I Have Found My Candidate

Yesterday was the third GOP presidential debate. For a person in my situation, one candidate stood out from all the rest. Check out this exchange between one of the moderators and Governor Mike Huckabee (emphasis mine):

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Moderator: Welcome back to Boulder, Colorado and the Republican presidential debate right here on CNBC. Governor Huckabee, you wanted to respond to the points that Senator Rand Paul was just making when it comes to Social Security. Your time, sir.

Governor Huckabee: Well, and specifically to Medicare, Becky, because 85 percent of the cost of Medicare is chronic disease. The fact is if we don't address what's costing so much, we can't throw enough money at this. And it's why I've continued to focus on the fact that we need to declare war on the four big cost drivers because 80 percent of all medical costs in this country are chronic disease. We don't have a health care crisis in America, we have a health crisis.

And until we deal with the health of Americans and do what we did with polio -- when I was a little kid, we eradicated it. You know how much money we spent on polio last year in America? We didn't spend any. We've saved billions of dollars.

You want to fix Medicare? Focus on the diseases that are costing us the trillions of dollars. Alzheimer's, diabetes, heart disease and cancer. Eradicate those and you fix Medicare and you've fixed America, its economy and you've made people's lives a heck of a lot better.

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As a patient with two out of those four diseases -- and if I survive the cancer long enough, possibly even all four -- can I just say, "Hallelujah, brother!" This is the kind of leadership we need. The kind of president who will just issue an order like "cure cancer" and it'll get done. Governor Huckabee, you have my vote sir.

What's that you say? Diseases can't be cured by executive fiat? That doesn't seem right. Governor Huckabee seems very confident that we -- or he -- could just decide to cure these diseases and it would happen. Who's already tried it? Richard who? What do you mean President Nixon "declared war on cancer" in 1971? If he did that, how is it possible that I have cancer? Huckabee's statement certainly didn't suggest a 45 year timeline to me. I mean, I wouldn't expect him to instantly cure cancer, diabetes, Alzheimer's and heart disease. I'd be willing to grant him 90 days or so. But 45 years? That can't be right. I'm betting people just haven't tried.

What do you mean researchers have been trying to cure those diseases for years? Mike's statement made it seem like we haven't even tried. He seemed to imply that we need his direction to find those cures. Wait. Stop. Can you repeat that? I wait to make sure I get this right: Cures are the result of medical research. The primary source of basic medical research in the United States are the National Institutes of Health. Republicans, of which Mike Huckabee is one, continually try to reduce funding to the NIH believing that it's not the job of the government to fund that work. So electing a Republican, even Mike, is far more likely to reduce the chances of curing those diseases than to actually cause them to be cured. Do I have that right?

But if that's true, it almost seems like you're saying Mike was lying. What do you mean all candidates lie? How can candidates lie? We expect and encourage them to lie? Excuse the language, but what sort of fucked up system chooses it's leaders based on which one can lie the best?

Welcome to America? What sort of answer is "Welcome to America"?

In Retrospect, I Should've Named Her Casper

It's too late now, 'cause I'm committed to "Kevin," but in retrospect I think Casper might have been a better name for the cat formerly known as Pumpernickel. 

After three days of leaving her locked in cat jail -- or, as the shelter people called it, a "cat sanctuary," or as normal people call it, the "bathroom" -- today I decided to leave Kevin free to roam the entire condo. 

Actually, that's only partially true. 

The whole truth is that I couldn't extract her from under the bed and so, after a lengthy period of trying and needing to get to work, I left her free to roam. I figured she'd poke around a bit and get more comfortable being out from under the tub. 

Nope. Not quite.

As a friend and Sib4 can tell you, when I got home today I very quickly became convinced that Kevin had forced her way through the mail slot in the door and taken a flyer. She was nowhere to be found. I looked in all the usual places, then all the unusual ones. I lifted up the couch to see if she'd managed to get under there. I dragged everything out from under the bed to make sure she wasn't there. I searched everywhere at least three times. No Kevin.

Then Sib2 came over so we could get dinner, and the two of us searched -- and found Kevin under the bed. All I can figure is that she found her way up into the box springs, which is why I didn't see her the previous three times I'd looked, and only came out when she was good and ready.

The cat's a freakin' ghost.

But at least I have learned to keep my bedroom door shut, and to keep duct tape over the mail slot. Better safe than sorry.

Two Important -- Or Possibly Crackpot -- Scientific Discoveries Involving Food

As someone who both a) has been diagnosed with colon cancer, and b) really likes bacon, I feel compelled to comment on the scientific headlines burning up the interwebs telling us that bacon, or rather processed meat, is as carcinogenic as smoking. As the Guardian put it in their headline, "Processed meats rank alongside smoking as cancer causes -- WHO."

Only in the sense that a manicure ranks alongside the amputation of your arm as arm surgery. Put another way, while smoking every day increases your chances of developing lung cancer by 2,500%, eating bacon every day increases your chances of developing colon cancer by 18%.

Oh, and that 18% increase doesn't mean that the baseline chance of 5% elevates to 23%. Rather, it means 5% is increased by 5% times 18%, or 1%. So 5% goes to 6%.

So despite the headlines, I'd say you're safer with a BLT than you are lighting up. 

