I entered Beth Israel Deaconess Hospital in Boston via the emergency room on Friday, July 21, 2023 around 8pm. It was very hectic with many patients in triage. My ambulance drivers were super polite, yet direct, and I was immediately moved out of the entry and into a room in the ER.
Curtains were pulled around me and nurses immediately came in to see me. From 8pm until around midnight, I had many neurologists coming by to assess my status. They gave me standard tests where I would read cards with words and pictures, answer questions such as: what is the date, where are you, what city, what state, name the months of the year backwards, and name as many animals as possible in one minute.
I definitely had trouble with the months and animals, drawing a blank frequently. The doc pointed to his tie, his collar and his cuff. It took me some time to remember the word for cuff, but eventually it came to me.
Jan was with me from the time we went to Emerson, and Eva came quickly to the BIDMC ER. They were so loving and supportive and very worried. We had some meaningul exchanges there which really touched my heart. “You never have to go through anything alone; we are here for you and with you.” This was the one thing that will always stay with me. After years of attempting to prove my independence – for my sake and theirs – they could now step up and wrap me in the comfort of their love.
Around midnight, I was moved to a private room because there was an 85 year old woman with a stroke dying on the other side of the curtain. At some point, I was given steroids to reduce the swelling of the tumor which was pressing on the right side of my brain. By the next morning I had many more words! Steroids seem like a miracle drug. My kids and I were amazed.
I was in the private ER room for most of Saturday as I waited impatiently for an MRI to confirm what was seen on the CT scan at Emerson: Lesion, left side of the brain. Turns out there was a problem getting the MRI in a timely fashion because in January, I had an implant placed in my chest on the right side – the Inspire device for sleep apnea. The radiologists were not sure about the level of magnetism in the device. Around 3pm the moved me to a private room on the 11th floor of the Farr Building, for neuro-oncology patients. Still no MRI.
I was agitated because I was now being told that the MRI would not take place until the next day – Sunday. I had my Inspire remote control with me but didn’t have access to the paperwork explaining the details. Eva and Jan went out of their way to find the paperwork in my house and bring it back. At the same time the radiology department was contacing Inspire for information. Weeks later, I found out that all the information was on a website, accessible to anyone with questions about all aspects of the device, including MRI.
Back at Farr, the nurses put padded leg ‘boots’ on my lower legs to stop potential blod clots, wired me me up to machines to monitor my pulse and blood pressure. I did not want any of it. I was frustrated and tired. However, over the next 3 days I grew to love and appreciate my nurses for their dedication to my care, and the concern and attention they provided.
In this image you can see the white cloudy area which is the swelling, encroaching on the right side of the brain (he image is in reverse). The tumor is the circular dot.
During the day on Sunday, I had visits from several on the neurology team. One of the neurologists reassured me that having the MRI on Suday was actually very good since the neurology and oncology doctors have a weekly roundtable every Monday morning, to discuss all the cases. That felt fortuitous!
Sleeping in the hospital was nearly impossible with all the beeping, vitals checks every 3-4 hours, not to mention that the woman on the other side of the room snoring very loudly.
I made it through the night and Monday morning came early. I was wide awake at 5am watching the dawn over the buildings from my window. I was blessed with the window! Funny how certain things become blessings.
At 9am I had a visit from Dr. Grace Ho, the neurologits/oncologist after the roundtable meeting. She went over the MRI images and showed me the swelling and the tumor. This brain lesion is called Glioblastoma. I would be visited by many doctors and the gifted surgeon over the next couple days.
The hardest part has been trying to connect this diagnosis with my ‘self.’ Still processing every day.