5 DINNER GUESTS

It's Day 19 of the WEGO Health Activist Writer's Month Challenge and my task is to tell you about the five people I would have over for dinner. My group may seem ordinary ... but I assure you the circumstances are anything but!

Guest #1: My father. He didn't like to travel, so he never visited me after I moved out of state. He died four years ago — six months before I got married. (My brother walked me down the aisle. Yes, that was emotional.) My mother, still grieving, wasn't well enough to make the cross-country trip, so she did not attend my wedding either. (Yup, that was emotional too.)

Guest #2: My husband's father. He was the only one of our parents to attend our wedding (my future mother-in-law died while my husband and I were still dating). Unfortunately, my father-in-law passed away seven months after we married.

Guest #3: My mother. One year after my father died, my mother decided she was ready for a change. So after visiting my siblings in various parts of the country, she made her way to our place. Her timing was bittersweet and laced with fate, because she never got to meet my father-in-law. Why? He died three weeks before she arrived. (Are you following?) After visiting us for a few weeks, my mom decided to stay — permanently. We toured several apartment complexes, but nothing was a perfect fit. Then we realized we already had the perfect fit — nope, not my house; my late father-in-law's. She now resides in my husband's childhood home. So instead of saying "Let's go visit your father" I say, "Let's go visit my mother." Same house, different parent. Kismet!

Guest #4: My husband. How could I leave him out of this masterful dinner plan after all that?

Guest #5: The Barefoot Contessa. Ina Garten is such a fabulous cook; her recipes are a delicious delight, and her parties look like so much fun. This is a dinner party, after all, and someone has to cook. Why not ask Ina? We'll go to her Hampton's house and eat outdoors with the cool ocean breeze. Sounds downright delightful.

CLOSETS AND HUCKLEBERRY FINN

It's Day 18 of the WEGO Health Activist Writer's Month Challenge and today's prompt tells me to choose a book, open to a random page, point to a phrase — and start writing. I grab the first book I see on the shelf: a 1948 copy of The Adventures of Huckleberry Finn. I'm not sure I can write a blog post based on whatever I find in here, but I'll try...

(Copyright © 2012 The Big C and Me)

Page 100: "By and by, when we got up, we turned over the truck the gang had stole off of the wreck, and found boots, and blankets, and clothes, and all sorts of things, and a lot of books, and a spyglass, and three boxes of seegars."

I haven't stolen any trucks with my gang lately, but I did clean out my closet this morning — and found some boots and clothes, along with the following:

• a burgundy tablecloth from Christmas
• a map to a beach town I recently visited (I picked up the map when I was there last summer, so it's obviously been on the floor of my closet most of the year)
• an old bathrobe (that finally found its way to the rag pile)
• a small rattan picnic basket (holds one bottle of wine, two wine glasses, two cloth napkins and a corkscrew, and has never left the house)
• A pink bed pillow (I used it while recovering from my bilateral mastectomy last year)
• A Jersey Boys playbill
• A coupon to California Pizza Kitchen that expired July 3rd — of last year (I'm seeing a pattern here...)
• A black and white photo of Husband and I on our wedding day (I swear, I'm not that old; I had a print enlarged and made black and white, but then promptly forgot to frame it. Maybe for our anniversary?)
• Slippers from the Four Seasons (the hotel, not the Frankie Valli variety)
• My gym bag (which reminds me: I need to join a gym)
• Several cloth grocery bags (why they insist on hanging out in my closet and not in my back seat, I'll never know)
• A few of my late father's shirts (just because)
• A metal thingy that has six hooks on which I will hang belts (once Husband attaches it to the wall)

I didn't find any blankets, or books, or spyglasses. (And definitely no seegars.) But I have to admit: It was an adventure!

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.

WATERWORKS

My room is ready. (Wish it were overlooking a tranquil sea instead of in a hospital, but I'll take what I can get.) After 4 ½ hours of surgery and five hours in recovery, a room without a view sounds pretty darn good right about now. At least it's private.

A male nurse arrives to take me upstairs (what floor, I couldn’t tell you). Despite my post-surgery brain fog, I find it a little odd that he's the only one assisting in my transfer (besides my husband, that is). As I’m wheeled backwards into the elevator, I suddenly feel emotional. I close my eyes and let the tears roll silently down the sides of my cheeks.

