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.
Wednesday, April 28, 2010
Monday, April 26, 2010
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.
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.
Thursday, April 22, 2010
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...
Monday, April 19, 2010
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.
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.
Wednesday, April 14, 2010
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.
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.
Tuesday, April 13, 2010
Dream on
The coolest and most awesome thing i have noticed since my stay here is my dreams. I have had the most lucid, vivid, wacky dreams that i remember in full detail. I dont think ive ever experienced dreams like this before. Last night i woke up 3 times, and every time i went back to sleep i was in another wacky scenario. i wake up tasting things, or remembering the feel of something i was touching during the dream. for example, last night, I was hangin with Larry David in an office building that we worked at, trying to find the person who ditched 58 cents on the ground, change from his coffee. i could go into more detail, it was a long one, but anywho he didnt ditch it, his pockets were too big and it fell out. understandable.
I want to start writing down all of my dreams, cause i guess i usually never remember them, and the fact that they are so real, i feel like i should take note of this. I had a couple of false wake-up dreams this morning as well. like 3 in a row in 10 minutes.
I also had a dream about this pizza party, this totally rad pizza party and all of my friends were there. this dude owned a super rad house, it was like the discovery zone, or the jungle, but futuristic, decontamination rooms and big sliding glass bubble doors, friends running around with squirt guns and just havin a ball. i dont know who the dude was but he was super rich and kept buying pizza for everyone.
there were other less significant dreams that went on, not quite worth mentioning, just the detail i remember is wild.
I want to start writing down all of my dreams, cause i guess i usually never remember them, and the fact that they are so real, i feel like i should take note of this. I had a couple of false wake-up dreams this morning as well. like 3 in a row in 10 minutes.
I also had a dream about this pizza party, this totally rad pizza party and all of my friends were there. this dude owned a super rad house, it was like the discovery zone, or the jungle, but futuristic, decontamination rooms and big sliding glass bubble doors, friends running around with squirt guns and just havin a ball. i dont know who the dude was but he was super rich and kept buying pizza for everyone.
there were other less significant dreams that went on, not quite worth mentioning, just the detail i remember is wild.
Monday, April 12, 2010
when it rains it pours
one week of chemo, one week of rest. then a bone marrow biopsy to see how the leukemia reacted to the treatment. everybodys bets were riding on remission. everybody lost. i had planned to find out that i was in remission, meaning there was less than 5% mutated cells in the sample, and that my blood count would go back up, and i would be out of here in 10 days, home, waiting for the bone marrow transplant next month. rather, the leukemia did not respond to the treatment as well as hoped, and i got a couple more weeks-months to be here and deal with this. They want me to rest for the next 5 days or so, get better from this first blast of chemotherapy, and then start a different, higher dosage chemo this weekend for who knows how long, then rest and test again. This was the worst news i could have recieved, based on all of the doctors previous predicitons.
There are many different plans for treatment now, and we are sort of playing it by ear. it all depends on how i respond to this next batch of chemotherapy, and how soon we can find a match for the marrow transplant. i could be in here for another 3 weeks or another 2 months. i am still praying that my sister is a match, she is getting tested tomorrow morning, though we wont know for a couple of weeks, which is also when we will know how the leukemia responded to this 2nd batch of chemo. an ideal situation would be that in 2 weeks i am in remission and that my sister is a match and we could jump straight into the transplant. sure it would be the longest hospital stay (approx 2 months) but we would be on the ball and get it done.
I am trying to keep positive and keep my head up about the situation, but i also have to think about the other possibilities, because they are just that, possible. im worried that the leukemia wont go into remission, that it is too aggressive, im worried that my sister wont be a match and i will have to repeat chemotherapy 86439087630873608653 times, i guess im just worried about waiting. i know that they have a plan of attack, and there really is no option of just giving up. its just my life is in their hands and i have no control. it is scary to think about, and i know i have to stay positive, for the most part i am. Just didnt expect set backs this early.
