Writing And Not Writing.
Wednesday August 14th 2013, 12:41 am
Filed under: Me, Myself, and Reid, Word Nerd

I started writing this on Saturday, but ran into a self-imposed deadline. I decided to finish it tonight.

1) When something impacts my life in any sort of meaningful way, one of my first instincts is to write about it. Recording important moments and events through writing is a way for me to preserve my state of mind, something that wouldn’t necessarily be the case if I looked back at my calendar to help me recall things that happened. Even a video of such moments only captures so much. There’s a very important extra dimension to all noteworthy things in life that I know, if not preserved in writing, I would surely forget.

2) I find writing very therapeutic. Editing and rewriting contains happy moments when various ideas come together, things I didn’t realize had any connection in my first draft. Building these connections, snapping them into place by moving a sentence around or by adding a word or two is very rewarding.

3) By the third or fourth edit, my writing is almost pure anxiety. My constant need to fix and change and add and better every detail is overwhelming. Even though my anxiety manifests itself physically, causing me to sweat and tremble and growl and bang my head, it’s been very difficult for me, over the past few years, to stop myself from over-editing and rewriting entire pieces over and over again.

4) All of that anxious rewriting is to blame for several years of only a trickle of my writing appearing here. I’ve written volumes, entire epics that I’ve torn to shreds and written over and over again. I have nearly as many unseen drafts from the past three years as I have posts from the past six years.

5) I’m not under the impression that anything I write here will launch a career or vault me to superstardom. That’s not why I write in my blog. Why then, the need for perfection? There are not many things I’ve felt I could control in my life over the past several years. My blog is one thing over which I have complete control, even if I can’t control the OCD that overtakes me once I start editing and rewriting. I’ve had help coming to this realization.

6) Since I’ve started back up again, I’ve set rules for myself. They’re definitely helping me not go insane to finish writing posts I start. I’m spending much less time editing and rewriting because of time limits. The hardest thing has been reading each post after I’ve made it public and then not going back and editing it.

I always, always see sentences I want to rewrite and little jokes I could have worded so much better, not to mention the occasional misspelled word and vagrant punctuation mark. Why is there a comma in the middle of that word?! Usually the answer is–and I’m not ashamed to admit this–I have an addiction to commas. I NEED MORE COMMAS HERE AND LESS OVER THERE TO BALANCE OUT MY COMMA KARMA!! But, ultimately, I’m pleased that I’ve managed to stick to my rules so far.

7) I cannot think of anything from my life that I’ve been too self-conscious to write about in this blog. Perhaps I am very open about my life or perhaps I just can’t remember those particularly personal moments I chose not to write about. All the more reason to write as often as possible!

8) Despite my feelings of openness, there is a part of my life I have always had trouble writing about here. When other people’s personal lives are involved in my personal moments, I hit a barrier. For instance, I never wrote about my break-up with my girlfriend of nearly a decade on here, and I probably won’t ever do so. I haven’t written about some critical family situations that have occurred over the past year. (even writing those last two rather unspecific sentences was very difficult for me)

These things have all majorly impacted my life and have played roles in continuing to define who I am. But, ultimately, they present a barrier I haven’t been able to cross. I’m trying to figure out a way to confront this that doesn’t make me feel that I’m outing other people’s most personal moments. I need to find a way that’s comfortable for me to write about these things, because not writing about them has left some very big unwritten holes in this blog.

–Reid.



I’m Sick, I’m Going Off Meds, and Going Off Meds Is Making Me Sick.
Monday August 12th 2013, 10:39 pm
Filed under: Health (Not Cancer), Me, Myself, and Reid

During chemo, I was put on a whole bunch of painkillers because I was in a whole bunch of pain. I still have a lot of pain, but it doesn’t usually compare to the levels of pain I experienced during chemo. It gets that bad sometimes, though, and when it does, it’s harder to be positive about it. It was easier to be positive about the pain when I knew it was from the chemo that was destroying my cancer, when I knew the pain was a side-effect of saving my life. But I’m not fighting cancer anymore. The chemo did its job and left my system a while ago.

Once chemo ended, I wanted to start getting off all these painkillers, posthaste. While they do a fairly decent job of killing pain, they are also very addictive–even when used responsibly. My brain (and probably yours and everyone else’s brain), as it turns out, is really, really dumb. When it comes to pain medication (and probably drugs of any kinds), our brains act like small children. They’re thrilled to play with cool new chemicals they’ve never seen before, chemicals they quickly decide they absolutely must have and that belong exclusively to them and that they want to play with all the time and that they’ll scream bloody murder and kick you over and over and over if you try taking away from them. Our brains never wanted these chemicals, they were totally fine without these chemicals, and, in fact, they didn’t even know these chemicals existed. Addictive drugs fill a need our brains never knew they needed… just like iPods.

Despite my ongoing pain, I’ve really wanted off of these meds for way too long. I can’t simply stop taking them, because my brain will throw a temper tantrum of gigantic proportions and I will not be able to tolerate that for very long. I need help getting off of these meds in a healthy way that fools my brain into being happy with smaller and smaller doses until it forgets about the meds and moves on to play with something else. I can’t do this by myself, which is a big reason I have pain management doctors. There are tons of side effects to these meds, including keeping me in constant mental fog that doesn’t allow me to think clearly, screwing with my memory, and flat-out preventing my use of other meds I should be taking (such as migraine recovery medication).

Withdrawal is the problem I face. It’s the brain’s temper tantrum. To be clear, I’ve never abused any of the drugs I was prescribed–normal, doctor-order medical use is what led to my body’s addictions. For years, I’ve told my pain doctors that I need their help to get off of these medications. For years, I’ve received two responses:

1) “If you go off your pain medications, you might have pain.”

While this is true, there’s really only one way to find out: go off of the pain medications. If I have more pain after I’m off the meds, then we can deal with that problem. Preferably by some non-addictive means. Ironically, if I wasn’t on these pain meds, there are so many other kinds of medication I could use to potentially help manage my pain. Not to mention biofeedback techniques that don’t involve any medication at all, such as mind-body imagery, targeted breathing, and good, old-fashioned meditation.

2) “It’s really not a bad thing to stay on these drugs your entire life.”

This might be true for some people. If there are people that can take painkillers responsibly for their entire lives without feeling that they’re impaired cognitively, emotionally, or physically, well then, bully for them! Seriously, that’s great. But I have felt like my mind is only partially in this dimension for almost six years now. I feel like I’m floating, like my head is in the clouds, and that clouds are in my head. Lots of clouds. So many clouds. Really, really dense clouds. And I don’t want my head anywhere near clouds anymore.

Earlier this summer, I finally decided to just tell my pain doc that I was going off of one of my pain meds. She questioned my decision, she tried to convince me I was wrong, but, in the end, she gave me her blessing. Her blessing was mostly meaningless. She told me how much I could stop taking at a time, lowering the dose of medication I was taking until I was taking none. This is important information, but it’s more hypothetical thinking than any sort of actual in-the-field working plan.

I’m currently going off clonazepam–a powerful muscle relaxant, also used to control seizures and anxiety–which is known as klonopin to its close friends. It was prescribed to me when the ulcerated, necrotic, radiation burn on my back was causing muscles throughout my abdomen to seize up, causing extraordinary pain on top of the constant pain that came from having a huge, complicated burn on my back. I underwent surgery that removed that burn nearly two years ago. There was recovery from the operation and I still don’t have feeling in several places on my back, but it’s been awhile since I’ve had the problem for which the clonazepam was originally prescribed.

