A Happy Hanukkah… Or Was It, You Putz?!
Wednesday December 21st 2011, 8:54 am
Filed under: Who Knows?

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.



Four Years Alive.
Wednesday December 07th 2011, 11:59 pm
Filed under: Better Than The Machine, Denver, Family, Friends, Leukemia, Me, Myself, and Reid, NYC

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).

xkcd: Lanes



My Back! My Nerves! My Brain! My… Slightly Better Everything?
Friday December 02nd 2011, 5:50 pm
Filed under: Leukemia, Me, Myself, and Reid

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.



Surgery Went Fantastic, I’m Recovering Well, HBO Ended Nicely
Wednesday November 02nd 2011, 9:59 pm
Filed under: Family, Friends, Leukemia, Me, Myself, and Reid

Thank you to everyone for the thoughts and prayers and checkings-in about my surgery two Fridays ago, and how my recovery from that surgery has been going. These things always mean a lot to me, even if it takes me a couple of weeks or months or some further highly inappropriate span of time to say so.

My surgery went very well, which in itself was a huge victory for me. Furthermore!, once the surgery was underway, the surgeon decided that it was unnecessary to remove–by manner of chipping, yanking, wielding, or otherwise–any part of any of my vertebrae. I found this to be quite a turn of good luck, seeing as how much I love using my spinal cord on a daily basis. Not that my spinal cord was ever in that much peril, but not having to touch its shell sure made me more comfortable. Or it would’ve, if I’d known about it beforehand. Oh well. Still good news!

Everyone involved with the surgery was fantastic. Of course, there was the surgeon, who I am forced to assume did very well for two specific reasons. First, he must be very good because everyone in the know says my back looks very good. Second, I must take those folks’ word since the surgeon never showed me how it looked when it was finished, like my barber would’ve done with his little mirror, so I could see the the back of my new back. Then, of course, there was the anesthesiologist, the surgery team (whose individual job titles I never really caught), the pre-op nurse, the post-op nurse, my family who waited outside (some farther away than others), and finally me, who waited inside the whole time. Every single one, fantastic.

The inpatient situation was laughably bad now that I’m nearly two weeks out from it. Before now, it was laughable and stupid, before that, it was stupid and dangerous, and before thaaaat, it was dangerous and frightening, while at the time, I didn’t quite fear for my life, I may have spent several hours, curled up in my bed, wondering what small straw it would take to break that camel’s back. Ha ha ha! Hilarious.

Those nurses of the nursing staff with which I personally interacted during my short stay at Presbyterian/St. Luke’s Hospital were not up to the same standards of not invading my tiny, irregular pentagonally shaped room at 3:37 AM, of not moving the only chair out of said irregular pentagonally shaped room, of not requiring an hour’s worth of trigonometry to move said chair, and of not not trying to choke me with my canula several times and tipping over my IV tree, from which dangled tubes and whatnot that went into the veins in my hand, which I think might work their way back up to my heart, which probably could’ve just been yanked out right there but it fell on the chair, all while performing said trigonometry that I’ve experienced at other hospitals.

Moving away from that tiny bit of unpleasantness (well, a lots of unpleasantness in a small amount of time), the morning after my surgery, I was wheeled down from the aforementioned irregular pentagonally shaped room to hyperbaric oxygen therapy (HBO). It turned out that Saturday morning HBO was only attended by me and veteran HBOer Tucker. Tucker was not all that fond of me invading his usual solo HBO excursions in a chamber built for 12 people. Tucker was six (making this particular session’s average age far below the standard 83 years old, at a mere 11), and by the time he and one of the HBO technicians played two hours worth of tic-tac-toe under 45 feet of pressure, Tucker didn’t seem to mind me much anymore.

The next day, I switched back to my normal afternoons in the chamber, where no one would play tic-tac-toe with me, and I was the one dragging down the average age. I was the only one whose hair hadn’t all gone gray or fallen out. I stopped bringing anything to read for those two hours in the chamber, because somebody liked me and kept giving me a bunk to sleep on. But, honestly, I loved all those folks. I really enjoyed this past month getting to know them. We’d talk before and after treatment, and inside the chamber, on breaks from wearing our various oxygen headgear. Everyone was so damn nice. Every single one of us were cancer survivors, and until the last few days when a new patient joined us, all of us had been wounded by radiation. It didn’t matter how old any of us were. There was as an amazing strength of spirit amongst us. I wish all of the friends I met in the hyperbaric chambers very good luck, and the best of health.

