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.
A Week In Lengthy Brief Summary, part one
I don’t feel well today. In fact, I have not felt well since last Wednesday. I’ve been kicked around by debilitating headaches and nausea. Also, since last Sunday, I’ve been more sleepy than I’ve been in a couple of months. From the beginning of July through the end of it, my health was going up a steep incline like it was an expert climber, which it is not. I was shocked each and every day because of how much better I was finally feeling. Each day was a milestone of noticeable improvement since finishing chemo. Hell, I even got sick for a day here or there in July, but I didn’t mind it because it was just a day here or there, and being sick for just one day hadn’t happened to me in years–it was actually a good feeling!
Last Monday, when I was very sleepy, I tried to write a blog entry, and I fell asleep in the middle of writing it. On Tuesday, I set out to complete what I’d written about Monday and then write about Tuesday. I fell asleep again. One Wednesday, I set out to finish Monday and Tuesday and write about Wednesday. This went on until yesterday. I have a 5001 word mega-blog entry (or small book) that’s still not done. It’s pretty absurd.
I may publish some parts out of that behemoth in the future, but for now, here’s a (relatively) quick run-down of the past week:
Monday (August 1) was a 5. I went to the Rockies game as a guest of the Reimans. David had to break into my house to roust me because I was asleep when his family came by to pick me up. And when they left. And when he returned in a different car by himself. Due to this, I did not scold, rag on, or punch him for rooting for the other team, the Phillies. I had a great time.
Tuesday was a 4. My mom and I played trivia at The DTC Tavern with the Reimans. We had to split into two teams because of the new rules. The TVs where the questions should have been did not work. Many of the regular teams weren’t there, and even our regular waitress, of whom we’re very fond, told us the new rules were drying up her tips. It was both fun and painful. As a general rule, I normally prefer my fun without any pain mixed in. In the end, we made out like bandits (trivia bandits) because David, Becca, Mom, and I came in first and won $60 towards our bill, and the others came in second and won $40 off their bill. Since we were there as one group and paid as one group, we got $100 off our bill. If we had played as one team, we would have won less money… good work, The Tavern!
Wednesday was a 3. My folks went to Vail. I stayed behind, with a plan for joining them the next day. I decided I’d take advantage of my free Wednesday and “get stuff done!” This did not work out well. I couldn’t hold my eyes open, so I slept some, then I started feeling lousy, so I laid down on the sofa and tried to watch some TV. I was depressed that I’d not gone up to Vail, hadn’t gotten anything done, and felt physically unable to do anything. A late visit from Reiman saved the day from being a 2.
Thursday was a 3. On Wednesday, my cousin Adam, his pregnant wife Amy, and their jewel-of-everyone’s eye daughter, Noa, drove from the mountain, near Las Vegas, on top of which they’ve lived for two years, to Vail. Adam was headed down to Denver on Thursday for the last part of an applications process to become a firefighter in Denver (so as to move the family back here): an interview with the West Metro Fire Department. On previous trips to Denver, he’d passed the written test with flying colors and aced the physical test. The plan for the day was that he would kick ass at his interview, swing by and pick me up, and we’d go join everyone in Vail.
Instead, everyone left Vail and came to our house. I told my parents I wasn’t feeling well, and they decided they weren’t comfortable leaving me alone. I protested and was whole-heartedly against them coming home, but I do appreciate the reasons they made the decisions they did. Also, I couldn’t really be mad, because this gave an opportunity to spend some time with my wonderful cousins! Their arrival saved this day from being a 2.
Friday was a 4. I slept a lot. When I wasn’t sleeping, I talked to Adam and Amy and talked and played with Noa. She and I get along very well, which might say something about her maturity at age three, or my lack of maturity at age 28. I find that it’s fun just to be around her. Everything familiar to me is new and wondrous to her. And “why?” is asked of almost everything I say. There’s also the added bonus of not being her parent, so there’s very little she can find to disagree with me about.
Saturday was a 4. Largely the same as Friday: I slept a lot, played with Noa, and got to spend more time with Adam and Amy. I really wish I had been feeling well during their visit. I love having them around. I’ve often stated how lucky I am to have such a great immediate family, but I am also very lucky to have grown up with so many great cousins, as well. Not to mention my cousins we’ve gained through marriage, Amy and Ivan, who both seem like natural, obvious parts of our family. We’re family, we’re friends, and I find we’re all quite happy to be around one another.
