I Am, Once Again, Fighting For My Life Against Leukemia.
As of January 6, 2015, I am, once again, fighting for my life against leukemia.
On January 6, ironically one very late night before the seventh celebration of Reidmission (January 7, 2008: the date my original leukemia went into remission), I was diagnosed with a recurrence of my long-thought-dead-leukemia.
It’s the exact same kind of leukemia that I had before: pre-b-cell acute lymphoblastic leukemia without the Philadelphia chromosome. And just to make me feel at home, I’ve already had my first case of pancreatitis.
The process for getting rid of this particular case of ALL has been quite different than fighting it off the first time. It’s taken much more energy–and will continue to take more energy, including a bone marrow transplant from my sister. Thusly, I haven’t even been able to write about it until just now, much to my chagrin. In fact, I recognized very early that I wasn’t going to be able to write everything down about this bout with leukemia. I’ll do my best to write when I can.
In the meantime, if you’d you’d like stay apprised of what’s going on, I’d encourage you to visit my Caring Bridge website for the most current updates (not quite minute-by-minute, but still the fastest) on what’s going on with me. It’s also setup to allow you to le leave non-obligatory comments if you feel so obliged.
Thanks a bunch to the friends and family that helped get that website online. Once again, it is apparent to me how much I need my family and friends to get through this.
It’s The December Solstice…
Just remember, for the next six months, every day is a little brighter than the previous one.
7 Years Alive! Plus: I’m Afraid To Get Into My Bed, Which Is Where I Traditionally Sleep
This is not at all how I intended to start this post, but check this out. I took a glance at the “At a Glance” section of all the numbers on my blog and noticed some kind of magical mathematical blog achievement (blogchievement) wherein the number of posts I’ve written and posted is almost exactly equal to the number of comments that have been made by the likes of you, if you use some very complicated and impressive math that I figured out how to do all by myself:
Very Complicated And Impressive Equation: Posts*100=Comments
Look, I realize that it’s a little off. The thing is that the number of comments would be exactly 100 times more than the number of my blog posts, but I didn’t notice this magical maths until after I responded to someone else’s comment with my own comment. Since that last comment was by me, it doesn’t really count. I’m fairly certain this is how Stephen Hawking justifies his complex calculations. “Sure, I filled up eight chalk boards, but something’s just not working… I’ll erase this part about E equaling MC². Eureka! I’ve done it again!” is what he probably exclaims to himself as he coughs on all that chalkdust.
Like I said, this is not all how I intended to start off this blog entry, but I noticed it and I was obviously caught up with it. That rarely happens with me and any sort of math.
However, that being said, I just celebrated Alive Day on December 6, which will lead to more math in just a minute. Stick with me while I remind and explain Alive Day. For those of you that don’t remember or never read any previous posts from this time of year, Alive Day is the anniversary of my diagnosis with leukemia. It may seem strange to celebrate the day I was diagnosed with cancer, but had I not been diagnosed that day, I may very well have died. I’d spent months visiting various doctors, trying to find out what was wrong with me. During all this time, the bad stuff that leukemia does to the blood in the body was done to a very advanced degree. So I was very lucky that I left New York, came to Denver, and was almost immediately diagnosed so that I could be treated.
There’s math associated with this particular Alive Day (I don’t lie) which is that I was on chemotherapy for exactly three-and-a-half years, which is the normal amount of time that a man has to be on chemo for leukemia (women do two-and-a-half years, because they don’t have all the dangly bits that men have in which leukemia likes to hide).(I should clarify: leukemia likes to hide in cerebrospinal fluid that surrounds the brain and spine, and women absolutely have CSF, brains, and spines that are just as good as men’s, but they don’t have testicles, in which leukemia also likes to hide in men).(See. spines are sort of dangly and so I didn’t want there to be any confusion.) (Phew, this is too much parenthetical notation, I gotta get out of here…)
SO, three-and-half years of chemo. For me, that meant a lot side adventures, including cranial radiation, hemorrhagic pancreatitis, two not-hemorrhagic bouts with pancreatitis, a psychotic break where I thought I was asleep for two-and-a-half days and everyone else thought my brain had up and broke, a ten day period of delirium that I can’t remember, because delirium is state in which one can’t form short-term memories, getting a big ulcerated radiation burn on my back that went all the way to my spine that didn’t get fixed for several years, paralyzed body parts, and being traked (not a word, but should be shorthand for getting a tracheostomy). It was all kinds of fun. If you weren’t around, you really missed out.
The math (finally, the math) is that, as of Alive Day 7, I’ve been recovering from chemotherapy for the same exact amount of time that I was on chemotherapy. Three-and-a-half years. On Alive Day, I was in a celebratory mood about being alive for seven years against a tremendous number of odds. I saw a movie with my dad and had lunch with my folks and my friend Matt. Math came up again on December 7, when I realized that every day I was recovering was now a day longer than I’d been on chemo and radiation. That sort of bummed me out. I mean, knowing that Alive Day 7 was coming bummed me out from time-to-time, especially over the summer. I never, ever, in my wildest dreams thought it’d take me longer to recover from chemotherapy than to finish a long course of chemotherapy.
In fact, the night I was diagnosed (December 6, 2007), I was told I’d probably spend 30 days receiving chemo in Denver and then I could probably return to New York, where I could receive chemo treatments while going about a slightly more chemoey version of what had been my semi-normal life. But then I got hemorrhagic pancreatitis, and New York was pretty much off the table. Another bummer. But, when I was told when the end-date for my treatment would be (May 11, 2010), I was naïvely confident that I would simply return to New York the following summer. Another reality check, another bummer.
I had to wean off medications, I had to lie in a hyperbaric oxygen chamber for a month so there would be enough blood flowing to my ulcerated radiation burn to get out all of the necrotic and radiated tissue so that a plastic surgeon could close up the hole in my back, I had to undergo tests to identify and work to get rid of my radiculopathies, diabetes from the anti-psychotic medication I take to keep my tactile hallucinations under control (read this),I had to wean off medications.
