October – wee hours of November 13th 2013
The window procedure was done on October 2 and JD was sent home on supplemental oxygen as his lungs continued to deteriorate. The respirologist, Dr. Chernish, gave us a differential diagnosis consisting of 4 possibilities for his downward slide: infection, allergic reaction to the crizotinib, crizotinib no longer working, or something called lymphangitic carcinomatosis…meaning the cancer now spreading throughout the lymphatic system in the lungs.
On October 15, we went back to Princess Margaret for repeat CT scans and to see Dr. Leighl. She concurred with Dr. Chernish’s assessment and she felt it was most likely an allergic reaction to the crizotinib. Plans were to be made for JD to have a bronchoscopy done locally to rule out the possibilities of infection or the lymphangitic cancer.
Dr. Chernish was out of town for a few weeks so the bronchoscopy could not be arranged until November 12th. JD wasn’t concerned. We had an in-residency week booked in Toronto for one of our graduate school courses at the end of October and he didn’t want yet another procedure to interfere with his quest to obtain his MBA. Yes, throughout all of this JD insisted we keep taking our online courses, so the cancer wouldn’t “win”, in this regard.
However, I was getting quite concerned. I could see that JD’s deterioration was now happening at breakneck speed. He had lost a lot of weight over the course of the year, and now he was sublimating like a snowman in the March sun. He needed oxygen constantly and he was getting weaker. My formerly tall, muscular, indefatigable husband was now shrunken, bony and frail. He steadfastly refused to let me take him to the hospital, saying he didn’t want to spend another 9 hours in Emergency only to be told he needed more tests. My mother said I might just have to wait until he collapsed in order to seek medical attention for JD.
His nail beds on his right hand and foot were turning purple. His lower limbs and feet were swelling again. His temperature was below normal when he wasn’t feeling feverish. His favourite foods tasted strange to him. All of these things set off alarm bells for me and I wondered if JD was in the process of actively dying. I knew from the experience of Auntie Hazel’s death, that dying can take place over several days or weeks.
The night before the bronchoscopy JD was working hard to complete a 3,000 word assignment for which he had been granted an extension. At 3 a.m. on November 12, he was still working away at the computer when suddenly he was sweating profusely and experiencing intense abdominal pain.
By 8 a.m. I had him finally convinced to go to the hospital and be seen (and cancel the noon-hour bronchoscopy). He was immediately taken into the Acute Care part of Emergency and given a private room. Morphine was administered for the pain. A chest x-ray and CT scan were performed. We were surprised when the Emerg doc told us that the pericardium was once again swollen with fluid. Why hadn’t the pericardial window worked???
The evening of the 12th JD was admitted to the chest unit, to await the drainage procedure to take place the next day. We set up the laptop, and JD continued to work on his assignment, finally happy enough with it to send it off electronically, at 12:17 a.m. on November 13th. I did a few posts for the discussion board for my course then settled JD down for what was left of the night. As I was leaving I noticed JD’s smell had changed. I could catch a faint whiff of this sickly sweet aroma I had only ever sniffed once before, when my first husband’s dad lay dying from emphysema in the ICU. It’s a smell you will never ever forget – another sign that I filed in the back of my mind to deal with later, per Scarlett O’Hara. I left the hospital at 2:30 a.m.
