Monday, September 10, 2012

Good Tunes

This morning, my internal wake up call came earlier than usual (3:45) so I tried to stay in bed and fall back asleep, at least until my new norm of 4:30. When that proved impossible, I took my seat at my computer. But I don't feel like writing much today. I have a busy day ahead -- after dropping the kids off for their first full day at school, I'll head into a 9 o'clock psych appointment at Dana Farber, then into work for the day for a few meetings (really, I just miss people there desperately and grasped at a few good excuses to venture into the office).    

So instead of writing, I've been up for a few hours watching YouTube videos and reading the lyrics of  songs that you have shared with me over the past few weeks. I've always loved belting out a tune in the shower or in my car, and my kids are used to me breaking out in ridiculous song and dance every now and then (at age four, Teddy is already embarrassed by me -- I love it!), but I never knew the real therapy that music can provide until now. Since my "Rocking and Rolling" post, I find myself listening to the songs you sent and reading (and re-reading) the powerful lyrics. Different songs have helped me through different moments. Thank you for those gifts. 

This morning, I came across a few videos in particular that capture my emotions at this early hour, just two days away from my surgery, and one day away from the anniversary of September 11th. I've pulled out a few of my favorite lyrics from each one below.  No matter how many times I hear these songs, they mean something more to me every time.  

"The Heart of Life"
John Mayer


Pain throws your heart to the ground
Love turns the whole thing around
No it won't all go the way it should
But I know the heart of life is good

You know, it's nothing new
Bad news never had good timing
Then, circle of your friends
Will defend the silver lining


"The Rising" 
Bruce Springsteen & the E Street Band


Can't see nothin' in front of me
Can't see nothin' coming up behind
I make my way through this darkness
I can't feel nothing but this chain that binds me
Lost track of how far I've gone
How far I've gone, how high I've climbed
On my back's a sixty pound stone
On my shoulder a half mile line

Come on up for the rising
Com on up, lay your hands in mine
Come on up for the rising
Come on up for the rising tonight

Sunday, September 9, 2012

My Other Half, and His

This is the first entry I am writing without knowing if I will ever post it. When Brian wakes up, I’ll ask him to read it, and if he’s OK with it, I’ll hit publish. If not, it will stay on my computer, still having given me the therapy that I needed this morning.

Last night, for the first time since I was diagnosed, I fell asleep bawling my eyes out in my husband’s arms. I actually don’t even remember falling asleep. I just remember the crying – the uncontrollable, could-barely-catch-my-breath-crying, as the rain pounded on the air-conditioner outside of our bedroom window. Brian just held me. It was dark (and I didn’t have my contacts in) so I couldn’t see if he was crying too. But he just let me cry, telling me I should cry, I should let it out, I have every right to feel the way I do. That he loves me. And I just kept telling him that I love him so much. Because I do, which is exactly what makes this whole process so scary, and so absolutely necessary at the same time.

When I woke up this morning, I had no idea what I would write about. When I saw the collection of tissues by my bed and remembered last night, I decided to write about my husband. But certainly there’s no blog or book or song or poem that I could write about Brian to do him justice. In fact, between that last sentence and this one, I have sat here for 45 minutes brainstorming how I could best describe my husband. I’ve come up with so many ideas, although almost every one keeps coming back to the same theme – that while everyone who meets Brian knows that he’s something special, they still only see a small portion of how incredible he really is.

For instance, the outpouring of support from the hockey community in the last few weeks has been nothing short of amazing, and I know it’s because Brian is such an exceptional coach. I have to admit, I know very little about hockey. I spend most of my time at Brian’s games chasing my children around the rink, buying Gatorades and pizza, taking Teddy to pee at the most inconvenient times, fetching mittens and pucks from under the bleachers, and hoping that the red light behind the other team’s goal lights up. Nonetheless, I’ve picked up clues along the way that Brian is really good at what he does (and I have no shame in bragging about it!). One clue came when the Boston Globe named him Division 2 Coach of the Year after his team won the state championship in 2010. No doubt I was overflowing with pride for my husband when the team won that year. But whoever at the Globe picked him for that award did it without knowing anything, or at least very little, about how much he really deserved it. I knew, however, that even if Canton hadn’t won a game that year, Brian deserved Coach of the Year recognition. Let me explain.

