November 13 – 14, 2013

One thing about being in ICU – there is always a nurse only a couple of steps away. After informing her of JD’s decision not to take the life support option, the nurse told me that JD’s blood pressure was being artificially maintained with medication and that this would continue, but no additional measures would take place. When he was ready for it, they would administer a sedative, to put him under. This would calm his breathing down and he would be able to be taken off of the noisy CPAP machine and have a smaller oxygen mask. I didn’t ask what would happen after that. I didn’t have to.

I relayed this to JD and he agreed to wait until his dad and sister came to see him. Time passed. Mom returned to the room. We took turns rubbing his feet, holding his hands, and placing cool cloths on his forehead and chest at his request. He was not allowed to drink anything (for fear of aspiration), but could suck on ice chips. He also wanted to sit up – also not allowed due to the recent angiogram.

After what seemed like an eternity, his dad and sister and her husband entered the ICU. JD’s first words were to tell them he loved them. He half-asked, half-mimed that he wanted his dad to hit a golf ball for him, in his memory. Then he wanted us to join hands together with him and recite the Lord’s Prayer, which we did.

JD’s dad did not seem to want to grasp the reality of the situation. Fight son! Don’t give up, he urged. The pastor was visibly upset. She and my mother went into the hallway. Mom told me later the pastor was ready to take his dad aside and tell him it was unfair to ask JD to keep fighting – JD needed to be allowed to die with peace. We had to let him go. Luckily, his dad calmed down and JD seemed to be paying him no mind.

Kiss me, kiss me! JD gasped. He removed his mask and we kissed each other on the lips, for the first time in months. (We had abstained from this intimacy for fear that I could give him a respiratory infection that could finish him off.)

Then he told us, Mom is here with me now. I am not afraid. I am ready to go. I love you all. Then he did something extraordinary.

He ripped his mask off of his face and threw it off the bed. Then he shouted, I am ready to go. Why am I still here?!

Handsome! I pleaded. It doesn’t work that way. Let me get the nurse. Please put your mask back on!

The nurse appeared with the medication. She injected it into JD’s IV port and he closed his eyes for the last time. His breathing calmed and the smaller oxygen mask was placed over his nose and mouth.

The next 5 hours were spent talking quietly around JD’s ICU bed, holding his hands and rubbing his feet. We all watched the monitors as the numbers decreased slowly, incrementally signalling the waning of his life. More visitors arrived: the rest of the wedding party of our 2010 nuptials, my kids from my first marriage…the nurses brought chairs for everyone.

At times I felt like I was hostessing this weird pre-funeral as I tried to engage everyone in turn, in conversation. JD’s dad was taking it particularly hard. He repeatedly asked me what they were giving JD to fight the cancer. I had to repeatedly tell him that the time for anti-cancer drugs and fighting was over.

I wasn’t sure how I felt about all of this. Shouldn’t I be focusing solely on my husband? In the end though, I think it was what I was meant to do.

At 12:18 am on Thursday, November 14, 2013 JD took his last breath. After everyone left the room, I asked the nurse for some washcloths so I could wash my husband and say goodbye to him privately before they took him away. I carefully wiped down his still warm face, hands, chest and feet, avoiding all of the tubes still left in him and hooked up to various machines and monitors. Then I left him in the loving care of the ICU nurses and went home, to spend my first night as a widow with my mother.

 

November 13 – 14, 2013

Back in the ICU

Dr. Chernish bent close to JD so he could hear him over the noise of the machine assisting his breathing. He basically repeated all that was said to me in the consulting room.

You are out of options. Even if I had some new miracle anti-cancer drug to give to you, I wouldn’t be able to do it. You are too weak. You want life support but you will likely die as we put you on it. You have fought a tremendous fight but now it is over.

JD’s first words to me after Dr. C left were I want to go on life support.

My first words back to him were Handsome, if that is what you want done, then that is what we are going to do.

Next came the following, half-gasped, half-mimed: Will I be able to write notes while on life support? I said I didn’t know but would ask the nurse.

No, said the nurse. When you are on life support you are kept unconscious the whole time, and you don’t regain consciousness, ever. Oh, I said. I didn’t know that.

I relayed this information to my husband. Oh, he said, I didn’t know that. I said me either. We need to talk, he said. I asked my mom and the pastor to leave us for a few moments.

Get a paper and pen, said my husband. Now write this down and leave spaces for notes: Plan A, Plan B, Plan C. I did so. What is Plan A? I asked, pen poised to attack the paper.

