Thursday, June 30, 2011

JAY LENO

It's almost time for my bilateral mastectomy. (It's not often a girl gets to say that.) So how the heck am I supposed to stop my mind from going there (wherever "there" is)? And how do I keep calm when I know in a matter of hours my boobs will be removed, along with the cancer that resides in the right one?

I know this sounds counter-intuitive, but if you're like me, you go to a Jay Leno taping. 'Cause there's nothing quite like the healing power of humor.

My sister got Leno tickets several months ago — way before she knew I had cancer. The fact that the show date happens to fall 14 hours before my surgery is, as you can imagine, initially very stress inducing. How can I sit still in a chilly television studio with several hundred strangers and watch Jay Leno make jokes the night before I'm going under the knife? Shouldn't I be at home resting or worrying or not eating or drinking or something?

Wait a minute. This may actually be a brilliant idea. I mean, it's not like I'm going to get a good night's sleep anyway; I'll be wired for sound and the Zzzz's will be fleeting. Plus, I have to be at the hospital really early — 5AM. (That means getting up at 4AM.) There's no reason I shouldn't at least try to forget my troubles, right? I'll have plenty of time post-surgery to lay in bed and worry.

So off to the taping I go (sister and mother in tow).

We spend all afternoon (and part of the early evening) at NBC Studios. We actively participate in a pre-show crowd warmup. I even toy with the idea of telling the studio audience that I'm about to have a double mastectomy and this is the last outing my real boobs will ever have. But I chicken out and settle for a CD of that night's musical guest instead. (Turns out cheering really loudly wins you free stuff.)

Before the actual taping begins, Leno walks out to greet us in his street garb — jeans and a T-Shirt. He's kind and friendly and familiar. When he reemerges in a suit and tie, the crowd goes crazy, on cue. Jesse Eisenberg is fresh off his Oscar nomination for The Social Network, so it's cool to see him in person (even though he's a little — OK, a lot — nervous). My mom, my sister and I have a blast. We laugh a ton. It turns out to be the perfect way to while away the worry hours.

For half a day, not only do I forget about my surgery, but I actually forget I have cancer. 

And that, my friends, is the healing power of comedy.

Monday, June 27, 2011

HUMPTY DUMPTY

Surgery day is getting closer, and I'm beginning to worry about everything. (If you knew me, you'd know I have been worried about everything for forever, so how could I possibly worry any more? Well, I do because I can. Or is it I can because I do?)

My older sister has flown into town to help with whatever is needed while I'm having surgery and recovering. YAY! She is also here on business (she has a client nearby), but will provide the greatest benefit by assisting my mother (who no longer drives and is dependent on me). In theory this is a splendid idea — move the load of responsibility off my shoulders and onto my sister's. 

However, sister doesn't know how much there is to be done. She tells me in an email that she will call me during the car ride to her work appointment to discuss any details. There is no  way we can go over everything on the phone and without her writing it down. 

So I write up some lengthy notes and take them over to my mom's. The three of us — me, mom, sis — sit at the kitchen table as I try to explain everything that I'm worried about: my mother's medical appointments, her upcoming taxes (which haven't yet been started), her bills (which I facilitate paying), her bank statements, her prescriptions (which I pick up) ... the list goes on. Both my mother and sister tell me the exact same thing: do not worry about anything. Huh? Aren't they listening? I'm the only one who knows how the bills are currently being paid. I'm the one who knows what's currently happening with my mother's health. (My mom, bless her heart, tries not to think about any of these details and therefore does not remember much about any of them). 

But somehow, I'm now supposed to simply stop worrying and focus on my surgery. Everything will be taken care of. Just like magic.

Well, I'm not buying any of it. 

Because here's what will happen: I will be out of commission for a few weeks while my mind is on my own healing. My sister and mother won't know (or recall) what is supposed to be taken care of if I don't tell them. Things will fall through the cracks. And when I finally re-surface, I won't remember anything either. Then my sister will fly home and I will be left with the fallout and the pieces.

What, me worry? That's crazy talk.

Maybe if I allow them to help me solve a small problem I see on the near horizon, they will "get it." So I tell them how friends and neighbors want to bring me meals, and that I would love that, but if I can't make a sandwich for myself, how will I be able to get out of bed and go downstairs and answer the door while also getting our two adorable but ferocious barking machines (otherwise known as dogs) to go outside so I can let "person with the food" inside without their being pounced on (or worse, if the barking machines don't like them, nipped at). OH, they say. That IS a problem!

