(This was originally written for inclusion in a book about breast cancer survivors, with the instructions to keep it to one page and answer several questions. I agreed to do it for a fellow artist who was going for her first mammogram in her 60's and she dealt with her diagnosis through her art and by writing a book.)
My life before breast cancer: avid gardener, yard work, ceramic artist, mother and stepmother, OCD housewife, Bible-study leader, exercise fanatic.
My life after: reading all I could about it, trying to do all I did before and feeling like crap most of the time, couldn't lift a gallon of milk, switched to using left hand for a lot of things, couldn't pick up full garbage cans or carry grocery bags in--that bothered me a lot. Tried to go back to weight-lifting with bad results. No gardens for years. Disbelief and fear. Letting my already long hair grow even longer. Getting involved in Relay For Life, a story in itself.
People's reactions: surgeon in recovery room after excisional biopsy, "I'm 95% sure it's not cancer." The surgeon leaving and having to return from a black-tie event because I'm hemorrhaging. My husband reading Model Railroading magazines in the recovery room while I go into shock and there's no oxygen and the young nurse telling me she usually works in pediatrics, has no experience in the recovery room. Later, I read my hospital record and it said, "Patient tolerated procedure well." Two weeks later a phone call from the surgeon, "Do you want the good news or the bad news first?"
My church's reaction: casseroles, a few visits, phone calls, cards, my friends--the ones who disappear and the ones who don't when they hear the word 'cancer'. My mother-in-law's first words to me, "Don't you dare die, my son and the boys need you." My eight year old son's question when I told him I had cancer, he said, "People die from cancer don't they?" I said, "Yes, but I'm not going to." His older brother, age 10, asked, "Are you worried about it?" I said, "No." He said, "Then I won't either." But then he wrote about it in school and the teacher put a big red slash through the whole page because he didn't double space the story.
I had complications and my daughter in New York State and her husband, then stationed in the Navy, brought their six-month old baby and came down to help run the house. The after-surgery bra, swelling, and ice-packs made me look as endowed as Dolly Parton. I required a second surgery to remove blood clots and "clean up the margins". Total fiasco. My husband went to work that day. Two female friends from church brought me and we prayed aloud in the waiting room. I was given only local anesthesia. No barrier, no sterile drapes so I didn't have to see, as I had requested. The surgeon actually tossing a piece of gauze on my face instead. I listened to Elvis singing gospel on a portable CD player so I couldn't hear the surgeon talking about his vacation to Holland and all the damn tulips.
My younger sister's friend and colleague in Virginia, a surgeon, offered to do a double mastectomy and reconstruction for free. My sister's response was, "Great, now my daughter has double the chance of getting breast cancer." But she herself got a mammogram the very next day. My other younger sister in Rochester sent me fancy pajamas and asked if there was anything else I really wanted. I said, "Clean windows," and she paid a local company to clean all thirty-six windows in our house.
I read everything I could in medical journals and agreed to participate in a ten-year study for ductal carcinoma in situ with excision only.
Ways I coped: In retrospect, I should have allowed myself some pampering and definitely more time for recuperation, but my absurd determination or independence or as my mother calls it, my "up-hill imperative," kept me from feeling sorry for myself and probably set an example to others, I hope. I would handle it differently now though.
Found a fabulous shop in New York City where tiny Asian women help you purchase bras that fit well and make you look and feel better (even making adjustments with a sewing machine on the spot). This became a mecca (and family joke, as I now had cleavage due to the bras' construction). Went from a 34A to 36D with no padding--go figure. And I had been upset because after the second surgery they removed just a few more centimeters to clean up the margins. All in all, I was lucky. My cancer was caught early. It was confined in an otherwise benign growth and considered DCIS barely stage 1.
I found an excellent oncologist who continues to monitor me. I did end up taking Tamoxifen for five years which at first made me miserably nauseous. Tried splitting the dose to AM and PM, then I was doubly nauseous. Figured out if I timed the split dose until after eating breakfast and a midmorning snack, then later a mid-afternoon snack and dinner, I had barely any nausea.
My advice: learn as much as you can regarding your particular situation. Talk about it. Find a good doctor--bedside manner is key with this. Throw out the ugly after-surgery bras as soon as possible and splurge on sexy well-made bras in colors you've never worn before. (I went from black, nude, and white to navy blue, maroon, hot pink, and orange, with lace.) The name of the shop in New York City is Ripplu on Madison Avenue.(update: sadly no longer there)
If you're pre-menopausal, watch out for menopause. My oncologist did not recommend HRT, bio-identical hormones, or even herbal estrogen-based products. For me that's been hell, currently dealing with instant surgical menopause after an emergency TAH. A monthly massage, reading or hearing other women's stories (this was not commonly talked about, even twenty years ago), keep up the aftercare of blood-work and mammograms, and make use of, or at least try, alternative things like acupuncture and meditation. Don't be afraid to go to a support group, a private psychologist or psychiatrist, or now with the internet, an online site. (I haven't done the last because by the time I was computer-literate enough, I had mostly dealt with the grief, fear, and anger.)
Don't expect your spouse, family, or even close friends to understand or be the support you need. They most likely will be trying to deal with their own feelings. There are exceptions; I'm just saying... Also be prepared for "old feelings" to resurface when you least expect it. Twelve years later, I read in a retiring doctor's initial office visit notes that I had no right breast. I was furious! My right breast may have a scar but it's still very much there.
And last but not least, when asked if I wanted to tell my story for this book, I said yes very enthusiastically, but inside my head and heart I heard these questions: Do I really want to revisit that time in my life? How can I write it in an encouraging, positive way, but also include the bad parts? Should I risk telling the truth, even if it offends family, friends, or the medical profession?
Be forewarned: people will say incredibly insensitive things. "You shouldn't be feeling so much pain. You don't have large enough breasts." (a doctor)
"You'll probably get heart disease too." (a long-time female friend who was into eastern stuff at the time and believed my overly caring nature caused my breast cancer, related to some chakra or something)
"Be thankful it wasn't in both breasts." (a man) Uh... one is more than enough. I wish I had said to that man, "That's like telling a guy with testicular cancer: they only have to remove one of your balls."
"Be grateful it wasn't worse." (several people) Any day a doctor says you have cancer, not a good day.
"Cancer is caused by stress. You need to handle stress better."(several more people) Yeah, and you need to stick your head up your rear end.
My own personal theory on why I got cancer: I was born and lived the first eight years of my life in Levittown, Long Island (a known cancer hot-spot), in my early twenties I was subjected to radiation on my right heel for an obstinate case of planter warts. In my thirties and early forties, I was put on various birth control pills to regulate and control extreme dysmenorrhea (didn't help, and the weight gain and nausea eventually made me give up that route). As far as dietary factors, I was a vegetarian/health-nut from age sixteen. I breast fed all three of my children. Prior to me there was no family history of any kind of cancer.
Does it ultimately matter why? I don't think so. Although a lot of magazine articles, time, research, and money are spent on this, I have come to believe what matters is how you live through the diagnosis, what you learn about yourself, and finally how you choose to use the experience to help others.