This article is part of the series “One Moment At A Time” about my family’s journey as we help my mother fight brain cancer. Feel free to subscribe below to receive periodic updates about our journey in your email inbox. Thank you for your continued support during this challenging life moment.
This article is a continuation from the previous post “The New Normal: MRI Test Results Via An App”
ANXIOUSLY WAITING FOR NEWS
The beeper device in my front pocket began vibrating after what seemed like we had waited forever. The front desk staff at the surgery center told us before the biopsy began that the surgery would last two to three hours but we were approaching hour four. We had all been anxiously watching each second pass by in the large, second floor waiting area, trying not to think about what they were doing to my mother’s head in the operating room. I quickly jumped up out of the cushioned chair and walked over to the main desk to turn in the vibrating puck.
The assistant led us through the door next to her desk and into the briefing room. It was a small, windowless room about the size of a small bedroom. The fluorescent lighting from the drop ceiling brightly illuminated the white walls. Maroon-colored, cushioned chairs with wooden arm rests positioned side by side lined each side of the room.
Mike, Abby, Mike’s son and I somberly sat down. No words were spoken as we anxiously watched the closed door anticipating the neurosurgeon to open it at any second. The manual clock up on the wall ticked as each long second passed. Tick. Tick. Tick.
SO MANY QUESTIONS
Our bodies riddled with emotional stress. Our hearts and minds praying for some sort of positive news even though we sensed we needed a miracle. We most importantly wanted to make sure my mother’s surgery went well. But secondarily, we knew my mother had a large tumor, so we were all hoping to hear that it was benign, or that there was a way to quickly eradicate whatever was on my mother’s brain.
And another question that heavily weighed on our minds was if the quick damage that she had endured recently from the tumor was reparable. My mother’s verbal communication and comprehension had rapidly decreased since we first went the Emergency Room a week ago. We needed some quick answers to come up with a plan to stop the unexpected regression.
LEARNING WHAT I DIDN’T WANT TO KNOW
It had only been days earlier from her biopsy that I had received a random notification on my phone that indicated the hospital had released the results of the MRI report to my mother’s chart in the hospital app. Even though the MRI had taken place over a week ago, it took the hospital several days to release the information.
My sister, Abby, had come over later in the evening after I had read the MRI results and quickly realized something wasn’t right. I wasn’t able to control myself. My mind had broken down. The strength I tried so hard to maintain had been compromised. I couldn’t hold back the onslaught of emotions. Abby had asked what was wrong and I told her that she didn’t want to know. I told her that I had been researching. And she immediately shook her head.
Both Abby and Mike didn’t want to know why I was so upset. And I could understand why. I didn’t want to know what I had just learned. I couldn’t stop crying for an entire day. Crying myself to sleep trying to unlearn what my eyeballs had seen and what my brain had naturally stored as it was programmed to do.
My diaphragm violently contracted as I wept. The uncontrollable pain from each movement made my heart even heavier. It was like a canon shooting off bombs of anger, sadness, pain, and shock directly at me in rapid succession. Nothing could calm me down except time.
THE MRI
The MRI test results quickly popped up on my illuminated screen. I wanted to pause and prepare myself for what I was about to see but my eyes couldn’t wait any longer. “Very large centrally necrotic mass extending from the left frontal lobe to the anterior left temporal lobe. Multiple enhancing lesions …”
Necrosis: the death of most or all of the cells in an organ or tissue due to disease, injury, or failure of the blood supply.
The report continued with numerous medical terms that I couldn’t pronounce. As my heartbeat began to increase, I wasn’t able to stop reading as I wanted to know what everything meant. I continued through the brief summary which ended with the following statement, “Differential could include: Gliomatosis cerebri, Multifocal glioma, Lymphoma or Metastatic disease.”
TERMINOLOGY
I didn’t really understand what any of those big terms meant. I have heard of lymphoma and of metastatic disease, but I didn’t understand the other terms. In an attempt to help briefly educated you on what each of these terms mean, I have pasted in descriptions of each term listed in the report:
Gliomatosis cerebri
Gliomatosis cerebri (infiltrative diffuse astrocytosis) is a rare primary brain tumor. It is commonly characterized by diffuse infiltration of the brain with neoplastic glial cells that affect various areas of the cerebral lobes. These malignancies consist of infiltrative threads that spread quickly and deeply into the surrounding brain tissue, or into multiple parts of the brain simultaneously, making them very difficult to remove with surgery or treat with radiation.
Multifocal glioma
According to the Mayo Clinic, a glioma is a type of tumor that occurs in the brain and spinal cord. Gliomas begin in the gluey supportive cells (glial cells) that surround nerve cells and help them function. Multifocal gliomas (or glioblastoma multiforme) are tumors which have multiple discrete areas of contrast-enhancing tumor embedded with signal abnormality. Glioblastoma multiforme (GBM) is associated with extremely poor prognosis and survival.
Lymphoma
According to the Leukemia and Lymphoma Society, Cerebral lymphoma or primary central nervous system (CNS) lymphoma. Lymphoma is a cancer of the lymphatic system. Lymphoma in the brain is rare. Treatment of primary CNS lymphoma was surgery followed by cranial irradiation; the median survival was 12 to 18 months.