I remember the pride that I felt for my husband as I watched his team celebrate on the ice at the Garden back in 2010. I remember the music, the ice angels, and the kids throwing their equipment in the air as I tried to make sure Teddy (who was two at the time) didn’t tumble down the numbered stairs. Like any loyal fan, I secretly kept my eye on the one I cared for most, and so I watched Brian shake hands, hug his players, and admire their medals. I watched him beaming at the achievement for which he had worked so hard, even through his calm, cool, and collected manner (that is sometimes a rare sight in the hockey rink). As the kids headed for the locker room and the ice started to clear, I noticed Brian pacing back and forth, clearly looking for someone in the stands. He already saw us, so I immediately knew he was looking for Scotty’s family. Scott Herr, who played for Brian the year prior when that team set the stage for the 2010 championship by reaching the State Finals, was killed in a tragic car accident just months before this championship game. I knew right away that Brian was not going to leave the ice before he saw them. When he did, he took out a puck from his jacket pocket that he’d held there since Scotty’s passing. It had a white round #5 on it. Brian held that puck up for Scotty’s family to see. It was his way of saying more than words could express – that Brian knew Scotty helped them earn that win, that Brian’s inspiration that year and every year after would be from Scotty and his family, and most of all, that Brian would give up that win and every single other win for Scotty to be there with them now. Maybe only Scott’s family and I caught that moment. But that is the moment that convinced me there is no better hockey coach than my husband. Because no one could possibly care more about the well being of his players and their families than he does.

I could write about thousands of other examples, and you’re probably desperate for others that won’t leave you in tears (sorry, my teary disposition is contagious these days). I could talk about how Brian’s as good of a teacher as he is a coach. I could go on and on about Brian as a Dad.

But finally, I want to talk about Brian as my husband.

I’ve yet to write about Brian and my meeting with the fertility doctor, which took place only a few days after I was diagnosed. My oncologist referred us to this specialist to talk about our options if we wanted to have another biological child. To make a long story short, we were told that my reproductive system is going to weather quite a storm with the cancer treatment. As I’ve mentioned before, I will take Tamoxifen for five years after all of my other treatment is complete, and Dr. Bunnell said I should definitely not get pregnant while on that drug. That means that if all goes well, I will be around 38 years old when my treatment is complete. Teddy will be ten and Annabel will be seven. The doctor explained that there’s a chance I could get pregnant at that time (essentially, if my eggs have been able to survive the storm) but it could prove to be difficult. (And truthfully, it terrifies me to think that the hormonal changes in my body during my pregnancies could have contributed to my cancer growth, but that's me pretending to be doctor again.) So the real doctor casually (far too casually in my mind), explained our best option – right after my upcoming surgery, I would take some hormones, she would extract my eggs in a small surgical procedure, and with Brian’s help (I’ll spare poor Brian a joke about the specimen cup they gave him as a souvenir), a team at the Brigham would make embryos. They’d freeze the embryos, store them (offsite after 3 years), and when we were ready, we could choose a surrogate mother to carry our child. Gulp. Deep breath. Keep breathing.  

It was an awful lot to hear in the span of a few days that I had cancer, that I could have passed a mutated gene onto my children, and that we’d have to start planning now if we wanted other biological children. But there we were, with all of that shit piled on our plate, sitting in a windowless office of the fertility doctor, holding hands and wanting to disappear.

Needless to say, we both thought that meeting with the fertility doctor felt like torture. Luckily, we left that appointment with four tickets to the Boss waiting at Fenway's Will Call. I’ve already written about that concert and the spirit that I felt through the music that night. But I didn’t tell you about how I fell in love with him (my husband, not Bruce, well, OK, maybe both of them) all over again that night.

Since Annabel was born, I have thought about adopting our third child. Every few months, I casually ran the idea by Brian. Brian’s a thinker and a doer, not so much a talker, so I knew that his limited response to my idea meant he was undecided. I completely understood, and didn’t feel any need to pressure him.

