I just spent the last week believing I was going to die, and very soon.
And listen - a lot of things have happened since I last blogged. I’ll get to all that in time. But I’m writing this today because I’ve never felt my perspective shift so suddenly and completely as this. And it’s really messing with my head.
As many of you know, the first time I was diagnosed with breast cancer I was just 40 years old. It was my first mammogram, I had no symptoms, and there’s no history of cancer in my family.
I was asked, quite a lot, if anything had changed for me because of it. You know, stuff besides the double mastectomy, besides the hormone therapy and people staring blatantly at my boobs as if to see - what does cancer look like?
And while there were small things - wishing I’d eaten more organic apples, wondering why on earth had I ever smoked in college? - for the most part the question irritated me. Like, How dare you. I’m fine. I’m the one who is going to handle this well.
And in truth, about a year later, it was like I’d never had cancer at all.
****
A lot has happened since then. Kind of all the things from the “Big Book of Stressful Events” that you never want to author.
I switched jobs to support a school district that was about to be taken over by the state. And even though it was the most stressful, and dangerous, situation I’ve ever worked in, I can easily say I have no regrets.
I divorced my husband of 18 years. And even though it was the right thing to do, I don’t think I’ll ever recover from the disappointment that our marriage couldn’t survive my illness.
Other things happened. I resigned from a toxic work environment. I started a new company. I was followed by a Private Investigator. I drove my long-suffering mother to the ER even as she tried to jump out of my car. No regrets.
I moved, three times. Got screwed over by land lords and moving companies, and lost thousands of dollars in the process. I regret that I suppose.
But then I fell in love. Swiftly, and hard, and out of the blue. As if he was sent to me, right to me, to pull me out of a crash landing. We married.
****
And then, just two months into our newly-weddedness, we found a lump. Right in the same spot my original cancer had been found. Which is crazy, because isn’t that why I’d had the double mastectomy in the first place? To eradicate any possibility of it coming back? If there’s no breast tissue, how can there be breast cancer?
I shouted all this to anyone who dared come within listening distance.
But I bucked up. Cuz I’m a bucker-upper-er. I powered through three surgeries in five weeks. I had MRIs, CT scans, bone scans. There were doctor’s appointments, every day, on top of all the other stuff. On top of running my own business. On top of the blessings and busyness of a blended family. On top of all the normal daily stuff, like dishes, and selecting an acceptable toothpaste. On top of keeping the dog alive when there are so many shoes to eat. I didn’t (much) complain.
****
But then they found a new thing, in my lung, and something in me froze. Insurance wouldn’t cover the PET scan my doctor had ordered, so we waited for what felt like my sentence - my treatment plan. Insurance decided (but not my doctor, because what does he know, right?) another CT would be permitted the following month, so we steeled ourselves for the waiting.
My husband raised some hell here and there, got to know schedulers and nurses on a first-name basis. And before you know it, there I was getting another CT scan. We kept our phones on around the clock. Ringers were set to obnoxious tones, volume to the max. We were “those people” in church pews and classroom Mother’s Day Teas that everyone rolls their eyes at when the bells start to ring.
And still, if you would have asked me if my perspective had changed this time around, I would have still deflected. If anything, I was more cynical. I didn’t want this new knowledge that maybe there’s no rhyme or reason to even the best care. That the experts can still be wrong, any ‘ole time. That all the statistics to assure you your cancer isn’t coming back are still just numbers. Numbers don’t know you; numbers don’t care about you. And the people who end up deciding your fate are sometimes just people whose job it is to chart your risk in terms of the numbers that come with dollar signs. I tried to not think what would happen if we had no insurance at all.
****
And then last week, there I was in a big-important-business-meeting and someone knocks at the door and asks for me. Which was odd, because I was just a visiting consultant, it’s not like I worked there. But I didn’t feel anything at the time beyond a broadening curiosity. So I excused myself to the reception area where I found my husband, looking handsome and too-tall for the room. Because I’m so awesome with words, I put together this sentence: “Uh, what are you doing here?”
He was there because my doctor had called. Which I took as a good sign. My husband is just the type of guy who will go out of his way to tell you something wonderful to your face, because it feels good. Because it’s so very often what’s best.
And there was good news: the spot on my lung was likely just a remainder from a bad bout of bronchitis in January - nothing to worry about at all.
But the scan also had found a new thing, all by accident. And if we hadn’t had the lung scan it would have likely gone not-noticed at all.
The new thing was a spot on my liver. A big spot. A big spot that wasn’t there just a month ago. And my doctor, who is a very here-are-the-stats-and-why-you-shouldn’t-worry kinda guy, was suddenly, “very concerned.” Something deep within me began to drop.
I left the big-important-business-meeting, with as much grace as someone can when a room full of strangers knows something awful has just happened to you. And we began to drive home. By 4:00 I was in another CT scan, this time just of my liver.
We had the results back within the hour. Which you always think is just what you want - to know your results right away. But what I learned is that you really don’t want that. At. All. Turns out, being on the “stat” list ain’t good. So now another doctor was added to the “very concerned” column. And we had three long days, including the slow of a weekend, ahead of us.
