Monday, September 29, 2014

Cycle 5 Summary

I love this image -- for those whose devices make it hard to read, the caption is "Rock Bottom: You'll know it when you get there" -- but it's actually wrong. When it comes to chemotherapy, you don't know where the bottom is because there is no bottom.* Any and all of your symptoms can, and mostly do, always get worse (though to keep you guessing, they can also get better). 

Thus, while the weekend of Cycle 4 had me bedridden, Cycle 5's weekend wasn't so bad. I actually spent most of Saturday far from my condo. At the same time, the various flavors of neuropathy were the worst they've been this time around. 

But at this point I think the primary side effects of Cycle 5 have either passed or have reached the point of stability, where they aren't going to get better before Cycle 6 exacerbates them further. So Cycle 5 is basically done. 

And at least the weather's changed so hot tea is a reasonable drink alternative to cold anything. Hot tea also has the advantage of covering the taste of dead Tin Man better than most other beverages. 

So perhaps the peoples of the United Kingdom have it right after all. Perhaps a cup of tea really is the cure for everything. 

*Well, I suppose the chemicals could kill you -- which would, in fact, be rock bottom -- but since you'd be dead you wouldn't actually know you'd reached the bottom. Therefore, my premise holds. 

Number Theory

Today I plugged my remaining chemo cycles into a calendar and I was surprised to learn that at this point the oncologists expect to pump me full of toxins for the rest of the year. My last cycle is literally scheduled for New Year's Eve. 

Maybe it's just me, but July 30 to December 31 strikes me as way too long to be undergoing chemotherapy. And when I think New Year's Eve events, I don't really think chemotherapy. Party? Maybe. Dinner? Sure. Chemotherapy? Not by a long shot. 

So given that a) I am completely and totally unwilling to extend my chemotherapy (which, recall, is not intended to cure me) into 2015, and b) I am not spending New Year's Eve being poisoned, I'm thinking it's time to rethink the twelve cycle protocol. According to the the last oncologist it's just a guideline anyway, so maybe eleven is just as good a guideline. 

Besides, I've always liked the number eleven. Ocean's Eleven was a pretty good movie. 7-11 stores are very convenient when you need a quick sandwich or a package of Ho Hos. Spinal Tap's amplifiers went to eleven. Eleven is the atomic number for sodium, which is a pretty useful element. Eleven's a good number. Eleven cycles of chemotherapy ought to be good as well.

And let's not forget that twelve already has a plenty significant role in the universe. Twelve months in a year. Twelve hours on the clock. Twelve signs on the zodiac. Twelve function keys on a PC keyboard. With the minor exception of our numbering system, twelve controls everything. 

Eleven needs me. Twelve couldn't care less. It's always nice to be needed. 

Thursday, September 25, 2014

Cycle 5, Day 2 Summary

Frankly, my conversation with the Cycle 5 oncologist depressed me, and I think that may be impacting my reaction to the chemo. A clarifying email to my primary oncologist is probably warranted, but I can't work up the energy to deal with it. 

Anyway, the rundown of the Cycle 5 side effects is pretty much a repeat of what's come before, just more intense. I'm tired, my digestive system is having a very rough time of things, my fingertips are killing me, and the ice reaction has been upgraded to a reaction to anything even mildly cold. I tried eating some yogurt this morning and wound up having to throw it away. The nerve endings in my mouth just couldn't take it. 

The other big problem today was feeling too good to stay at home, but too poorly to go to work. What to do? In my case, I dragged myself to work, but it didn't really make for the greatest of days. I was able to get a few things done, but it's really hard trying to type while wearing woolen gloves. The gloves definitely slow you down. 

But I've had worse days of chemo, so I guess this goes down as one of the good days. 

Amazing what an impact cancer can have on what qualifies as a "good day."

Celebrity Impersonations

It's probably fairly common for people to associate one another with various celebrities and characters they see in the movies and TV. "Hey, that guy looks (vaguely) like William Shatner." "Look at her. She sort of looks like Tina Fey." Celebrity has become our common reference point. 

At least that's been my experience. In recent years, I was frequently accused of apparently conducting an impersonation of the main character from the TV show House, played by Hugh Laurie. And while some might think that the association was a result of our shared surly and misanthropic personalities, the fact that I had complete strangers calling me Dr. House tells me it had more to do with three shared common features: unusual height, sprouty hair, and a seven day beard. I can sort of see it:

But that was then and this is now. At this point, I'm pretty sure few people are going to be confusing me with Hugh Laurie any time soon. If I gained a few pounds and was facing someone who misplaced their glasses I might have a slight chance of passing as a poor Bruce Willis impersonator, but my suspicion is that these days Powder or Humpty Dumpty are likelier to be identified as my doppelgangers:

Ah well, I'm far from the only one that looks like an egg these days. Around Seattle, it's a pretty common choice. 

Plus, I'll be saving a lot of money on gel. 

Wednesday, September 24, 2014

The Cycle 5 Chemotherapy Liveblog

Here we go again.

It's now 9:30 and I'm sitting in my chair waiting for the drugs to be delivered. BiL4 is a repeat chemo companion, as Sib4 came down with a cold last night so had to send him as a proxy. Meeting with the oncologist was interesting, to say the least. After the enthusiastic email from my other oncologist telling me that the tumors were shrinking, today's oncologist was something of a wet blanket. 

