Tuesday, December 30, 2014

Almost Happy New Year!

Well, the West Coast (USA) leg of the GCW Tour is just about over. We've spent the last six days in San Diego and the vicinity, and I've done just about everything I came here to do -- and after ten minutes had been around long enough to remember why I don't still live in Southern California (hint: freeways and parking lots are supposed to be different things) -- so tomorrow we're back on the road heading North. 

I dare say it will be a faster trip heading home than it was coming down. I was originally thinking I'd take the long way home, but that will not be happening. 

In any case, since I likely won't be online tomorrow it seems as good a time as any to say Happy New Year.

So here's wishing everyone a good 2015. I'd like to say it's inconceivable that 2015 could be worse than 2014, but I saw the Princess Bride...


...so I'll just leave it at best wishes.

Big and Small

The other day I was having a coffee at a coffee shop in San Diego, sitting in the sun (yay!) at an outdoor table. During the twenty minutes or so I was there, I noticed two homeless people. 

The first was a gentlemen who came walking down the side walk with a cane. As he walked, he sang and banged his cane into most everything he came across, including the statue in front of the hotel next door. He even engaged in an argument with said statue, emphasizing his points by hitting it with the cane. People moved a significant distance away from this guy, who occupied a huge amount of psychic space. 

In contrast, the second guy I saw sat cross-legged on the sidewalk, head down looking at the ground and generally making himself seem as small as he possibly could.

I was struck by the contrast, and am sure that there was some meaningful lesson to be learned from it, but I'm not sure exactly what it is. 

So I'll just note it here as something of interest.

Back in the Saddle Again

Sorry to be quite for so long. I've been preoccupied...

Wednesday, December 24, 2014

Merry Christmas!

Assuming I don't die in the next eighty-nine minutes, I can again update my scorecard:

Birthdays since diagnosis:          1
Thanksgivings since diagnosis:   1
Christmases since diagnosis:      0 1

Merry Christmas to all who celebrate that particular flavor of winter holiday, and here's hoping Santa is good to you. Happy Thursday to everyone else. 

Tuesday, December 23, 2014

Getting Back to the Subject at Hand

Before this turns into a travel blog, I should provide a quick update on the state of my cancer, and the new pill-based chemotherapy.

In short, pills are good. 

It could be that I have to wait until the drug builds up, but so far the side effects from the pills have been minimal. There's been no sign yet of either hand-foot syndrome or mouth sores, either of which will likely lead me to opt out of the pills. I'm still dealing with leftover neuropathy from the infusions -- at least I'm hoping it's leftover so there's a chance it might eventually go away -- but aside from that I'm feeling a lot better now than I did while receiving the infusions. I'm actually feeling like I'm almost back to human.

So I'm liking the pills. 

Now I just have to a) find an oncologist who can pick-up where Group Health left off, and b) wait for the next round of scans to see if the pills are actually working.

But that can wait for this leg of the GCW Tour to be over. 

Everyone Loves a Parade

South of San Francisco Highway 1 becomes a parade. It also stops being a candidate for one of the world's best roads and turns into a mishmash of six lane freeway followed by suburban stop and go hell followed by straight, flat, two lane boredom and back around again. 

We'll see if Monterey to Los Angeles improves any.

But there is at least one thing that makes this section of Highway 1 worthwhile: Santa Cruz. Santa Cruz is worth whatever traffic nightmares it takes to get there. 

Monday, December 22, 2014

The Universe Throws Me A Bone

If you're the type of person who likes to drive the kind of roads that get named in the various "Best Roads of..." books, you've probably figured out by now that the problem with such roads is that they're named in the various "Best Roads of..." books. Since everyone else is reading that same books you are, everyone else wants to drive that same piece of asphalt you do.

As a result, the "best roads" generally produce less the ultimate driving experience (BMW or no) than they do the ultimate parade experience. Scores of cars wind up lining up behind an agonizingly slow RV whose driver either a) doesn't want to acknowledge that they're the limiting factor on everyone else's speed, b) can't figure out how to safely get the RV out of the way, and/or c) doesn't give a damn that they're causing everyone else's blood pressure to go through the roof. 

As a perennial presence on most best roads lists, Highway 1 can easily become a parade route. But not today. Today the universe augmented the Roadster with nearly perfect convertible weather and one of the best roads in America almost completely devoid of cars. We were able to drive for an hour or more without passing or being passed by another car going the same direction; and on those rare occasions when we came upon another car, each and every time they pulled out of the way to let us pass. 

The only RV we saw was parked in a pullout where the occupants were enjoying a cup of coffee.

Short of a closed road, it was as good a driving experience as one could hope for. It doesn't matter what else happens on this leg of the GCW Tour, today's drive totally justified the trip. 




Sunday, December 21, 2014

Life Lessons from the First Days of the First Leg of the Goodbye Cruel World Tour

Apparently, it's never too late to learn something new. Two days on the road for the first leg of the GCW tour have taught me few things. 

