My name is Michelle and I am a 29 year old, stay at home mother of two little boys. I am also married to the most patient and loving father and husband imaginable. We met while working at a bar in college at the University of Maryland (and the rest is history?). We live a comfortable life right outside of Baltimore City. We enjoy the perks of the county and the city. The boys have a playground within walking distance and I have a Starbucks close by but we also have grass and off street parking, which we enjoy. We used to live downtown and I was a teacher in the trenches, I mean city. Life has really slowed down since I stopped working but we are finally LIVING- not just surviving. It is never boring with a toddler and baby in tow but we always make the best of the silliness. We do almost everything as a family. We love to run around (inside or out :/), go downtown to the aquarium or zoo, cook/bake and cheer for our favorite Maryland sports teams (GO Ravens, Orioles and Terps!!). Every once and a while Dave and I try to make it out sans kiddies to see our friends that still live downtown or to grab a bite at a non kid friendly restaurant. I am also granted the freedom to enjoy Bikram Yoga at least once a week. Some might consider it boring, but we love the life we live.
My BRCA story
I learned that I carry the BRCA2 gene mutation a couple of months after my first son was born. I was 27. When I went to get tested I knew that several family members carried the gene and that because my dad was one of them, I had a 50% chance of also carrying it. I don't really know why, but I just knew the results would come back positive. Even still, when the genetic counselors called me a few weeks later, it felt kind of like a punch in the gut. I was glad I was by myself when I got the news because I had a chance to sort through everything I was feeling. My thoughts ran the gamut from the pathetic, "why me" to reasuring, "this is actually better because I will get screened so often" to very simply, "this won't even change anything in my life until I'm like 40". Eventually all of the crazy internal reasoning stopped and I calmly told my close family. I went on with life and really didn't think about it much for a while. My OB/GYN had already written me the refferals for the baseline testing but I was busy with a new baby, a crazy job in the hood and would soon become pregnant again. It wasn't until after my second son was born that BRCA2 crept back into our lives and we could no longer ignore it.
After I had my second baby I stopped working to stay home with the kids. I knew it was a blessing to be a stay at home mom but I had no idea how HUGE of a gift the extra time would end up being. In October 2012 I began to notice a lump that was extremely small but unlike any other milk duct or bump I had encountered from nursing. Because I was not as busy as I had been while teaching, I was able to keep a close eye on it. I kept thinking it would go away like some of the other afflictions brought on by breast feeding but it just didn't. It was pea sized but felt kind of like a pebble- not a duct. When I called my OB/GYN she wanted to see me right away. She is very familiar with my family history and the BRCA+ gene. Having her find the lump and order an ultrasound made everything seem real. I wasn't the only one who felt it anymore. I still wasn't too concerned but I wanted to know what it was. I called around to a bunch of places and ended up taking the first appointment I could get even though it was far from a renowned breast center. My incredibly small lump was difficult to find on ultrasound and I got the dreaded "wait and watch for six months" analysis from the doctor there. I left that appointment with zero questions answered and a lot of lingering suspicion. Why would someone with a high risk for cancer wait six months? They told me to call if it got bigger or painful? Why would I wait for those things to happen? It didn't make sense to me and I certainly wasn't going to wait it out. My dad had recently had a positive experience with a well-known and highly regarded breast specialist in the area (that's right . . . dad . . . breast cancer . . . that's BRCA). While I had gotten the "run around" from some of the breast specialists I tried to see, mostly due to my age and the review from my first ultrasound, the doctors my dad recommended were so nice and helpful. They made a situation that was uncomfortable and seemed impossible to navigate, doable. I did not see the same doctor that opperated on my dad but I now have a young female doctor that understands my concerns and agrees that there is NO point in waiting for something to be wrong. She did an ultrasound on the suspicious area in her office that day and ordered an MRI for a few weeks later. Because of my age and how recently I had nursed my son, ultrasound and mammography were not recommended for any additional imaging.
I will never forget the afternoon of my breast MRI. Although I am very glad I had it done, it was highly unpleasant. I sat in the waiting room forever. Most of the women there were having annual mammograms done. They would walk up to the counter and be seen immediately. They didn't even need appointments. I was much younger than anyone else in the place and felt like everyone there was giving me the side eye. I was the very last person seen that day. It was pretty much just me and the woman doing the MRI left in the office. I undressed, put on the hospital gown, was injected with contrast and laid down in the machine, face down, chset stuck in two cut outs. Cold. Not comfortable. I was asked what kind of music I wanted to listen to for the next 30-45 minutes. It was the holiday season so I opted for Christmas music. As soon as the clunking and banging of the MRI machine began, "O Holy Night" came on in my head phones. I know its a gross exaggeration but in my brain I was picturing one of those movies when the White House is being blown up by aliens and some kind of beautiful symphony is playing in the background. My arms were over my head (asleep) but if I let my eyes wander in that direction I could see the IV from the contrast fluid tugging the skin on my arm. Bleh. Eventually it was over and I went on my merry way. Now I was left to wait for the results. I got them about two weeks later. It was a Friday and my sister and her fiancee were coming in from Colorado for the weekend to celebrate Christmas. My doctor called me and I could tell that things weren't quite right. She explained that there were several areas that "lit up" on the MRI. She recommended that I have four areas on my left side and one area on my right side biopsied. Huh? How could this be? There was one tiny lump. My mind raced. In a very poor snap decision I asked her to email me the MRI report. I spent the next month (literally) Googling every possible phrase from that report. Eventually, after the new year, I was able to get an appointment for the ultrasound led biposies that I needed. I blocked off the recommended two hours of the day, my husband took off work and we had coverage for the kids. We waited for almost two hours to be seen and then . . . they could find NOTHING on the ultrasound. I would need an MRI led biopsy. What a mind game. Would I have to wait another month for the biopsy and then two weeks for results- assuming they could find the initial enhanced areas? It was the final straw.
I have fought (and continue to fight) with my insurance company over what imaging and doctors appointments were/are "necessary". As if anyone would do any of this for fun. Since October, I have waited for calls back regarding appointment scheduling, results from various imaging and insurance authorization. When I Google any variation of words from my MRI report all of the links for at least six pages are blue because I have obsessively read them all. I have Google Imaged pictures of things that I NEVER thought I would want to look at, much yet do to my own body. I knew when I found out that I carried BRCA2 that I would eventually have decisions to make regarding my body but I didn't know it would happen when I was 29 with two small children. Right now, with the emotional roller coaster of the past few months, I am at peace with the decision to remove both breasts (and reconstruct new ones).