Thursday, October 30, 2014

I Just Want to Make You Kosher

Chemotherapy is messing with my food.

I've written before about the dead Tin Man flavor that chemotherapy creates, but now it's gotten to the point that even if I don't have that weird taste in my mouth it's affecting the way food tastes. I realized today that chicken no longer tastes like chicken. 

I miss chicken. In fact, I miss all the foods that no longer taste like food. And not just the foodie foods. Even crappy food, loaded with additives,* fats and sugars to make it appealing (see, for example, the Spicy Italian sandwich at Subway), can't get past whatever the chemo drugs have done to my taste buds.

Of course there's always oatmeal... and mac and cheese... and PB&J. But I'm getting kind of tired of oatmeal, mac and cheese, and PB&J. 

I just hope my taste buds eventually come back when the chemo's over. I figure the hair's a lost cause, but it would be nice to be able to enjoy food again.** 

P.S. For those who have no idea what the title of this post has to do with anything, check out 1979's The Frisco Kid, the only movie I'm aware of that had Harrison Ford playing a sidekick to Gene Wilder (or maybe it was vice versa -- it's been awhile).

* Speaking of food additives, if you want to see a hysterical take down of the sugar industry, and its relationship with, among other things, Clamato, check out this recent bit from HBO's Last Week Tonight:

** My apologies to all the vegetarians who were offended by my discussion of chicken as food. 

Wednesday, October 29, 2014

There Is No Spoon, er, Chemotherapy

As bad as last week's cycle was, I feel surprisingly good this week. Not really tired, almost able to drink iced beverages, and a fairly minimal impact from the rest of the usual side effects. I was even able to make it all the way through a normal workday (and then some), despite IT's ongoing inability to make my computer work properly.*

But here's the weird thing: As good as I feel, every now and then my brain will go, "Next week is another cycle," and all of a sudden I'll feel really, really crappy. It's like I get all of the chemotherapy side effects, without the chemotherapy. Sort of the opposite of the placebo effect: like a sugar pill can cure you, nothing but the expectation that you will be sick can actually make you sick. 

Aren't our brains fun?**

But the question is: if it's only some weird brain wave that's making you feel terrible, how do you get rid of that brain wave -- especially when you're fully aware that it's just a brain wave and it's still making you sick? Where's Laurence Fishburne, with his blue and red pills, when you need him?

* Under normal circumstances, chemotherapy + IT issue = early departure from work. 
** I was Philosophy major as an undergrad, and the phenomenology courses were always my favorite. 

Just In Time For Oktoberfest

Today's milestone: the return of beer (well, until the next cycle). Provided I take the following steps, it's once again possible to drink beer:

1. Wait until my throat stops seizing if I drink anything colder than lukewarm water.

2. Wear a glove and use a towel to remove the bottle from the refrigerator and get it open. Under no circumstances touch the bottle with a bare finger.

3. Pour the beer into a room temperature glass that's large enough to have at least an inch or two of glass that doesn't touch the beer.

4. Wear a glove and only touch the part of the glass that isn't touching the beer.

5. Drink the beer very, very slowly. 

In the words of Homer Simpson, "To alcohol! The cause of -- and solution to -- all of life's problems." 

Tuesday, October 28, 2014

And Now a Word From Our Sponsor

Not really, but I did want to say some nice things about Nest.* I bought one of their first generation thermostats years ago when it first came out, and loved it. I've moved my Nest to two subsequent residences, including my current home which uses radiators. For a year, the Nest worked as well with the radiators as it did forced air, but during my recent Cycle 7 bedridden stage I noticed the thermostat had stopped working (which is to say, I was cold and tried to turn on the heat but found a black screen instead of the soothing and informative orange I was expecting). 

Based on my experience working with their technical support folks to try to get the heat back on, I'd say Nest could write the book on the correct way to handle customer service. Even being on hold wasn't bad, with a fairly continual flow of information about where I was in the queue, how long I could expect to wait, and where else I might be able to find answers to my questions. And the humans I talked to were universally helpful, and able to quickly identify the appropriate next problem-solving step or answer my general questions. 