****
I was supposed to start radiation Monday morning, so we called every doctor’s office to find out, Am I still doing this? Had plans changed? Like, what the hell is happening? We were told to keep with the plan unless we heard otherwise, and I repeated to myself that “no gnus is good gnus.” So come Monday morning, after dropping the kids off at school, there I was at my appointment ready to get all radiated and shit.
But instead of heading into that procedure, we were diverted to a small, very white, anonymous room. The kind of place where they should take your temperature and tap you on your head and send you home.
In comes my new doctor - a youngish, very confident, lovable fellow who likes to joke about his awkwardness and his new son and his height - and he proceeds to close the door and tell us what he, and the other experts on my case, believe to be true.
There was no eye contact. And while my husband and I differ on what we thought we heard in those mind-numbing moments, we both clearly heard that he was “very concerned,” which had me mentally side-barring over whether doctors receive some sort of script to make it easier for them to share awful news in just the right way. And man, I hope they do. I hope they have a world of supports to help them through such moments.
Because then he had to say a slew more words that I’m betting he’s spent a career trying not to say. Things like “metastasized” and “spreading” and “end of life” and “I’m sorry.”
But I feel fine, I thought, or maybe I said it out loud, I have no idea. I tuned deep inside my body, scanning every organ, every limb, with no alarms. Isn’t there a chance this is a mistake? But “statistically speaking,” there was no mistake.
The decision was made to put off radiation for the breast cancer because it would be too taxing on my body for “what comes next.” We were told that a few of his patients, with the same diagnosis, “actually lived more than a year.”
****
Have you ever been to a Cancer Center? They are pretty impressive places. The one I go to is very modern, lots of white. Medically-important-looking people walk with great purpose. They all wear great glasses. They ain’t fucking around. Everyone bustles there. Soothing spiritual music greets you in the light-filled atrium. Sometimes you get offered free massages. But when you’re ugly-crying to the valet parking people walk a pretty wide berth around you. No one wants to catch what you got. The entire building exists just to prevent this very moment: there is no longer hope. No one wants to acknowledge that it could just as well be them.
For the next two days we did not mess around. We started making financial decisions as if this was the last year we had together. We bet on a Cavs game. We started cashing in retirement.
We began planning a family trip to Scotland. I began picking out my husband’s next wife. We gave the kids every dang thing they asked for - Ice cream for breakfast? Sure! Another round of snuggles before bedtime? Hell yeah! Gold fish and the special glow rocks and the whatnot? Yes, yes, yes…a thousand yesses!
But in between, the sadness. We made weird noises, horrible sounds of uncontrolled sorrow, when we cried. We wiped each other’s faces of tears and drool. We woke in the middle of the night wondering why our faces were wet, only to remember: This will all be over soon.
Immediately I set about finishing the photo wall in our bedroom. We planned the patio, the fire pit, and the place where we would sit up at night to listen to the rain.
We took the long way home. We rolled the windows down. We wondered - Has the wind ever felt like this before? Has the air always smelled this pink?
I thought about the taste of home-grown tomatoes a lot. I didn’t once wear high-heeled shoes.
So few things matter when you’re dying. Not the broken sink and all the dishes are backed up. Not the weird neighbor who mows his yard at 7:00am on a Saturday. Not that guy who just cut you off on the highway. Not the friends who betrayed you. Not all the people who were cruel. Not the fact that they changed the recipe of your favorite ice cream and it’s just not the same anymore.
You cry about it, about all of it, but not because you care. You cry because it doesn’t matter anymore.
You don’t worry about your money, and how long it will last. You don’t worry about where you’re gonna live. You don’t worry about work. You do not give a fuck.
Nothing matters but your family. Your friends. Your moms and dad are safe. Your brothers and sister text. Your children’s faces when they say they love you.
***
Yesterday morning, after dropping the kids off at school, my husband came home to me and we looked into each others eyes and we stopped the pretending you have to do when you’re keeping things together. Like, you can’t be in line at the dry cleaner with your face falling off. So we just sobbed together. Those ugly, honest sounds. And the phone rang.
It was my doctor. The one who just days before had to tell us the words that no one ever wants to hear. But this time, he told us that there were two more doctors on the case. And they disagreed with the diagnosis. That lovely man sounded downright proud to be told he was wrong. He was fucking giddy to think he was wrong. They needed just a simple MRI to confirm what this time, they hoped would be true.
As we hung up the phone, something in the air shifted. Perspective. My husband said, “Last week we were hopeless. Today we became hopeful. And tomorrow, we’ll find out who is right.”
And I got the call today. It’s not metastasized cancer. The statistics are something like 1,000,000:1 - and this time, it’s good to be the one.
I can't believe it. I’m the One.
As a teacher who began the same time you did at LCS. I was saddened to hear of your illness, keep fighting your family needs your amazing strength. I will keep your family in my prayers
I love you Erin❤