What Do You Do When You've Been Home from Vacation for a Week?

You schedule your next vacation. 

Sib2 and I have just made arrangements for the second leg of the Goodbye Cruel World Tour. Leg Two takes us to Vietnam.

The plan is to fly to Hanoi, spend seven to ten days on a motorcycle tour of the northern two thirds of the country, then jump on a train to Ho Chi Minh City (aka Saigon) and spend the remaining days seeing the South. We're hoping that traveling north to south, rather than south to north, will avoid any Vietnam War jinxes whereby a planned couple of weeks turns into a decade-plus since we're capped at fourteen days. 

I have no idea where this picture I found on Google was taken, but I wouldn't object if our travels take us down that road. Regardless, I'm sure we'll see some interesting sights.

Oncologist #3 was pretty shocked that I'd elected to trade chemo infusions for Zeloda, but I couldn't make this trip (or anything similar) while under the original treatment protocol. There wouldn't have been enough time between the infusions.

So here's to Zeloda, and the freedom it provides. 

Another Milestone

If my memory and my math are correct, today is six months since I left the hospital. This is something of a milestone as I was told that without treatment the median survival post-diagnosis of stage IV colon cancer was six months. I, of course, opted for treatment, but for whatever stupid reason it still strikes me as meaningful that I've made it to six months.

Woohoo! for me.

Of course the marker I'm really shooting for is thirty months. Thirty months is the median survival for stage IV colon cancer with treatment. As someone who has always aimed for the top of the class, I'd like to at least wind up at the far side of the median. 

Plus, there's a lot I could do with another twenty-four months. People to see, places to visit, projects to finish. 

So a minor marker (and a brief blog post) for this six month achievement, but there's still a long way to go. 

Back on Track

So, yeah, on Wednesday I saw my third potential primary oncologist. It was an interesting conversation. A few rapid fire getting to know you questions -- where did you grow up? what do you do for a living? do you have any hobbies? etc. -- and then into an overview of the treatment plan the could offer. In short, a whole lot of genetic testing, followed by a whole lot of chemotherapy infusions of various flavors to be determined by the results of the genetic testing. 

And truth be told, under the right circumstances I would absolutely pursue treatment with this guy. He was clearly very committed to a very singular goal: keeping his patients breathing for as long as absolutely possible. So if I was the parent of small children, or was three years from completing the project that was going to win me a Nobel prize, or was building a sailboat in my garage -- or basically doing any significant thing that I needed a few years to finish, I would totally be down with this guy's approach to cancer treatment. 

But I don't really have anything significant I need to finish. Hence, for me it becomes a question of quality. Multiple years of dragging my infusion pump from my bed to my couch and back again are of little interest to me. 

So I'm going back to the SCCA. I still get an oncologist who only does colon cancers and a cancer-treating machine, but the folks at the SCCA seemed more willing to entertain the idea that as the person who has to live through whatever the treatment involves, I ought to have a say in what that treatment is. 

What it is for now is more of the same. An Avastin infusion followed by two weeks of Zeloda followed by a week off. Rinse and repeat until the tumors start growing again and then... who knows? We'll figure that out when the time comes.

Treatment won't start until next Tuesday, but at least I can stop worrying about where to find care. Well, for the cancer. I still have the challenge of finding an endocrinologist to manage my diabetes and a primary care physician to take care of whatever routine weirdness comes up outside the purview of cancer or diabetes.  

I figure I'll put that off until my insulin prescription runs out, and/or I start gushing blood or have some other crisis that requires healthcare. The search for an oncologist has pretty much consumed all of my available healthcare related brain cells. 

I'm Starting to Think Oncology Could Benefit from Term Limits

The more I read about this poor girl in Connecticut, the more annoyed I get. I'm sure there are interesting legal questions about when someone's self-actualized enough to make their own health care decisions, but who the hell cares? As a human issue, this is simply appalling. But while I find the actions of both the courts and the health care team to be appalling, what's really starting to bug me are the thoughts expressed by the so-called "experts." Prevented by HIPAA by saying much of anything, the actual health care team isn't saying much about the case; but there seem to be lots of oncologists willing to chime in. 

Here's my current favorite sound bite: "I would say, overall, 80 percent is probably a reasonable estimate of how many patients are cured. It would be higher if you're early stage.... The treatment's very good. It's all outpatient, usually well tolerated. Yes, patients lose their hair. Yes, there are risks to it. But in young, healthy patients, the vast majority of them get through it and go ahead and live essentially normal lives."

