Fast Times at KU Med

Wow, that smile looks forced.

I've been in and out of the hospital this past month, but mostly in. The remission protocol they used (COG) lasted for 29 days. Initially, I got the chemos: Vincristine through IV, PEG-Asparaginase through muscle (something I have a lot of), and cytarabine through the spine. For the rest of the week I'd just chill out on other medications, while the chemotherapy does its work. I've had vincristine plenty of times before, just not at the same dosage repeatedly. I think I've had asparaginase before, but in a different form, called L-Asparaginase. With the PEG, since I have so much muscle, they had to get me where I was most meaty. Yeah that's right my hindparts. I've also had chemotherapy in the spine before, and it's the worst. I've such bad headaches from these I couldn't move my neck. I'd have to turn at the waist to see something. The funny thing about intrathecal treatments is that caffiene, among other things, works the best to thwart the side-effects, even better than tylenol. This time around they weren't too bad, but I still had headaches.

The other medications I was taking were just anti-fungal, anti-viral, anti-bacterial, vitamins to curb the neuropathy, and prednisone. Ahh, prednisone, the catabolic steroid that makes your face all poofy.

The chemo worked pretty hard pretty fast, and I had trouble healing at first, but towards the end of the protocol, I was doing fine. It sucked though, because I was unable to heal mouth sores, and I had some bowel problems that involved blood. Other than that, thngs were going pretty smoothly.

In a twisted way, the time I relaspsed was good, because it was during the school transitional period. I had just moved into my new place that was close so to campus and I had my classes all lined up. I was set. Fortunately, I was able to drop classes, notify professors that I wasn't going to be around, and notify financial aid before tuition deadline. This was all the unimportant stuff. What was really cool is that I was able to catch people before they left. Having visitors really helped me take my mind off what was going on and be human - enjoying company and having fun. Thanks to everyone that continues to pray and think about me. I can't defeat this cancer thing alone. I need all the help that I can get!

I didn't try to ask for much, but some sweet visitors brought me some sweet food. I mean if I'm going to be cooped up in KC for a month, gimme dat Barbeque! Regrettably, I paid for it later in the bathroom (remember those bowel problems I was talking about earlier). Let's just say it was worth it- it hurt so good!

My days here were pretty regimented. I'd wake up at 4 a.m. (you never get good sleep in the hospital), do some Active-Isolated stretching, then at 5 a.m. I'd grab my IPod and IV pole and explore KU Med. At first it was me just getting lost. There's a lot of bridges here that connect to research departments and classrooms on several floors. I eventually found a route that was the coolest to walk. As time went on though, my walks got slower and slower. I was basically speedwalking in the beginning, minus the sexy hip movements professionals do. Now that I have some bone pain, I'm not much walking anymore. There were some interesting finds in the random hallways though. I found the sequence of Doctor and Nurse graduating class photos dating back to 1906. For me, it was really cool to see the progression of mustaches. I even saw a jherry curl, all wet and delicious.

After my walks I'd order breakfast, which usually consisted of biscuits and gravy. KU Med has really good food for hospital food. Even though I know the menu backwards and forwards now, I still wouldn't mind some of the stuff at home, namely biscuits and gravy.

I also drew a lot, surfed the net, and played SimCity 4 (a good time waster). I also had a some good donated reading material. At the start of this protocol, I'd spend the evenings watching the olympics. Swimming was nuts. Michael Phelps was nuts. You always gotta watch gymnastics. And then there's Track & Field! I kind of spoiled the network coverage of T&F because I'd look at the results that morning, and feel obligated to watch the races at night, but it was worth it. Usain Bolt was refreshing upcoming star. Kenensia Bekele was inhuman, and so was the Men's Marathon - lightning fast! There was one gold medalist that went under the radar though, but when I heard his story and further researched him, it gave me more confidence for the days ahead. Maarten van der Weijden from the Netherlands won the 10km Open Water Swim. He had leukemia and had a stem cell transplant around the same age as I am now. Seven years later - Olympic Gold. After the sweatness that is the Olympics was over, late night television became plagued with the Democratic and Republican national conventions. Seriously though, those crazed people cannot possibly be having that good of a time. Oh well, I guess it's best to be informed, but sometimes I wish I wasn't.

