The Journey Continues...

Matt and I put on a smile and went ahead with our Christmas plans as scheduled. We wanted Riley to have a wonderful Christmas and we were so excited to experience it with her. After we opened presents, I cooked Christmas dinner for Matt, Riley, my parents and sister. When Riley left the table after dessert, I lost it. I had been holding my feelings in all day and forcing a smile of denial all the while staring at the large brown paper bag my mother had brought in with the Christmas gifts. Inside the bag were multiple bottles of antibacterial solution, a few boxes of latex gloves (I needed these in order to change my daughter’s diapers) and anything she could think of that I may need in the months to come. People like to do busy things when they can’t fix an actual problem. Although this was appreciated it also overwhelmed me and brought reality to Christmas dinner.

During the holidays it dawned on me that I should get a second opinion. It took a while to reconcile the fact that the lab hadn’t messed up and switched slides with someone else. This was my life, it was happening to me and I had jump into the driver seat. I realized that I needed to pick my medical team, they shouldn’t pick me. So I started researching and calling people for help. My mother and sister also brought up a good point. They both asked “if you were having heart surgery wouldn’t you want a heart surgeon?” Good point…do they have surgeons for breasts? This was a whole new world to me but soon I would feel like I had an honorary degree in Breast Oncology.

My husband and I traveled up to Boston and had a consult at Dana Farber where they told me the same options as the doctors in Connecticut. Choice number one was to receive chemotherapy to shrink the tumor and then hopefully do a lumpectomy. Choice two was to have a mastectomy and then start chemotherapy. Although choice one sounded like a good option because I’d be able to save my breast, it wasn’t. First of all, where my tumor was located (on the top inside of my right breast) a lumpectomy would have left my breast cosmetically undesirable. But the most compelling reason that doing chemo and then surgery didn’t appeal to me was that there was no data to support that chemo during pregnancy would shrink the tumor enough to have a lumpectomy. Many people do not realize how many varieties of this disease there are and that no treatment plan fits all. Every diagnosis is different and being pregnant made my case even more unique. In the end I went with the decision that was in my gut from the minute I was diagnosed and that was take it off and get that F*****’ Cancer out of me!!!

By January 13th I had my incredible team of top notch physicians in place and was very confident in my decisions. I chose to go to Yale-New Haven Breast Center and Yale Cancer Center for my care. It was important for me to be able to talk to my doctors, know that they were hearing me and my concerns and feel comfortable in the decisions we made together. On January 13th 2006 I became cancer free and removed my right breast. My daughter and I made it through the surgery just fine. I was now a uni-boobed, pregnant woman.

After surgery, I had a few weeks before starting chemo. As I healed I remember my mother and I trying to stuff my bra with all sorts of things to make it appear anatomically correct. We failed miserably and it hurt my incision. We decided to road trip it back up to Dana Farber to visit their boutique of wigs and fake boobies. My sister was a nurse at Mass General at the time and we were able to visit with her as well. I remember being in the boutique looking at all of the hats, with a mixture of emotions. On one hand it may be fun to have an excuse to wear different hats and on the other hand I was going to be bald.

I first met with the woman who was fitting me for my fake boob. It amazed me and my mother how heavy these suckers are. So of course because my left one was filling up with milk I had to get the EXTRA large size and come back after the baby was born to be resized. It did feel good to have the prosthesis, not quite natural but as close as I was going to get. It also helped my equilibrium. The first week after my mastectomy, I remember getting out of bed and my whole body would pull to the left! I am serious that is how heavy boobs are and if you aren’t balanced you could be hitting walls!

My next stop was the wig lady. I had started to cut my shoulder length blonde hair to prepare me for baldness and had a cute little haircut but when I looked at all of the choices, I kept gravitating to the long ones with blonde highlights. I wanted to still look like me, or look close to it. I finally settled on a shoulder length one with blonde highlights, but I wasn’t 100% sold on the look. My mom was a great companion and pretty honest but in the end just agreed with what I chose, no matter how ridiculous it looked. This was tough on her. I was her daughter and I had cancer. She was angry and wished, as all good mothers would, that it had been her, not me that had found a lump. I understood these feelings and was just grateful to have her by my side to comfort me. My mother put her life on hold and pretty much moved in with us through this difficult time. My husband and I weren’t used to having another person in the house with us but we all adjusted because it was necessary. My husband and my mother took over most of the caretaking of my little angel Riley who was approaching 2 years old. For this, I owe them the world.

