PATH TO THE REPORT

Let's talk food and conversation post-surgery — specifically, food delivery by friends and family while a patient (that would be me) is recovering. 

The people, they come with the meals. As in, they bring over the food, they sit down and they eat it with us. 

Perhaps this is peculiar to my circle of loved ones; my family lives thousands of miles away, and two out of my three siblings (plus my sister-in-law) have traveled to see me post-surgery. My husband has taken off work to take care of me, so I don't really need (or want) anyone staying at my house. Lucky for me, they all stay with my Mom.

But let's get back to mealtime...

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.

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.

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. 

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.)

DR. A. & DR. J.

I have a second appointment with a surgeon at the cancer center. I walk in and immediately feel I don’t belong. There are old people everywhere; patients waiting with adult children or grandchildren or young “nurses.” Only one other couple looks to be around my age; her husband is filling out her forms. She looks anxious. First timer. Just like me.

My husband and I wait an hour; Dr. A. finally enters the examining room just as my cell phone rings. It's my mom. I haven't told her I have cancer yet. I tell her I can’t talk. Now I’m spooked. (She has exceptional intuition, my mother.) 

Dr. A. patiently explains the procedure he will do for me to remove my cancerous mass: a lumpectomy. He'll also be doing a sentinel node biopsy to determine if my cancer has moved into my lymphatic system. Breast cancer spreads via the lymph nodes; during surgery, a blue dye is injected near the cancerous tumor, and the sentinel, or first, lymph node that takes up the dye is removed and examined under a microscope. If the sentinel node tests positive, that means my cancer has spread and Dr. A. will take out additional lymph nodes. And that also means I’ll need chemo. (Note to self: If my right arm hurts upon awakening from surgery, it's not good news.)

Since I have family history (my sister had breast cancer at the age of 31), Dr. A. asks if I have had a BRCA — the DNA test that analyzes mutations in a pair of genes responsible for some breast cancers. Yes, I tell him, and I should hear back in a few weeks. He is pleased but stresses that I shouldn’t wait until I get the BRCA results back; I should schedule the surgery as soon as I can, to "get it out of there." He’s right. It's been more than three months since I had the "bad" mammogram. I need to get it out of there.

Dr. A. has answered my dozens of questions patiently, thoughtfully. I trust him and want him to be my surgeon. I talk to one of his nurses about setting up a date for my lumpectomy.  She explains they need approval from my insurance company before I can be put on the schedule and this could take a couple of weeks. I leave not knowing exactly when surgery will be, but happy to at least have a plan. Having a plan means having control.

After our consult, a social worker asks if have any questions for her. Uh, how do I know what I’ll need emotionally when I haven’t gone through anything but anxiety yet? My BP is good upon arrival (125/75); but I can only imagine what it is now. I take her card.

On our way out, we run into a physician that my husband knows very well. This is awkward. Dr. J. is one of the doctors who treated my husband’s late wife for breast cancer. So there is a lot of history here. Since I have taken such great pains to keep my diagnosis from everyone, I am absolutely terror-stricken that my news will now be leaked — and not by me. 

But we try and play it cool, my husband and I. Dr. J asks us twice: How is everything, how is the family? We nod fine, fine. But it is obvious things are not fine. Pause. My husband fesses up: "We’re here because she has breast cancer." I quickly add, "and we haven’t told anyone yet.” Then the tears come. Dr. J. tells me not to worry, he won't say a word. Doctors are supposed to keep these things secret, right? Yet I know in my heart of hearts he will go home tonight and tell his wife that my poor husband now has had two wives with breast cancer.

By the time we get into the fresh air my head is pounding and I am starving. We head to a deli for a bite to eat. 

On the drive over, I call my mother but avoid talking about where I just was. (I will tell her soon enough, just not on the phone.) My husband and I sit down in a booth at the back of the restaurant, and I order cabbage soup and half a corned beef sandwich. My husband puts his hand on mine, a tender gesture. I pull away. "Don’t!" I snap at him. "I’ll start crying and I don’t want to lose it right now!" I hold it together but do a lot of staring off into space during lunch.

We get home at 3 PM. I put on my pajamas, close the blinds, crawl into bed with my dogs and watch House Hunters for 2 hours. Then I fell deeply asleep.

This is getting real now. 

My time is no longer free. 

I fear this cancer has spread. 

I don’t want to lose my hair. 

I can handle pain but I’m getting afraid. 

I tell myself to be glad for moments of happiness and fun and clear thinking — they help offset the ugliness that I know will bring me down if I'm not balanced.

I’m trying very hard to level the playing field.

(See Operation Wigout for the next installment.)