My Friend Is Dying

My friend is dying. 

My friend is dying a Horrifying. Painful. Lonely. Frightening death from a silent, relentless, misunderstood disease. I get this more than most because I am one of the silent ones.

Here is what I know.

Growing up, though painful, is relatively easy. We are seekers of simple things. Wonder. Value. Purpose.… Love. Simple searchers blinded by the light of simplicity. A simplicity that will become more complex than we could ever imagine. And in that complexity, we will find difficulty which will lead us inevitably to impossibility and finality.

Introduction. Seduction. Induction. Extinction.

Life is merely a never ending playlist of the exact same songs played for completely different soloists. Sounding the same. Familiar in their tunes. But there is just something about the voices. The Dynamics. The Vibrato. The Timber. They are undeniably unique and are the Impressarios’ notes played On or Off key depending on the circumstances of the Libretto.

Overture. Soubrette. Crescendo. Verismo. Finale

My friend is dying.

My friend is dying, a card-carrying member of a lifetime club that absolutely no one wants to join. Russian Roulette with a fully loaded gun. Bang. No-one gets out alive. Sure some of us will survive, we just aren’t alive. Anymore.

Here is what I feel.

These deaths aren’t “just went to the store for deodorant and toilet paper and remembered I needed a sympathy card” kind of deaths. They are a perpetual slo-motion video of your most annoying friend and her wretched kid stacking sticky blocks, on a dirty linoleum floor in a day old spaghetti sauced t-shirt.

Girl. Woman. Wife. Mom. 

These deaths, these are the want to smash the remote control because “I cant find my GOD DAMNED glasses to see the GOD DAMNED buttons” kind of deaths. They are the shave my head, abandon my tribe for an Ashram, and spend years writing crappy novels on finding my bliss in the dark, kind of Deaths.

Glory. Darkness. Blackness. Tempest. Storm.

My Friend is Dying.

My friend is dying and will be forever memorialized with a like in a feed or retweet that never gets retweeted. She. Is. Dying.  There isn’t a vine or an insta-story sad-face broken- heart emoji kind of way of fixing this. She deserves more than that millisecond of attention time. She’s worth that kinda heartbreak because…She’s Dying.

Here is what I am.

The thing about growing up and wising up? It’s a bitch. What you realize, if you really care, is that we are all losing Every.Thing. Every. Single. Day. 

Please…let me stop you before you say look on the bright side. Because if you actually get to get to those words, to actually form them and get them all the way out of you mouth before I am wailing on you with every ounce of rage I've earned...I promise you. You will have wished that I had stopped you.

Protagonist. Antagonist. Villan. Fool.

My friend is dying in an “I have lost my dignity, don’t want you to see me this way, don’t want to burden to anyone but why is this happening to me and what will happen to us” kind of way.

Its not news. 

It was coming.

It always does. 

We are paralyzed in grief. And in grief, lies a whole life of dying. One painful moment at a time. We fight constantly to keep from losing the people we love and with one toss of a tiny pebble in our stream, it becomes a ripple effect of loss that goes on and on for the rest of our lives.

Winter. Spring. Bloom. Frost.

My Friend is Dying.

A Funeral for my Friend

It is 4:00 am and I am wide awake. Water. Filter. Coffee. Brew. I find myself grateful for sleep that will not come. For the quiet. Memories of you are flooding my consciousness. The selfish ones that belong only to me. There is a desperate need to reflect on my own recollection before the funeral colored, plastic peddled version of you is all that I can see. Before the Kleenex toting masses converge on the church uttering niceties like “how lovely you looked” or “what a beautiful service that was”. I know they will steamroll through my brain. I want to scream.

I stare at the photo board in my mind. Photos of a you I didn’t know churn through my brain.

Young, happy, hopeful; beautiful.

Somehow as I look at these pictures, they don’t reconcile with the ones that I have filed in my memory.

Older, exhausted, scared; every bit as beautiful.

There wasn’t one picture of you the way I remembered you. Not one visual representation of your struggle, your fight. It didn’t exist. Was it real?

I try to remind myself that hopeful pictures are for the living. My thoughts these days are for the dying and the dead.

