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!)

Wednesday, November 19, 2014

Cancer Vacation

I just realized that it's been two weeks since my last chemotherapy cycle and now I've got two weeks before the next cycle. Four weeks between cycles. 

Now I get two weeks of beverages made with ice. Two weeks -- maybe! -- of reduced neuropathy. Two weeks for my digestive system to possibly return to normal. And most important, another week for my taste buts to recover before Thanksgiving rolls around.*

It's a cancer vacation.  

I'm only one day into it, and I'm already loving my cancer vacation. I actually had a drink with ice for dinner. Yay ice!** And two more weeks without side effects sounds pretty fabulous. Especially since it would be followed by just two cycles -- at most; bad blood could lower that number further -- and then a real vacation. 

I miss vacation. But for now I'll definitely take my cancer vacation. 

* My oncologist seemed surprised I didn't want to come back for Cycle 9 next week. Oh yes, let's start the Thanksgiving weekend with a round of chemotherapy.

** While I'm told the low white blood cell count means I should be paranoid about germs, two weeks with beverages with actual ice are totally worth the germ paranoia -- especially since I'm not really a germ-o-phobe so I'm probably just going to ignore that part of the equation.

The Cycle 9 Chemotherapy Liveblog

Today is Cycle 9, assuming my oncologist doesn't change things up.

It might also be more entertaining than usual as there's a nurse being trained to work the infusion clinic, so I'm getting a lot more narration about what's going on than is typical. So far, I've learned all about how they manage the "sterile field" when they're inserting the line into my chest port. I've also learned what steps in the protocol annoy the nurses like, for example, the requirement to scrub the site for thirty seconds when sterility is established after fifteen. 

I'm hoping the trainee will be around for the rest of this adventure so I can hear more. It's interesting as a patient to get a glimpse of the clinic's backroom operations. They're usually pretty good about hiding that, I think. 

But for now I'm waiting for the lab results so I can meet with the oncologist to get clearance for the chemo, or not. 

8:22 am
Lines in, blood drawn, sitting in the waiting room...

8:31 am
Checked in for the doctor's visit. I've gained four pounds since my last weigh in. Today's scale has me at 218. Must be all the eggnog lattes I've been drinking. Now waiting for the doc, who just walked into the patient's room across the hall so I suspect it'll be a few minutes. 

8:58 am
Well, nevermind. My white blood cell count is too low to give me the chemotherapy drugs so today's cycle has been cancelled. And while I had the option to come in next week, chemotherapy the day before Thanksgiving sounds terrible. So I get a two week break -- and the total cycle count may have just dropped to ten. We'll see.

But for now the liveblog is over. Lacking anything better to do, I guess I'll go to work. 


You have been warned.

I don't think I can avoid acknowledging this unfortunate truth of cancer treatment any longer: chemotherapy and the human digestive system are not designed to get along.

Under normal conditions, one might compare the digestive system to a dimmer switch. There are a variety of settings, and while some are a little harsh most are reasonably tolerable. Once you start chemotherapy, however, your variable dimmer gets replaced with a mostly dysfunctional bi-polar on/off, and your poor digestive system starts to operate on two settings: Setting 1 is "Gee, I don't remember eating a bag of concrete, but I guess I must have"; Setting 2 is what the hosts of Top Gear, with apologies to their Boxing Day audience, referred to as "brown rain" (remember: I warned you). And your poor digestive system basically bounces between these extremes with little rhyme or reason.

Then, of course, your health care provider wants to help mitigate this unfortunate situation so they start pushing drugs. There are a lot of over the counter drugs you can take for a digestive system that only wants to operate at the extremes, but with chemo you're operating at both extremes. And when you add drugs to the mix, pretty soon you can't tell if you're taking this drug to address the actual state of your system or if you're taking the drug to offset the effects of the last drug you took. 

But I think the worst of it is the way the digestive system suffering the effects of chemotherapy starts to communicate with you. Under normal circumstances, the digestive system seems to behave much like the P.G. Wodehouse character of Jeeves, subtly letting you know that nature is calling -- no rush, take your time -- but eventually insisting that you must respond. But once you start chemo, your digestive system transforms from Jeeves to Norman Bates:

"You gotta go" (stab, stab, stab). "No really, you gotta go right now" (stab, stab). "Now!" (stab, stab. stab). So you rush off to the facilities, only to be told "Only kidding" (but stab, stab anyway, just for the hell of it). 

Occasionally I wonder if my surgeon didn't possibly leave a scalpel in my abdomen. A missing scalpel might actually be better than a digestive system that routinely decides to create stabbing pains for no reason. 

So chemotherapy and digestion, not a good combination. But I suppose it could be worse.

