Here's the Story
I had Hodgkins Lymphoma back in 2013–2104, and I wrote a blog about it. It’s all here for you.
Take a Bow
I think the mailman in our neighborhood was furloughed. I'm not sure- we're still getting a modest amount of mail, but the overall volume to our house, our neighborhood, and to all of Middle Tennessee is way down. It seems to have coincided with then end of my Hodgkins treatment. It's fine- he could use a break.
Thank you to everyone who sent anything, and that's a lot of you. Thank you for the cards, the gifts, the wine, the food, the books, the coffee, cds, anti-nausea paraphernalia (gum, bracelets, etc.), and the housecleanings. Thank you for the phone calls, too, and emails. I can't name everyone here, but thank you all. You know who you are.
Thank you to Diane for the cards. I know a lot of you sent cards and letters, so why does Diane get mentioned by name? Because she sent cards every day, more or less. Probably almost 100. Several cards on some days, with messages ranging from "Hi Pete!" to obscure hummingbird facts. Some days I would get three or four from her- it was so regular that at one point she turned it into a semi-scientific study of the USPS's delivery times ("text "Card # 3" to me when you get this!"). The conclusion was that they are inconsistent. Is that because they are hemorrhaging money, or are they hemorrhaging money because they are inconsistent? That must be it. I'm sure that if they were more reliable- and if the entire world forgot that email and texting existed- they'd be flush in no time.
They whole thing must have cost her over $100, to say nothing of the time it took. And it would have cost her more if she did not have a ready stamp supplier close by (thank you, Dad). Thanks, Diane. I love you.
Thank you to everyone who came out to visit and help. George and Kathy, Bo, Mom and Dad. Andy. Scott U. Thank you to everyone here in Nashville as well. All my neighbors, as well as Liane and Lee, Sam, and Joel.
Thank you to everyone who brought and sent me natural medicines. Names redacted.
Thank you to my work for working with me.
Thanks again, George and Kathy, for the use of the car. I did not think it was necessary at the time, but it made life much easier; it turns out that you did know better than me on that one. This does not mean, however, that you need to buy me a lawnmower.
Most of all, I want to thank my wonderful wife. Some things- referees, traffic signals- tend to go under-noticed when they are doing what they are supposed to do, and doing it well. And during this time, I always had what I needed, and I'm not just talking about rides to the pharmacy and Campbell's soup here. I'm talking about support: real, barely-flinching emotional support. I don't say unflinching, because I don't want to idealize this whole situation and imply that Caitlyn did not have her moments when she wanted to kill, gag, or divorce me- or do all three, in that order. She may have, but that's something for her group at Gilda's Club to hear about, not me.
"It may be just as difficult for your wife having to go through it with you. Be aware of this." This is a direct quote from an email from a friend who went through chemotherapy a few years before I was diagnosed. I read this right around Thanksgiving, and I took it to heart, though I realize now that I was paying it some kind of lip service . But how could I have known what we were in for?
Everyone asked me how I was doing. Everyone asked Caitlyn how I was doing. But we were in the same boat, navigating the same choppy waters. Yes, I was the one who felt shitty. But if I felt terrible, I knew it. If I felt good, I knew it. Caitlyn had to operate by emotional dead reckoning, trying to gauge my entire state just by the clues I gave. It was unsteady from day to day, and she kept as level and positive as anyone could. She was strong and sweet and stern, and it was what I needed. I said a lot at our wedding about how lucky I felt to have her, and I meant it- but back then I didn't even know the half of it.
So thank you, Caitlyn, for loving me and standing by me and not cracking up. I love you.
And thank you to Gilda's Club Nashville for supporting my wife as well as she has supported me.
Now let me tell you a little story. Just after the wedding last year, I received an anonymous package. It was a dvd of Plan 9 from Outer Space- Ed Wood's piece de resistance and the worst movie ever made. It was cool, and I called Kris Farris to thank him. But he didn't send it. I went down the list of suspects, and everyone I could think of who would know that I would want a Plan 9 dvd (it was like a three-person list) denied it. It was a mystery.
Not long after I was diagnosed, I got a message from Dave Liniak. He told me he had sent me something, and I would know it when I got it. I kept an eye on the mail, and in came a package. Anonymous again, but I figured it was from Dave. It was a kazoo. Now, I am all for lighthearted and whimsical gifts, but this one hit me all wrong. I was just diagnosed with cancer, and you send me a kazoo?! I knew that he meant well, but that gift did not lighten my mood at the time. I thought it was kind of shitty. I said nothing.
Anyway, a few days later, the new Mother Hips cd appeared in my mailbox. Now that was a gift with Dave written all over it. I thanked him. But who sent the kazoo? And who sent Plan 9?
I assumed they came from the same person, as those gifts seem to be in the same goofy genre. Occam's Razor dictated that the two funny gifts were from the same person, though Plan 9 came from Amazon and the kazoo did not. Caitlyn thought they came from different people, but come on- I mean, what were they chances that these two kitschy gifts were sent by two different people? My explanation made much more sense.
Until I got a call from my buddy Steve Archer in Independence, CA. We had a long conversation, and I explained my illness to him. I remember it well- I was finishing a walk with Lea as the chilly fall day got dark, and as I stepped up on our porch at the end of the walk, Steve and I started in on the pleasantries that wrap up a conversation. But before we hung up, he asked me, "Hey, did you ever get a dvd of Plan 9 from Outer Space?"
I said "Yes! That was you?!" Apparently I had mentioned the fact that Caitlyn had never seen Plan 9 when we were in Independence in 2012. Steve remembered this, and he thought it would make a good wedding gift. Man, you gotta love getting the plates and coffee grinders- all that stuff from the registry. But you really gotta love those who go rogue. Mystery solved- at least one half of it. Caitlyn was right: there was another anonymous gifter.
A couple more gifts showed up. And more, as my treatment went on: a miniature globe, hand-carved pencils, a glowing alien figurine, and an awesome book- R. Crumb's Heroes of Blues, Jazz, and Country. Wooden spoons with drumsticks for handles and a treble-clef-shaped slot in one. Zebra-stripe playing cards, and a first-rate crazy straw (with "eyeglasses" attachment). A Beatles book. Moleskine notebooks. Colored sharpies. Oh, and colorful duct tape.
As you can see, the gifts share a strain of whimsy. They are mood-lightening novelties, and they all came with my name and address computer-printed and affixed to a padded manila envelope. They came like clockwork, there was no return address, but they were all stamped from one of those automated machines in 37206- East Nashville.
We had little to go on. We racked our brains trying to figure out who was sending this stuff. We have a handful of friends in East Nashville, but they all denied involvement. We widened our net and considered all of our Nashville friends suspects; they could have driven across the river to cover their tracks. Yes, that would have been a very convoluted plan, but it was one that I refused to put past several of our friends- especially Sam Wooden, who could have easily dashed from downtown to Five Points every couple of weeks to fulfill his devious plot. I could even picture him doing it. But when I accused him, he responded with a bemused and (seemingly) sincere I-wish-I-had-thought-of-that look.
We figured the sender had to be someone who had been in our home long enough to notice the R. Crumb print that hangs above our living room mantle. The items don't seem to have been selected based on my personal tastes- I use Field Notes notebooks, not Moleskine- but the Crumb book seems too right-on to be a coincidence. Inside job, maybe? We have suspected (and accused, many times) Elaine. Ditto Liane and Lee, and Joel. Habib and Beth. I have suspected my own wife. We have suspected out of town friends and family- maybe they have friends in E. Nashville that could have mailed the gifts. But that would involve local friends of friends that we've never ever heard of- not likely. Plus, the more byzantine we make the plan the less likely it seems.
The gifts stopped coming right when chemo ended. They entertained us, they made us think, and although they (probably- we have no fucking clue!) were sent by one person, they were consistent reminders that we were on many peoples' minds.
We have done our level best to figure out who the Mystery Gift Giver is. I hope the MGG does not think us ingrates because we have not thanked him or her. We would if we knew who you were. We will when we do.
Your gifts and thoughtfulness have been appreciated for months now. Please, step forward and take a bow.
Thank you to everyone who sent anything, and that's a lot of you. Thank you for the cards, the gifts, the wine, the food, the books, the coffee, cds, anti-nausea paraphernalia (gum, bracelets, etc.), and the housecleanings. Thank you for the phone calls, too, and emails. I can't name everyone here, but thank you all. You know who you are.
Thank you to Diane for the cards. I know a lot of you sent cards and letters, so why does Diane get mentioned by name? Because she sent cards every day, more or less. Probably almost 100. Several cards on some days, with messages ranging from "Hi Pete!" to obscure hummingbird facts. Some days I would get three or four from her- it was so regular that at one point she turned it into a semi-scientific study of the USPS's delivery times ("text "Card # 3" to me when you get this!"). The conclusion was that they are inconsistent. Is that because they are hemorrhaging money, or are they hemorrhaging money because they are inconsistent? That must be it. I'm sure that if they were more reliable- and if the entire world forgot that email and texting existed- they'd be flush in no time.
They whole thing must have cost her over $100, to say nothing of the time it took. And it would have cost her more if she did not have a ready stamp supplier close by (thank you, Dad). Thanks, Diane. I love you.
Thank you to everyone who came out to visit and help. George and Kathy, Bo, Mom and Dad. Andy. Scott U. Thank you to everyone here in Nashville as well. All my neighbors, as well as Liane and Lee, Sam, and Joel.
Thank you to everyone who brought and sent me natural medicines. Names redacted.
Thank you to my work for working with me.
Thanks again, George and Kathy, for the use of the car. I did not think it was necessary at the time, but it made life much easier; it turns out that you did know better than me on that one. This does not mean, however, that you need to buy me a lawnmower.
Most of all, I want to thank my wonderful wife. Some things- referees, traffic signals- tend to go under-noticed when they are doing what they are supposed to do, and doing it well. And during this time, I always had what I needed, and I'm not just talking about rides to the pharmacy and Campbell's soup here. I'm talking about support: real, barely-flinching emotional support. I don't say unflinching, because I don't want to idealize this whole situation and imply that Caitlyn did not have her moments when she wanted to kill, gag, or divorce me- or do all three, in that order. She may have, but that's something for her group at Gilda's Club to hear about, not me.
"It may be just as difficult for your wife having to go through it with you. Be aware of this." This is a direct quote from an email from a friend who went through chemotherapy a few years before I was diagnosed. I read this right around Thanksgiving, and I took it to heart, though I realize now that I was paying it some kind of lip service . But how could I have known what we were in for?
Everyone asked me how I was doing. Everyone asked Caitlyn how I was doing. But we were in the same boat, navigating the same choppy waters. Yes, I was the one who felt shitty. But if I felt terrible, I knew it. If I felt good, I knew it. Caitlyn had to operate by emotional dead reckoning, trying to gauge my entire state just by the clues I gave. It was unsteady from day to day, and she kept as level and positive as anyone could. She was strong and sweet and stern, and it was what I needed. I said a lot at our wedding about how lucky I felt to have her, and I meant it- but back then I didn't even know the half of it.
So thank you, Caitlyn, for loving me and standing by me and not cracking up. I love you.
And thank you to Gilda's Club Nashville for supporting my wife as well as she has supported me.
Now let me tell you a little story. Just after the wedding last year, I received an anonymous package. It was a dvd of Plan 9 from Outer Space- Ed Wood's piece de resistance and the worst movie ever made. It was cool, and I called Kris Farris to thank him. But he didn't send it. I went down the list of suspects, and everyone I could think of who would know that I would want a Plan 9 dvd (it was like a three-person list) denied it. It was a mystery.
Not long after I was diagnosed, I got a message from Dave Liniak. He told me he had sent me something, and I would know it when I got it. I kept an eye on the mail, and in came a package. Anonymous again, but I figured it was from Dave. It was a kazoo. Now, I am all for lighthearted and whimsical gifts, but this one hit me all wrong. I was just diagnosed with cancer, and you send me a kazoo?! I knew that he meant well, but that gift did not lighten my mood at the time. I thought it was kind of shitty. I said nothing.
Anyway, a few days later, the new Mother Hips cd appeared in my mailbox. Now that was a gift with Dave written all over it. I thanked him. But who sent the kazoo? And who sent Plan 9?
I assumed they came from the same person, as those gifts seem to be in the same goofy genre. Occam's Razor dictated that the two funny gifts were from the same person, though Plan 9 came from Amazon and the kazoo did not. Caitlyn thought they came from different people, but come on- I mean, what were they chances that these two kitschy gifts were sent by two different people? My explanation made much more sense.
Until I got a call from my buddy Steve Archer in Independence, CA. We had a long conversation, and I explained my illness to him. I remember it well- I was finishing a walk with Lea as the chilly fall day got dark, and as I stepped up on our porch at the end of the walk, Steve and I started in on the pleasantries that wrap up a conversation. But before we hung up, he asked me, "Hey, did you ever get a dvd of Plan 9 from Outer Space?"
I said "Yes! That was you?!" Apparently I had mentioned the fact that Caitlyn had never seen Plan 9 when we were in Independence in 2012. Steve remembered this, and he thought it would make a good wedding gift. Man, you gotta love getting the plates and coffee grinders- all that stuff from the registry. But you really gotta love those who go rogue. Mystery solved- at least one half of it. Caitlyn was right: there was another anonymous gifter.
A couple more gifts showed up. And more, as my treatment went on: a miniature globe, hand-carved pencils, a glowing alien figurine, and an awesome book- R. Crumb's Heroes of Blues, Jazz, and Country. Wooden spoons with drumsticks for handles and a treble-clef-shaped slot in one. Zebra-stripe playing cards, and a first-rate crazy straw (with "eyeglasses" attachment). A Beatles book. Moleskine notebooks. Colored sharpies. Oh, and colorful duct tape.
 |
| My haul. |
As you can see, the gifts share a strain of whimsy. They are mood-lightening novelties, and they all came with my name and address computer-printed and affixed to a padded manila envelope. They came like clockwork, there was no return address, but they were all stamped from one of those automated machines in 37206- East Nashville.
We had little to go on. We racked our brains trying to figure out who was sending this stuff. We have a handful of friends in East Nashville, but they all denied involvement. We widened our net and considered all of our Nashville friends suspects; they could have driven across the river to cover their tracks. Yes, that would have been a very convoluted plan, but it was one that I refused to put past several of our friends- especially Sam Wooden, who could have easily dashed from downtown to Five Points every couple of weeks to fulfill his devious plot. I could even picture him doing it. But when I accused him, he responded with a bemused and (seemingly) sincere I-wish-I-had-thought-of-that look.
We figured the sender had to be someone who had been in our home long enough to notice the R. Crumb print that hangs above our living room mantle. The items don't seem to have been selected based on my personal tastes- I use Field Notes notebooks, not Moleskine- but the Crumb book seems too right-on to be a coincidence. Inside job, maybe? We have suspected (and accused, many times) Elaine. Ditto Liane and Lee, and Joel. Habib and Beth. I have suspected my own wife. We have suspected out of town friends and family- maybe they have friends in E. Nashville that could have mailed the gifts. But that would involve local friends of friends that we've never ever heard of- not likely. Plus, the more byzantine we make the plan the less likely it seems.
The gifts stopped coming right when chemo ended. They entertained us, they made us think, and although they (probably- we have no fucking clue!) were sent by one person, they were consistent reminders that we were on many peoples' minds.
We have done our level best to figure out who the Mystery Gift Giver is. I hope the MGG does not think us ingrates because we have not thanked him or her. We would if we knew who you were. We will when we do.
Your gifts and thoughtfulness have been appreciated for months now. Please, step forward and take a bow.
My Summer Vacation
On my
summer vacation I slept on a two-cushion loveseat that Peter Dinklage could
have barely reclined comfortably on- my legs were necessarily akimbo and
splayed all night, but I woke up feeling fine. I slept in the spare bed of
total strangers in Blacksburg, VA, and I walked four miles to drink a beer alone,
eavesdrop on cerebral college-town dwellers, and watch a parade of drunken, wobbling
students. I attempted, and failed, at seeing a friend in Brooklyn, though I succeeded
in something I had vowed never to attempt: piloting a car in Manhattan.
I looked
out on Long Island Sound at sunset.
I travelled
by car, bike, plane, bus, and ferry. I folded a flag for the first time in years,
and I went on two twenty-mile bike rides. I paddled a kayak and sailed a
Hobie Cat and something called a Rhodes 19 (sailors will know). When I “sail,” I
pull what the captain tells me to pull, slack what she tells me to slack, and
duck when she tells me to duck. I saw an old friend and his family. I applied a
lot of sunscreen, drank a lot of beer, and went to the local wine shop probably
a half-dozen times. I drank a Swartland rose, a great white burgundy, a
Billecart-Salmon blanc de blancs grand cru, and a magnum of a fine 2010 Langhe
nebbiolo- all with eager help. I ate Lady Chatterly and Beau Soleil oysters. I heard
my sixty-nine year old mother claim she’s not a raw oyster person before admitting
she had never tried one. I also watched as she downed four in quick succession.
I read
about Bush and Cheney, about paddling to Nantucket, and about the second
amendment. I got laid. I ate an unctuous smoked pork belly with black pepper
grits, a poached egg, and pickled tangerine. I heard kids cry, and I heard them
squeal. I went to a wine bar called Mersault, where I couldn’t resist pointing
out a (glaring, to me) mistake on the list to the proprietor; my rationale was
that I would have wanted to know.
I ate the
following sandwiches: vegetable and cheese, grilled cheese, egg salad, clam “po’” boy ($19),
bay scallop roll, sardine, and smoked turkey. I also had a pickle that I
fermented myself.
I forgot to
plan for my road trip, so I listened to Cold
Roses by Ryan Adams four times all the way through. It’s still my favorite, and I am going to put it on again right now. I listened to Rush Limbaugh and Dinesh
d’Souza and some radio preacher who will, if you buy his “Visiting Israel”
dvds, show you where the Battle of Armageddon “will take place.” I also played
a lot of Mad Libs. I pissed outside.
I was given
a tutorial on Ancestry.com, and got hooked. I found out where in San Francisco
my great-great-grandfather lived after he moved from Dijon, and that he was a
vigneron and vintner.
“At fifty,
every man has the face he deserves.” George Orwell said that, but I read it in
a Paul Theroux book.
I watched
someone cut in line and didn’t say anything. I regret it a little, but I wasn’t
in the mood for it. No one died.
I shaved-
only once.
I saw
Galactic at a place called the Chicken Box.
Here’s what
I didn’t do: go to the doctor. I did not take a pill, laxative, or stool
softener. I did not get blood drawn, go to a hospital, or get irradiated.
It was a
good trip.
I Am Aglow
We have now entered, and are leaving, phase 2 of treatment. For several weeks after the end of chemotherapy, I was able to enjoy a treatmentless existence. Two weeks after my twelfth treatment, I watched Wednesday come and go and I did not have to go sit in the torture chair. Of course I was feeling good- I always started feeling better about ten days after each treatment- but now, as I passed two weeks without more chemo, I started looking around for signs of improvement that I had been denied by the unrelenting chemo schedule.
My scan after chemo was, of course, crystal clear, just like it was after only four treatments- they would have had a lot of explaining to do had I somehow gotten worse during treatment. And not long after I had passed the two-week threshold did my energy level go up, and soon I was not having to take naps in the afternoon, which is good. The bad news, though, was that my reason- my sweet, legitimate, medical reason- for going to sleep whenever I damn well pleased was now gone, and I went back to being expected to stay awake through the day like a normal, functional, productive adult. But maybe not getting enough sleep caused this whole mess! Could be, so I'll stick with the generous sleep regimen.
The week of my "exit" scan I had appointments with Dr. Morgan and Dr. Tenenholtz, who is the radiation oncologist who I met with on the chock-full day of my first chemo treatment back in December. At that time we went over some details of the radiation treatment, though we were a little dismissive of the finer points, knowing that we would not be starting for about six months. This time, however, radiation treatment was imminent, so we went over what we were going to do and what it was going to do for and to me.
I am lucky in that the targeted areas are more or less in my chest: above my stomach, but below my throat. Unlike chemo, which courses throughout your body and wreaks havoc (in my experience) on the whole damn system, radiation treatment is focused only on the areas that need to be irradiated into reluctant submission. It's like spraying Roundup on the weedy areas of your lawn instead of dusting the entire backyard with it. And the side effects of radiation seem to be heavily contingent upon which areas of your body are being treated. For example, a friend of mine who had non-Hodgkins lymphoma a few years back told me, much to my chagrin, that radiation was far worse on him than chemo was. This was extremely unwelcome information, because in the days leading up to our breakfast together I had been contemplating the upcoming end of my chemo treatment and very much looking forward to radiation being a relative breeze. He elaborated, though, explaining that much of his radiation was targeted on his jaw and face, killing his taste buds, giving him sores in his mouth, and leaving him unable to swallow anything tougher than a smushed boiled egg.
Knowing that the "involved fields" are crucial to whether radiation is torture or just a mild annoyance, the rad. onc. took pains to assure me that the areas that they would be zapping would probably not cause me much more inconvenience than a mild sunburn and maybe some hair loss in the area- no big deal, but somewhat of a bummer considering that my chest hair was just beginning to return to its sunscreen-obviating glory. After his reassurances placated Caitlyn and I, he left the room for a moment, only to return saying "Soooooooo, you did have some neck involvement, so we're gonna have to treat that area, too." We spent the next five minutes listening to him back off of his earlier reassurances, which had implied that I was one of the lucky ones that did not have to get his neck zapped. Fortunately, though, the spot on my neck that had to be irradiated was off to the side, so hopefully my discomfort would not be much worse than the sheepish doctor's as he backpedaled from his previous statements.
The doctor prescribed seventeen treatments. They would be every weekday for three weeks and a few days. I went in for the initial scans, and they proceeded to take images and draw all over me with a Sharpie- these marks would serve as their guide when it came to positioning me for the treatments. What you do is you lie on a very mobile table with your arms up out of the way, and they adjust the height and positioning of the table, and when they need you to move a little bit they "roll" you by yanking on the sheet underneath you. There are (presumably very precisely calibrated) lasers coming from the walls and the ceiling by which the therapists line you up.
The machine has a window that projects the actual photons and electrons, but the field they want to irradiate is not the same as the window, so there are tiny "fingers" that close in horizontally. Picture a Star Wars-type steel door, but instead of just two heavy slabs that slide out of the frame to join in the middle with a clank, there are maybe thirty slim little fingers that close in, slowly and precisely, from each side. That way the shape of the window can be customized, as every little finger is capable of closing just as much as the doctor, via the computer, tells it to. For example, when they were doing my neck, they squeezed the window down to about the size of a Kennedy half-dollar.
Obviously the fields they wanted to irradiate in my chest were bigger, but they do their level best to keep from frying any organs and tissues that they don't have to fry. So the window opened up quite a bit to treat my chest, but since the "fingers" in the window are only capable of creating new outer borders- and since there were spots in the middle of the field that they wanted to avoid frying- they further customized my field using lead-alloy blocks. Pay attention, because this is cool:
Imagine you want to irradiate a donut shape on a patient's chest. You tell the machine to make a big circle, and the fingers close in in compliance with your wishes. But if you did the treatment now, you'd irradiate just a big circle, since the window is not capable of closing in donut shape- it can only make the circle. So the docs go to the Physics department at Vanderbilt, which is right next door in the basement, and have the Poindexters down there make a block- basically an extremely dense chunk of lead (and other stuff) that radiation can't go through. They make it to the exact specifications of your specific donut hole, then mount it on what looks like a square of plexiglass. The plexiglass then slides over the window and clicks into place with an assuring "cuh-link!" The block blocks out the radiation, and BAM- donut-shaped Chernobyl on the patient's chest. I guess when you think about it, the whole principle is the same one behind shadow puppets. Does that help? One time I picked up my fist-sized block, and it probably weighed about twenty pounds. It's crazy. I am looking forward to seeing the bill, because I am curious about how much those babies cost, and because I know that I don't have to pay it.
