Vinnie

Two little circles, that’s what they are. Two little circles.

How can it be that two little circles can make me feel so complete.

When I started this mastectomy journey, I had so many different emotions and fears about having my breasts removed. I remember the last time my husband and I made love before the surgery; I realized that this would be the last time I would have erotic sensations from having him touch my nipples. I mourned that loss as it was definitely part of our foreplay and I was angry that I had to give it up.

But once my breasts and nipples were gone, there was something else that I was mourning. Many women say that one of the hardest parts of having a mastectomy is the first time you see yourself in the mirror and your breasts are gone. I have to admit that this was very difficult for me and I almost threw up when I saw a full frontal view of myself. Over the months and during the saline fills, I watched my breasts slowly reappear and then when we swapped the expanders for the implants, I thought I would feel complete.

But something was missing. Two little circles, two little circles…my nipples. Every day, when I got out of the shower, my eyes focused on the incision lines from the major surgeries and the dings and dents from the biopsies and lumpectomies that occurred prior to the mastectomy. I focused on the imperfections that reminded me of all I had gone through. Of course, I felt blessed and thankful that I was alive and pray every day, after having survived two cancer journeys, that these traumatic experiences are behind me and I can move on. Nonetheless, I did not see breasts when I looked in the mirror, but instead I saw the scars from my journey.

My husband and I had many discussions on whether I should have nipple reconstruction, whereas a physician would take skin from other parts of my body, called donor sites, to reconstruct my nipples or if I would get 3-D tattoos. I decided to go with the tattoos for many reason with the most prevalent one being that I did not want to have any more surgeries. After 4 biopsies, 3 lumpectomies, countless mammograms, ultrasounds and MRI’s, a double mastectomy and then reconstructive surgery, I did not want to have to recover from another procedure. 3-D nipple tattooing takes 1 hour from start to finish.

On May 3rd, 2017, we arrived at Little Vinnie’s Tattoo Parlor just prior to our 1pm appointment. This is located in Finksburg, MD, which is a 3 ½ hour drive for us. I told my husband he had to be my wing-man, making sure that each nipple went on each breast in the same spot. The last thing I needed was to have my nipples looking like Igor’s eyes from Young Frankenstein (played by Marty Feldman in the movie) with one looking one way and the other looking another.

After filling out some routine paperwork, we were told that Vinnie was ready for us and we were brought into a small room and waited for him to arrive. Besides his signature hat that he seems to always wear, the one thing that stood out about him were his piercing blue eyes. Over the years, Vinnie has worked with thousands of women to create and complete nipples for breasts that were interrupted by cancer and I could not help but think that those blue eyes have guided him in each of his works of art.

We quickly got to work. He asked me to stand in front of him and he began to draw circles in the places he thought my nipples might look best. Being the super prepared, obsessive person that I am, I whipped out photos of my original nipples for comparison sake to show him what I was aiming for. After a couple of tweaks, we all agreed as to where they would look best and Vinnie started the procedure.

Many people asked me if it hurt during the tattooing and, to my surprise, it was mildly uncomfortable but completely foreshadowed by the fun, lighthearted conversation that my husband, Vinnie and I had during our hour visit. Vinnie shared that he had four children and we swapped stories about how much college cost and how hard we collectively worked as parents to get our kids through it without them incurring enormous debt when they graduated. We joked and talked about many things, which made the hour pass quickly. When all was done with the first nipple, he swiveled my chair around so I could take a look in a full length mirror and, whoa, I could not believe what I saw. I saw my breasts take on a new incredible look, one which I had not seen since before this journey began. I did not see the scars, the dings, the dents, the imperfections. Instead, I saw a real looking breast and it made me feel complete and happy. With our thumbs up, Vinnie went on to create a mirror image on my other breast.

