The Menu of Mastectomies & A Dinner Party from Hell

Coming to terms with losing a breast or two is no easy task. It is my great hope that at some point, possibly within my lifetime, our medical technology will advance to the point where removal of the breasts to treat cancer will come to be considered a barbaric practice that will be eradicated by using some other method that we have not yet discovered.  While we have made tremendous strides in our understanding and treatment of this disease, this is unfortunately not the case in today’s world, and I don’t have time to wait.  While the practice does feel a bit barbaric, I’m a Game of Thrones type of gal, so let talk tits, specifically their removal by blade, a be-titting.

Since this nightmare began I’ve always know this day was coming.  It was definitely a question I’ve been asked quite regularly through the process.  Are you going to whack one or two? (Sounds like a mafia hit.) Everyone seems to have an opinion on the matter.  They seem to know what they think they would do. But, I think breast removal may be slightly more in the category of abortion or performing a mercy killing, you don’t quite know what you would do unless you are actually in the position of having to make a choice-less choice, a position I unfortunately find myself in.

Having to choose is probably the worst part.  Some women don’t have a choice, their cancer and/or their genetic testing is such that “the right thing to do” is clear.  For me, the right thing is a little more ambiguous.   I wish there was a right and simple answer, one that could be deemed the clear winner and better choice.  Like so many things we tend to oversimply complicated situations and go for the extreme, “I’d just slice them off,” when the reality is so much more complex.

One thing I never thought to consider prior to my diagnosis is every woman has a different relationship with her breasts.  I spoke to a friend early on who explained to me that growing up her breasts where never really a part of her self-identity. For her, the decision wouldn’t be as complicated.  To her, her breasts are a mere side-note to who she is.  They are on the smaller side and not a feature that she routinely accentuates when she dresses or even tends to even think about.  They simply aren’t a huge factor in her self-image or sexuality.  On the other hand, I spoke with a different girlfriend who was on the extreme opposite end of the continuum.  She has much larger breast and they are very much a part of who she is as a person and what she considers when she looks in the mirror.  To her, her breasts are central to self-image, as well as her sexuality.  So when considering breast mastectomy surgery and “the right thing to do,” the psychological experience alone is deeply personal and very much unique to every woman who has to do it.  There are many factors to consider that are much more complicated than the decision to simply lob off a breast or two.  The decision is a permanent one that affects so much more than some surface area skin.

Regardless of the close personal relationship each woman has with her breasts, the decision to have surgery is also a complicated one.  Before this happened I didn’t spend much time thinking about the difference between breast enhancement surgery and breast removal surgery.   I have come to realize how very different these are.  Breast enhancement or augmentation surgery (as painful as they may be) are elective and performed for the purpose of looking and/or feeling better.  Plastic surgeons discuss how they can hide the scaring so that you will never know, and what size breast will look and feel the best.

Breast amputation surgery, a.k.a. mastectomies are more like a complicated menu written in a foreign language.  As you attempt to muddy your way through the menu you realize there is absolutely nothing that sounds like a good option.

Psychological effects aside, surgery brings its own risks.  The time spent in surgery and under general anesthesia, the risk of infection post-surgery considering the surface area that needs to be removed and the skin grafting required to replace the affected area. Then there are the joys of dealing with the healing process after having the area removed, including pain, draining tubes, and general self-care, as well as incredible permanent scaring (and a variety of scaring patterns to choose from) written across your body like surviving a slasher film, forever.

Reconstruction is essentially the dessert menu from hell, of which one has to decide if you want to partake in any at all.  This too is another painful and ridiculously difficult decision.  Should you choose to elect for some reconstructive dessert, you must realize this is not a menu of delicious rewarding chocolate porn-tits but rather much more painful options of implants under the muscle to stretch the skin, removal of nipples and permanent loss of sensation in the breasts.  It also begins a battle for attempted symmetry no matter what size and shape you are hoping for, which may or may not be your original size or shape. Should you choose to have only one side completely amputated and then attempt reconstruction, you are guaranteed surgery on the other side to achieve some semblance of symmetry which is likely to fade over time as age and gravity takes its toll.

The reconstruction dessert doesn’t end with expanders placed under the muscle to stretch the muscle tissue.  After that (in a second surgery) you have to determine if you want to use any of your own tissue to reconstruct the breast and if so, what part of your body would you like to hack into?  The preferred method is to use your stomach (and no, it’s not a two-for-one tummy tuck situation) and your back as back-up.  Both procedures of course leave their own set of scaring.   Then you must consider a third surgery (we’re now talking two years down the road) regarding the placement of aesthetic nipples, not to mention any future tattoos you might elect to add in order to color the nipples and/or hide the scars.

