Nov 5, 2024 Election Day

On this crazy election day, a song. 

Be Still My Soul

1 Be still, my soul; the Lord is on thy side; bear patiently the cross of grief or pain.

Leave to thy God to order and provide; in every change He faithful will remain.

Be still, my soul; thy best, thy heav'nly Friend through thorny ways leads to a joyful end.

2 Be still, my soul; thy God doth undertake to guide the future as He has the past.

Thy hope, thy confidence let nothing shake; all now mysterious shall be bright at last.

Be still, my soul; the waves and winds still know His voice who ruled them while He dwelt below.

3 Be still, my soul; when dearest friends depart, and all is darkened in the veil of tears,

then shalt thou better know His love, His heart, who comes to soothe thy sorrow and thy fears.

Be still, my soul; thy Jesus can repay from His own fullness all He takes away.

4 Be still, my soul; the hour is hast'ning on when we shall be forever with the Lord,

when disappointment, grief, and fear are gone, sorrow forgot, love's purest joys restored.

Be still, my soul; when change and tears are past, all safe and blessed we shall meet at last.

 https://youtu.be/kqKVFYD8Obc?si=liP6BzQVFF4JkGpO

Nov 2, 2024 Waves of Pain

The past 48 hours have been more challenging. 

Because I do not have an immune system, certain aspects of the body just don't heal. For example, mucus membranes and other sensitive areas of the body. Mouth sores develop because the healthy immune system and healthy white blood cells are not there to heal it. Antibiotics can keep you from getting an infection, but it doesn't coordinate the amazing design that God created in us to heal us through our immune system. Waves of pain hit me on a level 5 to 8 depending on what's kind of going on with my body at the moment. I do get respites, but I've been waking up about every hour between having to eliminate fluids from the IV or a wave of pain hitting me. I know and trust my God has a perfect plan, but in those moments of intense pain, I don't understand, and I can only cry out for His merciful touch and healing.

Treatment goes well otherwise and Monday my Blencyto level will be bumped up and they'll watch me closely for 48 hours and if no side effects pop up, then will probably send to me home with an infusion pump for the next three weeks or so. Yea!

I think this is a worthy read. 

Trusting God Through Doubt: Q&A With Lysa TerKeurst | Bible Gateway News & Knowledge

Oct 31, 2024 All Hallow's Eve

 Good morning

I'm no historian but I understand November 1st used to be the real focus, which was All Saints Day, rather than Halloween. 

Things have been a little more challenging the last 24 hours. I have a bleeding GI issue. The bleeding's not bad, but I am asking for prayer for protection from sepsis. There's also some pain at the exit. God bless those that give blood I have received both red blood cells and platelets yesterday in two transfusions.

I'm now on all the antis, e.g. antibiotic, antiviral and antifungals. My immune system's pretty well shot. Nothing helpful really going on in the white blood cell department.

I ordered a Velcro dartboard for the room just to help stave off some of the boredom. We'll see how that goes.

May God bless you and keep you today. May His face shine upon you. May you know deep in your soul of His compassion, mercy and Grace.

Oct 28, 2024 Hospital Hermitage

My hospital Hermitage

It struck me this morning that I’m in a Hermitage of sorts. My hospital room is 12 by 24. It has mostly all I need and many people have brought me good things to enjoy for my wants. I even have Gregorian chants that I can play in the background. I don’t think the hospital will let me light up incense though. Lots of contemplative time to spend with God. I ponder, I listen for his voice, in both scripture and in the quiet spaces.

Coming out of remission has been hard. The path ahead is not nearly as clear as it was a year ago. Plan B’s are always more squishy. I missed my fall - my favorite time of year, sitting on the back porch at sunset in front of the outdoor fireplace smelling the pinion and juniper burn, Feeling the crisp cool air, seeing the glory of God displayed in the fall colors.

 The Lord continues to show me great kindness, mercy and Grace daily. My heart is not troubled, it’s very much at peace which absolutely is not my nature. I thank Him That. I am thankful for the many opportunities to pray for my caregivers, to encourage them in their faith, to be a listening ear who will listen to their challenges of life and perhaps help them walk a little more in tune with what God has planned for their lives. I am blessed, despite the leukemia, despite being stuck in a hospital. I pray blessings upon your day, that the grace of our Lord Jesus Christ would be upon you and yours. May His face shine upon you, may His blessing be upon you May you know the goodness and the compassion and the mercy of our Lord Jesus Christ. He is truly the God Creator worth knowing, worth your time.

Oct 23, 2024 Big Improvement in #'s

Well good news this morning. My numbers on my white blood cells dropped way down from 184 to 33 this morning. This means I'm much closer to being able to start the Blencyto, which is the best Plan B. The fatigue definitely dialed up today -  probably the Sprycel oral chemo. 

Working really hard at trying to keep my stamina up. 20 minutes on the treadmill this morning and hope to get in a solid 30 minutes this afternoon I think that's my best option for keeping stamina up. I also have some home PT core exercises that I can do here at the hospital so we'll try to keep those up.

One of the challenges in this is to see a hospital stay as not just a sideline but where God has me for a purpose.

In His grace - may his grace be upon you today upon you and yours.

Oct 22, 2024 The Challenge Grows

Well the challenge grows today. WBC did drop a little today, but still high at 185.

News that I'm gonna be here for 3 to 4 weeks as they work to get my white blood cell count down and then start the Blencyto treatment. Not gonna lie, really didn't wanna spend time here in the prime of fall and sorely missing my pickleball time.

Still trusting God and his plan. Walking in faith not by sight.

it's Back.

Well this past Friday was a big surprise. I had a colonoscopy and everything was good and clear but that morning I could tell that something was going on with my arm. What I thought was a DVT in the arm where I had one before during my first chemo round back in August of 2023.

After the talk to my transplant oncologist, he had me come in to get the DVT properly diagnosed. They also drew blood and discovered that my white blood cell count was up around 138, when it should be 9 to 11. So they admitted me to the hospital, started strategizing plans, and here I am today. It started with Sprycel which is an oral chemo to get my numbers down, and then hopefully in a day or two can start Blencyto which is a infusion biologic for acute lymphocytic leukemia.

In some ways this has been harder than the first diagnosis I had a good 8 months of feeling good no symptoms posts donor transplant. I'm grateful it was caught early and so they don't think I felt any of the symptoms I felt the first go round. The treatment plans are definitely squishier cause they're all Plan B's. but again, our God is not ruled by statistics so his plan is good and perfect even if I don't know what the details are and what the outcome will be.

Prayers of healing are appreciated and not taken lightly. Prayers for Lesa and the disruption that this causes in our lives.

WBC is 194 today. 

God is good.