Wait, did I already mention having to wean off medications? Yes. It’s because the system is broken and it makes me mad. It turns out that when a doctor puts a patient on tons of medications, there’s not really anyone or anywhere to help get off those medications unless the medications are being abused. For people like me that followed all of my doctors’ orders but had become physically dependent on some of my meds (which is different from addiction because I wasn’t abusing those medications, I was following strict orders), after chemo, I was left adrift still on dozens of medications. I got off of most of them just with the help of my mom. But certain meds, especially methadone (read this) of which I’m still working to get off the successive pills for the successive pills that aren’t methadone (I’m sooooo close) require professional help.
A large part of them problem with recovering, I know now, is that I suffered brain and nervous system damage during chemo. I have a brain injury and my nervous system is in a state of disarray. I can say those things now because they’re true and I’ve accepted them. My nervous system, at least, is slowly repairing itself. The same can’t be said for my brain. In fact, it’s hard to say much about my brain. We know that repeatedly injecting toxic chemotherapy drugs into my CSF covered an entire hemisphere of my brain with a chemical burn. But we also suspect that the electrical signals that control certain brain functions are not firing right. And the reality check there is that science can’t fix that in 2014. Those electrical impulses are not even something we really understand. Which is kind of humbling and amazing at the same time.
As a result of my brain damage, I’ve suffered for a year-and-a-half now from tactile hallucinations. I saw myriad neurologists about the hallucinations, most all of whom said the hallucinations must be a psychiatric problem. I visited the Mayo Clinic in Minnesota (in February–not ideal) and they were completely unable to help me with my hallucinations. They’re so realistic that if I hadn’t been going through this for so long, I’d swear real people were touching me, torturing me, and molesting me. But I know now it’s a result of my brain damage. It took two years after chemo for them to start and while I’ve had some good nights where they don’t appear, I’ve had to live with them almost every night since last July.
Like I said up above, I’m extremely close to being off the narcotic that was used to replace another narcotic that was used to replace methadone in June. This weird tradeoff of narcotics is not how someone who hasn’t abused medications prescribed by a doctor normally gets off of whatever they were prescribed. It’s how heroin addicts are weaned off of heroin. I’ve worked with two separate drug addiction specialists since May and neither ever seemed to understand that I wasn’t abusing methadone–I just needed help getting off of it. I wanted off of it. And I was never on it because I took heroin. I was put on it for pain during my six month hospital stay in 2008 and I successfully weaned myself off of almost all of it during chemo. I just needed help and I never found a person that would have been more appropriate to help me.
Part of going off a narcotic is that the lower the amount being taken, the more the brain wants to hang on to the drug. Withdrawal for titrating down from large amounts is easy, but–at least to me–it’s oddly inverted for the smallest titrations. As of about two weeks ago, I’ve been taking one quarter of a pill every three days. Before that, I had been taking one quarter of a pill two days in a row, with one day off in between. This has definitely been the hardest part of the wean so far. I’ve been experiencing visual and audio hallucinations, sweats, chills, not knowing where I am, terrible headaches, intense dizzy spells, and a fierce comeback of my worst tactile hallucinations. It’s especially weird, but true, that I only experience hallucinations when I’m lying down in bed. So, naturally, I’ve been afraid to go to bed.
Between avoiding bed and laying in bed and feeling like I’m being haunted by demons all night, with an array of visual, audio, and tactile hallucinations, plus not knowing where I am, I’m not getting the sleep I need. That creates a huge problem. It makes it so I can’t do anything I want to do. Sleep deprivation keeps me from my friends, it keeps me from parties, it keeps me from cleaning my room, it keeps me from playing music, and it keeps me from writing. I started writing this on December 7, and it’s now December 15. I’m thrilled that I found the energy to finish it, but I’m again bummed that I couldn’t put this out on Alive Day and that I haven’t been able to write more blog entries. There’s a lot more I want to write about. Some of them are things I’ve wanted to write about for years. For some of those, I have drafts, and others, just ideas.
I’m mad and I’m bummed. Not with any one doctor or practice, but with our medical system. It just isn’t equipped to treat someone list me. And while I haven’t found anyone else experiencing tactile hallucinations (part of me expects I never will), there are tons of people just like me that are orphans of the medical system (a term coined by my psychiatrist). Not only do the medical resources to treat us simply not fully exist, but very few doctors have the courage to take on cases that they so completely don’t understand and say, “I don’t know how we’re going to treat you, but we’re going to try everything we can.”
In a way, it’s a result of living in 2014. One day, I’m sure all of my conditions will be understood and treatable. But they’re not right now and I’ve had too many doctors send me away because they’re scared of the unknown. The medical field moves fast, but medical mysteries move faster. I am certain that between me and my most trusted doctors, we will juryrig a way to make me better, to get rid of my tactile hallucinations once and for all. I’m also certain that one day, that won’t be necessary–science, the medical field, and especially the way doctors treat patients will be able to take on brain damage and nervous system damage like mine. I can’t wait.
P.S. (Update): I read through this post and realized I never mentioned that my radiation was cranial in nature, meaning it was shot directly into my brain. I guess brain damage can make me forget about how I got my brain damage. Oh well.
Trust, M.D. Is A Reid Killer.
I’ve had a crazy bad headache accompanied by dizziness for two weeks.
To relieve these symptoms, I was prescribed a migraine medication by a doctor at my PCP’s clinic. Wouldn’t you just know it, but that particular medication, when taken with another medication I’m on, could’ve killed me in an extremely painful manner. Luckily, before I could take enough of the new medication, my psychiatrist intervened, saving me from a painful, horrible death.