I finished hyperbaric oxygen therapy on Monday, on condition that if my back looks even the slightest bit wonky while healing, I’ll go back. At a checkup with my surgeon on Tuesday, no wonkiness was detected–he said said it was looking great and healing as expected. Someone simply looking at a wound and saying “this looks like expected” for me is another victory.

I really only have the highest praise for everyone in the HBO center at Presbyterian/St. Luke’s Hospital. From the doctors, to the nurses, to the hyperbaric chamber technicians, to the office staff, everyone made me feel like part of a community of mutual respect and support. They’re great. So if you find yourself in the Rocky Mountain Region any time soon with any sort of major radiation wound, or carbon monoxide poisoning, or just a case of the bends, I recommend these folks whole heartedly!

–Reid.
Hyperbolic Therapy Technician

P.S. I’ve discovered that if too much air gets into my tummy while under pressure, that air then expands, and I have massive, largely uncontrollable burps for the next 18 hours.



I’m Having Surgery Tomorrow (Friday); also, I’ve Been Getting HBO For Two Weeks
Thursday October 20th 2011, 11:26 pm
Filed under: Denver, Leukemia

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.

Grinder, hoagie, or submarine: you decide.

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.

I hope.

–Reid.

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.



I’m No Longer Addicted To A Lowly 10mg Of Methadone!
Monday September 19th 2011, 12:08 am
Filed under: Health (Not Cancer)

Hooray! I recently successfully completed my long wean off of 10mg of methadone. I am no longer addicted to those mere, insignificant 10mg of methadone! That hellish month of withdrawal is finally over! Let the hellish weeks of withdrawal from 7.5mg of methadone begin! Yeah…! Er, wait. Crap.

A few weeks ago, some of my pain management doctors took a minor interest in the two week wean they had started me on four weeks earlier, because they knew I was suffering and also because my mom had called them. They advised that since I was having so much trouble on only 7.5mg of methadone a day, I should up my dose back to 10mg a day. The good thing about this idiot-proof plan would be that my withdrawal–the hallucinations, the crawling skin, the pain, and everything else–would go away very quickly. The less good thing about this well thought out plan was that I would have spent several weeks going through wretched withdrawal for nothing–only to have to start again from scratch.

Since I steadfastly refused to go back up to 10mg, I was prescribed little sticky anti-pain patches to “end withdrawal faster” and “help alleviate my symptoms.” Two things immediately came to mind; first, I wondered why, if these things help with withdrawal, I hadn’t received some at the start of the wean. Second, having never been on any kind of little sticky patches for medical reasons before, I was skeptical of their usefulness for anything other than further agitating smokers. I got a box of little sticky patches, slapped one on… and remained skeptical. Rightly so, I’ve decided after a few weeks–I think these things might just be stickers without any real medical benefit. And even as stickers, they’re pretty lame. I mean they don’t even have a dinosaur, or a happy face, or a truck on them, let alone someone like SpongeBob, Fred Flintstone, or Bob Newhart. Oh well, I still managed to successfully power (low power, mind you, but still power) through that episode of withdrawal.

Very early in the wean, I decided that I would take a break between future weans, so as to avoid eternal, neverending torment every single day for the rest of the remaining months it will take me to fully wean off methadone. None of my doctors objected to this because I did not tell them about it. When they find out, even if they don’t respond well to my break-from-unending-torment reasoning, I have another reason: I can’t fit any more withdrawal into into this month’s schedule. I have two weddings coming up (different brides in different states) in which I play the integral roll (not groom) of eating cake and being in pictures.

I never thought it would take so long to get through the first part of the wean because, despite my concerns, I was assured I would be able to lower my dosage by 2.5mg roughly every two weeks until there were no mg of methadone left. Ha ha ha, medical humor! However, since going down only 2.5mg took so long, and since I don’t want to be talking to velociraptors and unicorns and submarines at the weddings, I can’t do any more weaning until next month.

