Cancer Movie Review: Miss You Already

Spoiler Alert: If you don’t want to know what happens in Miss You Already, stop reading now.

It was one of those rare times when I had a child in bed and a few hours of TV to myself. I went looking for something that did not involve science fiction, superheroes or something with characters singing very! happy! songs! and came across Miss You Already.

The movie starred Drew Barrymore and Toni Collette and the description promised me that it followed two women as they laughed and cried their way through a lifelong friendship. I think Toni Collette is a goddess visiting the Earth, and like anyone who was a teenage girl in the 90s, Drew Barrymore can do no wrong in my eyes (although in high school, I was more in the Winona Ryder Club). With Drew and Toni, I was sold.

The movie starts when Jess (Drew) and Millie (Toni) meet in whatever the British call elementary school and follows them through young adulthood. They’re best friends the way that only young girls can be, and eventually grow into young women. Millie pairs off with a rock roadie who gets rich off of some sort of music-related business. Millie is gorgeous, glamorous and has the picture-perfect family and home. She mostly communicates by shouting how BLOODY AMAZING HER LIFE IS!!!!!

Jess is much more subdued. She does something environmentalisty. She is dutifully supportive of everything Millie does. She’s the wallflower to Millie’s queen of the rock star prom, always buying presents for the kiddos and never getting annoyed at Millie’s volume level.

(Here is where the spoilers start)

And about 15 minutes in, we find out that this is a breast cancer movie.  Millie has it. This was not what I was expecting, and if I’d known I probably would have passed on it, but I decide to soldier on. I want to enter the TV screen and ask all the questions that I now know to ask. Ok, but what TYPE of breast cancer is it? What is the stage? Are you HER2 positive? But, I can’t do that, and the movie doesn’t want to bog itself down with such concerns, which is understandable because these things are only interesting to people who have cancer and doctors.

Whatever type of cancer Millie has, it’s different than mine was. Millie has what must be called Fabulous Cancer, because you go through chemo but have the added bonus of looking like Toni Collette, and having perfect winged eyeliner.

It was at this point, that I almost shut it off. As a teenage girl in the 90s, Barrymore was my goddess, and Collette is one of my favorite actresses ever, but it was hard to swallow this woman going through chemo while continually barking about her BLOODY AMAZING LIFE!!! I just wasn’t feeling it. But then, things started to get real. For minor stuff that Miss You Already got wrong, it got the major stuff right. Really right.

Once her cancer treatment is over, and the mastectomy incision is healed, Millie starts to go somewhat off the deep end. She shags a bartender. Then after too many drinks, she and Jess decide that they absolutely must drive to the moors of Yorkshire because that’s where the Bronte sisters grew up. They not only have to do this, but they have to do it right now and they pay a taxi driver to take them there all the way from London. In reality, Millie is chasing after the same bartender mentioned previously who decided to head off into the country for whatever reason, but Jess doesn’t know about this. Until she walks in on them the next morning in the country inn where they’re staying.

A fight ensues at what looks like part of the Hogwarts set, which includes the line “You made me drive 250 miles so that you could get laid by a barman!” Millie says that this might be the only time she gets to do such a thing. It’s one of the most real moments I’ve seen in a cancer movie. I haven’t had the particular urge to run off into Harry Potter country to shag a bar tender, but I totally understand where Millie is coming from. (And also, good on Jess for calling Millie out, cancer or not.)

You hear a lot with serious diseases about how they make you understand what’s really important. That’s true. But when you think about how you can die at any time, suddenly there are lots of little things that seem important. You wonder if every birthday and holiday is going to be the last one. You want to create the perfect trip to the pumpkin patch and find the perfect Christmas tree because what if you die and your child doesn’t have this memory? People who aren’t thinking about their mortality don’t buy ice cream for their children wondering how many more times they’ll get to do this. You wonder if this one crazy thing you do will be one of the last crazy things you do. So yeah, I get why Millie felt so strongly about running off and doing something totally irrational, because when everything could disintegrate in the next moment, what constitutes a good thing to do can look very different. Suddenly, the most minor, stupid shit can be of the utmost importance.

