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.

Started drinking alcohol, specifically wine, again. Sounds bad, I know…I told people my New Year’s resolution for 2014 was to take up drinking again, and I meant it. But not in a bad way, people!!!! In a socially responsible way…with friends, over a nice meal…that sort of thing.

Was at a birthday party last week at a local restaurant. The waitress asked me if I wanted to have some wine with dinner.

Sure, I said. Make it red.
What kind, she said.
Surprise me, I said.

The wine came in one of those trendy stemless glasses that looks like a small vase. It was excellent. Murphy-something (Goode, I think?).

Then I got the bill. My vase of wine cost $12.

Oh yeah, I was surprised all right.

I know it’s been quite a few years since I drank alcohol, but last time I was in a liquor store you could buy a half-decent bottle of wine for $12. Has it really been that long?

Sorry for the vulgarity and profanity. It’s just been one of those days weeks.

In the Village, there is a very popular high school teacher who was recently been diagnosed with cancer. He was a favourite of the Badass Daughter when she attended – a gym teacher and football coach – in his mid 40s with a wife and 2 small children. So sad and so unfair. He was diagnosed with the exact same cancer as my husband. Stage 4 adenocarcinoma of the lungs with malignant pericardial effusion. Also a non-smoker and example of healthy living.

Seeing the Facebook posts and reading in print media about this man and the campaign that has been started to provide support for him and his family trigger me almost every day. And I stand, teetering on the edge of the abyss, as I have to deal with the unwanted thoughts and memories of all the confusion, fear and despair of our brief but intense cancer journey all over again.

Yesterday I saw in a Facebook post that he possesses the ALK mutation (again, like my husband) and the family is thanking their supporters for all the thoughts and prayers, and writing how this is such a great outcome and means a better prognosis. I wish I could believe that.

I know now how the story ends for 99% of those with this disease, even with this mutation. Only 1% will still be alive 5 years after diagnosis. I really wish it will mean a better prognosis for this man and his family, but I can’t believe that, not any more. However, he has a very good chance of being spared at lot of the more harmful side effects of chemo, and as a result there will be a better quality to what remains of his life.

He may even be lucky enough to go into remission. I hope this happens and that it lasts for a long long time. Long enough for the next great cancer-fighting drug to come along and keep this man alive for many more years yet. That’s what JD and I were hoping for, for JD.

Yesterday I was triggered again, by another incident. I had hired a handyman to do some work for me, to ready part of my building for a commercial tenant. Came home Friday to find him falling-down drunk – he actually did fall down in my presence – and little to no work done. My agent came over a few minutes after I got there (thankfully!) and we got him out of the building and into a cab.

Got an email from him the next day apologizing and serving up learning of the death of an uncle as his excuse for drinking himself into a stupor instead of doing the work he was charged to do. Boy, that was the wrong thing to tell the recently widowed.

Hell, if I can face the world sober after what happened to JD and I since May 2013, anybody can.

I can’t begin to describe to you the amount of fury reading that sentence unleashed in me. Any compassion I had previously felt for this man (not much, but there was definitely some there) immediately vapourized. I gathered up his tools and stacked them neatly by the backdoor. I emailed him back that I no longer required his services and called bullshit on his excuse (after expressing condolences, of course).

I know, I read all about how we all grieve differently and that there is no right and no wrong way to do it. But I challenge that statement. Drinking yourself stupid on the job site and then asserting that you are going to drive home qualifies as a wrong way to grieve in my books.

I hope I won’t always be so easy to trigger, and that my fury abates and my usual levels of compassion for others return. But in the meantime, this widow is kicking asses (to the curb) and taking names.

Tonight I started back into my online MBA program again. For the first time since my husband died.

To say I am wrenched into knots with emotion and memories as I sit down at my laptop to partake in course discussions is a complete understatement of what I am actually feeling.

Everything just feels so wrong. I should be sitting in my old kitchen, hammering out posts at the table, while bantering and kibitzing with my husband, who is working away at the old desktop computer in the next room. I should be getting up every hour or so to massage his sore neck and shoulder muscles, and to laugh with him, and make each of us a hot tea or a cold drink.

Instead I am alone at my new place, in my new, still mostly disorganized home office. I am angry, I am blue, I am missing him so much I want to scream and tear my hair out…anything to distract me from the overwhelming sadness of continuing on without him.

Instead of doing any of the above, I put on my Widow Badass persona and craft a kick-butt first post to one of this week’s discussion questions. Omigod, it is so good it should be framed…no, bronzed!

At least, this is what the Widow Badass thinks. Mizz D is too distraught to care, for now. Thank goddess for the Widow B. She will get me through school, if no one else can.

Today I made hard-boiled eggs. The last time I hard-boiled some eggs my husband was still alive.

I can’t help but think these thoughts as I go through my days. Every event, every piece of clothing I wear, every thing I hear, see, think or do is becoming resorted and tagged as either Husband Alive (HA) or Husband Dead (HD).

The timeline of my life was changed on November 14, 2013. That was the date that the HD era began for me, at shortly after midnight.  As in, the last time I hard-boiled eggs it was sometime in November, HA. Today I made some again…it is February 23, HD.

I wonder when if I will ever stop using the timeline.