Tuesday, November 18, 2014

I Have an Unremarkable Spleen

I got today's scan results in just a couple of hours. I understand about half of what was in the report. Here’s a summary of the parts I more or less understood:

My lymph nodes are no longer enlarged -- at least I’m assuming that’s what “no mediastinal lymphadenopathy” means, based on a Google search. And given the SCCA oncologist's concern with my original lymph nodes, this is a very good thing.

I have a small amount of “scattered subsegmental atelectasis” in my lungs, which Google tells me means some of the sacs in my lungs have collapsed. (Hey! Now I have an excuse for being such a lousy hiker.) There’s also a “pulmonary nodule” 4.4 mm in size which is the same size it was in the last scan. But as my brother learned talking to his doctor, we're all somewhat lumpy; as long as the lumps aren't growing or changing you're basically okay. So apparently I can ignore this unchanging lump in my lung for now.

I still have six “hepatic masses” in my liver, but they all seem to be about a centimeter smaller in each dimension than they were at my last scan. It’s been a long time since geometry, and tumors aren’t likely to be exactly spherical, but if my approximate, vaguely recalled math is more or less correct, a 3.5 diameter tumor that becomes a 2.5 diameter tumor has lost about 64% of its volume. So that’s got to be good news. The bad news is that 2.5 cm still seems pretty big to me, so I suspect my primary oncologist isn’t going to want to take me off the aggressive chemo just yet.  

The radiologist also noted evidence of a partial colon resection, which is a good thing as I’d hate to think they can remove a third of your colon and not have that show up in a scan. But more important, they found no “inflammatory stranding” which I assume would be signal for infection. 

Finally, my spleen was noted as “unremarkable,” as were my gall bladder and kidneys. Reading my scan report, I’m starting to think that the best thing an organ can possibly be is unremarkable. I wish all of my insides were unremarkable.

But if my guts have to be remarkable, it’s nice that the remarks are letting me know that the cancer is shrinking and I'm still on track to be a "good responder."

Monday, November 17, 2014

Again With the Scanning

Since my last round of chemo was Cycle 8, and eight is evenly divisible by four, it's once again time to scan.

My appointment is for tomorrow at 8:00 am. Normally, this would be exactly perfect. However, while my oncologist wanted the scan done between Cycles 8 and 9, the radiology center that just three blocks from my house had a five week backlog on appointments. Thus, I have to drive across town at the worst possible time to get scanned at the Bellevue clinic.

Seattle to the Eastside for an 8:00 am appointment. About the only thing worse would be the Eastside to Seattle for an 8:00 am appointment, though it's actually pretty questionable which direction is worse.

This time we're hoping for additional cancer shrinkage, not only because cancer shrinkage is good, but it also might facilitate an early transition to maintenance chemo (i.e., pills) over more infusions. In short, am I still on track to be a "good responder" or am I now on a different path.

We'll see...

Thursday, November 13, 2014

Back to the SCCA

So today I had a follow-up visit with the oncologist at the SCCA. It was interesting. A few things I learned:

1. Nothing changes a conversation with an oncologist like the statement, "I'm not doing anymore chemotherapy after 2014." Suddenly, options start falling out of the sky. Who knew, for example, that there's a pill form of one of the chemo agents I'm on? 

2. Apparently, there are "good responders" and "poor responders," the difference being how the person responds to chemo over time. But for a good responder, there's a reasonable expectation that chemo can shift from aggressive, to non-aggressive, to pill forms, to eventually nothing, even with a non-treatable cancer like mine. So far, I am a responder, but they won't be able to say if I'm a good responder until after a few more scans.

3. While I was willing to take the last three cycles as planed, the SCCA oncologist thought that having already done eight, I could reasonably be shifted onto something less antagonistic. So, yay! Of course, this assumes that my next scan -- to be taken on Tuesday -- shows similar signs that I'm a good responder (i.e., continuing reduction in tumor size). But it's nice to think that there's a possibility I could be off the 46 hour pump before the end of the year.

4. I'm still losing weight. Another two pounds since last Wednesday's pre-chemo check in. This despite the fact that my only significant source of calories for the past week have been eggnog lattes. Expensive habit, but at this point one of the few remaining foods that still tastes like food. 

5. No surgery, or other esoteric liver treatments, for me. Too much cancer, too widely dispersed. Chopping out the nasty pieces wouldn't really work, and would in all likelihood result in a relapse o the cancer; and radiation treatments, while potentially curing the cancer, could very well leave me with cirrhosis of the liver. That would be bad, as once my taste buds are back and the weird reaction to iced beverages is gone, I fully intend to have a drink. Probably more than one.

But all in all, things seem more positive today than they did yesterday. But next up, another CT scan on Tuesday to see if all these new options continue to be available or if I'm reclassified as a poor responder. Poor responder would be bad.