Sunday was a 4. Again, I slept most of the day. Those family members from my mom’s side of the family that were in town came to a hot dog dinner at our house. The stand-out moment of the weekend for me occurred while when the family was seated at the table, everyone was having their own conversation, and Noa turned to me and asked, “Rrrrreeeeid, why doesn’t she have a boyfriend?” as she pointed in the general direction of a female family member at the table.
“Because she hasn’t found the right boy to be her boyfriend yet,” I replied.
“Why?” she asked.
“You don’t want just any boy, and the right one can be very hard to find.”
Noa crinkled her nose and thought about this. I’m not entirely sure this was a satisfactory answer for her, but she moved on anyway, to what was surely a better and more pertinent question, “Do you have a boyfriend?” she asked me.
The table went silent. Heads turned. It was great.
“No, I don’t,” I shrugged.
“Do boys not have boyfriends?”
I loved this question. I loved answering this question. I loved the hesitation apparent in some of the throats at the table. “Some boys have boyfriends.”
“Oh. Why don’t you?” she asked innocently.
“Because I want a girlfriend.”
“Hmmm.” She furrowed her brow and looked away from me as she considered that. She quickly moved on, “Why don’t you have a girlfriend?”
It went on like this for some time. It was great.
* * *
All right. I think that’s it. While I intended to include Monday and Tuesday in this summary, I am in a lot of pain and, hey, I can always do those another day. Or not. I’m off to feel better. I gots me some things to do.
Friends In Alignment
Saturday was a 6. Yeah, that’s right. 6/5.
I don’t know about this number day ranking system. I feel like people reading my blog like it better than I do. Don’t worry, I’ll think of something to mend the rift between me and numbers. Oh, and the 6 is not due to me thinking the number system is inadequate–if the numbers went up to 10, this day would be an 11.
Two of my oldest best friends in the entire world (“world” is used here as it’s used in the “World Series,” in that it’s not really the entire world, just the parts I care about), Jason and Reiman, who now live in some other states someplace else somewhere, were both in town on the same day. Neither had any foreknowledge that the other was coming into town, nor that both were staying for a week, one right after the other. By chance, they had one overlapping free day–this was the day I’d been waiting for to celebrate my 28th birthday (again) in a big way.
The coincidence that they were both here on the same day was a lot like an alignment of planets. Planets, which cannot think or change the speed at which they orbit the Sun, cannot speak to one another before aligning, nor can they align for very long. Perhaps this makes such an alignment even more special; a rare moment that is something to be appreciated and remembered. Or, alternately, maybe my buddies just need to coordinate with each other better when they’re coming home. I don’t know, it could really be either of those.
Anyway, it was a great day/night/early morning. Honestly, I can best describe what we did as “palling around.” Where we were and what we didn’t wasn’t nearly as important as who we were with.
Oh, and I’m not just saying that to cover up some sort of illicit activities in which we may or may not have been involved. Because we definitely did not rob any banks. So just let it go, okay? Just let it go already. Jeez.
Eventually, we met up with another of our close friends, Matt Sullivan of the Matt & Coreycondo Sullivans. The Sullivans live to the southwest, far beyond the Great Temple of Ikea (I think it’s Aztec). Together, the four of us saw a double feature of two movies we found very entertaining.
First, we saw “Captain America,” which exceeded my expectations. Not only was I entertained and impressed, but I’d say “Cap” could be in contention for the title of best Marvel Comics movie ever (hey Chris Evans, congrats on getting another chance at being in a good Marvel movie!) except that the end of the movie felt like a lead-in to another movie rather than the end of this movie. While someone might argue that this is okay because it is the lead-in for another movie, someone would be wrong. I give “Cap” 45/50 stars. I give the musical number 13/13 stripes.
Second, we saw “Cowboys & Aliens,” which all four of us enjoyed thoroughly. It delivered on its name, it was fun, and it was a great fit as the B movie of our double feature. I give “Cowboys & Aliens” 3/4 Indys for entertainment value, 22/22 Bonds for being the best movie about cowboys and aliens that will probably ever be made, and ∞/∞ motherfuckin’ snakes on this motherfuckin’ plane for being a movie that, before I die, I need to meet the person that greenlit it.
