Breast Cancer Awareness Month
October is Breast Cancer Awareness Month. It is estimated that approximately 13% of women will be diagnosed with breast cancer in their lifetimes. My mother was one of them.
Breast Cancer Sucks…And Other Stories from the Pink Ribbon Saga
Next week will be 6 years since my mother died of breast cancer at the age of 72. Her last few months were very tough, and the last few weeks were tougher. But I learned a great deal about courage, determination, and the love between a mother and daughter in those last fleeting moments.
Rewind to 2006.
I went to visit my mother in Missouri as I often I could. Only this time, she said to me, “feel this.” As a nurse, “feel this” is never a phrase that you want to hear, because typically, what you end up feeling is far from normal.
But I didn’t have to “feel” it. I could already “see” it. The orange-peel appearance on her left breast screamed “breast cancer” from across the globe. Fortunately, it had not yet spread (or so we thought), and a mastectomy would tame the cancer beast…for a while. For years after her mastectomy, she led a good life.
So fast forward to 2016.
My mother came to live with us because she began to fall, and she attributed it to being “clumsy.” What she had not shared (because she was ashamed) is that she had become incontinent, something that she cried about frequently. She complained about pain in her right hip that caused her considerable dysfunction. My “Spidey senses” went on alert. Her new physician recommended physical therapy, and I thank the heavens above every day for that physical therapist. Upon a routine assessment of her movement and motion, “something wasn’t right.” They reported their findings to the physician, who scheduled a follow-up the following week.
Within a week, a urinary tract infection would lead to rolling off the couch and some significant confusion, and a trip to the local emergency department. She complained of pain in her neck and to be safe, they performed an x-ray of her neck.
“We need to talk.”
That is a phrase that should be removed from medical school, nursing school, and every school. When I heard that, two things happened: 1) My Spidey senses were proven to be in good shape after all, and 2) you discover you don’t hear or comprehend much after that phrase…requiring multiple repetitions to ensure clarity and comprehension.
Not only did my mom have “vertebral bodies” (aka tumors) in her neck, but she had them down her spine, in her skull, and in her shoulders. And those are the ones we could see from the film. A full body scan the next day would show they were “everywhere.” And where do you think the largest concentration was? You guessed it…her right hip. But there was also a pocket right around the nerve innervation to her bladder, which they then attributed to causing the incontinence. She and I cried together when I confirmed for her that her incontinence was not her fault, and nothing about this cancer was her fault. What this also told me is that she was living with symptoms for far longer than she led on and that she had been suffering in silence. Even when asked or prodded for information. For a daughter, that type of insight and reflection creates its own trauma and regret.
My mother went to rehab after being discharged to facilitate a bit of steadiness in her walking and to put some time together to bridge a hospice plan. The rehab center treated her like a Queen, and for that, I shall forever be grateful. Her favorite day of the week was “Spa Day,” where she had her hair washed, set, and dried. She had had a pretty rough morning the day this photo was taken, so that particular Spa Day had a much greater purpose.
This picture was taken exactly 6 years ago today, on Halloween. She loved the Halloween candy corn scarf and pants I had brought her for the day. She showed them to everyone. What I realize now is that she knew she was dying, even in this photo. And I will forever be sorry that I did not spend one more moment with her when I had the opportunity. She never wanted me to leave. I stayed long days and wanted to be sure she was never alone. The tug that the “Center of the Oreo” generation feels is real…the tug between your ill parents and the tug from the needs of your own family is real. And as the filling in the Oreo cookie, your soul feels squeezed on each end.
She was discharged on Halloween afternoon to Hospice care at our home. That evening she sat in her wheelchair with us as we gave candy out to eager children who could not resist talking to my mom, the “witch” with purple hair and tall black hat (her requested Halloween costume)…
“Where is your broom?” asked a smiling child in a Power Rangers costume.
“Harry Potter needed it for Quiddich,” my mother replied. Needless to say, that made the Power Ranger’s night (and quite frankly, was a brilliant answer from my mom on the fly).
Nine days later, my mother was gone. The pain suddenly was more than she could handle, and the Hospice team provided more support to her and to my family than I can possibly ever thank them for in my lifetime or the next. That last day she was very sleepy and would not respond to voices, but I was driven by some unknown force to pull out our old family pictures and share them with her, watched her favorite movies, and read some of her favorite books to her. I stayed in her room all day and into the night and was with her when she took her last breath. My grandmother knew that the time was near but was too frail to travel. I will never forget that phone call to let my grandmother know that her daughter had died. But she died peacefully, with her family around her, and for that she was eternally grateful.
I’ll say it again. Breast cancer sucks.
But I also recognize the advantages that she had, that many do not…quality medical care in the hospital and at home, quality skilled nursing and rehab facility, and insurance to cover care and Hospice services. There are many who cannot afford quality cancer care and other services provided during treatment.
My mother was one of the most fearless and driven women I have ever had the pleasure of knowing. But there was also that underlying fear and trepidation of seeking out care with new or lasting symptoms. I will always remember her being so ashamed of being incontinent, and afraid of what providers would say to her, or how they would judge her.
So, if there are any last thoughts, here they are:
- Listen to women. We say that a lot in maternity care settings. And I am saying it here. Providers, listen to women. Listen to their symptoms.
- Let’s commit to not jumping to judge incontinence. There are real and physiologic reasons for incontinence. We need to eliminate the stigma of incontinence in women and provide compassionate care for those suffering from it. This is a quality-of-life issue for many women suffering in silence.
- Hospice teams are angels here on earth. They provide the most compassionate and personal care that I have ever seen or experienced from another human being.
- Family leave policies and other family leave support would bring a great deal of relief to families struggling to work, raise their families, and help aging and ill parents. The “Oreo Cookie” generation? Yes, it is real. Raising families and supporting parents at the same time can be very tough. But the lessons my children learned during this process are being realized already through their actions and decisions. And have made them better young men.
I love you, Mom.