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...

The Death of Sasquatch and the Northeast

So I'm back in Massachusetts. Back at my parents' house in Wilbraham, a town of 13,000+ people and a suburb of Springfield, MA. Upon arrival, I got flashbacks from a similar time almost three years ago, when I first got chemo. This is the place where I was really introduced to this whole cancer thing. When we got here last Sunday, I found myself lying on my bed, staring at the ceiling like I did back then. Only then, that's all I could really do. I had no energy to do anything else, even watch TV - but that's another story. I'm here in MA now, and let me tell you how I got here.

Rewind: Discharge from KUMed
I think my last post ended with me in the hospital, the chest tube just getting taken out, and the excess fluid in my body. I was pretty mobile before the chest tube, especially for being in the hospital, but when I had that thing in for those five days, my body got deconditioned pretty badly. It didn't seem like I lost a lot of muscle mass (like I had a lot to begin with) through my daily weigh-ins. For example, that Saturday (Sept. 20) I came in at almost 200 lbs. I think I mentioned earlier about my huge swollen feet. My Sasquatch Feet, if you will. I would talk smack on my own feet to my mom, who didn't understand who sasquatch was. In broken English she'd ask, "What is sasquash?" After laughing hard, I explained that it was bigfoot, comparing the creature to my huge feet. I got more Lasix that day, and the next day at weigh-in I had dropped over 20 lbs. I guess I peed out all those pounds. I was literally lighter on my feet, and more mobile. That chest tube really set me back, as did the infection overall.
Everything else was looking better too. The X-Rays showed that my lung was stable. The CMV virus that got activated as my immune system was low, was going away - from 6,000 to 500. Although my appetite and mood weren't all that great, everything else looked good enough for me to get discharged the following day. I'd go back to the Hope Lodge with a take-home pump for Penicillin, and go to the clinic every morning to be infused with Caspofungen. I also got a take-home kit for the shots I got in the stomach every morning and night. Yeah self-administered shots in the stomach, sounds awesome. For the week ahead, my dad was coming back to town that Wednesday. I also had to get another bone marrow that day and meet with the doctor. Then we hoped to find out when I'd be able to travel, if I was going to go to do my transplant at Dana-Farber in Massachusetts, and how my infections were doing overall and how much time did that delay the transplant.

Hope Lodge Week
The Hope Lodge has its plusses and minuses. Last time I was there, I stayed only two days, so I really got acclimated to the place. I was also there on the weekend, when the place is dead, so I got to see a lot of the other lodgers. Although most of the other inhabitants are either twice or three times my age, everyone there knew the deal. Regardless of age, there was a connection there. Meeting new people and sharing cancer stories was always helpful - you learned how other people dealt with it and saw how they took care of it, like how they prepared food. I also learned that you didn't have to be a patient or caregiver to stay at the Hope Lodge. I met a guy who was staying there with his wife, who was a donor. She was a perfect HLA match for her brother undergoing a bone marrow transplant.
That was the cool stuff about the place, now to the stuff that wasn't cool about the place. The responsibility of doing all the meds were on us now, instead of nurses. I'm good about keeping track of pills and all that, because it's been a daily habit for me anyway. The pump is kinda annoying (today is the last day!), but gets really annoying when you combine it with sleeping in a small bed and having to be aware of the tubing so you don't get tangled up or it doesn't get pulled. I can relate to you ladies out there now. The pump has been my man-purse. It's always connected to me (the Penicillin runs 24/7), so I know what it's like to have to do things and try and keep that thing slinged over my arm or close by, although I don't think anyone would want to steal it or could without ripping out the catheter in my arm. Ooo, that would be a bloody mess. The shots, now only once a day, were not and still aren't fun. How would you like that needle in your gut every night? It stings for a while, but it goes away and it must be done. Well, I think it must be done. My left arm hasn't been swollen for a while now, and I still have to get this darned Lovenox shot, for the blood clot that caused the swelling.
The other difficult thing about living at the Hope Lodge is it's like living out of a hotel, and living out of a suitcase. That wasn't too bad, but it wasn't home. You don't have the infrastructure. I described in an earlier post how I finally got the Wifi figured out, but living on the third floor, I hardly ever got a signal. At the hospital, the signal was strong, so I could be online more (my excuse for not blogging in a while, haha). Despite all these things, the convenience of the location outweighed everything else. Commuting from Lawrence, although I'm used to it, takes too much time.