These are but a few of the details I am stuck on in the days preceding my surgery. I am consumed with worry about everything because I somehow feel everything is my responsibility to worry about.

Then it hits me. Things are going to have to change or I will never get through this ordeal. I'm going to have to learn how to let go. I'm going to have to give up worrying. Cancer's going to have to "cure" my desire for control.

Right. Just like Humpty Dumpty learns to effortlessly dance along the edge of a brick wall.


Saturday, June 25, 2011

TO BE ME

This week I went out with a few former co-workers, many of whom I hadn't seen in years. They all knew about my recent breast cancer diagnosis and treatment; this gathering was, in part, to celebrate "catching it early" — though no one seems to get that early diagnosis in no way means "cured." It can always come back. Cancer is funny that way. 

Anyway, it was fun to catch up and feel the love in their hugs — like an extra layer of emotion wrapping itself around me, a kindness deeper than I have ever felt from this group of women. No pity party, this; more a cross between empathy and the cold, harsh reality that no one wants to be me

My pre-cancerous life never followed a typical, predictable path. I married late (took me a while to find my Mr. Wonderful) and never had kids (the latter didn't help my BC risk). I had the time, energy and wherewithal to pursue my passions. It was a fun, full, crazy life. I took care of myself, and got routine mammograms. Then I got breast cancer. Now no one wants to be me.  

Cancer will do that to a girl.

So instead of a first-class ticket to Paris, I nabbed first-class status in the funkiest of fraternities. And once you get drafted into the Cancer Club ('cause no one volunteers for this army), there's no way out. I couldn't go AWOL even if I wanted to — and I want to every single day. The best I can hope for? An honorable discharge. 


Friday, June 17, 2011

PERSONA NON GRATA

My bilateral mastectomy is scheduled and I'm at my primary doctor’s office on Monday to pick up a copy of my chest X-ray from a couple weeks ago. But they can't seem to find it. Hmmm. I make a pre-op appointment for two days later and tell them they can give me the results when I come back on Wednesday. The nurse says great, we'll see you then.

Since my cancer diagnosis, my husband has been accompanying me to all my doctor’s visits; but since this next appointment is for simple blood work, I go alone. And guess what? When I get there, they have no record of the appointment I made two days beforehand. And they have no approval from my surgeon for any blood work. And they still can’t locate the results of my chest X-ray. WTF??? 

Of course the receptionist asks who I made my appointment with. Of course I didn’t get the nurse's name. This isn't the first time I've felt this office doesn't have a clue that I exist (persona non grata, anyone?) and this makes me very scared. I'm afraid I'll fall through the cracks and I'll get to the hospital and things won't be in order and my surgery will be cancelled and my cancer will continue to grow and then I'll die. OK, I realize this is catastrophizing, but I become so flustered by these thoughts that now I can’t remember when I was in the office to make the appointment they have since forgotten. Was it yesterday? Was it two days ago? And why was I even there then? For the life of me, I can't remember. (I have chemo brain and I’m not even on chemo!) 

Apparently there is some confusion over what kind of labs I need, and they have to wait for my primary care doctor to sign off on the order. "You can wait if you’d like. But it could take 5 minutes or 5 hours." You have got to be kidding me! Do you really expect me to sit all morning in this waiting room filled with coughing kids a week before I have major surgery? I don't actually say this, of course; instead I just passive aggressively leave the office, cursing the nurses under my breath. I reach the elevator with tears in my eyes. I'm not sure which doctor's office is at fault here, but I'm going to get to the bottom of it. Like I even have energy for this crap!

I go outside and call my surgeon. His nurse says they faxed the lab request over yesterday. Great. At least now I know where the fault lies. I really like my primary doctor, he's a brilliant man, but his office is SO busy and his staff so obviously disorganized and they don't even know who I am and what am I going to do about all these details that I simply can't control? I want to scream. Why does every single thing fall to me to follow through? Why can't one thing go right? Preparing for surgery is a freakin' full-time job. I hate this.

I call my husband from my car and start sobbing. (Who knew I would need him to come with me to get my blood drawn? Geesh. And the fact that I skipped breakfast for the labs I'm now not getting? Not helping.) But rather than give me sympathy, my hubby tells me I need to stand up for myself! WHAT?? He says, "Go back upstairs and demand that they do your blood work. You made an appointment. They screwed up. Make them fix it."