And here's why this annoys me. First, on behalf of the poor cancer girl, I'm offended. This guy basically reduces her objections to the loss of her hair, when in none of the articles I've read has she even mentioned her hair. Toxins, yes; hair loss, no. Moreover, even if hair loss was what's driving her, so what? Some of us would rather die than lose our kids, our pets, our jobs, our cars -- whatever. If hair's that important to someone, who are we to say it shouldn't be? 

Second, check out the weasel words: "probably," "usually," "essentially." Is this guy even listening to what he's saying? 

Part of the reason this bugs me so much is yesterday was my getting to know you visit with my third cancer center. In the course of the conversation the oncologist stated that he'd immediately put me back on chemo infusions because it still seemed to be working and "I hadn't had to be admitted to the ICU." Really? That's the standard of acceptable? A treatment that sends you to the intensive care unit can be terminated, but everything else is fine? 

This got me to thinking. My potential (and declined -- this guy and I clearly did not see eye to eye on the definition of quality of life) oncologist seemed to quality of life like this:

Your basic bell curve with the dividing line between good and bad defined by whether or not you wind up in the ICU. Problem is, I -- and I think most people would see the world more like this:

This is to say, I think most people would say you're already in the bad territory just by having cancer, and the line between acceptably bad and unacceptably bad really depends on the person in question. 

The problem with oncologists is that the population the interact with is composed exclusively of cancer patients. They're looking at that tiny curve in the corner, not the overall picture. Hence, term limits. The minute an oncologist reaches the point that they no longer shudder in horror at what they are asking their patients to go through, they ought to take some time out for recalibration. 

Speaking as a normal person and not an oncologist, "anything short of the ICU should be tolerated" does not strike me as a normal -- or, frankly, even reasonable -- standard. But it certainly seems normal for oncologists (at least the few I've met so far, and more than a few I've heard and read about). 

Personally, I'd say that's a problem. 

It Boggles the Mind

As a good lefty, I'm generally down with the concept that government can be a useful tool for solving problems. Then something like this happens. It's enough to make me want to buy a gun and a tin foil hat, and move out to the middle of nowhere so I can set traps for the black helicopters. 

I mean, seriously? A seventeen-year-old gets cancer, decides she doesn't want the chemo, has the support of her parents in her decision, and so, at the request of the medical team, the State of Connecticut steps in to remove her from her family and force her to undergo chemotherapy. Excuse the language, but how fucked up is that? 

I don't care if she thinks aliens are going to descend from the heavens and cure her with their extraterrestrial technology, nor does it matter what the odds of survival with or without chemo are, no one should be able to force another person to undergo chemotherapy against their wishes regardless of their reasons for that choice. 

Although I've never been there -- and Joe Lieberman notwithstanding -- Connecticut always struck me as a relatively progressive state. Clearly, I was mistaken. 

Idiots. 

Gearing Up for 2015

It's a little late, but let's set the stage for 2015. After nine cycles of infused chemotherapy, one round of pill-based chemo, and a change in insurers and providers, here's were things stand:

Neuropathy (feet) -- Terrible, and it seems to be getting worse as time passes. At this point my feet are constantly on pins and needles, with dull weird pain added in from time to time, especially if my feet get cold. This is making the morning shower, which requires stepping into a cast iron tub, something of a challenge. Socks annoy my feet, but not wearing them is frankly painful. Most importantly, the neuropathy seems to make anything that involves the use of the feet -- like, say, standing, walking or driving -- something of a challenge. 

Neuropathy (hands) -- Weird, and occasionally painful; especially at the tips of my fingers where even minor pressure can cause pain. Even better, with the neuropathy has come some weird degeneration of my fingernails which are now constantly splitting. As as result of that, I've had to clip the nails so low that the tops of my fingers are now equally sensitive to pressure. 

Weird mouth pain resulting from ice -- Gone (thank Gone). So if 2015 becomes too much, at least I can have a cocktail to make things seem better.* 

Health insurance conversion -- Changing insurance, especially in the world of HMOs and networked care where what insurance you have defines what doctors you can see, is a freaking nightmare. Technically, I should be getting an Avastin infusion and starting on the second round of pills this Wednesday. That will clearly not be happening (though with a little luck a may be back up and running within a week or so). I wish I could move to Canada. You might have to wait six years for a hip replacement, but I don't need a new hip; I just need a new oncologist. 