I’ve heard of four-course meals lasting an entire evening, breast cancer is the dinner party from hell and it seems you never get to leave.  I for one have had my fill and would like to be done now.  Sadly, chemotherapy was just the appetizer.

Cancer – The Musical

It’s not even Halloween yet and I’ve already accidentally stumbled upon my first Christmas carol, which I find rude and completely absurd.  However, in the twisted way my mind works (and because cancer is unfortunately always on my mind) it did lead me to start thinking about other absurd things.  As this happened to me on my way to the pharmacy to pick up supplies and medications for my ever-growing list of ailments I decided that it would be more fun to think about all of them as a Broadway musical.

In true Monty Python style, picture this opening number, What Fresh New Hell Will Cancer Bring Me Today.  Imagine a bunch of beautifully wrapped packages perhaps under a Christmas tree as the ingénue picks up each bright and shiny package, holds it up to her ear and shakes it in gentle anticipation.

It’s just more fun to share awful information if it’s in the form of a musical.  So, just envision these numbers with bright colorful costumes singing and dancing across a stage.  Without further ado, I’d like to present Cancer-The Musical.  Including some soon to be favorites such as…

  • Grey hair doesn’t fall out – wtf?
  • I look like a sexy ostrich
  • It feels like the atomic bomb went off in my mouth – A new fad diet
  • Mouth sores aren’t for wusses
  • Butt hurt and other tales of explosive diarrhea
  • Neutropenia and flu season, your sniffle could kill me

Somewhere in this musical I also picture a cancer fairy.  Similar to a sugar plum or tooth fairy except she (or in my mind he) delivers hot flashes, night sweats, and premature menopause while the lead is sleeping.

The second act in this delightful musical includes these exciting numbers…

  • I can’t remember anything, thank you chemo brain
  • Nosebleeds, it’s the only thing I’ve eaten all day
  • Cancer made me a hugger
  • I laughed so hard I cried and cried so hard I laughed
  • Medical marijuana, yes it works
  • I might give cancer my boobs but I’d rather give it the finger

I guess my point is this, as terrible as this situation is I’m still finding ways to laugh about it.  The list of awful things that are happening on a daily basis has grown so long I can’t even remember what hurts. They say that cancer is the fight of your life, not because of all of the awful things you have to endure but because you have endure them and knowingly submit yourself for more.

The dark truth of how you get through it is by remembering that it could always be worse.  At least you have the option to fight it.  There is a twisted comfort in knowing that somewhere out there is someone battling a harder, longer, or more unfair battle than you are.  Someone is doing this, and they too are surviving.  So if they can survive it, you can too.

The term survivor recently took on new meaning for me.  I’ve always heard “Cancer Survivor” and taken it to mean, “Cancer didn’t kill me.”  Which is true, but beyond that I didn’t dig much deeper.  Before cancer, I never really understood how people could survive horrible things. How do people go through what some people go through and come out the other side?  How do you survive losing your hair, or cutting off your breasts or other impossible situations?  I get it now.  Being a survivor doesn’t just mean defeating cancer, being a survivor means enduring all that you must go though.  Knowing how awful and unfair the next step is and mustering up enough courage to soldier on and put yourself through it.  It’s realizing whatever you just did to your body, if you aren’t dead yet, you can handle more.  Being a survivor means enduring choice-less choices and living to tell about it.

Cancer and the Emergency Broadcast System

On a day-to-day basis, what’s it like to have cancer? Well, it’s like this…

Imagine you’ve just sat down to enjoy your favorite television program.  You’ve arranged your snacks and beverages, selected a comfy outfit, grabbed a cushion and settled in.  Maybe you’re alone but if you’re lucky you have a few friends around you.  Then, just as the show you’ve been waiting to see begins, you hear a horrible screeching sound followed by the words, “this is a test of the emergency broadcast system.”  Except, it’s not a test.  This is the real deal.  A new show is airing on your television.  You can’t turn it off and you can’t walk out of the room because the consequence are literally life or death.  You must stay.  You must watch.  You do not have a choice.

For a moment you forget about the show you were planning to watch.  You might even forget your surroundings and what it was you were doing there in the first place.  All you can think about is that horrible screeching noise ringing in your ears and the paralyzing fear of the great unknown.  Then questions flood you.  What is this new nonsense broadcast you are now being forced to watch? How long will you be forced to watch this?  How bad will it be?  Do you have any options?