So im about 17 days deep into this hospital stay. Besides all of the terrible news earlier, my biggest concern of makin it through here is the food. God awful. i cant eat any outside food that isnt factory sealed. no taco bell, no panda, no filet mignon, no pizza. ive been having dreams about food. like really lucid, tasty dreams. I mean, ive got mom goin shoppin for me tomorrow and shes bringing in some goods that will make it better, definetly looking forward to it. ive been craving a tuna samich for the past couple days. just mayo tuna on wheat bread. nothing sounds better right now. im hoping to go out to dinner everyday for a month when i bust out of this joint. enough about food though, just makin my mouth water.
There are many different plans for treatment now, and we are sort of playing it by ear. it all depends on how i respond to this next batch of chemotherapy, and how soon we can find a match for the marrow transplant. i could be in here for another 3 weeks or another 2 months. i am still praying that my sister is a match, she is getting tested tomorrow morning, though we wont know for a couple of weeks, which is also when we will know how the leukemia responded to this 2nd batch of chemo. an ideal situation would be that in 2 weeks i am in remission and that my sister is a match and we could jump straight into the transplant. sure it would be the longest hospital stay (approx 2 months) but we would be on the ball and get it done.
I am trying to keep positive and keep my head up about the situation, but i also have to think about the other possibilities, because they are just that, possible. im worried that the leukemia wont go into remission, that it is too aggressive, im worried that my sister wont be a match and i will have to repeat chemotherapy 86439087630873608653 times, i guess im just worried about waiting. i know that they have a plan of attack, and there really is no option of just giving up. its just my life is in their hands and i have no control. it is scary to think about, and i know i have to stay positive, for the most part i am. Just didnt expect set backs this early.
So im about 17 days deep into this hospital stay. Besides all of the terrible news earlier, my biggest concern of makin it through here is the food. God awful. i cant eat any outside food that isnt factory sealed. no taco bell, no panda, no filet mignon, no pizza. ive been having dreams about food. like really lucid, tasty dreams. I mean, ive got mom goin shoppin for me tomorrow and shes bringing in some goods that will make it better, definetly looking forward to it. ive been craving a tuna samich for the past couple days. just mayo tuna on wheat bread. nothing sounds better right now. im hoping to go out to dinner everyday for a month when i bust out of this joint. enough about food though, just makin my mouth water.
Friday, April 9, 2010
Friends
Today I met a kid named Brandon, one year older than me who is going through exactly what I am, only some months ahead. He is 2 months out of the transplant and says he feels like a normal guy again, minus all his taste isnt back yet, mostly just tastes sweet and sour things. Anywho, it was very relieving to know how he is doing going through this as well. He seemed pretty upbeat about his plight, which in turn made me a little more upbeat. I know there isn't any other way of fixing me other than this transplant, so its like i have to roll with it and hope for the best. It is very scary to think about the side effects, the GvH, but Brandon has not shown a single sign yet. I mean, it can really show up anytime after, and too much exposure to the sun can trigger the GvH. which means I am going to have to be super conscious about being out during the sun, as in covering up and using sunscreen, shouldn't be too hard, maybe I'll just go nocturnal. Either way, I am ready to get this transplant going and hope and pray every day that my sister is a match... which leads me to my next point..
I would like to set up something this next month when i am home, maybe down at panama red. A team from the National Marrow Donor Program could come down and we could have a mass amount of people join the registry. You wouldnt believe how easy it is to save somebodys life. Its just a cotton swab in the cheek, and maybe a blood test, but anywho, I am going to talk to folks from Pickles, see if my boy timbo and kathy could set us up with some food and refreshments, get some bands goin, and have a day of people signing up to donate. It would mean so much to me, and I would appreciate anything anybody could do to help with this.
