Feb 29: +13 Have you leapt today?

No leaping here, but a day closer to the upturn of my new, little soldiers of the marrow. 

 The Exit™ was especially challenging this morning at 0200. I tapped out and got Tramadol and an ice pack for The Exit™. I can, but also can't imagine being martyred at the stake, if that makes sense.  

Waiting patiently/impatiently for today's WBC numbers. 

Oh Lord God in heaven, 

Be Thou my soul’s Shelter, be Thou my strong Tow’r, O raise Thou me heav’nward, great Pow’r of my pow’r.  

You are our refuge, our shelter, our very present help in time of trouble. Whom shall we fear? Why should we fear? Only you are to be revered. Jesus, help our unbelief. Draw us to yourself by the power of Your Holy Spirit.

God be praised, Amen

Feb 28: +12 Wait, day what?

 The agony of slow and steady waiting for the next day, then the next day. 

The Exit™ continues to be a painful challenge. Frequent applications of 5% Lidocaine and something called ProctoFoam (don't ask) is my best strategy so far. 

+15 will be Friday, but I expect that to be the first day of measurable increase. Probably will take another 1-2+ days to get to an acceptable level to leave. My hope is Monday, but sooner would be wunderbar. 

Peace and joy with love be yours in full measure today, 

Gary

Feb 26: +10 The GI

The GI Tract, gastro-intestinal. From your lips to your "exit."

It's lined with rapidly dividing cells and constantly being repaired/replaced. Chemo did a major number on that back -3 thru +3 days. Now the fallout. I thought I might have dodged the mouth sores, but no. I have a sore developing on the back of my throat. My Exit is a source of many challenging pains. In between are some rumblings. They have lots of strategies to cope - Pepcid for the stomach, special mouth rinses to try and protect the mouth and upper throat lining, but they come. 

Part of what makes this whole is not only cells able to divide and be replaced, but worker WBCs that work to repair it all. 

So that's where I'm at. Hopefully, around day 15, things will start to kick in and the WBC count will start to climb. Right now, I'm at <0.1 for WBC's. Normal is 4.5-10k for adults. 

No great corollary insights today. Closest I got is we all gotta work together to make it all work in our families, neighborhoods, communities, etc. No one person can do it all. 

I Corinthians 12:21-26 The eye cannot say to the hand, “I don’t need you!” And the head cannot say to the feet, “I don’t need you!” On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, while our presentable parts need no special treatment. But God has put the body together, giving greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.

May grace and mercy be yours in full measure today.

Gary

PS. Another surprise benefit. it's easy to pluck your eyebrows when you can just pull them out by the handfuls. 

Feb 25: +9 IV's and the long, flat valley

 The long flat valley of no WBCs. But, in the distance, maybe in 6-12 days, the promise and hope of a beautiful peak with new, healthy WBCs. 

IV's, I gots 'em. 

This was when I was getting a platelet infusion yesterday. 

No deep thoughts today. I'll leave you with this. 

Jude 24, 25

Now to him who is able to keep you from stumbling and 

to present you blameless before the presence of 

his glory with great joy, 

to the only God, our Savior, 

through Jesus Christ our Lord, 

be glory, majesty, dominion, and authority, before all time and now and forever. Amen.

PS - head shave day as the hair was coming out in clumps. Back to the Telly Savalas look. 

Feb 24: +8 days and pills

 It's been a rough couple of days. I do feel better this morning, so hopefully a better day. The fatigue yesterday was horrible. And, it seems I was fighting some infeciton. Fever, horrible chills. 

This process I think is powered by pills. And, I used to not have a problem taking pills, that is until now. I used to take two or three pills at a time without any qualms. Now I have started balking even with just one pill. I think I figured out and retraining myself to take pills again with the aid of a water bottle. You may use that trick already - reforms the shape of your mouth so to help the pill go down easier when you drink from a water bottle with a narrow opening.

One day's worth of pills. At home, I take 2 pills/day. 

