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 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.



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."

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.



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.



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.



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.


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...

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.



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.



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 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.