Sep 30: 9 pills

 The downside of self-treating at home is I have 9 different pills I take each day, some 2x a day. 

Still better being home. 

Fatigue has been extreme since getting home. Partly I assume because my counts are falling, including RBC's. 

Sep 24: His mercies are new every morning.

 The title of my post today is from verse in the Old Testament that promises us God's mercies are new every day.

I can know and trust in this because I know and trust the one that promises that made the promise 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.” 

That is why I am confident that God's mercies are new every day.

So I'd like to talk about transplant and screening because there's been a lot of questions.

Genetically the best direct screen was my brother. He was a half match which meant really he's not a match. My insurance paid for the genetic screening of his blood, which is not cheap.

So after those that are family related, the next best chance is the transplant donor base which is  bethematch.org 

It is a public charity though, so you can't directly screen for a donor from perspective donors. Potential donors have to decide to be a possible donor for people that might need it and cannot designate specific recipients.  If you choose to be a potential donor, it's basically a blood donation that gets screened genetically and paid for by the charity's donations. This screening genetic data goes into a big database that my doctors can check and all other doctors can check for potential matches. Even though they may not be family, somebody could be close to matching me in this big wide world. If you do decide to do it you could be a big blessing for somebody else. And you can simply choose to be a blood only donor for stem cells and so if it came up as a match for someone, your next step would simply be to give blood again. It's a little more complicated than that but that's basically it so I would encourage you to go on bethematch.org  and do a little research.

Grace and Mercy be upon you all today.

Sep 22: back in

Checked back into the hospital today for round two of chemo. I was really dreading it, but the Lord was gracious and gave me a better attitude about it. I also got good news that I will probably go home Tuesday or Wednesday. Yah!

Treatment starts with a pretreatment for the kidneys to prep them to handle the chemo. That'll happen tonight and chemo actually won't start till tomorrow.

So hug the people you love and tell them that you love them.

Sep 18: Benes of chemo

I sought the LORD, and he answered me and delivered me from all my fears. Those who look to him are radiant, and their faces shall never be ashamed.

Psalm 34:4-5 ESV

I like this verse. Maybe it'll encourage you today.

Benefits of chemo

1. Effective weight loss program - pretty much guaranteed to lose weight. Be gone tasty food. 
2. Save money on coffee. If you like coffee, on chemo, you won't. 
3. Naps are guaranteed and almost required.. 
4. Nobody will recognize you in your mugshot if you get arrested. Instant hair loss. I look like an escaped convict. 
5. Often cures cancer. Let's hope. 

+++++++++++++++

Not really looking forward to going back into the hospital Friday for Round 2 of chemo. Guess I'll be extending my "chemo benefits." Hoping for a 6-8 day stay, and not 8-10+ days. 

Prayers for my Mom & Dad. Dad has Covid, severe dementia. With me out of the game later this week, praying Mom doesn't catch it and Dad's case is mild. 

Sep 15: Transplant Update

 So, my brother is a half match, which means he's not a match. That puts the search for a blood stem cell donor for my bone marrow transplant back into the big pool of the donor database with a 1-2 month search before knowing anything to speak of. 

Followed up with my PCP, Dr. Thomas, who I found out is also a Jesus follower and prayed for me today at my visit. 

Fatigue a little less today, taste is still 90%. Coffee still not back in my good graces. 

God is still as big and as good as ever. 

Sep 14: Ring of Fire

 Worked a little yesterday at the office. Good to see people. 

Some odd side effects - light sensitivity; feels like my eyes have been dilated. 

Second is somewhat delicate topic of bm's. Let's just say everything seems normal, except I'm singing Johnny Cash's "Ring of Fire" at the top of my lungs and Prep H barely makes a dent. This is an earnest prayer request for relief. 

Taste is still slightly off on savor; bitter is heightened. 

Lack of stamina & fatigue are still buddies. 

But there is much good, starting with being at home, enjoying my own bed, my own food. 

Sep 12: Big Day at Docs and Future Look

Great day at doc's. Well, except passing out during the bone marrow biopsy. 

#'s look really good. Hyper-CVAD has 4 rounds. I just completed round 1A. 

Sep 22, I go in for about a week for 1B (different chemo mix), for chemo and monitoring. 

After that, go back home for a couple of weeks, then at some future date, rounds 2A and 2B. 

He seemed pretty optimistic that chemo can get us to remission/cured. 

Things to pray: Healing, Lesa taking care of herself in this, good round 1B, continued improvement between now and 1B. 

Thank you all for your positive thoughts and prayers. 

Sep 11: Never forget and a new week

 Let's remember September 11th; souls lost and incredible acts of bravery. 

It's a new week. 

Starting a new "low-dose" chemo tomorrow. Oncologist check-in tomorrow - lots of questions. 

Here's a couple of my questions

1. How long before the "remission" word might get used? 
2. What's the next 1-2 "Y's in the road" look like? 
3. Is there a next "hospital stay" semi-scheduled for the next chemo round? 

Some issues with my PICC site. Doesn't appear to be infection, but something circulatory going on. Prayers appreciated. 

Heaven & Hell

I believe, to be sure, that any man who reaches Heaven will find that what he abandoned (even in plucking out his right eye) has not been lost: that the kernel of what he was really seeking even in his most depraved wishes will be there, beyond expectation, waiting for him in ‘the High Countries’. In that sense it will be true for those who have completed the journey (and for no others) to say that good is everything and Heaven everywhere. But we, at this end of the road, must not try to anticipate that retrospective vision. If we do, we are likely to embrace the false and disastrous converse and fancy that everything is good and everywhere is Heaven.