After the movies, Matt went home for no good reason other than it was midnight; he was tired; he had stuff to do in the morning; the theater was right by his house, and we were going far away in the other direction; and he wanted to take care of his wife Coreycondo, who wasn’t feeling good that night. Pfft, what a spoilsport.
Mattless, we proceeded to iHop. Oh, also Matt didn’t want to go to iHop because he eats people food. It was neat being back in our old high school late night truckstop hang out. We extended our day until 1:30 AM, at which point Reiman’s drooping eyelids frightened me since he had been our
getaway driver for our series of bank heists the whole day.
The 6/5 isn’t about any one thing we did. It’s about the feeling I get when I’m around my best friends: total and complete happiness.
* * *
Sunday was a 4. A pleasant, no to-do list, rest and recovery day.
-Although it sounded fun, I turned down an invitation from the Brothers Reiman to attend the Colorado Renaissance Festival. I had done a lot on Saturday, and even though I felt okay, I decided it would be better not to spend the entire day and evening walking around in 97° heat.
-I took a long nap.
-We watched a lot of TV. A few “Daily Shows,” a “White Collar,” and a “Warehouse 13.”
-I worked on this blog entry for a few hours. Writing these entries at the end of the day, which I see as necessary if I’m going to write about the whole day, keeps me up way too late. Eh, well… I don’t know if that’s true. I’d probably still be up now anyway. But these things do take me a very long time to write. Maybe I should write less? Start writing earlier? Write faster? No, I don’t think I can make myself write faster; I type fast and think… slower. I need to figure this out.
-But not tonight.
Turning 28 on the 28th: My First Chemoless Birthday In Four Years
Thursday was a 5. My golden birthday: my 28th birthday on July 28th. The first birthday I’ve celebrated while not on chemotherapy in four years. It was a long day, but it was a really good one.
I continued my strength training with my trainer at the gym. Although I’ve only been working out at the gym for two weeks, I’m already starting to feel the benefits. I walk out of there feeling really good, mentally and physically. I’ve got a lot of muscle to rebuild, and then it’ll be on to Beyond Rebuilding: Building Beyond Rebuilding! I also verified last week’s hunch as to why I was limping around the day after working out: working out at the gym is way harder than working out at home. Ow. I feel good. Ow. Really good. Argh.
I met my mom and my sister Rachel for lunch. Rachel flew in from DC just for my birthday! What a special thing to do; it meant a lot to me. She and Rebecca then left Friday morning for Las Vegas to celebrate Rachel’s 25th birthday with 13 friends. Rebecca set the whole thing up for Rachel. 3Rs: we’re very lucky to have each other. Also, we need official 3R power rings.
J and I went to Mile High Comics (my dad referred to this as “our own little Comic-Con”), which neither of us had been to in a whole bunch of years… many, many years. We both agreed, being the wise geeky continental travelers we are, that the old favorite store just doesn’t stack up against our favorite comic book stores in New York and Atlanta, respectively. Honestly, I don’t even really read comics anymore, except for Fables. And even then, I don’t read the individual issues, I buy the graphic novels that reprint 10 issue story arcs. Even then, I… no wait, that’s it. But I still felt like the old place was somehow less than I remember it being.
There was something really cool, though. This month, Marvel Comics made variant covers of Spider-man for comic book stores all over the country. Each cover has Spidey holding a copy of the Daily Bugle with the headline: Spider-man Saves [Comic Book Store Name] and that store’s logo. So now, thanks to J, I have an issue of Spider-man in which Spider-man apparently saves Mile High Comics! Which doesn’t actually happen inside the comic. But the cover is cool, because Mile High is the big Colorado comic chain, and we have hometown pride. Also, I forgot how dumb the Mile High Comics logo was. Captain Woodchuck? Why? Oh well, whatever. It’s still cool!
We had dinner at Piccolo’s, a local Italian & Mexican food restaurant. It’s delicious, and I’ve been eating it all my life. Mom, Dad, Rachel and I met Rebecca there. She brought me balloons, to officially certify that it was a real birthday celebration. Grandma, Gigi, Papa, Uncle Neal, Aunt Stacie, and my cousin Jeff were all there too, to help celebrate. Lots of pizza and spaghetti were consumed. We all talked and laughed and our goblets ranneth over with root beer and Shirley Temples and some sort of alcohol. As expected, Gigi yelled about the debt ceiling. An adorable proto-child stared at my balloons so longingly, and grabbed for them from twenty feet away with such might, that I had to go give him one. He immediately began ungratefully, yet so adorably, grabbing for the other balloons–he knew I was powerless against his adorableness. My sisters gave me some books I’ve been wanting. They (the books, not the sisters) have an added benefit beyond being full of information. Because they are so massive and so solid, after I’ve read them, I can use them as the cornerstones of a large building, or perhaps as anchors for an aircraft carrier. A good time was had by all.
