May 10: 65/100 Closing in on the Target

 A month and a half more of this, then FREEDOM (I hope)

Fatigue seems to be the primary symptom still. I sleep about 9 hours at night, and can snooze/nap at a drop of the hat during the day, given the opportunity. The bigger issue is the chronic "exit" pain that starts my day. Some days it subsides in an hour or so, some days like today, in continues to ebb and flow through the day. I've yet to figure out rhyme or reason to it, something about my diet being the most obvious factor. 

I am grateful. It could be so much worse. I've been spared almost all the symptoms of GVHD. Some people really have a tough go of it. My WBC's are 100% donor. I've not had to make a trip to the ER for anything. 

Perspective. 

2 Corinthian 4:17-18 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

May your day be one of blessings, grace, mercy and most of all, love.

G

Apr 23: 48/100 Post Transplant Weaning

 Good news last week - my white blood cells show to be 100% of donor origin. It would appear we got a very clean transplant. 

GVHD could still pop up, but really seems to be the same old, same old at this point. Doc indicated probably no change in meds/immunosuppressants until we get around day 80 or so. That could all change if GVHD were to pop up on the scene. 

So, almost halfway there. 

2 Corinthians 1  3 Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, 4 who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. 5 For as we share abundantly in Christ's sufferings, so through Christ we share abundantly in comfort too.

The describes the challenge I have with my "Exit" pain. 

Apr 11 35/100 A Boring Blog

 Boring can be good in its own way, sometimes. 

Still taking 24 pills a day. 24's better than 30.

Still no GVHD - very grateful for this.

Still struggling with chronic pain with "Exit" issues - healing in this area eludes me. Prayer for healing appreciated. A possible botox treatment was denied by insurance. 

My hair has decided it's spring and starting to sprout. Maybe I'll have hair for the summer. 

Grateful for the mild spring and wet spring. Hoping for a slow ramp up of summer in June so we can get some tomatoes. 

Grateful for so many that have prayed, are praying and the support of the community of The Grove Community Church. 

Mar 30 25/100 When Living is the Challenge

 When Living is the Challenge

When daily pains become a daily challenge

When you get a third or half done of what used to be a "normal" day.

When foods are more filling than satisfying and you take another bite, hoping it has the taste and savor you expect. 

When pill taking drives a big part of your daily schedule. 

When the world today is not the world you knew 9 months ago. Maybe what was is not the reality we now live. In 1 Peter, we're reminded we're sojourners, strangers, aliens, exiles in this present world. As children of God through faith in Christ, we're not home yet. 

G

Mar 19: 14/100 The slow, steady slog

 The slow, steady slog

• 30 pills/day
• Fatigue that requires a rest between steps of activity in a project. 3-4 rests in spreading a bag of mulch. Using a 2-wheel dolly to move most anything. 
• Foods just don't quite taste right; appetite is hoping another bite will taste better. 
• Frequent mini naps. The ability to close my eyes and drop my head and almost instantly snooze. 
• Other bodily challenges. 1 Sam 5-6 (KJV)

This trellis project took lots and lots of rests and help from a couple of friends, Gary E and Keith M. 

O LORD, you are my God; I will exalt you; I will praise your name, for you have done wonderful things, plans formed of old, faithful and sure.

Isaiah 25:1 ESV

Faith, hope and love in Jesus to you and yours,

G

Mar 9: Day 4/100 The long, slow march begins

The 100 Day March to no immunosuppressants and "normalcy" begins. 

After being release Tue, I had 2 appts this week on Wed & Fri. On Friday, they ended IV antibiotic infusion, ended IV fluid boost and pulled my PICC line. If IV is needed, we'll use my port.

Went to 1 day/week appt starting next Friday. 
There will be a continued balancing of immunosuppressant drugs to prevent GVHD, but allow my almost newborn like immunity to mature. My immune system is like a newborn's system. It has no memory of that cut on my finger, the road rash from my motorcycle accident, the myriads of colds, flus, odd little sicknesses of 65 something years. 

In 6 months, I'll repeat most all my childhood vaccines to regain that protection. The immune memory of my Shingles vacc 4 years ago - gone. In that sense, it's like a new, second birth of my immune system. 

The spiritual parallel. 

Now there was a man of the Pharisees named Nicodemus, a ruler of the Jews. This man came to Jesus by night and said to him, “Rabbi, we know that you are a teacher come from God, for no one can do these signs that you do unless God is with him.” Jesus answered him, “Truly, truly, I say to you, unless one is born again he cannot see the kingdom of God.” Nicodemus said to him, “How can a man be born when he is old? Can he enter a second time into his mother's womb and be born?” Jesus answered, “Truly, truly, I say to you, unless one is born of water and the Spirit, he cannot enter the kingdom of God. That which is born of the flesh is flesh, and that which is born of the Spirit is spirit. Do not marvel that I said to you, ‘You must be born again.’ 
“For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life. For God did not send his Son into the world to condemn the world, but in order that the world might be saved through him. Whoever believes in him is not condemned, but whoever does not believe is condemned already, because he has not believed in the name of the only Son of God. 

May your day be filled with the grace and mercy of God

G

Mar 7: +28 Anybody up for pill bingo?

 

I am VERY, VERY, VERY happy to be home. 

Fatigue is a big thing. They warned me, but it still a little bit of a surprise. I did a small project yesterday - made a little 45 degree mounting bracket for our ring camera. It was all I could do to get the tools put up at the end. 

I still covet your prayers, as the next 100 days is a constant monitoring for infections and GVHD (graft vs host disease.) The burden on me and Lesa to get me to doc appointments downtown 2-3 times a week is wearisome. The visits include labs and infusions and can last 2-4 hrs, Thank you all to those have helped with that. 

UPDATE: A Praise. After Friday's visit, they're cutting me back to 1 day/week lab/doc visit. Also pulled my PICC line and no more anticipated IV fluid or IV antibiotic push. 

I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need. I can do all things through him who strengthens me.  Phil 4:13-14

I am still learning this. 

Faith, hope and most of all, love, be yours in full measure today. 

G