There are four important things I have to point out about this exciting situation:
1) The doctor that prescribed the migraine medication had a list of all my medications. We make it a habit to make sure all of my doctors are up-to-date on my current medications.
2) I only use one pharmacy, so they know all of the medications I’m currently taking, too.
3) This thrilling situation really pushed my feelings of not being able to trust the people I expect to be treating me to a whole new level.
4) I love my psychiatrist. He always has my back. Unfortunately, I suspect he’s the only doctor I feel like I can trust.
After having found myself alive and still having headaches and dizziness after a potentially Reid-killing scenario, my PCP said she would prescribe a different, non-Reid-killing-medication. The funny thing is–get this–she decided to call in a different medication to the pharmacy than the one she had indicated she was going to call in. The punchline, as I’m sure you’ve already guessed, is that she sent in a prescription for another medication that is listed on her computer and the pharmacy’s computer as a medication that could kill me. Mark one (million) up for my mom for catching that one (and the other 999,999 things she’s been on top of)!
There are three important things I have to point out about this super-duper situation:
1) Yeah, I can’t trust anyone but my psychiatrist about my health anymore.
2) I’m really lucky my mom stays on top of everything related to my health.
I’m getting an MRI of my brain tomorrow. I’m guessing it will show that my brain is spinning around rapidly inside my skull.
So, typical week.
My Pancreas Strikes Again: I Got Diabetes From One Of My Meds (An Anomalously Negative Post For Me)
I hate my body. I’ve hated it since I was five-years-old and started getting beat-up for being bigger than most the other kids. It started as a tall and a fat thing. Little guys would jump on my back and pull me down to the pavement to prove their worth. Other big guys would just sucker punch me and then kick the shit out of me because they thought it was funny.
I don’t hate my height anymore. That passed when the last little guy jumped on my back. But I’m fat; I’ve been fat since I had my tonsils and adenoids taken out at age four. It didn’t really show until I was five. I’d been a wispy little thing, destined to be thin and tall. But something changed all that.
I played soccer, I was on swim team, I played baseball, and I even played j.v. tennis very poorly. I’ve had personal trainers at gyms. The point is, I was active. And I ate well, too. My mom always fed me (and still does) healthy meals. I didn’t try a Twinkie until I was 21, far from home. But it didn’t matter.
I’m fat and I’ve never been able to solve that problem.
It’s always been something I’ve hated about myself, but, in the past few years it’s become something that’s scared the hell out of me. It’s always in the back of my mind, and I’ve even talked to doctors about it. I suffered major, major side effects from chemo and radiation that have left me seven years away from the life I want and wondering when, and if, I’ll ever have that life. The major problems I’m dealing with now are nervous system damage and brain damage, which have no sort of timeline to being “fixed.”
That’s where my fear of being so overweight comes in. What if I finally get better just in time to have a heart attack or a lifetime of diabetes? What the hell kind of victory is that?
I’ve been feeling sick all summer, into the fall. I blamed it on my ongoing withdrawal from a medication I never should have been put on. It turns out it may have been something more nefarious. I was put on a medication in the early springtime of this year that it seems has been chipping away at my pancreatic function. Specifically, its ability to create insulin. I’ve officially been diagnosed with diabetes, which explains a lot. Though whether it’s type-1 or type-2 is still in question.
Due to my young age and the sudden onset of the diabetes, some doctors think I have type-1 diabetes. The irony is that type-1 diabetes isn’t the kind of diabetes overweight people usually have to fear. Due to another major side effect during chemo, namely three life-or-death battles with pancreatitis, my pancreas is weak. The pancreas is responsible for creating insulin which breaks down carbohydrates, which I haven’t had a problem with until–as far as I know–very recently.
I also saw a doctor who thought that due to the severe damage to my pancreas caused by both my pancreatitis and this medication, I might have type-2 diabetes in which my body can’t process the insulin generated by my pancreas. This again, would be ironic, having nothing to do with my weight.
This will hopefully be a short lived side adventure, but there’s a distinct possibility that whatever kind of diabetes I’ve picked up, I may have for life. Every night, my parents have been giving me insulin shots in my stomach (I just can’t bring myself to stick a needle in my gut), and my diet has been very restricted, in an attempt to get my blood sugar down to a normal, safe level.
I normally try to put a positive spin on all of this, but I’ve never made that a requirement of myself or my blog. People are used to me writing about a good outlook mostly because I don’t publish my negative outlooks. I’ve been off of chemo now for the same amount of time that I was on it, three-and-half years, totaling seven years of fighting. I’m no longer fighting cancer; I’m fighting the effects of chemo. Chemo ended three-and-half years ago, but it feels like it won’t ever let me out of its grasp.
I’ve got diabetes with needles we have to stick in my stomach, I still have brain damage that causes me to experience tactile hallucinations at night, and I have a freaking hole in my ear that when I went outside yesterday without it covered, insects wouldn’t leave alone. I’m tired of fighting something that saved my life. I’m tired of fighting something that’s three-and-a-half years gone. I see all these people that have gone through chemo and are now living normal lives. I admit, 100%: I’m jealous. On the other hand, I certainly don’t forget my friends who didn’t make it through chemo.
That being said, I made it through chemotherapy and I’m still here. It was difficult and I felt justifiably victorious at having passed through such a difficult gauntlet. But these delayed-chemotherapy surprises–or “side adventures” as I’ve taken to calling them, as if my life were a game–just keep popping up, sometimes requiring years of dedicated work to fix, making it very hard to stay positive and keep my eye on the future.
“Chapter 11: That Time I Got That Thing Stuck In My External Ear” (abr.), Sinusitis, and Hail On the Homefront
Heya, Blog Reader,
I have a sinus infection that I think is on the way out. I wasn’t given antibiotics or allowed to see my ENT. I guess I have mixed feelings about not getting antibiotics–I’ve had a lot since chemo and I know the hazards of taking too many. But they usually make me feel better. Instead, I got a nasal spray, and I guess that’s helped clear things up. So that’s fine. The ENT thing was stupid. Basically, I haven’t seen any of my ENTs–who I know by name and vice versa–recently enough to see them again without a referral, which I did not receive. University Hospital, you may have saved my life, your stupid bureaucracy is intolerable.