At the end of yesterday's treatment, after four out of the five "zaps" had been performed, the therapists realized that my final block was missing. They looked for a while, but eventually gave up and told me that they would have to have a new one made. Shit, I thought- am I gonna have to come back next week? Nope. I got on my bike, had some coffee, had lunch with Caitlyn, and by the time I got back my new block had been fabricated, cooled, and was ready to roll. These guys are pros, especially if you ignore the fact that they just straight-up lost my original block. Yep- other than that, real pros.
This is the machine, and that's the thing you lie on. There are only three places on my that they wanted to zap, but two of them they hit from the the front and the back- thus the five zaps per treatment. How do they get it from the back? That dark grey part of the machine stays put, but the entire lighter part wheels around until the "overhang" part is now an underhang, and they get you that way too. A normal treatment takes about 12 minutes, but most of that time is taken up by patient positioning, and allowing the machine to rotate into place. As you can imagine, a (probably) million-dollar machine that rotates into position with medical-grade precision does not do so very quickly. But the whole session is like 12-minute football game: sure, it's technically "happening" for the whole time, but take away the cheerleader shots, pretzel commercials, and insufferable banter, and maybe ten percent of it is actual action. The five zaps probably take no more than two minutes.
This is the readout on the machine. I never saw it do anything other than scroll out "Varian Medical Systems," but then again I was prostrate most of the time, so I wouldn't really know. It is menacing and futuristic though, like something out of Minority Report. I was slightly disappointed, because all this time I thought it was Vartan Systems, which to me is much more frightening and evil-sounding than wussy "Varian." When I hear "Vartan Systems" in my mind's ear, it's James Earle Jones's voice saying it, and when I hear "Varian" it's Mark Zuckerberg's. The other frightening aspect of these rooms was OPE: Other People's Equipment. The walls are hung with these wire busts of other patients, which I assume are secured over the patient's face, neck, and shoulders during treatment to make sure they are in the exact same position every time. It's part A Clockwork Orange and part Friday the Thirteenth, and the dim light of the treatment rooms enhances the effect. I was a little covetous of these contraptions until I realized that the people who had them had to be irradiated in far more sensitive, and therefore painful, places than I did. I guess I can live with my measly blocks.
I've had a bunch of different therapists- one is named Thomas Kinkade. Mostly the only sounds in the room were the therapists shuffling around and the sound of the machine, but one guy, Mike, always had the soothing sounds of Motown hits playing. Two of the younger therapists, Lacey and Lisa, always had country going, and for the last few days it was Kenny Chesney: first his greatest hits and then Welcome to the Fishbowl. And though his laid-back country-beach vibe did its best to make me imagine I was on some beach somewhere, respectful silence did feel like the most appropriate soundtrack to what was going on.
After chemotherapy ended, I was dreading going back for any kind of treatment. I had had a month or so to get better, and I was getting better, so dipping my toe back into anything that could disrupt my positive trajectory was not something I was eager to do. I figured at the time that, after six months of chemo, I could get through three weeks of almost anything, but I only partially believed that; after all, I had misunderestimated chemo quite a bit, and the memory of that brutal awakening is something that will probably temper me for years to come.
When I started writing this post, I was toward the end, but still in the middle of treatment. Now, though, I am done. D.O.N.E. It's amazing how fast seventeen treatments fly by when you're knocking down five a week- the radiation regimen is much less conducive to long, pensive blog posts than the glacial chemotherapy schedule. I don't have an appointment at Vanderbilt today, or tomorrow, or all week. I have to get a little blood drawn on the 11th, but that is just to monitor my blood thinners, which I've been on since April but might just be able to kick on 7-11. But it turns out that the actual end of my treatment is a little anticlimactic- not that that really takes away from the joy of it. It's just that radiation has not been much of a burden on me, so it has been a kind of ramping down from the end of chemo, which really cramped my style. When I walked out of the infusion clinic on May 7th with my silly "I'm All Done" sticker, I cried as I walked the two blocks to lunch. And when I heard Caitlyn pull into the driveway that evening, I walked out to her on the walkway and I was in tears before we could even put our arms around each other . That was a big day, and it was like all of the pent-up misery of the six months of chemo was dropping out of me at once. This day is no less big- it may be bigger- but radiation sucked less than chemo, so the corresponding relief is just not as intense.
This is not to imply that I am in tip-top shape- I am not. There is a little lung-burn from the radiation, my neuropathy is still terrible, and I am definitely softer and weaker than I have been in a long time- but I am firmer and stronger than I was a month ago. It would be naive to expect that the damaging effects of the disease and the treatment, as well as the neglect I have put my body through would get better right away. It did take seven months to get to this point, after all.
Even though I feel like this is over, I know I am still in the middle. I just finished treatment. I doubt my immune system is near where it should be. But the story is no longer gripping- it's leveling out a bit, and I am going to have to deal with the tiny incremental improvements myself. This does not mean that I am done writing about my experience, but it does mean that I am done blogging about it for now. I started this blog to keep friends and family informed about my state. It was an entirely selfish move, as I did it to avoid having to answer frequent email, telephone, and text requests for updates. But I know I am lucky that I had enough people asking about me to make it feel like a lot of work to respond to them. So thank you for reading, and thank you for caring, and I'll talk to you soon.
PH
The doctor prescribed seventeen treatments. They would be every weekday for three weeks and a few days. I went in for the initial scans, and they proceeded to take images and draw all over me with a Sharpie- these marks would serve as their guide when it came to positioning me for the treatments. What you do is you lie on a very mobile table with your arms up out of the way, and they adjust the height and positioning of the table, and when they need you to move a little bit they "roll" you by yanking on the sheet underneath you. There are (presumably very precisely calibrated) lasers coming from the walls and the ceiling by which the therapists line you up.The machine has a window that projects the actual photons and electrons, but the field they want to irradiate is not the same as the window, so there are tiny "fingers" that close in horizontally. Picture a Star Wars-type steel door, but instead of just two heavy slabs that slide out of the frame to join in the middle with a clank, there are maybe thirty slim little fingers that close in, slowly and precisely, from each side. That way the shape of the window can be customized, as every little finger is capable of closing just as much as the doctor, via the computer, tells it to. For example, when they were doing my neck, they squeezed the window down to about the size of a Kennedy half-dollar.
Obviously the fields they wanted to irradiate in my chest were bigger, but they do their level best to keep from frying any organs and tissues that they don't have to fry. So the window opened up quite a bit to treat my chest, but since the "fingers" in the window are only capable of creating new outer borders- and since there were spots in the middle of the field that they wanted to avoid frying- they further customized my field using lead-alloy blocks. Pay attention, because this is cool:
Imagine you want to irradiate a donut shape on a patient's chest. You tell the machine to make a big circle, and the fingers close in in compliance with your wishes. But if you did the treatment now, you'd irradiate just a big circle, since the window is not capable of closing in donut shape- it can only make the circle. So the docs go to the Physics department at Vanderbilt, which is right next door in the basement, and have the Poindexters down there make a block- basically an extremely dense chunk of lead (and other stuff) that radiation can't go through. They make it to the exact specifications of your specific donut hole, then mount it on what looks like a square of plexiglass. The plexiglass then slides over the window and clicks into place with an assuring "cuh-link!" The block blocks out the radiation, and BAM- donut-shaped Chernobyl on the patient's chest. I guess when you think about it, the whole principle is the same one behind shadow puppets. Does that help? One time I picked up my fist-sized block, and it probably weighed about twenty pounds. It's crazy. I am looking forward to seeing the bill, because I am curious about how much those babies cost, and because I know that I don't have to pay it.
At the end of yesterday's treatment, after four out of the five "zaps" had been performed, the therapists realized that my final block was missing. They looked for a while, but eventually gave up and told me that they would have to have a new one made. Shit, I thought- am I gonna have to come back next week? Nope. I got on my bike, had some coffee, had lunch with Caitlyn, and by the time I got back my new block had been fabricated, cooled, and was ready to roll. These guys are pros, especially if you ignore the fact that they just straight-up lost my original block. Yep- other than that, real pros.
This is the readout on the machine. I never saw it do anything other than scroll out "Varian Medical Systems," but then again I was prostrate most of the time, so I wouldn't really know. It is menacing and futuristic though, like something out of Minority Report. I was slightly disappointed, because all this time I thought it was Vartan Systems, which to me is much more frightening and evil-sounding than wussy "Varian." When I hear "Vartan Systems" in my mind's ear, it's James Earle Jones's voice saying it, and when I hear "Varian" it's Mark Zuckerberg's. The other frightening aspect of these rooms was OPE: Other People's Equipment. The walls are hung with these wire busts of other patients, which I assume are secured over the patient's face, neck, and shoulders during treatment to make sure they are in the exact same position every time. It's part A Clockwork Orange and part Friday the Thirteenth, and the dim light of the treatment rooms enhances the effect. I was a little covetous of these contraptions until I realized that the people who had them had to be irradiated in far more sensitive, and therefore painful, places than I did. I guess I can live with my measly blocks.
I've had a bunch of different therapists- one is named Thomas Kinkade. Mostly the only sounds in the room were the therapists shuffling around and the sound of the machine, but one guy, Mike, always had the soothing sounds of Motown hits playing. Two of the younger therapists, Lacey and Lisa, always had country going, and for the last few days it was Kenny Chesney: first his greatest hits and then Welcome to the Fishbowl. And though his laid-back country-beach vibe did its best to make me imagine I was on some beach somewhere, respectful silence did feel like the most appropriate soundtrack to what was going on.
After chemotherapy ended, I was dreading going back for any kind of treatment. I had had a month or so to get better, and I was getting better, so dipping my toe back into anything that could disrupt my positive trajectory was not something I was eager to do. I figured at the time that, after six months of chemo, I could get through three weeks of almost anything, but I only partially believed that; after all, I had misunderestimated chemo quite a bit, and the memory of that brutal awakening is something that will probably temper me for years to come.
When I started writing this post, I was toward the end, but still in the middle of treatment. Now, though, I am done. D.O.N.E. It's amazing how fast seventeen treatments fly by when you're knocking down five a week- the radiation regimen is much less conducive to long, pensive blog posts than the glacial chemotherapy schedule. I don't have an appointment at Vanderbilt today, or tomorrow, or all week. I have to get a little blood drawn on the 11th, but that is just to monitor my blood thinners, which I've been on since April but might just be able to kick on 7-11. But it turns out that the actual end of my treatment is a little anticlimactic- not that that really takes away from the joy of it. It's just that radiation has not been much of a burden on me, so it has been a kind of ramping down from the end of chemo, which really cramped my style. When I walked out of the infusion clinic on May 7th with my silly "I'm All Done" sticker, I cried as I walked the two blocks to lunch. And when I heard Caitlyn pull into the driveway that evening, I walked out to her on the walkway and I was in tears before we could even put our arms around each other . That was a big day, and it was like all of the pent-up misery of the six months of chemo was dropping out of me at once. This day is no less big- it may be bigger- but radiation sucked less than chemo, so the corresponding relief is just not as intense.
This is not to imply that I am in tip-top shape- I am not. There is a little lung-burn from the radiation, my neuropathy is still terrible, and I am definitely softer and weaker than I have been in a long time- but I am firmer and stronger than I was a month ago. It would be naive to expect that the damaging effects of the disease and the treatment, as well as the neglect I have put my body through would get better right away. It did take seven months to get to this point, after all.
Even though I feel like this is over, I know I am still in the middle. I just finished treatment. I doubt my immune system is near where it should be. But the story is no longer gripping- it's leveling out a bit, and I am going to have to deal with the tiny incremental improvements myself. This does not mean that I am done writing about my experience, but it does mean that I am done blogging about it for now. I started this blog to keep friends and family informed about my state. It was an entirely selfish move, as I did it to avoid having to answer frequent email, telephone, and text requests for updates. But I know I am lucky that I had enough people asking about me to make it feel like a lot of work to respond to them. So thank you for reading, and thank you for caring, and I'll talk to you soon.
PH
When I don't have much else to do, I like to sit and fume. I like to fume over a diverse range of things, but the English language- well, not the language itself, but its abuse- is usually my go-to. I would like to share this pleasure with you.
Most of my current beefs (beeves?) are not of incorrect use, but simple overuse. It seems that social media is our cultural funnel; folks from all walks of life and wildly varied interests are all dumped into the same handful of sites, thereby causing formerly esoteric phrases to become integrated into the mainstream lexicon quickly. Once there, they go from novel to bland to self-immolatingly annoying at a heretofore inconceivably rapid pace. Technology!
To explore this phenomenon, let's compare the not-so-long-ago retail industry term "Black Friday" with the now widely known "Star Wars Day," which, in case you haven't heard, is May 4th.
"Black Friday" went from abstruse to dead horse in about a decade, though the term reportedly has been used for nearly a half-century. I remember as a kid making a special train trip to the Hillsdale Mall on the day after Thanksgiving. My family did it for years, and the mall was definitely more crowded than normal, but never did we talk of our "Black Friday" plans. And there was definitely no mention of "Doorbuster" deals- which, if you think about it, is a pretty callous term, considering that a lot of the (not necessarily undeserved) injuries suffered on Black Friday are due to shoving and crowding at the gates. I really don't think it will be long before stores say fuck it and just refer to their Black Friday opening hour as "Trample Time."
Sure, the term "Black Friday" is beyond annoying1. But at least it got annoying at a gradual pace-a quaint mosey, really- compared to "Star Wars Day," I think I heard this phrase for the first time about two years ago, and at the time I thought it was clever and cute. Now, though, thanks to our cultural VitaMix, "Happy Star Wars Day" is something the hairdos at cable news morning shows wish their viewers on 5-4. Then they gigglingly drop the punchline- "May the Fourth be with you-" doubtless delighting the six viewers that have not yet been pummeled by it.
I suppose there is one potential upside: maybe we're not just witnessing rapid ascent and circulation, but also rapid demise. Maybe these are our linguistic fruit flies; maddening, but dead and gone (but of course replaced by a new generation) before you give them another thought. If we're indeed looking at an accelerated circle of life here, it is a great mercy, considering the excruciating longevity of Austin Powers quotes. So let's hope May the Fourth, along with the following terms, are enjoying their last buzz in our ears.
Selfie
To avoid contributing to the phenomenon which at once embodies the homogeneity and narcissism of our time, I will avoid a lengthy discussion of this word. I bring it up, though, because I swear that when I first heard it not too long ago I thought "Hmm, that's a clever little term." Now, if I had a time machine, I would go back and strangle whoever who coined it.
Surreal
If you took everyone- especially professional athletes- at their word, you would think that we're living in a world of purple grass, goldenrod skies, and canine-headed eagles. We are not. Use this guide: if you wake up and walk outside to see Salvador Dali trimming your lawn with a Gila monster who's shitting out melted gold coins- go ahead and describe that as surreal. If you run into a chick you dated for three weeks back in college at Crate and Barrel, that's not surreal, nor is it crazy or hilarious or worth mentioning. It's just what happens sometimes- describe accordingly.
Meh
If you can avoid going on Yelp.com, you can avoid about 95% of the uses of this threadbare phrase. It is a verbal shrug of the shoulders; an expression of pure indifference and lack of enthusiasm. I will confess to having a huge soft spot in my heart for this word, since general consensus is that it was first used in the Hungry Hungry Homer episode of The Simpsons. Bart and Lisa, having been asked by Homer whether they want to spend the day at BlockoLand, express their ambivalence with this word. They even spell it out for Homer- "M. E. H. Meh." It was clever and original then- about fifteen years ago.
Look- I'm not saying it's not useful. It's easy to see why it's tempting. To wit:
"One word for the flaming chocolate-pretzel semifreddo with Calvados foam, ignited tableside with the pastry chef's own Zippo: meh."
or
"My review of Katy Perry's new single, new video, new album, last album, last three albums, whole body of work, love life, entire career, and whole thing is as follows: meh."
See, it's spectacularly effective in dampening any verve that comes before it. But if you use it in writing these days, you are exposing yourself as one whose writing is, well, what's the word? That's right- uninspired.
Hipster
Not everyone with a beard is a hipster. Not everyone who (shudder) tries to be cool is a hipster. Not everyone who buys used clothing is a hipster. Not everyone is a fucking hipster, period, so let's stop describing everyone as such. In fact, let's take a hard look at our own tastes and remember the Dylan Thomas quote: "An alcoholic is someone you don't like who drinks as much as you do."
Creative, as a noun:
According to the reference books I own, this is technically correct, though my dictionary lists this use as "informal." Out of curiosity, I would like to go back to older dictionaries- has this always been the case? Maybe the Oxford University Press just gave up, realizing it was losing a was of attrition? Either way, this use drives me bats, like when someone refers to married couples as "marrieds" or when some Lundbergian middle-manager "dialogues" with his "team." When I hear that "there are a lot of creatives in my building" or "I help creatives identify and live their dreams!" it makes me cringe. Maybe I'm the only one who's noticed, but hopefully now you will, and you can cringe, too!
Reach out:
Just like "dialogue" as a verb, this one has a very corporate stink on it. But it's mainstream now, and it has lost what was once unique about it. Now it is synonymous with "get in touch with," which has over-casualized it:
"I'll reach out to Willie and see whether he has time to do your lawn tomorrow."
We can just give Willie a quick call. Let's leave the reaching out to the distraught and heartbroken friends that call at 3 am. Or to the alcoholic with three sober years under his belt, who calls his sponsor knowing that she's the only thing standing between him and a double vodka rocks. I picture someone teetering on a high ledge, looking to his friend for help, when I think of this phrase. It demands a little respect and gravity, as it is tinged with urgency and even a little desperation. In short, it deserves to be much more than another way to say "email."
Literally: the give that keeps on giving
Yes, we have complained ad nauseum about the blatant misuse of the word ("The cop was literally grilling me on the side of the road."), so let's talk about its overuse.
When deployed correctly, the word clarifies a sentence by pointing out that the part that was very likely to have been interpreted as symbolic was, in fact, what really happened:
You: "Man, I walked into a shitstorm this morning at work"
Your friend: "What, someone moved your boss's Tim Tebow bobblehead again?"
Obviously your friend thinks you walked into a symbolic shitstorm- which you probably did. But consider it this way:
You: "Man, I walked into a shitstorm- literally- this morning at work."
Your friend: "Is that why you had to go to the Y and shower instead of meeting me at Five Guys?"
See? Crystal clear.
But now it's used as some kind of intensifier, when it is not needed at all. "I was literally waiting for an hour at the DMV..." Well, of course you were literally waiting for an hour- no one thought you were using "an hour" symbolically. Now, if you took a number at the DMV and it wasn't called until you'd languished in their waiting area for 52 weeks, then you might want to tell your friends that you were "literally waiting for a year-" that way they'll know why you missed all their birthdays. So next time you are telling your friend that it was hot out- literally 90 degrees- just spare her the literally. I bet she believes you already.
Yes, please.
This twee little saying is rampant on social media. Situation: your friend finds a rare video of her favorite band, in unique garb, singing a cover of her favorite song while eating her favorite dessert. So she posts a link and writes "Goo Goo Dolls in drag singing Total Eclipse of the Heart while eating Dippin' Dots? Yes, please." Also, let's stop posting photos and videos and captioning them with "This."
The overportmanteauization of everything
Portmanteau words are useful, and sometimes they are funny and useful, and sometimes they just work- even the new ones. Like frenemy. I love this word because it really nails it; after all, who doesn't have a friend that they hate? But it also works because the vowel sound in friend is the same at the vowel sound in the first syllable of enemy. Perfect!
I just read this one the other day, and it represents our love for alloyed words as well as the current state of overzealous and overshared professional parenting: mompetition. Brilliant. Here it is, deployed: Economists estimate that mompetition will push spending on child yoga pants and ukelele lessons to nearly $120 billion- in California alone.
These are two new, good ones. But before you just mash two words together, please think about it. Once my wife came into my work with a good friend of hers who is (I guess obviously) gay, and a coworker of mine asked me whether he was her gusband- gay husband. What?! You can't just stick the first letter of "gay" onto any old word and expect it to be understood! Gusband could mean "goose-husband" or gastroenterologist-husband." To all would-be word-mashers out there: do you understand why gaydar works and gusband does not? If not, please email me for further clarification.
I am reading No Place to Hide, Glenn Greenwald's book about Edward Snowden, and I came up with a new word- I thought. After consulting the omniscient internet, though, I realized that I am about as original as people who say "Vegas, bay-bee!" The word is traitriot, and it's pretty timely, here in the day of Snowden and Chelsea B. Manning. Maybe history will define them as traitors or as patriots, but until there is a general consensus on their status in this country, let us capture the controversy in one word: traitriot.
I love language, and some of this stuff really does drive me mildly- mildly- nuts. But I love this language, and I don't mean to make it seem like all I find in it is stuff to complain about- or should that be "stuff about which to complain? So, to end on a positive note, there is one trend that I really like right now, and that's when writers (bloggers, usually) put a lone exclamation point in parentheses to highlight a point which needs attention, but is not the main point of the sentence. It works like this:
Floyd Mayweather was late to dinner because he left his iPhone in one of his 200 (!) pairs of jeans.
Good, huh?
1 Black Friday is also "beyond annoying-" literally- in that it has passed though that realm and emerged, rather impressively, as a pithy phrase representing the very worst of our nation. That, if you think about it, is a pretty impressive second act.
I think it's pretty cool when people say "I never thought I'd live this long..."- and actually mean it. Me, I always thought I would live this long, and then some. I just don't do the things that the people that don't think they're gonna live very long do- not very much, anyway. Not enough to have a serious impact on my life expectancy. I drink, but my alcohol intake is well within the decidedly uncool, physician-recommended range, which actually increases your life expectancy. If anything takes the coolness out of drinking, it is doing it that way.
None of the choices I have made in my life, with regards to health and fitness and diet and temperance, have had anything to do with how long I want to live. They have, however, had to do with how I want to live while I am still alive- big difference there. If I wanted to be thin, let's say, because I thought it would lead to me leading a longer life, that would be one thing. But the reason I have wanted to be healthy is just so, while I am here, my life is a little bit happier. If you told me I was going to drop dead on my seventieth birthday no matter what I do, I would not immediately adopt a pork belly-centric diet. I might indulge a little more, knowing that my serum cholesterol and other such slow killers might not have much of an effect on me, mortality-wise. But I would still do my best to be healthy, knowing that it would probably lead to a better final ten years- leading up to the date of my demise, July 5, 2047.
I guess I never gave it that much thought, but I have always assumed I would live to be an old man. I have this scenario in my head where I, in an old-folks' home, instruct one of my grandchildren to sneak in a fifty year-old bottle of wine from my cellar. Maybe we slip it past the nurse, or maybe we bribe her with a healthy glass, but either way, my grown grandchild and I enjoy a mind-blowing glass of wine on one of my last days on earth. Hopefully the wine is still good, my taste buds still work, and my grandkid does not suffocate me with a pillow just to score what remains of my cellar.
This issue of life expectancy, and our expectation for life after work, should probably factor heavily into how we live now, especially regarding how much money we have to put away so we can actually eat and live in our retirement like we eat and live now. I mean, if we retire at 65 and live until the age of 95, that's a long damn time, which in turn will require a lot of dough, depending on where you want to play shuffleboard, how nubile you like your nurses, and how many cable news stations you want to be able to yell at.
I know that I am not going to die from lymphoma- or if I do, it will be a huge surprise. I regard it as one big inconvenience, but one that I will recover from and go on to pretty much live the way I was planning on living it before: same job, same goals, same family, same hobbies. They don't like to talk about "cure rates" very much, but about 90% of Hodgkins patients survive more than five years, and the disease is considered "cured" then, so there you go.
But there is one difference that has now dawned on me: I may not live nearly as long as I thought I was going to.
Please bear in mind that there is no scientific evidence that I have found that supports this hunch. It is just a gut feeling. But this disease and my reaction to it has made it glaringly obvious that I am not especially healthy and/or strong. It all started with the backhanded compliment the pulmonologist paid me when he met me for the first time- after he'd seen the scan of my chest. It was the medical equivalent of "you're a lot smarter than you look." His candid comment? "Well, you look a lot better than your lungs do."