  

  

+8 days on the transplant. I'm guessing there will be some ups and downs until the WBC starts to trend up again around +15. 

Metaphorically, I think some people live lives with lots of "pills." They could be actually pills, activities, distractions, etc. Anything to not face the real issue of life. When I believed, put my faith and hope in Jesus, I got rid of my "pills," because He cured me with His touch. 

Blessings on your day,

Feb 19: +3 Cytoxan

 This is not a fun recreational drug. 

Cytoxan

2 days of this is what leads to mouth/GI sores, nausea, diarrhea, and fatigue in almost all cases fro 10-14 days until WBC count starts to come back up. The treatment team does all they can to mitigate those symptoms. 

Go Bone Marrow!

Feb 18: Untethered!

 Untethered! 

Since I don't have any infusions or transfusions scheduled until Monday, they unhooked the IV from my PICC yesterday. I'm "untethered" from the IV pole. I still hesitate when I get up to move about, not wanting to jerk the tethered IV line to my PICC. The "ghost" continues to follow me some. 

In a similar fashion, Christians sometimes allow themselves to be tethered to their old self, attempting to follow a set of rules that they believe makes them right with God. But Jesus fulfilled the "Law" completely and imparts His right standing with God the Father to us that believe and trust in what Jesus did for those He loves. We obey because we love Him, who first loved us. 

Galatians 5:1 tells us Christ has truly set us free. Now make sure that you stay free, and don’t get tied up again in slavery to the law.

What are Christian Beliefs?

I hope your day is blessed with the peace of Christ that comes from being in Christ, the freedom of Christ. 

Feb 16: Happy New Birthday

 Here on the transplant floor, they put up a small poster on your door when you receive your stem-cells that's titled, "Happy New Birthday."

For me, that means I've experienced 3 birthdays - my newborn birth, my spritual birth in Jesus, and now my transplant birth. I am getting an "O" negative donor transplant, so my new marrow will ultimately produce O+ blood and I'll be "reborn" from A+ blood. 

In similar fashion, God "transplanted" a spiritual heart of flesh in me on my spiritual rebirth, replacing my spiritual heart of stone. “I will remove from them their heart of stone and give them a heart of flesh.” Ezekiel 11:19. No spiritual patch, but a full transplant. 

Do I have moments of doubt & despair? Yes, but ultimately, I know and have faith He is ever with me and has sealed me with His Holy Spirit for the day of redemption. 

In him you also, when you heard the word of truth, the gospel of your salvation, and believed in him, were sealed with the promised Holy Spirit, who is the guarantee of our inheritance until we acquire possession of it, to the praise of his glory. Ephesians 1:13-14

So now, I guess I have 3 birthdays!

My nurse this morning drew out this graph to show me the white blood cell count curve/recovery. Zero is today. +3, +5, 15-21 are the post-transplant days. Things will get rough around +5 until the curve starts to trend upward. Without white blood cells, things don't get repaired as well, thus the GI tract sores, etc. 

I will also most likely get RBCs and platelets a time or 2 during the "valley" of that curve, as those cells also have to be replaced by my new marrow. WBCs need to be produced by my new marrow, though. 

May your Friday be a blessed day! May you be blessed with the eternal 

PS, the staff just gave me this gift for my "birthday."

Feb 13: 2 Days of Melphalan - "What do you want me to do for you?"

 Could I ask a favor? Could you comment how you are notified when I post something new and include your initials in the comment? Thanks. 

Here we go. 

Melphalan. 2nd chemo added to the mix today for today and tomorrow. The "nuclear" chemo. 

Big typical side-effects. Fatigue, hair loss, mucosal sores and the big D. They will have me eating ice almost non-stop for 30 min during and 30 min post infusion. This constricts the blood vessels in my mouth and esophagus, helping reduce the amount of Melphalan getting to the mucus membrane, and reducing it's effects on it. Sores can develop further down the GI tract wherever mucus membranes are present. They've had me on Prilosec for a few days now to reduce acid levels in the stomach. The sores don't really start to heal until my white blood cell count starts to recover in 2-3 weeks post-transplant (this Friday). 