We had our house redone this summer on the inside and the outside and it was unbelievably stressful for me, and I wasn’t in charge of anything or dealing with misogynistic contractors like my mom had to everyday. I think the stress level of people in the house all day went:
2. Ferris (the dog)
But just because I was third doesn’t mean I wasn’t stressed. I lost 25 pounds, which I’m happy about, but everyone around me tells me was stress weight and not a good way to lose weight. My body image issues probably deserve a blog of their own, but let’s just say I know it wasn’t a good way to lose the weight, but I’m not concerning myself with it too much.
As part of the renovation, we had a new roof put on the top of the house (where one would usually put a roof) and had the house painted and had bad wood boards replaced and it looked great!
Then we had a big hail storm. When I say big, I mean ping-pong sized hail with the density of golf balls. I guess those are kind of the same size, but the individual pieces of hail looked like ping-pong balls and felt like golf balls.
This was what our backyard looked like yesterday:
There’s a giant blue spruce above that glass table that got hammered by hail. The glass table was surprisingly, happily, somehow not broken. But the roof and boards took a big beating and so I may lose some more weight.
Don’t worry, no hail made it into the East Room.
Phew, with all that out of the way, it’s time for another chapter from the beloved 2,034 page medical mystery novel Reid Levin: Medical Mystery – Volume 2:
“Chapter 11: That Time I Got That Thing Stuck In My External Ear” (abr.)
I noticed about two months ago that my right ear hurt any time I slept on it. It hurt to sleep on and then it kept hurting when I wasn’t sleeping on it. It also turned bright red. I took to sleeping on my left side, which I prefer anyway, but my right ear just kept hurting and glowing bright red. A little thingamajig started to form on my ear, which I immediately, in a total state of panic and illogic, assumed were a sac of spider eggs.
Before we go any further: allow me to state that there were not and have never been any spider eggs growing in my body. When I get weird bumps that start growing, I fear that a spider has laid her eggs in me because I had a substitute teacher in Fourth Grade tell me about a spider laying eggs to someone she knew. I think she made up a lot of stuff, or couldn’t tell the difference between awake time and asleep time. She told us all kinds of crazy stuff, like how she drove past this mystical car crash where everyone was on fire, then she thought better of it, so she turned around to help, but it was completely gone, like there had been no car crash in the first place. So the spider thing is completely irrational and I know that, and I usually play it off as a joke. Now you know the truth: I’m only kind of joking.
Teachers have a real effect on kid’s lives and I want to salute all those teachers who take this responsibility seriously and don’t just spend years fucking kids up because they think it would be funny. There have to be tons of people who get a teaching certificate just to mess up kids lives and we don’t even know it until kids go to the next grade and can’t do multiplication.
You can read more about this stuff in the unabridged version of this chapter, but, this being the abridged version, we gotta get back to my outer ear.
A thingamajig was growing on my ear and it was redder than the rest of my red ear. I went to the dermatologist who told me I had a corn on my ear cartilage, which was a genetic disease that only people over 80-years-of-age usually get. He gave me an antibiotic cream to put on it and told me to cut a hole in a pillow so as not to aggravate my cartilage when sleeping.
I started sleeping mostly on my left side, my previously mentioned prefered side, with my ear inside this hole I’d fashioned in one of those memory foam pillows. A few things happened:
1) My right ear started getting better.
2) My left ear started doing the whole turning red and painful thing.
3) I was scolded for sleeping on one side of my body by several of my doctors.
Eventually, both ears had some sort of bump on them. The one on the left responded quickly and appropriately to the antibiotic cream and I was able to sleep on the pillow with the hole in it on my left (prefered) side. The one on the right just had it out for me. It just wouldn’t go away or stop hurting if I slept on the hole pillow with it. It would go away for a while if I didn’t sleep on it for at least a week. If I slept on any normal kind of pillow, both ears got mad. So the hole pillow on my left (better) side became the obvious go-to.
For some reason, even though I was still putting antibiotic cream on it and not sleeping on it, the little thingamajig grew back on my right ear. Thus, I decided to return to the dermatologist.
Unfortunately, my dermatologist of 18 years wasn’t in. He’s definitely the doctor I’ve had the longest. That doesn’t mean I like him most, it just means he hasn’t messed me up. Which, in itself, is saying a lot. I’ve had a lot of doctors and, well, things happen.
Unfortunately, the thingamajig had to be removed from the cartilage of my right ear, which unfortunately meant that my ear would have to be cut into because that’s how you get to the cartilage, if you’re ever looking for it. The stand-in dermatologist told me I did not have a thingamajig, but rather chondrodermatitis nodularis helicis. I WAS CLOSE. She seemed nice enough and knowledgeable about getting rid of this thing so I let her get it out.
She proved to be a veteran at excising bits of ear tissue (pictured here working on a previous patient), but I still don’t like knives and needles near my face. They make me feel like I’m a pumpkin being carved for Halloween.
Oh wait, that wasn’t her. That was Mike Tyson biting off part of Evander Holyfield’s ear (possibly not for dermatological reasons). Ohohoho! Shame on me! But, in my defense, I do look like I had a bite taken out of my ear. It looks a lot like Mike Tyson or a tiny shark bit it off. It’s going to take several months to heal, which I can deal with. The interim-dermatologist made sure to tell me that she’d only seen chondrodermatitis nodularis helicis on the ears of people in their 80s.
I told her I needed people to stop telling me that.
End of Chapter 11 (abr.)
Broncos Win In Season Opener ’14–And So Do I.