Stay as is.

Plan B?

Go on life support.

Plan C?

I don’t know yet.

This was my moment. Don’t ask me where I got the strength or the words, but I put down the pen, grabbed his hand, and this is what I said.

Well Handsome, I have been thinking a bit about Plan C, and I think it has some good points to it. With Plan C you will be able to be with your mom again, and your Auntie Hazel and your grandparents. You will no longer be struggling to breathe. And, for you it won’t seem like very long until we are together again.

Yes. Plan C is the one, came the instant reply.

OK, I said. Let me talk to the nurse and find out what happens next.

November 13 – 14, 2013

Waiting

I can’t even remember now what the pastor and I talked about while we waited. Less than half an hour had passed and then a nurse came to see me and told me the procedure went well – there was no arterial damage. JD was back in the ICU and someone would come to take me to see him when he was settled in.

The pastor left at my urging and I decided to try my luck at one of the other waiting rooms across the hall, hoping to find one that was empty. I really needed some quiet space to process all that was happening and hopefully stop my brain from whirling quite so much.

Initially I was lucky. I turned off the fluorescent lights in the room and sat, in the far corner by a window that looked onto a pebbled roof and the exterior portion of the hospital’s HVAC system, on the fake leather and chrome settee. By now it must have been about 3 pm.

It only took a couple of minutes before my sanctuary was invaded by an excited and loud trio of Portuguese-speaking women, one of whom who immediately fired all the lights back on and then smiled at me (in apology?) once I was noticed in the corner.

I grabbed my coat, laptop bag and purse, and went in search of quiet. None was to be found on the floor and back I went, to my original corner, and inserted my ear buds to drown out the non-stop chatter of the women. I found Leonard Cohen’s Live in London on my phone’s play list and tried to read something since any kind of thinking was now out of the question. Within the first couple of songs, I was nodding off. Exhaustion had finally caught up with me.

A part of my brain that was still awake registered someone standing in the doorway of the waiting room. It was one of JD’s doctors – Dr. Chernish, the respirologist. I shook my head vigorously in an attempt to wake up the rest of my brain as he led me away to a private consultation room. God, this cannot be good news is what I remember thinking.

We have to talk about life support, is how he started the conversation. Things are not going well. We are out of options for JD, he continued. JD, being the fighter that you and I know he is, wants life support but ultimately the decision is yours and if it was my family member I wouldn’t do it. You will only be making it harder for yourself later, when you have to remove the life support. There is also a strong likelihood JD will not even survive the transition to life support.

These are the highlights of what this man said to me.

My brain went into hyper-practical mode almost immediately, and I told the doctor I had to alert the family. I dialled JD’s sister at her home in Mississauga. Drop everything and get in your car now, I said. Pick up your dad and come to the ICU at the hospital. Things are bad.

Then I called my mom and fell apart, bawling that I had to decide on whether or not to put JD on life support. Luckily she was in town visiting my stepdad’s son, and only 5 minutes from the hospital. She was coming as quickly as she could.

I put myself back together and turned back to face the doctor. OK, I said to Dr. Chernish. I want to uphold JD’s wishes but I understand what you are saying. Can I see him now?

November 13 – 14, 2013

6th Floor – Chest Unit

At 8 a.m. my cell phone rang, waking me up. It was the hospitalist, wanting to discuss JD’s (poor) condition with me. He said he was calling in a “stomach guy” to see JD about the abdominal pain and that the CT scan showed that the cancer was now in the bones as well. Damn. Again, I kept thinking that JD was probably actively dying, yet the hospitalist wanted to keep doing all of these things. It didn’t make sense to me. How could I be right on this when those that should know kept suggesting more invasive procedures to be done?

I showered and got ready to leave for the hospital. JD called to remind me to bring the laptop, so he could do some more homework after his pericardial drainage.

When I got to the hospital, I was shocked to see the change in JD’s condition. He had gone from needing 5 litres of oxygen to 15, and his breathing was quite laboured. A couple of nurses came to administer a nasal tube to pump JD’s stomach, to relieve the pressure he felt there. Relief was immediate, he said.

We were soon joined by the hospitalist, and then the stomach doctor. Plans were made for a gastroscopy once JD’s breathing improved.

The doctors left. It wasn’t long before the nurses came to pack JD up for his move to the ICU/CCU for the pericardial drainage. I was allowed to follow along, but only until we hit the unit doors. Then I had to wait until I was called for. I could hear JD talking to the nurse as they wheeled his bed to the elevator.

