The Rise and Fall of my Respiratory System

Oooo-weee! Look at that PHYSIQUE! Don't worry. To those that want to see more, I'm coming out with a swimsuit hospital calendar - hardware included.

Poke City
So, I left the last post saying that they might put in a chest tube. Well they ended up doing that, but I had to get my new catheter straightened out, before I could get that procedure done. So the third PICC line was done by the IV Team nurses again, and the X-Rays showed that they put it in too far, so one of them had to come back and fix it. She unhooked one of the lumens and reinserted a wire to straighten it out and pulled the whole catheter out some. Afterwards, I got another X-Ray, to see if it was correct. It showed that there was a curl in the line. Finally, they decided to have Radiology take a look at it, possibly taking the new one out and putting in yet another catheter. I wish Radiology would have just done it in the first place.

Before I went to Radiology, I had to get the chest tube in. What the pulmonary doctors did was find a spot right under my right armpit. The tube went in between two ribs, into the muscles that lay underneath and in between the ribs and into the chest. There were 3 people observing the procedure, a nursing student, the head doctor, and another pulmonary doctor, while a fellow was doing a chest tube for the first time. I know, I know, I could have said that I wanted the main doctor to do it, instead of a newcomer, but you gotta learn somewhere, right? When I get to transplant, I want the best, most experienced people looking after me, but for the chest tube, I think it's less critical. The procedure went well... I think. Let's just say it didn't feel good, but it had to be done.

The chest tube hooked up to a waterbox. The box had to sit upright at all times or it'll get screwed up, and have to be replaced. At first, it bubbled, which signified that I had a leak in my partially collapsed lung. The waterbox also collected drainage from my chest. The drainage was light red colored, then later, it turn orangish-yellow. The pulmonary doctors said that the red drainage was from the infection. From the waterbox, there was another tube that hooked up into the wall. It vacuumed excess air, and combined with the pure oxygen I was on, helped the lung re-inflate.

Immediately after getting the chest tube, I went down to Radiology. When I got there, I had to wait a while, because they had two critical emergencies. While in the recovery room, the nurse looked at the dressing of my chest tube and heard the constant bubbling of the waterbox, and knew something was wrong. The fellow who did the procedure didn't do the dressing correctly and there was air going back into my chest. The fellow also forgot to put Vasaline on, and so the nurse fixed everything and gave me a new waterbox. You can see his work in the pic. After that, Radiology was ready for me. When they looked at my arm and chest, they saw that the PICC was in perfectly, so they didn't have to do anything. Good thing for me and them! They were anticipating that they'd have to do another line, but it was quick and easy. I went back to the recovery room, and that's when the chest tube started to get really uncomfortable. If you know me well, sometimes I try and be a champ and ignore pain, but it got kinda bad, so another nurse gave me IV pain medicine, Fentanyl. Ahh, and it was a nice relief.

The past five days
These past five days in the hospital, Fentanyl and Oxycodone have been my two best friends. I was warned to keep my pain under control, and I tried to stay on top of it. But alas, sometimes I tried to be a champ again, and endure the pain, and paid for it dearly afterward. It wasn't smart, but it was only a couple of times. The reason you really need the pain medicine, other than the obvious, is that it allows you to breathe deeper and easier. Even with those pain meds, I'd still feel pain where the lining of the lung meets the tube. Dr. Dwyer, a pulmonary doctor, told me that the lining of the lung is one of the most sensitive areas in the body, and I quote, "It can hurt more than being punched in the balls." It did hurt, but I tried to ignore it, because the pain meds I was on didn't really resolve all the pain. I also didn't want to be put on Dilaudid, unless I really needed to use it. That stuff is basically medical heroine, but 3 times more potent, and I don't have good memories from back in early December, of the withdrawal symptoms I had. Dealing with the chest tube got progressively better, but I'm not gonna lie, it was very uncomfortable. I had three pieces of hardware: the oxygen mask, waterbox, and IV pole. Mobility was difficult. I couldn't take showers, so I became a stinky-stinky pirate. So stinky, when you walked into the room, you automatically go, "Arrrrrrrgh". Okay lame joke, but my mom sponge-bathed me everyday, so that helped. Nothing beats a shower though.
I got X-Rays every morning to check the progress of my lung, and it was getting better and better. I also used this Voldyne 2500, deep breathing exercise contraption to help the inflation. Yesterday, they did a CT scan to see how the infection nodules were doing, so they could get a better picture of my lung than X-Rays. My lung was fully inflated and the nodules were strinking. Today, they pulled the chest tube out. It feels so good to be free now, that thing was annoying, to say the least. The good news is that Dr. Ganguly said that I can travel soon, and that I can probably be ready for transplant in the coming weeks. All the other doctors that have seen me, pulmonary and infectious disease, were also very optimistic. The pulmonary doctors, however, aren't to keen on flying, because my lung might collapse again with the change in air pressure, so I might go road trippin'.