Last Sunday, I took advantage of the great opportunity of going to watch the season opener of the Denver Broncos with my dad. He has season tickets, but every year he sells all but the first game for gold doubloons and rubies, sapphires, diamonds, and majestic silks from the Far East. At least that’s the stuff I imagine people sell season tickets for. I wouldn’t even go every week, but they seem like a hot commodity. Or like hot cakes. You can’t hold onto those things even if you try–people just gobble ‘em up while you’re reaching for the syrup. That’s it, they’re gone.
Anyway, it was a great game, even if the Broncos were a little rusty around the edges in the second half. I say they were just playing Colorado Rockies style sports–gain a big lead, then let it narrow to keep people in their seats. Brilliant! It was great to see Peyton Manning play live in Mile High Stadium (yeah, you can call it “Whatever, Whatever at Mile High”, but it’ll always be Mile High Stadium to me). The Broncos defeated the Colts, which was especially important and disatisfying to the very drunk guy sitting next to me (no, not my dad–the guy on the other side), whose fantasy football team was getting its “ass kicked by his sister.” On the other (better) hand, my dad and I had a great time at the game, even though both of us have sisters out there that don’t need fantasy football to kick our asses.
Since I’ve been home from New York, my dad has invited me every year to the season opener. I haven’t always gone, because sometimes I haven’t felt up to it. There have been years I’ve felt up to going but had to leave the game very early. I wasn’t feeling great on Sunday, but I really wanted to go and that was that.
My dad always parks in this place called Diamond Hill that’s controlled by a church that must make bajillions of dollars off people that park not only in the church parking lot, but throughout all of the office complexes on Diamond Hill, too. Diamond Hill is a very half-appropriate name, in that it’s very hilly, but no diamonds have ever been excavated from it, as far as anyone I asked knew. And it’s not shaped like a diamond. It’s named after the office park, which isn’t diamond shaped or anything, either.
But it’s very hilly, that’s what’s important. Even in the high plains, there are a lot of hills in the way of things. In this case, Diamond Hill is in the way of itself and Mile High Stadium. It’s one of those hills that goes uphill both ways. I don’t know how that’s possible, but it is.
Anyway, my dad always parks in the same place, which for Denverites point of reference is north of the Children’s Museum and Elitch’s, on the other side of I-25. For non-Denverites, it’s basically a hilly mile to and from the stadium. Every year I’ve attended a season opener with my dad, I’ve had to walk back and forth over this hilly mile, and every year, I’ve had to stop to catch my breath, slow down on the biggest hills, and be very careful about my balance.
Not this year. I walked both ways without stopping to give my legs a break, I never had to catch my breath, and I never even thought about my balance. As I walked triumphantly from the stadium to the car, all I could think of was the first time I was in the stadium after getting sick. In 2008, only months after getting out of the hospital, all five members of my family went to the Democratic National Convention to see Barack Obama nominated as our party’s candidate for president.
As I walked, with steady breath, up Diamond Hill, all I could think of was being in a wheelchair, relying on my entire family to get me into the stadium, out of the stadium through massive crowds, and then force me on to a tightly-packed light rail car. I had no ability mobility by myself. And here I am, able to walk to and from our parking spot to a game six years later.
I’d never claim it was fast progress, but it’s progress I can see. I climbed that hill with no help from anyone, and I’m proud that A) I can actually see how far I’ve come (I’m not usually very good at that, if able at all) and that, B) I have come this far, even if it’s taken six years.
Writing, Summer From Hell
I’ve written a tremendous amount in my WordPress (the Internet software that powers my blog) over the past year, but I’ve only posted a tiny fraction of it. What always seems to happen is that I start writing about an important current event, but I don’t quite finish those entries. I have every intent to finish them, but by the time I get back to them, they don’t seem nearly as important to me as what’s going on more currently (currentlier?). There’s always something more current and more important-seeming that I start writing about and don’t quite finish. I’m going to do my best to write shorter blogs so this doesn’t keep happening.
This has been a bad year for me. It started with lots of fruitless investigation into my tactile hallucinations. Even in the nation’s supposed best medical center, the Mayo Clinic, no one had any answers for me. I have a small, unfinished entry about the Mayo Clinic that I’ll post eventually.
Before that though, I’d like to write about this past summer. It’s been awful, and not because of my weird hallucinations, but because of bad doctors and bad practices. And an unexpected death in the family.
1) I finally narrowed down my rolodex of doctors to a number I could count on one hand, which was a great feeling. I knew all my doctors well and I trusted them. I had one gap in my treatment, though, which was a primary care physician (PCP), to both take care of me when I randomly became ill and to be the quarterback who kept my other doctors on the same page in treating me. Lo-and-behold, one of my trusted doctors had a great PCP, who she insisted would be great for me.
2) I took her advice and made an appointment with her PCP, and I loved him. I felt he immediately understood my weird circumstances and saw he was very excited to coordinate with all my other doctors about how to go about trying to take on my hallucinations. I also found out that he was an addiction specialist. I told him about my trials and tribulations with Methadone.
2.a) I’d been put on 200mg a day of Methadone to treat my pain during my hospital stay at the beginning of chemo in early 2008. In 2009, still on chemo, I weaned down to 10mg a day over ten months, but I suffered massive withdrawal when I tried to wean from 10mg to 7.5mg a day. I was told I couldn’t go through withdrawal during chemo because it was too much strain on my already weak system, so I had to wait until after chemo to get down to 7.5mg.
With no help from the pain management clinic I was seeing at the time (they were supposed
3) For three years after chemo, no one wanted to help me off that last little bit of Methadone. And all of a sudden, here was a guy I really liked who was willing to help me get off this medication completely. It's not even really that Methadone has a stigma to it (it's often used to help heroin patients beat their addiction), it prevented me from taking a wide array of non-opioid drugs, like migraine medications. I never wanted to be on opioids in the first place, so the idea of getting off Methadone and being able to find non-opioid pain drugs has been massively appealing since I was first put on it.
