Today I want to share a story other than my own. I've met so many women beautiful women who have walked this road before and some that are walking it now. As part of my 31 days of Breast Cancer Awareness Month series, I've asked several of them to share their story, each one so different.
SDG 💗 Tika
Meet Alisa:
AN OUT OF BODY EXPERIENCE
I’ll start this cautionary tale like many breast cancer stories begin: I was young (or so they tell you when you get cancer in your 40’s), had no history of breast cancer in my family, and none of the causal factors. That being said, I dutifully had my annual mammograms starting at age 40. By 44, I had lost some weight, was working out regularly and was truly in the best shape of my life. I was determined to hit middle age without missing a beat, intent on setting myself up for a long, strong, healthy life.
I had started with a new GP who had taken over the family medicine practice of my beloved GP following his retirement. The new doc and I had not yet found our groove when she called me with the news of my mammogram. She handled it so poorly that I’ll never forget nor forgive the impact it had on me. I was traveling for work. She left me a voicemail at 4:55 pm, saying that there were some abnormalities and to call her back. I called back within five minutes, terrified, and she had already left for the day. That thoughtless, heartless, woman left that kind of message for me, knowing full well that she and I would not connect that day. I spent a sad, lonely, sleepless night in my hotel room, 1,000 miles from home. I didn’t feel that I could even call anyone for help or sympathy, as I didn’t know what news there was to share. I reached the doctor the next morning. She referred me to an oncological clinic. We never spoke again.
I met a kind, generous, thoughtful, and helpful team at OHSU. There I was told that I was “lucky;” I had Ductal Carcinoma in Situ, which according to them is hardly breast cancer at all. The recommended treatment for DCIS is lumpectomy followed by 6 weeks of daily radiation. The idea of radiation scared me more than the cancer did. Ironically, because I had slimmed down, there was very little fat tissue between my breast and my heart. The radiologist told me I had a 15% chance of developing permanent heart damage from radiation, given the location of the tumor at the back of the chest wall. Also, because of the small size of my breasts vs. the size of tissue they would need to remove during the lumpectomy, I would need (ok, want) reconstruction. It sounds radical, but based on these factors, I opted for a mastectomy. At the time, I asked what the chances were of developing cancer in my remaining breast. If they were high, I definitely would want a bilateral mastectomy. I was assured that my odds were no different than had I not had the DCIS diagnosis. The mastectomy and recovery were pretty easy on me. I kicked back during a 4 week leave of absence from work and enjoyed lots of reading and binge-watching.
The following spring, I had reconstructive surgery, and all things considered, I was happy with the results. I had not been prepared for the complete loss of sensation from my clavicle to the bottom of my ribcage.
I followed up with a mammogram on my remaining breast the next fall. In the spring, a year following my reconstructive surgery and 6-months after that negative mammogram, I had a follow up appointment with my oncological surgeon. As she examined my remaining breast, she found a lump. I was not so lucky the second time. This was stage II, invasive carcinoma, HER-2 positive. Again I was traveling, again I received news over the phone, again I was left crying and alone in a hotel room, this time 3,000 miles from home.
And this is where the out-of-body experience begins. The crazy thing about breast cancer is that you don’t feel sick until someone tells you you’re sick. The cancer doesn’t make you sick, the treatment does. During the entire course of my chemo, and the after effects, and the hair loss, and the weakness, and the nausea, and the sleeplessness, and the hot flashes, I had this bizarre feeling like it wasn’t really me going through the experience, but rather the rational me observing someone else. Oh, here is what someone who has cancer does. Now she goes to this appointment, because they tell her to. Now she goes to purchase a wig, not for her own satisfaction, but for the comfort of people she works with. Now she has an MRI. Here is her going into surgery to have a port put in. Now she sits in the chemo chair, waiting for poison to entire her body, because that’s what cancer patients DO. I was never a pink-wearing, poor me, complain-to-the-world type. In fact it made me feel incredibly uncomfortable when people described me as brave and strong. Brave? Strong? Hardly. This was the most passive I had been in my entire life. Bravery and strength take action. Mostly I was just lying there, letting it all happen to me. Because there was no other choice. Because this is what women who have had two breasts removed in a year-and-a-half do. Because I wanted to be alive. And still it never seemed quite real. I almost felt like someone acting the role of a cancer patient, because it all felt so foreign to me.
But gradually, ever so gradually, nearly five years hence, I’m almost me again. Days at a time go by when I don’t think of myself as a “survivor.” The mirror image looks normal to me, because it IS me; it’s my reality. The chemo-brain fog continues to lift, and I can remember people’s names, and dates, and the titles of my favorite movies again. To this day, I don’t think of myself as a cancer survivor. Cancer doesn’t define me. Maybe that sense of out-of-body was a protective mechanism for me. It worked. I’m just someone who had cancer a couple of times.
