I'm Still Here

It has been MONTHS since my last post. That means there is a LOT of ground to cover. The bad part about that is that I can’t go into very good detail. It’s lost to history, but I’ll try to remember as best as possible.

Groundhogs Period

Rewind!!! That’s right! Now where were we? I think I was just getting out of going back to the hospital because of a fever. After that, I was in a routine of going to Dana-Farber 1-2 times a week to get blood and/or platelets.

At home, I was confined to my upstairs because my body was really banged up. I had been lying in a bed for 5 months, and mobility was not very good. So my upstairs was where I did everything, even eat. I started gaining strength slowly, by walking back and forth, up and down the hallway (how boring). I was doing some artwork and playing some videogames (something I didn’t really have too much time for when I was in school) and basically sitting around most of the time. The artwork I was doing was finishing up the collaboration and a project that was started last summer. After I finished the concept art, I kinda got burned out on it. I kinda got burned out on everything, but I’ll explain that later. I also routinely practiced some general basic perspective drawing.

I think I discussed how my feet would swell up a lot, so I was always trying to keep my legs elevated. I was on low dose Morphine, Lyrica, and Capsaicin cream to help with the pain and burning in my feet. Despite my feet, I gradually got more physically active. My parents and I would take really short walks outside in the freezing weather, when I felt up to it. Stairs were still a big issue for me. My parents would be on either side of me while I descended the stairs (which was much harder than climbing stairs, because balance). Sometimes I would ride our stationary bike. I read some comics and a couple of books. I just found things to do. I’m usually good at that. I still had pretty good enthusiasm.

By around the end of March I was going to Dana-Farber less frequently, just every other week. I think I also stopped going to the Psychiatrist. I remember telling her how all my days started feeling the same. I felt like I was in the movie Groundhogs day. I spent every day stuck in my house unless I went on a short walk in the cold/snow or went to Boston at Dana-Farber. I only saw my parents, but if we did go out in public, which was very rare, I’d mask up and glove up (I still do and this is before H1N1 swine flu craze). I just started losing interest in everything. It’s not like I haven’t felt this way before. When I first got sick, back in 2005, the initial intense treatment period was 6 months. Somewhere in there I hit a dark time. This time felt a little bit the same as back then. However, this time was a lot longer.

I had very few visitors during this time. My oldest brother Keith made yet another surprise appearance, because he was in between jobs. That was fun. I saw my cousins in Hartford. One of my best friends, Aaron also came by when he had time off from school in Boston.

My nails were falling off (I just had to add that in there because I took the picture back then).

Oh and I was in this newspaper: St. Baldrick's Article - correction, I have never ran a 4:20 mile, my PR is 4:27

(Good job Darren! Sweet transitions, man my writing is FRESH!)

Transition

Somewhere in May I finally started getting over the “Wow, this really sucks”-phase. I started walking every morning without the assistance of my parents. At first it was ¾ mile, and then 1.5 miles; now I go between 4 and 4.5 miles every morning, rain or shine. I could go farther, but the runner in me already says that walking is ridiculous. Walking 5 miles or more is ridiculous for me. Sometimes I’ll also bike later on in the day. I told Dr. Antin that I’d be at least run-walking by the end of the summer. That hasn’t happened yet. My excuses are that I my feet are still very numb from the ball to the toes and that my flexibility is bad. And now I got this man-purse again, but I’ll talk about that later.

When my brother Kris graduated grad school and came home, I went out a little more. We went to a couple of movie matinees. The coolest thing we did was go to the Norman Rockwell Museum, which isn’t too far north of Springfield, MA. Really good museum! He’s inspired a lot of artists/illustrators I like. The funny thing is though that my dad called the place and asked what day there wasn’t going to be a lot of people. So we show up they day we told us, and we see like 5 school buses in the parking lot. Awesome! Just the people I want to be around if I don’t want to get sick – kids!

I started going to Boston less. Every other week turned into once a month. My blood type changed from B+ to the dominant cord donor’s: A+. It’s kind of weird having a new blood type. I also didn’t need any more transfusions; all my counts are still slowly rising. There is one count in particular that has been rising rather steadily, without decreasing, these past 3.5 years I’ve been dealing with cancer. Iron. With each blood transfusion I have gotten over the years, I retained a little Iron that has no natural way of getting out my body. My Ferritin levels were around 5000, 10x what would be considered acceptable. As a part of the iron retention study I’m involved in, they do MRIs. The most recent one I got showed that the Iron was retained mostly in my Liver and Skin. Dr. Antin thought this was good, because there wasn’t any in my Heart, but I still needed to get the Iron out somehow. The big problem, as evidenced from CT Scans, is that there is still something in my right lung. He believes it’s still a fungus, and when you start moving Iron around, it attracts fungus. He liked how it

was encapsulated in the same spot, while very slowly deteriorating from the Voriconazole (VFend – anti-fungal) I still take. So there are 3 ways to get the Iron out; by IV with Desferal, a powder you mix in a drink (I forgot the name), or phlebotomy (or what I like to call the ‘ol blood-letting, we joked around about using leaches). The first two had the potential of inciting the fungus in my lung, while phlebotomy was the safest. All I had to do is give blood, but my Hematocrit isn’t high enough to do that yet (I can’t really donate blood anymore because of my history, but it’s the same process). So there was the dilemma, and we decided to just wait it out.

