Tch. This Is Sooo Reid.
Monday May 16th 2011, 10:22 pm
Filed under: Denver, Family, Health (Not Cancer), Me, Myself, and Reid, RestauRants

Update of Great Importance 5/17/2011: To my dear family and friends, I am truly sorry; I never meant to imply that I ate at Casa Bonita the night that this entry took place. I only meant to convey that Casa Bonita is the standard for bad Mexican food. I apologize for any inconvenience this may have caused to you and/or the Mexican food industry. Thank you for your understanding. I will try to be more clear in the future.

Last night, my folks and I went out with my Aunt Stacie, my cousin Jeff, and Jeff’s “hey! we know you through the grapevine!” girlfriend Lee–an all-around fun group to go out with. We went to a very authentic Mexican restaurant that my aunt really likes. Everyone here has their own favorite “very authentic Mexican” place, and each varies in degree of objective authenticity. The agreed upon least authentic, but perhaps most fun “very authentic Mexican” experience is Casa Bonita. There is not, however, any agreed upon top end to the “very authentic Mexican” scale.

So anyway, we were at this authentic Mexican restaurant (that was not Casa Bonita), and for the first 30 minutes, we were having a great time. We picked our food from this huge menu, people got their fancy alcoholic drinks, and Jeff, Lee and I were laughing about both things and stuff. In fact, I would say we were having a marvelous time.

Then, my hands turned blue. Well, my fingers did, anyway. My palms remained a healthy pasty pinkish hue. After a few minutes of everyone making fun of me (in their defense, it did look like I’d smeared blue ink all over my fingers), we realized that this might indicate a life-threatening problem. I called one of my doctors, who reacted with several, “Oh my god!”s and told me to head to the nearest ER. Blue coloration in the extremities is a sign that blood is not getting to where it needs to be.

I had never been to this ER, but, as far as ERs go, it was pretty good. The ER nurses and doctors worked hard to determine the cause of my cyanosis (Medical English for “Blue Man Group extremities”). There were a lot of reasons why this was difficult to pin down. One of the primary reasons for this was that fingers on both of my hands had turned blue. Meaning that either a common blood pathway had to be not working correctly, and that would be the heart, which they ruled out, or that, incredibly improbably, two clots that had formed separately at the same time on both sides of my body. There was some concern about my central line, but as I understood it, the way it’s setup into my heart, it wouldn’t create a problem on both sides of my body evenly.

I underwent an ultrasound to make sure there weren’t any clots. There were no clots. By the time that was done, about an hour and half after my fingers first turned blue, they were almost totally back to their normal color. The ER doctor explained that some people simply have “asymptomatic problems” that don’t really seem to be the result of, or indicative of anything. I howled with laughter (on the inside), and quipped, “You don’t know the half of it!” (on the inside). They could not explain why my fingers had turned blue.

So I was released with a paper that said, basically, “we don’t know why this happened, but you’re okay.” My primary doctors were less than satisfied with this conclusion, and are intent on not letting it go. They’re conferring and racking their brains to solve yet another Reid Levin Medical Mystery™. This Wednesday, at my first post-chemo clinic visit, they will now have a lot to thoroughly examine and test. Although I’ve known this for a long time, it’s still nice to by reminded that my doctors have my back and are concerned enough about me to try to figure all of these weird t”this would only happen to Reid!” hings out.

Maybe it should scare me a little bit, too. Honestly, though, I think this incident was just my body saying, “Okay, chemo is over, what other kind of mischief can I get into?” Again, that was not a satisfactory answer for my doctors. Which is good.

Oh, and since I didn’t get to eat my dinner, I went to Taco Bell after I was released from the ER. I got my just-above Casa Bonita “very authentic Mexican” food in the end. Muy bueno!

–Reid.



Intermission
Friday May 13th 2011, 11:00 pm
Filed under: Family, Friends, Leukemia, Me, Myself, and Reid, Music

Ladies and Gentlemen, thank you for all of your kind words of congratulations and encouragement, whether via the Internet, by telephone, in person, by raising your glass, left on the front porch (anonymously), and by any and all other means. You are all truly wonderful friends and I am honored to have you in my life.

Last night at 10:30 MDT, I took my final dose of 6-mercaptopurine, and in doing so, brought my three and a half years on chemotherapy to an end. Before those three and a half years, I spent several months searching for a diagnosis to explain why I was in so much pain, which turned out to be acute lymphoblastic leukemia. All told, I’ve been fighting leukemia nonstop for about four years. And while I’m done fighting leukemia, I’m not quite done getting well yet.