Yikes. I can’t even catch a break with my own husband. Cancer sucks.

I don't want to deal with this, but I know he's right. So back in I go. But when the elevator doors open and the receptionist sees me, she quickly picks up the phone and whispers, “She’s back.” Oh great. They've all been talking about what a b**** I am. I sit back down in the waiting area, in plain sight of the snarky receptionist. I wait there for 25 minutes. No one comes out to help me. 

My cell phone rings. It's my husband checking on my progress. I tell him I haven’t made any, and start crying again. I'm not usually this passive (in fact, I err in the opposite direction: control freak) but this whole cancer thing is turning me into a vulnerable, fraying mess. This time, however, hubby offers to come over to the doctor's office on his way to work and bring me a banana (how cute is that?). I tell him, "We have to switch doctor’s offices — this isn’t something a banana can fix."

I hang up, get in touch with my inner warrior and approach the receptionist. “Look," I say, "I just need to make a new appointment for my labs.” She quickly buzzes me back into the nurse’s station. Progress! I explain my story again to the one nurse who “knows me” (and I use that phrase very loosely). She again explains that they don't know what labs need to be done until the doctor releases the paperwork. “We’ll call you when he signs it and you can come back then.”

No.” 

I’m shocked to hear this word come out of my mouth. Warrior Woman has finally broken free. I decide I'm done for today. “I want an appointment. For this Friday. At 9 AM.” She hands me an appointment card, just like that. I get her name. 

And you better believe I’m bringing my husband.

Monday, June 13, 2011

SISTERLY SUPPORT

What do you do when you're knee deep in do-do and about to go through something as awful and terrifying as surgery? You Google It, natch. And after you've researched said awful, terrifying something, if you are like me, you then go about finding others who are going through the very same do-do as you. (Because sharing do-do is much better than dealing with do-do alone.)

That's how I stumble upon a vast network of women who are going through breast cancer just like me. Tens of thousands of women. And I find them just 12 days after I am diagnosed. How lucky am I? This online community of sistahs keeps me laughing, sane, supported and in check. They are my lifeline on an otherwise do-do filled journey.

One of the things I love most are the insightful moments that come out of our online discussion threads. Everyone has their own unique perspective as they wade through the all-too-familiar mire known as cancer. Sometimes people's perspectives match mine dead-on (pun intended); other times we differ dramatically. One day during a rather frank discussion about death and dying, a woman shared something quite profound. A close friend of hers had recently passed away (and not from cancer, BTW). The deceased friend came to this woman in a dream and said, "Just because you have cancer doesn't mean you are going to die — just like not having cancer means you are going to live."

Whew. That statement, spoken to a woman in a dream by a woman who is dead, makes the hair on the back of my neck stand up.

Here I am fretting (albeit understandably, gotta cut myself some slack here) about the possibility of dying. But what's changed? I'm the same person I was 6 months ago. (My breast cancer was in me then too; my surgeon says it's probably been growing for 10 years). Yet now the word "cancer" and my name are forever tethered together.

I think cancer brings me closer to death. Or does it? Aren't we all just a hop, skip and a jump away from biting the big one? Some of us are fortunate (and I use the term most loosely) to get a glimpse of our potentially shortened lives. It's one of the many, ahem, "opportunities" that cancer conjures up. (Cancer provides plenty of other "opportunities" too, but I haven't the time to delve into that do-do right now.)

But this I know is true: We all die. And we all spend our lives trying not to think about it.

Your not having cancer doesn't mean you are going to live any more than my having cancer means I am going to die.

Think about it.


Thursday, June 9, 2011

DECISIONS, DECISIONS

Vegas did a number on me. (OK, it wasn't Vegas that did it — it was the possibility of needing a double mastectomy.) I am on edge, on the verge of crying, and short-fused. It's a bad mix. I need a solution. Fortunately, Dr. A. is true to his word; he calls Dr. C., the plastic surgeon, over the weekend and I am fast-tracked into an appointment  on Tuesday afternoon. My BFF accompanies me to take notes. 

I like the guy instantly. He asks me to begin with my list of questions because he says he can tell from what I ask how informed I am about breast reconstruction, and this allows him to tailor his answers specifically to me. I love the approach; it makes me feel more in control. He's also very easy on the eyes. (OK, so that's not why I chose him but it's not such a terrible side benefit, is it?The night before my appointment, I comb through The 10 Best Questions for Surviving Breast Cancer (it’s more like 200 questions, actually) and create a long list. Dr. C. patiently listens and carefully answers every one of my questions. He spends nearly two hours with us. 