Gradually, you return to your senses.  It begins to dawn on you that there was a program that you were about to watch and you start to wonder if you will get to glimpse pieces of it.  You realize you don’t care about this new broadcast.  You don’t want to watch this.  This isn’t what you signed up for.   This isn’t why you have cable.  This is bullshit.

But, no matter how you might reason or attempt to plot your way back to your show, the program doesn’t return. Slowly you realize this is going take a while.  You might become so involved in this new program that for a time you forget what it was you were going to watch all together.  If you have friends in the room, you might take stock of their faces and hope that none of them are planning to bolt because deep down you know this wasn’t their plan either, and you feel a little guilty for spoiling everyone’s plans.  However, if you’re lucky they stay, offer to turn down the volume, and suggest a card game while you wait.

The tricky thing about the emergency broadcast system is that you never know when it’s going to go off. There is no discernable pattern.  Just because this one went on for two minutes doesn’t mean that the next one will.  Just because the system was tested on Tuesday doesn’t mean they won’t test it again Saturday night, and while you know a test could happen at any time, each time the tests come without warning.

Cancer is the emergency broadcast system constantly interrupting your television viewing plans.  You never know if watching your favorite show is going to work out or if you’re going to be thwarted.  Having cancer means constantly dealing with unpredictability when you would really rather just be living your life.  Having cancer is desperately wishing you could just go back to your regularly scheduled program and crossing your fingers that the emergency broadcast ends soon.

Cancer, Chemo, and Queens – Oh My!

I don’t know how to be this version of me.  I am not sick.  Well, I have cancer but I don’t feel it.  The medications I take to fight the cancer make me look sick and act sick, but that isn’t me.  That is the side effect you see as a result of an incredible fight.  I hate feeling sick, but I love Drag Queens.  I always have but, recent life events have caused me to develop a whole new appreciation for these brave divas.

I admire Drag Queens not only for their incredible artistic and creative skills as well as their performance and humor.  But also because, they know how to transform and be comfortable with the version of themselves everyone else sees.  They do it with such style and larger than life personality, one can’t help but love them.  Queens are masters of not being themselves while being themselves for all the world to see.  They are the absolute pinnacle of positive self-image, mental fierceness, and sheer-fire determination, all wrapped up in a beautiful sarcastic ball of off-beat humor.

I could handle shaving my head.  I actually kind of liked it because I was taking ownership of my experience.  In the final stage when it was all shaved evenly, it was baby-chick soft, fuzzy, and fierce.  People wanted to see and touch it and I felt strong and empowered.  Cancer had taken total control of my life, but it wasn’t going to get my hair.  That happened on my terms.  I don’t mind having a shaved head.  I do however, mind looking like a chemo patient.

What to expect when you’re not expecting cancer, tip number #315: Shaving your head and losing your hair are two entirely different things. The first time I saw myself in the mirror, I had stumbled into my bathroom after just waking up, looked and the mirror I literally thought to myself, “You look like a fucking chemo patient,” and then I remembered, “Oh wait, I am a chemo patient.”  Having your hair fall out from chemotherapy is truly an awful experience.

Early on I bought into the fact that this was going to happen to me. It was a difficult thing to do because the number one response I tended to get when I would tell people was, “It doesn’t happen to everyone maybe you’ll get lucky,” typically followed by a story of someone they knew that it didn’t happen to.  I realize this was only intended to be comforting.  It’s a way of suggesting that maybe it won’t be that bad and saying, “I love you and I’m sorry this is happening to you.”  But suggesting false hope isn’t particularly comforting.  I knew for me, this was without a doubt, inevitable.

The beauty of science is that it’s predictable.  If you ever find yourself with cancer, just know that whether your hair falls out or not is largely dependent on the medications you take.  Cancer is more like snowflakes, although there is a bit of a predictable pattern, no two treatments are exactly alike as there are way too many variables.  Not all cancer patients take the same medication or receive the same treatment.  Not all chemotherapy is the same.  It’s actually a highly customized and individualized process.  For me, I’m taking four different medications, two are targeted therapy (intended to cut off the cancer’s food supply) and two are chemotherapy intended to attack rapidly growing cells.  One of the many side effects of these drugs, is hair loss.  Medically speaking, without question, I knew that mine was going to come out.  It was only a question of how.

