Oct 30: Hair and Taste

 Disclaimer: My chemo experiences may not have any similarity to your friend's chemo experiences so, there you go. 

Hair. I've discovered some things about hair since going through chemo. 

• It kept my head warm in the winter, cooler in the summer. 
• In certain body locations, it has other beneficial effects which I won't go into detail on. 
• I am now a hat/cap fiend. 
• I'm pretty sure all hair stopped growing for the most part, but some areas were more prone to fall out than other areas. I was pulling handfuls of hair from my scalp the 3rd week. Hair on my arms seems to be hanging in there (pun intended.) My legs are a mixed bag. I'm thinking wearing pants has caused all the hair on the tops of my thighs and the outside of my calves to disappear, but hair on my arms and the inside of my calves is standing firm. None of the hair on my face or head (shaved) shows any signs of returning. 
• I still think I look like an escaped convict without a cap or hair. 

Taste

• I am fortunate that I haven't gotten any mouth ulcers. I know for some chemos, that's a real challenge. 
• Mainly mine is cotton mouth and just off taste. As the day goes on, between meals or snacks, I find myself looking for something to beat back the cotton mouth/paste mouth taste/feel.
• Sweet foods seem more normal. I find myself drinking diluted juices, but probably not great for my teeth. 
• Some savory foods are good, and some the bitter comes through in weird ways. I used to love olives; now, not so much 
• Creamy foods also seem more normal, from milk to spinach dip. My preferred sandwich condiment is now mayo, not mustard. 

My parting thought for today. 

Matthew 6
25“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? 26 Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? 27 And which of you by being anxious can add a single hour to his span of life? 28 And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, 29 yet I tell you, even Solomon in all his glory was not arrayed like one of these. 30 But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O you of little faith? 31 Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For those outside the faith seek after all these things, and your heavenly Father knows that you need them all. 33 But seek first the kingdom of God and his righteousness, and all these things will be added to you.

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

Oct 24: Mish-mash

Visit to doc today: Blood counts were good. Everything "ok."

Good numbers, but still fighting some fatigue and cotton mouth/blah taste. 

 What is remission? 

In times past, remission was classified as <3% aberrant cells. They can now measure 1 in a million aberrant cells, so the standard of what is remission is higher, but then by that measure, you're likelihood of staying in remission is better if your closer to 1 in a million vs just < 3%. 

If I'm closer to 1/1million, then perhaps stem cell/bone marrow transplantation won't be the best option. 

It's an evolving thing. 

Thankfully, God is not evolving. He is the same yesterday, today and forever. He is my refugee and my fortress, my strong salvation. 

Blessings,

Oct 19: Tough morning; good afternoon and cool stuff

Cool stuff.

BUMC (Baylor University Medical Center), Downtown Dallas is where I'm at. They have music therapists that go around and play music for people. My guy came by with the guitar and played a couple of songs Ring of Fire/Johnny Cash and Amazing Grace (his #1 requested). He asked me about my music background and talked a little bit and then he said,"Hey, would you like to have a keyboard to practice on while you're here at the hospital?" And I said sure that would be awesome. Here's what he brought by. More practice in at the hospital than I do at home.

This morning was rough. Let's just say I had some major lower blockage that took some major solutions. All better now. That, and a shower. 

Afternoon has been great. 

Word is tomorrow, chemo finishes, "get" to have another intrathecal/lower lumbar tap, maybe a blood transfusion because my RBC's are low, pull my PICC, then home late Friday. 

Oct 18: Round 3 and patience

 Round 3 of chemo started Tue at noon. Dodged the nausea monster so far; started taking anti-nausea meds as soon as started the chemo. 

Chemo is basically every 12 hours plus an oral. 

Patience. 

Doc last week says. you'll be in the hospital 4-5 days. Great! (Note to self - doc is overly optimistic with scheduling/dependencies of treatments/procedures)

MON

Arrive Monday at 2p, because bed won't be ready before then. 

PICC gets put in around 8p. Nothing else happens before PICC installed.

TUE

Doc orders go in for chemo; pharmacy formulates, chemo started at noon. In my view, 4 hours wasted. 

WED

Learn I need an intra-thecal (lumbar tap.) That can't happen until chemo is finished so that means tap is earliest on Friday afternoon; maybe Saturday except they don't do those on Saturday so that would push me to Monday. That means probably overnight stay in hospital - twiddling my thumbs and eating hospital food for the weekend. Not feeling very happy about that. Patience and mercy for the frontline people who aren't really responsible for this. 

UPDATE 10:23

Oncology team came in and said lumbar puncture can happen Friday and get to go home Friday! Yeah!

Seek the LORD and his strength; seek his presence continually!

1 Chronicles 16:11

Oct 15: This side of heaven

 

I was maximizing my time outdoors tonight before I go back in for round 3 tomorrow. Sitting in front of a fire on a cool crisp fall night is really nice; almost a slice of heaven. The flames of the fire are mesmerizing, and I was daydreaming about when I rode motorcycles and the sensation of flying when riding, especially on twisty roads. My daydreaming led me to plotting, maybe I could get a bike for a short time, re-live the "days," etc., especially if, you know, my days are numbered. 

I almost felt a tap on the shoulder, and a voice, "Your days are numbered; I hold that number."

and

I give you some slices of heaven, but you're not even close to heaven on that side. Heaven is a place of great joy, totally devoid of sin and its brokenness. No tears, no pain, transformed bodies without sin, in the presence of Jesus, God the Son. Beauty and brilliance in the presence of God that can't even be imagined. You are a stranger and alien on earth; your citizenship is in heaven. You're not home yet.

Oct 13: Almost routine?

 Feels crazy to say it, but it almost feels routine going back into the hospital this coming Monday for round 3 of chemo. 

2 more days of normal, then....KaBam Monday. 

Thankful for chemo that fights my leukemia and all those along the way that developed the protocols and treatments. 

Thankful for all of you that have been faithful to pray and continue to pray. Thank you. Thank you.

Oct 10: Big jump in numbers and transplant update

 My numbers took a big jump to near normal with my blood draw Mon. Platelets went from a 9 on Fri to 152 on Monday. Just amazed. 

Talk with my transplant coordinator today. They've identified a potential match from the donor database. Further match testing going on this week; results likely next week. If they are ultimately a qualified match, they'll look for a backup donor before proceeding. In the meantime, I still have 2 more rounds of chemo to complete. 

Taste is almost back to normal - yea!  

Thanks be to God. 
Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.  James 1:17

Oct 8: More blood & platelets

 Well, my counts still were very low Fri, so I got to hang out at BUMC until 7:40p Friday night for more transfusion fun. That frustration is in no way directed at the amazing staff that has cared for me there. 

I do feel much better, but I guess numbers don't lie. 

This morning was glorious and such a blessing from God. Crisp fall air, had a small fire in the chimenea on the back porch, mostly enjoying coffee (taste is still off), listening to all kinds of various birds declare the glory of God's creation. So much to be thankful for. 

I hope your day and week are a blessed one. Be strong & courageous (Joshua 1) 

Oct 4: Transfusions

 For the first time in my life, I've received transfusions. My counts were so low, I got 1 unit of blood yesterday and 1 unit of blood today, and 1 unit of platelets. 

I have mixed feelings about receiving blood transfusions, given some of what's happened around Covid. Hoping for the best. 

RBC, WBC, and platelets were all really low and my counts were not coming up very fast. 

Also having an allergic reaction to one of the drugs; they're not sure exactly, so they took me off the top of the list one. My head around my eyes swelled up with what looked like hives. My right eye is more squinty than my left. Hopefully it'll subside over the next 12 hours.