The Silent Thief: Brain Cancer's Toll on Our Love and Life
It was December 4, 2015, with overcast weather outside. Two kids were playing in the other rooms of the house while Christmas picture books were being designed in the office. There had been headaches, but they only seemed to hit when picking up the kids after work. Probably allergies but couldn’t be that bad because ibuprofen seemed to cure things. However, the doctors wanted to rule out any issues, so a CT had been done two days before. The cellphone rang around 4pm and I answered the phone to hear “the doctor has been calling me a few times today. I was in meetings and couldn’t answer the phone so just called him back. The doctor said I have diffused anaplastic astrocytoma. What does that mean?”
Our life changed in a heartbeat. We went from preparing to celebrate my 34th birthday to google searching MD Anderson and preparing for a Monday phone call. It’s been over 8 years, but I remember those boots well. Was the blood from Sean? They were ostrich boots straight out of the operating room. I remember joking about how uncomfortable the boots must be during long surgeries. However, one look into Dr. Sujit Prabhu’s eyes told me this wasn’t a time for joking. “I couldn’t get into the deepest part of the tumor that is closest to his thalamus. I got what samples I could, but I do think this is a diffused glioblastoma.” I asked how long we had, and he replied, “I don’t think the outcome is good.”
We walked through the 8-month journey of juggling an infant who started the journey at 6 months old and a 3-year-old. As we walked through this journey, I learned a lot of things I carry with me. I want to share them and not in any significant order:
1. Asking a family in the middle of a crisis “what do you need?” is suffocating. It places the project management load onto an exhaustive system.
2. Brain cancer is awful because the person with the disease changes and they can’t see the changes just those around them. Many times, the grief from those changes is stronger than the grief of the funeral.
3. Patient centric care must include the immediate support system. Caregiver burnout is real and critical to acknowledge.
4. Overwhelming amounts of paperwork, apps and information aren’t helpful. The system is exhausted and medical professionals who can decipher when and how to provide information is important. Side note I threw away over 100- 200 pages of medical related materials (these were not medical records) after Sean’s death.
5. I wish that neuro-oncologist could help train physicians on how to approach end of life conversations BEFORE it’s too late. Dr. Wai-Kwan Alfred Yung and his team are forced to do this every day. Working in medical surgical floor, I wished that many of the patients had been presented this conversation way before.
6. Clinical trials are important, but exclusion criteria are too narrow. Sean didn’t qualify for any trials because of the extremely narrow criteria.
As we go into May and remember those who have died from brain cancer and currently live with it, I hold firm to the following quote.
"The reality is that you will grieve forever. You will not 'get over' the loss of a loved one; you'll learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again, but you will never be the same. Nor should you be the same nor would you want to be." - Elisabeth Kübler-Ross and David Kessler