And I would definitely suggest the BLT over a hot dog. A group called Clear Food did an analysis of the contents of 345 various sausages and hot dogs. At risk of oversimplifying, I think it's fair to say that there's a very good chance that what's in your hot dog, and what the label says is in your hot dog, are only vaguely related to one another.* The most shocking finding: 2% of the hot dogs sampled contained human DNA.

As Stephen Colbert put it on last night's Late Show, "It turns out my bologna actually does have a first name." 

And I am seriously regretting that Costco dog I got last weekend. 


* If you're a vegetarian, I'd suggest taking a pass on the veggie dog. 

Dave & Kevin

I forcibly ejected Kevin from under the bathtub. So she ran down the stairs to hide in the corner. Fair enough. Change is traumatic. But at least downstairs I have enough access to get a picture of Kevin with Dave. So here they are...

Dave and Kevin

Of course, Kevin has since returned to her spot under the bathtub -- and Dave to his spot on the shelf -- but that's okay. Small steps...

Alexander Has Nothing on My Day

I haven’t actually read it, but I have seen the cover of a book called Alexander and the Terrible, Horrible, No Good, Very Bad Day. I don’t like to brag, but even without having read the book, I think I'm pretty sure I’ve got Alexander beat. In fact, I will match the period of 5:00 pm 10/25 to 4:59 pm 10/26 against anyone else’s 24 hour period in any competition for the worst day ever.*

Think you can beat me? Try this on for size…

As I have reported here previously, the default emotion in my current situation is loneliness. Yesterday, I finally got fed up enough with coming home to an empty house that I took a drive with a friend to an animal shelter and adopted a cat. She’s a one-year-old female with a stupid name that I didn’t like, so I’ve renamed her Kevin.** Unfortunately, it appears that of all the cats I could’ve chosen, I managed to pick one that is just as misanthropic and anti-social as I am. Upon her release from the transport box, Kevin made a beeline for the space underneath my claw foot tub.Thus, in the last 24 hours, I’ve not actually seen the cat, except for either lying on the bathroom floor and looking under the tub or climbing into the tub and looking over the side where it curves around the back corner. The shelter where I got her said it could take as long as a week for the cat to adjust -– and I’m willing to be patient -– but it’s a little hard not to take it personally when even a rescued cat doesn’t want to hang out with you.

Moving on, at lunch yesterday my friend stated her opinion –- which others have shared as well –- that it was sort of nuts (ok, not the word she used, but close enough) that I still hadn’t been given a definitive answer on whether or not I would qualify for surgery. It was a fair point. The scan was more than a month ago, and that’s an awfully long time to wait for an answer. So today I emailed the nurse who supports my oncologist to ask the question yet again. Her answer was that I was not eligible for the surgery, and that the PA told me that at my 10/15 appointment.

Ahem.

There are two parts to that statement that deserve a response, and since the second pissed me off more I’ll start with that. As I wrote back to the nurse, no, the PA did not tell me I wasn’t eligible for surgery. What the PA told me was that she and the oncologist hadn’t actually discussed the scan or the surgery, but she’d be happy to tell me the results of my scan. Which she did: tumors in the liver, an indeterminate spot on my lung, and what appeared to be two more early stage tumors starting up on my abdominal wall. She also said she’d talk about the surgery with the oncologist, and that someone would email the results of the conversation. Which, of course, no one did. And while it might be reasonable to presume that, say, a healthcare provider could read between the lines of my PA’s description of my scan results and know that those results would render me ineligible for surgery, excuse the language, but I AM NOT A FUCKING HEALTHCARE PROVIDER. I’m only the goddamned patient. And if neither the PA, nor the oncologist, nor the nurse , nor anyone else does not say or write the words in a message directed at me, “you are not eligible for surgery,” then it seems somewhat unreasonable (to me, anyway) for everyone to assume that I know that I’m not eligible for surgery.

Morons.***

But of course there’s also the first half of that sentence: I’m not eligible for surgery. Let's repeat that: I am not eligible for surgery. For some reason I’m reminded of a statement from Bart Simpson: “I didn’t think it was physically possible, but that both sucks and blows.” As one might infer from reading this blog, I’ve done my best to keep my expectations grounded in reality and to not get my hopes up as new options were presented. This time, however, I totally bought in. I was almost convinced that they were going to be able to cut the cancer out of me and, without the horror of additional chemo, I'd get a bunch more years. Guess not.

I don’t really know what I can expect in terms of timelines now, but at this point I’m back down to just two, nearly equally lousy, options:

Option 1 – Ongoing Chemo
My oncologist would certainly recommend I continue on the regimen that we started back in September. The major downside of this one is that I’m just not sure how much longer I can work while undergoing chemo. Some of my co-workers like to argue with me, but I just don’t feel like I’m doing a good job anymore. I’m certainly not meeting the standards I set for myself. I’m always tired and, more important, so is my brain. I think at about half the speed I used to, and at times I can’t even get to right destinations anymore.

The flip side is that, since the chemo presumably extends my life, I can’t really afford to leave my job, either. It's not like I'd ever find another one. So the choice for Option 1 becomes a complicated question of how much short-term disability I’ve got left, whether or not I qualify for long-term disability, and, if neither of those are options, how long my employer will put up my ongoing screwball schedule.

Things to investigate when I'm not otherwise occupied.

