My Pancreas Strikes Again: I Got Diabetes From One Of My Meds (An Anomalously Negative Post For Me)
Monday October 27th 2014, 9:55 am
Filed under: Health (Not Cancer), Leukemia, Me, Myself, and Reid

I hate my body. I’ve hated it since I was five-years-old and started getting beat-up for being bigger than most the other kids. It started as a tall and a fat thing. Little guys would jump on my back and pull me down to the pavement to prove their worth. Other big guys would just sucker punch me and then kick the shit out of me because they thought it was funny.

I don’t hate my height anymore. That passed when the last little guy jumped on my back. But I’m fat; I’ve been fat since I had my tonsils and adenoids taken out at age four. It didn’t really show until I was five. I’d been a wispy little thing, destined to be thin and tall. But something changed all that.

I played soccer, I was on swim team, I played baseball, and I even played j.v. tennis very poorly. I’ve had personal trainers at gyms. The point is, I was active. And I ate well, too. My mom always fed me (and still does) healthy meals. I didn’t try a Twinkie until I was 21, far from home. But it didn’t matter.

I’m fat and I’ve never been able to solve that problem.

It’s always been something I’ve hated about myself, but, in the past few years it’s become something that’s scared the hell out of me. It’s always in the back of my mind, and I’ve even talked to doctors about it. I suffered major, major side effects from chemo and radiation that have left me seven years away from the life I want and wondering when, and if, I’ll ever have that life. The major problems I’m dealing with now are nervous system damage and brain damage, which have no sort of timeline to being “fixed.”

That’s where my fear of being so overweight comes in. What if I finally get better just in time to have a heart attack or a lifetime of diabetes? What the hell kind of victory is that?

I’ve been feeling sick all summer, into the fall. I blamed it on my ongoing withdrawal from a medication I never should have been put on. It turns out it may have been something more nefarious. I was put on a medication in the early springtime of this year that it seems has been chipping away at my pancreatic function. Specifically, its ability to create insulin. I’ve officially been diagnosed with diabetes, which explains a lot. Though whether it’s type-1 or type-2 is still in question.

Due to my young age and the sudden onset of the diabetes, some doctors think I have type-1 diabetes. The irony is that type-1 diabetes isn’t the kind of diabetes overweight people usually have to fear. Due to another major side effect during chemo, namely three life-or-death battles with pancreatitis, my pancreas is weak. The pancreas is responsible for creating insulin which breaks down carbohydrates, which I haven’t had a problem with until–as far as I know–very recently.

I also saw a doctor who thought that due to the severe damage to my pancreas caused by both my pancreatitis and this medication, I might have type-2 diabetes in which my body can’t process the insulin generated by my pancreas. This again, would be ironic, having nothing to do with my weight.

This will hopefully be a short lived side adventure, but there’s a distinct possibility that whatever kind of diabetes I’ve picked up, I may have for life. Every night, my parents have been giving me insulin shots in my stomach (I just can’t bring myself to stick a needle in my gut), and my diet has been very restricted, in an attempt to get my blood sugar down to a normal, safe level.

I normally try to put a positive spin on all of this, but I’ve never made that a requirement of myself or my blog. People are used to me writing about a good outlook mostly because I don’t publish my negative outlooks. I’ve been off of chemo now for the same amount of time that I was on it, three-and-half years, totaling seven years of fighting. I’m no longer fighting cancer; I’m fighting the effects of chemo. Chemo ended three-and-half years ago, but it feels like it won’t ever let me out of its grasp.

I’ve got diabetes with needles we have to stick in my stomach, I still have brain damage that causes me to experience tactile hallucinations at night, and I have a freaking hole in my ear that when I went outside yesterday without it covered, insects wouldn’t leave alone. I’m tired of fighting something that saved my life. I’m tired of fighting something that’s three-and-a-half years gone. I see all these people that have gone through chemo and are now living normal lives. I admit, 100%: I’m jealous. On the other hand, I certainly don’t forget my friends who didn’t make it through chemo.

That being said, I made it through chemotherapy and I’m still here. It was difficult and I felt justifiably victorious at having passed through such a difficult gauntlet. But these delayed-chemotherapy surprises–or “side adventures” as I’ve taken to calling them, as if my life were a game–just keep popping up, sometimes requiring years of dedicated work to fix, making it very hard to stay positive and keep my eye on the future.

–Reid.



“Chapter 11: That Time I Got That Thing Stuck In My External Ear” (abr.), Sinusitis, and Hail On the Homefront
Tuesday September 30th 2014, 6:08 pm
Filed under: Denver, Family, Health (Not Cancer), Me, Myself, and Reid, Who Knows?

Heya, Blog Reader,

I have a sinus infection that I think is on the way out. I wasn’t given antibiotics or allowed to see my ENT. I guess I have mixed feelings about not getting antibiotics–I’ve had a lot since chemo and I know the hazards of taking too many. But they usually make me feel better. Instead, I got a nasal spray, and I guess that’s helped clear things up. So that’s fine. The ENT thing was stupid. Basically, I haven’t seen any of my ENTs–who I know by name and vice versa–recently enough to see them again without a referral, which I did not receive. University Hospital, you may have saved my life, your stupid bureaucracy is intolerable.

