The month of April will never be the same.
The first time I had that thought I was 22 and I had lost my best friend to a tragic car accident. She was 21 and in her senior year of college. It was spring break and she was simply on a midday drive to meet another one of our girlfriends for lunch. She never made it.
Thirty year later … yes ... 30 years … 2020, I found myself saying that again, except this time it wasn’t a death of a friend. It wasn’t a tragedy or at least not to me. It was a FaceTime phone call from my Ob-Gyn. She was in a facemask, yet her eyes told me what her words soon would.
As my eyes responded welling with tears, her mask was removed and the human element seen- one woman to another- Breast Cancer, Stage 3, Triple Negative. Less than one month into the COVID pandemic, professionally speaking, she had no idea how the coming days or months would play out.
As the patient hanging up the phone my thoughts were pretty simple: how to tell my mom, my boyfriend, my kids? Thoughts beyond that really weren’t many. I knew there would be more appointments to come and with that a plan of attack. What I did not know was how valuable the team responsible for my treatment would become and how important advocacy would become.
Perhaps it’s my journalist instinct or my constant thirst for knowledge, I’m still not sure. What I do know is following that phone call I did what I would recommend many should do, I grabbed a notebook and began scribbling questions. Then I sent a text message to a couple I knew had once walked this path.
My plan was simple, before being in the company of my medical team, I needed to be equipped with questions. Again, it was COVID, no one would be with me. There would be no second set of ears, no one else inquiring, just me and the doctor.
Because of the “germ” (as my childhood bestie says), so much was unknown by way of how long for insurance approval, appointment times and access to facilities (think hospital beds here).
Now one year later, as I reflect back, I wonder if perhaps it was knowing of this uncertainty that prompted me to approach this all in the way that I did. Perhaps it’s just how I’m wired, truly I’m unsure. What I do know is there were few if any hiccups in my treatment. Delays were only result of reaction or recovery, not “the system” and sadly I’ve walked this path with too many not to know this was fortunate.
From the day I opened that notebook, however, and began taking notes as I FaceTimed with that couple, this became business for me. As I shared with my mom, I was in the business of saving my life and this was my team.
Recognizing I am the patient and they are the professionals, I also felt it important to remember this was my life, quite literally and if I left it all to the “experts” this could and would go longer than I would prefer or desire.
I feel it important to note here that every person, from the ladies who answered the phones, to my insurance call center, to the nurses to my doctors were considered a part of “the team.” I needed every single one of them and made sure I treated them each as such. Never once did I allow my frustration with a delayed approval or mischeduled test interfere with my relationship with my team. Not only did I need them, I was grateful for them and there was (and is) a way to communicate to keep everyone on track for the same common goal: my recovery.
It wasn’t until after the fact, when sharing with a friend once employed by the American Cancer Society, that I learned I was being my own best advocate. In honesty, I was simply trying to get to the next step and as is done with any successful business, you simply don’t let things slip through the cracks.
That’s the takeaway I hope others will take from this piece. Asking questions, making phone calls, following up is not being disrespectful, “pushy,” or questioning a professional. It is simply helping the process along. And for goodness’ sake, keep notes, write stuff down and don’t be afraid to ask the questions.
Medical professionals are juggling a lot of patients, from the front desk to the examining room and with each patient they juggle, they take on their insurance and the intricacy that involves. Removing yourself in a way which makes it not personal and simply business is perhaps one of the most winning lessons from this entire journey.
Dialogue is equally important. Each phone call I had to make ended with the simplest of words, “Thank you so much. I appreciate you,” and I did. I needed them and still do; they are my team and for that I’m grateful.
At the end of the day I could not have weathered a minute of this without a supportive tribe, it’s not an easy path to walk. It is however, manageable, and while April will never again look the same, neither will the glasses I peer through as I look at this wonderful life.