4) My new PCP seemed as excited about getting me off Methadone as I did. Although his is a family practice, one of the first things I realize in retrospect was that his plan was for addicts, even though he insisted over and over that I wasn't an addict. He explained that I was never addicted to Methadone–meaning I never took it in a way that wasn’t ordered by a doctor. I followed my doctors’ instructions by taking it to a T and never abused it. I was dependent on Methadone, though, which means that I did everything right by following all the right directions, but my stupid brain still thought it needed it–even though I had no desire to keep taking it.
4.a) Brains are majestic in what they can do and the amount we don’t understand why they do what they do. But they’re also stupid and gullible in lots of ways.
5) Instead of weaning me off the Methadone, my PCP took me off of it cold turkey and put me on OxyCodone. He did this to fool my brain into thinking it was still receiving Methadone. I was then, after two weeks, to go cold turkey on all opioids (which would just be OxyCodone) for a weekend, and then I’d be switched to another medication for six months, called Suboxone, that would help me get through any and all withdrawal.
6) For the first few days after my switch to OxyCodone, my doctor called and adjusted the amount I was taking. He did a lot to make sure I was comfortable, and this made me feel confident that I was in good hands. Then the calls stopped. And I ceased feeling comfortable.
7) I called his office and found out that he was out of town for four weeks. This was a total surprise to me, and I had no idea what to do. His practice has no other doctors, though it does have one physician’s assistant (PA).
8) Their system of communication is also very odd. Everything, from emergent questions to prescriptions went through the receptionist and she decided if they were worthy of sending on to someone else. I understand that when you’re managing a large number of drug addicts, a doctor probably needs a firewall, someone to make sure the calls legitimately need to come through. This non-medically trained receptionist is just not the right person to do that.
9) I got a message through to the PA about my pain and discomfort. She prescribed a medication to help me.
10) The pharmacist called a short time later and said that the medication I’d been prescribed could kill me.
11) We got notice back to the receptionist, who let our message through to the PA, who prescribed a different medication.
12) The pharmacist called again and said that the new medication would KILL ME EVEN WORSE (or probably something like, “it could be even more deadly,” but I like my way of saying it better). The pharmacist could not get through the firewall to talk to the PA about these deadly meds she was prescribing to me.
13) Between the bad prescriptions, the receptionist not letting the pharmacist talk to the PA, and my doctor being out of town for four weeks, it became apparent no one was really running the show. No one was managing my comfort, yeah, but much worse, no one was going to get me off the OxyCodone in two weeks as had been planned.
14) We turned to the doctor that had recommended my new PCP, who had his personal phone number. We were able to get in touch with him. He was out of the country for four weeks, but said he could coordinate from there.
15) Through various emails that were exchanged, it became clear that he could do some things from afar, but not nearly enough.
16) Unrelated to the medical situation, my grandma passed away very unexpectedly during this debacle. It’s still sad and tragic for my entire family. She was an amazing woman. It was hard managing my health and her loss at the same time. She deserves her own entry so I’ll wait to write more about her until it’s just about her. Suffice it to say, I miss my grandma a lot.
17) When my PCP finally got back to town, I had been on OxyCodone for five weeks.
18) OxyCodone is much more addictive than Methadone.
19) As if no weird trip out of town without telling anyone had happened, my doctor ordered me to go off OxyCodone the weekend after he returned.
20) The problem was that I had become very dependent on OxyCodone over five weeks and my stupid brain really didn’t want me to go off all opioids cold turkey. I think my brain may have also noticed that it had been tricked about that whole going off the Methadone thing around this time, so it was pretty angry with me.
21) I did it. I went off the OxyCodone. My brain immediately made my body go haywire. My pulse dropped radically, down to a level that I couldn’t take any of my anti-tactile hallucination medications. When I tried to sleep (the time my tactile hallucinations come on), my hallucinations had changed into something absolutely terrifying. They’d been bad before, but nothing like this.
22) The hallucinations involved my entire body being converted to spiky metal micro-structures. There were metal spiders sewing layers of small, painful metal objects to every inch of my skin. They were also weaving different parts of my body together. Keep in mind, these are tactile hallucinations, so I can’t see or hear them, I can just feel them. There was no way to brush them off or to stop them. They just kept building metal structures all over me, piercing my skin, and sewing tender parts of my body together. It was the most pain my brain had ever put me through–my body was racked with unbelievable pain even though the pain was an illusion created in my brain.
23) The tactile hallucinations stopped being restricted to when I was laying bed. They were happening whenever and wherever I was, no matter the position.
24) I couldn’t sleep during this at all. It was more than miserable. It was torture. It lasted three nights and by the third night, I wasn’t sure that I was going to survive. It was a terrible feeling in the pit of my stomach and something I didn’t want to think about, but couldn’t get out of my head. Sleep deprivation and torture, even if they were coming from my own brain, put me on the razor’s edge.
25) My parents switched turns staying up with me. They had to switch because I caused whoever was with me massive sleep deprivation. There wasn’t anything I could really do other than holler and whimper. I have no clue what I’d have done without them.
26) On the third day, after three nights of hell, which was a Monday, my pulse was a steady 40. This is called bradycardia for people that aren’t very fit athletes, and it’s very dangerous for anyone who’s not a very fit athlete.
27) My PCP wouldn’t put me on the new medication, Suboxone, that was supposed to help me with withdrawal unless my pulse was holding steady above 70. I also couldn’t take my hallucination medications under these circumstances. My PCP told me to go to the ED (ER).
28) The hospital played with my liquids and found that pumping me full of them made my pulse go up. They gave me some of my hallucination medication (since my hallucinations felt like they were all over me even in the hospital), which made my pulse drop again. They finally got it figured out, though I’m not really sure how.
