BMT 74: My 32nd Birthday. My Second Relapse From Leukemia.
As many of you may have heard, I have relapsed a second time with leukemia. Although I cannot remember a lot of what happened last week due to my leukemia treatment, I do remember that there were a lot of people here to support me, many of whom were from out of town: my cousins, friends from high school, awesome (no longer on-line) support group friends, family and the biggest surprise of all, my sisters, who decided to move here from Washington, D.C.
After I was unable to do anything for my big sister Rachel’s birthday, she brought me a hot dog the next day in honor of National Hot Dog Day.
Although I have not felt like myself much over the past couple of weeks, I receive my greatest strength from my friends and family. In the coming days and weeks, I hope to continue to see them (you!).
We are hoping that I will be accepted in a clinical study in Seattle. The doctors there are doing amazing genetic work with leukemia.
Tomorrow is my 32nd Birthday. Despite everything, I will be glad to reach this milestone and share it with family and friends.
“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, Tweeting, Losing Sports Championships. Plus! Special Bonus: Is Being A Dictator All It’s Cracked Up To Be?
I’ve been wanting to write a lot lately, but I have a pinched nerve in my neck. It’s referring pain down to my thumb and forefinger, through the ol’ carpal tunnel, which I believe Chris Christie conspired to close at some point recently, for all but two tendons. In lieu of writing, I tried dictating to Siri, but that just didn’t feel like writing. Because it wasn’t. It was dictating. If there’s one thing I know for certain about my skill set, it’s that I’m a much better writer than dictator (to which the good people of Sincostan can attest).
Then I figured out I could just mash at my iPad screen for an experience similar enough to writing, but without the pain of actually typing. So here I am mashing away! mashmashmash!
Last night, the Broncos were crushed by the Seattle Seahawks in the Super Bowl. As a Denver native, I am obviously a sad fan. I’ve been tweeting about it:
1) As a #Broncos fan, I feel just like Mitt Romney on Election Night. Winning: inevitable. Losing: ha ha! impossible! We’re fools, Mitt. Fools.
2) Hard watching #Broncos blow championship in a night, but way easier than watching #Rockies take four to do the same. Plus that was baseball.
To understand that second one, you need to know, first, that yes, Colorado has a Major League Baseball team (the Colorado Rockies) and that, second, yes, they somehow bungled their way into the “World” Series.
Going into the Series To Determine Which Team Is The Best In The World Despite Its Only Participants Being Based In The USA Save For A Single Canadian Team (how worldly!), the Rockies had won 21 of their last 22 games. Unfortunately, the Rockies’ opponent was a real baseball team, the Boston Red Sox. The Red Sox clobbered the Rockies in a “best of seven games” series. The Red Sox were best in all of the only four games that had to be played.
Finally, it’s worth noting that I find watching baseball to be incredibly boring. Not as boring as watching golf (how the hell can anyone watch golf?!), but pretty damn boring. That is, unless I physically attend a baseball game with friends. Then it’s a nice outdoor social event with a game of baseball going on in the background. You even have to stand up occasionally–it’s good exercise!
P.S. This was originally just going to be copies of my two tweets, but it kind of got away from me. Mashing seems to soothe my writing cravings.
P.P.S. “Sincostan” is the cleverest and only math joke I’ve ever written. Or noticed, that’s probably more appropriate. Come to think of it, Sincostan isn’t even really a joke. Unless you consider portmanteaus to be jokes. Which I know you don’t. It’s okay, my feelings aren’t hurt.
P.P.P.S. Huh. I don’t have a dedicated “Sports” category. I wonder why that’s never come up before. I don’t have one for “Math” either. Weird.
Review of Yesterday’s Regrettable Mistakes
1) The Senate rejected a bill popular among 90% of Americans that would’ve strengthened background checks on gun purchases.
2) Several news outlets incorrectly announced that a dark skinned man was identified as a suspect in the Boston bombings.
3) Meteorology’s classification as a science was called into question yet again in Colorado.
The difference is that meteorologists are tasked with the difficult job of predicting the future. The Congress and the news media are supposed to work with facts that exist in the present. Let’s do better today. Go team!
Trivia, Perspective, and My Most Hated Of All Organs
YEAH SURE, it was great that, on Tuesday, I participated in trivia, despite being absolutely overwhelmingly exhausted (more on this later). And anyway, it’s a responsibility I owe to my teammates! Well… no, it’s probably not, and none of them would ever hold me to anything like that. But I do enjoy (and sort of rely on) playing every week to bust up the ongoing tedium of getting well.