We had our house redone this summer on the inside and the outside and it was unbelievably stressful for me, and I wasn’t in charge of anything or dealing with misogynistic contractors like my mom had to everyday. I think the stress level of people in the house all day went:

1. Mom
2. Ferris (the dog)
3. Me

But just because I was third doesn’t mean I wasn’t stressed. I lost 25 pounds, which I’m happy about, but everyone around me tells me was stress weight and not a good way to lose weight. My body image issues probably deserve a blog of their own, but let’s just say I know it wasn’t a good way to lose the weight, but I’m not concerning myself with it too much.

As part of the renovation, we had a new roof put on the top of the house (where one would usually put a roof) and had the house painted and had bad wood boards replaced and it looked great!

Then we had a big hail storm. When I say big, I mean ping-pong sized hail with the density of golf balls. I guess those are kind of the same size, but the individual pieces of hail looked like ping-pong balls and felt like golf balls.

This was what our backyard looked like yesterday:

Hail Damage
There’s a giant blue spruce above that glass table that got hammered by hail. The glass table was surprisingly, happily, somehow not broken. But the roof and boards took a big beating and so I may lose some more weight.

Don’t worry, no hail made it into the East Room.

Phew, with all that out of the way, it’s time for another chapter from the beloved 2,034 page medical mystery novel Reid Levin: Medical Mystery – Volume 2:

“Chapter 11: That Time I Got That Thing Stuck In My External Ear” (abr.)

I noticed about two months ago that my right ear hurt any time I slept on it. It hurt to sleep on and then it kept hurting when I wasn’t sleeping on it. It also turned bright red. I took to sleeping on my left side, which I prefer anyway, but my right ear just kept hurting and glowing bright red. A little thingamajig started to form on my ear, which I immediately, in a total state of panic and illogic, assumed were a sac of spider eggs.

Before we go any further: allow me to state that there were not and have never been any spider eggs growing in my body. When I get weird bumps that start growing, I fear that a spider has laid her eggs in me because I had a substitute teacher in Fourth Grade tell me about a spider laying eggs to someone she knew. I think she made up a lot of stuff, or couldn’t tell the difference between awake time and asleep time. She told us all kinds of crazy stuff, like how she drove past this mystical car crash where everyone was on fire, then she thought better of it, so she turned around to help, but it was completely gone, like there had been no car crash in the first place. So the spider thing is completely irrational and I know that, and I usually play it off as a joke. Now you know the truth: I’m only kind of joking.

Teachers have a real effect on kid’s lives and I want to salute all those teachers who take this responsibility seriously and don’t just spend years fucking kids up because they think it would be funny. There have to be tons of people who get a teaching certificate just to mess up kids lives and we don’t even know it until kids go to the next grade and can’t do multiplication.

You can read more about this stuff in the unabridged version of this chapter, but, this being the abridged version, we gotta get back to my outer ear.

A thingamajig was growing on my ear and it was redder than the rest of my red ear. I went to the dermatologist who told me I had a corn on my ear cartilage, which was a genetic disease that only people over 80-years-of-age usually get. He gave me an antibiotic cream to put on it and told me to cut a hole in a pillow so as not to aggravate my cartilage when sleeping.

I started sleeping mostly on my left side, my previously mentioned prefered side, with my ear inside this hole I’d fashioned in one of those memory foam pillows. A few things happened:

1) My right ear started getting better.

2) My left ear started doing the whole turning red and painful thing.

3) I was scolded for sleeping on one side of my body by several of my doctors.

Eventually, both ears had some sort of bump on them. The one on the left responded quickly and appropriately to the antibiotic cream and I was able to sleep on the pillow with the hole in it on my left (prefered) side. The one on the right just had it out for me. It just wouldn’t go away or stop hurting if I slept on the hole pillow with it. It would go away for a while if I didn’t sleep on it for at least a week. If I slept on any normal kind of pillow, both ears got mad. So the hole pillow on my left (better) side became the obvious go-to.

For some reason, even though I was still putting antibiotic cream on it and not sleeping on it, the little thingamajig grew back on my right ear. Thus, I decided to return to the dermatologist.

Unfortunately, my dermatologist of 18 years wasn’t in. He’s definitely the doctor I’ve had the longest. That doesn’t mean I like him most, it just means he hasn’t messed me up. Which, in itself, is saying a lot. I’ve had a lot of doctors and, well, things happen.

Unfortunately, the thingamajig had to be removed from the cartilage of my right ear, which unfortunately meant that my ear would have to be cut into because that’s how you get to the cartilage, if you’re ever looking for it. The stand-in dermatologist told me I did not have a thingamajig, but rather chondrodermatitis nodularis helicis. I WAS CLOSE. She seemed nice enough and knowledgeable about getting rid of this thing so I let her get it out.

She proved to be a veteran at excising bits of ear tissue (pictured here working on a previous patient), but I still don’t like knives and needles near my face. They make me feel like I’m a pumpkin being carved for Halloween.

