Much to deliberate...

It's been awhile, and a lot has happened, but before i say anything, I've got to say that I fucking love everybody(most everybody) in this town, and many outside of this town. Excuse the strong language, it's just, I feel strongly about most people. I feel closer to everybody that I have known since this whole ordeal. I have seen people that I haven't seen in years and I couldn't be happier to have all these people in my life. Not working for the next year sucks, but it's giving me more time to spend with people I love, and that is awesome.

Last time you heard from me I was just getting out of the hospital. That was 40 of the longest days I have ever experienced. I've been out for about 2 weeks now and it has seemed like 2 days. It sucks how fast it is going by, but I'm enjoying every second of it. The weather has been damn near perfect just about every day I have been back. Getting on a bike for the first time in 2 months was great, did a 2.5 hour ride the other day. Getting winded quickly, but I've got to make up for lost muscle mass. A couple of days after I was released we had the marrow donor drive downtown, and the turnout was HUUUGE. At a normal drive, about 100 people show up, and they usually get around 30 people in the registry. They have to turn people away on account of certain health issues, not allowing them to donate. At our drive, 1000 people showed up and we got around 300 in the registry. I couldn't believe it. I saw all sorts of people I have known all my life, some i just met recently, and many I have never known but put everything they could into helping out. Many members from Cornerstone church helped set up the drive and I couldn't be more thankful to all these awesome folks. I need to send thanks out to so many people for that day, everybody did their part to help things go smoothly. So, if you don't hear from me, I'm sorry and THANK YOU!

Anyway, when I was released I was told I would be out for 4-5 weeks, and come back for about a month, whether it be for the transplant (if they had a match) or for another round of chemotherapy (because I can't go too long without treatment or the leukemia cells will start to grow and it could be dangerous for me). Anyway, I have gone to clinic at UCSF a couple times since I was released to draw blood and such, talk to doctors about the plan and whatnot, and I was there yesterday, 2 weeks after discharge, to get another bone marrow biopsy (my 4th one so far) where they test my bone marrow and chip off a piece of bone with this big ass corkscrew looking needle thing to see where the leukemia is at. When I was discharged the Leukemia was at about 7%, which isn't quite considered remission, but damn close. When they drew my blood last week, I guess the doc found some funny looking cells in the circulating blood, which were most likely leukemia cells, and he was worried by this, so when I went in for the biopsy yesterday, I was told some pretty scary news. He told me that because he saw those cells he wanted me to start another chemo treatment the next day.. TODAY, 2 WEEKS AFTER I JUST GOT OUT!!! when I was told I would be out for a month. He told me there was 2 options, and it depended on the results of the biopsy. If the biopsy showed over 20% leukemia, I would have to come in the next day, and stay for another month for more high-dose chemo. not an ideal situation at all. If it showed under 20% he wanted to do an outpatient low-dose chemo, which is a 5 day treatment, no overnight stays, a visit everyday for 5 days and it is not as harsh on my body, no bad side effects. so it was 2 huge extremes and I was real worried all day. The doctor ended up calling me late yesterday afternoon and said... the biopsy showed 7% still. huge relief. I have another month of freedom. also, more good news. they have a match. multiple matches. Because they have so many matches they are being picky and getting the absolute perfect match. I will most likely go in for transplant late june. I am so happy at all the news lately, I don't know how to show or explain it. Speechless, mostly.

So with all this good news, I am trying to spend my valuable time out of the hospital doing anything and everything that is fun, enjoying people I love, the outdoors/nature, and being happy at any cost. Since I have been out everything smells/tastes/is better. If I learned anything since all of this it is to not waste any time being unhappy and do only what makes you feel good. There are some things I need to do to work on this new found philosophy of mine, but it's goin. If you're reading this, I'd most likely enjoy getting lunch or something else fun with you while I'm out, so call me. To mostly everyone: I love you.

"Be who you are and say what you feel because those who mind don't matter and those who matter don't mind" -Dr. Suess

the end of an era

I'm comin home today. 40 days. We did a bone marrow biopsy and it came back as 7% Leukemia cells which is a significant difference than last time, and fantastic news. It's not considered remission, but damn close. I believe the next step, if they have a match soon enough, is to jump straight into transplant, hopefully in June. I have an appointment with the doc on friday to discuss the next step, so we'll see. I have been eating real food for the past week since my blood counts have been up, and it has made the last week go by much faster, and much tastier. I am just waiting to get a port line put in my chest, and the picc line taken out of my arm. the port will be a direct line that goes right over my heart, so they can access that whenever i need medicine, or anything else. apparantly I wont have anyhing outside of the skin, it will be like a lego size deal under my skin that they will poke into when i need to get meds, which is totally wierd, but it's better than having these wacky cords hanging from me. I dont have much else to say other than I'm ready to bail out of this place. I will be back in town tonight sometime. Can't wait to see everybody.