It’s been a battle getting off this stuff. Some days my body shakes uncontrollably, some days I have anxiety attacks, some days I feel itchy all over, and on a lot of days I just don’t feel like myself. My body is rebelling against me, against what’s best for it. I’m fighting through this rebellion because I’m determined to reach my goal of being off all these painkillers. In the meantime, my brain is throwing temper tantrums about not having as many cool chemicals to play with.

Stupid brain.

–Reid.



I Didn’t Post Anything Yesterday And It Turns Out I’m Okay With That.
Sunday August 11th 2013, 11:12 pm
Filed under: Health (Not Cancer), Me, Myself, and Reid

I gave myself a very specific time limit to write last night, and once I hit it, I closed my laptop and went to sleep. I’m proud very proud that I was able to stop writing. Normally, I’m great at beating myself up. If there was a “Beat Reid Levin Up” contest, I guarantee that I would win. It’s never something I consciously think about doing, it just happens. Often times–probably most of the time–it doesn’t even make logical sense.

For example, even though there are clearly hundreds of medical tests that scientifically prove that I’m sick, I will often give myself an extremely hard time about being sick. You’re so lazy! Why don’t you get out of bed? Why don’t you try to accomplish something? Are you really even sick? Just like that, in the second person and everything. And I don’t really fight back.

It’s part of my automatic thought process and it has been for a long time. I’ve been actively trying to change this for several years now. It turns out that it’s really hard to change the way I (and I’d suspect most people) think. I don’t mean changing what I think about things like people and issues, rather, changing how I actually think–changing my inner monologue. The goal of this difficult push has been to allow me to cut myself some slack. Even when I had cancer, I’d constantly think, You’re not contributing anything to society! So I’d do something to prove myself wrong, which made me sicker, which discouraged me to no end, at which point I’d start it all over again. It was a bad cycle, and is often still a bad cycle.

All that is to say is that I’m really happy that last night, I didn’t think to myself that I had to finish a post. I didn’t think that if I didn’t post something, I’d be letting myself down. I didn’t reflect on the situation and tell myself that I was lazy. I just accepted it. And as happy as I am about this, I’m also very surprised. This is the first time in a long time that I was able to simply accept that I’d reached a boundary I’d set for myself and that’s all it was. There’s nothing else to read into what I’d done. It was what it was.

I’ve lost count of the number of times I’ve tried to stop writing by a self-imposed deadline, only to have it turn into something terrible and scary. I’d try to go to sleep, only to be consumed by thoughts of how terrible it was that I couldn’t finish what I started. I’d get out of bed and write some more, and then get mad at myself for breaking my time limit. And so it would go, on and on and on, until I was too exhausted to get out of bed. The scary part is always feeling like I’m not in control.

I was worried about it last night. I was keenly aware of my looming time limit and I had a twinge of fear about how I’d react to not finishing something by my deadline. I turned out to be just fine with it. It seems to me that the unexpected feeling of being okay with it is an indication that I’ve begun to change the way I think. I was truly surprised by my own thought process.

One of my goals with writing again has been to let myself off the hook. I don’t think I’m cured of this in any way, or that I’m anywhere near having completely changed the way I think. I’m only in the very early stages of changing these things, but it feel really good to know that I’ve started making progress.

Another goal was to write and not get caught up in edits and rewrites, because that has kept me from posting consistently for the past two years. I want to go back and change the structure of this post, I want to add in a few jokes, I want to take out some repetitive ideas… but I’m not going to.

I’m going to sleep.

–Reid.



Good Immunology, OCD, and Blogging!
Wednesday August 07th 2013, 3:10 pm
Filed under: Health (Not Cancer), Me, Myself, and Reid

1) I have not posted in my blog for a long time due to my OCD. I’ve still been writing a lot about my life, but I haven’t been sharing any of that writing it here. In an effort to push through the anxiety-inducing obstacle of my OCD, I’m going to try to post short blurbs here regularly (short for me, anyway).

2) I had a terrible, horrible, no good, very bad experience with a fake immunologist at the end of June. He crushed my spirits and I think he felt really good about it.

3) Overall, I’ve been feeling pretty good for the past week-and-a-half, which might be some kind of new record. I saw a new immunologist last week, who was great. He’s definitely the right person for me to see.

Tomorrow, I’m going in for a lot of really diverse tests so that he can get a fuller picture of what’s going on inside my body right now. I feel like I’m finally moving forward (coincidentally, my favorite direction to move) after well over a year-and-a-half of feeling like the recovery my health had plateaued. I’m extremely happy with this doctor and the entire situation, which is not a way I’ve felt in a really, really long time.

That’s all for now! I’m totally not having a panic attack about leaving this as is and not going back and adding things and over-editing it and rewriting the whole thing and AAAAAAaaaaokay…

Loveyoubye,

–reid.



You Can Comment On My Blog Again! …whoops!
Thursday July 19th 2012, 8:12 pm
Filed under: Me, Myself, and Reid, Technobabble

D’oh! Somebody apparently turned off the commenting system on my blog (you are here) at some point and never turned it back on. I’ve turned it back on, so please, go ahead and engage in whatever type of commenting your heart desires: criticism, condemnation, and/or cutting me down to size.

I apologize for any inconvenience you or your loved ones may have experienced as a result of the comment system being offline. The offending Reid Levin Dot Net administrator has been slapped in the face.

Ow.

–Reid.



On My New Blue Titanium Ear Tube, Facing Down A Lion, Channeling Hemingway… and Writing.
Friday July 13th 2012, 5:24 pm
Filed under: Family, Health (Not Cancer), Me, Myself, and Reid

On Wednesday, I had an ear tube installed in my left eardrum. The inside of my left ear has been giving me trouble since at least the time I underwent hyperbaric oxygen therapy. Maybe the HBOT is to blame–it was, after all, a giant pressurized chamber that got its jollies by making my ears adjust to pressure in a way that sounded and felt like they were filled with active poprocks. Maybe it’s been bothering me longer than that, maybe even since before chemo.

Or maybe that popcorn kernel I stuck in my ear when I was six-years-old has finally taken root in my brain and grown into a popcorn tree. That would be a just and fitting bite of karma for having accused my sister Rachel of popping that kernel into my ear and then successfully getting her convicted of said crime by my mom. Many years later, I did finally admit that it was, in fact, I, Reid Levin, who had perpetrated the insertion of the kernel into my own ear. I did so out of an extreme guilt that built up over the course of decades, day in, day out since the day Rachel had been punished for the absurdly stupid crime I, myself had committed! Actually, I’d done it before several times, that was just the only time I wised up and blamed someone else. Umm… sorry about that, Roo…

Truly, it could be any one of those things! While my memory has improved tremendously in some areas (presidential trivia, names of obscure Star Wars characters, a third example), it still kind of sucks in some pretty major areas. For instance, “Have I showered today?” and, “Have I showered this week?” Or, often, “Was I really supposed pick you up at the airport? Really?” And most especially, “When did my ear start giving me so much trouble?” (Note: admittedly, there are many better examples I could use for things “most especially forgotten”, but a) I don’t remember what they are, and b) that troubled ear example there helps propel a narrative that fits a theme I’m going for in this particular blog entry.)

For whatever reason, the inside of my left ear has hurt badly enough off-and-on that I’ve seen several doctors about it. Almost every time my ear was examined, there was no visible problem. I only say “almost every time” in case this is ever fact-checked. Knowing me as I do, there were probably some actual infections, but I am not qualified to comment on that subject at this time. In addition to the on-and-off pain, I noticed that, when ascending or descending in an airplane and when driving to different altitudes in a car, my left ear didn’t equalize pressure in the efficient manner I think I kind of remember it doing back sometime in the past. In fact, it was failing miserably at equalizing. Also, I was diagnosed with mastoiditis on two separate occasions this year, after never having had it before in my life.