What? Moi? I had never been told anything like that in my life. Doctors always told me yeah yeah, keep exercising, don't drink too much, use condoms, see you next year. And I liked it like that. I felt healthy, and like I had this whole living thing figured out.
But now I'm not so sure. Like I said before, I am not going to die from lymphoma, and barring some accident I probably won't die for decades and decades. But it has dawned on me that I am not invincible, and I get the feeling that my body might wear out sooner than I always thought it would, which raises a lot of questions.
It's true that none of of knows when we are going to go- it's just a gamble, and we hope for the best. But now that I am questioning my previous assumptions about how long I am going to be around, I realize how much our expectations for the future affect what we do today. Right now.
Just one little example: let's say I think I am going to live until age 90, and I want to retire at age 65- that means I need to have twenty-five years of savings ready to go to support me in my old age. And not only support the lifestyle I currently have, but probably support a lifestyle of medications, nurses, and convalescence (if you want to call that a "lifestyle"). So even if I have a million bucks, that won't afford me much of a luxurious retirement.
But maybe I'm gonna die at 65. Then I obviously won't need a million bucks at 65- I'll just need a box or hefty urn. But if I'm gonna die at 65, do I really want to be working until then? Maybe I'd rather retire at 50 or 55 with less money, considering that I'll only have about ten years to spend and enjoy it.
When I worked at the San Francisco Saloon in Los Angeles, one of our most colorful regulars was a character named Ralph Casillas. He was a round, bald, liberal native east-Angeleno who delighted in discussing news, politics, grammar, as well as prodding our very conservative manager into ideological battles- all the while being lubricated by his favorite poisons: Stoli rocks when it was warm out, and Tullamore Dew, neat, in the fall and winter (keep in mind this was LA, where the winter weather rarely really called for whiskey neat- it was just Ralph's thing). Ralph took perverse pride in his status as a working stiff. He was a lifer at Verizon, which was still GTE when he started there decades ago. He had a favorite line, which he pulled out whenever he was standing at the bar and being treated to some highly-entertaining drama, usually between two waitresses. He'd hold his glass up to me, and with a bemused smile he'd say "you know, I've got booze at home," his point being that he could easily get drunk at his own house, but it's the unique saloon entertainment that keeps him coming back.
Ralph and his wife Sandy would dine and drink, and take interesting trips now and then, but it was no secret that Ralph was X-ing out the days until his retirement; he'd always talk about going to Spain, lounging around, reading, and basically doing all the things that we look forward to doing when we retire. He was so enthusiastic about it that I think I looked forward to his retirement as much as he did.
I think you may know where this is going. Ralph retired, and it was not long after that that I got the call: Ralph was dead at 59. I was sad for his wife, but also sad for all the things that he looked forward to doing and would never be able to do; all the experiences he had saved up for retirement that would now go unfulfilled.
But it's just a gamble, right? If we spend all of our money during our working days, doing the things we don't want to put off until retirement, then we might be stuck with no money, relying on social security and living out our golden years fretting about whether our monthly check will cover our overhead. And if we delay all of our pleasures and squirrel away every dime we can for retirement, we doom ourselves to an austere existence during our working years, which may very well turn out to be worth it- if we make it to retirement and beyond (which is likely, but still a pretty significant "if").
So obviously there is a balance to be struck there, with regard to the hard practicalities of saving for retirement vs. spending it all right now. I mean, you don't want to be destitute in your older years, but you don't want to forgo all your earthly pleasures until then.
But what of the other things that we want to do in our later years? The businesses we want to start, the books we want to write, the time we want to donate. Can we really afford to put these things off, not knowing whether we will be around at all to see them through, or even to start them? I really do wonder.
I tasted wine this week with a winery owner who is 37- just one year older than me. He went to Berkeley, then got into the commercial real estate business, where he did pretty well. Right when he got out of college, one of his friends turned him on to the pleasures of wine, and his enthusiasm for it grew and grew from there. He decided that making wine was what he wanted to do- and after he retired after a long career in real estate, that is what he would do. However, his satisfaction in his chosen career was low, though he worked for a great firm. This reality made him realize that he should not just go out and look for another job; he already was in the best possible situation for someone in his field. If he was in a terrible office with a dictator boss, he figured, then maybe a change of venue would be the tonic he needed. But since his venue was rosy, he surmised that he did not belong in that field at all. So he ditched the real estate business and his winery was born.
An inspiring tale to be sure, although one wonders what kind of situation- familial, financial- allows a 24-year-old to ditch his nascent lucrative career for the wine world. At the risk of sounding like a crotchety naysayer, we can't all just run off and start our own wineries, can we?
Probably not. But we can choose how we apply ourselves to the hours when we are not slaving away at whatever toil keeps the lights on and the fridge full. We can write our books, give our time, paint our pictures, start our businesses, and do the things that we imagine ourselves doing in our blissful retirement- but we can do them now. We can do them instead of watching tv, reading celebrity gossip, and checking up on people we care nothing about on Facebook. It is too easy to be lulled in this world- lulled into easy entertainment, lulled into consuming too much, lulled into thinking we'll do what we were meant to do- but we'll just to it tomorrow. And one of the reasons we believe we will do it tomorrow is that there has always been a tomorrow there waiting for us- for every last one of us that is alive to read this right now, tomorrows have never been denied.
I know I have plenty of tomorrows ahead of me, but this illness has made me realize that every life-saving cycle of chemotherapy, dose of radiation, pill and scan, may be ticking off some of the tomorrows I have always assumed would be there for me. This is not a sad fact, but an inspiring one, as it makes me want to do, in a way that the abstract thought of a far-off death never has. I guess I always figured I would have forever to do everything I want to do, and that still is true. But only now am I realizing that forever may not be as long as I thought.
OK, enough loopy philosophy. This was a big week for me, medically, although it turned out to be a bit anticlimactic- which is good, I guess. I had a PET scan on Monday, which turned out to be squeaky-clean. No surprises there, as I have been in remission, technically, since January's scan showed the same result. So on one hand, I am cured, and that's reason to celebrate.
On the other hand, we're still going ahead with radiation treatment, which will zap all of the formerly active areas of my body, meaning my upper chest and some of my neck. There are side effects, of course- some of them long-lasting. But the doctors feel it's best to go ahead and do it instead of risking a relapse and wishing that we had. I am on board with that, though the radiation may fry a little part of my lungs- for good.
So that will begin at the start of June and last about 3 1/2 weeks. And then I'll be done- for real done.
I saw my infectious diseases doctor yesterday, re: my aspergillosis (a.k.a. Pete's Forgotten Disease). That seems to have disappeared, so I am now off of voriconazole, the pill I have been taking three of every day since early December. That's like 500 pills. I took them for so long that I forgot what the side-effects were, but hopefully now they will lift and I will be pleasantly surprised at how good I feel.
Quick apology to chemotherapy, from me. It turns out that skin sensitivity to sunlight is an effect of the voriconazole and not of any of the four chemotherapy drugs, so I was wrong to blame ABVD for my face's purplish-tan hue. It was the voriconazole. Sorry, chemo- my bad.
So now I am off of all prescription drugs, except for the blood thinner that is presumably chipping away at the blood clot in my arm. I have to take that until the start of July, and then I am done, and Walgreen's can find a new regular.
None of the choices I have made in my life, with regards to health and fitness and diet and temperance, have had anything to do with how long I want to live. They have, however, had to do with how I want to live while I am still alive- big difference there. If I wanted to be thin, let's say, because I thought it would lead to me leading a longer life, that would be one thing. But the reason I have wanted to be healthy is just so, while I am here, my life is a little bit happier. If you told me I was going to drop dead on my seventieth birthday no matter what I do, I would not immediately adopt a pork belly-centric diet. I might indulge a little more, knowing that my serum cholesterol and other such slow killers might not have much of an effect on me, mortality-wise. But I would still do my best to be healthy, knowing that it would probably lead to a better final ten years- leading up to the date of my demise, July 5, 2047.
I guess I never gave it that much thought, but I have always assumed I would live to be an old man. I have this scenario in my head where I, in an old-folks' home, instruct one of my grandchildren to sneak in a fifty year-old bottle of wine from my cellar. Maybe we slip it past the nurse, or maybe we bribe her with a healthy glass, but either way, my grown grandchild and I enjoy a mind-blowing glass of wine on one of my last days on earth. Hopefully the wine is still good, my taste buds still work, and my grandkid does not suffocate me with a pillow just to score what remains of my cellar.
This issue of life expectancy, and our expectation for life after work, should probably factor heavily into how we live now, especially regarding how much money we have to put away so we can actually eat and live in our retirement like we eat and live now. I mean, if we retire at 65 and live until the age of 95, that's a long damn time, which in turn will require a lot of dough, depending on where you want to play shuffleboard, how nubile you like your nurses, and how many cable news stations you want to be able to yell at.
I know that I am not going to die from lymphoma- or if I do, it will be a huge surprise. I regard it as one big inconvenience, but one that I will recover from and go on to pretty much live the way I was planning on living it before: same job, same goals, same family, same hobbies. They don't like to talk about "cure rates" very much, but about 90% of Hodgkins patients survive more than five years, and the disease is considered "cured" then, so there you go.
But there is one difference that has now dawned on me: I may not live nearly as long as I thought I was going to.
Please bear in mind that there is no scientific evidence that I have found that supports this hunch. It is just a gut feeling. But this disease and my reaction to it has made it glaringly obvious that I am not especially healthy and/or strong. It all started with the backhanded compliment the pulmonologist paid me when he met me for the first time- after he'd seen the scan of my chest. It was the medical equivalent of "you're a lot smarter than you look." His candid comment? "Well, you look a lot better than your lungs do."
What? Moi? I had never been told anything like that in my life. Doctors always told me yeah yeah, keep exercising, don't drink too much, use condoms, see you next year. And I liked it like that. I felt healthy, and like I had this whole living thing figured out.
But now I'm not so sure. Like I said before, I am not going to die from lymphoma, and barring some accident I probably won't die for decades and decades. But it has dawned on me that I am not invincible, and I get the feeling that my body might wear out sooner than I always thought it would, which raises a lot of questions.
It's true that none of of knows when we are going to go- it's just a gamble, and we hope for the best. But now that I am questioning my previous assumptions about how long I am going to be around, I realize how much our expectations for the future affect what we do today. Right now.
Just one little example: let's say I think I am going to live until age 90, and I want to retire at age 65- that means I need to have twenty-five years of savings ready to go to support me in my old age. And not only support the lifestyle I currently have, but probably support a lifestyle of medications, nurses, and convalescence (if you want to call that a "lifestyle"). So even if I have a million bucks, that won't afford me much of a luxurious retirement.
But maybe I'm gonna die at 65. Then I obviously won't need a million bucks at 65- I'll just need a box or hefty urn. But if I'm gonna die at 65, do I really want to be working until then? Maybe I'd rather retire at 50 or 55 with less money, considering that I'll only have about ten years to spend and enjoy it.
When I worked at the San Francisco Saloon in Los Angeles, one of our most colorful regulars was a character named Ralph Casillas. He was a round, bald, liberal native east-Angeleno who delighted in discussing news, politics, grammar, as well as prodding our very conservative manager into ideological battles- all the while being lubricated by his favorite poisons: Stoli rocks when it was warm out, and Tullamore Dew, neat, in the fall and winter (keep in mind this was LA, where the winter weather rarely really called for whiskey neat- it was just Ralph's thing). Ralph took perverse pride in his status as a working stiff. He was a lifer at Verizon, which was still GTE when he started there decades ago. He had a favorite line, which he pulled out whenever he was standing at the bar and being treated to some highly-entertaining drama, usually between two waitresses. He'd hold his glass up to me, and with a bemused smile he'd say "you know, I've got booze at home," his point being that he could easily get drunk at his own house, but it's the unique saloon entertainment that keeps him coming back.
Ralph and his wife Sandy would dine and drink, and take interesting trips now and then, but it was no secret that Ralph was X-ing out the days until his retirement; he'd always talk about going to Spain, lounging around, reading, and basically doing all the things that we look forward to doing when we retire. He was so enthusiastic about it that I think I looked forward to his retirement as much as he did.
I think you may know where this is going. Ralph retired, and it was not long after that that I got the call: Ralph was dead at 59. I was sad for his wife, but also sad for all the things that he looked forward to doing and would never be able to do; all the experiences he had saved up for retirement that would now go unfulfilled.
But it's just a gamble, right? If we spend all of our money during our working days, doing the things we don't want to put off until retirement, then we might be stuck with no money, relying on social security and living out our golden years fretting about whether our monthly check will cover our overhead. And if we delay all of our pleasures and squirrel away every dime we can for retirement, we doom ourselves to an austere existence during our working years, which may very well turn out to be worth it- if we make it to retirement and beyond (which is likely, but still a pretty significant "if").
So obviously there is a balance to be struck there, with regard to the hard practicalities of saving for retirement vs. spending it all right now. I mean, you don't want to be destitute in your older years, but you don't want to forgo all your earthly pleasures until then.
But what of the other things that we want to do in our later years? The businesses we want to start, the books we want to write, the time we want to donate. Can we really afford to put these things off, not knowing whether we will be around at all to see them through, or even to start them? I really do wonder.
I tasted wine this week with a winery owner who is 37- just one year older than me. He went to Berkeley, then got into the commercial real estate business, where he did pretty well. Right when he got out of college, one of his friends turned him on to the pleasures of wine, and his enthusiasm for it grew and grew from there. He decided that making wine was what he wanted to do- and after he retired after a long career in real estate, that is what he would do. However, his satisfaction in his chosen career was low, though he worked for a great firm. This reality made him realize that he should not just go out and look for another job; he already was in the best possible situation for someone in his field. If he was in a terrible office with a dictator boss, he figured, then maybe a change of venue would be the tonic he needed. But since his venue was rosy, he surmised that he did not belong in that field at all. So he ditched the real estate business and his winery was born.
An inspiring tale to be sure, although one wonders what kind of situation- familial, financial- allows a 24-year-old to ditch his nascent lucrative career for the wine world. At the risk of sounding like a crotchety naysayer, we can't all just run off and start our own wineries, can we?
Probably not. But we can choose how we apply ourselves to the hours when we are not slaving away at whatever toil keeps the lights on and the fridge full. We can write our books, give our time, paint our pictures, start our businesses, and do the things that we imagine ourselves doing in our blissful retirement- but we can do them now. We can do them instead of watching tv, reading celebrity gossip, and checking up on people we care nothing about on Facebook. It is too easy to be lulled in this world- lulled into easy entertainment, lulled into consuming too much, lulled into thinking we'll do what we were meant to do- but we'll just to it tomorrow. And one of the reasons we believe we will do it tomorrow is that there has always been a tomorrow there waiting for us- for every last one of us that is alive to read this right now, tomorrows have never been denied.
I know I have plenty of tomorrows ahead of me, but this illness has made me realize that every life-saving cycle of chemotherapy, dose of radiation, pill and scan, may be ticking off some of the tomorrows I have always assumed would be there for me. This is not a sad fact, but an inspiring one, as it makes me want to do, in a way that the abstract thought of a far-off death never has. I guess I always figured I would have forever to do everything I want to do, and that still is true. But only now am I realizing that forever may not be as long as I thought.
OK, enough loopy philosophy. This was a big week for me, medically, although it turned out to be a bit anticlimactic- which is good, I guess. I had a PET scan on Monday, which turned out to be squeaky-clean. No surprises there, as I have been in remission, technically, since January's scan showed the same result. So on one hand, I am cured, and that's reason to celebrate.
On the other hand, we're still going ahead with radiation treatment, which will zap all of the formerly active areas of my body, meaning my upper chest and some of my neck. There are side effects, of course- some of them long-lasting. But the doctors feel it's best to go ahead and do it instead of risking a relapse and wishing that we had. I am on board with that, though the radiation may fry a little part of my lungs- for good.
So that will begin at the start of June and last about 3 1/2 weeks. And then I'll be done- for real done.
I saw my infectious diseases doctor yesterday, re: my aspergillosis (a.k.a. Pete's Forgotten Disease). That seems to have disappeared, so I am now off of voriconazole, the pill I have been taking three of every day since early December. That's like 500 pills. I took them for so long that I forgot what the side-effects were, but hopefully now they will lift and I will be pleasantly surprised at how good I feel.
Quick apology to chemotherapy, from me. It turns out that skin sensitivity to sunlight is an effect of the voriconazole and not of any of the four chemotherapy drugs, so I was wrong to blame ABVD for my face's purplish-tan hue. It was the voriconazole. Sorry, chemo- my bad.
So now I am off of all prescription drugs, except for the blood thinner that is presumably chipping away at the blood clot in my arm. I have to take that until the start of July, and then I am done, and Walgreen's can find a new regular.
The last post was such a rambler, I thought I would spare you today. Just the facts, man:
Yesterday was my last chemo treatment. I will feel terrible this weekend, but when I improve, it won't be just to get poisoned again. However, radiation is coming up in a few weeks, so I'm not dancing a jig just yet. That's my known unknown, now.
PET and CT scans scheduled for Monday, May 19. Visit with Dr. Morgan as well as Dr. Tenenholtz (my radiation oncologist- you'll probably be hearing more about this guy starting soon) on Wednesday, May 22.
Man, it's a big week- I also have an appointment with Dr. Bloch, my infectious diseases doctor, on May 22. Remember the aspergillus that actually brought me into the hospital to kick this whole thing off? Well, I have been on Voriconazole this whole time, so hopefully I'm all good now and I can quit that. The scans will tell.
I also have a dentist appointment coming up in June.
Here's a hasty slideshow I put together, with Caitlyn's help and some of her photos.
PH
Yesterday was my last chemo treatment. I will feel terrible this weekend, but when I improve, it won't be just to get poisoned again. However, radiation is coming up in a few weeks, so I'm not dancing a jig just yet. That's my known unknown, now.
PET and CT scans scheduled for Monday, May 19. Visit with Dr. Morgan as well as Dr. Tenenholtz (my radiation oncologist- you'll probably be hearing more about this guy starting soon) on Wednesday, May 22.
Man, it's a big week- I also have an appointment with Dr. Bloch, my infectious diseases doctor, on May 22. Remember the aspergillus that actually brought me into the hospital to kick this whole thing off? Well, I have been on Voriconazole this whole time, so hopefully I'm all good now and I can quit that. The scans will tell.
I also have a dentist appointment coming up in June.
Here's a hasty slideshow I put together, with Caitlyn's help and some of her photos.
Back in 2007, I ran the Los Angeles Marathon. I did not win, but I am still pretty proud of it- and it may be the only one I ever run. It takes so much time and dedication, but that's not really what makes training for a marathon hard. The hardest part, I realized, is the initiative.
See, when I tell people that I played football for UCLA, they are usually impressed. When I tell them that I was a starter, they are sometimes even wowed- well, guys are. Women, by and large, including my wife, don't seem that impressed by it.
I am proud of those five years in my life, but I am just as proud- maybe prouder- of having run a marathon. Just one marathon: a few months of training, plus four hours or so of running is something I compare to five years of intense physical work, injuries, hazing, humiliation, glory. I mean, we love college football. When we were at our best, we'd have 70,000 show up when we were playing shitty teams. We were on TV. People even now- fifteen years later- remember specific things about specific games, for better or for worse- sometimes better than I do. It's incredible.
And for every win, every moment of glory, there was a month doing the work that no one celebrates very much. The practices, the weightlifting, the running, the interminable film sessions. The getting yelled at in the film room for something you already got yelled at about on the practice field, even though you had no way to change the film in the time between the original fuckup and the film session. It was tough.
But here's why it wasn't as tough as running a marathon: because I was just a part of a machine. I was told where to be, when, and what to do when I got there. Sure, I worked hard, but I was a company man. I did the right things most of the time, and the things that look like success now, followed. I became a starter, eventually. We won, eventually. And before I knew it, I was looking back on a rare experience; one that few young men get the opportunity to taste.
Now, could I have made it further in a football career? Maybe, maybe a little. I could have been more physically gifted, I could have been stronger, but what really would have made the difference? Initiative. Doing things that no one told me to do. Studying film, pushing myself even harder than the coaches, who were very well compensated, pushed us. That is the difference between me and the guys of my rough physical ability who actually had a cup of coffee, or maybe more, in the NFL. See, most of the time when I watch pro football, I look at the guys that play my former position and I feel like they were born to do it; like their DNA dictated that they become professional football players (e.g. Darnell Dockett, Ndomakong Suh). Most of the time I can't even believe that I played the same position as those guys. But every once in a while, I'll see myself out there: a barely passable physical specimen, inhabited by a guy who learned about initiative a little earlier than I did. Or maybe he had a little more than me, naturally. He won't be a Hall of Famer- he might not even be around long enough to earn the NFL pension- but his initiative has taken him to a higher "level of incompetence" than mine did.
You know who had initiative? My freshman year roommate, Cade McNown. He was gifted with toughness, but not with startling physical ability or height (he was a quarterback). He got thrown into action our freshman year, and had some good games and some terrible games. But he never stopped watching film, never stopped calling voluntary throwing sessions, and never stopped getting in the faces of guys that did not volunteer to participate. His sophomore year he was better, his junior year he was all-conference, and his senior year he was a Heisman Trophy finalist. He was the twelfth pick. overall, in the NFL draft. I truly believe that most guys with his physical abilities would have stayed- and probably been content as- mediocre college football players.
No one ever made me play football, but I was kind of funneled into it. I loved the sport already- it really is in my family's blood, and we often joke about how many damn football games my poor mom has had to sit through, with my dad being a coach and both her sons playing through college. And now my brother coaches, assisted by my dad, basically assuring my mother of a full lifetime of booster club baked potatoes, cheerleaders and trumpet players in braces, and nacho cheese. It's a good thing she loves the game.
I never played organized football until high school, but I always assumed I would be good. This was based solely- solely- on preteen cockiness, mind you. But I was pretty big, and I think by the time I got to the varsity level I had developed a little bit of actual goodness. I had good coaches that cared about what we were doing, made us do the right things, and I got pretty single-minded about it. I did what they told me to do, and then I was all-league. I kept doing what I was supposed to do, and I started getting recruiting letters. Then visits. Then a scholarship.
Same thing at UCLA: I showed up and worked, and did not quit- which was often tempting. Guys graduated, guys got hurt, and I started playing. Then I was a starter. I was a working part of the machine, solid enough that, when the machine was running as it was supposed to, the machine was pretty damn good. Did I stand out? Rarely. Rarely in a good way, and (hopefully) even more rarely in a bad way. We had our stars; the guys every team needs to do something impossible at just the right moment, the guys that break games wide open- the guys that wow. We had them in Cade and DeShaun Foster and Danny Farmer and Larry Atkins. We needed them, but we also needed guys like me.
One of the proudest moments of my whole career came during our extremely mediocre 1999 season- the last one I would ever play. From 1995 to 1998, Terry Tumey coached the defensive line at UCLA- he was the only position coach I knew in college for four years, and he believed that heavily rotating our personnel was our best strategy. It is clear to me now that the reason he believe that is because we had a very few standout performers, so the staff must have figured that hey, if everyone is just so-so, then we might as well keep them fresh. I'm sure that if we had Warren Sapp or Steve Emtman on the squad, they would have let those guys play until they were near dead. But we didn't, so a bunch of us played 25-40 snaps a game.
My senior year was different. Jethro Franklin was our coach, and if you were a starter, you were playing at least 75% of the snaps, so my playing time practically doubled. I was playing as many snaps in the first half as I had been all game the year before. He stuck with his guys, and I think I improved more in one year under him than I had over the previous several seasons. I also got more intravenous fluids during halftime that season then in all my previous seasons combined.
Like I said, my senior year was a rough one. We ended up 4-7, and were thoroughly unimpressive throughout the year. However, something clicked for me in the third- and second-to-last games of my career: an ugly loss to Arizona, and a very unlikely win against a heavily favored and theretofore Rose Bowl-bound Washington team. Against Arizona I had 13 total tackles (assisted and unassisted), and in the Washington game I had 11. These were not plays that would wow anyone, but I was in on ending about 15% of the plays their offenses ran, which was very good for a lineman. I wasn't setting the world on fire, but something had happened that put me in the right place at the right time a lot more than usual on those two Saturdays.