Winter Chemotherapy

I used to think I was not a winter person. Now that I'm on chemotherapy, I know I'm not a winter person. Winter weather and chemotherapy don't get along.

Temperatures this past week in Seattle have been decidedly wintery. They're also wreaking havoc with my neuropathy. Most notably, I now seem to have neuropathy in my nose. They didn't mention the possibility that the chemo would affect my nose, but I have to figure that's what it is since I've never experienced this before, not even when I spent winters in Iowa. 

It's very weird not to feel your nose, even when you're touching it. 

I fear it's going to be a long winter.

Monday, November 10, 2014

Smart or Stupid? Only Time Will Tell

Open enrollment ended on Friday and I had to decide whether to stick with Group Health or switch over to Regence. It was basically a choice between inexpensive, convenient health care, that carried with it no attempt to actually cure my cancer, or expensive, inconvenient health care, that might -- emphasis on might -- have something better to offer in terms of treating the cancer.

I went with the complicated, expensive option.

I'm not actually convinced it was the smart choice, but nearly everyone I talk to disagrees. Others seem to have a lot more faith in the local cancer centers than I do.

So I'll finish out the year with Group Health -- and finish out my remaining cycles of chemo -- and then see what SCCA, Swedish, Virginia Mason and any of the other cancer centers in the Regence network have to offer. 

If it's just wait for the cancer to come back and then stat the chemo back up, I'll know I made the wrong choice. But if someone has something other than chemo to offer up, it'll have been the right one. Or maybe I'm kidding myself, and I'm facing the same situation as the cow.

Guess we'll find out in January. 

A Philosophical Inquiry That Basically Boils Down to Self-Pity

Modern life is missing something.

Those of a Judeo-Christian religious bent will no doubt recall the story of Job, who's living a pretty posh life until God and the Devil place a bet, and poor Job winds up in a pretty miserable state. Job's friends, of course, start asking Job what sin he committed to warrant the treatment he's receiving. 

And then there's the ancient Greeks and Romans. If any of the various mythology-based movies of the last few decades remotely resembles the reality of the day,* then here's another case where bad times basically boiled down to a question of which god the sufferer pissed off, and what sacrifice was necessary to make appeasement. 

Or we can talk karma. Here again we've got a philosophy that argues that crappy things happening are just the universe responding to whatever crappy thing the sufferer did. What goes around comes around and all that.**

And while I'd argue that there's a certain measure of malevolence in suggesting that someone suffering bad times did something to deserve it, I'd also argue that there had to be some comfort in being able to look to the sky, shout "What the hell did I do?," and reasonably expect that there's actually an answer. 

'Cause frankly, I want to know what I did, or who I pissed off, to warrant the year I've had. Increasingly, I'm finding that "random chance" is just a woefully lacking explanation. 

* Yeah, yeah. It's a questionable assumption, particularly when one takes the recent Pompeii into account. 

** It is, of course, interesting that folks seem far more willing to accept that good things happening to them are a function of their good actions than that bad things happening are a function of their bad actions. 

Cycle 8 Round-up

It's official. The chemo cycles are now insurmountable. Used to be I could spend the day getting poisoned, and then go back to work. No longer. This was the second time the chemo has basically laid me out for four days. I wouldn't have thought it possible to sleep for eighteen hours in a day, but at this point once the chemo starts sleep is pretty much all that interests me -- to the tune of about eighteen hours a day.

Twelve over night, plus another six strategically deployed throughout the day. Which doesn't leave a lot of time for updating the blog. Sorry. But at least Saturday had a few hours of sunshine so I was able to spend the my few waking hours driving the Roadster and meeting up with BiL4 and my nephews to see Big Hero 6.

Aside from the overwhelming need for inordinate amounts of sleep, it's been the usual package of side effects: generally feeling lousy; terrible response to even slightly cool beverages (the beer mitten is no longer sufficient); neuropathy (and may I say that sleeping with gloves on is just weird, but it's that or be kept awake by painful fingers); etc., etc., etc.

But now I'm down to just three more cycles. Unfortunately, the idea of just three more cycles used to seem like a reasonably doable number. 

Three doesn't seem very doable now. Hopefully, that will change before next Wednesday.

Wednesday, November 5, 2014

The Cycle 8 Chemotherapy Liveblog

Today's liveblog will start later than usual as I couldn't get an early appointment with an oncologist. Usually, it's blood draw at 8:00, oncologist at 9:something, and chemo starts before 10:00. Today it will be blood draw at 10:30, oncologist at 11:something, and, if I'm lucky (weird word in this context), chemo will start before noon. 

Which sadly means I won't be pulling the pump on Friday until late in the afternoon. And while it might've meant I could sleep in this morning, the anticipatory side effects are bad enough that I just got up at the usual time. 

All in all, bad luck on the late start. 