Option 2 – The Blaze of Glory

Not to be morbid, but surgery struck me as the most cure-like of the options that were on the table. The rest is just trying to delay the inevitable. But since it’s inevitable, there’s always the option of cancelling all the oncology appointments, stop talking to the SCCA, throw away all the pills, and buy a room on a cruise ship headed around the world or an open jaw heading in basically the same direction. That might make for a reasonably entertaining last few months on the planet.****

The good news is that the only pressure to make a choice between Option 1 and Option 2 is my own. So I’ve got (a bit of) time.

Ok, enough about surgery. On with my day.

Last but not least, at about 11:00 am today I started to get that weird tickling in the back of my throat that tells me I’m about to come down with a cold. In retrospect, I probably should not have elected to spend most of the day yesterday driving around with the top down on my car.

So there you go. My last 24 hours. If you think you can beat that, all I can say is, I’m so very, very sorry...


* Dead children excepted. I will definitely concede that dead children trump most everything.
** Yes, after the minion.
*** Does it make me seem petty to say, I’m really looking forward to receiving my SCCA customer service questionnaire for this most recent visit? Usually I just toss them. This one, however, I think I’m going to fill out in excruciating detail.
**** A friend suggested cocaine and hookers, but I’m just not sure I have what it would take for my blaze to burn quite that brightly. I could barely bring myself to try medical marijuana when this whole cancer mess started, going out like Al Pacino in Scarface seems a little beyond me.

Holiday Gift Giving Suggestions #2

Ok, this really should've been suggestion #1, but if you need to buy something for someone over the age of forty -- and if they come from a lumpy family, give serious thought to dropping this to thirty-five -- you should give serious consideration to giving them a gift certificate for a colonoscopy.

Granted, a colonoscopy is not a terribly romantic gift. It's not a fun gift. It's not particularly easy to wrap. But depending on the situation, it could have a pretty big impact on someone's life. 

You can ignore the SCCA PR, but do take a look at the difference in the five year survival rates between Stage I and Stage IV colon cancer:

At risk of oversimplifying, the chart on the left, that's the people that got a routine colonoscopy while the chart on the right, those are the people like me who got to be surprised when the cancer finally made itself known in its own unique way. You'll notice that a lot more of the people on the left get to make the five year mark than the people on the right. What the charts don't tell you is that the people on the left got much easier treatment paths than the ones on the right. 

So, yeah, the doctors might say that you don't need a colonoscopy until you're 50, but as someone who came down with Stage IV colon cancer at 46, you have my permission to tell any such doctor that they can bite me. 

Got someone you love who's entering middle age this fall? Help them celebrate by sending them to get a colonoscopy. Or if you know someone who's well into middle age but hasn't had their colon examined recently, send them to the same place. A colonoscopy is a multi-generational, gender non-specific gift. And having one can be the difference between a bit of routine surgery and a long and happy life, and some extensive surgery, followed by chemotherapy or radiation treatment or a host of other really crappy treatment options that will fill up the remainder of one's very short life.

Why wouldn't you buy colonoscopies for everyone on your gift list? 

Holiday Gift Giving Suggestions #1

Soon it will be the holidays, and everyone will be running around trying to come up with gift ideas for their friends and loved ones. So I thought I'd throw out some ideas, though, admittedly, their applicability may be somewhat limited.

So here's my first suggestion. If you happen to need to buy a gift for someone who has been on infusions of irinotecan, but is now done, and won't be going back onto the drug again -- ever -- here's what you should buy them for Christmas, Hanukkah, Kwanza or whatever it is you celebrate: A brand new toilet. 

I guarantee it will be appreciated.

You see, I've been on irinotecan for a few weeks now, and I also have a relatively broad experience with various systems for managing human sewage. I've been in some awfully scary bathrooms in Vietnam and China, as well as a few in countries with infrastructure that can't support sending toilet paper down the sewer pipes so they put a little basket next to the toilet so you have a place to leave it. (If you're lucky, the basket has a lid.) I have been in campgrounds across the Northwest with bathrooms ranging from buildings with actual water to a hole dug in the ground with a toilet seat set on top of it, and most everything in between. I've been to music festivals, food festivals, art shows, and most every other kind of group gathering with way too few porta-potties for the number of people in attendance. 

In short, I have seen some very scary bathroom facilities, but I would probably choose any one of them over my own bathroom after a few weeks on irinotecan. I must've spent twenty minutes today trying to clean my toilet, and I'm still not entirely sure I'd call it clean. In truth, if replacing it wouldn't require touching it, I'd almost prefer to just rip it out and replace it every week or so than to have to try to clean it. 

Nasty, nasty business.

But if by some miracle I actually get off the irinotecan and have more than a few weeks of expected life remaining, I can guarantee that one of the first things I'll do is buy a new toilet and throw away the old one. 

So under the right circumstances, a new toilet can be an awfully nice gift. 

Closing the Loop

So I went to our benefits fair yesterday to talk to the health insurance people. The woman was pretty funny. When I mentioned the PR blurb that came out letting us know that patients would now be responsible for 20% of their health care costs she just laughed and said, “Yeah, some crucial information was probably left out of that statement.”

It turns out there is an out of pocket maximum. Granted, while they’ve designed that number so most patients will slowly make their way toward it over the first couple of months of the year, in my case I’ll hit it as soon as the bill for my first infusion is processed.