I do not think I am a superficial person and I completely recognize that these new nipples were not going to be publicly displayed. I am a 53 years old married woman and mother; I am not going to show them to the world, be in a wet tee-shirt contest and more or less, the only people that will likely see them will be me, my husband and my physician. Furthermore, I realize that they do not serve a useful function in my life. I will not be nursing and nurturing a baby. Essentially, they were there for me and only for me.
Once he was finished, we thanked Vinnie for his work and off he went to help the next woman that had come to him to find closure and completion. I remember during the car ride home taking a peek at my nipples every 15 minutes or so and laughing, not in a HA HA way, but more in a Woo Hoo, this is great kind of way.

In a screwed up situation when you have to do something so extreme such as removing your breast, albeit for the most important reason to potentially save your life, there is something nice to be said about having someone that can bring some confidence and happiness to you with his incredible talent and eyes of perfection. Tomorrow I will wake up and no longer feel damaged; I will feel complete.

Who’s looking at YOU?

The lady with the sultry voice on the navigation system in our car announces that we will arrive at our final destination in 5 minutes. Suddenly and quite unexpectedly, my heart starts to pound and I begin to sweat. I silently try to calm myself down but after a minute or two of trying, I turn to my husband and say, “Dan, I’m not sure if I can do this.” He is totally taken aback and pulls the car over to the side of the road.

Today should be a happy day. Today my husband and I are attending the wedding of one of my closest friends’ son. It will likely be a wonderful party with lots of good food, wine and dancing. However, for me, it is also the first time that I am attending a fancy social event following my double mastectomy. It’s the first time that I am getting dressed up in big girl clothes with high heels to head out for a night on the town. Sounds like fun, doesn’t it?

When I accepted the invitation and through the months leading up to the wedding, I was excited to have something to look forward to. After all, for close to two months I was restricted by my surgery and the down time for healing. What I didn’t realize is that this was one of the first times that people – not close friends – but other people were going to see me after my surgery. One thing I know for certain is that things have changed as a result of my surgery. Let me explain. Prior to having a double mastectomy and before anything ever happened with my breasts, people looked into my eyes when they met me. Since then, people look down at my breasts first and then look up. Some may think I am being overly sensitive or paranoid, but I’m not. Trust me, as a small B cup prior to my surgery, my breasts were not something anyone was interested in taking a peek at. But now they are and that makes me feel uncomfortable and different than I was before. I worried that I would see a sorrowful look in their eyes or, worse yet, feel pitied by these people.

As we sat on the side of the road, I told Dan I didn’t want to go to the party. However, this clearly wasn’t an option since it would be terribly disappointing to my friend and to me as well. So after a brief but intense discussion, off we went. We arrived at the venue, the Valet guy opened my car door and out I went on shaky legs into the Hall. I grabbed a glass of champagne which calmed me down somewhat.

The anxiety I was feeling totally knocked me off balance. I am not a socially anxious person; I LOVE a good party. I tried to look at myself introspectively to see what was happening and how I could soldier through these feelings and the wedding for that matter. I asked myself, “What are you afraid of? Why are you worried about the people that are attending and what they might think when they see you?” Frankly, the only people I really knew and was close to was the immediate family of the groom. The others were merely acquaintances at best. I reasoned with myself saying things like, “You are a guest at this party. You’re not the mother of the Groom. All eyes are not going to be on you!” Still I was unsettled but with a lot of self-talk and deep breathing, I made it through the Ceremony and headed into the Cocktail Hour.

Stay Calm and Role PlayThat’s when I realized that I needed to identify the people that I was afraid to see, visualize the encounter in my mind (sort of role play it) and map out how I would react to it.  After all, it’s really up to me how I choose to react. So that’s what I did during the Cocktail Hour. I identified the women (and their husbands) that I was worried about seeing at the Reception, visualized their sideway glance downward when they saw me and what I thought they might be thinking as they looked at me.  I decided that they were really inconsequential and I should not care what they did or thought. I wouldn’t let them ruin my night. Lots and lots of self-talk and visualization later and it was time to head into the Reception.