Oh wait, that wasn’t her. That was Mike Tyson biting off part of Evander Holyfield’s ear (possibly not for dermatological reasons). Ohohoho! Shame on me! But, in my defense, I do look like I had a bite taken out of my ear. It looks a lot like Mike Tyson or a tiny shark bit it off. It’s going to take several months to heal, which I can deal with. The interim-dermatologist made sure to tell me that she’d only seen chondrodermatitis nodularis helicis on the ears of people in their 80s.

I told her I needed people to stop telling me that.

End of Chapter 11 (abr.)

–Reid.



Return To The Cosmos… And To Science.
Sunday March 09th 2014, 10:11 pm
Filed under: Family, Knowledge Junkie, Me, Myself, and Reid, NYC

34 years after his hero Carl Sagan first gave the world “Cosmos,” Neil deGrasse Tyson, the director of New York City’s Hayden Planetarium, hosted the first episode of a new “Cosmos” series tonight. It was fantastic.

When I was younger, I had a huge passion for science. This passion was spurred on by shows like “3-2-1 Contact,” “Bill Nye the Science Guy,” and countless reruns of Carl Sagan’s original “Cosmos: A Personal Voyage.” Although the original “Cosmos” series from 1980 was made up of only 13 episodes, they felt like new adventures every time I watched them.

Sagan didn’t just make science unbelievably interesting to me in an easy-to-understand way, he showed why science was such an easy subject to embrace and love. It’s the story of us all, of all that has ever existed, and of all that will ever exist. “We are all made of star-stuff,” as he famously said.

Although the world tragically lost Carl Sagan in 1996, his work lives on. With the invention of YouTube, I watched many of his old television specials in college. Even without the assistance of drugs, I found what he taught to be mind-blowing, just as “Cosmos” had been. I even read a few of the scores of books he wrote and/or edited. Dr. Sagan made science so obvious and so wonderfully magnificent at the same time.

Unfortunately, by the time I was in college, I had been discouraged from being anything more than an amateur scientific observer due to two very specific issues. First, I posses scientifically-proven terrible mathematical genes, a trait shared by the genes of everyone in my family. I probably could have overcome those faulty genes and learned not to fearhate math if not for the second issue. Beginning in the eighth grade, I had an unending series of science teachers and professors who could be ranked from “less-than-inspiring” to “downright-unhappy-with-having-to-teach-science-and-eager-to-take-it-out-on-their-students.”

By the middle of high school, I held little interest in a professional life in the field of one of my greatest passions. By that time, I had enough other things to be passionate about that it didn’t bother me. I went to college in New York City and studied acting and writing and continued with another of my longtime passions, comedy. I even took a class called “The Philosophy of Science” to satisfy one of my science credit requirements without having to do anything too sciencey. And especially not mathy in any way, whatsoever.

In my defense, I did date a wonderful, brilliant scientist for many years. But I also vividly remember being in a pharmacy with her, carrying her biology book, the cashier looking at both of us and, apropos of nothing, correctly stating that she was clearly the scientist. My mouth wasn’t even unconsciously pouring goofy nonsense out at the time. It was just that obvious.

I’d left science behind, though not my curious mind. During my time in New York City, both during college and after it, The Hayden Planetarium at the American Museum of Natural history was one of my favorite places to visit. It’s a giant sphere, at the center of which, sits another very large sphere. Throughout the giant, spherical planetarium are dozens of decorated spheres of all different sizes in an exhibit called the “Size Scales of the Universe.” (That’s site’s not all that exciting, but there’s a picture of the inside of the planetarium and some size scale examples, so you have some idea what the hell I’m talking about.)

Each of the smaller spheres represents the size of something when compared to the sphere at the center of the planetarium. For instance, there are models of all the planets in our solar system hanging around the center sphere, to size scale as if the center sphere were the size of the Sun. There are also spheres that represent how big the different parts of atoms would be if the big center sphere were a proton.

Actually, there’s a similar sort of exhibit on the web that you can take a look at to kind of sort of get an idea of what’s in The Hayden Planetarium, The Scale of the Universe, created by Cary Huang. It’s great, but don’t use it as an excuse not to visit the planetarium in all it’s three-dimensional, gigantic, spherical glory. Seriously, I’ll know.

I never cease to be amazed at how the Size Scales of the Universe exhibit made it so easy for me to suddenly comprehend the most massive of size relationships between so many things in our universe, from the very largest macroscopic galaxies to the tiniest microscopic parts of the cells in our bodies. Standing in that room always seems both so obvious and so wonderfully magnificent at the same time. When I’m in there, I’m always reminded of my youthful passion for science and the people that made it so obvious and so wonderfully magnificent, people like Carl Sagan.

I first became aware of Neil deGrasse Tyson not from my many visits to the planetarium of which he is the director, but rather through that other passion of mine I mentioned, comedy. Tyson has appeared numerous times over the years on “The Daily Show with Jon Stewart,” and its sister show “The Colbert Report.” I won’t explain what those are, because you should just know. I try never to miss either show, but if there are ever times when I go to extreme lengths not to miss an episode, it’s when Tyson is the guest.

