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

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.

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.

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.

the Adventures of Bubble Boy (day 9)

Wow nine days. Now really begins the waiting game. For the next week i just have to sit here while my blood counts and body fall apart and try to start over. One of the nurses told me it's like another birthday. The way this transplant works is as my old defenses die off and the new stem cells begin to grow, my body will try to recognize the cancer and actually fight back. I am exhausted. I am not really sure what i want to say here. My brain is finally coming back into focus but i also feel as scattered as ever. No one really sleeps in a hospital but i particularly have not slept since i have been here. I am wrestling with God every second of the day. I have always felt a purpose in my life that seemed so great, a calling that i could never fully explain. I have been in church my whole life and now feel like somehow i was never there. I remember being filled with the Holy Spirit for the first time and speaking in tongues freshman year and saying to God whatever you want is what i want. I feel like though i've spent my whole spiritual life knowing the book smarts but never knowing God. In the past few months i've figured this is all part of the plan i guess. Just follow the steps. For the first time I am beginning to realize if i ever want to do something for God i need to know Him. Not the basics of theology or how to play church. I need to know Christ. The passion i have to do something great must be a greater passion to know God. It's a rebirth. Just as the nurse had mentioned I want to start over. Amazingly I can. I am frustrated but focused. I realize this post is mostly just rambling but I just felt i needed people to know that i am trying to move forward. I realize there is nothing i can do to earn God's favor or mercy and for the first time it makes me hopeful. God is doing something so amazing with all you people who are helping out and offering to not only get through this stage but on to Texas. I have no clue what that means or why it seems to be happening so easily but as i wake this morning i am confident am i finally standing in the right direction.

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