Results tagged “sleep”

I'm at the point with my cancer that the car has finally bumped down off the pavement and we're driving on gravel now. What I mean is, the end of the road is somewhere up ahead, not too far, and I'm not going back to smooth speedy travel, ever. To keep moving at a reasonable pace, I have to pay more attention to details, and a lot of stuff I previously took for granted requires effort—mine or someone else's. This has happened faster than I expected, but life often does.

Several doctors have helped me manage my symptoms, and the celiac block procedure I had last weeks seems to have helped with abdominal pain, for one thing. While my chest cough persists, it is not from fluid building up in my lungs. I am treating the cough, most often at night, with a drug that dries tissues out locally so I can more easily find a comfortable sleeping position. The Depends are doing their job too.

Both of my feet and lower legs are swollen, but that appears to be a regular consequence of my metabolism becoming wonky as the tumours interfere with my various bodily systems. The treatment? Elevate my feet, and wear super-tight compression stockings (I'll get thigh-high ones fitted in the next few days, ooh-la-la). I remain stupefyingly tired, especially on days like today when I decide not to take Ritalin to perk me up.

None of these symptoms will get much better. The only one that could is my voice, which has been nothing but a whisper for two months, but which I hope Dr. Anderson will inject or spray on April 25, and perhaps I'll be able to speak with my vocal cords again.

Real plans, for real. No really.

All the rest means that my wife Air and I are making plans, real plans, about what the next few weeks and months are going to look like. I am on the full B.C. Palliative Care benefits program—British Columbia seems to be in good stead when it comes to this somewhat uncomfortable specialty.

I have signed the official B.C. Do Not Resuscitate (DNR) form, so if I have a heart attack or other really drastic event, then my medical team—plus first responders and hospital staff—know that I don't have long to live, and don't want any overly-heroic treatments to keep me alive at any cost. In particular, there's no point in having me on a ventilator in intensive care when that space could go to someone who might make a full recovery and live a long life.

Emily the Burnaby Health Nurse comes again tomorrow to see what I might need here at home, so that I can stay as long as possible—and to determine who else on her team might be best to help my family and me figure that out. While Burnaby Hospital's Palliative Care ward is apparently extremely nice, and just down the hill, I'm not planning to go there.

Rather, we're physically preparing our house for me to live my last weeks to months here, and likely for me to die here too. Burnaby Health will even bring in a fully-adjustable hospital bed so I can set myself up comfortably.

Being the Decider

I may sound a little cold and matter-of-fact right now, but in truth it's surprisingly satisfying, even a bit joyful, for Air and me to be able to make decisions about how my life will end—and to know that these decisions will take effect not in some abstract future, but soon.

Personally I don't expect to live until autumn, and I don't know if I'll get very far into summer. But if that's the way it happens, I'd like to die during a beautiful Vancouver summer rather than one of our grimmer grey seasons. Once I'm dead there'll be no further experiences, so I may as well face a lovely city in the sunshine beforehand if I get the chance.

At the moment none of my doctors sees any particular single organ or physiological system as a big scary killer lurking to take me down suddenly, or with a series of cascading problems. More likely I'll continue to become weaker and more tired, and I may need some help breathing later. Then, eventually, weeks or a few months down this gravel road, I'll simply shut down, and I'll die. There won't be a Derek anymore.

That sounds like a decent way to go.

Not many people have seen me in the past two or three weeks. If you had, you'd probably say, "Derek doesn't look so good." And you'd be right. After the high point of my living wake early in March, I took a turn downhill.

Soon enough, I found it difficult to get myself out of the house for such simple tasks as walking our dog Lucy. Right now I don't have the strength to do even that, and I don't feel comfortable driving anymore either. Going out for dinner with the family, or friends? Out of the question.

A drag of a morning

Here, for example, was how a series of simple tasks went this morning. I dragged myself out of bed (a pure mind-over-matter exercise against my body), put on my bathrobe and slippers, and had Lucy come with me. I opened our back door so she could go out in the yard, and I followed her. Half-way down the back steps I had to sit down on the stairs: I didn't have the energy to get all the way down to the back yard in one go.

A few minutes later I managed it, walking down the rest of the steps and into the yard, and sat on our lawn chair while Lucy ran around and did her usual doggy business. Ten minutes later it was time to go back inside. I propped the chair up again the wall of the house and walked, very slowly, back around the side of the house, up the stairs, and into the kitchen. Where I promptly had to sit down again on the first chair I could grab.

I had planned to make myself a bowl of corn flakes, but such a simple task seemed daunting. Instead I went to lie down in bed for 15 minutes to recover, after which I was able to prepare the cereal—but before I was able to eat it, I puked in the sink. Afterwards, the cereal went down fine, and I followed it with a Ritalin, which I hoped might push me into the realm of "not completely exhausted" later in the day.

A slightly better afternoon

Sitting up in bed, I browsed a few websites and listened to CBC Radio. At some point I nodded off for half an hour while my wife and kids were out looking for paint colours for the kitchen. But I did wake up feeling perkier. Right now I'm on the back porch typing this in the vaguely-warm spring sunshine, with the dog once again snuffling about. I feel like a tired but functional version of myself, rather than the depleted and worn-out lump I did this morning.

I saw my family doctor yesterday, and he told me that is the pattern for cancer patients: the two major debilitating symptoms are pain and fatigue, and my pain is under reasonable control. He encouraged me to move around as much as I can—which is what I was trying to do during my sit-on-the-stairs experience today—and to keep my mind active. At my lowest, sometimes that in itself can be difficult.