The things I learned:

1. The current treatment is not intended to cure me of cancer, but just to stabilize the cancer.
2. Basically, the plan is to keep me on chemo as long as a) the cancer responds, and b) I can manage the side effects. If the cancer stops responding, the chemo stops. If the side effects become too much, the chemo stops.
3. Once the cancer starts growing again and/or I've had enough of a break from the chemo to start tolerating it again, I go back on it.

In short, "cancer free" is not the goal they're pursuing. Thus, my Spring of Ignoring Anything and Everything That Even Remotely Relates to Healthcare may not actually happen as it appears worrying about cancer may now be a permanent condition. The best I may be able to hope for is a few weeks's vacation from cancer in between long bouts of chemo cycles. 

Clearly, message consistency is not a strong suit of the oncology group. Whatever. At least I got a week's worth of optimism out of the deal. 

Anyway, on with the live blogging...

9:46 am
All hooked up and waiting for the chemo drugs to be delivered. This time we're on a time table. BiL4 parked in the building and the parking rates jump from $5 to $12 after five hours. We need to either be out the door by 1:30, or BiL4 needs to move his car to restart the clock. I'm hoping for the former. 

10:15 am
Still waiting...

10:42 am
The Avastin is now flowing, and has been for ten minutes or so. (I forgot to do the update when it came. Sorry.) This one doesn't have much immediate effect, so basically the boredom continues. 

11:00 am
Avastin is done, now we're on to the two chemo drugs. Two hours to go. Well, two hours and then the 5-FU push and home pump hook up. 

12:10 am
This time, the chemo's putting me under. Last time I checked it was 11:15, but now it's afternoon. Lost an hour to fatigue and a warmed blanket. 

12:54 am
Infusions are done. Now I just have to wait for my assigned nurse to get back from lunch and hook me up to the pump. She's due back in six minutes, and the hookup usually takes less than ten, so I'm nearly out of here. Then it's off to find lunch.

Don't expect much to happen from this point on so I'm calling this one done so I can shut down the computer and be ready to go as soon as the pump is hooked up.

Tuesday, September 23, 2014

Where Does the Time Go?

I did a Google search today and was surprised to be reminded that today is the first day of Autumn. That prompted me to think, and I realized that my cancer diagnosis came just a few weeks before the summer solstice. This mean my entire summer was consumed by cancer. It was the Summer of Cancer, which totally sucks.

Even worse, if the oncologist's projections are correct, autumn will be the Autumn of Cancer, possibly (and probably) followed by the Winter of Cancer, depending on what's involved in any post-chemo follow-ups.

Given this, I'm ready to start gearing up for the Spring of Ignoring Anything and Everything That Even Remotely Relates to Healthcare. Accordingly, my birthday present to myself was a book called The Best Place to Be Today, published by Lonely Planet. It's a catalog of 365 entries telling you the best place to be and the best thing to do on any given day of the year. 

For example, the recommendations for the first week of March are: 1, leopard spotting in the Yala National Park in Sri Lanka; 2, hiking the Mountains of the Moon in Uganda; 3, tubing down the Caves Branch River in Belize; 4, attending the Auckland Festival in New Zealand; 5, watching hawksbill turtles lay their eggs in Borneo; 6, throwing paint at Holi, the rainbow festival in India; and 7, kicking off the Iditarod race in Alaska.*

I will be very grumpy if I don't actually make it to one of these best places (or one of the eighty or so other options) on its designated day sometime in the coming spring. Three seasons dedicated to cancer is plenty; by spring I will be ready for something that's as far from cancer as a person can get. 

But in the meantime, tomorrow is Cycle 5. I'd much rather be in Borneo.

* Clearly, one has to choose which day of the month on which to maximize one's experience. I'm not sure you could even get from Sri Lanka to Uganda to Belize to New Zealand to Borneo to India to Alaska on a day by day basis, even if you thought for some insane reason that it might be a good idea to try.  

Friday, September 19, 2014

Drinks All Around

It appears I can finally call Cycle 4 complete. At the very least, I was finally able to have a drink with ice. Granted, I wasn't able to actually touch the glass, but at least I could drink the iced tea it contained. 

Small victories. 

Tuesday, September 16, 2014

My Blog, My Soapbox -- Political Interlude #4

For a significant portion of my career,  my job was to negotiate clinical trial agreements. I worked for an organization that provided health care, thus had access to patients, and so companies would contract with my employer to enroll its patients in various studies to determine the effectiveness of new drugs, treatments and so on. The office I worked for was responsible for negotiating those contracts.

While I'm no doctor, you did have to at least have a sense of what was planned for the study in order to negotiate the contract terms. It was always interesting to see what folks were studying: new drugs to treat new diseases; new combinations of drugs to try to improve current standards of care; new devices to make surgeries easier. Lots of cool stuff. 

Occasionally, though, we'd see the odd marketing study. Tests to find out if capsules or tablets were preferred by patients, or if the flavor of a medication change the willingness of patients to take it. At the time, these seemed like weird studies for the organization and its doctors to spend their energies on. Who the hell cares what flavor a medication comes in as long as the medication comes?