He’s funny and personable and, over the past 15-or-so years, like Bill Nye, he has been an advocate for the absolute necessity of Americans to renew their interest in science. Both on a “wow, that’s neat!” way and a governmental “we’ll put money into this!” way. Every time he appears on one of these shows, I find what he had to say about science absolutely fascinating. I’ve always thought his advocacy for a renewed focus on science in America is extremely important. Science has been getting trampled on in this country for at least half of my life, which I find extremely offensive and, quite honestly, just plain bizarre. How could you not “believe in” science? That’s not even how it works.

I even bumped into Dr. Tyson a few times in New York. I think the longest conversation we ever had was, “Hey, I’m a huge fan of your work!” and him running away yelling, “Thanks! I don’t just do ‘The Daily Show!'” I knew that by the time of that run-in, but I’m sure he got that all the time. I also ran into him once when I had grown a large, gnarly beard for the part I was playing in “Hamlet” (Old Hamlet [The Force ghost of Hamlet’s murdered father, played by James Earl Jones in “The Lion King”]). It was also the middle of the winter and I was wearing a long trenchcoat. I attribute the large beard, the trenchcoat, and my over all largeness to him not making eye contact with me and quickly ushering his children inside the nearest building very quickly.

Anyway…

Even though I felt terrible today, physically, mentally, and emotionally, and even though I spent most of the day in bed, there was no chance I was going to miss the premiere of the all-new “Cosmos.” This premiere of this sequel to Carl Sagan’s original “Cosmos: A Personal Voyage,” subtitled “A Spacetime Odyssey,” had been on my schedule ever since I read an article about Seth MacFarlane producing it all the way back in some previous year like 2011 or maybe even 2010 (it feels like a few years ago). As soon as commercials for the new show started airing, my parents and I agreed we were all going to watch it together, no matter what.

As I watched, I found myself elated and literally (yes, literally) jumping out of my seat in excitement. I couldn’t stop saying “I’m loving this!” throughout the broadcast, nor could my parents. We only quieted down for fear we’d miss something. Lo-and-behold, this new “Cosmos” hosted by Neil deGrasse Tyson, has reignited a passion for science that I’ve not felt in many years. The chances are almost infinitesimally low that it’ll change my mind and convince me to ever become a professional scientist, but I definitely have a warm place in my heart for science that–while never having gone away–was inflamed tonight.

Dr. Tyson made science seem so obvious and so wonderfully magnificent at the same time. I think Dr. Sagan would be proud.

I can’t wait to keep watching it every week. I highly recommend it. And science. Thank you, Seth MacFarlane, Neil deGrasse Tyson, and all the other people involved in creating this brilliant, new, exciting, educational, network television show.

–Reid.

P.S. And, I guess if you can do it, math is probably not bad to learn as a helpful tool to use for a greater understanding of science. But I wouldn’t know anything about that.



Writing, Tweeting, Losing Sports Championships. Plus! Special Bonus: Is Being A Dictator All It’s Cracked Up To Be?
Monday February 03rd 2014, 9:28 pm
Filed under: Denver, Liberty!, Me, Myself, and Reid, Sodapopcornculture, Who Knows?, Word Nerd

I’ve been wanting to write a lot lately, but I have a pinched nerve in my neck. It’s referring pain down to my thumb and forefinger, through the ol’ carpal tunnel, which I believe Chris Christie conspired to close at some point recently, for all but two tendons. In lieu of writing, I tried dictating to Siri, but that just didn’t feel like writing. Because it wasn’t. It was dictating. If there’s one thing I know for certain about my skill set, it’s that I’m a much better writer than dictator (to which the good people of Sincostan can attest).

Then I figured out I could just mash at my iPad screen for an experience similar enough to writing, but without the pain of actually typing. So here I am mashing away! mashmashmash!

Last night, the Broncos were crushed by the Seattle Seahawks in the Super Bowl. As a Denver native, I am obviously a sad fan. I’ve been tweeting about it:

1) As a #Broncos fan, I feel just like Mitt Romney on Election Night. Winning: inevitable. Losing: ha ha! impossible! We’re fools, Mitt. Fools.

2) Hard watching #Broncos blow championship in a night, but way easier than watching #Rockies take four to do the same. Plus that was baseball.

To understand that second one, you need to know, first, that yes, Colorado has a Major League Baseball team (the Colorado Rockies) and that, second, yes, they somehow bungled their way into the “World” Series.

Going into the Series To Determine Which Team Is The Best In The World Despite Its Only Participants Being Based In The USA Save For A Single Canadian Team (how worldly!), the Rockies had won 21 of their last 22 games. Unfortunately, the Rockies’ opponent was a real baseball team, the Boston Red Sox. The Red Sox clobbered the Rockies in a “best of seven games” series. The Red Sox were best in all of the only four games that had to be played.

Finally, it’s worth noting that I find watching baseball to be incredibly boring. Not as boring as watching golf (how the hell can anyone watch golf?!), but pretty damn boring. That is, unless I physically attend a baseball game with friends. Then it’s a nice outdoor social event with a game of baseball going on in the background. You even have to stand up occasionally–it’s good exercise!

mashmashmash!

–Reid.

P.S. This was originally just going to be copies of my two tweets, but it kind of got away from me. Mashing seems to soothe my writing cravings.