If you’ve never heard of mastoiditis, it’s probably not because you’re stupid (although I can’t be sure, I’ll give you the benefit of the doubt). Mastoiditis is an infection of the hollow bone behind the ear (the mastoid) that swells up and forms an abscess. It’s likely something you’ve not encountered if you’re a human being currently living in an industrialized nation in a year after 1941. What happened in 1941? Doctors began using penicillin to cure ear infections. Mastoiditis generally occurs after an ear infection has gone untreated for a long time–long enough for the infection to spread to the mastoid. So all sorts of people that existed before 1941 got it whenever they had a bad ear infection, and hardly anyone that has access to antibiotics gets it now.

So how did I get mastoiditis? Twice in one year, no less? Isn’t that just soooooo weird? No, no it’s not. In fact, it’s one more super exciting, fantabulous head-scratcher you can only find in The Big Book Of Reid Levin Medical Mysteries (Vol. 1)! You’ll just have to buy the book and read page 1,928 to find out what happened. It’ll be on Amazon soon. In fact, if you pre-order the hardcover, I’ll sign it and send you some of my weird germs for absolutely no additional cost (plus shipping and handling).

Last month, I finally visited a neurotologist to have my ear thoroughly examined. A neurotologist is a person who decided, after spending four years as an undergraduate, four years in medical school, five years in an ENT residency, and maybe like another two years or something of a fellowship working specifically on ear stuff, that they weren’t quite ready to get on with their life. So instead, they hung around medical school for another two years studying neurological ear problems. Apparently, this particular neurotologist also took a course on how to make patients wait obediently in the waiting room for several hours after their scheduled appointment time. Though, I think that particular course actually counted as business credits, rather than science credits.

Anyway… after waiting for two hours to see him, the neurotologist talked to me for nearly three minutes and then sent me off to get a CT of my head, which has clearly not had enough radiation zapped into it already. (Though, of course, it was something I understood and for which I agreed there was a need.) The following week, the CT was performed to determine whether some past ear infection had moved into my mastoid, stayed there like a deep cover sleeper agent, and eventually grown large enough to scar the semi-fragile, hollow mastoid bone, causing it to separate from my ear canal. That, or anything else weird. But mostly that. I waited three days after the CT to meet with the doctor again and to learn the results of the scan. This was necessary because, instead of using computers, this doctor’s office receives all of its data by courrier. And, apparently, their courier rides a fantastically slow horse.

After another two hours in the waiting room, I met with the doctor again–this time for almost five whole minutes. He told me that my ear looked beautiful (awwww yeah!) on the CT scan and that he couldn’t see anything wrong with it. But he was certain something was wrong with my ear, he just couldn’t be positive about exactly what it was. He proposed surgically implanting a teeny, tiny little tube in my eardrum, which would act as both a diagnostic tool and, perhaps (hopefully), an antidote to the pain. If my ear felt better with the tube in after a few weeks, we’d know that the problem was my ear’s inability to correctly regulate pressure changes and, the tube, itself, would actually alleviate this problem. If my ear did not feel better after several weeks with the ear tube in, all I would have to show for it would be a totally rad blue titanium eardrum piercing.

When I was four-years-old, I had ear tubes put in both of my ears due to chronic infections. I had my tonsils and adenoids removed during the same operation, in what turned out to be a successful plan to make me less prone to ear, sinus, and throat infections. That lasted… a few years. For those particular surgeries, I was put completely under. However, it turns out that as an “adult,” you aren’t put under to have ear tubes implanted. They just numb your eardrum right there in the office, make a small incision in the eardrum, and pop that little tube right in. On some other day.

For weeks, I was dreading this in-office outpatient surgery. I knew that once my eardrum was numbed, the rest of the procedure wouldn’t hurt. However, the thought of having a local anesthetic jabbed into my eardrum with a needle scared the hell out of me. I know I’m not supposed to stick ’em in there, but I’ll just come right out and admit that while cleaning my ear out with Q-tips, I’ve had the displeasure of bumping my eardrum more than once. As much as that hurt, how much more must a pointy needle hurt? As the date of my ear tube insertion grew ever closer, I became more and more scared. But I had to go forward with it, I had to try, because it might make me feel better. I arrived at the doctor’s office a full 15 minutes before my scheduled appointment time, as they requested, and then proceeded to wait nearly two hours… to have my eardrum stabbed.

I was finally called back to the ear piercing room, where I sat waiting for another half hour. I grew more and more apprehensive each moment, until Rachel texted me about the doctor’s questionable management of time. In drafting my response, I set out both to allay my fear and to fool my younger sister into believing I was much more comfortably resigned to my situation than I really was. I responded by framing my feelings in a manner that I imagined the manliest writer I could think of, Ernest Hemingway, might have done:

I found myself with an extra hour and a half to do nothing but panic. Every time a nurse opened the waiting room door, in the long moments before she called out another patient’s name, my heart beat as if I were facing down a great lion. This panic served no purpose though, as, with or without it, I would inevitably be called upon to wrestle down the mighty beast.

And I was. And I did. It happened. Wrestling the mighty beast was filled with very unpleasant feelings and sounds. The doctor injected a powerful anesthetic into my eardrum, which hurt. This particular anesthetic did not simply block pain, the doctor explained, it actually killed nerve endings that will need several weeks to grow back. He then made an incision in my eardrum and, into the resulting opening, stuffed a super awesome blue titanium ear tube. Throughout the procedure, it sounded as if someone was doing a mike check in my brain.

Afterwards, I received another text from Rachel, asking how the procedure had turned out. In an effort to avoid sounding like my actual, embarrassingly squeamish self, I once again imagined myself channeling Hemingway and responded:

In the end, it was a fine thing. The lion was more docile than I had built him up to be. Nonetheless, he was still a lion.

While riding home with my sore ear, I considered whether or not either text I’d sent actually reflected how Hemingway would have described the situation. Because that’s the kind of thing I do. I realized that I was way off, that I wasn’t even close. Hemingway never would have described his fear in such terms, because Hemingway wouldn’t have had any fear in the first place. He’d have relished the opportunity to show off his machismo and would have equally revelled in fighting the lion head on. When I realized this, Hemingway’s text became so obvious:

The lion is a fine animal. He is not afraid or stupid. He does not want to fight. But man is not made for quiescence. Consequently, I punched the noble beast squarely in his testicles.

Hemingway may have been a brilliant writer, but he was also kind of a jerk. Poor lion.

I hadn’t really thought much about Ernest Hemingway in a while. In high school, I didn’t care for his books at all. In fact, there weren’t many books I cared for–there were so many poorly chosen “classics” we had to read. There were some books that few teenagers will ever appreciate, and many others that make me question who exactly determines which books are considered “classics.” In college, for Better Than The Machine, based on an idea by Tucker Dyer, I developed an Incredible Hulk-like “Incredible Hemingway” character, who transformed from an ordinary man into a hefty drunk writer that enjoyed fishing. He appeared in a sketch I wrote called “The Old Man And The Seaport.” After the Incredible Hemingway and after college, I read and reread a lot of the real Ernest Hemingway’s work and came to appreciate it.

Trying to write in Hemingway’s style for the texts to my sister was basically a joke about manliness. But it got me thinking a lot about the man, himself, again. Specifically, one of the greatest things he was ever quoted as having said:

There is no rule on how to write. Sometimes it comes easily and perfectly; sometimes it’s like drilling rock and then blasting it out with charges.