I'll admit it. I was wrong. Having now experienced what I've come to believe is the worst modern medicine has to deliver, I have to say I'd be far more willing to participate in a marketing study focused on improving the experience of the current standard of care than I would some effectiveness study to modify the standard of care. I care less now whether I'm taking poison A or poison B, than I do having whatever poison I'm taking not actually taste like poison -- or cause unrelated systems in my body react to it like poison.

In that spirit, I offer up a few suggested studies that I think would be a lovely investment of some intellectual power even if they aren't about finding new cures or treatments:

1. If Hillshire Farms (among way too many others) can take the scrapings from the floor of a slaughter house, mix it with chemicals, and turn it into a food that folks (myself included) will actually choose to eat, someone ought to be able to make a contrast agent that doesn't taste like toxic waste.

2. Speaking of taste, could we not figure out the dead Tin Man taste thing? It would be lovely for "tastes like cancer" be a meaningless phrase, rather than something that gets all the cancer patients nodding (and cringing) in unison.

3. Someone needs to figure out the ice thing. There has got to be something that could be added to, or removed from, the chemotherapy cocktail that would allow the person undergoing cancer treatment to enjoy a nice iced tea or lemonade while they're being treated.

4. Ditto on the neuropathy. There should be a better response to that than "wear gloves." 

I'm sure others undergoing chemo could identify lots of other areas of the experience that could be improved.

And I'd like to point out that while it looks increasingly likely I'm going to be lucky enough to avoid this particular outcome, for the folks whose last days are going to be spent undergoing cancer treatments, it would be lovely if that experience didn't have to be such a hellish ordeal. People should die enjoying a lemonade on their patio while they watch the setting sun (for example), not being beat to hell by the side effects of chemotherapy.

A quick Google search tells me the National Cancer Institute alone spends $4.9 billion a year on research. Maybe a few of those dollars, rather than being directed at the so far not terribly successful effort to cure cancer, could be productively directed to making the current menu of treatment options a little more palatable. 

Good(?) News Travels Fast

So based on my experience so far, I totally expected to have to wait until next week's oncology appointment to get the results of my scan. But apparently oncologists are far more eager to share good news (and can you blame them?) than bad, as towards the end of the day I got a notice that a message had been uploaded to my medical record. 

Didn't figure it could be anything other than my scan results, and it wasn't.  My oncologist gave me the rundown on the results which were as follows:

1. No new tumors in my liver, and the tumors that were there were smaller than they were in the prior scans.

2. The weird zone in my liver that might be cancer or might be fluid was unchanged.

3. The lymph nodes that had Oncologist #2 concerned appeared to be back to normal.

4. The spots in my lung that I wasn't supposed to be concerned about were now gone (which makes me wonder if I shouldn't have been concerned about them).

In short, all good news. 

Sort of.

When I emailed my siblings the details on the results, I got what would probably be the expected responses: "Amazing!" "Wow!" Of course, my response wasn't amazing or wow, it was "Crap, now I've got to go through eight more cycles of chemo." 

I suppose I shouldn't be too surprised that people frequently think I have a bad attitude.

A Few More Words on Contrast Agents

They suck.

So it turns out that I did have to both drink a liter of contrast agent, as well as having it pumped in intravenously. It turns out that the barium "milkshake" (we'll come back to that in a moment) they have you drink lights up your gastrointestinal system, while the iodine agent they give you intravenously lights up your vascular system. And since in my case they wanted to examine both systems, I got both agents. Lucky me.

I've written previously about the intravenous agent, so I won't bother going through that again, but the oral agent deserves a few comments.

When you arrive at the check in desk they check your records and tell you that you need to drink a barium milkshake -- well, two actually -- before they can scan you. You have three options: banana, vanilla, and berry. Trust me when I say that those are more marketing descriptions than they are flavors. I started with berry and then transitioned to vanilla. In both cases, to my mind the more accurate flavor description would be toxic waste. 

So they give you this stuff in a canister that must hold half a liter or so, stick a straw in it, and send you to the chairs to read a magazine and sip. The texture is slightly thicker than one of the powdered diet shakes or protein drinks you can buy, but far from what I'd consider "milkshake" (which may be a good thing). And they refrigerated it, which had me slightly terrified, but did serve to force me to drink it very, very slowly. (And very nicely, they wrap the canister in a wash cloth so you don't have to touch it with neuropathetic fingers.)

And sure, at the first sip you might think, "Hmm, that vaguely reminds me of a berry/vanilla candle," but by the second or third sip, you're thinking, "Nope, this is toxic waste."

And after a couple of hours, your gastrointestinal system will agree, and begin attacking you with weird cramps and stabbing pains. Fun!

Very definitely not a fan of the barium milkshake. But I suppose it could've been worse; could've been a barium enema.

Monday, September 15, 2014

Tomorrow, We Scan

Tomorrow morning will be my third CT scan since my adventure with cancer began. As mentioned previously, the point of this scan is to see if the chemo is working and thus to determine whether I continue through (God help me) eight more cycles of chemo or call it quits on the chemo and... do whatever.

The interesting thing about this scan, though, is that they keep talking about my needing to drink the contrast agent. (Oh goodie, a new assault on my digestive system.) Oddly, with both of my prior scans the contrast agent was administered intravenously, with lots of drama about how it would likely make me feel like cold water was rushing down my back. So I'm not sure where the drinking thing came from. Adding to the weirdness, my last chemo nurse scheduled me to drop by the oncology clinic on the way to radiology as she's under the impression that the contrast agent will be administered through my chest port, and only the hem/onc folks are authorized to insert the necessary line. So how the contrast agent will actually be administered is something of a mystery, at least to me. 

