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.

–Reid.

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.

–Reid.

What happens if I try tweeting a tweet with a link that Twitter says it will shorten, but that doesn’t fit before shortening? http://www.reidlevin.net/?p=4180

Your Tweet was over 140 characters. You’ll have to be more clever.

Hmn. Okay. That’s too bad.

I did it! Reid Levin Dot Net is officially fixed and back online in working order! Woohoo!

What do you mean you didn’t even notice it was gone or busted up? Listen here, you, just because I’ve restored the ability to comment doesn’t mean you can talk back to me! Oh… wait.

Unfortunately, the couple of posts I made in January that weren’t about my blog breaking reverted back to early draft versions of themselves. I may try to re-write and finish parts of those, or post them as they are, or ignore them forever and go about my business. Even more than losing those, I’m been very troubled by having to deal with some things over the past few weeks and not having had a place to write about them privately for everyone in the world with a web browser to read about.

Not only that, but I had a really amazing line for The Susan G. Komen for the Cure Foundation when they pulled their funding for breast cancer screening from Planned Parenthood earlier this week. I kept not posting it, though, because I was so damn certain that I was going to get my blog back online that night. But as every night passed, and I didn’t get the site back up, my amazing line became closer and closer to useless. Finally, Komen relented to social networking pressure before I got my blog up and running again, and before I released my amazing line upon the world.

And now? It’s totally worthless in this context! I mean, don’t get me wrong, I’m really happy they relented and all those lower income women will get their breast cancer screenings. I’ve just always kinda had this small childhood dream of being acknowledged as totally super awesome, is all. It’s always been a tiny goal of mine. One day, maybe. I’m sure there’s a lesson in all that.

I think it’s probably to use one liners on Twitter and Facebook when the time’s right–regardless of whether or not they will appear on my blog or not (heh, heh… Bloggernaut). Like my great Ron Paul line that, even though it was so great, I won’t repeat it here because it’s outdated now. It’s still great–I mean, really, really great–but, it’s a week or two out of the 24/7 news cycle and I don’t want to be tacky and repost a slightly outdated bit here just because it’s so great. I already posted it on Twitter and Facebook when it was fresh and new and that made its greatness really shine. I was smart back then. All the way back on January 22. Man, such a great line.

Hmmm… maybe this new amazing line would make a good bumper sticker, just a general line, not really directed at a specific organization, but more at those who would tamper with women’s health issues in general. Like conservatives, and ehm… bad doctors:

DON’T BE A PUSSY, SUPPORT WOMEN’S HEALTH™

Yeah, that’s a bumper sticker right there.

–Reid.

My blog is not working right. In fact, this post alone took an extraordinarily long time to post. I had to go into the system and fight the ghosts… and then manually boot the core back up using only a wet match, a broken plastic fork, and a proton accelerator… and then rewire all the physics and general relativity and stuff. It was very complicated work. Definitely much too hard to explain without making things up.

I wish I could take this thing into a blog garage, where there were blog mechanics and blog greasers who could just lift up the hood of my blog and they’d look at the PHP and say, “Heeey, there’s yeeer problem right there, yeeer database callsign something carburetor HTML gobbledygook moon language, I’ll get it right fixed up, buddy, tinker tinker tinker, there we are… yeeer good to go!” But there’s no such thing, so I probably have to fix it myself. I’ll probably get oil all over me.

And where’d those other two January posts go?

What a pain in the blog. I wish there were blog plumbers I could call, who would come over and plumb my blog. Let’s see here, there’s nothing in the phone book under the letter B… or the letter P… or the letter WWW. Maaaaan… I guess it may take me a while to figure this one out.

Unleeeeeess…

Are there still doctors that make house calls?

…for blogs? No? Damn.

–Reid.

I’ve temporarily suspended the ability to comment on posts for anyone that doesn’t have a WordPress id, because Reid Levin Dot Net has become inundated with spam comments. Despite my blog being equipped with some top notch spam comment filters, I watched in something less than abject horror but something more than extreme annoyance as, all of a sudden, my email count started ticking upwards by the millisecond, with notices of spam comments being made by robots with nothing better to do with their time.

Seriously, I’m supposed to believe that we can produce robots that sell Uggs and Xanax, but that we can’t bring Ben Franklin forward in time to live in my basement, where I’d slowly integrate him into modern society, showing him how much things have changed from his era, and he’d wisely explain how things are still very much the same? Yeah, I call shenanigans on that one. Big, fat shenanigans.

But don’t panic! I will figure something out soon! In the meantime, if there’s some sort of message you’d like to convey, please feel free to email me at reid levin at gmail dot com (some assembly required).