So here's the rundown on what I've learned so far, most of which likely falls under the category of "common sense."






Lesson #1: 
Do not return to places where you once had good times with significant others that no longer find you significant. All things considered, it's rather depressing. 


Cape Disappointment State Park, 
a great place to camp with your significant other.


Lesson #2: 
Ultimately, life comes down to choices and priorities. I don't know how much time remains for me -- but , really, who actually does? -- but cancer does force you to recognize that the time's not infinite, so you've got to make choices about where and how you'll spend it. Every choice you make precludes some other option.


Cannon Beach, 
a very pretty spot which I will likely not see again.


Lesson #3: 
Winter is not the season for coastal road trips in the Pacific Northwest, unless you like fog.


The Oregon Coast, 
and one of the clearer spots we found.


Lesson #4: 
A little advance planning can sometimes save you a lot of hassles. 


Highway 101 between Newport and Coos Bay, 
approximately 50 miles south of the last east-west access road and 
about four miles north of the next east-west access road.
Unfortunately, we were headed south...


Lesson #5:
But surprises can be fun, too.


Highway 34 in Oregon from 101 to I-5,
a pretty road and very fun to drive
(hidden so you can discover it for yourself).

Wednesday, December 17, 2014

Well That Explains It


Happy -- Or, You Know, Perhaps Maybe Not -- Pills

It's official: no more chemo infusions. As of today, I'm on a pill form of chemo (with an infusion of Avastin for good measure). The plan is to get an infusion of Avastin then for the next fourteen days take three Xeloda pills in the morning and three in the evening, plus whatever anti-nausea medications may be required to offset the impact of the pills, then take a week off, and then start again. 

Around and around we go.


And for all this it appears I can expect... an extra three months of life. 

The oncologist today had to look up the paper that described the protocol I'm now on so he could calculate my dosages. While he was looking for dosing information, I was scrambling to read as much of the article summaries as I could understand. And if I read them correctly, the difference between people who stopped chemo and did nothing versus those that stopped chemo and started my new treatment protocol is that the people in the latter group lasted three additional months before their tumors started growing again.

Three months is good right? Maybe. It sort of depends on how bad the reaction to the pills is, I think. Three additional months of feeling good would be worth it; three months of feeling crappy, perhaps not so much.

In some ways, though, the real question is, "Plus three months compared to what?" What's the baseline survival post chemo? That's the into I was desperately searching for in the papers and the screens were clicking by, and it's the info I never really found. But the numbers flashing by reminded by of one of the points emphasized in Being Mortal: patients think in years, doctors in months. 

I was really starting to think I had a shot at seeing Star Wars: The Cash Cow Needs Milking, but after today that seems a long way off. 

Tuesday, December 16, 2014

Vacation Can't Come Soon Enough


That is all. 

Here's to the Staff of the Group Health Infusion Center

Tomorrow will be my last oncology visit with Group Health. After tomorrow's appointment I go on vacation for a bit, and then come back to immediately choose another cancer care center.

If all goes as planned, I'll likely get a short infusion of Avastin, and then get sent to the pharmacy to pick up the new pill-based chemo. So tomorrow's should be a fairly quick trip through the infusion center.

So before I forget, I want to acknowledge all the women -- and it was only women -- in the infusion center who took care of me over the past six months. There were a couple of different receptionists, and about half a dozen nurses, and a few others whose roles I'm not sure of. To a person, they were all incredibly professional, helpful and terribly good at their jobs. 

Most of my time was spent with the nurses, which could be entertaining as they all had very different styles of providing care. But while the approaches might have differed, the underlying commitment to providing the best care possible, and making the experience as easy as possible, was universal. 

Chemo sucks, and there's not much even the best nurse can do to change that fact, but they all did their very best to make it as tolerable as possible. And in their own ways, they were each as compassionate as one could hope people working in that kind of environment could be. 

So here's the nurses and the rest of the staff in the infusion center at the Group Health Medical Center on Capitol Hill, with thanks for all they did for me. 

Who Knew? Another Good Distraction From Cancer

Soul crushing anger. 

The kind of anger that can only by caused by someone who both knows you well enough to know where every button lies and cares so little for you they're more than willing to push every button to get what they want. 

The kind of anger that makes it impossible to think clearly, act clearly or do anything more than just stew in your own bile.


Even thoughts of cancer can't get through that sort of barrier. 

So in celebration of my anger, and the distraction it's provided from the cancer, I'm going to have a little party and post a music video. If I listen to it a few thousand times, maybe I'll calm down and can get back to dealing with something important -- like preparing for whatever the next phase of cancer treatment, which starts tomorrow, is going to bring. 



