My Belated Abortion Story

I was one of those super careful pregnant women. I drank no alcohol for months before I conceived. I sent back salads that arrived with unpasteurized gorgonzola that wasn’t mentioned on the menu. I sipped the water leftover from steaming my organic broccoli because hey, why let all those vitamins go to waste. I did prenatal yoga, and took classes on staying fit during pregnancy, which I did. I felt amazing. I had no morning sickness. If I had known how kickass of a pregnant lady I’d be, I’d have done it many times over.

I loved getting pregnant, I loved being pregnant and I love being a mom. I love my daughter more than I can possibly describe. And I’m late to this party, because there’s one more day until the votes are counted in this first post-Roe election, where my state banned all abortions with no exceptions within minutes, but here is what I have to say about abortion. (I don’t have time to get this to an editor, so forgive any clumsy language on my part).

In the summer of 2015, Jim and I started talking about having another child. Our firstborn was 3. Those memories of dirty diapers, sleepless nights and a painful c-section incision were far enough in the rearview mirror that we could look at each other and say “let’s do it all again!”

I made an appointment with my gyn to make sure I was in tip top shape to get pregnant, but we also decided to just stop using any birth control. We figured time was a-wastin and after all, I was fine. Nothing is ever really wrong with me. At that gyn appointment I got an all-clear, until I showed my doctor this little hard spot on one of my breasts (if you know me, you know how this part of the story ends). She sent me for some tests a few days later, which began with an ultrasound that showed something very disturbing that I would later learn was a tumor slightly smaller than a tennis ball, one of three currently growing in my breasts.

Immediately, they readied me for a mammogram. Everything was moving quickly. I didn’t fully understand all the activity around me. I gathered I was going to have to go into a different room. I realized I was probably going to be late getting back to work. They perfunctorily asked me a question that made me stop cold: Any chance you could be pregnant?

Yes. There was.

A small chance, but it was there. And I wanted to be pregnant. And suddenly I wanted to not be pregnant very, very badly.

After consulting some calendars, it was determined that I would need to wait until I could confirm whether anything had adhered to my womb in the last few weeks.

People can, and do, go through breast cancer treatment while pregnant. It’s not impossible. However, as soon as the possibility of having cancer hit me, I had only one goal: survive for my three year old. That was it. Everything and everyone else was unimportant. I needed to survive for the child that ran screaming through my living room and not for anything that might exist in something barely past a theoretical stage.

People can and do go through cancer treatment while pregnant. I know that my oncologist has treated pregnant women for breast cancer, although I don’t know if they had my exact cancer profile. However.

I felt, and still feel, that my primary obligation is to the living, walking, running breathing child I have. The one who I brought into the world entirely on purpose when I was damn good and ready. The one who spread out the contents of her bookshelves on her mattress and went to sleep on them because she “wanted a book bed.”

If I was going to get myself and my family through this, I wanted nothing limiting my ability to get treatment. I needed to make my decisions based on their ability to improve my survival alone. For the people in my life. And also for my life. I do feel that I count, after all.

And then there’s the matter that making someone go through cancer treatment while also being pregnant sounds unspeakably cruel. If I hadn’t had a child already, I may have had different feelings.

But back to those days waiting for my mammogram. I prayed that I was not pregnant, but any pregnancy would be extremely early. I’ve read the anti-abortion rhetoric. People are going to read this and say that if I didn’t consider this to be a baby then I had no business being a mother. But here’s what that argument misses:

My emotional attachment to a pregnancy at that early stage does not reflect the scientific reality that I do not currently have a fully formed person inside of me.

When would that become a fully formed person? I honestly have no idea.

And I know that some people will read this and say that I should have accepted the good with the bad, the blessing with the tragedy. And if someone feels that way about their own situation, then I support them in making that choice. I will supply their family with a lifetime of casseroles, do their laundry and drive them to as many appointments as I can. I support someone’s right to not have an abortion, which is why I also support affordable childcare, paid family leave and universal healthcare although those are all rants for a different time.

Meanwhile, because I am a planner, I researched. I looked up abortion services in my city and state, and they were few and far between. I looked up abortion services in Illinois, which sits just across a river that I can bikeride to from my house. They were much easier.