During one of those games, they ran a trap to my side. A trap is when they deliberately leave one of the defensive lineman unblocked and let his eagerness work against him. Here's how it works: the DL, on every snap, has been firing straight ahead into one or two 300 lb. OLs who are trying to drive him off the ball on every play. All of his strength and momentum has been going into not being driven off the ball. All of a sudden, on one play, the DL is left unblocked; his momentum carries him forward, plus he probably sees the QB or RB with the ball right in front of him. It is there for the taking and seems too good to be true- which it is, because by coming upfield you have given an OL from the opposite side a nice broad target into which he can lay his 300 lbs. But you don't see him, because you are looking upfield, salivating over the ballcarrier who is so close, yet so far away. Next thing you know you've been blindsided by the pulling OL and you're laid out flat on your back, gazing at the twilight sky and humming Summer Breeze.
The first time I got trapped was in my first game in high school, and it happened many times that game. But I thought I was doing fine because I did not know that the trap was something to worry about, I was so green. Our awful coach gave me shit about it, and I was like "I got what?" I had no idea what he was talking about- I thought I had done great (the pre-teen cockiness, again). The worst time I got trapped was my freshman year at UCLA, during a practice. I was playing end, and when the tackle in front of me blocked down I came upfield instead of squeezing down with him, like you're supposed to do. That was the last thing I remember before I heard the "oooooohs" coming from the guys on the sideline. It's kind of like they say in the poker movie Rounders: if you don't know who they're "oooooooh"ing at, it's you that got blown up. There's a silver lining, though: it was live-action He-Man and NFL Hall of Famer Jonathon Ogden that had dished out this particular humiliation, so looking back it is well worth the story.
Anyway, during one of those games during my senior year, they tried to trap me. We had studied film of their offense all week, and they had not shown any inclination toward running a trap- it didn't seem like it was in their playbook, and we had not prepared for it, but they ran the play, and left me unblocked. Instead of rushing upfield at the unattainable carrot of the ballcarrier, I squeezed down on the guard, turned and dipped my outside shoulder and blew up the trapping guard, forcing the RB to bounce outside, into the waiting arms of Robert Thomas or Tony White or one of our excellent young LBs. I did not make the tackle, and to the casual fan it probably just looked like a run for no gain. No big deal.
But when we watched the film, Coach Franklin rewound the play, paused it, and looked at me, silent. Eventually he spoke.
"How'd you know it was a trap, Pete?"
I shrugged. I don't know how I knew. Here was my coach asking me how I knew it was a trap, because it was something that he had not prepared us for in this particular game. But for that moment, 8.9 years into a 9-year career, it seems that everything I had learned in every practice and every game had come together and resulted in me doing the perfect thing at the right time, impressing and baffling the coach that, in all honesty, had probably taught me how to do it. I had such respect for him- and he made such a lasting impression on me- that I will never forget that one moment, that one play, when I impressed him.
But that was the result of showing up and working because I knew I had to- and I had someone holding me to it. The marathon was different. No one made me. No one really cared, and no one would have blamed me if, halfway through the training, I had decided that I was just too busy, or that I just didn't really want to do it. No one had any expectations about it, and I would have let down no one by calling it quits. I mean, don't we all have friends who have started training for marathons and triathlons and 1/2 marathons but, once they realize what it takes to actually do it, decide that happy hour is a much more immediately rewarding way to spend the afternoon after work?
But for some reason I stuck to it. I would measure out my runs in the car, sometimes stashing a Gatorade or Powerbar or GU behind a bush at the library so I could have some mid-run sustenance. I also ran at Santa Monica College when I didn't have the time to plan out a surface-street workout. On those tedious days I would pass my nutritional stockpile over and over and over, and I had rubber bands that I would wear on my wrists, transferring one from the left to the right every four laps- that's how I kept track of the mileage on those mind-numbing days.
I planned on a 3:42- that would be a pace of 8:30 per mile, which seemed quite attainable at the time, as I was running many, many miles in training faster than that. But I thought I was being prudent and conservative, and so 3:42 stood as my target time. I was sure I could do it.
I had friends and family in town, and they took the subway around to watch me go by at different points in the race. The first ten miles I mowed down like they were nothing. I would check my watch every time I was approaching a new mile marker, and every time, as I passed under the big inflatable archway, I had several seconds, sometimes more, to spare. I was chugging along, doing great.
I realized I was slowing down when I saw the mile 19 marker ahead and looked at my watch- I had about ten seconds to get to it, and it was at least a hundred yards away. No problem, I was only a few seconds behind. Somewhere during the next mile, however, I looked down at my watch; I should be crossing under marker 20 right now. I looked up; no marker on the horizon. I was practically crawling.
All of a sudden, I realized that those obnoxious stickers, t-shirts, etc. that say something to the effect of "The race starts at mile 20" were disturbingly, deeply true. I had heard that cliche many times before, but of course, only when you are really in the shit do cliches reveal themselves as entrenched, infallible wisdom. During my training, six miles was nothing; a jaunt, a warmup. And though six miles was no farther now, every step was agonizing, and I felt as if my hamstrings and my quads might cramp up at any moment. My biggest fear, though, was that I would be so laid up and crippled after finishing- or worse yet, not finishing- that I would be unable to get vertical for dinner that night. I had gone ahead and made a celebratory reservation at Fogo de Chao, and invited my parents and a whole bunch of my friends. I imagined them toasting me and my impressive finishing time and rising out of my chair- slowly of course- raising big glass of red wine back to them- and to myself, the conqueror.
Fogo de Chao is a Brazilian churrascaria; basically a steakhouse where, instead of taking your order, the waiters circulate carrying giant impaled hunks of meat and materialize tableside, carving knife quivering at the ready, with a look that says "what, you're gonna say no to linguica?!" It is a meal from King's Landing, regal in its excess, but hey- when is excess appropriate if not after running 26.2 miles?
At one point during that last stretch, I walked. But it felt like quitting, so I somehow started running again. By then, crossing in 3:42 was a distant dream- now we were talking pure survival. And I made it. I made it to the finish. More importantly, I made it to dinner.
I really don't have some poetic way to wrap this whole long story up. I guess I do see a lot of similarity between how I saw the marathon and how I saw chemotherapy, going in. Basically, I underestimated them both. I, in my naivete, felt like I would have some "kick" at the end of the marathon; that I would be able to find that higher gear that had always been there for me in shorter races, and I would finish strong. Same thing with chemo. During the frigid days of January, when I was just beginning to get a handle on the rhythms of my treatment, I looked forward to spring and figured I would be getting stronger and stronger, my physical condition improving with the warming weather. I figured I would be able to jump back on the treadmill of normal life right after my last treatment, and not have to turn down the speed at all. But it has been fevers, blood clots, ER visits, and crippling neuropathy over the last six weeks- hardly the kind of strong finish you picture when you start. But, through it all, I have been ticking off my last treatments- Wednesday is my final one- though the final stretch has been more of a limp than a sprint.
I don't think I will come out of this as proud as I am of the marathon; after all, there was no real initiative involved here. It has not taken any "want-to," and I have not really even had a choice. But it has taken some of what got me through the roughest of the football days as well as the marathon- just the idea that it could be much worse, and the belief that, no matter what, this will end and get better. Sure, I may not be as hale as I thought I would be at this point. But now it's not about initiative, and it sure isn't about sprinting to the finish. At this point, I've just gotta make it across. I've just gotta make it to dinner.
See, when I tell people that I played football for UCLA, they are usually impressed. When I tell them that I was a starter, they are sometimes even wowed- well, guys are. Women, by and large, including my wife, don't seem that impressed by it.
I am proud of those five years in my life, but I am just as proud- maybe prouder- of having run a marathon. Just one marathon: a few months of training, plus four hours or so of running is something I compare to five years of intense physical work, injuries, hazing, humiliation, glory. I mean, we love college football. When we were at our best, we'd have 70,000 show up when we were playing shitty teams. We were on TV. People even now- fifteen years later- remember specific things about specific games, for better or for worse- sometimes better than I do. It's incredible.
And for every win, every moment of glory, there was a month doing the work that no one celebrates very much. The practices, the weightlifting, the running, the interminable film sessions. The getting yelled at in the film room for something you already got yelled at about on the practice field, even though you had no way to change the film in the time between the original fuckup and the film session. It was tough.
But here's why it wasn't as tough as running a marathon: because I was just a part of a machine. I was told where to be, when, and what to do when I got there. Sure, I worked hard, but I was a company man. I did the right things most of the time, and the things that look like success now, followed. I became a starter, eventually. We won, eventually. And before I knew it, I was looking back on a rare experience; one that few young men get the opportunity to taste.
Now, could I have made it further in a football career? Maybe, maybe a little. I could have been more physically gifted, I could have been stronger, but what really would have made the difference? Initiative. Doing things that no one told me to do. Studying film, pushing myself even harder than the coaches, who were very well compensated, pushed us. That is the difference between me and the guys of my rough physical ability who actually had a cup of coffee, or maybe more, in the NFL. See, most of the time when I watch pro football, I look at the guys that play my former position and I feel like they were born to do it; like their DNA dictated that they become professional football players (e.g. Darnell Dockett, Ndomakong Suh). Most of the time I can't even believe that I played the same position as those guys. But every once in a while, I'll see myself out there: a barely passable physical specimen, inhabited by a guy who learned about initiative a little earlier than I did. Or maybe he had a little more than me, naturally. He won't be a Hall of Famer- he might not even be around long enough to earn the NFL pension- but his initiative has taken him to a higher "level of incompetence" than mine did.
You know who had initiative? My freshman year roommate, Cade McNown. He was gifted with toughness, but not with startling physical ability or height (he was a quarterback). He got thrown into action our freshman year, and had some good games and some terrible games. But he never stopped watching film, never stopped calling voluntary throwing sessions, and never stopped getting in the faces of guys that did not volunteer to participate. His sophomore year he was better, his junior year he was all-conference, and his senior year he was a Heisman Trophy finalist. He was the twelfth pick. overall, in the NFL draft. I truly believe that most guys with his physical abilities would have stayed- and probably been content as- mediocre college football players.
No one ever made me play football, but I was kind of funneled into it. I loved the sport already- it really is in my family's blood, and we often joke about how many damn football games my poor mom has had to sit through, with my dad being a coach and both her sons playing through college. And now my brother coaches, assisted by my dad, basically assuring my mother of a full lifetime of booster club baked potatoes, cheerleaders and trumpet players in braces, and nacho cheese. It's a good thing she loves the game.
I never played organized football until high school, but I always assumed I would be good. This was based solely- solely- on preteen cockiness, mind you. But I was pretty big, and I think by the time I got to the varsity level I had developed a little bit of actual goodness. I had good coaches that cared about what we were doing, made us do the right things, and I got pretty single-minded about it. I did what they told me to do, and then I was all-league. I kept doing what I was supposed to do, and I started getting recruiting letters. Then visits. Then a scholarship.
Same thing at UCLA: I showed up and worked, and did not quit- which was often tempting. Guys graduated, guys got hurt, and I started playing. Then I was a starter. I was a working part of the machine, solid enough that, when the machine was running as it was supposed to, the machine was pretty damn good. Did I stand out? Rarely. Rarely in a good way, and (hopefully) even more rarely in a bad way. We had our stars; the guys every team needs to do something impossible at just the right moment, the guys that break games wide open- the guys that wow. We had them in Cade and DeShaun Foster and Danny Farmer and Larry Atkins. We needed them, but we also needed guys like me.
One of the proudest moments of my whole career came during our extremely mediocre 1999 season- the last one I would ever play. From 1995 to 1998, Terry Tumey coached the defensive line at UCLA- he was the only position coach I knew in college for four years, and he believed that heavily rotating our personnel was our best strategy. It is clear to me now that the reason he believe that is because we had a very few standout performers, so the staff must have figured that hey, if everyone is just so-so, then we might as well keep them fresh. I'm sure that if we had Warren Sapp or Steve Emtman on the squad, they would have let those guys play until they were near dead. But we didn't, so a bunch of us played 25-40 snaps a game.
My senior year was different. Jethro Franklin was our coach, and if you were a starter, you were playing at least 75% of the snaps, so my playing time practically doubled. I was playing as many snaps in the first half as I had been all game the year before. He stuck with his guys, and I think I improved more in one year under him than I had over the previous several seasons. I also got more intravenous fluids during halftime that season then in all my previous seasons combined.
Like I said, my senior year was a rough one. We ended up 4-7, and were thoroughly unimpressive throughout the year. However, something clicked for me in the third- and second-to-last games of my career: an ugly loss to Arizona, and a very unlikely win against a heavily favored and theretofore Rose Bowl-bound Washington team. Against Arizona I had 13 total tackles (assisted and unassisted), and in the Washington game I had 11. These were not plays that would wow anyone, but I was in on ending about 15% of the plays their offenses ran, which was very good for a lineman. I wasn't setting the world on fire, but something had happened that put me in the right place at the right time a lot more than usual on those two Saturdays.
During one of those games, they ran a trap to my side. A trap is when they deliberately leave one of the defensive lineman unblocked and let his eagerness work against him. Here's how it works: the DL, on every snap, has been firing straight ahead into one or two 300 lb. OLs who are trying to drive him off the ball on every play. All of his strength and momentum has been going into not being driven off the ball. All of a sudden, on one play, the DL is left unblocked; his momentum carries him forward, plus he probably sees the QB or RB with the ball right in front of him. It is there for the taking and seems too good to be true- which it is, because by coming upfield you have given an OL from the opposite side a nice broad target into which he can lay his 300 lbs. But you don't see him, because you are looking upfield, salivating over the ballcarrier who is so close, yet so far away. Next thing you know you've been blindsided by the pulling OL and you're laid out flat on your back, gazing at the twilight sky and humming Summer Breeze.
The first time I got trapped was in my first game in high school, and it happened many times that game. But I thought I was doing fine because I did not know that the trap was something to worry about, I was so green. Our awful coach gave me shit about it, and I was like "I got what?" I had no idea what he was talking about- I thought I had done great (the pre-teen cockiness, again). The worst time I got trapped was my freshman year at UCLA, during a practice. I was playing end, and when the tackle in front of me blocked down I came upfield instead of squeezing down with him, like you're supposed to do. That was the last thing I remember before I heard the "oooooohs" coming from the guys on the sideline. It's kind of like they say in the poker movie Rounders: if you don't know who they're "oooooooh"ing at, it's you that got blown up. There's a silver lining, though: it was live-action He-Man and NFL Hall of Famer Jonathon Ogden that had dished out this particular humiliation, so looking back it is well worth the story.
Anyway, during one of those games during my senior year, they tried to trap me. We had studied film of their offense all week, and they had not shown any inclination toward running a trap- it didn't seem like it was in their playbook, and we had not prepared for it, but they ran the play, and left me unblocked. Instead of rushing upfield at the unattainable carrot of the ballcarrier, I squeezed down on the guard, turned and dipped my outside shoulder and blew up the trapping guard, forcing the RB to bounce outside, into the waiting arms of Robert Thomas or Tony White or one of our excellent young LBs. I did not make the tackle, and to the casual fan it probably just looked like a run for no gain. No big deal.
But when we watched the film, Coach Franklin rewound the play, paused it, and looked at me, silent. Eventually he spoke.
"How'd you know it was a trap, Pete?"
I shrugged. I don't know how I knew. Here was my coach asking me how I knew it was a trap, because it was something that he had not prepared us for in this particular game. But for that moment, 8.9 years into a 9-year career, it seems that everything I had learned in every practice and every game had come together and resulted in me doing the perfect thing at the right time, impressing and baffling the coach that, in all honesty, had probably taught me how to do it. I had such respect for him- and he made such a lasting impression on me- that I will never forget that one moment, that one play, when I impressed him.
But that was the result of showing up and working because I knew I had to- and I had someone holding me to it. The marathon was different. No one made me. No one really cared, and no one would have blamed me if, halfway through the training, I had decided that I was just too busy, or that I just didn't really want to do it. No one had any expectations about it, and I would have let down no one by calling it quits. I mean, don't we all have friends who have started training for marathons and triathlons and 1/2 marathons but, once they realize what it takes to actually do it, decide that happy hour is a much more immediately rewarding way to spend the afternoon after work?
But for some reason I stuck to it. I would measure out my runs in the car, sometimes stashing a Gatorade or Powerbar or GU behind a bush at the library so I could have some mid-run sustenance. I also ran at Santa Monica College when I didn't have the time to plan out a surface-street workout. On those tedious days I would pass my nutritional stockpile over and over and over, and I had rubber bands that I would wear on my wrists, transferring one from the left to the right every four laps- that's how I kept track of the mileage on those mind-numbing days.
I planned on a 3:42- that would be a pace of 8:30 per mile, which seemed quite attainable at the time, as I was running many, many miles in training faster than that. But I thought I was being prudent and conservative, and so 3:42 stood as my target time. I was sure I could do it.
I had friends and family in town, and they took the subway around to watch me go by at different points in the race. The first ten miles I mowed down like they were nothing. I would check my watch every time I was approaching a new mile marker, and every time, as I passed under the big inflatable archway, I had several seconds, sometimes more, to spare. I was chugging along, doing great.
I realized I was slowing down when I saw the mile 19 marker ahead and looked at my watch- I had about ten seconds to get to it, and it was at least a hundred yards away. No problem, I was only a few seconds behind. Somewhere during the next mile, however, I looked down at my watch; I should be crossing under marker 20 right now. I looked up; no marker on the horizon. I was practically crawling.
All of a sudden, I realized that those obnoxious stickers, t-shirts, etc. that say something to the effect of "The race starts at mile 20" were disturbingly, deeply true. I had heard that cliche many times before, but of course, only when you are really in the shit do cliches reveal themselves as entrenched, infallible wisdom. During my training, six miles was nothing; a jaunt, a warmup. And though six miles was no farther now, every step was agonizing, and I felt as if my hamstrings and my quads might cramp up at any moment. My biggest fear, though, was that I would be so laid up and crippled after finishing- or worse yet, not finishing- that I would be unable to get vertical for dinner that night. I had gone ahead and made a celebratory reservation at Fogo de Chao, and invited my parents and a whole bunch of my friends. I imagined them toasting me and my impressive finishing time and rising out of my chair- slowly of course- raising big glass of red wine back to them- and to myself, the conqueror.
Fogo de Chao is a Brazilian churrascaria; basically a steakhouse where, instead of taking your order, the waiters circulate carrying giant impaled hunks of meat and materialize tableside, carving knife quivering at the ready, with a look that says "what, you're gonna say no to linguica?!" It is a meal from King's Landing, regal in its excess, but hey- when is excess appropriate if not after running 26.2 miles?
At one point during that last stretch, I walked. But it felt like quitting, so I somehow started running again. By then, crossing in 3:42 was a distant dream- now we were talking pure survival. And I made it. I made it to the finish. More importantly, I made it to dinner.
I really don't have some poetic way to wrap this whole long story up. I guess I do see a lot of similarity between how I saw the marathon and how I saw chemotherapy, going in. Basically, I underestimated them both. I, in my naivete, felt like I would have some "kick" at the end of the marathon; that I would be able to find that higher gear that had always been there for me in shorter races, and I would finish strong. Same thing with chemo. During the frigid days of January, when I was just beginning to get a handle on the rhythms of my treatment, I looked forward to spring and figured I would be getting stronger and stronger, my physical condition improving with the warming weather. I figured I would be able to jump back on the treadmill of normal life right after my last treatment, and not have to turn down the speed at all. But it has been fevers, blood clots, ER visits, and crippling neuropathy over the last six weeks- hardly the kind of strong finish you picture when you start. But, through it all, I have been ticking off my last treatments- Wednesday is my final one- though the final stretch has been more of a limp than a sprint.
I don't think I will come out of this as proud as I am of the marathon; after all, there was no real initiative involved here. It has not taken any "want-to," and I have not really even had a choice. But it has taken some of what got me through the roughest of the football days as well as the marathon- just the idea that it could be much worse, and the belief that, no matter what, this will end and get better. Sure, I may not be as hale as I thought I would be at this point. But now it's not about initiative, and it sure isn't about sprinting to the finish. At this point, I've just gotta make it across. I've just gotta make it to dinner.
That feeling of things being right actually lasted for a while. I have a genuine home-stretch mentality now, which carried me through chemo the week after the two concerts. My energy dipped, as it always does, the Saturday after chemo, but I felt relatively good on Sunday, and it got better from there. Basically, after the stomach bug and the blood clot, I felt like I had the unpredictables licked, and I was back on track for a strong finish. That's what I meant when I said that a few days ago, here's what I was going to write; because a few days ago, that was all the news there was to report.
The moms came to town on Thursday, to reprise their 2013 visit in which they, along with Caitlyn, worked on beautifying the landscaping of our house. Having tackled the front last year, they focused on the bare and dog-dug strip of dirt along the back of the house, planting bushes that will presumably save our foundation from undue pressure by drinking up the water that usually collects there.
They're a good team, our moms, and they're fun to have around. It seems like most of what we talk about when they're here is where we're going to eat next.
I had to work on the first two nights of their visit, so I was looking forward to Sunday- we'd been invited to a neighbor's for Easter festivities. Jody Mulgrew, the California Central Coast's favorite crooner, is in town, so I invited him to come along, and we all had a Champagne toast before heading down the street.
Good booze, good food, good music, Sharpie self-portraits on boiled eggs; it was a perfect day, with weather to match. For some reason, I had woken up early, even after being up until about 2am, so at the end of the festivities, I took a nap. A long nap, from five to seven, which of course meant that I would probably be up until 3am.
We'd been out in the sun a little- just a little- and at dinner I felt a little chilled, but my face and head were hot. I went to the bedroom to take my temperature, which was 101.3 again (which made me wonder whether our Walgreens thermometer just had like three different temp. readings). I knew that if it went up another 0.1 degrees, I was ER-bound, and that, after the last experience, did not sound good to me. So I went to bed to read, hoping that my temperature would fall on its own.
Well, it didn't- it went up to 101.7, so I started packing a bag, not wanting to be bookless or snackless over what would surely be a long night. I assumed that there would be less action in the ER on Easter Sunday than on a normal Friday, but you never know.
That was two and a half days ago, and I am writing this from in the hospital. I am in the hospital. I have been admitted, because my immune system is nil, and I can't fight off anything right now. They are pumping me full of IV antibiotics, taking my vitals every two hours, taking blood, checking in- they are really making me feel important. Every morning, Dr. Greer comes in, trailed by six eager residents/doctors at various stages of their training.
It's a pretty sweet deal: I have a bed that goes up and down and a tv with thirty channels. I have a bathroom and a shower and a dorm-type mini-fridge. I have a fantastic view of downtown, and I have HBO GO. I have nurses that dote on me. Food deliveries, from my mom and Caitlyn's mom and Caitlyn, are frequent. I have effectively withdrawn from the world for a few days- but I am going home in a few hours.
Home: where the bed does not go up or down. Where there is no cable, no real view, and no call button. It's where you're expected to make your own meals and clean up after yourself, and I can't wait to get back.
The moms came to town on Thursday, to reprise their 2013 visit in which they, along with Caitlyn, worked on beautifying the landscaping of our house. Having tackled the front last year, they focused on the bare and dog-dug strip of dirt along the back of the house, planting bushes that will presumably save our foundation from undue pressure by drinking up the water that usually collects there.
They're a good team, our moms, and they're fun to have around. It seems like most of what we talk about when they're here is where we're going to eat next.
I had to work on the first two nights of their visit, so I was looking forward to Sunday- we'd been invited to a neighbor's for Easter festivities. Jody Mulgrew, the California Central Coast's favorite crooner, is in town, so I invited him to come along, and we all had a Champagne toast before heading down the street.
Good booze, good food, good music, Sharpie self-portraits on boiled eggs; it was a perfect day, with weather to match. For some reason, I had woken up early, even after being up until about 2am, so at the end of the festivities, I took a nap. A long nap, from five to seven, which of course meant that I would probably be up until 3am.