Exactly what I thought and feared would happened occurred. We arrived at our assigned table and sure enough I was greeted by these people in exactly the way I thought I would be. They looked down which gave me that vulnerable, I am different feeling, and then they looked up. But it was OK because I anticipated what would happen beforehand. It happened and it was over.
But the story doesn’t end here and this is where something occurred at the Reception that was completely unexpected. While making my way across the room to congratulate my friend on her son’s wedding, a woman – a total stranger – walked up to me and said, “I just have to tell you, I am on the Board of Director’s for the top Fashion Design School in NYC, and I must say that by far you are the best dressed woman here and you carry the look so well.” You can only imagine how fast my jaw dropped to the ground. Whoa, I did not see that one coming! My reaction: I briefly told her the background of the earlier story, hugged her and thanked her for being there for me tonight.

As a footnote, I did encounter similar social anxiety 3 more times at other events after the wedding, but I knew that there was a chance that this might occur so I was better prepared for the feelings and, as a result, they were not as hard to deal with. As for the original wedding, we danced, we ate and we drank at the Reception, but most importantly we celebrated a beautiful milestone with our dear friends.

One Year Ago – My Double Mastectomy Journey

My double mastectomy took place on Monday, February 1st, 2016 at 9am.  It was performed by two doctors, my breast and plastic surgeon and the surgery lasted 6 hours.

The recommendation that I have a double mastectomy came 3 LONG weeks before the surgery when genetic testing results showed that I tested positive for the breast cancer gene. Prior to the genetic testing, I had 4 biopsies, 3 lumpectomies and a diagnosis of an early Stage cancer.  When the doctors delivered the news that a double mastectomy was my best option, I cried, I screamed, I secretly made plans to ignore the results and run away to a tropical island, and I rocked back and forth in my bed at night holding my head in my hands telling my husband, “I can’t do this.”

Intellectually, I knew it was the right choice to make. By removing my breasts, I decreased my risk of developing an invasive “Stage” cancer from over 50% to less than 1%.  That should be an easy decision, right? I couldn’t wrap my head around making my way to the operating table and having my breasts removed. Instinctively, I knew that I would be changed by this. I can tell you with assurance that it DID change me.  I know this to be true because when I had 10% of my lung removed in 2008 because I was diagnosed with Stage 1A lung cancer, I didn’t feel different from anyone else. A double mastectomy was definitely way more personal.

So I tried to figure out what I was going to do during the 3 weeks prior to the surgery. I looked within myself to see what I did in the past to soothe myself when faced with an uncomfortable, unknown situation. I remember when I was pregnant with my first child, I was nervous about becoming a new mom and worried how I would be able to handle having a baby. I did one of the classic things recommended in the pregnancy books: I nested. So before my mastectomy I decided to clean out closets, drawers and arranged everything in the kitchen and laundry room perfectly. Part of the reason for fixing up the kitchen and laundry room was that I knew that friends and family would be coming to help and I didn’t want them to really know how messy my house usually is.  I journaled because many people told me that this would be therapeutic and helpful during this journey. I highly encourage this to anyone faced with having this surgery so that you can look back when you hit your one-year anniversary to see where you were then and, hopefully, how much stronger you are now.

Another thing I did was to earnestly think about and write down all of the questions I had for both doctors so when I went for my pre-surgical visits I had everything on paper. I woke up in the middle of the night to jot down something and even jumped out of the shower if questions came into my head if I thought I might forget them.  I wanted to have all of the answers and I didn’t want to have any surprises during the surgery and recovery period.

The night before the surgery, my husband and I had to meet the plastic surgeon at his office at 5:30pm for him to draw the surgical markings on my breasts. For those of you that do not know what this means, let me explain.  The surgeon takes a Sharpie and maps out his plan for where he will make the incisions for the procedure the next day.  As I stood before him bra-less, I realized how permanent and personal this was and this was actually going to take place the very next day.