Right here, right now
I feel pretty good now. I can breathe normally now, but it's still a little tender. My biggest problem is all the fluids floating around in my body. They weighed me the other day and I gained 15 pounds. I was like, 'how the hell did I gain that much in two days?!' They gave me Lasix the past 2 days to try and deal with it. If you don't know what Lasix is, it's like a laxative, but for urine. So it makes to go like every 15 minutes for 2-3 hours. I felt like that Detrol commercial, that has that catchy toon, "Gotta go, gotta go, gotta go right now". My platelet count was also high, so they are giving me a blood thinning shot in the stomach twice a day, to eliminate the blood clot in my left arm. It'll be nice once it's gone, so I don't have to be a one-armed bandit anymore. There is still swelling from the fluids though, especially in my feet. They look like monster feet and stupid. I guess my protein is low, so I gotta eat more of that. The nurses made me some tasty protein shakes today. I guess that's supposed to cure my sasquatch feet. So that's where I'm at! I get another CT scan next week to see the progress of the infection, but Dr. Ganguly said I might not need anymore chemo, since my bone marrow results were so good from last week.

I would like to mention the Light the Night Walk my friend Jake Olson is organizing back in Lawrence. When I read about the event and saw the site, I got teary eyed. I'm usually pretty good about keeping my emotions intact, even throughout this whole cancer ordeal the past three years. I'll admit, I silently cried when I first was diagnosed on Nov. 22, 2005. I cried at the end of my first semester back from intense chemo, when my final project for design 2 flopped and I felt helpless because I was getting chemo every morning in Kansas City, and spent the evenings working on the project to the best of my ability. I cried and was in another world when I had bone pain at the end of last year; it was the worst pain I've ever felt in my life. It sucked when I relapsed, but I knew what to expect. Finally, I got a little teary eyed when I saw that my friends were organizing an event in my honor, the same way I got teary eyed when my older brother, Kris, organized the Crux Against Cancer concerts. Big girls don't cry, but I'm a big boy now (was I a girl before? If my cord blood donor is a girl and I end up having her DNA, then I will have a girl's DNA, and I expect to cry more). I feel unworthy of all this attention, but knowing that there are people outside my closest group of friends, pulling for me makes me want to beat this thing even more. I don't know how to say how much I appreciate all the thoughts and prayers and hope, but I do. Here's the website to the event: http://teams.lightthenight.org/Deliciousness .

Hope Lodge and Catheter Trouble (Make it Double)

Chest Pain Fiasco
So the whole chest pain hospital stay lasted about a week, before I was able to be discharged. They figured out that it might be a bacterial infection, instead of a viral one, so they put be on stronger anti-bacterial medications, while still covering the possible fungal infections. Since there is a blood clot in my left arm (the swollen arm on the right in the picture), they think some of that lodged into the lung causing bacterial problems. I always wondered why the Infectious Disease Doctors ask so many questions like: "Do you smoke?" "Your neck been sore lately" "Have you been on a farm?" "no I haven't really" "Have you been playing with the little critters on that farm" "Uh, I haven't been on a farm..." When they told me that it might be bacteria their expressions were a lot less puzzled.

