It all started with 3 little words…

It’s an ongoing joke to those who know me, but I truly have the worst luck. Wednesday, September 23rd, 2009… it was my 3rd wedding anniversary.  I went for my annual GYN check-up and the Physician’s Assistant, who I preferred to see, casually said that I had a lump.  She mentioned that it was probably just a cyst, but that I should still have it looked at.  At the time, I was also dealing with Bell’s Palsy, so our conversation was more about that than the lump.  I left the office and on the way home, I started to worry.  I knew me…and my bad luck.

I drove home and found my husband Stephen getting ready for our anniversary dinner.  I told him the news and then called Borg & Ide to make an appointment for a mammogram.  They were able to fit me in late that Friday, two days later.  Life, it’s not always very convenient.  My cousin Jenny was getting married on Friday night, and I would surely miss her wedding ceremony.  My daughter and I had helped her pick out her gown and it made me very sad that I wouldn’t be able to see her walk down the aisle in it.  Stephen and I sat very quietly at dinner that night.  Neither of us knowing what to say, consumed with all the what ifs.  The only conversation I recall is the one that I said, if it was cancer, I was having a bilateral mastectomy.  I had a five year old daughter and I was going to be aggressive.

Two days later, I went for my mammogram. An ultrasound was also ordered.  It was the ultrasound that determined that my lump was definitely a tumor, not a cyst.  I remember being so grossed out by my ultrasound tech.  Her personality.  Her smell.  The way her armpit was way too close to my face.  But maybe I was grossed out at the fact that I was 34 and looking at a cancer diagnosis.  A diagnosis that I had never personally seen someone live after receiving.  Linda, Gail, Marcia.  That night, I went to my cousin’s wedding reception.  I shouldn’t have gone.

That following Monday, I went back to Borg & Ide for a biopsy. I went into the procedure room alone.  I laid there having my breasts jabbed, staring at a picture of a woman holding a little girl’s hand.  It was then, that I had my first cry.  I laid there imaging missing my daughter grow-up, and it devastated me.  Two days later, while grading tests, sitting in a classroom with one student, I received the call that immediately changed my future.  I had cancer.  All professionalism went out the window as tears rushed down my face.  I walked back to my desk and emailed all the important people in my life.  I had cancer and I would talk to them when I was ready.  Thinking back, that was pretty horrible of me to do.

In the end, my official diagnosis was stage 2B, triple positive breast cancer. The cancer had not reached my lymph nodes.  My general surgeon said that the way my tumor grew, that I was incredibly lucky that my PA made the call and had me examined, because based on the mammogram alone, she would have said that I did not have cancer.

I had the bilateral mastectomy and opted for full reconstruction with implants. After my mastectomy, I went to Pluta Cancer Center to meet with an Oncologist.  I was told that I had 15 months of chemotherapy infusions ahead of me, then 5 years of Tamoxifen.  I’ll spare you all the details involved with my infusions, but I will say that cancer became my horrible part-time job.  My mother-in-law, husband and daughter did all they could to make life easier for me.  For that, I am grateful.

There’s so much that I could tell you about… the side effects of chemotherapy and Tamoxifen, the loss of friendships, the depression… but in the end, I am here. I am alive to tell my story and to help women who have been newly diagnosed.  So here’s all the good… Treatment is now better than it was just 7 years ago.  Physicians are providing better pain management and medications for nausea.  More importantly, going through all this finally gave me a little purpose in life.  I started Fight Club of Rochester to raise money for organizations that help people living with cancer, because cancer is freaking hard.  And it sucks.  And if I can help even just a little bit, I want to do that.

I try to never give advice, because everyone handles diagnosis and treatment differently, but here’s a pearl of wisdom from me to you… When you start losing your hair from treatment, don’t try to make it a fun experience by having your 6 year old child shave your head. It will probably go over as well as a screen door on a submarine.

