Tag: Breast Cancer

Accepting the New Me

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“The only constant in life is change.” – Heraclitus

It’s funny when I think about it. I’ve always loved the word ‘capricious’. I think it was one of my vocabulary words in a middle school English class. I loved the way it sounded, rolled off my tongue.  It was also a word that made you sound smart. People kind of look at you with an inquisitive eye, when it is thrown into a sentence. I’m not sure why I’ve always loved that word, but now it is a word that I have become accustomed to in my daily life.

Capricious.

Ever changing.

If you know me well, then you know for more than a year and a half now life in our household has been anything but predictable.  Once we feel like we have one fire put out, another one starts to burn. Don’t get me wrong.  I’m not complaining. It’s just that, there are moments when I want to raise my arms in the air and yell, ‘UNCLE!”

The past year and a half (longer really), has seen my dad battle metastatic cancer; my daughter being diagnosed with an eye condition that will more than likely leave her severely visually impaired someday; a genetic mutation that I need to come to terms with both for myself and my children; a surgery, that although elective, was necessary; a diagnosis of cancer; and an infection that was so bad, that I am questioning having another surgery to make myself look like I once did.

After the second surgery

After my second surgery, I already knew what to expect as far as my drains were concerned. We had a beat, a rhythm to the process. A system in place to deal with my drains and all that they entailed. The dreaded drains, although a major pain in my sides (pun intended), were a little easier to deal with since there were only two and not four. I was emitting far less liquid than the last time the drains were in, and it stayed its fruit punch color the entire week, never changing to the milky, pinkish, red color that emitted a funky odor (clearly a sign of infection) after the last surgery.

What I didn’t expect, was what I would look like after my expanders had been removed due to the infection.

Taking off the surgical bra for the first time to take a shower was a little bit shocking.

As far back as I can remember, I had always had a large chest, but when the surgical bra came off and I peeled away the bandages, I looked nothing like I once had. You see, when the expanders were put in after my first surgery, I didn’t look much different. I looked more like myself, just a little smaller with a ‘lift’.

But this time it was different.

This time I looked like I had been sewn together like a Cabbage Patch Kid. The skin flaps, and minimal amount of fat, left behind amounted to what would be an A/B cup. I was speechless and then began to cry. Sob actually. It all hit at once – what I had been through, what I had to deal with and what was yet to come.

This was my new normal…

Drain removal

The week after my second surgery I had an appointment to meet with the plastic surgeon. He was going to check my incisions and remove the drains. It was Tuesday, March 31 and we were in full swing of the Covid-19 pandemic. Going to the doctor’s office was not on my top 10 list of things to do.

As a matter of fact, it wasn’t on my top 100, but I needed to get it done. So once again, I packed a gallon-sized zip lock bag with hand sanitizer, ID, insurance card, Clorox wipes and masks, then headed to his office 45 minutes away.

As we drove in the rain, my stomach was in knots. I didn’t want to interface with anyone and I was scared that the drain removal would hurt as much as it did the first time. To say I was sweating bullets would be an understatement.

As we pulled into the office parking lot, my husband and I donned our masks. I got a Clorox wipe out of my baggie to press the call button to his office. I opened the door with the same wipe, promptly throwing it into the garbage inside the office door, then used hand sanitizer like my life depended on it.

At that moment, who knew? Maybe it did.

The waiting room had another couple getting ready to leave. I was antsy, not wanting to be near anyone. I was sure to stand far away from them. I didn’t dare sit down. I just wanted to get out of this place as fast as I could.

Before I knew it, my husband and I were ushered back to an exam room where I laid down on the reclining exam chair. The doctor came in, made very little small talk, and then got to work removing my drains. He gave me the same instructions. Take a deep breath and hold. As he pulled there was a little burning, but nothing like what I experienced weeks before.

There were no tears, no yelling and no compulsion to curse. Just a little, ‘ouch’ escaped my lips. It was over as fast as it had begun. He said he would see me soon. I said in six months, he said, no probably in three.

I thought to myself, ‘we’ll see…..’

