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Friday, October 31, 2014

Milestone: One Year Since Second Bone Marrow Transplant

For those of you who follow this blog, detailing my journey of survival and hope, you've waited a loooooong time for an update! My apologies! It has been a year of whirlwind ups and downs, sometimes a step forward and two steps back. Isn't it supposed to be the other way around? 

Over several months I've been in and out of the ER most of the time for severe stomach upset, both vomiting and diarrhea, which caused a dangerous drop in blood pressure and dehydration. A couple times it was for a pain crisis and a couple times I was hospitalized for a fever that crossed the threshold of acceptability. 

The ups have been many as well. I've enjoyed getting to know new friends that have become very special to me. I've had the pleasure of getting to know Kim Newton who has generously given her time and energy to drive me so many times to City of Hope which lies 2 hours south. I can only drive 45 minutes at the most so this help has been so appreciated and lets Mike work instead of having to take off of work. Kim introduced me to Roxanne's A Wish and a Dream Quilt Shop and to the world of quilting! I made my first couple of quilts, a wall-hanging and a quilt top, took a class and am almost finished with that quilt top, another wall hanging which is a gift I have yet to finish, oh and many projects in my queue, which I hear is a common problem for quilters! I started with a bang, then got overwhelmed with fatigue and stomach problems and find myself resting and getting inspired, but unable to get it done myself! 

I've also had a great time getting to know various women of Calvary Chapel. I risk leaving some out, but have to mention new friends like Linda Laskin, Carolyn Wageneck, Mary Carty, and so many more who have given their love, prayers, gifts and friendship over the past year. There are some ladies who've given me all that who I don't even know! That's just the kind of community we have here in Santa Barbara at Calvary Chapel. I'm so thankful that even though this whole year I've been unable to attend church on Sunday (my family goes without me so I can stay out if large crowds), not only have I not been forgotten, I've made new friends who've reached out to me and whose fellowship keep me going! A month ago or so, Mike and I started going to a mid-week Life Group. It's been a blessing to feel connected to the church body again! And now that my 1-year has passed I can start to attend Sunday mornings again. Thankful to have the option to watch the service via live stream, it will be nice to worship in that space.

I'm on so many medications and they've really taken a toll on me. I don't look or feel in a way that I recognize. But they keep my immune system at bay (to prevent severe GVHD), my blood pressure down, my thyroid in check, they attempt to normalize my hormones (not there yet!), give me energy, reduce my stomach acid, increase my vitamin D, connect my nervous system, reduce pain and move my bowels! Ha, too much information! The thing I deal with most now is gastritis, or inflammation of the stomach lining. 

I recently had an endoscopy and a biopsy of four places in the gastrointestinal tract to look for GVHD. The good news is they found no evidence of it or of any infections. They've just determined my problems gastritis. Now I need to figure out what to do about that. Is there a certain diet that could improve it? Or is it medication side effects that won't improve until I can get off of them? I don't know, but I covet your prayer for a miraculous healing there. Add to that my second problem which is also inflammation, but all over and most notably in my feet, ankles and calves. There is no known cause as we've sought all possibilities through a variety of specialists. Insurance has not been covering things as well as they used to do and we are tapped out. So please pray for healing and that God would provide for my medical needs as He always has.

Two things I started that seem to help is gentle exercising at AC4 Fitness, working with a woman who is showing me what and how to do it without overdoing it so I don't have too many setbacks. The other thing is acupuncture! I found an excellent place called Downtown Community Acupuncture which offers treatments on a sliding scale from $20-45. It's so convenient with their online appointment setting and paractitioners available all day, everyday. With my level of problems, ideally I'd be able to go 3 times a week, but am stretching to afford 2 per week. I'll take it! I highly recommend this group if you have pain or any other problem, unspecified or not,

Yesterday was my one year anniversary which some call a new birthday, but since it is my son's 13th birthday as well, I call it my anniversary. He didn't seem to keen on sharing his birthday with me, not understanding what was meant by it, lol! Though as he headed off for school yesterday and I told him "Happy Birthday!" he yelled over his shoulder, "Happy Birthday!" twice to make sure I heard him. Too sweet!  

Finally, thank you to those who have shopped through my Amazon affiliate link in the sidebar on the right. Every little bit helps offset our costs and we appreciate your help! If you haven't already done so, please bookmark this link to return to it easily when you choose to shop at Amazon. Right click to save his link: Shop Amazon Now.