I'm Starting To Wonder If I Shouldn't Just Hand My Cancer Blog Over To Bill Watterston



Luck of the Draw

This past week I heard from a couple of blog readers letting me know about their own experiences with cancer. This made me think that it's time for some acknowledgement of the fact that while cancer sucks, in some ways I'm actually fairly lucky. To wit:

I'm not a kid. -- Cancer has been bad enough as an adult who understands what's happening and can make his own choices about what he's willing to undergo. I can't even begin to imagine what cancer would be like as a kid who may or may not understand what's happening and, more important, is entirely subject to the decisions other people are making about his or her care. 

I'm not the parent of a kid with cancer. -- As hard as it must be to be a kid with cancer, how hard must it be the parent of a such a kid. Trying to make decisions about what the right thing to do is, not wanting to outlive your child. Again, I can't imagine what parents in that situation must go through, but I'd bet most would happily trade for a few rounds of chemo for themselves.

I have a nice white collar job. -- I remember talking with one of the nurses administering my chemo about a patient she had who was undergoing a chemo protocol similar to mine while working as a roofer. This guy was taking his infusion pump up onto the roofs he was working on, getting chemo while laying out shingles. My guess is he probably didn't have time paid time off, either. Comparatively speaking, my ability to miss work when the chemo gets bad and not have that lead to unemployment makes things unbelievably easier for me than they would be for the folks who lack the kind of protections I have.

I've had my nice white collar job for six-plus years. -- One of my former co-workers had the unfortunate experience of discovering her cancer as a result of trying to spend out her dental coverage before changing jobs. After more than a decade with her current employer she decided to change jobs, and between quitting and starting went to a dentist who discovered a lump that turned out to be cancer. How hard must it be to start a new job as a cancer patient? No one knows you, no one knows what you can do, and you're stuck trying to establish yourself in this new environment while dealing with the fact that you have cancer. Add to that the fact that a lot of the job protections like FMLA and so forth don't attach until you've got a certain amount of tenure in the job, and you're talking a very tough row to hoe. As noted above, cancer's hard enough without having to worry about it's impact on your job.

My cancer can't be cured. -- Clearly, it's a bit of a double-edged sword, but the fact that stage IV colon cancer is considered "non-curable" means the treatment protocol is actually easier than many of the alternatives. If they're trying to cure you, the oncologists will push your body as far as they possibly can before backing off. It's sort of the cancer-equivalent of "we had to destroy the village to save it," Thankfully, I was able to avoid that. 


I live in Seattle. -- Living in a big city clearly gives you advantages as a cancer patient. I've seen people in the infusion center who are driving five or six hours to get to their appointments. How stressful and expensive must that be? In my case, I've got numerous cancer treatment centers all within walking distance of where I live. 

Frankly, it doesn't really matter how long I live. -- Yeah, yeah, there are people will miss me. But by any reasonable measure, whether I die in six weeks, six months, or six years isn't really going to matter much to the universe. I don't have small children that will be left without a father. I don't have a spouse depending on me for an income, care, or anything else that would cause me to fight to stay alive. And while my absence at work would likely me noticed, I've been around long enough to know that when push comes to shove in the working world we can all be replaced. 

So while it sucks to have cancer, there are lots of folks whose experience of cancer is a whole lot worse than mine. So consider this acknowledgement that things could be worse, and in a lot of ways I've got it easier than many folks in similar positions. 

To put it another way, not everyone with cancer has the chance for a GCW Tour. 

Saturday, December 13, 2014

Pins and Needles

Perhaps I should've stopped at eight cycles. Cycle 9 definitely made the neuropathy worse than usual, and this time it's not really going away. My feet are constantly on pins and needles -- especially my toes -- which is weird and annoying, and makes extended walking slightly problematic. 

My fingers on the other hand have this weird numbness that turns into pain when they touch cold surfaces. So while I can actually drink an iced beverage, I can't really pick up the glass. More important, after months of generous food donations my fridge is fairly full of various leftovers that need to go away before I head out for the first leg of the GCW Tour. 

It's really hard to clean out the fridge wearing gloves, but not wearing them is pretty much a non-starter.

I just hope the neuropathy goes away soon. Refrigerator magnets excepted, I'm not really much of a souvenir guy.The last thing I need is a souvenir from the chemotherapy. 

Wednesday, December 10, 2014

Kicking Off My Tour

Awhile back I posted about my intent to hit the road as soon as it became clear that my pet cancer had reached the point where my survival was questionable. I'm rethinking that timeline. More specifically, the hospice flyer I read while waiting for my last oncology appointment makes me think it's unlikely I'll be falling over dead standing atop Machu Picchu or staring at the Mona Lisa. Cancer doesn't come out of nowhere to kill you; first it incapacitates you. So if I wait 'til the end to get on the road, I may not actually make it out my front door. 

More important, I've realized there are too many places to see. If I save them all for the end I won't see them all.

So I'm kicking off my tour a bit early. A week from Saturday, actually. 

I'm calling it "John's Goodbye Cruel World Tour" (and, yes, I do believe there will be T-shirts). 

