The Craziest Week of My Life - Diagnosis

I arrived at the urgent care facility on Sunday April 29th based on the advice of the on-call advice nurse and doctor following my fall and wave of nausea on Friday evening, April 27th. My 23 year old son drove me and listened carefully to the discharge instruction and things to watch for that would be presented later in the day. The doctor put me through some tests to check my balance, left/right strength, etc. One test in particular that I remember, involved me putting my arms out in front of me, hands palms up, and closing my eyes. When I opened my eyes, my left hand had turned palm down...I had not consciously done that. The doctor mentioned she did not know what was wrong, but she was concerned enough to schedule me for a head CT and MRI. The scans showed a mass on my right temporal lobe, measuring about 5-6 cm along its biggest dimension. The centerline of my brain was visibly curved and the left ventricle appeared to be compressed some. The doctor discharged me and explained to my son and me that the mass was in a seizurgenic (maybe seizurogenic) area of the brain, so we should be on the lookout for seizures, and for any recurrence of any of the other symptoms I had been experiencing.

The morning of Monday, April 30 started like a normal morning. While lying on the couch and drinking my morning cup of joe, my left hand and foot shook for about 20 seconds or so. I had no nausea or loss of consciousness, and I thought it was simply trying to drink from an awkward position. But my son saw me shaking and would not accept that as the reason. He told me I had just had a seizure and told me to get in the car. He took me to the ER and I was admitted. Based on the results of the scan and the seizure, I was held overnight for observation and quick action was taken to schedule me for consultations with a neurosurgeon and neuro-oncologist the next day. The night passed without incident and on Tuesday, May 1st, I was driven to the Neuro center where I had a higher resolution MRI done and met with the aforementioned doctors. The neurosurgeon explained that the tumor was located in an area he could access and that the size and location of it did explain my balance issues, episodes of deja vu, and the focal seizure I had the day before. He scheduled me for surgery on Thursday, May 3rd. My oncologist talked about potential treatment options if the pathology indicated it was cancerous. She also reminded me that I would see a lot of statistics and to try to think about the long tail of survival because I was in overall good health and that she has patients that have far outlasted the medians. Walking to lunch that day, I would take two steps and drift into my wife and then take two more and drift into my son. I pinballed my way to the deli, had a sandwich and then met with some of the administrative staff and left for home with many forms to fill out and a check in time of 6:30AM on Thursday, May 3rd for an 8:30 surgery.

When my son dropped me off at my apartment that day, I was reaching into the back of my car to get something and my left side started to shake. Seizure #2. Again, he took me to the hospital and I was held for observation before being transported to the neurology center via ambulance the next day, May 2nd.

On May 3rd, my neurosurgeon completed a successful resection of the tumor. He said he removed 95-98% of the tumor, which turns out to be a very good result. The way the tumor I had grown (and most, if not all, tumors of this type grow), there were fingers of the tumor growing into healthy brain tissue, making it impossible to remove the tumor fingers without also removing the healthy brain tissue. He used a few fasteners to connect the piece of skull he had to remove to access the tumor back to the remaining skul and used 52 staples to hold the skin together (my brother, who had flown in with my mom from Rhode Island, counted them for me).

My recovery went very well, my balance came back quickly, and I was soon doing laps around the recovery floor. On Sunday, May 6th, I was discharged without any orders for physical therapy or occupational therapy based on the results of the testing they did in the hospital.

On Monday, May 7th (if my memory serves me correctly), my oncologist called me with the preliminary diagnosis based on microscopic pathology and analysis of one genetic marker (IDH1). The surgeon had indeed removed a cancerous tumor, specifically a Glioblastoma Multiforme Grade 4. My IDH1 was negative, meaning it had been a very aggressive tumor that had grown quickly. So, there it was, I had just had a craniotomy to remove as much of a malignant brain tumor as possible. Fortunately, I did not have any impairments beyond needing the craniotomy to heal. But it could not be denied, I was now a brain cancer patient. A follow up appointment with my neurosurgeon and Neuro-oncologist was set for May 15th and I went about my days focused on caring for my incision, walking a bit more each day, showering myself and trying to carry out routine tasks around the house, including making meals for myself, etc.

Up next...Standard of Care, Reading, and Research

Soapbox #1

As my symptoms continued and the details in the following posts played out, I discovered the first important message I wanted to share along whatever journey I would end up taking. As colleagues and friends told me I had seemed “off”, was favoring my left side, and I was crashing into things inside my apartment that I had never even brushed against before, I thought “that was really deviant from my baseline existence up to that point”. And that is Soapbox #1 that I have stepped onto many times since: Know your personal baseline. If you diverge from it and things do not improve, check it out. And, do not assume you know what is going on with you. I was so convinced I had a sinus infection, I wouldn’t have listened to any other possibility. The sum of my experience and feedback and concern from my family, friends and colleagues, was completely lost on me. I heard what I wanted to hear. So, if you fall off track, be open to new possibilities. Also, please, know the baseline behavior and capacities of those you hold dear and/or interact with on a regular basis. Call them out on the change. Push them to get checked out, and if they report nothing was found and they remain off the rails, don’t stop pushing...push harder. I realize it is a delicate situation to tell a loved one, or a colleague or a leader in any organization that you are worried about them and then to stay on them until they have an answer as to why they are “off”. I had many excuses why I seemed “off” and I Appreciate everyone who did call me out. If they had pushed harder, I likely would have fallen back on my excuses. This may sound like I am blaming people around me for not pushing me. That is in no way the case.

Up next “The Craziest Week of my Life - Diagnosis”.

Onset

One night in March of 2018, I had a headache that made sleeping difficult. The next morning, I walked out to my car and thought, “Oh no, here we go again. I mis-timed starting my medications for seasonal allergies. The green film on the hood of my car satisfied me that the cause of the headache was clear. I’ve been a hay fever sufferer for decades, and over the years, have had my share of sinus infections and bronchitis. My family used to track me down in a store by listening for my incessant sneezing. Allergic Rhinitis appears on my list of ongoing conditions. More nights of headaches caused more nights of poor sleep and fatigue started taking its toll. I started to lose my balance from time to time, including a significantly high number of falls during a men’s hockey game in early April (I hadn’t fallen that much since I took up the game around age 6 in Rhode Island.) Looking back, I could have taken the fact that my teammates would not let me drive home as a significant sign. However, I had convinced my self that it was simply a worsening sinus infection that was possibly evolving into an inner ear issue. Through April, I became more and more anxious about the lack of sleep I was experiencing and the headaches and stumbles continued. My doctor and I tried different strategies to manage the anxiety, improve the sleep, and treat the symptoms of the sinus infection I remained convinced I had. I took time off from work to focus on getting better, but things seemed to have reached a steady state of discomfort. In the weeks that would follow, I would learn that at times I was noticeably favoring my left side and that some of my text messages and phone conversations had lost whatever sharpness they had had in the past. The month of April ended with one final fall to all fours and a feeling of extreme nausea, a symptom that my doctor had asked me about but had not appeared, until Friday the 27th. With a new symptom box being checked, and my doctor not being available until the next week, I called the advice nurse at the local urgent care/hospital, explained my symptoms, and I was scheduled to see a doctor on Sunday, April 29th. Next up, “Soapbox #1” and then “The craziest week of my life”.