About that clot in my left arm - they found out there was an infection in my blood. Then they found out my first PICC Line (Peripherally Inserted Central Catheter) was infected, so they pulled it. I guess it made a blood clot in that arm, so my left arm is still swollen, giving the false appearance that I've got some guns (or gun because it's only one arm). Hey but I'm fine with that, well not really. It looks kinda stupid. Anyway, another IV Team nurse put another PICC in my right arm. She put it kind of low, but we had a fun conversation, although she was a little erratic with her supplies; she didn't have them all ready.

This PICC worked fine at first, but I realized that there was moisture coming from the inside. At first I thought it was sweat, since there are a lot of sweat glands near your elbow. When the Gastrointestinal Doctor talked to me about the air leaking out my lungs and that it would not develop into a major problem, I showed them the moisture, and they thought it was sweat too. The same with the Infectious Disease Doctors, and they noticed the condensation underneath the dressing. Other than that I felt fine, and Dr. Ganguly let me know I was probably going to get discharged the following day, which was Friday, Sept. 12th. I really didn't feel the chest pain from the air leakage anymore. He also put me on penicillin for the bacteria. For my leg pain, he prescribed oxycontin and celebrex (for the inflamation - a weaker combination than the diladud and celebrex, last November when I was here for a week, with severe bone pain, the worst pain I've felt in my life by far - you probably saw me walk with a cane afterward).

That night, I noticed fluid leaking out my dressing. I told the night nurse, and she was equally confused. She made a block of gauze and wrapped it with a self-adhesive bandage. In the morning it was saturated and the dressing was coming off. All of this was not good. The whole reason for a dressing is to protect against infection for the insertion site. I showed my new nurse and Dr. Ganguly and the dressing got changed. I was ready do be discharged by 3pm, but we had to wait for the home health nurse to show us how to use the portable IV pump at 7pm, so that we could self-administer the penicillin (which ran 24/7). So we waited and waited and waited and watched the weather get bad outside. On the news, they reported all these small tornadoes down south, heading north. We really wanted to get out of there. She finally showed up on time, but briefly went over the equipment. She said she meet us tomorrow morning to go over every thing, plus the paperwork which would take an hour.

American Cancer Society's Hope Lodge

My mom and I decided to stay at the local Hope Lodge, which was only 10 minutes away from KU Med and the Outpatient Cancer Center. It is more convenient than commuting from Lawrence, plus we were unsure if it was safe, with my lung issues, to stay in that old krusty apartment. Oh, did I mention that it's free? Yeah that's cool too. It's a pretty nice place though, and everything is donated.
On the ground floor there is a communal kitchen that has 4 stoves and four sinks. There is a central pantry area where you get a cubby with your name on it for food, plus there is a communal one if you don't have food. There are huge refrigerators that act the same. Outside of that there is a dining area, and next to that there is a lounge area where they do weekly activities. In the basement there is a workout room, a media room, and a couple of game rooms. The workout room just has like 2 treadmills I think. The media room has a TON of movies, and a ton of VHS, but all donated. Although it's VHS city, the player is a DVD/VHS combo one, so you still don't have to feel like a caveman. There's a popcorn machine too. The game rooms have like basketball, pool, shuffleboard, poker, etc.,. The 2nd floor of the Hope Lodge is for Bone Marrow Transplant patients. They never leave their rooms, and there's a good reason why. On the third floor is where my mom and I be at. Our room is basically a hotel room. It has an enormous bathroom though, and small walk-closet. At the end of the hallway is a reading room. In all, the place is pretty nice, and I just found out how to access the Wifi.

The same thing with my PICC Line happened that night. It kept leaking. We looked at the BIO Patch and it was saturated. It made a wetmark on my bed. The next day we met with the Home Nurse and she checked it. And told us how to use the Penicillin machine I was already using. Then she checked the PICC Line dressing, concluding that it had to be leaking from within, because she tested each lumen and didn't see anything come out. She changed my dressing as well. We had another appointment that day at the Outpatient Cancer Center to get Caspofungan, a very strong anti-fungal that's administered through IV. We had to get this type of anti-fungal, because the pill, of the three pharmacies we checked, none carried ZFEND. It's a $5000 medication, but the co-pay is $60, but not many pharmacies have them ready until the week, or ever. At the center, my nurse there checked the IV and also saw that it was coming from within, so she had to give me the medication through my vein. At that point the dressing was saturated, so she changed my dressing yet again. She called up Dr. Ganguly about it and they stopped the penicillin altogether. I had to go back to the hospital to receive this new anti-bacteria med through the IV the nurse at the Outpatient Center made. The nurse at the Hospital administered it and ALSO checked the dressing and changed it.

