Derek K. Miller - Penmachine words music comment - Vancouver, Canada

It's difficult for me to understand what it's like for my family and friends as I go through cancer treatment. As I've written before, in some ways it's easier for me than for them, because at any time I know how I feel, and at least tell myself that I have a decent sense of how I'm doing. That's not always clear to those close to me, and I know they worry.

I think I have a better understanding of it this week, because my wife had elective surgery a few days ago. She was in hospital overnight (which the doctors had expected and planned for, but which we didn't know about in advance), and has been recovering here at home. Since I'm not on chemotherapy this week, I'm in reasonably good shape and have been able to keep the house running fairly well.

But I wish there was more I could do to alleviate her pain and other discomfort. I also have little sense, from hour to hour, how she's feeling. I feel a bit useless. And this is relatively short term—she's been taking care of me, and doing a great job of it, as I've been through surgeries, chemo, radiation, drastic weight loss, and much more for well over a year.

This is that "in sickness and in health" part they talk about when you get married. I'm glad we can be there for each other.

Labels: family, hospital, pain, surgery

I was supposed to have another CT scan today, but the scan machine was broken, and the technicians were on the phone with GE, who make it, to try to find a resolution. My scan will be rescheduled.

Now there's some tech support I wouldn't want to deal with.

More chemotherapy tomorrow. Only two more treatments after that. As far as I know for now, anyway.

Labels: cancer, chemotherapy, ctscan, hospital

Here's what I wrote, hurriedly, on Facebook and Twitter earlier today:

CT scan good: lung tumours either stable or "noticeably smaller." Alas, small blood clot in lungs, must take blood thinner needle daily now.

Let me explain that. This morning, I talked to a social worker in the patient counselling department at the B.C. Cancer Agency, as I do about once a month, just to get things off my chest. I was having a CT scan later in the day, which would be the first test in several months to see whether my current chemotherapy round is actually killing my cancer. I felt mixed about that, not knowing what path my life would take in the next few months, even more so as I prepared to give a speech at my friend Martin's memorial service on Sunday.

The scan itself was uneventful, and I didn't expect to hear any results until Tuesday, when I next see my oncologist Dr. Kennecke. So my wife and I drove back to Burnaby. The chemotherapy has started to thin my hair, which isn't falling out in clumps, but is shedding some in the shower, so I decided to get a short haircut again in case that gets any more pronounced. After that, my wife went to find some shoes and I had a snack at the food court.

While I sat at the table, my phone rang. I expected my wife, but it was Dr. Gill, another oncologist from the Cancer Agency.

"The CT scan found an incidental blood clot in your lung," she said.

Oh shit, I thought.

"Are you having any trouble breathing, or chest pain?"

I wasn't.

"That's good. We'd still like you to come back to the Agency this afternoon, so we can start you on some blood thinners. How soon can you be here?"

It was 3:45. I said around 4:30.

"I'll see you as soon as you arrive."

I called my wife. She freaked out a little. I called my dad, who was watching the kids. He sounded calm, but I knew he'd also be freaking out a little. Back into the car, through traffic, at the Cancer Agency by 4:30.

A nurse immediately took us aside. "Take this form up to the lab for some blood tests right now. You can also take this prescription to the pharmacy down the street and get it filled immediately. Then come back here to Station C and Dr. Gill will see you." In a flash we were back at the elevator, blinking and stunned, my wife to go the pharmacy and me for my blood tests. We were both back within 20 minutes, when Dr. Gill met us and explained what was going on.

Some of the chemotherapy agents I'm taking, particularly Avastin, can lead to bleeding and blood clotting. I've noticed that in places like my nose. Turns out it's happening in my right lung too.

So now we have a new drug in our cupboard, a series of syringes of anticoagulant (blood thinner), which I must inject subcutaneously, the same as I have done with insulin for the past 17 years. I'll do that once each day for the next six months or so. The drug will help prevent the clot I have from growing, and should help keep new ones from forming. I will also bleed and bruise more easily as a consequence.

The good news is that Dr. Gill also told us about the main result of the CT scan, which is that the metastatic tumours in my lungs have not grown. Indeed, some are stable, while others are "noticeably smaller." So the chemo is doing something, which is the whole damn point. While obscured by our alarm about the blood clot, that is the kind of news I've been waiting to get for a whole year.

The nurse who came to show me how to administer the blood thinner (it's so similar to insulin injections that I was very comfortable with the procedure right away) also listed off some of the possible side effects, but said, "These probably won't be a worry for you, because you're young and healthy."

I laughed. People like me with stage 4 metastatic colorectal cancer don't apply the word "healthy" to ourselves too often. But that was also good to hear.

Labels: cancer, chemotherapy, ctscan, hospital, therapy

Back in July when I spent the month in hospital, I had several neighbours. The last one, who came in for intestinal surgery while I was on the ward and was still there when I left, was an older guy who'd moved to Canada from the Netherlands after World War II, worked as a machinist in a mill, and now likes to play golf in his retirement.

