On Saturday March 4, Eddy and I visited our local Fedex store to work on printing marketing materials for the American Association of Pastoral Counselors. Seated at a computer station, I noticed a sudden sensation of losing eye focus, my head began moving side to side, my breathing changed to a rapid snort, the left side of my face began to sag and my mouth began to druel. I thought, “If I don’t get control of myself, people will soon notice me losing it here.”
About that time Eddy said, “Are you alright? Do you need to lie down? What can I do to help you? What do you need?”
I thought to myself, “this is either a stroke or the effect of a brain tumor. I surely do hope this isn’t fatal. I must tell others to call for help and get me to an emergency room as quickly as possible.” I was having a practical clear thought, complete with appropriate words, but no ability to speak. I was able to reach out my right hand, grasp a pen and scrawl “S T R O K E?” on a sheet of paper.
Eddy said, “Do you want me to dial 911?” I was able to nod my head to communicate. Our Fedex helper intervened and an ambulance arrived in what seemed like two minutes.
I was able to speak very haltingly to the first responders – “Please take me to Providence Portland Center emergency room.”
“No, you have to go to the nearest facility, which is Oregon Health and Science University (OHSU) Hospital, in case you are in an active stroke.”
Within minutes, at OHSU Emergency I was lying in a CT machine for a quick brain scan. As I was being wheeled back to a waiting room I spotted six people clustered around a computer display with very serious expressions on their faces. I thought: “They are looking at my images because they are noteworthy — not a good sign.”
Soon a doctor with “Jacob” embroidered on his emergency-room style jacket entered the room: “You had a seizure. Seizure is the appropriate term for this event; your brain became overwhelmed and temporarily shut down. You are recovering from the seizure and will probably have no permanent damage. But we must address the question of what caused your seizure. I regret to tell you that we think the cause is a mass in your brain, which given your history is probably a melanoma tumor. Keep in mind that we now have several options to treat this and we need to collect more information to decide whether surgery, radiation, immune-therapy or a combination is best. It looks as though the tumor is accessible for surgical removal and we have an outstanding neuroscience department, and our chief surgeon is famous for his skill.”
I’m thinking, “this is beginning to sound like sales persuasion,” and said, ”thanks for the reassurance, but I’ve been preparing myself for this moment and I am not shocked by this news.”
I agreed to an Magneto Resonance Imaging (MRI) to provide a better image, and immediate IV medicines including anti-seizure medicine, steroids for brain swelling, and blood-pressure-reducing medicine.
As day 2 dawned, I was told to expect further procedures and denied eat or drink. I imagined being onboard a runaway train chosen for me by the luck-of-the-draw, scheduled to disembark at an operating room very soon. I was angry and longing for consultation with my trusted oncology team at Providence for help with treatment. With Eddy’s help, I rebelled and wrote an advanced directive stating that treatments at OHSU would be refused pending consultation from our Providence oncology team.
Staff on the NeuroScience floor in OHSU Kohler Hospital listened and responded with care, sustenance, and assistance in consulting with Doctors Page and Curti at Providence. By day’s end we had a firm recommendation to proceed with craniotomy to resect the tumor.
On day 3, I was wheeled to a Functional MRI machine and given tests that create a map of areas of my brain around the tumor to help guide the surgeon in resecting the tumor without damaging important brain functions. By this time, I was deep in doubt that major surgery was the best option for several reasons: Recent advances in stereotactic radiation and immune therapy are improving outcomes for melanoma patients with brain metastasis, my tumor is larger and probably more involved than I had suspected, and the list of dangers on the consent for surgery form starts with bleeding, continues with functional impairment and ends with coma and death.
As day 3 ended, timely visits from family, friends, and fellow cancer survivors brought me to mental and emotional exhaustion. I awakened to mental clarity after midnight. Eddy and I arose and walked the circuit on the floor explaining our thoughts and feelings of fear and frustration. About 3 AM, Eric, the night resident awakened us and offered to discuss the surgery consent form, if that would be helpful. Ready to proceed, we completed the form and slept.
On day 4 the operating room ensues.