Jun 20: Back to the beginning

The Battle heats up. God is my strength and shield, a very present help in time of trouble, therefore I will not fear.. Ps 46 

Counts didn't come down like we'd hoped. Still in the low 70's as of Friday, Jun 20, so no Besonza today. 

So...

Going in Monday for 4-5 days of chemo like I had at the very beginning, hyper-CVAD. CAR-T needs lower counts to work. also going to get a boost of donor cells next week. The high counts will overwhelm the treatment, otherwise. Hopefully, harvesting my cells in 3-5 weeks for the CAR-T. 

Tough weekend. The hydroxyurea they put me on Friday has given me non-stop Charlie horses in both calves since Saturday night. I walk like the Tim Conway old man character in the Carol Burnett Show. 

June 19: Started Plan D treatment 3 days ago

Started with Dethamexasone on Monday.

Next, first of three targeted chemo-immuno injections tomorrow, one every Friday. CAR-T will probably start late July with 3 weeks of harvesting my own cells and growing genetically modified killer cancer cells, transplanted back into my own body around mid-August. 2 weeks in hospital for close observation then 2 months of "house arrest" with 24/7 caregiver watch and no driving. 

A.L.L. B-lymphoblastic leukemia/lymphoma - 92.2% small to medium sized, atypical B-lymphoblasts

Not a lot of good WBC going on, percentage-wise. 

0.1% Polyclonal B-cells 

2.4% Small T-cells 

0.2% Natural Killer (NK) cells 

0.1% Mature Monocytes 

0.1% Immature Monocytes 

4.2% Neutrophils 

0.2% Eosinophils 

0.1% Basophils 

<0.1% Plasma cells

He hears my cries. 

Philippians 4:6-9

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.

Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy—meditate on these things. The things which you learned and received and heard and saw in me, these do, and the God of peace will be with you.

May you know His grace today.

Plan "M" - Maranatha

June 16: No words

 Last week, my WBC count was 23 (normal 4-11). Today, it's 71. 

Here I am, Lord. 

June 9: The art of maybe

Today. Not tomorrow. Today was an ortho doc in the morning to plan/schedule on getting a 3cm chunk of loose cartilage removed next week arthroscopically. 2-3 days of crutches and 3-4 weeks recovery. I now weigh recovery times and don't buy lifetime warranties anymore. For me, a knee replacement would be like buying a lifetime warranty - 6-12 months of recovery for 15+ yrs of use. If I reach Aug 16, 2025, it'll be 2 years since my original A.L.L. diagnosis.

Today, the afternoon was the oncologist. Feel good. Hmmm. WBC count is 23, should be 9-11. Keep your head in today, Gary. Don't succumb to the what-if's. Another test next week to determine if I'm trending or ???.

So, enjoy the day before you. Tomorrow, His mercies are new every day. Hug your spouse and kids and tell them you love them.

Today, not tomorrow

Matthew 6: 25-27, 33-34

Therefore (because you can't serve both God and money) I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life?

But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

The future is worry, the land of "what if this? what if that?"

Today is resting in God. I am His; He is with me. 

This new phase of challenge is a new kind of challenge. When going through chemo or bone marrow transplant or immunotherapy, all those had "clear" beginnings and ends. The results weren't know, but in the day to day moments, the focus was on the battle at hand. 

Yesterday, I met with Dr. Pineiro. I have no symptoms. I feel good. A simple CBC shows my RBC's, platelets and WBC's are all at good levels. I enjoyed the day. There is no treatment, no battle of the day. There is simply living in the day, day by day, and in a month, if no symptoms crop up before then, another simple blood test. 

Today, I can enjoy the day before me or I can give in to the "what if's." By His grace and strength, I will not worry about tomorrow. I will enjoy this day His given me.

In this paradigm, making future plans challenges me to hold them loosely. I would like to take a trip to Cinci in August. I plan, avoid the temptations of the what if's mental gymnastics, and know that His good and perfect plan will be good and perfect. 

If you look at the tapestry of your's and my lives from the backside, it can be disconcerting. A tangle of knots, crossed threads, no real pattern. Turn it over, and God can show you and me the beauty of all He's done in our enduring, wrestling, walking and how He are wove it all into a unique and beautiful tapestry of His doing. 

May His mercy and grace be yours in full measure today. May you know His peace that surpasses all understanding; the peace of faith in Jesus Christ, the Messiah. 

Apr 23: Ride the Roller Coaster of A.L.L.

After a substantial discussion with my oncologist Tue afternoon, I've decided to put CAR-T on hold. We're going to monitor and see if and how fast the blasts increase. It is possible my body will mount a defense. There are a couple of other less intense options other than CAR-T, also that might be tried. 

Just not ready for a 2 week hospital stay and 60 days of 24/7 "house arrest," having to stay within 50 miles of the hospital and have a 24/7 caregiver. 

Whatever the medical level of involvement, from the start my hope has been in God and his good intention, whether through medical means or in spite of it. Waiting and seeing what happens now makes that a little more real for me. 

Many are the afflictions of the righteous, but the LORD delivers him out of them all.

Psalm 34:19 

I am righteous only through Jesus. He will deliver me, whether here on earth, or ultimately, eternally. 

Apr 18: Don't be your own Doc

 

Well....

Never be your own doctor or lawyer. I just heard from my oncologist. I misread the results and didn't actually have the more sensitive genetic test results. I still have some leukemia lurking around, 53 cells vs the 845K I had when I was first diagnosed Aug 2023. 

Bottom line, still in a battle, still in a fight. 

CAR-T is my next likely option where they use my own healthy cells to grow them and then target the bad ones. 

The Lord is my refuge and strength; a very present help in time of trouble.