In other news, we got the results back from the spinal tap i got the other day. I guess with the type of leukemia i have (AML), mutated cells normally don't show up in the spinal fluid or brain, but they had to check anyway to be safe. and yesterday the doctor came in and said she found some white cells in the fluid, but wouldnt know if they were leukemia cells or not until today, and i thought that was total bullshit. it's like just leaving me hanging for a whole day, thinking maybe it could be there, so today was good when i found out that it was indeed, negative. some doctors need better bedside manners. I mean, everybody has been super nice, all the nurses and doctors, and they arnt sugar-coating anything which is good, but don't leave me hangin like that. that couldve meant more chemo with a port put in my head among other inconveniences. so the plan of attack stays the same as of now.
The main thing on my mind now is food. all this bologna is getting unbearable. ive got 2 more weeks and i dont know how much of this food i can eat. my parents and girlfriend were kind enough to bring me some hungry man and marie callenders frozen dinners which is a world of difference.... but i can't stop thinking about pizza, steak, and alehouse burgers. In the next month i am home, i hope to plan the pizza party to end all pizza parties and everyone i have ever known is invited. if i dont call you, and you drive by a loaded round table parking lot, pull in, we will be there enjoying the heck out of some delicious pizza. although we will have to use somebody elses name/phone number for the order, as I believe i have been blacklisted from round table, among other pizza places in Livermore for my inconvenient experiences and ability to complain about those experiences. its like, i love the pizza, they can just never get it right, i feel like i gotta go there and make it myself.
Anyway, I want to thank everybody again for all the support and donations during all of this. It means so much and is helping me out more than you know. And the more visitors the better, i have been feeling better today, and expect to feel better every day, lookin like 2 weeks til im out, but would love to see anybody within those 2 weeks, under one condition, you must bring a slurpee upon arrival. coke on bottom, cherry on top. if you cant do it, i wont hold it against you, but just know that the slurpee is clutch. again, I love everybody. check check annnd check. over.
I would like to set up something this next month when i am home, maybe down at panama red. A team from the National Marrow Donor Program could come down and we could have a mass amount of people join the registry. You wouldnt believe how easy it is to save somebodys life. Its just a cotton swab in the cheek, and maybe a blood test, but anywho, I am going to talk to folks from Pickles, see if my boy timbo and kathy could set us up with some food and refreshments, get some bands goin, and have a day of people signing up to donate. It would mean so much to me, and I would appreciate anything anybody could do to help with this.
In other news, we got the results back from the spinal tap i got the other day. I guess with the type of leukemia i have (AML), mutated cells normally don't show up in the spinal fluid or brain, but they had to check anyway to be safe. and yesterday the doctor came in and said she found some white cells in the fluid, but wouldnt know if they were leukemia cells or not until today, and i thought that was total bullshit. it's like just leaving me hanging for a whole day, thinking maybe it could be there, so today was good when i found out that it was indeed, negative. some doctors need better bedside manners. I mean, everybody has been super nice, all the nurses and doctors, and they arnt sugar-coating anything which is good, but don't leave me hangin like that. that couldve meant more chemo with a port put in my head among other inconveniences. so the plan of attack stays the same as of now.
The main thing on my mind now is food. all this bologna is getting unbearable. ive got 2 more weeks and i dont know how much of this food i can eat. my parents and girlfriend were kind enough to bring me some hungry man and marie callenders frozen dinners which is a world of difference.... but i can't stop thinking about pizza, steak, and alehouse burgers. In the next month i am home, i hope to plan the pizza party to end all pizza parties and everyone i have ever known is invited. if i dont call you, and you drive by a loaded round table parking lot, pull in, we will be there enjoying the heck out of some delicious pizza. although we will have to use somebody elses name/phone number for the order, as I believe i have been blacklisted from round table, among other pizza places in Livermore for my inconvenient experiences and ability to complain about those experiences. its like, i love the pizza, they can just never get it right, i feel like i gotta go there and make it myself.
Anyway, I want to thank everybody again for all the support and donations during all of this. It means so much and is helping me out more than you know. And the more visitors the better, i have been feeling better today, and expect to feel better every day, lookin like 2 weeks til im out, but would love to see anybody within those 2 weeks, under one condition, you must bring a slurpee upon arrival. coke on bottom, cherry on top. if you cant do it, i wont hold it against you, but just know that the slurpee is clutch. again, I love everybody. check check annnd check. over.