And as I write this, votes have already been cast in an election that will have drastic impacts on a woman’s right to make that decision for many decades. Many of you have probably already cast your ballots. But just in case you have not:

If you’ve read through this and you’re a pro-choice voter who supports pro-choice candidates, then….thank you! Me, too.

If you are anti-abortion, and you read about my experience and had no sympathy, no empathy, no equivocation, no sense that maybe, just maybe a woman facing cancer should be able to make decisions about her reproduction based on her own healthcare needs, then go in peace. I expect you to vote your conscience and I know that I am unable to change your mind. Also … fuck off a little.

But if you vote against abortion, and you’ve read through this, and you’ve thought “well, I mean…” or “I can see how in that situation…” or “You know, I can see….” or even just “um….” then I would like to inform you that you are actually pro-choice. When people say “Abortion is healthcare,” this is what we are talking about. It’s me. It’s my daughter. It’s the family that I have. It’s my survival. You might go to an anti-abortion church, and you might support anti-abortion candidates and you might have an anti-abortion bumper sticker. But you are actually pro-choice. And now is the time you need to vote for it, because my situation could be any family you know.

If you’ve read this far, I should tell you that I wasn’t pregnant and I didn’t need an abortion, but it could have easily gone the other way.

Good night.

Five Years: The Red Pen Anniversary

I’ve had the month of August circled in red pen in my brain for months now.

It wasn’t intentional. It’s just something that came about after doing the math and realizing that this month was five years since I was diagnosed with breast cancer. It feels like forever ago. It feels like yesterday. It happened to me. It happened to someone else. I never think about it. I think about it all the time.

I don’t know what I was expecting from this anniversary. The actual day was last week. I woke up and drank coffee. I ran errands. I got my daughter ready for online school. I ate a few meals and went to bed. Nothing life-splintering happened. Someone less obsessed with observations and anniversaries wouldn’t notice.

I’ve heard that people who go through a traumatic experience remain caught in the lifestage they were in at the time the trauma occurred. So if you have a trauma at 13, part of you remains 13. I don’t know how it works when you have a trauma at 37. My lifestage is pretty much the same. But there are times when I feel like the past 5 years never happened. Like it’s the day before I found the lump and my biggest worry was getting to the Metrolink train on time.

When I was first diagnosed, I expected that I would go through treatment, surgery, and that would mostly be it. I was told that there would be some maintenance medication, and that I’d check in with my oncologist twice a year. I figured life would be normal by now.

It’s not. I am a status known as No Evidence of Disease, or NED, but cancer is still very present in my life. Twice-annual check-ins? No. I’m no longer on a first-name basis with the people at the coffee kiosk in the cancer center lobby. My hair has grown back. In fact, it got so long that I couldn’t take it anymore and had it chopped above my shoulders. But my calendar is littered with regular meetings with specialists, therapists, and once a month, a big needle that shoots a small tablet of medication into my stomach. Yeah, it’s a shot of a tablet.

And the side effects are not a picnic either. Mainly, the hot flashes. Calling them heat detonations would be more accurate. The maintenance drugs have put me in a sort of artificial menopause, so I’ve invested in cooling pillows, cooling mattress pads, cooling night shirts and an assortment of ice packs that I insert into my pillow cases before bed. I can start making a sandwich feeling perfectly comfortable, and by the end, I am sweating from every pore as though I just did a hot yoga class in Death Valley during a heatwave. I don’t have the same energy level that I used to, but if the nuclear bomb of heat is the biggest threat to my comfort, I have to say the weight gain is the biggest threat to my vanity. I admit, I’m not a fan of this.

I have started acupuncture to deal. Yes, I’m so uncomfortable that I’ve started paying people to poke me with needles twice a week. It’s helped.
Despite cancer’s continued presence in my life, I’m incredibly grateful that I’ve made it this far. I wasn’t prepared for the loop that cancer threw me. But dealing with this loop has made me better prepared to handle the other loops. It wasn’t always this way. For my first year or two after treatment, I felt constant anxiety. Even minor choices felt like life or death situations. I would get stressed if restaurant menus offered too many options.