I wonder how long it will be before I can no longer walk unassisted? Before I can't make a sandwich? Before I'm pretty much bedridden? No one knows the answers, not my doctors, not me, but the time will come. That's scary.

It was shockingly quiet here in the house all week, just me and Lucy the dog. I hardly went out, since I was pretty ill most of the time. My parents dropped by to check on me, walk the dog, and drop off food from time to time. But I spent the week—largely feeling content and by my own choice—mostly alone.

This afternoon my wife and two daughters returned from Victoria, where she had been attending a conference, pulling up in the car close to 3 p.m.

The transformation was instantaneous. Kids arguing, laundry flying, puppy barking, snacks inhaled, sudden clutter making magical appearances here and there. Air and I exchanged a few glances: she'd been dealing with this type of chaos by herself for six days and nights.

I had woken up mysteriously early this morning, and Air was tired after an early morning and the drive and ferry, so we crashed out for a nap while the kids played and watched TV. Despite the continued noise (even Lucy decided to chomp on a squeaky toy while lying between us), I had a smile on my face. It's better when the house is full.

I'm sure I'll tire of the hullabaloo soon enough, but not today.

Know what happens when you're already sick and weak and tired from stage 4 cancer, and then you catch a small virus that gives you a minor fever and some aches and pains?

As I discovered on Friday, you get wiped out. I've just been sleeping and sleeping all weekend, between trips to the bathroom and occasional kitchen visits to get a bit of food. I'm ridiculously tired.

I hope this goes away soon. I've hardly spoken to my wife and kids in two days. At least the diet root beer still tastes good.

Back in 2007, before I had my big cancer surgery, I was taking morphine tablets a couple of times a day. As of yesterday, I am again—quite possibly indefinitely. It's because of that pain I've been having in my torso, which so far has no obvious source, but which I'm guessing is simply the result of my ever-growing tumours. In recent weeks it's been keeping me from going to sleep easily, or waking me up in the night. I was taking too many Tylenol 3 and Advil pills. For someone like me, morphine is a better and safer painkiller.

The drug is pretty amazing stuff, really. When I had my last partial bowel blockage in 2008, it was excruciating. But a single injection of morphine abated the pain within minutes, and was able to keep it at bay in hospital while I waited for my body to clear the obstruction. So far the low-dose, twice-daily pills are working well against my current pain, and I have shorter-acting tablets I can take if things act up in between.

The team at the Pain Clinic yesterday also prescribed me Zopiclone, a sleeping pill, in case I needed it. Last night I tried half a tablet because the morphine hadn't fully kicked in by bedtime, but so far I'm not a fan. I've been in a zombie-like state most of the day, much more so than my usual chemo-recovery Thursday. I'm certainly in no shape to drive or operate heavy machinery. Or light machinery, for that matter. I'll keep the sleeping pills in reserve in case I really need them. But I think I'll sleep fine just reducing the pain first.

More chemo today, so expect little posting here for a day or two or three.

As an early Father's Day present, our dog Lucy decided to give me (and my wife Air) some extra space in the bed today, and sleep on a pile of clothes on the bedroom floor instead:

No, she's not actually a stuffed toy.

I was supposed to have chemotherapy today, but it didn't happen because my body isn't ready for it yet. Despite taking an extra week off from the treatments since my last one at the beginning of May, blood tests showed my neutrophil counts to be too low, so we're waiting another week. (Other blood readings were okay.)

Neutrophils are white blood cells, a key part of my immune system. They're cool under a microscope because they have a three-lobed cell nucleus (most cells have one). Chemo hammers them just as it does with cancer cells. Normal neutrophil levels for healthy people are between 2.5 and 7.5 x 10⁹ (2.5 to 7.5 billion) cells per litre of blood. We'd normally go ahead with chemo if my levels were at 1.5 or higher, and might even proceed if they are as low as 1.0. But today they were 0.9, too low, so I had to come home from the Cancer Agency.

I'd already taken some of my anti-nausea and anti-anxiety medication, however, so by the time my dad drove me back, the Gravol and Ativan were kicking in, and I fell asleep for five and a half hours. Now I'm a awake and feeling a little more normal after some good Chinese food.

The human body can take a surprising amount of punishment, and I'm good evidence of that. But the punishment does have its price: I was in the bathroom for several hours last night with other side effects, and injuries heal more slowly than usual too. I skinned my knee on the edge of our bed a few weeks ago, and there's still a noticeable bruise there.

The weirdest thing right now? One of the drugs I'm taking, oxaliplatin, causes peripheral nerve damage, or neuropathy (also a risk from the diabetes I've had for almost 20 years). Both of my feet feel a little numb and tingly all the time. And now, if I face my head forward and rapidly move my chin down, like I'm nodding, I get a pronounced pins-and-needles "shock" in my soles.

Nodding has no effect on the rest of my body. If I turn my head sideways and nod, I don't get the zap. If I nod down slowly enough, I also don't feel it. But a sharp downward nod produces a noticeable jolt. I'm probably slightly squeezing a nerve or something. It's not painful, nor alarming, just strange. And a sort of cool. Sometimes I find myself doing it for fun.

So I have one more week to be reasonably well before I descend into the chemo pit again. I'm a bit disappointed not to get treatment moving once more, but another week without debilitating nausea is also okay by me.