This post is going to be a bit of a read so I highly recommend grabbing a snack, getting a drink and taking your potty break now.
This whole journey started about 9 years ago when my eldest sister, Tracy, was diagnosed with Stage 2b breast cancer. She first found her lump when her son was 6 months old and she was breast feeding him. She thought it was a clogged milk duct and tried to rub it out. After a few weeks, when the lump still did not disappear, she went to her doctor with her concerns. But he dismissed them telling her that she was just too young for breast cancer. (Yeah some doctors really are that dumb!) 6 months later, just as her son was turning 1, she went back to the doctor with the same lump. This time he decided to biopsy it. At 32 she was told she had breast cancer. Less then a month later my sister underwent a mastectomy with reconstruction and began her chemo.
I wish I could say it ended there. That after her chemo her cancer never returned and she only had to endure one crummy year. Unfortunately, 9 years had to go by before her battle ended. She metastasized numerous times to her lymph nodes, brain and lungs. During the last 3 years of her fight she began to blog about everything that she was going through. She needed an outlet. A way to get her story out there not just for herself but in hopes that perhaps, she could help other women who found themselves in her situation.
Last February my boyfriend at the time found a lump under my arm while he was tickling me. I immediately called my breast surgeon whom I had been going to for check ups since my sister was first diagnosed. He saw me a week later and sent me for an MRI. The lump was gone and nothing showed on the MRI but I was still incredibly scared. I had heard about and played around with the idea of getting tested for the breast cancer gene mutations (BRCA1 and BRCA2). Since my sister was diagnosed at such a young age and my grandmother and 2 of her sister had breast cancer at a young age my doctor felt it was a good idea to get tested. However he had quite a fight on his hands. This test does not come cheap! But he persevered and one month later I had my blood draw.
At the end of May 2008 I went back to the Genetic Doctor to get my results. I tested positive for the BRCA1 gene mutation. I remember feeling like I just had the wind knocked out of me. I kind of had a feeling I was going to test positive but to hear it said out loud and confirmed was harder then I thought. It felt like I was basically told that I had cancer. My 3 older sisters were tested as well. Tracy came back positive, no surprise there. Liza and Katie came back negative. Even though I was incredibly happy to hear that they were negative I couldn’t help but feel a bit jealous. I had just been told that I had an 87% chance of developing breast cancer before 70 and a 46% chance of ovarian cancer before 70. My options? I could continue w/ my rigorous screening that I had already been doing for the past 8 years. But then every little lump would probably throw me and my family into turmoil. I could consider taking a cancer risk-reducing agent like tomoxifen, continue living a healthy lifestyle or get my breast and ovaries prophylactically removed. I was only 28. This is NOT what I should be thinking about!!
After a ton of research, talking with my loved ones, finding an amazing group of women who understood what I was going through and then wrestling with it in my head I decided to have a prophylactic mastectomy with reconstruction. With the help of my AMAZING breast surgeon I found an equally AMAZING plastic surgeon. These two men made me feel like more then just a patient. They spent many hours with me and my family going over all my options, answering my questions and easing my fears and yes even shedding a few tears with me. I was truly blessed to find these doctors!
I booked my Surgery for Jan 15th, 2009.
On November 19th, 2008 my mom brought Tracy into the ER. She wasn’t feeling well. She was having problems breathing and was incredibly sick to her stomach and tired. It turned out that she had a severe case of pneumonia. 4 days later we were told that she needed to be intubated and we needed to say “good-bye”. I remember going in with my 2 other sisters to talk to her before they intubated her. We told her how much we loved her and that she needed to rest so that her body good fight off the pneumonia. We hugged her, kissed her and said more “I love yous”.
The doctors weren’t very confident she would make it through the night. But Tracy had other plans. My sister, the ultimate fighter, proved them wrong. She did indeed make it through the night. And many nights and days after that. Tracy’s husband, my family and her friends spent many nights and days by her side. She was never left alone. She always had “company”.