29) By the time I was leaving the hospital, my PCP had left his office for the day.
30) Another night of hallucinations, however, my pulse went up high enough at one point that I could take one of my meds. I fell asleep, even as metal spiders were crawling all over me and I got five hours of sleep. It was the sweetest five hours of sleep I’ve ever had.
31) The next day, we went into the PCP’s office at 7:45 AM so we could get me on the Suboxone. A lot of stupid stuff happened. They asked where my Suboxone was, as I was apparently supposed to bring it with me, despite never being told to do so. In fact, I didn’t even have a prescription for the stuff. When my normal pharmacy said they didn’t have enough to fill the order, we called around to other pharmacies until we found one that could fill the whole order.
32) It turns out Suboxone is very expensive without insurance and that insurance needed prior authorization to pay for the drug. We were told to just buy some out of pocket and the office would get the prior authorization taken care of. Paying out of pocket even for a few doses was extremely expensive. And, for whatever reason, the receptionist took four days to even initiate the prior authorization request.
33) By that time, I needed more, so we just bought it.
34) My PCP once again started making contact every day, adjusting the amount of Suboxone I was taking, with the goal of getting me to a place of feeling like I hadn’t gone cold turkey on OxyCodone.
35) I felt very sick to my stomach taking the Suboxone. With a little research, my mom found that the Suboxone I’d been prescribed contained a second, inactive drug called naloxone. Naloxone is known for causing stomach aches, though that’s not it’s main purpose. It’s main purpose is to keep patients who are taking Suboxone from getting high on heroin.
36) I guess it worked, because I didn’t get high on heroin. The proof is in the pudding, even if I didn’t taste any of the pudding.
37) We talked to my PCP about the naloxone. This is where I realized I was being treated as an addict and not a dependent. I had no need for naloxone, as I never did or sought to do heroin. He very reluctantly prescribed a version of Suboxone without naloxone in it.
38) We went through the insurance pre-approval baloney again. The receptionist asked why we’d need it, as if there hadn’t been a problem with it before. Again, we ended up buying the expensive drug out of pocket.
39) Communication stopped. I heard nothing from my PCP for three weeks.
40) Between all this (1-39… I wrote more than I meant to), I decided to switch to a different doctor.
41) This new doctor was recommended by another of my trusted handful of doctors. This new doctor is not a PCP; he deals exclusively with addiction. It took some convincing, but he eventually came around to understanding that I did not want to go back on either Methadone or OxyCodone.
42) The new doctor immediately started weaning me off Suboxone.
43) It turns out Suboxone is an opioid that’s more addictive than OxyCodone. And my PCP was going to have me on it for six months. You can’t see it, but I’m throwing my arms up in total confusion right now. You’ll just have to trust me.
44) The new doctor and I worked out a wean schedule for the Suboxone. It was supposed to be done by the end of August, though the symptoms would likely last through mid-September. This was fine with me, because I just wanted off all these damn opioids and I just wanted to be done with the main focus of my summer being weaning off difficult-to-wean-off-of medications. It was also nice to have an actual deadline for something–the last time I had one of those was my countdown to being off chemo.
45) Everything was going fine, the schedule was working fine, until one night after I’d gone down a dose and I started having audio hallucinations. I was hearing voices in my bedroom. It was freaky.
46) My new doctor told me to go back up a dose on the Suboxone and that we were going to slow the wean down. Although this destroyed my deadline, I’m ultimately happier not hearing voices in my room at night.
47) That being said, I’m still experiencing lots of withdrawal effects and most days I simply do not feel well at all. No audio hallucinations, but a load of other bad feelings. I feel like I’ve had my summer stolen by negligence and “professionals” that just don’t care.
48) We’ll be playing the wean by ear from now on. If I feel I can go down, I will. But it’s going to be slower. I have a feeling it will last through much of September.
49) I wrote way more than I wanted to, but it’s good to have gotten this all off my chest.
Shorter next time, for sure,
Happy Birthday, Vik.
Tuesday April 01st 2014, 11:59 pm
Filed under: Family
Victoria, this has hung on the refrigerator in our basement since you drew it and gave it to my mom, your Aunt Laure. I don’t know if it’s a very fair representation of all you achieved in your short life, but I see it every day and remember the first time I met you. You were a little cutie and a tiny goofball. I think about you and miss you every single day. You would have been 22-years-old today. It’s been almost a year since the world’s been robbed of your beautiful smile. I love you and I’m sorry you weren’t here to celebrate with us.
Return To The Cosmos… And To Science.
34 years after his hero Carl Sagan first gave the world “Cosmos,” Neil deGrasse Tyson, the director of New York City’s Hayden Planetarium, hosted the first episode of a new “Cosmos” series tonight. It was fantastic.
When I was younger, I had a huge passion for science. This passion was spurred on by shows like “3-2-1 Contact,” “Bill Nye the Science Guy,” and countless reruns of Carl Sagan’s original “Cosmos: A Personal Voyage.” Although the original “Cosmos” series from 1980 was made up of only 13 episodes, they felt like new adventures every time I watched them.
Sagan didn’t just make science unbelievably interesting to me in an easy-to-understand way, he showed why science was such an easy subject to embrace and love. It’s the story of us all, of all that has ever existed, and of all that will ever exist. “We are all made of star-stuff,” as he famously said.
Although the world tragically lost Carl Sagan in 1996, his work lives on. With the invention of YouTube, I watched many of his old television specials in college. Even without the assistance of drugs, I found what he taught to be mind-blowing, just as “Cosmos” had been. I even read a few of the scores of books he wrote and/or edited. Dr. Sagan made science so obvious and so wonderfully magnificent at the same time.