The first leg will be the West Coast of the (continental) United States. So if you live anywhere between Seattle and Tijuana, will be in or around your neighborhood between December 20 and January 3, and would like me to stop by to say hi, shoot me an email (j m streck "at" gmail -- lose all the spaces and format per usual conventions). And some of you, who have both emails and West Coast locations that I know about, may hear from me directly.

It is somewhat ironic to plan a farewell tour so you can see all the things you didn't have time to see previously, but then spend the first leg of it going to places you've been numerous times before. But a) I'm driving the Roadster which, provided it's not raining, is always a joyous experience, b) I'm planning to make up for it with the second leg of the tour, which I hope to be Vietnam, and c) Sib4 chose San Diego as a replacement for the twenty-somethingth repeat of family Christmas in Seattle, so I'm just hijacking a previously planned family holiday for my own purposes (sorry family!).

And for the record, I did some research. Apparently, Cher's farewell tour by most counts lasted for three years, but others argue continues to run (with the occasional break) since its start in 2002. So perhaps I'll luck out and be able to celebrate multiple anniversaries of my Goodbye Cruel World Tour. 

But regardless, the sooner I start the more places I can go.

I Think I Stumped the Internet

I have just spent a few minutes attempting to find the original usage of the phrase "goodbye cruel world." The Internet doesn't seem to know. 

Wikipedia tells me it's the name of albums by Elvis Costello & the Attractions (1984) as well as a best of album from band called Custard (12000). It's the name of songs by James Darren (1961), Pink Floyd (1979), and Shakespeare's Sister(1991), It's the name of a British Miniseries (1992) and a 1982 movie starring Dick Shawn. Wikipedia also informs me that it's "a cliched phrase used in literature and song usually referring to a statement before contemplating suicide." But no indication of who used it before it was a cliche,

Elsewhere, I find that the phrase has been used in animated entertainment by both Homer Simpson and Daffy Duck (a possible contender for first usage, maybe?), among others. It's the name of an episode of M*A*S*H. And in terms of quotations, a number of people seem to be impressed by its appearance in Hocus Pocus

But nowhere can I find anything that will tell me what the definitive first usage is. 

The hive mind has failed me. Ah well, life goes on.

Tuesday, December 9, 2014

My Last Chemo Infusion Roundup

If all goes as planned, last week's chemo cycle will be the last of my chemo infusions. Going forward, I'll be on pills. And at this point, it's hard to see any circumstance that would lead me to choose to go back on the chemo infusions. 

This is particularly true after this last cycle which has been pretty horrible. Despite the four week break, the side effects this time were as bad as they've ever been. The nueropathy was particularly bad. At this point my feet still hurt -- which is new -- and while my fingers are getting better faster, the pain was the worst it's been so far. 

Oddly, Thursday and Friday weren't all that bad. For the first time in more than a month, I was able to work the two days after chemo. It wasn't until Saturday that I really started feel terrible, and Sunday was worse.

Overall, things are starting to improve, though I'm still drinking beverages without ice. It feels like things are starting to improve -- yesterday being better than today -- but given how long the effects have lasted this time, I'm glad to know that this will be my last round with IV chemo. 

I don't care how many months or years it buys you, the trade offs from chemo -- well, IV chemo at least; we'll see how the pills go -- just aren't worth it. 

Monday, December 8, 2014

A Multiple Choice Exam

So for most of today I've had a headache, fatigue, weird sinus stuff, stomach upset, and zero desire to eat. Is it:

A. Physiological side effects of the last round of chemotherapy?
B. Pyschosomatic side effects of the last round of chemotherapy?
C. Some seasonal bug I acquired by stupidly going to Target yesterday to buy toilet tissue, a blender, and the new Call of Duty game?
D. Some combination of the above?

Yeah, your guess is as good as mine. All I can say is that I'm really tired of feeling lousy for no specific, time-limited reason. I do hope the side effects of the Xeloda are fewer and less intrusive than the fluorouracil it's replacing. If they're not, I won't be staying on the pills for long.

Contemporary cancer treatment: keeping you alive so you can feel lousier for longer. 

Personally, I'm growing tired of feeling lousy.

Thursday, December 4, 2014

An Open Letter to Oxaliplatin

Dear Oxaliplatin,

Today I realized our relationship is over. After six months of bi-weekly intimacies -- and how much more intimate can you get than the way you rushed through my chest port straight to my heart? -- you will soon just be a memory to me, and I will just be a statistic to you.

Like all relationships, ours had its ups and downs; and like many relationships, most of the ups came at the beginning and most of the ends appeared toward the end. I cannot deny that when I learned after Cycle 4 that you’d reduced the size of my tumors, my fondness for you grew. A shrinking tumor is a good tumor, and how can one not love the agent responsible for forcing their tumor to turn from evil to good?

But I’m sad to say that troubling signs had already begun, even while you were encouraging my tumors to behave. That thing you do to my mouth? That is not “sexy,” that is not “fun” -- it’s bloody annoying, and the fact that every time we got together it only got worse was probably the ultimate cause of our inevitable breakup. Frankly, I find this most recent round, and the way my lip now tingles and gets weird the minute it touches cold liquid, intolerable. I love ice, and I do not like drinking through a straw.

