Shock and Disbelief
I was 36 years old when we moved from Ohio to Texas. Our plan was to give our only son (then 4years old) a better education and far more opportunities as an adult. I was born and raised in Ohio so moving somewhere with so much traffic and so many people were overwhelming to me. Our move was final in August of 2010. Please forgive me, I don’t remember dates during my diagnosis and will do the best I can.
My first job after getting us settled was finding a good pediatrician, an OB and a family practice doctor. I met with my Ob in Feb for an annual exam and to go over my family’s history. I lost my grandma, my great aunt, my great grandma all to breast cancer and my aunt is a breast cancer survivor herself. I can remember that appointment like it was yesterday. The doctor looked at me and asked, “Have you had a baseline mammogram?” My reply to him was, “No, insurance won’t cover mammograms in Ohio if you’re under 40.” He was shocked and in disbelief especially with my family history. He handed me an order for my very first mammogram. I was 36 years old. He suggested I get a baseline done by the end of the year so we had something to compare it to the following year. I remember him saying wait until you’ve met your deductible then you can make the appointment. I walked in the house after my appointment and shoved that order in a drawer. I knew once I had that test done my life was going to change. I forced myself to forget about it. We met our deductible in September. I remember where the order was so I pulled it out and made the appointment to go. My mammogram was scheduled around Thanksgiving.
Mammogram Time
I signed in along with everyone else and took a seat. I looked around the waiting room and noticed I was the youngest girl there. I was terrified and kept repeating to myself, “Now it’s your turn.” She called me back to take my insurance information and I could barely get through that without crying. My thoughts were focused on all the women in my family that we had lost to this disease and wondered if I was going to be next. We didn’t have family here so I went alone. We were still so new I didn’t know anyone either. I would have given anything to have my mom by my side. The tech called me back…..my turn. She showed me where to change and gave me a nice, warm, fluffy robe and told me to have a seat and she would be back to take the pictures. I cried the whole time. The machine was intimidating but after she was done I couldn’t believe it didn’t hurt like so many said it would. The pictures took less than 5-10 min. to take. As the tech walked me out, she told me 3D images pick up everything and don’t get worried or scared if I get a call back stating they need another picture. It was in that moment I knew I would be called back. A week later I received the call that they needed more in depth pictures whatever that meant. I was back along with all those feelings of fear. She took more pictures with the machine and then performed an ultrasound of the L breast. As she was performing the ultrasound and taking pictures she excused herself. The radiologist came back in the room with her about 15min. later. He took a look at the pictures she had taken, looked for himself and told me I had some calcifications that were abnormal. He asked if I was an anxious person or was I one that could relax and have it repeated in 6months. I explained to him my anxiety disorder and our family history. I insisted on a biopsy. The biopsy was completed in the beginning of December. My results were back within a day or so.
The Day Time Stood Still
I remember finishing up some last minute Christmas gifts at the mall when I got the call. It was mid-morning so the mall wasn’t crowded. We were planning on going to Florida for Christmas that year to spend with my parents and family. Our son was so excited! I was on my way out of the mall when the phone rang. My Ob was calling. I ran back into the middle of the mall where it was quiet. He was calling to inform me that the cells from the biopsy were cancerous and he was waiting on a call from the oncologist and breast surgeon. My diagnosis was DCIS Grade 0 of the left breast. Ductal carcinoma in situ. “In situ” means “in place.” My abnormal cells had not left the milk duct so it hadn’t invaded nearby breast tissue. My only question I could muster to him was, “Can I still go to Florida for Christmas?” He replied, “Yes but first see the oncologist.” I hung up and was numb. I was alone, shaking; I didn’t know where to start. I simply shut down. I froze and parts of me are still there in that mall. I couldn’t tell you how long I stood there in disbelief. I remember running to my car sobbing out loud wishing to be anywhere but here in Texas.
Meeting my Oncologist
My first appointment was going over family history and develop a plan of action. She decided on a lumpectomy along with 6 weeks of radiation every day and then 5 years of a drug called Tamoxifen. I was scheduled for a lumpectomy in January as soon as we came back from Christmas break. After the lumpectomy I had to wait 6 weeks to start the radiation because they need the area to heal. She mentioned at my follow up appointment
that I would be a good candidate for the BRAC1/2 gene testing. She said it took about six weeks to obtain the results and if it did come back positive I would need more invasive surgery. I remember her telling me she very highly doubted it would come back positive. She saw me back in the office at six weeks and told me I was ready to go for radiation. I was marked the day before my follow up with the pretty purple lines all over my chest. The office didn’t have my gene testing back yet. The plan was to go in for radiation the following morning. I honestly can’t tell you how I got there that morning or the little things people remember. I know I took myself again. My
hubby was working. Honestly it wasn’t that bad physically. My skin started to peel that night and became very red. Emotionally I sobbed lying on that table as the two women behind the glass gave me the radiation. I felt as though pieces of me were being left behind through this journey I was on.
More Results
My husband had to stay home with our son that morning. He was home from school with strep. The oncologist didn’t think I would come back + so I went alone. She sat down beside me in the office and said, “Yes you do carry the BRAC2 gene and your son has a 50/50 chance of carrying it also.” She told me the cancer would be back if I didn’t do what she was about to suggest. She looked me straight in the eye and told me I had to undergo a double mastectomy, a complete hysterectomy and reconstruction surgery. Wait………What did you just say? I have to do what? I hadn’t even begun to grieve the move. Can someone let me know when its ok to breathe? I was hysterical. She sent the nurse in with something to calm me down and called my husband to let him know I would need to be picked up.