House projects -- Still mostly undone, and in fact rather than completing any of the partially completed things I started, I decided to install a new kitchen faucet. Faucet's been in for two days, works and doesn't link; but the tools are still strewn across the kitchen counter along with all the stuff from the cabinet under the sink. Some thing's never change. 

So things are all queued up for a great 2015. Okay, that was sarcasm. All things considered, I'm about as geared up for the new year as that bear up there. 


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

Closing the Books on 2014

Now that the first leg of the GCW Tour is over and the new year has passed, we can close the books on 2014. At risk of over thinking things (as this blog has clearly shown I'm prone to do), I have a few words to say about 2014.

It sucked.

Okay, that was two words rather than a few, but in this case two words seems more than enough.

Last Words on the West Coast (USA) Leg of the GCW Tour

Here are my conclusions from the first leg of the Goodbye Cruel World Tour.

First, you can eventually reach the point on even the best vacation when you just want to get back home.

Second, the California Highway Patrol has a very interesting view of public safety which, in my not so humble opinion, is actually contrary to public safety (while being very good for their bottom line). 

Third, Highway 1 really is one of America's best roads, provided you can drive it without a ton of other cars trying to share the road.

Fourth, Southern California would be a great place to live if you could just get rid of all the cars. There certainly is something to be said for actually seeing the sun on a regular basis, even in winter. But having to regularly drive in the region would give me an aneurysm.

Fifth, San Diego is a great little city for a short vacation. Well worth a visit.

Finally, a very important lesson for people with cancer and other conditions that could potentially kill them in a relatively short time:

When it comes down to a choice between taking that trip you've been planning, or heading back to the clinic for treatment, take the trip. The clinic will still be there when you get back, but by the time you finish the treatment you may no longer be in any condition to leave the house. This is, of course, a more specific version of my more general rule that if it ever comes down to even an implied choice between enjoying your life or lengthening it, go with the enjoyment. 

As I think I've written here previously, there's (a lot) more to life than just breathing. 

And This Is What Adolescence Tastes Like

At least mine did.

For those who have not experienced the pinnacle of Southern California fast food dining, that is an In-N-Out Double Double (Animal) -- well, actually, it's two of them plus some fries, but let's not quibble -- and that burger was a mainstay of my diet in high school and college. I spent more hours than I can count hanging out with my friends at In-N-Out.

Looking at the photo, it's sort of hard not to see the point of those who blame my Type I diabetes and colon cancer on those burgers. As tasty as it is, that is clearly not the healthiest meal the world has ever seen. But you know what? I wouldn't trade a single Double Double for an improved state today. 

They're amazing burgers, and I had great friends to enjoy them with. And if a right hemicolectomy is the price I now have to pay for meals of three decades ago, I'm happy to pay it. 

And this possibly last* Double Double was for all the friends -- far too numerous to try to list here -- who spent time with me at In-N-Out all those years ago. You were the best. 


* According to their website, in the last thirty years In-N-Out has spread from Southern California to Northern California, Arizona, Nevada, Utah and Texas. So it's possible that even without getting back to Southern California, there may be another Double Double in my future. And for all my fellow Southern California refugees in Seattle looking for a fix for their own In-N-Out habits, I recommend Pilchuck's Drive-In in Snohomish. It's not In-N-Out, but it's pretty darn close -- and very tasty in its own right. 

This Is What a California Road Trip Tastes Like

At least to me.

As a kid, my family made a number of road trips that took us between Northern and Southern California. And while my parents were not the type to stop at the various roadside attractions -- no Trees of Mystery, no Sea Lion Caves, no Winchester Houses; Dad was more likely to put his foot to the floor every time the signs for such things would come up in the hopes that we kids wouldn't notice and start whining to stop -- they were willing to stop and eat.

And for some reason, it seemed we always wound up stopping to eat at Pea Soup Andersen's in Buellton, California. So of course I had to stop as part of the GCW Tour.

All I can say is, eh. I mean, it's pea soup, and it's not bad (especially if you spring for some additional pork products to add to the soup base), but I'm not at all sure why it became such a mandatory stop.* But a mandatory stop it was and so in honor of the family tradition I stopped. 

That bowl of soup was for you, Mum. 


* Of course, I was fairly young at the time so maybe I'm remembering wrong and extrapolating from a single event, but I doubt it. I remember a vacation with Mum, a camping trip with Dad and Sib2, and at least one "move the family to Southern California" trips that involved pea soup. Could be wrong, but that's my story and I'm sticking to it.