Similarly, I fear I may have misinterpreted the feelings you generated in my abdomen. Love is frequently described as a feeling of “butterflies in your stomach,” and for the past six months I’ve certainly been feeling something in my stomach. But after what I’ve seen, smelt and felt, I’ve determined that what’s in my stomach ain’t butterflies.

For these reasons, and all the scary things an ongoing relationship might cause, I've consulted with the experts and decided it’s time we go our separate ways.

I have no doubt that eventually some of those experts will try to persuade us to get back together. “You responded so well to Oxaliplatin,” they’ll tell me. “Oxaliplatin was so effective with your tumors.” All true, but also beside the point. There’s more to life than the size of your tumors -- at least qualitatively; quantitatively the size of your tumors may be pretty much dispositive -- and at risk of coming across as an alcoholic, the Happy Hour is a very important part of a happy life. Also crucial to a happy life is the ability to limit your abdomen feelings to one: hunger.

If we’re ever getting back together, Oxaliplatin, you’re going to have to figure out how to do your important work on the tumors without the annoying and life-diminishing (again, qualitatively) side effects. A life without iced beverages is just not something I’m interested in.

But regardless, I will always reflect fondly on your impact on my tumors.

I wish you all the best,

john

Wednesday, December 3, 2014

Family of Origin Interlude #3

Evidence would suggest that the males in my family suffer from a genetic disorder: the gene that causes someone to start a project is (overly) dominant, while the gene that causes them to complete a project once it's been started is basically non-existent. 

A couple of examples should easily illustrate the point.

Years ago my Mum asked Sib2 and I to install a fence around the perimeter of her property. So we bought all the posts, panels and concrete, rented a gas-powered post hole digger, and spent a weekend building Mum a fence -- mostly. We sunk and cemented all the posts, and nailed in all the panels. but we didn't go back to trim the posts to a consistent length above the panels. For years Sib2 listened to Mum complain that the posts were all sticking at random lengths above top of the fence, until he eventually went back to cut them all to length.

Then there was the kitchen in my first house. I had contractors come in and move some walls, rebuild the roof, run new power and so forth. They left me with an empty, drywalled box, and then I went in and installed the cabinets and appliances, laid tile, painted and installed trim -- well, most of the trim. I got the crown molding and window trim installed, but for some reason opted to punt on baseboards. For years the kitchen looked fabulous, as long as you didn't look at the bottom edge of the walls. I think it was about three years before I decided that I should probably install the baseboards in case I ever needed to sell the house.* 

Similar tales of 95% completed projects litter the ground of our family's history.

But while this problem can be managed when you've got untold years to wait for the impulse to complete the last 5% of a project to appear, when there's suddenly a far less generous clock on completion it becomes something of a problem.

For example, when I moved into my condo a year ago I painted the walls. Much of the trim, however, is still waiting for a refresh. What's worse, I've painted some of the trim so the unpainted sections are all the more obvious. And while I frankly don't really see it anymore, the last thing I want to do to whomever winds up managing my estate is leave them with a condo full of partially completed projects -- painting is far from the only half-completed thing I've started -- that all need to be completed before the condo can be lived in or sold. 

Clearly, I'm going to need to develop some new strategies for project completion. I think I'll start with my squares. 


* To be perfectly honest, I didn't install the very last piece of kitchen trim until the night before the house went on the market. 

Cycle 9, Day 1 Summary

Happily, the cancer vacation seems to have had an impact on my reaction to the chemo. With the last few cycles, I've been down for the count for nearly four days. Today, though, I've generally felt pretty good, and certainly nothing like the debilitating fatigue that came previously. 

That said, it's not been without it's impact. After nearly three weeks of cancer vacation, I've gotten used to drinking things stored in my refrigerator. Big mistake. I now have three-quarters full glasses of milk, eggnog and orange juice sitting on the shelf in the fridge. The neuropathy hit with a vengeance, and I'm again reduced to drinking warm beverages. Even just having something cold hit my lip starts it to tingle and go numb. I just wish I'd remember that before I stupidly try to drink something cold.

And then there's the chemo-induced gastrointestinal distress -- but again, some things are just not worth dwelling on.

We'll see if things change over the coming days, but so far this last cycle is shaping up as manageable. 

Happy Holidays!

I learned last year that holiday cards aren't really my thing. Making them amuses me, but I don't really have control of my address book such that I can find the twenty addresses necessary to make it a cost effective activity. I'm pretty sure I have more cards left over from last year than I actually sent.

But since everyone I'd send a card to is likely reading this blog, I thought I'd just post an image of what this year's card would've looked like here. 


Feel free to print out a hard copy if you like to hang them on your door or something.

The Cycle 9 Chemotherapy Liveblog, Take 2

Well let's try this again.

