August 4, 2010 Dear Kara, Here’s my story… the title: January 7, 2009, 3:15 pm. This of course is when I became a survivor, when the doctor told me the breast tumor was malignant. It does not describe what lead up to that diagnosis, nor my prior experiences with cancer, or other life experiences. Those prior encounters with cancer include several perspectives. The most significant was my father. He passed from pancreatic carcinoma in 1980 just days before my 20th birthday. Others include my cousin Diane Leon (breast cancer, 2004), my father in-law (pancreatic cancer, 2006), my godson (soft tissue sarcoma, 2008), and Cindy Matteson (breast cancer, survivor since 2005). Three other people should be mentioned as they were significant in how I handled my journey through the world of pink. My husband and I lost our first child to heart disease in 1989 when she was 3. In 2005 we adopted again…a beautiful 16 yr old girl who is currently in college. The 3rd person is my husband himself. He is paraplegic and has been in a wheelchair more than 30 yrs. David was dealing with his own health issues just shortly before, during, and after my diagnosis. Also in 2000 I had my first mammogram. It indicated a need for a follow up but showed no need for anything further, just a yearly mammogram and monthly BSE. There was a month long teacher workshop at MD Anderson Cancer Center in Houston, TX in 1993. At the time only 10 teachers in the state were picked to attend. I was fortunate enough to be chosen. And it truly impacted the way I would have chosen (and did choose) treatment if I was ever diagnosed with cancer. In the fall of 2008 I went for my yearly physical which I had not missed for many years except for my mammogram. I still did BSE and doctor checks, but it had been 2.5 yrs since my last mammogram. There were many reasons why but in the end none seem to matter. So after more than a year back in Texas I knew I could not procrastinate any longer. We had settled in our new home and I thought this would be a routine checkup. However, the mammogram warranted a follow up. I was still not worried because my first was called back. I should mention that I postponed this mammogram appointment for about 3 weeks as I had just started working as a long term substitute teacher. I went in for the follow up over the Christmas break and they immediately wanted to do an ultrasound. That’s when I knew! To make a long story a bit shorter my ob/gyn, who I credit with being very vigilant throughout the process, got me an appointment with a general surgeon within a few days. Still hoping this would be nothing and wanting to keep another long term sub job I had taken, we decided on a core needle biopsy. And of course I got the results of that biopsy on January 7, 2009, at 3:15 pm. I was teaching about haploid and diploid cells at a nearby high school (not a coincidence in my opinion). Time and place is something a woman diagnosed with breast cancer never forgets. And again, I consider it the moment I became a survivor! What followed over the next year and a half were numerous doctor visits, 4 surgeries, and tattoos. I was a prime candidate for a lumpectomy followed by radiation and/or chemo, but I had decided all those years ago when I was at the MD Anderson teacher workshop that I would do as much as I was allowed to get rid of the cancer and for breast cancer that meant a mastectomy. If I could eliminate anything it would be chemo and/or radiation. The only real decision I had to make was whether to have both breasts removed or just one. For several reasons I opted for a bilateral mastectomy with immediate reconstruction using Alloderm; simple on the left side and modified radical on the cancerous right side. The surgery took place on February 3rd, 2009. In addition this day quickly became a Passionately Pink Party and no one, surgeons included, could be near me without pink. I had Komen stickers to pass out which my surgeons still proudly wear on their ID badges. Revisions on both breast followed in late March and early September with nipple reconstruction in July. Tattooing was in December of 2009. In late February of 2009 I was declared cancer free. My cancer was IDC stage 1 with a 1.9 cm tumor. It was ER & PR positive. My lymph nodes were negative and margins were clear. This fit the parameters for insurance to pay for the OncoDx test to determine need for chemotherapy. My score was low and therefore I need only take Tamoxifen for 5 years. I had my last surgical follow up with my plastic surgeon in April 2010 and in July 2010 my oncologist put me on checkups every 6 months. Thank you Lord! The biggest challenge during this time was my husband’s own health. He himself had 3 surgeries in 2009 for pressure wounds due to being a diabetic paraplegic and had been confined to bed for the better part of 2008, 2009, and the beginning of 2010. Since I was his caregiver we had to have my mother come and stay with us on two separate