Living every day like it’s your last looks a lot different in real life than when it’s on a motivational poster. It might not involve standing on a dock in front of a crystal clear lake, but it might involve having a giant pile of laundry because you’d rather spend the day at the park than putting anything away.

What Miss You Already also gets very right is the stark wall that comes up between those who’ve had cancer and everyone else. The fight between Millie and Jess isn’t really about the bartender. It’s about everything but the bartender. Millie feels terrified, resentful and lonely, and it can be easy to take those feelings out on the people around you, even when they don’t deserve it. You’re mad about the cancer and you’re mad about the treatment. You’re mad at yourself for getting cancer. You’re mad when someone on the street asks you where they can buy cigarettes and because here you are with burning skin from radiation treatments under your shirt and here they are stuffing carcinogens into their body. You’re mad about the friends and loved ones who have decided to put you on ‘ignore’ during your darkest time, so you lash out at the people who are there because at some point you just break.

Moreover, the reality is that when you go through cancer, you go through it alone. No matter how many friends and family you have helping you, those people are not in your brain hearing all of your thoughts. Those people aren’t the ones having gods only know what pumped through their veins and having to face the world without any hair. They don’t have to face another day of crackers and sparkling water because it’s all they can keep down.

It’s not easy to support someone with cancer. It’s asking a lot. I don’t know what my caregivers went through. I don’t know what sort of conversations they had while I was asleep at chemo, and I don’t know what my parents and husband talked about when I was in surgery. I don’t know how my husband took care of me, remembered to ask all the questions, got the toddler bathed and in bed every night and made dinner without cracking under the pressure, but somehow he did. I suspect part of the answer is that he’s a far better person than I am.

And they don’t know what it meant to be me. This is not an experience that I share with my mother, sister, or any of my aunts, cousins or grandmothers. I cannot turn to them for advice or experiences, because, thankfully, this doesn’t run in my family. None of my friends have had this. And that creates a wall.

That wall can make relationships difficult. Jess keeps her own significant news from Millie, and similarly, I had loved ones who kept things from me.

When the Walgreens cashier has a survivor lapel pin, I can point at it and say “Me, too.” I can fist-bump, hug and even cry with total strangers over this shared understanding, but I can’t do that with anyone else in my life.

I understand now how cancer can ruin marriages and friendships. It’s really no one’s fault. It’s just the way it is.

Life doesn’t stop for cancer, and there can be a lot of collateral damage left in its wake, which is what Miss You Already gets really, really right.

Are you aware? (Part 1)

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Pink. It’s everywhere. Photo by Eric Draper, White House.

It was a curious moment, coming around the corner in a department store and seeing the collection of mannequins decked out in pink.I had my final treatment at the end of August and reconstructive surgery a week later. I spent much of September making progress on my Netflix list, and re-emerged into society just as the pink onslaught that is Breast Cancer Awareness Month was getting underway.

I had to force myself to stop and look. The thing about pink and breast cancer awareness is that it’s so ubiquitous that it’s easy to overlook. And I still sometimes have to remind myself that all of this actually happened to me. So when I pass the pink display, I have to tell myself “Yes, dumbass, that’s you.” The first time I stopped and stared at it, trying to figure out what feelings I had. Mostly, I had questions. Do these products actually support any breast cancer organizations? How much do those organizations get from each purchase? Do they support research for treatments, help improve access to treatment, or just more “awareness.”

Most breast cancer patients and survivors that I’ve met have, at best, an ambivalent reaction to the pink and other awareness efforts. Some truly hate it. Some don’t want to see reminders of their disease plastered everywhere. Others feel exploited by commercial products that rake in millions of dollars while only contributing marginal amounts of money to actual research if they contribute anything at all. Some just plain don’t like the color. I’ve only met a few who truly embrace it.

