Why are snickers bars so delicious?

Why are they? It must be the nougat.

What have I done since last month? Not as much as I would have liked, but I guess that’s the case with everyone. I did do some fun stuff though.

Cord Blood Donation

The following is the link to the video the hospital did about cord blood donation that I detailed in the last post. I think it was done very well (good job Mike).

Giving Birth to Hope from BWH Public Affairs on Vimeo.

Jimmy Fund Radio-Telethon

So I participated in the Jimmy FundRadio-Telethon fundraiser. It took place over two days, Aug. 27-28. My interview was scheduled at 2:30 or 3pm on the 28^th. It was on NESN, which you get if you have cable up here in New England and the Boston sports radio station WEEI. I watched the first day on TV. I thought I went through some bad stuff with cancer the past 4 years, but you quickly get humbled listening to some of the stories of others on the broadcast. The ones that didn’t make it and are represented by family members always get you, but one police officer got to me. When he was a patient at Dana-Farber, he ran a marathon with an IV feeding tube. I mean I used to be kind of elitist about marathons, thinking that if and when I ran one, I wanted to run it fast. I used to run enough, that just completing a marathon was a given. But that police officer’s story was truly a warrior story. There were other guests that

got to me too, but not in the same way. The combined Frank Caliendo/Donald Trump interview was funny and it was surprising the amount of high profile celebrities they had come in or come on the phone. This all made me pretty nervous when it was my turn to give my interview the following day.

On the day of the interview, there was a shuttle that ran from Dana-Farber to Fenway Park where the whole thing was being broadcasted from. Dr. Antin barely made the shuttle. When we got there we met with Bill, who hosted us. We were immediately queued up. The interview before us was Red Sox pitcher Jonathan Papelbon. A lady handed us a ball to get signed by him. She was like, “Here’s a ball and pen. Ask Papelbon if he’ll sign it!” I was like who?

Why? Let me explain (and the rant begins).

I don’t really follow baseball. I know it’s America’s pastime. Whatever. I come from KC. What team do we have? The Royals. That should be enough of an explanation of why I don’t follow baseball. (But that still doesn’t explain why I follow basketball. Jayhawks baby!)

“Yo Darren, you wanna hit up this Royals game with us?”

“Nah man, sorry. If I’m gonna take a nap, I can do it at home.” (yeah I know ouch, it burns!)

Anyway, so we got the ball signed and it was our turn to interview. It was on the Big Show with Glenn Ordway. The two other interviewers were Pete Sheppard and former Red Sox player, Lou Merloni. Here, you can see the interview for yourself (it's embarrassing):

There are a couple of things I’d like to clarify. The shout-out to 6A is the hospital unit I had my transplant at. And then there is the ‘two Darrens’ part. Although it sounded weird, what I meant by that is I try hard not to have cancer change the person I was before I got sick, despite the fact that I can’t deny the permanent stamp cancer has had and will have on my life. Lastly, I have no clue where the whole comic book thing came from. I never mentioned it in the questionnaire I submitted before the interview. I said I was from Overland Park, KS too. Not Lawrence (blah,blah,blah, like anyone really cares about these details but me).

After the interview we were invited to see the Red Sox v. Blue Jays game that evening from the WEEI suite, but we declined. It wouldn’t be a good idea to see the game with that many people and with the state of my health right now. Plus, have you ever tried to get out of Boston during high traffic? It is parking lot until you pass Worchester.

Bill, our host, knew we couldn’t see the game so he generously took us on the field and showed us around a bit, even though he was pretty busy facilitating with the telethon. We also went atop the ‘Green Monstah’ (Boston for green monster), the area around the scoreboard at Fenway. The two-day event raised over $4.55 million, which was down about $3k from last year. Still it was pretty successful in my book, especially considering the bad economy. Go cancer research!

