Day 100 +1 - A long term strategy

 Day 100 +1 - A long term strategy

Saw my transplant doc yesterday. Officially passed the 100 day post-hospital transplant mark. What does that mean? It means I don't have to have Gary-sitters any longer. Doc P also had me reduce my last immunosuppressant by 1/3, and if no complications, I'll reduce it another 1/3 to 2 pills a day versus the original 8 pills a day. If everything goes smoothly, then I understand I'll get to go off them completely in a month.

It also means I move into watching for acute GVHD signs to chronic GVHD signs. Please pray to that end - that no chronic signs come up down the road, no going back on immuno's and no "refresher" course of donor stem cells. Last report was that my bone marrow is 100% donor origin, which is great news. 

I am grateful to all that have prayed, have given rides, "Gary-sat" me, offered words of encouragement, and other support both seen and unseen. Mega-kudos to Lesa who was a real trooper going back all the way to the beginning of the journey starting back on Aug 18, 2023. 

An eternal strategy. 

I have an eternal hope in Jesus and the salvation He freely gave me. Do you? Don't put it off; no one knows what tomorrow holds without Jesus. 

Romans 10 says that if you confess with your mouth that Jesus is Lord and believe in your heart that God raised him from the dead, you will be saved. For with the heart one believes and is justified, and with the mouth one confesses and is saved.  For “everyone who calls on the name of the Lord will be saved.”

June 2: 13 days left

 13 Days left of close monitoring

It's been quite the journey that began on Aug 19 with a 2am ride to downtown Baylor via ambulance from the Rowlett ER and a bone marrow biopsy the next morning. 

As journeys like this go, I think I've been very blessed and spared some of the worst. Yes, I had my bouts of nausea and intestinal challenges, fatigue, hair loss, etc. but overall, my journey has been mild compared to some, and still have a challenge or two. 

I will close this blog come day 100. Thank you for being on the journey with me. Thank you for your kind thoughts and prayers. 

May the road rise up to meet you.

May the wind be always at your back.

May the sun shine warm upon your face;

the rains fall soft upon your fields and until we meet again, may God hold you in the palm of His hand.

May 18: Home stretch of sorts

Yesterday was day 72 of the 100 day monitoring regime and a visit with Dr. Pineiro. 4 weeks to go.

• Very grateful to have made it to here with little/no GVHD symptoms. 
• 3 drugs were either reduced or dropped at my appt yesterday
• Some drugs may extend beyond 100 days, but close monitoring will end on day 100 unless complications arise.
• My next doc visit will be day 100. Visits will continue after that, probably monthly for awhile and then less frequent for the next 2 years.

Despite my biggest pain challenge, I am grateful to God that so many potential challenges with the transplant have not materialized. Coming up on a full circle of seasons. I started this leukemia journey late last summer and weathered the challenges through fall, winter, spring and now coming back into summer. I thank you for your encouragement along the journey, your help, your care. Time will tell what the next big step holds in this journey. 

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:17

Blessings on you and yours today,

Gary

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