Then BAM! The magnitude of the moment finally hits me. Just. Like. That. Up until surgery, I've been able to focus on a single thing at a time, placing one foot in front of the other. I had tunnel vision, and I liked it. But with surgery now complete, I'm left to face my new reality. And I have absolutely no idea what that looks or feels like.

We reach my room and I'm still quietly crying. Like a leaking faucet. Can't turn the waterworks off. (This time I don't even try.) The lone male nurse raises my gurney so it’s the same height as my hospital bed. Then he asks me to move myself over. Yup, you heard me right — he is not planning to slide me over using a sheet, he is asking me to move my fat fanny from the gurney onto the bed. Myself. After I just had major surgery. 

I can’t. How do I do that without using my arms or pulling on my chest? Why can’t someone else help? Where are the other nurses? Why is he asking my husband to spot him? Are they really that short-staffed?

I'm not sure how much of the above I actually verbalize (parts, but definitely not all). And there stands my fabulous husband, encouraging me to "just slide over," saying it’ll take a few seconds and then it will be done. I glare at him. Whose side is he on here? But I haven't the energy to fight. He's right. It will only take a few seconds, but why should I have to...? Before I can even finish my martyr-lovin' thought, I do a one-two-three shimmy off the gurney and onto the bed (with their help), crying the entire time. In part because I’m in pain, natch, but mostly because I’m a freakin' emotional mess. Yet this doesn't seem to faze the nurse, nor my husband. Huh?

I'm caught so off-guard by the wall of rage that is building inside me that I cannot hold it back. (Kinda like retching in the recovery room.) My feelings are overripe. Oh no. Lower your lids, this ain't gonna be pretty.

“Don’t you people understand what I’ve just been through?!” I scream the words, surprising even myself with my ferocity. (The male nurse spins the gurney out of the room so fast I think he left tread marks.) My husband looks startled. He’s never heard me lose my cool like this before. N-e-v-e-r. But the raging isn’t over. 

“I just had my breasts cut off!" I continue screaming (and don't care who hears me — so unlike me). "Don’t you get it? Do you know how hard this is?” My voice is horse. 

All the raw, suppressed emotion of the past two months shoots out of me like loose gunshot, hitting anything and everything in its angry path — in this case, my poor husband.

“You're a very strong woman,” he says calmly. “You’ve been so strong through all of this.” 

Lest he think I don't know it, I take the opportunity to tell him. "I am strong!" I yell back. Then, with more than a trace of vulnerability: "But I can't be strong anymore." I'm sitting in a heap of sheets. He leans in to give me a hug (not easy to do given the IV and the pillows and the bandages and my semi-reclined position). 

I wish I could say that releasing my emotions made everything better, but that would be a lie. The pain — physical, mental, emotional — has only just begun.

RETCH & RECOVER

I hear a woman’s voice. She’s calling my name. Everything else is like peach fuzz. I try to bring her into focus but I’m laying on a gurney. In a room much like the pre-operative one, with a nurse’s station directly in front of me. Have I even had surgery yet? I’m confused. Thoughts float around in my head as though lodged in thick, groggy soup. A nurse types something into a computer to the left of my bed. She asks how I’m feeling; she takes my blood pressure. I try to force my eyes open, but a familiar sensation interrupts this task. The nurse quickly grabs a pink kidney-shaped basin. Afterwards, I close my eyes. The room spins. Another tidal wave hits. The pink basin remains at my side.

It seems I’m having trouble coming out of anesthesia. I’m aware — acutely — of how tightly wrapped my chest is. I’m snapped inside an oversized, papery purple gown with white bear paw prints running across it. An ace bandage and a whole lot of gauze compresses my new chest, which is now comprised of two temporary tissue expanders beneath my pectoral muscles (since all my breast tissue on both sides has been removed). Dr. C. has filled each expander with 400ccs of saline. The purpose is two-fold: to hold the space left by my now-departed breasts while I heal completely, and to give me a semblance of a chest, so I am not flat-chested after surgery. Both help with healing — the former with my physical healing; the latter with my emotional. In a few months, after the expanders are filled a bit more with saline, I will have a second surgery to remove them and put in permanent silicone implants. 

But for now, somewhere in the cobweb-like recesses of my brain, I remember to check under my right arm to see if it hurts. (Pain means lymph nodes were removed.) Because I can't reach under there, I focus my thoughts on my armpit. But I feel nothing. Yay! Turns out I’m just numb. Dang. I string enough words together to ask the nurse Is there cancer in my nodes? Her response disappoints. “I don’t know, honey. You have to ask the doctor.”

