helps a lot with those logistics), and my surgical sites are healing up well. I will be allowed to take a for-real shower this weekend. There may be one little surgical tweak my plastic surgeon needs to do on Lefty in two weeks when I see her again, but it's an in-office procedure that's short - and here's the thing:

IT'S TWO WEEKS UNTIL I SEE A DOCTOR AGAIN.

It was getting bad - the valets at MGH were getting to know us. Now I have a little breathing room to rest more, start to see friends again (a good sign - I'm starting to get lonely for my peeps), and keep on healing. No lifting or exercising for me - I have strict instructions not to raise my heart rate or lift my arms for 6 weeks . . . so the jumping around in my basement and gym will have to wait. Instead I will revel in the fact that this has gone so well, that I am being taken care of so lovingly by family and friends (if you could see and smell the meals that are coming here each day!? they have been AMAZING), and start getting used to my new, new normal.

It'll be a process. My body is very different, even if you can't see a difference. It's a nice bonus that I can pass for normal: I came out with the same number of parts I went in with. But there is major repair going on in there, the body is busy, and sometimes my mind gets busy with the realization of all that's gone down in the past 12 days. But I'm taking it day by day now, rolling with what comes, doing the best I can. I am trying to view these next 6 weeks as a time for healing and nurturing - focusing on those instead of restrictions and limitations.

Because really folks, once I do my t-rex time here, arms at my sides, strolling instead of striding - I'm planning on taking off again - higher and faster and brighter and stronger than ever. 'Cause when you get your second lease on life, you don't wanna waste it, do you? You want to make every. single. day. count.

No regrets.

xo,

Sarah




Wednesday, September 28, 2011

Elation Nation

Friends. I am so pleased to report that I got "the call" from my lovely breast surgeon this morning, and I am CLEAN AND CLEAR of cancer. The in-situ cancer from the right breast was actually gone - apparently it was excised completely during the core-needle biopsy back at the end of May (rare). No cancer, anywhere, in either breast. There were, however, lots of high-grade funky pre-pre-cancerous cells in both breasts, which confirmed, as Dr. S. said "that this surgery was absolutely what we needed to do for you."

Exhalation.
Vindication.
Elation.
Tears of joy.
Sobbing, heaving, tears of relief.
An incredible sense of excitement.
Of promise.
Of being a just a normal mother again, of soccer games and birthday parties and proms and weddings. Of little everyday joys and pains-in-the-asses and everything else that makes up a rich life.

And no chemo. And no radiation and no horrible hormone therapy. Less screening. An amazingly low risk of recurrence.

I knew that the chances of there being a big surprise on the pathology were "remote" - my beloved Dr. Y, the oncologist, used that word. But you know what? The chances of my getting breast cancer at 32 were less than remote. And that happened. So I don't trust stats all that much, really. And I have seen too many women get the rug pulled out from under them, just when they thought they were doing great.

I've watched a few women die. Young women. Women I loved.

Not because they did anything wrong, were reckless, were careless, but just because they drew the short straw in the cancer game. So there but for the grace of God goes any one of us. I knew it could be me, but this time, thank goodness, it's not. I, once again, got lucky.

If I could wave my hands in the air, I would . . . but then my implants would migrate up to my chin. Instead, my heart's doing happy flip-flops and I am on the brink of tears as I listen to the delicious sounds of my beloved daughter reading aloud to me for her homework . . . just an ordinary afternoon, on one of the more extraordinary days of my life.

Take that, f-ing cancer. I hate you. I beat you twice. You better just quit messin' with me.

xo,

Sarah

Monday, September 26, 2011

The Itchy & Scratchy Show

So I was doing so great, my friends. Energy up, very very little pain, feeling excited about moving forward with life . . . but there's been this rash. It developed while I was in-patient, and no one could really figure out what was causing it. We switched meds, it stabilized, and I got discharged. I have been taking Benadryl every six hours, around the clock since last Thursday when I came home and it was holding steady . . . until yesterday. Yesterday, it flared like a beast, and today it's had me in tears. It is the most excruciating, uncomfortable feeling - I cannot get comfortable. If I could peel off my skin like a wetsuit, I would.