In the 1960s, he built his own house in Squamish, near the mill where he worked. I don't mean he paid people to build it—from what he said while we shared our hospital room, he constructed most of the house himself, with his own hands. He still lives in it.

I admire that. It's something I don't know how to do. I build ephemeral, non-material things like web pages, but I'd have no idea how to put together a building to shelter my family, and which could last more than 40 years. My grandfather was a carpenter, and helped build houses for a living, though he didn't build the last house he lived in, which is where I live now. My friend and podcast co-host Paul built himself a garage, and could probably pull off a house if need be.

For most of the vast span of human time, for hundreds of thousands of years in Africa and beyond, some of the only things worth knowing were how to create a shelter, and find food, and stay warm. Things many of us, like me, would have great trouble doing if cast out to our own devices in the wild. Today, even those who do know how to one thing, like build a house, might not know how to grow food or hunt an animal. That's a purely modern situation.

At least I was a Boy Scout. I can start a fire if I have to.

Labels: family, food, home, hospital

Tonight my wife was about to cook some dinner when she accidentally sliced a deep gouge at the base of her thumb with one of our sharp, sharp knives. That short-circuited dinner plans, but fortunately there is a walk-in clinic nearby where she could get treated quickly, with a tetanus shot, some medical tape, and bandages. We were in and out within half an hour. (Had it been late at night, we'd probably still be waiting at the hospital ER.)

Also luckily, I'm feeling surprisingly good today after a nurse removed my chemotherapy "baby bottle" following the allotted two days of treatment. So I was able to prepare the Hamburger Helper and salad tonight while my wife recovered on the couch with a book and a nice glass of wine.

Now we're sitting by a fire in the living room, and the kids are watching some TV. It's a nasty rainy night out there, but we are dry and warm inside. I'm tired, but I'm glad things are back to normal.

Labels: food, hospital, pain

Compared to everything else that has happened recently, that surgery was a walk in the park. I'm home now, and going to have a nap. Or watch some more MythBusters.

Labels: cancer, family, friends, hospital, mythbusters, pain, surgery

Back in July when I had my big cancer surgery, Dr. Gourlay at St. Paul's inserted a small plastic stent into my left ureter, which needs to be removed. I've been waiting to hear from his office about when that might happen.

This morning they called to remind me that it's happening tomorrow. Except I never heard about it in the first place—the "reminder" was my first notice. That's fine. They will be sedating me, so I need to be at the hospital at 7:30 a.m., and the procedure is pretty short, so I should be back by lunch. (Much shorter than my last stay in hospital, I'm glad to say.)

My wife and parents and kids have been tremendously understanding as we shuffle the logistics around to make this work on short notice. I'm tremendously lucky to have them all here supporting me. Plans change fast around here sometimes.

Labels: cancer, family, friends, hospital, pain, surgery

Now that Labour Day is here, it's time to refine the plans:

1. Sometime this month, I'll have a portacath inserted in my upper chest to prepare for more chemotherapy in October.
2. I have numerous appointments with oncologists, socials workers, pain management folks, and so on, to prepare for the next phase of treatment.
3. I'll also try to gain more weight. I'm up above 160 pounds (72 kg), which was easy, but going further seems to be a bit of an effort—I need to eat more than I might want to put on weight consistently.
4. Once I've regained some more strength around the end of the month, we'll start more chemotherapy.
5. I'll be getting three different drugs through the portacath, in a sequence that has me one day at the Cancer Agency, two more days of treatment at home, then two weeks off—for six months or so.

We've dealt with the cancer in my bowels. As far as we know, it's gone. The chemo is to address the metastases in my lungs. I hope we can get rid of those as well.

Labels: cancer, chemotherapy, fatigue, hospital, ileostomy, pain, surgery

It turns out that the other antibiotic I'm taking, metronidazole, has fatigue as a side effect—just what I need. Yesterday I woke up, got the kids breakfast, and flaked around for awhile. Then we went to Ikea for a couple of hours. When we got home, I slept for another three hours before dinner. At 7:30 I slept again, all night, until almost 10:00 this morning.

I think I could sleep all the time given the opportunity. Most of the time, when I think "what was I doing 12 hours ago?", the answer is "sleeping." It's insane. Fortunately I'm only taking these pills for ten days, then perhaps I'll perk up again.

It would probably be fine if I weren't so tired to start with, but compounding the fatigue I already have is more than I'd prefer to deal with. Maybe a bunch of coffee would help.

Labels: ambulance, antibiotics, cancer, diabetes, fatigue, hospital

Yesterday turned out not so well after all. Turning corners is sometimes tricky. Around 4 in the afternoon I started getting diabetic hypoglycemia—low blood sugar—which does happen from time to time. I've been diabetic for 16 years, and my usual treatment is a simple can of Coke, which usually takes care of it quickly.

