Normal Life

So i’m starting to feel normal again for the first time in a long time. Sort of weird. I got in some part-time hours last week and I’m trying to get to as close to a full week in this week. It’s just odd. When you learn to live dreading the next test it’s kind of odd to think this could be over, at least for awhile. It’s still a great feeling though. Probably most excited to be able to work out and play some golf and not feel like sleeping all day. Amazing how the world passes you by when all you can think about is waking up to eat and going back to bed. Not that, that wasn’t important in the recovery it was just very frustrating to feel like i was getting better. But now everyday seems to be better and stronger. Although i am amazingly weak. I am attempted sit-ups tonight and failed miserably. Guess that’s gonna take some time. but I’m excited to throw myself back into life, even if it only ends up being for a year or two before we have to try something else. I obviously pray it’s not and believe after all this I have so much to share it’s time to get moving. Gonna get to lead worship in a few weeks which is always awesome. Even on weeks when i am dragging to get setup by the time people are singing and worshipping it’s worth every moment of the practices and setup. Hopefully the radiation shouldn’t keep me from getting back to singing too long. The side effects seem not wonderful but compared to the last 3 months i say bring it on. So here i am ready to jump off a cliff back into my so called life. I think the one thing i most want to hold onto and not forget is how much i long to do something amazing. Something that transforms or effects people. I have seen already the love and compassion from people that comes by first thinking of others and i can only hope that somehow my life will be worth such sacrifices. Not that i don’t long for normalcy again, but i am setting myself to be committed to changing people’s lives, whatever that influence is. If it’s sharing my story from my cubicle at work or traveling the world, i think God has a plan. I know He does. I just don’t want to get in the way of that. Keep praying for strength and my radiation which starts up in a week. I have some reservations but I do trust my Dr that this is the right thing to do at this point. Pray if it’s not that it’s obvious. God certainly has answered that prayer before. See ya

really important

haha got you. no actually some of the greatest news i have heard in awhile besides my remission. MEWITHOUTYOU has a new album coming out may 19th. Ok so i’m crazy but it’s the little things that sometimes are easiest to get excited about it. Most of you have no idea who they are and if you do you may hate them, but their lyrics have spoken to me probably the most of any other band and other people or things i’ve read over the last few years so give them a listen or at least read some lyrics. You’ll be excited too, hopefully. that is all.

Afraid to post

It seems like every time i do an update something changes. So i’ve been a bit slow in blogging this, but. I’M in REMISSION. At least that’s the consensus at this point. Houston unfortunately can’t continue with their type of treatment until I show proof of disease. Not that I am bummed to not have Cancer. The reality of it all is that relapse in my case is pretty high for the next year or two. So now we are back to radiation here in Sacramento. The chance of relapse after radiation becomes more like 3 to 5 years and in some cases never. So obviously that’s what we are praying for. It’s a little weird to be sort of done though. You think about it but now that i am at that point at least for awhile it’s somewhat overwhelming. I am going to be trying to go back to work and hopefully playing again sometime soon. The last couple days have been probably the best i have felt since at least thanksgiving. Really excited to work out and try to play golf with all this great weather. So that’s what is happening for now. I start radiation in a week and half. Not really worried about the side effects though compared to everything i have done so far. Almost seems like a cake walk compared to the stem cell when they talk about it. So we will see i guess. Houston was good and bad. Good news about remission but i am sure some of you heard i was put in the hospital for pneumonia and breathing problems. Seems to be clearing up so far, now i’m back to just dealing with side effects of the stem cell. Slow progress but at least finally some progress. Guess that’s it. Great news, just need it to stay that way. Thanks again for all the support and prayers to get us this far. Keep praying this is it and maybe a little radiation i will never have to be stabbed and subjected to toxic drugs again.

The anticipation is killing me

So now that this Houston thing is a go it’s driving me crazy just waiting. I feel very good about this treatment. All along its seemed almost too easy too get to Houston. What I mean is we had looked into some other treatments centers over the past year for a few trial type drugs but nothing ever materialized. Then the moment we read about going to Md Anderson both Rosemary and I felt excited about the possibility. It seemed like over night people were excited too and wanted to know how to help. To raise over $40,000, which is the new total already, in just 2 months seemed absurd. Not that I wasn’t excited by the talk of donations, I just had no idea people’s level of generosity. Now we are less than a week from beginning the initial testing and could be on treatment as soon as the week of the 20th. Just amazing. I know i blogged before about how God’s seems to work in my life. He gives me doors open to walk though and it’s my decision to peek inside. Other times he slams the door in my face leaving me questioning what’s next. But later it always makes sense. Music has been like that. Jobs have been like that. Leading worship has even been like that. When i left 1830 and the worship service i lead for quite awhile and had come to love, I didn’t understand some of the changes God was making. But leaving turned out to be only months before starting to get sick. Ultimately I would have had to leave. I don’t know why God allows the things to happen in my life this way but it makes it obvious and clear when a really important decision is at hand. Instead of planning everything out which never goes to plan, we are walking in faith that this is the place and treatment we have been waiting all along. Even if it took all this time to get there. I know the maturing i have had in the last 3 years could have never been learned another way. Thank you for being a part of that.