Over the coming months, I will be weaned off the non-chemotherapy support medications I’ve been taking for the past several years. I’ll be undergoing regular tests to check for leukemia blasts, to make sure my immune system is rebuilding itself correctly, and to make sure there’s nothing else concerning happening in my body. None of that comes close to what is now behind me, but it will take me time to heal–it will be awhile before I’m truly healthy and able to fully move on to the rest of my life.

While I’m taking care of getting better, stand up, stretch your legs, go to the lobby and get some snacks. The restrooms are out the main doors to the left. This is the end of Reid Levin: Act II. I don’t know exactly what’s coming in Act III, but I know it will be long (seriously, if you’ve got to go, go now) and I know that it will be a dashing and bold adventure.

I hope you’ll join me for Act III. I can’t wait to see what it holds.

–Reid.

Written while listening to the extremely pertinent “Swim” by Jack’s Mannequin (it was written while the lead singer was fighting acute lymphoblastic leukemia).



The Grand Finale: ONE DAY TO GO!!!
Thursday May 12th 2011, 5:48 am
Filed under: Leukemia, Tweet Tweet

Reports are coming in… yes, Hell has frozen over! This is it. ¡¡¡MY LAST DAY OF CHEMO!!! The fat lady is singing her head off right now.



TWO (well… one and a half now, really) DAYS TO GO!! GRATUITOUS USE OF EXCLAMATION POINTS AND CAPITAL LETTERS!!
Wednesday May 11th 2011, 4:58 pm
Filed under: Leukemia, Word Nerd

Tonight, I will take my FINAL DOSE OF METHOTREXATE!! EVER. I mean… it’ll still be in my system until next week, but the significance of actually TAKING MY LAST DOSE is still HUGE!!

Tonight, I will take my PENULTIMATE DOSE OF 6-MERCAPTOPURINE!! EVER. Huh. That “EVER” doesn’t really make SENSE. Maybe… let’s see… if I say… my SECOND-TO-LAST DOSE OF 6-MERCAPTOPURINE!! EVER. Yeah, that’s BETTER.

FREEDOM FROM CHEMOTHERAPY and its many ills (and, to be fair, protections) draws NIGH!!

I can hardly believe I’m so close to being done. WOOHOO!!

–REID!



THREE DAYS Until I’m Off Chemo!! But, er… Blech.
Tuesday May 10th 2011, 11:47 pm
Filed under: Family, Leukemia

Two more days of chemotherapy, three days until I’m free, a weekend and change until I start feeling better, and of course that means it’s… time for me to get sick. Aw nuts.

I felt good this morning, despite a bad night of almost no sleep. I felt tall, and was told I looked taller than normal, and that’s usually an indicator that my health is good. Good enough to stand up straight. Or… straighter, at least. The mysterious stranger who has been leaving me countdown gifts and messages every day left three large inflatable flamingos on our front porch today (don’t worry, I’ll be showing off photographs when I get a complete 10-1 set). Frankly, those birds put me in a pretty great mood. I had a regular doctor’s appointment which went well.

I went to lunch with my mom, which was nice. I told her I wished Mother’s Day could’ve been next week so I could’ve properly celebrated the day and her and other motherly figures I want to celebrate. I guess I still can, I don’t think there’s a rule against that. I’ll have to call Hallmark and check.

Then I went over to my grandparents’ house and worked on my grandfather’s computer for awhile. For some time, I’ve been telling him that whenever I felt up to it, I’d help him with the sad machine–and today, I finally felt up to it. It’s going to be a multi-session project, I’m afraid. The computer had more Trojans than The Iliad. Haha… Homer humor. Uh, anyway, I always enjoy spending time with him (Papa, not Homer), so that’ll be no problem. I warned him that I’ll need to have another day when I feel well enough to actually work on the computer again, but I think I’ll have a lot of those coming up.

Today Papa explained to me the significance of the model trains he has on display. He’s always had model trains, but I can’t say I remember ever talking to him about them in real detail. Dad and I had built a model railroad town when I was a kid (it was awesome, there was a mountain with a mine shaft… Dad did most the work, I mostly just shocked myself a lot when he wasn’t looking), so Papa and I must’ve talked about the hobby at some point. But this was more personal. He told me that he’d ridden most of the real trains of which he’d constructed model versions, and that each one had a story from some major point in his life. For instance, riding from New Orleans to Boston to report for duty in World War II. It was special.