As we held hands walking from the Brigham to Fenway, we talked about that terrible appointment. I told Brian that I had a bad feeling about the process the doctor had described, especially the part about injecting me with hormones while my body was recovering from surgery and preparing for chemotherapy. While I am so grateful that these options are available, and so thrilled that I have seen them work so well for parents desperate for children, they didn’t feel right for me. It was just my own instinct talking again, no science or logic or judgment on anyone who goes that route.

I had no idea how Brian would respond. He’s talked about having other biological children, so I knew that appointment could have crushed him. But he didn’t sound crushed at all. Instead, he assured me that we would never do anything that could possibly hurt me. He agreed it didn’t feel right for us. He told me he loved me. After we climbed the ramps to our seat level, we stopped, the over-priced snack bar on one side and the Boston skyline on the other.  And naturally, calmly, and confidently, Brian told me that he would love to adopt a child when all of this is in our past. Like has happened so many times as I try to gather my thoughts here, words can’t express the emotion of that moment – the overwhelming love, loyalty, and hope that Brian gave to me when I needed it most.

My husband is truly an amazing guy and everyone knows it. But they don’t even know the half of it, which is what makes me the luckiest woman in the world. Because I do.

***

Also, I thought this Dr. Martin Luther King, Jr. quote was a great one for this post:

The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.

Saturday, September 8, 2012

A Thousand Words


Late Wednesday night, my Aunt Helen and cousin Kirsten again made the trek from New Jersey to our house so that they could help out on Thursday, that day I spent at the hospital (and described in yesterday's post). While Annabel snuggled at home with Auntie Lauren, Helen and Kirsten took Teddy on a day of nonstop adventure, including bowling (Teddy claims, and documents show, he won by one stroke), McDonald's, and the bead store. Between my doctors appointments, my Mom and I laughed at the adorable photos that Kirsten texted us. At first, this one was my first favorite, although I had to gulp at the realization that my son is already wearing a size 12 shoe.  


Then when this photo came in, it was my favorite. Not only because I love that Teddy insisted on wearing his Jacoby Ellsbury shirt backwards so that "the number was in the front," but because I love that this kid had so much fun at the bead store, when we haven't been able to pull him away from baseball, hockey, golf, basketball, or soccer all summer. Most of all, I love this photo because it's my son spending a day with my aunt and my cousin, and loving every moment of it.  


When we got home, Brianne came over and with Kirsten and Brianne together, things start to feel like a party. (Of course we were missing Rachel but she arrived last night and I always wake up happier knowing she's in town.) 

Around dinner time, my dear friend from law school arrived. Somehow in addition to her career as an attorney, Jennifer found time to start her own photography business. When she heard about my diagnosis, she asked me if I would like her to shoot some family photos as a gift I could enjoy as I carried out my treatment. Jennifer is just the kind of positive energy I want around me so a visit from her is welcome any time, but a photo shoot sounded interesting. I had seen her excellent work and remembered that I have two, maybe three photos of all four of us from this year, so I jumped at the offer. Then I upped the ante -- I asked her if she'd be interested in documenting this journey in photographs. I was thrilled when she agreed. So as I continue through my treatment and towards my goal of total recovery, I will post photos by this most talented woman. This is the first installment of a few that I wanted to share. 

When I first thought about these photos, I tagged them the "Before" shots. You know, before a plastic surgeon remakes parts of my body, before my hair falls out, before the chemo ages me. But now as I really think about it, I don't like that term. These photos are me, my family, my friends, on our life journey, not exactly before or after any one thing. Of course, there will be a huge milestone on that journey - when I become cancer-free - but our journey has included and will include other great milestones, many of them long after cancer. It'd be silly to boil these precious photos down to "Befores" and "Afters" (as much as I love those on make-over and home remodeling shows). It'd be better to boil them down to what they really are - snapshots of a precious night with some of my family and friends.  

So, on a blog mostly shaped by words, this one is about photos. Photos that really do tell more than I could ever write.  

Brian, taking a few moments for a kiss before returning to the
kitchen to make us all dinner. (Seriously, I snagged a keeper.) 