But at least I’m not going to be responsible for covering 20% of the cost of a year’s worth of cancer care. It’s interesting. Back when Obamacare was being litigated there was all this talk about how patients need to have more skin in the game so that they’d make more cost-effective choices about health care. It seems a reasonable assertion. But in my case, there are really only two choices vis-à-vis care: get treatment, to the tune of a quarter of a million dollars a year, or don’t.

And if it turned out that I truly had been responsible for 20% of the cost – if I had more skin in the game – I have to admit that definitely would’ve affected my treatment decisions: I would’ve completely stopped treatment.

I wonder if that’s what the advocates for “more skin” intended.

I'm Probably Just Repeating Myself Now

Have you ever gone on a road trip? If so, have you had that experience where you look down and notice that the gas gauge is getting awfully close to empty but you're in the middle of nowhere and aren't quite sure you're going to make it? You start slowing down in the hopes that the gas you've got left will go a little bit further and start looking for signs pointing to civilization.

It was a lot more stressful before gas gauges that tell you exactly how many miles you've got left, and GPS navigators that will direct you to the nearest gas station.

I've made a few road trips in my day, and as a few folks will attest, I've been known to push the limits of my gas gauge too far, and thus wound up pushing the car. I have to say, day to day life these days is starting to remind me of those feelings you get when you know you're running on vapors and you start desperately searching for a gas station.

Our lives are propped up by a variety of things -- partners, friends, kids, jobs, hobbies, yadda, yadda, yadda -- but in my case the current cancer treatment is starting to cause the few props I've got left to start to fall away. You can fake your way through some parts of life, but the longer this goes on the harder it gets to fake. 

I do wish I could get an answer on the surgery option. It would make it easier to figure out how much further I've got to go. 

It's the Little Things

It occurs to me that I may be overthinking this whole cancer thing. Yeah, it's cancer. Yeah, it's scary. Yeah, chemotherapy can be brutal. But in a lot of ways, there's not a whole lot of difference between being treated for cancer and having a nasty cold or the flu.

When you get right down to it, sick is sick. And even if you're just sucking down NyQuil and pulling the covers over your head, you're still dealing with being sick. And the problem with being sick, at least as I'm finding, is that there's just way too much that you're supposed to do on any given day that, now that I'm sick, I just don't want to do. But I suspect the same would be true if I was just fighting off a cold. 

Your mileage may vary, but when I'm sick I don't want to get out of bed, I don't want to take a shower and get dressed, I don't want to eat anything more complicated than cereal, I don't want to see or talk to anyone, I don't want to think complicated thoughts, and I don't want to deal with my responsibilities. I just want to lie in bed and sleep. 

If this was a cold I could get way with that for a week or two. So I suppose this is where cancer does sort of differentiate itself from being indeterminately sick. When you're sick, you can stay in bed for a week, let the rest of life lapse while you're recovering, and then get up, catch up and get on with life. But it's hard to just stay in bed for month after month after month. Eventually, you do have to muster the energy to at least accomplish the minimum requirements of adult life. 

Which actually leads to the next big challenge: how can you redefine certain aspects of your life so that they are no longer part of those minimum requirements. For example, I've always been resistant to the idea of setting up my bills to automatically pay. It just feels weird to me to have your employer automatically dumping your paycheck into the bank, and then your cable provider (or whatever) automatically sucking their payment out. But I'm starting to reach the point where I just don't want paying bills to be part of my adult responsibilities anymore. I don't mind spending the money, but the act of writing a check or filing out the little boxes online just demands way more energy than I want to spend. The same logic is going to have me hiring a house cleaner pretty soon. 

It'll be interesting to see how many of the things that normally make up day to day life I can get rid . But as soon as I think about that I start to wonder, if you get rid of all the little things that make up a life, do you still have a life?

But that's a thread my chemo fogged brain cells just aren't up to following right now. 

It Wasn't Psycho, But Still...

I will admit that Janet Leigh had a worse time of it as she tried to wash off the road dirt in Psycho, but I have to say that this morning's shower was somewhat traumatizing. Even when you're halfway expecting it, it's a very weird thing to get out of the shower, start drying off and realize that your white towel is now grey because most of the hair that was on your head is now stuck to the towel.

The chemo drugs used to treat colon cancer  are supposed to cause "thinning" of the hair rather than complete hair loss, but, not to split hairs,* at some point the difference between thin and gone is pretty hard to find. It seems I crossed that point sometime yesterday. Regardless, given how mangy my head looked, I decided it was time to trade the clippers for a razor. 

It's a very strange thing to not have any hair on your head. I assume I'll get used to it eventually, but right now it's really distracting. I've always had this habit of touching my head, and now every time I do I get this weird, what the heck happened to my head?, shock. 

But I suppose it could be worse.** Sib4 tells me that I don't have an oddly shaped head, or any freakish bumps or anything, so I suppose I can claim I'm doing it for fashion -- well I could, if there was anything else about me at all that qualified as fashionable. Sadly, fashion has never been my strong suit, as you can see pretty clearly here:

I'm just a bald guy in a shapeless and colorless sweatshirt.

The handsome guy next to me is one of my nephews. I suckered him into the picture because I have one somewhere of the two of us taken about a dozen years ago -- when I had a lot more hair and he had a lot less height -- and I thought it would be fun to post a set of before and after shots. Of course, I can't actually find the before at this point, but if it turns up in the next few days I'll add it.