Houston here we come.

Posted by Stephen S at 3/30/2009

Plans are always changing

Over the past 2 years i have learned that while its ok to make plans i should never expect them to actually go perfectly to plan. As of today we have a plan for radiation and our first visit to Houston. I will be getting another pet scan this monday which has become a sort of dreaded place to go. If it’s good news we always have to temper that since every time its been followed by bad news. Then tuesday i will see Davis and be allowed to finally be in public again and they are taking out the last borg implant for now. Then thursday i will have my radiation walk-thru where they create a template for me to lay in while they shoot the radiation so they can be very accurate about where the radiation goes. Then the following wednesday while waiting for the radiation planning and all that to happen we will visit MD Anderson for an initial visit to get there opinion on what i should do next, or what type of therapy’s they offer that we can not receive here locally. Hopefully if all goes to plan i would start radiation the following week. My radiation is 25 times so it will be everyday for 5 weeks straight. The side effects for the first few weeks are supposed to be minimal but the last few i might have some almost sun burn type conditions on my skin and i might have sore throat and stuff since they will be shooting radiation in my throat where the Hodgkin’s has shown up multiple times. So that’s the plan but could change. I pray it doesn’t. This is the soonest everything could happen and I don’t need any more delays after all the delays i have had the past 2 years. I don’t want there to be any more time for the growth to accelerate again. still stuck here until after next tuesday. can’t wait to get back over to church to say hi and thanks for the support and maybe even try to play sometime during my radiation if i am not too beat up and you’ll have me. thanks again for all the continuing support and prayers. I am getting there, just slowly.

stuck here

So because my body is still so worn down and susceptible to getting sick, i basically can’t leave the house for at least a month past my transplant. If i do i have to wear a mask anytime i am indoors and i am supposed to stay away from any large group of people. Hopefully that will be over soon. We met with Davis already and my bloodwork looked great. That’s good news that i am recovering fast as always. They are planning on having me start radiation as soon as 2 weeks from now. Our hope is that we can do the radiation for a few weeks and then right around the time i am finally ready or able to start traveling or being around crowds then we can go to Houston to visit MD Anderson. We are very excited to see what different therapy’s MD Anderson can offer. One of the things they are doing is working to create a vaccine for each individual patient so the cancer does not come back. They are also working to create better ways for your own immune system to actually target the cancer. Rosemary read something that the average person fights cancer at least 3 times, i think was the number, during there lifetime. Most people’s immune systems are able to recognize and destroy the cancer. In my case my system was not able to. The hope is that in doing the transplant my system sort of was rebooted. Almost like pulling the plug on your computer when it’s just not running right. That’s why they had to take me to the brink of dying as far as my immune system goes and then brought everything back with new stem cells. But on top of the transplant we would like to further that by some of the treatments MD Anderson offers that no one else in the area is working on at this point. Still having some side effects from all the drugs. My entire body is still a bit shaky and especially my hands are numb. It’s been two weeks as of today since i have had the morphine so i hope soon that, that wears off and takes care of the problem. Also having weird pain in my feet. It could be walking more since being home and another thought was that all the nervous anxious tapping i have been doing coming off the morphine might have made my feet sore. It will be awhile until i am not bruising and getting tired or sore from just about everything i do. So there’s a couple things to keep praying about. Other than that Just trying to relax and rest so i get ready sooner to get moving. Can’t wait in two weeks to have the pic in my arm pulled out. Might be able to go swing a golf club finally again in a couple weeks. That would sure put a smile on my face. See ya