Moreover, when it turned out that one of the wiring connections in the base the thermostat sits on seemed to have failed, they sent me a completely new second generation thermostat to replace the entire works. This despite the fact that, technically, they could have just had me move the wire to another, essentially redundant, connector. But the tech support guy was pretty clear that they didn't just want the Nest to work, they wanted it to work right. Incredible. 

(After the day I had today, I'm wondering if Nest tech support offers tours. I'd love to have my employer send our entire IT department in the hopes they might see how this work is supposed to be done.) 

In any case, now my condo is warm again, which is incredibly helpful when trying to avoid chemo-induced neuropathy.

So if you're looking to replace your thermostat, I'd definitely recommend the Nest. It's a great device and, in the unlikely event you have problems, the company provides world-class customer service.

We now return you to the regularly scheduled cancer blogging. 

* No, they don't pay me. This blog is entirely sponsored-content free. 

Monday, October 27, 2014

Not So Magnificent

I am hereby revoking seven's status as a lucky number. Seven is not lucky. Seven is not magnificent. Seven is deadly sins, and layers of hell. Seven, quite frankly, sucks. 

First seven shows up pretending to be eight, and then it turns out to be an absolutely horrible chemotherapy experience. Between the completion of Wednesday's infusion and Sunday afternoon (call it ninety-six hours), I figure I must have slept for somewhere in the neighborhood of eighty of those hours. My colleague calls it sleeping like a baby: you're awake for an hour or two, then take a six hour nap; wake up for another hour or so, and go back to sleep for another five or six hours; and the cycle just continues -- for four freakin' days. 

Maybe it's just me, but I find it hard to call lying in bed for days on end "living." 

And it doesn't help things that those two hour bits where I'm actually awake and conscious are basically pretty terrible. The weather's gotten cold enough that just standing outside for a minute or two is enough to set off the neuropathy, even wearing gloves. Walking home from the clinic I was only outside for thirty seconds or so before the pins and needles started, and by the time I made it the four blocks home my fingers were pretty much in agony. Even now, just trying to get in my house is painful in that to get the keys out of my pocket I've got to take off a glove, and by the time I unlock the door and turn the cold door knob, my fingers are screaming.* 

Then there's the being repulsed by food; the not being able to tolerate anything colder than the (very warm) side of room temperature; the gastrointestinal distress that would make Montezuma cringe; and my new favorite, chemo-acne. Who knew that when push comes to shove, if it can't figure anything else out, your body will try to push the toxins through your skin? Good times...

Is it any wonder that I'm giving serious consideration to calling this whole thing off? I saw my neighbor this weekend and learned that he's now going to be on chemo for the rest of his days. I can't even begin to imagine, and it sure isn't anything I plan to sign up for. 

But for now, I'll wait for cold beverage tolerance to return**, review my open enrollment options to see if there's anything that might provide more options than Group Health's never ending chemotherapy, and gear up for cycle eight. 

I can taste the metal already -- or maybe that's just the leftovers from Cycle 7. Who knows anymore?

* We're not even officially into winter yet, and I can already tell you that I won't be finding it much of a wonderland. One of the seven -- see! -- layers of hell maybe, but not a wonder. 

** I need a beer. 

Wednesday, October 22, 2014

Traffic, Weather, Time, Expectation and Reality

The conversation at the oncology reception desk reminded me of an issue I've been thinking about for awhile...

So a person finds a place to live and a place to work. For most, there's some measure of distance between those two places and so getting to work requires a commute. From what I've been able to observe, it seems that people generally look at the map, maybe drive the distance once (likely in the middle of the day), decide how many minutes they think their commute should take, and then forevermore they assert that they have an X-minute commute.

