I got out of the hospital late yesterday afternoon, which meant I only ended up really spending one night in the hospital.

The poem I wrote yesterday was written to vent my frustration about feeling very trapped lately. It’s been an overwhelming feeling that being in the hospital only made worse. Being in the hospital shone a big spotlight on the feeling that my Leukemia and the corresponding chemotherapy are holding me and my future hostage.

That said, TCH is a great place, and I know that everyone there really does have my best interests at heart. I even consider many of the people there to be good friends.

More later. Thanks for your concern; please don’t be concerned.

–Reid.

At first you’re just going to be there one night while they “observe” you overnight in the hospital.

Then while you’re packing up all of your things the next morning, they say to you, “You’ve got a strange bug, weird, unexpected, but thoroughly checked we have detected. We’ll need just one more day to figure it out! We’ll release you tomorrow, you’ve no reason to doubt!” And hey, that’s okay, because it’s only two days in the hospital.

On day three, they chase you down the stairs out front: “So glad we caught you before you got to your car. We know we said ‘go,’ but oh! here we are! another infection’s evaded detection.” They sound so genuine and nice, and hey, what’s one more night? Of course you agree to stay a third night in the hospital.

Then it’s: “A disease we thought dead!”, “Oh let me see!”, “We’ll have to order the antidote from the CDC!” And that’s when you notice you’ve spent a week in the hospital.

Oh, but watch out, because before you know, you’re sure you’ll get better and be allowed to go. Your family awaits, so do your dog and your cat and your fish and your gerbil. What’s that? Oh my, it’s been a month in the hospital.

Then, one day, you look in the mirror and wonder when you went gray. You can almost remember why you came here at first. But no, it’s gone. There may have been life before, but if there was, you certainly can’t remember. All that you know is your life in the hospital.

What a long day. Oy.

We arrived at the hospital at 8 AM. Although I’m on a two week break from chemo, I needed to get some tests run to determine the next steps of my cancer treatment.

Now, I hate to badmouth anyone in the hospital because most people there are absolutely wonderful and a lot of them are my friends… buuuut when I’m feeling crappy from my awful chemo that just ended and I go in for an appointment at 8 AM, and I am most definitely the first of zero people to check in, it’s tough to feign happiness when I’m finally called back for the CT scan of my belly at 11 AM.

To top it off, for this CT scan, I had to lie squarely on the radiation burn on my back for quite a long time. We finally finished up and headed upstairs to the Oncology Clinic. Dr. Garrington showed Mom and I the CT scans from today as compared to similar scans in April. The “fluid pockets” he’s been worried about are significantly smaller enough that, in two weeks, I’ll be able to start a new phase of chemo that we’ve put off for quite a long time.

These fluid pockets were formed when I had hemorrhagic pancreatitis back in January. Pockets of fluid that sealed up and prevented any movement past my stomach and eventually led to massive internal bleeding. The bleeding was stopped by some amazing, life-saving doctors, but the fluid pockets kept me off of food or drink (even ice and water) for months. Once they started shrinking, I got to eat and drink again, but Dr. G remained wary of this phase of chemo I’d missed. He remained hopeful I could do it one day, though.

That day is in two weeks. Basically, an ever-increasing dose of Methotrexate will be put into my brain and spinal fluid every 10 days for eight weeks. Each injection should wash out of the body (my body) within 48 hours. The long-standing concern still stands: those fluid-filled pockets could potentially cause the Methotrexate to remain in my body for longer than 48 hours, which could be toxic and would be cause to use an antidote. Seriously: an antidote.

I’m a little scared to be taking something that can become so toxic that it requires an antidote, but I’ll do what I gotta do. Dr. G then went on to explain that the next treatment will be a second Delayed Intensification; an exact copy of the chemo I got in July and August that made me re-evaluate my understanding of pain. Oh, and my cranial chemo radiation will start on the first day of the second phase of that chemo. Just because someone, somewhere, invented this course of chemo drugs and also happened to be a sadist.

Finally, “Maintenance” comes up. Maintenance is the light at the end of the tunnel. Maintenance is the tunnel to the end of my cancer. During Maintenance, I only come in to Clinic once a month.