no use crying over spilled milk

33 days now... they are telling me maybe another week. hopefully i will get out on tuesday or wednesday. but it depends on how the bone marrow biopsy goes. in other news, my blood counts are starting to rise pretty rapidly, which they say is good news so that they can do the biopsy on monday. but they cant really tell anything until the biopsy results come back. but so far, so good. this stay has been much longer than originally expected, but what can ya do? ill tell you what you can do, think of all the people that care and have put me in their prayers and sent me kind thoughts and wishes. its crazy how many people have sent me some sort of kind message in many different forms. thank you to all, and im sorry if i havnt gottten back to you, its tough with so many people. anywho, I have learned to appreciate everything about life so much more through all of this, cause it can all be taken away from you in an instant.

I miss stressing about work. I used to come home all bummed out, worrying if things got ordered or if somebody was gonna be late. working 55 hours a week. I was stressed but not worrying about anything sucks. id like to have something to worry about. as wierd as that sounds. i miss the pickle shop. but im gonna have plenty to worry about in about a year. The whole family behind the company has become like a second family to me, and they are doing great things for me. So, the livermore pickles is the busiest shop in the franchise, and there is roughly 60 stores. busiest since day one, nobody can touch it. I had been basically running the busiest store for the past 4 months or so. Got promoted to manager and ran it head to toe, with the help of the old polar bear, Tim. anyway, Tims brother in law, Frank, is the founder of the company, and after we found out about all of this leukemia business, frank called me up and told me how much he appreciates everything ive done for the store, and that when all this is over to pick a city, and they would get me a store.... ABUUUUHHH?!?! i couldnt believe it. He's going to front the operation and i would pay him back over time. This is the American dream. I can't believe i will be owning my own store in around a year or so. Im thinking berkeley, but who knows. These are great people and i couldnt be more thankful for everything theyve done for me. looking forward to my own store, but first ive gotta come back to livermore for a couple months and save their ass. i hear shits rusty without ol faithful. jokes and jokes.. im sure theyre doing fine....

Besides missing the work atmosphere, as i wont be working for about a year, i am looking forward to printing mass amounts of shirts. i never had the time to before, working so much. so hopefully this next year i will be printing my ass off. Wild Styles will be taking off in no time, as long as my artists get to work! also this next year, since i wont be working, so im trying to grow my beard out for the whole time im not working. I mean the hair just fell out, im not sure how long its gonna take to start coming back, but once it starts comin back, aint nothin gonna stop it. im goin caveman on it. i feel, i dont know, stronger with a beard. like i can run faster and jump higher, have the strength of 3..no 5 bears!

So my boss Timbo, and his nutty cousin Butch, were kind enough to replace the carpets in my house, for free. and they got a dog door installed for ol lucy. again, solid dudes, cant be more grateful. moms gave me their couch, and pops replaced the blinds and shades. they are sending their gardeners over to clean out the backyard tomorrow also. im gonna come back to a sterile, solid new place. Thank you Tim and Butch, Mom and Dad, and Hope, and everybody else who helped move stuff out of the house for the carpets to get put in. Totally solid.

ive been makin the rounds..

so my hopes of getting out of here on tuesday were shot down like, well, i dont know, i couldnt think of much to compare. except fish in a barrel. yeah thats the one. my dreams of getting out of here are the fish and and this hospital is the giant smoking gun shooting all these helpless fish. but i mean, i somewhat expected it so im not too bummed. just so ready to come home. and at least i dont feel like shit anymore. the only thing bothering me is my peeling dry hands and my one blurry eye. they say this will get better when my blood counts come up. but they say a lot. a lot of things are depending on when my blood counts come up. its taking awhile for the counts to come up, but this can be normal, nobody is worried yet. sometimes they just take awhile to come up, sometimes its because the toxicity from the high-dose chemo i recieved is holding the counts back from rising, they also say the counts could not be rising due to residual disease still residing in the bone marrow, leukemia cells hangin out, stopping the marrow from creating good cells. sucks just waiting, it seems like nobody knows whats going on, but how could they. taking it day by day. eventually, somethings gotta give and they will have more info about the plan of attack in the next few days. until then im just watching the clock, and the discovery channel but its always deadliest catch or some bullshit ghost hunter show. need to just keep watching the sopranos, its the only good television i can find these days.