That wasn’t you in that coffin. It was a stranger not the girl I shared cancer with. You would’ve hated the lipstick. I did. I’m not sure what I expected to see there. Maybe one last glimpse of your soul? One last set of wheelies through the hospital halls or one last night curled in bed watching Roseanne. What I saw nothing but a bizarre caricature version with a sickly pink nail polish that I will never forget.

You would’ve loved all of the people. The ones gathering for you. Tears were streaking down the faces of the many. Stories were being passed around and savored like a joint. I couldn’t listen. The screaming in my head was just too loud. I sat down before my legs betrayed me. Condolences floating by as I sat. “She’s no longer in pain” “She’s with Jesus now” “She’s happy.”

Grown ups say stupid shit.

Your teenage daughter flops down next to me and asks me if I’m alright. No. We whisper huddled in our guestless sanctuary like we are in some sort of twisted secret club. Her teacher is an asshole, her boyfriend is needy. She looks beautiful in her dress. You would be so proud. She makes me laugh. Hard to do these days.

I drive home in a fog. I want to just keep on driving but I don’t have anywhere to go. I go home. I sit in the driveway with my dread. How will I face them? Will they see what I know, that part of me died with you? Will they notice? I hope they don’t.

My phone chirps. It’s you. Your daughter has your old cell phone and she’s texting me. Our last conversation pops up. Your last written words to me and I smile. It is you. I contemplate changing out your name for hers and then I don’t.

I want today to be over. For people to stop asking if I’m alright. I’m not. I want the noise of the living to go away so that I can focus on the feral scream that lies beneath the surface, bubbling, threatening to unleash.

It is 6:00am. My syrupy-sugar coffee is cold. The world is still asleep. Relief floods me. I’m not quite ready to let in the light. Darkness seems much more dependable. Comforting even.

In less than 6 hours you will be in the ground. I’m worried because you get cold. The thin dress you were in will not be enough to keep you warm. Where are your blankets? I need to scream at someone to give you a blanket. Don’t they know??? I think they should know but they don’t. This is my detail not theirs.

I think forward to the reception that is going to happen in your house after the service. Of Charlie barking at anyone that crosses the threshold. That crazy fucking dog who finally agreed to let me in your house without biting my face off. Will he bark at everyone today? I would.

I imagine the urge to slink off to your room and curl up beside you will be overwhelming. I will try not to. I’ll remind myself to smile as people talk and laugh over some potluck mystery food. I won’t.

I’ll stay as long as I can watching people come and go and then I too will pack up to leave. Not wanting to say good bye. Wanting to stay frozen in life where you left me.  Lost, scared, alone. Grieving.

I will look back at your house as I’m driving away. At your car in the driveway and pretend for a moment that I will see you soon. That I will be able to tell you about my latest scare and you will tell me it’s going to be all right. I won’t believe you. I’ll rub the scar on your head and promise you it isn’t that bad, that you really can’t see it. You won’t believe me. I’ll cry.

“I love you, Leigh” that I’ll believe. We said it enough. We said it in holding hands while the nurse tried to find a good vein. We said it in late night texts and in end of conversation words.  In eye rolls and naughty hospital behavior.

Today I will say goodbye. Not to you. To that body in a box version of you. I will stand there with the others and try to behave. Try not to let out the scream that has become the background noise of my life. But if a tiny wail escapes me I know you will forgive me. You will understand.

Your husband once gave me an out on your dying. He understood that your dying would cause me pain, would raise my own fears. It was ok if I didn’t come around. I didn’t take that out and I’m glad.

I shared more with you in dying than I have shared with most in life and I wouldn’t have missed it for world. I love you my beautiful, strong, amazing friend. I truly love you. See you soon.

Where Am I…and What Have You Done with Me?

Cancer is not unlike war.

For the few and the proud, imminent threat comes suddenly and immediately. Scared shitless, we are enlisted for battle with promises of victory and defeat. We blindly subscribe to the battle cry. We are thrust into a sort of perpetual boot camp that includes endless internet searches and doctors prognoses/ diagnoses in a land far from our home, surrounded by strangers that speak a foreign language. We are taken from our loved ones and thrust into a world that will leave us scarred and broken. We are the Walking Wounded and we will leave the battlefield knowing, that someday, some way we will be called up to fight again.

