A Long Time Coming For You

It has been a long time. What, almost 2 months since the last post? October was the last time I actually posted, so let's see if I can get this right. I've gone through a lot since November, but unfortunately I probably wont be able to go in as much depth as I'd like to.

More Hospital Time, but the end of VOD
So in late November, I was still suffering from all the complications of VOD (Veno Occlusive Disease). I developed the disease from the series of total body radiation I got. Along with peeling skin, extreme itching, and straight up pain, the VOD was the worst. It was hard to move around because I felt like a pregnant woman with my big gut. The huge belly just got in the way. Ironically, eating more was supposed to help with my messed up liver and, in turn, shrink my big, fluid filled belly. The doctors, especially Dr. Ho, said to follow what the dietitian says about what I should eat. The thing was though, is that I didn't have any appetite, so some anger developed on my part that I'll describe later.

Well something worked and my liver functions kept coming back better and more normal. Along with that, my belly and feet started to shrink, the built up fluid leaving my body. Everyday during rounds, the Dr.'s would be impressed on how much better I was looking, especially commenting on my belly.
I could finally touch my knee to my chest! My feet, although they shrank from sasquatch-size, still hurt. I'd get these cramps and knots that I had to try and rub out, but immediately after messaging a knot out, it would come back. I first noticed it when I was getting my weekly uncomfortable ultrasound of my liver. My heels started cramping up bad when the technician was rubbing my chest with the gooey stuff (sometimes scolding hot stuff). The nurses tried to give me oxycodone for the pain, but it didn't touch it. I did have a fetanyl pain pump, so I was pressing the button a lot for relief.
(no, there is not a pillow in my shirt in the before/after photo)

Turkey Time!
Too bad I didn't get any turkey for thanksgiving. My older brother, Kris, came up from grad school at VCU to spend Thanksgiving with us. It was awesome having him around, not just for the company, but for the help in taking care of me, giving my parents a break. Kris would go on my walks with me, and that was better than doing those walks with my mom, because we could catch up and have good conversation. Kris also brought something he had been working on at school. He and some classmates entered a film competition, a competition against some serious professionals too. Mind my brother; he's in drag - http://www.filmchallenge.org/vote/pockets-full-of-love . They won best use of the Romance Genre and a special award for my bro dressed in drag - awesome! We also spent some quality time watching some tight flicks too, like Breakin' 2: Electric Boogaloo and Kung-Fu Hustle.
On Thanksgiving, our Boston friends Kenn and Mac brought dinner... for my family. I had to eat hospital food. mmmmm. Kris is allergic to turkey, so he ate some cafeteria food along with some other food Kenn and Mac brought. I think they enjoyed the dinner. I enjoyed my bro's visit. He left that weekend - back to school.

My dad surprised me pretty good the following week. My oldest brother, Keith, came up to visit for the week. I was the only one who didn't know. Even my nurses knew. They would get to know about him even more too, because he's crazy. He jokes around a lot, and he did it by hitting on the nurses (Alicia if you're reading this don't get mad, you know how he is - fearless) and telling me which nurses' digits I should nab. Keith and I watched some tight flicks too. He introduced me to Kung-Fu Panda and Tropic Thunder. Tropic Thunder is one of the funniest movies I've seen lately and Kung-Fu Panda was surprisingly good. I always thought Dreamworks Animation milked Shrek for all it's worth and has had some mediocre films since Shrek's success, but the Panda movie was good. Keith walked with me just like Kris did as well as shown in the picture (I got the nasty look on my face like I just got a whiff of something super smelly, but I was exhausted from the walk). He left back to Kansas City at the end of that week.

Both brothers witnessed my battle against eating, against food. I still fight this battle up until now. The dietitians made it so we had calorie intake sheets, where we would write what I ate, when, and how much calories were yielded. I was constantly pressured to meet a daily goal and we tried to find shortcuts to meet these goals. The shortcuts usually involved some sort of milk product because they got all 'dem calories, so me and chocolate Ensure became good friends. For the dietitians, that wasn't enough though. They thought they could get more calories out of less. They had me try different milk products, some that were mixed, like frappes (New England talk for milkshakes), and others that weren't, like Carnation Instant Breakfast, all of which I vomited; each one I threw up hard! Who likes throwing up? I know I don't and I didn't like throwing up hard either. It hurts. Because of this, I associated my anguish with the dietitians, and began to dislike their visits and their suggestions because none of them worked. I mean it was their fault, right? I don't know, it wasn't very encouraging when you fight yourself to get in over 1000 calories in (which was super hard), and they say it's not enough. I felt as though they expected me to take in 2000 calories after not being able to eat anything for a week, due to the esophagitis and mucositis. Anyways, enough ranting about how I dislike the dietitians.
My eating problems, combined with my general lousy mood prompted my dad to ask the doctors to get someone I could talk to about my problems. When the psychologists came the first time, I felt sick and was vomiting hard, so they rushed out and came back the next day. I've always felt weird about talking to a psychologist about cancer and how it's affected my life. I've thought about seeing the someone on campus, but I still felt that social stigma that people who see shrinks have problems, so I never made time for it. Looking back, it made sense because I tried to mask the fact that I had any problems, or at least fight them and not give in to their side effects. The truth is that I did need someone to talk to. I've kept all that I have been through bottled up for too long. I had been in hospitals for too long. Who wouldn't feel down? (since the relapse I've been in hospitals since Aug. 7th)
I think talking to the psychologist helped. I finally discussed how some things actually made me feel and I'm not gonna lie, I cried some. I had some symptoms of depression too. When family or friends came, I was super apologetic. I didn't want them to see me in this state. I'd get emotional because I was sorry that they had to experience me at my worst (I thought was my worst, my bro thinks it's at my best, as I'm fighting this disease). I had to let that go. We also discussed my history with cancer, being a patient-student for the past 3 years, and my eating troubles. I got put on this medication called Remeron that is an antidepressant that also helps with sleep and appetite. Wow! Something to solve all my problems!!! (not really)