Surgery day.  I must say that very few people saw and intimately knew the real me leading up to the day of surgery. To most people, including my co-workers, everyone admired how brave I was and how wonderfully I was handling the diagnosis and my reaction to the procedure. Countless people told me I was the strongest person they knew. That’s the way I wanted it to be. This was a very personal experience and I only let the people that could handle what was going on in my head know what I was feeling.  This included the doctors. They marveled at how thorough I was in terms of the questions I had and how much I wanted to know prior to the procedure.

So 15 minutes before the surgery, the breast surgeon popped her head into my pre-surgical cubicle where my family and two closest girlfriend’s waited beside me to ask if I had any last minute questions. Everyone present knew how emotional I had really been and expected me to breakdown in tears with some last minute panicked thoughts or questions. So I said to the doctor, “Yes, I do have one question.” To which she responded, “Yes?” My question, “Can you play Billy Joel in the operating room?” Everyone in the room burst into fits of laughter. You see, all of my questions had been answered, except one. I remembered during my pre-surgical visits, the surgeon told me that she was as big a fan of Billy Joel as I am and had recently been to one of his sold out concerts at Madison Square Garden. ‘And she told me long ago that she likes to play music in the operating room.  I figured if I had to lie still for 6 hours I might as well enjoy some great music.  She gave me the thumbs up, I kissed my husband, sons and friends and off I went to the operating room with the hopes that Billy Joel was wrong when he sang “Only the good die young!”

 

Drains, Drains, Go Away!

“Physically, the worst part are the drains.” Not the pain of having your breasts removed, not the limited mobility, not losing your ability to drive. “The worst part are the drains.” That’s what five former mastectomy patients told me before I had the surgery.

Prior to my surgery, I was terrified about having my breasts removed. I wasn’t really worried about pain because I have a pretty high tolerance for pain. After all, when I had my lung surgery in 2008 the surgeon had to spread and crack my ribs to make his way to my lung; that was pretty painful and I soldiered through
that journey. Before my mastectomy, I was more afraid (and pretty angry) about having my life interrupted and becoming dependent on others to do simple, mundane tasks like reaching up into my kitchen cabinet for a coffee cup, my inability to shower, wash my own hair and not being able to cook for my family or DRIVE. hands_intertwined_canstockphoto0765426
Having to forgo driving for 3+ weeks was a big sacrifice and even more so, having to ask family and friends to take me from here to there was very unsettling for me.

Even still, somehow I adjusted to those things. The real tipping point was when I was informed that I would be coming home from the hospital after the mastectomy with the drains. By definition, the drains are 4 tubes connected to the lower part of my breasts (2 on each side) that would be capturing breast fluid in little containers, referred to as bulb syringes. These bulbs would reside in a Fanny Pack wrapped around my waist. I was terrified when told that my husband and I would have to empty the fluid from the bulbs three times a day, measure the amount and report back to the doctor’s office. Not being medically inclined and more than a little squeamish, I became weak in the knees and filled with worry about looking at and handling this breast fluid on a daily basis. I obsessed and worried that the fluid might smell or worse yet leak onto my clothes.

For some out there, this may not be a big issue during your journey. For me, it became a hugely contentious matter because my drains were over achievers and produced an enormous amount of this fluid every day. After a couple of days, I needed to find levity in the situation and started calling this God awful fluid breast juices. I was told that, on average, it takes 10-14 days for the drains to come out, but the staff at my practice said that my drains would probably come out sooner because I was thin and fit.  woman_clock_canstockphoto7558831During the mastectomy, my drains were in 16 LONG days and still putting out lots of breast juices with no end in sight. Finally the surgeon said that they had to come out or I risked getting an infection.  During my second reconstruction surgery, I was once again overflowing with juices and 15 days in I was ready to yank them out myself.  Thankfully they were removed at day 16 once again!