Telemedicine and what comes next

Here’s the funny thing about being diagnosed with a disease in the very early stages AFTER it has already been removed…

There’s nothing else to do.

Yup, you read that right. At least in my case, there is nothing left for me to do.

The cancer was removed even before I even knew I had it. Which was the point of the mastectomy in the first place, to beat my chance of having cancer, but I never thought it would be actively treating current cancer at the same time.

This leaves me feeling both scared and relieved. Relieved that I don’t have to do anything else, but scared that I am missing something and not being proactive and protecting myself.

I spoke with two oncologists via telemedicine regarding my case. I wasn’t 100% satisfied with what the first doctor told me, so I made an appointment with a second doctor, one I had seen in the city months before when trying to decide if I wanted to have a bilateral mastectomy.

Both said the same exact thing. ‘All’ (I place all in quotes because they can never really remove all of the breast tissue) of the breast tissue had been removed, my lymph nodes were not involved, they got clean margins, it was caught so early and the chance of recurrence was low, there is no need to treat me with medication or radiation.

Treating me with medication would not lower my recurrence rate any further and may actually cause other problems. I don’t need radiation since there was nothing left to radiate. And both stated that after a mastectomy, they don’t treat patients with those therapies anyway.

That was it. Cut and dry. Two different doctors, from two different hospitals telling me the exact same thing.

The only thing they differed on was that the second oncologist I spoke with was well-versed in my genetic mutation and gave me a more thorough explanation of my pathology findings. She also asked that I see her once a year for a check-up and chest wall exam and suggested I get two chest wall exams a year. One with her and one with either my breast surgeon or GYN. I like her much better than the first oncologist I spoke with, so I’ve decided to go with her.

And so we’ll move forward.

My new normal

So many people have asked me how I am feeling, especially since my body has changed so much in the past three months. I’ve been told that I carry myself differently and am standing up straighter these days. That I actually seem ‘lighter’ in body, mind and spirit.

To a point, I agree. There are still days when I feel sadness and anxiety. This has been more mentally taxing than I ever thought it would be.

It’s funny, a couple of weeks ago I had just started back into a light exercise routine. I told my husband I wanted to go for a run. I was curious to see what it would feel like. As we started out it was the most surreal experience.

For the first time ever, I could take a deep breath as I started on my journey. There was no heaviness pressing down. There was no constant motion of my chest as I took each step that propelled me forward.

All there was, was a sense of freedom.

Freedom to breathe, freedom to let go, freedom to say, ‘this is my new normal’.

Here I Go Again…

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Fear.

An unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain or a threat.

Fear.

An emotion I am becoming accustomed to.

Back to surgery

The morning of March 23rd my plastic surgeon called around 8 am. He confirmed I was an ‘add-on’ to the surgery schedule and needed to be at the hospital by 10:30 am. My surgery, scheduled for 11:30 am, is now deemed an emergency, because not only have I been weeping out of my incision sites for the past two and a half days, we are also now in the middle of a pandemic.

To say I am scared to death is an understatement.

During the operation my surgeon will remove the expanders, clean out the bilateral infection and place the dreaded drains back in my body.  Make no mistake, this infection is bad. It burns. It itches. I’m oozing and swollen. As I pack a gallon size plastic bag with hand sanitizer, Clorox wipes, gloves and a face mask, I have so much fear and trepidation in my heart.

I keep praying. I ask the Lord to protect me during this next leg of my journey.     

Arriving at the hospital

I told my husband I wanted to drive us to the hospital. I was a nervous wreck and wanted control over something that morning and riding shotgun was not going to cut it.

The thought of going into a medical facility with Covid-19 running rampant did not sit well with me. My surgery was being performed in a county that had a high rate of cases already, and were on the rise each day. I was also returning to the place that gave me an unexpected parting gift after my last surgery – a nasty infection.

These two facts had me in knots, but once again… like so many other times during this journey… I had no choice.

I had to keep moving forward and trust in God.