So now it's 8:45 and I have about two hours to kill before I have to be at Group Health. At least the late start opens up breakfast options beyond VPC or IHOP. 

As Arnold Schwarzenegger says in nearly every movie he makes, I'll be back...

10:33 am
I'm back. I've been to the infusion center, had the line inserted, blood drawn, and now am waiting for my appointment with the oncologist, scheduled for an hour from now. (Someone here should really work on eliminating the wait times between the phases of a chemo cycle. As a patient, I spend too much time waiting.) It was interesting seeing the infusion center at 10:15 versus 8:15. They get a lot busier as the day goes on. So much so that I fear I may not get my typical semi-private cubicle when it comes time to start chemo. 

10:51 am
It appears the chemotherapy weight loss program has started to kick in. I'm down 10 pounds over last time (214). Pretty sweet. Now if only there were a chemotherapy muscle-building program to go with it. Oh well. Skinny and mushy is still better than fat and mushy.

11:16 am
Apparently we're still waiting on the lab results before I'm cleared for chemo. Saw the oncologist without the lab results, and she's cleared me to proceed contingent on the lab work. So we wait for the lab work.

12:18 pm
Still waiting for the drugs to appear, though the labs are done. This time I won't be getting Avastin, since one of the tests showed I have too much protein in my urine. Not sure why that's a problem, but the medical providers think it is and I'll just defer to their judgement. They also told me to drink more water, but that may be more difficult as I'm not a fan of water and particularly not lukewarm water.

12:33 pm
Drugs are here, less Avastin. So we're off to the races.

12:56 pm
I'm tired and have a headache. 

2:24 pm
I'm still tired, and still have a headache. But the infusion is almost done, and then it'll be the pump hook-up and I'll be done. So unless something striking happens in the next fifteen or twenty minutes, this is probably it for the liveblog. 

But who knows? Maybe the line will come out and we'll have an orange alert or something. 

Though probably not...

Tuesday, November 4, 2014

How Can This Be a Thing?

I know I'm repeating myself, but anticipatory side effects. How can this be a thing?

Tomorrow is Cycle 8, and I can totally understand feeling crappy tomorrow. But why on earth am I feeling crappy today? So crappy, in fact, that I had to leave work at noon to come home and sleep for five hours. How is this a thing?

What could possibly prompt your body (or worthless mind) to decide that since I'm going to feel bad tomorrow, I may as well get a head start and just start feeling lousy today. What the hell? There are enough bad days with chemo, when you're actually on chemo, why do you need to feel lousy on the days that you're as far from chemo as you can get?

Stooopid. And annoying. I've got better things to do with my time than feel horrible for no reason. 

But here I am, feeling horrible for no reason. Yay!

Monday, November 3, 2014

May She Rest In Peace

If you're at all engaged in popular culture, you've probably heard about Brittany Maynard, the 29-year-old woman who was diagnosed with some horrible form of terminal cancer and so moved with her husband to Oregon so she could legally take advantage of Oregon's assisted suicide laws and end her life on her own terms.  

Apparently she died on Saturday. 

And all I can say is, rest in peace. Twenty-nine is way too young to be handed a cancerous death sentence, and who am I to question the choices someone in that position makes -- whether it's to sign up for any and all treatments available, sit back and wait for the cancer to do its thing, or head to Oregon and cut it off at pass. They're all equally terrible options which no 29-year-old should have to choose between.

And as someone facing their own terminal cancer diagnosis, if certainly less urgent than Ms. Maynard's, I'm impressed by her ability to face the fact that she was going to die, and actively and engagingly respond to it. Based on my own experience, and what I've heard and read about, this seems a fairly rare trait. We all know we're going to die, but few seem to want to accept that fact, even when all the evidence suggests that it's going to happen fairly soon.* 

So, here's to Brittany Maynard and her family and friends. I hope her decision gave them all more peace than any of the other available options might have done.

* Personally, I'd be willing to be bet that the thought going through the minds of most people facing a firing squad is not "I'm about to die" but "maybe all their guns will jam."

Beer Mitten...with Shark

At risk of turning my cancer blog into an alcohol blog, I just wanted to share this very cool beer mitten I got from a friend at work. I'm sure it's designed to keep the beer inside cold, but it also works very well to keep the fingers on the outside warm -- or at least warm enough not to have the neuropathy kick it. 

And it's got a shark going through a tube on it. I'm not sure why it has a tube-traversing shark -- I don't typically associate beer with sharks -- but the shark seem does seem cheery and festive, so what the heck. 

So woohoo! for the beer mitten, and here's to the Pacifico inside it. Pacifico was my Mum's brand, so whenever I drink it I think of her. And while part of me is very glad she's not around to worry about the current state of my life, another part really wishes she were here. She'd no doubt have useful commentary on all of this crap.