Sayonara Unit 6A!!!
At the beginning of December, there was a lot of talk floating around of my discharge. I had to be more self-sufficient though. I had to be able to be off the TPN (Total Parenteral Nutrition) IV. The TPN line was basically like a feeding tube. It had all the nutrition I was and wasn't getting: all the protein, sugar, fat, vitamins and minerals one needs. The first time they tried to take me off of it, they had to put me back on it shortly after because I wasn't eating enough. So I had to get it right the second time they took me off the TPN, despite my vendetta on eating. It was difficult, but I'd have to be able to sustain myself. I needed to be able to do this before Christmas. I remember when I first got diagnosed 3 years ago, I spent Christmas in the hospital. We celebrated the holiday like three days after. My birthday was coming up too
(Dec. 15th), so I made it my goal to get discharged then. That meant I had to eat up and I did. My discharge date was set for my birthday.
I had some visitors before I left. Without me knowing about it, Pastor Greg from the Church of the Acres in Springfield came up to Boston to visit me. I've only met him a handful of times, so I was shocked to see him. And he brought a friend, Saxophonist Greg Wilson, who played a couple of Christmas tunes in my room, live! http://www.myspace.com/whosjoewilson The nurses and other coherent patients were shocked because the songs came out of nowhere, but they enjoyed it a lot. They liked it even more when Greg and Joe left me 30 of Joe's CD's to hand out to whoever was around. That was pretty cool.
I had two catheters in my chest. I had to get one removed before I left the hospital. Usually they put one on each side of your chest, but I had both on my right side, because back at KUMed, I had that blood clot in my left side. So it's December 15th, my birthday, and the radiologist comes in with a fellow or resident who's going to perform the operation. I've had a Hickman catheter in my chest before
(3 years ago) and I was put to sleep when they put it in and when they took it out. With these catheters I have now, they put me to sleep before the operation, but I'm awake when they take it out. Don't worry though, they shoot me with Lidocaine, so I wont feel a thing... so not true... It hurt like hell!!! I was groaning and crying throughout the whole thing. No matter how much Lidocaine she shot into the site, it still was excruciatingly painful just the same. The Radiologist was trying to calm me down while the fellow was having trouble getting this notch in the line out. When she finally got it out, it was the most painful part and I yelped, "Happy Birthday to Meeee..." I never want to go through another line pull awake again and I still have the other line in my chest. I'll tell them to go to hell if they try to pull this one when I'm awake. The line they kept was the one I got TPN through, while the one they took out was the one with the IV Tacrolimus going through it. Tacrolimus or Prograf or FK 506 is the anti-rejection drug I'm on pill form now. The reason they take out the Tacrolimus line is that it is really sticky in IV form and sticks inside the line.
After the procedure and some administrative stuff I got to finally go home. It was day 45 and I also had been in Brigham and Women's hospital for about 60 days. What a relief, but I was sort of anxious about going home, because I wasn't under the 24/7 watchful eye of nurses and aides, well, some aides.
I had an incident with an aide one night. I had a new nurse that night as well. I don't think you could say that you successfully went through a stem cell transplant without having at least one 'accident'. Yeah I didn't make it to the bathroom in time several times during my hospital stay. I even pooped my pants. Yeah laugh it up at the poopie pants guy... Anyways, on this night I was doing the P.P.Pants dance really hard and I had to rush to the restroom. Before I could go, I had to get my IV lines untangled and put on my slippers. By the time I reached the restroom I had to urine into a urinal, (not the toilet because they measure my output) but my hospital gown was in the way. I ended up not just soaking my gown, but getting a good deal on the floor before I could get my stuff into the urinal. When I was done, I pulled the nurse help chain and another nurse gave me a change of clothes (she was from KC, Shawnee Mission North class of '69). When I was all changed and cleaned up, the aide came in the room to get my vitals. She got my vitals, but not after knocking over my drink carelessly and with an attitude like I owed her something. She also went into the bathroom the record my urine output, but she didn't clean my mess, which is her job. So for the rest of the night, I had the door wide open with the light on. I made it obvious that she needed to clean it, but each time she came in she turned off the light and closed the door. She knew about the piss on the ground and didn't do anything about it. I made it a point that if she was my ever my aide again, I'd use my right as a patient and refuse her care. Luckily, I didn't have her again.

