Main Page • John's Journal (2000-2003) • CLL Information • Contact John • Seattle Cancer Care Alliance • MD Anderson

April 30th 2006

 

“ Therefore, my dear brothers, stand firm . Let nothing move you . Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.”            1 Cor 15:58

 

“ Be on your guard ; stand firm in the faith; be men of courage; be strong.”

1 Cor 16:13

 

Making it through this current struggle continues to be made so much easier by the constant support of family and friends.   I am grateful when my days are broken up with uplifting emails, phone calls, and visitors.   It's comforting to know I am not alone in the battle.   I'm sorry if I don't always snap a picture of everyone who stops by or return every email, but know I am grateful for each and every one of you.   You help me and my family more than you will ever know.

 

 

Not much new from yesterday.   Doctors are still waiting to get more test results back from Pathology.   My doctors' strongest theory right now is that there is some type of microorganism present, they just can't identify it.   There are some pathogens they just don't have tools to identify.   Everything they've tested for so far has come back negative, except for Norwalk which is still pending.   Treatment wise, it is a difficult decision for the doctors.   Do they lower my immunosuppression medications so my body can fight the bug (if that's the problem?) naturally?   The consequence being if they lower the immunosuppression and GVHD is the problem, than the GVHD could worsen and create problems.   Please be praying for the doctors' wisdom in making the best treatment decision.   I continue to have frequent, high volume, liquid diarrhea.   This has been going on for 28 days now.   The main thing that is keeping me hospitalized is how fast I lose water.   If I left the hospital I would dehydrate quickly and have to come right back in.   Currently they are collecting 24 hours worth of stool in a bucket and will be running more tests on it to test for how I am digesting fats.   Just one of the hundreds of tests they are running.   My doctor's plan is to have enough information from all the tests to make a treatment plan by Wednesday.   He wants me out of the hospital, but needs to know what he is treating and how to treat it effectively before I leave.   My doctor remains positive that they will figure this out.   I remain prayerfully confident as well.   The doctor did say he has never seen a case like mine before, for my symptoms are so unique.   They don't act completely like GVH and they don't act completely like an infection.   Perhaps I'll be in some medical journal someday.   What a fun thing to be remembered for.

 

 

 

 

I have mentioned many times before that this is a very difficult battle not just physically, but emotionally and spiritually.   My emotions go all over the place throughout the day.   Throwing in high doses of Prednisone doesn't help matters either. I made a decision yesterday to be proactive against this current situation.   It started with prayer, asking God to give me courage, patience, and a trusting heart.   I have decided I must stay vertical.   I must keep moving.   So yesterday I got out of the bed and stayed out of it all day.   I walked, I rode stationary bike, I walked flights of stairs, I did push ups.   I just kept moving.   I see how weak and tired my body has become through this and I just have to fight back.   The stationary bike rides were the best.   When I was riding yesterday a real passion came over me.   It was an angry passion.   I was mad.   I was mad to be in the hospital, mad to be sick, mad to be missing out on the joys of my normal life.   However, the anger wasn't negative.   The Lord was turning my anger into an intense, strong passion to fight…to keep the faith, to keep pushing, to not give up. As I felt this anger build I pedaled faster, and harder.   I would look over at pictures of my family and the feelings intensified.   By the time I was done pedaling I felt so energized and alive.   (Very sweaty I might add.)   Hope and determination were just bursting out of me.   I know God gives us our emotions.   I thank Him for taking my emotion of fear and anger and making them positive.   I am not angry at God, I am angry at my situation, and am going to use this anger as fuel to fight harder.   I just have to go back to the Lance Armstrong Quote I used recently.   It's a little harsh, but I love the passion in it and feel it is worth repeating:

 

“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.”

 

Lance Armstrong

 

 

I will close with this final quote.   It really sums up one of the important lessons I got out of my day yesterday.   I thank God for this opportunity to create in me the character to make life great…whatever my circumstance!

“ The purpose of Christianity is not to avoid difficulty , but to produce a character adequate to meet it when it comes. It does not make life easy; rather it tries to make us great enough for life. ”   James L. Christensen

 

 

 

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