P.P.S. “Sincostan” is the cleverest and only math joke I’ve ever written. Or noticed, that’s probably more appropriate. Come to think of it, Sincostan isn’t even really a joke. Unless you consider portmanteaus to be jokes. Which I know you don’t. It’s okay, my feelings aren’t hurt.

P.P.P.S. Huh. I don’t have a dedicated “Sports” category. I wonder why that’s never come up before. I don’t have one for “Math” either. Weird.



Please Allow Me To Fill You In.
Tuesday December 17th 2013, 2:45 pm
Filed under: Family, Friends, Health (Not Cancer), Leukemia, Me, Myself, and Reid

I’m on some very sedating medications and I’m not getting very good sleep. This is kind of a terrible combination. If you’re one of the millions of people that’s ever really wanted to experience what it’s like to be a zombie, without all the brain eating or getting shot in the head with a shotgun, this combination is totally for you!

I’ve been spending a lot of time in bed trying to get any kind of good sleep. The rest of my time has been spent not in bed, trying to act like I’ve been getting any kind of good sleep. This act requires not falling asleep in my soup, not falling asleep in anyone else’s soup, and talking in an energetic manner in which! I just imagine! that there are! ¡exclamation points! scattered throughout everything! I’m saying!! I’m a real method actor.

Anyway, being all zombied up has made writing difficult. It’s really made everything difficult. I’m not really doing much that I want to be doing, which is a lot less of what I want to be doing than I would ideally like to be doing. I’m not getting out of the house much, let alone my bed. At least it feels that way. When you’re a zombie, you kind of lose any and all sense of time. And my sense of time was really messed up before, anyway.

It’s possible I’m spending more time out of bed than I think and that I’m doing things like blankly staring off into the distance. But I’m definitely not doing much of the kinds of things I want to be doing, like writing, playing musical instruments, or, most especially, socializing.

I’m on these sedating medications because they help ward off the evil spirits that haunt me at night. It occurred to me recently that in previously writing about my inpatient EEG, I’m not really sure that I could have given any less important information. So here’s what happened:

-The EEG was performed to test whether or not I am experiencing cute li’l seizures in my brain that are causing hallucinations, which I may have previously referred to as “evil spirits that haunt me at night.” But that was mostly facetious.

-The doctors took me off my anti-seizure medications slightly warmer than cold turkey. They did it over two days, which did not help prevent withdrawal at all. Cold turkey would’ve been better, because it would’ve been faster and there would have been the exact same amount of irritating withdrawal effects. Also, “cold turkey” sounds more appetizing than “slightly warmer than cold turkey.”

-I had a lot of hallucinations in the hospital while my head was superglued to all those EEG wires (or were they superglued to my head?) that showed all the electrical activity going on inside my brain.

-The EEG did not register any abnormal electrical activity in my brain while I was having full-on tactile hallucinations. This means one of two things: A) I don’t have epilepsy or, B) my batteries were drained. Since the notion that I run on batteries is preposterous, the doctors concluded that I don’t have epilepsy.

-Not having epilepsy is unquestionably a good thing. I mean, there’s not really any reason anyone would say, “Aw shoot, I sure wish I had epilepsy,” except in the extremely narrow vein of, “Aw shoot, I still don’t know why I’m having hallucinations.” But I’m pretty happy I don’t have epilepsy, even if I don’t know why I’m having hallucinations.

-There are other kinds of seizures that are not caused by epilepsy. They can be just as l’il and cute and in the brain as epileptic seizures, but they can’t be detected by monitoring the electricity bouncing around the brain. In fact, there’s not any one super easy way to detect non-epileptic seizures. So… that’s kind of a bummer.

-At any rate, there’s really strong evidence to support the fact that I’m having seizures and that they’re causing my hallucinations. For instance, when I take an anti-seizure medication, my hallucinations go away.

If I can break out of the bullet points (I guess they’re really hyphen points) for a moment, I’m really tired and really need to go to sleep. I’m also having what feels like neuropathic pain in my fingers. It really hurts and is not something I can remember having since chemo. Anyway, I want to finish this tomorrow so I’m not going to publish it tonight. Evil spirits that haunt me willing, I will finish this tomorrow (it’ll be today to you). That’s the plan, anyway. Something else could always come up, like, say, staring blankly at a wall, but I’m really going to push myself to get this done.

You have reached the end of Side A. Please flip the tape over to Side B.

Welcome to Side B.

Well here we are in the future! And, look! I’m going to write the rest of this post! When I say it’s the future, I mean that it’s the future of me from yesterday, a guy who didn’t really have all that much faith in the me of his future in finishing this up today. Which is today. But here I am doing it, you jackass! Take that, Past Reid!

Sorry for all the super-advanced temporal discussion, I’ll try to tone that down for the remainder of this entry.

There are only a few more things I’d like to add about the inpatient EEG:

-A big group of friends sent me a brand new iPad to use in the hospital so I wouldn’t get bored. I can’t overstate how amazing my friends are. Not just because they send me material goods, but because they’re a big, huge safety net for me. While I’m tightrope walking between health, happiness, control and depression, loneliness, and confusion, I remain confident that they will catch me should I fall.

