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.



In My Hospital Room & Nothing About DR. POISON Is Comforting!
Thursday November 14th 2013, 1:58 pm
Filed under: Health (Not Cancer), Who Knows?

I was just shown to my room. This was on the first table I saw:

20131114-133658.jpg

I don’t know that doctor! In fact, I’ve never met anyone named Dr. Poison before! This is feeling more and more like an undercovery spy op by the second! I believe that, according to those papers, this doctor, Dr. Poison, is the epileptologist who will be watching my every move (including those made inside my BRAIN!) during my stay in the hospital.

Granted, “poisson” means “fish” in French, but: A) the person who wrote the doctor’s name down could just be very bad at spelling, OR B) thhe persson whho wroote thhe docctor’s namme dowwn coulld bbe usinng somme sorrt off verry clevver codde tto hidde Dr. Poison’s trrue identitty, OR C) the epileptologist that will be overseeing the overseeing of me could be a French fish.

It’s definitely one of those three things.

I haven’t actually spoken to anyone other than the SEEMINGLY very nice person that showed me to my room.

More information as it becomes available and/or I make it up.

–Reid.



I Am Going To Be In The Hospital For A Few Days Starting Thursday.
Wednesday November 13th 2013, 10:13 pm
Filed under: Health (Not Cancer), Leukemia

I received a call today from my neurologist, who elatedly told me that he could get my extended EEG test bumped up from December 17 to tomorrow (November 14)! This is great news, because I won’t have to wait another month to get some answers about this specific side adventure. I don’t know when exactly I’m due to report in tomorrow, but I’ll get a call about it, presumably before I’m supposed to be there (this feels like a super secret undercover spy mission!)(well, except for the part about going to stay in the hospital). I’ll also find out about visitation rules and such when I am able to do so.

Your pal,

–Reid!



I’ve Arrived Down The Road. Thank You For Being There For Me.
Tuesday November 05th 2013, 9:57 am
Filed under: Family, Friends, Health (Not Cancer), Leukemia

This year has been a struggle. I lost a beloved cousin and her mother, my aunt. I lost a close confidant to suicide.

I spent so much of the year waiting for the thing that would help me. Waiting for the day and the person that would make me better, that would finally fix me. Appointments scheduled distant months away, only to prove fruitless when I’d arrive. Small steps forward threatened by new, complicated issues wanting to push me all the way back down the mountain.

Since the summer, I have struggled with violent and painful hallucinations that I can only feel, but cannot see. Whenever and wherever I try to sleep, I experience sensations of my limbs sawed off, my torso stabbed with knives, and my skin pierced with hundreds of burning needles. I am held by dozens of hands and I am molested by my own brain.

I have also developed vertigo and the tremors I earned from chemo have worsened considerably. Many of my doctors believe these things are all due to tiny seizures in my brain; so tiny that they don’t cause physical convulsions. Instead, they shake up my central nervous system just enough to cause me to feel that I cannot trust any of my senses.

When I had leukemia, there was evidence that some leukemic cells might hiding in my cerebrospinal fluid, the liquid that surrounds my brain and spine. I received radiation treatment to my brain and chemotherapy drugs injected into my skull in such a way that it splashed directly onto my brain and then stayed contained, killing things in the waters my brain and spine soak in. This particular chemotherapy drug was so toxic that one hemisphere of my brain bears a chemical burn that can be seen in MRIs and other advanced imaging.

Believe it or not, I’m not complaining. All of those things were part of a grand plan to save my life. Here I am: I am alive. All of those toxins and all of that radiation worked. They obliterated my cancer.

Unfortunately, though, as a result of the radiation and the toxic chemotherapy, my brain and spine are not as healthy as they once were. I was warned of possible side effects before I began receiving radiation. Hallucinations, vertigo, and tremors were all things I might experience “down the road.”

It seems I’ve arrived down the road.

I’ve had many tests run over the past months, but to diagnose the exact mechanism in my brain that’s causing these problems, I need to go into the hospital as an inpatient so that epileptologists (seizure experts) can study my brainwaves over the course of five days. There will be wires superglued to my head the entire time I’m there (checkout the bottom of my last entry for a picture of the wires I’ll be stylin’), and while I’ll be able to move about my room, I won’t be able to leave it. I’m hoping that the epileptologists will be able to gather all the information they need from this hospital stay.