YEAH SURE, it was great that, on Tuesday, our team achieved its highest trivia score ever, even if you choose not to count all those bonus points from that round with all those bonus points. We had great team unity, in which everyone contributed, which is always the best. Well… except, of course, when one teammate has a particularly unfortunate off night, which the rest of us don’t seem to notice. A night in which one person continually contributes just absolutely, incredibly incorrect answers and the others, highlighting not only our propensity to never give up on our teammates, but also some occasional bad decision making, support those very, very bad answers. It’s safe to say we’ve all been that incessantly wrong, yet unwittingly convincing person on more than a few nights who begs, “please don’t listen to me anymore,” only to have the team respond, “no, no–that sounds right!”
YEAH SURE, it was great that, on Tuesday, after a well fought comeback from third place and a very competitive finale, we finished in a very respectable second place, a mere point behind our most vile nemeses/best buddies, the REDS!. Yeah, the very same despicable/honorable team that used to be known simply as the “REDS.” Make no mistake, though, even with the addition of an exclamation point to the end of their simple-seeming teamname, they’re still the same old terrible, horrible, nice, and friendly jerks/class acts they’ve always been. We’ve placed ahead of them plenty of times, but to be honest (implying, perhaps, that I may normally be dishonest?), they’re just more consistant than we are.
HOWEVER, there was one deeply disturbing act I haven’t been able to move past. Something I don’t know that I will ever be able to let go. There was a question that, for whatever unimportant reason, we answered incorrectly. That’s fine, it happens all the time. But this particular wrong answer was different from all others. Ever. In the whole world, in the entire history of people answering obscure questions so they can feel smugly superior to all of their friends (I imagine there was that one smarty pants caveman amongst all our cave dwelling ancestors who must have felt particularly smug, as relatively everything was obscure back then)(also, no one liked him). This answer doesn’t bother me because of some poorly worded question or because of any hard feelings or because of an accidental oversight or anything like that. No, this wrong answer, in itself, will always haunt me.
The round’s topic was “anatomy and the human body.” For the protection of our team pride, I won’t go into the exact details of the question. Suffice it to say, we were supposed to name a specific organ. Without completely processing the wrong answer through my sensory organs, without taking much note of why the answer might be wrong in my thinking organ, and without raising any sort of protest about the answer with my bellyaching organs, I let it slip past me. My most hated of all organs. That dastardly concocter of hormones like insulin and glucagon. That unseemly pusher of digestive enzymes like amylase and lipase. That cowardly, backstabbing “when the tough gets going, I’ll digest myself and destroy all these other important organs while I’m at it” organ. That’s right, the pancreas!
GRAAAAARGH! I HATE THE PANCREAS!!! Or mine, at least. I don’t really have anything specific against yours. Your pancreas might be perfectly lovely, for all I know. Based on personal experience, I highly doubt that it is, but hey, who knows? I apologize if I’ve offended you or your pancreas. Just know that they are all great deceivers, every last one of them, and cannot not be trusted. Talk about a bellyache.
It’s not that I’ve had any new pancreatic problems about which I’ve not written over the past year. In fact, my pancreas seems to have given up its old, villainous ways. Notice I qualified (and italicised) that statement, because I will never stop suspecting my pancreas of plotting against me. I must remain ever vigilant with that thing still hanging around, secreting its merry heart out in there.
Even though its last attack on me was over three years ago and even though its worst, most
bile vile, heinous act of attempted murder was well over four years ago, the effects of what it did are still very much a part of my life. Not only physically, in the form of my Dalíesque insides, but also in what has been clear for years now: had my pancreas not hemorrhaged, my life would not be ruled by “getting better.” But it is, and so it goes. Each individual problem spawned from my hemorrhagic pancreatitis in early 2008–from re-learning once and then re-learning again how to walk, to spending years getting off certain medications–has been, or in many cases, is still being addressed.
I’ve come to some kind of terms with that. Which is good, because for a long time, I was at total and complete odds with that entirely unchangeable fact. I wasted a lot of energy trying to fight something that I really couldn’t get around.
