Tag Archives: 2017

Terminal Cancer, Day by Day

Early Exits

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On Monday, Brock was so unusually sick that I texted his doctor to describe the symptoms. Brock had slept for over 24 hours, he was so out of it that he could barely speak when he became conscious, and he’d managed to tell me that he felt flu-sick, which wasn’t his normal cancer-sick. Also, there was a hard, angry-red lump on his chest that was getting redder and angrier.

Brock’s amazing family doctor arrived within the hour and diagnosed Brock as having an infection. It was quite bad, and might be septic.

Brock sweated in our bed while his doctor explained the options to me, my dad and Brock’s brother in the living room.

We could:

  • take Brock by ambulance to the hospital so Brock could be given antibiotics by IV (which might not cure him);
  • stay at home and try to treat him with less-effective oral antibiotics; or,
  • we could nothing.  Brock would die from the infection, at home.

Fear not, you normal, healthy people: these would not be your options if you had an infection. You would be whisked off to hospital without the couch consultation.

Brock’s situation is unique because he is already dying. And when you know that a cancer death is looming, our health care system allows you the option to take an “early exit” (as Maggie Callanan calls it in Final Journeys), if you would prefer not to linger.

But knowing this, reading about early exits, and discussing advance care options and Do Not Resuscitate orders with Brock did NOT prepare me for the emotional tsunami of being in this situation.

Obviously I don’t want Brock to die. I want him to live for as long as possible. But I also don’t want him to suffer, and being in a hospital has many downsides for someone as weak as he is. Would they let me stay with him? Would he be comfortable, away from his collection of pillows and Lazy Boy recliner and memory foam bed? Would Isaac miss us too much, and would I be able to be with Brock at the hospital while also giving Isaac the attention he needs at home?

If I chose to keep Brock at home with oral antibiotics, would his family and friends judge me for that decision? Would I have regrets and blame myself if he died?

Luckily (oh so luckily!!) Brock and I had already discussed all of this. He’d made his wishes clear: as long as treatment meant he’d continue to have quality of life at home afterwards, he wanted that treatment. He didn’t want to spend the rest of his life in a hospital, but this infection didn’t carry that risk. He’d be treated, and then (if the antibiotics worked) he’d be back home with us, back to the Brock he’d been 24 hours before. If the antibiotics didn’t work, he would die in the hospital.

I didn’t have to consider all the options. I didn’t have to solicit advice from anyone. I just conveyed Brock’s wishes, and our course of action was clear.

It’s Saturday now, and I’m writing this with Brock sleeping beside me in our bed. He had four courses of IV antibiotics and we spent three nights in the hospital, me curled at the foot of his bed like a cat. He’s on oral antibiotics now, and the angry red rock of infection inside his chest has practically disappeared.

I am so grateful that he told me what to do, long before we faced that decision. I’m grateful that he endured the painful ambulance-stretcher trip to the emergency room, and restless nights in the hospital. We could have lost Brock this week. Instead, we’re spending a lazy Saturday together.

No regrets.

Terminal Cancer, Day by Day

Do Not Resuscitate

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Brock asked his palliative care oncologist if he should not drink alcohol while taking a certain pain medication. She said: “Why not? If you want a drink, drink.”

He was hesitant to accept sleeping pills (even though he wasn’t sleeping well), because he didn’t “want to get addicted to them.”

He was nervous about taking “too many” painkillers, even though he was in pain.

One of the biggest transformations we’ve undergone over the past 2-3 years of Brock living with cancer is overcoming these “healthy person” attitudes. When you’re sick and dying, it’s important to get the sleep you need: the small risk of addiction simply doesn’t matter. It’s important to control your pain, to protect the quality of the life you have left. And why deny yourself the things you find pleasurable, whether that’s a well-made Old Fashioned or a McDonald’s Big Mac? Life is too short to be a martyr and suffer needlessly.

When we turned from “curative” care to palliative care, Brock signed a Do Not Resuscitate (DNR) form. We have copies of this in our vehicles, in my purse and at home. Normal People call 9-1-1 if there’s a health emergency, and paramedics are legally obligated to perform CPR (if it’s needed) when they arrive. CPR can break or fracture ribs, and cause stress and needless drama to an otherwise peaceful, natural death. Normal, Healthy People don’t mind a fractured rib if it means saving their life, but for someone already close to death it’s a painful and offensive final blow to their diminishing quality of life.

Ever since Brock signed that form, one of the hardest parts of my “caregiver” job has been to decide when Brock needs emergency help, and when it’s a natural progression of his cancer and I just need to be patient and wait things out.

One night in May I came into our bedroom and found Brock lying in bed, his face as red as a marathon runner’s. He told me he needed to get up and go to the bathroom, but he said he couldn’t breathe well enough to stand. He started to fall asleep. I told him this wasn’t okay and so we needed to go to the hospital, but he said he couldn’t make it down our stairs. So I woke up our neighbour/friend Dan, who came upstairs in case Isaac woke up, and then I called the ambulance and started packing.

This was the right decision: Brock’s tumors had eaten up so much of his lungs that he wasn’t getting enough oxygen. The ER staff put Brock onto oxygen and we were set up with an oxygen concentrator at home by the time Brock came home the next day.

A month ago, Brock spent two days sleeping. This wasn’t overly concerning, but he was barely conscious when he did wake up to use the washroom: he was delirious and saying weird things.

BROCK: “Is that our dog barking?”

(We’ve never had a dog.)

I called our super star home care nurse hotline and Nurse Bonnie calmed me down. It could be an infection, or it could be a natural downswing in Brock’s health. She said to wait and see how he was in the morning. (Mid-story pause here to share two tangential thoughts.)

Tangent #1:

Another item to add to the list of “toughest moments” is every time I’ve had to make a decision without being able to consult with Brock. We consult. It’s what we’ve always done through our 11 years together. He argues for facts and I argue for instinct, and between us we make good decisions. I don’t like making decisions without Brock having a say, especially when it concerns him. Being the sole decision maker reminds me that our 50:50 partnership is changing, and I do not want that.

Tangent #2:

Actually, this is more backstory than tangent.

There have been numerous times in the past 2-3 years that I’ve thought, “This is it, Brock can’t possibly get sicker/weaker. He’s going to die soon and I am so scared.” But then he does live, and continues to get even more sick/weak. I’ve never known anyone dying well enough to witness the deterioration. I vaguely understand the process, thanks to reading books like Maggie Callanan’s Final Journeys and Final Gifts, but this is Brock and my first time experiencing it. I’m continually shocked by just how sick/weak Brock can become, and yet continue to live.

Back to the sleeping + delirium story:

So I talked with Nurse Bonnie and I asked her if this could be it: is this what dying looks like? She said maybe — Brock might wake up and be fine the next morning, or he might be sick and treatable, or maybe this was the end.

And (strangely) I felt relieved, because I wasn’t overreacting or being melodramatic. When your loved one is saying crazy things and can’t seem to wake up, it’s terrifying — and that’s okay. Our life these days is terrifying on a regular basis, and that’s to be expected.

I wish we knew exactly how long we had left together. So much of the panic and stress I feel is due to this uncertainty. If I knew we had a year, I’d find a way to get Brock on a Bucket List trip to the states. If we have a week, I’d order take-out every night for dinner so I wouldn’t have to be in the kitchen and miss those extra hours reading beside him while he naps.