It's always fun to be surprised by your medical providers, especially when you're dealing with something as inherently surprising as cancer ("Hey, look where it's turned up now"). 

And, of course, while the oncology docs will have the results on Thursday, I won't get them until my next oncology appointment for Cycle 5. 

Ah well. Unless the results are such that not only is the chemo not working but I only have a week to live (which is highly unlikely given what the tumor markers were doing last week), a week to get the results probably doesn't matter a whole lot.*

* Isn't that actually a fairly well-known joke? Doctor tells the patient, "I've got bad news and worse news. The bad news is you've only got a week to live. The worse news is that the test results came in a week ago." Or something like that. 

Cycle 4, Day 6 Summary

Those of you who are reading the blog closely -- and if that's you, shoot me an email and I'll try to direct you to some far more entertaining reading -- may notice that this is the first time I've had a Day 6 summary on a chemo cycle. This is because the side effects were basically gone by Day 6 in each of the previous cycles.

But while Cycle 4 has been less intense than any of the previous cycles (with the possible exception of the terrible shock to my fingertips that occurred when I stupidly picked up a glass of ice water at lunch to move it out of my way), the side effects have lasted significantly longer than with the previous cycles. 

If prior patterns held, by today I would've expected to be past the fatigue, past the nausea and gastro-intestinal distress, past the jaw pain and rapidly accelerating toward a return to tolerating iced beverages. This time, not so much.

Instead, I'm still exhausted, still feel like crap, still have a taste in my mouth like the Tin Man crawled in there to die, and wouldn't touch a drink with ice in it if you paid me. 

After six days, I am so ready for Cycle 4 to be done -- and starting to worry that as the cycles pile up I may reach the point where I don't actually recover before the next round starts. What fun that would be. 

Saturday, September 13, 2014

Cycle 4, Day 4 Summary

All things considered, Cycle 4 has turned out to be an improvement over Cycle 3. Granted, it was noon before I got out of bed (after going to sleep at around 10:00 the night before), but once I made it to vertical I was actually able to take a shower and leave the house. So that was good.

The bad part of Cycle 4, though, has been the whole mouth thing. I've already gone on at length about the whole weird choking feeling that ice causes, as well as the joint pain that starts up in my jaw whenever I eat or drink. Onto those already choice side effects, Cycle 4 has added an unrelenting mouth feel that I can only liken to what I imagine it would feel like if the Tin Man climbed into your mouth to die. This started with the infusion, but it's only gotten worse as the days have gone on. I keep waiting for the sensation to diminish, but it's been doing the opposite. What's more, the things you think might cover the taste -- like, say, coffee -- only make it worse. 

I might mention here that my average coffee intake is about four cups a day.  

So I would be extraordinarily grateful to the universe if tomorrow could bring a reduction to the mouth-related chemo side effects. I should probably just be happy that chemo-generated mouth sores haven't started yet,* but nah, I really want the Tin Man to go find some place else to die. 

 Warning: this is not something you want to Google.

Friday, September 12, 2014

Cycle 4, Day 3 Summary

Tired and crappy feeling all day? Check

Painful neuropathy? Check

Gastro-intestinal distress? Check

Weird jaw pain when I eat? Check

But the key feature of Cycle 4, Day 3? A horrible metallic taste in my mouth that wont't go away. A friend/co-worker suggested I buy a bag of hard candy to suck on throughout the day, and that did in fact help. Of course it also led to the subsequent problem that it now feels like I've worn a hole through the roof of my mouth. Oops. And then there's the question of what does it mean when the bag of sugar free Jolly Ranchers I bought includes the warning that this is "not a low calorie food," as well as nutritional information letting me know that four of the little suckers contain fifteen grams of "sugar alcohols." This may or may not have something to do with the fact that my blood sugars are way higher than they ought to be and won't come down. 

But I'm too tired to care about it all that much, and it doesn't much matter what your mouth tastes like when you're sleeping. 

And a moment of silence for Richard Kiel, who passed away two days ago but who's picture as Jaws was pretty much the only reasonable choice for this post. 

Thursday, September 11, 2014

Cycle 4, Day 2 Summary

Cycle 4, Day 2 had a lot in common with Cycle 3, Day 2. This is to say, I generally felt lousy and tired, and the neuropathy in my fingers was again pretty bad, especially in the morning (and when I forgot I was holding on to a cold container of salad dressing). 

But I was able to make it through a full day of work, more or less ignore the stupid infusion pump that's strapped to me, and avoid any of the gastro-intestinal troubles commonly associated with chemo.

I guess I can call that a success. 

Milestones That Shouldn't Be Milestones

It's my birthday this month, and I'm annoyed. This was supposed to be one of those birthdays that everyone can just ignore, but now it's a bloody milestone. 

When you're a kid, every birthday's a milestone. Yay!, you're one; you made it through a year. Yay!, you're two; now you're terrible. Yay!, you're three; now you're not terrible. You're ten -- double digits. You're sixteen; now you can drive. You're eighteen; you can vote. You're twenty-one; you can buy your own alcohol. Every year's a milestone of some sort.