 In the meantime, we arrive home frightened, damaged shells of our former selves and pretend that we are heroes. We attend parades and walk proud amongst our supporters all whilst remaining silent prisoners of war. We make believe that we are indeed fine. Pretend that things have not changed because we know that for those who have waited terrified for us at home, things have to remain the same. We reluctantly get up every morning and move through the memory of our lives as ghosts. Daily activities seem to pass through us like the morning mist….cold, damp and threatening to completely swallow us up.

We pray for relief.

The mirror now reflects faces and bodies we do not recognize. Strangers in the place of ourselves. We practice our smile knowing that that smile is the key to the survival of the hopes and dreams for others. Our deceitful promise of the future we know will probably never come.

We have gone to war, returned and we will never be the same. Mere visitors in a life we used to call our own.  

We pray that the quiet stops being quite so loud and we wonder if it will haunt us forever. We go to bed at night dreading the darkness, fearing that which we cannot see. Knowing that it’s there. Waiting. Hoping that if we close our eyes real tight, it will cease to exist.  

Knowing that it won’t.

Knowing that the irony lies in the fact that we fought so hard to preserve a way of life that is no longer a possibility.

Knowing that our loved ones have unsuspectingly lost us to our enemy in a way that they will never quite comprehend. Because though they remained here, holding on to the idea of home, we now live in another place. A place far away. An unforgiving land where they speak a foreign language. And though we have returned home, we will never truly live here again.

I'll Take Cancer With a Side of Crushing Guilt...To Go

I am lucky. I was diagnosed with early stage Breast Cancer, had four surgeries in eight months, lost my breasts, my ovaries, my uterus, my fallopian tubes, my cervix... but I am lucky.

I ran into a girlfriend last night who asked why I hadn't blogged in awhile and I had one answer for her, guilt. Crushing guilt. You see I have been blessed with many friends along the way. Some of them old true blues but most of them new friends that I have collected. Friends that have shared the same doubts, fears, frustration and disdain for our unwanted guest, cancer.

In the beginning of these friendships, I felt an immediate kinship with these women. I knew that whatever questions or concerns I had, they would pipe right in and give me good, experienced advice. I honestly couldn't have done it without them and I turned to them often. What I didn't understand is that even in cancer, there is a hierarchy. Wanted or not.

Along the way, I have been introduced to many women with cancer. Have talked them through their surgeries and their impending chemos, helping them to be strong while I slink off and weep in the corner on their behalf and mine.

You see I am lucky. I had early stage Breast Cancer, had four surgeries in eight months, lost my breasts, my ovaries, my uterus, my fallopian tubes, my cervix but I did not have endless rounds of chemo, did not have neulasta injections that made my bones hurt, did not have radiation treatments that burned my skin, did not have to continue taking Tamoxifen or any other Aromotose Inhibitor for countless years not knowing what that was doing to my body.

What I realized in my blogging journey was I felt I had no right. These women were suffering and I was done. I felt like a fraud, like a joke and like a wimp. I was not strong. I merely got off easy. So I stopped writing. I couldn't even look at my blog or think about it. Who was I to be complaining about my situation when there were others I saw daily that were so much more worse off?

I explained all of this to my girlfriend who inquired about my blog last night and do you know what she said. She said I never really saw your blog as a cancer survivors blog but as a personal journey. That got me thinking. She was right. Cancer isn't about comparing. It isn't a game of my symptom is worse than yours. It's real and it's scary no matter what stage you are in.

So here I am and here it is, my personal journey. Cancer just happens to be riding shotgun.

MY STORY

Being a child of divorce, I was taught, at a very early age, the benefits of the flair for drama. Life was simply not of any interest at all unless it was filled with dramatic slams of the phone in it's cradle after an unpleasant conversation; screaming, stomping, slamming of doors at the end of an argument; or simply bawling like your first born had just been ripped from your arms over spilt milk, literally.

I can remember the first time I realized that the flair for the dramatic came with it's share of followers and fans. Up until my parents divorce, I had been a shy, overlooked child. I was not overly pretty, smart or memorable for that matter and I was used to fading into the background with ease. At this particular moment, the moment of realization, I was in third grade chorus and having a crappy emotional day. We were rehearsing for our Christmas Program, the first one that my parents would attend separately, and I began to cry. When asked by my classmates and teachers what the problem was, I began to spin a tale that would have the children gasping sympathetically and the adults blotting at unshed tears.

