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

I haven't written all that much about my cancer treatment recently, but that's not because things are winding down. Rather, it's simply grinding along as it has since mid-October. Every second Wednesday I go to the B.C. Cancer Agency, take some blood tests, maybe see my oncologist, and then sit in a chair for a few hours while various chemotherapy poisons are fed into my bloodstream. At the end, I'm hooked up through the same IV to a "baby bottle" of 5-FU chemo, which I take home and keep on for 48 hours.

Two days ago was one of those Wednesdays. In a way I'm lucky to have been an insulin-dependent diabetic since 1991. Needles don't bother me. That was good on Wednesday, because in the morning I took two different insulin shots, then had blood drawn for tests, then took some more insulin with brunch, then got plugged into the chemo drip, then had an atropine injection to avoid some side effects, then took more insulin at dinnertime, then took two more insulin shots at bedtime, then finished off with my daily blood thinner needle.

So what's that? Ten needles in one day, some to take fluids out of my body, others to put them in. Whew. And I'm not even counting the finger pricks I do at least four times daily to test my blood glucose. Lots of people don't get that many needles in a year. Today I get the bottle taken off, which is always a relief. (I can't get my chest wet while the chemo is on because of the needle taped to my body, so my Friday post-unhook showers feel amazing.) This will continue until at least late March.

If you met me on the street, other than my increasingly-scraggly hair, you'd be hard-pressed to know I was a cancer patient until I told you. Or unless I let you examine my fingers and inner elbows and chest for all the needle and lancet scars. So it's pretty hard for me to forget what's going on.

Labels: cancer, chemotherapy, diabetes, pain

You know what's worse than having a hangover? Having a hangover when you didn't drink any alcohol. Last night my wife and I trekked to a pub in North Vancouver to see our pals in the Adam Woodall Band—I've played in other bands with Adam over the years, and also used to run the AWB website, so we like to see them when we can.

It was my first outing to a bar in a long time. We had lots of fun at the Queens Cross Pub, and the band was excellent, as usual. In addition to being designated driver, I'm still on chemotherapy, so it's not wise for me to get drunk. Indeed, I chose not to have any alcohol and all, sticking with Diet Coke and coffee, plus some fine Buffalo chicken wings and a steak sandwich.

Yet today I feel like complete crap. I woke up near noon with a headache, low blood glucose, body aches—all the symptoms of a hangover. So I'm paying the price, though I'm not sure what the price is for. The chemo makes me less resilient to staying out late than I used to be, I guess. Still, I'm glad we went.

Go buy the AWB's album Silver Ring, by the way. It's good.

Labels: band, chemotherapy, music, pain

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

It's not all that likely that any of the long-term side effects of chemotherapy (fatigue, hair loss, numbness, etc.) will show up on the first day, so it's no big surprise that I feel fine tonight after a few hours of medication at the Cancer Agency, and now a slow-infusing "baby bottle" hookup for the next two days. Here's the bottle:

Here's me wearing it:

I did have a bit of reaction at the Agency, but rather than the worst-case diarrhea, I merely developed a slightly runny nose and clammy, sweaty skin, which Lisa the nurse quickly handled with some atropine injections. Oddly, my blood pressure was also quite low (105 over 50 at one point). The systolic value isn't strange for me, but my diastolic is usually more like 70 or 75.

I'm also not sure whether I felt nausea. I was a little bleah a couple of hours after dinner, so I took an extra anti-nauseant just in case, but so far I feel much as I did yesterday. We'll keep an eye on that stuff.

For today's wacky links, we have:

• Vintage colour TVs (in the mid-1950s, a 19" colour television would set you back about $1100 USD—in 1950s dollars!)
• How to identify your iPod model (Apple has released between 32 and 34 in six years—the exact number depends on whether you count the latest Shuffles as new, and if the iPhone is an iPod or not)
• Colorectal cancer death rates are dropping (good news for me)
• Aquisition 2 is out
• Good quote: "Teaching biology without mentioning evolution is like teaching astronomy without mentioning gravity."

Labels: apple, astronomy, cancer, chemotherapy, evolution, fatigue, iphone, ipod, pain, science, television

About 13 hours from now, I start a new six-month round of chemotherapy, my first such treatment since back in May. This batch is intended to try to shrink the metastatic tumours in my lungs that spread from the original cancer in my intestine, which was removed in July.

