Sunday, June 16, 2013

Turtleneck Nuptials

We stood, with our arms wrapped around each other. He thought it was a long hug, I knew that it was my security blanket. He felt my lungs hiccup with air and asked 'what's wrong', I said in a quivered voice 'I'm scared'.


After being back from India for two weeks, after feeling good about life and living, after feeling a little more fulfilled than before I left and feeling worthy of love, Keith proposed to me. I have been giddy ever since. I am so proud to wear his ring, I am so proud to be his wife someday. I am proud to call him mine.

I haven't tried on a wedding dress yet as I feel like my mastectomy scars will be the spotlight instead of the dress. This prompted a call to my plastic surgeon's office where I had been about five month prior discussing reconstruction options.

So as a refresher, I had a mastectomy in 2011 and at the same time, I had a tissue expander put in as well as having a reduction on my left side to even things out. Once I was fully expanded, the plan was to have the exchange surgery in January of 2012 and 36 hours before my scheduled surgery, my plastic surgeon called saying there was a mix up/ no OR time / he couldn't reschedule me until May / more prolonged cancer garbage. I decided to go back to work in March of 2012 and in August I decided to change plastic surgeons, to someone who I had met and liked immediately and who I knew did great work. I saw her in November and we too had a plan.

During my November appointment, I came to the realization that as long as I had one reduced breast (that I felt like wasn't even my own anymore) and one (partially) reconstructed breast, I would always have one breast that always had cancer in it. They would never be a pair, a set, or a match.

Over the next few months, Keith and I discussed a prophylactic mastectomy on my left side. We weighed the pros and cons and I came to the conclusion that I wanted to get it done. So I called my 'new' plastic surgeon's office in March, once my Indian travels were over, and at that point, I realized that I had fallen through the cracks again. My file had not been dealt with, faxes hadn't been made, calls had not been dialed, I was in limbo again. After expressing my extreme frustration with waiting five months with no resolve, the ball started rolling again.

As a side note, it is extremely difficult to be an advocate for yourself when it comes to reconstruction - let me tell you why. There is an immense sense of vanity that comes along with wanting to have breasts again. I can't imagine that this vanity exists with many other body parts that are reconstructed but because a breast is so closely related to sexuality, it is so incredibly easy to feel vain when trying to regain a part of your body that cancer stole from you.

So, as the ball was rolling again, my plastic surgeon's office advised me to call my oncology surgeon's office to let her know that I wanted the prophylactic mastectomy (which I would like to point out that I wanted in the first place in 2011). I made the call and was left a voicemail in return within a few days explaining that she was not taking on any new patients for prophylactic mastectomies and that I would have to go through my family doctor to get a referral to a new oncology surgeon to do the prophylactic mastectomy. This was all in a voicemail!!!

I called the office back, said that was unacceptable and that I wasn't going to start all over with a brand new surgeon especially because I am not a new patient and that could take years. And then emotion took over and I said 'I am engaged and I refuse to wear a turtleneck wedding dress at my own wedding. I need to move on and without these surgeries, I won't be able to.' The receptionist felt awful (which was not my intention, I just became so emotional) and said she would speak to my oncology surgeon and would get back to me. Within a few days, she got back to me and let me know that she would do the procedure for me.

So, now we are back on track and I presume that surgery will be hopefully by the end of the year until, oh wait, my expander ruptured on May 24th because really, why wouldn't it?? So, in to the plastic surgeon I go and surgery has just become an ASAP situation. Needless to say, surgery is on Tuesday, in about 36 hours, and I am going through a whole whirlwind of emotions.

Because I have wanted a prophylactic mastectomy for two years now and have been told for all 24 months that it is NOT what I want, I feel relieved that it is finally happening however a few realities have set in. Tonight will be my last Sunday night with a real breast and although it has been reduced and it is not the way it was made originally, it is my own tissue and it is mine. I take some comfort in that. Tomorrow will be my last Monday and my last day with my breast and I know that thought will consume my day. How do you prepare for losing a body part and having it be replaced by something that is known in daily conversation as 'fake'?

The other day someone asked how big I was going to go (kind of personal but I am pretty open about it). I told her that it isn't entirely up to me because we have to make sure the skin and muscle stretch to a certain size, your body shape has an impact as well as other factors. Anyway, this woman seemed surprised that it wasn't just as easy as saying 'Double D, please'. I explained to her that this wasn't a breast augmentation but instead a reconstruction - after she still looked confused and confirmed that confusion by saying 'Oh really?', I said 'picture cutting your hand off, and trying to rebuild it, not easy, right?'. I think that drove the point home.

I often wonder if my breasts will ever be sexual again. I am still in the process of mourning the loss of my first breast, and I will have to mourn my second as well but with the reconstruction will I feel like I just have bumps on my chest that fill the place of the location where my breasts used to be or will they feel like breasts one day? I had breasts for 26 years and so by the time I'm 52, I will have had implants for just as long - will I be used to them by then?

I have been thinking about my first surgery a lot. I think about that scared girl who hugged her mom, dad and mother-in-law before she had to register for her cancer surgery. The hospital was incredible and let Keith come with me as far as almost the OR but I was scared. I was naive and somehow the word 'mastectomy', although knowing it meant the removal of the entire breast, did not have the full impact on me until I saw the flat space on my chest. In the case of my first surgery, ignorance was bliss. This time, I know exactly what I am going in for. I am still a little unsure though, how do I prepare for the physical and mental pain that this will cause having known how painful it was in the past? In the past year or so, I have thought about that scared girl and I have thought about what I would say to her knowing what I know now. Then today, I revert back to that scared girl and I feel no farther ahead. I feel so petrified to go through with this that I have spent most of the day crying.

It's funny because I feel like I have known the right thing to say to so many cancer patients that I have met as a result of my own cancer and I usually feel like I provide some comfort in the things that I say but now that it's my turn, now that I need the pep talk or the right words, I have nothing to say to myself. I am scared, that's all I keep coming up with.

At the pre-op last week, the nurse said, 'Now you've had a mastectomy already?' and once I nodded she said 'because of cancer, correct?'. I nodded again. And then she said generically 'Wow, you're young.' At the time I just nodded, smiled and said my generic 'Yep, and it's not in my family history nor do I have the BRCA gene.' You can tell that I have maybe had this conversation 100 times before. It wasn't until this weekend that I finally thought, you know, maybe a double mastectomy at 28 years old is a little young - ya, I guess it's even a 'Holy shit, she's only 28' kinda young. You just start getting used to it I guess but somehow the word 'double' preceding the word 'mastectomy' takes it up a notch for me.

Somehow I have found strength in the thought that this time, if I want to say 'no' or don't want to go through with the surgery, I can because this one isn't cancer's decision, it's mine. By having a choice this time, I feel a little more in control and that I have a little more power. Knowing that I could just walk away from this calms me down a little and knowing that in order to grow my breasts back, this is the way it has to be done gives me strength.

Even though I have experienced this once before, I just don't know how to get a mastectomy. Luckily, having been born with only two breasts, this is the last time I will have to navigate the experience. The two and a half lines at the start of this entry were about today, in the living room, just Keith and I. I have spent a lot of today crying merely because I don't know how I'm going to go through this again.