For many years into chemo, I pictured my life pre-cancer as a single, taught red string connected snugly and cleanly from one end of my life to the other. When cancer and its many complications came along, that red string was unceremoniously cut somewhere between its begining and its end, leaving both sides to drift slowly apart, slowly downward. I pictured these difficult years as an entirely different length of chord–something rougher, less whole, like a length of naturally scratchy twine. One day, I would finally find both of the now dangling ends of that original fine, red string. But, try as I might, I could not reconnect the two parts of the red string, as it had been exactly the right size to stretch from one end of my life to the other. The two cut ends would touch, but there would be no extra length with which to tie them back together.
And so I would knot the beginning of the length of twine to the end of the first stretch of red string, and I would knot the end of the length of twine to the beginning of the other stretch of red string. Thus, I would bridge the original, beautiful red string together with this crude yarn. My “real life,” that red string, and my “cancer/chemo/recovery life” away from it, the coarse twine, entirely different, entirely separate.
But there is no twine; it’s all the same red string. It was around April that I stopped thinking of the years I’ve been spending here as my life on “pause,” or some sort of alternate reality I had been fighting my way back from, trying to escape back to my life. This difficult patch is just as much a part of my life as any other part has been. It’s just been something I was forced into, instead of something I chose or to which I was complicit. Understanding this has made a huge change in my life.
I don’t mean to suggest that I’ve been able to look at these years as happy or good (although there have been a few positives). Given the option, I never, ever would have chosen this path. It sucks. It’s crappy. Cancer imposed itself upon my life and I hate it for doing so. It caused so much damage and it took so much from me, including over half of what should have been my most formative years, my twenties.
But fighting against it, rather than accepting it, serves only to create more misery. I had limited myself in so many ways, because I thought only in terms of “getting back to my life.” I withheld things, relationships, feelings from my life, telling myself there would be plenty of time for those when I got back to my life. Having since realized there is not a life to get back to, rather, that this is my life, I’ve been able to indulge in thoughts and feelings and experiences I had fully pushed away.
Again, I don’t mean to imply that everything is sunshine and roses now. I’m way, way past being ready to be done with all of this. And it’s hard finding out, what feels like every time I complete some part of this process of getting well, that there’s another whole component I didn’t realize was there, but that I must now take on. And as good as I’ve felt at some points over the past year, as much ground as I continue to gain, as wonderful the progress I’ve made has been, I’m still not well, goddamn it.
There was a day in May, right around my one year anniversary off chemo, when I woke up and felt like myself again. I felt like a human being. I’d heard from survivors and doctors that a day like that would eventually come around. Every time I heard that, I thought bullshit, to myself, there’s no possible way I’ll go to bed one night and wake up the next morning feeling how I used to feel. It’s a very long process. And while it is a long process, that fact, for whatever reason, did not stop there from being that day I woke up and felt like myself–my pre-cancer self–again. It was glorious. I went out and did all sorts of things I hadn’t done in years. It lasted for days, but it did eventually wane away. There have been many days since then that I’ve felt like I remember feeling before all of this began. And each one has been a gift.
There have been a lot of days since then, though, that I’ve been discouraged. As I’m still not well, I’ve had bad days. I’ve had lots of them. And, maybe, the fact that I’ve tasted what it’s like to feel so much better has made it all that much easier to get discouraged. I’m not fighting the process–I need to get well. I need to do this now. I don’t have any question in my head about that. But I can’t help wondering when all this will be over, I can’t help worrying when I don’t feel well that it’s going to be that much longer. I never stop moving towards the finish line–sometimes sprinting, sometimes crawling–but I still don’t know where the finish line is.
Up top, I mentioned that I’ve been overwhelmingly exhausted. It’s discouraging. It feels like watching a bad repeat for the umpteenth time, just because nothing else is on and there’s nothing else to do. My sleep was bad, and I understood why I was tired. But then my sleep got better, and I’ve continued to feel not only exhausted and discouraged, but powerless and confused. I’m going with the tide, I’m not fighting against it, but when will I hit land?
It’s not all bad. It’s very important that I say that. But it is hard. Like I said, I never would’ve chosen this, I was pushed into this. I’ve learned a lot about myself and how I view the world. I’ve gained amazing perspective that I know I would not have otherwise been able to, maybe not even over the course of a lifetime. I love what I’ve gained. But I don’t want to be so overwhelmingly tired that I have to cancel plans, that I have to throw myself into bed between doctor’s appointments, that doing the things I want to be doing puts me out of commission for weeks.