Unfortunately, by the time I was in college, I had been discouraged from being anything more than an amateur scientific observer due to two very specific issues. First, I posses scientifically-proven terrible mathematical genes, a trait shared by the genes of everyone in my family. I probably could have overcome those faulty genes and learned not to fearhate math if not for the second issue. Beginning in the eighth grade, I had an unending series of science teachers and professors who could be ranked from “less-than-inspiring” to “downright-unhappy-with-having-to-teach-science-and-eager-to-take-it-out-on-their-students.”
By the middle of high school, I held little interest in a professional life in the field of one of my greatest passions. By that time, I had enough other things to be passionate about that it didn’t bother me. I went to college in New York City and studied acting and writing and continued with another of my longtime passions, comedy. I even took a class called “The Philosophy of Science” to satisfy one of my science credit requirements without having to do anything too sciencey. And especially not mathy in any way, whatsoever.
In my defense, I did date a wonderful, brilliant scientist for many years. But I also vividly remember being in a pharmacy with her, carrying her biology book, the cashier looking at both of us and, apropos of nothing, correctly stating that she was clearly the scientist. My mouth wasn’t even unconsciously pouring goofy nonsense out at the time. It was just that obvious.
I’d left science behind, though not my curious mind. During my time in New York City, both during college and after it, The Hayden Planetarium at the American Museum of Natural history was one of my favorite places to visit. It’s a giant sphere, at the center of which, sits another very large sphere. Throughout the giant, spherical planetarium are dozens of decorated spheres of all different sizes in an exhibit called the “Size Scales of the Universe.” (That’s site’s not all that exciting, but there’s a picture of the inside of the planetarium and some size scale examples, so you have some idea what the hell I’m talking about.)
Each of the smaller spheres represents the size of something when compared to the sphere at the center of the planetarium. For instance, there are models of all the planets in our solar system hanging around the center sphere, to size scale as if the center sphere were the size of the Sun. There are also spheres that represent how big the different parts of atoms would be if the big center sphere were a proton.
Actually, there’s a similar sort of exhibit on the web that you can take a look at to kind of sort of get an idea of what’s in The Hayden Planetarium, The Scale of the Universe, created by Cary Huang. It’s great, but don’t use it as an excuse not to visit the planetarium in all it’s three-dimensional, gigantic, spherical glory. Seriously, I’ll know.
I never cease to be amazed at how the Size Scales of the Universe exhibit made it so easy for me to suddenly comprehend the most massive of size relationships between so many things in our universe, from the very largest macroscopic galaxies to the tiniest microscopic parts of the cells in our bodies. Standing in that room always seems both so obvious and so wonderfully magnificent at the same time. When I’m in there, I’m always reminded of my youthful passion for science and the people that made it so obvious and so wonderfully magnificent, people like Carl Sagan.
I first became aware of Neil deGrasse Tyson not from my many visits to the planetarium of which he is the director, but rather through that other passion of mine I mentioned, comedy. Tyson has appeared numerous times over the years on “The Daily Show with Jon Stewart,” and its sister show “The Colbert Report.” I won’t explain what those are, because you should just know. I try never to miss either show, but if there are ever times when I go to extreme lengths not to miss an episode, it’s when Tyson is the guest.
He’s funny and personable and, over the past 15-or-so years, like Bill Nye, he has been an advocate for the absolute necessity of Americans to renew their interest in science. Both on a “wow, that’s neat!” way and a governmental “we’ll put money into this!” way. Every time he appears on one of these shows, I find what he had to say about science absolutely fascinating. I’ve always thought his advocacy for a renewed focus on science in America is extremely important. Science has been getting trampled on in this country for at least half of my life, which I find extremely offensive and, quite honestly, just plain bizarre. How could you not “believe in” science? That’s not even how it works.
I even bumped into Dr. Tyson a few times in New York. I think the longest conversation we ever had was, “Hey, I’m a huge fan of your work!” and him running away yelling, “Thanks! I don’t just do ‘The Daily Show!'” I knew that by the time of that run-in, but I’m sure he got that all the time. I also ran into him once when I had grown a large, gnarly beard for the part I was playing in “Hamlet” (Old Hamlet [The Force ghost of Hamlet’s murdered father, played by James Earl Jones in “The Lion King”]). It was also the middle of the winter and I was wearing a long trenchcoat. I attribute the large beard, the trenchcoat, and my over all largeness to him not making eye contact with me and quickly ushering his children inside the nearest building very quickly.
Even though I felt terrible today, physically, mentally, and emotionally, and even though I spent most of the day in bed, there was no chance I was going to miss the premiere of the all-new “Cosmos.” This premiere of this sequel to Carl Sagan’s original “Cosmos: A Personal Voyage,” subtitled “A Spacetime Odyssey,” had been on my schedule ever since I read an article about Seth MacFarlane producing it all the way back in some previous year like 2011 or maybe even 2010 (it feels like a few years ago). As soon as commercials for the new show started airing, my parents and I agreed we were all going to watch it together, no matter what.
As I watched, I found myself elated and literally (yes, literally) jumping out of my seat in excitement. I couldn’t stop saying “I’m loving this!” throughout the broadcast, nor could my parents. We only quieted down for fear we’d miss something. Lo-and-behold, this new “Cosmos” hosted by Neil deGrasse Tyson, has reignited a passion for science that I’ve not felt in many years. The chances are almost infinitesimally low that it’ll change my mind and convince me to ever become a professional scientist, but I definitely have a warm place in my heart for science that–while never having gone away–was inflamed tonight.
Dr. Tyson made science seem so obvious and so wonderfully magnificent at the same time. I think Dr. Sagan would be proud.
I can’t wait to keep watching it every week. I highly recommend it. And science. Thank you, Seth MacFarlane, Neil deGrasse Tyson, and all the other people involved in creating this brilliant, new, exciting, educational, network television show.
P.S. And, I guess if you can do it, math is probably not bad to learn as a helpful tool to use for a greater understanding of science. But I wouldn’t know anything about that.