I’ve been on my first break from weaning for little while, and I’ve been thinking about how great it’ll be to have this big chunk of time off from weaning and its evil twin, withdrawal. But the more I thought about it, I realized that as much as I hated that month of withdrawal, methadone has been plaguing me for three years. I hate methadone. Don’t get me wrong, I also hate the methadone withdrawal I went through, which I’ll likely go through again each time I lower my dosage. But at least I know, no matter how psychosomatic addict insane the withdrawal gets, and no matter how long it lasts, it will have an end. And when it ends, methadone’s stranglehold on me will be no more.

–Reid.

P.S. I’m going to see my pain management doctors tomorrow. That should be interesting.



9/11, Ten Years Gone, Ten Years Still Here.
Monday September 12th 2011, 8:30 am
Filed under: NYC

(NOTE: for those that don’t know, I lived a few blocks from the World Trade Center on 9/11/01. I wrote about it ten years ago.)

It’s quite a peculiar feeling having a day so ingrained in my memory that I can say where I was, what I was doing, and who was saying what to whom at any given time. It’s almost as if I have a video with more than just picture and sound–with touch, smell, thought, time, emotions and everything else we use to experience reality–in my mind’s library. Although I am able to watch that video anytime, it’s not something I care to watch often. It’s the only such video of its kind in my mind’s library, because there has only ever been one day that so completely burned itself into my memory: September 11, 2001. That day, I witnessed with my own eyes over 600 people die when the second airplane struck the South Tower, I witnessed with my own eyes countless people jumping to their deaths from the upper floors of the burning buildings, and when the North Tower fell, I witnessed with my own eyes the deaths of over one thousand people in an single moment.

Every September 11, no matter how comforted or distracted or engaged I may be, the video starts, and it cannot be stopped until shown in its entirety. No matter what I’m doing outwardly, no matter the activity or the conversation, on some level, I am reliving September 11, 2001 inside. If you ask what I’m hearing, it’s the cacophonous mix of hundreds of every kind of first responder siren imaginable. If you ask what I’m smelling, it’s like a mix of gasoline and hot tar, but I’m not quite sure because I’m breathing in the ashes of office supplies, building parts, and human beings. If you ask what I’m seeing, it’s tall, billowing streams of smoke into a perfect blue sky. But when I look down, all I see is paper. Papers with pie charts, papers for sales pitches, paper from books, lined paper with freshly scribbled incomplete notes, and charred photographs of families, all engulfed in darkness, the sun nowhere to be seen.

Every year since 9/11, I’ve had trouble figuring out the best way for me to observe its anniversary. I’ve rarely been certain about what I’m going to do, despite my best efforts. I’ve spent some anniversaries talking to lots of people who weren’t there about what it was like in downtown New York that day. I’ve written about 9/11 and how far (or not) we’ve come. I’ve been pulled away to things totally unrelated. Don’t get me wrong, I think people should do whatever they feel is appropriate on 9/11–if riding a roller coaster makes you feel like you’re taking it to the terrorists, then good for you! Or, if you don’t really mark the day in any special way, that’s okay, too.

Through the years, I’ve found that what I need is some sort of comforting. For the first anniversary, I worked on a play with friends from school, who had all been downtown on 9/11. Most of them found it comforting, but I really struggled. The second anniversary, I went out of town to see a concert with some friends. It was some nice escapism, and kind of a relief to find out that fun still existed. For the next several years, Amy and I stayed in the apartment on the anniversaries of 9/11, not because we were scared and not just because we were sad, but because it was a shared experience for us. We went through that day together, which linked us together in a sort of tragic way. We were never able to convey our experience to other people in a way that made them understand it like we did. It just defied explanation. But we’d gone through it together, so we didn’t have to work at understanding each other. I think I found that to be the most comforting.

Maybe this is a curse, having to relive those terrible things in my head. I don’t know if it is. But even if it is a curse, it’s also a blessing, because I will never forget that day in New York City. I will never forget the horror, certainly, but nor will I forget the bravery, the selflessness, or the sacrifice of so many that day. I am honored to be able to remember 9/11 so vividly for the heroes, the victims, and their families. They should not, and will not ever be forgotten.