This exhaustion has played a huge part in my lack of writing. I began writing this entry on Tuesday night, and am now finishing it on Sunday afternoon. This exhaustion has kept me from what I want to be doing. But, despite it, I’m still moving towards that finish line. I may be crawling right now, but I know I’ll be back on my feet, sprinting again soon.
The Twisted Murder Of Civil Unions
Last week, Colorado’s civil unions bill was put into a legislatively-induced coma. Today, it was flat out murdered.
Civil unions are supported by a majority of Coloradans. The civil unions bill passed through three different Republican-controlled committees. It passed through the Democratically-controlled Senate. Democratic Governor John Hickenlooper enthusiastically promised to sign it. It had enough bipartisan support in the Republican-controlled House of Representatives to pass. The bill seemed well on its way to becoming a law. Except the House didn’t pass it–they were never even allowed to vote on it.
Last week, a group of Republicans ensured the bill would not be put up for a vote, running down the clock on their legislative session before it could be voted upon. Republican House Speaker Frank McNulty explained, “the timing is such that we’re simply not able to work through that impasse.”
However, when given time by Democratic Governor John Hickenlooper today in the form of a special legislative session, instead of working through any impasse, Mr. McNulty simply killed the bill. He referred the bill to a Republican-controlled “kill committee,” the House State Veterans and Military Affairs Committee. This fourth committee had nothing to do with the bill, whatsoever. It was simply made up of enough Republicans willing to oppose it, so as to ensure that the House would never get to vote on it.
Cheating those that disagree with you of their right to vote is simply undemocratic. It is un-American. In this case, it has been employed as a tactic by an ever decreasing minority that considers itself so righteous that it can ignore the will of the people. At best, this will be seen as an embarrassing and shameful delay in the inevitable granting of equal rights to all Coloradans.
History will not be kind to you and your comrades, Mr. Speaker.
Another Premeditated Killing Of Civil Unions In Colorado; A Crisis In Democracy
Due to a commendable number of Republicans in our House of Representatives, Colorado finally had enough legislative votes to pass a civil unions bill. The bill passed through the Senate, passed through the necessary committees, despite some difficulties, and it had the support of the Governor, who had pledged to sign it. All of this accurately represented a recent poll that suggests as many as two-thirds of all Coloradans support same-sex civil unions.
Last week, while listening to the legislative debate, I was amused that many of those debating on behalf of the civil unions bill and many debating against it shared the same argument: “it will lead to gay marriage.” Although there is no bill about it currently making its way through the legislature, marriage equality also has strong support among Coloradans. It is one of my greatest desires that there be marriage equality–the right of any loving couple to marry, regardless of their gender–in my beloved state (and my beloved country, for that matter). However, I have come to recognize the reality that, often times, even the most important things in life move forward with frustratingly tiny steps. This bill wasn’t quite a leap, but it was a good stride.
Yet, a stride that will not be taken, despite all of its popular support. Colorado will continue to withhold a basic human right from homosexual couples, yet again, because of a handfull of Representatives.
In any likely scenario, the civil unions bill wasn’t expected to be around for long. In the first scenario, the bill would pass through the House and be signed by the Governor, whereupon it would break free of its legislative cocoon and blossom into a beautiful law. In the other scenario, the bill would not be voted upon in the House by Midnight MDT, Tuesday night, and it would simply die. The latter scenario won out as Republicans in control the House of Representatives spent Tuesday filibustering, ensuring that the bill would not be put to a vote. When this tactic seemed as if it might falter, they used their grossest and most forthright machination to make sure the clock on civil unions would run out: they called a two-hour recess at 9:16 PM.
Throughout this great nation, we are facing a crisis that is chipping away at the very foundation of democracy: groups of citizens being prevented from voting because someone in power doesn’t like what those votes would be. These Republican Representatives prevented any vote on the civil unions bill because they personally disagree with what they knew the outcome of the vote would have been, because they personally disagree with a majority of Representatives in the House, including several Republicans standing on the proper side of history, and because they personally disagree with a majority of Coloradans, who they were elected to represent.
In title they are called such, but in action, are these people truly “Representatives?”
I’m proud to be a Coloradan, and I believe this is one of the greatest states in the Union. But this night in Colorado, when looked back upon through the lens of history, will be seen as nothing short of embarrassing. An embarrassing misstep in Colorado’s democratic process and an embarrassing insight into the lengths that some Coloradans will go to in order to continue mistreating one another.
Four Years Alive.
