Nov 20: The Gray Layer of Life

Too dark? Do I get the one-year warranty or the lifetime warranty, or are they the same thing? 

The gray layer of life - like a never-ending Portland, OR layer of cloud cover over your life. What's that look like? 

• Maintaining a 4x a day pill regimen
• My Infusion Buddy fanny pack always at my side, at least for the next 2 weeks. 
• Pain is not if, but how much. The 1-10 Pain Scale is familiar territory. 
• Always having to check any future plans against your calendar because you cannot remember the weekly doc appts. 
• Juggling pain relief vs pain reliever consequences. 
• Fatigue is not if, but how much. 

Please don't get me wrong. There are things God shows you in this battle - about Himself and yourself and your relationship with Him that are beautiful and faith-inspiring, but it IS a battle. For in spite of it all, He IS my joy, He IS my rock, He IS my very present help in my gray layer of life. 

If you're reading this and have doubts about who God is or would like to explore the whole faith question, I'd love to have a convo with at your favorite beverage joint or just simply over the phone. 

His grace is on me. John 3:16-18

God's grace be upon you all today!

Nov 17: 19 minutes of trust

 My infusion pump pushes 0.6ml/hr of Blencyto into my vein every 19 minutes, 24/x7. It "trusts" that I'm connected, able to accept the push, and sounds an alarm if it's unable to push it to my vein. 

(2 second mechanical push sound)

Friday night that trust was broken. (2 second mechanical push sound, pump starts squawking)

Saturday, at noon, that trust was established again. 19 minutes > a 2 second mechanical pump sound > 19 minutes > a 2 second mechanical push sound > repeat. 

So... how's your connection with God, with your spouse, your community of friends, family and faith? Do you check in every 19 minutes? How often? Every relationship has a "healthy" interval and "unhealthy" interval. With people, unhealthy might be too short, e.g. dependence/enablement, like texting your spouse or friend every 6 minutes to check on them. Unhealthy - days or weeks. Some friend relationships are good with every few days or even weeks. You're probably connecting with good friends more often than not, whatever works well for the both of you. The big one, the vertical connection, e.g. you & God. How often? When do you start to get uncomfortable when you haven't checked in with God? Pray without ceasing, as Paul says. How does that even work?  Our God throughout the Old Testament and New reminds us to remember.  Jesus says many times, “It is said... which is a NT way of saying, “remember.””  

(2 second mechanical push sound)

Is there an alarm sounding in your relationships?

Grace be upon you all,

Gary

Nov 16, 2024 An Added Layer of Life

Leukemia treatment adds another layer to your life that demands your time and energy, and sometimes your money. It does not ask permission to take over and usually moves itself to top priority whenever it intervenes. 

I got tangled up in the line to my infusion pump and managed to pull the quick-disconnect loose at 2230 last night. Imagine the quick-disconnects they have on gas pump handles at the top of the gas pumps. 

BUMC has an after-hours just for oncology peeps. Trip down there and got home at 0200. (Think IV needle in chest port and about a 4' IV line to the portable infusion pump I've been carrying at my waist.

Long story short, not their finest hour. Nobody was there that could properly reconnect and restart the infusion pump. Between what the nurses have certifications for (think chemo handling protocol) to potential contamination when the connection busted and then someone with the know-how and authority to restart the flow of a powerful drug that you can't risk overdosing on.

So, waiting to hear back this morning that there's someone there that can actually do the job.

Time: So my schedule is not my own this morning. I am at the mercy of those at BUMC to sort out and figure out the next step. Time spent last night and most likely today shuttling downtown and waiting.

Energy: Draining and frustrating as I can't start any "project" today until this gets sorted out. 

Money: 2 round trips of travel costs to downtown and back. Whatever they end up charging me for breaking the pump connection/reconnect. 

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.