Thursday, April 8, 2010
Chemotherapy
So a couple of days after i got in here, they had to do a bone marrow biopsy to see what type/ how aggressive the Leukemia is. they numbed me up and screwed a needle through my bone and slurped out some bone marrow. Sounds rough, but it was that bad. I have AML, as opposed to ALL, i could go into the differences, but there arnt that many for you to worry about. anywho, they found that I have a complex mutaion, which means its high risk because more than 3 chromosomes are mutated, which means we have a plan of attack for treatment. I just finished a week of chemotherapy, which is not at all what i had expected. It's just a super high dose medicine recieved through an IV, along with some pills. The after math has been rough, as this medicine is just sort of killing all the white blood cells in me. basically like a controlled poison. Im going to stay here for the rest of the month, as my blood counts go back up, i will be able to leave near the end of april, and hopefully I will be in recession.
Once home, I kind of have to stay under house arrest, as my body will still be super fragile and susceptible to infections. then after a month, the plan is to have a bone marrow transplant. It's really the only way to fix the type of leukemia I have, and there are many risks that go into this procedure, which is really the scariest part. The best case scenario is that my sister is a match. there is a 25% chance that she is, and if so, after the month of being home i would come back for more chemo for a couple days, then jump right into the bone marrow transplant, which is also done differently than I has presumed. Apparantly they would take blood from an artery in my sister (or donor)'s neck, skim it for stem cells, then feed the stem cells into me with blood through an IV. and give her the blood back. and then the stem cells find their way to the mutated genes in my bone marrow and change them. Like scrubbing bubbles, they do the work so you don't have to. Its pretty wild to think about. once the stem cells alter my bone marrow, I will have a brand new immune system. they will need to keep me here for a month, then once released, i need to check in with the hospital 2 times a week, and can never be left alone for the next 4 or 5 months on account of the risky side effect Graft vs Host disease.
Graft vs Host disease is basically where the new immune system kills all the leukemia cells, but is so strong it could cause inflammation to my organs, and thats what they need to monitor during my visits after. Suposedly it is good to show minor signs of GvH to ensure that the transplant killed off all the leukemia. who knows how my body will react to the new immune system, it just depends on how well it matches. it sucks, and its a bummer having to wait, but it's the only thing they can do. I've got youth on my side, but even still it just depends on the match.
and there comes another issue, If my sister is not a match, they said it could take anywhere from 2 months to a year to find a match in the bone marrow registry, they have no idea until they type me, it all depends on heriatge and race. so I'm praying that my sister is a match and we can jump right into this, otherwise I'm going to have to be coming back every other month for more chemo to keep the Leukemia at bay until we find a compatible donor. If anybody wants to enter the registry program they should contact the NMDP (national marrow donor program) or head to a local hospital and they can type you. I dont know how hard it will be, but the more the marrier and I would appreciate it more than anything.
Thats sort of an update as of now, should be bringing it day by day after this, but to everyone who wants to know whats going on, thats whats goin on. The support from everyone has been phenominal and i cant wait to break outta this joint. visits are always welcome, unless im feeling like hell, just give me a call. i love everyone.
Once home, I kind of have to stay under house arrest, as my body will still be super fragile and susceptible to infections. then after a month, the plan is to have a bone marrow transplant. It's really the only way to fix the type of leukemia I have, and there are many risks that go into this procedure, which is really the scariest part. The best case scenario is that my sister is a match. there is a 25% chance that she is, and if so, after the month of being home i would come back for more chemo for a couple days, then jump right into the bone marrow transplant, which is also done differently than I has presumed. Apparantly they would take blood from an artery in my sister (or donor)'s neck, skim it for stem cells, then feed the stem cells into me with blood through an IV. and give her the blood back. and then the stem cells find their way to the mutated genes in my bone marrow and change them. Like scrubbing bubbles, they do the work so you don't have to. Its pretty wild to think about. once the stem cells alter my bone marrow, I will have a brand new immune system. they will need to keep me here for a month, then once released, i need to check in with the hospital 2 times a week, and can never be left alone for the next 4 or 5 months on account of the risky side effect Graft vs Host disease.