I couldn't possibly sing "White Christmas" I explained, because several Christmases ago, on a particularly snowing evening, I sat holding my grandmother's frail hand in a frigid hospital room, wrapped in an over sized sweater. As the snowfall became heavier and heavier, I would talk to her of memories of catching snowflakes on our tongues and snow angels on the hill and of hot cocoas by the fire. The night was cold and long and as she began taking her last breaths, I began singing that song as she slipped from this earth and made her journey beyond.

Of course I left out the part where journey was Forty-five minutes away to her home where she continued to live until I was in my twenties. But somewhere in that sad, dramatic story of a moment, I was a media darling and I liked it. The rest of my youth went on like that, lots of drama, little peace but as television was showing me, I was living life as I was supposed to. I wasn't dramatic, I was passionate.

It wasn't until meeting and marrying my tremendously stable husband that I realized I was so tired of the drama. I had become a weary traveller on the road to love and had no idea what a wonderful, supportive, drama-free relationship looked or felt like.

My husband and I are fifteen years in and have thankfully not had too many bumps along the way. We have endured sleepless nights with newborns, hospitalizations with small children and the everyday ups and downs that life brings with it. Together.

Enter my Breast Cancer.

One year before my diagnosis, my comfortably stable life seemed to begin unravelling. Having always suffered a couple of days of depression in my menstrual cycle, I began to suffer for weeks at a time. I would sometimes take to my bed for days on end, letting my household chores slip away and leaving my 8 year old to care for my 6 year old son. Something.... I knew, was very wrong.

I began to see doctors. Maybe this was what was known as Marathon Letdown. I had run four marathons the year before and maybe my body got used to the excess in cortisol release and was now depressed without it. I was checked for perimenopause and determined that I was not in it. Hormones great. Then, I was diagnosed with PMDD (pre-menstrual dysphoric disorder) or extremely bad PMS. They put me on Lexapro for the depression and sent me on my way.

After about 6 months on the Lexapro, I was a complete zombie with horrible side effects. I gained weight in my tummy (something which never happens to me) I could not get sexually aroused and I could not remember anything....anything. I once ran in to a friend who I had known for 10 years and I could not remember her name. Something wasn't right here. I called the doctor immediately and began stepping down off of the antidepressant.

Six more months went by and I still had the same "blackness" living inside of me. The depressions were lasting longer and longer and my kids were starting to feel the effects. When my husband came home from work one night and asked where I was and my daughter's response was "where she's been all year....in bed." I knew something had to be done. This was not simply my flair for the dramatic rearing it's ugly head again some fifteen years later. Something. Was. Wrong.

The day that my mammogram results came back that I had calcifications in my right breast that they wanted to look at more closely, I began to feel some relief. Then after the stereotactic biopsy when they told me I had Atypical Ductal Hyperplasia (ADH) I felt more relief. When the surgical Biopsy came back Ductal Carcinoma In-Situ (DCIS), again relief. When the bilateral mastectomy came back back clear margins. Final. Relief.

You see something was wrong. Cancer was in my body and my body knew it, just none of us did. It was fortunately not my youthful flair for the dramatic, that was rearing it's ugly head but an actual enemy that I needed to fight.

I have no "blackness" left in my mind, I still take to my bed once in awhile and allow myself to feel what is happening to me but I am no longer a prisoner to the unknown. When asked by others, I always tell them, if you feel like something is wrong, then it probably is. Don't stop until you find out and take care of it. Don't let doctors label you and medicate you without further testing.

Cancer by it's nature is drama. Luckily it came up against the grown-up me instead of the adolescent me but I still, in the end, wound up screaming, stomping and slamming the door in it's face just for old time's sake.

Bye Bye Tissue Expanders

4 Months Post Bilateral Mastectomy
Tissue Expanders
Photo by Eric Von Bargen

As of 12:00 PST Wednesday, October 3, I will no longer have my tissue expanders in.

