Saying Goodbye may seem dramatic, morbid or even sad, but for me it is very relevant to the story I am about to share. From the day I was diagnosed I had to say goodbye to a lot of things. One of those things being my invincible mindset. Yes I’ve always been terrified of the big C, so I was constantly worried before the diagnosis, but I never fully believed that it would actually happen in my lifetime. Especially not at 30 years old. I had my whole life ahead of me and in an instant it was changed in so many ways. I had to say goodbye to looking towards the distant future, thinking about things like what I am going to be doing when I’m 85 years old. Life has no guarantees, and Cancer really brought that into full focus.
To clarify, as some of you may be reading this and thinking “AH! Is her diagnosis so bad she’s not going to live?”, no, I’m not saying that I won’t live until I’m 85, I’m going to fight like hell to make it there, but my main point is that Cancer showed me that living in the present and taking each day one step at a time is a more optimal way for me to live my life. I’ll talk more about my diagnosis in detail coming soon so this will all come full circle. For now, why worry or constantly think about the future? Especially because I won’t be able to control what happens….This is easier said than done but it is part of my process and my journey is teaching me along the way.
Overall to hammer home all my rambling, once Cancer became a reality I looked at life differently and in a way I said goodbye to the person I was before and started new. I have new perspective, new gratefulness and a new found excitement for life. Not to say I did not love life before, but going through something like this proves how short life is and how we can’t take one second for granted. Like I said before, there are no guarantees, living in the moment is SUPER important to me now. This disease isn’t curable, there’s no telling if if will come back or not, I want to make every day count.
This whole experience has changed my mentality, it’s hard not to fall back into old ways and norms because it makes me feel good. I do however give myself constant checks and balances throughout the day and simply just breath in the moment as often as I can.
Though part of the journey of saying goodbye in fact was beneficial, I unfortunately also had to say goodbye to a physical part of me….my breasts. After long conversations with doctors, consulting with those closest to me, and self reflection time to weigh out my pros and cons, I decided to proceed with a bi-lateral mastectomy. This was one of the toughest decisions of my life. It may seem trivial, because of course my life was on the line here, but I was presented different surgical options, which I had to weigh carefully.
For someone who grew up with body shaming issues, and never really appreciating the breasts I had, this was a harsh reality. I had always yearned for bigger breasts, and had compared myself to others constantly, “why can’t I have at least a B cup so I look somewhat like a woman”. You don’t realize how precious something is until you are faced with losing it forever….After my diagnosis I spent many nights taking long showers, starting down at my breasts and crying. My body had failed me, and it meant a sacrifice I never thought I would have to make, and one that I didn’t know would affect me so much. I knew deep down that this was the right choice, but it did not come without debate.
Choosing a breast surgeon was my first step. The way I thought of it was, this is going to be the doctor who saves my life. I wanted to be sure I felt comfortable, confident, and that my life truly was the main priority. I was extremely lucky to find that doctor at Memorial Sloan Kettering in New York City. From the moment I met Dr Andrea Barrio I knew we were a match. It sounds like a weird dating show, and in a way it is similar. In sickness and in health I had to be sure I trusted my breast surgeon to do all the right things for me to fight. It’s a lot of pressure, but she lived up to every expectation.
Within the same week of me seeing her she not only reviewed my diagnosis, she also sent me for an MRI, Mammogram and Genetic testing to determine her recommendation. The fact that she had the sense of urgency I was looking for set my mind at ease. I was like a robot going from test to test, gathering every bit of information I could in order to wrap my head around my next steps.
The MRI showed no other areas of Cancer in either breast, or any apparent lymph node involvement. That was a sigh of relief! The Mammogram also showed the same results as the MRI, another relief. The Genetics test was the most anticipated, because we all wanted to know what the heck caused this. Being my age most Cancer facilities would suggest getting Genetic testing to see if there is a gene mutation involved, which would give a reason for the diagnosis. Two of the more well known Genes of the (7) they tested me for are the BRCA 1 and BRCA 2 Genes. These have been made public by Angelina Jolie when she became a provivor of the disease by proactively getting a double mastectomy due to being gene positive. Being positive for either BRCA gene puts someone at a much higher risk of developing Breast Cancer and Ovarian Cancer in their lifetime. A lot of younger women who are diagnosed with Breast Cancer present this gene.
Meeting with Genetic Counselors would help me determine if I was gene positive, and would be the last result needed to make a choice of which surgery I would go with. I met with the Genetic counselors who asked me a bunch of questions concerning my family, going back as far as we could date them. Any history of any type of disease was noted. By the end of our session the counselors looked through my family tree and said “you don’t have a clear family history of Breast Cancer, or any Cancer for that matter. There is a possibility that you could have a mutated gene that starts with you which we will test for through a blood sample”. They drew blood and they told me it would take about 2 weeks before we got the results back.
Over those two weeks I had a lot of time to think and discuss my different options. If my results came back gene positive there was no debate, I would go through with a bi-lateral mastectomy, but if it came back negative, well, than I had a lot of things to think about.