But now, I feel like I can handle It. Whatever It is, It’s probably not the Worst Thing I’ve Ever Heard. I have a new bar for the Worst Thing I’ve Ever Heard. Don’t get me wrong, there are things I definitely don’t want to experience, but I can feel the difference between a bummer, a temporary setback, and a life-splintering threat to my existence.

I wish that I had some sort of wisdom to offer. I was told that there’d be wisdom. Some deep insight into the fragility of the human condition, or some such. But really, any wisdom or insight I’ve gained as a result of cancer has come with a huge price—physical, mental, emotional and financial.

Instead of receiving wisdom, I have life, and that’s enough.

Returning to the scene of where it all happened

(this actually happened a while ago, but I’ve sat on it.)

It’s weird to sit in the waiting room in the breast imaging center. It’s like going back to eat lunch in your high school cafeteria. You don’t especially want to be there, and you’re not really sure where you fit in.

I’m sitting here because a few days earlier, I told my oncologist that I had a hard spot on what used to be my breast and is now filled with a silicone implant. (Actually, I told his nurse and when he came in the room, he said he’d heard I’d found a lumpy bump, and this is a non-sequitur but if you’re an oncologist, please know that trying to make it sound cute doesn’t make it any less terrifying).

He told me that it was probably necrotized fat, which is to be expected with my type of reconstruction and is harmless except for the fact that it sounds really gross. So I’m back here to get an ultrasound.

Three years ago, I’d put on a gown and sat there listening to flute music while I waited for them to call my name. Impatiently, because I knew I was really fine, this was all just a precaution and I had to get back to the newsroom for deadline. Today, I’m looking at the other women and wondering who’s in the same unfortunate club. Who is rushing to get back to work? Who is here for routine imaging? Who is here because they’ve already found something? Who is going to be told they’re fine, and who is going to be told they have to talk to the nurse who will schedule everything else and answer all their questions?

I didn’t really tell anyone about it other than Jim partly because I didn’t want to worry anyone and partly because I just assume that everyone is as sick of hearing about it as I am. At work that morning, when my friend and I were eating from leftover office-party trays, I mentioned that I had an ultrasound scheduled, so it was good we had food here. I wouldn’t need to take time to get lunch. She casually pried me for more information as nonchalantly as one can, and I explained that I could be told I was fine or that I was dying, so there’s a lot riding on this appointment.

An ultrasound tech in scrubs calls my name, and leads me into the same dimmed sort of room that I had been in before. I lie on the table. She brings out the magic ultrasound wand. Oh, but there’s a catch.

“We’re going to have to do a mammogram,” she says, chirpily. 

“Oh, you must be confused, because I don’t have any actual breasts,” I say, pointing to my chest. “These are reconstructed.”

She assured me that regardless, a mammogram was still required to see the exact placement of the lumpity bumpity, or whatever my oncologist had called it.

As I walked down the hall, the total bullshit of all of this hit me.

I DON’T HAVE ANY MAMS TO GRAM!

But I humored them, they reassured me that a mammogram wouldn’t damage my implants. I did my best to put my implanted breast on the little plate thing, but these suckers aren’t that flexible, so I had to throw my chest out as far as I could while twisting my neck and keeping my head back as far as I could so I wouldn’t get bonked in the nose by all the equipment moving around. Not the worst thing I’ve experienced since all of this started, but still…bullshit, right?

I get led back to the holding pen with the flute music and pick up a magazine to find out how many babies Kim Kardashian has now. This time when my name is called, the face attached to it is familiar.

It’s the ultrasound tech from three years ago. The Trainwreck Face Lady.  I don’t remember her name, and it doesn’t register when she tells me, but I remember her face.

My breath comes faster.

“Were you here three years ago?” I ask. I explain that I think she did my ultrasound when I found my first tumor (I feel like I should uppercase that, like My First Tumor by Fisher-Price).

“Yep, I definitely was. Your name looks familiar.”

Was I so bad that my name is memorable? Am I that case they talk about over drinks? Am I on a wall somewhere?

I lie on the table and she brings out the ultrasound wand. She does her thing. I look at the ceiling. She leaves to talk to the doctor.

I turn to my phone, but it gives me nothing. No reception. No WiFI nothing. I’m on my own while I wait to find out if I’m going to die without even Twitter to distract me. Last time this happened, I told myself that I would be fine. This was all just a precaution and if that ultrasound person doesn’t get back soon, I’m going to miss deadline.