Sweet.

It lasts three years.

But still… sweet. Right?

There was a little confusion over how long my chemotherapy was supposed to last. I had been under the impression that the “three and a half years” of treatment started from day one. Sure, we’ve taken a few side trips, what with the pancreatitis and the psychosis. But the way he’s talking about it, I count four and a half years. Okay. Again, I’ll do what I need to do to be healthy. But… he’s also talking about me needing to stay in Denver until at least February. Now, in the long run, yeah, I’m willing to do what needs to be done. But in the short term, this blows.

Before I could complain too, too much, I was told I have the classic warning signs of someone who needed a blood transfusion: I was very pale, my blood count was extremely low (forget the 750 or 1000 of a few weeks ago, today my ANC was 37… seriously), and I was speaking with a Transylvanian accent. In fact, based on some mathematical formula, I could technically receive “three units”. My nurses cautioned me that three units might make me explode though, and while exploding sounded like a fun time, it had already been a longish day, so I settled on two units.

Over the course of the next four hours, I got the two units of blood. Finally done with my long hospital day at about 5pm and having totally missed the DNCC events I wanted to go to (Al Franken for Senate!), I was darn ready to get home. First, I needed a quick pit-stop. Pit-stop revelation (medium: pee): turns out my body had refused the transfusions and was destroying red blood cells left and right. Apparently, the more transfusions you get, the higher chance there is for building up antigens and antibodies and antipastos to other people’s blood, even if it’s the right type. But when did I get so many transfusions?

Of course! When I was losing all of my blood during my pancreatitis debacle.

Needless to say, the dark crimson pee scarred the bejeebies out of my doctors and nurses so much that I’m staying overnight at the hospital for the first time since May 7. I have to admit, as crazy as it may sound (even to me), there have been days that I missed staying the hospital. Tonight, though, I am not exactly thrilled to be here.

While they may say I’m “under observation,” they’re also actively trying to flush this toxic blood out of my body by way of making me have to pee every twenty minutes. Isn’t this kind of torture banned by the Geneva Convention?! They tire you out, give you a comfy bed and some sleeping pills, and then they hook you up to an IV that gives you 250 mL/hr of fluid. It’s sleep deprivation, that’s what it is.

I think this is even banned at Guantanamo.

–Reid.

P.S. I thought Teddy and Michelle were great tonight. And those adorable girls might win this thing for Obama.

Although I’ve been off of it for a few days, the legacy of Ara-C lingers on in my body. I feel just as sick as I’ve felt since getting out of the hospital. My digestive system is fighting me from every which-way. I’m hoping to feel much better soon, as I have the next two weeks off from chemo.

If I’m up to it, I’ll be able to participate in a lot of DNC events this week in Denver, culminating in seeing Barack Obama’s acceptance speech at Mile High Stadium on Thursday. Al Gore will also be speaking there and so will our new VP pick Joe Biden.

I couldn’t be happier with the choice of Joe Biden. He brings so much to the ticket, from his experience as an international diplomat, to his big mouth that will fight back against some of the ridiculous things that have been said about Obama recently. I’m very happy about the selection.

I had a great traditional South African dinner last night prepared by my non-traditional African-American friend Elan (he is white). The food was de-licious. It was much more like American food than the Ethiopian food I recently tried, but I’m very excited about continuing my taste tour around the African continent. Elan is a great chef… it was truly a great meal.

Time to watch the first appearance of of Obama/Biden! Hurray!

–Reid.

EDIT: I feel more confident that we can win this thing than I did even yesterday. Suh-weet.

28 years ago you built a garden, and for 28 years you have nurtured that garden and watched it grow beautiful and strong. The garden, the envy of so many other gardens, has also drawn the attention of many a mole, a drought, and a storm.

This year, a hideous storm, more dark and vile than any your garden had ever weathered before, rolled onto the horizon. Having withstood countless storms that had overwhelmed other gardens over the years, your garden just laughed at the storm. “I’m stronger than any wind, rain, or hail,” that garden taunted, “do your worst.”

The storm did not reply. Instead, the skies darkened, an early night casting itself over the plains. Lightning and thunder heralded the presence of the clouds and rain. Still, the storm said nothing.