So I'm back in the infusion center for a second attempt at Cycle 9. Unfortunately, the four week vacation hasn't really made a difference in how I react to these cycles. The nurse hadn't even begun to draw blood for the required pre-chemo lab tests and I already felt lousy. 

How can saline make you feel lousy? It can't, but it does.

Ah well. The line's in and the blood's been drawn and now I'm just waiting for the (notoriously late) oncologist to get the results and let me know if we're good to go for another cycle, or if my test results will again send me home. And if that's the case, it'll be time to talk conversion to pills. Based on what the SCCA-guy said, going six or eight weeks without doing anything to the cancer is not a good choice.

But we'll see...

8:32 am
Checked in with the oncology clinic, waiting, and reading a reprint from a Ladies Home Journal article about hospice care. Only slightly terrifying...

8:39 am
Checked in. It seems the eggnog lattes are catching up with me. Back to 224 pounds. At least no one can accuse me of wasting away. Back to waiting, this time for the doc to arrive.

8:44 am
While we're waiting for the doc, I thought I'd re-post the new Star Wars trailer released this past weekend, since there's nothing like a new Star Wars movie to convince an American male born in the sixties that they need to try to stay alive at least until the movie is released. And for the record, not a fan of the new light saber...



8:48 am
Back to waiting...

9:27 am
Big good news: This will be my last chemotherapy infusion. Next time, they'll move me onto the pill version of the one chemo drug and drop the other. I'll still get an infusion of Avastin (assuming my urine protein isn't out of whack), but that only takes a half an hour and will only be every third week. 

Big bad news: At risk of being blunt, they still figure I'm basically dying. It seems the challenge with chemo, like so many things, is that the effects basically follow a curve defined by the equation f(x) = 1/x or, for those of you that have a hard time visualizing a curve based on it's defining equation (like me, as I had to look all this up), this:



The general consensus of my various oncologists is that I'm probably out somewhere near the 4 or 5 on that graph above, and so the impact of the chemo drugs I'm currently on is waning. So whether I go one or two more is more or less irrelevant. 

The bigger problem is that they'll move me on to the pill version and, in all likelihood, it'll have a significant impact to start, and then slowly fade. As today's oncologist put it, "eventually you'll have to decide what to do." 

My reading is that "decide what to do" is a euphemism for "go back on chemo or die" (or possibly just "die").

Of course, based on a sample of one, I suppose it's possible that my cancer will continue to respond to the pills and eventually I'll be determined to be cancer-free. Hope springs eternal.

Other bad news: Xeloda, the pill form of the 5-FU cancer drug, is not without its side effects. Most significantly, sores; both the weird mouth sores I've previously warned you not to Google, but also a weird rash that can turn into blisters and then broken blisters that breaks out on the palms of your hands and the soles of your feet.

So you give up tingling, painful fingers and toes, and instead get open sores on your palms and feet. Interesting trade off. If it weren't for the fact that I'm also giving up the 46 hour infusion (which I hate), I'm not sure I'd make the trade. But I gotta get off the infusion pump.

That's next time, though. For now, it's the standard infusion of Avastin, the chemo drug with the long complicated name I can't remember, and then the 46 hour infusion of 5-FU. But at least it'll be the last time -- at least for now. Hard to see choosing "go back on chemo" when it comes time to "decide what to do," but stranger things have happened. 

9:59 am
Waiting on the drugs to be delivered so the infusion can start. 

10:09 am
With nothing better to do, I looked up the side effects of Xeloda. Here's the list of common sided effects I found: low blood cell count, fatigue, diarrhea, hand-foot syndrome (this is the weird rash/sore thing described above), nausea, vomiting, dermatitis, and elevated liver enzymes. 

The less common side effects included: poor appetite, abdominal pain, low white blood cell count, low platelet count, mouth sores, neuropathy, swelling of the feet and ankles, fever, constipation, eye irritation, shortness of breath, headache, muscle or bone pain, dizziness, insomnia, dehydration, cough, blood clots, excessive sleepiness, confusion, seizures, loss of balance, nail changes, darkening of the skin, taste changes.

And now I'm a lot less optimistic about Xeloda. 

Back to waiting and looking at YouTube videos. No more Xeloda research. 

10:19 am 
Waiting...

10:22 am
Speaking of Star Wars, there is the very reasonable question of why, given the experience of the three prequels, anyone would have any interest in "Episode VII." The obvious answer is, George Lucas is no longer directing (if he's involved at all). By way of illustration, since nothing popular posted to YouTude can exist for long without a parody version appearing, here's the "George Lucas version" of the Episode VII teaser. 




10:29 am
The drugs have arrived. 

10:45 am
I was going to have an update -- and even wrote a paragraph -- but I changed my mind. But I'm not sure how to abandon that process once it's started without potentially losing the entire post. So this is a non-update update to keep the software happy.

The Avastin continues to flow.

11:10 am
The Avastin is done, so were on to the oxaliplatin. Two hours and counting.