Jen’s Story

I walked into Sears and bought a pair of shoes. They were a brown plaid, not my normal style, but I chose them. I certainly did not choose to have breast cancer as that phone call had just confirmed. I had been waiting for hours to get that call. I was nervously eating my chicken fingers at Friendly’s with my best friend Erin when my phone rang. Only she and my sister-in-law Barb knew that I had gone for a mammogram for a lump on the inside of my left breast. I kept noticing it when I showered, but I am fibrocystic so I was not that concerned. Until it did not go away. It had been there a while, probably at least a month. My sister, Barb, and I had scheduled mammograms for that November when I would turn 35. We would make a day of it, get the girls squeezed, then go to lunch. It was September and I asked Barb, who worked at Elizabeth Wende breast clinic how I could come in sooner. She told me to get a referral from my doctor. So I called my gynecologist for the referral. It had been a couple of days with no word from him, so I contacted my primary care doctor. Within hours I had the approval. Then Barb got me an appointment a few days later. I was concerned, but not very. I was only 34 years old. Wasn’t cancer a disease for old people?? So when the doctor finally called with my results, tears started falling down my face. Erin quickly got our food boxed up. The doctor was telling me how I needed to find a general surgeon to discuss my treatment. She listed off names as my mind thought of my children, just 2 and 6 at the time. I had recently divorced and they lived with me full time. How could I leave them without a mother? 

Then my phone rang again after I bought those shoes. It was my older sister, Kirstin,  asking me what was up. Her husband had overhead my brother talking to Barb. Well apparently I have cancer I told her and I started bawling. She came to my house and took charge. Coming up with names of surgeons. We finally got an appointment with the best in Rochester, Dr. Caldwell. I remember him telling me this treatment would take a year of my life. He recommended I begin with chemotherapy as my tumor was large, 4 centimeters, and would leave a large defect if I chose a lumpectomy. So I was determined that I would do that after chemo and save my breasts. He recommended that I go to Pluta Cancer Center to receive chemotherapy treatment. There I met Dr. Krebs. She was very sweet and personable. I first needed to get a port installed, this would be connected underneath my skin to a main artery, in order for them to deliver chemo without ruining my veins. That surgery took forever as the doctor kept having emergency surgeries that delayed mine. I began chemo at the end of October. The nurse that day was named Barbie. I now had a plan as how I could beat this cancer and I let everyone know. I also had a team of family and friends by my side. Kirstin, Erin, Barb, and my second mother Phyllis took turns taking me to chemo appointments. Every time I had chemo I would tell all my Facebook friends in a clever way. One time I opened a can of whoop ass, another I was pretend boxing, there was no way I was losing this fight. Pluta was a great place for treatment. The nurses were fun, throwing smart remarks across the room at each other. Each patient had a comfy recliner, a tv, a massage therapist gave foot rubs, a snack bar, and they even had a lunch cart go around. I sailed through my four treatments of ac. It mostly made me tired, but I still went to work at my office job, although I quit waitressing. The four taxol treatments were tougher causing much aching to my bones. Also I had a weird itching sensation that occurred on the back my legs when I was sitting. I only got sick once through all of my chemo. My kids had a stomach virus that they passed on to me. I had only seen the horror of chemo as shown in the movies. Thankfully, my experience was nothing like that. 

The worst side effect was losing my hair. My Aunt Cindy was a hairdresser and told me it would happen 2 weeks after my first treatment. As time passed and everyday more hair was on my pillow then my head. It would come out in clumps when I would comb my fingers through my head. So I finally called her to come shave my head. A few days before I had some professional pictures taken with my kids. They are still some of my favorite family photos. My aunt had gotten me a wig. Yet it was uncomfortable and didn’t look like me. So I went with hats instead as it was November and cold. Encouraged by my aunt I attended a program called Look Good Feel Better put on by the American Cancer Society    It was there in my maroon knit hat another young woman sat next to me that also had breast cancer. We were taught how to apply makeup, wigs, and scarves to still feel beautiful during treatment. As we walked to the wig room I heard this woman mention a small salon in Pittsford where she bought her wig. I asked if it was Reflections Unlimited which was my aunts salon. Indeed it was, my aunt had actually told me about this young woman named Kelly. We spoke a bit as we tried on wigs, we were the same age 35. 

