The Adventures of Bubble Boy (day 3-4)

Just laying here today. Last two days of treatment haven't gone too bad. I am getting enough medication to keep the nausea and sickness away. I can definitely feel the fatigue coming on though. Sort of just piles up day by day. I am currently getting two types of chemo twice a day. This is the third day with the 6th treatment tonight. Two more tomorrow and then another larger dose chemo that's completely new again on sunday. Then the transplant. I can't believe the response so far from everyone concerned. Certainly gives me hope to do something for everyone when this is done. Sorry I don't have much to say, very tired, thanks for the thoughts and prayers. A little something i wrote yesterday

patience is a virtue which i learned then threw away
there’s calmness and composure which left the first frantic phone call i got
diligence and endurance which lasted til my strength finally left me
forbearance is what i was born with but even it won’t keep me moving forever
heart and perseverance is what people say of me
but even they can’t get inside this head
resignation is the road i am now headed on and serenity is what i seek
tolerance is another i have come to know fully
yielding is what i have left.
But to yield is to stop for me. At least it would seem to be too much.
yield can be succumbing, suffering, handing over to defeat
but it can also be admitting, relinquishing, or submitting what little i have left
i control nothing

I know not where to look for wisdom
Job 28:23-28
23 God understands the way to it 
       and he alone knows where it dwells,
 24 for he views the ends of the earth 
       and sees everything under the heavens.
 25 When he established the force of the wind 
       and measured out the waters,
 26 when he made a decree for the rain 
       and a path for the thunderstorm,
 27 then he looked at wisdom and appraised it; 
       he confirmed it and tested it.
 28 And he said to man, 
       'The fear of the Lord—that is wisdom, 
       and to shun evil is understanding.

covenenants aren’t meant to be broken but mine feels crushed
gladly i would sacrifice and walk through the blood
seems like i have but still ahead more

The Adventures of Bubble Boy (day 1-2)

It's my second day locked away. Really my first full day with last night being my first night in. Had my first dose of chemo yesterday. I will be receiving chemo everyday for the first 6 days and then get my stem cells transplanted on the night of the 6 or 7th day. (for those with a weak stomach you may not want to read all of this, i will continue again after the next parenthesis) Yesterday's was supposed to be some of the worst. It was definitely not any fun. Made my head feel like i was having a power drill put through my temples, all while smelling it happen, and sucking on an aluminum can. Fortunately they gave me enough stuff not to puke, and to cover the pain they just kept shooting me up with morphine. Morphine is very interesting. It certainly works but it makes me feel very slow. I could think but could not say what was on the tip of my tongue. It doesn't last long though so by the time the chemo was done the drugs were gone. (You can start reading again) Second day I have had one dose already. This is another lower dose chemo which i get again this afternoon and on and off for the next five days. Not bad so far, i am sure it will all start to pile up and make me sleepy but for now I am somewhat coherent. The plan for now for those who haven't heard; i will have this transplant followed by radiation. Then we will look for a donor to do another stem cell transplant but with those stem cells and not my own, which is a stronger transplant but a riskier operation. Then we will probably follow that up by going to MD Anderson Cancer Center in Houston or another specialty cancer clinic to look at some diet and other new cutting edge treatments for cases like mine which have shown tough to beat. I wanted to say a quick thanks to everyone who is praying and offering help to us. There is to many to list so I am sorry i can't say thanks to everyone individually. I did want to say thanks to a couple people and inform people of some amazing things going on. My friends nathan and andrew have been heading up getting a trust setup for me to help with the medical bills and the cost of going to some of these specialty centers which are quite costly. They have set up a trust at Wells Fargo called "the stephen shirley medical fund" you will need to know Rosemary Shirley is the account holder if you wish to give. This is amazing. I can't ever say enough thank you's or even make up for the concern and giving people have poured out. It's amazes me the outpouring of even complete strangers to give and pray for someone hundreds and even thousands of miles away. I don't know how i will ever repay any of you. I only hope that when i do go into remission I can hopefully go onto something big enough and worthwhile enough with my life to confirm the faith everyone has put in God and my life. Thank you a million times over, I will continue to update when i am feeling awake and not too disconnected to write. See ya