so anywho, some kind folks have helped set up the bone marrow donor drive, as most of you probably already know, for those that don't. May 8th downtown livermore, in the old alehouse building. the owners have been kind enough to let us use the old building for a generous cause. hopefully i will be outta here in time and well enough to hang that day. garrett roads has been setting up some bands to play during the event, and tim and kathy, pickles owners, are getting some samiches for the day. many thanks to everyone involved in helping set this up. i believe the turn out will be huge, and i cant tell you how much that means to me. if not for me, its rad that so many people are willing to join the registry to help somebody else in the same situation.

had a wild dream the other night, i was hanging out with a magician. he taught me how to 'disappear'. it was more or less teleporting. he gave me this circular glass like monacle type deal, that i had to hold up, look through and kinda snap my finger, and boom, smoke appears, and i disappear. anyway we were teleporting everywhere, showin tricks to mass millions, more so about a hundred or so. anyway, through all this teleporting, i lost the magician i was hangin with, to much travel. i didnt have my skills honed, and i lost the touch. no magician by my side to help me out. i was running around trying to disappear, no dice. i kept lookin through this glass snappin my fingers, its like how hard could it be? couldnt do it, got stressed and woke up.

anyway, i think i should be outta here sometime soon, i dont want to say a day to look forward to, cause nobody knows. but when im out, im going out to breakfast lunch and dinner everyday. so if you want to grub ever, call me, im down. ive got to have a real good month before i go back for transplant, cause ill be real fragile after that, assuming it will be in june, but i dont want to assume that, even though they said they think it will be real soon that they find a match, but when i get my hopes up i just gotta think about that fish in a barrel routine. anywho, when im outta here, lets hang.

Light at the end of the tunnel...

26 days and counting... im goin nuts in here, ready to come home. hopefully i will be coming home tuesday if everything is going according to plan. i need my blood counts to come up and the bone marrow biopsy to look alright in order for me to get outta here. anywho, i finally got some good news, it seemed like every news we have gotten so far has been infavourable, and taken the harder route. so my sister was not a match, and that was a total bummer, but they told me that my HLA type for the bone marrow transplant is very common, and they think it is going to be very easy/quick to find a match, which is sooooo relieving. i thought i might have to wait like 6 months, doing chemo every month, waiting for a match, but they said they think they have as many as 300 preliminary matches already, just need to narrow it down and find the best, get some blood work from them and could possibly get the transplant going as soon as june. this news could not have come at a better time. its lookin like maybe a 31 day stay, i cant wait to get out of here. but i dont want to get my hopes up if my blood counts dont go up soon enough or something. i should be out for about a month, and if they have a match, come back for like a 35 day stay for the transplant in june, which sucks cuz its another long stupid stay, but at least we will getting the ball rolling on getting this disease out of me. thats all for now, gonna get back to watching more sopranos, watched 2 full seasons in a week, it has helped pass time...

Bumpy Ass rd.

it seems that this whole deal has taken the hardest way possible of getting better. every news we have gotten lately has been infavourable, but they have treatment plans for just about everything. i mean, it could be worse, but it could also be a lot easier. life isnt always easy. things gets rough you get tough. anywho, im saying all of this because we just found out that my sister is not a match. i wasnt banking on it, on account of it was only a 25% chance. but it sure wouldve been nice. i will just have to keep comin in for chemo every month until we find a match. outpatient chemo though, no more over night stays until the transplant, which will probably be a 35-40 day stay. right now ive been here for 24 days, and if things go according to plan i will be out in 8. hopefully next tuesday. it just sucks waiting to know if the leukemia has grown, but ive got to hope for the best.

Side effects have gotten better, sort of. the fluid only diet has given my guts time to heal, so thats better. but the past for days i have had a fever of 103 on and off, keeping me pretty bed-ridden and exhausted. they hooked me up with all sorts of antibiotics to help stop the fever, and finally the fever has stopped, but im showing some sort of allergic reaction to who knows which medicine. my back is completely dark red with spots and it has spread to my chest, stomach, and legs. milllions of red dots. its somewhat itchy, and sensitive to hot water in the shower, but you can bet theyve got a medicine to fix the itch, among other things. Ive been getting a shot in my stomach every day the past 5 days, and probably some 4 or so days more, called Neupogen. its supposed to raise why white blood count and other things. which means i wont be feelin so crappy either, as the higher blood count will help heal all these ugly side effects.