The next morning we went back to the outpatient center to get the same stuff. The nurse there saw the that the BIO patch was still saturated even though we stopped using it, so she changed the dressing. That's FIVE nurses that have seen that the PICC Line sucks! I've had 2 line prior to these past 2 lines, and they've lasted 2 months. The old ones allowed me to take chemo to class (while wearing a mask and kids looking at me funny, and me feeling like a joke) and do my thang without any problems. I was able to take care of them with the help of my roommate David at home, too. The old ones were also done by Radiologists, not a IV Team Nurse, so they had a team of dudes getting things done right.

When we got home I got real sweaty, but my temperature was fine. An hour later I got really freakin' cold, cold enough to shake it like a salt shaker (in the words of Petey Pablo). My teeth were chattering and my whole body was shaking. This time my temp was kind of low, so I went back to the hospital for monitoring. My temp went back to normal, so my assessment is that my body is just reacting to all the medications I've been getting.

This is where I'm at now. I've gotten the sweats, followed by the chills since then. I also stayed the night here. Last night they had the IV Team look at my PICC, and guess what? It was the same nurse that put it in. Her assessment after checking it not as thorough as some others' were: that it might be leaking (it hadn't been used in a while), and that it still works. She kind of got defensive about too, when I said five other nurses evaluated her work. She also changed the dressing and put a whole bunch of gauze over the BIO patch to catch the saturation. Wow. Here's a pic of her work.
Oxygen and a new PICC
Today I got another X-Ray of my chest. The Pulmonary Doctors saw that the air that had been escaping had gotten a little worst, but it wasn't going away. Right now I'm on oxygen, to try to have more efficient air intake, but if that doesn't work I'm going to have to get a tube inserted into my side that connects to a box of water to let the air escape. The IV Team also showed back up and took out the faulty line and placed a new one. Hopefully this one doesn't give me any problems. It's higher up and pretty sore right now though. I'll be here in the hospital for a couple more days now.
I just want this infection crap to be over with so I can make it to transplant where the real battle begins.

Fast Times at KU Med

Wow, that smile looks forced.

I've been in and out of the hospital this past month, but mostly in. The remission protocol they used (COG) lasted for 29 days. Initially, I got the chemos: Vincristine through IV, PEG-Asparaginase through muscle (something I have a lot of), and cytarabine through the spine. For the rest of the week I'd just chill out on other medications, while the chemotherapy does its work. I've had vincristine plenty of times before, just not at the same dosage repeatedly. I think I've had asparaginase before, but in a different form, called L-Asparaginase. With the PEG, since I have so much muscle, they had to get me where I was most meaty. Yeah that's right my hindparts. I've also had chemotherapy in the spine before, and it's the worst. I've such bad headaches from these I couldn't move my neck. I'd have to turn at the waist to see something. The funny thing about intrathecal treatments is that caffiene, among other things, works the best to thwart the side-effects, even better than tylenol. This time around they weren't too bad, but I still had headaches.

The other medications I was taking were just anti-fungal, anti-viral, anti-bacterial, vitamins to curb the neuropathy, and prednisone. Ahh, prednisone, the catabolic steroid that makes your face all poofy.

The chemo worked pretty hard pretty fast, and I had trouble healing at first, but towards the end of the protocol, I was doing fine. It sucked though, because I was unable to heal mouth sores, and I had some bowel problems that involved blood. Other than that, thngs were going pretty smoothly.

In a twisted way, the time I relaspsed was good, because it was during the school transitional period. I had just moved into my new place that was close so to campus and I had my classes all lined up. I was set. Fortunately, I was able to drop classes, notify professors that I wasn't going to be around, and notify financial aid before tuition deadline. This was all the unimportant stuff. What was really cool is that I was able to catch people before they left. Having visitors really helped me take my mind off what was going on and be human - enjoying company and having fun. Thanks to everyone that continues to pray and think about me. I can't defeat this cancer thing alone. I need all the help that I can get!