But God... 

Whatever I face/endure in this, may He be glorified in my response. He is not bound by statistics or time. As Jesus asked the blind man, "What do you want me to do for you?" His response, "I want to see." 
What am I asking Jesus? Both for the reality of today and for eternity. Lord, I ask that you take this cup from me, if it be Your will. No sores, no fatigue, no D. I'm 100% ok losing my hair. From an eternal perspective, that He might be glorified in my words and deeds during this time of trial. 

I'm enjoying what I suspect will be my last cup of Java for a couple of weeks. One of those flavors that went south with previous chemo. One of my 4 chemo rounds previously, my taste went to only really tasting sweet and bitter. Creamy foods with mayo and sr. cream were "nice." I ate more sweet foods than I normally do. 

Here's 2 shots of my room. Whatever T. Boone Pickens motivation was for his donation for this hospital, I'm grateful. Nice wood accent, in-room fridge, room to spread out, a workspace, love seat that makes into a bed, private bath and recliner. I brought a digital frame with pics of my favorite peeps and some other memories of woodworking projects and kayaking trips. And the end of the hall in a cubby for the staff elevator is a nice recumbent bike. I got in 12 min today. And have got 1-2 sessions in since I discovered it on Sat. Trying to "bank" some stamina. 

May you be blessed today with grace, mercy, joy, peace, and most of all, the love of Jesus. 

Feb 11: 553 steps, give or take

 553 steps is roughly 2 laps around the floor. 19 more trips and I can make my 10,000 steps for the day, LOL. 

Day 1 of Fludaranine wasn't bad at all - no side effects. Day 2 or 3 will begin the days of clobbering, with reinforcements from Melphalan on Tue - Thu, days 3-5, from what I understand.

One of my favorite hymns, It is based on a Middle Irish poem by Dallán Forgaill, an early Christian Irish poet born in 530AD. 

Be Thou My Vision. Most modern version don't include verse 3, which I think is a shame. 

1 Be Thou my Vision, O Lord of my heart;be all else but naught to me, save that Thou art; be Thou my best thought in the day and the night, both waking and sleeping, Thy presence my light.

2 Be Thou my Wisdom, be Thou my true Word; be Thou ever with me and I with Thee, Lord; be Thou my great Father, and I Thy true son, be Thou in me dwelling, and I with Thee one. 

3 Be Thou my Breastplate, my Sword for the fight; be Thou my whole Armor, be Thou my true Might; be Thou my soul’s Shelter, be Thou my strong Tow’r, O raise Thou me heav’nward, great Pow’r of my pow’r.

4 Riches I heed not, nor man's empty praise, be Thou mine inheritance, now and always; be Thou and Thou only the first in my heart, O High King of heaven, my Treasure Thou art.

5 High King of heaven, Thou heaven's bright Sun, O grant me its joys, after vict'ry is won; Great Heart of my own heart, whatever befall, still be Thou my Vision, O Ruler of all.

Blessings of mercy, grace and love be yours in full measure today.

Gary

Lake Ray Hubbard Sunrise

Feb 10: If it's Saturday, it must be Fludarabine

Good things

I got a PICC line yesterday in my left bicep. They thought they might have to install a central line in my chest, rather than a PICC in my arm, but the PICC ladies were successful.

My room is HEPA filtered and a positive air room which pushes all the air out through the HEPA filter in the door.

The first step in my SBMT starts today with Fludarabine chemo for 5 days. It has some pretty grave potential side-effects like half the drugs advertised on TV. Fortunately, I don't plan to get pregnant and the really bad side-effects are rare. Expected side-effects are nausea, mouth/GI sores, hair loss and fatigue.

They are very much about preventing infection on this floor. Wipedowns daily of the room, daily showering with Hibiclens, masking among other prevention. Factoid - A CDC study says 1 in 20 hospital stays result in an infection.