Once we arrived at the hospital and parked the car, I put on my face mask, shoved my driver’s license, insurance card and a pair of blue rubber gloves in a plastic baggie in my pocket. I made my way towards the hospital entrance with my husband by my side. This was the second time we were at this facility within a month to have surgery.

Unfortunately, this time was different.

This time my husband could not escort me in, comfort me as I waited to be called back for my procedure or watch the patient board in the family waiting area to see how my surgery was going or when it was finished.

Nope, this time he had to stand at the doorway of the hospital and watch me walk down the corridor alone.  Because of Covid-19, this time he had to sit and wait in the car until my surgeon called to tell him I was out of surgery.

There would be no opportunity to shout my triumphant mantra to my supporters as I proceeded alone.

Walking into the hospital

With my heart in my throat and beads of sweat on my brow, I pulled down my mask, kissed my husband goodbye, then put it back into place. I began walking down the corridor to enter into the hospital, not daring to turn around for one last look at my husband for fear I would begin to cry. It wasn’t lost on me that this stretch of walkway between leaving my husband and reaching my destination inside the facility must be what it is like to cross over to the other side. Completely on your own, no one around, eerily quiet, bright white light and walking into the unknown.

As I entered into the hospital, I was stopped at the front door by a guard questioning my reason for being there (sort of like the hospital equivalent of Peter at the Pearly Gates). He directed me to another desk where a congenial young man asked me my name. I told him and he asked me to spell it. After spelling my name he smiled with his eyes and said, ‘my last name is the same as your maiden name! I’ve never met anyone with my last name’. In a way, it was like he was put there in that moment to somehow be my ‘family’, take my mind off of everything and make me smile under my mask.

A different feeling at check-in

I ascended a flight of steps to the check-in desk. The thought of pushing an elevator button and getting into an elevator just was not appealing to me.  I didn’t want to touch ANYTHING. As I approached the desk, there was no one in the waiting area. They didn’t even have me sit down or pull out my driver’s license or insurance card.  They did however ask me to sign some forms. I searched my pockets and realized that I had forgotten my own pen at home.

Damn it!

I stared at the pens on the desk for what felt like an eternity. The woman sensed my uneasiness in picking up a pen and told me the ones with the caps on were new and no one had touched them. Oh really? They just magically jumped out of the box they came in and did the cha-cha slide onto the counter?

I don’t think so…

I took a deep breath through my mask and picked up the pen that might as well have been kryptonite, signed what needed to be signed and then promptly asked her for hand sanitizer after I was finished using it.

Prepping for surgery

I kept reminding myself that everyone in this facility was just as uneasy around me as I was around them.  You could see the concern in the eyes of the nurses. I went through the same routine as my first surgery, except this time things moved much faster. There was almost no other patients waiting for surgery. It was a ghost town.

My doctor came in, we exchanged quick pleasantries, he had me sign forms saying I understood what he was about to do. I was super anxious and was on the verge of tears.  I told him I was worried. He said they all were because of Covid-19, but it was going to be ok.

After changing into my hospital gown I had two nurses working with me, taking vitals and asking questions. One of them recognized me from my first surgery. They both tried to keep me calm, making small talk. They did an excellent job. Before I knew it, I was being wheeled down to the operating room. This time there was no family around to give me one last hug or wish me well.  This time, I just had tears running down my face and fear in my heart. 

Please Lord, let this go well. Let them get this all cleaned out and under control. Please let me make it through.

After being wheeled into the operating room and switching from bed to operating table, the nurses made small talk. One had recognized me from my first surgery. The room was cold and they put blankets over me. I noticed a random hair on the operating table and flicked it off with my fingers, thinking, is it safe to have surgery on this table? I was too nervous to speak up, so I just laid back and let them strap me in for this ride.

As they put the mask that administered anesthesia over my nose and mouth, I recall starting to hyperventilate with a few tears running down my face. I felt like I was having a panic attack in that moment. I remember turning my head and fighting the mask a bit to breathe, while the nurse anesthetist held it into place. Then everything went to black.

Waking up in recovery

I was crying uncontrollably as I woke up in recovery. All the fear and anxiety I had prior to surgery, carried over to when I began to wake up.