Getting Delicious ‘Wit it

So I continued to get hungry and motivated to do things again, instead of looking out my window, watching the world go on without me. I started getting more inspired to do some illustrations. I even decided to do a special one to commemorate day 250 which coincided with an appointment. My social worker Tammy bugged me every time I went to clinic to do some sort of caricature of Dr. Antin. I decided to include all the people I saw most when I went to Dana-Farber. I also wanted to poke fun at Dr. Antin’s infamous phrase for other patients, “I don’t think that is such a good idea.” Although he hasn’t really said that to me, because I already know what I can and cannot do, I still thought it might be funny for him. The idea to actually execute the illustration didn’t actually occur until like 3 days before I had to get it done. So I spent part of one day planning the concept and the composition. I spent the next 2 days doing it. I framed it and gave it to him for that visit. He liked it a lot and put it in his office. Consequently, the other players in the picture wanted a copy too.

That visit was special in some other ways too. The visit started off with a CT scan, to see the progress in my lung. The scan result showed that, the fungus or whatever it was, was shrinking. Dr. Antin talked with the infectious disease doctors and believed it was alright to start getting rid of the Iron in my system. I decided to do the Desferal IVoption until my Hematocrit was high enough that I could give blood. The Desferal runs 24/7; so that means I got this darned man-purse again (alluding back to those Penicillin days).

My counts were high as well – the highest they have been in, well 4 years. My white blood count was 4.8, which was the highest I’ve seen since I started following it. While on maintenance chemo (while at school), I was always kept at 2 to 2.5. Normal range is 4.3 to 10.8.

The other special part of the visit is that it was videotaped. The Brigham & Women’s/Dana-Farber joint communications program was doing a video about cord blood stem cell transplants. The aim of the video was to try and get pregnant mothers to donate their baby’s umbilical cords for stem cell collection at birth. Mike, who was making the video, taped the whole process, from collecting the umbilical cord at birth, to extraction and storage of the stem cells. I was the final piece to the video. They needed a face of someone who’s benefitted from the process. After my doctors visit, my dad and I were interviewed about our experience. I briefly described my whole ordeal with Leukemia/Lymphoma, starting with that horrible summer, when we moved up here to Massachusetts from Kansas City. It reminded me of the decline of my health, starting probably in March 2005, towards the end of my senior year of high school. I think I might do some sort of Blog entry of my cancer experience before I relapsed and revisit some of those times.

“Here and Now” by Luther Vandross

I’m just playing. I’m not going to talk about the legend Luther Vandross and his Grammy award-winning song, but about what I have been doing as of late. After I did that pseudo-comic book cover for Dr. Antin, it spurred some other ideas I had for stuff. That process immediately got hi-jacked when my aunt and her grandson came to visit. Ah, the joys of entertaining a 15 year old boy. I usually don’t use Photoshop to modify pictures, but it kept him happy, so what the heck. Here are some of the things I did for him.

After they left I finally did some pieces for myself. Here are some: The Flash v. Captain Cold, and Cadillacs & Dinosaurs.

I still religiously do my walks in the morning. Now I have company to do them with, since my brother Kris is living back home as of last weekend. I have another face to look at now. I’ve started an online course to get me ready for my return to school and I even started formally learning my mom’s language like I said I would when I first started this blog. In order to become kick-ass, I am also practicing my draftsmanship again.

The next big thing for me is this Jimmy Fund Radio-Telethon I am doing August 28. It’s a cancer fundraiser, with doctors, patients, caregivers, baseball players, and some high profile celebrities. I guess the Red Sox are playing the Bluejays that day, so tune if you are in the area. I’m supposed to talk with Dr. Antin.

That’s about it for me. My friends back in Lawrence, KS are doing another Light the Night fundraiser for the Leukemia & Lymphoma Society. Sadly, I won’t be able to attend yet again, because it’s too early in October for my year mark, which is Halloween. Check it OUT!

It’s day 285 since my transplant, and 1360 days since I heard, “you have cancer”. I am still here! Last Friday, August 7^th, was the anniversary of my relapse. It was a different time a year ago. I just moved into a new apartment by myself. I was about to go to a woodturning workshop I got a scholarship for in Aspen, CO. The Fall semester was also about to start. I went in for a routine blood draw, and BAM, relapse – let the fun begin. I was in bad shape. I remember the words vividly, “statistically, you have a 10% chance” from Dr. McGuirk’s mouth. Back at KU Med, waking up every morning at 4:30 to walk and get lost inside the halls of that complex before people started trickling in. The donor search. My lung collapsing. The Hope Lodge and my non-stop RV trip up here to Massachusetts. And finally, the fun times I hardly remember at Brigham & Women’s Hospital in Boston.

I am still here.