* Ba-duh, bum. 
** And this doesn't even begin to deal with women undergoing treatment who have to respond to hair loss. Men have it easy managing this compared to women. 

Sleep, Feel Nauseous, Spend Half an Hour in the Bathroom, Rinse and Repeat

And that is how you spend a Saturday two days after an irinotecan infusion. 

I don't recommend it. 

Though it does give you a good excuse to wear your pajama pants all day long. 

As if one needs an excuse to wear pajama pants.

The Day Two Post-Chemo Run Down in Decreasing Order of Wordiness

1. As I mentioned in my post about my new t-shirt idea, I woke up wrecked this morning. It was all I could do to get out of bed. I probably wouldn't have bothered if not for the fact that today was cyborg day. I had to go to the diabetes care center to get the little sensor that will continually measure my blood sugar attached to me. It was actually a lot like getting the chest port accessed, except that they want intercellular fluid rather than blood. But the needle was just as big -- though temporary (thank god). The only frustrating thing about the process was when I mentioned that I'd had my infusion yesterday, the conversation eventually worked its way to it being suggested that I should've scheduled this for a time further from my infusion since that process includes steroids that do weird things to my blood sugars. I didn't have the energy to explain to the guy that I'd scheduled the appointment for last week, but the clinic called while I was in Budapest to move it. 

2. Those of you who wear your hair very short will likely recognize the experience of going to the barbershop and then spending the rest of the day scratching your neck and shoulders as all the little hairs that got caught in your shirt start poking at you. I'm now at the point where it's like that constantly for me as all my little 1/8" hairs are jumping out of my head and landing on my neck and shoulders. At least there's only so much longer this can last.

3. Although I still haven't reached the point of actually puking (again, thank god), the irinotecan is causing way more vague feelings of nausea than the prior infusions did. Nothing like sitting at your desk at work, feeling your mouth fill with saliva, and having to quickly figure out what you can do to keep whatever's in your stomach in your stomach.

4. It's never really been a problem for me to swallow pills. It is now. I'm having an increasingly hard time choking down the handfulls of pills I'm taking morning and night.

5. (Un?)Happily, Helena Keller was adopted. So it's back to the drawing board on the search for feline companionship.

6. Have I mentioned recently how much I hate chemo infusions?

Sometimes a Little Information Is Too Much Information

So my employer issues a weekly newsletter to its employees. About a quarter of what they send is information that someone thinks will be of use to us, and the rest are stories intended to make everyone feel good about working there. 

Today there was a story notifying everyone one that open benefits was about to start up and giving a heads up on some of the changes that we'd be seeing. 

Boy, howdy, was that information I really didn't need to be provided in the stripped down, bullet pointed format of the article. Frankly, it was terrifying. When your health care costs are running in the neighborhood of $25,000 a month (and with the addition of the irinotecan I wouldn't be surprised if that could double) being told that all of the health care plans are being modified so that 20% of the cost is the patient's responsibility is a little disconcerting. Start doing the math and it doesn't take much for the numbers to quickly add up to the point where what's coming in is less than what's going out -- especially since they're also reducing what short-term disability (which I'm on) pays out. 

Now granted, I would assume that there's some sort of maximum payout or other limiting factor that would prevent my health care costs from bankrupting me -- what's the point of having health insurance if there aren't -- but those details got filtered out of the brief article in the newsletter. I have to wait for the benefits brochure to come in the mail before I can find those details.

Which brings me back to my original point: I sort of wish they'd just said that the plans would be changing without trying to summarize how they'd be changing. At least in my case, the summary really isn't helpful. 

If I Was More Ambitious...

...I would start selling cancer-themed t-shirts. And after yesterday's infusion followed by a night of insomnia, I've come up with my first design. Probably wouldn't have the biggest market in the world, and certainly would be limited in the locations where you could wear it appropriately, but if I'd had one I certainly would've worn it today. 

More on today later. Right now I'm going to take a nap...

Reactions to $30,000 Thursday in Decreasing Order of Depressingness

1. I have hit the most depressing of milestones: for the first time ever, my weight now exceeds 250 pounds. 

2. My PET scan was a jumbled mess. I still have tumors distributed around my liver, but the PET also found indications of potentially cancerous stuff outside my liver -- i.e., in my lung and in various spots on the wall of my abdomen. The scan is limited in what it can indicate, particularly in the early stages so it could be not a big deal -- but if could also be a very big deal.

3. No answer on surgery as of yet as the PA hadn't discussed it with my oncologist. 

4. The irinotecan infusion kicked my butt. For about an hour after it finished, my brain was awfully fuzzy. Some food and happy hour beverages helped, but I can tell already I'm going to be paying a price for the infusion for a while to come.

5. The PA promised to get me an answer on whether or not surgery was a possibility in the next few days.

6. I was undefeated in the hands of cards played during the infusion. So while the infusion makes me fuzzy, it didn't make me so fuzzy that I couldn't recognize the right cards to play.

7. The SCCA gift shop sells the coolest playing cards. They're embedded with a three dimensional display that transitions between various relevant graphics, but they're light years beyond the 3D images you could buy when I was a kid. 