Music Makes the world go round

So i had a chance to play worship again before more chemo. I can't explain how excited i get leading people to worship. It's just this amazing feeling to know that people can come to God and worship and i have something to do with that. I'm not sure what's ahead but i just wanted to thank all the people at lakeside who have been praying and thinking about us. It's great that Rosemary and I have been able to find a church that we not only love but have been so welcomed into. So a little update on the chemo schedule. It's sounding like thursday i will go back into the hospital for another 3 to 4 day stay again. Same as last time, chemo for 3 days. The way my blogging went last time i am thinking i should probably stay away from trying to write while heavily medicated. Although it sounds like some people were at least amused by my ramblings. So after that another 3 weeks off like this last time and then we go to the Davis facility to start the stem cell transplant, or bubble time as i am calling it. Got some new books to read though over the next few weeks. Vintage Jesus by Mark Driscoll, then a couple of older books i have always wanted to read. "The Idiot" by Dostoevsky and a complete works by C.S. Lewis. I hoping maybe i can be inspired a bit in some of my lyric writing by some of these works. So that's it for now, thanks for all the prayers, thoughts, support, food everything you all have been doing for Rosemary and I. It's made us realize how amazing our family and friends are. See ya

Above the fog

So a few days removed from the hospital i think i'm sane enough to post again. Apparently i Blogged while in the hospital which i don't remember. I also had mutiple conversations with people face to face and by text that I dont remember. I can say though that i wasn't sick and actually remember being pretty comfortable while in the hospital. I guess that means the nurses did their job, although apparently the drugs worked a little too good. Anyway I am finally coming out of the fog and feeling sane again, so I decided to give a little update. I'm back at home and resting. Just trying to prepare for the next dose. Shots everyday and blood draws evey other day for the next 2 weeks until the next chemo. Overall though i am feelig much better than excpected so i am thankful i was feeling strong before starting all this again. I am starting to work on some music again. Hopefully I'll have some stuff up in the next few weeks even if only ideas for people to give me feedback on. Well that's it for now hope all is well in your worlds, thanks for reading, see ya.

drug of choose

so after the 24 hour chemo I am actually not as bad as I would think. pretty nausious but being well controlled by the awesomes staff. once again the mercy nurses have awesome and quite attentive to our needs. that sure makes the whole stay easier. so one more day here than out for a few weeks then right back in here. somewhat quiet this trip compared to my stay in san juan which is a relief. only the every 4 hr rounds check-up. I have a feeling this is going to be nothing compared to the davis stay which is like almost 2 months straight. anyway interested in passing along aim,skype, or other ichat ways of keeping me sane by seeing people in my bubble would be apprepiated. God bless

I'm Here

So a day after having surgery I am laying in bed preparing for my 3 days of chemo hell. My first treatment starts in about a half hour. Today's shouldn't be to bad, at least considering everything else I have gone through. Then tomorrow I get the 24 hous straight which should be the worst part, then one more half treatment saturday. So that's what's ahead. I'll try to blog each day if I can for anyone interested. That's it for now, thanks for all the prayers and thoughts, see ya.

I'm so sick of getting stabbed

So a little update. The doctors have decided to try something a little different. We are not sure all the details yet, but after having had my bone marrow taken out the other day, its been decided that a stem cell/chemo regiment is actually the next best course of action. I will still also be doing radiation at some point but they want to make sure there is no more cancer spread throughout my body before doing very localized radiation. We still don't know all the details of how this will take place but we know it will, at the very least, mean spending 3 days in the hospital and having my own stem cells taken out and then given back after receiving another type of high dose chemotherapy. 3 days is looking like the minimum but a few weeks is more likely. Unfortunately it seemed like we were done but the area thats left seems to be quite resistent. I am very fortunate to have a great doctor, Robert Quadro, who is not only fighting to make sure I get into this new stem cell program but also making sure i am a prioirty and that what we do now will help me live not just a few years but as long as any normal person. I am still very frustrated but at peace with the path before us. I just want to be normal but i guess that will never really be possible again. I guess in a way though i hope i can use this to help others through painful situations they may face, i mean cancer is a pretty tough one and if i have the strength to beat this, i should be able to stand against anything. I hope too i can help get the word known about this horrible disease. If you have time check out the link "I'm too young for this" that i have on the page under links. Its an advocacy group for young cancer patients. They have a stat on there that cancer has doubled in younger age groups since 1970. It makes you wonder if sitting at my computer and typing this is just giving me more deadly radiation, who knows. Anyway people need to know that young people's lives are changed everyday by cancer directly too, and something needs to be done. At least young people and doctors who are treating them should know that it is possible for people my age to be sick. I would hate to see more people go through the struggle i did in finding a doctor to believe me only to get sicker because it took so long. It seems to be a trend among the age group though. Time to get off the soupbox now and get to fighting. I've been able to play 3 baseball games so far and at least 2 more this weekend, before my next treatment begins. I am thankful for that. It helps me have a goal to work for when i able to accomplish even teh simple things like working out, playing sports, working, and leading worship again. That's all for now thanks for following along God bless.