Not this time. I was unable to stabilize my blood sugars with Coke, with snacks, with juice, with brown sugar, with pudding, or with anything else. My wife became worried about me, as did I, because unchecked hypoglycemia can make me pass out.

Eventually we called an ambulance, which took me to Burnaby Hospital's Emergency ward, where they stabilized me and gave me some food. A few hours later the doctor discharged me and I went home.

After I had a bath and calmed down some, I read through the customer information for the couple of new antibiotics I started taking, which were the only new things that had happened yesterday.

Sure enough, one of the two drugs "may affect your blood sugar." No kidding. I had specifically asked my prescribing surgeon whether everything was okay for diabetes, and had mentioned it to the ambulance crew, and the nurses, and the doctors at the hospital, but no one knew about that. Just a reminder to be vigilant about your medications—the professionals don't know about every possible interaction.

And I'm fine now, just tired again.

Labels: ambulance, antibiotics, cancer, diabetes, fatigue, hospital

It's been more than six weeks since my major cancer surgery, and only now do I feel like I've turned a corner in my recovery. Not that I'm "all better," but I'm improving, and at a better pace.

For instance, I was able to walk with my daughter and our friends' dog a full four blocks from our house and back, without using my cane or a wheelchair. I was tired when we returned, but I made it. Some of my pain and other symptoms are gradually going away. I may even be ready to start my next round of chemotherapy soon, which is something I am looking forward to—an odd thing to say. I've gained some 15 pounds from my record low in the 145-pound range, so that's a relief, even though I'm still a long way from my 200-pound average of the past several years.

But the fatigue, huge and oppressive, is my main remaining side effect, and it isn't changing much. Yesterday I drove the car, had a doctor's appointment, and went out for dinner. After that I had to sleep for four hours to recover. Today I took the kids for breakfast at McDonald's, and had to lie down for an hour afterwards too.

So it's a shallow corner, but I'm turning it. I think I'll be able to walk my daughters to school in a couple of weeks. That was my goal.

Labels: cancer, chemotherapy, fatigue, hospital, ileostomy, pain, surgery

I haven't blogged, or read or responded to email, or done much on Facebook, because I am so, so tired.

The biggest bothers of recovering here at home are that fatigue, which is quite unbelievable (walking a block and a half is like running a marathon), and some persistent pain I'm having in my butt, part of which is due to a minor bedsore I developed during my last hospital stay. I went to the Cancer Agency today to talk about that, among other things, as well as to talk to a counsellor for the first time in my life. I'm maybe half-way through my treatment now, and it is a grinding slog, so it will help to have a professional to consult about it.

Tomorrow I'll also talk to Dr. Phang, my surgeon, about the pain and what I should do about it. It's all about the doctors and hospitals and clinics right now. And eating. I'm eating a lot to try to gain some weight, though I'm not sure if that's working yet.

Have a good long weekend. I'm hoping mine's a bit of an improvement. Don't forget that my dad is also blogging about how I'm doing, sometimes in more detail.

Labels: cancer, fatigue, hospital, ileostomy, morphine, pain, surgery

It's a day earlier than I expected, but I'm finally home from St. Paul's Hospital once more, after spending almost all of July there. I am tired and incredibly weak, but I plan to improve now, and not go back to the hospital again for a long time.

Labels: cancer, hospital, ileostomy, morphine, pain, surgery

It's been well over a week since my last post, where I was complaining about morphine withdrawal. Well, it turned out to be rather more than that—yes, there were those shakes and chills and sweats, but it turned out that I also had a partial bowel blockage.

So I checked myself back into St. Paul's Hospital on Wednesday, July 18, and have been here ever since. It looks like things are finally stabilizing: I no longer have a tube up my nose, I'm starting to manage my own blood glucose again, and the medical crew needs to get my potassium levels under control, but the key thing is fatigue. I'm very weak, since I only started solid food again two days ago, and I'm now down to 148 pounds, another 12 pounds less than my last record low, and a full 52 pounds less than my normal weight.

Anyway, while the computer lab here at the hospital is fun, this is the first time I've felt up to coming here. If you want to get regular updates on how I'm doing, check my dad's blog at penmachinedad.blogspot.com if you haven't already. He has something new every day.

My family (especially my wife and parents) and friends have been unbelievably great, as have the hospital staff. My friend Simon is also in the same hospital, five floors down, following heart surgery, so we're continuing to be PKBF (painkiller buddies forever), although now the painkillers consist mostly of Tylenol and coffee. He's using the computer next to this one right now.

I may go home as soon as Monday, but we'll see. In any case, I'll be back soon enough. Thanks for continuing to check in.

Labels: cancer, family, friends, hospital, ileostomy, morphine, pain, surgery

Labels: cancer, colostomy, hospital, ileostomy, moleskine, surgery, vancouver

Labels: cancer, colostomy, hospital, ileostomy, surgery, vancouver, video