The nurses and doctors did a good job of preparing me for it.  I cut it in stages, prepared my kids and talked them through the transition.  I was ready.  My good friend signed on to help and we did it with laughter and tears and hugs and humor.  It’s was fun, all things considered.  It was empowering, I owned it.  I was okay with shaving my head.  But then I started to lose my hair, this is something entirely different.  I stepped in the shower one day and looked down. My hands and arms were covered in the tiny hairs.  I leaned under the water to rinse it off, but the more I rinsed, the more it kept coming.   I was covered in tiny, itchy small hairs all over my body.  The drain was piling up with what used to be on my head.  I stepped out of the shower and saw myself in the fogged up mirror.  I wiped away a section and looked at what had once been my thick luscious, baby-chick soft head.

The person looking back at me, was not the one that had entered the shower just a few minutes earlier.  I ran my had over what was left of my hair.  It was thin, patchy, and sickly looking.  I had gone from fierce girl with a shaved head to sick girl with cancer almost instantly.  I thought, at this would be relatively fast and simple process.  I couldn’t possibly have that much hair.   I thought I would go to bed with a shaved head one night wake up, take a shower, and be bald.  Hair today, gone tomorrow.  But, cancer is an asshole.  I was wrong, of course it’s not that simple.

In all my mental and physical preparations the part I didn’t think about and wasn’t prepared for was the space between.   The part where some of the hair falls out, but not all of it and it takes days, or even weeks.  The part where you can’t just shave it off completely (due to the risk of infection) and you have to walk around looking sickly with mange.  The space between where you have to cover your head because you are scary to look at.  The part where hair everywhere on your body comes out in patches.  The part where you lose your eyebrows and eyelashes and no longer look human. The part where you watch it falling out for days all over your desk at work or on the clothing of someone you’ve just hugged.  I can be strong, I can take a perfectly shaved head.  I think I could take a bald head and walk around proudly sporting my glow.  What I’m struggling with is the space between.  I’m struggling with how to own this other sickly looking, acting, version of myself.

Sickly is someone I don’t know.  I don’t want to lose my eyelashes and eyebrows.  I’m not sure how to fake those and make them look right.  I’ve never don’t it before.  I don’t want to itch and be uncomfortable covered in little tiny hairs.  I don’t know how to wear a wig that doesn’t look like me, and be a fierce other version of me.  Not to mention the logistics, how does one even wear a wig?  I’ve always had so much hair I’ve only attempted it once or twice, never as a part of my lifestyle.  I’m pretty good with makeup, but I’ve never contoured it to hide bloating or gray and blotchy skin.  This is why chemo patients need drag queens.  They know all the tips and all the tricks of highlights and how to nip, tuck, tape, and create.   They know how to do this shit, they are masters.

I did go to a wig store, it was educational.  As it turns out, there is such a thing as a strap-on mullet.  It’s half headband, half hairband (literally).  I have learned that wigs are largely bushy on top and difficult to fit a hat over.  If you ever find yourself with cancer and want to wear a hat and still look like you have hair, you have to buy a strap-on mullet. I never knew this existed but my guess is, Drag Queens do.  They know all about this stuff and more importantly they know all about owning it.  They know about feeling beautiful from the inside out no matter how you look, and projecting a fierceness often in the face of great adversity.

There are women, battling cancers, bravely walking among us and sporting strap-on mullets.  I love them.  I admire them.  Drag Queens go further than traditional actors playing a part, Queens are the part.  They have mastered the alternative version of themselves and they are bold, sassy, funny, and beautiful. They transform into someone new, a diva.  So should chemotherapy patients. I want to be a chemo diva.  It’s not about vanity it’s more about not wanting cancer to own me.  Some of the fiercest ladies I know are putting on a show, not so much for your entertainment but because they have no other choice.  They are simply trying to own and alternative version of themselves. Finding out you have cancer really is a little like being lifted up in a tornado and getting dropped somewhere in a foreign land far away.  Drag Queens have already paved this yellow brick road. I think they should adopt chemotherapy patients and show them how it works in the Merry Old Land of Oz.

Cancer, Chemo, and Queens, Oh my!

IF YOU EVER FIND YOURSELF WITH CANCER What to expect…. When you’re not expecting cancer.

If you ever find yourself with cancer just know that as difficult as it is to tell people you have cancer, you will learn to love to watch the way people respond when you first tell them the news.  After all, how does one respond to someone who just told you they have cancer?  As I start to tell people, I play this game inside my head, it’s a little like a game of cancer bingo.  What will the response be… I can hardly stand the anticipation. Occasionally, there is an awkward moment of void and sadness that can only be filled with hugs, tears, laughter and the much attempted, chocolate. Usually there is encouragement, support and offers to help.  Sometimes people offer to pray for you (more on that in a later blog).  Frequently, you find yourself in the middle of a “my sister’s, friend’s, cousins, aunt who once had cancer” story. (I then run a separate game in my head as I wait to see if the story ends with… and she died.  You would be amazed how many people feel the need to share their cancer story that ends in death.) Finally, there are genuine questions and curiosity.  How did I find out?  Had I suspected?  What’s the treatment like? Am I going to lose my hair?  Does chemotherapy hurt?  Ultimately, it comes down to, what is it like to have cancer?