–Reid.



Addiction and Withdrawal (and some other things that’d take away from that dramatic title) (whoops)
Tuesday August 30th 2011, 9:18 pm
Filed under: Friends, Health (Not Cancer), Me, Myself, and Reid, NYC, Sodapopcornculture

FROM THE WRITER, WRITTEN AFTER EVERYTHING ELSE, JUST BECAUSE: I’m sick right now. I have been for what feels like a very long time. Most of August, at least. This is a long entry, because there’s a lot to cover. There’s a lot to say about what’s going on right now. I’m going to try to write shorter entries as soon as possible, in the hopes that I get my groove back. Right now, though, I’m moving even slower than normal due to the aforementioned being sickness. Now, onto things I wrote before now.

* * *

I’m giving up the day rating system because, frankly, I don’t like rating things with numbers. For me, when rating things, the values of numbers feel arbitrary while the values of words feel exact. And to all those equation-huggers out there vilifying me as an anti-numeralist and saying I have some sort of anti-numbers agenda, let me be perfectly clear: this has nothing to do with my anti-math campaign. Just like our traditional Roman alphabet, numbers should be used to rate things on blogs–just not my blog. Look, I love using numbers for all kinds of stuff, like… ranking things! Yeah!

Now let’s see where we left off…

Ah yes, rebound headaches and New York City.

I made it to NYC for the first time in nearly a year!, albeit while having continuous rebound headaches. I spent most of my time in a hotel room, with the lights off and the air conditioner turned way up (up, of course, being the direction one turns an air conditioner so that it will make the temperature go down), just trying hard to sleep. Which was all well and good but, believe it or not, wasn’t the highlight of my trip.

I was able to attend Wes’s bachelor party and join some good friends in celebration. Wes and I grew up together in Colorado, and he moved out to NYC after college. At some point early on in Wes’s life in NYC, Paul Syracuse and I inadvertently matched him up with Paul’s friend Emily, another transplant to NYC. Wes and Emily will be getting married soon in Emily’s homestate of Iowa. Due to the intermixing of these various social networks, I got to celebrate with some friends I grew up with in Colorado and some friends I’d made in NYC. It was really great having guys from these different groups of friends, many of whom are normally so scattered to the four corners of the world, in the same place at the same time. It was nice catching up with people I don’t get to see all that often, and it was fun hanging out with everyone. I was glad I toughed it out for the party. Not the whole party, but for a good chunk of it. Not a big chunk, but definitely a good chunk. Yep, a chunk of the party that lasted exactly as long as I was able to tough it out with migraine-strength headaches. I made it through dinner. But still! It was great.

I did only a few other things whilst in NYC, when my head would allow. Matt Gallo and I saw Will, BTTM’s stage director, performing his sketch comedy play phenomenon, Dystopia Gardens, which was just reviewed by the New York Times. I saw Spider-man with Jason, Reiman, and a surprisingly at capacity-looking audience. And I got some ice cream. By the time I was leaving, my rebound headaches were much less frequent. This in no way stopped them from getting in the way of things I wanted to be doing, but it was certainly a nice feeling knowing they were on their way out.

How would I rate the trip? On the one hand, 1) there were tons of people I didn’t get to see that I would’ve liked to have seen; 2) my hotel was hosting a creepy child beauty pageant (is there any other kind besides creepy?), for which “parents” bred intricate ballroom gowns with little girls inside them, who had been trained to sit, fetch, and bark “America The Beautiful;” and, 3) I was plagued by rebound headaches. On the other hand, Spider-man didn’t fall on me. I therefore consider the trip a success.

After I returned home and took a few days to recover from traveling, I finally began the wean off the one medication, more than any other, that I’d been waiting years to stop taking: methadone. Methadone is popularly known as an anti-addictive drug to help people get off extremely addictive and deadly opiates like heroin. It’s also a very powerful pain-reliever. When I was in the hospital for all those many, many months in 2008, I was put on a tremendous number of pain medications to help with my tremendous amount of pain. Among them, (you guessed it… probably) methadone, which I’ve never completely stopped taking.

