FIVE MONTHS TO GO.
Sunday December 12th 2010, 10:32 pm
Filed under: Leukemia, Word Nerd

(updated 12-13-10: see end of entry)

FIVE MONTHS TO GO.

The title of this entry is the way I noted today’s significance in my phone’s calender. From here on out, the capitalization and punctuation will only get crazier, so be prepared. As of Sunday December 12, I have five months of chemotherapy treatment left to undergo before I’m done. This is the last occasion of this sort to celebrate this year. In a few weeks, when someone asks when I’ll be done with chemo, I’ll be able to respond, “This year.” And then they’ll scuttle off mumbling about how that doesn’t sound so rough.

The past few months seem to have flown by me. That probably sounds like a good thing for someone being treated for cancer, but it hasn’t been for me. It’s given me the feeling of being a passenger in a car going faster and faster and seeing that the driver is not going to hit the brakes in time to stop the car before we accelerate right into that brick wall. The security of being told what to do, the warmth of being at home and cared for and being able to put off important decisions about life after May 12, 2011 are fast approaching their end. I expect it will be rather startling.

Don’t get me wrong–I certainly do not want to be on chemo forever. I don’t want to have leukemia again. I don’t want to have to fight against my body to stay alive ever again. But at least those things are black and white. Cancer = BAD. Life After Cancer = ¿COMPLICATED?

I’ve been sick and I’ve been sleeping a lot. Perhaps this is to make up for all the time I couldn’t sleep at all. This is definitely a big part of feeling that time is slipping away. Having four hour long days has got to affect the brain’s internal clock in some weird way. But I’ve also grown lax in keeping up quick notes in my calendar about what I’ve done on any given day. I haven’t been blogging. I haven’t been writing. I’ve been making excuses. Yes, I know and I agree that getting well is my number one priority every single day, and that sleeping 32 hours a day might be what my body tells me it needs to do right now. But that doesn’t mean I can’t write at least a measly 140 characters a day. I don’t want to look back and regret going silent at the end. I want to remember each day and what it felt like, and how it was different than the day before and exactly what I felt like five months from today.

So I’m going to try as hard as I can to bang out at least 140 characters each day. As this is not a New Year’s resolution, it might actually get done. I’ll call it my Five Months To Go resolution.

UPDATE (12-13-10): When I wrote that I would “try as hard as I can to bang out at least 140 characters each day,” I didn’t mean to imply that I’d be trying to tweet once everyday. I meant that I want to write more everyday than the amount of characters allowed in one tweet. I’m sure there will be days when I can only manage to write a tweet. In fact, I bet there will be days when I can’t write even write 140 characters to fill a tweet. At the very least, I’m going to try my best to write everyday.

See you tomorrow Internet,

–Reid.

—————-
Now playing: Scala And Kolacny Brothers – Creep (Originally By Radiohead)
via FoxyTunes



Dad’s New Job and Me
Monday November 22nd 2010, 1:32 am
Filed under: Family, Leukemia

The following is an email my sister Rachel sent out announcing our father’s new job and some neat things about me. Since she had already explained this recent news so well, I copied and pasted it here. Also, I’m pretty darn lazy. Here you go:

“I think I have told most of you about this exciting news, but I just wanted to let you know I’m so proud of my dad, the new ADL (Anti-Defamation League) Regional Director! I also want to share that as of Thursday, Reid only has 6 months left of chemo!!!

“I want to quote part of my dad’s cover letter to explain how I feel about the significance of these occasions:

‘I think it is fair to question why I would be interested in giving up a successful career to accept a position with the ADL. To understand my response, I need to share with you that in December of 2007 my then 24 year old son was stricken with leukemia. To make matters worse, we nearly lost him as he had an allergic reaction to one of his chemotherapy treatments and developed hemorrhagic pancreatitis. Today, he is doing well and by May of the next year he will have finished up what will be a three and a half year course of treatments. As you can imagine, my son’s illness has had many profound effects upon my life. Among them is the realization that we all need to spend what time we have pursuing our passions.’