On the evening of Thursday, December 6, 2007, my mom was driving me home from The Children’s Hospital in Aurora, Colorado. We were discouraged. The whole reason for my flight home had been to get checked out at Children’s by Dr. Glancy’s successor. But I hadn’t fit into the pediatric MRI machine because my shoulders were too wide. They had been able to draw my blood, but that was more of a formality, and very unlikely to tell us anything. Tomorrow, we’d find an adult MRI machine, get me imaged, and hopefully get me into the doctor. It was so frustrating, having come all this way to be seen today, only to be delayed. Especially because we knew the problem: the reoccurring nonspecific benign lesion in the bone of my upper right arm was back again.
For months, I had been trying to get doctors in New York City to x-ray it, to diagnose it, and to treat it, but every orthopedist I went to see thought it sounded too much like cancer. I kept explaining that I had had this thing in my the same exact spot in my right humerus before, and that my orthopedist back home had removed it three times before. During each of the surgeries, pathology had been run on what was taken out of my bone, and each time, it was pretty inconclusive. But one thing had been absolutely certain each time: it was not cancer.
The first operation had been when I was twelve. I had shattered my arm playing basketball. Not because I ran into someone or because I twisted my arm in a weird way while shooting the ball. Evan had lightly tossed me the ball from a few feet away, and that light force had been strong enough to create multiple hairline fractures in my arm. It turned out there was this lesion in my humerus that had been growing from within the marrow, outward, eating the bone until it was paper thin. I remember feeling pain in it years before that, when I was even younger; once when I was reaching for something under a cabinet, and another time when I stretched my arm way over my head. Looking through old x-rays in which my right humerus happened to appear, it looked like the lesion had been growing there for a long time. Or at least as long as my humerus had been sneaking into x-rays of other things like my lungs and my elbow.
I was twelve at the time, in the seventh grade. I went to the Children’s Hospital, and was seen by the head of orthopedics at the time, the great Dr. Gerard Glancy. He ended up operating on that same unspecified, non-cancerous lesion three times: that first time, when I was twelve, then when I was fourteen, and again when I was nineteen. Each time, this thing, whatever it was, had been definitively referred to as “dead.” It was not an active infection of any type, and it definitely wasn’t cancerous. But it kept coming back. It was confusing to everyone involved: to Dr. Glancy, to the pathologists, to my family, and to me. But I guess eventually we just came to accept it as that weird thing I had.
The orthopedists I visited in New York City did not see it that way. To them, my tale was dubious, at best. It sounded like cancer to them. I tried to explain, it wasn’t cancer–it definitely wasn’t cancer–it was an unspecified benign bone lesion, and if they’d just cut it out, I’d really appreciate it. But they didn’t even want to look at it, they didn’t want to x-ray it, they didn’t want to examine me. I was frustrated and upset and tired. I had been trying to deal with this thing since around my birthday at the end of July. Months went by, and the pain in my arm became so intense that it was keeping me awake at night. That pain and lack of sleep, in turn made me constantly fatigued and sore all over.
Early on, I had found myself a new primary care doctor, as my old one had moved out of town since I had last needed to visit him. I think I picked her because her office was within walking distance of my apartment and when I Googled her name, there were no negative reviews on the first page that came up. She always seemed very keen on helping me get well, but she herself very rarely diagnosed or treated any of my problems. It was on her recommendation that I visited many of the orthopedists who tossed me out. To her credit, she did send me to get the only x-ray taken of arm during this entire debacle, though, to her detriment, it was, for some reason, taken at a shady lab, where no one checked to make sure it was useful. Those few doctors that actually agreed to look at the image thought it was too dark and blurry to determine anything. As I was repeatedly turned away from doctors who didn’t want to so much as take the responsibility of even suggesting a different course of action to get help with my arm, my primary care doctor was finally able to treat me for something that had likely come about due to the stress and anxiety of trying to deal with everything: two long bouts with pneumonia.
Just after Thanksgiving, my dad flew Better Than The Machine to Colorado to perform at his 50th birthday party. For the first time in my life, the altitude got to me. I had been away for longer than I’d ever been away before. That made me sad, because I always made fun of people who couldn’t handle the altitude. Just tremendous amounts of fun. Take that, you sea-level dwellers! But now, here I was, exhausted and hurting. My arm was no help. I was trying to drive the group around in a mini-van, but had to turn them over to my sisters a few times because I was so sore. We had a great performance at my dad’s party, but for the first time ever, I had trouble singing “Give A Shit,” our big musical finale. My voice cracked and squeezed, which pissed me off for the rest of the night. I’d sang my heart out to crowds who wanted to rush us off stage before, but I couldn’t sing in front of my dad’s friends. After several days, I returned to New York with the rest of the group.