Before leaving Boston, we went back to Brigham and Women’s Hospital to the transplant unit 6A to visit with Kathy and the nursing staff. I saw Dr.Peter G again, who was making rounds on the floor again coincidentally. Of the blurry memories I had during the hospital days at BWH, he was a real cool doctor. One of the most surprised to see me was Dr. Ho, who was like, “Darren? Darren! Holy-“

Desferal and the Kidneys

So if you noticed in the video, I was sporting the man-purse containing the Desferal medication. It is an iron-chelator, meaning it binds with the excess iron in the body and allows you to remove it through ‘natural’ means (pee). I specifically had iron overload in my liver and skin, due to all the blood transfusions I’ve had the past 4 years.

Well, I had my monthly visit with the nurse practitioner, Julie, this time instead of Dr. Antin. My bloodwork came back slightly lower than the last, but remained pretty steady, except for the Creatinine. It was 1.4 – a little high, which meant something was bothering my kidneys. The only medication that I have really changed for a long time was the Desferal, so she believed that was probably the culprit. The only catch was that Desferal isn’t really known to elevate Creatinine levels. So she and Dr. Armand advised me to drink more.

When someone advises you to drink more, it is a good idea to monitor how much water you drink. That usually works. Common sense, right? Smartly enough, I decided I would measure how much I drank by the judgment I had on how clear my pee was. Go me.

Later that week I went to the outpatient clinic at Baystate Medical in Springfield to recheck my Creatinine level. It went up 1.7! This made my parents very happy with me (I wish). I had to stop the Desferal and return to Boston the following Monday to meet with Julie again. I also had to get an ultrasound of my kidneys and bladder and meet with a renal doctor.

My Creatinine level went back to 1.4, but the renal doctor, Dr. Humphreys was still a little confused why Desferal would be the agent that was elevating the level. In his and his colleagues’ experience, Desferal has never done this, but he found a study of a stem cell transplant patient that this did happen to. So in other words, my case was pretty rare. So they stopped the medication for now.

On the bright side, my bloodwork showed that my CD4 (cluster of differentiation 4) count was normal. Julie said that in her experience, only 10% of all stem cell transplant patients have a level this high at close to a year mark. What’s its significance? Well the CD4 and the IgG (Immunoglobin G) levels are markers on how well the immunizations transplant patients have to get will take. For example, if I was to get re-vaccinated right after I got out of the hospital, they would be a waste because my body wouldn’t take them.

At least no more man-purse for now.

Eye of the Tiger

As you’ve read, I have been religiously walking 4+ miles every morning. I’m kinda excited because it’s almost that time of the year when the leaves change. It’s my favorite part about this place. A couple of weeks ago, the first signs of the colorblast leaf visual overload were forming on one of my walk routes.

No place in KC looks this cool in the fall. The best places I’ve seen in KC are Shawnee Mission Park or Corporate Woods (I used to run through there a lot). Sadly, they don’t even compare. There might be some cool places on the Missouri side too that I don’t know about, but I still doubt they look as nice as New England in the fall. The drive through Western Massachusetts to Boston for my next doctor's visit will be a treat for my eyes.

I’ve started walk-jogging as well. So during some of my walks, I will intermittently throw short spans of jogging in there. For you runners, it’s the weakest version of a Fartlek possible. It’s ridiculous, but you have to start, or in my case, re-start somewhere. I wear a heart rate monitor when I go, and mine gets up pretty high – in the low 180s. Pretty ridiculous. Granted, my hematocrit level is 27. Normal men’s are 40-50, and women’s 36-44(which is sometimes lower due to women’s monthly biological functions). I should start EPO doping like Marion Jones and get my hematocrit level up. I mean it is a cancer drug anyway. I am a cancer patient aren’t I? (I am joking I hope you know) I’ve seen people get that stuff that actually need it plenty of times. Good ‘ol Procrit and Epogen.

Next up

Today is day 331. My next doctor’s visit is Oct. 7^th. There, we will discuss the immunizations I need to get, and probably get some of them. I know I will probably get the swine flu and regular flu shots. I’ll let you know how it goes.

Until next time,

Peace and chicken grease. (or pork grease for you swine flu lovers out there)

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.