“As my dad pursues his passion and my brother prepares to take back his life, I can’t help think of the meaning of being 24; we have seemingly endless opportunities to pursue our passions and 24 is the age Reid was when he got sick. At the start of the 6 month countdown to the end of these often hellacious past three years, I couldn’t be more happy or grateful. I am specifically thankful for each of you who have truly helped me and my family through this challenging time. I will never be able to articulate the impact your support has had on us. I just wanted to take this opportunity to sincerely thank you, and remind you of the importance of doing what you love and surrounding yourself with people that you love.”

By Rachel Levin, with an excerpt by Scott Levin. Used with permission; thank you both!

I am extremely proud of you, Dad, and I look forward to seeing you change the world. Thank you for letting me share what you wrote, but more than that, thank you for writing it in the first place. You’re my hero, and as far as I’m concerned, you’ve been changing the world for the better since the day we first met.

–Reid.



Six Months To Go!
Friday November 12th 2010, 9:22 pm
Filed under: Leukemia

This was a difficult month. I’ve been pretty darn sick and I’ve had to make some really difficult choices, all of which I imagine I’ll post about in due time. But today, despite all that, was a great day to celebrate. Mine wasn’t the only great news worth celebrating today (yeah, yeah I’ll post about all of it soon), but, hell, I only have six months of chemotherapy left to go! May 12, I am staring you down. I’mma comin’ for ya, and I’ll be there soon!!

–Reid.



Viva la Ass de Colorado!!
Thursday November 04th 2010, 1:44 am
Filed under: Liberty!

Colorado Democratic Party logo

Huzzah! Colorado remains a blue state! You know how big a deal this is? Can you feel how monumentally good this is? Seriously: do you know what this means?! It means I can go back to NYC next year without fear of being mocked endlessly and/or having to denounce my home state.

In Tuesday’s election, Denver Mayor John Hickenlooper was elected to serve as Colorado’s next governor; Senator Michael Bennett, who was appointed to take over Secretary Salazar’s Senate seat when Salazar was appointed Secretary of the Interior in President Obama’s Cabinet, won his first election to the United States Senate; Senator Ken Udall wasn’t up for re-election this year, but he’s decided to stick it out anyway, and he’s also a Democrat. We lost two Democratic Representatives to the U.S. House, but we retained three.

I have a lot more I’d like to say about this stuff, but I think I’ll leave it as is right now. I had a chemo infusion today, was diagnosed as too sick to take any chemo of any kind whatsoever for at least the next two weeks and we further discussed my brain and neurological issues (this will all be in another post). Let’s see, even if you put all that aside, there were still particularly biting attack ads this week, unverifiable mudslinging and total confusion about where my own party stands on some of the issues most important to me (there’s another post right there), I just need to leave the main focus of this post as something to be happy about. And not having to defend Colorado swinging to red to the left-wing, Communist, Jewish, homosexual, pornographers I consider my friends in NYC is just the right amount of happiness I needed today.

Oh, and we almost knocked Republicans down to minor party status in Colorado, but the Republican gubernatorial (ha ha goober) candidate somehow managed to get past 9%, just barely, and so the Republicans and The Constitution Party will retain major party status.

Other fun stuff tomorrow if I’m up to it, including email, blogging about chemo issues and blogging about how much I hate election season, unless it’s on “The West Wing.” If I’m up to it.

–Reid.

—————-
Now playing: The Beatles – Rocky Raccoon
via FoxyTunes



Poisoned By Intolerance
Thursday October 28th 2010, 1:33 am
Filed under: Liberty!

I hate the feeling that we’ve got a longer and longer road to walk down until we reach a place where people treat each other like people and not as anything less. 2010, you’ve downright failed at tolerance and acceptance. We’ll have to get to work on 2011 from day one.

This guy goes far beyond intolerance. He’s horrible. He makes me want to cry–and to change the world. I think I’ll do both.

–Reid.



Friends, Weddings, Friends’ Weddings, Theater, Memorials, Theater Memorials, Writing, Writing About All Of That Aforementioned Stuff
Monday October 25th 2010, 1:37 am
Filed under: Family, Friends, Health (Not Cancer), Leukemia, NYC, Word Nerd

I’m feeling well, I think. It’s been a while since I’ve felt okay, but I think tonight, right now, I’m feeling well. Turns out there’s a lot to catch up on, so go to the bathroom now and grab a snack on your way back before you start reading. I’ll wait.

