I (hope i never) CU (again)
I have been terrible about keeping this blog updated lately, especially during the past couple weeks of dramatic turns and big developments in my medical situation — including another brain surgery and an eight-day hospital stay, with six of those days immobilized in a bed in an intensive care unit. My apologies to all of you who have checked in hoping to find news about me, only to find nothing. My thanks to all of you who have e-mailed me directly to express concern. I hope this post answers all the questions you have.
On the morning of Wednesday, October 20, I went to Orlando Regional Medical Center for what I thought would be just another routine MRI scan of my brain. I fully expected the news to be as good as the news from my last scan on August 30, because in the interim I had completed four more two-week cycles of the powerful chemotherapy treatments that had already produced such excellent results in the earlier scan.
Though the scan, itself, was in the morning, my appointment to go over the results with my neuro-oncologist would not be until 3 p.m. the same day. My sister Kathleen had flown into town to be with me on this day, and we were hoping for more great news. Little did I know how incredibly lucky I would be to have her by my side for the most difficult, mentally challenging eight days of my life.
The doctor was running a bit late, so we didn’t get into see him in the clinic until 4 p.m. He announced immediately that the scan showed the chemo was still working wonders on the cancer. The disease was showing no signs of progession, and the brain tumor was continuing to disappear. Kathleen and I had about five seconds to savor that good news before the doctor hit us with this: The fluid collection around my brain had continued to worsen, was reaching dangerous levels and I would need to be admitted to the hospital immediately so that the problem could be dealt with directly. Immediately, as in “tonight.” And “dealt with directly” as in “surgery.”
We rushed home to await a call from the hospital telling us exactly what time a bed would be ready for me. I was to report in at 8 p.m. for the night, giving me just three hours to pack an overnight bag, say goodbye to my two dogs and get back to the hospital. I was told to expect a surgery to drain the fluid to be scheduled sometime the next day (Thursday). In my mind, I was thinking the surgery would amount to no more than a “drill- a -hole-insert-a-hose” operation to siphon the excess fluid away. But Thursday morning, when my neurosurgeon came in to brief me, I learned that it would actually be much more complicated. I was headed that afternoon for for my third “craniotomy” — a procedure that involves cutting away a disc of bone from the skull to allow the surgeon complete access to what’s inside. Once inside, the neurosurgeon would clean up the mess and implant an outlet that would allow fluid to continue to drain even after the surgery was over. The surgical consent papers that I signed said the purpose of the operation was not just to remove fluid, but to “evacuate a subdural hematoma” — which typically refers to trapped blood clots or small hemorrhages. The papers said the risks of the operation included “stroke”, “coma” or “death”. I asked the nurse awaiting my signature whether the “coma” package included meals, and she laughed and told me not to be so morbid. So I just signed the damn thing.
The surgery went well. When I woke up, I found myself in a “recovery room” surrounded by dozens of other patients in beds partitioned by curtains. The drainage tube coming out of the back of my head led to a reservoir where the fluid could be collected for later analysis. To keep the drain flowing I was ordered to remain flat on my back and not allowed to tilt my head up even an inch off the pillow to look around or take a sip of water. Try taking a sip of water through a straw while laying flat on your back on the floor with the back of your head touching the floor and you’ll understand a lot about what my next week in intensive care was like. Next, try sipping hot soup from a bowl that way — or chewing and swallowing cubes of cold Jell-O. (Please do not attempt without someone right there to keep you from choking).
The absolute worst part of intensive care was the waiting. Kathleen and I were constantly waiting for word from the docs on what was supposed to happen next. I had naively hoped that I might be released to go home as early as Saturday or Sunday — but there was no way I’d be getting out that soon. The docs wanted to monitor the drainage for several days, and each morning I was awakened at 4 a.m. to be wheeled down for a CT-Scan of my head to give them an update on how things were going. The good news was that the golden-hued cerebral spinal fluid was draining. The bad news was that it kept coming back (all of our bodies naturally produce several milliliters of the stuff each day.) Even worse for me, my fluid had a thicker consistency that sometimes clogged up the drain tube. This discovery unnerved the doctors because it meant they might not have the option of installing a permanent “shunt” which would be a longer tube that would redirect excess fluid from my head all the way down to my abdominal cavity, where it could be absorbed. Saturday, Sunday and Monday all came and went — with us not knowing whether that type of operation, or some other fate, awaited me.