Wednesday: Ups and Downs, Downs then Ups
Wednesday, first thing we met with Dr. McGuirk. He explained my situation; he explained it rather frankly. The fact that I was an ALL patient who relapsed during maintenance chemotherapy was not a good thing. Then he threw up some statistic. Even though he said that I didn't quite fall under this statistic, because I responded well to the re-induction chemo, the survival rate of people in my age group that had ALL and had relapsed during chemo was 10%. That really put the odds on my side... He then went on re-emphasizing that since I responded well, as evidenced from the results of the bone marrow biopsies, that I didn't totally fall into this group. The nurse came in and then he looked at the results from my last bone marrow. While he was doing that (it was like there was a quick switch of heavy focus - from explaining my situation to studying my results), I expanded on his assessment in my thoughts. I'm not a statistic; I'm Darren. Why couldn't I be in that 10%? My dad, who got his masters in statistics, said that statistics, a lot of times have an agenda or opinion attached. Whatever the case I'm choosing to do the transplant because it's the only option I see possible right now. Mary, my nurse and good friend, told me that some people choose not to go through with a transplant. What do you do then? You accept death and just wait for it? It's a risk. One thing that I'm not looking forward to is the quality of life I'm going to have during and immediately after the transplant - horrible (although these past three years as a cancer patient haven't been optimal either). When you're old and you see your body as not being able to handle all that comes with a stem cell transplant, or you don't see the positives by taking the risk, I can see why you wouldn't go through with a transplant. It's an easy choice for me. It's not just about my life. There's been too much time, effort, love and money spent (you wouldn't believe how much money) on me through this disease that I can't not have the procedure. I'd do it several times if that's what it takes (although words can't describe how much it would suck). I guess there would be a point where quality of life would come into play, but that's not an issue right now and I hope it doesn't become one.
Back to Dr. McGuirk. Out of his silence came, "I don't believe this. Is this true? Kristen, get (insert pathologist's name here) on the phone." The results in front of him said that both my blasts and flow were 0%. He wanted to know if I really was in remission or not, so he said the rest of what he had to say - the precautions and the possible pitfalls of transitioning to Boston, if I were to take my treatment there. He said he'd find out what the bone marrow results were all about, and call Dr. Antin (from Dana-Farber). After that I immediately got another CT scan of my chest to check the nodules from the pneumonia, and then got my Caspofungen infusion. He wanted to see me before I left.
Got Caspofungen. Our good friend Nancy came and ate lunch with us, then it was go time.
When I came back to his office the mood was totally different. He busted up in there with three good things to tell me. First, for my marrow results, they were as shown, but the pathologists were kinda scratching their heads about it, so he wanted another biopsy done the next day to make sure (kinda good news, ouch). Second, the CT Scan results showed that the lesions in my lung were almost non-existent. Third, he talked to Dr. Antin and explained the urgency that they needed to take with me, because I had this short window of opportunity to get this transplant in, and Dr. Antin agreed. After all that we high fived, haha. High-fiving Dr. McGuirk doesn't happen very often, so it was pretty significant. He doesn't even shake hands, because he doesn't want to pass germs to other patients, which is understandable, with most of his patients being immunosuppressant. Since I couldn't travel by plane for 6 weeks due to my lung, he said the earliest I could travel by road was that Friday, but he wanted to see me that morning before I left.