That isn’t to say I haven’t tried before. From late July ’08 through January ’09, we successfully weaned me down from 80mg of methadone a day to 10mg a day with no trouble. We proceded to the next step of the wean but had to stop when, for the first time in my life, I experienced withdrawal. My docs talked about various other plans to get me completely off the stuff, but it was decided that chemo was hard enough on me as it was and that I was still experiencing chronic pain, so I couldn’t go off it until I was done with chemo. Over the intervening days and weeks and months, as I learned more about methadone and all of its bad side effects, the more I wanted off of it. Eventually, chemo ended and eventually the doctors in charge of my pain medications came up with a new plan to get me off methadone–this time, without withdrawal. My first day on this new plan, when I took the smallest dose of methadone I’ve taken since January ’09, I was almost as happy as the day I finished chemo.

A few days passed, and the wean was going great. I was having fewer and fewer rebound headaches, but as I said, they were still causing trouble. Like many of my health issues of the past four years, the rebound headaches didn’t have the best timing. They’d pounce on me when there was something I wanted to do, and they were nowhere to be found when there was something I didn’t want to do. At last, they seemed to depart for good, just in time for another pre-wedding celebration: an engagement party for my buddy Loren and his fiance, Laura. They’re great. They’re perfect for each other, and I’m very happy for them. Very happy. That being said, I didn’t know people still had engagement parties, a curiosity which I made a point of asking the happy couple about. They explained that since they are getting married in a year or something, that they were holding… or doing… a sort of a… uhm… I don’t know. I think the whole thing was a brilliant racket to get double the gifts of a normal wedding. Brilliant. Good for you guys! It was a great party, too!

Several days passed. And it started.

Methadone withdrawal. Again. But different this time. Worse. Awful headaches, stomachaches, body pain, sweats, hallucinations, and all sorts of other symptoms. And due to my experience with rebound headaches, I can now only take short acting pain medications eight days a month. There was a about a week before it was clear that I was suffering from withdrawal. And it’s been another week since then. I have no feeling for when it will stop. It’s hard to decide if this day is one of the days I should take a pain reliever, or if I should hold off in case there are worse days ahead when I’ll need it even more. I really don’t want to be in any worse condition than this without some kind of relief.

And, yes, eight days a month. Because I had rebound headaches, that’s my limit on any short acting pain medication, which includes everything from Advil and Tylenol to Percoset and Oxycodone. If I don’t adhere to this for what could be years, I risk triggering the headaches again. And to think, If either of the doctors that put me on 2,400mg of ibuprofen had first asked me if I get many headaches, that would have sent up a red flag. It’s very likely that I wouldn’t have had the rebound headaches and that I wouldn’t have had these restrictions put in place. Rebound headaches are also called medication overuse headaches, and it’s easy to see why when you swallow 2.4 grams of Advil a day continuously for almost two months.

When I’m finally able to tolerate this dose of methadone without signs of withdrawal, I’ll take a breather, and then weaning will continue. I’ll step down to an even lower dose. Withdrawal hurts. It hurts my body and it hurts my mind. Today, I’ve had trouble putting sentences together. Thoughts in my head are all over, but hard to find when I go looking for them. I am, however, finding it particularly easy to hold a conversation with my fan. I’m scared, because I know what going down a dose has done to me this time, and I fear what it will be like next time.

My rebound headaches and my methadone withdrawal share some similarities. The origins of both the headaches and the withdrawal can be traced back to well-intentioned doctors putting me on pain medications for long periods of time (ibuprofen and methadone, respectively). In both cases, I took the medications exactly as directed–to. the. letter. And from each, I wound up with a disease no one can simply go out and catch. Addiction. Addiction, addiction, addiction. I had a healthy respect for addiction’s power before, and a good level of disdain towards it. Now, after spending the better part of a month learning about withdrawal first hand, and knowing I’ll probably be spending at least one more doing the same, my feelings about addiction have all turned to fear.

But don’t let there be any mistake, methadone: I want to kick you for good, more than I want to stop right now and feel better. And believe me, I want to take that little extra dose that I know would make me feel better. I really want to take it. But I won’t. I never asked for you, but you forced me into addiction anyway, and you’ve caused me so much anguish. You may be a big, ferocious beast, methadone, but I’ve fought much bigger and much badder beasts than you. And I’ve slain each and every one of them. No matter what it takes, no matter how long it takes, I’m going to win this. And you will lose.

