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...