Metastatic disease
According to Cancer.net, metastasis is the medical term for cancer that spreads to a different part of the body from where it started. When this happens, doctors say the cancer has “metastasized.” Other names for metastasis are “metastatic cancer” and “stage 4 cancer.” Sometimes the term “advanced cancer” also describes metastatic disease, but this isn’t always true.
DR. CALVIN DIAGNOSIS
Based on all of the tests the doctors performed on the rest of my mother’s body the previous week, they had ruled out any type of metastatic disease which left three other terms to dive into.
After reading the details of the MRI, and of course I am no doctor but just applying a little common sense combined with what I had experienced with my mother’s symptoms, I ruled out lymphoma. Plus, lymphoma of the brain is rare. Which meant that my mother most likely had one of the first two terms listed on the MRI report. Since a glioma is much more common than the first term listed, Gliomatosis cerebri, I decided to begin my initial research on glioma.
DON’T RESEARCH ON THE INTERNET
I have heard from many people not to research medical symptoms on the internet. I realize researching online is like running through a corn field trying to find the perfect kernel of corn. The internet is overwhelmed with information and not only that but you are also bound to find a bunch of bad news. Plus there is much disinformation online that it is tough to know what is correct and what isn’t.
However, my thought was that the terms were so specific in the MRI that I could arm myself with basic information from reputable sites. I felt that I needed to prepare myself with as much information as much as I could.
As I dug into the term glioma, I learned that all gliomas are graded. While only the pathology report that we would receive in three to five days would tell us a specific grade if it was in fact a glioma, I realized that I could compare the MRI language that I had received to the grading descriptions that I was reading online. As I scrolled down through the grades one through four online, the only grade that mentioned necrosis, which was certainly something listed in the MRI report, was the highest grade (Grade IV).
After I re-read the glioma grading and looked again at the MRI report, it felt like a bomb had gone off in my heart. I had made the connection between what I was researching and my mother’s imaging results. I couldn’t breath. My body became temporarily paralyzed. I struggled to pull my hands up to my chest as I was hyperventilating. My breathing became the heaviest I have ever experienced in my life.
GLIOBLASTOMA MULTIFORME
As the floodgates opened over my cheeks and my chest was pounding heavily, I couldn’t stop diving into what I was reading. I had to know what was going on. I quickly Googled “glioma necrosis” and the main word that continually showed up in the results was Glioblastoma, a word that I had never heard of in my life. I reread the MRI language again and the term glioblastoma multiforme is what matched up to what I was reading.
My head was numb as my fingers slowly typed the words ‘glioblastoma multiforme’ into the Google search bar. My head immediately fell forward like a loose hinge flapping in the wind. My heart had been stabbed. My body ached with fear and anger. My life as I knew it changed forever.
I know you may want to google the term above. However, please be prepared. The information that comes up is tough to read. It has been 45 days since we first learned of this information and my mother has been performing decently since. We are continually looking for (and finding) ways to fight this situation. We continue to pray hard and remain hopeful for a positive outcome. Don’t let words that you read discourage any type of hope!
BEDSIDE MANNER
My mind was in a trance thinking back to everything I had researched as the stainless steel door handle slowly turned. Dr. Young, my mother’s neurosurgeon, appeared as the door drifted open. He walked into the still room and stood about eight feet in front of us in his blue scrubs from surgery with a very solemn look on his face, almost appearing rushed.
In very few, concise words, Dr. Young said the surgery well and that they were able to get enough tissue needed for the pathology report. As he remained standing he said the tumor board will review everything and provide a pathology report to us in three to five days.
“Any questions?” Dr. Young candidly said making it feel like he didn’t want to elaborate on anything else and wanted get the hell out of the room. He was all business. You could tell he didn’t want to deal with the communication or with the family. All he wanted to do was to perform his job as a brain surgeon.
After a few brief moments of silence, I racked my brain thinking back through what I had learned. “So the MRI report described a very large necrotic mass. Does this mean that the tumor has already grown so fast that it has begun to die?”
“The presence of necrosis indicates that your mother’s tumor is malignant and is very aggressive. Any other questions?” Dr. Young quickly responded clearly ready to end this uncomfortable meeting.
IF I COULD TURN BACK TIME
I looked over at my sister, Mike and Matt and could see the shock on their faces. Dr. Young in one simple sentence confirmed everything that I had researched, something that I had not shared with anyone up until that point except my best friend Amanda. Mike keeled over in his chair placing his hands on his head. It felt like a dagger to the heart. I didn’t want the doctor to tell me I was right. I wanted to be wrong so badly.
I shook my head back at the doctor as he stared down at us. He turned and quickly vanished out of the briefing room closing the door behind him. Mike and Abby began to weep as the news quickly set in. The ticking noise from the clock returned and pulsed through my head with each second. I shut my eyes as my cheeks and sinuses began to swell. We all sat frozen wishing we could go back in time and restart.
… To Be Continued. CLICK HERE to continue.
One moment at a time.
I plan to continue to write about this new life journey. It is a tough topic to write about but I feel writing will be a great emotional release for me and could help others along the way going through something similar. If you would like to receive a weekly update, feel free to enter your email and sign up below.
Would you be willing for the bryan times or montpelier leader to do a cover story so others can be made aware?
Hi Nancy – We had not considered this but maybe with the upcoming fundraiser it could make sense. Have the newspaper’s contact me if they want to. Thank you! Cory