With those words echoing in my head, I knew it was time to get back here to my blog. There have been other times I thought were right to get back into writing my blog regularly. But those times, over the past nine months, only led to a ridiculous number of unfinished entries. I’ve had such trouble writing for what feels like forever. For a time, it sustained me, mentally and emotionally–and it came so easily. 2012 has been a year of false starts with titles like “2012: A Fresh Start,” “One Year On: One Year Off Chemo,” and “P/SL Nurses Tried To Kill Me.” They’re all very important to me, and they contain information I’d really like to share here. There have been a lot of really great things, important developments, and difficult challenges that have been a part of my life, but are missing from here.

Writing about everything that was going on got me through chemo. But I think I had to live for a while without critically evaluating the major (and minor) events in my life. I think there was just a big period of time that was wrong for writing. That time is coming to an end. Sure, I hope I’m able to use writing to once again get me through challenges and woes. But, the truth is, I love writing and I’ve really missed it.

We’ll see how my ear does. In the meantime, thank you, Mr. Hemingway; I think the time for blasting has finally come to an end.

–Reid.



Four Years Alive.
Wednesday December 07th 2011, 11:59 pm
Filed under: Better Than The Machine, Denver, Family, Friends, Leukemia, Me, Myself, and Reid, NYC

On the evening of Thursday, December 6, 2007, my mom was driving me home from The Children’s Hospital in Aurora, Colorado. We were discouraged. The whole reason for my flight home had been to get checked out at Children’s by Dr. Glancy’s successor. But I hadn’t fit into the pediatric MRI machine because my shoulders were too wide. They had been able to draw my blood, but that was more of a formality, and very unlikely to tell us anything. Tomorrow, we’d find an adult MRI machine, get me imaged, and hopefully get me into the doctor. It was so frustrating, having come all this way to be seen today, only to be delayed. Especially because we knew the problem: the reoccurring nonspecific benign lesion in the bone of my upper right arm was back again.

For months, I had been trying to get doctors in New York City to x-ray it, to diagnose it, and to treat it, but every orthopedist I went to see thought it sounded too much like cancer. I kept explaining that I had had this thing in my the same exact spot in my right humerus before, and that my orthopedist back home had removed it three times before. During each of the surgeries, pathology had been run on what was taken out of my bone, and each time, it was pretty inconclusive. But one thing had been absolutely certain each time: it was not cancer.

The first operation had been when I was twelve. I had shattered my arm playing basketball. Not because I ran into someone or because I twisted my arm in a weird way while shooting the ball. Evan had lightly tossed me the ball from a few feet away, and that light force had been strong enough to create multiple hairline fractures in my arm. It turned out there was this lesion in my humerus that had been growing from within the marrow, outward, eating the bone until it was paper thin. I remember feeling pain in it years before that, when I was even younger; once when I was reaching for something under a cabinet, and another time when I stretched my arm way over my head. Looking through old x-rays in which my right humerus happened to appear, it looked like the lesion had been growing there for a long time. Or at least as long as my humerus had been sneaking into x-rays of other things like my lungs and my elbow.

I was twelve at the time, in the seventh grade. I went to the Children’s Hospital, and was seen by the head of orthopedics at the time, the great Dr. Gerard Glancy. He ended up operating on that same unspecified, non-cancerous lesion three times: that first time, when I was twelve, then when I was fourteen, and again when I was nineteen. Each time, this thing, whatever it was, had been definitively referred to as “dead.” It was not an active infection of any type, and it definitely wasn’t cancerous. But it kept coming back. It was confusing to everyone involved: to Dr. Glancy, to the pathologists, to my family, and to me. But I guess eventually we just came to accept it as that weird thing I had.

The orthopedists I visited in New York City did not see it that way. To them, my tale was dubious, at best. It sounded like cancer to them. I tried to explain, it wasn’t cancer–it definitely wasn’t cancer–it was an unspecified benign bone lesion, and if they’d just cut it out, I’d really appreciate it. But they didn’t even want to look at it, they didn’t want to x-ray it, they didn’t want to examine me. I was frustrated and upset and tired. I had been trying to deal with this thing since around my birthday at the end of July. Months went by, and the pain in my arm became so intense that it was keeping me awake at night. That pain and lack of sleep, in turn made me constantly fatigued and sore all over.

Early on, I had found myself a new primary care doctor, as my old one had moved out of town since I had last needed to visit him. I think I picked her because her office was within walking distance of my apartment and when I Googled her name, there were no negative reviews on the first page that came up. She always seemed very keen on helping me get well, but she herself very rarely diagnosed or treated any of my problems. It was on her recommendation that I visited many of the orthopedists who tossed me out. To her credit, she did send me to get the only x-ray taken of arm during this entire debacle, though, to her detriment, it was, for some reason, taken at a shady lab, where no one checked to make sure it was useful. Those few doctors that actually agreed to look at the image thought it was too dark and blurry to determine anything. As I was repeatedly turned away from doctors who didn’t want to so much as take the responsibility of even suggesting a different course of action to get help with my arm, my primary care doctor was finally able to treat me for something that had likely come about due to the stress and anxiety of trying to deal with everything: two long bouts with pneumonia.

Just after Thanksgiving, my dad flew Better Than The Machine to Colorado to perform at his 50th birthday party. For the first time in my life, the altitude got to me. I had been away for longer than I’d ever been away before. That made me sad, because I always made fun of people who couldn’t handle the altitude. Just tremendous amounts of fun. Take that, you sea-level dwellers! But now, here I was, exhausted and hurting. My arm was no help. I was trying to drive the group around in a mini-van, but had to turn them over to my sisters a few times because I was so sore. We had a great performance at my dad’s party, but for the first time ever, I had trouble singing “Give A Shit,” our big musical finale. My voice cracked and squeezed, which pissed me off for the rest of the night. I’d sang my heart out to crowds who wanted to rush us off stage before, but I couldn’t sing in front of my dad’s friends. After several days, I returned to New York with the rest of the group.

My arm only got worse. I didn’t really know what to do. One night, I finally walked over to the ER at Columbia Hospital and waited for 9 hours to be examined. The doctor told me to go home and take two Tylenol. I walked outside and called my mom. She told me she had talked to Dr. Glancy and had sent him a copy of the dark, blurry x-ray my doctor had taken. Although he wasn’t actively seeing patients anymore because he was in the process of retiring, Dr. Glancy took a look at the x-ray and thought it looked a bit suspicious. He had been able to see all tiny fractures in my arm when it had first broken all those years ago, and once again, he seemed to be the only one who could see something wrong now. He told my mom that if she flew me home, he’d see to it that someone with a full understanding of our background together would see me as soon as I got into town. It was a very nice offer, and it was tempting, but it seemed sort of ridiculous. I had only been back in New York for a few days–there had to be an easier way of dealing with this than flying back across the country.

The next day, I went with Amy to visit her dad Rick at his office next to Grand Central. We would go by and pick things up from time to time, though less so since we had moved up to Sugar Hill. Amy had been at the ER with me the night before. She sat with me for several hours, until it became apparent that my case was very low on the totem pole. I had told her to go home, because it was getting late and she had work in the morning. I told Rick about this latest futile development in my months long saga and he shook his head. Amy and her family were always very supportive of me. And I always felt like Rick was a guy I could count on to tell it to me straight. He looked at me, and looked at Amy, and he looked down. Very respectfully, very fatherly, sad for me about what I’d had to go through, he said, “Man, this is really bumming me out.”

We left Rick’s office, I called my mom, and told her I needed her to fly me home.

As my mom and I continued home down the highway through rush hour traffic, discussing the problems with the tiny MRI machine at Children’s, my mom’s antiquated cellular telephone rang. I assumed it was my dad, calling to see if we wanted him to pick up something for dinner. I answered, and an unfamiliar voice, with a cowboy twang greeted me.

“Hello?” the voice asked, “Is this Laure Levin’s phone? Is this Reid?”

“Uh, yeah, yes it is,” I said, shrugging at my mom.