Personally, I find most awareness campaigns to be frustrating. The overall tenor paints a, ahem, rosy picture of breast cancer. Just get a mammogram, and that will prevent cancer, and even if you do get it, you’ll get over it really quickly and hey, you’ll look adorable in that pink headscarf! Well-meaning people post cryptic messages about their bra color and the truly clueless post photos of their cleavage or even bare breasts online in the name of breast cancer awareness. Last October, as chemo for my breast cancer made my hair fall out and made me too weak to pick up my child, I mostly just felt confused and angry. I was relieved when No-Shave Movember started and some of the scrutiny passed.

Most frustrating to me is the idea that breast cancer is the easy cancer, and that it’s a problem that’s been solved. The actual reality of breast cancer is something that most people are totally unaware of. If this is you, this isn’t your fault. It’s just the way things are. In light of that, I’d like to present some information that is often overlooked, and in some cases outright ignored.

Are you aware that more than 40,000 people in the U.S., mostly women, are expected to die this year of metastatic breast cancer? Are you aware that number is only marginally down from the 46,000 who died 20 years ago.For all of the pink yogurt and pink office printer paper and pink fracking equipment that you’re buying, the actual number of deaths hasn’t budged since the mid-1990s.

Are you aware that metastatic breast cancer receives just 2 percent of the research funding that’s floating around out there? No? Neither was I. This is even more disturbing when you account for the fact that most breast cancer donation dollars don’t go to research at all. So researching treatments and cures for the type of breast cancer that actually kills you is a small fraction of a small fraction. Awareness and screening and outreach aren’t entirely bad, but we’ve had a few decades of it and we have barely improved on deaths from breast cancer. Research has the potential to save lives. Let’s try putting money there.

Are you aware that breast cancer affects a lot more than just your breasts? I was totally unaware of this. I knew you didn’t want the breast cancer to spread to other parts of your body, but I thought breasts themselves just weren’t that big a deal. Boy, was I wrong. Breast cancer and its treatment has serious implications for the rest of your health. The drugs I was on put me at a much higher risk for heart disease. The hormonal nature of my cancer has serious implications for my reproductive system, mainly that I needed to shut it down, forcing me into artificial menopause at 37 that may or may not be permanent. So saving people from breast cancer isn’t saving the ta-tas. It’s saving the hearts and the brains and the ovaries and saving people’s dreams of having children and saving women in their 30s from aging 10 or 20 years ahead of our time.

Are you aware that mammograms don’t prevent breast cancer? This is one where the semantics really get to me, and lots of celebrities can be found hawking the particular line that early detection equals prevention. A mammogram is a screening tool to help medical professionals see whether there are any areas of concern in the breast. It doesn’t keep you from getting cancer. It’s a good tool, and we do need to improve access and affordability (it cost me a few grand to get diagnosed with cancer, even with good insurance), but it doesn’t prevent cancer.

Are you aware that African-American women are far more likely to die of breast cancer than white women are? In fact, the survival disparity between white women and African-American women has actually gotten bigger than it was a few decades ago.

Are you aware that even with a mastectomy, breast cancer can recur?

Are you aware that being young is not a bonus when it comes to breast cancer? Lots of people told me “Oh, you’re young, so you’ll have no problem getting over this.” And this is true of most health concerns. A younger person’s body can replenish itself more quickly than an older person’s can, but this tendency works against you when your body is making cancer. And among women under 60, breast cancer has the highest mortality rate out of all cancer.

Are you aware that men get breast cancer, too? Men make up a tiny portion of the breast cancer cases diagnosed each year, but they are more likely to be diagnosed at a later, and deadlier stage.

All of this is just the tip of a much larger iceberg, but I’ll stop here for now. Just digest this information, and think about it next time you pass the pink display in the store. There’s nothing wrong with buying the product, but understand where those dollars are going may or may not be saving lives..

 

The last normal time

rainbowumbrellaEveryone’s lives are full of before and after moments.

There are the ones that apply to everyone, like assassinations or natural disasters. Then there are the milestones that are specific to each of us. No matter what they are, they divide our lives into before and after. The time that life went from normal to not. At least not until we can figure out what the new normal is.

The last normal time, for me, started in late July, when our air conditioning broke during a heat wave. Because everyone’s air conditioning malfunctions when the temperature reaches triple-digits, it would be a day or so before a repair crew could reach us. At night, deep in a pool of my own sweat, I turned to Jim in bed.  I summoned whatever energy I could to issue a siren song across our mattress: “Tomorrow. Hotel.”