The clock on the wall in my ICU room became my worst enemy. In my restrained position, when I got tired of staring at the same acoustic ceiling tile, the clock dominated my field of vision and was a constant reminder of how tedious these days were. I’d watch the clock’s small hand jackhammer its way through each one-hour interval as if it were a bent, shrimp-cocktail fork chipping its way through successive, one-inch thick slabs of marble or granite. I had only to watch that process 24 times, and it meant I had another day under my belt and was another day closer to going home.
The quality of nursing care I received in ICU was incredible. Some of the wonderful nurses were familiar to me from my previous hospital stays. And having my sister there by my side to help me eat and do hourly breathing exercises was something I will never be able to properly repay her for. Some days Kathleen spent 10-12 hours with me there at the hospital, taking breaks only to run home to eat, sleep or tend to my dogs.
Some nights, the medical strain, uncertainty, unvarying white noise and overall tedium of the situation in ICU came close to pushing me over the edge. On Sunday and Monday nights — in the middle of the night — I awakened from dreams so vivid they left me disoriented about who I was and why I was there. I felt like I was actually losing my mind. One night I called my sister Ellen on the West Coast to help me talk my way back to reality, and another night I called Kathleen so she could assure me that the room I was in was indeed the same room I had been in for four days. Late Monday night, I woke up from a sound sleep while my neurosurgeon was checking on me at the end of his late rounds — at about midnight. But instead of engaging in the actual conversation that was going on in reality, I could not shake myself from the alternate reaility of a dream that the doctor was not talking to me in my ICU room, but instead was addressing the complexities of my case in front of an amphitheater full of medical students arranged around a floodlit stage that was centered upon my bed. My nurses and doctors explained that this degree of disorientation is not unusual for patients spending long stretches in ICU. In fact, there’s even a clinical name for it: “Intensive Care Unit Psychosis.” I Googled it and found this definition: “A disorder in which patients in an intensive care unit (ICU) or a similar hospital setting may experience anxiety, become paranoid, hear voices, see things that are not there, become severely disoriented in time and place, become very agitated, even violent, etc. The condition has been formally defined as “acute brain syndrome involving impaired intellectual functioning which occurs in patients who are being treated within a critical care unit.”
I don’t want to embrace the whole “psychosis” thing, but I guess things could have been much worse for me. I could have been in the coma that I signed up for. Or I could have been in an ICU room in a hospital in Islamabad (pictured at top) instead of in a non-flooded country with the most advanced health-care system in the world.
I don’t know how many more of those weird dreams I could have tolerated. Luckily for me, my ordeal was almost over. On Tuesday, the doctor entered my room to announce his plan was to remove the drain plug from my brain immediately and just keep a close eye on things to see if I might heal naturally as pressure in my head built to a level of equilibrium that would either A) allow no more fluid to collect there B) Force the fluid to return to natural circulation patterns or C) force my brain tissue to shift and fill in the cavity where the harmful fluid had been accumulating.
I was totally on board with that plan, especially because it put an end to my hospital stay in sight and meant I would be moved out of the ICU and up to a regular room on the eighth-floor of the hospital in time to watch Game One of the World Series on Wednesday night.
On the morning of Thursday, October 28 I was discharged from the hospital. Kathleen and my brother, Brian, drove me home and took care of me for most of the next week, along with Dave Noland, my childhood buddy from Kansas City. I am feeling a bit tired and dealing with occasional headaches, but otherwise am resting comfortably at home and doing my best to take care of myself and my noggin while watching plenty of football and Magic basketball. The doctors are continuing to monitor my progress with regular CT scans of my head. We will also continue to fight the brain cancer with chemotherapy, although it has not yet been determined when those treatments will resume.
So…there’s my big update after all this silence. I apologize for going over 140 characters to explain it all.
COMING NEXT: A stunning gift arrives on my front porch.