Sorry… I Think I Might Have Forgot To Tell You That I’ve Been Home From The Hospital For Awhile.
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!!!
Cliffhanger Writing Expert
*Legal Disclaimer: well, once in a while, anyway.
Me, My Brain Waves, And A Galaxy Far, Far Away.
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.
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.
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 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 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.
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.
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!
In My Hospital Room & Nothing About DR. POISON Is Comforting!
I was just shown to my room. This was on the first table I saw:
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.
I Am Going To Be In The Hospital For A Few Days Starting Thursday.
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.
I’ve Arrived Down The Road. Thank You For Being There For Me.
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.
Neurology Problems Tied Up In A Nice, Neat Little Package; Awaiting Pretty Bow.
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!
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!
That’s it for now!
(for real this time)
A Very Honest Post About My Health In Which The Main Subject Eludes Me.
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.
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!
I’m Not Sitting Around Playing Nintendo.
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.
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.
Friends, Weddings, Happiness, and Health.
I am truly blessed to have so many great friends in my life. It only makes sense that great friends are also great human beings. Naturally, a lot of those great human beings gravitate towards one another as friends, collaborators, and spouses. Over the past several years, I’ve had the honor of attending many weddings and celebrating with many great friends as they married many equally great human beings.
I’ve written before that friends are my drug of choice. When I’m among friends, I am filled with an energy that is otherwise absent from my life. I am more powerful when I have friends around me than when I am alone. Their presence is extraordinarily addictive, lifting me up mentally, emotionally, and physically. I feel wanted and understood and inspired and happy. Who wouldn’t want to feel that way all the time? Eventually, though, without exception, at that inevitable time when we are forced to part and go our separate ways, the tremendous high I get from my friends turns into an intensely bitter withdrawal.
Reuniting with groups of friends is my ultimate motive for attending weddings. I’m sorry, brides and grooms, you’re obviously very important on your wedding day, but what you do best is give the rest of us a reason to celebrate. And what better way to celebrate than with people we love. With friends we don’t see anywhere near enough in our daily (or, too often, yearly) lives. And, yes, celebrating the union of two great human beings. All in an atmosphere ambient with overwhelmingly positive feelings: happiness and friendship and fun and love and togetherness and, maybe most of all, a shared confidence in a wonderful tomorrow for our two great friends.
Despite all my health problems, I’ve attended almost all of my friends’ weddings (though I’ve mostly steered clear of the ones to which I’ve not been invited). I missed Sarah and Tucker’s steampunk wedding a few years ago, for which I’d grown out my chops accordingly. I missed a joyous reunion with friends and with New York City because, for all the energy I spent pushing myself to be there, for all my immense desire and want to be there, my body wouldn’t give. I was just too sick to go.
I’m missing another wedding right now for the same reason. Melissa and Ryan were supposed to be married in Yosemite National Park today, but due to forces beyond their control, they had to move to another location. I’m confident that, though fires drove them from Yosemite, today will be a beautiful, wondrous day. Surrounded by their friends and family, who have gathered to celebrate that bond of love, support, and loyalty that transcends any specific place on a map, to which Mel and Ryan are committing themselves. There is no question that the celebration of their union will be just as grand, that the love and friendship of their guests just as strong, and the pact to which they are both committed just as powerful as it would have been in Yosemite.
Such purely happy moments are emotionally and physically painful to miss. It’s always tough missing bachelor parties and rehearsal dinners. It’s always tough being on the first bus back to the hotel when the party’s just begun. It’s always tough not being a part of the post-wedding antics, whether they’ve taken place in bars or sub shops. Those antics go on to become the stories that are told over and over and over because they’re the best stories. They’re the stories of friends coming together and, after all the pomp and circumstance, being themselves. Being comfortable with one another in a way that only the best of friends can be.
I wish I was a part of all of those stories. I wish I was feeling the high of the energy created by being with my friends today. I wish I could be with Mel and Ryan, celebrating their awesome life event. As sad as it makes me that I can’t be a part of any of those things, I know that today is a happy day. Two great human beings are becoming one whole. There’s nothing better that I could wish for these two great friends.
And so I choose to be happy today. For Melissa and Ryan. For all the guests that are able to reunite because of that special commitment Mel and Ryan have made to each other. And for me, because I realize that having great friends means there will always be more shenanigans that one day turn into the stories we tell over and over and over forever.