Aunt Helen, Kirsten, me, and my Mom
Brianne and me with the kiddos


Auntie Woof and Uncle Seamus

Bedtime

Friday, September 7, 2012

Fresh Air

In a previous post (“Holding Pattern”) I compared the agony of waiting for my surgery to being stuck on a plane that’s stalled on a runway. Every morning I wake up with that feeling of anxiety, fear, and helplessness that I’d imagine passengers on such a plane would feel. Then every morning when I start to write, the feeling subsides a bit, especially when I can write about something wonderful. This morning, I can most certainly do that, because yesterday was a good day. Correct that, it was a great day, and I didn’t know such days were possible when stuck in this holding pattern.

Yesterday, after Annabel’s second transition day (which, as expected, included some hysterical tears, by her, not me for once), my Mom and I headed into Faulkner for two pre-op appointments. There we got a preview of September 12th – we saw where I will check in, where my family will wait, and the floor on which I will recover. A kind nurse took down my entire medical history and explained to me a bit about the anesthesia process. She told me that they have several strategies to combat the severe nausea that I experienced with my past surgeries, including some patch they’ll put on my neck. Good news, because I wasn’t looking forward to following up surgery with a few days of feeling like I have the flu. The nurse also calmed my fears about what I have somehow created as the worst moment of that day – being wheeled away from my family (although I can listen to music and am making my “Kick the Shit Out of Cancer” playlist this weekend thanks to all of you). More good news that the anesthesiologists can pump me with enough sedatives that I won’t even know we’ve gone wheels up on the gurney. Ah, modern medicine. And I used to resist taking two Tylenol…How far I’ve come!

I also took the liberty of clarifying in my first appointment that I finally decided on the double mastectomy with reconstruction. The nurse wrote something on a Post-It note, and typed something into her computer. I envisioned the little Post-It losing its (usually very reliable) grip and flying off a stack of papers only to be trampled by hospital foot traffic. I remembered those times at work that I forgot to save my document correctly. My internal voice reared its ugly head. What if I wake up from surgery and one boob is still there? Shut up, you idiot, I told myself, These people know what they’re doing. Later I joked with my family that maybe I should just write with a permanent marker on my stomach, “Please remove both boobs and all cancer (smiley face),” just to be sure. Could I be any worse at giving up control, even to professionals at the top of their field? (Note to self to continue to work on that daunting personal weakness.)

Next we met with the nurse practitioner who taught us about the surgical procedure and the recovery. She showed us the “drains” I had heard so much about. Here’s a photo of one of them. Not at all as scary as I had envisioned.

Dr. Chun (my plastic surgeon) will stitch the long tubes into my chest (two on each side) and I will have the pleasure of watching blood and fluid collect in the little bulb for a week or so after the surgery. The nurse also gave me a special shirt to wear that has little pockets for the bulbs to sit in. Sexy. About as sexy as the blue pee I will experience for a few days after the surgery, thanks to the dye they will inject into my body to try to see which lymph nodes may contain cancer cells. I’m very thankful for the blue pee warning – forget cancer, I’d be dead of a heart attack without that heads up.

After the teach appointment, we followed instructions and headed to Dr. Chun’s office to confirm my decision for reconstruction. A quick over-the-phone conversation in the reception area with Dr. Chun’s assistant clarified that yes, Dr. Chun should go ahead and insert those tissue expanders to build me some boobs. Then I stopped for blood work, which has become as normal as saying my own birthday. Oh, and by the way, if you happen to see me and the first thing I say to you is “3-10-1980,” please forgive me…it’s my new “hello” in the clinical world.

In the end, these two appointments may sound mundane, and in many ways they were, which is why they were so great for me. I ended up feeling like a double mastectomy with reconstruction is an ordinary procedure within those walls, a surgery done thousands of times before, and one that a world class team will complete again on September 12th with great success.

But something far more remarkable happened for me at the hospital yesterday. My path crossed the paths of three most incredible women. The first, I bumped into in the cafeteria as I tried to fill my nervous stomach before my first appointment. I met Kathy years ago when Brian coached her oldest son. This season, Kathy’s youngest son will suit up for Brian, and I’ll get the pleasure of seeing Kathy and her husband at all of the games. Kathy works at the Faulkner with patients just like me. A few weeks ago when Brian and I were floundering for hope, we visited her house and she steadied us. As we sat by her gorgeous pool (that her husband built…Brian, did you hear that?), Kathy reassured me of the gold standard quality of my team, both as skilled surgeons and as people. But seeing her yesterday in her scrubs, in her element, gave me a peace she’ll never know. She hugged me, I introduced her to my Mom, and she reassured us that my family will be taken care of while I’m in surgery. Nothing means more to me than that.