 Although I was crying, I clearly remember thinking, thank you Lord! I made it through.

My next thought was, was the infection cleaned out and under control? My doctor was there and said yes, we had made the right choice. Everything was ok. My next thought was, are the drains back in? Yes, they most certainly were.

My post-anesthesia care nurse was terrific. He was extremely kind and attentive. He slowly got me back to the land of the living and mentioned that his young son had the same birthday as me.  Our birthday was coming up in less than two weeks – mine was going to be a major milestone, 50. 

He asked what my pain level was. I said that I was ok; however, under my left breast was burning even more than it was prior to surgery. I later learned that my infection was such that extra skin had to be removed from that side because of the infection – hence the burning.

As I came further out of anesthesia, I asked my nurse to call my husband and let him know I was ok. I was sure he would be worried. He had been sitting in the hospital parking garage in our car for nearly 5 hours!  What else was he going to do? All the stores were closed because of Covid-19 and he couldn’t visit my parents because social distancing was in full effect.

My selfless husband sat in the car, read the Bible, texted and spoke with caring friends and family on the phone, played solitaire, answered work emails and read his Joey Kramer Aerosmith autobiography.

Standing up for the first time

When it was time for me to stand up, my nurse called another nurse over to help him get me on my feet. Before they stood me up they asked how tall I was. I told them that I was little, only 5’1. They started joking back and forth about their heights. I’m not entirely sure why there were two of them there to help me up, but I have to be honest, I am forever thankful.

As I stood up, they each had an arm wrapped around me as I wrapped an arm around each of their waists. I told them that I didn’t want my bottom hanging out of my gown. They were both young guys and I felt self-conscious. I know they are nurses, but that didn’t stop me from being modest. They assured me that I was all covered up and it was ok to stand.

As I stood up I began to sob.  I mean, REALLY sob.  I apologized for my sobbing and told them that I was exhausted, my anxiety level was through the roof and I had been through so much in the past month. Two surgeries, a diagnosis of cancer and drains put back into my body.

I was tired and I had had enough. I felt defeated.

Do you know what those two male nurses did? They stood there, dried my tears, rubbed my back and told me to just let it out.

I had been through more than anyone should have.

It was ok to cry and let it out.

They were some of the most kind and compassionate gentlemen I have ever met. I was so grateful to be in their care. No nurse has ever treated me the way that they did. They saw me as more than a patient. They saw me as a person. A wife, a mother, a sister, a daughter, a woman.  And in that moment, that was the kind of care I needed.  I can’t thank them enough.  They were amazing.

Get me out of here

Once they were sure I could stand and was feeling good enough to go home (I had been in recovery for about two to two and a half hours, which was longer than my actual surgery, which only took an hour and a half), they left me alone to dress.  Looking down at myself I realized I was nearly flat chested and the drains were already doing their job. Fruit punch-colored liquid began to fill each grenade-like bottle.

Oh joy…. Here we go again… This is going to be a long week….

My nurse called my husband to have him meet me outside the hospital entrance. As I was being wheeled down the hallways to the entrance, it wasn’t lost on me that everyone was masked and there were very few people around. Fear started to creep back in. I couldn’t wait to get out of this place.

As we reached the electronic doors, I saw my husband walking towards me.  I jumped out of the wheelchair, motioning him to go back to the car.  I told my handler I could take it from there. I didn’t even wait for her to protest.  Walking briskly towards my husband and not allowing him to get a word in edgewise, I said,

“I’m done! Get me the hell out of here!”

Welcome to the Sh*t Show!

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Zig Ziglar had a point when he said, “F-E-A-R has two meanings – Forget Everything And Run or Face Everything And Rise. The choice is yours.” I choose to rise.

