Daily Archives: February 2, 2015

The John Report, updated

January was a rough month for John, as he reports below. Nonetheless, his spirits are good, and he keeps on trucking. I’m awfully glad Mr. Butler made that interception in the last seconds of last night’s game, though: if not quite a Lazarus effect, it brought John out of his chair in jubilant exultation. I tend to dismiss “mere” sporting events as pretty irrelevant but in fact, they can literally give people something to cheer about and for that, I’m grateful.

Here’s his most recent update, circa 24 hours ago:

The Grand Adventure Part IX: Snowed in!

My friends! January has been long.

Some of you have been privy to my struggle with long term Mystery Pain™ stretching back to last summer. At first I thought it was just pulled stitches left over from surgery. Later I guessed I had given myself a hernia. Then I wondered if I had somehow pulled the muscles of my intestines. Finally, the pain was so fierce that I figured it had to be kidney stones. Had to be something, right? We put the last of my chemo treatments on hold so that I could drink radioactive kool-aid and get blasted by magnets. The scan revealed two things, first being that chemo wasn’t doing me a lick of good. None at all. Second, Mystery Pain™ was most obviously originating from two humongous blood clots that had formed on the sides of each kidney, left-over party favors from both surgery and chemo. Hmmm boy do they have my attention. Walking is a task. Lifting heavy objects is out. It pretty much hurts to exist, which is exhausting, because I like existing. Sometimes after a doctor’s visit they’ll give you a choice of lollipops or some such candy. In my case I got a three month’s supply of scary ass needles to slap into my own stomach twice daily all in the name of thinning my blood. January has been long.

So chemo is out. I’m actually pretty grateful for that, actually, and in many regards, pain be damned, I actually feel a lot better. It’s left me with some pretty serious side effects, nerve damage and other such pleasantries, that may heal, may not. At the urging of my trusted nurses, I am trying a new drug called Erbitux, a targeted therapy that was designed for exactly the type of butt cancer that plagues yours truly. How lucky am I, huh? It’s not technically a chemo drug and the toxicity is low. The one side effect, I was told, would be a light rash. The rash itself would serve as indicator that the drug is working. Well, working it must be! Gracing my face is now the most obscene light rash you’ve ever witnessed. It’s absolute carnage. Holy shit I thought I had it bad in high school. My face now resembles a war zone on the volcanic surface of the planet Zits. Light rash my ass. Doctors should be required to personally sample every treatment they prescribe.

Yeah, January has been a bit of a slog. Am I trying to survive the cancer or the treatment? I sometimes feel that when cancer patients are urged to “be strong,” the real fight is against all the crap the doctors throw at you. There is no concern for the long term effects of their treatment, since to them death is already a forgone conclusion. And there doesn’t seem to be much interest in identifying the source of the disease, so long as the symptoms are contained. I won’t lie, I was a bit angry for a spell. I had made some big plans for western travel for the month of February. Mango groves in Hawaii, big mountain skiing in Alaska, swimming in Southern California and of course my second home of Colorado, all out the window so I can instead hobble around in the northeastern snow with a friggin cane. I started to get caught up in what I “should” be doing, rather than dealing with the reality at hand. I should be swimming in turquoise water. I should be chest deep in champagne powder. I should be drinking over-the-top bottles of Brunello with my crew in Telluride. I should be road tripping! Have you seen the price of gasoline?

But of course, the land of Should Be is a dangerous place to live. Desire leads to entitlement, which in turns leads to the constant gripe that things are unfair. And indeed, life seems unfair when held to the list of demands we deem so reasonable. Now with a clearer mind, I remember that I’m not driving this train. I have no hands on the wheel, and the only control I have in the matter is how I react to what falls upon me. That is what defines our character. None of us “deserve” anything, good or bad. Life tends to serve up exactly what we need, whether we recognize it or not. Hell, maybe these blood clots are somehow a boon. Maybe this is the universe’s way of telling me to sit down, stop wandering and write a damn book. It’s not bad advice.

So that’s about all I have to say about that. Sorry for falling off the radar. January has been, y’know, long. I plan on taking some down time for the Erbitux and blood thinners to do their thing. I’ll be keeping a low public profile, partly because walking is a painful chore, partly because currently my face scares children. All part of the grand adventure.

Hope you’re all warm, well fed and properly unshoveled wherever you are. Be well, my friends. Take care of those around you, even in the midst of your own struggles. Define your character. We’re all going through something, and no one gets through it alone.