I only have one thing to say about that:

 

BYE BYE TISSUE EXPANDERS....I WILL NOT MISS YOU MUCH.

There's a Monster Hiding Under My Bed

Photo by Eric Von Bargen

Fear. At some point and time all of us can recall when we first became aware of fear. The time when we learned that the world was so much bigger than what was inside our of our warm, safe homes and much scarier to boot. Maybe we started asking our moms to leave the light on in the bathroom at night as we slept or perhaps we found ourselves sprinting and taking a flying leap onto our beds so that the monsters underneath wouldn't grab us and drag us under. Either way, most of us remember the first time we really felt afraid.

For me, it was when I was ten years old. I was a child of divorce and as such was thrust into very grown up roles from an early age. I suddenly found myself often alone at home in charge of my six year old brother while my single mother worked long hours to make ends meet. At night, when the clock struck six and my mother wasn't home as scheduled, my thoughts turned to worst case scenarios and I felt real fear. Instead of letting my baby brother know just how frightened I was that our mother wouldn't return, I invented a game. I called it "Counting Cars" and it was as simple as sitting on the porch in the dark with my brother and watching the cars go by.

"I'll bet you that one of the next three cars that drives by will be mom", I'd say, then we'd huddle and count the headlights together "One....Two.....Three" Then it'd be his turn and so on and so forth. Sometimes we would play this game for hours and she always did come home but I will never forget that fear and the need that I felt to protect my brother from it. The way I needed to make him laugh, make him believe he had the power to bring her home. That just by saying it out loud, would make it so.

It seems I'm not so different with my Cancer.

You see I am one of the lucky ones. My cancer is completely gone. The mastectomy took it all and according to my doctors the chances of it ever coming back in my breasts are next to nothing. But what I am left with is a terror that I cannot explain. The fear that if it's in my breast, why wouldn't be somewhere else as well? It is a fear that takes a small, very normal ovarian cyst for anyone else and turns it into full blown ovarian cancer in my mind. It sends my world into a tailspin of trans vaginal ultrasounds and CA125 tests that I am currently awaiting the results for and waiting is where the real fear lives. Not knowing is the terror in the night. The monster under the bed.

I can remember fear as a child. It hasn't changed much as an adult. I am still waiting, Counting Cars and hoping that the next phone call wont be my doctor telling me that I now have cancer somewhere else. Oh and as for protecting those around me from my fears? I'm still doing that as well. I'm writing this blog, I'm being there for other cancer patients and I'm trying to seem as much like the old me as I can.

But in my mind, when the night is dark and quiet, I find myself counting "One....Two...." and I hope that in a few days, I'll have the answers I need and that proverbial car will drive up and I will once again fell safe. That is of course until the next time.....

What to Expect from My Mastectomy

4 Months Post Bilateral Mastectomy
Photo by Eric Von Bargen

 

I can't tell you how many times I googled: What to Expect from your Mastectomy or List of things needed for your mastectomy and got...Nada! The following is a list that I compiled for a friend who is about to go through a bilateral mastectomy so I thought I would share it with all of you.

Keep in mind that every surgeon, every body and every cancer is different so your experience may not mirror mine but certainly some things will. Below is the list of how things went for my Skin Sparing Total Bilateral Mastectomy with Immediate Reconstruction preformed on April 4, 2012.

THE PRE-OP APPT WITH SURGEON

This is the appointment where your surgeon should finalize all details of the procedure with you and give you instructions for surgery. Find out if your surgeon will be sewing Alloderm to your chest wall ( human tissue sling type apparatus that will hold your tissue expanders) If so, there will be some pulling and pain from where these are attached.

 

You will also possibly leave with some prescriptions to fill so that you will have them when you get home they might include:

1.      Pain Killers – They gave me Oxycodone but it made me hallucinate and feel terrible. About two days in, I had them switch me to Vicodin and when I couldn’t take the way that made me feel anymore, they switched me to Tramadoll which I had no trouble on and could easily drive with.

2.      Anti-Nausea Pills – Sometimes the anesthesia cocktail they give you along with all of the pills that will be in your system will cause extreme nausea. They will not want you to throw up because it will pull on the chest muscles. What they gave me was Zofran. But make sure to get the tablets that dissolve under your tongue. If you are as nauseated as I was, you will not be able to stomach another pill to swallow.