The second woman, I saw through the glass of the waiting room at a rare moment that I happened to glance up. Dr. Nakhlis (remember her? my breast surgeon...) was walking by in her scrubs and surgical cap and also happened to glance my way at just the right moment. I cry just remembering the look on her face. It was a look of recognition. She knew me. Me, one of her thousands of patients. Me, who she only met once before. Dr. Nakhlis didn’t hesitate for a moment; she just strolled into the waiting room to see me. She hugged me. She smiled. She looked me in the eye. She remarked on the great news that my genetic test came back negative (although I need to call today to see why I haven’t heard about that final 5%). She said she was excited to see me next week and that she’d take great care of me. I told her I had decided on the double and she nodded, “That’s great, I completely understand.” I felt as if I was talking to a celebrity that I revere (Oprah?) – I was so honored to have Dr. Nakhlis’s time and attention that I could barely get any other words out. I think I just said, Thank you, ten times or more, trying to fight back my tears of appreciation.

I honestly don’t think Dr. Nakhlis could ever understand what it meant to me for her to recognize me through the waiting room glass, and to come in to say hello. I can barely articulate it through my blubbering tears as I sit here trying to explain it. All I can say is that with that one quick stop on her path through the hallways, perhaps even between surgeries for women just like me, she convinced me that she will make me better, because she actually cares that I get better.

Lastly, as if a higher being set up an angel for me at every juncture, I met Carole in the front entrance as we were leaving. I tutored Carole’s son (now a teacher!) years ago and Carole reached out to me when she heard my news. Carole also works at Faulkner, and I know that every patient or person who crosses her path is better because of it. Carole climbed this formidable mountain years ago so she has felt my fears. And through the calmness and confidence of her voice, and her thoughtful words, she eases those fears. Carole asked my Mom how she was doing and how Brian was doing, which was all I needed to hear to know with absolute certainty that while the best people care for me next week, the best people will also be caring for my family. Carole also told me that we would celebrate every step of this journey. We sure will, and it’s going to be one hell of a party (much better than what I previously considered a party, which was Chinese food with Brian and our favorite TV shows).

There comes the sun rising again, another day closer to my cure. I have so much more to write about yesterday…I haven’t even touched on the angels that were waiting for me at home, but much more about them tomorrow.

For now, I’ll take a deep breath and appreciate the gifts I was given yesterday. Because yesterday, the exceptional women I have described here – my pilots, my flight crew – flung open the windows of my stalled plane and let in fresh, cool air. They peeled my frightened hands from the arm rests, steadied my shaky steps, and led me to the cockpit for a quick peek into the future. From that big window at the front of the plane, I saw the flight pattern, I saw blue sky. I felt a breeze from Orlando, and Maine, and all of the other destinations I will reach one day. And I let these women convince me that it’s going to be a fine ride.

Thursday, September 6, 2012

Phasing In

Last spring, Teddy and I got talking about something to do with science. I asked him, “Do you think maybe you’ll be a scientist one day?”

“My teacher told me I already am a scientist,” he replied, with that “Duh, Mom,” look on his face. “Right, of course you are,” I backtracked.

Teddy goes to a small Montessori school that I could only describe as beyond exceptional, mainly because his teachers (some of the most dedicated and wonderful ones I’ve ever met) have convinced him that he really is a scientist, an author, an artist, a cartographer, you name it. Granted, I often find myself unloading crumpled drawings from his school bag and flipping them around in all directions as I try to discern what I’m looking at, but he knows exactly what it is and he’s proud of it, so obviously, I am too.