Trust me, over the past several months I have wanted to run – hiding in a closet has looked appealing! But the truth is, I need to face my fears. Actually one of my biggest fears – the diagnosis of breast cancer. Ask anyone who knows me well, and they will tell you I always felt like a ticking time bomb, and the possibility of a diagnosis like this has always been a bonafide fear. What I do with that fear, is up to me…

Stolen joy

After learning the news that breast cancer was found, I felt defeated. I thought I had beat it to the punch and won.  That joyful, carefree feeling I had immediately following surgery, and the week after, was GONE. In its place came sadness, fear, frustration and anger. I barely could utter the words ‘breast cancer’. It made me sick to my stomach.

Recovery not going quite as planned

In the midst of learning the news that I wasn’t free and clear, that I couldn’t just move forward but had to speak with an oncologist, I was still trying to heal and recover from surgery. Everything seemed to be going ok…

Until it wasn’t.

Removal of the dreaded drains

I was two weeks and one day post-surgery. The day I had been looking forward to since the day I had my surgery. This was the day the four grenade-like bulbs that hung from tubes coming out of my sides would be removed. The drains. I would finally be free to move about and do what I wanted to do, wear what I wanted to wear and shower without a chaperone. Today was going to be a good day!

Pain like I have never felt before, and mind you, I have given birth to twins

Going back to the exam room, I didn’t think much about drain removal.  I tried not to read too much on the Internet prior to having my surgery, because everyone has different experiences and I wanted to go into each phase of this journey without any preconceived notions. I just didn’t want to know the intricacies of how all of this worked and what would happen.

And thank goodness I didn’t, because I am not so sure I would have willingly laid back on the exam chair and let the doctor pull out the drains.

I asked if I would be getting an injection of something to numb the area where the drains were going to be pulled from. My doctor said no and that it would be over before I knew it.  As he and his nurse carefully ‘milked’ the last bit of what was in the tubes into the drain bulbs and clipped the stitches that held the drain tubes in place on my sides, I flinched as I felt the sting of what felt like 1,000 tiny needles being jabbed into my side.

I remained quiet, eyes watering, wincing in pain, thinking, this isn’t going to be good considering all they just did was clip stitches. My husband could see the distress on my face and held my hands that were raised just above my head. He told me to squeeze.

The doctor told me to take a deep breath and hold it. As I did that he pulled the drains out of my right side.

OMG!!!!!!!

The pain I felt was like NOTHING I have ever felt before. It was like WALKING.THROUGH.FIRE. My sides were on FIRE!!!!!!

I could feel myself hyperventilating, shaking and starting to well up in pain. I tried to keep myself under control, squeezing my husband’s hands like my life depended on it.  I literally started to say the Hail Mary out loud while lying in the chair. I think the doctor thought I was bonkers!

Before I finished my prayer or could protest, the surgeon moved to the other side of my body where he gave me the same instructions to take a deep breath and hold it.  And again, as he pulled, which felt like a violent yank, the pain and burning was something I had never felt before. I yelled in pain fairly loudly, not caring that there were patients in his waiting room or that it was unladylike or that I was losing control in the chair. To be honest, everyone in that room (and the waiting room) was lucky I didn’t curse like a sailor, because that is EXACTLY what I wanted to do.

As soon as the drains were removed, I pulled my knees to my chest because I began to feel like I was going to vomit. Then I felt like I was going to faint. It is amazing what goes through your head when you are in that much pain!

I was literally sweating and my heart was racing. The sweet nurse who helped remove the drains left the room to get me a cup of water. I thought I was going to have a heart attack.  I had no idea what had just happened to me, but I didn’t like it. I felt violated. I took a sip of water, then got up. Walked out of the office and thought good riddance…..I will NEVER have to have drains put in again.

Cue the Sh*t Show

Six hours after my drains were removed, I spiked a fever of 102 degrees.  I was shaking and not feeling well at all.  I attributed it the trauma my body had been through just hours before, but decided to call my doctor and tell him what was going on.  He prescribed an antibiotic for me to take 4 times a day and asked that I keep an eye on my temperature.

I was still running a temperature after being on the antibiotic for more than 48 hours and I was really not myself. I was tired, no appetite and just achy. I also developed red blotches all over my right breast and some on my left. My right side seemed a bit swollen. The red areas were warm. This was not a good sign.

