the Terrible Things

I’m not a good patient. I have no patience and expect to be feeling strong immediately. This is obviously not the case in the first days and week after surgery. I’m drugged to the gills, it’s painful to move, it’s painful to sit still. It’s the kind of pain that is always present, and isn’t localized to where I thought it should be. What bothers me most is the waiting.  We’re waiting for surgery, then waiting to hear if I need chemo.  At some point, the reconstruction process will start, and another (smaller) surgery for the implants.   If I’m lucky, I’ll be done in 3-4 months.  If not, this shit could stretch out into next year.  The waiting is the worst.  The unknown feels terrible.

Perhaps I would feel differently if my diagnosis was truly terrible.  Perhaps then the unknown would be more comforting than reality.  I’m not sure.  But I do know this: even a “lucky” and early diagnosis is making me crazy.

The biggest challenge has been controlling my own thoughts.  It’s hard not to see everything as a sign – and I don’t believe in signs. I see a bird flying and think that must be what death is like.  I read to Mackenzie, my adoptive little sister, and think, “will I ever see her read?”

My doctors say YES, ABSOLUTELY.  And I know they are right.  But still, if I’m not careful, I end up living in a world of my own making.  But it’s a terrible world where the breast cancer kills me.  A terrible world where I can’t stop thinking Terrible Things.

My friends want no part of this discussion, and I don’t blame them. They are not nearly as crazy as I am, and are much better at living in the actual world, not the terrible one of my own making.  These things in my head, all these terrible things are crazy, they are self-defeating -- yet they feel, at times, so very real.  So real sometimes I can’t take a proper breath.

So I call my Mom.  My crazy comes from somewhere I figure.  And besides, she gets it.  In fact, she’s lived through all the Terrible Things.  She’s lived through a diagnosis of Stage 3 breast cancer, and a prognosis of only 5 years to live.  She’s lived through a mastectomy, chemotherapy, and she didn’t need me to say what all Terrible Things were, she already knew.

“Mom?”  I whispered when I got her on the phone.  “It feels like….it feels like…..I’m having a premonition.”  I told her about the birds.  About reading to Mackenzie. 

She interrupted me:  “Have you calculated how old Mackenzie will be when you die?  Still in elementary school, right?”

I was quiet.  But in truth, I had.

“At some point” she continued, “you came to a moment of acceptance, right?  A moment where you go ‘I’ve had a good life.  It’ll be OK.’  Right?” she asks.

And there it is.  The most terrible thing of all.  The one where you are sure, so sure that you are about to die that you start to try and accept it.  Accept that your family will be fine.  That your friends will go on.  And they will, but this is truly a Terrible Thing.  It’s a terrible, shameful thing, and how did she know?  How did she know the most Terrible Thing of all?

“I remember, honey.” she says, “It means nothing.”

I sob in relief.

At some point I ask incredulously, “You calculated how old we’d be when you died?” 

“Yep. You’d be out of college, and Scott would be out of high school so I thought, OK.  That’s pretty good.”

And then we both crack up.  It’s not funny, not really, but so crazy that it is.

My sense of humor is becoming a Terrible Thing as well.

Later, she shared something from one of her best friends.  To date, it’s the most helpful thing I’ve heard:

“Peg,” she said, “please tell Kim that she can’t believe everything she thinks.”


And just like that, the weight lifts.

Being licked by an orchestra - or - NO ONE TOLD ME ABOUT MORPHINE

When the day arrived for the big show, I didn't quite know what to expect, but I was frightened. I was furious with myself for signing off on it, knowing I would potentially never look normal again. I had a few days earlier indulged my curiosity and looked at the post-mastectomy photos on my reconstructive surgeon's website, only to instantly regret it, as it rendered nothing but massacred chests and torsos. I realize those sound like dramatic descriptions, but go do a google image search if you don't believe me. Even the most state of the art reconstruction is really raising the bar on "grotesque."

The morning of the procedure, I received a deluge of kind comments from adoptive and biological family from my corners of the world. I had hoped that I would handle the day with grace, but that was a far cry from my reaction. Frankly, I was just pissed.  I was pissed that I was facing a life-changing surgery, followed by months of reconstruction, and surgeries every 10 years or so FOR LIFE.

The day before, I had read that doctors are now prescribing tamoxifen to prevent breast cancer from starting.  I felt like punching someone.

But in spite of the love and support I was receiving, I found myself surprised by my completely misplaced anger. A close friend of mine called to wish me luck, and I had to consciously stop myself from telling her to SHUT THE FUCK UP. I was terrible, really. It pains me to think about now.

In any case, I think the nurses realized that from the minute they checked me in and got me in a gown, I was a flight risk. I would convince myself I was calm and that I would get through this with composure, but I actively avoided getting on that bed. The morbid comic relief came when both my surgeons were in the room, and literally took pre-op sharpies and drew boobs on top of my existing set, as well as signed my chest for whatever liability reason. I resembled an absurd trophy. The anesthesiologist ran my IV, and before I could figure out whether they were a man or woman, I was out.