The next day, I lucked out finding a last-minute deal at the swanky, beautiful, art deco place in town. It was just my daughter and I, as Jim felt the need to stay home for some reason. She was thrilled with her first (to her memory) visit to a hotel, and we recovered from the heat by swimming in the pool and buying ice cream sandwiches from the gift shop. That night, nestled in the luxury of cool, white sheets, I got the text message that would come to define my last normal time. I don’t recall the precise words, but it contained the following information:

Keith. Pancreatic cancer. Stage IV.

We hadn’t seen Keith for many years, but I had assumed that some occasion or another would bring us together again. I was never in Keith’s inner sanctum, but he was a masterful combination of dry wit and warmth. Whatever wry quip he slayed you with would be followed with a toothy grin and shrug of the shoulders. “Sorry! Had to!” I replied with something stupid like “That’s really, really bad. Like, really bad. This is a bad diagnosis that will be followed by bad things.”

“We all know what this means,” Jim replied.

Over the next few weeks, Keith would discuss how much time he expected to have left (not much), the options he had for treatment (few) and how loved he felt by those around him (infinitely). Keith’s friends would learn that he didn’t just have the bad cancer. He had the bad version of the bad cancer. I had lunch with a friend who was flying to attend Keith’s birthday party, which was just a few days away. She fretted that he wouldn’t be alive by the following Saturday.

“Oh, I’m sure he’ll be alive next week,” I said. Despite his diagnosis, he seemed optimistic that he had a few months left, at least online. I pondered what it would be like to get a cancer diagnosis at a young age. I had no idea, because I didn’t have cancer. I was a youngish person living a normal life.

A few mornings later,  Keith was in the hospital and not expected to live out the week. He was gone by the end of the work day. Jim and I hugged as soon as we got home. This was the first time we’d lost a friend who was our age. Jim and Keith were born a day apart. Same hospital. A peer. A young person. Going from a friend’s diagnosis to death in just three weeks was emotional whiplash.

“I feel like I was kicked in the head by a horse, stood up, and then was kicked in the head by another horse,” I said. But we had an important realization. The kind of things that are plastered on motivational posters, but feel completely new when faced with a tragedy.

There are no guarantees in life, we told ourselves.We could all be gone tomorrow.

We’re going to be better adults, we told ourselves. We’re going to make sure we have all the right paperwork and lots of savings and all that, we told ourselves. I would start flossing, like I always promised my dentist, because responsible adults do that. Keith is gone, but our lives are still normal and we can use this as a reminder to do better.

That night, I went out in a driving rain storm to pick up carry out. I wrestled my enormous, botanical garden golf umbrella back in the car, becoming soaked in the process. I could swear I heard laughing from the passenger seat.

“Good thing you have that giant umbrella to keep you dry.”

“Oh you shut your mouth,” I said to the empty air. Giant grin. Shrug.

I knew Keith would never make a smart ass remark to me again. I would never see that smile again. Because Keith was gone, but I was a normal person, getting a carry out order on a normal week night. My normal person problem was that my umbrella wouldn’t function properly and I got soaked.

Less than a week later, a nurse would tell me that I probably had cancer. The difference is that my cancer had treatment. I was facing hair loss, nausea, pain, vomiting, the amputation of body parts, chemo brain, finger-nail loss, and many, many more things.  And my road has been comparably easy. Keith faced death.

At first, I thought Keith’s death would serve as one of my milestones of loss. The First Loss of a Friend Who Was Reasonably Close to My Age and Died Before Their Time. I thought for sure that I would go on with my own existence with Keith’s death as a reminder that there are no guarantees in life. Keith’s diagnosis and swift death will always be linked to my own diagnosis in my mind.

The final time I looked at the divide between those who’ve had cancer and those who have not from the Not side of the fence. I didn’t know it, but I had multiple cancerous tumors in my body. I was about to have an after that was irretrievably changed.

It was my last normal time.