Home Sweet Home?
Yes, I got discharged. What an awesome birthday present. Being home, although weird, was a nice change of scenery. The weirdest thing was the bed. I didn't have the cool hospital adjustable bed anymore. Luckily, I prepared for this change in the hospital by sleeping with the adjustable bed fully flat. The day after my discharge, my older brother, Kris, came back for holiday break. I was glad he was back - I'd have someone to hang out with.
Part of the adjustment to home life, was the fact that I had to return to Boston weekly for appointments. My first appointment at Dana-Farber was that Friday, but there was supposed to be a big snow storm that evening. We decided to see the doctor Friday morning and get the bloodwork done, spend the night at a hotel, then I'd get infused that following Saturday. Logistically, it was difficult trek, because hotels aren't the cleanest place, so I had to be careful and my family cleaned the room.
Things didn't go as smoothly as planned come Friday night in the hotel. I was feeling a little chilly and my parents were acting all paranoid, so they checked my temperature. I had a fever of over 101. My dad called in, and I was supposed to get checked into Brigham and Women's hospital again in the morning. I got lucky, as I was put in the same unit, 6A, where the nurses and doctors knew me.
When I got back to the unit, all the staff was like, "You missed us?" Well, I kind of actually did, haha. I only had a fever for that day, as I felt normal for the rest of the weekend and I was discharged again that Tuesday and home for the week of Christmas.

I have accumulated a lot of mail. When I was in the hospital, it decorated my room. I still got a lot of mail when I was discharged. My brother even brought some from school. So thanks to everyone for the gifts, kind messages, thoughts and prayers. It's been rough, so it really helped!

The New Routine, a Day in the Life of...
I feared the day Kris would leave, because then I would have to hang out with only my parents for the year (oh nooo!). That day came Monday, Jan. 5th. But luckily later on that day my friends from school, Thornton, Jesse and Connor, coordinated a visit with me on their road trip. We hung out for about 3 hours before they had to go to NYC. I wish we could have done more, like a tour of my small town of Wilbraham, or play some video games or something, but time and just my health limited our rendezvous. My medical staff was really cautious about me having visitors, so we all had to mask up and wear gloves (which I do whenever I go out in public anyway). Sadly, it was my last contact with civilization, before my mom and my dad took over. Thanks again guys for the visit!

So today is January 25th and I'm on day 86 from transplant. I'm in a groove now of doing similar things everyday. My mom wakes me up to pills at like 7am. Then I go back to sleep for an hour. She wakes me up again with breakfast and it's accompanying pills, which is a lot. I then go to our bonus room (in New England, there's a style in some houses, where there's an extra room in the upstairs called a bonus room, where you can make it into whatever - a game room. bedroom, guestroom, etc.) and I get on the laptop, watch some TV or read. After that I will exercise by walking back and forth in my upstairs or riding the stationary bike, or both. I spend time with my parents in the evenings. I also have my mom help me shower in the evenings usually. I sit down and use the hose attachment because I'm still weak to stand and do it (I might be able to now though). It makes me feel like a geezer. I take a ton of pills in the evening too before I sleep, which is usually around 11pm now.
I go to clinic in Boston once or twice a week, depending on how I am feeling and how my counts are looking. It is about an 80 mile drive to Dana-Farber and it takes a little less than an hour and a half to get there if there's no traffic. The place is usually really packed, so I try and stay away from people (I mask up and wear gloves because I'm out in the public). We usually have to wait a long time, probably an hour after our scheduled appointment times. Then if I need blood products, we wait even longer for them to arrive after Dr. Antin or Julie (the nurse practitioner) orders them. The blood products, especially red blood, take a while to get infused too. Basically, the days I go to clinic can be very looooong (like this blog post). I usually have something to read while I'm there and my mom brings food from home, so that I can eat. We recently discovered the Blum Patient and Family Resource Center, which is basically like a cancer library. They have got TONS of material - books, pamplets, videos, helpers and just a lot of stuff. I drew for the first time in a long time while I was there, because there is an arts and crafts room. The lady that runs it hooked me up with some paper and a pencil set and I did this. I was super pissed when I was drawing because I have the shaky hand thing from one of my medications. I couldn't draw straight. Oh well, at least I am still able to hold a pencil.

So when I get infused I usually get red blood, platelets, and/or magnesium. They like to do red blood transfusion when my hematocrit is at 25 or below. They like to do platelets when it's at 11
(thousand I believe) or below, so I don't bleed. I've been getting a lot of transfusions lately. It's been every visit. It takes a long time for cord blood patients to fully graft so that's the reason I'm not able to adequately produce enough blood. My blood type also will change to the surviving cord's type, and that's happening right now, although it hasn't changed yet. I'm still B+. It'll either change to A- or O, because those were the blood types of the two cords I got.
After clinic visits I still get swollen feet. It's because I get more fluid in my body, so I try to elevate me feet as much as possible when I get home to get rid of the Sasquatch feet syndrome. Other than that there's not much going on with me. I'm still having trouble eating, but it's getting better. But I really need to end this blog post, it's getting long and I'm tired of writing.

Oh, one more thing...
I GOT HAIR!!!!!!!... and a nasty mustache if you look close enough...

Misery, Thy name is....

DK’s dad here....

If you were to ask DKDelicious how it’s going. You might get the usual Darren smile and an “OK”. But it’s also quite possible you will see and hear what misery is. Misery is daily low grade fevers and associated chills. Misery is being so tired and week that you huff and puff just going to the bathroom or getting up to take care of your teeth. Misery = uncontrolled itching.. And misery not wanting to eat…only to have your mom shovel it down as only a Filipino mom can do and even if it’s Gerber Graduates.

3-weeks down and counting
We are now at beyond day # 21. Yeah!!!!!! We’re starting to see him produce his own blood cells. The white blood cells finally started to register some growth and doubled for the next 3-days. Right now, they have plateaued…which is expected with cord-blood stem cells.