occasion just so I could recover from surgeries. Not a conscious choice at the time, but I really put most of the emotional bits of dealing with breast cancer on the back burner. Other challenges or situations I had to “get over” include a radiologist who in my opinion lied about what she saw on the ultrasound. The other was changing oncologists. I was not happy with one’s triage nurse and when I explained things to the doctor she “sat on the fence”. I did not need that for the next 5 years. So I found another oncologist. Just as there were challenges there were also helpful people and things during this time. Simply put prayers…my own and those of family and friends were my saving grace and strength. Next is my friend and neighbor Cindy Matteson. At that time our street was under new construction and there were only 9 homes completed. So how is it when the breast cancer statistics say 1 in 8 that I find myself living on a street where the stats were 2 in 9? A blessing from God for sure…you see Cindy was a 3 year survivor at the time of my diagnosis. She came to doctor visits, was there for the surgery, checked up on me, helped with yard work, and answered any questions I had. Next came finding good surgeons and mine were truly another blessing. For me none were better than Dr. Tuchsen (mastectomy) and Dr. Person (reconstruction). They are well respected by their peers and others who know them. They respected my decisions regarding surgical treatment and listened when I had questions and concerns. And most importantly were willing to pray with me before surgeries. Last, my family and friends blessed me with support beyond compare especially my husband who probably should not have been at any of my surgeries but was there for 3 of the 4. And my Mom who gave up her home in Indiana to come stay with us for a total of about 3 months…she basically ran our home for us, fed us like there was no tomorrow, and getting my hair washed when I needed help gave me such peace even if just for a few minutes! Things that were helpful include a t-shirt with the arms torn off. That, along with a bum pack (Australian for fanny pack) to wear around my waist to carry the drain tubes, made one of the less pleasant parts a bit easier. The no fuss no frills green pillow from the American Cancer Society felt so good under my arm where the axillary nodes had been removed. I started again on a weight loss program and this time am making it…lost over 53 lbs since diagnosis with about 22 more to go. Walking also helps me keep fit, healthy, and have a positive outlook. In the last bit of my story I want to address humor. It was and is oh so important. I have already mentioned that my doctors would prayer with me before each surgery. But I believe there has to be balance so I started thinking of the humorous things that have happened during this journey. The ones that come to mind involve my surgeons. At one of my post surgery checkups with my plastic surgeon he saw and commented on my bum pack that I was using for the drain tubes. He actually called it my “marsupial pouch”. I told him it’s funny you should say that because it actually came from Australia from the time when we lived there and is made from kangaroo leather. He grinned. Another post surgery check up, this time with my general surgeon had him looking for information on support groups. In going through his pamphlets he came across one on surgical options for those diagnosed with breast cancer. His comment was, “Guess we don’t need that one anymore.” The next ha-ha moment occurred as my plastic surgeon was marking on me for my 4th surgery, prior to that day I had been joking with family about getting the doc some help. So I got together a goody bag for Dr. Person. It included a spool of heavy duty pink thread, super glue, pink duct tape, and a staple gun. As I said when doc was marking me for surgery I asked him if he wanted serious or humorous first. He said humorous so I gave him the bag. His smile grew as he pulled each item out of the bag. And then without missing a beat he turned to the OR nurse and told her to have them sterilized for surgery. On my last visit I brought him some Velcro to add to that bag. This last humorous story regards the nickname we have for the doctor who did my nipple tattooing. My plastic surgeon was not set up to do this so we had to find someone else. Turns out my husband’s plastic surgeon did offer this service. The humor comes from our nickname for him. My husband had flap surgery on his “backside” for pressure wounds. So after the doc did my nipple tattooing we nicknamed him our T & A doctor. He said he has had husband and wife patients before but none with our particular combination of needs. This summer has been about dealing with those emotional bits that were put on the back burner. So it is with deepest gratitude and peace of mind that I say thank you for asking me to tell my survivor story. Sincerely, Carmella Russell