Graft vs Host disease is basically where the new immune system kills all the leukemia cells, but is so strong it could cause inflammation to my organs, and thats what they need to monitor during my visits after. Suposedly it is good to show minor signs of GvH to ensure that the transplant killed off all the leukemia. who knows how my body will react to the new immune system, it just depends on how well it matches. it sucks, and its a bummer having to wait, but it's the only thing they can do. I've got youth on my side, but even still it just depends on the match.
and there comes another issue, If my sister is not a match, they said it could take anywhere from 2 months to a year to find a match in the bone marrow registry, they have no idea until they type me, it all depends on heriatge and race. so I'm praying that my sister is a match and we can jump right into this, otherwise I'm going to have to be coming back every other month for more chemo to keep the Leukemia at bay until we find a compatible donor. If anybody wants to enter the registry program they should contact the NMDP (national marrow donor program) or head to a local hospital and they can type you. I dont know how hard it will be, but the more the marrier and I would appreciate it more than anything.
Thats sort of an update as of now, should be bringing it day by day after this, but to everyone who wants to know whats going on, thats whats goin on. The support from everyone has been phenominal and i cant wait to break outta this joint. visits are always welcome, unless im feeling like hell, just give me a call. i love everyone.
MARCH
"Hey man, are you feeling alright??"
"You don't look so good"
"Did you see brent last night, he looked yellow?!"
"Did you get enough sleep?"
I thought everyone was being a dick. Turns out everyone was right. For the month of March I had been more fatigued than normal, blamed it on working 55 hours a week. After all the comments, along with 2 staff infections, my bosses mom (grandma Joan) told me to get a blood test, just to see, maybe it was jaundice, or i was anemic. I couldn't be more thankful for taking that advice; the day after the blood test i got woken up by my doctor at 630am saying 'youre really really anemic and need to get to the emergency room right now!'. Scared the hell out of me, but i just though i would get some blood, stay overnight and be on my way. Well, my blood counts were so off they had an oncologist take a look, and after about 2 hours of being at the ER they told me I had Leukemia.
I would never have thought I would be in a hospital with Leukemia, cancer of the blood. My bone marrow isn't creating the right amount of white/red blood cells and has all sorts of other harmful cells jumbled in. It has been a lot to take in, but they transferred me to UCSF that day and i have been getting treatment since. That blood test turned my life upside down for this coming year, and it is a lot to handle. But ive got a lot of family/mega friends behind me and I want everyone to know how much I love them and appreciate everything everyone has done for me.
"You don't look so good"
"Did you see brent last night, he looked yellow?!"
"Did you get enough sleep?"
I thought everyone was being a dick. Turns out everyone was right. For the month of March I had been more fatigued than normal, blamed it on working 55 hours a week. After all the comments, along with 2 staff infections, my bosses mom (grandma Joan) told me to get a blood test, just to see, maybe it was jaundice, or i was anemic. I couldn't be more thankful for taking that advice; the day after the blood test i got woken up by my doctor at 630am saying 'youre really really anemic and need to get to the emergency room right now!'. Scared the hell out of me, but i just though i would get some blood, stay overnight and be on my way. Well, my blood counts were so off they had an oncologist take a look, and after about 2 hours of being at the ER they told me I had Leukemia.
I would never have thought I would be in a hospital with Leukemia, cancer of the blood. My bone marrow isn't creating the right amount of white/red blood cells and has all sorts of other harmful cells jumbled in. It has been a lot to take in, but they transferred me to UCSF that day and i have been getting treatment since. That blood test turned my life upside down for this coming year, and it is a lot to handle. But ive got a lot of family/mega friends behind me and I want everyone to know how much I love them and appreciate everything everyone has done for me.
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