…Tall (in attitude if not in fact)

I used to belong to a mini-Schnauzer who was the biggest little dog ever made.

Whenever Lucy looked in the mirror she saw a 120 lb. Rottweiler looking back at her. I swear.

That dog was afraid of nothing and no one. She demanded expected everyone to adore her (as we all did). Lucy is gone now, waiting for her human family on the other side of the rainbow bridge. But her legend lives on. She was not big or tall, but she certainly was all that (and a bag of chips) in attitude – all 18 pounds of her.

I am a little like that, in one aspect at least. I am quite often surprised when I see myself in photos taken together with others, to find that I am shorter than some of these people.

I get surprised because it certainly seems to me that I am looking these people straight in the eye when we get together. However, a photo clearly demonstrates that they have the height advantage over me. So once again I am reminded that I am not that tall.

But! I have a tall attitude. That counts for something, right?

Does this ever happen to anyone else? Or am I alone in this apparent delusion of height equality?

The WB

 

…Dying well.

As I’ve been witness to a number of deaths over the past 18 months of my life, I’ve been thinking a lot about death and dying. So much so, that I have marked my calendar to remind me to look into becoming a hospice volunteer, once I have completed my MBA studies, next December.

Dying well is as much a part of life as living well. In fact, I would challenge that one cannot embrace life fully without embracing the idea of death, as it is the natural conclusion of life. So why not plan to die well?

For me, dying well means planning for death when still able to do so. To be as prepared as possible, to wrap up up as many loose ends as possible, to be able to face the end with a full awareness of what is happening, and to be in as much control of the manner of dying as is “allowed”. To die in peace.

Those who die suddenly and/or violently cannot do these things, other than to be prepared with a will, letters to loved ones etc.

But most of us do not die this way. Most of us will end our lives in a slow decline due to incurable illness or “old age”. Plenty of time to carry out a plan to die well.

I am going to be studying more on this subject as time allows in the coming months. I find it to be fascinating. I am not afraid of dying, although I have many things I want to do and see on this earth first. I hope my death is many years away yet, and when it does come, that I will be able to die well.

The WB

Today I was surfing the web looking for sites about hiking the Bruce Trail (ah, spring fever!) and of course Google led me to some blogs. Visited a few, then came across a blogger who had signed up for this “A to Z” challenge. Before I had a chance to overthink this idea (and talk myself out of participating), I had signed myself up for the selfsame challenge!

So here’s the deal. 26 days of blogging. 26 letters of the alphabet. Each day of the challenge to write a post about a topic starting with the letter of the alphabet as specified in the above calendar. Sounds easy, right? And just the thing I need to get me back in the blogging habit!

So excited to start this challenge! Wish me luck…especially for the letters X and Z!

The WB

On October 30, 2013 I was at work when I got the call from my home.

“It’s a beautiful day and I want to walk. Leave work now and meet me at the Post Office. That’s where I’m walking to, and then we can walk down to the river.”

I looked at my colleague Joanne, who nodded and said, “When your husband says leave work to go for a walk with him, you’d better go.”

So I did. It was a very nice fall afternoon but JD was needing constant oxygen, and so frail with his body wracked with cancer that I worried all along the drive home.

He surprised me with his good humour and his ability to walk and we enjoyed ourselves very much. We’d had so many sad and tense days since his diagnosis that this felt almost like the old, pre-cancer JD And me.

He talked about our moving to the Post Office, and how he would sit on the bench on the other side of the Mill Pond, and I could meet him there every afternoon once I got off work. Part of me knew this would never happen, and part of me willingly went along with the fantasy – an escape for the moment. He wanted me to take a picture of him pointing to the spot where he would be waiting for me.

Two weeks later, on November 13, he would lay dying in the ICU. I think often of that last walk. I am so glad I did cut my work day short to be with him on what turned out to be our last walk together.

 

I just finished my Ethical Decision Making class and am now “on hiatus” from my MBA studies until January 2015, when I undertake Business Law.

So, I am really hoping to be able to blog more frequently and with some regularity….and do some much needed work on this website.

Life is ticking on as it should. I am still reeling with emotions some days, still confused as hell as to how I am feeling on others, but mostly I am happy with how my new life is unfolding.

Since my last post and before my just-finished course, I spent a couple of weeks in the Netherlands with my son, staying with family and showing him his Dutch heritage.

As a result of that trip (and becoming used to wonderful coffees every morning from my cousin’s dream machine), I am now the proud owner of a fancy schmancy latte-makin’ machine myself. Behold:

I made it a priority to enjoy this summer, as last summer was just a blur of hospitals and treatments and research and futile prayers for healing. I’ve been to a Michael Bublé concert, BIG Music Fest, and the Mill Race Folk Festival so far.

And this year’s tax refund was dedicated to building a rooftop patio, which is now finished and furnished except for a railing. I am enjoying this space every morning and every evening that the weather allows. Behold:

I have dedicated a lot of my free moments lately to cleaning up 20 years’ worth of messes in my building, with a lot of help from family and friends. This works continues:

So, to ensure that I don’t spend every waking moment on this type of work, I also signed up for a 1/2 marathon race in Montreal on September 28th. This means:

Those are the highlights of what I’ve been up to lately. More (and more regular) posts to come!

 

 

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.