It’s a legitimate question.  If I’m being honest, I had never really thought about it before this happened and so rudely interrupted my busy life.  Cancer was always a dreaded idea floating somewhere far off in the distance like an apparition.  The cancer ghost, I knew it was probably real but I’d never seen it and I chose not to devote too much energy into examining its existence.   I have so many other things to stress about, worrying about getting cancer just never quite made the priority list. Other than some horrific things I’ve seen in movies, I really had no idea what it was like to have cancer.  Sure I’ve known someone who had cancer, everyone has, but I’ve never been in a position to really ask someone, what’s it like?

If you ever find yourself with cancer accept the fact immediately that there is no right way to do it.  I’ve always felt like secrets and silence were a cancer in-and-of themselves and I refused to let secrecy compound an already shitty situation.  After telling my family, a couple of close friends, and my work, I decided to come out of the cancer closet publicly on social media.  It was the best decision I’ve ever made.  The outpouring of love and support was incredible, the endorphins alone from having so many people respond might have killed the cancer.  On top of feeling incredibly loved, coming out of the cancer closet, made it an okay subject for everyone to discuss.  It was suddenly okay for my kids to ask questions and to go to any adult in their life and say, “My mom has cancer, I’m scared, and I’m having a bad day.”

Everyone knew, all my friends even one’s I hadn’t talked to in twenty years all of a sudden called or sent messages.  I had distant family that I had rarely or never spoken to contacting me and it was fantastic. Where have these people been all my life?  All my colleagues at work, even the ones I’d typically just smile at because I don’t really know their names, were coming out of nowhere to give me hugs.  Coming out about cancer made it okay to talk about it in a normal tones, not hushed secretive voices where you whisper while looking over your shoulder and hope the person you’re whispering about doesn’t overhear.  It made it okay for me to cry when I needed to… and I did, randomly and without notice. (Once while heating up my noodles in the lunch room because a colleague walked in and smiled.)  It made it okay to laugh and crack inappropriate jokes about bald heads, chemical diarrhea, and vomiting uncontrollably.  The point is, it made it okay to be public about all the good, the bad, and the ugly that comes with cancer.

Cancer happens randomly and can happen to anyone at any time.  While everyone’s experience with cancer is unique and highly individual, there are two commonalities that are guaranteed. One, it’s a guaranteed that no matter when in life the diagnosis comes, it will be an inconvenient time.  There is just never a good time in anyone’s life for cancer to invite itself for a visit in your body.  It’s an unwelcome, self-centered, and disgusting house guest that leaves its dishes in the sink and wet towel on the floor.  Which brings me to the second guarantee, having cancer absolutely sucks.  It just sucks, no getting around that.  But, you do get to choose what to make of the experience.

I decided to use this experience to connect with the world in a way I never have before.  I wanted to share what I was going through with everyone I knew because in my mind, the more support, and general good juju I can surround myself with, the better.  As taxing as fighting cancer is physically, it’s also a huge mental game and I really don’t want to play it alone.  Sometimes it’s the simplest things a hug, a card, or text message that reminds me that I am not alone in what can be a very isolating experience.

I have a warped and wonderful sense of humor, and I choose to handle the harsh daily realities of cancer with sarcasm and inappropriate (but funny) jokes.  I told a friend early on that I’d rather laugh about it than cry.  I am very aware and have recently been gratefully reminded of how many people are available to help or provide a hug, a shoulder to cry on, or blissful distraction when I need them.  Cancer doesn’t give you many choices.  It moves in when it feels like it and you lose total control of your life, your body, your hair, everything.  I accepted early on that there is very little I can control, I’m getting on this roller coaster whether I want to or not, and it’s departing NOW.  What I can control is what I make of the experience.  I chose to talk about the humorous and delightfully strange things people don’t hear about or see in this movies, because I can.

So, if you’re curious what it’s like to find yourself with cancer, keep reading.  Rather than simply documenting my detour on the cancer coaster, I’d like to share a slightly more universal perspective about what to expect when you’re not expecting cancer.