Tag Archives: 10;17 chromosomal translocation

Keep your eyes on the path

Bryan and Marcia Thayer

Bryan and Marcia Thayer

We recently took a relaxed, 3 day agenda-free back roads trip to view the autumn leaves of northern Iowa, southern Minnesota bluff country, and SW Wisconsin. Our goal was to celebrate life together, redeeming the time we have by making life memories, and enjoying God’s creation.

There is something both exhilarating and calming about being surrounded by the beauty of nature. Not just the beauty of the changing leaves, but of the immense creativity and variety of things God has created for his and our pleasure. The trees and flowers, the wildlife, the warmth of holding hands as we hiked, the sound and feel of the gentle forest breeze, Marcia’s loving patience with me as I slowly made my way along the challenging paths… All these speak to a gracious and generous creator who loves us so much to bestow such gifts upon us. Even a walk through a completely spent prairie restoration area, now basically a field of ‘weeds,’ spoke a certain peace to our souls.

On our forest hikes, our eyes were constantly on the watch for the wildlife but also focused on the trail to keep from stumbling over exposed roots and rocks. It served as a reminder to maintain vigilance and awareness of God’s abiding presence all throughout the day’s journey. Our constant awareness of his presence in our lives provides us with his protection with each step we take.

Where do you find real restoration? How does God’s creation speak to your soul? And how does he speak to you as you step through the paths of a common day? May he use those steps to remind you of his abiding presence and how much he cares for you. And may you, in his presence, find great satisfaction!

“Give careful thought to the paths for your feet and be steadfast in all your ways.” Proverbs 4:26

“For since the creation of the world God’s invisible qualities—his eternal power and divine nature—have been clearly seen, being understood from what has been made, so that people are without excuse.” Romans 1:20

“Seek the Lord and his strength; seek his presence continually!” 1 Chron. 16:11

Medical update

Some folks have asked for more medical updates on our journey with leukemia. I usually weave these into the post for the day. And you can always use the blog search button to search for key words like update, Leukemia, etc. That said, here is a separate update.

Things are going so well, there’s not a lot to report, (thank you God). I made it through my first six months post stem cell transplant without fever or infection which is very good news. I continue to take precautions against infections but am generally released to normal interactions.

Except for the three months of not eating and being mostly bed ridden, the Graft Versus Host Disease (GVHD) has been minimal. And that seems to be resolved with the steroid treatment which has returned my normal appetite and allowed me to start gaining some of the 33 pounds lost during the spring and summer. The steroids again caused temporary diabetes which isn’t as stable as the first time around, but then it’s temporary. I am weaning off the steroids now and hope to be off them and the insulin by Thanksgiving. Steroids are a wonder drug but also can cause you to be ‘wired’, anxious, irritable, sleepless, etc. so it will be good to be off them!

I am tired every day and have to rest more than I am used to doing. But I really enjoy having more energy than I did and being able to get out in the community, take up to 1 – 1 1/2 mile walks, visit with more people (!) and start to help a little around the house, putting dishes away, and small things like that. Problem solving, concentration, and memory impairments continue to be a frustration but hopefully will improve over the next year or two.

I am excited to have started my childhood vaccinations since these were all lost in the treatment process. I got my first child level pneumonia vaccine and a four-strain influenza vaccine this week. I’ll get more pneumonia vaccines, working up to an adult version, plus most the other childhood vaccinations (polio, MMR, Diphtheria, tetanus, etc) over the next 18+ months as my immune system repairs itself enough to tolerate live vaccines. Taken too early the vaccine could transmit the actual disease. Due to that risk, the team tells me I might not be a candidate for some vaccines like chicken pox and shingles. The schedule for vaccines puts off a Bolivia move until summer of 2015 at earliest. Another factor influencing that is it may take another year or more to increase the number of bone marrow cells to their full numbers. Currently I am at 25-30% of normal production. Platelets, which God created to repair and heal our system, are still frustratingly low. Some of these things are just a matter of waiting.

Of course, the really good news is that the last bone marrow biopsy shows NO abnormal cells, <1% "blasts (normal), and NO indication of the very rare 10;17 chromosomal translocation that started this whole leukemia process in the first place; also NO indication of the presence of the 'aggressive' chromosomal markers at CD7 and CD56. Cancer continues to be in remission. Next test isn't scheduled until April 2014, unless problems occur.

So overall, an excellent report. Life is much slower these days, with increased time for meditation, reflection, and prayer; time for enjoying God's creation, and redeeming the time we have with others. JRR Tolkien's famous quote is applicable for all of us:
"All we have to decide is what to do with the time given us."

To quote Indiana Jones, "Choose wisely."

Medical Update 5/21/2013

Yesterday’s clinic visit explained:

  • I continue to be cancer free and none of the rare 10;17 chromosomal abnormalities are observed.
  • 96% of my T cells and 100% of my tissue cells come from my donor. In other words, the engraftment is working and my DNA change is nearly complete.
  • My steroid induced diabetes is definitely temporary and I can now reduce the steroid to 1/4 original strength.
  • My tremors and burning skin problems are also both temporary.
  • There is nothing that absolutely prevents our plans for full time ministry in Bolivia, but there are also no guarantees. Everything depends on whether there is relapse, severe Graft Versus Host Disease or any number of other medical problems that could still present themselves in the next two years.
  • The schedule to replace all my childhood vaccinations will take 18-24 months; hence the delay for US and international travel.

While I am getting “out of the gates” with a strong physical and spiritual start to this marathon, mentally I continue to be challenged by memory, concentration, and decision making/judgment issues. I keep a memo pad with me to record most thoughts and to-do items as memory often is limited to minutes. Marcia keeps close tabs on me.

We are greatly encouraged by today’s reports, and are content to wait upon the Lord’s timing for our eventual move and also for His season of preparation and service for us while we wait. How immensely merciful God continues to be to us.

Please join us in praying for Pastor Evan and his devoted wife Jill. Evan is in much discomfort as he waits, in the coming hours it seems, to make his transition from this life to His new life with Jesus in heaven. My battles are so very light and not worth mentioning, in comparison to the valley of death this couple is facing. And still, they would join me in praising God in the midst of their pain and sorrow. Such is the power of a real personal relationship with Jesus Christ.

Living the Adventure – 5/9/13 Update

My counts are down today, but that is normal and explains my fatigue. My donor cells are working. They are just producing baby cells right now and it take them time to mature. With time I will have more and more mature cells in production and I will have more strength. It likes how you and I mature in our faith walk. My doctor thinks I am doing excellent. I tease her that she wants me to be the poster boy for my rare 10;17 chromosomal condition. I am number twelve in the world with this dubious diagnosis and it may warrant her a good research paper. She shuns with great humility when I suggest it is to her credit. Blessings on Dr. Silverman.

In the meantime, this adventure is like many, an always uphill struggle. But if it were not so, what would make it an adventure? A walk in the park is pleasant but not nearly the adventure as a mountain climb or a white rafting experience. Don’t settle for the easy life, content with whatever pleasures sidetrack you. The treasures of heaven are here now, not just when you die. Find your adventure. Stick to it. The ultimate adventure is living life with Christ in good times and in struggles. There is a sustaining joy, a supernatural strength to bear up under the challenge, a companionship that never ever abandons. It is found not only in the great adventures but in the adventures and troubles of every day living. It is yours for the asking: forgive me Lord Jesus, accept me, teach me, be with me.