My arm only got worse. I didn’t really know what to do. One night, I finally walked over to the ER at Columbia Hospital and waited for 9 hours to be examined. The doctor told me to go home and take two Tylenol. I walked outside and called my mom. She told me she had talked to Dr. Glancy and had sent him a copy of the dark, blurry x-ray my doctor had taken. Although he wasn’t actively seeing patients anymore because he was in the process of retiring, Dr. Glancy took a look at the x-ray and thought it looked a bit suspicious. He had been able to see all tiny fractures in my arm when it had first broken all those years ago, and once again, he seemed to be the only one who could see something wrong now. He told my mom that if she flew me home, he’d see to it that someone with a full understanding of our background together would see me as soon as I got into town. It was a very nice offer, and it was tempting, but it seemed sort of ridiculous. I had only been back in New York for a few days–there had to be an easier way of dealing with this than flying back across the country.
The next day, I went with Amy to visit her dad Rick at his office next to Grand Central. We would go by and pick things up from time to time, though less so since we had moved up to Sugar Hill. Amy had been at the ER with me the night before. She sat with me for several hours, until it became apparent that my case was very low on the totem pole. I had told her to go home, because it was getting late and she had work in the morning. I told Rick about this latest futile development in my months long saga and he shook his head. Amy and her family were always very supportive of me. And I always felt like Rick was a guy I could count on to tell it to me straight. He looked at me, and looked at Amy, and he looked down. Very respectfully, very fatherly, sad for me about what I’d had to go through, he said, “Man, this is really bumming me out.”
We left Rick’s office, I called my mom, and told her I needed her to fly me home.
As my mom and I continued home down the highway through rush hour traffic, discussing the problems with the tiny MRI machine at Children’s, my mom’s antiquated cellular telephone rang. I assumed it was my dad, calling to see if we wanted him to pick up something for dinner. I answered, and an unfamiliar voice, with a cowboy twang greeted me.
“Hello?” the voice asked, “Is this Laure Levin’s phone? Is this Reid?”
“Uh, yeah, yes it is,” I said, shrugging at my mom.
“Reid, this is Dr. Travis Heare, from orthopedics. Dr. Glancy–”
“Oh, hello, Doctor!” I responded, enthusiastically, “You heard about the MRI today? I guess my folks talked to you and they said we could coordinate something tomorrow. I’m looking forward to meeting you–”
“Reid,” he interrupted, stern but not unkind. He spoke slowly, slower than his drawl should have caused, “Reid, I’m sorry we haven’t met, and I don’t usually make these sort of phone calls, but we’ve been trying to track you down, and we found this number.”
“Are you at home?”
“Are you going home? On your way?”
“Uhm, well yeah, we were at the hospital for a long time trying to get me into the MRI.”
“I’m going to need you to turn around and come back to the hospital. Are you driving the car? You might want to pull off the road.”
“Yeah, yes–but I’m not driving,” the moment I said this, my mom grew very concerned.
“Okay, well, would you like me to wait a minute?”
I pulled the phone away from my mouth for seconds that I felt I couldn’t spare, I looked at the highway for a minute, I saw no good place to pull over, I looked at my mom, who was looking at the road and at me, I looked back at the road and I said to her, “Pull off at the next exit.” I think she asked why, and I think I just repeated that she needed to pull off.
“No,” I said into the phone, “what’s going on?”
“Reid, you have leukemia,” he said some other things, and I couldn’t hear him. I told my mom to pull the car over, and she was so worried. But I wouldn’t tell her until the car was stopped. I didn’t know how she would react. I didn’t know how I would react, saying those words, seeing what it did to her.
My gaze was locked straight in front of me. Leukemia? “You’ve got to stop the car.”
“I’m looking for a place, there’s nowhere to stop, please just tell me what’s going on!” She was frantic, concerned. She knew something was very wrong. We had pulled off the highway, but were stuck in a sweeping mass of cars going through green lights, forced to turn, nowhere to exit, nowhere to pull off.
Not leukemia, god not leukemia! “Mom, stop the car!” She was tearing up, and so was I.