Envelope Please

So the unfortunate update. It appears that the mass where all the cancer started is still not gone. In fact it's actually gotten worse than the last scan back in December in that area. So bring on the radiation. Thats apparently the next step in the process. I will be having a bore marrow test sometime soon to decide how much and at what frequency the radiation will be given. I think at this point I'm still very numb to the whole thing. I know its my only choice but in a way i just wish i could stop and give up. I know i believe in God, but i have no clue where He is, or whats happening. It's very frustrating, thats about all i can say. I want to shake my fist to the heavens and scream and yell but i have no idea what good it will do. I know years from now my testimony will change lives to see the faithfulness of God and how he's taking me from a low to a place of influence or at least a voice that can move, but at the moment i feel like Christ in the garden of Gethsemane, not that i think I'm Christ or anything close. I just feel alone and desperate asking to take away what I know can be used for good in the end, because i don't want to deal with it. It's funny but the one way i know God is still here is in Rosemary. She's as frustrated and mad at God as ever i am sure but, i know God brought her to me for a reason, especially now. There will be no way to pay the debt i owe her for the sorrow and lose that she has already had to suffer, but i just pray she is rewarded 100 fold for what has taken place to this point. Thats all for now, i'm sure i'll be on here more in the next coming weeks.

The Waiting Game

Now begins the next wait and see. I had my latest PET scan this week, Its essentially a big tube sort of like a CT scan that looks for cancer cells in my body using sugar. Anyway i had the scan yesterday the 27th and am now waiting to hear what the next step is. Hopefully it will come back clear and then i will officially be in remission, if there is still something left then we have to consider radiation and all that garbage, we're obviously hoping for an all clear. It will so awesome to know i don't have this weight of more treatment hanging over me. So i'm trying to distract myself, gearing up for another baseball season with the Rockhounds. Our opening day is this weekend and i can't wait to get back out onto the field again after only getting to play 5 games last year before getting too sick. I'm still a bit frustrated that my body is not responding physically the way i know it should but hey if i can somehow pull off even hitting close to .300 this year, post chemo, i think i'll be happy. I'll try to post some pictures as soon as the season gets underway. Thanks for reading, sorry for the delay in posts. see ya

Check this out - Lymphoma Cure a thon
thanks to my cousin for sending me this link

Thanks

Some awesome guys from Dixon Family Christian Center made a youtube video tribute to me while i was sick. They covered my song Breathing In with a little metal twist, anyway i just wanted to say thanks and send everyone over to their youtube account were you can hear a couple of their own songs or at least some ideas they seem to be working on. Thanks guys.

It All Starts or Ends here

After spending the last year laying on a couch and wondering if i was going to die, i had a lot of time to think about things, I wish i had started this then but I wasnt sure what was going to happen or if i would have the energy to keep up with it. So better late than never right, still theres some things i would only be able to describe while in that moment. For those who dont know i just finished my first battle with Hodgkin's Disease. I say first because though I'm told it's all over, no one can really say whats going to happen. I thought i was only going to have half the amount of chemo i did. i remember being so disappointed when it nearly doubled. I also say first because as much confidence as i now have in my doctors i had been let down so badly by mis-diagnosis and delays in the past 2 years that i just don't know what will happen in the future. But for the time being i have to keep looking foward. So I'm working again, Attempting to play baseball and most importantly playing music again. I think I'm most excited about leading worship again. I have an opportunity to work with Lakeside Church and Brian Chandler playing guitar and leading some songs for the weekend services. I'm so excited to just play and worship again, especially with someone like Brain who seems to have as much passion as i do for worship. So that what this blog is going to be about, me and trying to get back to some sort of semblance of real life. Maybe a place to vent or share thoughts, songs, poetry, all that good stuff. God bless