-They’ll be there because they’ll be rallied. Amongst my truly amazing friends, there are a few pillars that have made it clear they will never stop supporting me and that they will go out of their way to see to my well being no matter what. Friends from my very early childhood through friends from college and beyond.

-My family, my sisters and my parents, are pillars as well.

-I’ve been asked a few times lately if I’ve lost hope. Each time, I’ve considered the question very carefully. And each time, I think about these pillars. They give me hope. It doesn’t go away through all the confusion and depression and waiting, of which there’s a lot. I’m very lucky.

-The waiting is the worst. During chemo, there was something planned every day to eradicate my leukemia and make sure it knew it was not welcome to come back. Since then, I have had doctor’s appointments months apart, with no new help or guidance in between. Being sick in any way, mentally, physically, whatever, anything, and waiting is the worst.

-I think I spent more time in 2013 waiting for doctor’s appointments, test results, and important phone calls than anything else. I think, despite all that I’ve gone through in recent months in trying to deal with my hallucinations and immune system (and yes, I feel very much like “I’ve passively gone through” these things rather than “I’ve actively done” them), despite those things and all the scattered, delightful brief moments of joy in which I’ve been able to take part, 2013 has been the least productive year of my entire life.

-I will never, ever have a year like 2013 again.

-In January, I will be meeting with a doctor who specializes in non-epileptic seizures.

-In February, I will be traveling to Rochester, Minnesota to undergo a full health evaluation at the Mayo Clinic. It will be a comprehensive analysis of every nook and cranny of my body. The Mayo Clinic specializes in investigating what health problems people have that no one else can seem to put their finger on.

-In between now and those two appointments, I’m working with my psychiatrist, in whose care I feel very comfortable. He wants to get me better as much I want to get better. He is very skilled at formulating new plans and new ways to take on my problems, but also keeping me grounded so that I won’t be crushed if a new idea doesn’t work. He’s taken over the role of several of my other doctors, which I would say is not ideal. It’s not how the system is supposed to work. But, honestly, I’ve had several people on whom I relied this year let me down. Or, more appropriately, drop me from a great height, smack onto the ground, left to pick myself up and move on. My psychiatrist has been the antithesis of this. He’s done everything short of holding my hand, and I’m sure if I asked, he would.

-There are several other professionals that care deeply about me and my health. But I either barely or never saw them this year, simply due to the circumstances of the year. I look forward to getting back into contact with all these people in 2014.

In closing, I’d like you to know that I grew a mustache for Movember to raise awareness for men’s health issues. As Movember came to a close, I decided to keep my mustache, as it was described variously, by other people, as “dapper” and “societally acceptable, at least on your face.” So it’s still there. Right there on my face.

–Reid.



Sorry… I Think I Might Have Forgot To Tell You That I’ve Been Home From The Hospital For Awhile.
Monday November 25th 2013, 11:55 pm
Filed under: Health (Not Cancer), Me, Myself, and Reid

Actually, come to think of it, I definitely forgot to tell you that I’ve been home for over a week. Please forgive me and know that, more than anyone else, I am most sorry about this to you, whose opinion and trust is by far the most important to me of anyone’s that reads this blog. The good faith and trust of all those other peons that read my blog isn’t nearly as important to me as is yours.

Staying in the hospital was extremely exhausting, as anyone that has ever stayed in a hospital can tell you. Leaving the hospital was extremely painful, which I’m fairly certain is not nearly as universally true as the exhausting aspect of staying in a hospital. It turns out–get this–that all those electrodes they superglued to my head when I first arrived had to be removed before I left! I don’t recall anyone making even the slightest mention of getting all their equipment back until I was all dressed and ready to go.

But, hey, it’s fine, no problem, people forget to mention things all the time. It turns out there’s a very advanced, finely-tuned, and highly effective method of carefully removing electrodes from patients’ scalps, so as not to damage any of the electrodes’ sensitive receptors. I can only imagine this technique is a highly guarded secret taught, practiced, perfected, and passed down by its worthiest of practitioners. It involved two steps: 1) the electrode-removal-practitioner wincing, as if in painfully deep concentration, and then, 2) that person yanking really, really hard. I must boast that some of my skin victoriously stayed attached to my head, but, in the end, it was pretty much a total blowout on behalf of Team Superglue.

Okay well that’s it from me, I’m tired of this and I’m going to bed. Please note that honesty found in the preceding sentence is just the kind of hard-hitting truth you can always* rely on from Reid Levin Dot Com Dot Net.

I promise I’ll follow up this blog post soon by writing more about what happened in the hospital in regards to, uh… well, any of the medical reasons I was actually there in the first place. It wasn’t all Dr. Poison, Dengar, and jelly beans!

In fact, there were no jelly beans at all…! Bum BUM BUUUUUUUMMMM!!!

Yours truly,

–Reid.
Cliffhanger Writing Expert


*Legal Disclaimer: well, once in a while, anyway.