Thanks for your patience and understanding,

–Reid.

It’s the most wonderful time of the year! Christmas is almost upon us, and we Jews always feel a little bit left out of all the commercialized merriment. So we super size an event of our own, though it’s no birth of our Lord–in fact, it’s not even in the Torah–but it’s a nice, light holiday based on a 25-year-long bloody war between the Syrian/Greek Seleucid Empire, which ruled Judea and outlawed Judaism, and a Jewish guerrilla army, fighting for the right to practice their religion and–aw, to hell with it, let’s just light candles and open presents.

Happy Hanukkah! Well, at least we say that now. But I’ll bet that after the initial satisfaction of retaking the Second Temple in Jerusalem from the Seleucid Greeks wore off, the Maccabees were probably less than happy with the situation. Why? It’s a familiar story in the Middle East: oil.

Of course, we all know that even though the Maccabees only had one day’s worth of oil to keep the Temple’s ner tamid (eternal flame) lit, there was a miracle, and that oil lasted eight days, which was all well and good. But on that first night, they didn’t know that was going to happen. There was no way to know or predict that. All they knew was that they only had one day’s worth of oil. So they probably logically assumed that on the next day, the oil would run out and the flame would burn out. But the thing that must have really bothered them most about that situation? All of them? They’d been fighting the Greeks for three years with the goal of retaking the Temple… where they intended to relight the eternal flame… and yet, no one thought to bring more than one day’s worth of pure olive oil? Really? Judah? Jonathan? Simeon? Eleazar? Yochanan*? Anyone? Bueller?

Wow, for such an amazing military force, so small, yet able to take on the army of an empire, they didn’t really have all the planning down that one might expect. New supplies wouldn’t be available for eight days and, certainly, no one was expecting any kind of miracle to occur. Now, I’m no Rabbi or theologian or Talmudic scholar or clergyman or historian or professor or anthropologist. But I am qualified, I believe, to speculate that, instead of celebrating, the Maccabees probably spent their first night of what would become Hanukkah shvitzing and plotzing over who was going to deal with this business of obtaining more oil and who was ultimately responsible for not having brought enough oil along in the first place.

–Reid.

*Dude, Yochanan, it was really hard to find non-Latinized version of your name on the Internet. Turns out Christians use the name “John” in place of your name. I never heard it before, and frankly it sounds kind of strange. I’m sure it will never catch on. Just stick with Yochanan.

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.”

“Okay.”

“Are you at home?”

“No.”

“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.

–Reid.

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’ve been seeing my surgeon (platonically) every few days since he performed surgery to remove the large radiation burn from my lower back in October. We considered a plutonic-239 relationship, but radiation’s exactly what got me into this mess in the first place. At each of these visits, the surgeon looks at the work he did on my back, admires it, and says that it’s coming along nicely. Sometimes he’ll poke the surgery site with a cotton swab, or if he’s feeling particularly feisty, he’ll jab it with some sharp metal implement, whereupon I’ll squeal.

“Great, we’re done for today,” he always says at that point, entirely non-sarcastically, “it’s coming along nicely.” A nurse bandages up my freshly battered wound, and the entirety of my visit, from start to finish, is done within about five minutes. It’s routine.

Yet, I can’t help but feel something is off about this whole process. Perhaps it has to do with my surgeon, Dr. Laidback (not his real name), who told me that, after my surgery, I would be “all healed up within two weeks.” I know I’m not the greatest math wizard to ever dabble in in mathamagics, but I could swear that two weeks after October 21 would put Dr. Laidback’s estimate somewhere around October 41, or November 4, if you adjust for inflation. When he made that estimate, I offered a counter-estimate of uncontrollable laughter. But he stuck to his two weeks. And then, he oddly stuck to his two weeks, even as weeks and weeks went by. More than two weeks.

Eventually, LB (not his real initials) was forced to confront the problem of the fourth dimension, which, as we all know, is ego. Were my back to have healed entirely from surgery by that November 4 estimate, it would have had to have gone back in time and had surgery several months earlier, if not even longer ago than that. Because, as has become clear, this is not a two week heal deal, this is an ambiguous, unpredictable no one knows when it will heal deal. But, while LB acknowledges that my back is not healed, and will not be for some time, he continues to tell me how good it looks, and that I can get into a hot tub with it anytime I want. This is not a question I have ever asked–he is just saying this because hot tubs are known to be one of the ultimate places to get open wounds infected, and he wants to make it clear that my back is fine. Which is highly debatable, if not entirely untrue.