Then there's the other end of the spectrum, when birthdays become milestones because everyone's just amazed that you reached them. Yay!, Grandma made it to eighty (anyone want to lay odds on whether or not she makes eighty-one?).

But for the forty-one years in between -- let's call it twenty-one to sixty-two -- birthdays are not supposed to be milestones. There's no significant difference between twenty-nine and thirty, forty-three and forty-four, fifty-seven and fifty-eight or whatever. It's all just life and it slogs by and for the most part your birthday is just another day. Sure, you can throw a party and pretend it's meaningful, but (trust me on this) everyone's basically just humoring you. 

But then you get cancer or some other terrible disease and suddenly that birthday that's supposed to be just another day is now a freakin' milestone. You're now Grandma. Yay!, you made it to forty (anyone want to lay odds on whether or not they make forty-one?).

I liked it better when my birthday was just another day. I wasn't really ready to go back to my birthday being a milestone. But yay!, I made it to forty-seven,* here's hoping I can make it to forty-eight...

* Dear Russian Mobsters, I realize that I've just narrowed my birth date down to a possible thirty days. This, plus various other details previously included on this cancer blog or otherwise available as a result of two-plus decades of Usenet and Internet usage have probably made me a fairly easy target for identity theft. But if I might request, just please don't. I have enough going on in my life right now. I really don't need to have to hassle with cancelling my credit card, reviewing my credit reports, and arguing with bankers. I thank you in advance for your consideration.

Wednesday, September 10, 2014

Cycle 4, Day 1 Summary

A quick rundown on Cycle 4, Day 1, post-infusion.

I'm exhausted. The jaw pain is back with a vengeance. Tylenol doesn't have much effect on my headache. Not only is ice a problem, even marginally cool drinks cause my throat to seize up. The neuropathy hasn't worsened, but it hasn't gone away either. My digestive system is extremely unhappy, and the infusion pump still annoys me. But at least my nose is the right temperature.

And speaking of the pump, apparently I've been far too casual about removing the lines and the pump on Fridays. During today's infusion, one of my lines caught and I almost pulled the line from the port. When I told the nurse about this, she mentioned that another patient had actually managed to pull their line. From that point on, the patient was known as "Orange Alert" since exposing the chemo to the environment turns the place into a hazardous waste site and brings out the guys in the orange haz-mat suits. 

I guess I should take the process of pulling my line a little more seriously. It's a closed system and all, and once you push saline and heparin through the lines there shouldn't be any way for the chemo to be exposed. But maybe some latex gloves might be in order. 

The Cycle 4 Chemotherapy Liveblog

So BiL4 made it through the traffic to Seattle, we've had breakfast at the local IHOP (I was getting tired of VPC), and now we're at Group Health for Cycle 4. The line's back in*, blood's been drawn, and we're waiting for the visit with the oncologist. (Today I'll be speaking with my fourth oncologist since being diagnosed. I'm hoping to collect the full set.)

8:50 am
Waiting, reading emails from work -- Hi work! -- and discussing the pros and cons of various phone models with BiL4, who's also trying to stay connected with his work.

9:21 am
Checked back in and now waiting to see the oncologist. I gained my six pounds back over the past two weeks, and am back to 224. Weird. 

10:18 am
Well, that was the longest wait to see the doctor yet. I think it was about forty minutes between the time the nurse left and the oncologist came in. But the doc eventually showed, and cleared me to proceed. He also told me that my tumor markers are down so the expectation for next week's can is positive. Yay me. I also learned than I have exceptionally good blood pressure. Go figure. I'm not a complete disaster health-wise, after all. 

In any case, now we wait for the chemo drugs to be delivered. (If "chemotherapy" isn't Greek or Latin for "interminable waiting" it should be.)

10:48 am
Still waiting for the drugs, but am being entertained by jokes a colleague at work is emailing me -- best so far: How many Germans does it take to change a light bulb? One, because Germans are very efficient but not very funny -- and some web surfing. The surfing led to an article about Will It Waffle?, a cookbook dedicated to recipes for putting unexpected foods into a waffle iron. As soon as I get my copy from the library, I'll definitely be trying the waffled spaghetti and meatballs. 

11:30 am
The drugs have finally arrived, and they've started the Avastin. While she was hooking me up, the nurse, BiL4 and I had an interesting conversation about PPE (personal protection equipment). The nurse was explaining that she wasn't gowning for the Avastin, but would be with the changeover, as Avastin wasn't chemo. I noted that, interestingly, none of my prior nurses had gowned or masked at all. As from wearing latex gloves, they skipped the PPE entirely. Turns out it's a fertility thing. Today's nurse is young enough to have parenthood ahead of her while my prior nurses were past their baby days, so she's more concerned about the potential risks associated with handling the chemo drugs. 

But she then mentioned that GHC was changing the rules and all nurses would soon be required to use gowns and masks when administering chemo. Apparently, this was not a popular policy change, but with what I know about the healthcare industry, I'm actually surprised this was left to personal discretion. 

And in the time it's taken me to write this, the drug-induced headache has begun. Sigh...

11:45 am to 12:45 pm
Spent an hour dealing with the GHC network, which decided to evict me. Tried turning the network connection on and off. Restarted the computer. Tried IE in place of Chrome (which goes to show how desperate I was). But no dice. GHC requires confirmation that you agree to their network policies before it'll connect you to the Internet and I couldn't figure out how to get it to throw up the agreement page so I could reconfirm my agreement. 