But what, you ask, of earth? Earth, I think, will not be found by anyone to be in the end a very distinct place. I think earth, if chosen instead of Heaven, will turn out to have been, all along, only a region in Hell: and earth, if put second to Heaven, to have been from the beginning a part of Heaven itself.

From C.S. Lewis, The Great Divorce

Sep 10: In the Lord's House today!

 What a joy it was today to connect with our peeps at Lake Cities and worship Jesus. 

Fatigued and taste is still wonky. 

Sleeping in my own bed and cooler temps - priceless!

Sep 7: Cleveland Clinic link

I am moving into maintenance mode with my oncologists. We will have to wait and see what the next step is from the Lord God. 

Thank you all, near and far, for your incredible gifts of love, prayer and care. Who am I to be blessed like this? 

 Acute Lymphoblastic Leukemia (ALL): Symptoms, Treatment & Prognosis (clevelandclinic.org)

Sep 9 - It's true. I'm home, sleeping in my own bed.

 The staff at BUMC and specifically T. Boone Pickens Cancer Center were over the top caring, amazing, loving. 

God bless T. Boone Pickens for giving people like me such an inviting, comfy place to recover and God bless the staff for their love and care. 

Sep 6: OH HAPPY DAY!!!

 remember that song from the 60s? Oh Happy Day!

They are telling me that I get to go home today. All my blood counts are looking good I'll go home with an antiviral oral chemo and a couple other drugs for management. Supposed to get my PICC out today. Lord willing, I will be eating my own food tonight and sleeping in my own bed tonight!

What a journey, what a blessing. Nobody would ever choose leukemia, but God has used this in so many ways, so so many ways to bless me and I believe to bless others.

So.....

How can I pray for YOU today? 

Sept 5: A.L.L. Treatments

 I'm slowly gaining a better understanding of what treating this leukemia is going to be like. So, there's two major tracks:

•  chemo and 
• stem cell bone marrow transplant.

There are very good treatment protocols using chemo that can result in both short term and/or long-term remission. Anyone one of these cycles could result in a longer-term remission. It just all depends on what my body does with the chemo. With chemo, it all depends on how your body responds. They're now thinking I might go home this week because my body has responded so well all of a sudden. Or it could change in not. It's a little swirl from day to day knowing what might be next, Will it be at the hospital? Will be going home will it be a week or tomorrow?

The star treatment and the hope in this is a blood stem cell bone/marrow transplant from a close match donor. This has the highest success rate, higher than the chemo but if there's not a donor match then it's not an option. My brother is coming today to donate blood for the genetic testing and genetically he has a one in four chance of being a perfect match for me. So that would be wonderful if he could be that perfect match. 

Jesus was my perfect match for eternity, my brother may be my perfect match here on Earth. We shall see. 

it's gone

Sep 4: A lotta "if's" ahead

 So learned this morning that I'll be in here for at least another week maybe 10 days. Then I'll probably get a 7-to-10-day home pass Then I'll have to come back for another 10-to-2-week episode of round two of chemo. Somewhere in the middle of that or after that the stem cell bone marrow transplant might become a factor if there's a match. It all depends on the match being available. 

Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the Gentiles seek after all these things, and your heavenly Father knows that you need them all. But seek first the kingdom of God and his righteousness, and all these things will be added to you.

 “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.

Tony Evans put it this way in his Bible Commentary on Matthew 6:34:  "Today is the tomorrow you were worried about yesterday. Focusing on living for God’s kingdom today is the antidote to worry."

Sep 3 Hair Loss begins

I didn't realize I'd pick such a gloomy doomy theme before for the blog. Picked a new one that's a little lighter and less gloomy. 

Well, I guess I'm going to get to find out what it's like to lose all my hair, hey! Pulled a big clump out this morning, Hospitalist suggested most people decide to shave just because it makes things ultimately easier. But they don't want me to cut myself so, go figure.

And mouth sores are just barely beginning. I don't think the hair loss is a big thing maybe it'll affect me more than I think, but the mouth sores yeah, I would appreciate your prayers that those will be held to a minimum.

An IT geek's guide to leukemia treatment

 First round of chemo equals a clean reboot, reload windows but leave data files.

Monitoring and maintenance of the immune system after first chemo equals monitoring and maintenance of the windows system making sure antivirus, security tools, et cetera are working correctly.

Stem cell treatment replacing bone marrow equals replace the hard drive and load windows fresh to remove any ransomware or rootkit.

The Problem of Pain

 The Christian doctrine of suffering explains, I believe, a very curious fact about the world we live in. The settled happiness and security which we all desire, God withholds from us by the very nature of the world: but joy, pleasure, and merriment, He has scattered broadcast. We are never safe, but we have plenty of fun, and some ecstasy. It is not hard to see why. The security we crave would teach us to rest our hearts in this world and oppose an obstacle to our return to God: a few moments of happy love, a landscape, a symphony, a merry meeting with our friends, a bathe or a football match, have no such tendency. Our Father refreshes us on the journey with some pleasant inns, but will not encourage us to mistake them for home.

From The Problem of Pain
Compiled in A Year with C.S. Lewis

Fri, Sept 1 Can I go home?

 Had a great day to day; feeling great ready to go home, but they just won't let me.

Gonna be here at least another full week because of managing the chemo effects and planning the next step.

The nurses and doctors here had an interesting question they were kicking around and so I'll throw it out to you, " If you're in a coma, what song would you want to hear that would bring you out of that coma?” I'll share my answer in a follow up comment. I have 3 songs - a spiritual, classical, and rock answer.

I know it's weird to hear probably, but this has been one of the most blessed weeks and a half in my life.