So, of course I called the docs first thing this a.m. My breast surgeon's team was dismissive, a la: "these things tend to get worse before they get better - please suck it up and don't call back." Bulldoggedly, I phoned up my plastics team, and they were more responsive. I had a 4 p.m. appointment and my PS at least made an effort to alleviate some of my issues. We got rid of the surgical bra. She removed the steri-strips. But here's the rub. What I really need to knock this thing out is prednisone. Prednisone, however, is bad for healing - and I've got a lot of healing to do. Most importantly, Lefty, the breast I had cancer in before, is on shaky ground - all docs think the implant will make it, that the skin and nipple will heal up and look very pretty, but it's very delicate because it was previously irradiated. I'm already a very lucky lady to even have it in good enough shape to perform this procedure in the first place.

So no prednisone for me. Same Benadryl routine. And what else? OTC hydrocortisone cream. More suffering.

I want this implant to succeed. I need to put my mind over matter right now and I need this to resolve and I need these breasts to heal. I'm not a prayer. Tonight, I wish I were. I think I'll try to meditate . . . to try to calm the little crawlies. Maybe ice the really bad parts. And try not to keep DI up all night in the process.

One piece of good news, though, so I'm not a total Debbie Downer tonight: While I was at the surgeon's office, I had 2 of 4 drains removed. And that, my friends, is a real relief. I think the other two will come out Thursday when I see my her again. So at least by end of week I'll look less freaky, even if I feel like crap.

xo,

Sarah

Friday, September 23, 2011

Home again, home again, jiggety-jig

The Weeble is back. She is banged up, bruised, heavily medicated, super itchy, slightly smelly, definitely greasy (her hair, that is), but hugely relieved to have one major step in this process completed.

I'm going to keep this short, because just walking to the bathroom tires me out - so typing and thinking is a major undertaking. There are so many things for me to write about from the last few days . . . that fateful ride to MGH early Monday a.m., the last-minute surgical surprises that awaited us, waking up in recovery, the vigorous advocating I sometimes had to do for myself, some freaky drug reactions and how I am no longer going to classify myself as a needle-phobe. I have learned more about myself in the last four days than I could've ever imagined. I knew I was strong before - but this experience my friends, was like spinach for Popeye.

But first, I want to thank you guys. I will sometime try to express the joy I received from reading each and every one of your well-wishes, comments and cheers while I was struggling to take it minute-by-minute in the hospital. I honestly thought of you all boosting me up when the going got tough. Maybe it seems like not all that much to shoot off an email, to post a comment on Facebook or to leave word on the blog - but you need to know that each one of those lifted me up in a way you cannot imagine. Your words, thoughts and prayers were like little wings that helped me fly me over whatever challenge I was facing at the moment.

And I also want to publicly shout out to my beloved, my oh! so beloved husband. These are the "for worse" times of marriage. This is our second go-'round with "for worse." My first diagnosis in November, 2001 came just one week before our first wedding anniversary. As we approach our 11th anniversary, DI remains my quiet rock, my coach, my most valuable player. We make such a good team because he is such a great man. Smart, supportive, loving, kind, and helpful - he is ready to jump in and do whatever needs to be done to make things go more smoothly. He will be mortified that I wrote this, so I'll stop now, but let's just say I'm more in love with him than ever. Despite the shitty health hand I've been dealt in life, in love, I've got a royal flush.

So, what's next? Spontaneous sleeping. Watching Ellen and Anderson Cooper and bad chick flicks on-demand. Maybe reading a book, although holding a book right now is still an undertaking. And a little more anxious waiting. You see, the fat lady hasn't sung yet my friends. Although my node was clear, the pathology from my breast tissue's not back. And until that gets sliced into wafer-thin, prosciutto-like slices and analyzed by the great minds in MGH pathology, there is still the chance that chemo or some other treatment might be indicated. My oncologist put the chances at "remote," but they are there, and I won't rest fully 'til I know.