But how many times does the X-minute commute have to take Y-minutes before that person decides they actually have a Y-minute commute? It seems the answer is infinitely many. This is to say, the person will never actually revise their mental estimation of how long their commute is, irrespective of their daily experience.

The number of cars on the road can double, the state can tear up every road between home and job, and global warming can turn the weather patterns upside down, but "I have a twenty minute commute, dammit," and the fact that 80% of the time it actually takes forty minutes isn't going to change that.

Weird (but easy for me to say, as I can walk to work). 

The Cycle 7 Chemotherapy Liveblog

Here we go again. Round eight seven. Hopefully, eight seven will be a lucky number.

Not so much on the IT front, however. Once again, the GHC network doesn’t really want to cooperate so I’m forced to liveblog in Word with the hope of eventually being able to paste this into the blog if and/or when I can get on a network.

Oh look. The network has suddenly appeared. So "live" is kinda, sorta actually live -- at least for now. Anyway...

8:27 am
Various body fluids have been sampled, and I'm checked in for the meeting with my primary oncologist. Just waiting for the lab results and, quite likely, the providers to appear. (As usual, traffic in Seattle is a problem and I've already overheard staff here talking about the staff who are late due to traffic issues.)

8:35 am
Now I'm in the exam room waiting on the doc, who is no doubt still waiting on labs. But I did see her walk in so at least traffic won't be an issue. This time my weight was 224, which, if I recall correctly, means I've lost two pounds since my last visit. Clearly, wasting away will not be one of the side effects of my chemotherapy. 

9:00 am
Crap! The oncologist just informed me that I can't count. This is only Cycle 7. I've got at least four more after this, not three. I am now totally bummed -- both by the extra cycle I didn't think I had, and by the fact that I'm clearly mentally challenged. The last liveblog even said Cycle 6, so how did I manage to convince myself this was number eight?

Oh, and the oncologist also confirmed the long-term plan: complete twelve (or eleven -- eleven was okay) cycles of chemo, go off chemo for (with luck!) six months, then start the chemo back up when the cancer starts growing again. 

That is not a good plan. I want a different plan. 

9:28 am
Still waiting on the pharmacy to mix my drugs. But all the psychosomatic symptoms are starting up. At this rate, they won't actually have to give me the drugs to make me feel terrible. My brain will handle that all on its own. 

9:52 am
The drugs -- well, the first drug -- has arrived. We're off to the races. 

10:21 am
"Races" is the wrong word, unless you're talking slug races. I already feel terrible and slow. 

10:35 am
Chemo drugs have started. Two hours for these -- and this time both seem to be dripping at the same slow pace. Ready to be at home in bed. Even without the chemo, this would be a good day to spend in bed -- rainy and disgusting. This, by the way, is the view from my chemo chair:

The raindrops on the window may or may not be showing clearly, but in real life there's a lot of them. 

11:18 am
Nothing new to report at this time. 

11:24 am
I've just learned that I'm too big for the chemotherapy chair. The chair is like a manual dentist chair or recliner. Lean back, and the bottom of the chair rises up to support your legs -- at least in theory. My legs are so long that the weight of them throws off all the counterbalancing so there's no way to actually lie back in the chair. It's sort of annoying. 

Update: I found a workaround. If I lean back so the bottom of the chair comes up, and then pull another chair under the bottom of the leg support so it can't drop back down, I can recline. Of course getting out of the chair with another chair wedged under it may be somewhat challenging. Here's hoping there are no earthquakes, fires, random shooters, or other emergencies that would require a quick exit from this chair. 

12:37 pm
Tired and miserable, but basically done. Nurse is hooking up the pump, and then I'm off to go home and go to bed. Chemotherapy sucks, and this liveblog is over. 

Monday, October 20, 2014

And Another Thing...

A few weeks back I climbed on my soapbox to complain about the state of healthcare in America. I have an addendum. 

Open enrollment has just started at my place of employment. I thought it was bad before, but how on earth do you make sense of your options when you're dealing with something like cancer. 