It’s been a few years since I’ve been an inpatient at a hospital. Being an inpatient is very boring, which again, is not a complaint, just the fact of the matter. If you’re ever going to stay in a hospital for even a day, make sure to bring something to entertain yourself for more hours than you expect to be there. When I told my friend Jason that I was going in for this hospital visit, he told me to make sure to load up my iPad with lots of comics to read. When I responded that I don’t own an iPad, he was aghast to learn that I’d been reading comic books on my iPhone.

“How is that possible?” he asked.

To which I responded, “Lots of squinting.”

Joking aside, Jason decided to do something very kind for me.

Jason coordinated with a large group made up mostly of our tight knit group of high school (and many pre-high school) friends (plus some other very sweet people) to buy me the latest iPad to pass my time during my hospital stay. Over the past six years, I have emphasized over and over that my friends are my drug of choice–they are the best medicine to make me feel well. My friends are amazing even when they’re not bestowing material gifts upon me. The iPad is wonderful, and I thank them all for this fine gizmo. Even more importantly, though, what I take from this is my friends’ willingness to support me in getting well, even after so many years, climbing so high up the mountain, and walking so far down this road.

Thank you all so much. I love you all.

–Reid.



Neurology Problems Tied Up In A Nice, Neat Little Package; Awaiting Pretty Bow.
Friday October 11th 2013, 6:45 am
Filed under: Health (Not Cancer), Leukemia

I saw a neurologist at the end of last week who explained my summer of symptoms (and then some), why they’d occur together, and most likely why I’m having them. What he explained really tied up several different things I’ve been dealing with and hearing from doctors into one nice, neat little package. A nice, neat little package that, at this point, requires just one little thing before a beautiful bow is placed atop it: a scientific test.

In addition to the hallucinations I’ve been experiencing over the summer, I’ve also been experiencing vertigo (thanks for the keen observation, loyal reiders!), and the tremors that I’ve had for many years have become much, much more pronounced. These three things together have caused fairly constant exhaustion. Together, they can make it extremely difficult for me to carry out gross motor functions without fear of falling over, things such as walking around big areas and going up and down stairs. They’ve also caused me trouble with fine motor skills, like holding a glass of water without dropping it and typing without it coming out as gobbledygook.

Just to be clear, I don’t want to give the impression that I’m totally unable to get around or unable to take care of myself, because that’s not the case. It’s just that these things are causing me great fatigue because I have to focus a lot to make sure I’m not falling or dropping something or typing ds/fisd09;. When walking much, it’d been important that I have someone around to make sure I’m not falling. My feet and knees sometimes shake and do not move forward in the manner I’m used to. And there’s that thing where it feels like the room’s gravity is constantly shifting between different walls. That one’s vertigo, which I had always incorrectly associated with fear of heights due to the classic Hitchcock film The Birds. And there are the hallucinations, which won’t leave me alone despite how many times I hit “unsubscribe,” so I’m not going to give them the attention they want by writing any more about them.

It’s likely that these three conditions are a result of the two specific parts of the treatment of my leukemia: first, the cranial radiation, in which beams of radiation were shot into my head. Side note: I find it interesting just how many ordinary people in comic books from the 1960s were turned into superheroes after being hit with beams of radiation. I mean, this was during the Cold War, when ducking and covering under school desks was practiced regularly for fear of radioactive Soviet bombs being lobbed at the United States.

Anyway, the other component to my body’s current nervous reaction is most likely the chemotherapy I was given for a long period of time through my brain into my cerebrospinal fluid (which surrounds the brain and spinal cord).

It turns out that a combination like this chemotherapy cocktail can cause nervous system damage that takes years after treatment to result in a group of certain neurological problems that reveal themselves around the same time. Neurological problems like the ones I’ve been experiencing! For some survivors, these problems might not emerge for 35 years, while for others (me), it may only take three years. Of course, a lot survivors will never experience these problems at all. Lucky ducks.

The reason these symptoms usually present around the same time is that that they’re all caused by teeny-tiny cute little seizures in the brain. These seizures are generally too small to see, as opposed to the kind of seizures that shake people’s entire bodies. Despite their smallness, these seizures can still cause all the previously listed and complained about nervous system problems.

