I met Dom online through her group, Poison Temple, and I was astonished that I hadn't met her in Seattle on the bazillion and one occasions when we crossed paths. We've had a very weird friendship. Most of the time we get frustrated with each other but, because she is capable of seeing the best in even the worst people, she forgives my shortcomings.
Earlier this year, she was diagnosed with breast cancer. The fact that she's only a year older than myself really brought this disease - the same disease which killed my husband's mum - home to me. So many women are struggling with this on a daily basis; being goth isn't an excuse for staying as healthy as possible.
As a result of Dominique's struggle, her honesty (she doesn't like calling it "courage" because she's gone through some serious hell as a result of people's stigma), and the circle of friends she has, we've all become even closer, the freaky from all over the world banding together as much as we can, showing in our own way what Dom means to us.
Please, sister - Keep on Keepin' On! Nothing can quite describe the moment when the doctor tells you that you have cancer. I sat in the office chair, fiddling with the laces on my boots, tying and untying them over and over as he spoke, desperately trying to stay focused.
It is a moment like no other. Words such as “invasive” sound ominous and evil. Phrases like “survival rates” and “mastectomy” are utterly terrifying. I made it all the way to the parking lot and shut myself in my car before breaking down and crying hysterically. After over a month of painful needle biopsies and various medical testing, it was determined that I had breast cancer.
INFILTRATING DUCTAL CARCINOMA, MODERATELY DIFFERENTIATED. THERE ARE A FEW PATCHY AREAS SHOWING INTRADUCTAL CARCINOMA, OF INTERMEDIATE NUCLEAR GRADE, AND OF CRIBRIFORM TYPE, WITH A FEW DUCTS SHOWING INTRALUMINAL NECROSIS.
Sound like a bunch of gibberish? Well amidst the shock of finding out you have breast cancer; you have also just started a relay race of sorts. You must somehow get past your initial horror and instantly become a medical expert within two to three short weeks before you begin your first steps to eradicate it. Your familiarity with medical knowledge will be a deciding factor as to whether or not you have your breast fully or partially removed, whether you undergo the rigors of chemotherapy and so much more.
My first crazed thought upon hearing the diagnosis was simply “GET THIS THING OUT OF ME RIGHT NOW!” At first, in a daze, I just signed up for whatever treatments the doctor recommended. Ironically, the very morning after receiving the diagnosis I was scheduled to fly out of state to visit my Grandfather—who was dying of cancer. I saw him suffering in the final stages of cancer, unable to even speak by then. He died within a couple hours of my saying goodbye to him and catching a plane home. I wondered to myself, would this be me later? Was this how I would go also?
I am so young. I have two beautiful children. How could this have happened? Breast cancer doesn’t run in my family. I don’t smoke. I breastfed each of my children. All this should have kept my risk very low. I wasn’t even due to have mammograms on regular basis for another ten years according to the health authorities.
For years though, I had lumps in my breasts. Every year during the yearly checkups at public health, doctors would tell me, “Oh, you just have that fibrocystic breast disease. These lumps are normal for you. Don’t worry, you are too young to get breast cancer.”
And so I would not worry each time I felt these mysterious lumps. I just did what they said and cut down on caffeine. I went on this way until February of this year, when my regular doctor was too busy to have me in on short notice and so I made an appointment with a nurse practitioner instead, just so that I could get in and get a prescription for birth control pills.
During the standard breast exam, the practitioner felt one of my lumps and started asking me questions about whether I had breast cancer in my family. I replied that I did not. She said, “Hmmm, well a lot more younger women are getting it these days, so we better send you for an ultrasound just to be safe.”
This was the first person to ever take that extra step. I tried to be calm about it. But I think somewhere deep down I recognized something was wrong with me. I had a terrible dizzy spell getting up off the table and almost fell down on the floor. The nurse made me stay lying down for awhile until I got my bearing again. She assured me that my lump was probably just a cyst, which they could aspirate.But they would not be able to aspirate it, and I would have countless needles stuck in my breast over the next month, trying to determine just what this thing was exactly. I would find out later that mammograms do not always catch everything, and that ultrasounds do not catch everything, and that if your gut instinct tells you something about your body, it is probably correct.
Until you get breast cancer, or someone close to you does, you really have no idea how incredibly widespread this disease is. I am astounded at how many women suffer from this. And I am astounded at how many young women such as me are not treated properly for it. Most all clinical studies are done on women 45 + in age. Standard mammograms are not covered by insurance for women my age unless there are special circumstances. We put masses of money into Viagra research or weight loss drugs. In the meantime, one out of every eight women will get breast cancer in their lifetimes. I was shocked at the realization that the numbers were so high.
They said I was too young to get breast cancer, at my current age—thirty-four years old. However, by the rate of growth on my tumor, I actually have been carrying this cancer around since my late twenties. I’ve been walking around with untreated cancer for perhaps eight or nine years. I noticed increasing fatigue over the last couple years that I struggled with greatly. But like most women, mothers especially, I attributed the fatigue to my own failings somehow. All this time the tumor was growing and growing, right through all of my doctor’s visits.
And so now I type out this story of mine with mainly one hand. Underneath my left arm is a drainage tube that protrudes from an incision under my arm, which makes movement very uncomfortable at present. On April 16th I had approximately half of my left breast removed, and my axillary lymph nodes dissected. My nipple is still there, although it has a Frankenstein-like appearance as it is half stitched on and healing. Next on my agenda: chemotherapy and radiation. In other words, baldness, vomiting and burns (oh my!). The rest of my year is pretty well booked, engaging in The Fight.
In spite of all this, finding out I have cancer has been one of the most meaningful experiences of my life. It simplifies things. It shows you how amazing your friends and family can be. It brought me an unexpected relationship partner. You don’t know what cancer will bring you from one day to the next. Surprise! The pathology report shows your tumor to be TWICE the size we thought! Surprise! We just found an extra lump!
There are unpleasant surprises. But there are also pleasant ones. Unexpected gifts from halfway across the world, an ending to family feuds and separations, outpourings of love and support.And so, in my usual custom, I invite those who are interested in exploring the experience of breast cancer to embark on the journey with me and find out what happens next. I will open up my first journal entries about it and continue to report with an insider’s point of view on this very feminine disease and give you all the gory details, pictures included. Will I live? Will I die? Will I look ugly bald? Will I be able to maintain relationships and my lifestyle? Stay tuned and find out….