Back in the present, the door to the windowless room swings open and she comes in.

“It’s nothing. A necrotized fat lump. It’s good you got it checked out, but you’re fine. You can get dressed.”

That’s exactly what happened this time. That was what I expected her to say last time. But this is what she’s saying this time. After all the bad things I’ve been told, I’m not sure how to take a not-bad thing.

My brain starts to uncurl out of the fetal position. I’m fine. I’m fine! I can leave. I can go home. I can go back to work! I’m going to meet deadline! I’m fine. For now, I’m fine. I’m fine!

“Oh. OK. Thanks.”

 

 

It’s been a while, but I’m still here.

Like a lot of bloggers, I’m starting this post with “It’s been a while.” So, um… here:

“It’s been a while.”

Still No Evidence of Disease. Which is great.

I’ve got hair again, which is great. I had a perpetual pixie cut for a long time and then I had a perpetual bob until about October, and then it started regrowing. Now, it’s past my shoulders. Almost long enough to be considered long.

But it’s not over. Don’t get me wrong. I feel mostly normal, or whatever I remember normal must feel like. But I’ll be around a little more, because I still have thoughts to get down.

When Breast Cancer Campaigns go right and very wrong

Disclaimer: the following post contains some almost-but-not-really nudity.
I’m in my second October as a post-treatment breast cancer survivor, recovering from what will be my final reconstruction.

Last October, I wrote about the ambivalence that many breast cancer survivors and patients experience during Breast Cancer Awareness Month. For the most part, I ignore the products. I just don’t need them and there are so many I can’t keep up. But two recent marketing campaigns have caught my eye, for both good and bad reasons.

Yesterday I became aware of a campaign by The Icing, the jewelry chain that’s mostly in malls. They’ve taken it down, but not before some helpful people screenshot the sucker. I debated about actually sharing it and giving them attention but as it truly belongs in The Hall of Shame for Offensive Advertising, let’s commemorate it:

Yeah.

<rubs face> 

<sigh>

As a breast cancer campaign, good gravy there’s a lot wrong here.

For people who don’t understand why this is a problem, let me spell it out for you. This company wanted to sell some Breast Cancer products, so they featured the healthy, Cancer-free breasts of a (as far as we can tell) healthy, cancer-free woman. The ad is in the same vein as those who post braless or topless selfies under the guise of breast cancer Awareness. (Here’s a hint ladies: no breast cancer organization has sponsored or endorsed this movement.)

I would find it hard to fathom that anyone who has had breast cancer feels better or more supported because someone else posts their breasts online. I’m not offended by breasts. I love breasts. They’re beautiful, wonderful and useful. I’m not even offended by topless photos. If you’re an adult, you do you. 

This image on its own, without the breast cancer reference, wouldn’t cost me any eye rolls.  I’m offended that a company is using a pair of healthy breasts to appropriate my disease to sell necklaces and hats. It’s exploitative of both the model and of us, but at least she got paid.

Lots of other people in my situation were also offended. The Icing pulled the ad after comments piled up and issued your standard “we’re sorry you were offended” apology. I feel incredulous that no one in their conference room seemed to think this was a bad idea.

Beyond the model issue, I’m not sure what’s being communicated in the ad. Are we supposed to be upset at the injustice that cancer could one day take this perky pair of jugs from the world? Does the model feel fearless about breast cancer? Are breast cancer patients supposed to have no fear? Because that’s an unrealistic expectation. I’ve been praised many times for my courage, a compliment that makes no sense to me as I had no choice in the matter and I was plenty scared. There are, of course, campaigns that get it right.

The advertising crew at Ulta Beauty has its poop in a group.

Notice the difference? Ulta has recruited actual patients and survivors. They’re given the glam treatment, which is not a frequent occurrence when you have cancer. Yes, they’re still selling a product, and that’s fine. The world runs on advertising . That’s the way it is. But this makes me want to visit their store next time I need makeup. They’re depicting us as people, not parts, which is what we are even when the rest of the world thinks we’re not.

Because we are, people.

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)

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

Everyone’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

(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.