For the next couple of hours, I slip in and out of sleep between bouts of nausea. I can’t have water yet, so my throat is achingly dry. I start to shiver, and a hose is quickly attached to my pretty purple gown. Warm air swooshes all around me, enveloping me, and for a brief moment, I feel peaceful, even cozy. But it’s a momentary respite; my tummy is unrelenting. I'm given Zofran but it does nothing.

I can feel time passing. I fall into an automatic, Lamaze type of breathing — short, quick, rhythmic breaths in an attempt to tame my pain. In actuality, it just gives me something to focus on besides the nightmare I seem to have woken up in. And that’s OK. I’ll take the distraction.

Speaking of distractions, where is my husband? I look around; he’s not here. He’s never been here. Seems the nurses haven’t brought him in to see me yet. OMG. That means he’s been sitting in the waiting room the entire day with my mother and sister. Waiting. Worrying.

I open my mouth but can manage to eek out only two words: “My husband.” The nurse nearby ignores me. So I repeat myself. Still nothing. Oh. I’m only talking inside my own head! I focus hard on saying the words out loud; this time she hears me, and nods OK.

And like in a dream, when I reopen my eyes, my husband is standing beside me. It’s obvious I’ve been going through a terrible time; I look limp and pale as a noodle. (He later tells me that upon seeing me, he went back out to the waiting room and sent my mom and sister home, rather than have them see me like this. Good call.) 

My husband asks the nurse what meds I’ve been given so far, then suggests Ativan, an anti-anxiety medication that also has an anti-nausea effect. My surgeon, Dr. A., agrees with him, saying, “Good idea. Let’s try it.” Within minutes, the room stops spinning. My husband explains to me why: Nausea begins in the brain, not the stomach — which is why the Ativan works.

My husband the hero pharmacist strikes again.

My surgery has taken 4 ½ hours. I’ve been in the recovery room an additional five. We arrived this morning in the dark; it is now dusk.

(Copyright ©2011 Rennasus)

But what about my nodes? They removed several. All were negative. While we won’t know exactly what we’re dealing with until the pathology report comes back in a few days, both surgeons say there were no surprises. They got clean nodes and clean margins. This is as good as it gets. We are happy, despite all the day's drama.

I finally made it to the other side.

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.

NEW YEAR

I began this blog several months into my journey with breast cancer. Didn't feel like talking about it (much less writing about it) back then. And as I've mentioned in posts prior, my husband and I kept the news to ourselves until January. We hurried through the Christmas holidays in a hushed haze, then squeaked past New Year's by the skin of our teeth. Here's what happened.

A few weeks before the holidays, we go out to dinner with our core group of friends — five couples who spend every New Year's Eve together. The discussion quickly turns to what we are going to do for the big night. My husband and I have already decided we are going to sit this one out. There is no way I can pretend to be happy, in front of friends, about a new year that is ushering in a dirty little secret — we hadn't let the cancer cat out of the bag yet. 

Our friends don't understand our sudden desire to spend New Year's alone. My husband takes the curmudgeon hit, saying he can't bear to sit in a noisy, over-crowded restaurant for hours on end and would rather just stay home. They think he is getting old and crotchety (who isn't?). And of course they try to convince us (as all good friends will) to come along, or do something other than dinner. They promise we'll have a blast and say we're silly for sitting at home when we can do that any night of the week. After all, man, it's a new year!

Exactly.

The pressure is daunting. Everyone wants us to hang out with them but I feel like I'm drowning. (Can I get a life jacket over here? Please?) But we stick to our guns, and though our friends think we've gone a little bonkers, they ultimately respect our desire for a "romantic evening" alone. (Ha.)

New Year's Eve goes out the way it came in — quietly. We watch the ball drop, try not to think about the ball of anxiety that's been dropped in our laps, and go to bed.

Our friends post pictures on Facebook of what looks like a fab New Year's Eve, with dancing and drinking and goofy noisemakers. It really does look like fun. (And it really doesn't look like they miss us.) 

In hindsight, our little white lie has left a pretty bad taste in my mouth. If I had it to do it over again, I would:

1) Tell my friends and family sooner rather than later. 

2) Gladly put my poker face on

3) Toss back a flight of champagne 

4) Toast to a Healthy New Year

5) Be happy I am able to do any and all of the above.

... because soon enough, I'll have more days and nights sitting at home than I care to count.

(For more, see Finding Support.)