–Reid.



Tomorrow, I’ll Be In NYC or Be Incensed (or both): My New Battle With Rebound Headaches
Thursday August 11th 2011, 11:59 pm
Filed under: Friends, Health (Not Cancer), NYC

Thursday was a 2.

I have a plane ticket to go to NYC tomorrow (Friday). I’m supposed to go in for a friend’s bachelor party. I know that over the past year, I’ve told a lot of people I’d let them know when I was coming into NYC for the first time since finishing chemo. I want to let you know that I very much intended to make the rounds and tell all of you last week. However, last Wednesday I started having terrible headaches and not feeling well.

On Monday, I saw a doctor, who diagnosed me with medication overuse headaches, also known as rebound headaches. Basically, they work like this: 1) someone with chronic headaches takes too many short acting pain relief medications (examples below), 2) they start to develop medication overuse headaches, which they usually then 3) treat with more of these short acting pain relief medications, creating a bad cycle. Short acting medications usually last from 3-4 hours and can be anything from over-the-counter drugs like Advil and Excedrin to opioids like Hydromorphone (Dilaudid) and Oxycodone (Percoset). And, of course, I’ve taken all four of those at some point, though only three very recently.

When I was on chemo, I couldn’t go on any sort of migraine medication due to all of the bad chemical interactions they’d have with all of the many, many medications I was on. Unfortunately, I’m still on most of these medications (though, slowly getting off of them). At some point, I was told to use Percoset for my migraines. This is not really a fun way to deal with migraines, so it was suggested I try taking Excedrin first, and if that didn’t relieve my symptoms within half-an-hour, take Percoset. This has been going on for quite a while. I don’t take those nearly every day, and I take the Percoset about half the time I take the Excedrin. It seems unlikely that these two, despite the incredibly strange use they’re being used for, are giving me rebound headaches.

The clearly guilty party here wasn’t even prescribed for pain. On June 18, I was diagnosed with having a superficial clot in my lower left arm, caused by an IV put in my hand for the surgery to remove my mediport the week before. The clot grew down, across my wrist, onto the top of my hand. Although a little tiny part remains, most of it is now gone thanks to a very tame blood thinner I was put on: Advil. The ER doctor who diagnosed my clot told me to take four Advil three times a day until my clot went away. This was not a largely questionable thing for him to do, and I don’t blame him for these headaches.

The next week, in fact, I found out that a rotator cuff tendon in my right shoulder was (and still is) torn. The orthopedist had my shoulder injected with steroids to help with the immediate pain. He said my tendon would probably take a year to heal, and to ward off the pain, I should be taking four Advil three times a day. What a great coincidence! Since I was already taking that much, I didn’t even have to think about changing anything.

I have very little doubt that this constant intake of Advil caused my rebound headaches. From what I understand, these kinds of headaches almost only (or only) affect people with underlying chronic headache problems, and neither of the doctors who told me to take Advil knew that I had migraines. Since I was diagnosed on Monday, I’ve stopped taking Advil. That’s just a part of the cure for these headaches, which is to grin and bear the pain from these damn things for approximately two to ten days, without taking any short acting pain relief medications at all. Stopping taking these drugs so quickly usually leads to worse headaches and signs of drug withdrawal. The rebound headaches should subside after that time, but I’ll be extremely limited on when I can take short acting pain relievers ever again, or I may relapse and have to grin and bear this pain again. No thanks!

So that’s where I’m at right now. I’m going to go to sleep, and hopefully when I wake up, my head will stop rebounding and start swishing from the three point line. If not, I can’t say for sure what I’ll do. It seems like it would pretty terrible to travel like this, but on the other hand, friends and New York seem like they’d be pretty terrible to miss, too.

–Reid.



A Week In Lengthy Brief Summary, part one
Tuesday August 09th 2011, 11:59 pm
Filed under: Denver, Family, Friends, Health (Not Cancer), Knowledge Junkie, Liberty!, Me, Myself, and Reid

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.

–Reid.