In early February I started chemotherapy. Adriamyacin and Cytoxan were the two drugs that in combination formed a large enough molecule that it couldn’t penetrate the placenta. Since then I have recited this fact many times over and it still boggles me. Okay, when you are pregnant the doctor gives you a list of Don’ts from coffee to salami but I never expected chemo and all of the other pre chemo drugs to be on the DO list. No, no don’t eat that salami sandwich because it has nitrates, but here is an IV of toxic poison to pump through your veins. Medicine truly is amazing!

My first day of chemo went smoothly. Matt came along to hold my hand and I had my tote bag full of activities. I had my magazines, books, a dvd player and my latest Netflix selections, plus my newly loaded iPod. I was ready. Let’s start this.

I had a port placed in my upper left chest when I had my mastectomy and accessing that is one of the worst parts about receiving the chemo. It is at least the most anxiety producing part. The nurse takes a needle and pokes it through your skin with some force into the round disk that is sticking out of your chest. Thank God I had the best nurse on the planet, Karen. Karen used to work in pediatrics so she would come to work wearing Spongebob and other cartoon scrubs and she would also bring her laughter and wonderful sense of humor. I actually looked forward to going to chemo to see Karen.

So now I was off and running, the first thing was pre meds to get you ready for the chemo. Then Karen approached with this big syringe of red Kool-aid looking liquid and pushed that into my IV. This was the adriamyacin. Being pregnant I naturally had to pee a lot and the first time I got it, Karen neglected to tell me that adraimyacin will turn your pee red. This was a bit alarming, to say the least. I also bought into all the little tips everyone gave me and chewed on ice chips while this was entering my system to prevent mouth sores.

That first day I barely looked at any of the activities in my tote bag because I was busy talking to all of the other patients to find out how their chemo affected them. I needed to know everything! Plus I made some friends.

When I went home, seven hours later I was tired and that fatigue got worse. I stayed in bed all the next day but then started to feel better again. An added bonus was that because I was pregnant the white-blood cell boosting shot they normally gave wasn’t approved so for eight days after chemo I had to inject myself with Neupogen. This wasn’t too bad until I got to the sixth day and started to run out of injection spots. I couldn’t reach my own arm, and couldn’t inject my belly so I would do four in one leg and four in the other. This got tiresome but it protected me and kept my immune system strong.

As my second chemo was approaching and this was a tough one because I knew after this one my hair would start to fall out. To prepare, I went on line and bought about 20 different hats. I also wasn’t confident with my choice of wig. The day before, I lost it…I broke down. It wasn’t completely out of vanity but more because now everyone would know I was sick. I had cancer. It was also that now even with clothes on there will be a reminder when I looked in the mirror or caught my reflection in a store window that I had cancer.

My husband was patient and understanding and took me to another wig store and together we picked out a sassy little red bob. It was cute and manageable. It also made the idea of losing my hair okay again because I was prepared.

The second chemo came and went and within days of this appointment my hair started to fall out. I finally had my hairdresser come by and cut my hair as short as she could. It actually physically hurts and it falls out and it hurts emotionally as it comes out in clumps in the shower. As silly as this sounds whenever I showered when I was bald, I always shampooed. It felt strange to take a shower and not shampoo…it was like I was skipping a step. I finally came to the realization that I was not a wig girl or a scarf girl. I was a baseball cap girl. More specifically I was a pink Red Sox baseball cap wearin’ kind of chic and I became comfortable with my perfectly round bald head.

Chemotherapy numbers 3 and 4 came and went pretty uneventfully. I had become increasingly more fatigued and my red blood cell count dipped a bit but I was also seven months pregnant. The little baby girl inside me was a busy one. She was full of kicks and punches but I didn’t mind because it meant she was hanging in there with me. She was my constant companion throughout this leg of the journey and a reminder of why it was important to fight this battle with everything I had.