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!"

My Daddy's Old Blue Genes

For years, people, including medical professionals, have been telling me that I don't have to worry about cancer simply because my mother doesn't have it.

"Does your sister have it?" is what they would ask when told that my Mom was clear, to which I would reply:"Ummmm, I don't have a sister."
"Well then I'd say you don't have much to worry about."
Simple as that. Nothing to worry about obviously. Silly me.

It wasn't until moving to Los Angeles in my mid-twenties that we really started to pay more attention. At the age of thirty, by request of my gynecologist, I began yearly Mammogram screenings inbetween pregnancies. I had my first core needle biopsy at age thirty three. Words like dense and fibrocystic were thrown around while I was sent home to put a bag of frozen peas on my breast and figure out how to nurse a two year old with a painful hole in my boob.

Because despite all of my concern, everyone was still of the belief that I had no reason to worry about Breast Cancer because my Mother did not have it.

Little did everyone know......I look just like my Dad.



As you can see, I am my father's daughter. I have is eyes, his build, his sweet sense of goofy wit and now it seems, his cancer. Out of the eight people in three generations my of father's family, six of us have cancer. Too many to be a coincidence, but genetic? Some are still not convinced.

Recently, I was BRCA 1 & 2 gene tested and was told that I had no mutation in that gene.
"Don't worry" the doctor said "You have a mutation on a gene but it's undetermined, we'll let you know as we learn more about it."

Undetermined??? Don't worry? She might as well have said 'At least my mother doesn't have it?'

How can you look at that chart and tell me we don't have a genetic link? How can you look at that chart and tell me not to worry? I thank God everyday that my Mother doesn't have cancer and I pester my father often to have everything checked. I know that when he goes to the doctor, they will listen and take care of him.

 

 At least he can say, his mother had it and maybe be taken seriously.

For My 40th Birthday, I Want...Breast Cancer?

4 Months Post Bilateral Mastectomy
Photo by Eric Von Bargen

I don't care what anyone says, forty is an impossible age for women. I think that it's because after all the time we have spent snagging the man of our dreams, creating a career of a lifetime and giving birth to the most adorable children in the world, we realize, in short, that we have failed to make any time to care for ourselves. Not only is our youth fading, but our looks and health are too and that is depressing and quite frankly...sucks.

 

So when I entered my 39th year, I thought I had it in the bag. I was after all, in great shape. I had been eating right for years and had just recently at the age of thirty-seven gone from running sparsely and pathetically to running 4 marathons a year. I was cocky, competitive, healthy and pleased on what I termed "the downhill slope" to forty.

 

Enter Breast Cancer...

 

Let me start by saying, you can do all the preventative work prescribed by countless doctors, shamans, yoginis or even the homeless guy on Hollywood Blvd. but in the end, you just can't beat crappy genetics. That's how I got here seven months shy of my fortieth birthday with a bilateral mastectomy, no nipples and some pretty circus-freaky tissue expanders.

 

Welcome to my world. Pull up a chair and sit a spell. We can laugh together, cry together and full on rage at the world together. Whether you're going through cancer yourself or love someone who is, you are welcome. So Bye, Bye Booby.....Bye, Bye.....