Return of Sasquatch
Veno Occlusive Disease is when you have clotting in the small vessels in the liver which causes the flow through the liver to reserve. When this happens, fluids collect in other places in the body and there’s significant weigh gain. This is what happened to DK over the last couple of weeks. In 5-days he picked up 30-lbs…all fluid. His belly was extremely taunt from the fluid collecting all around his abdomen…and very painful. This fluid also settled in his legs and feet. He has Sasquatch feet; they are "ginormous" … and painful to the touch. But he still finds the stamina to walk on these huge stumps…and occasionally he “busts a move” (dances).

Goodbye Little Darren
DKDelicious had a rough day on Friday the 21st. He was up all night racked with pain, which rolled across his belly in waves so high that we often shouted in agony. Hard to watch, and even harder for him to experience it. So after an x-ray, CT scan, and ultrasound and given his counts were all still moving in the right direction, the medical team decided they should tap his tummy. By doing this, they removed a liter and a half of fluid. This allowed him to say bid farewell to his protruding belly, which he nicknames “Little Darren”. He is a lot more comfortable now.

My Story…
On Thursday, November 20th cover story in The University Daily Kansas as story about DKDelicious’ journey to date. http://www.kansan.com/stories/2008/nov/20/living_and_laughing/. It’s worth the read and compliments much of what he shares in this blog. He is particularly excited about this being an opportunity to raise awareness about transplants and leukemia.

A Changing of the Guard…This week was rotation time on the BMT ward. A special thanks to Dr. Stoiffer (co-chair of the BMT program), Dr. Bhlatt, and Dr. Ghoroghchian (aka Dr. G.) for getting up through the first 3-weeks of this journey.

Thanks again to all the folks out there who have been praying for us and reaching out to offer support. Know that your prayers are making a difference and support is greatly appreciated.

DKDaddy out.

Week One Done and Gone...and Still Dancin`

DK's dad here...

What a week! An new president and lots of challenges in the transplant battle.

Shin Bone Connected to the....

Shin bone pain was a major issue for DK. He had daily visits with pain that required medication to give him relief. It started out with a kind of dull pain in those long bones (and if you know how tall DK is, those bones are very long...smile), and escalated to a sharper pain that included his knees as well. Thank God for pain meds.

Juicy....

Another major challenge for DK was his bout with mucositis (inflammation and irritation of the mucous membranes) in his throat and down into his tummy. Very painful..... As a result, he hasn't been able to eat anything or drink much in several days. He's getting nutrition and fluids intravenously through the direct line in his chest. Another side effect of this situation is excess mucous that he can't quite clean on his own, so they gave him a suction tube to help keep on top of all "juicy stuff" he keeps manufacturing. In short, this situation literally sucks.

Fever's Back....

After a week of no fevers, he started spiking fevers again yesterday. So far the blood cultures aren't showing any kind of infection. They did another CT scan, which showed that the pneumonia has greatly improved....but also show a little swelling on his liver (which they will continue to watch). Bottom line his pneumonia is better and they're not sure why he's having fevers...which could be just because he's so darn HOT! Smile.

Still Dancin`....

When he's feeling good (relatively speaking), he's on the phone, watching the worst, low budget movie on the SciFi channel, and/or he goes for walks on the ward (back and forth; back and forth). When he's feeling really good (really relatively speaking), he dances. Yes folks....he dances. It ranges from demonstrating a recently created dance in honor of one of his favorite nurses (note that all of them seem to be his favorites) to treating some other patient's visitor (who happened to come upon the demonstration) how to do the basics of popping and locking. Of course, his mother is always a candidate for a boogaloo roll lesson...too funny. One evening he called out one of his nurses with a step he created on the fly just for him. The nurse, "MJ", threaten to recommend him for a psychiatric consult. Too funny!

He's into week #2. Please keep him in your thoughts and prayers. We want no infections and those stem cell to hurry up and graft. Blessings....

DKDaddy out!

New Birthday....

Hi World.... Dad here.

DKDelicious had a very busy week, ending with a new birthday. Last week he had two doses of radiation to the head, seven rounds of full body radiation, two days of high dose chemo, and another (the 3rd one) bronchoscopy. He did quite well through all of these procedures.

The big news is he received his new stem cells yesterday....Yea!!!!!! So now he has a new birthday....Halloween of all days. Pretty neat for a kid who loves scary movies.

The other big news is the bronchoscopy revealed that the cause of the latest pneumonia (finally....) was a bacteria. It also showed that the bacteria is in declined...apparently they've been using the right medication to beat up this bug.

This week also brought some nice touches....a call from the University of Kansas head track coach, Stanley Redwine; flowers from the KU athletic director, Lew Perkins; and banner from the cancer walk from his classmates at KU. The banner was 10-ft long and signed by tons of KU students.

So what's next? We wait. We wait for the stem cells to graft and build new bone marrow.

Thanks for all the thoughts, prayers, and support. Everyday we see a miracle.

Weird Time

Okay, this will probably be my last post for a while. The schedule remains the same. (The big thing over me lets the tech see if I'm in the right place and get's removed during the radiation.)