I am currently on my way to get an EEG (Electrosomethingorother) test (you have to click that link–seriously, you have to see how many doohickeys will be attached to my head)(it’s A LOT of doohickeys), which was scheduled early in the morning so as to catch me feeling disoriented and not in an altogether rested state. Fools! They could have selected any time of day and caught me disoriented and in a not fully rested state!

Anyway, the EEG detects tiny seizures. Although, if it doesn’t detect any seizures, that doesn’t mean I’m not having any seizures–it could simply mean that I did not have a seizure during the test. If that is the case, I’d most likely have to go into the hospital for a couple of days of a long EEG, where they wait longer for seizure activity. At any rate, confirmation of seizure activity will be the pretty bow on this package. It’s weird to hope for seizures, but I guess what I’m really wishing for is an answer and something that’s treatable. Which, in this case, happens to be small seizures.

Okay, that’s it! They’re calling me back for my EEG!

–Reid.

Several hours later: Uh… whoops. I did not hit the “publish” button after I finished writing this post. I was feeling sort of disoriented and not in an altogether rested state. The EEG went just fine. I thought it was very interesting and I’m looking forward to hearing the results!

For a picture of me with all those doohickeys all over my head, check out this selfie!

EEG Doohickeys

That’s it for now!
(for real this time)

–Reid!



A Very Honest Post About My Health In Which The Main Subject Eludes Me.
Thursday October 03rd 2013, 5:27 pm
Filed under: Health (Not Cancer), Who Knows?, Word Nerd

Earlier today, I felt super compelled to write a quick blog entry that included a brief update about my health and also about how I wasn’t just spending my time sitting around playing Nintendo, which led to the very brief blog post “I’m Not Sitting Around Playing Nintendo.”

In addition to the two health things I mentioned in that post, my hallucinations still going on and the ear and/or nose and/or throat disease I was given metaphors and antibiotics for, there was one other obnoxious health thing I wanted to touch upon. However, I couldn’t remember the words I’d been using for the entire past week to describe it and since I was aiming to write something quickly, I decided to just cut it.

Of course, as soon as I put that blog out, I remembered the word. And, as was only logical, I then proceeded to take a nap.

When I woke up, I immediately tried to recall the word, only to discover I’d forgotten it again. Even though I was moving around, suffering from this thing, the damn word I’d used over and over and over all week to describe it was gone. Again.

So I decided to have some lunch, clear my mind, return to my computer, and, with the greatest of ease, punch out this simple word that it turns out I STILL CAN’T REMEMBER.

The first word that comes to mind is “oxfinder,” which has several problems with it right from the start. First, I don’t think it’s even a real word, though I’ll admit that has rarely stopped me in the past. The second problem is that I’ve been using my lost word to describe an upet sense of balance, and I just don’t get that feeling from oxfinder.

Wait! I got it! Spirograph! I’ve felt like I was at the center of a spirograph all week, all wobbly and things rotating… this isn’t the right word, either. But it is much closer than oxfinder.

Man, I am getting genuinely irritated about this. I hate it when words fall out of my head. There are several reasons why that’s prone to happen to me, including my post-chemotherapy cognitive impairment (chemobrain), the few stupid medications I was put on during chemo that I’m still taking, these damn hallucinations preventing me from getting good sleep, and also, I should probably not overlook the fact that I am a human being and we all forget things sometimes. Though, I will contend that words do not fall out of your head as often as they fall out of mine.

GYROSCOPE!!!

Yes, excellent! Gyroscope is, in fact, the word I’ve been using all week without any impediment, whatsoever. Where did you run off too, you little word?

Like I was incorrectly explaining about a spirograph, I have felt that I’ve been in the middle of a gyroscope all week, all wobbly, with the whole world rotating around me. I’ve needed a lot of assistance to get around the house, because I keep feeling like my momentum is changing direction without my permission and that the gravity of the earth is teaming up with it just because they think it’s funny to make me feel like I should be walking on a wall. I don’t think that’s quite how gyroscopes work, but it seems preeeeetty close.

Anyway, gyroscope, gyroscope, gyroscope. That’s the word.

For more fun learning about subjects mentioned in today’s blog, here are some Wikipedia articles about spirographs and gyroscopes, both of which require so much more math to fuel them than I ever, ever could have imagined. Also, it turns out an OXFinder is a thing. I haven’t even the smallest desire to know how much math it runs on.