Do you change plans, and risk turning your treatment plan on it's head, or do you stick with the provider you've got so as to stay on the same path?

How do you decide which provider provides the best option when you have no idea what phase two of your protocol is? Presumably, the oncologists have something in mind for when the chemotherapy stops, don't they? 

Presumably, the one-year plan is going to be different from the five-year plan or the ten-year plan. But how do you decide which provider is the best fit for your plan when you don't know which option you're going to get?

It was bad enough as a diabetic, but as a diabetic cancer patient, making sense of the options is asking a lot. 

Ah, who am I kidding? I'm going to do what I always do: ignore the issue entirely until enough time passes that the choice is made for me, at which point I'll just complain about whatever was built into that default option. 

So here's my addendum: Open enrollment is a tool of the devil. 

As Kevin Drum,* tongue firmly planted in cheek, repeatedly asserts,  "Best healthcare in the world, baby."

* Political blogger extraordinaire, currently affiliated with Mother Jones

Bad Math

This is, of course, chemo week. Last week was Cycle 7 and for some reason I had it my head that it was the halfway point, but it's really not. If I can stick to my decision to limit chemo to eleven cycles, I'm down to my last four. 

With just four left, I'm more like 2/3 of the way through than half. 

And I like four. Four fits on one hand. Four is one away from three, and three is just a hop, skip and a jump from zero. And I really like zero. So while i'm not at all excited for this week's cycle, I am excited to get down to my last three. Frankly, last week I was ready to just throw in the towel and call this process done. I was tired of feeling lousy, and tired of not being able to drink iced beverages.* But three more cycles I can do, and since after this week I'll be down to three I might as well go ahead and get through this week. 

And, yes, the thinking prompted by chemotherapy is a lot like negotiating with a toddler. It's not terrible logical, but it gets the job done. 

* I'm really starting to miss margaritas and sidecars -- neither of which is the same at room temperature. And then there's Tully's espressso shakes, which are also quite tasty and also impossible to drink while under the influence of neuropathy-causing chemotherapies.**

** Yes, it is sort of sad how much I'm impacted by the impact of chemotherapy on what I can eat or drink, but at this point eating and drinking are pretty much all I have left of the enjoyable parts of life.  

A Place To Be

For those who weren't here to experience it, we had a sunny Sunday in Seattle. Perhaps one of our last of the year. And since the Seahawks have decided to play like the team they were a decade ago rather than the team they were last year, as a half-assed fairweather fan I decided to give up on the game and go outside instead. 

Good choice. Unlike the game, the outside was lovely. 

I went to Discovery Park, a place I hadn't been in a decade or so. My mistake. Discovery Park is really quite a nice place to spend some time, especially on a sunny autumn afternoon. 

I was, of course, the odd man out, walking around by myself in my coat, hat and gloves (to keep the neuropathy at bay). Most of the folks I saw were in T-shirts and/or shorts, and wandering around in various groupings (couples, families and conglomerates). But I didn't see anyone that wasn't having a good time, dogs and toddlers included. 

Plus the park has a lighthouse. As I learned from the XS, everything's better with a lighthouse. 

My only complaint with the park was with the "Reflecting Ponds." I wandered toward them thinking they would contain reflective water, but the algae made that pretty much impossible. Apparently, "reflective" was meant as more of an internal thing; an instruction, perhaps, rather than a description.

Trust me: the last thing a cancer patient needs is an instruction to be reflective. It pretty much comes with the territory. 

But it was a nice pond. 

A Requested Update

Once again, I've fallen behind on posting. It's a combination of having nothing new or interesting to say about cancer, and having a new Xbox game that's sucking up all my free time (as well as some of my non-free time). But earlier today I was asked to do an update so that the car crash would stop being the first picture loaded.

So M., this one's for you.

And I'll actually write something meaningful in a few hours. I just have to eat dinner and get past this current level...