I didn't try to ask for much, but some sweet visitors brought me some sweet food. I mean if I'm going to be cooped up in KC for a month, gimme dat Barbeque! Regrettably, I paid for it later in the bathroom (remember those bowel problems I was talking about earlier). Let's just say it was worth it- it hurt so good!

My days here were pretty regimented. I'd wake up at 4 a.m. (you never get good sleep in the hospital), do some Active-Isolated stretching, then at 5 a.m. I'd grab my IPod and IV pole and explore KU Med. At first it was me just getting lost. There's a lot of bridges here that connect to research departments and classrooms on several floors. I eventually found a route that was the coolest to walk. As time went on though, my walks got slower and slower. I was basically speedwalking in the beginning, minus the sexy hip movements professionals do. Now that I have some bone pain, I'm not much walking anymore. There were some interesting finds in the random hallways though. I found the sequence of Doctor and Nurse graduating class photos dating back to 1906. For me, it was really cool to see the progression of mustaches. I even saw a jherry curl, all wet and delicious.

After my walks I'd order breakfast, which usually consisted of biscuits and gravy. KU Med has really good food for hospital food. Even though I know the menu backwards and forwards now, I still wouldn't mind some of the stuff at home, namely biscuits and gravy.

I also drew a lot, surfed the net, and played SimCity 4 (a good time waster). I also had a some good donated reading material. At the start of this protocol, I'd spend the evenings watching the olympics. Swimming was nuts. Michael Phelps was nuts. You always gotta watch gymnastics. And then there's Track & Field! I kind of spoiled the network coverage of T&F because I'd look at the results that morning, and feel obligated to watch the races at night, but it was worth it. Usain Bolt was refreshing upcoming star. Kenensia Bekele was inhuman, and so was the Men's Marathon - lightning fast! There was one gold medalist that went under the radar though, but when I heard his story and further researched him, it gave me more confidence for the days ahead. Maarten van der Weijden from the Netherlands won the 10km Open Water Swim. He had leukemia and had a stem cell transplant around the same age as I am now. Seven years later - Olympic Gold. After the sweatness that is the Olympics was over, late night television became plagued with the Democratic and Republican national conventions. Seriously though, those crazed people cannot possibly be having that good of a time. Oh well, I guess it's best to be informed, but sometimes I wish I wasn't.

The nursing staff and aides are pretty cool here. I hope I wasn't too much of a nusance for them, but they are a fun group. I've gotten to know some of them pretty well. One of my nurses was a 2-time Lymphoma survivor - five years out. A lot of the aides are nursing students my age, so they're easy to talk to and nice.

I was able to be discharged a couple of times (for good behavior), which was good, because I could recharge with my family at my apartment. This past week though, we commuted everyday from Lawrence to the Outpatient cancer center in Westwood. On day 29, which was last Friday, I got my last spinal chemo and later that afternoon, the results from a bone marrow biopsy. Bone marrow biospies are the only way they can acurately check the amount of cancerous leukemic blasts. So basically, I was there to see if the past month's chemo put me back into remission. Dr. Abhyankar told me I had dropped from 65% blasts to 6%. You need it to be 4-5% to be ready for transplant. I found out later that the 6% was really 2%; ready for transplant!! * (edit: some verification from the doctor today said that I was in 'dormant remission, but not remission) I had a slight hiccup though that afternoon, when we were waiting for the results. I started having a stitch under my right rib, that made my breathing more shallow, but when I laid down, it resolved. I told the medical staff and Julie the NP thought it might be gas. At that point I was feeling really ridiculous, taking up this room just for some gas? C'mon Darren get you head out your.... Anyways, the combination of medications to releave gas didn't work, so I got a chest X-Ray. The results showed that I had some nodules in that lung that Abhyankar thought was probably a fungal infection, but just to be sure, he needed a CT Scan. Well, the CT Scanner at the outpatient clinic was done for the day, because it was like 7pm at that point, so I got readmitted to the Hospital that night for testing. I kinda wished it would've been gas.

