You could not make this up....

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July 6, 2017 - Wilmot, New Hampshire

I had just woken in a Las Vegas hospital with an ER physician telling me he had “good news and bad news”. The bad news was that they had found the reason for the seizure: a small, walnut-shaped tumor near the left frontal lobe of my brain. The good news was that it appeared to be relatively benign, which would need to be confirmed by an MRI and biopsy. A Brain Tumor … In over 30 years as a retail pharmacist in excellent health, I had never missed a day of work due to illness, and never had any CNS symptoms like headaches or anything. How could I have a brain tumor??? I had been hiking earlier in the afternoon with my fiancé, Susan, and soon-to-be father-in-law Ken in Death Valley National Park. I had fallen about a mile up the Golden Canyon trail after my entire right side “collapsed” under me. Dazed, cut, and scratched, I had eventually struggled to my feet and started walking out of the canyon with Ken hanging on to me. Susan had run back for the car and her cell phone only to find it useless (no coverage) and instead drove 10 miles back to the ranger station for help. She and a ranger had just driven up when we emerged. I didn’t know it then, but I had just had a focal seizure triggered by the tumor. After the ranger examined me, we all agreed that I was dazed and a little weak but otherwise uninjured from the fall. His best guess was dehydration, a fairly common event for park visitors unaccustomed to the harsh climate. We returned to Furnace Creek Ranch and I took a shower and had just started to get dressed when Susan asked me how I felt.. I was still a little weak and feeling dazed. I tried to respond but no words would come out; the only sound I could make was stuttering gibberish. I literally could not speak. She turned white but started asking simple yes-or-no questions which I could answer by shaking my head. Terrified by the prospects of some serious neurological problem, she got the rangers back on the scene and it was decided to call for a helicopter to transport me to Sunrise Hospital in Las Vegas. While waiting for the Med-Evac unit that was dispatched from Mojave Airbase, some 80 miles away, I became aware that the skies were darkening. What time could it be? The rangers had me strapped to a stretcher in the back of an ambulance. Susan and I could hear the rangers’ conversation. A freak thunderstorm was bearing down on Furnace Creek with high winds and heavy downpours. One of the rangers, Charlie, came over to the ambulance and told us that the helicopter was about 2 minutes out but the storm was complicating matters. They would need to get me secured in the helicopter in less than 3 minutes or they would not be able to take off safely until the storm passed. In the next few minutes time, I came to the conclusion that I had had a seizure in the canyon which had now recurred but, without intelligible speech, I was unable to relate to the EMTs on scene. Finally, the helicopter landed and a huge guy with an American flag wrapped around his head in a Rambo-style bandana, sprinted over and made the stretcher transfer all by himself. Another EMT from the Med-Evac team got what information the rangers had, which wasn’t much, and I became aware of the copter blades going faster and faster. The pilot quickly wrestled it into the air and the last thing I remember seeing was a lightning strike across the valley. At the same moment, I finally blurted out “I th-th-think I’m ha-ha-having a s-s-seizure” and then I blacked out. I had gone into a full grand mal seizure with the helicopter buffeting like a twig in a windstorm…. Saturday night at Sunrise Hospital in Las Vegas. The nearest to the “Las Vegas Strip”, it also had a neurological ICU. Unbeknownst to me, Susan and Ken had been detoured out of Death Valley via the northernmost entrance through Beatty, NV. The thunderstorm had washed out several roads around Furnace Creek. What was normally a routine 2-hour drive to Las Vegas turned into 5 hours of white-knuckle detouring around bad weather, compounded by a wrong turn onto route 95N towards Reno instead of 95S towards Vegas. Just south of the infamous “area 51”, Susan had regained cell coverage and called Sunrise Hospital to check on me. The Med-Evac team had told her where I was headed, and an unidentified emergency room spokesperson told her that “I was doing pretty well considering I’d just been told I had a brain tumor” when the line went dead. The battery in her cell phone had died.... At least they knew I was alive and conscious. I had finally opened my eyes in the hospital to find a very tired-looking intern or resident standing over me. After a few minutes had passed, he explained that I had indeed had a seizure and I’d already had several tests including a CAT scan of my head. The CAT scan showed the cause of the seizure – a brain tumor about the size of a walnut. A neuro-oncologist and a surgeon were going to come in first thing in the morning to do an evaluation and talk to me. It became clear that although I had been stabilized for the moment, I wasn’t going anywhere for a few days. By the time Susan and Ken arrived at the hospital it was after 10pm. Saturday night in Las Vegas is also the busiest on a “normal” weekend and this weekend featured several major events. In a panic over the deteriorating weather, they had left Death Valley with only the clothes they were wearing, both of them now needing showers and some rest. Plans were made to head back to Death Valley early in the