But for now, I'll keep the worry at bay by taking more baby steps, bolstering myself with a million pillows, enjoying the fantastic food that's coming to my back door every day, and reveling in the comfort and love of my family and friends.

xo,

Sarah

Monday, September 19, 2011

Post Game Update

Hi Gang,
Dave here again. Thought this blog needs a little testosterone - so I'm sticking with the sports metaphor. Well, the game's over and Sarah's in the locker room. Sarah is awake, out of recovery and in her room. She's resting semi-comfortably, in a bit of pain but currently enjoying a brief high after recently being given a hit of pain killer in her IV a few minutes ago.

The reconstruction also went exactly according to plan - no problems with her prior radiated left side (which presented potential for complications). In fact, I peeked and she looks, well, like Sarah. Remarkable, given all that's happened today.

The team is exhausted, but victorious. Sarah 2, Cancer 0.

Halftime

Hi everyone - Dave here with your first update.

We arrived bright and early here at MGH at 6:30 AM. After a little bit of prep and a lot of waiting, Sarah's day of surgery actually started about 11:30. In this game, the really important plays happen in the first half and I just finished speaking with Sarah's breast surgeon, Dr. Smith. Everything went well and according to plan.

We were a bit surprised this morning to learn they planned to do bi-lateral lymph node biopsies to ensure nothing has spread beyond her breast tissue. Day of surgery surprises = not good, but we swallowed hard and decided to trust her surgeon whom we have tremendous faith in. The right side biopsy was negative (good news) and it turns out they decided it was un-necessary to do the left side - which was even better news since Sarah already has had a biopsy there and was concerned about implications of a second biopsy to her lymph nodes. So, I'm breathing a sigh of relief for both of us on these points.

As I write this, the halftime entertainment is over and Sarah's reconstruction has begun. That will take a couple of hours and then she'll be in recovery through dinnertime. I'll post again sometime later tonight to let you all know the final outcome.

Thanks for all of your support...
Dave

Thursday, September 15, 2011

The wishing well

Yowza. In 72 hours I will likely be rebuilt and ensconced in my room at MGH, alternately dozing and watching bad sit-coms. Can you believe it? Can I?

This was a good week for me. A tough week, but a necessary week. For the past few months, I've been strong and willful and did what I needed to do, and this week I let it fall apart for a while. I let my guard down. I felt my vulnerability again. I finished up all the logistics and prep and got really busy on the emotional side of this thing, and let me assure you, it was just what I needed. The time I've taken, the space I've gotten, the multitudinous marshmallows I've eaten - they've allowed me to reflect on Monday and get comfortable with the uncertainty. I let myself slip into the the dark places in the last few days, and now I've crawled back out. I've sat with the sadness, and now it's ebbing. I feel . . . so good.

You see, I've begun to be able to see past Monday. Until this week, I was all stopped up at Monday. There was no post-Monday. I mean, intellectually I knew there'd be a post-Monday, but emotionally I had no capacity to get there, to look forward to anything. But my work this week has flipped the switch, and I have an excited flutter in my chest. A touch of Christmas morning anticipation about what might be in store post-BMX. Narcotics? Yes! Rehabbing and boredom? Surely! But also good stuff: more positive life changes, stronger friendships, seeing things even more clearly for what they are, a refreshed zest for living.

Lookit: If you ask me about life post-Cancer Round I, I'll tell you it's WAY better than pre-cancer. For real. Controlling for all the worry and B.S. with doctors, screenings and perceived "medical emergencies," life post-cancer has been richer and more what I wanted than I could ever have imagined. I separated wheat from chaff. I threw caution to the wind and abandoned my chosen career. I adopted a daughter. I volunteered and advocated like crazy and then relaxed that and threw myself into homemaking. Who'd have EVER thought this girl would end up a happy hausfrau? I have loved. it. all. And now, finally, I'm certain that there's good stuff waiting for me post-Round II.

I guess you could say I'm at peace with the beast. Again.

So . . . a favor from you?