Thursday, October 16, 2014

Just What We Need: Another Metaphor

So Cycle 6 was ugly. The cycle weekend was by far the worst I've experienced. But oddly enough, by Monday evening it had pretty much passed. So while Cycle 5 was sort of awful but really long in duration, Cycle 6 was really awful but fairly short in duration.

Sort of.

Today, out of nowhere, Cycle 6 was back with a vengeance. The day started off fine but by lunchtime I had to throw in the towel, leave work and come home and go to bed. 

Weird -- and annoying. And a little like a car accident, where you're driving along minding your own business and the next thing you know there's an SUV on your head

One thing you can say about cancer: it's unpredictable. 

Sunday, October 12, 2014

Cycle 6 Weekend Summary (a.k.a., There Will Be Blood)

I'd call this the Cycle 6 summary, but I fear Cycle 6 isn't over yet. I still feel like complete crap, I still have zero energy (exacerbated by the fact that eating is repulsive), and there's no sign of things letting up anytime soon. And then my fingers and toes still hurt, so much so that I had to abandon an effort to eat some leftover fried chicken as holding the wing, or whatever the hell it was*, while I tried to eat it made my fingers hurt like hell.

Oh, and I got a new side effect this weekend to add to the mix of everything else: bloody noses. The drug information sheets promised that Avastin or one of them would start me bleeding, and that kicked in at about 4:00 am on Sunday morning. Of course, the good news was that due to the insomnia I was already awake (though still laying in bed), so I didn't ruin a sheet set waiting to wake up and notice the blood pouring out of my nose.

But when the good news is that your insomnia and bleeding coincide, you need to re-evaluate your perspective. 

And at this point, re-evaluating is about all I do. The longer this goes on, and the worse it gets, the harder it is to persuade myself that it's actually worth it. 

* There's a lot to be said for Ezell's fried chicken, sort of a Seattle icon, but for whatever reason, with the exception of dumsticks, the way they cook their chicken makes it almost impossible to tell what it is you're picking up. 

Thursday, October 9, 2014

Cycle 6, Day 2 Summary

I believe the long-promised cumulative effects of chemotherapy have finally cumulated. This was not a great day. 

The problem started at 2:00 am when this cycle's surprise side effect -- insomnia -- kicked in. I got to be awake from 2:00 am until 5:30 am when I gave up on making it to work and went back to sleep instead. I slept until 3:00 in the afternoon, which was therapeutic but sort of counterproductive.

Shortly after waking up, I was surprised to find that my neuropathy has now expanded to my feet. So now I get painful tingling in both my fingers and my toes. Big fun. But as long as you don't go barefoot, it seems to stay more or less under control. So now I just have to continually wear gloves and slippers. 

Aside from that, it's pretty much been a rerun of the five previous cycles. 

I'm growing tired of reruns. 

Wednesday, October 8, 2014

Things That Are Better Than Chemotherapy

Driving the Roadster down a back road with the top down listening to the Refreshments at very high volume -- that's better than chemotherapy.

Happy hours are better than chemotherapy.

Birthday dinners at really good Italian restaurants with your friends are better than chemotherapy.

Live theater -- particularly ambitious, flawlessly executed live theater -- is better than chemotherapy.

Visiting the Musee d'Orsay (forgive the missing accent mark -- I can't figure out how to modify the character set with Blogger) and seeing the Van Gogh originals up close and unimpeded (well, except for the crowds) is better than chemotherapy.

Christmas morning with smallish children is better than chemotherapy.

Rollercoasters are better than chemotherapy.

Hiking any of the trails along the Mountain Loop Highway near Granite Falls is better than chemotherapy (though I don't recommend Mt. Pilchuck as the trail to start with).

The ferry ride from Istanbul to Kadikoy (forgive the missing umlat) is way better than chemotherapy. 

Dinner at most any restaurant in Portland is better than chemotherapy (but my current recommendation would be Veritable Quandary). 

In-N-Out burgers -- I recommend the double double animal -- are better than chemotherapy. 