I barely made it home without falling asleep. My parents insisted that before I would be allowed to go to sleep, I had to open my gifts from them. Tyrants! It turned out not to be so bad; I got more books I’ve been wanted and a cool electric shaver. For shaving! Some time ago, I tired of shaving my face with razor blades. To avoid this, I tried several things: I grew a beard, I brought scruffy back, and recently, I’ve been shaving my face with my electric beard trimmer. This new shaver is perfect, in that it will let me shave quickly, easily, and without the pain of being used on my skin when intended for trimming beards. Also, my parents helped pay for part of the cost of the graphic tablet I recently won in victorious battle against various local electronics stores.
I finally went to bed, expecting to collapse into a long, restorative sleep.
* * *
Friday was a 2.5. There’s not much to tell. Also, I might need more numbers to rate these days.
It turns out I forgot to take my pills before bed last night, and then I had a really terrible night. I don’t know if that was entirely due to not taking my pills, although I’m sure it played a role. I also overdid it yesterday. I felt cruddy and tired all day and couldn’t seem to fall asleep during the day, despite trying several times. I got a few things done here and there. I’ve been feeling noticeably better for awhile, so a day like this, while not a bad day, was certainly a frustrating one.
* * *
Saturday, there will be more partying. Of a different sort. I don’t quite know what sort yet, but it’ll be excellent. Hooray for several day long birthday celebrations! Did I mention that Matt and Coreycondo Sullivan put a candle on a cookie for me and got everyone to sing me happy birthday at poker the night before my birthday? Well, they did, and it was great. ¡Viva las celebraciones!
Training, Taking It To The Micro Man, Rolls With Rebecca
Today was a 5. I felt really good, got stuff done, and enjoyed the things I wanted to do.
-I started strength training again with my trainer Diana. We haven’t worked together for a long time because I haven’t been up to it for a long time. She used to come to the house and bring barbells and weights, but since I’m no longer burdened by chemo, I was able to go to her gym. I’m confident this will help me on my road to recovery. I’m very excited to be training again! I even remember some of the tricks she taught me, like sitting, shaking, and rolling over. Unfortunately, even after all this time, we’re still confronting my barking problem.
-I ran some errands (I drove! I could see today!), including marching into Micro Center and returning the overpriced graphics tablet I’d purchased there. When the woman asked what was wrong with it, I told her they were selling it for $120 more than another business in the area. She asked if I wanted her to see if she could price match it. I told her I had no problem with her, but that I didn’t want to give the store the satisfaction. By “the satisfaction,” I meant “any money whatsoever,” and whether she knew that or not, she let me return the tablet and wished me a nice day. Hah hah! Take that, you corporate barons, what with your high prices, lying sales associates, and very friendly and helpful customer service representatives!
-Rebecca and I started what we hope to make a new tradition of getting dinner one night a week. Since she moved out of the house, we figure this is a good way to make sure we stay in the habit of spending sibling time together and keeping one another up-to-date on our various goings-on. Tonight we ate at Sushi Sa Sa (try saying that a million times fast) in the Highlands neighborhood near downtown. The Highlands is hip and cool, so naturally, we fit right in. We ordered some original Sa Sa sushi rolls and some traditional sushi rolls; it was all delicious and surprisingly filling. I have to agree with Rebecca’s assessment that it was some of the freshest fish we’ve ever had in sushi. Highly recommended!
-As a bonus to our sibling night, we ran into popular radio personalities Slacker and Steve, who, much their credit (and my surprise), recognized me from that time I was on their radio show to support The Children’s Hospital (I thought there were pictures in that post… there are pictures somewhere). This was not only impressive because they surely meet thousands of people every week, but because I was totally and completely bald when we first met. And now I have hair. Very cool.
-I drove home, and no day would be complete without watching at least one episode of some television show with my parents. Tonight, Royal Pains featuring The Fonz and Lou Grant.
I’m as worn out as person who did a lot of stuff all day, and as happy as a clown that won the lottery.