Checking in, all burnt and toasty

So, it’s been a while. Mostly, I’ve been ok. For a long time, I didn’t write anything because I was too tired to write. Then, I started to feel better, and I was too busy living my life to write. In the interim, the big thing in cancer and life in general is that I finished radiation.

I’ve gotten a lot of questions about this, how it all worked and what exactly happened. Mostly, radiation was a non-event.

About 10 days before my six weeks of treatment started, I showed up for a simulation. This is where the medical people decided on my exact treatment plan. I spent a lot of time lying on a table with my arms above my head, not moving (this is a theme) while they figured out exactly where the radiation beams needed to go. I left the simulation with my chest looking like a roadmap. I had blue sharpie marks that formed radiation targets, plus several freckle-sized tattoos. I was told to avoid washing off the sharpie marks leading up to my first radiation day. Oh yeah, you can shower like normal, but don’t get the marks wet or lather them up. OK. Sure.

Miraculously, the sharpie marks were still in place when I arrived to the radiation center on the lower level of the GBWTWCCC. Because I had to go five days a week, the experience became routine quickly.

I’d arrive, scan my identification card that had the barcode, and then go into the changing room. Like at the gym. I’d change into a robe and go out into the waiting room until one of the therapists who worked on my machine retrieved me. The radiation department has a distinctly different culture than the chemo center. At the center, people sit for hours, faces wan and tired, drugs dripping into our veins. The nurses are upbeat, but it’s still depressing, and there’s the sense that everyone is walking around on tiptoe.

Radiation moves much more quickly. Once you get into the room, they ask for your musical selection. I usually chose mid-90s alternative rock. It’s cliche, but somehow listening to the music that was the soundtrack to driving around Dearborn, Michigan in my sky blue Ford Escort in high school made the process easier. Sometimes the previous patient’s music was still playing when I arrived and it seems that other patients have similar ideas. I never heard anything that wasn’t at least a decade old in the six weeks of treatment and most of it was at least from the 80s or earlier. Everyone is very cheerful as they tinker with the machinery, like a really fancy auto repair shop.

The radiation room doesn’t look much different than any other x-ray room. I’d climb on the table and put my arms into position over my head (usually that was the time that my nose would start to itch), and then I’d have to remain like that until it was over. My usual room was all business with nothing to look at. A few times, I lucked out and they had to treat me in a room that had track lighting and a lovely floral mural on the ceiling. That was nice.

I’d lie there for 20 minutes. The machines would whir and move around me. Usually, I closed my eyes and tried to treat it like a nap but I never felt rested. Then it was over. I would change back into my clothes and get on the train for work. Things run on a prompt schedule. I’d usually smile and nod to other patients but most of us were trying to get in and out and on with our lives.

Overall, it was mostly a big hassle. Where chemo was exhausting and had lots of drama, radiation was more like a mosquito buzzing through an otherwise quiet room. Annoying. I’m one of those people who likes to toast their marshmallows slowly, holding it close to the fire but not in the flame, so that it develops a toasty brown burn. That’s basically what happened to my skin. I dusted myself with corn starch and applied lotions as needed, and I got a mild brown toasting. By the end, I was pretty tired, but that’s because getting to the cancer center every day just made the day more hectic.

By all accounts, all of the treatment that I’ve had has done its job. The tumors are gone. I made it out of radiation with fewer side effects than a lot of people endure.

I’m now almost two months out from radiation. It seems like a long time ago already. My skin is almost fully recovered and I’m back to looking like an untoasted marshmallow. And now life goes on. I hope I never see the lovely people in the radiation department again.

 

Looking back and looking forward

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(Photo licensed by Wikimedia Commons.)

Now that I’m more than halfway done with cancer treatment, I can start piecing together some perspective on this whole thing.

The day after my cancer diagnosis was not as bad as I’d expected it to be. For the first time in more than a week, I wasn’t living with the anxiety of wondering what was growing in my body. I wasn’t compulsively checking my phone to see whether I’d missed a vital phone call. I knew. Now that I knew, I could figure out how to deal with it. I almost felt upbeat.