Dr. Heare was still talking. I interrupted whatever he was saying, “Is there any chance it’s wrong?” No, one of the blood tests I had taken earlier today was irrefutable, the numbers were off the charts. And I was putting myself in serious danger if I did not return to the hospital immediately.
The car came to a halt in a parking lot. “Mom, I have leukemia.” What the hell is leukemia?
* * *
Yesterday, December 6, marked the fourth anniversary of the day I was diagnosed with pre-B cell acute lymphoblastic leukemia. Although several family members saw reason to celebrate this day during the past couple years, I never felt any good reason to give the day much special recognition. After all, it was the day I found out I had cancer, the day my life was irrevocably changed for the worse, diverted suddenly from the course I’d long been charting to one that wasn’t on any map I’d ever seen or heard of. It was a terrible day, as far as I was concerned.
It’s always seemed like there are so many happier and more meaningful days whose anniversaries we could choose to celebrate. For instance, the day my leukemia went into remission. Or the day I was released from the hospital following all those long months of rehabilitation after nearly dying from hemorrhagic pancreatitis. Or the day I finished cranial radiation. And I looked forward to being able to celebrate the day I finished chemotherapy for years, probably starting just about the moment I received my first chemotherapy infusion. And the truth of the matter is, there’s no reason I can’t celebrate all these things, not to mention many other accomplishments and benchmarks, big and small, achieved and yet-to-be-achieved along the very long and difficult journey of beating leukemia, finishing chemo, and recovering from all of it.
But after four years, I finally understand why December 6, 2007 is so special and what it means to me. It wasn’t the day the problem started, it was the day the problem started to be fixed. It was the day I was given an answer I may not have liked, but it was the answer to the question I had been seeking endlessly for months. And on that day, so many small events and decisions, both in and out of my control, from so many years of my being, came together in a grand confluence that saved my life.
We had finished speaking to Dr. Heare on the phone. We drove back to the hospital and I called my dad and Amy to tell them the troubling news. My mom and my dad and I reentered Children’s that night, dumbstruck. We were met by an oncologist named Dr. Meg Macy, who explained to us exactly what acute lymphoblastic leukemia was: a cancer of the white blood cells that compromises both the immune and circulatory systems. She explained why Children’s–this place I’d ended up because of a long story that began with me playing basketball when I was 12 years old–was the best place for me to be treated for this pediatric cancer. And she explained that my white blood cell count was extraordinarily high–there were hundreds of thousands of the compromised white cells per microliter–putting me at such extremely high risk that there had been a massive effort to make sure I didn’t get home before they got me back to the hospital. The oncologists did not believe even a night could be spared.
If I hadn’t flown in that day, and hadn’t gone straight to Children’s, and hadn’t got my blood tested, and hadn’t had a phone Dr. Heare was able to find the number to, and hadn’t gone straight back to the hospital, it’s quite possible none of those other days I considered to be more happy and meaningful would have ever existed to be celebrated.
That’s part of why December 6 is important. The other part is that, on that night, in the ER at Children’s, my parents and I were joined by close family and friends, who all lent their support. Those who couldn’t be there in person talked to us on the phone. This group only grew as the days and weeks and months passed. I owe the fact that I’m still alive to many, many wonderful people. Too many people to list, and certainly more than I’m even aware of. Their involvement, from well-wishes to visiting me in the hospital to praying for us to sitting with my parents and talking to sending cards to bringing food for the family to keeping me in their thoughts, and all the other infinite ways people supported my family and me, it all stemmed from that day.
They saw me, a small sapling in a hailstorm, and they quickly began planting themselves around me, connecting their root systems to mine, helping my roots to grow strong and robust and to be able to dig deep into the ground. And others heard through any number of means what had happened, and this group branched out and formed beautiful green leaves. From those branches grew many more branches and lots of small twigs, each with its own unique leaves, each feeding into a system that collected energy, strength, and will for me. A gigantic tree of life, planted on a day of sadness, that I will pay respect to and celebrate for the rest of my life.
* * *
This is a comic I happened to read yesterday. It’s from one of my favorite ongoing webcomics, xkcd. It seemed appropriate, if not eerie and entirely improbable that I should have discovered it yesterday. Click on the image for a larger version if you can’t make out all of the words. Or, even if you can read all the words, I still highly recommend clicking anyway and checking out more xkcd (it’s a webcomic of romance, sarcasm, math, and language–it’s got something for everyone).