3.      Antibiotic – This will mess with your stomach royally so make sure you take with food

4.      Stool Softener – the beauty of all of these pain meds is they are constipating. (warning TMI) I did not poop for 1 month after my surgery and was MISERABLE!

5.      Xanex – If you are having trouble sleeping or with stress, they will prescribe you an anti-anxiety such as Xanex or Lorazepam but you have to ask. I highly recommend having it as my panic attacks increased as I got closer to the surgery date and sleeping was out of the question.

THE SURGERY

1.      They will want you to shower the morning of the surgery with an antibacterial soap taking care to wash well around your breasts and your chest. They will not want you to put on any lotions or deodorant. I advise you to shave your underarms here, this will be a luxury you may not have for a while due to the drain location and the limited mobility in your arms.

 

You will be going into surgery without underwear on (something I would have never dreamed or else I might have groomed better!) If you care about this. Take care of that in your shower too.

2.      When you check into the hospital, they will get you undressed and in bed and possibly start your IV. My nurse gave me a shot of Lidocaine before inserting the IV and it was the best one I’ve ever had. The anesthesiologist will come in and make sure that you are well enough to go under and clear you to start any meds they want you to have. In my case, I was so nervous, that gave my an anti-anxiety through my IV called Versed. I was relaxed and calm.

3.      The surgeon will come in and check the surgery orders with you again and then mark up your chest for his/her guidelines during the surgery. Then you will be ready to go.

4.      Once you get into the operating room, they may be performing a chest nerve block on you. I highly recommend this. They have to do it before they put you under because you have to sit up while they do it. It is a series of about 6 injections in your spine not unlike an epidural. With the Versed on board, I barely remember it. But it kept me comfortable for about 24+ hours after the surgery.

5.      They put me out with a mixture of Propofol (Yes, the Michael Jackson Drug) and it worked well.

6.      Off to la la land you go. Once you are out you will be intubated, which will cause you to possibly wake up with a sore throat. You will also probably be catheterized so don’t be surprised if you have that I cant pee and it feels a little strange feeling when you wake up.

 

My surgery from mastectomy to rebuild was just under six hours.

GOOD MORNING SUNSHINE IN RECOVERY

1.      You will slowly come to in the recovery room which will be quite a blurr. Unless like in my case the woman next to you is screaming hysterically. There will be others all around you and it is a little scary and disorienting but once they have monitored you for a bit they will send you back to your room where your family members can join you.

2.      More than likely, you will have a pain pump that will be attached at the base of your new biggerJ breasts to deliver pain meds directly to the chest. It is a simple contraption that you will be able to remove yourself once you get home.

3.      The dreaded drains, I had two, will be stitched into the side of your chest and will at worst be annoying. For the first several hours, output will be monitored by the nurses. This is a good time for your family to watch and learn because depending on your output, you will have these drains anywhere from 7 days to 3 weeks. They are a pain but once you get how to pin them to your gown you should be fine. The hospital will probably send you home with a chart so that you can continue to monitor the output and report to your surgeon. My surgeon took out the drains when the output was less than 30ccs on each side per day. Your surgeon may have a different goal in mind so ask.

4.      If you can, bring a colored pillowcase pillow (so they don't get confused with the hospital pillows) from home that makes you comfortable. A little comfort can go a long way. You will need to be propped up on your back to sleep.

5.      You will need help to get out of bed to go to the bathroom because you will not be steady enough to do it on your own. Visitors may come but you will be kind of out of it so it may not be as welcome as you might think.

WHAT YOU WILL NEED WHEN YOU ARE RELEASED

1)      A pillow for the ride home to put under your seat belt. Your driver will need to drive slow, every bump in the road will add to your discomfort. I could not drive myself for about 1 to 2 weeks. Not only was it painful but I had too many narcotics in my system to be a safe driver.

2)      Nausea Bands – Any drugstore, the kind you wear during a cruise or while pregnant. I swear by them.

3)      All of your meds, ready to go and take them on time. Do not worry about addiction and back off. Trust me, stay ahead of the pain. If you do have a chest block the pain is deceiving and will not hit you hard until day 2. Trust me, I was facebooking on day 1 like a champ and the next day was like WTF?