Okay, welcome back. Here we go. Remember to keep your hands inside the blog at all times.

This evening, my grandma took my folks, my aunts and uncles, and me to see Alfred Hitchcock’s 39 Steps at the Denver Center for the Performing Arts. She had already seen the play and thought I would enjoy seeing it so much that she gave tickets to my parents and my aunt and uncle as anniversary gifts. Their gifts also included seeing the show with my grandma, my other aunts and uncles, and me. It made some sort of sense, somehow. And even if it didn’t, everyone had a great time.

This production of 39 Steps was turned into a farce of itself and Hitchcock films in general. It was in one of the DCPA’s theaters I’d never been inside before. It was like a black box, only with good, comfortable seats. The play was great and very funny; it was well re-imagined, well directed, well acted and well produced. The ensemble was fantastic. In many scenes, two or three actors switched between different characters faster than the audience could track. Each actor made clear distinctions between their different characters, so there was no confusion between their split-second changes. They were aided by an array of spectacular hats and, in several cases, entire wardrobes–changed on stage in the blink of an eye. They did a great job–with only four actors–filling the stage with more than a dozen people. I highly recommend seeing 39 Steps if you have a chance.

I feel like I haven’t been writing in my blog as much as I’d like to lately. I think, as I’ve been sick for months and months with little well time in between, it becomes monotonous and depressing to write about how I feel, what the doctor says and what we’re going to try. I’ve been writing (offline) while resting in bed. I have a few things I’m really happy with, and that I have to admit I look forward to having time to work on during the day. It’s that writer’s high I’ve written about before. I’ve never personally experienced a runner’s high, but for all my marathon running friends out there, I figure the principle is the same, at least.

There is one blog post in particular that has been giving me trouble. I’ve been tinkering with it for a week, trying to get across exactly what I want to say about being at Summer and Alex’s wedding in Connecticut and being with our ever expanding family of friends. But, to hell with that: everything was great. The wedding was absolutely wonderful, and I was thrilled to be able to attend. The ceremony was just about as perfect as any I’ve ever attended. Not only was the wedding great, but being around my friends was intoxicating. It always is. Being around this family of friends always seems to refresh my health, my mood and my outlook. All the significant others seem like such perfect fits into our circle. It’s very hard to say goodbye to everyone, but at least we’re already scheduled to have two more weddings next year–several months after the chemotherapy drugs should be out of my system. Maybe I’ll be able to stay up and party past 10:00 pm!

We were down one friend at the wedding, who we missed greatly despite his valid excuse: McDole’s in or near Afghanistan right now, serving our country. He taught me that life is–or can be broken down into–a series of five minute achievable goals. I try to use this as often as I can to get through tough situations. Recently, though, he announced a long term plan for all of our friends that I’m not sure whether or not it was genuine or a joke. One day, he told us, our circle of friends should all live in the same cul-de-sac. That sounds pretty damn great to me. And I think McDole was serious.

Speaking of weddings, Dave Burdick is getting married. That’s awesome, and I’m really excited for he and his fiancee Rachel. For some reason, this news struck me entirely different than other friends’ wedding announcements have. Maybe it’s because I don’t see Dave as much as I’d like to anymore. Maybe it’s because just about everything Dave and I have ever done together would be something 14 year olds would enjoy, and 14 year olds don’t get married, or if they do, it’s usually frowned upon. That’s probably it. I’m really happy for them.

Before traveling to Connecticut for Summer and Alex’s wedding, I caught up with friends in New York City (which was great), and I attended a memorial service for Chris Thomas. Chris was head of Pace’s Performing Arts Department when I was there. He had been there for many, many years, but had to retire last year. He set the Department on the path to offering new majors like musical theater and dance, he set the school on the path to offering an MFA program, which happens to be the Actor’s Studio, with whom Chris opened discussions with. He cared about us, he took care of us and I think he was always very proud of us. The circumstances surrounding his death are incredibly sad, and I just hope he knew how much he was loved. Judging from the memorial and its many speakers (including me), Chris Thomas won’t soon be forgotten.