morning to retrieve luggage and check out. After about ten phone calls to nearby hotels which were all sold out, a sympathetic manager suggested they call the Four Seasons, the newest luxury hotel just adjacent to Mandalay Bay. Yes, they had a double room! The price for the room was $458 per night! They got directions and wearily headed out. Upon arriving at the Four Seasons, they checked in (with no luggage) and were politely asked, “would you like one bed or two”? This produced the only briefly comic moment of the day when Susan exclaimed loudly for all in the vicinity to hear, “Two, please, THIS IS MY FATHER”. By the time they returned from Furnace Creek, it was late afternoon. I had already had an early morning MRI and talked with both doctors. They had suggested that I at least have the biopsy done there as I was already in the neurology ICU. I called an MD friend back in NH and he confirmed that was the most reasonable course. Depending on the outcome, I would at least have the best information available. Susan and Ken had made reservations for Sunday through at least Weds at the Las Vegas Hilton which was the nearest hotel to the hospital and where, coincidentally, I had stayed a number of times. They left in the early evening to get a good night’s sleep. Even heavily medicated, I didn’t get a lot of sleep – the biopsy was scheduled for 6 am and involved drilling a small hole through my skull and inserting a needle into my brain and withdrawing a sample of tissue from the tumor. My head had to be fitted to a metal frame which would ensure my skull remained stationary throughout the procedure, I was to be given fentanyl which meant I would be “awake” the entire time. All I would remember from the biopsy was hearing the sound of a drill and intense pressure from the set screws that served as fasteners for the metal frame. Oh, yes, and a horrible headache that didn’t occur until 4 days later when I was finally home... The MRI and biopsy confirmed what the initial CAT scan had shown. A small walnut-shaped tumor near the midline of the left frontal lobe of my brain. It was just starting to infiltrate the surrounding tissue, a bad sign although it was clearly a slow-growing tumor. They advised against surgical removal and suggested targeted radiation treatment (gamma knife). I was discharged with copies of all my records and I returned to NH with Susan after 2 more days in the hospital. Ken had already returned to NH. Why the extra two days?? Saturday night, I had been admitted unconscious and was catheterized in the emergency room per standard practice. If you are not familiar with the procedure, it involves insertion of a sterile rubber catheter up the urethra (in the penis) into the bladder. Once it is in the bladder, a small bulb is inflated to secure and seal it inside the bladder. The person who performed the procedure hadn’t inserted it far enough so when they inflated the bulb it was still in my urethra, not the bladder. Unconscious, it was irrelevant, but when I had started to come around, it caused me such intense pain that I literally RIPPED it out. My urethra had been damaged, and until I was passing urine free of blood, I wasn’t going anywhere. I stayed in the hospital for 2 more days….. The consensus in Las Vegas was that the tumor was too close to vital areas of the brain for surgery. They advised me to have radiation and chemotherapy. As a pharmacist, I wanted nothing to do with either treatment. I was also evaluated at the Brain Tumor Center at MGH in Boston and given another option; detailed MRI studies showed the tumor was just starting to infiltrate surrounding tissue but it was self-contained enough to risk surgery. I would probably need a week or so of inpatient rehabilitation. Susan and I had long and emotional conversations about it, and we decided to have surgery to remove the tumor on June 8, 2005. We finally married on May 15th after consulting with my family lawyer and drafting a will and DPOA (durable power of attorney) for health care decisions. All went as planned, but took longer than the surgical team had thought it would. There was a lot of swelling which they tried to control with an extra week of high-dose steroids. I was mentally prepared for less than a week in inpatient rehabilitation and instead needed six weeks. I was discharged via wheelchair in early August, my right foot and ankle paralyzed and experiencing minimal left-right coordination. I could walk with assistance, but not very well. That was almost 12 years ago and my recovery continues to this day. I returned to work six months to the day from the initial seizure at my previous employer. I started out slow, working the evening shifts but never more than 12-15 hours a week. Plagued by balance issues and an unsteady gait, I fatigued after even the short shifts so I finally had to go on disability in 2008. Now, my residual physical defects include impaired left-right coordination, partial paralysis (right foot & ankle) resulting in an awkward gait and a lot of secondary joint damage. I missed working, and started back one afternoon a week at a small local store in 2010. My speech and communication skills improved with time and I resurrected a course for Pharmacy Technicians that I developed and taught from 1999-2001, and I really enjoyed it. My most recent class ended in 2013. I still return to Boston once a year for a check-up. My last visit was the first without requiring an pre-appointment MRI (every 2 years now) and there have not been any changes in the scans. I fully retired in 2014 after 40 years as a retail pharmacist.