A flash of light. Lightning struck your biggest sunflower, knocking it to the ground. A rumble from the earth and a crackle from the air shook the garden. The storm smiled to itself. Another awesome burst of light and the furies were unleashed; a torrent unlike anything your garden had ever imagined, and surely unlike anything it had ever before survived, poured down fiercely.

“I tore down the Hanging Gardens of Babylon,” the storm cackled with pride, “what chance do you stand, little garden?”. But no matter how hard it rained down on that garden, no matter how hard the storm blew its winds, it could not harm your garden.

Hours of rain passed.

Days of snow, weeks of tornadoes, and months of hail all blew away. Finally, after years of trying to destroy your garden, the storm, its voice reduced to a hoarse wail, screeched: “As a little squall, it was I who chased Adam and Eve from Eden! You are nothing!”

But your garden, glistening as the sun’s rays broke through the storm’s weakening clouds, couldn’t help but laugh at the storm, “You are wrong, I am something.”

The storm clawed at the air as it was pulled back over the mountains, trying desperately to keep itself together. “What?” it hissed.

“I am loved.”

The storm stopped fighting as it noticed your sunflower, standing taller and stronger than ever before, in the center of your garden. In its last moments as a storm, it considered why you would help the plant in the worst of conditions that it had created. It was baffled at why you would waste your time. It gave one final cry as it realized it would never find out, its clouds rolling apart into the wondrous blue sky.

Mom, Dad: your garden wants to thank you for watering, feeding, and protecting your flowers for all of these years. Your sunflower, in particular, feels an overwhelming sense of gratitude for helping it weather storm after storm, no matter how dark and vile the skies may have been… or will be.

Happy Anniversary to two of the most wonderful gardeners I know.

–Reid, your Sonflower.

Based on my complaints, Rachel, my nurse, wanted to see me in the Oncology Clinic today. So here I am in the Oncology Clinic getting fluids and painkillers and stuff. And I’ll be coming back tomorrow for some blood. All the tests they ran revealed that on paper I look great.

Despite that, Rachel and Janey, the PA who has taken very good care of me on a few recent visits, confirmed that it’s the Ara-C making me feel so cruddy. In fact, more specifically, it’s the super low dose of Ara-C that I’m on making me feel this cruddy. Janey told me that the little kids with other kinds of Leukemia get 3,000 mg per meter squared of Ara-C every 12 hours. Me, I get a mere 75 mg per meter squared every 24 hours. I don’t know anything about math, but that’s clearly big amount twice as often vs. small number half as often. Hearing that makes me feel like a real baby. An overly dramatic baby, if you read my last post.

Amy reminded me that last time she was here while I was still in the hospital, I was on Ara-C and it made me so miserable that I can’t even remember it. Which, unfortunately, I can’t really remember. But it’s been secondarily confirmed by my dad.

I’ve come up with this new slogan for Ara-C:

Ara-C: It makes you feel like crap!

I imagine it will increase sales dramatically.

–Reid.

5 am. this is the tenth time i’ve been up to pee since i went to “sleep” at 11:30 last night.

too hot. too cold. too hot. too cold. open a window. bundle up. turn on a fan. hide under the blankets. hot. cold. my body can’t make up its mind.

from the top of my game, to this. fevers. rashes. headaches. nausea. swollen organs that hurt like an s.o.b.. diarrhea. late night trips to the the e.r..

delayed intensification part 2. i feel sicker than i’ve felt outside of the hospital yet. i feel sicker than i have in a long time.

whether it’s the cytoxan i got at the clinic on monday or the ara-c (cytarabine) my mom has to inject me with every morning or both, i hate this game.

dad says as much as it sucks, this is how we know it’s all working.

so much pain all over. so much ache and hurt. i can almost feel my cells being ripped apart.

yeah, it’s working.

the cure makes me feel worse and worse and worse.

so when can i have the cure for the cure to my disease?

i’m tired of this damn burn on my back. it’s been eight months, go away already.

i’m tired of all of this. i feel weak and sad. my body is weak. it’s offensive, it’s abominable, it’s loathsome. it’s sick.

i don’t want to be sick anymore.