We'd been out in the sun a little- just a little- and at dinner I felt a little chilled, but my face and head were hot. I went to the bedroom to take my temperature, which was 101.3 again (which made me wonder whether our Walgreens thermometer just had like three different temp. readings). I knew that if it went up another 0.1 degrees, I was ER-bound, and that, after the last experience, did not sound good to me. So I went to bed to read, hoping that my temperature would fall on its own.
Well, it didn't- it went up to 101.7, so I started packing a bag, not wanting to be bookless or snackless over what would surely be a long night. I assumed that there would be less action in the ER on Easter Sunday than on a normal Friday, but you never know.
That was two and a half days ago, and I am writing this from in the hospital. I am in the hospital. I have been admitted, because my immune system is nil, and I can't fight off anything right now. They are pumping me full of IV antibiotics, taking my vitals every two hours, taking blood, checking in- they are really making me feel important. Every morning, Dr. Greer comes in, trailed by six eager residents/doctors at various stages of their training.
It's a pretty sweet deal: I have a bed that goes up and down and a tv with thirty channels. I have a bathroom and a shower and a dorm-type mini-fridge. I have a fantastic view of downtown, and I have HBO GO. I have nurses that dote on me. Food deliveries, from my mom and Caitlyn's mom and Caitlyn, are frequent. I have effectively withdrawn from the world for a few days- but I am going home in a few hours.
Home: where the bed does not go up or down. Where there is no cable, no real view, and no call button. It's where you're expected to make your own meals and clean up after yourself, and I can't wait to get back.
The King, George, and Weezer
A few days ago, here's what I was going to write about:
George Gibbons and BB King:
Caitlyn's dad was in town, his visit centered around Caitlyn's gift of tickets to see the legendary BB King at the Schermerhorn. When I got home from the hospital on Saturday, April 5, Caitlyn and her dad were there, unloading two salvaged teak chairs, a table, and a Corian tabletop of ungodly mass. The Gibbons clan is eagle-eyed when it comes to potential scrap windfalls, and their acumen with tools can border on alchemy. That said, two solid but dingy teak chairs, one of which had been missing an arm, are now sparkling and whole, and they have a new home in the backyard. The heavy slab of Corian will either become a tabletop, or we'll use it as a shield if our home is assaulted by AK-47-wielding assassins.
The show itself was good- but let me begin by stating that BB King is 88 years old, and you can just tell that his fingers can't quite do what his mind is telling them to do. That said, he still rips off some pretty sweet licks on Lucille, and his singing is solid.
His show, or the start of it at least, is pretty theatrical, as his eight-piece band of young whippersnappers (aged 45-80) comes out, tunes up, and launches into a nearly thirty minute "warmup" number. The rotund but natty band director prances around and points to each guy, telling each one when to step up and take a long solo. The tune rose and fell and climaxed, and it was awesome. The pace slowed down a bit after BB came out following his Mike Tysonish introduction. One of the highlights, humor-wise, was BB introducing the band. Once he finished with the rhythm section on his left, he turned to his right and said "on guitar tonight..." followed by something that we, the crowd, assumed was the guitarist's name, though what he said was not too clear. After our applause for the band member subsided, BB turned to his guitarist and said, into the mic, "What's your name, son?" Son! The guy had to be fifty, at least. But like I said, BB is 88, which probably licenses him to 1) not bother to memorize (or just plain forget) the names of the guys he tours with, and 2) call grown-ass men, maybe grandfathers themselves, "son."
The Robert Cray Band was the opening act, and they were fantastic. I have a few Cray albums from when I was a kid and he had a crossover hit with Smoking Gun- in fact, the first concert I ever went to unsupervised was Cray at Flint Center at De Anza College, when he was supporting the Strong Persuader album. I can't remember what year that was, but Was (Not Was) was his opening act that night, and you can be damn sure that they milked the hell out of their single Walk the Dinosaur, which I should note has made many a "Worst Songs of All Time" list- not that I necessarily agree with that.
Anyway, Cray's band was tight, his voice was clear and strong, and it was cool to see an unapologetic bluesman delighting the crowd with multiple solos on every song, each Stratocaster a seeming extension of his body. I suppose seeing him live again after all these years must have closed some great cosmic circle in my life.
The Robert Cray Band was the opening act, and they were fantastic. I have a few Cray albums from when I was a kid and he had a crossover hit with Smoking Gun- in fact, the first concert I ever went to unsupervised was Cray at Flint Center at De Anza College, when he was supporting the Strong Persuader album. I can't remember what year that was, but Was (Not Was) was his opening act that night, and you can be damn sure that they milked the hell out of their single Walk the Dinosaur, which I should note has made many a "Worst Songs of All Time" list- not that I necessarily agree with that.
Anyway, Cray's band was tight, his voice was clear and strong, and it was cool to see an unapologetic bluesman delighting the crowd with multiple solos on every song, each Stratocaster a seeming extension of his body. I suppose seeing him live again after all these years must have closed some great cosmic circle in my life.
That show was on Monday the 7th. One of the many reasons I was bummed to spend the night in the hospital two Fridays ago is that we had Weezer tickets for Saturday, and I sure as hell did not want a silly, swollen, discolored limb to get in the way of that trip down memory lane. They had booked two shows at the Ryman; the first would feature their first album, Weezer, in its entirety, and they'd play Pinkerton the next night. When I got the email announcing these shows, I was gripped by an excitement that took me by surprise. I have never considered myself a huge Weezer fan, per se, but the thought of them playing the album that resided in my pull-out (or maybe detachable-face) stereo in high school spurred me to get online ten minutes before the on-sale time and battle the masses (ok, not battle, but refresh and refresh) until two tickets were on their way. I hadn't looked forward to a concert this much in a long time, and after spending an infuriating and tedious night in the hospital, it was just what I needed. Luckily, the doctor I saw the morning of the show was of the same generation as me and therefore sympathized with my desire to break free and see Weezer. I like to think that that factored in to why she set me free that morning, and although that is an incredibly silly belief, the net result was this: Caitlyn and I were off to the Ryman on Saturday night.
Caitlyn was lukewarm about the tickets when I bought them, and understandably so; she was just in junior high when I was cruising around, windows down, slurping a Slurpee and blasting Say it Ain't So, so I'm sure she did not have the irreplaceable teenage associations with the album. However, once the band started in on My Name is Jonas, it was clear that Caitlyn knew all of the words the pretty much the whole album- maybe even better than I did, but not more than the guy in front of us with the light-up cape emblazoned with the Weezer's winged-W logo.
Synapses in my brain that had not fired since 1996 were on crackling like moistened Pop Rocks when the band played the tunes that I had loved passionately but since forgotten. Hearing the band play The World Has Turned and Left Me Here scratched an eighteen year-old itch that I had no idea was even irritating my musical soul. Holiday was perfect, down to the haunting harmonies of the "Haa-art Bee-eat" refrain. And these were just the album cuts, unknown to the casual MTV viewer of the mid-nineties.
The hits from the album united the crowd in a way that I wish happened at every show, as the band played the album note for note, down to the iconic guitar solo in Say It Ain't So, the stoned, mumbled semi-lyrics before each verse of Undone (The Sweater Song) (you know what I'm talking about, right?), and of course- of course- the squealing guitar lick before the last chorus of Buddy Holly. I mean, if you aren't hearing those eight notes in your head right now, I'm sorry, but your nineties credentials will have to be reviewed.
Only in Dreams, the epic last song on the record, was true to the recorded version, from the plucky bass, the delicate, lullaby-like verses, and the furious guitar solos. The tune's arc is like a sheet of paper, whipped into chaos by a whirlwind, but allowed to rock gently back to earth on a barely-perceptible breeze. After the final bass notes petered out, ending the song, the album, and the show, the rabid crowd chanted, clapped, and pounded the pews demanding an encore. But the house lights and music came on, and it was clear that the band had no intention of playing another song that night. Most of the crowd filed for the doors, but an extremely vocal (and intoxicated) minority near the stage wouldn't drop it. They were pissed, as I probably would have been at any other show where the crowd was so deserving of an encore. But this was different. We came to hear the Blue Album, and that's what we got- note for note, lick for lick, inflection for inflection, and when Only in Dreams is over, the the Blue Album is over. The show was over, and it was perfect.
Only in Dreams, the epic last song on the record, was true to the recorded version, from the plucky bass, the delicate, lullaby-like verses, and the furious guitar solos. The tune's arc is like a sheet of paper, whipped into chaos by a whirlwind, but allowed to rock gently back to earth on a barely-perceptible breeze. After the final bass notes petered out, ending the song, the album, and the show, the rabid crowd chanted, clapped, and pounded the pews demanding an encore. But the house lights and music came on, and it was clear that the band had no intention of playing another song that night. Most of the crowd filed for the doors, but an extremely vocal (and intoxicated) minority near the stage wouldn't drop it. They were pissed, as I probably would have been at any other show where the crowd was so deserving of an encore. But this was different. We came to hear the Blue Album, and that's what we got- note for note, lick for lick, inflection for inflection, and when Only in Dreams is over, the the Blue Album is over. The show was over, and it was perfect.
I have seen some pretty cool shows at the Ryman, but none even came close to the spirit of this one. The whole place was on its feet for the whole thing, and as I stood there, with my beautiful wife and the captivated crowd- every last person- belting out "Say it ain't soooo whoa-oh," it occurred to me that this one was of the first times since my treatment started that I felt normal. Like I had hair and eyebrows. Like I did not have cancer. Like nothing was wrong in the world at all.
Unknown unknowns
I can't remember- in my last post, did I somehow imply that I was in a tough stretch of my treatment? Did I make it seem like before that I thought I had it figured out, but the second to last quarter of treatment had thrown that whole belief for a loop, with a little cough and sniffle? If so, forgive me. I had no idea what the hell I was talking about.
On the Friday (March 28) after my most recent (9th) treatment, I went to work knowing it would be a rough night. I was fatigued by the time I got to work, which made sense, considering that the steroid was wearing off- I was going from A-Rod to Craig Counsell, and fast. But I made it through, and by the time I got home I was so tired that I skipped the bath that has been my end-of-night ritual ever since I realized it helped with the problems I mentioned two posts ago. I hit the sack, face-down.
I woke up about an hour later, and vomited. Luckily, I made it to the toilet in time. Caitlyn's first comment was a pithy "That's new."
It was new. I had been a little nauseous throughout treatment, but there are pills for that, and they had worked on me. This, though... An hour after cleaning up and going back to bed, a wave of nausea woke me up again, and I spent a split-second too long denying that I was going to need to get to the bathroom. The first time I had vomited- this time, I puked. I puked in earnest, at the doorway of the bathroom, and it was not pretty, visually. Olfactorily, worse. That was how the weekend started.
On Saturday, there was no real stomach sickness, but there was some fever. Caitlyn was committed to going to a neighbor's shower (baby, that is) at 11am, and I promised her that I would call the on-call doctor to see whether I needed to go to the ER. See, a fever in a chemotherapy patient, apparently, is a huge deal; it can be an indicator of an infection, which can kill you dead. So while normally you might think to just sweat it out while drinking a lot of fluids and watching season 6 of Mad Men, the chemo patient has to take it more seriously.
That said, I did not want to get up and go to the ER. My fever was just under 100 when Caitlyn left, right before I called the doc. When he called me back about twenty minutes later, he asked me to take my temperature again- this time, it was 100.3. When I reported that number to him, he informed me that generally, they ask patients with a fever of 100.4 or above to come in to the ER. Meanwhile, I am looking down at the thermometer: it was a Walgreen's-brand oral thermometer that weighs about as much as a Q-Tip, probably cost about four cents to produce, and I'm sure we tossed into our basket one day at the checkout along instead of a blister-pack of Eclipse gum or an issue of Country Weekly. Did I really want to trust this my health to this instrument's accuracy?
I didn't want to, but I did. The slight fever got slighter, and I was fine, though the weekend and much of Tuesday were lost. It's hard to convey the lack of energy that is concomitant with the days about a week after a treatment. I usually lie in bed for about an hour after waking up to psyche myself up to brush my teeth and make the bed. Sometimes these chores seem overwhelming. Sometimes Caitlyn will ask me to help her with the dishes, and it makes me angry, because that minor request feels unreasonably major to me- how can't you see that I can't do that right now? It's not her fault. I usually get up and do it and then go back to bed or the couch with an unexpected sense of accomplishment.
Did I mention that my face gets really tan with just a few minutes of sun, though it is not a "good" tan. It reminds me of the color of a 7-11 hot dog. A few weeks ago we had a great break in a long stretch of cold weather; it was about 75 degrees here, and sunny. I celebrated the weather by taking a towel out back and lying in the warm sun with Lea. It felt great- the warmth, the vitamin D- but my hue was not a healthy or enviable one at the end. Since then, I have been doing yardwork in shorts, long sleeves, and a floppy hat. Our neighborhood kids are good kids, but I wouldn't blame them if they mocked me- I probably would have.
My hands and feet have borne the brunt of a good deal of chemo symptoms: they swell, they tingle, and they throb. However, on Friday I noticed that my right hand- the whole arm, really- was looking a little more hot-doggy than the left. That's weird, I thought. I am out of shape right now, but it seemed more likely to me that the previous day's game of fetch with Lea would cause a little muscle soreness- but not swelling of the whole limb. I spoke to Caitlyn at noon and casually tossed in that my arm was swollen. We agreed that I should email the nurse practitioner- she always gets right back to me, whereas messages to my doc always seem to be returned by someone else.
The nurse asked me a few questions, and I answered them back. I went to work and asked Caitlyn to look online for an urgent care clinic that I could possibly visit the next day. That was it, until Caitlyn showed up at my work a few hours later, intent on taking me to the ER. Doc's orders, she said, as the hot dog appearance of my arm could mean infection or blood clot. So off we went at 8 pm to spend Friday night at the ER. They told me it could be a couple of hours before I could get the ultrasound I needed- it didn't take that long, but then I needed a CT scan, and that was when the waiting really began. Caitlyn and I spooned on the tiny bed, and I imagine that when I was out of the room undergoing the tests, she stretched out and slept and luxuriated on that padded plank like it was a king-sized Hastens. After enough fitful sleep to give her a some kind of energy, Caitlyn went out to get me FourthMeal, but Taco Bell was closed (4am, fyi), so she returned with Jack-in-the-Box egg sandwiches, hash browns (a term I use very loosely when referring to any fast-food breakfast "potatoes"), and a Sprite so big you could skim a rock on it. But by the time I had my CT scan and the results, it was 5am. The ER is like Costco on a Sunday with one cashier open. Caitlyn was set free around 6 to go home, then pick her dad up from the airport. I ended up getting home at 1pm, more than 14 hours after we'd arrived.
Long story short: blood clot. A big one, in my shoulder/arm, thanks to the port. I don't feel different, I don't feel worse, but now I have to spend three months on a blood thinner. The one I am on now has to be injected, twice a day. Luckily, I have been strategically adding subcutaneous fat for several months- but only just now have we learned the mission of Project Butter.
These things pile up. See, I knew I would feel shitty. I knew I would (most likely) lose my hair. Those were the known knowns. And I knew there were some x-factors: neuropathy, fatigue and depression were the known unknowns- would I have to deal with these, too? But now, at this late point in my treatment, the unknown unknowns are popping up- stuff I didn't even wring my hands over because I had no fucking clue that these were things that could happen. I mean, a week ago the neuropathy in my feet, my continuing GI challenges, the fatigue, remembering to take my Voriconazole twice a day; these were my problems. Familiar. Predictable. But now I have a shopping bag full of dosed syringes and a gut purple with bruises, and it makes me long for the good old days of last week, before I knew that arm swelling, blood clots, and injectable blood thinners were even in the cards- or in the deck at all.
But, as annoying cable news hosts would put it, this is the new normal. Being bald is also normal now, and I have lopped a ton of drying time (maybe 1 min./day, subsequently then just wasted again, not just because of head-hair) off of my post-shower routine. Real quick- here is the order in which I miss my hair:
1- Eyebrows- eyebrows, it seems, are what keep us from looking like reptiles. I am looking more and more like Rick Scott every day, though I think he looks like that with brows. Caitlyn always made fun of the several blonde (she says grey) eyebrow hairs I had, but she has a new appreciation for them, since they are hanging the toughest.
2- Face- If I don't shave for a few days, I look like a seventh grader that hasn't shaved for a few days.
3- Head- I have embraced this style before, but it was always my choice. It looks nice freshly shaved, but sad and depressing when it's not. I always put off shaving my head, which is stupid since it only takes 2 minutes. Gotta be honest- it will be nice to have it back.
4- Buttocks- these are disturbingly, distractingly smooth, but it's not nearly as glamorous as it sounds. I remember an episode of Cheers when Carla, wagering on Sam's (allegedly waning) seductive abilities, said, "I bet that Sam still has some hair on his butt" This meant yeah, that's the manly thing to have, and he still has it, and he can still get laid. As a kid, I knew what she meant, but I had no idea why they would use that as an indicator of machismo or virility, or use it positively at all. Now, I get it.
5- Chest- I am just not myself without it, though I did delight in wearing a suit with unbuttoned shirt and no undershirt. That's not something I usually do.
6- Eyelashes- I have seven of these.
7- Legs- The limbs, for some reason, have hung onto a decent amount of hair, but I think my jeans are making my legs patchy. Luckily, it's linen season.
PH
I didn't want to, but I did. The slight fever got slighter, and I was fine, though the weekend and much of Tuesday were lost. It's hard to convey the lack of energy that is concomitant with the days about a week after a treatment. I usually lie in bed for about an hour after waking up to psyche myself up to brush my teeth and make the bed. Sometimes these chores seem overwhelming. Sometimes Caitlyn will ask me to help her with the dishes, and it makes me angry, because that minor request feels unreasonably major to me- how can't you see that I can't do that right now? It's not her fault. I usually get up and do it and then go back to bed or the couch with an unexpected sense of accomplishment.
Did I mention that my face gets really tan with just a few minutes of sun, though it is not a "good" tan. It reminds me of the color of a 7-11 hot dog. A few weeks ago we had a great break in a long stretch of cold weather; it was about 75 degrees here, and sunny. I celebrated the weather by taking a towel out back and lying in the warm sun with Lea. It felt great- the warmth, the vitamin D- but my hue was not a healthy or enviable one at the end. Since then, I have been doing yardwork in shorts, long sleeves, and a floppy hat. Our neighborhood kids are good kids, but I wouldn't blame them if they mocked me- I probably would have.
My hands and feet have borne the brunt of a good deal of chemo symptoms: they swell, they tingle, and they throb. However, on Friday I noticed that my right hand- the whole arm, really- was looking a little more hot-doggy than the left. That's weird, I thought. I am out of shape right now, but it seemed more likely to me that the previous day's game of fetch with Lea would cause a little muscle soreness- but not swelling of the whole limb. I spoke to Caitlyn at noon and casually tossed in that my arm was swollen. We agreed that I should email the nurse practitioner- she always gets right back to me, whereas messages to my doc always seem to be returned by someone else.
The nurse asked me a few questions, and I answered them back. I went to work and asked Caitlyn to look online for an urgent care clinic that I could possibly visit the next day. That was it, until Caitlyn showed up at my work a few hours later, intent on taking me to the ER. Doc's orders, she said, as the hot dog appearance of my arm could mean infection or blood clot. So off we went at 8 pm to spend Friday night at the ER. They told me it could be a couple of hours before I could get the ultrasound I needed- it didn't take that long, but then I needed a CT scan, and that was when the waiting really began. Caitlyn and I spooned on the tiny bed, and I imagine that when I was out of the room undergoing the tests, she stretched out and slept and luxuriated on that padded plank like it was a king-sized Hastens. After enough fitful sleep to give her a some kind of energy, Caitlyn went out to get me FourthMeal, but Taco Bell was closed (4am, fyi), so she returned with Jack-in-the-Box egg sandwiches, hash browns (a term I use very loosely when referring to any fast-food breakfast "potatoes"), and a Sprite so big you could skim a rock on it. But by the time I had my CT scan and the results, it was 5am. The ER is like Costco on a Sunday with one cashier open. Caitlyn was set free around 6 to go home, then pick her dad up from the airport. I ended up getting home at 1pm, more than 14 hours after we'd arrived.
Long story short: blood clot. A big one, in my shoulder/arm, thanks to the port. I don't feel different, I don't feel worse, but now I have to spend three months on a blood thinner. The one I am on now has to be injected, twice a day. Luckily, I have been strategically adding subcutaneous fat for several months- but only just now have we learned the mission of Project Butter.
These things pile up. See, I knew I would feel shitty. I knew I would (most likely) lose my hair. Those were the known knowns. And I knew there were some x-factors: neuropathy, fatigue and depression were the known unknowns- would I have to deal with these, too? But now, at this late point in my treatment, the unknown unknowns are popping up- stuff I didn't even wring my hands over because I had no fucking clue that these were things that could happen. I mean, a week ago the neuropathy in my feet, my continuing GI challenges, the fatigue, remembering to take my Voriconazole twice a day; these were my problems. Familiar. Predictable. But now I have a shopping bag full of dosed syringes and a gut purple with bruises, and it makes me long for the good old days of last week, before I knew that arm swelling, blood clots, and injectable blood thinners were even in the cards- or in the deck at all.
But, as annoying cable news hosts would put it, this is the new normal. Being bald is also normal now, and I have lopped a ton of drying time (maybe 1 min./day, subsequently then just wasted again, not just because of head-hair) off of my post-shower routine. Real quick- here is the order in which I miss my hair:
1- Eyebrows- eyebrows, it seems, are what keep us from looking like reptiles. I am looking more and more like Rick Scott every day, though I think he looks like that with brows. Caitlyn always made fun of the several blonde (she says grey) eyebrow hairs I had, but she has a new appreciation for them, since they are hanging the toughest.
2- Face- If I don't shave for a few days, I look like a seventh grader that hasn't shaved for a few days.
3- Head- I have embraced this style before, but it was always my choice. It looks nice freshly shaved, but sad and depressing when it's not. I always put off shaving my head, which is stupid since it only takes 2 minutes. Gotta be honest- it will be nice to have it back.
4- Buttocks- these are disturbingly, distractingly smooth, but it's not nearly as glamorous as it sounds. I remember an episode of Cheers when Carla, wagering on Sam's (allegedly waning) seductive abilities, said, "I bet that Sam still has some hair on his butt" This meant yeah, that's the manly thing to have, and he still has it, and he can still get laid. As a kid, I knew what she meant, but I had no idea why they would use that as an indicator of machismo or virility, or use it positively at all. Now, I get it.
5- Chest- I am just not myself without it, though I did delight in wearing a suit with unbuttoned shirt and no undershirt. That's not something I usually do.
6- Eyelashes- I have seven of these.
7- Legs- The limbs, for some reason, have hung onto a decent amount of hair, but I think my jeans are making my legs patchy. Luckily, it's linen season.
PH
The Third 500
Well, it seems like this chemotherapy thing is a microcosm for life- just when I think I have it figured out and down to a reliable routine, a curveball drops into the strike zone. No- baseball doesn't quite work as the metaphor here, though the therapy is seemingly endless.
OK, it's third and six and we're just past midfield. The defense has lined up their third-down rush end, and they're walking up the strong-side cornerback as the slot receiver motions... no, too complicated.
Here it is: I'm in the third 500. For those of you (like me) that never rowed crew, imagine a 2k race, and divide it up into four 500m sections. The first is cake: pure virginal adrenaline will get you through that one. The second you cruise through- you are starting to hit your stride, and you're still pretty fresh. The fourth 500 sucks, but it's the home stretch, and who can't suck it up for a few more minutes?
But the third 500- the adrenaline is long gone by then, and so is the freshness. The start is a distant memory, but the finish is not quite in sight. It's just pure drudgery. And that's where I am.
I was given a little lift a few weeks ago when I started going back to work- just a few nights a week, but enough to make me tired in the good way, and enough to get a little positive cash flow. Sure, I missed being able to do whatever I wanted every night, but it was good to be back in the land of the living, so to speak. But then, on Friday morning, after two impossibly beautiful and temperate days here, the first signs of a cold showed up. The sore throat, the phlegm.
