HEADING HOME

BREAST CANCER LESSON NO. 213: Don’t let your husband go home the first night you’re in the hospital.

Such is how my evening begins.

After enjoying the requisite post-surgical strawberry jello and juice, my husband heads home to feed the dogs and get some rest. It’s 8:00 PM when he kisses me goodbye, saying only that he’ll see me early the next morning. (We neglect to clarify what “early” means.)

My chest is bound up like a Geisha’s feet, and I have four plastic tubes the thickness of straws sticking out of me — two on either side. The tubes are a foot in length; at the end of each tube is a plastic bulb about 4 inches long x 2 inches wide into which fluid drains from my incisions. A nurse comes in periodically to empty them; they fill up fast the first day. It’s gross and smelly.

I also have a pain pack that automatically releases medication through two very thin tubes under my chest. So I have four tubes, four bulbs and one tennis ball-sized pain pouch hanging off of me. (Anyone wanna dance?)

As a fresh-from-surgery patient, I must rely on the nursing staff to help me do everything. (Thank goodness I have a catheter.) What makes this more difficult is that a nurse, in her infinite wisdom and attempt at kindness, has closed my door so I can get some sleep. There is a visitor’s lounge a few doors down from my room, and in the middle of the night, it turns into Comedy Central. Every graveyard-shift employee is stopping by — laughing, eating, chatting on cell phones… a real hootinanny. (At least  that's what my codeine-fueled brain is imagining, anyway.)

My closed door also means I am now isolated. I can’t catch anyone’s attention as they walk by. So my night goes something like this: pain, nurse button, pain meds, BP, drains drained, nap, noise, awaken, lights, thirsty, can’t reach, pillows slip, can’t correct, itchy, can’t scratch, too hot, blanket off, too cold, blanket still off; nurse button, wait, wait, wait. Repeat.

The night nurse's aide — definitely not in the running for Miss Congeniality — is very busy and not very worried about me. I must look like I'm doing well. Her English is also not great. She doesn’t understand what I mean when I say I need her to scooch me back up in the bed. (I can’t use my arms, so it is impossible to move myself; and I’ve slid so far down the bed that my feet are starting to dangle off the bottom.) She is in and out in a flurry. (Again, this is how my brain-on-pain-meds is perceiving it.) I fall asleep with the comforting thought that soon, my husband and sister will be here to help.

Morning comes, as does my breakfast — the first solid food I’ve had in more than 30 hours. I gobble it down. No idea what it was. But my sister should be here soon. I haven’t seen her since before surgery; my husband sent her (and my mom) home when I was having trouble coming out of anesthesia. She’s an early riser so I expect her to walk through the door any minute now.

Breakfast is over. My water and cell phone are nearby. It’s 7:30 AM — too early to call anyone. I watch some television and doze off. I wake up at 9:00 AM and call my husband. He just got up. He says he’ll be here in an hour. I'm bummed. I feel like I've been waiting for him for forever.

That’s when I notice the sign taped to my door: “No BP on left arm.” What? That’s wrong! It’s supposed to be no BP on RIGHT arm! (Because I had lymph nodes removed from my right arm, I can't have my blood pressure taken on the right side.) Oh... so that’s why I had to keep correcting the nurse last night every time she came in and went for my right arm....

These are the details I focus on to pass the time.

The clock says 10:00 AM. I call my sister. Turns out she was intentionally not coming to the hospital this morning to give me time with my husband. Huh? She says she thought my husband spent the night in the hospital with me. I never said that. I ask her to stop by after lunch because hubby will be here any minute. (BC Lesson No. 214: Always ask exactly when someone is coming back before they leave.)

Nearly 11:00 AM now and still no husband. You can guess what I do next. Yup. The tears flow like a swollen stream after the rain.