“How soon can my wife come and see me? You know, she’s the reason I get up every morning.”

The ICU

After what seemed like hours, a volunteer came to tell me I could enter the unit and see JD. Once again, I was shocked to see that JD’s condition had deteriorated even further and now he was on full oxygen, being forced into his lungs via a large face mask and a noisy CPAP machine. There were at least 4 people working on him, and the cardiologist that stood by JD’s left shoulder was telling me that JD’s heart was doing funny things and maybe he had nicked an artery during the pericardial drainage and he needed to send JD away again for an angiogram. Holy moley.

I could feel myself tremble. My eyes were starting to fill. Somehow though, I got the strength to keep it together for JD’s sake. Blinking the tears back, I smiled (convincingly, I thought) at my husband and reached for his hand. He was struggling to speak over the noise of the ventilation.

“Paper. Pen.” He gasped out the words as the respiratory technician moved the mask to allow him to communicate better. I barely registered a flurry in the background. Then the items magically appeared in his hands. JD scratched out a few sentences and thrust the clipboard to the technician and nurse at his right shoulder.

“Witness. Sign.” They did.

JD visibly relaxed and handed the clipboard to me. On the paper was his one sentence last will and testament, dated and signed, and now duly witnessed: “I leave everything to my wife. “ I took it and tucked it into my laptop bag, parked in the corner of JD’s section of the ICU ward. Everything was happening so fast and felt very surreal to me at that time.

I said another (falsely) cheerful goodbye to my husband, telling him I would be back as soon as they let me, and let the hospital pastor (a recent arrival to JD’s bedside) escort me to the Cardiac Catheterization Lab waiting room down the hall and around the corner from the ICU.

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.

June – September 2013

Initially the crizotinib worked beautifully. By July we found out that some tumours had shrunk by as much as 80%. We were optimistic that he might even attain NED status (No Evidence of Disease). We knew there was no cure (yet) but there were so many exciting new drugs being developed and if JD could just keep going till there was one…

Ironically, his breathing and comfort level kept slowly deteriorating. This was very confusing. The doctors were very optimistic yet JD kept going downhill, slowly but surely.

Soon his pericardial sac was in need of drainage again. Another stint in the CCU in August; another 2 plus liters removed. His oncologist, Dr. Leighl, pushed for a painful sclerosing procedure to permanently scar the pericardial tissue to prevent future fluid buildups. We researched the procedure and decided instead, to have a pericardial window operation performed when we came back from a 2 week (doctor-approved) vacation throughout the American Southwest and West Coast in September.

May – June 2013

I lost my husband in 2013, on November 14.

His death was actually quite beautiful and peaceful and I want to share it with you.

Here is a brief synopsis of JD’s cancer journey.

JD and I started battling his Stage 4 lung cancer since his diagnosis on May 2, 2013. Ironically, this news came 1 day after his 54th birthday. What a present.

The diagnosis was a shock. JD had never ever smoked or been exposed to any of the known carcinogens such as asbestos. He hadn’t been around second-hand smoke for more than 40 years. Yet here he was, sitting in the doctor’s office and being told he had this cancer throughout his chest and god knows where else, and to put his affairs in order STAT.

What followed next was a whirlwind of diagnostic procedures to determine where the cancer was and wasn’t, and if it was a specific mutation for which there was a targeted therapy. To further complicate matters, he was dealing with a large malignant pericardial effusion, which was worse to deal with, symptom-wise, than the cancer. The fluid building up in the pericardial sac caused pressure on the heart which made it more difficult for JD to breathe or lie down. Untreated, it could lead to his heart stopping if a condition known as cardiac tamponade resulted.

Less than 2 weeks after the initial diagnosis, JD was admitted to the CCU for his first pericardial drainage procedure. More than 2 liters of fluid was drained from the pericardial sac, and he improved immediately.

Two weeks after that, we learned he had been accepted for treatment at Princess Margaret Cancer Centre.

Luckily, the cancer was in no other vital organs, like the brain. No sign of it in the bones either. And luckily, he did have the ALK-positive mutation of lung cancer. It was at this first visit that we learned JD had “won the lung cancer lottery” by having the ALK mutation.

This meant that instead of traditional chemotherapy, he could fight his disease by taking a very expensive pill called crizotinib (trade name Xalkori), twice a day. Although it caused intense nausea (easily counter-acted with another medication), there were none of the other disagreeable symptoms of cancer treatment including appetite and hair loss.