I called my doctor to explain my situation. He said he wanted to see me first thing in the morning – which was a Sunday. He said I may need surgery to clean out the infection and remove my expanders, which had started the reconstruction.

As I hung up the phone, I cried. I was scared to death. So I did what I always do when my back is up against a wall and there is complete fear in my heart.

I prayed.

I prayed my fever would subside by morning and I prayed I wouldn’t need surgery the next day. I asked God and all my favorite Saints for protection. I just couldn’t go through this again.

It’s an infection alright

Miraculously, my fever had subsided overnight, but we still had to go meet with the surgeon because I was still red and swollen.  We arrived at this office at 8:30 am. He took one look at me and said there was more than likely an infection and he needed to take samples from each breast to be cultured, but because my fever had dissipated, he would hold off on doing surgery and see if the antibiotic could do its job. We were in and out of his office within 20 minutes. We headed home, picked up the kids and headed to Sunday mass. I had a lot to be thankful for.

A week later it was confirmed that I had a bilateral infection. The bacteria was serratia marcescens. This type of bacterial infection has been known to be hospital-acquired during surgery.

My doctor needed to change my antibiotic.  He put me on something that could battle the infection better than what I was on. I prayed this was the magic pill. I didn’t want to have to go back in to surgery. The thought of having to be cleaned out, expanders removed and drains put back in had me in knots. So did the thought of going back into the hospital for surgery. Covid-19 was just beginning to spread throughout the United States. The NBA had just canceled its season and MLB wasn’t far behind.

Healed incisions are leaking – this isn’t good

After being on the antibiotic for nearly two weeks. I was feeling good. My energy level was back up and my appetite was getting back to normal.  I still had a little swelling and tightness, but didn’t think much of it. I figured it was normal (because truth be told, you have no idea what normal is when you are going through having a body part – or in my case two – removed from your body and two foreign objects put back in).

Friday, March 20th was no different than any other day.

I didn’t really do anything strenuous, so when I went to shower and change for bed and saw my scabbed incisions were weeping slightly, I took notice.  It reminded me of the times I had skinned my knee as a kid. The wound would heal, but on occasion the scab would separate from the skin and the wound would weep. I thought, maybe this is normal.  Maybe this happens.

I called my mom immediately, wanting her to talk me off the ledge. We both agreed that if it didn’t clear up by morning, I needed to call my doctor. I placed gauze in my bra and went to bed. By 4 am I woke up with a sticky wet chest. The weeping had gone through the gauze, through my bra and onto my t-shirt.

I waited until 7 am to call my surgeon. I sent him pictures of the incisions and what the skin around them looked like.  He instructed me to keep the area clean and dry. He said that I should place surgical pads in my bra to absorb the fluid draining from the incisions and change them several times a day. He said that he would speak to me first thing Monday morning to check in.

He would be scheduling me for what was now considered a necessary surgery in the midst of Covid-19.  He needed to remove the expanders, clean out the infection and put the drains back in. I really didn’t have a choice.

The antibiotic was only doing so much and the timing of Covid-19 was working against us. He wanted me in before the pandemic became worse. I began to choke up telling him I was terrified to enter into a hospital under these circumstances. I didn’t want anyone touching me during the pandemic outbreak.  But the truth is, I didn’t have a choice.

As I hung up the phone I thought, the entire world is in chaos and now so am I.

Ta-ta to the Tatas…Hello to the Hooters!

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Ta-ta to the tatas. Hello to the hooters! This is the mantra that I have been saying to myself, out loud on occasion, since I decided to have a prophylactic bilateral mastectomy with reconstruction.  I repeat this mantra as a way to lighten my mood when the thoughts in my head become a little too heavy; or a way to make my three teenagers laugh when there is fear in their eyes; or a method to ease the worry lines that I can clearly see on my sweet husband’s face as he tries to be brave for me.

This little mantra comes with a story.  It’s my story and one I believe is important to tell.