“Reid, this is Dr. Travis Heare, from orthopedics. Dr. Glancy–”

“Oh, hello, Doctor!” I responded, enthusiastically, “You heard about the MRI today? I guess my folks talked to you and they said we could coordinate something tomorrow. I’m looking forward to meeting you–”

“Reid,” he interrupted, stern but not unkind. He spoke slowly, slower than his drawl should have caused, “Reid, I’m sorry we haven’t met, and I don’t usually make these sort of phone calls, but we’ve been trying to track you down, and we found this number.”

“Okay.”

“Are you at home?”

“No.”

“Are you going home? On your way?”

“Uhm, well yeah, we were at the hospital for a long time trying to get me into the MRI.”

“I’m going to need you to turn around and come back to the hospital. Are you driving the car? You might want to pull off the road.”

“Yeah, yes–but I’m not driving,” the moment I said this, my mom grew very concerned.

“Okay, well, would you like me to wait a minute?”

I pulled the phone away from my mouth for seconds that I felt I couldn’t spare, I looked at the highway for a minute, I saw no good place to pull over, I looked at my mom, who was looking at the road and at me, I looked back at the road and I said to her, “Pull off at the next exit.” I think she asked why, and I think I just repeated that she needed to pull off.

“No,” I said into the phone, “what’s going on?”

“Reid, you have leukemia,” he said some other things, and I couldn’t hear him. I told my mom to pull the car over, and she was so worried. But I wouldn’t tell her until the car was stopped. I didn’t know how she would react. I didn’t know how I would react, saying those words, seeing what it did to her.

My gaze was locked straight in front of me. Leukemia? “You’ve got to stop the car.”

“I’m looking for a place, there’s nowhere to stop, please just tell me what’s going on!” She was frantic, concerned. She knew something was very wrong. We had pulled off the highway, but were stuck in a sweeping mass of cars going through green lights, forced to turn, nowhere to exit, nowhere to pull off.

Not leukemia, god not leukemia! “Mom, stop the car!” She was tearing up, and so was I.

Dr. Heare was still talking. I interrupted whatever he was saying, “Is there any chance it’s wrong?” No, one of the blood tests I had taken earlier today was irrefutable, the numbers were off the charts. And I was putting myself in serious danger if I did not return to the hospital immediately.

The car came to a halt in a parking lot. “Mom, I have leukemia.” What the hell is leukemia?

* * *

Yesterday, December 6, marked the fourth anniversary of the day I was diagnosed with pre-B cell acute lymphoblastic leukemia. Although several family members saw reason to celebrate this day during the past couple years, I never felt any good reason to give the day much special recognition. After all, it was the day I found out I had cancer, the day my life was irrevocably changed for the worse, diverted suddenly from the course I’d long been charting to one that wasn’t on any map I’d ever seen or heard of. It was a terrible day, as far as I was concerned.

It’s always seemed like there are so many happier and more meaningful days whose anniversaries we could choose to celebrate. For instance, the day my leukemia went into remission. Or the day I was released from the hospital following all those long months of rehabilitation after nearly dying from hemorrhagic pancreatitis. Or the day I finished cranial radiation. And I looked forward to being able to celebrate the day I finished chemotherapy for years, probably starting just about the moment I received my first chemotherapy infusion. And the truth of the matter is, there’s no reason I can’t celebrate all these things, not to mention many other accomplishments and benchmarks, big and small, achieved and yet-to-be-achieved along the very long and difficult journey of beating leukemia, finishing chemo, and recovering from all of it.

But after four years, I finally understand why December 6, 2007 is so special and what it means to me. It wasn’t the day the problem started, it was the day the problem started to be fixed. It was the day I was given an answer I may not have liked, but it was the answer to the question I had been seeking endlessly for months. And on that day, so many small events and decisions, both in and out of my control, from so many years of my being, came together in a grand confluence that saved my life.

We had finished speaking to Dr. Heare on the phone. We drove back to the hospital and I called my dad and Amy to tell them the troubling news. My mom and my dad and I reentered Children’s that night, dumbstruck. We were met by an oncologist named Dr. Meg Macy, who explained to us exactly what acute lymphoblastic leukemia was: a cancer of the white blood cells that compromises both the immune and circulatory systems. She explained why Children’s–this place I’d ended up because of a long story that began with me playing basketball when I was 12 years old–was the best place for me to be treated for this pediatric cancer. And she explained that my white blood cell count was extraordinarily high–there were hundreds of thousands of the compromised white cells per microliter–putting me at such extremely high risk that there had been a massive effort to make sure I didn’t get home before they got me back to the hospital. The oncologists did not believe even a night could be spared.

If I hadn’t flown in that day, and hadn’t gone straight to Children’s, and hadn’t got my blood tested, and hadn’t had a phone Dr. Heare was able to find the number to, and hadn’t gone straight back to the hospital, it’s quite possible none of those other days I considered to be more happy and meaningful would have ever existed to be celebrated.

That’s part of why December 6 is important. The other part is that, on that night, in the ER at Children’s, my parents and I were joined by close family and friends, who all lent their support. Those who couldn’t be there in person talked to us on the phone. This group only grew as the days and weeks and months passed. I owe the fact that I’m still alive to many, many wonderful people. Too many people to list, and certainly more than I’m even aware of. Their involvement, from well-wishes to visiting me in the hospital to praying for us to sitting with my parents and talking to sending cards to bringing food for the family to keeping me in their thoughts, and all the other infinite ways people supported my family and me, it all stemmed from that day.

They saw me, a small sapling in a hailstorm, and they quickly began planting themselves around me, connecting their root systems to mine, helping my roots to grow strong and robust and to be able to dig deep into the ground. And others heard through any number of means what had happened, and this group branched out and formed beautiful green leaves. From those branches grew many more branches and lots of small twigs, each with its own unique leaves, each feeding into a system that collected energy, strength, and will for me. A gigantic tree of life, planted on a day of sadness, that I will pay respect to and celebrate for the rest of my life.

–Reid.

* * *

This is a comic I happened to read yesterday. It’s from one of my favorite ongoing webcomics, xkcd. It seemed appropriate, if not eerie and entirely improbable that I should have discovered it yesterday. Click on the image for a larger version if you can’t make out all of the words. Or, even if you can read all the words, I still highly recommend clicking anyway and checking out more xkcd (it’s a webcomic of romance, sarcasm, math, and language–it’s got something for everyone).

xkcd: Lanes



My Back! My Nerves! My Brain! My… Slightly Better Everything?
Friday December 02nd 2011, 5:50 pm
Filed under: Leukemia, Me, Myself, and Reid

I’ve been seeing my surgeon (platonically) every few days since he performed surgery to remove the large radiation burn from my lower back in October. We considered a plutonic-239 relationship, but radiation’s exactly what got me into this mess in the first place. At each of these visits, the surgeon looks at the work he did on my back, admires it, and says that it’s coming along nicely. Sometimes he’ll poke the surgery site with a cotton swab, or if he’s feeling particularly feisty, he’ll jab it with some sharp metal implement, whereupon I’ll squeal.

“Great, we’re done for today,” he always says at that point, entirely non-sarcastically, “it’s coming along nicely.” A nurse bandages up my freshly battered wound, and the entirety of my visit, from start to finish, is done within about five minutes. It’s routine.

Yet, I can’t help but feel something is off about this whole process. Perhaps it has to do with my surgeon, Dr. Laidback (not his real name), who told me that, after my surgery, I would be “all healed up within two weeks.” I know I’m not the greatest math wizard to ever dabble in in mathamagics, but I could swear that two weeks after October 21 would put Dr. Laidback’s estimate somewhere around October 41, or November 4, if you adjust for inflation. When he made that estimate, I offered a counter-estimate of uncontrollable laughter. But he stuck to his two weeks. And then, he oddly stuck to his two weeks, even as weeks and weeks went by. More than two weeks.

