Nov 30: Transplant & Tidbits

Tidbits. 

 I knew I looked odd with the loss of hair, but realized last night, I have no eyelashes and minimal eyebrows not. Weird. No eyelashes means more likely to get "things" in my eyes. They do have a function. There are other places where hair has real function besides style. I'll leave it at that. 

 My oral chemo seems to continue to mute/alter my taste, which finding something truly tasty is a challenge.

Hemorrhoids. I feel for anyone that suffers from these. Between my prostate/urination issue and chemo effects, Johnny Cash's Ring of Fire is a song that comes to mind often.   

Transplant

I went through a day long battery of tests and evals on Tue in conjunction with moving forward on the transplant front. Pulmonary, urology, echocardiogram, chest and head x-rays, 17 vials of blood for a blood workup, yes 17 vials! 

This culminated in a session with the transplant doctor sharing I have 3 donors that are a 8/8 match from the donor database and can proceed with the transplant once other things happen. There is another pre-transplant infusion treatment to prep the body for the transplant. I also have a bodily plumbing/prostate issue I need to get sorted out, hopefully in the next couple of weeks. 

God

A good friend shared these references. Perhaps they'll encourage you in your challenges today. 

Psalm 120:1    Psalm 34:18    Psalm 121:1-2    Psalm 27:1    Psalm 29:11    Psalm 46:1

Isaiah 43:2    Isaiah 41:10    Isaiah 40:31    Jeremiah 32:27

Nov 16: Wowsers - Transplants aren't for sissies

 Transplants aren't for sissies, even blood stem cell/bone marrow transplants. 

• 4 weeks in the hospital
• 3x week visits afterwards for 3+ months

Plus all the pre-prep testing, which is extensive. 

You have to meet with a social worker just so they can make sure you can handle it mentally, emotionally, and have the support systems needed. 

On another front...

I'm looking forward to a big, 3 1/2 day Thanksgiving shindig with my family. 

And on another front...

Mind blowing facts as I transition to Medicare and all the "Parts"

 My oral chemo I take at home - $3,000/mo for a 30 day supply. Medicare may or may not cover it under Part B as my treatment started before Medicare kicks in Dec 1. Even with a good Part D supplemental, I would be out around $3500/year as you pay the first month, then a reduced second month before full coverage kicks in month 3 and then reboot at the beginning of every year.  Bristol Meyer won't help through their assistance program on the part not covered, as I will be on Medicare and they don't help if you're on Medicare. 

On the plus side, I had a nice lunch with a couple of guys from church. 

Psalms 147:5 - Great is our Lord, and of great power: his understanding is infinite.

Matthew 19:26 - But Jesus beheld them, and said unto them, With men this is impossible; but with God all things are possible.

Revelation 19:6  Then I heard something like the voice of a great multitude and like the sound of many waters and like the sound of mighty peals of thunder, saying, "Hallelujah! For the Lord our God, the Almighty, reigns.

Nov 12: Milestone after waiting 2 days

 I was hoping to get out Friday. I got out today at noon. Better late than never. 

Ringing the bell to signify "end of chemo round!"

Methotrexate was kicking my butt. I was still retaining it and couldn't get down to the "safe" level to leave. You have to ask lots and lots of questions to get to the reasoning behind some of the decisions. 0.05 is the "safe level." Not sure exactly what measure of unit is, but I was 0.09 Friday and still at 0.06 late yesterday after waiting most of the afternoon for the latest results. Talk about a patience-building experience. Cytarabine was my other chemo butt-kicking Thurs & Fri, along with an intrathecal dose of Methotrexate on Thursday. I call cytarabine, "cy bean of terror." Oh, and a unit of blood yesterday to get the O2 flowing a little better. Now, to get the taste buds and appetite back in shape for Thanksgiving. 

So, this was round 4, a milestone. I'm not real clear what's next on the horizon, other than waiting for the transplant people to let me know if we have a match for a stem-cell to bone marrow transplant. One of the residents let slip there might be another "round of 4" after this "round of 4." I guess I'll find out this week. 

I got to practice piano keyboard a bunch thanks again to the BUMC music therapy group. It's a lifesaver; I mean you can only watch so much Judge Judy. 

I still have my port and so, I guess the calculus will begin whether to maintain it for big round 2x4, or pull it if it's not going to be used in the next couple of months. 

Incredibly thankful and grateful for all who have cared and supported us, for the prayers upon prayers. I don't know how people go through life without a clear hope in the eternal triune God the Father, the Son & the Holy Spirit. With all the evidence of God, it seems like it would take more faith in "not believing" than in believing. 

May your week and Thanksgiving be filled with faith, hope, thankfulness, gratitude, and most of all, love. 

G

Nov 8: post tenebras lux

 post tenebras lux -  after the dark, light!

This is a Latin and refers to the Dark Ages and how after the Dark Ages, there was light there was renewed hope. But also there was many faithful men and women that brought the knowledge through the Dark Ages many priests and loves who preserve literature and writings.

So my Dark Age was Tuesday where I felt like I was getting a lot of bad news, but it all worked out and God, our Heavenly Father, gave me the renewed hope and His mercies are new everyday, so.... today is much better, things are going better despite getting chemo today. I have the best entree that they have on the hospital menu today, chicken enchiladas with red sauce, charro beans and seasoned corn. 

And, the music therapy guy brought me a keyboard to practice on for my time here. 

God truly is my refuge, my fortress, my ever present help in time of trouble. Blessings to you all today -- may you feel His love and know the love of Jesus.

Nov 7: Not so quick, bucko.

 Just when you think you've got the routines down and think you know how it's all going to go, curve balls like the Rangers threw the Diamonbacks. 

I don't have any PICC grade veins left to tap in my arms. This probably means a port or a catheter in my upper chest. A day lost. Suppose to find out this morning.

This round of chemo parallels my second round but found out yesterday That it doesn't. to up the levels and add another so, sounds like pretty intense around coming. Also get to do another intrathecal lumbar puncture this round. 

With the delays, that all translates to probably not getting out on Friday, but a weekend or Monday exit.

Struggling to stay optimistic and positive. 

Nov 4: Almost normal

Nostalgia - Back in the 60's, Nov 1st was the official watch party for the appearance of the Sears Christmas Catalog from the postman and that amazing 4-color section of toys that became dog-eared and hope upon hope, might show up on Christmas morning. 

Almost normal

Blood counts almost normal, but still on the anemic side,

Taste almost normal,

Cotton-mouth almost gone, but thirst never seems to be fully quenched, 

Gastrointestinal almost normal, but not

Stamina almost normal. 

I'm hoping a good percentage is still residual from last round's IV chemo, and not the daily oral chemo, SpryCel, I'm taking now. 

Almost normal is better than dead, but it's not normal, and it's wearisome. 

Grace and mercy be upon you all. Enjoy the extra hour of sleep tonight. 

 

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.