Marlene’s condition gradually, inevitably, worsened. The tumour in her intestines may have been arrested but the damage had been done. Intestinal occlusion was the consequence. Our first episode was frightening, like a slow-motion train wreck; as we didn’t know what was happening, and neither apparently did the emergency crew at the Queensway-Carleton Hospital. Eventually she got medivacked to the specialty ward at the Ottawa General. After 10 days of prednisone and IV tubes she gradually got her feet under her again. Our oncologist reported, matter-of-factly, that this condition was not surprising, and cheerfully advised this sort of attack would likely happen again, may even be the cause of Marlene’s eventual death. The worry was that the weakened bowel could rupture and then she would be in serious difficulty with peritonitis and a compromised immune system. Marlene experienced five more episodes of these bowel occlusions over the next 18 months; off we would go to the hospital for treatment to relax the bowel and get things moving again.
As the months passed, I noticed that Marlene was beginning to experience cognitive difficulty. She would have trouble finding her words, she would forget why she had gone to the kitchen, she would gaze for minutes at a time, unfocused. She and I both chalked it up to classic symptoms of aging. I freely confessed I had some of the same symptoms, and likely I did. Stress can do that to you. But I decided Marlene’s pattern of symptoms needed to be reported to Dr. H.; he put it off to possible ‘chemo-brain’. This is a very common condition in medical oncology, especially with a constant course of chemo-therapy treatments, and Marlene had now been taking chemo of various sorts almost continuously for two and a half years. Dr. H. decided to ease back on her chemo regime and asked me to monitor her closely.
Her condition worsened however. She had a series of minor fender benders – close encounters with lampposts and curbs in parking lots – until finally I had to report this to Dr. H. too. Marlene glared at me as John asked Marlene not to drive anymore.
I found Marlene wandering at night. She would open the fridge door looking for a snack and leave the door open. Twice I awoke to the smell of smoke in the house – Marlene had put on the frying pan to make a grilled cheese sandwich and then gone back to bed, leaving the burner on. One night around 3:00 a.m. I stirred from a fitful sleep, followed the light downstairs to the family room, to find Marlene fully dressed for the day, watching TV.
“What are you doing Marlene?” I asked gently.
“I know I’m early but I’m waiting for my program to come on [The Young and The Restless]; and we have to go to my appointment.”
“Yes dear,” I replied tenderly, “but your appointment is not until tomorrow. And besides your program is not coming on until 4:00 this afternoon.”
She looked at me, puzzled.
“But it’s going to be 4:00 soon.”
“It’s 3:30 in the morning dear. You need to go back to bed.”
“Oh,” she replied, “Okay.”
As she climbed the stairs to return to her bedroom she remarked, “Why is it so dark outside?”
I almost cried at her obvious disability now.
But it wasn’t chemo-brain. Her conditioned worsened until finally a frightening incident with some sort to seizure brought us once again to Emergency at the General Hospital.
I was at lunch with a client, when I got a call from Marlene.
“I flushed the toilet and it won’t go down.”
“Is it overflowing?” I asked, alarmed.
“I don’t think so,” she replied.
“I’ll be home as soon as I can,” I said.
I gave a quick explanation to my lunch partner and raced home to find Marlene sitting in front of the TV. She looked dazed. I checked the toilet; there was a blockage, but it wasn’t overflowing. ‘I’ll have to get a plumber,’ I thought to myself.
“Have you eaten anything today?” I asked her.
“I don’t think so,” she replied.
I guided her into the kitchen and made her a sandwich. She took a few bites but then absently put it down.
“I don’t feel hungry.
“I want to go back to the family room,” she said.
She got up from the table and started to walk through the kitchen to the family room, but her leg buckled. I was able to catch her before she fell, then semi-carried her to the couch in the family room. Her right foot was awkwardly turned inward. I was worried now she might be having a stroke.
“Don’t move from the couch Marlene. I’m going to pack your overnight bag and take you to the hospital.”
Five minutes later I had thrown a few things into her bag – this had become routine after seven or eight previous trips – and struggled to get her into the front seat of the car. Her body was rigid now, and she resisted getting into the car, yet unable to speak. I had debated with myself calling an ambulance but I knew the protocol was to take her to the nearest hospital and what she needed was the acute care specialty floor for cancer patients at The General, not near-by Q-C H. I struggled with my impatience through the Friday afternoon rush hour traffic and made it to the hospital in about 30 minutes of eternity, forcing my way through a number of red lights on the way. By the time I reached the Emergency entrance Marlene was almost completely catatonic, rigidly resisting being moved. I struggled to get Marlene into a wheel chair, and she kept trying to get out of it.
We jumped the triage cue; the surprised triage nurse soon realized the urgency and ushered her straight through into the ICU. Staff swarmed around her to restrain her yet at the same time trying to figure out what was going on: was it stroke? drug overdose? meningitis? I suggested cerebral herpes virus – she had a cold sore on her lip.
Over the next 36 hours the staff finally got her back to an almost normal mental state – sedation and doses of the wonder steroid, dexamethasone, did the trick. On Monday she went for another MRI – CT Scans had revealed nothing, as usual. On Tuesday Marlene and I sat down with Dr. Horton and the resident oncologist.
“It’s the worst possible situation, Marlene,” he said. “You have leptomeningeal disease. It is very hard to see even now on the MRI images but there are shadows all through the meningeal lining of your brain. This inflammation puts pressure on your brain and impedes signals getting in and out through the lining. Evidently your cancer has migrated from your vertebrae to the myelin sheath of your spinal column and to the meningeal lining of your brain.”
“I’m sorry Marlene, this is fatal. We can relieve the pressure with the dexamethasone but you will experience serious side effects, mainly rapid deterioration of your muscle capacity.”
“Thank you, Dr. Horton,” she said, “you have been wonderful.”
After the conference I spoke separately to Dr. Horton and the Resident.
“How long does she have, please?”
‘Eight to twelve weeks,’ they said. ‘And the last few weeks she will be extremely limited.’
“We will arrange for a palliative care doctor for her,” said the Resident. “You should set up a ward room on the ground floor of your house as she soon won’t be able to manage stairs, but you should begin investigating hospice care.”
Five days later I took her home I even though we still hadn’t had our consultation with our new Palliative Care doctor. My spousal duties now included intensive care. All my other roles fell into the background. But through all of this I had put the finishing touches on my draft of The Hallelujah Chorus. It is a mystery to me today how I did it.