Me, My Brain Waves, And A Galaxy Far, Far Away.
Friday November 15th 2013, 8:07 pm
Filed under: Health (Not Cancer), Me, Myself, and Reid, Sodapopcornculture

This is me. I have a bunch of electrodes super-glued to my head that are connected to wires. You can’t see the wires or the electrodes because I’m wearing a hospital-issue turban so that I can’t scratch at any of the electrodes or pull them off my head. (I prefer the turban to the cone for which I was first fitted.) I’m also wearing a mustache in observance of Movember. Each day I’m in the hospital, the epileptologists are significantly lowering the doses of my anti-seizure medications so as to create “a big event,” which means a hallucination that both I and all the electrodes will experience.
Reid

This is Dengar. He was a bounty hunter that lived in a galaxy far, far away. He was hired by Darth Vader to catch Han Solo and the Millennium Falcon, but failed for reasons I can only assume were related to him experiencing some sort of seizure or hallucination-related problems.
Dengar

This is the device through which I’m being watched every moment of every day that I’m in the hospital. It has a camera on top that swivels around to follow me when I move. It also has a microphone, so as to catch me when I’m singing to myself.
The Machine

The Big Brotherly monitoring device sends all its feedback to a select group of highly trained people that constantly monitor whether or not I’m doing anything embarrassing enough for them to post on YouTube.
The Machine's Control Room

The device, by way of interpreting the information sent from the electrodes attached to my head, reads and shows my brain waves in real time. It also shows me slacking off in real time.
All Of Me On Display

The device’s name is Yoda. I don’t know who named it Yoda, but that’s it’s name. Yoda, like Dengar, also lived in a galaxy far, far away.
Yoda The Machine

I think that pretty much sums up today, except for the injections in my belly and the mechanical umbilical cord the device stuck in the back of my head so that I can enter The Matrix™. Thanks for all your ongoing support!

–Reid.



Hallucinations Are Severely Beating Me Up And Think They Have The Upper Hand For Some Reason.
Friday September 13th 2013, 11:47 pm
Filed under: Health (Not Cancer), Me, Myself, and Reid, Who Knows?

A few entries ago, I teased that I would post an entry titled “Hallucinations Slow Forward Momentum, But Fail To Stop It.” I wrote most of that entry before one of the very things I was writing about–that’s right, hallucinations–severely debilitated me. Although I still stand by the statement that these hallucinations haven’t stopped me from progressing, they have slowed me to, at best, the speed of molasses. Atypically slow molasses. Mmmoooooooolaaaaaaaaaaasssssseeeeeeesssss.

Earlier this summer, I began experiencing what I now know to be tactile and auditory hallucinations. That means I’m feeling and hearing things that don’t really exist (I’ll say it again: “stupid brain!”™). I’m not experiencing visual hallucinations, so I’m not seeing these unreal things I can feel and hear. I haven’t necessarily decided whether that’s a good thing or not.

Following the first hallucination I can remember from the summer, successive hallucinations gradually became more realistic and began occurring more frequently. They are now so realistic and are occurring so often that they are a huge distraction when I’m awake and when I’m trying to sleep. I’m having more sleep trouble than normal, which not only says a lot about the disruptiveness of the hallucinations, but is also the reason for my current constant, overwhelming exhaustion. Between the exhaustion and the distractions, most things that require any thought to do have become more difficult, especially things like writing(!!!), holding a conversation, and multivariable calculus (particularly Euler’s theorem on homogeneous functions).

I’ve been working with a doctor I really like and trust a great deal to figure out what’s causing these hallucinations. The initial theory was that the hallucinations were a side effect of a new medication. When I stopped taking that drug (under the supervision of several doctors), the hallucinations went away, only to return a week later, far more pernicious than before. There are more current theories as to what may be causing them, but they all require a neurologist to run various tests my nervous system and on my brain.

That is specifically delaying us because I haven’t been able to get an appointment with a neurologist before mid-October. My mother, Mom, has waited both on the phone and by the phone for great long chunks of time for opportunities to hopefully get me into a neurologist sooner than mid-October. I remain confident that I’ll get checked out before then, one way or another.

The only thing I’ve found that really keeps the hallucinations at bay is distraction. Simple, mindless things like making lists or organizing things seem to work for a while. However, the best medication remains spending time with friends. Even if I’m exhausted and can’t quite think straight, being with the people I love and enjoy most seems to send those spectres back to their own dimension for a few hours, which comes as very welcome relief.

This was way more than I thought I could sit down and write. And now, since I can’t think of a good conclusion, I’ll just say this:

Stop touching me.

Thank you,
–Reid.



Friends, Weddings, Happiness, and Health.
Saturday August 24th 2013, 5:51 pm
Filed under: Family, Friends, Me, Myself, and Reid

I am truly blessed to have so many great friends in my life. It only makes sense that great friends are also great human beings. Naturally, a lot of those great human beings gravitate towards one another as friends, collaborators, and spouses. Over the past several years, I’ve had the honor of attending many weddings and celebrating with many great friends as they married many equally great human beings.

I’ve written before that friends are my drug of choice. When I’m among friends, I am filled with an energy that is otherwise absent from my life. I am more powerful when I have friends around me than when I am alone. Their presence is extraordinarily addictive, lifting me up mentally, emotionally, and physically. I feel wanted and understood and inspired and happy. Who wouldn’t want to feel that way all the time? Eventually, though, without exception, at that inevitable time when we are forced to part and go our separate ways, the tremendous high I get from my friends turns into an intensely bitter withdrawal.