Then I came home and took a nap, because I hadn’t slept last night. We had plans to go play trivia tonight, which we have not done in quite some time, and I always find that I can think better when I’m not sleep deprived. But when I woke up, everything hurt–my head, my stomach, my body. I didn’t feel up to playing trivia, which was a huge bummer. I don’t know what the deal is, but I’ll chalk it up to my body getting one more, final miserable and mysterious blech in before I’m done with chemo. It’s fine, body, just get it out of your (my) system by Friday, because starting that day, I will not be cutting you anymore slack.

–Reid.



Tweet: And I’m Still Tired! (Four Days To Go!)
Monday May 09th 2011, 10:15 pm
Filed under: Leukemia, Tweet Tweet

FOUR days ’til I’m off! Slept unnaturally late. Working theory is that my body read the memo wrong, went into next week’s hibernation early.



I’m Not Crossing The Finish Line Alone (FIVE days!)
Sunday May 08th 2011, 11:46 pm
Filed under: Family, Friends, Leukemia

FIVE days! Well… FOUR at this hour. It was FIVE during the day, but this day is over. Wait, there are still… ugh, now I’m all confused. Let’s just say no more chemo this FRIDAY!!

One thing I’m not confused about is that I’m definitely not crossing the finish line alone. Both beating cancer and enduring chemo have been team efforts. A team without whom I wouldn’t still be in the race. This team is made up of many people, including my doctors, my friends, and an absolutely astonishing extended network of well-wishers. Every part of the team is critical. But at its core, this team is held together by, is most reliant on, and functions at all because of my family.

I’ll have a lot to say about all the people I want to thank over the coming days and weeks and months, but due to the alignment of the planets, there’s one person I need to single out tonight.

Mom, without you, I wouldn’t even know what a finish line was, let alone where it was. Over the past three-and-a-half years, you have been my coach, my fan, and my teammate. You’ve kept me focused on what’s been important, you’ve never stopped believing in me, and you’ve encouraged me–even when I didn’t want encouraging. You’ve even carried me when I couldn’t go on under my own power.

You’ve also been my friend. You’ve been someone I can talk to about anything. Whether it’s about my health or geopolitics or a cool new toy, I always feel like I can come to you and speak my mind openly and honestly, and that I’ll get the same treatment from you in return. We’ve laughed together, we’ve cried together, and now we’re going to cross the finish line together. This is not just my victory–this is our victory. I don’t think I can ever thank you enough for getting me here.

Happy Mother’s Day.

Love,
–Reid.



Tweet: Bummer(s)! (Six Days To Go!)
Saturday May 07th 2011, 9:10 pm
Filed under: Leukemia, Tweet Tweet

Six days of chemo to go! I was too sick today to be in the fedora fashion show to benefit kids with cancer. Huge bummer for so many reasons.



Fedoras, My Final Friday, and Seven Days To Go!
Friday May 06th 2011, 10:25 pm
Filed under: Leukemia

Today is my final Friday taking chemo, hopefully ever, for the rest of eternity or the rest of my life, whichever comes second. That puts me at seven days to go until I’m done with my chemotherapy treatment altogether! Next Friday, I will almost certainly–99% (16 kph)–still feel chemo’d from next Wednesday’s methotrexate, but I won’t be taking any chemo, and that is going to be awesome. And amazing. Awesomazing.

Tomorrow I will be modeling in a fedora fashion show. Yes, such a thing exists, and yes, I’m really going to be in it.

I first developed a proclivity for wearing hats during my stay in the hospital, during which all the hair atop my head fell out several times. I decided to wear the hats far less as a fashion statement or a way to hide my baldness (I had a great supervillain look going, after all) than as a way to keep my hairless head warm. When my hair grew back, I decided I still liked wearing hats, and we’ve had a good relationship ever since.

Imagine my surprise when I was told that since I wear fedoras so well, my head just must appear in tomorrow’s show.

Actually, that was a baldfaced (hah, hah) lie. The best Child Life Specialist anywhere, Tommi McHugh from Children’s Hospital, got me involved with the show. Tommi knows about my love for both hats and kids, and my equally strong disdain for cancer. The show itself is being put on by Dani’s Foundation, a great organization that raises both money and awareness for pediatric sarcomas. I don’t think they’ve ever seen my head, but I do believe they are aware that it is very big.

–Reid.



Tweet: Eight Days To Go! (countdownar, v., “to countdown”)
Thursday May 05th 2011, 9:05 pm
Filed under: Leukemia, Tweet Tweet

Today may be Cinco de Mayo (it is), but it’s also ¡Ocho Días! ’til the end! At about this time next week, I will take my last dose of chemo!