From the CT Scan they knew that the infection was invasive aspergillosis. The fungus had burrowed through 4 pen-tip size parts in my lung. The pain I was feeling is from the air escaping through those holes. Luckily for me, the air was going towards the trachea, because if it was going away from center, there is a high risk of a lung collapsing. Phew! Well I was ready for transplant, but they have to get rid of the infection before I do it, because if they wipe out all my bone marrow, the infection would take over my whole body. In the comicbook world, I'd become AspergillosisMan, spewing fungus into jokers lungs who deserve it! I think I'll pass on that one though and get on with the program.

They wanted to make sure and secure that whole chestal-region-area STAT. So I just got done ordering my breakfast, consisting of biscuits and gravy, eggs, sausage, and all that Delicious stuff, when Dr. Ganguly barges in and tells me I can't eat or drink because I have to do a bronchoscopy. Damn, and it's scheduled at 11:30.

My mom devoured my meal, as I sat gently sobbing. Alone.

With the bronchoscopy, they had me first numb my mouth by smoking some substance. Then they knocked me out and told me I was done. Later, I still had to get some tests done. They wanted to make sure I wasn't leaking out my esophogus. So the dude says, "here take this cup of water". I gladly do so because I'm dehydrated as hell. "I want you to take a big gulp and on the count of 3, swallow". Right when that liquid touched my tongue I knew this guy played me. It tasted like an extremely broken down version of robutussin, disgusting. I had to do that 2 more times, then the same with some equally-nasty milky looking stuff. I was finally able to eat at 3, which is not bad because I'm glad they got all the tests done fast. It's just that I got tricked into thinking that stuff was water. Later on that night, I developed bone pain in my knees, shins and ankles, so they gave me morphine and oxycodone. By morning I felt soooo lousy. I was dehydrated, and I had all that sedation medication and pain medication in me, not to mention that special water.

So that's what's happening now. I'm chillin back at KU Med. I can hardly walk because the bone pain. It's really hard to concentrate on this blog with the pain medications I'm on. Hopefully this infections ends soon, so I can get this cord blood transfusion over with. It's gonna be the hardest thing I'll probably ever do.
P.S. Thank you Dale for helping me take photos last night. I got bored and had to do this though. I think you're taking your facial hair in the wrong direction. YOU COULD LOOK LIKE TOM SELLECK MAN!
no but seriously thanks for chillin' with me last night.

August 7, 2008 - it came back...

Sitting here in the hospital, not able to go asleep because they wake you up every 4 hours, I think it's a good time to just lay out my whole situation thus far.

As the title suggests, it was the 7th, and I just doing my bi-weekly blood work/check up at the KU Outpatient Cancer Center in Westwood. I felt fine that day, and was preparing to go to a Woodturning Workshop I got a scholarship to go to at the Anderson Ranch Arts Center outside of Aspen,CO. School was about to start and I was enrolled in 16 hours; I was getting really charged up to make some sweet things and learn. I also had moved into a 2-bedroom duplex right on campus for $490 - a steal if you ask me, because that 2nd bedroom was going to be my studio. Let's just say, I was ready to kick another semester's ass.

The Complete Blood Count test (CBC) showed some abnormalities unfortunately, and prompted my doctors to do a Bone Marrow Biopsy stat. Five months earlier, I had one done because Dr. McGuirk found a new study that said if you had certain microscopic markers in your DNA, you would relaspse. He sent it to the Mayo Clinic, where the research is being done, and my results came back positive. McGuirk's assessment was that since it's a new study and that there hasn't been enough evidence, I shouldn't worry about it for now. The study might be inconclusive.

Well with this study in the back of his mind and the abnormalities in my CBC, the word 'relapse' was on my doctors' tongues. The cancer came back, when I only had 2 more months of maintenance chemotherapy left (low dosage stuff I've been taking the past 2 years).

Why did it come back? The cancerous leukemic blasts got used to the medications I was taking. I got admitted at KU Med that night, while my team of BMT (Bone Marrow Transplant) doctors feverishly decided on what protocol they should use to bring me back into remission. The only option for continued life for me after that is some sort of stem cell transplant (bone, cord, stem).