Reuniting with groups of friends is my ultimate motive for attending weddings. I’m sorry, brides and grooms, you’re obviously very important on your wedding day, but what you do best is give the rest of us a reason to celebrate. And what better way to celebrate than with people we love. With friends we don’t see anywhere near enough in our daily (or, too often, yearly) lives. And, yes, celebrating the union of two great human beings. All in an atmosphere ambient with overwhelmingly positive feelings: happiness and friendship and fun and love and togetherness and, maybe most of all, a shared confidence in a wonderful tomorrow for our two great friends.

Despite all my health problems, I’ve attended almost all of my friends’ weddings (though I’ve mostly steered clear of the ones to which I’ve not been invited). I missed Sarah and Tucker’s steampunk wedding a few years ago, for which I’d grown out my chops accordingly. I missed a joyous reunion with friends and with New York City because, for all the energy I spent pushing myself to be there, for all my immense desire and want to be there, my body wouldn’t give. I was just too sick to go.

I’m missing another wedding right now for the same reason. Melissa and Ryan were supposed to be married in Yosemite National Park today, but due to forces beyond their control, they had to move to another location. I’m confident that, though fires drove them from Yosemite, today will be a beautiful, wondrous day. Surrounded by their friends and family, who have gathered to celebrate that bond of love, support, and loyalty that transcends any specific place on a map, to which Mel and Ryan are committing themselves. There is no question that the celebration of their union will be just as grand, that the love and friendship of their guests just as strong, and the pact to which they are both committed just as powerful as it would have been in Yosemite.

Such purely happy moments are emotionally and physically painful to miss. It’s always tough missing bachelor parties and rehearsal dinners. It’s always tough being on the first bus back to the hotel when the party’s just begun. It’s always tough not being a part of the post-wedding antics, whether they’ve taken place in bars or sub shops. Those antics go on to become the stories that are told over and over and over because they’re the best stories. They’re the stories of friends coming together and, after all the pomp and circumstance, being themselves. Being comfortable with one another in a way that only the best of friends can be.

I wish I was a part of all of those stories. I wish I was feeling the high of the energy created by being with my friends today. I wish I could be with Mel and Ryan, celebrating their awesome life event. As sad as it makes me that I can’t be a part of any of those things, I know that today is a happy day. Two great human beings are becoming one whole. There’s nothing better that I could wish for these two great friends.

And so I choose to be happy today. For Melissa and Ryan. For all the guests that are able to reunite because of that special commitment Mel and Ryan have made to each other. And for me, because I realize that having great friends means there will always be more shenanigans that one day turn into the stories we tell over and over and over forever.



Being Ill Is Kind Of A Bummer, Sick Man Reveals.
Friday August 16th 2013, 12:12 am
Filed under: Health (Not Cancer), Me, Myself, and Reid

I’ve been sick all week, which has been something of a bummer. I planned several small projects this week that didn’t even get off the ground. I find this especially frustrating as someone that gets sick a lot. When I’m healthy for several days in a row, I tend to get ahead of myself and begin formulating plans for upcoming continued days of feeling well. Those days don’t always come, so I often feel like I’ve just set myself up for disappointment. I’ll admit that it’s really nice when it works out, though.

There are things that are worth plowing through illness to do. Unfortunately, I find that ignoring an illness to do even the most worthwhile of activities usually leads to that illness becoming really angry. I wasn’t taking it seriously enough, I couldn’t be bothered enough to pay attention to it, I never even told my friends that the illness was living within me, that sort of thing. So the illness decides to show me what it can do when it really wants to make me sick. Some illnesses are really needy.

As long as I don’t fall into a habit of not writing every day I feel sick, I’m moving towards thinking it’s a fine reason not to write some days. I like writing more than I like not writing, but things like debilitating migraines, sinus infections, and bears make it very difficult to do at times. Well, difficult to do coherently, at least. I could definitely express how I feel when I have a debilitating migraine if only wasn’t bound by my oath to uphold The Rules Of Grammar™ (*sound of thunder crashing*)!!

1q2w3ersdtcyvu[;’l,mknjbh[sdwem0f19mafjw90d[p;’.,s0ew99w..ea

Just like that! Except… that looks strangely similar to the entry I’d write after jumping out of being pushed out of an airplane. I might as well continue using spelling and punctuation and words and thoughts when I feel up to writing. I don’t think I’m really ready to have an avant-garde blog showcasing long strings of random characters I smursh out of my keyboard when I’m not feeling up to grammar.

Speaking of migraines, I saw my new neurologist today. It was a great experience. I didn’t dislike my previous neurologist at all, but, in going to see this new guy, I feel like I’ve been called up from a high school league to the majors (some sort of sports metaphor, I think). The new doctor was super thorough, great at answering questions, and helped connect several outstanding dots (turns out when they’re connected, they look like a pony). He’s already got me started on something to help my migraines that doesn’t involve more pills! It’s been amazing to realize several times over the past few weeks just what it feels like to find the right doctors.

Forward momentum continues! More details soon.

I’d love to write more, but I’d better head to bed. This illness is already pretty upset with me and I don’t want to piss it off anymore. After all, I’ve gotta live with it.

–Reid.