8. I may have found a cat. The friend who joined me for today's death march of oncology care has ties to an animal shelter north of Seattle. They have an affectionate cat which they named Helena when they got her. A short time later, the vet realized that she had some sort of medical condition affecting her eyes that was going to create long term troubles. So when the did they procedure to sterilize her, they also removed her eyes. So now she has a new name: Helena Keller. How can you go wrong with a blind cat named Helena Keller?* So unless she's already been adopted, I'll likely take a road trip this weekend to check her out. 

9. I get a pass on a chemo cycle. The next round is on November 5, which should be followed by a round on November 26, but I'll be on a cruise ship sailing past the Antarctica for that one so I get to skip it. 


* One additional piece of information: One of the XS's best friends is a vet who tends to adopt the broken kitties generated by her practice. One of her cats had also had its eyes removed. He was the sweetest cat, and if you just sat around watching him you would never guess that he couldn't see. He'd jump on things and off things without hesitation, just as if he could see them. 

New, and Not So New, Reasons to Hate Modern Medicine and Cancer

My current care does not have me in an upbeat mood, and I've started to make a list of the reasons why:

1. I hate being the last to know. I have to call my pharmacy four days in advance of my appointments in order to have my pills in hand when I'm supposed to start taking them. But when my doctor changes my dosage and tells the pharmacy, I get confused and frustrated because the pharmacy won't send me the quantity of the pills I think I need. And if there's been a mistake, my insurance won't pay for a correction. My doctor changed my dosage this week, and it annoys me that I didn't get a call or email letting me know that fact. I think I ought to be told before my pharmacist is. 

2. I freakin' hate chemotherapy infusions. Yeah, they're easier on me than on a lot of people, but I still bloody hate them. Chemotherapy isn't medicine, it's chemical warfare on a microscopic scale. There's a reason the UN prohibits chemical warfare. 

3. I hate chemotherapy infusions so much that I have psychosomatic responses to the idea of them. I started feeling lousy at about 11:00 am this morning, and it just kept getting worse. Eventually, I realized I was having an anticipatory reaction to tomorrow's infusions. Having the infusion is bad enough, do I really need to have an extra day of misery because my brain can't wait to get started? 

4. I'm not a fan of ignorance. It annoys me that I haven't gotten the results of my PET scan yet. 

5. Today I learned of a new wrinkle to the tale of oxaliplatin-caused neuropathy: turns out oxaliplatin not only causes neuropathy, but it causes permanent neuropathy -- i.e., permanent nerve damage. So even if I qualify for surgery, have the cancer cut out of me, and go off chemotherapy permanently, there's a good chance the feeling will never come back to my toes. 

6. I miss feeling my toes.

7. I have never been a body guy. I'm a brain guy. It's annoying the crap out of me to have to so continually focus so much of my energy on my body. I would very (very) much like to go back to ignoring it. 

8. I've mentioned before the annoying fact that I don't remember life before diabetes, and the fact that anything body-related now has to go through both the diabetes filter and the cancer filter. Now it's worse: I've reached the point where I don't really remember life before cancer. I don't recall a time when I wasn't tired, or when I could feel my toes. 

9. I like certainty. The lack of certainty in cancer treatment is starting to annoy me. Just once, I'd like to hear a definitive outcome rather than a range of possible eventualities. 

I'm sure there's more, but I'm trying to limit my complaints to single digit numbers.

Everyone Needs a Fight Club

Tonight was fight club. It was a small meeting, but it reminded me of something I should mention: everyone needs a fight club.

I really wish I'd found this group fifteen months ago when I was first dealing with my diagnosis. It would've been useful to have been able to talk to people who had already gone through what I was going through and to take advantage of the things they'd already learned. It's helpful to not feel quite so alone. 

So a word to the wise: should you ever get a diagnosis of some horrible and potentially terminal disease, or if someone you care about gets such a diagnosis, take the time to locate the corresponding fight club and attend a few meetings. You might find that it makes things easier. 

Easier -- which is not to say easy. 

Here We Go Again

I spent today at an all day meeting for work. It was a perfectly fine meeting, and unlike most of the things I do at work, actually had some relevance for the blog.

Although there were breaks and a few interactive moments, the bulk of the time I spent sitting at a table with a dark blue table cloth and a single sheet of paper (the agenda) in front of me. All of which was fine until I started to notice that my little spot at the table was beginning to look an awful lot like a barber shop. This is to say, there were all these little hairs, mostly grey but a few brown ones, littering my spot at the table. 

Eventually I realized that the my recent chemo infusion was combining negatively with my unfortunate habit of rubbing my hand over my head when I'm thinking. Based on today's evidence, it would seem that every time I touch my head the hair starts leaping into the surrounding space.

Thus, it seems pretty clear that I will soon by repeating my previous impersonation of a moldy egg. I'm not sure if it's a good thing or a bad thing, but the chemotherapies used for colon cancer don't cause you to go bald, though they do cause your hair to get rather thin. Thus, rather than looking like a nice, fresh hard boiled egg you wind up looking like a hard boiled egg that fell behind the refrigerator and was forgotten. 

It is not a good look generally, and I suspect the fact that I'm thirty pounds heavier than I was the last time I was receiving chemo infusions isn't going to improve it any.

Too Bad I'm Not an Elephant

It would seem elephants are notably cancer resistant. Given their size and longevity, they should be dropping dead from cancer at rates far higher than they actually do. While as many as 25% of humans can expect to die of cancer, it seems just 5% of elephants will do so.