My surgery is scheduled for 10:00 a.m. Monday morning. Would you be so kind as to take a minute to send me a little mental mojo at that time? Whatever it is that you think will bring me strength: One friend is sending Reiki healing wishes. Another traditional prayer. Another a boisterous telepathic "kick ASS Sarah!" Whatever you find meaningful, to you, for me. I want to feel the energy of all my buddies rolling into the OR with me.

Hop on my stretcher, peeps - come along for a ride! Let's kick some cancer booty.

xo,

Sarah

Sunday, September 11, 2011

Coming off the rails

Here we are. The week before surgery. It's all about the pre-game now . . . domestic loose ends to be tied, physical preparations to be made (no more anti-inflammatories (goodbye, beloved Advil!), no more supplements, tapering down the workouts so my body isn't exhausted for surgery).

It's my last week with the original equipment, folks, and I'm left to wonder - what does one DO to mark a transition like this? I am feeling frustrated - I have the luxury of knowing that a big change is going to happen, and yet, am at a loss for how to mark or commemorate it for myself. It's not a celebrating kind of feeling, for me . . . as much as I want to be that cool and carefree gal who has a "foobulous" "ta-ta" to the breasts party, it's not something I'm feeling like I can make fun of. I'm not morose, either, just flummoxed and uncomfortable - and all that combined with fatigue and anxiety (they make a great couple, don't they?) are making me feel a little like I'm finally coming off the rails.

Tonight I'm going to shut the lights out on the situation - just crawl into bed with an USWeekly and try to sleep it off, but I have purposely scheduled some unscheduled time this week (reminds me of my favorite Chinese fortune cookie fortune "Plan to be spontaneous tomorrow") to be by myself, to think, to reflect on all of this. No background noise, no distractions. Maybe I'll pick up an old favorite in tough times, Pema Chodron's When Things Fall Apart or The Places That Scare You and breathe my way through it. I'm curious if I'll find comfort in anything this week, or if I'll just be in a bad place, waiting for the shoe to drop.

This too is part of the process - for me it's actually a bit of new ground. While I had new and exciting experiences during Cancer Round I (chemo, for example, I remember losing sleep (and then hair) over chemo), I have never had the (dis)pleasure of major surgery. These will be new lessons after a new dance with cancer . . . trusting my doctors, trusting my body, receiving help, letting things go. All great for the future, but tough in the present.

xo,

Sarah

Monday, September 5, 2011

Two Weeks

Two weeks from today, I will've kissed my daughter goodbye at 6 a.m., knowing I probably won't see her for over 24 hours. Two weeks from today, I'll be hooked up to an IV, getting fluids, clad in an unflattering johnny, probably freezing cold. Two weeks from today, at this time, it'll be about 2 hours until I have my breasts amputated in order to save myself (knock wood) from ever having to deal with breast cancer again. Two weeks from today, my life is going to change, forever, all over again.

As I've told many of you, I'm beyond ready. I was diagnosed June 6. I have known my surgery date since early July. I've had so much time to process and make decisions that I'm completely confident in what I'm doing and where I'm going from here. I'm chomping at the proverbial bit.

But as the date draws near and I check off other milestones (8th birthday celebrations, the start of school), my anxiety is amping up. As my "Mastectomy September '11" sisters on the Breastcancer.org board go for their surgeries, week by week, my blood pressure rises. Because even though I'm ready for my turn, I'm still worried, angry, anxious and sad. I do not want to have to do this. In my head, I'm stomping my feet like an angry toddler. Red in the face, crying, sweaty with conviction. If I humor myself, I can envision myself lying on the gurney, yelling all the way down the hall to the OR, "I don't wanna gooooooo!"

I'm consoling myself with the knowledge that there'll be a palpable sense of relief after my surgery is over. A big exhale. When I wake up after 6 hours of removing and replacing parts, I will finally have the golden opportunity to JUST. MOVE. FORWARD. instead of treading water in the "what might be." I've been treading water for 3 whole months. I'm pooped.

A friend described this time as "preparing for a long trip that you don't want to go on." She nailed it. I've been preparing for months for a forced march through cancerland. I hated it the first time around and the trip so far has sucked just as badly. But I'm also reminding myself that I'm lucky enough to get to come home after this trip. I know that each week after surgery, I'll get closer and closer to home: the place I find comfort, joy, hope and peace.