Eventually, LB (not his real initials) was forced to confront the problem of the fourth dimension, which, as we all know, is ego. Were my back to have healed entirely from surgery by that November 4 estimate, it would have had to have gone back in time and had surgery several months earlier, if not even longer ago than that. Because, as has become clear, this is not a two week heal deal, this is an ambiguous, unpredictable no one knows when it will heal deal. But, while LB acknowledges that my back is not healed, and will not be for some time, he continues to tell me how good it looks, and that I can get into a hot tub with it anytime I want. This is not a question I have ever asked–he is just saying this because hot tubs are known to be one of the ultimate places to get open wounds infected, and he wants to make it clear that my back is fine. Which is highly debatable, if not entirely untrue.

I don’t want to give the impression that I’m angry or sad or mopey about this, because I’m not. I knew, from my experiences over the past four years, that my body was not going to cooperate fully in this endeavor. And it is cooperating, to an extent; the surgery site is healing, it’s just going very slowly. The radiation burn on my back was removed from my lower back, one of the biggest tension spots on my body–so almost every movement I make causes that spot to contort in some way. Even before the sutures were taken out, the incisions split open. And then they got wider, and wider. And that was really scary, but they did eventually come back together and close up. So there is healing, but it’s slow.

And there’s a really amazingly great unimaginable good thing about this. Before this surgery, my lower back was dominated by a deep concave indentation, lined with scar tissue on the immediate surface and radiated and necrotic tissue immediately underneath it. I was told by everyone, every single doctor and surgeon and specialist who cared to weigh in since February 2008 (and there were a lot of them) that my back would never have a normal flat human back shape again. More than that, the theorized 14 hour surgery to attempt to fix my back was deemed to be so dangerous to my life that it would not be worth trying. I had given up on ever having a normal looking back again. And then, after nearly four years, LB restored the normal flat shape of my lower back without ever coming close to risking my life, and he pulled off a procedure that took far, far fewer than 14 hours. So I must give credit where credit is due.

That said, I have a hole in my back. Which I didn’t even realize until I took a picture of it a few days ago. One of the major disadvantages to having a wound on your lower back is that you can’t see it (even in a mirror, it’s like a vampire or something). And if you’re a good or, honestly, a squeamish patient like me, you probably won’t go sticking your fingers in it to explore what you can’t see. I think this information was very unintentionally not shared with me because so many people have looked at it and worked on it, from LB to nurses to other doctors to my parents, that everyone likely felt comfortable that someone else surely must’ve explained every detail to me. Oops. I don’t really blame anyone for this, but it surely furthers my anti-hot tub thinking.

I’m frustrated is what I am. I’m grateful for what my back will eventually be, but I’m frustrated with the healing process. Not because it’s slow, but because I have no concept of how slow it is (I actually had to ask LB to start measuring the hole, recently, y’know, for progress… yeesh) and because LB is really, really bad at estimating. Surgeons have to be unbelievably confident, like jet pilots are or Evel Knievel was, because they can’t have any doubts while they’re doing their job. While I absolutely recognize that it’s a job requirement, I’ve also had experience with surgeons where it can get out of hand. While there are plenty of nice, lovely surgeons, there are unfortunately surgeons whose confidence has turned them into asshole jockey surgeons, or god-complex surgeons, or, as in this case, laid back “everything’s cool” surgeons.

So I may be frustrated with my back for a while longer (not a real increment of time).

In the meantime, I’ve developed a new problem and I’ve come to better understand another one.

The new problem started a few weeks ago. From time to time, I have been having a pins-and-needles sensation in the palms of my hands that comes along with a sort of numbness. In many ways, this is similar to the peripheral neuropathies in my hands and feet that I developed during my first months of chemotherapy in late 2007. At that time, the nerves in my hands and feet were toxically damaged by specific chemo drugs to the point where they were excruciatingly painful at all times. I’m not sure why, but the neuropathies in both my hands faded away soon after I left the hospital in May ’08, while my feet took years to fully recover. At any rate, it’s quite odd that I’m experiencing anything like this again now, after chemo.

The fact is, the chemo drugs that caused damage to my peripheral nervous system should be long gone from my system. Also, when I had neuropathies during chemo, they were constant, but what I’m experiencing now in my hands comes and goes. The intensity varies, the length of time it lasts varies, and for some inexplicable reason, my fingers touching certain things, like fuzzy towels, or my beard, or sometimes even running water, seems to sometimes set off the sensation. I’ve had a series of tests run to determine what could be causing this, and other than ruling out diabetes (haha, take that, insulin!) and some other blood-based diseases, we’re pretty clueless at this point. I’m going to have a test called an EMG, which will determine if my nerves are being interfered with by one of the many medications I’m still on, or if there’s something wrong with my body, itself. This is done by sticking several needles into the underside of my wrist and sending electric currents through them. While I think it’s cool that there’s a test that can reveal the source of my problem, this test sounds absolutely terrifying. At least it will provide some sort of answers.

During chemo, I developed a large, ongoing fear of brain and nerve damage. I think it is rational and well justified. I had neurotoxins regularly put into my body for three and half years, my brain was dosed with cranial radiation, one of my chemo drugs that was delivered through my cerebrospinal fluid literally burned my brain, I had a three day psychotic break during which I could not be convinced that I was awake, I went through ten days of delirium that I can’t remember because I couldn’t form or access memories, I suffered nerve damage all over my body including terrible neuropathies in my hands and feet, and I was hit hard with chemotherapy-induced cognitive dysfunction (“chemobrain”), from which I am still reeling. On top of all of that, leukemia hides out in the brain and spinal cord even after it’s vanquished from the rest of the body. I’m trying my best not to get too freaked out about this, because I have no information that suggests that this is something to be freaked out about. I want to do these tests and see what they say, but the longer this goes on without any information why, the harder it becomes not let my mind wander into worrisome territory. I think I’m doing pretty well at keeping calm at the moment, considering.

Oh, excuse me. What a coincidence. I just now found out that my EMG will be in mid-February. That’s disheartening. I’ll talk to my new PCP and see if she can maybe get that moved up a bit.

Which is actually a smooth transition to my last topic cluster for this entry. I’ve been switching over to all adult doctors, which someone should have prepared me to do before I was done with chemo (even if it was simply by saying so). There is no question in my mind that Children’s Hospital was the right place for me to be treated for my leukemia, even though I was in my mid to late 20’s while under their care. I truly believe that if I had been in the care of an adult hospital, I would not be alive today. But, when treatment for my pediatric disease came to a close, it was time for me to move on from Children’s, with a few exceptions. But I didn’t know that, I didn’t figure that out until months and months too late. I figured the people that had treated me for three-and-a-half-years of chemo would be the people to see me through recovery. But I was wrong.

This isn’t a condemnation of Children’s in any way, although, I would like to let them know that in the future they need to help their adult patients transition better. There was harm done that I think could be avoided in the future. One of the biggest examples I can give is that young kids who complete chemotherapy might experience some lingering effects, but they’re usually up and bouncing off the walls pretty fast. When I was complained of extreme exhaustion for months and months after I completed chemo, explaining that I had gone from three-day-long spans of insomnia during chemo to being unable to so much as write in my blog because I was sleeping all the time, my docs scratched their heads. This just isn’t something kids experience on the level that adults do–so the pediatric doctors wouldn’t (and shouldn’t be expected to) have any experience with its rather simple diagnosis.