I'm having a whole new fun regimen codenamed "GIFOLFIRI," which involves irinotecan (Campto), folinic acid (Leucovorin), and our old friend 5-FU. No oxaliplatin as far as I can tell. The irinotecan is the nasty one this time around, with risks of hair loss (maybe, not for certain, but I don't care much) and possibly drastic diarrhea, which can be treated, but only about 15% of patients get it, so they don't give the antidiarrheals to everyone. They're also giving me bevacizumab (Avastin, an artificial monoclonal antibody) again to see if it can slow or reverse the tumour growth.

All of that is for the metastases in my lungs, of which I believe there are four, and which are still small and not growing too fast. (I've noticed no decreased lung function, although I haven't been doing really strenuous things such as bike riding like I used to.) I'm just not sure how I'll react, or how I will feel in a few days.

On a cheerier note, I've been enjoying these old TV theme songs (via JWalk), especially S.W.A.T. and of course the immortal Mission: Impossible (MP3 files). And crazy people who jump off mountains are fun to watch too.

Labels: cancer, chemotherapy, extremesports, fatigue, pain, television

I received an email today from someone who has both had cancer and been a close relative of someone who died from it. She reinforced, like others did, that being the relative was much more difficult.

Almost every day, my mom tells me of emails or letters or phone calls from people—some of whom I know, some of whom I've never met or hardly even know about—wishing me well and offering sympathy and support and whatever help they can. My parents and my in-laws, my aunts and uncles, my cousins, parents of my children's friends, and most of all my kids and my wife—all have done that and more.

My relatives and friends probably need as much support as, or more than, I do, because much of the time they feel there is little they can do. They send me suggestions, and help me when I feel bad, and pick up the huge amount of slack I'm leaving when I'm sleepy or sick. But they can't cure the cancer, can't even fight it the way I have to. They are spectators, and that must be hard.

So cheers to all of you. I don't often thank you the way I should, but I think you might understand why I'm a little distracted most of the time.

Labels: cancer, chemotherapy, ego, family, friends, pain, surgery

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'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

As I've mentioned, even six weeks after my surgery I continue to have some pain for which I'm taking codeine. This past Monday I had another CT scan, ordered by my oncologist Dr. Kennecke, to see if there was anything wrong.

Today I found out that there is something wrong, but in the scheme of things it is very minor and nothing to worry about, which is a great relief both to me and to my family. As Dr. Kennecke wrote in an email...

...there is a fulid collection beside the anastomosis and a fistula (a connection between the bowel and the fluid collection beside the bowel). Unless there evidence of infection, It does not look like this needs to be drained, as it seems to be draining itself.

So, depending on what his consultations with my surgeons reveal, it may or may not be useful to drain the buildup. But it's not a tumour—not more cancer, which of course was a worry. If all I need is a nasty needle to drain some fluid, I can handle that.

Funny how chemo and radiation and surgery and complications can make a potential fluid-draining needle seem like a small thing now. Last year a procedure like that would have seemed like a big deal.

I'm also pleased that my piped-in video appearance at Gnomedex went over so well with so many people, including Scott Rosenberg, someone whose work online I have admired for a long time. Organizer Chris Pirillo has some great things to say about his event overall:

Gnomedex is just about as close to a un-virtual blogosphere as I’ve ever seen it. [...] How does one attract the blogosphere’s thought leaders without hammering through the topics that are (quite frankly) already yesterday’s news—or completely irrelevant to people who don’t live and die by whatever is on TechMeme or its vertical equivalent? How does one equally attract those who are striving to become thought leaders, or those who love following those thought leaders?

One thing that makes Gnomedex worthwhile is that Chris, even just a couple of days afterwards, when he could just be sleeping it all off, is working hard to figure out how to make it better next time.

Labels: cancer, family, fatigue, gnomedex, pain, surgery

We've done a lot in the past couple of days—or a lot for me, anyway. Yesterday I not only visited the Pain Clinic at the B.C. Cancer Agency (where I got a prescription for some longer-acting codeine so I don't have to take Tylenol 3s so often), but then went for dinner with my family at the mall and got myself a haircut. We were out of the house for more than five hours, which is my longest outing since the beginning of July.

I paid for it later with some pain in the middle of the night, but it was worth it. Similarly, today we visited the Agency again, where I talked to a social worker and generally got some stuff off my chest. But a couple of hours away was enough today, and I had to come home and lie down once more.