I love you all. Live big. Go Patriots.
jf

People are always (kindly) asking how my brother is doing.  We are, as John says, "eternally grateful" for the support.  Here's his most recent update, circa 24 hours ago: </p><br />
<p>The Grand Adventure Part IX: Snowed in!</p><br />
<p>My friends! January has been long.</p><br />
<p>Some of you have been privy to my struggle with long term Mystery Pain™ stretching back to last summer. At first I thought it was just pulled stitches left over from surgery. Later I guessed I had given myself a hernia. Then I wondered if I had somehow pulled the muscles of my intestines. Finally, the pain was so fierce that I figured it had to be kidney stones. Had to be something, right? We put the last of my chemo treatments on hold so that I could drink radioactive kool-aid and get blasted by magnets. The scan revealed two things, first being that chemo wasn’t doing me a lick of good. None at all. Second, Mystery Pain™ was most obviously originating from two humongous blood clots that had formed on the sides of each kidney, left-over party favors from both surgery and chemo. Hmmm boy do they have my attention. Walking is a task. Lifting heavy objects is out. It pretty much hurts to exist, which is exhausting, because I like existing. Sometimes after a doctor’s visit they’ll give you a choice of lollipops or some such candy. In my case I got a three month’s supply of scary ass needles to slap into my own stomach twice daily all in the name of thinning my blood. January has been long.</p><br />
<p>So chemo is out. I’m actually pretty grateful for that, actually, and in many regards, pain be damned, I actually feel a lot better. It’s left me with some pretty serious side effects, nerve damage and other such pleasantries, that may heal, may not. At the urging of my trusted nurses, I am trying a new drug called Erbitux, a targeted therapy that was designed for exactly the type of butt cancer that plagues yours truly. How lucky am I, huh? It’s not technically a chemo drug and the toxicity is low. The one side effect, I was told, would be a light rash. The rash itself would serve as indicator that the drug is working. Well, working it must be! Gracing my face is now the most obscene light rash you’ve ever witnessed. It’s absolute carnage. Holy shit I thought I had it bad in high school. My face now resembles a war zone on the volcanic surface of the planet Zits. Light rash my ass. Doctors should be required to personally sample every treatment they prescribe.</p><br />
<p>Yeah, January has been a bit of a slog. Am I trying to survive the cancer or the treatment? I sometimes feel that when cancer patients are urged to “be strong,” the real fight is against all the crap the doctors throw at you. There is no concern for the long term effects of their treatment, since to them death is already a forgone conclusion. And there doesn’t seem to be much interest in identifying the source of the disease, so long as the symptoms are contained. I won’t lie, I was a bit angry for a spell. I had made some big plans for western travel for the month of February. Mango groves in Hawaii, big mountain skiing in Alaska, swimming in Southern California and of course my second home of Colorado, all out the window so I can instead hobble around in the northeastern snow with a friggin cane. I started to get caught up in what I “should” be doing, rather than dealing with the reality at hand. I should be swimming in turquoise water. I should be chest deep in champagne powder. I should be drinking over-the-top bottles of Brunello with my crew in Telluride. I should be road tripping! Have you seen the price of gasoline?</p><br />
<p>But of course, the land of Should Be is a dangerous place to live. Desire leads to entitlement, which in turns leads to the constant gripe that things are unfair. And indeed, life seems unfair when held to the list of demands we deem so reasonable. Now with a clearer mind, I remember that I’m not driving this train. I have no hands on the wheel, and the only control I have in the matter is how I react to what falls upon me. That is what defines our character. None of us “deserve” anything, good or bad. Life tends to serve up exactly what we need, whether we recognize it or not. Hell, maybe these blood clots are somehow a boon. Maybe this is the universe’s way of telling me to sit down, stop wandering and write a damn book. It’s not bad advice.</p><br />
<p>So that’s about all I have to say about that. Sorry for falling off the radar. January has been, y’know, long. I plan on taking some down time for the Erbitux and blood thinners to do their thing. I’ll be keeping a low public profile, partly because walking is a painful chore, partly because currently my face scares children. All part of the grand adventure.</p><br />
<p>Hope you’re all warm, well fed and properly unshoveled wherever you are. Be well, my friends. Take care of those around you, even in the midst of your own struggles. Define your character. We’re all going through something, and no one gets through it alone.</p><br />
<p>I love you all. Live big. Go Patriots.<br /><br />
jf

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While Greenwich gets sleet, we’re doing better up here

4 degrees, 45-mph – winds, fire in the stove; all good

Snow

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Gee, the Seahawks just shoved and pushed the winners a bit

Miss Amazon loser rips crown off rival’s head and tosses it to the ground.

Great Super Bowl, however.  I drove my kids to distraction by switching sides each time the Seahawks or the Patriots made a game-turning play, but eventually the right team won, so far as John and Sarah were concerned.

I’m up in Maine with them, where it’s howling like crazy as another blizzard hits. Fun stuff, for a visitor.

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