The nursing staff and aides are pretty cool here. I hope I wasn't too much of a nusance for them, but they are a fun group. I've gotten to know some of them pretty well. One of my nurses was a 2-time Lymphoma survivor - five years out. A lot of the aides are nursing students my age, so they're easy to talk to and nice.

I was able to be discharged a couple of times (for good behavior), which was good, because I could recharge with my family at my apartment. This past week though, we commuted everyday from Lawrence to the Outpatient cancer center in Westwood. On day 29, which was last Friday, I got my last spinal chemo and later that afternoon, the results from a bone marrow biopsy. Bone marrow biospies are the only way they can acurately check the amount of cancerous leukemic blasts. So basically, I was there to see if the past month's chemo put me back into remission. Dr. Abhyankar told me I had dropped from 65% blasts to 6%. You need it to be 4-5% to be ready for transplant. I found out later that the 6% was really 2%; ready for transplant!! * (edit: some verification from the doctor today said that I was in 'dormant remission, but not remission) I had a slight hiccup though that afternoon, when we were waiting for the results. I started having a stitch under my right rib, that made my breathing more shallow, but when I laid down, it resolved. I told the medical staff and Julie the NP thought it might be gas. At that point I was feeling really ridiculous, taking up this room just for some gas? C'mon Darren get you head out your.... Anyways, the combination of medications to releave gas didn't work, so I got a chest X-Ray. The results showed that I had some nodules in that lung that Abhyankar thought was probably a fungal infection, but just to be sure, he needed a CT Scan. Well, the CT Scanner at the outpatient clinic was done for the day, because it was like 7pm at that point, so I got readmitted to the Hospital that night for testing. I kinda wished it would've been gas.

From the CT Scan they knew that the infection was invasive aspergillosis. The fungus had burrowed through 4 pen-tip size parts in my lung. The pain I was feeling is from the air escaping through those holes. Luckily for me, the air was going towards the trachea, because if it was going away from center, there is a high risk of a lung collapsing. Phew! Well I was ready for transplant, but they have to get rid of the infection before I do it, because if they wipe out all my bone marrow, the infection would take over my whole body. In the comicbook world, I'd become AspergillosisMan, spewing fungus into jokers lungs who deserve it! I think I'll pass on that one though and get on with the program.

They wanted to make sure and secure that whole chestal-region-area STAT. So I just got done ordering my breakfast, consisting of biscuits and gravy, eggs, sausage, and all that Delicious stuff, when Dr. Ganguly barges in and tells me I can't eat or drink because I have to do a bronchoscopy. Damn, and it's scheduled at 11:30.

My mom devoured my meal, as I sat gently sobbing. Alone.

With the bronchoscopy, they had me first numb my mouth by smoking some substance. Then they knocked me out and told me I was done. Later, I still had to get some tests done. They wanted to make sure I wasn't leaking out my esophogus. So the dude says, "here take this cup of water". I gladly do so because I'm dehydrated as hell. "I want you to take a big gulp and on the count of 3, swallow". Right when that liquid touched my tongue I knew this guy played me. It tasted like an extremely broken down version of robutussin, disgusting. I had to do that 2 more times, then the same with some equally-nasty milky looking stuff. I was finally able to eat at 3, which is not bad because I'm glad they got all the tests done fast. It's just that I got tricked into thinking that stuff was water. Later on that night, I developed bone pain in my knees, shins and ankles, so they gave me morphine and oxycodone. By morning I felt soooo lousy. I was dehydrated, and I had all that sedation medication and pain medication in me, not to mention that special water.

So that's what's happening now. I'm chillin back at KU Med. I can hardly walk because the bone pain. It's really hard to concentrate on this blog with the pain medications I'm on. Hopefully this infections ends soon, so I can get this cord blood transfusion over with. It's gonna be the hardest thing I'll probably ever do.
P.S. Thank you Dale for helping me take photos last night. I got bored and had to do this though. I think you're taking your facial hair in the wrong direction. YOU COULD LOOK LIKE TOM SELLECK MAN!
no but seriously thanks for chillin' with me last night.