It’s all about genetics

In the spring of 2019 my parents called saying that my dad, who was being treated for metastatic colon cancer, had a genetic test done to help better understand how to treat his cancer.  The testing uncovered a genetic mutation in his ATM gene.  The geneticist strongly suggested that my brothers and I get tested for the mutation as well.  Each of us had a 50% chance of inheriting this mutation.

Since there was a lot going on with my kids (that’s a blog for a later date), and summer was coming, I didn’t want to cloud my mind with the test and its possible results because, you know that feeling you get in the pit of your stomach, when you know something is wrong and there is no denying it?  Well, that was the feeling I got.  I had a deep feeling in my gut I was going to test positive for this mutation. So, I decided to wait until the Fall, after the kids were back in school and we had enjoyed vacations and summer relaxation.

Genetic testing

I went for genetic testing at a well-known cancer center the day after my kids, my oldest a Senior and my twins eighth graders, went back to school in September. I was early for my appointment and really nervous. The counselor was on the phone in her office when I arrived, so I sat, waited and people watched from a chair that faced the entrance of the facility. As I watched people coming in and going out, my stomach churned, my heart raced, and I had an acute sense of sadness and trepidation wondering what each person’s story was and what mine might be.

Once the counselor finished her call, she called me back to her office, introduced herself and started the meeting by going over the family history packet I had sent her weeks before.  It was filled with names of family members, some I knew, some I didn’t; their relation to me; whether they had cancer or not; if they had cancer what type; whether they were alive or deceased; if they were deceased at what age did they pass and from what.  It was a lot of information to process and wrap my brain around.

I hadn’t realized until I had taken the time to fill out the packet with my parents weeks before, how many of my dad’s cousins had had breast cancer. I knew my aunt had been diagnosed with it in her 60s and beat it. But that was about it.  I don’t think any of us ever gave it a second thought until this gene mutation was uncovered.

After going through the packet, the counselor and I discussed the specific mutation and what it would mean if I had it.  I told her that I already knew the results and this was just to confirm what I already knew. I remember her smiling saying, ‘there is no way you could possibly know that.’ Call it female intuition, call me a witch (joking), but deep in my gut, I knew I did.

After our hour-long discussion, the counselor took me up a flight of stairs to a nurse waiting to draw a vial of my blood. As I sat in the chair and the nurse tied the rubber band around my upper arm, I remember thinking, ‘please let my gut be wrong, please don’t let me have this genetic mutation’. And as quickly as the thought passed through my mind, I felt the needle leave my arm and a Band-aid put in its place. I got out of the chair, walked down the steps and out into the sunshine, with a black cloud hanging over my head.

Your gut is always right

Two weeks later, I got a call from the genetics counselor.  She was very quiet and asked me if I was driving.  I told her I was not and said, ‘I know. I tested positive.’ We scheduled another appointment for me to come in so she could instruct me on my next steps.

Those next steps included getting the name and number of a breast surgeon and counseling me on what the results meant. Although this mutation increases my chances of getting a few different types of cancer, breast cancer was the one that showed the highest percentage of risk based on not only the mutation, but family history.

Options, but really no option at all

My husband and I went to meet with the breast surgeon in early October. Heading into the office we were nervous, but not overly concerned.  We thought it was a simple visit that would ultimately result in him telling us that I needed to go for more frequent testing and nothing more.

After an examination, discussion of my family history and a look at the breast imaging I have had over the years, we went into a small office and discussed my options. The surgeon was very serious and told us that because of the mutation and my family history, I am 50% likely to get breast cancer in my lifetime. At that moment, the world stopped.  I was stunned. I could feel myself get a little queasy and I went hot from the top of my head to the soles of my feet. Fifty percent. Fifty, fifty shot. The odds were not in my favor.   Leaving my chance of getting breast cancer up to what would amount to a coin toss, didn’t sit well with me.

He then gave me my options.  I could either go through a rigorous schedule of screenings every six months for the rest of my life that include a breast MRI and then six months later a mammography and ultrasound, with professional breast exams thrown in in between and the incessant worry of ‘will this be the time they find something’, or a prophylactic bilateral mastectomy.