Weekend

I'm having a hard time remembering things in sequence right now. I'm really cloudy about the whole weekend. I got high dose chemotherapy over the weekend, but I really didn't have any problems. They warned me that it was 10 times as strong as the Cytoxin I've had before, but I never had nausea (probably from the anti-nausea medication). I vomited twice though. Apparently I also got a CT Scan on Sunday, but I don't remember getting it. It showed that the fluid got worst, but clinically I was getting better. This weird situation is what my doctors are dealing with right now.

Over the past three years and through the 4 different hospitals I've been treated at, I've seen my fair share of IV pumps. The ones here at Brigham and Women's own all. They are awesome. As an Industrial Design major, I always thought that I could do medical design, because I've spent so much time, and seen so much medical equipment. I know my way around hospital stays. But hospital equipment has always been boring to me. It seems like everything has been made and improved. I felt like hospital equipment design is saturated (which it probably is). The system they use here to administer everything actually excites me. Although you wear a boring wristband with a bar code, but phlebotomy, nurses, or lab techs have these coolio scanners that scan your wristband. The nurses' scanners are small because they work with laptops, but the phlebotomy/lab techs have pen tablet screen scanners. They also walk around with miniature printers that print off the stickers which allows them to label all the blood draws (a ton). Awesome. All the other hospitals use the pen and paper method. Prehistoric. What's really cool is that the IV pumps also get the information. They tell you what medication you are getting, and not just how long. Once a medication is done and all that's running is IV fluid, it will tell you that. Soo awesome... One pump can have others stack up on each side like LEGOS!!! genius... sorry I'm getting excited over IV pumps...I've do remember having some really vivid dreams over the weekend. I think I was in and out of sleep a lot. My catheter has been really tender too. So I've been on pain meds for that. What really is annoying is that the doctors want me to drink less water and more juices and sodas. When do they tell you to drink less water? My sodium levels were low, but I hate the aftertaste of everything but water. Why? Because it has none. They liked the fact that I was drinking a lot though, but I wish it was water. I love water.

Total Body Radiation

This week I've been getting total body radiation twice a day. It tires me out. I'm tired right now as I'm typing this. My jaw feels swollen too. I lie on this bed and they have high-energy x-ray beams zap me above and below for 20 minutes. The tech is cool, but the music choice while I wait is horrible. Most people will probably disagree, but I don't feel like listening to 'NOW! That's What I Call Music', because it isn't. I'd rather listen to "Kidz Bop", because at least I could laugh at little kids renditions of pop songs. I tried to burn some Funk CD to get that radiation all funky, stinky, and nasty, but I couldn't get a good burn. I'll put the funk in it though, you just wait.

Ahead

So the CT scan showed that there is more fluid, even though I look and feel better. I also have had less fevers, even none. The fluid really bothers all the doctors though (BMT, ID, & Lung). Last night, really late, the attending Infectious Disease doctor explained that they really needed to know what disease they were dealing with. The last bronchoscopy didn't yield any results, just as the KUMed one didn't. It was his opinion that they biopsy the lung where the fluid is, so they can make sure what they were dealing with. There were two methods he thought were best. One would be sticking a needle in from the outside and extracting the tissue, as guided by a CT maching. The other method was another bronchoscopy, but this time they'd have forceps that run through the tube to obtain the tissue. With the CT scan, they saw that the fluid was close enough to the airway that they could get a biopsy close to the site. The most effective method, one that none of them prefered to do, would be to do an open chest surgery. Yeeouch! I know Dr. Antin didn't want to do anymore invasive procedures, because of the risk of another lung collapse. But today all the doctors agreed that tomorrow was the narrow window of opportunity to figure out what they are dealing with. And by all doctors, I mean ALL doctors. Today I had like 8 in my room talking and examining me at once. I had to defend myself against a three person, man-to-man stethoscope offense. They really wanted to listen to me.
I found out there are weekly visits from dietitians, physical therapists, dentists, and message therapists. The massage therapist that came in today name was Bambi. My mom and her figured out that each other were Filipinos and then the crazy talk began immediately. I have a friend that thinks Tagalog (language of the Philippines), sounds like someone saying 'peanut butter' over and over, really fast. You should try saying this out loud!

So, tomorrow I'm getting another bronch. Hopefully they can figure out what is growing in my lung, even though I feel better. Damn you 'ninja bug'! Because of the procedure, I'm only getting full body radiation once tomorrow, and twice on Thursday. Honestly, I'm nervous about having pneumonia and going through with this transplant. The BMT doctors here have done hundreds of transplants, and seem confident that they can succeed again. That makes me feel better, but I never have full peace of mind - something I'm used to.

Well, I hear another bald patient next door either playing 'Marvel vs. Capcom 2' or a 'Street Fighter Alpha' game and my hands are getting a little shaky. My palms are sweaty and itching at the same time. Ooooo I'm tempted to owned someone hard in either one of those games.

For real though, this is probably my last post for a while. Thank you to everyone who has supported me - prayers, thoughts, talks, and visits. Thank you, I'll be back.

I'm About to Feel Like Doo Doo

This will probably be my last update before transplant. I may or may not have pictures in this post, even though I've taken some for it. I feel like doo doo, and if I have the energy I will post some. Sorry if this post sucks, I'm not writing it under the best circumstances - the hospital. I'm going to have my dad write updates from now on, because I wont feel like it until I go home.