Finally, I have the Dictionary.com app installed on my iPhone. When I woke up today at 1 o’clock in the afternoon, I could only chuckle at today’s word of the day: slugabed. It’s not entirely an accurate summation of my circumstances, but I have certainly announced that I’ve felt like a slug many times through my treatment. And for today, it was entirely accurate. Haha.

All right, I think that’s good enough for one night and eight blog entries.

–Reid.

—————-
Now playing: Guster – Jesus & Mary
via FoxyTunes



Seven Months To Go! AND: I Try This Whole Going To NYC For A Wedding Thing Over Again.
Tuesday October 12th 2010, 11:46 pm
Filed under: Friends, Leukemia, NYC, Word Nerd

I officially have seven months remaining of chemotherapy treatment as of today, Tuesday October 12, 2010. A friend told me how many days are left as of today, but I think the number so overwhelmed me that my brain purposefully did not commit it to memory. And what would a special day like Seven Months To Go! be like without a trip to the hospital and some fear that I would miss the second wedding in ten days? It was that kind of day. Or at least it seemed like it was that kind of day until we played trivia with friends, which was fun, and we saw the first Chilean miner emerge out of the ground after a harrowing 69 days in a collapsed mine, which was very inspiring.

Tomorrow I’m flying to New York City so that I can attend the wedding of Alex and Summer this weekend (which is, unfortunately, not steampunk themed). Aside from catching up to friends I missed this past weekend, the extra days are basically for sleeping off my flight and otherwise acclimating myself to the East Coast. It’s just like putting the bag with the new goldfish in its old water from its old bowl into its new bowl with the new water before dumping it into its new bowl outright. Growing up, my sisters and I went through a lot of goldfish we won at Purim carnivals, so I don’t know how universal this simile is. But the point is: fish fly east for Summer. I think.

The wedding is actually taking place in Connecticut, at a coincidentally familiar location: Candlewood Lake. I spent many happy years around, on and in that lake with Amy. Although neither the bride nor the groom are from Connecticut, it is a very beautiful place, and I certainly understand its appeal. I am just hopeful that the predictions of a nor’easter are all wrong.

I grew up with Alex in Colorado, and I feel like Summer has been a part of our circle of friends for a long time now. I’m also looking forward to seeing a lot of other friends this weekend who have scattered across the country. Over the past couple of years, we’ve had many chances to commune at weddings, which has been great. I think after everyone is married, there are already plans for everyone to get married again, just so we can keep seeing each other for happy occasions.

Those plans could probably use some work, but I think their intent is in the right place.

–Reid.



Accept my regrets; I am unable to attend.
Sunday October 10th 2010, 10:42 pm
Filed under: Friends, Leukemia, NYC

Yesterday I made a very difficult decision: I would not be flying to New York City this weekend. I was supposed to be going to New York specifically to attend the steampunk-themed wedding of my friends Sarah and Tucker, which took place today (Sunday, 10/10/10). Although I’ve been slowly (very slowly) feeling better lately, I did not feel strong enough to fly yesterday (Saturday). I don’t quite understand why traveling–even as a passenger under the most ideal conditions–takes so much out of me; but it does. It drains several days worth of energy out of me, and often leaves my immune system far more compromised than it already is, which, in the past, has lead to months of illness.

When I awoke this morning, I hurt all over. I felt like I had a really intense workout yesterday. A workout that included some time on a Spanish Inquisition-style rack. I considered this pain for some time before trying to move out of bed. I decided the pain could be taken one of two ways: either the universe was confirming that it was a wise decision not to have flown to NYC yesterday, where I would have been in even more pain after traveling, or conversely, that the universe was punishing me for not being in NYC. Unsatisfied with either reason, I came up with a third possibility: maybe there was not any meaning to it whatsoever–it was just a coincidence and I should stop worrying about it and write more about Tucker and Sarah.

I’ve known Tucker since he successfully auditioned for Better Than The Machine at Pace. In our fifth and final show at Pace, Tucker contributed some of the very best sketches we had done: an old lady knitting her way to the top of a skyscraper in “Extreme Knitting,” and Tucker trying to pickup a woman at a bar while underscored by the smooth vibrations of a jazzy ringtone on his cellphone in “Cellphone Pickup.”

