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

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

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

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

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

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

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

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

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

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

So Ends the Cancer Vacation

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

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

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

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.

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?

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. 

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!)

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. 

T.M.I.

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.

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."