Yesterday was Annabel’s first day at “Teddy’s school” (as we’ve been calling it to convince her it’s great). (Teddy first learned it as, “Uncle Sean’s school,” since Sean went there when he was Teddy’s age…they even had the same teachers!). It was emotional for me, as somehow everything is these days. But it was awesome. As part of the phase in process, it was a very short day -- the parents stayed for a half hour in the classroom as the kids began to explore their new environment at their own pace. In that half hour, I watched Annabel transform from clinging to my lap in tears, refusing to even look at another human being, to yelling, “Bye-bye Mama,” as I pretended I was leaving in my failed effort to try to persuade her to ditch the structure she was climbing on and come with me. (Sorry Dr. Montessori, in the end, I had to scoop up my flailing and screaming daughter to get her out of there.) This Monday will be Annabel's first full day at school, and I’m not convinced the ultimate transition will be that easy, but I feel enormous relief that she will be in the best hands, and right next door to Teddy, while I begin my recovery.

Then, of course, I had another doctor’s appointment. This was with my primary care physician. It was a pre-operative screening appointment, which seemed kind of strange to me. I’d sure be shit up the creek without a paddle if I turned out to be too unhealthy for a surgery to remove my cancer, now wouldn’t I?  So no surprise, I was terrified for this appointment. My most imaginative mind had created swollen glands, under-arm tumors, and, as embarrassed as I am to admit it, even M.S. (yes, when I watched Ann Romney talk about her breast cancer and M.S., I decided my sore back was due to M.S.). (This is why when Dr. Funt asked me if my Ativan was working I paused and laughed. “Well, I went on the Ativan when I found out I had cancer, so we’ve got a big variable to account for, don’t we?” I replied. Blank stare. Silence. You know the bit.)

Shaking and freezing cold on the white-papered patient table, I somehow found the courage to ask my doctor about my biggest fear of all – why my tumor feels different since I first felt it. I have only touched the lump three times since I was diagnosed, but each time I did, my heart sunk because it felt different – harder, stronger. Was it gaining on me as I waited helplessly to attack it? And as I’ve written before, I’ve felt pain in that area. In my dark moments, these facts have haunted me. Which is why it would have been helpful to know that the hardness I was feeling was scar tissue. My doctor explained that it’s normal after a biopsy (especially since the radiologist took so many slices of the tumor) to have scarring and discomfort there. Ah ha. That makes sense. I breathed a huge sigh of relief.

Anyways, as it turns out, according to the stethoscope, the blood pressure machine, a light shone in my eyes, ears, and mouth, some tapping on my back, and some feeling all over my back and neck, I’m healthy, except for that pesky cancer, of course. My doctor talked to me about going on an anti-depressant as I continue through my treatment (apparently Ativan is more of a temporary thing). She suggested Zoloft and I asked her a lot of questions about it. Would it affect my personality? Would I be tired? What are the side effects? Ultimately, she sent a prescription into CVS for me, and although I will pick it up, I think I’ll hold off on taking it for now. It’s just another part of the transition, I guess. Before cancer, if I had a headache, I’d drink a glass of water instead of taking Tylenol. But I think those days are past me and if I’ve got chemo cocktails running through my veins, I should probably just buck up on the Zoloft. We’ll see.

The sun is now rising and my countdown continues. Today, after Annabel’s short morning at school, my new workday begins again. My Mom and I will commute in to Faulkner to meet with the anesthesiologists and then with the nurse practitioner for what the clinicians keep calling my “teach appointments.” I think they’re going to teach me about what I’m in for next week. Fun times. Brian, who is so desperate to join, will stay with his students, as I hoped he would, to get them settled and comfortable so that he can take time with me next week.

As I sign off, it hits me – this time next week, I will wake up at Faulkner Hospital without my breasts, minus some lymph nodes, and free of my cancerous tumor. Sure, some cancer cells may linger, but I trust that the chemo, the Herceptin, and whatever else they need to throw at me will catch all that. And I’ll begin my road to recovery. From a disease that will forever be so mysterious to me, because I never even felt sick.

***

P.S.  For those of you who haven't signed up for A Word A Day, today's word is "winner's circle" and Mr. Garg's Thought for Today is:  "We should tackle reality in a slightly jokey way, otherwise we miss its point." -- Lawrence Durrell, novelist, poet, and playwright (1912-1990).

Perfect.