I was told by several of my doctors that the reason I was so exhausted, so unable to do anything besides sleep and drag myself to doctors appointments (like HBO… where’d I’d go sleep), was because I was depressed. And I was depressed; I was very, very depressed. Because I had no idea that recovery was going to be so prolonged, I had no idea the work it would take to be considered “done,” and I had no idea why I couldn’t get started on that work because I couldn’t get out of bed. When I was told that my depression was the cause of my exhaustion, I became much more depressed. I felt guilty, because it was clearly my fault that I was so tired and weak and unable to recover, and if only I’d be less depressed things would get better. And these thoughts made me more and more and more depressed.

Because they were completely wrong.

It took me until October to first see my new PCP. She is an internist that specializes in helping adults who have been through chemo. The difference in speaking to her and speaking to any of my doctors at Children’s isn’t the level of concern or intelligence, but experience with people like me. At that first appointment, she managed to do something to my deep depression with a few words that months of therapy and pills couldn’t touch at all.

“You’re right in the middle of the bell curve, Reid, you’re right where I’d expect you to be,” she told me. “Patients who are six months out from recovering from three months of chemotherapy experience the same symptoms you’re experiencing, and you were on chemotherapy for three-and-a-half years. Between your medications, your body healing itself, and fatigue that has been scientifically proven but is not entirely understood, it makes sense for you to be so exhausted.”

I won’t lie and say that all of my depression and anxiety was lifted at that moment. But a great deal of it was. I never, ever, in a million, bajillion years would have thought that someone telling me I was normal would have such an impact on me. It was as if a huge fog was removed, and a huge weight lifted. I didn’t have to feel guilty for being exhausted, I didn’t have to justify why, even though I wasn’t sick, I just didn’t feel up to doing anything. And as days went on, and I was able to truly process that and breathe so many sighs of relief, I started to feel the tiniest bit of strength and energy returning to my body. It was only a very, very small amount, not enough to come close to overpower my exhaustion, but enough to give me hope. Enough to show me that I am capable of regaining my strength and energy. I didn’t know until then, but I had been stripped of all hope.

I have that shred of hope, and that’s what I needed. This situation will never, ever be one that I would have picked if given the choice, but I know now that I can overcome it. I know I can get better. And I will, even if it takes building myself up by the tiniest of amounts, bit by bit.

–Reid.



Surgery Went Fantastic, I’m Recovering Well, HBO Ended Nicely
Wednesday November 02nd 2011, 9:59 pm
Filed under: Family, Friends, Leukemia, Me, Myself, and Reid

Thank you to everyone for the thoughts and prayers and checkings-in about my surgery two Fridays ago, and how my recovery from that surgery has been going. These things always mean a lot to me, even if it takes me a couple of weeks or months or some further highly inappropriate span of time to say so.

My surgery went very well, which in itself was a huge victory for me. Furthermore!, once the surgery was underway, the surgeon decided that it was unnecessary to remove–by manner of chipping, yanking, wielding, or otherwise–any part of any of my vertebrae. I found this to be quite a turn of good luck, seeing as how much I love using my spinal cord on a daily basis. Not that my spinal cord was ever in that much peril, but not having to touch its shell sure made me more comfortable. Or it would’ve, if I’d known about it beforehand. Oh well. Still good news!

Everyone involved with the surgery was fantastic. Of course, there was the surgeon, who I am forced to assume did very well for two specific reasons. First, he must be very good because everyone in the know says my back looks very good. Second, I must take those folks’ word since the surgeon never showed me how it looked when it was finished, like my barber would’ve done with his little mirror, so I could see the the back of my new back. Then, of course, there was the anesthesiologist, the surgery team (whose individual job titles I never really caught), the pre-op nurse, the post-op nurse, my family who waited outside (some farther away than others), and finally me, who waited inside the whole time. Every single one, fantastic.

The inpatient situation was laughably bad now that I’m nearly two weeks out from it. Before now, it was laughable and stupid, before that, it was stupid and dangerous, and before thaaaat, it was dangerous and frightening, while at the time, I didn’t quite fear for my life, I may have spent several hours, curled up in my bed, wondering what small straw it would take to break that camel’s back. Ha ha ha! Hilarious.

Those nurses of the nursing staff with which I personally interacted during my short stay at Presbyterian/St. Luke’s Hospital were not up to the same standards of not invading my tiny, irregular pentagonally shaped room at 3:37 AM, of not moving the only chair out of said irregular pentagonally shaped room, of not requiring an hour’s worth of trigonometry to move said chair, and of not not trying to choke me with my canula several times and tipping over my IV tree, from which dangled tubes and whatnot that went into the veins in my hand, which I think might work their way back up to my heart, which probably could’ve just been yanked out right there but it fell on the chair, all while performing said trigonometry that I’ve experienced at other hospitals.

Moving away from that tiny bit of unpleasantness (well, a lots of unpleasantness in a small amount of time), the morning after my surgery, I was wheeled down from the aforementioned irregular pentagonally shaped room to hyperbaric oxygen therapy (HBO). It turned out that Saturday morning HBO was only attended by me and veteran HBOer Tucker. Tucker was not all that fond of me invading his usual solo HBO excursions in a chamber built for 12 people. Tucker was six (making this particular session’s average age far below the standard 83 years old, at a mere 11), and by the time he and one of the HBO technicians played two hours worth of tic-tac-toe under 45 feet of pressure, Tucker didn’t seem to mind me much anymore.

The next day, I switched back to my normal afternoons in the chamber, where no one would play tic-tac-toe with me, and I was the one dragging down the average age. I was the only one whose hair hadn’t all gone gray or fallen out. I stopped bringing anything to read for those two hours in the chamber, because somebody liked me and kept giving me a bunk to sleep on. But, honestly, I loved all those folks. I really enjoyed this past month getting to know them. We’d talk before and after treatment, and inside the chamber, on breaks from wearing our various oxygen headgear. Everyone was so damn nice. Every single one of us were cancer survivors, and until the last few days when a new patient joined us, all of us had been wounded by radiation. It didn’t matter how old any of us were. There was as an amazing strength of spirit amongst us. I wish all of the friends I met in the hyperbaric chambers very good luck, and the best of health.

I finished hyperbaric oxygen therapy on Monday, on condition that if my back looks even the slightest bit wonky while healing, I’ll go back. At a checkup with my surgeon on Tuesday, no wonkiness was detected–he said said it was looking great and healing as expected. Someone simply looking at a wound and saying “this looks like expected” for me is another victory.

I really only have the highest praise for everyone in the HBO center at Presbyterian/St. Luke’s Hospital. From the doctors, to the nurses, to the hyperbaric chamber technicians, to the office staff, everyone made me feel like part of a community of mutual respect and support. They’re great. So if you find yourself in the Rocky Mountain Region any time soon with any sort of major radiation wound, or carbon monoxide poisoning, or just a case of the bends, I recommend these folks whole heartedly!

–Reid.
Hyperbolic Therapy Technician

P.S. I’ve discovered that if too much air gets into my tummy while under pressure, that air then expands, and I have massive, largely uncontrollable burps for the next 18 hours.



Addiction and Withdrawal (and some other things that’d take away from that dramatic title) (whoops)
Tuesday August 30th 2011, 9:18 pm
Filed under: Friends, Health (Not Cancer), Me, Myself, and Reid, NYC, Sodapopcornculture

FROM THE WRITER, WRITTEN AFTER EVERYTHING ELSE, JUST BECAUSE: I’m sick right now. I have been for what feels like a very long time. Most of August, at least. This is a long entry, because there’s a lot to cover. There’s a lot to say about what’s going on right now. I’m going to try to write shorter entries as soon as possible, in the hopes that I get my groove back. Right now, though, I’m moving even slower than normal due to the aforementioned being sickness. Now, onto things I wrote before now.