And I know that you can't come home if you don't go away. So away, I'll go.

xo,

Sarah




Saturday, August 27, 2011

The kindness of strangers

Breast cancer's a funny thing. Like any traumatic life event, it can make you feel so alone . . . I've talked about this before. You feel like no one could ever understand your anguish, contemplate the terrible choices you're asked to make, feel the terror of facing your own mortality.

But the cancer experience also has the amazing power to bring you closer to people and to connect you with others. It can restore your faith in humanity, while simultaneously calling into question your faith in your body, your deity, your reason for living. Life's a tricky bitch. Cancer's even trickier.

Being a connection-seeker, as soon as I was re-diagnosed, I jumped back on the message boards at the Young Survival Coalition (and as an aside, I'm please to announce they've redefined "young" to be under 45 . . . so I still make the cut) and also at BreastCancer.org. I sought out women who had had the surgery I was contemplating, posted to forums, and personally messaged a couple of people who had chosen saline implants.

One woman and I have been private-messaging back and forth consistently now for 2 months. She had the same surgery I'm going to have, with saline implants, and she's 3 months out now. She has spent inordinate time emailing me with support, exquisite detail and compassion about her reasons for choosing the procedure, how it went, what the recovery has been like, how her transition back to work has been, and most recently tonight, how things look after three months. And let me assure you, tonight I needed an email from her more than ever.

You see, yesterday I saw my plastic surgeon again, with courage screwed up to tell her I'd chosen saline implants. She was incredibly discouraging about my choice. She told me the cosmetic result would be "much worse" than if I chose silicone. She didn't sugar coat it. Didn't even offer up her best wishes for it turning out OK. She was clinical, and in her clinical opinion, the cosmetic results will be inferior. Period. And despite the fact that I'd been very certain of myself prior to our meeting, I came home deflated and worried. I did more research. I cried to and discussed the pros and cons at length with DI. And then I finally took an Ativan and went to bed.

But before I crashed, I also emailed this board-buddy of mine. And you know what she did? She took, my gosh, probably 1/2 hour for me tonight and detailed every lump, bump and gorgeous detail of her new foobs for me. She feels great about them. They. Are. Fine. Are they a substitute for the real thing? Perfect? No. But as she reminded me - after mastectomy, there is no substitute. There are only reasonable facsimiles. You've gotta choose your poison. And after reading her email, I am reassured that saline is the poison for me.

But aside from that reassurance she gifted me, she filled me up with a warmth that can only come from someone - a virtual stranger thousands of miles away, whom I will likely never meet in person - taking time out of her own stressful life to counsel a woman in the tortured throes of making a life-altering decision.

And that, my friends, is an affirmation of the goodness of people. I'm holding her with me next time I'm battling fellow Massholes in Boston rush-hour traffic, 'cause man, she's making me feel like a better person already. I mean, what do you say to someone who does something like that for you?

All I can think of is, thanks.

xo,

Sarah

Monday, August 15, 2011

The non-update update

Sigh. It's pouring. It's my last week of child-free-ness 'til September 7th. I have buckets of new clothes to go through - gotta decide what stays, what goes back. And all I really feel like doing is curling up with a good book . . . or, maybe, having a double mastectomy.

You read that right. I feel like having a BMX (not a bike, people, that's a bilateral mastectomy). I've gotten to the stage where I'm READY and RARING TO GO for this thing. I have 5 weeks left to wait, but if they called me this afternoon and said "you know, Mrs. Isenberg, we'd like to bring you in on Friday" I'd say "let me check my itinerary . . . um . . . alright!" 'cause I'm over anticipating, planning and preparing. I'm over worrying about any little thing that might go wrong. I just need to live this thing and see what happens for me, you know?