Dr. Abhyankar decided that I should be put on a protocal called COG. It's a pediatric chemo regimen that's intense, but since I'm in that borderline kid-adult age, they though I could handle it. Well, some of my adult qualities won over and they had to monitor my fribrinogen levels so that I didn't bleed or clot. Fibrinogen is a protein that helps synthesize platelets, fyi.

My parents came out immediately and we had a conversation with our doctors about what options I have.

The transplant option all doctors seek out first is from a siblings' marrow. Unfortunately, my full-blooded brother Kris was not a match. After that doctors want an unrelated bone marrow donor, that is someone in the world wide registy that sufficiently matches your DNA (ideally as close to 100% as possible). They looked, but my results coming in where abysmal. If you are of a homogenious background then you have a better chance, but since I'm mixed raced, Black and Asian (specifically Filipino), it's astronomically impossible to find someone out there that is registered, or who even exists. Minorities in general dont have good representation in the world wide bone marrow registry.

The second option, which sounds the most promising was a cord blood transplant. The stem cell donation occurs here at childbirth. These umbilical cords are rich with stem cells. The only problem for me is that one cord isn't big enough. I'm 6'2.75" all man... all loving. The other problem is it takes roughly 90 days for your body to accept the new marrow, and during that time you have absolutely no immune system. The littlest thing will kill you. The good news is that they do double-cord transplants, which roughly cuts that engraftment time in half. That morning however, the transplant coordinators were drawing up blanks for finding suitable cords. That was a jab to the kidney.

The third, highly experimental, highly developemental option is a mismatched donor, where they take bone marrow from both my parents and splice them somehow. They only try these in 3 places in the world; Seattle, Johns Hopkins in Baltimore, and in Paris. If it came to this, I'd basically be a guinea pig.
To say the least, it was tough.

Later that afternoon though, we got a call that they found 2 suitable cords, and within the next day they had gotten several more from the world wide registry. hallelujah!!

Pros and Cons of Bone Marrow Transplants to Cord Blood Transplants
The reason why Donors are prefered first is that the engraftment period is shorter and they have been done longer. With cords, it takes longer, but there is less of a chance for Graft Versus Host Disease rejection. The other day I met sweat girl, Emily, who was 6 months out from her cord blood transplant. It was both encouraging and refreshing to see that she was doing really well with no GVHD. We talked for like 2 hours, and she just explained everything that I would expect and more. I've felt all the pain, nausea, vomiting, weekness, but from what she was telling me it's all I had already experienced x 10. Again, it was an awesome encounter - that we were able to talk on a level and relate similar cancer experiences. We both knew another BMT patient our age, Racheal, and it was cool that we have this little 'Transplant Connection'.

Anyways, back to pros and cons. When they wipe out my bone marrow through expreme chemotherapy and radiation (which I haven't had before), cord blood stems cells more easily accepted into your body. The only problem is that since it's from a baby. I have to start my defenses all over again. These 21 years of built up immunity is thrown out the window. Because of this, I have to be re-introduced to world slowly: getting revaccinated, staying away from big groups of people, and quite possibly. . . . the need for a wetnurse. What can I say? It's a win-win situation. Cheers!

Introduction

This is just the introduction of the blog I want to do during my time in isolation. I had attempted one before on Carepages and it helped me sort out my thoughts and inform people at the same time pretty well, but I increasingly felt overwhelmed, unmotivated, and depressed over having to keep up with updates. It eventually died, because it turned into such a daunting responsibility. I also questioned my integrity, because I sugar-coated a lot of the nitty-gritty that was really going on with chemotherapy treatments.

With this blog, I'm confident that it wont suffer the same defeat as the last, because not only am I going to put health updates and my process through transplant on here, but whatever else I'm doing in isolation.

It's going to be hard as hell these next coming months; I won't be able to do it alone. I ask you to join me as beating cancer, beating Stage 4 Acute Lymphoblastic-Leukemia and conquering a Cord Transplant is not a solo effort. We can do this and show the strength of humanity. Let's do this!