Looking Fear in the Face

I hadn’t intended to write this post, but I’m just too angry to keep silent. I’m going to share with you part of my mother’s story. It’s ok. She has often said I can tell her story because her story is part of mine. In some ways it is. In other ways it is her own. And together, it is ours.

As you know, I was diagnosed with triple negative breast cancer in November 2007. My treatment consisted of surgery, followed by chemotherapy, followed by radiation. While undergoing radiation treatment my mother called one day, in the middle of the week, to tell me she had been diagnosed with breast cancer. It took me a while to understand what she was saying because it sounded so foreign. Additionally, she had given no indication that she was going through testing. I know her reasoning; we had just been through so much with me and I wasn’t even done treatment. The last thing she wanted to do was worry us if it were not necessary.

I ended up taking one day off from radiation so that I could go with her to a doctor’s appointment. One week after my radiation treatments ended, she had her surgery.

Recently, I’ve been reading more about breast cancer and treatment options. It is part of my own education and acceptance process. I’ve read articles, blogs, and I just finished the book Surviving Triple Negative Breast Cancer. In all these resources the authors have had this to say: if you live near a major city, get yourself into the city and one of their hospitals. Go to one of their cancer treatment centers. That’s what I did. I am forever thankful to our friend who gave me the referral that helped save my life.

My mother had the option of coming to Boston or traveling into Hartford. However, she chose to stay close to home at the small, country hospital that serves the county where I grew up. I went with her to appointments and liked what I heard based on my own research into her diagnosis. The doctors were not contradicting what I gathered through my own research, as well as my recent experience. Additionally, the hospital is associated with Hartford Hospital as part of a network. Her oncologist is from Hartford Hospital. My comfort level was certainly increased.

My mother’s diagnosis was completely different from mine. If there could be opposites, it was ours. As part of her treatment she has had to take hormone blockers for the past five years. About two years into the medication cycle she started experiencing bone pain, along with some other symptoms that were of concern to both me and my sister. My mother dismissed the back aches as a flare up from an old injury, being on her feet for two long at a function, and a recent car accident. All of these things were (and are) probable explanations. However, the aches and pains went on for too long and I decided to go with her to her next oncology appointment. My rationale was twofold. One, I wanted to make sure her doctor got a complete picture of her complaints and my concerns. And two, I wanted to hear what the doctor had to say. As I told my mother at the time, it’s always good to have a second set of ears.

The result was a physical exam, blood work, and ordering a bone scan to make sure the cancer had not come back. That was my fear, but I couldn’t say it. Or even ask her oncologist. It was her doctor who said, “Let’s address the elephant in the room.”

Her oncologist also switched her medication. It turns out that in the majority of cases if a woman is going to have severe side effects from Tamoxifen or Arimidex they usually do within the first three to six months. However, in a small percentage of cases, women have limited side effects until approximately half way through the five year cycle. It turns out that was the case with my mother.

Now you’re probably thinking this wasn’t a very angry post. My anger comes when I learn of substandard care. When a woman’s complaints are not heard. When concerns are dismissed as “normal” for the medication she is taking. When the usual standard of care and treatment is ignored. My message here is to speak up. Ask questions. Seek answers. If you don’t like what you are hearing, keep looking for answers. You are your own best advocate.

And to my mother’s doctors: thank you. Thank you for providing the standard of care that all cancer patients deserve. Thank you for listening to her. Thank you for speaking our fears and looking for answers when we weren’t able to ask the question.

To anyone struggling with finding the answers: don’t give up. You deserve the best.

Have you ever looked fear in the face and said “I just don’t care.” ~ P!nk