Seeing The Matrix for the first time, and before the sequels came along and retroactively ruined it all, is better than chemotherapy.

But now that I think about it, I'm looking at this the wrong way. So here's my revised and updated list of things that are better than chemotherapy...

Cleaning the toilet is better than chemotherapy.

Root canal is better than chemotherapy.

Major surgery is better than chemotherapy.

Divorce is better than chemotherapy.

In short, pretty much anything is better than chemotherapy.

The Cycle 6 Chemotherapy Liveblog

After a series of technical difficulties -- i.e,, I couldn't get on the Group Health network -- the Cycle 6 liveblog can finally start.

A quick rundown on the events so far...

Today's chemo companion is Sib2, who unfortunately locked his keys in his truck when he got to my condo. Sib2, like me, drives a convertible and was swapping his jacket for a lighter vest and inadvertently left his keys in his jacket pocket when he shut the truck on his jacket. This would be less of a problem if the top of the car wasn't also in the truck. Hopefully, the car will still be there when today's chemo cycle is over -- and hopefully it won't rain.

IHOP, today's breakfast destination, was out of avocado. Sib2 and I were both going to have the avocado, bacon and cheese omelette, but the waitress was very surprised to see avocado on the (new) menu as they didn't actually have avocado. We learned a lot about the IHOP menu development procedures in the course of ordering our (avocado-free) omelettes.

I also learned that it takes longer for the GHC lab to run a test for urine protein than it does the related blood test, as the latter test was not available to the oncologist. But, since the trend wasn't that terrible, I was cleared for another round of Avastin (joy).

And with that, we're pretty much up to date. I was just given a variety of painkillers and anti-nausea medications, and now we're just waiting for the chemo to be delivered. 

10:24 am
Waiting. The order for the chemo just went in, so this will likely not be an early day.

10:46 am
The Avastin has started, and my head is already pounding. Psychosomatic symptoms are the best. (Yes, that was sarcasm.) Thirty minutes and counting...

10:58 am
Sib2's spouse has brought the spare key to his car, so he's off for a bit to put the lid back on it and move it to a legal parking space. Since I am now by myself, I will spend the time articulating the things that are better than chemotherapy.

11:28 am
Avastin is done and now the chemo is flowing. Two hours for this one. And my head is still pounding. I'll give it half an hour then ask for another round of painkillers. Oh, and the dead Tin Man flavor is back in my saliva again. Bleeh...

11:50 am
Finally, something interesting happens. Somehow, the infusion pump on the chemo got set to push drug at an accelerated rate -- about four times faster than intended. Luckily, Sib2 noticed and we called a nurse. They stopped the pump and are not conferring with the pharmacist to find out a) what the risks associated with fifteen minutes of infusing at a 4x rate are, and b) what they should do about it now. 

Who knew a chemo infusion could actually be eventful?

12:01 pm
It's all good. Apparently there's a clinical trial being conducted somewhere that shows that my particular chemo can be administered over thirty minutes (rather than two hours) without problem. However, since it's only one study GHC follows the standard two hour protocol. But we don't need to worry that my infusion got off to an accelerated start. 

Unfortunately, they've now slowed everything down so it'll still take two hours despite the fact that the bag was half gone after fifteen minutes. 

12:13 pm
My chemo neighbor has opted for hospital food. I have to admit, it smells really good.

1:14 pm
Well, that's about that. The nurse is about to hook me up to the portable pump and I'll be off. So let's call this one done. Time to find lunch...

Cancer Is Depressing

It's been more than a week since my last post. This is because a) work and life have been busy, and b) cancer is depressing. Sometimes, you just don't want to think (or write) about it. 

But then the next cycle comes around and you're right back in the thick of it. 

Tomorrow is Cycle 6. Officially, I'll be half way through when it's done. Unofficially, I'll be 6/11 of the way through as I don't think I'll be bothering with Cycle 12. 

As usual, I'll liveblog Cycle 6. And as usual, I expect it'll be pretty uneventful.