Decision
So my last post ended with me doing tests at Dana-Farber (D-F). The following all happened without my knowledge at first. Two weeks ago, on Monday, Oct. 6th, D-F calls my Dad and tells him that the cords KU matched for me are unsuitable and that I'm having trouble finding suitable matches. My Dad was confused because he thought that KU and D-F had a deal before he drove me up here. D-F said nothing matched at the allele level. My Dad called my transplant coordinator at KU and asked about their matching. KU matched 4 of 6 on the antigen level. Being the statistition that he is, my Dad proceeds to do research and compares cord blood typing and transplant success rates between different institutions. Duke Medical shows to have done the most cord bloods in the world at 395. He also finds out all the institutions around the nation type at the antigen level. He calls back D-F describing his findings. My transplant nurse had never heard of typing at the antigen level, but the person at D-F in charge of my search explained that D-F is the only place that types at the allele level at 4 of 6. Meanwhile, Dr. McGuirk, my Doctor at KU, hears about the administrative hubbaloo and is furious. He calls my dad expressing that I go with his colleague, Dr. Avigan, across the street at Beth Israel Deaconess Hospital. He did his residency with Dr. Avigan Sloan Kettering. Dana-Farber calls my dad back and says that they'll lax their standards for me and type at 4 of 6 at the antigen level. I wouldn't find anything at the allele level because my unique genetic makeup. The KU cords are still unsuitable because they have a double mismatch at the microscopic level. They wanted to find "DR" matches, as A and B could be a mismatch.

By Wednesday, my Dad tells me all that has happened. I'm pretty shocked. He doesn't want to seem biased towards any institution, but he lists my options. I could say, "i hate this place take me back to KU", keep with D-F, or see what Beth Israel was about. I decided that I would hold off on my choice after I met with the doctors and toured the facility after that Friday, Oct. 10th. I also had to go to Dana-Farber that day to remove my PICC line, because it was a liability for infection. In the meantime, I was a little depressed that I was put i this situation.

On Friday, I got my PICC out like expected. Beth Israel Deaconess Hospital (BIDH) was right next door to D-F. It was a pretty nice hospital. I didn't realize it was a Jewish hospital until the saw the name of its buildings - Shapiro, Feldberg, Kirstein, Reisman etc. The place was empty and I didn't know why until I figured out that it was just Yom Kippur. I didn't see Dr. Avigan, because he was travelling somewhere, so I met with two of his collegues, Drs. Tchavanis (i think) and Rosenblatt. They were pretty nice and told me that they wouldn't have used KU's cords either because there were too many mismatches, even though they would still type at the antigen level. Between D-F and BIDH, they said the care and time frame wouldn't differ much. They had a team of 6 BMT doctors to D-F's like 15, so it was definately smaller. I then got to see the transplant ward. It wasn't just a transplant ward though, it was a Hematology/Oncology ward with certain rooms designated for BMT patients. The setup reminded me of the setup at KU. There were the general hematology patients at on one side with BMT patients on the other. In the center was the nurses station.

Over the weekend I had to decide which of the three, KU, D-F, or BIDH, I would choose. I decided very quickly that I didn't want to go back to KU. My Dad made it seem that they could make it work, so I don't worry about it. It was about where I felt the most comfortable, but I told him that having my parents be comfortable makes me feel comfortable. Then I weighed the pros and cons of each place. At Beth Israel, it felt a lot like KU. It also wasn't as big as D-F, so I thought I'd get more attention. The thing that concerned me was the setup of the ward. I'd have to be stuck in my room the whole time (the rooms were big though), and having the BMT rooms next to all the other hematology room made it seem less isolating (which is what I want in the hospital so I don't get sick). At D-F, I had all my tests there. I was already scheduled for my last appointment before transplant that Tuesday as well. The transplant wards are just that, transplant wards exclusively, so there were BMT nurses . The bad thing is that we had to deal with the whole typing fiasco. It was a hard desicion, but I leaned towards D-F, because I felt I'd have less of a chance for infection there.

Pre Transplant
So, before that Tuesday I got pretty good news from D-F. They found cords that matched 3 of 6 on the allele level and at least 4 of 6 on the antigen level. I also got a call from BIDH. They told me, even thought they'd still take me, they thought it was best that I stayed at D-F, because transfering the info over from D-F would only delay my transplant.

Tuesday was an action packed day. I first met with my social worker, Tammy. She discussed the issues of transplant outside the treatment. She also described what kinds of support I'd get, dietition, physical therapy, psychology if I needed it. I then had to get blood work done. Afterwards I walked across the street to where I'd be staying at Brigham and Women's Hospital (BWH). There I met with the radiation oncologist, Dr. Ng. She described the two types of radiation I was getting, head and full body. They told me the side effects and described the process. There's a whole page of side effects for full body, most are temporary, but sterility has a 99% chance of being perminent. Luckily, I sperm banked 3 years ago when I first was diagnosed with cancer. I had to be fitted for a mask and lung shields afterward.
Getting fitted for the mask was weird. The technicians first got this meshy plastic really hot, so it was malleable. They then plopped it on my face and molded it to my features. I felt like the man in the iron mask. I had to close my eyes, but I could breathe because the meshy material. The mask was for the head radiation. My type of cancer can relapse in the brain, so they do a series of head radiation on top of full body radiation. At BWH, they do their full body radiations on a canvas-like bed. It's one of the few places that does things this way. The radiation comes above and below. They fitted me for the lead lung shields for this. I hear it's worst than chemotherapy.