11:57 am
I obviously used the last 45 minutes of infusion time to create my holiday card. (Enjoy!) The drugs are still dripping. Not much else to report at this time. 

1:13 pm
And that's it. The infusion is done so now they just have to hook me up to the portable pump -- for the last time (yay!) -- and I'm out the door. Easier to do all that without a computer on my lap, so I'm calling what should be the last of my liveblogs done. 

May the force be with you...

Monday, December 1, 2014

It Sounds Good in Theory -- Actually, No, It Doesn't

Although I probably shouldn't be -- we're talking billions of messages -- I'm frequently surprised by the coincidences the Internet throws up. Today's example: well-meaning, but ultimately creepy, communications from beyond the grave. 

Although I just learned of it today, since 2006 there's apparently been a company called Deathswitch which allows the users to schedule email messages to be sent after they die. The system sends you an email message on a sporadic basis, and as long as you reply it knows you're alive. Once you stop responding it figures you're dead, and starts the countdown to sending whatever messages you scheduled to be sent after you were gone.

Good in theory, I suppose, maybe, but then there was the Dear Prudence column in Slate which had a woman writing in looking for permission to stop reading the letters her mother had written as she (the mother) was dying a decade earlier. Mom had apparently written a letter to mark all the expected big events in her daughter's life -- birthdays, graduations, weddings, etc. -- and the woman was tired of having to focus on dead mom during all her big events. 

I can totally get her point, but imagine how much worse it would be if Mom had scheduled a bunch of emails rather than leaving a stack of letters. Out of the blue, this message from a dead person appears in your inbox. Granted, I'm not the most sentimental person in the world, but personally I don't think I'd find an email from some dead someone sweet or comforting or "sensational," to use the term the author uses to describe messages from the grave potentially containing "unexpected declarations of love, confessions of secrets or crimes, or the location of buried cash.

But who wants an "unexpected declaration of love" from some dead person? What good is that? If you love someone, tell them while you're alive so you both have the option to do something about it. "I always loved you, but now I'm dead" seems about as pointless -- if not aggravating -- a message as one could possibly receive. 

And "confessions of secrets or crimes?" Really? What are you supposed to do with a "Dear Son, I just wanted to let you know... I was a Nazi... I embezzled funds from my employer... I killed the neighbor's dog... Etc." message? If you kept your crime a secret while you were alive, why share it with people after you're gone? If you weren't willing to pay the cost of your crime by confessing while you were alive, why make your descendants pay for it by confessing it after you're gone? This isn't sensational, it's stupid (and potentially cruel).

Though not as stupid as the idea that someone's going to set up a message to be delivered after they die disclosing the location where they buried their cash. Yeah, that'll happen.

Regardless, none of this sounds "sensational" to me. Frankly, it sounds horrific. So rest assured world, when I'm gone you won't have to worry about me sending you emails (or letters) from beyond the grave. And if anyone out there is setting up their Deathswitch account, unless you're planning to tell me where you buried the cash, please feel free to leave me off your recipient list. 

If I need to hear from you after you're gone, I'll pull out a Ouija board. 

So Ends the Cancer Vacation

Vacation's over, I'm afraid. If all goes as planned, Wednesday will have me back on the chemo cycles -- but even if it doesn't go as planned, the psychosomatic symptoms have already started back up so cancer and chemo are back to being part of the daily reality.

Ah well, it was fun while it lasted. And I've still got one more day to enjoy iced beverages. 

And we'll see what Wednesday brings on Wednesday...

Thursday, November 27, 2014

Happy Thanksgiving (or Thursday)!

Time for a scorecard update:

Birthdays since diagnosis:          1
Thanksgivings since diagnosis:   1
Christmases since diagnosis:      0

Happy Thanksgiving, Americans! Enjoy your turkey, ham, lamb, tofurkey, veggieducken, or whatever it is that makes today more than just a Thursday for you.

For those of you who are not Americans, have a nice Thursday.

Wednesday, November 26, 2014

More From My Cancer Vacation Reading List

Being Mortal gets even better when you get to the second half, when the focus shifts from nursing homes to actually dying. Reading between the lines, Gawande's has two important lessons for how to have a successful death.

1. Don't let the doctors anywhere near you.

Gawande sites a study where the researcher asked the doctors caring for five hundred terminally ill patients to estimate how long those patients would live and then followed those patients. Seventeen percent underestimated how long their patient would survive, while sixty-three percent overestimated. And the average estimate was five times what reality turned out to be. So when the doctor tells you that you've got a year to live, there's a fairly high likelihood that you won't make it three months. 

More important, Gawande tells stories of patients and families who finally come to grips with the fact that they aren't going survive their condition only to have doctors come in and convince them to try one more thing -- intubation, surgery, whatever -- only to have that "one more thing" not only fail to add to the quantity of their life, but to seriously undermine its quality. 