It happened during Cancer Round I, too. It's an official stage in the cancer game. Then it was chemo that I was really dreaded. I had the B-movie chemo experience in my head, and had read too much on the 'net. I was getting the "red devil" pumped into my veins and I envisioned myself on the bathroom floor, the whole in-front-of-the-toilet kinda thing. For hours. Puking guts out. I was so nervous about it that I felt sick to my stomach just thinking about it. But I had a start date, December 12, 2001, and as the day drew near I got more and more anxious to play ball . . . just hook me up to that IV, dammit! And you know what? I never, ever puked. Zofran is my friend. I could feel bad things going on in my gut, and I was wiped, but I never, ever puked.

So let's play, Mr. Cancer. Let's rendezvous at my home-away-from-home, ye olde MGH. Let's see what you've done this time. Let's implant those sacks of water and rebuild the machine. Let's lay low, take precautions, play by the rules for a while. 'Cause you know what? Once I'm done with all this mishigas I'm going back to kickin' ass and takin' names. You've held me back for far too long, already, you bastard.

xo,

Sarah


Thursday, August 4, 2011

Shopping and other weirdness

Remember how I said I'm getting things done? Preparing mentally and physically? It's going OK. I literally spent the entire afternoon yesterday at the mall, on the hunt for button-front shirts. Why, you ask? Because after you get a double mastectomy with immediate reconstruction via implants YOU CANNOT RAISE YOUR ARMS ABOVE YOUR HEAD FOR FOREVAH. Or at least that's what it seems like. In reality it's probably 6 weeks. So no cute little t-shirts and tanks for the Sarester. Nope. Relegated to buttoning and zipping for a while.

I found some suitable items, but I've come to the conclusion that I'm not a huge button-front shirt fan. Too frumpy, too preppy, too boho, to BIG (although at first, big's gonna be my friend, so I've gotten a couple "boyfriend" shirts for that. Why not use an old shirt of DI's, you ask? 'Cause good ol' DI is nearly a foot taller than me and much broader chested. I look like a preschooler at dress-up time wearing his clothes. I'm already going to feel freakish immediately post-surgery, I don't want to add to it.)

What else have I gotten? Well, two camis that you can step into. They exist - and these are super-soft all-cotton and have pockets to hold your drains. Thow on a cute hoodie or an oversized shirt and shazam! you're presentable. I have gotten a velcro belt w/little pockets that attach for those times when I want to tote drains w/o a cami. In yesterday's mail arrived my "pink pockets" - adhesive-backed fabric pockets to put into garments to hold drains, and also my custom-made hospital gown (a thoughtful gift from a friend). I've also invested in a "shower shirt" so that I can bathe more comfortably in those weeks while I still have the drains. That thing is pure genius. And now DI won't have to fashion me a getup out of a trash bag and duct tape . . . the man is amazing at covering incision sites (Lord knows, he's had practice), but he's going to have enough on his plate, don't you think?

It's all so odd, running around town and traveling the interweb for tools to use when your breasts are removed . . . and then there's the more weirdness in the interaction with people that are more tangential to your life at a time like this. Or lack thereof. I haven't broached the subject with certain people - how to bring this up with your housekeeper? My painter? The carpenter who's building us a new bookcase - I wonder what he thought when I told him he wouldn't be allowed in my house for the last 2 weeks of September after I had "major surgery?" What'd the woman at J.Jill think when I bought 5 button-front shirts? Did she even notice? What did the librarian suppose when I checked out 4 mastectomy "mammoirs" this morning? And let's not ignore the fact that I flat-out lied to my former neighbor earlier today when I stopped to say hello: he asked me how everything was and I said "fine!" and smiled. Somehow, getting into the specifics of what's about to happen with a 65-year-old Greek undertaker just wasn't for me today. I'll burn for that one, I'm sure.

I'm in a funky netherworld . . . the pre-treatment netherworld that all cancer patients understand. You've got the blueprint for what's going to go down, but the specifics are sketchy. You're continuing about your business, and no one outside the inner circle is any the wiser. But you know what? It also feels kinda good in a way, and that's even weirder. For now, I'm "normal," and by getting my ducks in a row, I'm calming some of those pre-surgical fears . . . and that, my friends, is a very good thing.

xo,

Sarah