October is Breast Cancer Awareness month, so I thought that I would share my story. Luckily, I have never been diagnosed with breast cancer. And hopefully, I never will be! But my life and my family’s life have been deeply affected by a history of breast cancer and continue to be so.
It all began when I was 16, and my mom saw a rash on her breasts.
At first, she didn’t do anything, she waited to see if it would go away. When it didn’t, she then decided to wait until after Christmas because she didn’t want to “ruin the holiday” with all of us worrying. These were her words, not mine. Then, she waited until after my birthday (which is in March), again out of fear that she would ruin my big day. And so finally, months later, she went to the doctor about this mysterious rash that wasn’t going away. The doctor took some photos but told her everything was fine. And then, as fate would have it, another doctor in his practice caught a glimpse of the photos and contacted my mom. He said he wanted to do a biopsy just to double check and make sure everything was okay. You see, he had heard of this very rare form called inflammatory breast cancer. One of the main symptoms was orange peel-like skin on the breasts. No lumps. So my mom agreed to the biopsy. It turns out she had inflammatory breast cancer.
I can still remember to this day when my parents told me. We were sitting at the dinner table when I recalled that my mom had been to the doctor recently. So I asked her, “Hey, what did the doctor say?” And I remember her saying back, so matter-of-factly, “I have breast cancer.” Now, I have to stop here and explain that my mom had a pretty sick and twisted sense of humor, and this was just the kind of thing she would joke about, pretending she had cancer. So I did what I thought I was supposed to do. I burst into laughter, but then my dad said, “No, she’s serious.” And the look on his face,… well, I stopped laughing.
My mom died one year later: April 28, 1999, and there are a hundred million things I could write about that experience. I could have an entire blog dedicated to what we went through and what it was like.
And to this day, I can recall to mind all of the feelings I felt:
I remember feeling confused. My mom would lay in the bed for days after one of her chemo treatments with all the lights off, and then the next day she would be her normal self, wanting to take me to the mall.
I remember feeling proud and awestruck by mom. She went through treatment after treatment with no improvement and yet was still filled with such hope.
I remember feeling thankful for the time we spent together and the conversations we had. My mom was very open about everything and let me ask her brutally honest questions like, “Are you afraid of dying?” She answered all of my questions openly and honestly.
I remember feeling embarrassed for my mom. When Hospice was called towards the end, and my mom was too weak to walk on her own, so my dad would have to pick her up and set her on the toilet. Sometimes she didn’t make it.
And these are only a small fraction of the things I felt. I also felt scared, frightened, angry,… you name it. All of this when I was 16-17 years old. At the end of the day, I would not wish the experience I went through, and certainly not the experience my mom went through, on my worst enemy.
In 2013, fourteen years later, I went out for breakfast from a woman at my church. At one point during our conversation, I mentioned my mom passing from cancer, and when I said it was inflammatory breast cancer, the woman began to cry. It turns out that she was a radiologist at a cancer hospital specializing in breast imagining. She knew exactly how awful inflammatory breast cancer was!
Due to the aggressive nature of my mom’s cancer, she suggested that I become a part of their high-risk breast cancer clinic.
At first, I did not want to go. In fact, I put it off for an entire year, but then I finally went to the clinic and had gene testing. Part of my ability to finally go to the breast cancer clinic was in convincing myself that my results would come back negative. But they didn’t. It turns out I have a gene mutation. No, I don’t have BRCA1 or BRCA2 like so many hear about. I call those the Angelina Jolie breast cancer genes (she has BRCA1). I have ataxia telangiectasia mutated, or ATM, for short. I am not a doctor, so I am not going to try to explain in great scientific detail, but basically it means that when my cells replicate, there is a greater chance that there will be damage during replication, and the cells will not be identical. This increases my chance of breast cancer (and pancreatic cancer). Doctors and researchers are learning more and more about ATM each day, but they do know some things like:
- Radiation increases the chance of the cells replicating incorrectly.
- People with the ATM gene have to greatly reduce their exposure. This even means that I can’t even have the yearly mammogram that doctors recommend!
- Persons with the mutation have to be closely monitored. My doctor has chosen to do a combination of ultrasounds and MRIs with me.
When we were going over the implications of the gene mutation with the genetic counselor, my husband asked how long they had been testing for that specific mutation. The genetic counselor said, “less than a year.” That means that if I had gone to the breast cancer clinic right away, they would have told me I was fine because they wouldn’t have tested for that particular gene mutation. I would never, ever tell someone else to wait to see the doctor, but this one time, procrastinating saved my life!
What does the future look like?
Well, right now, I am enjoying being a mom and breastfeeding my daughter, J. But the doctors say that when I am done growing my family I will need to have a double mastectomy. It might sound surprising, but I am okay with this. Since that year of procrastinating, my M.O. has been to ask myself what my mom would have done and then do the opposite. No passively waiting around for answers or tiptoeing around holidays. When it comes to taking care of myself, I have made the commitment to be proactive. After all, I have a fantastic husband and the greatest little person in the whole world to live for. I need to be around for them for as long as possible.
Hello there, Friend!
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