4)      Surgical Gloves – You will not want anyone to touch your drains or your bandages without surgical gloves. This will save you from an infection down the road.

5)      Extra Gauze Pads – Large size, these will need to be taped to your drain sutures to stop leaking.

6)      Surgical Paper Tape – To attach the gauze to the drain output.

7)      Shower Chair – I had to be showered by someone for 1 week. I could not lift my hands to wash my body, much less my hair. A shower chair is an expense but goes a long way when you are managing drains and woozy from drugs in your system.

8)      Tons of pillows. You will need to sleep on your back with tons of pillows for about a month.   The problem is actually the drains. Any movement you make will tug on the drains which is very uncomfortable.

9)      Food for an upset tummy. Bland Cheerios, dry toast, saltine crackers. You may even need to keep a little Gatorade on hand in case you get dehydrated. I chewed on a lot of ice chips due to my nausea.

10)   DO NOT buy the $80 drain top the hospital recommends. I found it incredibly uncomfortable and useless of course if you have to go right back to work, that might be different. My husband's over sized button down shirts worked just fine. Whatever clothing you get, you will want a soft, no constricting fabric. I found this great short cotton robe from target and that is what I wore most of the time.

11)   Someone to provide meals for your family for the first week. You will not be able to sit up on your own for days. Your caregiver will need to figure out a way to gently push you up from your back. Once I was a few days in, it was easier to roll on my side and have my mom pull me up. Your caregiver will need to wake every 4 hours to make sure you take your meds religiously. Neither one of you will be sleeping so someone needs to plan meals and bring them to you. A great resource for organizing meals for your family is www.mealtrain.com. I had meals delivered to my door for over a month and I can't tell you how helpful that was.

 

Okay that is all I can think of for now. I hope this helps. The first time you look in the mirror will be tough. Your scars should be covered with dermabond, a skin glue, which will make them look even stranger but hang in there. It gets better. I promise.

Now that I Have Breast Cancer Do I Have to Run All Of THOSE Runs?

5 Weeks Post Bilateral Mastectomy

As a competitive runner, the first thing that entered my mind when I was told that I had Breast Cancer was 'Crap. Now I have to run all of those freaking cause runs!' Now don't get me wrong, cause runs aren't bad, they do so much good. Whether their purpose be to cure some disease, feed some of the hungry or save some puppies; they are all worth while, just not for runners.

There is nothing worse than trying to weave your way through a bunch of well meaning cause runners who decide to walk five people wide on a bike path as you are trying to get through. I have on several occasions been known to curse, push and or flat out run over these people with a sense of entitlement and a sick satisfaction that carries me to the finish line at least a hour before them. Of course that was then. Would I be the same now that I was wearing the pink survivor cap? Would I feel the need to walk arm and arm with my sisters for the cause?

The answer, I ashamed to say is no. I am who I am to the core. Breast Cancer or not.

 That is how I found myself five weeks after my bilateral mastectomy at the Los Angeles Revlon 5K for Breast Cancer. My friends convinced me that I needed to go and I convinced myself that not only did I need to go, I needed to run...the whole damn thing! So strapped with my cancer sign to my back and my survivor cap on my head, I said goodbye to my family at the start line and took off. If people were wishing me well along the way, I couldn't tell you. I was in a zone, a very determined, aggressive, fight of my life kind of zone. One that had me weaving in and out of the walkers, cursing them and maybe throwing the slightest push or two as well. Why were these people in my way? Didn't they know that I needed to run? As I neared the finish line and so many were walking arm and arm, I was in a full out sprint like it was the race of a lifetime. I needed to finish strong with some sense of who I was still intact. To prove that my body may have changed but that I haven't.

After the race I doubled back and found my family about two miles back, I finished the race again. This time with them. Arm in arm, and I finally understood all of those walkers I had cursed so many times before. It was in that moment, crossing the finish line with my husband, my daughter and my son that I finally understood the cause run and realized that it had nothing at all to do with actual running.

Tune In Tokyo...Or In My Case, Toledo?