Not much else for now, resting trying to get better. more soon.

plan b, among other things

Despite the upsetting news a few days back, im feeling pretty good about the doctor's new plan for treatment. As you may or may not know, when i came in here the percentage of leukemia cells in my bone marrow was ab out 70-80%. after the bone marrow biopsy the other day, a week after the chemo, i was not in remission (less than 5%), it was about 20-30. My doctor, Dr. Martin, solid dude, came in earlier and gave me a briefing of his plan. apparantley good bone marrow cells grow much faster than the leukemia cells. and i guess the biopsy they did when i got here was 70-80% of a full body of bone marrow, the chemotherapy basically killed all my bone marrow, and the new biopsy was 20-30% of a near empty bone, so he is going to have me basically rest, and have my blood counts come back up for the next 2 weeks, hoping that the good cells will fill my bone marrow much quicker than the bad, and i could even be in remission then, who knows. the ideal situation then would be, that the leukemia does not grow back fast, and that i am in remission, or even about at 15-20% he said he would still jump into the bone marrow transplant at that percentage, giving that my sister is a match. i would go home in 2 weeks, if in remission, hang out for a couple weeks at home, then come right back for the transplant. Although i really hope that i am in remission, giving that the GvH disease is more likely to show up when the leukemia isnt at knocked down as planned, and then i would come back for the outpatient chemo about 1-2 months after the transplant, if the leukemia is not completely gone. but lets keep our fingers crossed.

Now there is also a possibility that the leukemia could grow back rapidly, which they would notice almost immediately via microscope, on account of suspicious things such as a high white blood count, etc, then we would go into another round of chemo, only it would be an outpatient chemo, meaning i could go home if my counts are looking ok, come into the hospital every day for 10 days, for a couple of hours each time, getting an iv medicine and a pill. and we would do that, go home to beef up, and feel better, get my body less toxic from chemo for the transplant. and if my sister isnt a match, i would repeat this process until we found a match. so either way im looking at getting out of here in 2-3 weeks, hoping everything goes to plan, but there is always a possibility things can go awry. im keeping positive and feeling good about everything, i just have to know what could happen.

So that is an update of treatment, as far as how im feeling, much better, besides the massive amounts of diarrea for the past week and a half. i know its gross but thats whats goin on. its alright because its really the only side effect i am still feeling from the chemo, i mean, its taking a lot out of me, but things could be worse. had a bout of nausea here and there, otherwise lookin good. one thing that sucks super bad is that my mom brought in a bunch of sealed, delicious snacks i got approved to eat, tuna packs, trix yogurt, kerns peach juice, bread, frozen marie callenders dinners, among other treats, but because of the loose bowels, they are putting me on bowel rest and feeding me nutrients through an iv. fluid only diet. sucks, but if it will make me better, im with it. still craving all sorts of food when i get out of here, but im not going to dwell on that.

taking a nap, probably going to have more nutty dreams. last night i was shopping in a costco sized bakery, i was eating all sorts of red velvet and buying big ass, like 4 ft sized tubs of ice cream. it was totally wild, except i was shopping in my hospital gown, and i knew a bunch of people that worked there. its like something from this hospital stay shows up every other dream in one way or another. I have really only had one grim nightmare-type dream. where i was at my own funeral, but i wasnt dead. i had a speech prepared for the thousands that showed up, but the minister wouldnt let me speak. that was a bust, but the giant ice cream store sort of made up for it. Another false wake up dream this morning, it was 1030 and my sister and mom were here, they woke me up because this little kid who was going through chemotherapy wanted to talk to me, and he was shaking my bed, just buggin me, anywho i started to talk to him, actually started speaking about my situation and thats why i woke up, cuz i was talking, and it was only 8 o clock. crazy. need to get off these crazy drugs. its startin to bother mer, feel like i got no rest.

this is a long post but ive got a lot to say, so deal with it. All of the visitors i have had have made my stay much more enjoyable, and pass the time very well. To everyone who has visited, and those who i have turned away on account of feeling bad, You guys are great and it really means a lot. all of the friends, thanks for the snacks and slurpees and such and arts and crafts, my room is decorated better than anyone elses, to the parents/ sister, thank you for being there every step of the way, i couldnt do any of this without you, and sorry you couldnt come in dad/sister but its in my best interest on account of illness, i love you guys, to Hope, i know how rough it is without big papa back home, but youre doing great, i love you and i will be home before you know it, and i also appreciate everything you have done back home to support the situation, To Tim and Kathy and Joan, and all your chitlens, i appreciate everything you guys have done for me, i completely blame joan for getting treatment, if she didnt tell me to get a blood test, i wouldnt be here and i couldnt be more thankful. Im so glad i met you guys this past year, you have become a second family to me. i love you guys. all of the donations and support from everybody has helped me out more than you know. Im going to get a marrow donor drive set up in the next month and i would love everyone to participate, you wouldnt believe how easy it is to save somebodys life. more news coming soon. i love everyone. over n out.