And of course that is precisely when he walks in. Oh, am I cranky. I can’t do anything for myself! The night nurse couldn’t understand English! There was a party next door! I was completely miserable and hardly slept all night! I couldn't reach anything myself. I couldn't scoot myself up! I couldn't move my pillows! Blah, blah, blah! I pepper him with complaints rather than compliments. But he fluffs my pillow and flips it over to the cool side for me anyway. He gets me my pain meds and some ice water. He fixes the lousy sign on my door. And I start to relax just a little.

My sister arrives. I take my first walk down the hall, notice the visitor’s lounge and put two-and-two together. (So it wasn't just my imagination on drugs!) . My surgeon also stops by to see how I’m faring and is happy with my progress.

That evening, after my husband and sister go home, an absolute angel of a nurse on the graveyard shift appears. She is sweet, she is kind, and she is compassionate. She makes sure I have everything I need and never makes me feel like I am asking too much. She stops by often. She is like a dream compared to the night nurse before her. I actually sleep.

Morning No. 2 dawns, and my BFF arrives at 6:30AM. YAY! I called her yesterday about the mix-up with my husband and sister; thankfully she is an early riser and offered to come visit. After breakfast, we take a stroll down the hall. I’m in a purple robe trailing my IV bag on a hook. We go real slow. I feel weak but I know I need to move. As we round the bend, I see Dr. C., my plastic surgeon, leaning against the counter at the nurse’s station. He’s dressed in street clothes. 

“That’s your plastic surgeon?” my BFF asks. I think she is surprised I haven't mentioned the cuteness factor. (She later tells me she would be happy to accompany me to my plastic surgery appointments; she's only half joking.)

Dr. C. walks us back to my room, says I'm doing great and that I can go home. HOME! Yippee! He wants to see me in his office in three days for a follow up, when he’ll remove my drains and pain pack, but for now he is pleased with my reconstruction so far and even offers to show me how I look before I leave the hospital.

Oh no. I’m not ready for that. I want to stay wrapped up in the safety of my bandages a little while longer, thank you very much. I want the “big reveal” to happen in the comfort of home.

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.

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.

FAMILY HISTORY

I am relieved that my mom finally knows I have "The Big C." Now I just have to tell my siblings. I don't want my mother to have to make those calls — she's had to do that before, and I can't ask her to do it again. 

Back in 1984 (when I was 25), I got a call from my mom telling me that my 31-year-old sister had breast cancer. To say we were shocked is the understatement of understatements. There was no history of breast cancer in our family. 

As the mother of three kids under the age of 5, my sister was floored to find out her cancer was Stage 3. She opted for a bilateral mastectomy (highly unusual at the time) and had 31 lymph nodes removed as part of her radical mastectomy. Four nodes tested positive for cancer; that meant months of CMF chemotherapy. She lost her hair and her energy, and despite the fact that her hubby traveled for business more than half the time, she got through it — thanks to the good graces of friends and neighbors and family. A year later she had [then] cutting-edge microsurgery to reconstruct two new breasts from tissue in her buttocks. She is alive and well today and a happy grandma of two. 

So it's with a heavy heart that I have to make this call that cancer not only has my address but is ringing my door bell. My sisters  take the news with surprising calm (this is familiar territory; they've been through it before). There is emotion, yes, but we don't break down. I brief them more extensively than I do my mom, yet not as thoroughly as I do my BFFs. The info I dole out at this point in time is on a need-to-know basis; if no good can come of it, I don't share it. I am a believer in not giving people more to worry about than is necessary. Why drive everyone crazy when I am already going there myself? Crazy doesn't need company. Really.

I call my brother, but he doesn't phone me back right away. This is not something I can leave on his voicemail, obviously, and I decide to let my younger sister do the dirty work. I ask her to keep calling until she reaches him. Another bullet dodged.

Then there is the matter of my stepkids, from whom we are deliberately keeping the news. Initially my husband wanted to wait until after I had my surgery to tell them. (It's complicated: Their mother died of breast cancer when they were teenagers.) Once I have my surgery date set in stone, we'll tell them. Once we do, we can tell the rest of our friends. 

It's time to finally let the cancer cat completely out of the bag.

(For more, see Managing Chaos.)