I know, I know- big fucking deal. That's what I would say under any other circumstances. And I would normally just suck it up and lie around on my days off until it went away. But, in my 3 1/2 months of relative good health during chemo, I kind of lost view of the fact that one of the dangers of chemo is that it weakens, and it compromises, the immune system. All of a sudden, during chemo, the kinds of things you would normally just suck up and ignore are not quite as ignorable and suck-uppable.
Not that I am in bad shape- I'm not. I'm just a little under the weather, which has led me to the rare (in normal circumstances) decision to skip work for a few days, which has left me feeling lazy and lumplike and depressed. Which is funny, because who really wants to go to work?
The other side of that is that there is always- always- work to be done here at home, in the form of writing songs or blogs or anything else. The amazing thing about that is it is a surefire way to feel great- just put in an hour or two, and even if you come up with shit, it opens up a whole new realm of perspective. It makes you feel useful. It allows you to plug into something that the greatest minds of all time plugged into. It is never wrong.
But man, is it hard to do on some days. Ever since I have gotten sick, I have found it harder to write, and I don't know whether that is an effect of "chemo-brain" or I am just making excuses. Sure, I have been writing the blog a little, but not really in the grind-it-out-day-after-day way that is necessary when you fancy yourself a real writer.
Speaking of real (excellent) writers, I met Jason Isbell at Whole Foods the other day. That's Nashville for you. For those of you that don't know who that is, buy his album Southeastern, then we'll talk.
I called AT&T the other day to find out why I had been billed on March 3rd, and was slated to be billed again on March 30th. The lady (who was in India, judging by everything) quickly figured it out: my payment always comes out on the 30th of the month. She asked me "Did you notice that February only had 28 days this year?" I told her that yes, I had noticed there was something strange about February this year. Problem solved.
So, the quick update is this: I am ok, but a little sick. Bo Gibbons is coming out here this weekend, which will be sweet. I am dealing more and more with CIPN, which is Chemotherapy Induced Peripheral Neuropathy- tingling, numbness, and pain in the hands and feet. This is a side effect of vinblastine, and it is not necessarily reversible. My hands are ok, but my feet are terrible- I could handle another 8 weeks of this, but not another 40 years.
Come to think of it, I never really gave much thought to any of the long-term side-effects of chemotherapy, which are too numerous to name; I just figured they would not affect me. I am young and strong. I was extremely healthy before this, and I will be extremely healthy after this. Same with the potential side-effects of the looming radiation treatment: lung and esophageal damage, etc. Not gonna happen. It is easy to deny when it is purely theoretical, but much harder when it starts creeping in and gets worse with every treatment. And, much like every discomfort associated with this sickness and treatment, my first instinct is to say "hey, this ain't so bad- I can handle it." Then, after a while, after it gets a little more serious and after I think about the fact that it might never get better, I think "hey, this fucking hurts!"
So their response to that last statement was to lower the vinblastine dose by 25%, and so far there has been no improvement. So I don't know what the next treatment will bring.
OK, it's third and six and we're just past midfield. The defense has lined up their third-down rush end, and they're walking up the strong-side cornerback as the slot receiver motions... no, too complicated.
Here it is: I'm in the third 500. For those of you (like me) that never rowed crew, imagine a 2k race, and divide it up into four 500m sections. The first is cake: pure virginal adrenaline will get you through that one. The second you cruise through- you are starting to hit your stride, and you're still pretty fresh. The fourth 500 sucks, but it's the home stretch, and who can't suck it up for a few more minutes?
But the third 500- the adrenaline is long gone by then, and so is the freshness. The start is a distant memory, but the finish is not quite in sight. It's just pure drudgery. And that's where I am.
I was given a little lift a few weeks ago when I started going back to work- just a few nights a week, but enough to make me tired in the good way, and enough to get a little positive cash flow. Sure, I missed being able to do whatever I wanted every night, but it was good to be back in the land of the living, so to speak. But then, on Friday morning, after two impossibly beautiful and temperate days here, the first signs of a cold showed up. The sore throat, the phlegm.
I know, I know- big fucking deal. That's what I would say under any other circumstances. And I would normally just suck it up and lie around on my days off until it went away. But, in my 3 1/2 months of relative good health during chemo, I kind of lost view of the fact that one of the dangers of chemo is that it weakens, and it compromises, the immune system. All of a sudden, during chemo, the kinds of things you would normally just suck up and ignore are not quite as ignorable and suck-uppable.
Not that I am in bad shape- I'm not. I'm just a little under the weather, which has led me to the rare (in normal circumstances) decision to skip work for a few days, which has left me feeling lazy and lumplike and depressed. Which is funny, because who really wants to go to work?
The other side of that is that there is always- always- work to be done here at home, in the form of writing songs or blogs or anything else. The amazing thing about that is it is a surefire way to feel great- just put in an hour or two, and even if you come up with shit, it opens up a whole new realm of perspective. It makes you feel useful. It allows you to plug into something that the greatest minds of all time plugged into. It is never wrong.
But man, is it hard to do on some days. Ever since I have gotten sick, I have found it harder to write, and I don't know whether that is an effect of "chemo-brain" or I am just making excuses. Sure, I have been writing the blog a little, but not really in the grind-it-out-day-after-day way that is necessary when you fancy yourself a real writer.
Speaking of real (excellent) writers, I met Jason Isbell at Whole Foods the other day. That's Nashville for you. For those of you that don't know who that is, buy his album Southeastern, then we'll talk.
I called AT&T the other day to find out why I had been billed on March 3rd, and was slated to be billed again on March 30th. The lady (who was in India, judging by everything) quickly figured it out: my payment always comes out on the 30th of the month. She asked me "Did you notice that February only had 28 days this year?" I told her that yes, I had noticed there was something strange about February this year. Problem solved.
So, the quick update is this: I am ok, but a little sick. Bo Gibbons is coming out here this weekend, which will be sweet. I am dealing more and more with CIPN, which is Chemotherapy Induced Peripheral Neuropathy- tingling, numbness, and pain in the hands and feet. This is a side effect of vinblastine, and it is not necessarily reversible. My hands are ok, but my feet are terrible- I could handle another 8 weeks of this, but not another 40 years.
Come to think of it, I never really gave much thought to any of the long-term side-effects of chemotherapy, which are too numerous to name; I just figured they would not affect me. I am young and strong. I was extremely healthy before this, and I will be extremely healthy after this. Same with the potential side-effects of the looming radiation treatment: lung and esophageal damage, etc. Not gonna happen. It is easy to deny when it is purely theoretical, but much harder when it starts creeping in and gets worse with every treatment. And, much like every discomfort associated with this sickness and treatment, my first instinct is to say "hey, this ain't so bad- I can handle it." Then, after a while, after it gets a little more serious and after I think about the fact that it might never get better, I think "hey, this fucking hurts!"
So their response to that last statement was to lower the vinblastine dose by 25%, and so far there has been no improvement. So I don't know what the next treatment will bring.
This post is not for everyone
About a month or so ago, I was talking to my mom and she told me that one of her friends had read up on my blog and commented on how much she liked my last post. I said thanks, that's nice, but then thinking of what was my most pressing ailment at the time, added "Wait 'til she reads my next one about how my asshole hurts." We laughed. It was funny.
Sometimes you blink and a month has gone and you don't really know where and then you get texts from good friends asking you how you are, you know, since you have not updated your blog in so long. They are texts and calls out of genuine concern, but they do succeed, whether they intend to or not, in guilting me into sitting down and updating the blog. My own guilt is heavy, yes, but theirs apparently does the trick even better.
During the month when I was not updating the blog, I thought about what to write about- what truths have I learned this month that those not in chemotherapy have been unlucky enough to miss out on? What can I share? I'm sure it has been something, but maybe it has yet to solidify as a pithy aphorism or life lesson. Maybe it's nothing. I don't know. But you know what is true today that was true then? My asshole still hurts- much worse than it did when I first made that crack to my mom.
So let this be a warning to anyone who may wish to stop reading now: THIS POST, FROM HERE ON DOWN, WILL MOSTLY BE ABOUT THE STATE OF MY ASSHOLE, AND OTHER PHYSICAL AILMENTS
You have been warned. Turn back now if you want no part of it.
I have tried dozens of times to start writing in a journal. I am no good at it. I am sure I could get better, but I never really know what to say? Do I make it just a play-by-play of my days, or do I talk about how I feel about everything? Do I write it as if one of my grandchildren will someday find it (and be bored enough with their own lack of goings-on to actually read through it), or do I write with the candor of private, ephemeral thoughts? I never know, so my writing always seems stilted and too formal, and I start sentences laboriously, with "Such is the..." and stuff like that.
But there is value to it. It was a either a wise man or my pal Sam Wooden who said something like this to me: We remember our lives in chunks. That is true. I remember that 2008 was a great year. I remember the same about 2006. But do I remember the day-to-day? The shitty days in the great years, or the best days of the forgettable years? Barely. I remember big chunks: the summer of '06, December '04, January '09- but don't press me on details. That's why a journal is a great idea, and that is why it's a bummer that I am a flop at maintaining one.
So my version of a journal is this blog, and a weekly entry; well, I guess that's my version of what would be, in an ideal practice, a daily one. And like I said, it's much better for me to write to someone, or someones, than to myself. But then, if these people exist, what do they want to read? Or what don't they want to read about? I am pretty sure that they don't want to read about my asshole and its current issues. Pretty darn sure.
But don't they want the truth? The real truth, and the down and dirty shit about what's going on? I think they do. No asshole talk, but gimme the truth- which is it?
To this day, I don't think I know what cancer feels like. I might have been a little tired over the past year or so, but I don't have my finger on any kind of acute "cancer" symptoms, other than the night sweats.
Chemotherapy- now that's some shit I do know. How sick and itchy you feel when the poison is going in, the dread you feel the night before and especially when you are trying to get out of bed too early in the morning to go to treatment. The instantaneous and fleeting and gagging taste of heparin in your mouth as they flush out your port.
The first week I learned what it was like have serious havoc played with your GI system- from constipation to stabbing stomach pains. Trying so hard to shit I could have read Gravity's Rainbow during one trip to the bathroom. Luckily, those symptoms have subsided, but one has risen, seemingly out of nowhere, to become King of my physical banes: a torn, bleeding anus.
The worst thing is, I have taken all the precautions prescribed to prevent such a thing: I eat oatmeal and fruit, I drink plenty of fluids, I take Senna-S, I take Miralax. I exercise. I do all the things the pros usually prescribe, assuming that the patient is a dehydrated, sedentary, obese, fruit-averse Krispy Kreme addict. If I was one of those, I might have some reasonable recourse. But I'm not, so I'm like what now?
One funny aside: I was looking online to address this problem, and one relatively reputable medical advice site warned "While it may be tempting to use a mirror or have a friend look..." I admit, I have thought about the mirror thing. But I would definitely- definitely- not classify it as "tempting."
So now I dread taking a shit. It's not that bad really considering it is just once or maybe twice a day, but the actual act is pure torture. At the beginning you trick yourself into thinking that maybe this time won't be so bad, and some aren't as bad as others, but most are excruciating. The best way I can describe it is that it's like you are shitting out something that has one or two sharp, craggy edges. I hope that made you cringe. It's the worst. You're lucky if it is quick. Sometimes the pain persists after you're done, and it's like you are carrying a lava rock in your asshole. I'm telling you, it is not fucking pleasant. And I told you you didn't want to read this.
The point of this is, I am constantly "aware" of my anus right now. It does not always hurt, but I can always feel it, which is not the normal blissful state of things. Really- you don't know how good you've got it when you're walking around, whistling maybe, with anything but your searing asshole on your mind.
That's my main medical gripe right now. After that is the neuropathy, which is numbness/tingling (and I would add /pain) to the extremities- my feet mostly, especially since I have been working on my feet about three nights a week. When the night is over it feels as if my feet have been filled with some super-dense, sensate, electrified goo, with intermittent regular old pain. This feeling makes sleeping tough. Hydrocodone makes it easier, fortunately, but hydrocodone also makes it easy to love hydrocodone, so I have been doing my best to avoid it whenever possible, substituting some remedies that are less "accepted" by the medical and legislative establishments of this state. Unfortunately, hydrododone has the edge re: preserving functionality; some medicines, even in modest, semi-Clintonian doses, reduce my cognitive abilities to the point that I am only to be trusted with the preparation and consumption of raisin bran and watching Girls on HBO GO.
I am happy to report that I am in the middle of a visit from my parents; my mom has been here for a week, and my dad arrived yesterday for a shorter but more meal-intensive visit. We hit Baja Burrito today for lunch, and I am off to meet them at DeSano pizza in a few minutes. My pal Scott Uyeda was here about two weeks ago, and we succeeded in eating out a lot, but failed to consume the six fantastic wines he brought along. Four are in the basement, awaiting his next visit.
I am working more, which is a shot in the arm to my finances, though I already miss the days of being home every night to, well, watch Girls with Caitlyn. And Jeopardy. And cook and read and go to bed early. These have been the bonuses of living the invalid life, and I guess the good news is that I am feeling good enough to go back to work.
The blog will remember the sweaty nights and the pain in the ass and the nausea, and I will leave it there. But there is a real sense, already, that I am going to miss the part of my life that consisted of me being home every night for about 2 1/2 months. The details might fade away, and I hope they do, but that is the chunk I am always going to remember.
Sometimes you blink and a month has gone and you don't really know where and then you get texts from good friends asking you how you are, you know, since you have not updated your blog in so long. They are texts and calls out of genuine concern, but they do succeed, whether they intend to or not, in guilting me into sitting down and updating the blog. My own guilt is heavy, yes, but theirs apparently does the trick even better.
During the month when I was not updating the blog, I thought about what to write about- what truths have I learned this month that those not in chemotherapy have been unlucky enough to miss out on? What can I share? I'm sure it has been something, but maybe it has yet to solidify as a pithy aphorism or life lesson. Maybe it's nothing. I don't know. But you know what is true today that was true then? My asshole still hurts- much worse than it did when I first made that crack to my mom.
So let this be a warning to anyone who may wish to stop reading now: THIS POST, FROM HERE ON DOWN, WILL MOSTLY BE ABOUT THE STATE OF MY ASSHOLE, AND OTHER PHYSICAL AILMENTS
You have been warned. Turn back now if you want no part of it.
I have tried dozens of times to start writing in a journal. I am no good at it. I am sure I could get better, but I never really know what to say? Do I make it just a play-by-play of my days, or do I talk about how I feel about everything? Do I write it as if one of my grandchildren will someday find it (and be bored enough with their own lack of goings-on to actually read through it), or do I write with the candor of private, ephemeral thoughts? I never know, so my writing always seems stilted and too formal, and I start sentences laboriously, with "Such is the..." and stuff like that.
But there is value to it. It was a either a wise man or my pal Sam Wooden who said something like this to me: We remember our lives in chunks. That is true. I remember that 2008 was a great year. I remember the same about 2006. But do I remember the day-to-day? The shitty days in the great years, or the best days of the forgettable years? Barely. I remember big chunks: the summer of '06, December '04, January '09- but don't press me on details. That's why a journal is a great idea, and that is why it's a bummer that I am a flop at maintaining one.
So my version of a journal is this blog, and a weekly entry; well, I guess that's my version of what would be, in an ideal practice, a daily one. And like I said, it's much better for me to write to someone, or someones, than to myself. But then, if these people exist, what do they want to read? Or what don't they want to read about? I am pretty sure that they don't want to read about my asshole and its current issues. Pretty darn sure.
But don't they want the truth? The real truth, and the down and dirty shit about what's going on? I think they do. No asshole talk, but gimme the truth- which is it?
To this day, I don't think I know what cancer feels like. I might have been a little tired over the past year or so, but I don't have my finger on any kind of acute "cancer" symptoms, other than the night sweats.
Chemotherapy- now that's some shit I do know. How sick and itchy you feel when the poison is going in, the dread you feel the night before and especially when you are trying to get out of bed too early in the morning to go to treatment. The instantaneous and fleeting and gagging taste of heparin in your mouth as they flush out your port.
The first week I learned what it was like have serious havoc played with your GI system- from constipation to stabbing stomach pains. Trying so hard to shit I could have read Gravity's Rainbow during one trip to the bathroom. Luckily, those symptoms have subsided, but one has risen, seemingly out of nowhere, to become King of my physical banes: a torn, bleeding anus.
The worst thing is, I have taken all the precautions prescribed to prevent such a thing: I eat oatmeal and fruit, I drink plenty of fluids, I take Senna-S, I take Miralax. I exercise. I do all the things the pros usually prescribe, assuming that the patient is a dehydrated, sedentary, obese, fruit-averse Krispy Kreme addict. If I was one of those, I might have some reasonable recourse. But I'm not, so I'm like what now?
One funny aside: I was looking online to address this problem, and one relatively reputable medical advice site warned "While it may be tempting to use a mirror or have a friend look..." I admit, I have thought about the mirror thing. But I would definitely- definitely- not classify it as "tempting."
So now I dread taking a shit. It's not that bad really considering it is just once or maybe twice a day, but the actual act is pure torture. At the beginning you trick yourself into thinking that maybe this time won't be so bad, and some aren't as bad as others, but most are excruciating. The best way I can describe it is that it's like you are shitting out something that has one or two sharp, craggy edges. I hope that made you cringe. It's the worst. You're lucky if it is quick. Sometimes the pain persists after you're done, and it's like you are carrying a lava rock in your asshole. I'm telling you, it is not fucking pleasant. And I told you you didn't want to read this.
The point of this is, I am constantly "aware" of my anus right now. It does not always hurt, but I can always feel it, which is not the normal blissful state of things. Really- you don't know how good you've got it when you're walking around, whistling maybe, with anything but your searing asshole on your mind.
That's my main medical gripe right now. After that is the neuropathy, which is numbness/tingling (and I would add /pain) to the extremities- my feet mostly, especially since I have been working on my feet about three nights a week. When the night is over it feels as if my feet have been filled with some super-dense, sensate, electrified goo, with intermittent regular old pain. This feeling makes sleeping tough. Hydrocodone makes it easier, fortunately, but hydrocodone also makes it easy to love hydrocodone, so I have been doing my best to avoid it whenever possible, substituting some remedies that are less "accepted" by the medical and legislative establishments of this state. Unfortunately, hydrododone has the edge re: preserving functionality; some medicines, even in modest, semi-Clintonian doses, reduce my cognitive abilities to the point that I am only to be trusted with the preparation and consumption of raisin bran and watching Girls on HBO GO.
I am happy to report that I am in the middle of a visit from my parents; my mom has been here for a week, and my dad arrived yesterday for a shorter but more meal-intensive visit. We hit Baja Burrito today for lunch, and I am off to meet them at DeSano pizza in a few minutes. My pal Scott Uyeda was here about two weeks ago, and we succeeded in eating out a lot, but failed to consume the six fantastic wines he brought along. Four are in the basement, awaiting his next visit.
I am working more, which is a shot in the arm to my finances, though I already miss the days of being home every night to, well, watch Girls with Caitlyn. And Jeopardy. And cook and read and go to bed early. These have been the bonuses of living the invalid life, and I guess the good news is that I am feeling good enough to go back to work.
The blog will remember the sweaty nights and the pain in the ass and the nausea, and I will leave it there. But there is a real sense, already, that I am going to miss the part of my life that consisted of me being home every night for about 2 1/2 months. The details might fade away, and I hope they do, but that is the chunk I am always going to remember.
If you're ever there, probably the best value and healthiest dish at the Vanderbilt University Medical Center Courtyard Cafe is the beans and rice plate at Baja Fresh. It's funny to see how unhealthy (though not undelicious, I must say) most of the options in this hospital food court are- like when you see a doctor smoking. Anyway, it just comes with beans and rice, but it's a good portion, and they'll give you chips and salsa with it, if you want. It reminds me of the football days at UCLA- it was right at the beginning of the Fresh-Mex trend, so we had a bunch of places that served grilled chicken burritos and stuff like that, as opposed to the refried-beans and broiled-cheese type of plates- at places like La Fiesta in Mountain View, CA- that I was used to, and I loved, as a kid. But this was the end of the '90s, and low-fat was the thing.
Baja Fresh was the king, and there was one right in Westwood and one at Olympic and Sawtelle, close to our apartment. We would always get the burrito "Dos Manos,"which was about 14" long, and probably boasted 400 calories in tortilla alone. You make a Dos Manos (I know because I watched many times) by overlapping two giant tortillas like a Venn diagram, then filling and folding it like you're making a normal burrito out of a bedsheet. The thing was sliced diagonally after it was wrapped tight, but each half still had to be held with two hands.
Eventually I became loyal to La Salsa- not because it was better, but because Baja Fresh was always so crowded. Baja Fresh probably was a little bit better, which is probably why it was more crowded, but La Salsa was not far behind, had parking, and had an extremely generous punch-card program, through which I was clocking one free burrito a week, practically. The La Salsa equivalent of the burrito Dos Manos was called El Champion. I have not been to a real Baja Fresh in a long time. The only one that I know of here in Nashville shut down, but I seriously doubt they make the Dos Manos anymore. I don't know why- it's not like just because I stopped eating 2000 calorie burritos the whole world did- but for some reason it seems unlikely. Come to think of it, given the size of the burritos at industry-leader Chipotle, it seems outdated to out one's self as a glutton by ordering the Dos Manos at Baja when you could just get an equally obscene (but "normal") burrito at Chipotle and fit right it with the crowd. On second thought, maybe I have not stopped eating 2000 calorie burritos.
The point is this: if you only have 4 bucks or so and are feeling misty for the 90s, the beans and rice plate at Baja Fresh is a good deal, in terms of calories, taste, and nostalgia.
After that submarine of a Chipotle burrito torpedoed my PET scan plans on Monday, I rebooked for Tuesday morning. Unfortunately, when you tell a hospital you want to come in as early as possible, they take you seriously and tell you to be there at 6:45am. I was willing to take what I could get, since I was afraid to go to my Wednesday appointment with my oncologist scanless- the circumstances would have been embarrassing to explain. Plus, the early time practically guaranteed that, barring some middle-of-the-night somnambulatory trip to the kitchen to make a Dagwood, I would probably make it to the PET scan in a fasting state.
I had a brief moment of dread today as I woke up- not unusual for an infusion day- but it quickly passed, since I knew I would have my scan results to discuss with the doctor. I was fully expecting some great news today, so I made breakfast and dashed off to work at 8, hoping to get a few hours in before my appointments began.
At the lab, the woman who checked me in was nice and sweet, but it crossed over into a little obnoxious as she tried to convince me- and convince is really the most apt word here- that the "lucky" things I have experienced with regard to my illness (e.g. critical illness insurance, etc.) have been the work of an interested and benevolently interventionist god. She just wanted to toss me a little seed, she said, and toss she did- though I am afraid it may have landed on some salty soil. She said I was blessed, and every time I was like "I was very lucky" or "I was very fortunate" she had this look on her face that was all like "SAY IT! SAY IT! SAY YOU WERE BLESSED AND I'LL BE HAPPY!" And I was all like "I better get out of here now or I'm gonna need a thesaurus to help me with more secular synonyms for lucky." But she said I was handsome, so she was alright. I might not go back to her window, though, because she mentioned something about some movies I should watch, and I don't think I can sit through The Grace Card or anything with a title like that.
I got in to see Dr. Morgan, and he told me that my scans were negative- which is positive. Sometimes he seems like he's in a rush, but I asked him whether I could see the scans. I guess he wasn't in too much of a hurry, because he said ok and sat down to walk me through the scans. This is what we saw:
At right is my PET scan from November- the black parts are things (organs and tumors) that are consuming energy. Some, namely the heart and kidneys, are supposed to be there, eating up glucose. Most of that shit is not supposed to be there, as is illustrated in the scan at the left, which is me yesterday. Just heart and kidneys eating glucose, bladder taking a little nibble, but no neoplasmic interlopers.
