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...