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In March, I shared the story of my mother’s breast cancer diagnosis, and surgery, just as the pandemic descended on Rhode Island and the United States.
Since that time, she had a speedy recovery from surgery, followed by what was to be 12 weeks of chemotherapy. Unfortunately, the chemotherapy took a heavy toll on her wellbeing. Last week, we had to make the tough decision to bring her to the Emergency Room.
Its relevance to LunaYou was ever present throughout the 48 hour crisis. I’m grateful that the Emergency Room allowed me to stay with her, but when she was admitted, I had to leave. I used Journaling to both process and document the experience, so that we might all think about better ways to deliver care.
Journal, July 19, 2020
I have spent a lot of time pondering the healthcare system, and its failings (foibles when I’m feeling kind), over the last few days…
Believe me, I am extremely grateful for the care my mother received, but, human-centered it was not.
My brother and I spent two days “working the system.” We would divide up, he would take the oncology center, and I would take the hospital, sometimes we would switch.
By my count, we spoke to:
- 2 ER Nurses
- 1 ER Resident
- 1 Radiology Tech
- 2 Floor Nurses
- 1 Floor Nurse Manager
- 1 Floor Resident
- 1 Oncology Fellow
- 2 Physical Therapists
- 2 Social Workers
- 2 Case Managers
- 2-3 Nurse Practitioners
- 1 Visiting Nurse
- 5-6 CNA’s
- 4-5 Receptionists
On July 15, it took three skilled healthcare workers to move her from a wheelchair onto an ER gurney, all they saw was a frail elderly woman, whom they kept calling “honey,” and found her sarcasm “cute.” For their sake, it was a good thing she was out of it at that point….
This is my mother post chemotherapy, and before being hospitalized.
I was having a hard time with the thought of the disoriented “elderly lady” alone in the hospital, with only a set of vitals to tell her story. By the afternoon of day two, I wrote this letter and brought it to the hospital.
July 16, 2020
To the Doctors, Nurses, and Care Providers taking care of my mother,
Thank you for all of your help and support, it means a lot to my family.
I wanted to share a photo of her taken April 12, 2020, just one week before she started chemotherapy. My mother is a vibrant, active woman, who walked 2 miles a day through Week Six of chemo.
And then something happened, in just four weeks she went from walking two miles a day to being completely debilitated.
Please help us restore the body, mind, and spirit of the woman in this photo, we miss her.
On 2:00pm, Friday, July 17, my brother and I got word that the hospital was ready to release my mother. However, she would need 24/7 care. There was nothing medically wrong with her, it was considered a “custodial issue.”
We had anticipated this outcome, I had worked the phones all day trying to put services into place. My brother had been running around to stores trying to find mobility equipment and aids that she would need to be safe at home.
We pressed the hospital and oncology center to send additional home services through the weekend. They told us, “if you can’t take care of her, your only option is a nursing home.”
Not much of an option…
And the whole time (ok a lot of the time), I kept thinking what if I was having a baby right now? Would LunaYou offer the protective factor needed to mitigate poor maternal health outcomes?
My answer was yes.
What if the healthcare providers questioned her blood pressure reading? Each woman has a wellbeing dashboard, she would be able to tell the healthcare providers if her blood pressure was normal, she could show them the data, she knows her own body.
Would she be empowered to ask questions, contribute to decision making? Through the LunaYou platform she will have experience crafting her personal story, talking to a Wellbeing Coach, and sharing experiences with other women in the program.
What if something unexpected happened? The women in LunaYou create a Circle of Support at the beginning of their experience, 3-5 people who they can call on if needed, and who she has been communicating with throughout her pregnancy.
I am more resolved than ever in finding better ways to deliver care, and I know that LunaYou will fulfill that mission. No woman should ever be reduced to the color of her skin, her economic situation, or her age. Every woman has a story to tell.
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