I’m the rotor in the gyroscope!

–Reid!



I’m Not Sitting Around Playing Nintendo.
Thursday October 03rd 2013, 9:30 am
Filed under: Health (Not Cancer), Who Knows?

I’m still suffering from hallucinations, plus I’m getting over some terrible thing that is either strep and/or laryngitis and/or pharyngitis and/or a sinus infection. Something that made it far too painful to swallow my own saliva. I went to a sketchy urgent care place where I was luckily put on antibiotics. The doctor’s exam was made up mostly of nonsense metaphors, like how diagnosing strep while not having tonsils was like being asked what kind of engine my bike has when I don’t actually have a motorcycle. Really, really, really confusing.



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.



“Where The Hell Are You, Reid Levin?”
Thursday August 22nd 2013, 11:49 pm
Filed under: Friends, Health (Not Cancer)

Oh, hello! How very interesting that you should ask where the hell I am. I was about to answer that very question. As it turns out, where the hell I am and where the hell I should be are not even remotely close to being the same place.

I should be in San Francisco right now with my friends David, Claire, and Matt.

Instead, I’m in my room at home, which is a perfectly comfortable and familiar place in which I often try to sleep, but it’s no San Francisco. What it is is a room in the basement, which has led to it being referred to variously as “the cave,” “the dungeon,” and “the Bedroom of Solitude.” In turn, I have been identified as “the troll,” “the dungeon master,” and “not Superman.” I have it on good authority that, contrary to popular stereotypes, trolls’ prefered domiciles are, indeed, caves. Okay, that might not be true, but it’s okay; several of my best friends are trolls.

All right, enough about my cave.

David and Claire recently migrated to the hills of San Francisco from the cheesesteaks of Philadelphia. Claire is a skilled doctor who was selected to work at hospitals in San Francisco, coincidentally, as a doctor. Some time ago, our friend Melissa announced that she would be getting married in Yosemite National Park this weekend, so I devised a plan to crash David and Claire’s home in San Francisco and drive with them to Yosemite. Since I dreamt this whole scheme up before David and Claire were even certain about where Claire would be working, I’d like to take some credit–not all of it, just most of it–for their happy new life in California, where they would have moved regardless of my plan.

(Phew, I’m sure glad they’ve enjoyed California, so that I didn’t have to use that alternate sentence I prepared but am glad no one will ever read*.)

I feel like I might have gone off topic here. Let’s see… so, I’d planned to go to San Francisco to drive with David, Claire, and Matt (in from Hawaii) to Mel’s wedding in Yosemite. The plan went into motion seamlessly this (Thursday) morning, with only one minor hitch: I was too sick to fly today. So I remain in my aforementioned Basement of Solitude. Matt got there fine, though, so don’t worry about him. And David and Claire still live there in some sort of home, so their part in the plan has no problems. I’m currently planning to feel well enough to fly out there tomorrow (Friday) afternoon and pick up the plan from there. Unfortunately, I’m painfully aware that my life doesn’t always conform to my plans. That doesn’t mean I’ve given up hope! No, I fully intend to be on that airplane tomorrow! Most especially during the time it’s flying to San Francisco.

I’ve been sick for about a week-and-a-half with all kinds of symptoms that have ranged from nuts to bonkers. I’ve been writing when I’ve felt up to it, which hasn’t been nearly enough for me. I miss writing when I don’t do it and I always fear I’m going to forget things, such as what made a particular situation special enough to write about. I’ve been keeping notes, which I’m planning to use to complete some posts over the next week about important things like my great new doctors, their great new discoveries, their great new plans for me, and what’s already gone wrong. In fact:

Reid Levin will return in “Hallucinations Slow Forward Momentum, But Fail To Stop It.”

That’s a teaser to get you to keep reading. Reid’ll probably return before that, though, with an update on making it to San Francisco. That update will probably also contain lots of hopes and wishes and demands that Yosemite National Park stop being so on fire.

Luckily, I’ve learned to be very flexible with plans.

–reid.



*Unused alternate sentence I prepared but am glad no one will ever read: I’d like to point out that my very-clearly-sarcastic remarks about moving to California were taken way too seriously by both David and Claire, so I bear absolutely no responsibility for their miserable new life in California.



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.