On Dec 3rd , 2008 I was headed to have a routine Mammogram done in order to prep myself for surgery. But it turns out my Mammo wasn’t so routine. The doctors found calcifications in my right breast and immediately order a breast biopsy. On Dec 4th I had my biopsy and on Dec 5th my breast surgeon called to tell me that I had breast cancer. I sat on the floor of my kitchen with my phone clenched to my ear staring up at my Dad and my dear friend Faith. When I hung up all I could say to my dad was, “I’m sorry”. I was sorry that I didn’t get the surgery done sooner. I was sorry that I was bringing them more pain. I was sorry because they needed to concentrate on Tracy and now they had to think of me. Of course my father was quick to hug me and told me to stop apologizing. But it meant nothing. I was so sorry to see the pain I was causing. I finally knew what it felt like when my sister, so many times, said she hated knowing how sad her cancer made us. And now I was doing it to my family as well.
My surgery was bumped up to Dec. 15th, 2008. Now, when I tell you I had a posse there for me I mean I had A POSSE!! My parents, sisters and friends took that day to be there for me. As I sat in pre-op waiting all I could think about was Tracy. I wondered if she had the same feeling and thoughts racing through her head before her procedure. I wondered if she sat giving herself a pep-talk. When my Breast and Plastic Surgeon arrived I immediately began to cry. I was crying because I was scared and at the same time relieved that they were there and they were about to do all they could to remove the cancer. Both of my doctors gave me a hug, rubbed my shoulders and patted me on the head and promised to take good care of me. I never felt so safe in my life.
2 days later I was at home recuperating. My mom stayed w/ me for the first week while my father was down in NJ with Tracy. I was healing really well and was looking forward to heading to NJ to visit Tracy, her son and husband. Tracy had woken up from her “coma” on Dec. 22, 2008. She was still a bit groggy and intubated but at least she was awake and the pneumonia was going away. However on Jan 1, 2009, I was rushed to the ER by my sister and dear friend Faith. I was in extreme pain and my left chest was swollen up to my clavicle. It turned out I had a hematoma and 2 days later I was back in the operating room to have the clotted blood cleaned out. A few more days of recovery and I was back home riding the couch.
In January I met with my oncologist, who also happens to be Tracy’s oncologist. I was given the good news that the cancer was not in lymph nodes, and it hadn’t broken through to any of the blood vessels that were near the cancer. However I was told that I was triple negative. This means that my cancer tends to be more aggressive then others that are hormone based. My oncologist told me that he wanted me to go through 5 months of Chemo and one of the drugs I would be receiving, Cytoxin, could very well mess with my ovaries and could cause me to become infertile. So now I was off in search of a doctor who could help me freeze some of my eggs. Again I was blessed to find an incredible doctor who was incredibly honest but positive and hopeful at the same time. 2 week later I began the hormone injection regiment to get me to produce mass quantities of eggs and my Chemo start date was pushed to March.
In February things were not getting better for Tracy. She was still on a vent and fluid was still collecting in her lungs. She was awake and able to smile, tell us she loved us and even used a letter board to “talk” to us but she just wasn’t improving. Her husband Jeff had to make the decision for her to undergo a surgery to look at the lining of her lungs to figure out why she was still producing so much fluid. It turned out that the breast cancer had moved into her lungs and there really wasn’t anything more they could do. Needless to say, Jeff, her son, my parents, sisters and her friends were devastated by this news. It was time to put her on comfort care.
On Feb 20th, 2009 at 5:10am with her husband, son and immediate family around her Tracy slipped away. After 9 long years of battling this unforgiving crappy disease it was time for her to be at peace. No more pain, no more struggling, no more fatigue, no more cancer, just peace.
Jeff did the most amazing job putting together Tracy’s wake and Memorial Service. He had pictures of her everywhere, a video he put together playing and her motorcycle jacket hung for all to see. He did his best to include all of us in the planning process. But in the end it truly was all Jeff and he gave her the most beautiful tribute. She would have been proud.
It’s now just 10 days later. I have already had my eggs harvested and collected. (It was done on the morning of my sister’s wake). 7 happy little eggs for my use, if need be. Today I cut my hair short to prepare for the effect of losing my hair during Chemo and I’ve been trying really hard to drink lots of water and eat as healthy as I can.
Tomorrow is my first Chemo Treatment. I’m scared, I’m nervous, I’m eager and I’m sad. I really wanted Tracy to be there with me tomorrow. Sitting in the infusion chair next to me holding my hand and talking me through it. But I don’t have that luxury anymore. I do have my mom and my other sister Liza who will be there with me holding my hand and for that I am happy.
I know this has been a really long post. I did my best to condense things but I’ve never been very good at that. For now all I know is that my sister has left me some very large Sh*t Kicking Boots to fill. And I hope I make her proud.
Jamie's Journey 