I don’t want to give the impression that I’m angry or sad or mopey about this, because I’m not. I knew, from my experiences over the past four years, that my body was not going to cooperate fully in this endeavor. And it is cooperating, to an extent; the surgery site is healing, it’s just going very slowly. The radiation burn on my back was removed from my lower back, one of the biggest tension spots on my body–so almost every movement I make causes that spot to contort in some way. Even before the sutures were taken out, the incisions split open. And then they got wider, and wider. And that was really scary, but they did eventually come back together and close up. So there is healing, but it’s slow.

And there’s a really amazingly great unimaginable good thing about this. Before this surgery, my lower back was dominated by a deep concave indentation, lined with scar tissue on the immediate surface and radiated and necrotic tissue immediately underneath it. I was told by everyone, every single doctor and surgeon and specialist who cared to weigh in since February 2008 (and there were a lot of them) that my back would never have a normal flat human back shape again. More than that, the theorized 14 hour surgery to attempt to fix my back was deemed to be so dangerous to my life that it would not be worth trying. I had given up on ever having a normal looking back again. And then, after nearly four years, LB restored the normal flat shape of my lower back without ever coming close to risking my life, and he pulled off a procedure that took far, far fewer than 14 hours. So I must give credit where credit is due.

That said, I have a hole in my back. Which I didn’t even realize until I took a picture of it a few days ago. One of the major disadvantages to having a wound on your lower back is that you can’t see it (even in a mirror, it’s like a vampire or something). And if you’re a good or, honestly, a squeamish patient like me, you probably won’t go sticking your fingers in it to explore what you can’t see. I think this information was very unintentionally not shared with me because so many people have looked at it and worked on it, from LB to nurses to other doctors to my parents, that everyone likely felt comfortable that someone else surely must’ve explained every detail to me. Oops. I don’t really blame anyone for this, but it surely furthers my anti-hot tub thinking.

I’m frustrated is what I am. I’m grateful for what my back will eventually be, but I’m frustrated with the healing process. Not because it’s slow, but because I have no concept of how slow it is (I actually had to ask LB to start measuring the hole, recently, y’know, for progress… yeesh) and because LB is really, really bad at estimating. Surgeons have to be unbelievably confident, like jet pilots are or Evel Knievel was, because they can’t have any doubts while they’re doing their job. While I absolutely recognize that it’s a job requirement, I’ve also had experience with surgeons where it can get out of hand. While there are plenty of nice, lovely surgeons, there are unfortunately surgeons whose confidence has turned them into asshole jockey surgeons, or god-complex surgeons, or, as in this case, laid back “everything’s cool” surgeons.

So I may be frustrated with my back for a while longer (not a real increment of time).

In the meantime, I’ve developed a new problem and I’ve come to better understand another one.

The new problem started a few weeks ago. From time to time, I have been having a pins-and-needles sensation in the palms of my hands that comes along with a sort of numbness. In many ways, this is similar to the peripheral neuropathies in my hands and feet that I developed during my first months of chemotherapy in late 2007. At that time, the nerves in my hands and feet were toxically damaged by specific chemo drugs to the point where they were excruciatingly painful at all times. I’m not sure why, but the neuropathies in both my hands faded away soon after I left the hospital in May ’08, while my feet took years to fully recover. At any rate, it’s quite odd that I’m experiencing anything like this again now, after chemo.

The fact is, the chemo drugs that caused damage to my peripheral nervous system should be long gone from my system. Also, when I had neuropathies during chemo, they were constant, but what I’m experiencing now in my hands comes and goes. The intensity varies, the length of time it lasts varies, and for some inexplicable reason, my fingers touching certain things, like fuzzy towels, or my beard, or sometimes even running water, seems to sometimes set off the sensation. I’ve had a series of tests run to determine what could be causing this, and other than ruling out diabetes (haha, take that, insulin!) and some other blood-based diseases, we’re pretty clueless at this point. I’m going to have a test called an EMG, which will determine if my nerves are being interfered with by one of the many medications I’m still on, or if there’s something wrong with my body, itself. This is done by sticking several needles into the underside of my wrist and sending electric currents through them. While I think it’s cool that there’s a test that can reveal the source of my problem, this test sounds absolutely terrifying. At least it will provide some sort of answers.