I couldn’t understand it. It’s not like I had these enormous show stopping breasts prior to surgery. I was a small B cup at best. Where was all of this fluid coming from? Puzzling! Another problem with having the drains is that you have to walk around with a fanny pack every day carrying the bulbs that collect the fluid. This Fanny Pack wraps around your waist and sometimes the pack dips low. After a couple of days of the bag dangling down near my crotch area, my sons started to say I looked Gangsta and called the bag my balls. I became accustomed to adjusting the bag every time I sat or stood up so I guess the assessment was pretty accurate.

I’m not sure there is a lesson or “Aha!” moment in this blog except to say that the drains are limiting and challenging, but they are also temporary. Don’t do as I did which was to count the days and have unrealistic expectations that, somehow, I would get them out sooner than later.  They come out when your breast juices are ready to stop flowing. I did not and you do not have control over that. My suggestion is to binge watch Netflix and enjoy your downtime!

Who Knew?

Who knew?

After multiple scans, biopsies, lumpectomies, and a diagnosis of an early Stage breast cancer, I asked the doctor in charge of my breasts at the time, “Why me?” To which she responded, “I don’t know Rosie, you just have shitty breasts.” Nice answer and the impetus to change practices!

The following month as I was preparing to begin Radiation treatment, I received a call from the Genetic Counselor indicating that I tested positive for the Breast Cancer gene.  I immediately called my new Breast Doctor and Oncologist and both agreed that the only way to protect me from developing an invasive “Stage” cancer was to have a double mastectomy.woman disappointed

Fear, panic, thoughts of running away – all of these things flowed in and out of my head.  But I also felt that the only way I could make it to the operating table was with the support of my close family and friends. Here’s where things got a little tricky and when I learned a valuable lesson that is worth sharing.

When a person is scheduled for surgery, let’s say a gallbladder, appendix, even lung surgery, these are internal surgeries that no one can see after they are completed. Sure, you have scars, but they are covered by your clothing for the most part. However, having your breasts removed is a very personal experience and affects women on a different level than another surgery may.  This can make you question your femininity,  sexuality, attractiveness to your significant other and a whole host of other things. It’s hard to describe unless you are actually in this space how vulnerable and wounded you can be going into this surgery. Breasts are on the outside of our body and even though they are also covered with clothes, they are something that people look at.

ESPECIALLY when they know something is up with them!

It’s super important to be very careful who you share your journey with and that you make it crystal clear with them what you’re expectations are as it relates to keeping this information private. Let me explain in greater detail:  Upon learning that I was going to have a double mastectomy, I told my immediate family and some friends what was going on.

friend comfort

My mistake was that I did not make it clear to anyone that they should not share this information with others. Because of that, many people that I’d rather not know were privy to what I assumed was confidential information.  When you live in a suburban, close-knit community such as ours, news like this flies through town. Instead of being my personal journey, it became “this month’s story.” Everyone knew. I could have taken out a full page ad in our local newspaper and less people would have known than had learned via word of mouth.

I felt wounded and betrayed that people I trusted with my story felt that they had the right to share it with others. That being said, it was partly my fault because I did not set boundaries by letting my people know that this information was for their ears only. I assumed that it was understood, but that was not the case. The net of this is that not only did so and so’s friend know, but her husband knew, her kids knew and this was very unsettling for me.

If I could turn the clocks back, I would have done a better job in the communications department. But the past is over for me and I have completely come to terms with people knowing about my surgery, so I turn to you to impart one piece of advice if you are about to embark on this journey:  I encourage you to think long and hard about the circle of friends you share your story with and even more importantly to make it clear to them if you want to keep it private and confidential.  Moving forward, you will avoid a lot of unsettling feelings and anxiety if you communicate your wishes clearly with your people.  Physically, this journey is challenging enough.  It will be easier emotionally if you are in control of and comfortable with who knows your story.