Yesterday would have been my mom’s 72nd birthday. Every year on her birthday, in her honor, I bake an elaborate cake. I spend the day in the kitchen, making a mess, trying a new recipe, documenting my progress, celebrating her life – the way she would have done – crafting something new and different, to ring in another year. She’s been gone 10 years. My son, my third child, was only six weeks old when she died. He never knew her, though they did meet once on Thanksgiving.
My mom was diagnosed with breast cancer when I was in the eighth grade. My dad picked me up from my friend’s house, and while looking at me through the rear view mirror, he told me in his classic, emotionless style, “Mom has breast cancer. She’s in her room. Don’t go in there.” At the time, she was 41. My sister was 11 months old. I was clueless. ‘When will she come out of her room? Why is she hiding?’
She lived to be 62. Over the course of 21 years, she was in remission for just more than 15 years. It crept back slowly at first in her bones. Then a spot in her liver. Then her kidney. She lost feeling in her hands and feet. “Neuropathy,” they called it. “Tingling,” she said. But, she was a warrior. She kept on keeping on. Living her life on her terms, one foot in front of the other. We all came home for Thanksgiving that last year. I have two brothers and a sister, living all over the country. We spent the long weekend making all the family recipes while she laid on the couch. My brothers trying to make the famous Parker House rolls, debating what “luke warm” really meant. “Idiots,” she’d say from the TV room. She didn’t look like herself. No one said anything. She slept a lot. Didn’t eat much. That was the last time I saw her.
This past Thanksgiving, I was back at my childhood home with my family, my dad and my sister, getting ready to prepare that same elaborate spread. I got up early Thanksgiving morning; there was a Green Bay Packers game that day, and we needed to be done in time for my sister and her fiancé to get to Lambeau. In the shower, I was going over the schedule in my head, mindlessly doing a self-exam. I felt the lump. Not really a frozen pea, but more like a cable or knot. (Don’t they say it would feel like a frozen pea?) I rubbed it a lot. Poked it from side to side. Used my other hand. Damn. My demeanor changed. Worry started to consume me. I got dressed, went through the motions of the meal, casually sticking my hand in my bra every now and again. ‘Yep. Still there. Now what?’
Over the course of the next several weeks, I saw five or six doctors, had multiple mammograms, ultrasounds, biopsies, CT scans and an MRI. My primary tumor was five centimeters long, running vertically in my right breast, and the lump I found on that cold Thanksgiving morning, was an affected lymph node right at the corner my armpit. Turns out there were several other lymph nodes affected as well. The MRI results gave us a very clear picture of what was in me. Cancer. A lot of it.
I’ll be honest; I took Xanax. After a week’s worth of sitting with the malignant diagnosis, before we knew any details, I was spinning. Not so much from the cancer itself, but from all the waiting. Waiting for test results. Waiting for new insurance to see the doctors I wanted. Waiting for details on the type of cancer it was. Waiting for all the unknown things we were yet to learn. Waiting. Waiting freaked me out. Information is powerful. Without it, you spin aimlessly. You need it. Xanax helped, but information was the key for me.
The surgeon said, “Icky cancer, that’s what you’ve got. One that’s elusive to mammograms, but not to treatment.” We organized a big meeting with the surgeon, the nurses, the oncologist, the radiologist and the coordinator. My dad, my husband and I sat facing them all, as they unloaded all the scary details they had about my new “friend.” My cancer is triple positive – Estrogen, Progesterone and HER2 Neu positive. It’s rare. Only 20 percent have it. It used to be a death sentence to be HER2 positive, but now there are targeted drugs with good response statistics. My treatment was set up to include six rounds of chemotherapy (Taxotere, Carboplaten, Perjeta, Herceptin) before surgery in order to shrink the tumor before taking it out, which we hoped would mean less surgery for me in the future. Radiation would follow surgery, and depending on what surgery I chose (I CHOOSE?), I could expect some reconstruction in the middle, before and after the radiation. Additionally, I was prepared to expect targeted infusion drugs for an entire year, oral hormone suppressants once radiation was finished and, possibly have my ovaries out.
Stop. The. Feedback.
The details were coming fast and furious. It felt very much like learning a new language – a language that your life depended on. How did I get here? Who are these people? How are we going to manage it all? I know why my mom hid in her room.
Just after the New Year, things started to fall in place. My new ObamaCare insurance allowed me to see the doctors I wanted to see at Rush University Medical Center in Chicago without issue. I had a port installed in my upper chest for easy access to my veins. I started receiving treatment, which is called “infusion,” once every three weeks. My oncology nurse organized my appointment schedule and printed it off for me each visit, including every extra Echocardiogram or follow-up surgeons meeting, helping keep all the appointments on the same day, for less trips downtown. It became much less overwhelming and only one hurdle at a time. If I can manage to put one foot in front of the other, the rest of this will fall in place.
Fortunately, a lot of time has passed. From that big doctors meeting to today, I have crossed lots of items off the list. I’ve survived chemotherapy and hair loss, the metal taste and the loss of feeling in my feet. I’ve had my breasts removed and come to terms with losing my nipples, something I had a very hard time getting my head around. I survived 33 rounds of daily radiation which caused third degree burns and the loss of one my implants. Altogether, I’ve spent a little more than two weeks in the hospital, had 18 of my 26 infusions and am meeting with a gynecological oncologist next week to mentally prepare for an oophorectomy (removal of the ovaries). But, most importantly, on top of all of that – I’ve been pronounced “cancer free.” The sweetness of which, I can almost taste.
Much like the experience of giving birth, you quickly forget how bad it was. Today I’m dealing with the emotional side of having only one implant, seeping stitches and lopsided bra. But, truthfully, it’s just a new starting point, not an ending. I have a powerful team of experts to guide me, and an amazing support system, and if I can manage one foot in front of the other, I’ll find my way through this, too.
Meanwhile, there’s cake. Lots of cake. Happy Birthday, Mom.
Thanks for showing me the way.
Contributed by Jeni Moore
Married to Bill for 20 years.
Mother of 3: Madison, Lilja and Ray Ray.
Designer by day, potter by night.
Recently added: Breast cancer warrior.