I felt absolutely fantastic as I waltzed into the hospital at 7:00 AM this morning. The feeling was a continuation of a weekend in which I felt better than I’ve felt in months. The mouth sores–now, once again thought to be from the chemo, not herpes (sorry Varisella Virus, I hope we’re still cool)–are gone. The aches, the pains: gone. In the past few days, I went to PT, I went to get ice cream, I saw Swing Vote, I ate delicious Ethiopian food for the first time with Big Sis and my cousins, and I even went to a birthday party.

And, yeah, my hair is falling out again as a result of Delayed Intensification Phase 1′s Doxorubicin. And, yeah, as opposed to when I was in the hospital, my beard was falling out, so I shaved it, leaving just the hipster-doofus (as my dad calls it) mustache and soul patch. And so, yeah, I look really silly. But who cares? I felt great.

So I was a little nervous to come in to the hospital today.

Don’t get me wrong. I wasn’t afraid of not passing counts again like last week. In fact, I was quite certain I’d make the grade today and be eligible for the seven hour chemo. But… after feeling so good, how could I knowingly roll the dice and potentially feel so crappy again? I mean, hell, I’d have to get six hours of fluid injections so I could pee out all the Cytoxan they’d just put in. CyTOXIN (thank you, I just made that up myself) can damage the kidneys and bladder, and probably a lot of other stuff. So, of course, they’ve gotta take it out as fast as they put it in. And I… well, jeeze, frankly I just liked feeling good.

But, of course I’m here. I’m at the hospital. And I passed counts (1950!). And I got the Cytoxan. And I’ve been peeing like a race horse (I’m under the impression that they pee a lot for some reason). And I’m going to get it injected into my brain (I think I may have left that detail out before). And it’s fine. It’s all fine. I just hope that sometime soon I feel as good as I’ve felt over the past few days, except not just for a few days. For forever.

That’s what this all comes down to: I hope. They can hit me with all kinds of chemo, they can knock me on my ass, they can radiate my head, but I remember now what it feels like to feel healthy. And I hope I can feel that way again soon.

–Reid.

Over the years, The Varicella Virus has never treated my family well:

-When my dad was a kid, he got shingles. His face is still scarred to this day, a la Harvey Dent.

-My mom had chickenpox as a child. Then she had it again as an adult, at which time it entered her body and covered all her internal organs. She nearly died and some guy stole her spotted x-rays from the hospital (seriously).

-To avoid getting chickenpox, Becca stayed with friends when Mom got “the pox” as an adult. Becca came home and got chickenpox anyway, despite Mom being in the hospital. The very house we live in later admitted, in a court of law, to being an accessory to the crime of passing on an annoying-if-not-deadly virus.

-I had chickenpox twice as a teenager. And now it seems, well… let’s just say it turns out that my mouth and throat sores might not, in fact, be from the chemo. Let’s just also say… I might, in fact, have oral herpes. How. About. That. This raises several questions. Such as: where did they come from? Who gave them to me? And, what is the capitol of North Dakota?

Unfortunately, in my immuno-compromised state, someone merely looking in my direction could have given me herpes. Someone who didn’t even have herpes, mind you. There is no certainty of this, but my sores have lasted long enough that the oncology docs have speculated that our friend Varicella might be to blame. As if that’s not terrible enough, in the words of one of the oncology docs, “it should be assumed that, as a chemo patient, the sores go from the mouth, down the throat, all the way through the digestive system, down to the anus”. The anus, ladies and gentlemen. My anus.

With that beautiful realization, I’ve been put on antibiotics that should help fight the maybe-virus off.

Damn well better.

–Reid, in a slightly embarrassed huff.

“Best of New York”
Peoples Improv Theater
Upcoming Events

Better Than the Machine: unLEVINed
Better Than the Machine’s newest sketch show, unLEVINed explores whale love, open mics, pigeon mating rituals, and homosexual relationships. For the first time in Better Than the Machine’s history, founding member Reid Levin has had no involvement in the show. But why? Find out in August at 11pm, only at the Peoples Improv Theater.
Friday, August 8
11:00 PM
$8