 

That afternoon, my husband and I met with one of the cancer center’s breast surgeons, who informed me that my cancer was at stage 2. I had one really big tumor, a smaller tumor and lymph node involvement. This meant chemo, which would be done first. My surgery was four to six months away, she said. I asked her to repeat herself. She did. Then she said the words that were the most shocking to me of the whole process.

“This is curable, but this is going to take a year.”

It had been at the back of my mind that I might go into this meeting and learn that my cancer was so advanced that there was nothing they could do. At the start of this process, a long-time friend died of pancreatic cancer three weeks after he had been diagnosed, and that experience definitely reinforced my sense of mortality. I knew that it was unlikely my cancer had metastasized into the rest of my body, but stranger things have happened. But beyond that dark corner of my mind, in the logical part of my mind, I expected to be at stage 1, or maybe even stage 0. Things start at 1, right?

I knew from my research that stage 1 breast cancer treatment usually consists of a lumpectomy with radiation or a mastectomy. With either of those, I figured that by my birthday, I’d be done or close to it. By the time we were drinking our New Year’s champagne, cancer would be a distant blip. A weird fluke that disrupted our year. I even fantasized that I could get away with getting over it without telling my parents about it. So learning that this was not going to be a short-lived detour was totally unexpected.

That evening, I went back to the hospital to get an MRI to see if there were any suspicious areas that hadn’t been detected by my previous imaging (spoiler: there would be). I had to lie stomach down with my arms over my head, and I had to hold stock still the whole time. This was my first glimpse of my life for the next year. Every appointment, test or procedure would necessitate another appointment, test or procedure. The Roller Coaster from Hell had arrived and I had to get on because the platform I was standing on was disintegrating.

I was relieved that I had something treatable, but as reality set in, so did anxiety and depression.  How would I manage my new job? Would they even be willing to accommodate me? (My employer and coworkers have been amazing and supportive). How would we manage things like making dinner and housekeeping? (Take out, and things are much messier). How would I manage parenting a three-year-old? (Not very well, but we’ve survived).

The great paradox was that I felt fine physically, but I had multiple tumors of one of society’s most feared diseases growing inside me. Emotionally, I was much more of a wreck. I wrapped myself in depression and anxiety and added a layer of anger that my body had betrayed me. I tried to stay positive, but waiting for treatment to start was miserable. While I waited to get my port installed and schedule chemo, it could be spreading throughout my body, I thought. I was facing so many unknowns, including the biggest one–what if I go through all of this, and it comes back? What if this year, turns into the rest of my life? What if this year is all I have left?

Those days were more than six months ago.  I’m still on the roller coaster, but with surgery and chemo behind me, I’ve passed two of the steepest parts of the journey. As each of the two stages passed, a slight weight lifted from me. For the past month, I’ve felt the best I have since I started treatment. My hair has started to grow back, although I’d hoped that by now I would have a 1960s Mia Farrow thing going on. I can spend a day at the park or shopping or at work without requiring a nap.

Even though I’ve been on the roller coaster for a long time now, the exit is still a long way off. This week I start radiation, which will mean a new set of doctors and nurses to get to know. A new set of routines to figure out. Another set of side effects that I know about ,generally, but have no idea what it will look like for me. Not to mention, I have to get myself there five days a week. And once radiation is over, I’m still not done. But so far, it looks like all the treatment has done what it’s supposed to do. I can start thinking about life after cancer. What I want is for my reconstruction to be complete. What I want is for my hair to grow back. What I want is to get my port out.What I want is to teach my daughter how to ride a bike.

What I want is a vacation, where there are no roller coasters.

 

 

Things I didn’t get about cancer before I had it (Vol. 2)

This is the second installment in Things I didn’t get about cancer before I had it. After several more months, of course, I’ve discovered even more things that I didn’t know before.

Here they are:

Breast cancer doesn’t just affect your breasts

Before having breast cancer, I just assumed that the disease’s impact was related to your breasts. Obviously, I knew that it could kill you if it escaped through the lymph nodes and got to your internal organs, but if that didn’t happen I figured all would be well. Since breasts aren’t vital organs, I thought there wasn’t much else to worry about. It’s not like they’re lungs, right?