During chemo, I developed a large, ongoing fear of brain and nerve damage. I think it is rational and well justified. I had neurotoxins regularly put into my body for three and half years, my brain was dosed with cranial radiation, one of my chemo drugs that was delivered through my cerebrospinal fluid literally burned my brain, I had a three day psychotic break during which I could not be convinced that I was awake, I went through ten days of delirium that I can’t remember because I couldn’t form or access memories, I suffered nerve damage all over my body including terrible neuropathies in my hands and feet, and I was hit hard with chemotherapy-induced cognitive dysfunction (“chemobrain”), from which I am still reeling. On top of all of that, leukemia hides out in the brain and spinal cord even after it’s vanquished from the rest of the body. I’m trying my best not to get too freaked out about this, because I have no information that suggests that this is something to be freaked out about. I want to do these tests and see what they say, but the longer this goes on without any information why, the harder it becomes not let my mind wander into worrisome territory. I think I’m doing pretty well at keeping calm at the moment, considering.

Oh, excuse me. What a coincidence. I just now found out that my EMG will be in mid-February. That’s disheartening. I’ll talk to my new PCP and see if she can maybe get that moved up a bit.

Which is actually a smooth transition to my last topic cluster for this entry. I’ve been switching over to all adult doctors, which someone should have prepared me to do before I was done with chemo (even if it was simply by saying so). There is no question in my mind that Children’s Hospital was the right place for me to be treated for my leukemia, even though I was in my mid to late 20′s while under their care. I truly believe that if I had been in the care of an adult hospital, I would not be alive today. But, when treatment for my pediatric disease came to a close, it was time for me to move on from Children’s, with a few exceptions. But I didn’t know that, I didn’t figure that out until months and months too late. I figured the people that had treated me for three-and-a-half-years of chemo would be the people to see me through recovery. But I was wrong.

This isn’t a condemnation of Children’s in any way, although, I would like to let them know that in the future they need to help their adult patients transition better. There was harm done that I think could be avoided in the future. One of the biggest examples I can give is that young kids who complete chemotherapy might experience some lingering effects, but they’re usually up and bouncing off the walls pretty fast. When I was complained of extreme exhaustion for months and months after I completed chemo, explaining that I had gone from three-day-long spans of insomnia during chemo to being unable to so much as write in my blog because I was sleeping all the time, my docs scratched their heads. This just isn’t something kids experience on the level that adults do–so the pediatric doctors wouldn’t (and shouldn’t be expected to) have any experience with its rather simple diagnosis.

I was told by several of my doctors that the reason I was so exhausted, so unable to do anything besides sleep and drag myself to doctors appointments (like HBO… where’d I’d go sleep), was because I was depressed. And I was depressed; I was very, very depressed. Because I had no idea that recovery was going to be so prolonged, I had no idea the work it would take to be considered “done,” and I had no idea why I couldn’t get started on that work because I couldn’t get out of bed. When I was told that my depression was the cause of my exhaustion, I became much more depressed. I felt guilty, because it was clearly my fault that I was so tired and weak and unable to recover, and if only I’d be less depressed things would get better. And these thoughts made me more and more and more depressed.

Because they were completely wrong.

It took me until October to first see my new PCP. She is an internist that specializes in helping adults who have been through chemo. The difference in speaking to her and speaking to any of my doctors at Children’s isn’t the level of concern or intelligence, but experience with people like me. At that first appointment, she managed to do something to my deep depression with a few words that months of therapy and pills couldn’t touch at all.

“You’re right in the middle of the bell curve, Reid, you’re right where I’d expect you to be,” she told me. “Patients who are six months out from recovering from three months of chemotherapy experience the same symptoms you’re experiencing, and you were on chemotherapy for three-and-a-half years. Between your medications, your body healing itself, and fatigue that has been scientifically proven but is not entirely understood, it makes sense for you to be so exhausted.”

I won’t lie and say that all of my depression and anxiety was lifted at that moment. But a great deal of it was. I never, ever, in a million, bajillion years would have thought that someone telling me I was normal would have such an impact on me. It was as if a huge fog was removed, and a huge weight lifted. I didn’t have to feel guilty for being exhausted, I didn’t have to justify why, even though I wasn’t sick, I just didn’t feel up to doing anything. And as days went on, and I was able to truly process that and breathe so many sighs of relief, I started to feel the tiniest bit of strength and energy returning to my body. It was only a very, very small amount, not enough to come close to overpower my exhaustion, but enough to give me hope. Enough to show me that I am capable of regaining my strength and energy. I didn’t know until then, but I had been stripped of all hope.

I have that shred of hope, and that’s what I needed. This situation will never, ever be one that I would have picked if given the choice, but I know now that I can overcome it. I know I can get better. And I will, even if it takes building myself up by the tiniest of amounts, bit by bit.

–Reid.