After that I met with Toni, my transplant coordinator. She went over the schedule with us. I start head radiation Thursday, Oct. 23. I also get it the next day and I get admitted that day. While I'm admitted I get my 2 chest catheters put in. They thread them through the jugular and out the chest. I've had one before when I first was diagnosed. Over the weekend I get high-dose chemotherapy. It's Cytoxin, which I've have plenty of times before, and even taken it to class before. It makes your pee turn red-orange, unless it's the clear chemotherapy. Even I get mixed up with these names. This time I'm getting 10x as much and only over 1 hour. Vomit Time 2008!!!! Starting Monday I get full-body radiation 2x a day for 4 days. On the 4th day, Thursday I get infused with the new stem cells. I hear it's very anticlimactic because it's just like a blood transfusion. They wait 5-6 hours and infuse the 2nd cord. I wait 2-4 week for the new cells to engraft, then stay in the hospital until I'm ready to leave. They keep 1 cord on standby, just in case one doesn't engraft.

After meeting with Toni, we met with Dr. Antin. We signed consent forms. I was also going to be a part of 3 studies, one voluntarily. The voluntary study (not clinical trial because i'm not testing new drugs). I get MRIs and blood tests to see how much iron is left in transplant patients before during, 6 months out, and a year out, in the body. Sure I'd help research. It's things like these studies that I'm able to survive today. I told him I still had some concerns about my lung. He showed us the x-ray they did last week, and there were only two abnormal spots that were probably scar tissue.

Unfortunate Hiccup
So my plan was to spend the rest of the time, before getting head radiation, to get all the things I wanted to finally get done before I probably wouldn't be able to do them for a while. I also prepared my body by riding the stationary bike, while watching sweet action movies like Demolition Man and Terminator 2 - old action movies that pump you the hell up like Predator.

I started having more of an inkling that there was something brewing in my chest. There was some pressure there and I had a slight cough at times. Come early Saturday morning, I wake up with chest pain. It felt like the same chest pain I felt when I first got a lung infection. I was breathing shallow. I was like, "you've got to be kidding MEEEE!!!" I got REALLY PISSED OFF! I'm someone who never physically shows anger or gets angry about anything, but I knew what the chest pain possibly meant. It meant that I'd have to go to the hospital. It meant that my transplant could be delayed again. It meant that if I stayed on schedule, whatever bug that was in my chest might kill me.
After I cooled down I woke up my parents, visually concerned. My Dad called Dr. Antin and he wanted me to drive to Boston and go the the Emergency Room at BWH. I had checked my temp before we left and I had a fever. I remembered to bring my camera along this time for the drive. The drive to Boston is so damn gorgeous. It looked like Fruit Loops. Fruit Loops?? Yeah, Fruit Loops. The bold greens, reds, oranges and yellows of the trees penetrate the eye, and you cant help but to go into dream world. "How about purple and blue? Those are Fruit Loops too!" The sky, my friends, the sky!

I got these tickets for early admission!
We got to the Emergency Room pretty early, so there was hardly any wait time. They gave me 2 high powered antibiotics I haven't had before, Vancomycin and Ceftazidime. I also got Chest X-Rays and CT Scans. One of the doctors also did an ultrasound of my chest to see if there was any fluid they could see and a preliminary analysis. She only found 1 millimeter of fluid from my old chest tube site. The nurses and doctors got things done with little wait time. Since it was early in the day, on a Saturday, it wasn't busy yet.
I did see some stuff I didn't want to. I'm used to seeing naked bodies. Observing them for hours and recording what I see on paper - the gesture, movement, emotion, shade, capturing the proportions of the human anatomy, etc. I love studying the human figure as an artist. Well some other people had hospital gowns in the ER. I saw a bare butt that I didn't even think was possible! That booty was an alien and it was looking back at me. I got bashful and quickly walked away...
I spent 4 hours in the ER and was taken to my room. All the oncology wards and BMT wards were full, so I was taken to the very top floor - the 16th floor: Orthopedic Ward.

Coughing, Hacking, Chest Pain on the tizzy-top flizoor, hollaaaaaa
I was the only cancer patient where everyone else had broken bones. My room was dirtier than any I've been in (oncology rooms are clean). My bed was long enough for my 6'3" body but I had a Jungle Gym above me - poles the hold up casts and such. My view was amazing! I could see the whole Boston urban jungle. I also had a helipad right outside my window, and the first day I saw 6 rescues. They really look cool at night. When the helicopter lands, everyone gets out and transports the patient, including the pilots. The helicopter is left open. When I first realized that, a devious though hit me, Grand Theft Auto style. If I could find out how to get to that helipad I could get jiggy wit it. Damn that would be nice.