But that was wrong.

Breast cancer actually has serious implications for the rest of your health, that I’m still working to fully comprehend. My heart and cardiac system will need special attention, likely for the rest of my life. My reproductive system is totally off the rails.

Due to numerous circumstances, I’m essentially in premature menopause. More times a day than I can count, my blood turns to fire and flows up through my body to my head, where steam pours off the top of my scalp and out of my ears. This scene from Sex in the City makes a lot more sense to me now. I am not ready for this.

You have no more privacy.

You will be asked about your bowel movements. By lots of medical professionals. In front of whomever happens to be around.

Eyelashes are important.

By the end of chemo, all the microscopic hairs that I didn’t realize were on my body were no longer on my body. I was as slick as a seal. My neck, arms and legs all felt like they belonged to a newborn baby. Unfortunately, this also meant that I lost things like eyelashes. On the average day, you don’t think about the job that your eyelashes are doing. But as my lashes continued to dwindle, I discovered that they had previously done a pretty good job of protecting my eyes from wind. Every morning, when I walked to my office from the train, wind coming off the Mississippi River would cause my eyes to tear up as though I was crying. I would walk the two blocks, on aching legs, with liquid streaming from my eyes.

Or maybe, I really was crying and blaming it on no longer having eyelashes.

 

I really love nurses

Nurses make everything happen. I have some wonderful physicians, but nurses are the ones who answer the majority of my calls when I have questions between appointments. They’ve been the ones to drop everything and hug me when I needed it. They’re the people who will put another blanket over you because they can tell you need one, even if you haven’t asked for one. They know everything there is to know about what they do. They know everything about me and how I’m being treated and they know what I need before I know I need it.

They need to be paid a lot more, that’s for sure.

 

 

 

The big show and the new me

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Can you guess how many sports bras are in this photo? No, really. I lost count. I tried on every one they had.

*This talks about breasts and some gross surgery stuff. You’ve been warned.

“At least once a week, someone asks me if I can fill them up with beer.”

That’s the resident who’s delivering the first injection of saline to my tissue expanders. It’s a few days after my mastectomy. For the next several weeks, I’ll visit the reconstructive surgeon’s office where a nurse or resident will produce The Syringe of Nightmares and inject saline into my temporary implants. The plan is to inflate them to the size I want to be before I start radiation. The needle doesn’t hurt because I’m still numb, but the injections will always produce pain down my arms and sides for a few days following.

I respond that I am puzzled that people make this request. I don’t think you would want something carbonated in there. Vodka would be the way to go. Gin, rum or whiskey could also work.

As I sit here now, my surgery was seven weeks ago. The short answer is that everything went great. The surgery did what it was supposed to do and the pathology report showed that the chemotherapy had been effective in shrinking my tumors. Recovery from a bilateral mastectomy is much more intense than I’d previously given it credit for. Mentally and emotionally, I’m doing much better than I thought I’d be. Here’s what happened.

We arrived at the GBWWCCC four hours before the surgery was to begin. I went to the nuclear medicine department where they put tracers into my body so they could see which lymph nodes my tumors drained to. I spent most of the time with my eyes closed. The surgery was about five weeks after my final chemo. I had just started to feel human again, but was nowhere near full strength (I’m still not). I was already tired when I arrived at the hospital and spending hours in a pharmaceutical-induced nap sounded like a good idea.

My family tried to talk to me, but I told people that I wanted to avoid conversation to keep my mouth from drying out when I wasn’t allowed to drink anything. The whole truth is that I didn’t feel like talking.

Eventually, I was called back to the pre-op pod (this hospital is big on pods) and had to put on an enormous purple thing along with matching purple socks. Jim and my parents rotated through the two visitor seats. At least a dozen doctors, nurses, fellows, residents and medical students paraded by to have me explain why I was there and then explain it back to me. Everyone on both sides of the knife was fully aware and informed of what was going to happen and I felt confident they wouldn’t take the wrong body parts.