* * *

I’m giving up the day rating system because, frankly, I don’t like rating things with numbers. For me, when rating things, the values of numbers feel arbitrary while the values of words feel exact. And to all those equation-huggers out there vilifying me as an anti-numeralist and saying I have some sort of anti-numbers agenda, let me be perfectly clear: this has nothing to do with my anti-math campaign. Just like our traditional Roman alphabet, numbers should be used to rate things on blogs–just not my blog. Look, I love using numbers for all kinds of stuff, like… ranking things! Yeah!

Now let’s see where we left off…

Ah yes, rebound headaches and New York City.

I made it to NYC for the first time in nearly a year!, albeit while having continuous rebound headaches. I spent most of my time in a hotel room, with the lights off and the air conditioner turned way up (up, of course, being the direction one turns an air conditioner so that it will make the temperature go down), just trying hard to sleep. Which was all well and good but, believe it or not, wasn’t the highlight of my trip.

I was able to attend Wes’s bachelor party and join some good friends in celebration. Wes and I grew up together in Colorado, and he moved out to NYC after college. At some point early on in Wes’s life in NYC, Paul Syracuse and I inadvertently matched him up with Paul’s friend Emily, another transplant to NYC. Wes and Emily will be getting married soon in Emily’s homestate of Iowa. Due to the intermixing of these various social networks, I got to celebrate with some friends I grew up with in Colorado and some friends I’d made in NYC. It was really great having guys from these different groups of friends, many of whom are normally so scattered to the four corners of the world, in the same place at the same time. It was nice catching up with people I don’t get to see all that often, and it was fun hanging out with everyone. I was glad I toughed it out for the party. Not the whole party, but for a good chunk of it. Not a big chunk, but definitely a good chunk. Yep, a chunk of the party that lasted exactly as long as I was able to tough it out with migraine-strength headaches. I made it through dinner. But still! It was great.

I did only a few other things whilst in NYC, when my head would allow. Matt Gallo and I saw Will, BTTM’s stage director, performing his sketch comedy play phenomenon, Dystopia Gardens, which was just reviewed by the New York Times. I saw Spider-man with Jason, Reiman, and a surprisingly at capacity-looking audience. And I got some ice cream. By the time I was leaving, my rebound headaches were much less frequent. This in no way stopped them from getting in the way of things I wanted to be doing, but it was certainly a nice feeling knowing they were on their way out.

How would I rate the trip? On the one hand, 1) there were tons of people I didn’t get to see that I would’ve liked to have seen; 2) my hotel was hosting a creepy child beauty pageant (is there any other kind besides creepy?), for which “parents” bred intricate ballroom gowns with little girls inside them, who had been trained to sit, fetch, and bark “America The Beautiful;” and, 3) I was plagued by rebound headaches. On the other hand, Spider-man didn’t fall on me. I therefore consider the trip a success.

After I returned home and took a few days to recover from traveling, I finally began the wean off the one medication, more than any other, that I’d been waiting years to stop taking: methadone. Methadone is popularly known as an anti-addictive drug to help people get off extremely addictive and deadly opiates like heroin. It’s also a very powerful pain-reliever. When I was in the hospital for all those many, many months in 2008, I was put on a tremendous number of pain medications to help with my tremendous amount of pain. Among them, (you guessed it… probably) methadone, which I’ve never completely stopped taking.

That isn’t to say I haven’t tried before. From late July ’08 through January ’09, we successfully weaned me down from 80mg of methadone a day to 10mg a day with no trouble. We proceded to the next step of the wean but had to stop when, for the first time in my life, I experienced withdrawal. My docs talked about various other plans to get me completely off the stuff, but it was decided that chemo was hard enough on me as it was and that I was still experiencing chronic pain, so I couldn’t go off it until I was done with chemo. Over the intervening days and weeks and months, as I learned more about methadone and all of its bad side effects, the more I wanted off of it. Eventually, chemo ended and eventually the doctors in charge of my pain medications came up with a new plan to get me off methadone–this time, without withdrawal. My first day on this new plan, when I took the smallest dose of methadone I’ve taken since January ’09, I was almost as happy as the day I finished chemo.

A few days passed, and the wean was going great. I was having fewer and fewer rebound headaches, but as I said, they were still causing trouble. Like many of my health issues of the past four years, the rebound headaches didn’t have the best timing. They’d pounce on me when there was something I wanted to do, and they were nowhere to be found when there was something I didn’t want to do. At last, they seemed to depart for good, just in time for another pre-wedding celebration: an engagement party for my buddy Loren and his fiance, Laura. They’re great. They’re perfect for each other, and I’m very happy for them. Very happy. That being said, I didn’t know people still had engagement parties, a curiosity which I made a point of asking the happy couple about. They explained that since they are getting married in a year or something, that they were holding… or doing… a sort of a… uhm… I don’t know. I think the whole thing was a brilliant racket to get double the gifts of a normal wedding. Brilliant. Good for you guys! It was a great party, too!

Several days passed. And it started.

Methadone withdrawal. Again. But different this time. Worse. Awful headaches, stomachaches, body pain, sweats, hallucinations, and all sorts of other symptoms. And due to my experience with rebound headaches, I can now only take short acting pain medications eight days a month. There was a about a week before it was clear that I was suffering from withdrawal. And it’s been another week since then. I have no feeling for when it will stop. It’s hard to decide if this day is one of the days I should take a pain reliever, or if I should hold off in case there are worse days ahead when I’ll need it even more. I really don’t want to be in any worse condition than this without some kind of relief.

And, yes, eight days a month. Because I had rebound headaches, that’s my limit on any short acting pain medication, which includes everything from Advil and Tylenol to Percoset and Oxycodone. If I don’t adhere to this for what could be years, I risk triggering the headaches again. And to think, If either of the doctors that put me on 2,400mg of ibuprofen had first asked me if I get many headaches, that would have sent up a red flag. It’s very likely that I wouldn’t have had the rebound headaches and that I wouldn’t have had these restrictions put in place. Rebound headaches are also called medication overuse headaches, and it’s easy to see why when you swallow 2.4 grams of Advil a day continuously for almost two months.

When I’m finally able to tolerate this dose of methadone without signs of withdrawal, I’ll take a breather, and then weaning will continue. I’ll step down to an even lower dose. Withdrawal hurts. It hurts my body and it hurts my mind. Today, I’ve had trouble putting sentences together. Thoughts in my head are all over, but hard to find when I go looking for them. I am, however, finding it particularly easy to hold a conversation with my fan. I’m scared, because I know what going down a dose has done to me this time, and I fear what it will be like next time.

My rebound headaches and my methadone withdrawal share some similarities. The origins of both the headaches and the withdrawal can be traced back to well-intentioned doctors putting me on pain medications for long periods of time (ibuprofen and methadone, respectively). In both cases, I took the medications exactly as directed–to. the. letter. And from each, I wound up with a disease no one can simply go out and catch. Addiction. Addiction, addiction, addiction. I had a healthy respect for addiction’s power before, and a good level of disdain towards it. Now, after spending the better part of a month learning about withdrawal first hand, and knowing I’ll probably be spending at least one more doing the same, my feelings about addiction have all turned to fear.

But don’t let there be any mistake, methadone: I want to kick you for good, more than I want to stop right now and feel better. And believe me, I want to take that little extra dose that I know would make me feel better. I really want to take it. But I won’t. I never asked for you, but you forced me into addiction anyway, and you’ve caused me so much anguish. You may be a big, ferocious beast, methadone, but I’ve fought much bigger and much badder beasts than you. And I’ve slain each and every one of them. No matter what it takes, no matter how long it takes, I’m going to win this. And you will lose.

–Reid.