The next day I got another bone marrow biopsy. I think it was my 12th one. Abbie, one of the nurse practitioners that does marrows, always talks about how I'm now the standard for their bone marrows. When she did her first one on me, I was explaining what I was into and dancing came up. So I was briefly describing all the styles, the culture and history of both Popping and Locking. So after they were done, I demonstrated some stuff - mainly stuff that didn't involve too much movement. They were impressed that I danced right after a marrow. So now, when anyone complains or cries about having a marrow done, they talk about the one patient (me) that got right off the table and started dancing. I guess I'm a bone marrow biopsy legend now at KU. Well, on this day, it was the same cast from that time, but I didn't dance this go 'round. I had been feeling kind of wussy lately, probably because I got hammered in the hospital the past month and some change. The reunion was kind of funny though.
My dad was in town by this time. He worked during the day, but tried to hang out with us as much as possible. We solidified our decision to take an RV up to Massachusetts on Saturday morning. That afternoon, my mom and I went back to Lawrence to get things together and boxed up to take in the RV. I had to wear a mask in my place for precaution. The place is old and krusty, so the air quality wasn't the best and may have been the reason my lung got infected. At one point, I was in there by myself, sorting things out. It was tiring as hell, because I didn't have much energy and it's hard breathing through those damn masks. Towards the beginning of the evening my parents loaded up both my car and my dad's rental with all the stuff we were gonna load into the RV. We all then went back to the Hope Lodge.

On the Road Again
I saw Dr. McGuirk that morning again, but this time with both my parents. He reemphasized the precautions I should take with Dana-Farber in Boston. If they did certain things, like not being urgent with my case, then I should return to KU. He was confident, however, of the place and that I'd get quality care there. He answered our questions, but the complete bone marrow results weren't in yet. So then I got my Caspofungen for the day and it was off to load up the 'ol RV. While my parents and Mario, who we recruited to travel with us, were loading up and cleaning up the RV. I was finishing up the informational booklet that Dana-Farber sent me about their Stem Cell Transplant program. The booklet was pretty informative and surprisingly thick. It answered a lot of questions and solidified a lot of other things about the process. I already knew kind of what to expect, but after reading, I really knew what to expect. It went through pre-transplant, what and how to prepare for transplant, during transplant, post-transplant, my care team, explaining the different types of stem cell transplants, and more. I'll probably be reading this several times.

The RV was pretty nice. As you can see in the plan, there is a queen sized bed in the back, a shower, a bathroom, fridge, stove, another bed over the driver's seat, and the sitting areas also become beds. On top of that, there is a ton of storage beneath. The RV was great for camping, as for riding, we quickly found out that it was bumpy after we pulled out Saturday morning, after I got my last Caspofungen treatment at the clinic. I was getting nautious, so I took some Ativan to fight it. The other good thing about Ativan is that it makes you drowsy and forgetful, so the trip went pretty fast for me. We drove straight through - 24 hours. My dad and Mario switched off driving as we took I-70 through St. Louis, to Indianapolis, Cleveland, up to Erie, through Buffalo, and home. We did stop in Indianapolis to meet up with friend and former track coach Jon. We messed around for an hour+ and he hooked me up with some good reading material (running books and magazines) for my time out of commission. I slept on the coach most of the trip. Mario slept on the bed above the driver's seat when he wasn't driving. My parents slept on the bed in the back, the bumpiest place in the whole vehicle. It was funny hearing my mom shriek and laugh when it got really bumpy. She says she was a couple of inches in the air a couple of times, but it made her get queasy. The bathroom wasn't fun when it was bumpy, but I won't get into that. Despite the bumpiness, I think the RV was a good choice. The cost rivaled the plane tickets for my mom and I, but it got increased by $400 because it was a NASCAR weekend in Kansas City. Gotta make dat cash money!

Bu-ah-stun

We were all messed up when we got back to our house, because of the weird way we slept on the trip. My sleep schedule was still messed up from the hospital anyway. It took us a while to recover.
The next day Mario and my Dad took the RV to the drop off, but before they could do that, they had to dump the waste from it. I wasn't with them, but I remember their story; how right when they pulled up to the place, an atomic blast quickly attacked their nostrils. It smelled like poo. And apparently lots of it. I'd be dumping that stuff quick and bookin'! I imagine that's what they did too. Mario stayed until Tuesday. He helped out a ton by driving!