Returning to consciousness happened very much in media res as I was being wheeled to my room. I don't remember being aware of my body, but it being very difficult to move from the gurney to the hospital bed, since I couldn't lift myself on my arms. Since I was dead weight, the nurses got me and the 6 or so lines I was hooked up to situated, and made brief introductions to my soulmate for the next few days, the morphine button.

Such a brief but torrid affair we had, oh darling morphine button. We were good to each other, but also combative. 

I have never understood William Burroughs more. 

With every feeble push of that button, I felt like I was being licked by an orchestra. Although it made me violently ill, I went right back for more. I couldn't keep anything down for the first two days, until the doctors pulled me off of the morphine and put me on Norco, which was adequate, but I felt like I settled. Morphine, we'll always have Northwestern.

I overdid it the first day out of surgery, thinking it would get me discharged quicker, but it turns out that attempting to peek at my stitches, and scuttling over to the bathroom unassisted while connected to a giant IV party wasn't something I was ready for. By the end of day two, it was home time -- down two boobs, but up a silo of more Norco, anti-nausea meds, and most glamorous stool softeners you've ever seen.

A jewel-bright hardness

I haven't touched on the extremely unpleasant business of trying to reconcile why you're going through this process. Obviously, it demands a lot of emotional maturity -- or you could do what I did, and have quips ready and waiting when any sort of raw human emotion revealed itself.

My doctor's go-to recommendation was support and therapy groups for women fighting or otherwise effected by breast cancer. They were exactly what I had imagined -- a circle of chairs filled with bald women in headscarves or wigs. It was a huge bummer. Although we were going through similar treatments, I felt completely out of place. What was mainly addressed in conversation was the lack of control and feeling of self when undergoing cancer treatment. Because I was an extremely early detector, I had none of that -- I had the profound luxuries of certainty and time. My concerns and fears were still valid, but very much minimized in the presence of more troubling immediacies. 

So I kept it to myself. It felt all too Kafka-esque for my liking. I figured there was going to be a month or two of extreme unpleasantness, and then reconstruction, and finally all this would be behind me. No need to to have dramatic "woe is me" moments -- just get through it. Except that method didn't let me actually confront and make peace with that was going on. 

It was at my most scared that I was at my wittiest. Someone would express concern, and I always had a quip ready and waiting to return the volley. I became snarky and insincere, minimizing my anxieties in the hopes that they would disappear that way. I developed this hardness that I was not proud of. Any time a vaguely human emotion would rear its head, I'd have some sort of snappy answer prepared. I never had to interact with it that way. I never had to admit to myself that I was terribly scared and uncertain. A quip was the best defense. 

I only started allowing myself to feel things after my first procedure. When there's nothing to do but sleep and take pain meds, there's a lot of time to think (albeit not the most lucid thoughts). I say "allow" in that because the depth of my duress felt so foreign that they couldn't possibly be mine. I had to realize that because I felt them, they inherently were mine. And that was OK. My jewel-bright hardness was allowed to soften, and that was OK. I was OK. 

What to buy before the big show

First of all, if you think you can do the mastectomy recovery without anyone helping you because you're a-big-grown-ass-lady-and-you-can-take-care-of-yourself-thankyouverymuch -- you are wrong. 

I thought I was just going to take pain meds and sleep at my apartment with two poodles acting, respectively, as my day and night nurses. However, I made the last minute decision to iron out my pride and go recover on my mother's couch. Ok, fine it wasn't my decision. The Catholics know how to guilt HARD.

• In any case, the first thing on your list of preparations for the big rodeo should be someone to help you for the first few days. And not someone you only vaguely know but has a kind heart -- this is an incredibly gross recovery, and nothing is holy. They're the ones that will help you strip your drains when you're nothing more than a semi-conscious hawaiian punch factory. More on that later, but you get the idea. 

• 1 or 2 ace wraps. These will be the security blanket for the next few weeks after the procedure. They provide the right amount of support to your bruised trunk and chest, as well as secures the drains in place, so they're not all over the show. I've heard of people using Spanx, but this is much cheaper and gets the job done. My incisions were right under my breasts, so a traditional bra of any kind of out of the question. 

• Button front shirts. Imagine you have T-Rex arms, practice. This is your range of motion for about a week, which makes putting shirts on a two-man operation. Make your life easier and just get shirts that button in front. I had my mastectomy during late November in Chicago, so I stocked up on flannels. I'd have two that you can switch between, because you're to be wearing them for days on end and want to burn them after this whole ordeal. 

• Ice packs. Several. I'm still making my way through the amount of frozen vegetables that set up residence on my swollen chest. Any heating pads are a terrible idea -- I learned the hard way and woke up with first degree burns, since I didn't have any functioning nerve endings. That's another story entirely though. 

Go buy those things. You'll thank me later when you're not at a crowded Target while on heavy narcotic painkillers. Unless that's your thing. In which case, keep on keeping on. 

Finding your asocial savants

Not to make any sweeping generalizations, but the thing that I've notices about people who are absolutely devoted to their island of brilliance is that they have zero social skills. This is especially true of people in the medical profession, as lives are on the line in a very literal sense.

