Three Months from Hell
August 4th, 2024
I have suffered greatly over the last three months. Before interpreting what happened, I must walk you through my complicated chronology.
Tuesday, 2024-05-14: 2:00 AM
This was the event that I previously described here.
At 2:00 AM, I got up from bed to pee. I stepped across the threshold of the bathroom door; without any warning, the lingual and facial arteries serving my tongue hemorrhaged. My mouth immediately filled with blood; I was at significant risk of drowning in that blood.
An ambulance transported me to the Ottawa Civic Hospital ED. Early in the afternoon of Wednesday, 2024-05-15, interventional radiologists performed a procedure that stopped the bleeding. The interventional radiologists transferred me to the Hospital’s Surgical ICU. I remained there until I was discharged home on Friday, 2024-05-17.
Tuesday, 2024-06-11, 11:00 AM
I was at a routine appointment associated with the Phase 1 immunotherapy trial in which I am enrolled. An oncologist examined me; she was seeing me for the first time. This oncologist became concerned about my tongue and its dysfunction. She prescribed an excessively high dose of steroids.
Within two days—that is, by Thursday, 2024-06-13— I began experiencing severe insomnia and hypomania. These are recognized steroid side effects.
Mania is a persistent and pervasive elevated, expansive, or irritable mood. Hypomania is mania but less severe.
While manic, I wrote many pages of drafts for I Have Serious News posts. When I read them weeks later, the drafts were incoherent, and that was when they were even grammatical.
All my doctors agreed that we should reduce the steroid dose. Unfortunately, it is dangerous to reduce steroids too rapidly. The best we could do was to taper the dose slowly.
Wednesday 2024-06-26, 11:30 PM; and the following nights
My thoughts raced in hypomania. I slept only a few hours a night.
Saturday 2024-06-29 11:30 PM; and the following nights
I was fully manic, and I couldn’t sleep. I began to experience delusions.
Sunday 2024-07-07 3:00 AM
I’ve always been able to pee without significant problems.
But suddenly, I began to experience urinary urgency every 15-20 minutes. When I attempted to pee, I could produce only a few ml of urine, even though about 150 ml of urine remained unreleased in my bladder. I was still manic, and I couldn’t sleep. Because I had not slept for at least 36 hours, Kathi drove me to the Ottawa Civic Hospital ED.
After some examinations, an ED nurse installed a Foley catheter. A Foley is a flexible tube inserted into your bladder through your urethra. Your urine drains through the tube into a large (2-4L) urinary drainage bag—in effect, an artificial bladder--that you carry around with you. The ED doctors tell us the Foley must be removed in 48 hours. They discharged me home at 4:00 PM.
.
Tuesday 2024-07-09 11:00 AM
I was at The Ottawa Hospital Cancer Centre for a routine follow-up appointment for the Phase 1 clinical trial. My delirium has cleared, but I remain manic. For the first time in my life, I experienced a seizure. I was transported on a stretcher to the Ottawa Hospital ED. There, I had another seizure, although I have no memory of it.
I woke from the second seizure at about 4:00 PM. The Foley catheter was removed as planned. I was still manic; my brain was exhausted. The ED doctors discharged me home at 8:00 PM.
Sunday 2024-07-14 10:00 PM
Without the Foley catheter, my urinary symptoms returned. I experienced an urgency to urinate every 15 minutes, but I produced little to no urine. As a result, I was unable to sleep. We drove to the ED again. After some tests, a new Foley was inserted. I was discharged home on Monday morning, 2024-07-15.
Tuesday, 2024-07-16 3:30 PM
Our children, Jeff and Karen, have come from the States to visit and help Kathi. Kathi spent the morning and early afternoon trying to catch up on her hospital work. I was thrilled to see the children and became excited as we discussed America’s complex, rapidly evolving, and distressing state.
I fell quickly into a full-blown manic state and spoke rapidly to Jeff and Karen. I began to worry that Jeff, a Pro-Choice activist, would take excessive risks by participating in protests against the US Supreme Court’s overturning of the Roe v. Wade decision. My fears rested on delusional thinking, but I expressed them with increasing emotional intensity.
At about 3:30 PM, I experienced another seizure. I was entirely unable to communicate; this terrified me. Kathi drove me to the Ottawa Civic Hospital ED, where I had another seizure while I was in the triage unit of the ED. When I could communicate at all, I was floridly manic, angry, and terrified.
I was admitted to the ED’s Observation unit. There, I experienced 4 additional seizures in about half an hour, and each terrified me more than the previous one.
