I’ve never been one to gamble, although one could say that every time I get in a car I’m gambling with my life! I suppose the same could be said for flying or even crossing the street. Given the rise of unexpected violence around the country I could even lose my life shopping in a mall or being in some other public place. In spite of those risks I don’t sit at home or worry each time I leave the house and even though it’s tempting at times, I don’t buy lottery tickets. That gigantic powerball or megabucks number is enticing but as my husband likes to say, “each time you don’t play, you’re a dollar winner!!”
Seeing another spring reminds me I’ve already won a lottery of sorts. I was blissfully unaware that my breast pain, itching, and increasing size (of just one breast) were symptoms of inflammatory breast cancer. I learned the basics about breast cancer in nursing school and thought I had a pretty good understanding of women’s health issues. I had regular check ups that included a PAP smear and clinical breast exam. I’d had one mammogram at age 37 when a local OB/GYN office added mammography screening with their new equipment. I hadn’t felt any lumps but took advantage of the discount.
As I got out of the shower one morning and hurried to get ready for work, my husband said, “your breast looks sick.” I admitted I’d been having sharp, shooting pains as well as itching and you could see the breast was enlarged. He questioned why I hadn’t been to the doctor and I gave some lame excuse and promised to make an appointment, which I did. A few days later I saw our family physician and received a thorough exam. He didn’t feel any lumps and didn’t think it was anything serious but sent me for a mammogram.
The mammogram was uncomfortable and I was a bit surprised when the tech told me “It’s fine, you can go.” When I asked if she’d told the radiologist what my breast looked like she said she had. She could see I was not happy so offered to get the radiologist. I suggested he look at my breast because it was swollen and painful. He smugly replied, “I told you the mammogram is fine, you’re a hypochondriac nurse…go home and stop whining!” I was shocked but went back to work and tried to dismiss it from my mind, but that was easier said than done.
Over the course of the next few months the breast got larger and more painful, even though I’d tried to eliminate caffeine from my diet and was wearing new, supportive bras. During the next months I celebrated my 41st birthday and we welcomed our first grandchild but I worried that my symptoms weren’t going away. In fact, things were getting worse. To make matters worse, I had a return of gallbladder attacks and wondered if the two were connected. After a couple attempts to see our family doctor I finally got an appointment. He was confused that the breast symptoms hadn’t resolved and decided to send me to a surgeon for both issues.
Just two days later I was in the surgeon’s office. He calmly examined the breast and underarm then suggested a needle aspiration where he felt some thickness in the breast. It was unsuccessful so a biopsy to remove some skin and deeper tissue was done. He also scheduled a gallbladder ultrasound for the next day. I went back to work with an icepack in my bra at the biopsy site, wondering how I’d fit gallbladder surgery into my busy schedule.
It seemed the ultrasound took a long time the next day. Afterward I was sent to a conference room to wait for the surgeon. I was looking at my work calendar trying to figure out how I’d squeeze in a surgery with my heavy client load at the mental health clinic where I was the outpatient nurse. When the surgeon came in I could tell by his expression something wasn’t right. He sat down and took my hand….I asked when we would be doing my gallbladder surgery and he resplied, “I hope to get to that sometime but you have a very serious, aggressive form of breast cancer called inflammatory breast cancer. On a scale of 1-10 this isn’t what you want.” I said, “I didn’t know I wanted any” and chuckled. The surgeon didn’t smile, just went on to say I needed to start chemotherapy immediately and he’d already spoken to the oncologist who was waiting to meet with me. we went through a maze of stairs and arrived in the oncology clinic.
Still in a bit of a daze I met with the oncologist and heard him say I needed to start chemotherapy immediately and wouldn’t be able to drive home. I hadn’t expected a cancer diagnosis, so I’d gone to the appointment alone. I couldn’t call my unsuspecting husband and say “come get me I’ve just had chemotherapy.” It was Friday and already lunchtime, I needed to adjust to this news, arrange things at work, and tell my family the diagnosis. After asking some questions and pushing for statistics (bad idea), I went back to work with some paperwork and an appointment to start chemo on Monday afternoon.
Rather than recount the gory details of treatment suffice it to say I spent the next 7 months receiving grueling chemotherapy (it was a new idea to give chemo first back then), followed by a radical mastectomy then 7 weeks of daily radiation. I did have the gallbladder surgery 3 weeks after finishing radiation just as my hair was starting to return. I felt like I’d been run over by a truck but kept working since our insurance was tied to my job.
I don’t often tell my personal story anymore, instead I try to be a voice for all IBC patients. Many know I went through treatment for inflammatory breast cancer (IBC) although some probably aren’t aware of the specifics. My husband says the diagnosis lit a fire under me to accomplish life goals. Before cancer I’d planned to become a nurse midwife but after cancer I realized that was no longer realistic, however I did want to complete my degree. While still working full-time, I completed an RN to BSN program. While doing research for a graduation project I met others with IBC who were part of an e-mail discussion list. How exciting it was to find out there were others alive!! (This was long before social media) Connections made there resulted in the formation of the non-profit Inflammatory Breast Cancer Research Foundation and my official launch into advocacy work. Little did I know how that would change my life!
You see, my diagnosis was in March 1994. The initial symptoms that sent me to the doctor were in late August of 1993. That’s why I said I’ve already won the lottery. When I was diagnosed IBC survival was about 3% at 5 years. When pushed for my prognosis the doctor said hopefully 12-18 months. By diagnosis I was 41 years old enjoying a 3 month old granddaughter. When I reached a year from diagnosis I wrote a letter of thanks to those who had been my biggest support. Holding and rocking a sleeping baby was some of my best therapy! Of course a 1 year old wouldn’t understand her role in helping me so I asked my husband to give her the letter “when the time is right”, assuming I wouldn’t be around to do it. Well, she finally received the letter the week I celebrated 20 years from diagnosis, just days before her wedding. That’s winning the lottery, folks!
Another of the ‘lottery prizes’ I’ve received is seeing that little granddaughter grow up, get married, and have her first child! No amount of money can match the feeling of holding my great-granddaughter! Now we’re excitedly waiting for her little sister to arrive later this summer. I never dreamed I’d live long enough to have 9 grandchildren (we also have 2 angel grandchildren) and 1 1/2 great-grandchildren! As I said, it’s like winning the lottery every day! I wish such joys for everyone diagnosed with this crummy disease.
Things have improved for those facing a diagnosis of inflammatory breast cancer (IBC) since 1994. However education and awareness of the disease have been a slow process and need to continue. When we started the Inflammatory Breast Cancer Research Foundation we could only find one person doing research on the disease. The field is still rather small but we’re working to interest more young researchers by joining with other organizations allowing us to accomplish more together! If you’d like to join us and help me celebrate 24 yr by supporting needed research click here to donate!
As I said, I’m not what you’d call a gambler, however my experience shows that statistics can only tell you so much. When the doctor told me the prognosis I reminded him that I’d taken statistics in college so someone had to be in that 3%….and I was aiming to be one of them. Now don’t assume that I’m someone who believes “positive thinking” will keep you alive, I don’t. However trying to remain optimistic certainly improved my day to day outlook and ability to face the challenges ahead.
So what do you think….for whatever reason I’ve certainly beaten the odds, even by today’s improved stats. Is it time to buy a lottery ticket! (smile)