On Wednesday, we headed out to Boston. It was a pretty scenic drive. Massachusetts is all foresty - a very different landscape than Kansas. The trees were turning, so it was colorful too. It took about 90 mins to get to the Dana-Farber Cancer Center. I've been there before, but was quickly reminded how huge the place is. In the elevators, there are 16 floors up and like 3-4 floors down from the lobby. On the third floor there's a bridge that runs over the street, connecting the cancer center to Brigham and Women's Hospital, where I'd be staying during transplant.
Being such a huge operation, there were people all over the place. It was busy. Before I met with Dr. Antin, I had to get a lot of blood work done. I guess they had pretty specific requirements for HLA typing. After waiting for a while, we finally were called in to meet with him. Dr. Antin was pretty mellow, a stark contrast to how Dr. McGuirk can be back in KC (but it works out really well because things get done pretty fast). We described my whole situation leading up to this point, and he was pretty nice. He took his time getting to know me, which was cool, considering he is the co-director of such a huge program. We also met with my transplant nurse, Toni. She was pretty nice too. She helped setup the next visit, which was Friday. I had to undergo a series of tests to get approved for transplant.

I had to get blood work again when I arrived at the center on Friday. They had to tests for certain things like HIV, syphilis, CMV, tuberculosis, lime disease, etc,. After that, I had to do a EKG, which was pretty quick, then pulmonary function tests. The pulmonary function tests were slightly uncomfortable, because I had to breathe different ways than I'm used to, several times, and inhaling was still a little tender from the lung collapse. I did OK, considering my right lung was healing. I also met my social worker after the tests. From there, I had to get a chest X-Ray, then get a RVG scan (Gated Blood Pool Scan). For the RVG scan, the nurse drew blood from my arm and added a radioactive substance to my sample. After waiting around for 15 mins, I was called back into another room and put on a table that resembled a PET or CT scan machine. The nuclear technologist then hooked up some EKG wires to my chest and re-injected my radioactive blood into my vein. The table I was on was push under this X-Rayish looking block thing, and then the X-Rayish looking block thing was lowered down so it barely touched my chest. If I was claustrophobic, I'd be going nuts. I lied there for three series of pictures, each one taking approx. 15 mins. It was boring, and I had to sit still, alone in the room most of the time, but it was the last test of the day, so I didn't care much. The point of the test is to check how the left ventricle works in your heart.
After the test, we met up with Ken and Aaron, who are our Boston connections. We also met up with Toni again, who walked us over to Brigham and Women's to tour one of the transplant units. The one we toured was on the 6th floor, and was built in the 80's and renovated in the mid-late 90's. It was one of the few units that had complete HEPA filtration, not just in the rooms. KU's transplant unit also has HEPA filtration. If you leave a piece of bread on the counter, it won't go moldy with this system. The unit was circular, with the rooms on the outside and the nurses' station in the center. Each room was see-through, with glass windows, so the nurses could see if something was wrong. There is a privacy curtain you can control electronically, if you needed it. The unit we toured also had ICU capabilities. Each room had a bathroom, but not every room had a shower in it. Toni explained that back when it was built, showers were thought to be bad for transplant patients. I really liked the tour though, because I could see what I was going to be like for 40+ days. My bald pals already admitted in the rooms were either just chillin' or sleeping. I didn't want to stay there too long though, because I knew the place would get pretty old once I was admitted.
After the tour, Ken peaced out and we took Aaron back to Harvard. We started our trek back to Wilbraham at around 6:30 and the traffic was horrible. The parking lot traffic made sense in the beginning, because of the sheer volume of cars on the road (most only having one passenger, I guess gas prices aren't high enough). As we got out of the Boston area, and past Worchester, the traffic just got stupid though. There was unnecessary braking all over the place and cars were not passing in the passing lane. My dad and I were getting pretty angry too. Due to the traffic, the drive took 30-45 minute longer than it should have.

That's how things are. Now I'm trying to plump myself back up. I lost a lot of weight, because my appetite was low, but I need that poundage for the transplant. On top of that, I'm trying to recondition my body as much as possible, as it'll get deconditioned again.
(note: the post says Wednesday, but I really wrote this on Saturday)