I have been through mammograms and ultrasounds. I have even had a breast MRI (most recently in November 2019).  I have been on the other end of receiving unsettling news that they have found something in my mammography and ultrasound and a breast biopsy is needed. I’ve had a breast biopsy.  I have been sick to my stomach and shaking with fear and worry for days, to the point of nearly having a panic attack waiting for results. I’ve been terrified and nearly jumped out of my skin every time the phone rang waiting for results.  Irrational, yes. A terrible way to live.  Absolutely. And this was BEFORE I realized I had a genetic mutation.

As the doctor continued to speak with us, my gut was telling me although I had ‘options’, I really had no option at all.  My only real choice was mastectomy.  I blurted this out to the doctor, who told me to slow down, meet with the plastic surgeon and really think about it.  I told him I would, but my mind was already made up. No matter how upsetting it was.

My poor husband looked sheet white and I had that sickening feeling as we left the office. We got in the car and I cried the whole way home. I cried out of fear. I cried out of anger. I cried out of mourning. I just cried.

Fear, sadness, clarity

Although my gut was telling me that surgery was the way to go, I was still feeling fear and sadness. I decided to not make any decisions until after the holidays and really think about my options.  I met with a plastic surgeon and oncologist as well, just to make sure I had all the facts and understood the mutation and what having surgery meant.

My sadness ebbed and flowed over the next three months. I tried to compartmentalize this part of my life as much as I could over the holidays. Trying not to dwell on things. But there were moments that I would read something and begin to cry and feel terrified.  I cried while looking at pictures online of what a mastectomy looked like.  I cried when I read about reconstruction and what that entailed. I cried reading about not having any feeling in my chest once the surgery was over. I would cry speaking to friends and family about my fear of surgery and recovery. I cried when I got the garment I would need to wear following my surgery from the place I had been getting bras from since I first started wearing one.

But with all these tears came one thought.  I have been given a gift that most people are not given.  I have been given fair warning. I have been given a shot at lowering my risk. I have been given a blessing.

One more appointment

I made one more appointment with the breast surgeon, just to confirm my decision and be sure I wanted him removing something that has been a part of me for almost 50 years. Something I have always had a love/hate relationship with.

I am a 36DD, which to some may not seem big, but trust me, my breasts are ALWAYS IN THE WAY.  It’s funny when I think about it.  I can’t swing a golf club properly and doing a push up is a bit easier for me than most because I have less distance to go to the floor to touch my chest.

It’s almost laughable too, because being as full-breasted as I am, I have never once in my lifetime thought about stuffing my bra or needing implants. Nor have I ever dreamed of not having to wear a bra when stepping foot out of my home.  I can’t imagine walking out of the house braless, unless of course I want my tatas hanging to my tummy (I am nearly 50 and have nursed three children).  So, the thought of having them removed and replaced with something smaller is both scary and somewhat curious.

Using laughter to make it easier

There’s been a lot of joking along the way over the past several months along with the tears. Getting implants was one thing I never thought I would do, and here I am.  I also never thought I would get a tattoo, and I may be getting two since I am not a candidate for nipple sparing.  I also just saw an advertisement online from my beloved bra shop for tasseled pasties. Probably not something I will ever get, BUT something I could NEVER have worn before.  They would have pointed to the floor!  So with all of what seems daunting there are giggles in between. The possibilities are endless….LOL!

Balancing peace with fear

This may seem a bit strange, but I have felt at peace with my decision to have the procedure done, even before I walked into the surgeon’s office. Yes, I’ve cried. Yes, I have struggled. Yes, I’m scared, but I am at peace.  By making this choice I am giving myself a fighting chance.  One that I may not have had, if I did not have the genetic testing done. This I view as a blessing. So, on Wednesday, February 19th, I said ‘ta-ta to the tatas’ and am now waiting to say ‘hello to the hooters’.

*A special note. This blog was written before my surgery on February 19th and Covid-19 hit in full force in the United States. My story has taken some twists and turns since then. Please check  back soon if you would like to follow my journey.