Look at that: fucking beautiful. So squeaky clean, any moron could read it and determine that he'd rather be the guy on the left than the guy on the right. Right now, I am mentally Photoshopping a steak, fries, and a glass of red wine into that vast, grey region below the kidneys.
So what does this mean for my treatment? Nothing. It means that it's working, but I still have 7.1 treatments left to go. I say that because I am 90% through my fifth infusion, and, strangely, getting pumped full of poison has never felt so good.
Baja Fresh was the king, and there was one right in Westwood and one at Olympic and Sawtelle, close to our apartment. We would always get the burrito "Dos Manos,"which was about 14" long, and probably boasted 400 calories in tortilla alone. You make a Dos Manos (I know because I watched many times) by overlapping two giant tortillas like a Venn diagram, then filling and folding it like you're making a normal burrito out of a bedsheet. The thing was sliced diagonally after it was wrapped tight, but each half still had to be held with two hands.
Eventually I became loyal to La Salsa- not because it was better, but because Baja Fresh was always so crowded. Baja Fresh probably was a little bit better, which is probably why it was more crowded, but La Salsa was not far behind, had parking, and had an extremely generous punch-card program, through which I was clocking one free burrito a week, practically. The La Salsa equivalent of the burrito Dos Manos was called El Champion. I have not been to a real Baja Fresh in a long time. The only one that I know of here in Nashville shut down, but I seriously doubt they make the Dos Manos anymore. I don't know why- it's not like just because I stopped eating 2000 calorie burritos the whole world did- but for some reason it seems unlikely. Come to think of it, given the size of the burritos at industry-leader Chipotle, it seems outdated to out one's self as a glutton by ordering the Dos Manos at Baja when you could just get an equally obscene (but "normal") burrito at Chipotle and fit right it with the crowd. On second thought, maybe I have not stopped eating 2000 calorie burritos.
The point is this: if you only have 4 bucks or so and are feeling misty for the 90s, the beans and rice plate at Baja Fresh is a good deal, in terms of calories, taste, and nostalgia.
After that submarine of a Chipotle burrito torpedoed my PET scan plans on Monday, I rebooked for Tuesday morning. Unfortunately, when you tell a hospital you want to come in as early as possible, they take you seriously and tell you to be there at 6:45am. I was willing to take what I could get, since I was afraid to go to my Wednesday appointment with my oncologist scanless- the circumstances would have been embarrassing to explain. Plus, the early time practically guaranteed that, barring some middle-of-the-night somnambulatory trip to the kitchen to make a Dagwood, I would probably make it to the PET scan in a fasting state.
I had a brief moment of dread today as I woke up- not unusual for an infusion day- but it quickly passed, since I knew I would have my scan results to discuss with the doctor. I was fully expecting some great news today, so I made breakfast and dashed off to work at 8, hoping to get a few hours in before my appointments began.
At the lab, the woman who checked me in was nice and sweet, but it crossed over into a little obnoxious as she tried to convince me- and convince is really the most apt word here- that the "lucky" things I have experienced with regard to my illness (e.g. critical illness insurance, etc.) have been the work of an interested and benevolently interventionist god. She just wanted to toss me a little seed, she said, and toss she did- though I am afraid it may have landed on some salty soil. She said I was blessed, and every time I was like "I was very lucky" or "I was very fortunate" she had this look on her face that was all like "SAY IT! SAY IT! SAY YOU WERE BLESSED AND I'LL BE HAPPY!" And I was all like "I better get out of here now or I'm gonna need a thesaurus to help me with more secular synonyms for lucky." But she said I was handsome, so she was alright. I might not go back to her window, though, because she mentioned something about some movies I should watch, and I don't think I can sit through The Grace Card or anything with a title like that.
I got in to see Dr. Morgan, and he told me that my scans were negative- which is positive. Sometimes he seems like he's in a rush, but I asked him whether I could see the scans. I guess he wasn't in too much of a hurry, because he said ok and sat down to walk me through the scans. This is what we saw:
Look at that: fucking beautiful. So squeaky clean, any moron could read it and determine that he'd rather be the guy on the left than the guy on the right. Right now, I am mentally Photoshopping a steak, fries, and a glass of red wine into that vast, grey region below the kidneys.
So what does this mean for my treatment? Nothing. It means that it's working, but I still have 7.1 treatments left to go. I say that because I am 90% through my fifth infusion, and, strangely, getting pumped full of poison has never felt so good.
Invasive burrito
I've got one sleeve rolled up, a needle in my arm and sterile tubing masking taped to my forearm- ready to be injected with contrast material for my CT scan. This should be the second scan of the day; I had a PET scan booked for 1 pm, but it didn't go down.
I got up early today, about ten to six, to take Caitlyn's mom to the airport. It was a beautiful, bright and cold morning in Nashville- the kind of morning that makes me wish that I got up that early more often. Anyway, I decided to take advantage of my fleeting go-getterism by going to work at about 7. There is always something to do there, and the earlier it is the more peaceful it tends to be. I was able to get a ton of inventory work done, swinging to the sweet, sweet sounds of On Point with Tom Ashbrook.
After my 11 o'clock meeting, I bolted to Chipotle, since I was starving after just having a small bowl of oatmeal for breakfast. I both devoured and savored my burrito, if that is possible, enjoying the warmth of the meal and the place in contrast to the twenty-five degree weather outside. By the time I finished, it was about 12:30, and time to make the short trip over to Vandy for Scanathon '14.
I checked in with the lady at the window and was issued my stack of paperwork and my orange bracelet. But I craved something: a little post-lunch, pre-scan chocolate. As I stood up, I asked the lady a very important question: where can I get a candy bar?
"Well you can't eat nothing before the PET scan." She did not answer my question of where I could get a candy bar. But she did answer the question that I turned over in my head last night: was I supposed to fast for the PET scan? I had one about ten weeks ago, but I couldn't recall whether fasting was necessary.
Yes, yes it was. And so I sabotaged the scan I have, honestly, been looking forward to for months. Better we caught it in the form of a conversation in the reception area than in invasive burrito form on the scan itself. So instead of getting both PET and CT scans today, I have to come back tomorrow at 6:45 (am, people) for the PET.
Early, yes, but it should be easy to fast for that one.
I got up early today, about ten to six, to take Caitlyn's mom to the airport. It was a beautiful, bright and cold morning in Nashville- the kind of morning that makes me wish that I got up that early more often. Anyway, I decided to take advantage of my fleeting go-getterism by going to work at about 7. There is always something to do there, and the earlier it is the more peaceful it tends to be. I was able to get a ton of inventory work done, swinging to the sweet, sweet sounds of On Point with Tom Ashbrook.
After my 11 o'clock meeting, I bolted to Chipotle, since I was starving after just having a small bowl of oatmeal for breakfast. I both devoured and savored my burrito, if that is possible, enjoying the warmth of the meal and the place in contrast to the twenty-five degree weather outside. By the time I finished, it was about 12:30, and time to make the short trip over to Vandy for Scanathon '14.
I checked in with the lady at the window and was issued my stack of paperwork and my orange bracelet. But I craved something: a little post-lunch, pre-scan chocolate. As I stood up, I asked the lady a very important question: where can I get a candy bar?
"Well you can't eat nothing before the PET scan." She did not answer my question of where I could get a candy bar. But she did answer the question that I turned over in my head last night: was I supposed to fast for the PET scan? I had one about ten weeks ago, but I couldn't recall whether fasting was necessary.
Yes, yes it was. And so I sabotaged the scan I have, honestly, been looking forward to for months. Better we caught it in the form of a conversation in the reception area than in invasive burrito form on the scan itself. So instead of getting both PET and CT scans today, I have to come back tomorrow at 6:45 (am, people) for the PET.
Early, yes, but it should be easy to fast for that one.
I learned something the other day. See I had accepted that the chemo doesn't "hit" me until a few days later; I know I mentioned that the first few days after a treatment are generally rosy and I am generally energetic, coherent, and hungry. Then it "hits" me, and everything takes a deep dip.
My chemo treatment is called ABVD: pretty standard for what I've got, and every capital letter stands for the the name of a drug (Adriamycin, Bleomycin, Vinblastine, and Dacarbazine). They do, however, give me more than four different "drips" or whatever you wanna call them, every time. One flushes me out at the end of the treatment- basically a saline thing. But before the ABVD flows, they give me what I had accepted as a pre-drug; I guess that when I am in the infusion chamber (not really a chamber) I am in compliant patient mode, and don't ask too many questions. But this time I did ask what it was, and a little bit of the mystery of my moods and medical condition has been unraveled. See, you don't smoke pot then get high two days later. You don't drink a few beers on Friday night because you want to have a good buzz for kickoff on Sunday. So why should my chemo treatment lie dormant for a few days before hitting me? Why do I run around like mad for a few days after each treatment, trying to work as much as I can, pay as many bills as I can, and exercise (and hopefully) and write as much as I can?
Because I am on 'roids- that's why. I run around like A-Rod for a couple of days because we're on similar nutritional plans for a couple of days. That makes a lot more sense, huh? It doesn't take a couple days for the chemo to set in, see? It takes a couple days for the steroids to wear off. I guess otherwise, sans juice, Chemo Patient would be a quivering, puking mess before the treatment was even over. I guess I am glad that they do it, then. I am proud to say that I did go to Tai Chi AND hit the gym on Friday, but I am embarrassed to say that I was only able to muster 0.8 pull-ups. That is not good, even for a guy who is not all jacked on steroids. But it does give me a little perspective on how good it must feel to be juiced without having been poisoned first. I'm sure that without the poisoning I could do at least- AT LEAST- one pull-up.
A few years ago, I made it my goal to do ten pull-ups on my birthday. Something happened in there somewhere, pre-Hodgkins, and I was knocked off course. Late this summer, though, I was able to do about six, which is pretty lame, I admit, but pretty good for me. Now, though, I have been diminished- I was a lean (for me) 195 pounds pre-wedding, but then got down to about 187 after not being able to eat very much after my first treatment. The good news is that weight has come back, thanks to largely indiscriminate eating. The bad news is that what was arm, chest, and shoulder muscle-weight has come back in a softer, paler, and less appetizing form (see previous entries about pizza, etc.). Yes, the weight is back, and that's good. But I am far from ripped and ready for summer. Luckily, summer is a ways away, and maybe I can hit the sweet spot where my muscle has come back, but I still have a Zac Efron level of chest hair. That would be sweet.
Caitlyn's folks, George and Kathy, rolled into town on Thursday, and since then there has been something on the stove and something being drilled, sawed, caulked, sanded, mowed, filed, lubricated, and/or hammered. Kathy is rarely without a recipe and George is rarely without tape measure and Home Depot shopping list- in fact, making George a to-do list before his visits is somewhat of a ritual in this house. I can't compete. All I can do is take care of easy things: fix brake lights in the car, for example, or make sure that there are no gaping holes in the walls- basically just do the things that, if unattended, would result in disappointed in-law head-shaking, and let George take it from there. As each day of home improvement begins, my primary duties are to keep the kitchen in ample supply of humor and strong coffee. I got George Tennessee slab and jowl bacon for Christmas, and the smell of that sizzling cured meat in the morning serves as my signal that it is coffee time.
There's a place called Papa Boudreaux's out in Santa Fe (pronounced fee, y'all)- it's about an hour down the Natchez Trace from Nashville, and it's a creole dive run by an expatriate Louisianan and his family. Decor on the cinderblock walls consists of LSU pennants, quirky signs ("In 1897, on this spot, nothing happened," etc.), and photos of Terry Bradshaw. It's kinda famous (here), kinda hard to find, and the food is great. Caitlyn had gone once, but my first time was at their Franklin outpost, which was ok, but I felt like I was missing something big- missing whatever it was about the original that made people want to drive an hour out to Santa Fe to see, feel, and eat . It was like if CBGB opened up a second location at the Mall of America, the Franklin location felt to me.
Caitlyn took us out there for dinner on Saturday, and the original Papa's does not disappoint, as long as you know what you're getting into. Their special was crawfish etouffe on top of fried green tomatoes, with a side of their crawfish mac and cheese and chilled boiled shrimp. The gumbo was served over rice and chock full of a zoo of animal parts. And the red beans and rice- oh man. Kielbasa, andouille sausage, and thick, disintegrating chunks of tasso ham. They open at four, and we got there at about 5:30. The guy asked us whether we had reservations, which surprised me, because a cash-only, wait-outside-for-your-table shack seemed as likely to take reservation as an Orange Julius. Luckily, hour early-bird arrival got us a spot in the not even half-full restaurant, though we did have to wait outside for about 5 minutes while they prepared the table. It must be their thing, the making the customers wait outside. Makes the crawfish that much sweeter, and the beans and rice that much steamier.
Now that I am my normal weight again, I am trying to eat better, though the trip to Papa Boudreaux's may seem counter to that statement. However, my first step is to eliminate the crap I have been eating- processed cheese, pizzas from places with brightly colored boxes, Campbell's soup- things like that that I had to eat because once upon a time they were the only things I could stomach. Now I can stomach more, so I can ditch that stuff. I'm sure I will taper down to lower fat stuff- get down to the healthy stuff I was eating before I got sick (though it is worth it to note that all that healthy stuff did not prevent me from getting sick, did it?). For now, though, quality foods are fair game- even tasso.
On Sunday the girls went to see Normal Rockwell (not the man- his works) at the Frist, and George and I watched the Broncos more or less systematically dismantle the Patriots. Then the Niners game. In short, football is now dead to me until August 30, when UCLA plays at UVA- a game we may try and drive out to Charlottesville for. Should that be "a game for which we may try and drive out to Charlottesville?" That may be correct, but it sounds pretty prissy for talking about going to a football game. I am sticking with version 1. Anyway, that is but one of the many things I look forward to doing when I am cured and feeling good again. In fact, it is a bit of a pastime of mine now to think about all the things I want to do again once I can really do and enjoy them. Drink wine. Ride my bike to Percy Warner and run trails until I am completely exhausted- in the good way that I can barely remember. Sit and write comfortably. Mow the fucking lawn, even. Sweat.
Work is not a part of this fantasy, you may have noticed. It's for poor people. But I have been doing just enough of it to keep me afloat, which is a novel concept: just enough work to keep from going broke. I guess some people live like that all the time, by choice or necessity. I don't have much of a choice right now, but one thing that is apparent is that, unless you really have to- I mean really really have to- work is not worth worrying too much about, because right now I am thinking about much more important things.
P.S. This http://livingwithmcl.com/BitterPill.pdf is an article by Steven Brill, published in Time in early 2013. It's a long read- about 30 pages- but is such a valuable insight into our health care system that I really recommend investing some time in it. It is not political, and was enough to make me simultaneously disgusted with the system and relieved that, in this fucked system, I am one of the lucky (ha!) ones.
My chemo treatment is called ABVD: pretty standard for what I've got, and every capital letter stands for the the name of a drug (Adriamycin, Bleomycin, Vinblastine, and Dacarbazine). They do, however, give me more than four different "drips" or whatever you wanna call them, every time. One flushes me out at the end of the treatment- basically a saline thing. But before the ABVD flows, they give me what I had accepted as a pre-drug; I guess that when I am in the infusion chamber (not really a chamber) I am in compliant patient mode, and don't ask too many questions. But this time I did ask what it was, and a little bit of the mystery of my moods and medical condition has been unraveled. See, you don't smoke pot then get high two days later. You don't drink a few beers on Friday night because you want to have a good buzz for kickoff on Sunday. So why should my chemo treatment lie dormant for a few days before hitting me? Why do I run around like mad for a few days after each treatment, trying to work as much as I can, pay as many bills as I can, and exercise (and hopefully) and write as much as I can?
Because I am on 'roids- that's why. I run around like A-Rod for a couple of days because we're on similar nutritional plans for a couple of days. That makes a lot more sense, huh? It doesn't take a couple days for the chemo to set in, see? It takes a couple days for the steroids to wear off. I guess otherwise, sans juice, Chemo Patient would be a quivering, puking mess before the treatment was even over. I guess I am glad that they do it, then. I am proud to say that I did go to Tai Chi AND hit the gym on Friday, but I am embarrassed to say that I was only able to muster 0.8 pull-ups. That is not good, even for a guy who is not all jacked on steroids. But it does give me a little perspective on how good it must feel to be juiced without having been poisoned first. I'm sure that without the poisoning I could do at least- AT LEAST- one pull-up.
A few years ago, I made it my goal to do ten pull-ups on my birthday. Something happened in there somewhere, pre-Hodgkins, and I was knocked off course. Late this summer, though, I was able to do about six, which is pretty lame, I admit, but pretty good for me. Now, though, I have been diminished- I was a lean (for me) 195 pounds pre-wedding, but then got down to about 187 after not being able to eat very much after my first treatment. The good news is that weight has come back, thanks to largely indiscriminate eating. The bad news is that what was arm, chest, and shoulder muscle-weight has come back in a softer, paler, and less appetizing form (see previous entries about pizza, etc.). Yes, the weight is back, and that's good. But I am far from ripped and ready for summer. Luckily, summer is a ways away, and maybe I can hit the sweet spot where my muscle has come back, but I still have a Zac Efron level of chest hair. That would be sweet.
Caitlyn's folks, George and Kathy, rolled into town on Thursday, and since then there has been something on the stove and something being drilled, sawed, caulked, sanded, mowed, filed, lubricated, and/or hammered. Kathy is rarely without a recipe and George is rarely without tape measure and Home Depot shopping list- in fact, making George a to-do list before his visits is somewhat of a ritual in this house. I can't compete. All I can do is take care of easy things: fix brake lights in the car, for example, or make sure that there are no gaping holes in the walls- basically just do the things that, if unattended, would result in disappointed in-law head-shaking, and let George take it from there. As each day of home improvement begins, my primary duties are to keep the kitchen in ample supply of humor and strong coffee. I got George Tennessee slab and jowl bacon for Christmas, and the smell of that sizzling cured meat in the morning serves as my signal that it is coffee time.
There's a place called Papa Boudreaux's out in Santa Fe (pronounced fee, y'all)- it's about an hour down the Natchez Trace from Nashville, and it's a creole dive run by an expatriate Louisianan and his family. Decor on the cinderblock walls consists of LSU pennants, quirky signs ("In 1897, on this spot, nothing happened," etc.), and photos of Terry Bradshaw. It's kinda famous (here), kinda hard to find, and the food is great. Caitlyn had gone once, but my first time was at their Franklin outpost, which was ok, but I felt like I was missing something big- missing whatever it was about the original that made people want to drive an hour out to Santa Fe to see, feel, and eat . It was like if CBGB opened up a second location at the Mall of America, the Franklin location felt to me.
Caitlyn took us out there for dinner on Saturday, and the original Papa's does not disappoint, as long as you know what you're getting into. Their special was crawfish etouffe on top of fried green tomatoes, with a side of their crawfish mac and cheese and chilled boiled shrimp. The gumbo was served over rice and chock full of a zoo of animal parts. And the red beans and rice- oh man. Kielbasa, andouille sausage, and thick, disintegrating chunks of tasso ham. They open at four, and we got there at about 5:30. The guy asked us whether we had reservations, which surprised me, because a cash-only, wait-outside-for-your-table shack seemed as likely to take reservation as an Orange Julius. Luckily, hour early-bird arrival got us a spot in the not even half-full restaurant, though we did have to wait outside for about 5 minutes while they prepared the table. It must be their thing, the making the customers wait outside. Makes the crawfish that much sweeter, and the beans and rice that much steamier.
Now that I am my normal weight again, I am trying to eat better, though the trip to Papa Boudreaux's may seem counter to that statement. However, my first step is to eliminate the crap I have been eating- processed cheese, pizzas from places with brightly colored boxes, Campbell's soup- things like that that I had to eat because once upon a time they were the only things I could stomach. Now I can stomach more, so I can ditch that stuff. I'm sure I will taper down to lower fat stuff- get down to the healthy stuff I was eating before I got sick (though it is worth it to note that all that healthy stuff did not prevent me from getting sick, did it?). For now, though, quality foods are fair game- even tasso.
On Sunday the girls went to see Normal Rockwell (not the man- his works) at the Frist, and George and I watched the Broncos more or less systematically dismantle the Patriots. Then the Niners game. In short, football is now dead to me until August 30, when UCLA plays at UVA- a game we may try and drive out to Charlottesville for. Should that be "a game for which we may try and drive out to Charlottesville?" That may be correct, but it sounds pretty prissy for talking about going to a football game. I am sticking with version 1. Anyway, that is but one of the many things I look forward to doing when I am cured and feeling good again. In fact, it is a bit of a pastime of mine now to think about all the things I want to do again once I can really do and enjoy them. Drink wine. Ride my bike to Percy Warner and run trails until I am completely exhausted- in the good way that I can barely remember. Sit and write comfortably. Mow the fucking lawn, even. Sweat.
Work is not a part of this fantasy, you may have noticed. It's for poor people. But I have been doing just enough of it to keep me afloat, which is a novel concept: just enough work to keep from going broke. I guess some people live like that all the time, by choice or necessity. I don't have much of a choice right now, but one thing that is apparent is that, unless you really have to- I mean really really have to- work is not worth worrying too much about, because right now I am thinking about much more important things.
P.S. This http://livingwithmcl.com/BitterPill.pdf is an article by Steven Brill, published in Time in early 2013. It's a long read- about 30 pages- but is such a valuable insight into our health care system that I really recommend investing some time in it. It is not political, and was enough to make me simultaneously disgusted with the system and relieved that, in this fucked system, I am one of the lucky (ha!) ones.
Well, it's routine now; start feeling pretty good about nine days after treatment, with a steady trajectory up, up, up- that is, until the Monday before treatment, when I start thinking about sitting there in the as-comfortable-as-they-could-make-it infusion room, planting myself in the not-bad-for-industrial-grade recliner, and being poisoned for three hours. Then I feel good for a few days, until the chemo kicks in. It's pretty boring now, really, so I won't describe the little ups and downs. I will tell you this, though: my palate is fucked.
Just like it's the little differences that distinguish a U.S. McDonald's from a European one, same with what makes this treatment maddening.The bigger things? No big deal. No hair? No problem. So I had to buy a 7-day pill caddy to manage my many daily medications- so what? These are pretty big lifestyle changes that are just normal now, so they seem pretty small. But the little things are big now, and the biggest little thing is that my palate is fucked.
But it's not the same every day- it is different every day, so it is unpredictable. Most notably, everything has been turned down, and tasting food or drink is like listening to headphones with a wool cap pulled over my ears. And strangely, bland is what sounds good during this time. Turkey sandwiches with American cheese are key. Mass-produced soups. Chipotle burritos, stripped of their most flavorful elements- basically, the burritos I would have ordered as a 13 year-old. These are the things that are keeping me going right now, which is a bummer, because some of the healthiest things are stomach-turning. Greens. Garlic. Most cooked vegetables. Things I would normally love, and things that I know would be good for me, are repellent.
So when the sound is turned down and I am not really hungry I just kind of go with it and appease my prudish palate with yawn-worthy foods. But then, as the chemo wears off a bit more and my appetite comes back to life, I want the flavor cranked to 11, even though it will only taste like a 7 to me. Last weekend a restaurateur neighbor invited me to one of his places for dinner, which coincided with a surge in my appetite- I gladly accepted, and looked forward to it all day. French onion soup. Cool, crispy salad with a tangy vinaigrette. And a bone-in ribeye the size of a catcher's mitt. This was flavor country, and it was great- but for me, it was more like watching a 3-D IMAX Smell-O-vision movie about flavor country; it was as close to the real thing as humanly and technologically possible, but I still knew that my tablemates were tasting a little extra element that I was missing out on. Their gruyere was a little earthier, their onions a little sweeter, and their beef a little beefier than mine. Someday again, I thought, I will taste like they taste. And I will not take it for granted.
And the wine: Flowers pinot noir at this dinner- a wine I would normally be excited about. A wine I was excited about, especially since I actually desired to have a glass of wine for the first time in months. It smelled glorious, but right now my mouth is where glorious flavors go to die. It was the first time since a loud and drunken twenty-two year old Pete Holland swilled Opus One with his friend's wealthy (and generous and tolerant) father that I would say a wine was "wasted" on me.
