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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Welcome to Side B.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

–Reid.



Arapahoe High School Is Being Examined From All Angles; The Larger Problem Is Not.
Friday December 13th 2013, 3:20 pm
Filed under: Uncategorized

Arapahoe High School in Colorado was evacuated today and the school shooter seems to have killed only himself. A tragedy, to be certain. But make no mistake: many children are shot and killed in this country every day and their deaths are not reported on TV. This is not a Colorado problem. This is not a school problem. This is a gun problem that is ignored and/or justified every single day.

–Reid.



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

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

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

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

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

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

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

Yours truly,

–Reid.
Cliffhanger Writing Expert


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



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

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

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

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

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

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

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

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

–Reid.



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.