Finally, I received intravenous anti-convulsant medications and promptly fell asleep. The following day—Wednesday, 2024-07-17—I was admitted to the hospital’s neurology service. I was hospitalized there until late Thursday afternoon, 2024-07-18, when I was discharged, still manic, but with my fear and anger under better control.
To this day (I am writing on Sunday afternoon, 2024-08-04), I remain fearful of falling asleep. Nocturnal seizures are common. Will I fall asleep, go into a seizure, and never return to sanity? Because of this fear, I often pull myself back just as I am about to fall asleep. However, there is a problem with this strategy: insufficient sleep is the primary risk factor for seizures. The best I can do is take a sedative at night and hope for a few hours of uninterrupted sleep.
Saturday 2024-07-20: 2:00 PM
On this Saturday afternoon, I began experiencing acute shortness of breath, with some belly and chest pain. I became pale and started sweating profusely. My wife called an ambulance, which transported me to the Ottawa Hospital’s ED.
The ED doctors ruled out a myocardial infarction (heart attack) or a pulmonary embolism (a blockage-causing piece of material inside a blood vessel in my lung). They confirmed that I had aspiration pneumonia, a lung infection caused by the inhalation of food, saliva, liquids, or vomit that should have been swallowed into the esophagus.
It’s a near certainty that a tongue cancer patient like me will contract aspiration pneumonia because we can barely swallow anything without coughing or choking.
The ED docs gave me an IV dose of antibiotics, and they discharged me home on Sunday morning, 2024-07-21, at 5:00 AM.
Sunday, 2024-08-04 1:30 PM
I count 6 ED admissions in the chronology above. The seizures were the worst; perhaps because I have a high pain tolerance, my suffering from the terror induced by the seizures was greater than anything I had ever experienced before.
But it has now been 15 days since I have had to receive care in an ED. It’s tempting to say that I am ‘recovering,’ but I do not believe that is true. Instead, I have told people that I am convalescing.’
Recovering is the process of getting better: resolving the acute phase of the illness, steady improvement in symptoms, and a complete return to normal functioning.
Convalescing is the rest and rehabilitation following an illness’s acute phase. You can convalesce without expecting that my normal functioning will ever be restored. That’s where we are now. Things will improve if I rest quietly and follow all my good routines. But my health will never return to where it was three months ago.
Full recovery seems unlikely. Moreover, Kathi and I are clearly living on thin ice. We do not know when a small crack will suddenly open beneath us, and we will, once again, fall through the floor of the world.
The oncologists running the Phase 1 immunotherapy trial have paused my participation, but that doesn’t mean they have dropped me from the trial. They hope to run some tests that may confirm whether the investigational drug caused any of the above chaos.
Kathi and I fully endorse the trial oncologists’ decision. I don’t want to go through all this again. Bob Dylan:
Here I sit so patiently, waiting to find out what price You have to pay to get out of going through all these things twice.
“Memphis Blues Again”
I am writing this on a Sunday. For weeks, I have told myself that if I just got enough sleep, I would have the stamina to attend the 10:30 AM Sung Eucharist at Christ Church Cathedral, my home parish. But I’ve never made it.
Today, I accepted that I would not be able to attend church. Instead, a priest—the Vicar of the Cathedral—brought consecrated host and wine to our house, and Kathi and I finally received the Eucharist.
Eucharist comes from the Greek eucharistia, and it means ‘thanksgiving.” And, so, we remain, giving thanks.
Bill, giving us a window into your suffering is an act of grace. You're accepting us voluntarily and unconditionally into your world, whether we deserve it or not. Because dying almost always happens behind closed doors in our society, few people ever get to witness what you're going through. Thus they're unprepared when and if disaster strikes in their own lives. I can't speak for the many people who must feel grateful for your profound courage and generosity. I just want to thank you from the bottom of my own heart.
Bill, you are a truly amazing person as well as a writer! You walked your readers carefully and chronologically through three months of immense suffering (and disturbing artwork) without whining, ranting, blaming or self-pity. After going into the depths of human brokenness, you lifted me up with colourful cut-glass beauty and sharing the Eucharist with Kathi. Your double thanksgiving is both a gracious gift and challenge to those of us on the other side of the page: How will we respond to the difficulties in our own lives?
I will continue to pray for you, especially healing sleep (like Lord Rhoop in "The Voyage of the Dawn Treader"), protection from the unknown and blessings in the days ahead.