Frankly, it was like being at work, but with the added feature of a chemo-induced headache. 

And eventually, also like being at work, after an hour of screwing with it I shut down my computer and turned to other things.

1:15 pm
Opened my laptop to do some work and found that the network is back. Whatever. 

We're now halfway through the chemo infusion, with another two hours (give or take) to go. Decided to take a gamble and send my directionally-challenged BiL to Dick's for burgers and fries. It's eight blocks directly west, but there's the GHC complex, a large city park, and the intersection of Seattle's conflicting street grids** standing between here and there. I fear the burger may not be the freshest in the world when it arrives. (But thanks!, B., for going after them. I'll certainly take a lukewarm burger over starving any day.)

Another good joke from the intervening hours:
Want to hear a word I just made up? "Plagiarism"

1:37 pm
A quick symptom update. The headache has strengthened with a vengeance, so I've just ordered Tylenol. (My RN friends are going to tell me I was an idiot for not asking for at the start of the session. It's a fair point.) The weird metallic taste in my mouth has started, which means the week without ice has officially started. There's some increased stiffness to my fingers, which means this will likely be another week of neuropathy, though no pain as of yet (of course I'm not holding anything cold).

Elapsed time for the burger run so far: 27 minutes. 

1:50 pm
The burgers have arrived -- elapsed time: 35 minutes -- and they were delicious. I'm not sure a professional delivery service would've done much better. Thanks again, BiL4!

2:12 pm
The chemo infusions are done. Now it's just waiting for the pump to arrive, so I can be hooked up for the 48 hour 5-FU. And since that process always runs fast once it starts, I'm going to call this Cycle 4 liveblog over (unless, of course, something goes sideways and we're still here forty-five minutes form now). 

* You'd think that after almost thirty years of taking multiple shots a day, I'd be past the needle thing. You'd be wrong. I hate (hate, hate) when they put in IVs, draw blood, and connect the line to my chest port. 

** The story the Seattle Underground Tour tells is that while one city father started laying out streets at the north end of town, another started at the south. One elected to organize his streets according to the compass directions, while the other elected to lay them out parallel or perpendicular to Puget Sound which does not run explicitly north-south. Eventually, the two grids came to intersect and as a result our city maps have lots of weird triangular blocks. 

Tuesday, September 9, 2014

Gearing Up for Cycle 4

Tomorrow is Cycle 4. 

Sib4's husband (hereafter, BiL4) drew the short straw and so will be tomorrow's chemo companion. 

The plan for tonight: Lay on the couch eating RDT and wishing it was any other week.*

* But only after cleaning the kitchen to get rid of the week's worth of dirty dishes and the corresponding stench, reviewing the three contracts I had to bring home from work because I ran out of time to deal with them, and remoting into my computer at work so I can turn on the out of office reply on my email which I forgot to do before I left. 

Dread, Part 2

And then there's the scan that will follow Cycle 4. Honestly, I can't say I'm looking forward to that either. 

Consider the options: either a) the scan shows the chemo isn't working, in which case my life expectancy will be measured in months, or b) the scan shows the chemo is working, in which case I'll be looking at eight more cycles of chemo. As the oncologists have explained it, those are pretty much the only alternatives. Fair to say that neither sounds particularly wonderful? We certainly seem to be talking "least worst" here, and, frankly, I'm not always sure which is which. 

Death, while inevitable and something of a mystery, is sort of extreme, which certainly suggests "a" to be the worst of the two options, but I'd be lying if I didn't admit that there are days, chemo Saturdays in particular, when "b" seems worse (especially when they say that the added life expectancy is, on average, only two years). 

It will be what it will be, but I'm not really looking forward to finding out what the scan has to say.

Dread, Part 1

Apparently, the cancer biz has a concept called "anticipatory nausea." The patient, gearing up for their next chemo infusion, starts to feel nauseous before the first of the drugs are actually administered. Good times!

Happily, I have yet to experience anticipatory nausea, but I am starting to feel what I'm calling "infusion dread." Infusion dread is sort of like the Sunday night blues, only it's a lot worse and it lasts a lot longer. In my case, I've reached the point where the infusion dread starts the Sunday before my next infusion. By Sunday, I'm over the effects of the prior cycle -- able to again drink iced beverages -- but the coming cycle is on the radar (i.e., the week's calendar view in Outlook). So even though there were three full days before Cycle 4 starts, I spent all of this past Sunday dreading Wednesday's infusion. 

Admittedly, my experience of chemo has been far from the worst reaction in the world, but I've still reached the point where I absolutely detest the experience. I cannot overstate how much I hate chemo. Short of dying, I would do most anything to avoid undergoing anymore infusions. But since the only option is dying, it's off to the infusions I'll go. 

But I don't have to like it. And I will spend Sundays... and Mondays... and Tuesdays... dreading it. 

Air Bubble? Or Cancer?

I mentioned before the problem of wondering whether every new ache or pain is just a routine ache, or something connected to the cancer. I had a particularly egregious example of that today, in that today's new pain was in my side.