So I have abstained- though I am very appreciative of the lakes of wine that have been sent our way since my diagnosis. They are stacking up, sadly, but not going to waste; they'll just have to wait a while until I can give them my full attention.
Luckily, pizza has been there for me. Always has, and presumably always will. I stayed away from it after the first treatment, having been advised to steer clear of favorite foods around treatment time, as a bout with nausea can trigger a lifelong aversion. One night though, a few weeks into treatment, I was debating what to make for dinner when I realized that I wanted a pizza. I needed a pizza. And I leaned on Domino's, who has been there for me since they opened the now-defunct location at Loyola Corners in Los Altos in the late 80s. I ordered online; absent the defining phone call, it felt like the pie just magically showed up at our door. I also magically made it disappear faster than a pack of ravenous weasels. The experience was so positive, so gratifying, that I made the same order two days later for lunch. Equally satisfying.
I've been out of the pizza-industrial complex, I realized as I navigated the website (not totally out- I just am one of those snobs who always patronizes the little neighborhood pizza place). Did you know you can "track" your pizza on the Domino's site, from prep to oven to delivery? Or send the staff a message, like "Keep up the good work" or "You're my pizza hero-" seriously. Also, you can save your favorite pie, which makes the ordering process disturbingly frictionless- it's the web-based pizza equivalent of the bartender pouring you your "usual" when she sees you walk in, so it's sitting there in front of you when you belly up. It's not a good thing; just like a gambler could benefit from the moment of pause that another trip to the ATM provides, some of us need the cumbersome topping- and crust-selecting rigamarole to give our minds the time to decide that hey, maybe we could just make a sandwich here. It might save us $12 plus tip, as well as several points of LDL. That said, you can bet that dominos.com is quite aware of my home address, debit card number, and my much loved large Brooklyn-style crust with ham.
One other observation, relating to food. Size inflation is real, and we have all known that for years. Today's small soda is yesteryear's large- this has been repeated ad nauseum in the media. And it's a chicken/egg issue; are we so disgustingly fat because the portion sizes have increased so much, or do we demand larger portions to satisfy our disgustingly outsized cravings? Who knows. But nowhere is this inflation so glaring as at the local multiplex, where a small soda is now, no shit, the size of an original Big Gulp. Really. And they call it a small, apparently unaware that words mean things- specific things. I suggested that they change the name to "smallest," which would at least be technically true, given the tubbiness of their other offerings. Only in some kind of reverse Lilliput could the "small" actually be considered to be small. This is probably not news to anyone- I go to the movies a decent amount, but I guess I have been avoiding the concession stand for the last ten years or so, preferring instead to smuggle in half-bottles of red wine. I now see the error of my ways; although their grip on size-related terminology has loosened considerably, the movie concession stand remains a stronghold of all things cold, salty, "buttery," and delicious.
So fries are being Supersized and sodas are getting oceanic, but one industry is going against that trend: the pizza business, strangely. It's true. A large pizza at Domino's is much smaller than it used to be- I know because back in the day I would not have ordered a large for myself. And if I did, there would surely be a few slices to eat the next day, or later that night. But now I can get a "large" and dispatch it all by myself, easily. The large is 14", according to the website, and I don't like to get technical when it comes to pizza sizes- like Potter Stewart, I know a large pizza when I see one. Shouldn't a large pie be not too much smaller than a trash can lid? Shouldn't it, when delivered to a table, dwarf everything around it? Shouldn't a large pie be a little too much for any normal eater to take down? In my opinion, yes. So I am not suggesting that we need to regulate portion-size terminology like we regulate "organic" and "too hot for tv;" but I want my small sodas to be manageable and I want my large pizzas hanging off the table. Is that too much to ask?
Just like it's the little differences that distinguish a U.S. McDonald's from a European one, same with what makes this treatment maddening.The bigger things? No big deal. No hair? No problem. So I had to buy a 7-day pill caddy to manage my many daily medications- so what? These are pretty big lifestyle changes that are just normal now, so they seem pretty small. But the little things are big now, and the biggest little thing is that my palate is fucked.
But it's not the same every day- it is different every day, so it is unpredictable. Most notably, everything has been turned down, and tasting food or drink is like listening to headphones with a wool cap pulled over my ears. And strangely, bland is what sounds good during this time. Turkey sandwiches with American cheese are key. Mass-produced soups. Chipotle burritos, stripped of their most flavorful elements- basically, the burritos I would have ordered as a 13 year-old. These are the things that are keeping me going right now, which is a bummer, because some of the healthiest things are stomach-turning. Greens. Garlic. Most cooked vegetables. Things I would normally love, and things that I know would be good for me, are repellent.
So when the sound is turned down and I am not really hungry I just kind of go with it and appease my prudish palate with yawn-worthy foods. But then, as the chemo wears off a bit more and my appetite comes back to life, I want the flavor cranked to 11, even though it will only taste like a 7 to me. Last weekend a restaurateur neighbor invited me to one of his places for dinner, which coincided with a surge in my appetite- I gladly accepted, and looked forward to it all day. French onion soup. Cool, crispy salad with a tangy vinaigrette. And a bone-in ribeye the size of a catcher's mitt. This was flavor country, and it was great- but for me, it was more like watching a 3-D IMAX Smell-O-vision movie about flavor country; it was as close to the real thing as humanly and technologically possible, but I still knew that my tablemates were tasting a little extra element that I was missing out on. Their gruyere was a little earthier, their onions a little sweeter, and their beef a little beefier than mine. Someday again, I thought, I will taste like they taste. And I will not take it for granted.
And the wine: Flowers pinot noir at this dinner- a wine I would normally be excited about. A wine I was excited about, especially since I actually desired to have a glass of wine for the first time in months. It smelled glorious, but right now my mouth is where glorious flavors go to die. It was the first time since a loud and drunken twenty-two year old Pete Holland swilled Opus One with his friend's wealthy (and generous and tolerant) father that I would say a wine was "wasted" on me.
So I have abstained- though I am very appreciative of the lakes of wine that have been sent our way since my diagnosis. They are stacking up, sadly, but not going to waste; they'll just have to wait a while until I can give them my full attention.
Luckily, pizza has been there for me. Always has, and presumably always will. I stayed away from it after the first treatment, having been advised to steer clear of favorite foods around treatment time, as a bout with nausea can trigger a lifelong aversion. One night though, a few weeks into treatment, I was debating what to make for dinner when I realized that I wanted a pizza. I needed a pizza. And I leaned on Domino's, who has been there for me since they opened the now-defunct location at Loyola Corners in Los Altos in the late 80s. I ordered online; absent the defining phone call, it felt like the pie just magically showed up at our door. I also magically made it disappear faster than a pack of ravenous weasels. The experience was so positive, so gratifying, that I made the same order two days later for lunch. Equally satisfying.
I've been out of the pizza-industrial complex, I realized as I navigated the website (not totally out- I just am one of those snobs who always patronizes the little neighborhood pizza place). Did you know you can "track" your pizza on the Domino's site, from prep to oven to delivery? Or send the staff a message, like "Keep up the good work" or "You're my pizza hero-" seriously. Also, you can save your favorite pie, which makes the ordering process disturbingly frictionless- it's the web-based pizza equivalent of the bartender pouring you your "usual" when she sees you walk in, so it's sitting there in front of you when you belly up. It's not a good thing; just like a gambler could benefit from the moment of pause that another trip to the ATM provides, some of us need the cumbersome topping- and crust-selecting rigamarole to give our minds the time to decide that hey, maybe we could just make a sandwich here. It might save us $12 plus tip, as well as several points of LDL. That said, you can bet that dominos.com is quite aware of my home address, debit card number, and my much loved large Brooklyn-style crust with ham.
One other observation, relating to food. Size inflation is real, and we have all known that for years. Today's small soda is yesteryear's large- this has been repeated ad nauseum in the media. And it's a chicken/egg issue; are we so disgustingly fat because the portion sizes have increased so much, or do we demand larger portions to satisfy our disgustingly outsized cravings? Who knows. But nowhere is this inflation so glaring as at the local multiplex, where a small soda is now, no shit, the size of an original Big Gulp. Really. And they call it a small, apparently unaware that words mean things- specific things. I suggested that they change the name to "smallest," which would at least be technically true, given the tubbiness of their other offerings. Only in some kind of reverse Lilliput could the "small" actually be considered to be small. This is probably not news to anyone- I go to the movies a decent amount, but I guess I have been avoiding the concession stand for the last ten years or so, preferring instead to smuggle in half-bottles of red wine. I now see the error of my ways; although their grip on size-related terminology has loosened considerably, the movie concession stand remains a stronghold of all things cold, salty, "buttery," and delicious.
So fries are being Supersized and sodas are getting oceanic, but one industry is going against that trend: the pizza business, strangely. It's true. A large pizza at Domino's is much smaller than it used to be- I know because back in the day I would not have ordered a large for myself. And if I did, there would surely be a few slices to eat the next day, or later that night. But now I can get a "large" and dispatch it all by myself, easily. The large is 14", according to the website, and I don't like to get technical when it comes to pizza sizes- like Potter Stewart, I know a large pizza when I see one. Shouldn't a large pie be not too much smaller than a trash can lid? Shouldn't it, when delivered to a table, dwarf everything around it? Shouldn't a large pie be a little too much for any normal eater to take down? In my opinion, yes. So I am not suggesting that we need to regulate portion-size terminology like we regulate "organic" and "too hot for tv;" but I want my small sodas to be manageable and I want my large pizzas hanging off the table. Is that too much to ask?
What do they do?
When I am not thinking what do I do? in this situation I am in; do I work, do I eat, how do I sleep, how do I get tired enough to sleep when I don't have enough energy to get out and do anything... when I am not thinking that, I think what do other people do?
After my first treatment, I was too worried about how other people who have gone through this felt and what they did- did they work, did they get sick, could they eat, could they sleep. I tried to compare what I was doing to what I thought I was supposed to be doing, which was a bad idea. I tried to make a predictive work schedule, based on what I heard would be my good and bad days; another bad idea. I appreciate all the offers I have received; all the chances to reach out to friends of friends who have had the same diagnosis, but I have not taken advantage of them, and here's why: because the diagnosis is the same, but nothing else is, and the more I hear about how someone else responds to treatment the more I wonder whether I am somehow wrong in how I respond. The truth is, I feel how I feel, and there's not much I can do about that.
But this has also led me to think about what others do in kind of a practical, grateful way. True, I feel genuinely unlucky that I have cancer- no two ways about that. But I have health insurance- good health insurance. I had some critical illness insurance, and they paid up (I am still in shock over that). I have a warm home and a great wife and family and neighbors who bring me food and gift cards for Smoothie King and give me rides to places I need to go. I have a job that lets me do what I can, and understands that there are some things I am not up to right now. And I can't help but wonder, what do people that don't have these things do?
Take insurance- my bills, up TO the diagnosis, total about $30,000. Luckily, because of the health plan I am on, I am on the hook for a mere fraction of that- a paltry fraction, when it comes down to it, and I have a well-defined out-of-pocket maximum. Unfortunately, since the treatment will span 2013 and 2014, I will be on the hook for my maximum twice, but considering what they total bills are sure to be, this is a very manageable sum. But if it were much more, I would find myself in the position of having to borrow money for my own treatment.
So what do people that don't have that do? I wonder, and that's when I feel fortunate. What if I were on the hook for 1/3, or 1/2? I truly don't know what I would do. Honestly, if I had a health plan that charged much more than a $20 co-payment for an office visit, there is a good chance that I would have continued to ignore my first symptoms and I still would not be diagnosed. Then, instead of a shrinking (hopefully) mass in my chest, I would have one that is growing unchecked, right now. I would be walking around, the cancer growing and spreading, until it manifested itself in a more urgent and frightening way. It is scary, when I think about it like that.
People talk about "lifestyle" diseases; infirmities that are by and large a product of the choices one makes in his life, and are therefore thought of as avoidable. Since they are avoidable, the sufferers of these diseases are generally regarded as deserving of them- they made the choices, and now they are dealing with the consequences. AIDS is thought of as a lifestyle disease. Lung cancer, for smokers, is a lifestyle disease. And for a long time, I have been so wrapped up in the belief that we can control everything through diet and exercise that I have thought of so many more diseases- obesity, cancer, to name but a few- as lifestyle diseases. And of course I felt like I would never be afflicted by one of these.
Well, goes to show what I know. Sure, I probably won't ever get lung or liver cancer, but the wheel still spins, and we all are in the game- whether we want to be or not.
The timing of this has been interesting, since I follow the news very closely and there has been so much rancor over Obamacare and its implementation. There are decent arguments on both sides I suppose (though the "discussions" are rarely decent), but what really gets me is when they talk about healthcare like it's just another consumer product that you can choose to buy or choose not to buy- like it's a car, or a tv, or an iPhone. Some people want it, and that's fine they say, but some people don't- and that's fine too, and we should just let them go without it.
That is fine, too- until they get sick. Because when they get sick, do these people say "well, this is the choice I've made, so I guess I will just sit here and die." No. They go get treated. They rack up bills like the one I am racking up. And when there is no insurance company to pay those bills, they get sent to the patient. And when they can't pay them, they are "free riders," and we all pay them, and it's medical welfare. And though the idea may get applause at political debates, we don't just let people die because they did not have or could not afford health insurance- and that is a good thing. We are not talking about tvs or iPhones here- no matter what we do, we don't get to choose when we enter this market. So let the debate rage on, but let's stop using that false analogy.
So I might feel a little sorry for myself from time to time, until I start thinking what do other people do? What do they do when they don't have insurance or a decent job? What do they do when they don't have family who will drop everything just to come out and make life easier for a while? What do they do when they don't have a loving and sweet- but not babying- wife? What do they do when they don't have friends and neighbors who call and come over and cook and drive and do all the things that they can't do? Well, I don't know what they do- and that's how I know how lucky I am.
After my first treatment, I was too worried about how other people who have gone through this felt and what they did- did they work, did they get sick, could they eat, could they sleep. I tried to compare what I was doing to what I thought I was supposed to be doing, which was a bad idea. I tried to make a predictive work schedule, based on what I heard would be my good and bad days; another bad idea. I appreciate all the offers I have received; all the chances to reach out to friends of friends who have had the same diagnosis, but I have not taken advantage of them, and here's why: because the diagnosis is the same, but nothing else is, and the more I hear about how someone else responds to treatment the more I wonder whether I am somehow wrong in how I respond. The truth is, I feel how I feel, and there's not much I can do about that.
But this has also led me to think about what others do in kind of a practical, grateful way. True, I feel genuinely unlucky that I have cancer- no two ways about that. But I have health insurance- good health insurance. I had some critical illness insurance, and they paid up (I am still in shock over that). I have a warm home and a great wife and family and neighbors who bring me food and gift cards for Smoothie King and give me rides to places I need to go. I have a job that lets me do what I can, and understands that there are some things I am not up to right now. And I can't help but wonder, what do people that don't have these things do?
Take insurance- my bills, up TO the diagnosis, total about $30,000. Luckily, because of the health plan I am on, I am on the hook for a mere fraction of that- a paltry fraction, when it comes down to it, and I have a well-defined out-of-pocket maximum. Unfortunately, since the treatment will span 2013 and 2014, I will be on the hook for my maximum twice, but considering what they total bills are sure to be, this is a very manageable sum. But if it were much more, I would find myself in the position of having to borrow money for my own treatment.
So what do people that don't have that do? I wonder, and that's when I feel fortunate. What if I were on the hook for 1/3, or 1/2? I truly don't know what I would do. Honestly, if I had a health plan that charged much more than a $20 co-payment for an office visit, there is a good chance that I would have continued to ignore my first symptoms and I still would not be diagnosed. Then, instead of a shrinking (hopefully) mass in my chest, I would have one that is growing unchecked, right now. I would be walking around, the cancer growing and spreading, until it manifested itself in a more urgent and frightening way. It is scary, when I think about it like that.
People talk about "lifestyle" diseases; infirmities that are by and large a product of the choices one makes in his life, and are therefore thought of as avoidable. Since they are avoidable, the sufferers of these diseases are generally regarded as deserving of them- they made the choices, and now they are dealing with the consequences. AIDS is thought of as a lifestyle disease. Lung cancer, for smokers, is a lifestyle disease. And for a long time, I have been so wrapped up in the belief that we can control everything through diet and exercise that I have thought of so many more diseases- obesity, cancer, to name but a few- as lifestyle diseases. And of course I felt like I would never be afflicted by one of these.
Well, goes to show what I know. Sure, I probably won't ever get lung or liver cancer, but the wheel still spins, and we all are in the game- whether we want to be or not.
The timing of this has been interesting, since I follow the news very closely and there has been so much rancor over Obamacare and its implementation. There are decent arguments on both sides I suppose (though the "discussions" are rarely decent), but what really gets me is when they talk about healthcare like it's just another consumer product that you can choose to buy or choose not to buy- like it's a car, or a tv, or an iPhone. Some people want it, and that's fine they say, but some people don't- and that's fine too, and we should just let them go without it.
That is fine, too- until they get sick. Because when they get sick, do these people say "well, this is the choice I've made, so I guess I will just sit here and die." No. They go get treated. They rack up bills like the one I am racking up. And when there is no insurance company to pay those bills, they get sent to the patient. And when they can't pay them, they are "free riders," and we all pay them, and it's medical welfare. And though the idea may get applause at political debates, we don't just let people die because they did not have or could not afford health insurance- and that is a good thing. We are not talking about tvs or iPhones here- no matter what we do, we don't get to choose when we enter this market. So let the debate rage on, but let's stop using that false analogy.
So I might feel a little sorry for myself from time to time, until I start thinking what do other people do? What do they do when they don't have insurance or a decent job? What do they do when they don't have family who will drop everything just to come out and make life easier for a while? What do they do when they don't have a loving and sweet- but not babying- wife? What do they do when they don't have friends and neighbors who call and come over and cook and drive and do all the things that they can't do? Well, I don't know what they do- and that's how I know how lucky I am.
If I go back and read the posts that I wrote leading up to my first treatment- well, that says it all. So chipper, so matter-of-fact- almost like I had not been diagnosed with cancer. I talked about my biopsies and showed my scars. I took it in stride when the doctor told me my treatment would be six months of chemotherapy followed by radiation. I relayed those facts to those that wanted to know them, with little emotion.They told me I had Hodgkins, and I believed them, and I told everyone and they told me what they were going to do to treat it. I mean, even three days after my first infusion, I was telling the whole story of my diagnosis to some interested (they assured me) co-workers- prattling on about it, maybe, about the whole crazy thing and how lucky we were to catch it.
I never said why me? because I don't believe in that stuff. The universe does not know my name, and I don't believe there's someone up there trying to teach me something, though I have learned things already- valuable things- and will surely learn many more. When folks would ask, I'd tell them that hey, this is the hand I've been dealt, so we're going to deal with it. I said it and meant it, and I'm sure it sounded positive but I had no idea what I was talking about. I acknowledged the reality, but they were just words.
I never denied. But when we talk about "processing" things or letting them "sink in," what are we really talking about? Or when we say something hasn't "hit" us yet? I guess for me, it means it has not made us suffer yet.
Well, reality is here. I have processed this now. It has hit me. Like a piano from a third-story window, it has hit me. I was flattened by the chemo the Saturday after the the infusion. Sunday, still flat.
And the next week came and crawled by, and I could barely lift a finger. I did not sleep for two nights because of the abdominal pains. There was no relief to be had- Caitlyn took me in to the doctor on Wednesday, and they prescribed remedies that would have me on my feet again by the weekend. Now, as I go into my second treatment, I am feeling even better. But the last two weeks have shown me the road I am on- by burying my face is the asphalt.
But at least now I know. It's real now.
I was going to write longer, but I am in the infusion clinic right now and am starting to think "funny."
Quick notes:
My mom is here now- got here on Saturday and is staying til Christmas, and we've been having a great time.
Hair mystery solved: it's on its way out. Beard still a question mark.
I am working, doing wine stuff. Not working at night right now.
Good neighbors are great to have, but good retired neighbors are worth their weight in gold. Whatcha doing? Nothing. Can you drive me to the dentist? Sure!
I never said why me? because I don't believe in that stuff. The universe does not know my name, and I don't believe there's someone up there trying to teach me something, though I have learned things already- valuable things- and will surely learn many more. When folks would ask, I'd tell them that hey, this is the hand I've been dealt, so we're going to deal with it. I said it and meant it, and I'm sure it sounded positive but I had no idea what I was talking about. I acknowledged the reality, but they were just words.
I never denied. But when we talk about "processing" things or letting them "sink in," what are we really talking about? Or when we say something hasn't "hit" us yet? I guess for me, it means it has not made us suffer yet.
Well, reality is here. I have processed this now. It has hit me. Like a piano from a third-story window, it has hit me. I was flattened by the chemo the Saturday after the the infusion. Sunday, still flat.
And the next week came and crawled by, and I could barely lift a finger. I did not sleep for two nights because of the abdominal pains. There was no relief to be had- Caitlyn took me in to the doctor on Wednesday, and they prescribed remedies that would have me on my feet again by the weekend. Now, as I go into my second treatment, I am feeling even better. But the last two weeks have shown me the road I am on- by burying my face is the asphalt.
But at least now I know. It's real now.
I was going to write longer, but I am in the infusion clinic right now and am starting to think "funny."
Quick notes:
My mom is here now- got here on Saturday and is staying til Christmas, and we've been having a great time.
Hair mystery solved: it's on its way out. Beard still a question mark.
I am working, doing wine stuff. Not working at night right now.
Good neighbors are great to have, but good retired neighbors are worth their weight in gold. Whatcha doing? Nothing. Can you drive me to the dentist? Sure!
Well, the window of opportunity shuts quickly. Tuesday night, the night of my treatment, I was feeling great. Wednesday, same thing- even texted David Lusby about running a half-marathon. Thursday, spent the whole day running errands, and crashed hard early in the evening. I only slept about five hours on Wednesday, since I had to be at the infectious diseases doc early on Thursday, so maybe that was to blame. I have aspergillus, but right now that seems like small potatoes.
Point being, I should have blogged on Wed. or Thu., because I am fucking toast right now. Yesterday and today, my energy is below zero, making the smallest non-tasks- like reaching for a glass of water- seem like Herculean-type challenges. I guess this is all part of feeling it out- figuring out when the highs (please let there be highs) and lows are going to come, and living accordingly.
Caitlyn is doing her best to be positive- she is out getting our secular celebratory solstice holiday tree right now, and I wish I could have gone with her. And I want her to know that I wish I could have gone with her, but I can barely lift a finger. To her credit, she is going to keep asking me to do things, fully expecting that soon I will feel good enough to say yes to actually doing something. That's what I want, but one of the psychological side-effects is me wondering whether I should be able to do things. Do I feel "normal?" Is this hitting me harder than it should? Am I being tough enough?
I don't know the answer. Caitlyn does not either. I don't want to be babied, and besides, there's really nothing to do for me right now. I am a dark cloud right now, and I don't blame anyone for wanting to be out from under me for a little while.
Point being, I should have blogged on Wed. or Thu., because I am fucking toast right now. Yesterday and today, my energy is below zero, making the smallest non-tasks- like reaching for a glass of water- seem like Herculean-type challenges. I guess this is all part of feeling it out- figuring out when the highs (please let there be highs) and lows are going to come, and living accordingly.
Caitlyn is doing her best to be positive- she is out getting our secular celebratory solstice holiday tree right now, and I wish I could have gone with her. And I want her to know that I wish I could have gone with her, but I can barely lift a finger. To her credit, she is going to keep asking me to do things, fully expecting that soon I will feel good enough to say yes to actually doing something. That's what I want, but one of the psychological side-effects is me wondering whether I should be able to do things. Do I feel "normal?" Is this hitting me harder than it should? Am I being tough enough?
I don't know the answer. Caitlyn does not either. I don't want to be babied, and besides, there's really nothing to do for me right now. I am a dark cloud right now, and I don't blame anyone for wanting to be out from under me for a little while.