I spent a lot of time on Facebook as I received so much encouragement from my friends near and far. I was searching through people I might know from my college Suny Oswego when I came across Kelly’s profile. So I messaged her to see if she wanted to get together. At dinner we were both bald now and it was great to have someone to talk to about this venture that knew exactly what I was going through. I had begun going to the Breast Cancer Coalition of Rochester for support also, but most survivors were post treatment and much older than me. 

I finished chemo in January 2010 and anxiously awaited a date for my double mastectomy. I had decided not to save my “real” breasts as they had done me no favors, except feeding my children. Also even though chemo was not that bad for me I would never want to go through that again. My surgery was scheduled for March 19, 2010. I would be having a double mastectomy with tram flap reconstruction. I chose this since I had two nine pound babies by c-section and had a nice muffin top I could spare. Also I was not too keen on having an implant in my body as there had been many issues with them in the past. This route would also put me in surgery only once, albeit for almost four hours. My second set of parents, Phyl and Ed, drove me to surgery that morning. The last thing I remember was my plastic surgeon, Dr. Vega, drawing on me with Sharpie and saying that my muffin top would give me a smaller set of breasts than before. Then they gave me some sleepy meds and rolled me down a hallway. I woke up and asked my sister if she’d seen the truck that ran me over. I remained in the hospital for five days. It was a very painful procedure having the tummy tuck to get the tissue for the tram flap. The night I went home I had to ask my fiancée to move out as he had relapsed with prescription pain pills. My brother spent the night at my house with me and my kids. My best friend, Erin moved in with us as I could barely do anything. I couldn’t even lift my 2 year old daughter up. I spent almost a month sleeping on my couch propped on all kinds of pillows. I was off work for 9 weeks. My family and friends took awesome care of my kids and me. I couldn’t have asked for a better support system. The final step in my journey was about a year of physical therapy to get rid of lymph fluid buildup and help stretch out my stomach a bit. Every year for 5 years post surgery I had a cat scan and bone scan to check for any tumors. I came through them all with flying colors. My oncologist offered to see me once a year still or when I needed her. I said I’d call if I needed her. The only thing I still use is a compression sleeve for my left arm sometimes, since I had 24 lymph nodes removed. When people question me about it I am glad to share that I am a survivor. September 21st is my cancerversary, the day I was diagnosed. The day my life changed forever, the day I bought those plaid shoes. I actually returned them, like I said they weren’t my style. 

Trina’s Story

I was 41 when I was diagnosed with breast cancer. The official diagnosis was grade 2 invasive ductal carcinoma. The tumor was 1.3 cm. I hit the bricks right away finding a surgeon, plastic surgeon and oncologist. Meeting the surgeon was the priority so I could learn about my different treatment options. I also had genetic testing done because of my age. I have a BRCA2 mutation of uncertain significance. That meant there wasn’t enough data on that mutation to determine if it was the cause of the cancer. Regardless, it was there and that was all I needed to know. I didn’t need to put much thought into how I wanted to proceed once I knew what my choices were. Double mastectomy with reconstruction. I wanted it all gone and I wanted to reduce my risk of recurrence as much as possible. I waited over a month from my diagnosis before my surgery, and that felt like a lifetime. The double mastectomy went as planned and I was fortunate that it hadn’t spread to my lymph nodes yet but still had to wait a few more weeks for the oncotype test to determine if I was going to need chemotherapy. My oncotype score was low so I didn’t need it. In the interim, I started with the tissue expander fills and after more than 3 months I had surgery to remove the expanders and put in the implants. Around the same time, I started taking Tamoxifen, with a 10-year plan that wouldbe reassessed after 5 years

Having the BRCA2 mutation also meant a higher risk for ovarian cancer, melanoma, pancreatic and kidney cancer across my lifetime. Plus, being on Tamoxifen increased my risk for uterine cancer. So, I made the decision to have a full hysterectomy as well to further reduce risks.

I think it goes without saying that not only was this a shock to me, but also to my family and friends. There was a lot of love surrounding me though and it definitely brought me closer to many people. It also brought new and cherished friends and it brought me a renewed outlook on life and how I want to live it. It’s almost 3 years since I was diagnosed and my life certainly has changed because of it. And I believe it has changed for the better. I am not grateful that I had cancer but I am grateful for all that it taught me about myself and those around me.