But I'm gaining weight steadily, despite the fatigue, close to ten pounds already. The steps are small, but they are steps. It's like coming back to life, bit by bit.

Labels: cancer, family, fatigue, food, pain, surgery

As of today, it has been one month since my colon cancer surgery. It seems like much longer. In that time I have been in the hospital for a week, out for a few days, back in for another ten days, and now home again for a little over a week.

A community health nurse visited again today. He examined my bedsore, which is healing fine, and generally checked me out. He reminded me that healing and recovery will be very slow—that with my ileostomy, I am absorbing food less efficiently than before, and after my spring radiation and chemotherapy treatments, tissues take extra time to mend as well.

So it feels very slow to me, and I feel guilty sleeping much of the day, but the medical professionals think it is all normal. My body has been through a lot, and I am gaining weight gradually. Each day I try to walk a bit, and to eat heartily, so I will get better very gradually. I still do not feel or look like myself, but I will come back. I know it's hard on my family too, but it is reassuring to know that nothing is seriously wrong.

Labels: cancer, family, fatigue, food, pain, surgery

Last night my wife and I went out for dinner for the first time in about a month, since before my major colon surgery on July 6. It was both a success and a failure. Or, more accurately, it was a good test.

We hired a babysitter for a few hours and chose our nearby Cactus Club Cafe, where I had some delicious cheese toast, grilled salmon, and mashed potatoes. (I had to skip the rice pilaf because during my recovery I need to avoid high-fibre foods like brown rice and nuts of all sorts, which can create blockages.)

I also drank a pomegranate cosmopolitan martini and a mojito. Everything was delicious, and I had a great time, even though I still have to bring a pillow to sit on.

However, earlier in the day my surgeon, Dr. Phang, had prescribed me some Tylenol 3 pills with codeine to help alleviate some of the pain I'm still having. As I half-expected, just as we were paying for the meal, the combination of the two drinks and the T3s kicked in, and I felt extremely light-headed sitting at the table.

My fantastic wife knew what to do, of course. She told me to put my head down to my knees, which I did, and I immediately felt better. Then she went to the car and retrieved the wheelchair we borrowed from my parents yesterday, and wheeled me out of the restaurant. I lay down in the back seat of our car and we drove the three minutes home, skipping our planned trip to the mall. Instead I went to bed and watched TV. Later we watched The Bourne Identity and I made some plans to give a remote video talk to the upcoming Gnomedex conference next week.

I didn't find what happened at the restaurant at all embarrassing, by the way. I'm way past embarrassment at any of this stuff. It was an experiment, in a way—what are my limits right now? I know I can eat a good meal in relative comfort. I know the Tylenol 3 works. And I know it does not interact well with booze (though I was pleased not to feel nauseated). So I should lay off the drink for now, at least if I plan to stay upright.

It was a damn good martini, by the way.

Labels: cancer, food, pain, restaurant, surgery, wheelchair

Last week, when I had a nasogastric tube on my face to drain my stomach, the clip that held the plastic hose accidentally injured my nose. I was still on morphine at the time, so while it felt like I'd been punched in the face, I didn't really care.

A couple of days later, when we removed the bandage, the nurse who'd put it on was a bit horrified (and quite apologetic) at what had happened. Today the last of the scab fell off, and now I have a couple of nice craters in my nose:

So now I look like I've been punched in the face too. Battle scars!

Labels: cancer, morphine, 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

Feverless chills, shivers, and sweats. Mild nausea, twitches, abdominal pain, amazing fatigue. It's hard to eat much, but I'm keeping it down. I've moved into our adjustable hospital-style bed and propped my head up. Every two days, I reduce the morphine dose that I take every four hours. I have to ride it out, ride it out, and I will.

Labels: cancer, morphine, pain

On bad days, like today, I feel like nothing but a generator. The only things I generate are pain and shit, and I pour them into the world—as if the world needs more!—spending the rest of my time sleeping, and eating when I can, and in today's case intermittently reading a book while lying cramped up in bed.

It doesn't seem fair. Yesterday was a great day, when I played drums with the band for the first time in six months, and had a wonderful time, and went to bed feeling good. But then today I was a total wreck, unable even to unpack my snare drum from the car, or read my email, or open the mail, or answer the phone. Or maybe that is fair: good day, bad day. But fairness is a human concept, and a disease like my cancer knows nothing of it.

I hope tomorrow is better. It almost has to be.

Labels: band, cancer, music, pain, radiation