Though I have just met him, I decide that if it comes down to needing a bilateral, this is the man to make me look whole again. My BFF feels the same way. (Yup, she agrees he is adorable and the right guy for the job. It's good to have friends with your best interests at heart!)

The Possible Plan (should I need it): Immediate bilateral reconstruction using tissue expanders with a later surgery down the road to exchange the expanders out for silicone implants. (Silcone had issues back in the 1980s, but Dr. C. assures me they are very safe now and prefers them over saline because they are the most natural looking.)

I am thrilled to have my surgical team in place. Now I can focus on figuring out what kind of surgery I need so I can get this cancer out of me. I've been very patient up until today. Now I want it gone

The next day is my MRI. I am claustrophobic, so I have to mentally get past this. A technician has me lie face down, with my boobs hanging through holes in the imaging table. (Do the humiliations ever end with breast cancer?) The machine makes clanking noises while I stay perfectly still. I shut my eyes and imagine I am hiking on my favorite trail in the wide-open spaces. I keep my eyes closed the entire time. Fooled even myself; I nearly fell asleep.

I arrange to pick up copies of the MRI films two days later and then take them to my surgeon Dr. A., who gives me the bad news: it's clear from the MRI that due to the size of my mass (3 centimeters), a lumpectomy will, in fact, leave me disfigured. So one week after hearing that I might need one, I bite the bullet and give the go-ahead for Dr. A. to schedule a bilateral mastectomy. 

Dr. A. and Dr. C. will work side-by-side in the operating room; Dr. A. removing breast tissue and any necessary lymph nodes, Dr. C. starting reconstruction by placing tissue expanders under my pectoral muscle to keep my skin inflated while I heal (and eventually filling the expanders with saline over a period of months, then another surgery to swap them out for permanent silicone implants). And this is all going to happen in less than two weeks

Saturday, June 4, 2011

VEGAS MELTDOWN

To put you in the mindset: I'm in Las Vegas with my two BFFs for a rhythmic gymnastics meet (the daughter of one of my BFFs competes). I am nervous about my upcoming lumpectomy, so this weekend is a welcome distraction. The first rhythmic event is tonight, and we're all really excited. After breakfast, we spend the day walking around The Strip and end our outing at Serendipity, where we wait 45 long minutes for their famous (and fabulous!) frozen hot chocolate. 

We return to our hotel to shower and change. And since I am the official "makeup artist" today, I also apply eyeshadow and lipstick and sparkles to my friend's daughter's pretty face. In the adjoining room, I hear my cell phone beeping. It's now 5:30 PM on a Friday night and my surgeon, Dr. A., has left a voicemail. This is very odd. I've got 10 minutes before we have to leave for the competition. I rush to call him back.

Good news/bad news. He has presented my case before the hospital's tumor board and has called to tell me the consensus is in: I need an MRI of both breasts before I can have surgery. And that's not all. Due to the location of the cancerous mass, my nipple must go. Which means more than half my breast must also go. Which means I likely will need a mastectomy — not the lumpectomy I am scheduled for in five days.

Dr. A. and I had previously discussed this very possibility at our last appointment, and I told him then that if I wind up requiring a mastectomy, I want a bilateral. Remove 'um both, remove as much future worry as possible. And give me some matching, reconstructed boobs. Now he agrees this is the best plan of attack, but the MRI will tell us precisely what we should do. So I need to get that scheduled. In the meantime, will cancel next week's surgery.

My head is swimming. My BFF knocks on the door to say we have to leave. I plead for five more minutes. (I realize this makes the kid potentially late, but I don't know what else to do.)

Dr. A. also adds that I need to see a plastic surgeon for a consultation. Can he recommend anyone? I ask. He gives me two names. But something doesn't feel right. I pause, then say, "If this was your wife, who would you send her to?"

"Does your health insurance let you go out of network?" Yes. "Then if it was my wife, I would send her to Dr. C. He's an artist. We've worked together before. I'll call and tell him about your case, but you give him a call on Monday." 

In the span of 15 minutes, I've gone from mentally preparing for a lumpectomy to probably needing a double mastectomy and a plastic surgeon. This is way too much to process.