After my dramatic exit from the previous and conservative breast surgeon, I found myself the head of the department, and as pro-active as they come. Her bedside manner left a whole lot to be desired, especially since any sort of exam is ripe for (clearly unappreciated) humor. I supposed asking her if she's the "chief booby inspector" as she's inserting the longest biopsy needle you've ever seen gets old eventually. Nonetheless, I can wax poetic for days about this woman. She has the pantsuit repertoire rivaling only Hilary Clinton, an extensive collection of avant-garde brooches, and is the tiniest, but profoundly intimidating little Pakistani pixie. 

Those built-in assumptions snuck in again in any consultation I had with her, so I simply lied and said I had a husband all lined up, and that there were work-arounds for having no breast sensation or the ability to breast feed. I lied, Dr. K! It's not a clitoridectomy, for fucks sake. There were more pressing matters at hand, like not having to do radiation/chemotherapy at 25, for instance. In any case, she was my breast oncologist, and I was happy to have her on my team. Next came choosing the reconstructive surgeon, which is really where the asocial fun began. 

He was recommended to me by pretty much everyone in the breast oncology department, which is pretty hard to argue with. I was going in blind because I had already promised myself I wouldn't look at before and after pictures of mastectomies, because frankly, they're terrifying. During my consult, which amounts to nothing more than some light fondling, mind you, he kept saying under his breath, "Good skin, yeah, good skin." I was visibly cringing the whole time. 

But you can't argue with his overwhelming amount of recommendations, so my team was complete. 

Dramatic exits in open-front gowns

Boobs are a weird thing.

There's a lot of cultural and gendered expectations inherently built into any decisions made about them. I didn't realize the full extent of this until I was shopping around for a breast surgeon. Pro-tip: there are lots of things to save money on: buy generic brands, make brown bag lunches, clip coupons. But when shopping around for a breast oncologist, don't be sniffing around for a deal. Get the most respected and tenured your insurance allows. Don't fuck around. 

My first stop for some recommendations was my gyno, who after my MRI was the first to suggest a mastectomy, and in her words, "get those things in a bucket." She's really charming, I promise. She directed me to a perfectly nice surgeon at Northwestern, who specializes in genetic clusterfucks/early detectors much like myself. 

My consult with said surgeon was odd from the outset. She didn't bother to look at any of the information and trees the genetic counselor had put together, but preferred the metric of my age. 

"I'm not really comfortable performing such a drastic procedure on such a young woman," to which my mind drifted into the best time to quote Aaliyah as a retort, "perhaps just wait and see for a few years, have some kids, and then we'll look into what we should do at that point." Not that I'm an ardent feminist, but these assumptions enraged me to an extent that I wasn't prepared for. 

I tried to very calmly explain that I was not in any position, nor did I have any interest to "have some kids and wait a few years," and perhaps I should get a second opinion with a doctor who wasn't still practicing in the mid 1950s. 

This statement was about as ballsy I've ever been to a doctor, and I was very much in a position to make an angry exit -- but it is very difficult to pull off an angry exit while wearing a gown that opens in front. Nonetheless, I swiftly put my coat on over the hospital gown, crammed my shirt in my bag, walked out of the exam room, and just kept walking. The receptionist called after me, but since I was already on a roll, I snapped back, "No co-pay!" and didn't stop until I hit the lobby. 

Hello, genetic jackpot.

I’ve got the genetic make up similar to/if not worse than the hypothetical children of Miss Piggy and Kermit the frog. My mouth is entirely too small for all my teeth, my eyes are too oddly shaped to see much of anything unassisted, and the color of my hair makes me look like an odd Scandinavian exchange student at any family gathering of my dark-haired, mostly olive skinned family. But that’s the superficial end of the equation. Nearly all the women in my family have developed breast cancer very early, and very aggressively.

So this meant that I was going to be the poster child for early detection, if I had anything to do with it. I started going to mammograms when I was 18, and had yearly breast MRIs to monitor my already cystic breasts. So when I had an irregular MRI, there was no shock and awe, I pretty obediently underwent the search for a breast oncologist, as well as a reconstructive surgeon. It was all very matter of fact, there weren’t a whole lot of Dynasty moments at that point, it was just something that my mother, and her sister, and her aunt, etc. had done, and now it was my turn. A kind of morbid family tradition, but one that ended with great fake tits, so there was a silver (silicone? Too far?) lining.  

The procedure that I underwent was a nipple-sparing bilateral mastectomy, with delayed tissue expander reconstruction. At the time I’m writing this, I’m a few weeks out from my exchange surgery, during which the permanent implants will be placed. 

During my search for an oncologist, and the lead-up to my mastectomy, I found that there were very little resources for young women who had caught their tumors or micro-calcifications very early, or were undergoing the procedure prophylactically. Cancer support groups felt very inappropriate for me, since these were women who were going through something (I felt, at least) far more complex, since their chemo and radiation regimens were continually bringing them close to death, and then bringing them back, only to ready themselves for another round. They didn’t have the luxury or time or certainty, and I felt that I did, so any concern of mine felt greatly minimized. However, as I later learned, this procedure is a big fucking deal. It knocked me on my ass for months. 

I was pretty clueless going into the process, and I hope I can arm other women with the right expectations.