Naturally, scientists are curious about this and a few just published an article the Journal of the American Medical Association explaining why. It seems thirty-eight of the genes of an elephant, as opposed to just two for humans, can manufacture a protein called p38 that works to repress tumor formation. In short, and probably completely wrong non-scientific terms, when the cell starts to mutate the protein forces it to commit suicide so that the mutation doesn't replicate. 

Lucky for the elephants, though in fairness elephants don't really seem all that lucky in any other way so maybe they deserve to be somewhat cancerproof. Actually, what they really need is to be bulletproof. 

Of course, given how things tend to work, right about when scientists figure out how to use elephant DNA to create a cancer vaccine will be just about the time we manage to hunt the things to extinction. 

It's Been a Long Week

Sorry for the lack of updates, but it's been a long week. Actually, it's been a sleepy week. At least twice this past week I got home from work at about 6:30, read the new Neal Stephenson novel for about an hour (until my eyes gave out since I have yet to utilize my new prescription), and then decided to take a nap which turned into eleven hours of sleep. 

Have I mentioned lately how much I hate chemotherapy infusions? 

In fact, that's part of my current problem: I'm starting to think my oncologist and I have gotten onto different pages in the playbook. Some of this is the result of the sudden appearance of surgery as a possible option. It would be awesome if surgeons could just just cut the cancer out of me, and would totally change all my current calculations, but until I get final word from the tumor committee it's just a random idea. Random ideas aren't really helpful, leaving me in this weird liminal space where I've got no way to make an informed decision as there's no actual information. 

The other problem is the effect of the ininotecan infusion. I've only had one and, quite frankly, I already hate it. So the question is, are they giving it to me as some sort of longer term plan to actually get rid of the cancer (acceptable) or are they giving it to me to try to try stretch out my life while at the same time grossly reducing my capability of actually living a life (unacceptable). 

I'm realizing I got so sidetracked by the idea of the clinical trial that I forgot to ask the right questions about plan B. It wasn't until I was sleeping away 15% of my time in Budapest that I realized there were some questions I need answers to, like what the point of the irinotecan infusion is.

It should be an entertaining conversation with my PA on Thursday. But until then, things seem a less definitive than they have been. I, for one, do better with definitive.

Back to Normal Life

I'm back in Seattle, back to work, and back to the usual song and dance. I've got two more days on the Xeloda, than I get a week off before we go around again next Thursday. The big question now is whether or not my PA will give me the results of the PET scan or if I'll have to wait for my next appointment with the oncologist. 

If I had to guess, I'd lay odds the PA won't have anything to tell me. 

But I've been wrong before. 

But that's not 'til next week. This week I've just got to get back on track with all my pills, and figure out if there's not some way to increase my endurance. It was a little disappointing to have to spend the last day in Budapest sleeping. I'd like to avoid a similar occurrence on the next trip.

The GCW Tour, Budapest: The 2015 Global Award for Pointless Queuing

I am pleased to award Hungarian airport security this year's award for pointless queuing, which required me to actually travel through Hungarian airport security thus saving all of you from the task. 

The Budapest airport is not a large airport as these things go, but they are well indoctrinated in the social niceties. Imagine for a moment that you're in the line headed to security. You've got your shoes untied, your laptop is out of the bag and ready to go in a bin, as is your toothpaste which is the only liquid you still carry. You are ready to dash the security and get to the gate. 

There is one small problem, however. The woman in front of you is a grandma who spent her time in Budapest shopping. She's got her rolly bag, a purse and some shopping bags. She's also wearing two sweaters and a coat and, were you to guess, you might think she's never seen a plane much less participated in everyone's favorite post-9/11 security theater. So as you approach the security line you notice that she's now rooting around in her bags and generally doing everything but getting her crap on the belt that will take it through the scanner.

So, well trained in the intricacies of airport travel, you do the natural thing and go around her. Grandma can take all the time she needs as long as I'm not waiting behind her.

But not so fast. This in Hungary. There's no going around in Hungary. The guard gives me two choices: get back behind grandma or miss my flight. So instead progress being made while grandma does her thing we all stay backed up behind her waiting for her to get her bags sorted out and on the belt, along with her multiple coats, and the rest of her crap.

And I thought American airport security was stupid. 

The GCW Tour, Budapest: Last Day

Today is the last day in Budapest and, well, I basically wasted it. My accumulated health issues finally got the best of me so I spent the day in bed. No fun. As noted previously, this was an awfully long way to go to sleep.

The problem actually started last night when I stupidly took some headache pills laced with something to make you sleep. At the time in made sense -- lack of sleep was getting to me -- but in retrospect stupid, stupid, stupid.

Here's the problem: When you sleep, you brain turns short term memories into long term memories, but only if it's not busy trying to keep you alive. In my case, my blood sugar dropped overnight and the sleeping pills kept me from waking up, so my brain was focused on keeping me alive and as a result I woke up all weird and disoriented. It's hard to move through the day when you don't really recognize where you are or why there's a bunch of people in your space when you normally live alone. About all you can do is scarf down a bunch of food and go back to bed in the hopes that your brain can make sense of the world with a little more time. 

And by little more time I mean about six hours. 

Add to this the ramifications of all the cancer drugs and I'm something of a mess. It's going to be a long trip home, I'm afraid. 