Sarah and I met in a “Writing For Film” class at Pace, in which I all but directly accused her of stealing a sketch from Matt Gallo (it turned out he had given it to her; whoops… still sorry about that, Sarah). Over at least the past year, Sarah and my friendship has been primarily the two of us always wishing each other good health because we could both use some.

I got to work with both Tucker and Sarah when they made a feature long movie for Tucker’s honors thesis. The movie was actually broken down into lots of shorts, one of which I was lucky enough to be cast in as the sole actor. I was cast as a man who represented all of mankind and ate lots and lots of yummy, delicious blueberry pie, which I think was baked by Sarah’s mom, if I recall correctly.

It was important to me to be at their wedding and I’m very sorry to be missing it for several reasons:

1) The biggest and most obvious is that I regret not being able to share my friends’ special day with them. I was honored to be invited, and had looked forward to seeing Sarah and Tucker become Sarahandtucker.

2) I would be really, really excited to be invited to a themed wedding of any sort, but a steampunk wedding seemed particularly fun. My mom and I put together a pretty kick ass steampunk outfit for me to wear. Meanwhile, I grew special Victorian facial hair from my actual face all by myself! I really wanted to see what everyone else was wearing (especially the bride and groom), but I won’t lie; I wanted to show off how cool I looked. I’ll take any excuse to wear a costume (so much as it doesn’t involve shoving cards into the arms of passersby).

Quick interjection in the list here for a sec. One of the facts I had to contend with in not flying to New York this weekend was that I will probably never be invited to another steampunk wedding. Which is a bummer. So I got to thinking that perhaps when I’m healthy next year, maybe I can throw a small Sarahandtucker steampunk anniversary party. That way, I’ll have a chance to be adventurer Addison “The Captain” Cobb, the independently wealthy motorist, pilot, and secret private investigator who, despite his many Bransonesque exploits, feels most at home in the steam powered engine room of his mighty airship, the Lionheart. And I’ll get to experience a little tiny bit of the magic I missed.

Okay, back to the list:

3) The wedding ceremony took place today, Sunday October 10, 2010. When I was told this was the date of the wedding, 10/10/10, it seemed especially appropriate for Tucker. Tucker has always been a video gaming/computing/chiptune fanatic. Ones and zeroes are what propel that entire world. They form binary, the base 2 system of counting. 101010 quite frankly seemed like the perfect day to recognize that.

Of course, the date might just have been picked because it looked cool.

4) …except, out of idle curiosity, I decided to convert 101010 from binary into decimal notation, our familiar base 10 counting system. I tried to do it in my head, which helped me fall asleep for the night. Then I tried to write it out on paper, but I kept forgetting numbers. There are literally only two numbers I could write, and I would forget where I was while writing all of this down. I’ve never claimed to be good at math. Finally, I decided to find a converter online, which took about 6 seconds and revealed that 101010 in binary is, in decimal notation:

42.

Which, of course, is the answer to life, the universe and everything. 42. Good work guys.

I wish the best to both of you in this first day of your new lives together. I hope you have a long, wonderful, and healthy life together. I wish the very best for you, and while I am sad I missed the wedding, I couldn’t be more happy for you.

–Reid.



My Monday As A Peanuts Comic Strip: I Feel Great!
Tuesday October 05th 2010, 1:43 am
Filed under: Leukemia, Remix Comix Stripx, Who Knows?

I woke up Monday feeling refreshed from a very long night of good sleep. I felt better in every respect, including a reprieve from the painful neuropathies in my legs and feet. I seemed in good enough condition to go get my flu vaccine. Although The Children’s Hospital has none (which is awful, but a topic for another day), every store with a pharmacy has tons of vaccines.

I got my shot, and, wouldn’t you know it, not fifteen minutes later I started feeling crappy again. I don’t mean I got the flu, or that I had some other bad reaction to the vaccine. If I were to guess, which I will, I’d say that when I got the vaccine, my good white cells were all called in to investigate, found all of the vaccine’s papers to be in order, allowed it to proceed from my arm into the rest of my body, and then went out to celebrate at the Epstein Bar. Unfortunately, after getting wasted, the white cells realized that one of the newer recruits had put up one of those novelty “Gone Metabolizin'” signs on the station door, instead of the official “We’re All Definitely Still Inside, So Don’t Try Anything, Cause We’ll Totally Come Inflame You” sign.