As Gawande puts it, "We've created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets -- and have only the rudiments of a system to prepare patients for the near certainty that those tickets will not win." Based on the stories he tells, doctors aren't all that willing to concede the ticket's a loser either. 

2. Get real with your family members.

Gawande tells the terrible story of thirty-year-old woman diagnosed with lung cancer while pregnant. She has her baby and then descends into the seven layers of hell of contemporary cancer treatment -- round after round of chemotherapies that don't work, At every turn, decisions were made favoring long-shot faraway cures for the quality of life. Only in her final days does her family finally realize the benefits of palliative care on the patient and tell the doctors to stop inflicting her with more pain and suffering in the absurd hope of extending her life. 

Compared to some of the other stories he tells of patients who are able to come to grips with the fact that their dying, and identify how they want their final days to be, it's pretty clear which is the better option.

In fact, Gawande sites a number of studies that show that talking about how you want to go, and taking advantage of hospice and palliative care, can actually extend your life. As the author puts it, for terminal patients "you live longer only when you stop trying to live longer."


As Gawande puts it, the secret to aging and dying successfully is to have two kinds of courage: "the courage to seek out the truth of what is to be feared  and what is to be hoped.... [and] the courage to act on the truth we find." 

It sounds good in theory. But the first problem we patients face is getting to that truth. In Gawande's story of the new mother with lung cancer, and no point does any doctor actually come out and tell her she's going to die. When even your doctors don't want to confront the truth, is it really all that reasonable to expect the patient or their family to do so?

Tuesday, November 25, 2014

Cancer Vacation Reading

I usually spend a fair amount of time on vacation reading. Cancer vacation has proven no different, and I've spent most of my reading time with Atul Gawande's Being Mortal. Gawande's a surgeon in Boston, among a bunch of other things, and Being Mortal is about how the practice of medicine has basically screwed up how we die -- or rather, how we approach death. 

Let's just say, the man is not a fan of nursing homes.

Nursing homes aside, one of the most interesting bits he talks about is the work of Laura Carstensen, a professor at Stanford who's come up with socioemotional selectivity theory. In short, based on a bunch of psychological surveys and experiments, Carstensen figured out that the decisions people make about how to construct their social networks and live their lives are less a function of age, culture, class, etc., then the are a function of how much longer the individual expects to live. Twenty-year-olds respond very differently than eighty-year-olds, but survey a bunch of twenty-year-olds with terminal diseases and they'll respond like eighty-year-olds. Similarly, construct an experiment that has eighty-year-olds reasonably believing they'll live twenty more years and they'll respond to surveys like twenty-year-olds. 

Fascinating stuff, particularly in light of what the oncologists will and won't say about my life expectancy. At my very first appointment I was told I had six months to live without chemotherapy, and possibly five years on chemotherapy. Since then, though, it's been nearly impossible to get any sort of prospective life expectancy from any of the doctors. They hem and they haw, and throw out stories of patients with Stage IV colon cancer living ten years plus -- Sib4 is particularly fond of those -- but then they start throwing out qualifiers and hedging their bets, making it nearly impossible to figure out a reasonable set of expectations. 

I mean, it's probably a fair bet that I'll never collect on my Social Security -- and to all of you worried about the generally overblown projection that Social Security will go bankrupt before you're ready to retire, you're welcome -- but it's a lot harder to figure out how long the money I've got needs to last, One year? Five years? Ten years? The answer has a pretty direct impact on the choices I make, but getting an honest answer is impossible.

I suppose it could be worse. My remaining life expectancy could be what it is for most people my age: anywhere from thirty seconds to sixty years. Comparatively, planning for a range of thirty seconds to five years seems a walk in the park. 

Plus, I don't have to worry about winding up in a nursing home. 

Thursday, November 20, 2014

The Official Cancer Vacation Beverage

A lot of places and events have official, or at least semi-official, beverages. Hawaii's got the Mai Tai, for example, and Spain's got Sangria, a football game has beer, and the Kentucky Derby has the Mint Julep. 

I have decided that Cancer Vacation needs an official drink, and have further decided that the official drink will be...

...<insert drum roll here>...



The Kentucky Sidecar

1.5 oz of bourbon
1.5 oz of triple sec
1.5 oz of lemon juice
0.5 oz of simple syrup

But while the official version of a sidecar is shaken and served up, the Cancer Vacation version is served on the rocks. If, for the first time in six months, I can chew ice, I want to see that ice in my glass, not strained away and tossed in the sink. 

So have a Kentucky Sidecar* and celebrate Cancer Vacation. I certainly plan to.


* The classic sidecar, which swaps the bourbon for brandy, was my runner up, so if you're not a fan of bourbon try the classic. And a shout out to Jeffrey Morgenthaler's blog where I found the recipe. Morgenthaler's a bartender in Portland, and though he doesn't post frequently, the recipes he posts are amazing. And the blog's got a good search function so you can easily look up previous posts. (Seasonal hint: look up Eggnog. Ya-hum!)