As I waited to be wheeled out, my father told the nurses that he had been my high school English teacher. I don’t know if he said he was also my father, so they may have left work that day thinking their patient had brought an English teacher to her mastectomy. Some wonderful person gave me a drug that had extremely enjoyable effects and I loudly announced that “there’s a party up in here!” Then they wheeled me into the operating room, where the surgical team greeted me cheerfully as they milled around and put their messenger bags away while they got ready for several hours of operating. This would be my last few conscious moments as a person in possession of all the body parts I had when I was born. The anesthesiologist had me take 10 deep breaths, and of course I didn’t make it to 10.

In what felt like a few moments later, I woke up to see Jim and my parents looking at me. Someone asked me how I felt. I looked at Jim and said “Well, that was a pile of piss.”  If that seems like an odd thing to say, it’s from the episode of Buffy the Vampire Slayer where Spike goes to Africa to fight the demon to earn back the soul he lost when he’d been turned into a vampire. He walks out of the cave, bloody and bruised and says “Well, that was a pile of piss” while lighting a cigarette. I thought this reference obviously conveyed that I was battered but not broken, down but not out, etc. My meaning should have been perfectly clear, and I would have thought that making a Buffy the Vampire Slayer reference the first thing out of surgery would be impressive, but from the way they stared back at me it sailed clear over their heads. (In Jim’s defense, what they actually heard was something like “wzatwzpylpizz” mumbled very quietly.)

At some point, I was wheeled to a hospital room and got a look at the damage. The nurses told me my plastic surgeon had “made me look real pretty” and I reflected that nurses sometimes have odd definitions for pretty.

In reality, though, it wasn’t as bad as I’d imagined it would be. After my breast surgeon removed the breast tissue, the plastic surgeon stepped in and gave me the tissue expanders. The surgical team had also kept my nipples in place, which I know sounds amusing to other people, but it’s probably the thing that I am most grateful for. Under copious amounts of padding and the surgical bra, I looked like I had a set of oddly shaped breasts, but breasts just the same.

The hospital released me the next morning, and I’m grateful that I had so many people to pay attention to my discharge instructions because I was too loopy to understand most of what was said to me. Modern pharmaceuticals took care of the pain, but left me in a haze.

The worst part of my new reality was dealing with the drains hanging from tubes that exited my body near my arm pits. The tubing carried fluid out of my body and into a receptacle at the end that I would have to empty and measure every day. The first few days, it was red and bloody, but it eventually turned into a yellowish color. It was every bit as gross as it sounds. The drains lived in the pockets of a terry cloth scarf thing the hospital gave me. They made many aspects of life unpleasant. One night, after a shower, I was switching them into a dry scarf and accidentally dropped one. It fell and dangled near my thigh, which felt like someone had given it a good yank and I’m sure everyone within a three-block radius was aware of it. That hurt like a motherfucker.

February is a blur. I spent the month wearing the surgical bras the hospital sent me home with, button-down flannel shirts that I’d found on clearance at Old Navy because I was unable to lift my arms over my head and yoga pants. Mostly, I slept and colored and went to various medical appointments including my weekly visit with the Syringe of Nightmares. Having my chest out of commission made a lot of basic movements, like sitting up, difficult and it was a pain in the ass to keep from raising my arms, (doing otherwise could mean the expanders could slip out of place). The upside of being a giraffe is that I can grab things on shelves that lots of other people can’t reach. But it was still rough. When I decided to start walking to regain strength and stamina, a simple stroll over flat ground left me sore and nauseated.

Once I hit the 30-day mark, I was allowed to put things over my head again, which was a welcome change.

And basically, now, I’m alright. I feel the closest to normal that I have since I started chemo.

Radiation is going to start soon. I’ve graduated from the surgery bra, which I’d deemed The Velcro Monster, into wearing sports bras. I’m still sore, mostly from the weekly visits to the Syringe of Nightmares. The tissue expanders look weird. They’re like if you crossed a rock with a water balloon and I walk around feeling like Jayne Mansfield because I’m conscious of them all the time. But, I have the energy to put on make up now. My hair is growing back and my scalp is almost not visible. I feel the closest to normal that I have since I started chemo. Except with snow globes on my chest.