home at last

Directly from Stephen’s Blog: Silhouette of You

well i am finally home. I actually got home tuesday afternoon. still a lot of recovery to do. I am totally exhausted still and very weak. even opening a simple bottle or carrying a plate of food is a chore. I am also still having very strong withdrawal symptoms from all the drugs they had me on in the hospital. I just don’t seem to do well with the pain killers in particular. On one of my other trips it took me almost 2 weeks to stop shaking and feeling outside my body. i am having similar symptoms this time i think form the morphine they had me. sort of a pins and needles feeling constantly plus its almost like i can hear the blood coursing through my body. very weird feeling. I am excited today though because i turned on the tv and spring training baseball is on. its a nice feeling to know that spring is almost here and maybe i’ll be able to get outside and enjoy it soon. thanks for the continued thoughts. If you want some specifics to pray for, pray this withdrawal stuff goes away soon, especially the inability to sleep, as the insomnia is pretty bad. I am also still battling a bit of a cold so pray that, that goes away soon and doesn’t find a food hold while my body is still trying to recover. Can’t wait to see you all again maybe a week or so and i’ll be ready. To all my Lakeside Orangevale family i hope to join you soon, maybe even play a song or two and worship with you. See ya.

Adventures of Bubble-Boy – Day 20

Directly from Stephen’s Blog: Silhouette of You

Monday, February 23, 2009
The Adventures of Bubble Boy (day 20)

The last nine days has felt like hell. The last time i wrote my counts were just on the fall. By day 13 my immune system was completely zero. There is a number for this called anc or absolute neutrophil count. Mine anc on day 13 was zero which meant i was now as susceptible as ever to disease or sickness. So i just laid there. My mouth had been completely destroyed by this point and become a huge source of pain. I was like having the worst part of a flu except extended over a week long duration. The last couple days have been a little different. as my counts came back certain things have gotten better. my mouth seems to be returning and i have been ale to actually eat the last 2 days. on weird thing is the shakiness i am having. I believe i am having withdrawals from the morphine they had me on for a couple weeks straight. i believe this is what is causing the shakiness and on edge feeling i have because having come off diluadid before, a similar drug, the feeling are the same. Hopefully soon though i will be out of here. they are supposed to be pulling the line out of my chest this afternoon. they may have to add a smaller catheter in my arm for a few days so i can still continue getting some iv antibiotics which are much stronger than the pill form. apparently they will send nurses to the house each day to give the iv and and check up on me. this last iv is a very strong antibiotic i have been on the whole time that should hold of anything still trying to fight inside. the doctors think that the chest line i have in might actually be causing much of the leftover infection. Once that is removed hopefully my body can finally try heal up completely. hopefully this will all take place today and i will either go home tonight or tomorrow. not sure if i can do this whole thing again for a analogous transplant. I am praying that God has finally taken this burden and weight from me. i am very excited though to try to get healthy enough to go see MD Anderson. they are able to do traditional treatments too in case we want to do radiation or whatever. I struggled with God like Jacob in the desert asking for a blessing that i did not deserve. I love that story because jacob keeps fighting and even after being injured he stills holds on the man he wrestles. Jacob even says i will not let go until you bless me. at that the man asks his name. he says Jacob and the man says his name is Israel for he wrestled and overcame. Israel calls the place Peniel because he has seen God face to face. I have that struggle the past 3 weeks. arguing pleading with God that i am to tired to go on and need a blessing. i believe he has. dont know what that will hold but i want it to start today. i want to scream from the mountain tops that God has saved me. i want to sing day and night of the healing which is only in him. this is to be my lifes creed.

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Adventures of Bubble-Boy – Day 11

Directly from Stephen’s Blog: Silhouette of You

Friday, February 13, 2009
The Adventures of Bubble Boy (day 11)

I can’t imagine committing a crime. Not that am thinking of doing so. Being locked into one room for 24 hours a day is just not right. The last couple of days and the next couple of days are the most crucial in the healing process. At this point my White blood cell count is literally at zero. That means as little contact as possible with the outside world and basically i have to just sit here. Not that i have the energy to do much else. It’s a very interesting test in the strength of your mind. I have come to some peace about a lot of it though. I’m just giving myself the goal of making to the next meal and then sleeping. I have prayed constantly that God get me through this just safe and unharmed. I realize i will have to suffer the pain and frustration that goes with the transplant no matter what, but I do know God has protected me so far, and i thank everyone for praying the same. I absolutely am floored by the generosity and thoughts and giving of complete strangers. I have no words to thank people for giving to our trip to Houston. Rosemary and I are convinced that obviously there is a reason why we should be preparing to go there. I have always felt that the way God speaks to me is by either opening or closing a door. The answer always seem to be pretty clear that way. I have no idea what Houston could hold. I could be cured and go on to work a normal life again. I could end up on the other side of the world. At this point i don’t care. I just know i am willing to go all out. No matter how big or small my life maybe. So thank you. I can’t imagine how to repay everyone but i will certainly try by how i live here forward.

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