I’m Having Surgery Tomorrow (Friday); also, I’ve Been Getting HBO For Two Weeks
Last Monday (Columbus Day: freedom, hope, genocide!), I began undergoing daily two-hour hyperbaric oxygen (HBO) therapy sessions at Presbyterian/St. Luke’s Hospital in Denver. This entails spending two hours in a big, metallic tube called a hyperbaric chamber. It may or may not be a submarine that may or may not have crashed into the second floor of the hospital. Judge for yourself.
It doesn’t actually look as white and plasticky as it does in this picture. In person, it looks more metally. It’s probably made of those metals that only look like a metallic submarine in person, and then when someone snaps a picture of it, the metals react and look like they’re part of an Apple Store. Wow, that’s pretty high tech, covert stuff.
The basic theory behind HBO therapy is that if you smush a whole bunch of oxygen into a patient’s red blood cells, those overloaded cells will take the oxygen to places that normally doesn’t get enough oxygen. To accomplish this smushing, hyperbaric chambers create high pressure environments comparable to being under different depths of water, and the patients inside wear oxygen hoods (which should really be called 1950’s spacemen helmets, because that’s what they look like) or oxygen masks (I use one of these) that deliver 100% oxygen. The pressure forces the oxygen into the red blood cells. In practice, I’ve been the youngest person by at least five decades, in a group with only males, all interestingly with radiation burns from cancer, all really nice guys. We go “down” 45 feet “underwater” (at altitude) for two hours, during which time I am happy because no one is bothering me. I normally close my eyes and just enjoy my inner thoughts as my red blood cells are smushed silly.
Supposedly, according to the official Presbyterian/St. Luke’s HBO webpage, some “simple laws of physics and chemistry” are behind the healing powers of the whole thing, which sounds right, but hell if I know. Actually, if you’re interested, that goes into more depth than I can. The term “simple laws of physics and chemistry” just makes me scoff. Scoff uncontrollably.
“So, why the hell have you been doing HBO treatments, Reid?” you ask. Or, alternately, a voice written in the second person to represent what you should have thought to ask asked. Although, if you thought of everything but the word “hell,” because cursing isn’t really your thing, that’s okay. Anyway, I think your lack of foresight has knocked me off track here.
Oh right, why the hell I’ve been doing HBO treatments: To get blood flowing to the ulcerated radiation burn on my back. And I’m doing that so that tomorrow (Friday), when a surgeon cuts into my radiation burn and the surrounding tissue, there will hopefully be some good blood flow at the site. And that’s happening to finally get rid of my radiation burn once and for all. For nearly four years, this thing has caused me nothing but pain, grief, and the nearly unbearable ongoing ache of un-itched itchiness.
At first, it was almost intolerably painful. It was mistreated over and over and over, but it still managed to keep healing even while I was on chemotherapy. In a lot of ways, it is something I came to terms with, something I simply grew used to. In other, more medical ways, it’s still a big hole in my lower back with the tip of one of my vertebra sticking out of it. As well as it healed in the past under bad circumstances, it is almost certainly impossible that it will ever heal fully without surgery. In trying to heal this immense wound, my body grew new, healthy skin over old dead, radiated tissue. Between the bad tissue, and the aforementioned vertebra poking out, it’s like trying to grow a flower in dirt with no water or sun or dirt.
The surgeon will basically be removing all the bad stuff. He’ll be taking out bad tissue until he hits good tissue (with good blood flow, this should be easy to identity) and with that nubby vertebra, he’ll just be nipping the tip. He thinks he’ll be able to use surrounding skin to seal the whole thing up. He thinks I’ll be out for two hours, that I’ll be in the hospital overnight, and that I’ll recover in a couple of weeks. I’m keeping somewhat more conservative projections in my head, based on my past few years of experience. That said, this surgeon specializes in reconstructing breast cancer victims’ breasts disfigured by radiation, and that’s about the closest specialization I’m going to find to a lower back disfiguration due to the overexposure to fluoroscopy radiation surgeon.
The day after my surgery, I will be wheeled down, on my gurney, into the hyperbaric chamber. The process of HBO therapy will begin to help my back heal again–but this time, permanantly.
P.S. Oy. There are still 15 other things I have to tell you about that lie ahead of me before I am “recovered.” I’ll get to those. I promise. Among them is a big reason I haven’t been posting much: exhaustion.