 

 

Let's admit it, nipples are weird. In fact I just read that when erect, they stand as tall as a stack of five quarters. Why I remember that stat, who knows? but it is indelibly burned into my brain. I somehow don't think I'll ever be able to put money into a parking meter again without that very vivid picture in my mind's eye.

 

Until losing them, I had never really given them that much thought. In my nipple story, there were those few moments in time when attention was brought, acknowledged and carefully stored away. Like the first little nibble from a timid boyfriend or the painful mastitis I got from nursing my daughter in those first few months. I remember talk of titty twisters and getting to second base but other than that, nothing.

 

So when I was told that my cancer was behind my right nipple, it was a conversation I will never forget.

 

First, let me tell you that accounts as I record them may not be true. The amount of shock I was in at that moment cannot be described. But the conversation went a little something like this: Did I hear her right? They are going to remove my right nipple? I can keep my left nipple if I choose? But why would I do that? Why would I leave any tissue that may someday allow the cancer to return? Say that again? They can rebuild my nipples? With skin from my bikini area? I might get pubic hairs growing there?

 

Whoa....Stop!!!

 

Now I'm not gonna lie. I have had a few stray hairs on my nipples. They have all been met with the same amount of retched disgust and have been immediately obliterated by any means possible. But to actually choose to have pubic hair growing on my breasts? No thank you!

 

I generally try to handle one major event at a time so right now, I am focused on the replacement surgery that is a few weeks away. Will I choose to rebuild my nipples? I really don't know. I guess we'll have to wait and see but no matter how my nipple story ends, know this...If I had it to do over again, I would've paid more attention. I would have had them caressed more often or breast fed my babies just a little bit longer, maybe even worn more shirts without a bra so that they teasingly peeked through. Nipples may be weird but they are so much a part of our femininity, our story, that they deserve just a little more.





Tissue Expanders - Not For Use As A Flotation Device



 2 years before my mastectomy
Photo by Eric Von Bargen

I was a small breasted woman. AA cup to be exact. I have endured flat chested jokes for as long as I can remember. I have invested in padded bras, chicken cutlets and various other lifters, shapers and such just to achieve the illusion of well-endowed (or at least somewhat endowed). To no avail. So would it surprise you, that in college I  bought a bikini top that inflated just like a child's raft? All I had to do was pop open the tab, blow on the tubing and voila...voluptuous vixen or probably more like tumultuous toddler. You be the judge.

I used to laugh with my girlfriends that the suit came with a warning label attached: "Not for use as a flotation device." Really? I thought. That needs a label? An advisement? I imagined some poor warning- tagless woman adrift having drowned with her boobs floating on the water. Humor and ingenuity in it's best masculine form.

Drown the woman, save the breasts!

 

After my bilateral mastectomy, I have been blessed with what I call my circus freak show boobs. These are tissue expanders that are implanted under my chest muscle and filled with a needle and saline weekly for a period of time to expand my skin and make room for the final implants that will take up permanent residence.

They are uncomfortable to say the least but not unbearable. Imagine, rounded Tupperware, if you would under your skin that gets larger right before your very eyes. Freaky and a little painful but oh the curves! I must say this is the best part of the whole ordeal. I finally have boobs, plastic as they may be but I have boobs. I don't have to inflate them or stuff them into my bra and hope they don't pop out at dinner while I'm gesticulating some super important point . My clothes fit better. My confidence is higher and my daydreams of lying hilariously adrift on the ocean are all but gone.

Please don't misunderstand. Life in this body is not ideal. It is not merely a cosmetic boob job, though I have no problem with those. I have absolutely no feeling in my breasts nor am I likely to ever have it again. I do not have the ability to feel pleasure or arousal in these new boobs. They feel like an appendage not quite unlike my elbow. They are not soft, or sensual at all and at the moment have no nipples only scars that constantly remind me of my loss. I have trouble hugging the people I love and am truly uncomfortable when my 6 year old son sits in my lap though I wouldn't dare tell him. My daughter can't bear to look at them and turns away when I walk into the room topless.

So am I lucky? I would say no. Am I alive? Yes. For now I'll focus on the curves and give the middle finger to all my pubescent friends who made fun of my AA chest. And with all of the grace, elegance and civility I can muster, I will proudly say "Suck it! and Excuse me but my eyes are up HERE!"