The nurses were awesome, especially the spunky ones with Boston accents. I'd take daily walks around my floor because I didn't feel bad, unless I spiked a fever, which was becoming less frequent. The tower of wards had 4 units per floor, but my floor only had 2 orthopedic units. The hallways were littered with storage, hospital beds, and equipment. The other half of the floor had like an exclusive access. There were Cherrywood doors with a special intercom/key entry. I saw people dressed in busboy/waiter/waitress getups going in with extravagant silver silverware. When those cherry doors opened, there was more cherry paneled walls with very nice tile-work on the floor. I was like, 'what the... is this VIP?" So I joke around with one of the cool, spunk, Boston-accented nurses I befriended that I was gonna sneak into the VIP on one of my daily walks, when I wasn't spiking a fever. She said sometimes she workes in there and asked if I wanted to see it. I said, "Tchyeahhh!" So we got in there and she told me, laughing that she will probably get fired for this. We went into one of the empty rooms. Hardwood floors, cherry panelled walls, extravagant painting, small dinner tables, very nice couches, big nicely tiled bathrooms - VIP. We kept walking and one of the nurses in the nursing station asked what we were doing, and Danielle said that she was just showing her friend (me) around. The nurse whispered back, "The snobs don't like that." I knew what she was talking about because when I walked by a room with an open door, I'd see a family member, curiously looking out at me like, "who let that hoodlum in here?" Danielle did end up getting chewed out, but she told me about it laughing. The rooms go for $800 a day. They have a private kitchen where you can order anything you want. The types of people who stay there are the rich, celebrities, and even princes from other countries. Basically you'll see your Wall Street Fat Cats or Dogs staying in that VIP. It's also interesting to see the contrast of the littered halls of my unit and the richness of VIP. It's a classic case of the Haves and Have-nots.

Again, the nurses were great. In fact, at every hospital, I've liked all my nurses, except that one IV nurse at KU. The IV nurses here at BWH get the job done quick, and are fun to talk to. The only thing are some of the nurse's aides, called PCA's here. There were a couple that had major attitudes towards me. I have no clue why, but I think it was because I was a neutropenic cancer patient on their orthopedic floor. I don't think they liked that they had to wear mask and gloves everytime they came in. They lightened up later though, because I think they realized that I'm a patient that doesn't ask for much. I hardly ever push that nurse-call button.

Trick or Treatments
I've learned over the years that hospitals hibernate during weekends. Baystate, KU, BWH - it doesn't matter, it's hard to get things done in hospitals during the weekend. When Monday hit, I heard a circus outside my room. It was a party and I wasn't invited. Dr. Antin came in early and talked to find out how I was doing. He was going to get the Infectious Disease doctors, and Pulmonary doctors involved. Sound familiar? Oh wait, I dealt with the same at KU!!! BWH is a teaching hospital, like KUMed, but it's a teaching affiliate with Harvard Medical. Sometimes the doctors would come in with whole entourages. The residents I dealt with were all quality as well. I met with the ID doctors and they didn't ask as many questions as the ones in Kansas, like if I've played with farm animals. They did want the CT Scans from KU. The Pulmonary doctors were a high energy group and funny. They told me that I was going to get a bronchoscopy. Got one of those already at KU, but I was put out during it. This time I had to be NPO (not drinking or eating after 12am the night before operation). When the procedure started, I didn't breathe in the smoky stuff, like I did at KUMed. Here, the Dr.Richards sprayed nasty-licious lidocaine spray in the back of my throat. Then I'd have to inhale when he sprayed. They didn't completely put me out during this operation this time. They stuck a tube down by trachea and into my right lung. The device shot out 4 ounces of water and sucked it back it. I think the water sturred up the pneumonia fluid too. Towards the end of the operation I started panicking by grabbing at the air and pounding my chest like I couldn't breathe. I apologized for my antics to the doctors, but they said I did great. When I was finally able to drink and eat, it had nothing for 24 hours.
That night I went to the bathroom to pee. While I was peeing, I started to feel lightheaded. I 've felt that before and the lightheadedness usually goes away quick. The lightheadedness persisted but I couldn't just stop peeing. When I was done, I stumbled out my bathroom and collapsed on the floor. Luckily I had that Jungle Gym of a bed and I grabbed a pole quickly and lifted myself up. I got my IV pole and collapsed on my bed. I'm sure the same thing happened all over Boston that night as well, after the Tampa Rays killed the Red Sox. The nurse took my blood pressure lying down - normal. And sitting up - slightly normal. And finally standing - passing out again. They found out that I was dehydrated, so they increased my IV fluids.Come Thursday (yesterday), I get my head radiation done early. It's my first time getting beamed around by high-energy x-rays. The mask they molded for me earlier, is now functional. I lie on the table and they strap my head down. When the radiation goes, I heard a the beam, and even though my eyes were closed, saw a bright blue light. It just doesn't feel good when it's on. I told the technicians afterward, about how everytime the blue light came on it felt bad. They were like, 'What blue light?" Then they were like,"ohhh, yeah. The radiation hits your optic nerve and makes you see bright blue" Weird.

Free at Last, BMT
Early this morning, the transport for my central line catheter operation was waiting at my room. The pretty nurse I was about to get told me that she was sad she couldn't be my nurse today, because all the other ones said I was cool. They use terms like adorable, dear and hun a lot here. Anyways, I was supposed to move to the BMT Unit after the operation. They gave me some really loopy stuff for operation. Some sort of vicadin, benadryl, fentanyl, and oxycodone were some of the stuff pushed through IV I believe. Whatever they gave me, I felt loopy the whole day. It's hard to remember exactly what happened. I know my parents showed up. We went to radiation oncology. I got some more head radiation and my last.

I still hadn't fully come to, when I found myself in my room in the BMT unit. Now I'm dealing with nurses that will know what's wrong with me and meet with doctors that will know the same. The beds are amazingly comfortable compared to the jungle gym beds in orthopedics.

I think I'm gonna stop now because I just vomited.
My dad will do posts for now, until I'm ready for them again. Now the fun begins...