Blessings to you all,

Gary

Feb 9: D-Day

 Maybe just a little of how I feel today, but nothing like what those brave souls felt. 

Checking in at around 1p. 

Feb 6: Statistics & God

The success rate of allogeneic stem cell transplantation (allo-SCT) for acute lymphoblastic leukemia (A.L.L.) has significantly improved over the years. Let’s delve into the data:

1. Historical Trends:

   • In the 1980s, the nonrelapse mortality (NRM) at 1 year after transplantation was 29.7%.
   • In the 1990s, it decreased to 24.4%.
   • From 2000 through 2009, it further improved to 14.8%.
   • And from 2010 through 2016, it reached 12.2%1.

2. Recent Advances:

   • The most substantial improvement occurred around the year 2000.
   • In a matched-pairs analysis, the NRM at 1 year was 9.5% from 2013 through 20161.

3. Overall Survival:

• After a median follow-up of 9 years, the 10-year overall survival rates for various conditions were as follows:
• Acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL), and lymphoma: 84%

(Gary's comment: As best I can tell, for 60+ year olds, the percentages go down by at least half.)

Now, one thing I've said that may sound strange to you is that God is not bound by statistics or time. God's very nature is omniscient (all-knowing) and omnipotent (all-powerful), and infinite and timeless. So how and when He chooses to act is not bound by statistics or time. 

He is the giver of all good things. Job 1:21 says, The Lord gave, and the Lord has taken away; blessed be the name of the Lord.” 

We all have a finite time here on this earth. Why does God allow some to suffer cancer, stroke, pain in death? I don't know in specific cases, but I do know from Romans 8 that for those who love God all things work together for good, for those who are called according to his purpose. God has not revealed His timeline for me. Statistics in that sense, are irrelevant. God determines my fate and timeline, not statistics. 

I do believe and have faith that eternally I will enjoy life in heaven in His presence when my time here comes to an end, whether that's soon or not so soon. 

Paul says in 2 Corinthians 4 that we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

So, to God be the glory, whether it's a day or 30 years. As Paul said, "For to me, to live is Christ and to die is gain. If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know! I am torn between the two: I desire to depart and be with Christ, which is better by far; but it is more necessary for you that I remain in the body.

Blessings, grace, mercy and most of all, love to you all,

Gary

Feb 4: A New Season of SBMT

 SBMT - Stem Cell Bone Marrow Transplant

Thursday the 1st was my BMT Class that filled in a LOT of detail, and I mean a LOT. The 2 hr class lasted three and a half hours. I am having an allogenic Matched Unrelated Donor (MUD) transplant. 

In a nutshell, the timeline is:

1. Feb 9. Bone Marrow clearing chemo for 5 days (T minus 5 days)
2. A rest day for me when the donor's stem cells will be collected from his donation of blood. It's not quite that simple, as the donor will be doing things prior to that day to maximize the stem cells. 
3. Feb 16. Transfusion day when I receive the donor's blood stem cells as a transfusion. (Day 0). The donor's stem cells migrate to the new vacancy in my bone marrow and setup shop.
4. A short stint of chemo designed to suppress the initial bone marrow transplant reaction to my body, as the donor's stem cells now bone marrow see my body as the "graft" in Graft vs Host Disease (GVHD). 
5. High level monitoring for donor rejection/management. (Day 1- 30)
6. Tapering off monitoring for GVHD (Day 31-100)
7. Long term monitoring and maintenance. 

It's been a load of info to take in and learn, understand and process.

I am asking God for His mercy and grace in this next season, that it might go well, that I would get to complete remission. Most of all, I pray that He would give me the strength to endure the tough days and show grace and mercy to those around me. 

The Lord is my shepherd; I shall not want.

He makes me lie down in green pastures. He leads me beside still waters.

He restores my soul.

He leads me in paths of righteousness for his name's sake.

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.

Blessings to you in your journey and challenges of life this week.