Now had I been running, I wouldn't have thought much about it, as the pain has a lot in common with the side pain I experienced in elementary school, junior high school and high school PE* when the teacher made us run laps. But I wasn't doing any running today. Rather, the pain appeared as I was walking (slowly) between buildings after sitting in a meeting at work for an hour. So I'm not sure I can blame this one on exercise. 

More concerning, the pain was located pretty much where the Google images I've found of the human torso suggest my liver ought to be. 

Happily, the pain went away; then unhappily, it came back. And then it went away again, and then it came back, and it's cycled that way a number of times throughout the day. I must admit, it's sort of starting to freak me out. 

If it's still there on Wednesday, I'll be asking the oncologist about it. 

* PE was never my subject. 

Monday, September 8, 2014

An Ode to P. and the RDT

A week or so ago my chemo mentor, P., and I were talking about the food cravings prompted by chemo. In her case, it was lemon meringue pie; it my case, it's Entenmann's Raspberry Danish Twist (hereafter, the "RDT"). 

For those who haven't experienced the RDT, it is the Platonic ideal of processed food. It is nothing but fat and sugar, and while the nutritional information on the packaging makes it seem marginally tolerable, the data is based on a serving size that no normal human could possibly accept. Eight servings per package? Not a chance. At best it's three or four. 

The RDT is absolutely terrible for you, and absolutely fabulous, especially if you increase it's nutritional value by heating it up in the microwave and then melting butter all over it. 

Nirvana on a plate. 

But sadly, it's been years since I've had one -- at least until today. Though I've been searching, I haven't been able to find a local grocery store that sells the RDT. However, this morning at work P. stopped by and dropped off three RDT's she bought on Amazon. It never even occurred to me to try Amazon. 

Thanks P.! You're amazing!

(And no, I'm not telling how much of the first one I ate tonight. But every bite was delicious.)

I Found My Hair

I think I've learned the answer to my earlier question of where does the hair go when it falls out of your head as a result of chemotherapy. 

It lands on your desk at work. Or at least it does in my case. My cubicle work station is starting to look like a barber shop. And after trimming my beard this morning, I realized that I'm starting to look like I've got mange. But when it occurred to me that the alternative was to buzz my head and shave my face, I decided that I could live with mange as a stylistic choice, at least for a little while longer. 

And no, that puppy doesn't have mange, but after doing some image searches on Google, I decided that no one needs to see examples of mange. The puppy's much cheerier. 

This May Not Have Been the Wisest Choice

At my last oncology appointment, the doctor told me that I needed to get more exercise,* especially in my "major muscle groups." He was concerned that the chemo was going to make me increasingly sick, increasingly immobile, and he wanted to ensure that, to the largest extent possible, I move when I can and lose fat rather than muscle. (I couldn't bear to explain to him that I'm pretty much all fat.)

In any case, with his recommendation in mind, and faced with a Saturday full of bright sunshine and temperatures in the 80s, I decided to go hiking -- for the first time in four years.** Based on my vague recollections of past hikes, and the reviews on the Washington Trails Association website, I decided I would hike to the top of Mt. Pilchuck. 

In retrospect, perhaps not the best choice. 

Oddly enough, when I offered Sib4's family the chance to accompany me only one person -- my niece -- elected to come along. (Perhaps that should've been a signal.) 

It turned out to be an educational trip up the mountain. Here's what I learned:
  • My niece is a sweetheart. She's a senior in high school, and probably could have made it up the mountain and back down again in the time it took me to get to the top, but every time I stopped she stopped, and when I complained that the route was harder than I expected she confirmed its difficulty. In short, she did her best to not make me feel like an out of shape old man (but while i was hyperventilating, she was just patiently waiting, so I'm pretty sure she was faking it). 
  • When selecting a trail to hike for the first time in four years, it's probably not the best idea to choose a trail with the word "Mount" in its name. 
  • The reviewers on the WTA website are clearly not normal people. (The fact that the first review I read started off, "We got to the trail at 8:00...," should have tipped me off.) Estimating the difficulty of the hike based on the reviews of these hiking zealots was sort of like estimating how fast I could run a mile based on the average time of the kids on the local cross country team.
  • If you want a smooth path to hike, it's probably not a good idea to choose a trail the web page for which features a picture that shows nothing but rocks (see above).
  • A Type 1 diabetic who's taking Avastin probably shouldn't be engaging in activities that are likely to result in blisters. But at least it's a small blister.***
  • The Roadster is not built for gravel roads, especially gravel roads that feature numerous pot holes and weird trenches and which, on a sunny afternoon, are covered with randomly alternating sun and shade which makes it impossible to actually see the road ahead. 
But when push comes to shove, the most important thing is that we actually made it to the top. 

So thanks to my niece for keeping me company, doing her best not to make me feel like an old man, and pushing us all the way to the top. 

* As I get older, and experience more and more doctors as a result of more and more alarming diseases and unusual aches and pains, I'm starting to wonder if recommending more exercise is a condition of receiving one's MD. I can only imagine the orthopedists: "You've broken your arm. You should get more exercise." 

** This was cancer summer, before that was divorce summer, and before that was disassociating spouse summer, so the last time I was on a trail was probably 2011. 

*** And I was wearing hiking boots. We passed a number of folks hiking in flip-flops. I hate to think what trying that would do to my feet. 