Yet my little entourage awaits. So I swallow my fear, force back the tears and step into the hotel elevator. I smile at our little gymnast, but my BFFs can see there's trouble in my eyes. Somehow, we get through the next hour talking about routines and hula hoops on the way to the meet before leaving her with her coach and teammates. We have exactly one hour before the festivities begin. One hour to cry over my beer and dissect my need for a bilateral mastectomy in a nearby pub.

The next day is spent in a stifling hot, noisy gymnasium watching dozens and dozens of  girls perform complicated floor routines to very repetitive music. We are sitting in a crowd of parents and children — certainly not an environment where I can break down the way I need to. I probably should have stayed at the hotel and ditched the meet, but the thought doesn't occur to me until I'm already inside the crowded gym. Besides, it feels better to be surrounded by my friends than be alone with my thoughts. So I suppress my emotions and put on my  "everything's OK" game face. But everything is so not OK.

But eventually I crack. It happens before the final event. I have a hot flash and feel like I'm about to implode from the heat. I can't find enough air to breath, and can no longer hold "it" in. I leave the gym abruptly, wade through the throng of spectators and slip outside where the air feels cool. And I start walking. I pass a playground with seating, but there are kids playing, and I can't deal with their screams. It is I who wants to scream. 

I wander over to a senior center next door and sit down on a cold bench. I'm finally alone — and so numb and overwhelmed I can't even cry. I just sit there and stare into space. 

I needed this weekend away with my best pals before I head into surgery. And if I had waited until Monday to return the surgeon's call, I might well have had the carefree time I was envisioning. But once that fateful call was answered, all bets were off; I lost emotional control. And the road trip quickly morphed into an exceedingly stressful, solitary nightmare on wheels. I call my husband. I just want to come home.

Thursday, June 2, 2011

PRE-OP ROAD TRIP

My datebook tells me I have a lot to do today before I head to Las Vegas tonight. I wish I could say I am taking a trip to take my mind off my upcoming surgery (while that is a side benefit, it's not the real reason I am going). Instead, I am accompanying two BFFs and one BFF daughter, the latter of which is competing in an athletic event in Vegas. And a road trip sounds soooo good right about now.

          First things first, though. I pick up my car, which has been in the shop due to a broken automatic-window-control thingy. Then I stop by the dentist to cement a crown and get my teeth cleaned. For some unknown reason, I decide to tell the hygenist I have breast cancer and of course I start to cry. (And no, I really didn't see that one coming!)

          Next up: my pre-op appointment with my internist, Dr. S., in preparation for my January 19th lumpectomy. But he is not in today. Instead, I see a doctor I've never seen before. She greets me in 3-inch heels and carries a folder with the pathology report from my biopsy in her hands. She glances down at it and says (quite casually), "So, you'll be having chemo then?"

          Me: "WHAT?"
          Daffy Doc continues: "I see you are estrogen negative."
          Me: "No, I'm not! I'm estrogen and progesterone positive — I'm HER2 negative!"
          DD: "Oh, I must have read that wrong." Pause. 
          DD (again): "I see your BRCA test is negative."
          Me: "WHAT? That can't be back yet. It's too soon. Are you sure?"
          DD: "Well, that's what Dr. S. typed it in here. Why would he type it in if it wasn't in?"

Now my blood pressure is on the rise. She asks me a few real questions (not inane assumptive statements) and then a nurse comes in to draw my blood and run an EKG. I'm handed a referral for a chest Xray (which I have to get at another location on the other side of town). On my way out, I ask the nurse at the front desk for a copy of my BRCA results. Guess what? They can't find them. The nurse that drew my blood pipes in: "I haven't seen any BRCA test results come in yet." Really? How surprising.

          I wish medical professionals would be a tad more sensitive; these tests, these stats, are a VERY big deal. And when my info is treated nonchalantly like this, it makes me feel whittled down to a bare nub of a patient — just a number on a chart that can easily be misread. Not on my watch. This is MY life we're talking about!

          I look at my cell phone and realize I have barely enough time to get the chest Xray and then get home to make dinner before my BFFs arrive. We have a quick bite, hop in the car and steer it towards the freeway. We laugh, we joke, we sing, we break a tail light.  BFFs are great!

          We roll into Vegas exhausted, and plop down onto our big, comfy pillow-top beds. Oh yeah, this is exactly what I need.