That served as an invitation to every lowlife virus, bad bacteria, and even some chemo drugs on the take in my body to party at White Cell Station, knowing all the white cells would be out for awhile. The white cells rushed back as fast as they could, but the place had been trashed by the time they got back. There were platelets everywhere and many of leukemia and chemo’s best side effects who had been locked up, including neuropathy, headache and loss of appetite had broken out to go cause trouble elsewhere. That’s my medical analysis, anyway.

Check out this comic strip I created using Charles Schultz’s Peanuts to sum up Monday in more lay terms for all of you non-medical types out there:

My Monday As A Peanuts Comic Strip

I was finally feeling better, and not just a bit better; I was feeling well. Aaaand then I had to rush home so I could sleep all day. I hate the unpredictability of my body due to chemo. I can say, with complete certainty, that chemo will not be missed when I’m done with it. That’s gotta hurt, knowing that. Sorry chemo, but that’s just the way it is.

–Reid.

P.S. I was originally going to spell her name “Leucykemia,” but I ended up choosing “Lucykemia” to make the name clearer. What do you think?
—————-
Now playing: Guster – Jesus & Mary
via FoxyTunes



Hey, The Universe, go pick on someone your own size!
Sunday October 03rd 2010, 1:53 am
Filed under: Leukemia

A note from the blogger: I have finally banged out these updates at two in the morning, while overly tired, in pain, and on (prescribed) narcotics. For the past week, I’ve been trying to make a quick list of updates, but even without my brain being so addled, I’ve been having a difficult time. I’ve got a lot on my mind and its been hard to funnel everything into a readable blog entry. Anyway, please, while you read this, remember the state I was in when I wrote it and also that I do not have a funnel.

–Reid.

The neuropathic pain in my right foot moved up my right leg to just above my knee and then, to prove it is a non-discriminatory nervous system malfunction, the neuropathies jumped over to my left leg and foot. All the pain is becoming symmetrical (“Let’s Get Symmetrical, Baby” would’ve be a great doin’ it song by Barry White). The pain intensified in both legs, and while it all hurts, the top of my feet close to my toes is the worst pain of all.

This is pain, the likes of which I have not felt in years.

When asked by a nurse in the oncology clinic how I “would describe the pain, for example throbbing, aching, burning, st–” I explained the pain felt a lot like “someone used a potato peeler to take off my skin and then they submerged my feet and legs into a tub of the strongest, most citrusy lemon juice ever known to mankind. And then they threw some fully-charged electronic devices into the tub for good measure.” She replied that this description was not on the list. I find that hard to believe.

I did PT twice this week. I did a lot on my back in an attempt to circumvent adding more pain to my spastic legs, whose toes were movin’ all over the place. Hey! I can’t even move my second toe (pointer toe?) by itself if I try, and believe me, I’ve tried. The neuropathy must know something I don’t about operating my toes. I wish I hadn’t thrown away my instruction manual.

This neuropathy feet thing (neuropafeet?) is weird. I’ve been told that this pain seems similar to what my feet were like when I was in the hospital in 2008 (I can’t remember). And that whole situation didn’t turn out so well (I can remember). My oncologist explained that the methotrexate toxicity causing all of this neuropathy, and causing it to get worse, would be very strange. I, a mere layman, also had an inkling that this wasn’t normal. It still seems most likely that all of this stuff is being caused by methotrexate toxicity that has been building up for a while.