We're up at 5:00 tomorrow morning to grab a cab for the airport, and arrival home isn't scheduled until sometime Sunday. I may post more if I get bored, but it's equally likely that I won't have anything to add until the end of the weekend. 

The GCW Tour, Budapest: Road Trip

Since I never go on them, I'd forgotten how much I dislike organized tours. I remember now.

Since Vienna is only two hours by car from Budapest, our resort had been hawking a tour to see the city. Since none of us had been to Vienna and were unlikely to be back in the neighborhood anytime soon, we elected to go. It was, to say the least, an adventure.

The trip was originally supposed to take place yesterday, but on Tuesday the social director approached us and explained something about rain and clouds and weather and asked, since we were the only ones booked for the tour, if we could move it to Thursday. Fine by us, so we moved it. This gave Sib1 two days to worry about what kind of vehicle we'd be in, since some of rides have taken place in a rather small sedan.

But this morning the guide/driver arrived with an Opel station wagon. And with just the four of us in the car, it was actually pretty roomy. Then came the drivers first question: would we mind if his wife came along with us? Now this was phrased as a question, but it wasn't really. It was just a nice way to let us know that the spouse would be riding to Vienna. Then came the second wrinkle: she might be bringing a friend. Interesting. Not sure why we don't know whether or not that's happening, but there are two seats in the way back so we can roll with it. 

So we drive the 45 minutes into Budapest and meet the wife. At this point, driver begins calling on his cellphone looking for friend. No friend. We'll wait a few minutes. Driver starts to dial again. Older woman shows up. Is she friend? Why yes, yes she is, and here comes her husband.

Now here's where things get strange. By all indications, wife only speaks Hungarian. Woman who's approached only speaks Italian. Husband to woman who approached speaks Italian and English. So how, exactly, are these her friends? Clearly, they aren't. Clearly, they are fell members of the tour which for some odd reason the driver has elected not to describe as members of the tour. Why not? No idea. Never did figure that out.

The other thing I didn't figure out is why the driver came and got us before picking up wife and "friends" in that our hotel is on the way to Vienna from Budapest. Going the way he's gone would be like driving to Chicago from Seattle by way of Cabo San Lucas (though the distances are much shorter). Sure you could do it, but why would you? We got to spend an extra hour and a half in the car for no particular reason. 

So now all seven of us are packed in the Opel. Apparently, the guides wife keeps falling asleep on Sib1 and BiL as she's in the back seat between them. (Standing a head and a half taller than everyone else, I've got shotgun.).After about twenty minutes the Italian in the back starts asking when we're going to stop for coffee. Driver tells him forty-five minutes or so, at about the halfway point. There we'll stop for coffee and pastry.

Eventually the time passes and we stop: at a gas station with a mini mart that sells espresso and pastries from a case. Oddly, it wasn't half bad, through I can't say it was exactly what I was expecting. Soon we're back on the road, but only after Italian has a cigarette so we can all get trapped with the smell in the car.

Now comes the question of what to expect at the boarder. The driver tells us it's possible that there could be as long as a three hour wait due to the immigration crisis leading the police to stop everyone. Or not. We won't know until we get there.

We get there and roll on through. 

An hour later we're in Vienna, and our first stop is the palace whose name I forget but which basically served to house the breeders for three or for centuries of European royalty. As far as palaces go it seemed nice enough, but I can't I haven't seen better. I can't really prove it, though, since they wouldn't let you take pictures.

After the palace tour -- which, I might note, the Italians didn't take -- we got back in the care. Wife had disappeared on her own agenda, so at least we had some elbow room. The Italian, however, was less interested in elbow room than lunch. Before we could eat we had some stops at various statues and important buildings. Soon, though, we made it to lunch and the Italian bailed on the tour. He'd wait there while we -- and his wife -- finished the tour of Vienna. 

So we saw the church where Napoleon was married, and where the one child of the Empress's sixteen that was allowed to marry for love was buried. We also saw Vienna's major cathedral, the GPS coordinates where a number of famous musicians died, and a statue commemorating the plague.

All things considered, I can't say Vienna made it to the top of my list of favorite European cities. It was nice enough -- and our guide actually turned out to be really educational and very entertaining -- but there were just way too many hurdles for Vienna to clear for me to categorize it as worthwhile.

It didn't help that city starts out ugly, and then gets pretty, but all the pretty is currently being refurbished and/or marketed, and so the ugly has pretty much taken over. 

As usual, a few pics of a few things we saw...

Lots of wind farms between Budapest and Vienna

Dave found friends at the mini mart

Austro-Hungarian border crossing

Breeding grounds, er, palace 

Rather nice city hall building obscured by PS4 advertising

Statue of empress and mother to sixteen future royals
(unless I'm getting more than one confused)

Statue famous for showing a horse on two legs

Terrace where Hitler shouted after the Nazi take over of Austria and/or
where Indiana Jones and the Last Crusade was filmed,
depending on your point of reference

The kangaroo thing comes up a lot

Church where Napoleon got married

Tomb where only royal who married for love is buried

Cheery wall behind which was stored the
46 hearts of the Hapsburgs

Holocaust memorial

The GPS coordinates where Mozart died,
and a luggage store

St. Stevens Cathdral

Inside of cathedral

Plague memorial