The Surgery
I had the most wonderful team of doctors here in Texas. I do believe that’s why we’re here. I opted to have it all done at once never knowing the price I would pay for that decision three weeks later. The nurse wheeled me into the operating room and instruments lined every single wall. I looked at the anesthesiologist and told him to hurry up and put me under because I was about to have a panic attack. My mom flew from Florida to stay with us for the next six weeks to help out and take our son to school. I had a DIEP flap performed. The plastic surgeon took the little belly fat I did have and made two breasts with my tissue. My husband and I tried so long to give our son a brother or sister. It was no longer my choice to stop “trying” everything was so final. The decision was made for me. Everything was out. I had a 14 hour surgery, 3 days in ICU and was then discharged home. I have a background in nursing and understand how important it is to get up and move after surgery. I do wish my story ended there but after being active, walking around the house everyday my body threw a clot and it landed in my
lung the size of a golf ball. Back to the ER I went. I had to give myself injectable blood thinners for a full year in a belly that had no stretch or give at all. I had no fat there and it was so tight due to the DIEP flap. My cancer responds to estrogen so my 37 year old body cannot have any HRT’s or soy, OTC herbs to help with the hot flashes, mood swings etc. My body is in menopause and already I have a bone density test of a 60yr old.
Breast Cancer Survivor
I don’t care for being referred to as a breast cancer survivor, an inspiration or telling me how strong I am. I believe any woman would have done the same in my situation. My image of a survivor is someone who has won a battle. Someone who can celebrate their victory and put the ordeal behind them. For me, survivor doesn’t define what being stricken with breast cancer is about. To me, more appropriate labels include unlucky, casualty, prey & underdog. When I traveled downtown with my husband, mom and best girlfriends by my side for the Susan G. Komen Race for the Cure I was surprised how strongly I was repelled by the label of survivor being thrust upon me. I didn’t want to put on the pink survivor t-shirt. I didn’t want to be part of that group. I was not proud to be part of that group. I found myself disliking everything pink including the ribbon and the whole month of October. I was there to walk with my husband, my mom and to visit with the best friends I could of asked for, who had supported me with such unselfishness and kindness. When it came time to join the other survivors across the finish line I had no idea there was a lane for “survivors only.” I watched the women in front of me shout into the DJ’S microphone how many years they had been cancer free. I remember feeling confused and unsure about how long I had been cancer free as it was my turn next. The DJ looked at me very puzzled. There I was walking the finish line all by myself (again) just crying and telling her I wasn’t sure how long it had been. I felt so embarrassed that I didn’t know the most important date. I sobbed the whole way down that finish line looking for a friend or a familiar face because I needed a hug. I still don’t remember the date to this day. My very best friend Amanda was waiting for me at the finish line. I grabbed onto her and gave her the biggest hug. I have snap shots of that day and a reminder of where I’ve been every time I look down at myself.
It has been said, there is something beautiful about all scars, whatever nature. A scar means the hurt is over, the wound is closed and healed, done with. Carrying the BRCA2 gene, getting checked every three months and the thought that I could be responsible for passing this gene onto our one and only son is a fear I carry daily. My mind needs to catch up with my scars that are now healed. I have attended many support groups for breast cancer. As I sat with the women in the rooms, I never felt a sense of connection or belonging. I believe this is where the survivor’s guilt comes in. My mind tells me I had it easy, I never suffered with chemo, lost my hair or was so weak I couldn’t get out of bed. Therefore, I am not as deserving of being known as a “survivor.” I survived a 14 hour surgery. I am so grateful to the doctors who saved my life. My cancer was detected so early thanks to that baseline mammogram! I want to be a voice for those of us who are stuck and rattled with guilt, fear and anxiety. Surviving breast cancer isn’t all rainbows and butterflies. Cancer for me has left a destructive path in the way I view myself. I believe cancer patients, survivors and doctors need to talk more about the psychological impact it may have on a patient’s life. We need support groups for the men and women who are struggling in silence, ashamed of the tears that fall and the feelings of guilt when it isn’t all “pink ribbons.” I am working on finding myself post cancer. We can fight to survive cancer. Either treatment works or it doesn’t. We are either lucky or we’re not. It’s quite simple; we take the treatment and endure. We try to stay positive. Not because we really believe that a good attitude increases our chances of surviving, but because it is easier to cope that way.
I cannot stress enough the importance of having a mammogram. We are so fortunate these days to have a machine that can pick up calcifications in 3D. My mammogram saved my life. My mammogram caught it so early I didn’t have to suffer. Cancer has taught me many things about life and what is truly important. I no longer “Sweat the small stuff”; I have a place to rest my head at night, a roof over my head and food in the fridge. My family is healthy and I do my best to stay in the moment. Our time here is so brief I no longer take things for granted. My view of the world and how we treat one another has changed. I wish everyone could see life through my eyes. We would all be a bit more empathetic, compassionate, we would slow down and spend quality time with those we love the most. Knowledge is power. Be your own best advocate; make sure you continue to have mammograms or breast ultrasounds. Early detection saves lives!! Every single one of us has been affected by this disease one way or another. All you have to do is get a mammogram it’s that simple. Scary, yes, but if I can do it anybody can.
Sincerely,
Kristen