life as of late...
I don't do a very good job of keeping people updated on my life, so here is an attempt.
If you didn't know, this summer I was feeling pretty good, and my cancer was at a level where it was manageable, and so i made plans to return to springfield, MO, find a place to live, and go to school. I worked all of that out and ended up leaving in august for good ol' missouri. i was living with hector and joey in joey's house while his parents itinerated on the east coast for their missionary endeavor in croatia. things seemed to be working out. i even got a job working with joey at the argentina steakhouse waiting tables, and really just enjoying myself. but as i've gotten used to lately, my plans never seem to go the way i planned. i returned to maryland for my next treatment only to find that my platelets were too low and that they would have to drop me from the protocol i was on. fortunately the national institutes of health are always looking for new ways to treat cancer and i was on a new protocol right away. unfortunately the protocol didnt work, and when i returned to springfield my cancer grew back to a level where i was getting sick all the time. so i come back to maryland to start chemotherapies now, and we begin discussing my need for an alogenic stem cell transplant (that means i get the cells from a donor, and not myself). so they try a chemo called EPOCH on me, and that ends up not working, plus i get some sort of bacteria or something and end up in the hospital in springfield for week with fevers of about 102-105 degrees farenheit. this is all happening around halloween time, and i remember because we were going to throw a party, and i wasn't going to be able to be there. So early november i go back to maryland where they do another round of epoch, which doesn't work. but my counts come up just enough to be healthy enough to go see my family for thanksgiving which was really nice. when i return they start me on a new chemotherapy (MOP - it's actually one of the first chemo's developed for hodgkin's) and it works! my disease is down, and i feel pretty good. they let me go home the saturday before christmas and stay til new years day, which is pretty awesome, and i get to see lots of friends, and visit lots of places that make me love stroudsburg. but when i get back to maryland my platelet counts are now down to dangerously low levels ( to put it in perspective, regular platelet counts are 150-300, and mine were at 6). so they can't do this treatment anymore, and they try just one of the drugs in the treatment to see if that will work. aaaand, it doesn't, and i start getting sick again, and they aren't really sure what to do. so now for the past few weeks i've been taking chemotherapy in a pill form basically. its these two drugs that they are doing studies with at the mayo clinic to see if it works in hodgkins patients, and i have to say, it's working well enough for me that i feel pretty good. i have low grade fevers at night sometime, and a bit of a night sweat, but besides that i feel good. oh, and lately i have been having excruciating leg pain, but they gave me some percocet for that, and i'm hoping that will help with the problem. so as of now, i've been stuck here in maryland since november (which really isn't too bad a place to be) and i'm hoping that my platelet counts will come up, and not keep dropping (i get platelet transfusions every few days) because once they are stable i should be able to go home which is good. i'll probably fly out to missouri and start getting all my stuff out there packed up to bring back home. so all in all things have been a roller coaster lately but i'm enjoying life. i've recently picked up an obsession with camping/hiking even though i can't do either of them right now. i spend most of my time on websites about hiking, and looking at hiking gear and stuff. i think its pretty cool, and i love being outside. can't wait til it starts to warm up. also, they have lots of things to do down here for patients staying at 'the children's inn at NIH' which is where i am (you can stay here til your 25...). I've gone to a redskins game, three washington capitals games, out for pizza a few times, to the cheesecake factory to eat, up to look at lights at the mormon temple, to a presbyterian church for carols and readings... they are just really nice here, and if i was a little kid there would be like 2000 more things for me to do. also, my family come down to visit whenever they can which makes things better. just spending time with them, or going to church or out to eat makes life a little more busy for me which is good. soooo that's life for me right now i guess. i miss all of you out there who i never get to see. i really do.
If you didn't know, this summer I was feeling pretty good, and my cancer was at a level where it was manageable, and so i made plans to return to springfield, MO, find a place to live, and go to school. I worked all of that out and ended up leaving in august for good ol' missouri. i was living with hector and joey in joey's house while his parents itinerated on the east coast for their missionary endeavor in croatia. things seemed to be working out. i even got a job working with joey at the argentina steakhouse waiting tables, and really just enjoying myself. but as i've gotten used to lately, my plans never seem to go the way i planned. i returned to maryland for my next treatment only to find that my platelets were too low and that they would have to drop me from the protocol i was on. fortunately the national institutes of health are always looking for new ways to treat cancer and i was on a new protocol right away. unfortunately the protocol didnt work, and when i returned to springfield my cancer grew back to a level where i was getting sick all the time. so i come back to maryland to start chemotherapies now, and we begin discussing my need for an alogenic stem cell transplant (that means i get the cells from a donor, and not myself). so they try a chemo called EPOCH on me, and that ends up not working, plus i get some sort of bacteria or something and end up in the hospital in springfield for week with fevers of about 102-105 degrees farenheit. this is all happening around halloween time, and i remember because we were going to throw a party, and i wasn't going to be able to be there. So early november i go back to maryland where they do another round of epoch, which doesn't work. but my counts come up just enough to be healthy enough to go see my family for thanksgiving which was really nice. when i return they start me on a new chemotherapy (MOP - it's actually one of the first chemo's developed for hodgkin's) and it works! my disease is down, and i feel pretty good. they let me go home the saturday before christmas and stay til new years day, which is pretty awesome, and i get to see lots of friends, and visit lots of places that make me love stroudsburg. but when i get back to maryland my platelet counts are now down to dangerously low levels ( to put it in perspective, regular platelet counts are 150-300, and mine were at 6). so they can't do this treatment anymore, and they try just one of the drugs in the treatment to see if that will work. aaaand, it doesn't, and i start getting sick again, and they aren't really sure what to do. so now for the past few weeks i've been taking chemotherapy in a pill form basically. its these two drugs that they are doing studies with at the mayo clinic to see if it works in hodgkins patients, and i have to say, it's working well enough for me that i feel pretty good. i have low grade fevers at night sometime, and a bit of a night sweat, but besides that i feel good. oh, and lately i have been having excruciating leg pain, but they gave me some percocet for that, and i'm hoping that will help with the problem. so as of now, i've been stuck here in maryland since november (which really isn't too bad a place to be) and i'm hoping that my platelet counts will come up, and not keep dropping (i get platelet transfusions every few days) because once they are stable i should be able to go home which is good. i'll probably fly out to missouri and start getting all my stuff out there packed up to bring back home. so all in all things have been a roller coaster lately but i'm enjoying life. i've recently picked up an obsession with camping/hiking even though i can't do either of them right now. i spend most of my time on websites about hiking, and looking at hiking gear and stuff. i think its pretty cool, and i love being outside. can't wait til it starts to warm up. also, they have lots of things to do down here for patients staying at 'the children's inn at NIH' which is where i am (you can stay here til your 25...). I've gone to a redskins game, three washington capitals games, out for pizza a few times, to the cheesecake factory to eat, up to look at lights at the mormon temple, to a presbyterian church for carols and readings... they are just really nice here, and if i was a little kid there would be like 2000 more things for me to do. also, my family come down to visit whenever they can which makes things better. just spending time with them, or going to church or out to eat makes life a little more busy for me which is good. soooo that's life for me right now i guess. i miss all of you out there who i never get to see. i really do.