Thursday, September 4, 2014

A Thought for the Day from History's Greatest Philosopher

Hollywood's Weird Relationship with Cancer

I didn't have much to say about my cancer in this non-infusion week until I sat down to pay bills, turned the TV on for some background noise and caught the last half hour of About Time. It's a very sweet movie, if totally mismarketed as a romantic comedy (see photo at right). Just my opinion, but it struck me that boy's primary relationship in the movie isn't girl, but Dad. And since it's been more than a year since the movie came out, I'm allowed to say here (ok, fine -- spoiler alert) that Dad, of course, winds up dying of cancer. 

This started me wondering about movies where cancer features prominently. The Internet Movie Database identifies 1,269 titles with a keyword of "cancer," and 56 that match "terminal cancer." 

Granted, the IMBD rankings are based on the “MOVIEmeter” (basically, popularity), but any guesses what tops the lists?

Here are the first five films that come up for the keyword “cancer”:

Guardians of the Galaxy -- Apparently nothing speaks to cancer more than a talking space raccoon with a machine gun.

The Fault in Our Stars -- Clearly a film about cancer, though not a film for me about cancer. But score one for Hollywood and the IMDB rankings.

Good Will Hunting -- Fair to say this one makes the list as a result of Robin Williams’s recent death, and it’s admittedly been awhile since I’ve seen it, but I’m not seeing the connection here. A modicum of motivational back story doesn’t really make cancer a key subject of a movie as far as I’m concerned.

God’s Not Dead -- Despite the presence of Kevin Sorbo, this has more in common with A Thief in the Night* than Hercules: The Legendary Journeys. In my opinion, this disqualifies it from further consideration (my blog, my rules).

Fight Club –- Yes, there’s a cancer survivors’ group in the film, but since none of the characters (as I recall) actually have cancer, I’m discounting this one too.  

Let’s see if we do any better with “terminal cancer”:

3 Days to Kill -- Non-specific cancer as motivation for killing lots of Europeans. Uh, no.**  

White House Down -- Non-specific cancer as motivation for starting World War III. Again, no.

Big Fish -- Yeah, a character’s potential death from cancer figures in the film, but since the bulk of the film is basically flashbacks to that character’s life, s/he could be dying from food poisoning for all it matters. 

50/50 -- Finally, a film -- and a pretty great film -- about cancer. Funny, poignant, and actually somewhat educational about dealing with cancer. Score two for Hollywood.

Biutiful -- I’ll concede the point on this one as I haven’t seen the film, and don’t have time to research it. Score three for Hollywood.

So three out of ten movies for which cancer is considered a keyword are actually about cancer in any sort of meaningful way. For the rest, "cancer" is just an ostensibly powerful motivating force. Kill Europeans, because cancer. Motivate graduate students, because cancer. Save the galaxy, because cancer. It’s actually kind of stupid.***

I have cancer, and I can’t say I’m finding it powerfully motivating at all. And it certainly doesn’t make me want to kill any Europeans.

* If you’re younger than thirty or older than fifty, or weren’t raised evangelical, Google it. The 30-50 crowd who were raised evangelical have probably seen it -- and no doubt remember the guillotine.

** Spoiler alert: Especially since the non-specific cancer is miraculously cured.

*** Not to mention, at this point kind of boring. You’d think some Hollywood writer would at least peek into a medical dictionary and choose something novel like hemorrhagic fever to motivate their characters. 

Monday, September 1, 2014

Back to Human

So eighteen hours after rising from the grave getting off the couch -- which is to say, when I woke up this morning -- I was back to feeling human. I'll let those of you reading decide if it was the eighteen hours or the getting off the couch that made the difference (no doubt everyone will have an opinion), I'm just glad to have survived and moved past the most recent chemo weekend ("chemo Saturday" just isn't cutting it anymore).

Happily, while this Saturday was a rainy disaster in Seattle (and so terrible convertible weather), today was actually a lovely day. Thus, Sib2 and I decided to take the Roadster north to Bellingham to visit Sib1. 

Important life lesson: It's a good idea to call a relative to make sure they'll be home before making the three hour drive to visit them.* Which is not to say that Sib2 and I didn't call ahead. We just waited until we were five minutes from Sib1's house to make the attempt -- and then promptly threw a U-turn so we could drive the thirty miles south to Mt. Vernon, where Sib1 was shopping. 

But to return to the subject at hand, as with Cycle 2, by the end of the day Monday the worst of the post-infusion chemo effects are gone, with the exception of the massively negative reaction to iced beverages, and, the highlight of Cycle 3, the neuropathy in my fingers. Sad to say, but I'll be digging out the winter wear box** before going to bed tonight to find a pair of gloves I can start wearing when I need to drive when it's cloudy or need to pull something from the refrigerator, both of which were sources of significant pain this morning when I attempted them gloveless. 

With luck, the Cycle 2 pattern will continue and by Wednesday I'll be back to enjoying ice in my beverages and perhaps even be able to hold a cold glass without my fingertips feeling like I'm removing them with a blowtorch. 

One can dream. 

* Unless, of course, the primary goal is just to drive around in the sunshine and visiting the relative is a convenient excuse for doing so. 

** Not being much of winter sports enthusiast, my winter wear box is, in fact, a shoe box containing three pairs of gloves, two scarves, and a couple of watch caps. It'll take me about thirty seconds to find the right gloves. The bigger challenge is wrapping my brain around the fact that I need to be wearing gloves in September.