My right eyelid (reyelid? reilid?) stopped spasming. That’s some good news. I was fairly self-conscious about it, because I didn’t want anyone to think I was winking at their tiny kid in a creepy/suggestive manner, or some other wild mix-up that, if it had a laugh track behind it, I could sell to ABC as part of ABC’s “ABC’s Thursday Night Crappy Situation Comedy Show Hour: The Best Laugh Tracked Situation Comedies On ABC!” Speaking of which, I’ve noticed that in commercials, every damn show is the best at something, or the number one *blank* of the season, break-out hit, police special victims unit drama, police special victims unit comedy, “Best Show That We Canceled Another Show To Put On In An Attempt To Cash In On This Vampires Craze Our Daughter Mentioned At Dinner Last Night,” and other stupid things like that. I’ve been getting terrible headaches, but that’s nothing new and it actually makes much more sense now (not due to ABC’s “Thursday Comedy Power Hour: One Full Hour Of All The Shit We Could Possibly Fit Into Forty Minutes, Hosted By Ted Koppel!”) with the methotrexate toxicity.

I’ve been surprised how hard it has been to write about the toxicity in my brain, and how this entry has proved that much harder than the last. For several days, I’d been trying to write this entry as a telling off of The Universe, because things haven’t been going quite my way for a bit of time. “Yo, The Universe, yeah I’m talking to you! I get it. You’re big; the two biggest hands on your watch are a millennium hand and an eon hand (thanks Cosmology Professors Flansburgh and Linnell). You’re strong; suns turn into black holes when they look at you wrong. And you’re funny; when you said ‘pull my finger,’ the resulting release of gas caused the Big Bang.”

But I’ve found the subject to be particularly hard to laugh about, or to put a funny spin on this toxicity in my brain. In all honesty I’m scared about it. The fact that it’s in my brain, doing things like making my toes wiggle without my direct consent really scares me. I don’t think it will cause any sort of long term problems brain damage, but it could. No matter how many times doctors tell me that the risk of this or that is very, very low, I can’t seem to get over the fact that there’s still some risk of trouble–I’m living proof of that. On one hand, we deal with some risk every day with each decision we make. On the other hand, my phone book-sized charts are full of actual, empirical data that proves an entire Reid Levin can fit in that .0001% chance for getting a side effect that is much worse than the disease.

I’m having such bad pain that on my last visit to the hospital, I needed a wheelchair to get around. My oncologist told me I could go off chemo. We could drop the remaining Ommaya (head) taps that are scheduled between now and May 12, 2011. I don’t think I could quit anything now, but it’s such a tempting thing to put in front of me. It seems like some offer from the Devil (sorry Tim, nothing personal). If I ever had a recurrence of leukemia, which could take another 3 1/2 years of my life (or maybe even much worse), I’d fully blame myself for not finishing treatment. I’d be saying, “if only I could have braved those last seven months of methotrexate, I wouldn’t be in this potentially fatal predicament.”

Tonight, although I was still feeling crappy, I went with my folks to see Ben Folds playing with the Colorado Symphony Orchestra. I’m glad we had a handicap placard so we could park next to the concert hall in the DCPA. Just sitting there, though, listening to very mellow, beautiful music, wore me out and ramped up the pain. Maybe it was the sitting for 90 minutes, even though I was able to stretch my legs. Maybe my legs wanted to dance, and when they realized I wasn’t going to get up and dance, they committed an act of self destruction to teach me a lesson. To show me who’s the boss.

The basic plan right now is for me to ride all this bad stuff out, and we will check my CSF before the next scheduled injection of methotrexate into my head, to make sure we’re not making my CSF worse. When I say “we,” I mean I’ll be there with the needle in my head, but my doctors and nurses will do all the technical stuff, like checking on methotrexate toxicity and turning up the air conditioning. I may not even be able to take the oral methotrexate I normally take every week because the one thought is that my blood brain barrier has been breached by methotrexate in my blood.

ARGH.

I’m going to two weddings this month. One in NYC and one in Connecticut. I’m really, really hoping that I’ll be feeling well when I’m out there, and on my flight out there. But what I hope for most is not having to think about all of this stuff for a while. Sure, I’ll still take my pills and act like a responsible chemotherapy patient. Or maybe I won’t…

A 27 year old comedian gets a kid disease and now he’s learning the meaning of An Apple A Day, in this season’s number one new smash hit cancercomedy/children’s reality show mid-season replacement on ABC’s “We Used To Have Urkel! Are We Really Putting This Garbage Up Against 30 Rock and The Office and CSI: Des Moines?” Super Fun Laugh Track Hour” Thursdays at 9:00–

Yeah, we’ll see.

–Reid.