Since my tumors were small enough I could opt for a Lumpectomy which involved the surgeon going in, removing the tumors, and removing the immediate surrounding tissues until clean margins were achieved (i.e taking out enough tissue until the layers taken were Cancer free). This would mean I could keep my breasts and would need some minor cosmetic reconstruction, given the fact I was small to begin with. The slight unknown for this option would be if I could keep the nipple on my right side or not. It would depend on how far the Cancer cells had spread. One of my tumors was directly below my nipple so there was no way of telling just yet, but it was something to consider. Going with this option would also mean I would need local radiation to the right breast in order to be sure no Cancer cells were left behind. Radiation is given daily, and can cause fatigue, skin and tissue changes to the area being radiated, among other side effects. Another factor to consider.
The more drastic option would be going for a bi-lateral mastectomy, meaning the surgeon would remove all of my breast tissue on both sides as well as the nipples. They would remove both nipples in this case, 1. For the best cosmetic results post op and 2. they could not be sure that no microscopic Cancer cells were left behind in the right breast, and this option would not have radiation associated with it, so they don’t take chances. With a double mastectomy some may be able to spare their nipples, however they would not be functional due to the invasive nature of the surgery. This is due to all of the tissue, and milk ducts being removed, plus the nerve endings are damaged. In summary my bi-lateral mastectomy would leave me with just the skin of my former breasts, and possibly a thin layer of fat underneath, as long as clear margins are achieved. Or as I like to affectionately say…. I would be left with Barbie Boobs. The biggest difference I was focused on was that a bi-lateral mastectomy would decrease my risk of local reoccurrence. Though only by a few percent, I would take any amount to lower that chance.
Those two weeks went by agonizingly slow but when I received a call from the Genetic counselors, it was just as I expected. My genetic results came back negative. I thought to myself “of course, now the decision is harder”….I do not mean this in an insensitive way at all, but when you are facing Cancer at such a young age, with everyone telling you this should not be happening, you go searching for causes just to justify why this occurred. When each test reveals no apparent cause it is frustrating as hell. I may never know why this happened and it leaves me feeling extremely out of control. Of course being gene positive comes with all sorts of downsides as well, but in my mind it would have provided a reason to all of this. Yes I realize that is ignorant – but this is the raw truth of how I felt in that moment.
Now knowing that I had to make this big decision all on my own, my next step was meeting with my plastic surgeon who helped guide me towards my final choice. He noted how he could achieve very good cosmetic results by performing the bi-lateral mastectomy and that my breast surgeon is one of the best at the hospital to achieve this with. The lumpectomy would be fine for me but due to my small size I would be left slightly distorted on one side. Plus radiation would harden the tissue on my right breast and I would never be able to breast feed from that side due to it.
Also weighing into my decision I connected with a few young women who had been diagnosed at a young age. Two of which had opted to go with a lumpectomy. They later found out, about a year after their treatment, that they had a local reoccurrence (Cancer was found again in the breast). Though this was a small focus group and may not add up to the national statistics it was enough to justify my final decision of going through with a bi-lateral mastectomy. I couldn’t imagine going through this again a year from now.
From the moment I told my breast surgeon my decision, she promptly made the appointment a week from that day, knowing how anxious I was to get the Cancer out. There was no going back from there, and so continued my process of saying goodbye….. I felt sound in my choice, but it still wasn’t easy to have a constant physical reminder that you would be losing a part of yourself soon. I couldn’t help but look down at my breasts and think again “you’ve failed me”.
Overall it was an emotional journey leading up to my surgery. I often looked at myself in the bathroom mirror with tears in my eyes and said goodbye to each of my breasts. Yes – I would literally say goodbye to each one, and I felt like it was my strange little way of coping and starting to deal with the reality. I knew I would never again have my nipples. I knew I would never understand the joys of breast feeding, or ever feel that stupid sensation of being cold and knowing you’re showing it through your shirt. That last one may seem silly, but think about how it would feel to never have that sensation again. It’s hard to wrap your head around. But each time I went through these thoughts I would remind myself, this decision is to save my life, and nothing could compare to that.
It was about a month from the time of my initial diagnosis to the day of my operation. Most days were filled with doctors appointments or some type of preparation for the big day. I found it overwhelming both in a good and bad way. I was constantly surrounded by amazingly smart, talented, supportive, and loving people. I will need a whole post to talk about the amount of love and support I received during that month. Even that might not be enough to actually put into words how special it felt.
For now I’ll leave you with this – cherish all the moments you have. No matter how small they may seem. Even feeling that sensation of knowing how cold it is and showing it through your shirt. These all make up this crazy thing we call life, and each moment is special in it’s own way. Even if the moment is bad, there is always something we can pull from it to learn or build strength from. Don’t forget to breath in the moments.
I’m hoping this post gave you even more of a glimpse into my journey, thank you for reading! Coming very soon I will be sharing a blog post about all the details of my surgery day.