Tuesday, December 17, 2013

Day 56: Female?

Today Krista and I drove down to the City of Hope for a checkup. The labs show that the previous concern for her liver is not likely to be GVHD, since the results were better this time than last. Blood counts are good and the stomach pains she experiences from time to time don't appear to be anything serious. They're reducing her prednisone dose but not much else will change. 

On another note, Krista received a card today from the stem cell donor!  It was a very sweet letter (addressed "Dear little fighter heart") from a 24 year old German girl, just leaving university to "find her place in the world". We were so surprised because we had thought the donor was a young male. So now Krista has a new blood sister! The communications between donor and recipient are regulated so we don't know her name yet. Eventually when it is allowed (in about 2 years) we would love to meet her.

So much happened today, and we are so grateful to everyone for their kindness and generisity. My work held a bake sale to raise money for ongoing medical expenses. We couldn't be there but it looked like a very good turnout. Also, special thanks to Kim and Maya for their friendship and extra dose of love shown to Krista today. The Lord has been so good to us. 

Shout for joy to the Lord, all the earth. 
Worship the Lord with gladness;
come before Him with joyful songs. 
Know that the Lord is God.
It is He who made us, and we are His;
we are His people, the sheep of His pasture. 
Enter His gates with thanksgiving
and His courts with praise;
give thanks to Him and praise His name. 
For the Lord is good and His love endures forever;
His faithfulness continues through all generations. 
(Psalm 100)

Saturday, December 14, 2013

Day 53: Two Days

I was too tired last night to blog, so this is a two day summary.

Krista's visit to the City of Hope went well, though there were some adjustments that have to be made to her medicines. The labs are showing that her liver enzymes have increased unexpectedly. She had an ultrasound taken on her liver, looking for signs of GVHD activity - and while they were at it they continued on to ultrasound her stomach, gall bladder, and kidney. There was nothing unusual to report, though it is possible that there may be some GHVD in the liver that is just too small to report. They're increasing her ursodiol dose to better protect the liver.

One of the other medicines she takes seems to be causing a problems now since her triglicerides have increased. It's a known complication of the rapimune, an immune suppressant. They reduced the dose she takes of it since she's going to need to be on it for about 6 months. It's just another medicine that it's important to get the correct dosage for.

It was nice to have Michelle around for the trip down to City of Hope. (Thanks again for driving, Michelle!) The picture is of Krista and Michelle having a good time waiting for the valet to bring the van when they were ready to go. Things got a little complicated at that point because our van's battery had drained in the parking lot and the van wouldn't start for the valet. Fortunately, he was able to jump start it and the van seems to have recharged after the long ride home. At least it restarted easily today when we went off to see Trevor sing with his school choir. What a beautiful event. We're starting to get in the Christmas mood.

My cough has started back up in the last couple of days, and Trevor's started coughing too. We're trying to give Krista plenty of space to minimize the chance of her catching it too. Praying for healing for everyone here!
And He said, “If you will give earnest heed to the voice of the Lord your God, and do what is right in His sight, and give ear to His commandments, and keep all His statutes, I will put none of the diseases on you which I have put on the Egyptians; for I, the Lord, am your healer.”
(Exodus 15:26)

Thursday, December 12, 2013

Day 51: Big Day Tomorrow

Krista's continuing to do well here at home. Tomorrow she has another checkup down at City of Hope.  She has to leave by 6:30 am so that's going to be a challenge for her. I have to stay here because the cleaners are coming tomorrow also. Isn't it so nice that our friend Michelle is going to take Krista down and back. Thanks, Michelle!
I will listen to what God the Lord says;
he promises peace to his people, his faithful servants—
but let them not turn to folly.
Surely his salvation is near those who fear him,
that his glory may dwell in our land.
Love and faithfulness meet together;
righteousness and peace kiss each other.
Faithfulness springs forth from the earth,
and righteousness looks down from heaven.
The Lord will indeed give what is good,
and our land will yield its harvest.
Righteousness goes before him
and prepares the way for his steps.
(Psalm 85:8-13)

Wednesday, December 11, 2013

Day 50: Working

I was amazed to hear that Krista folded and put away the laundry while I was at work today. I meant to do that myself when I got home, but she beat me to it. She said that she didn't do it all at once, but she completed two basketfulls. Thank you, Lord, for how quickly she's progressing in her recovery. 

All your works praise you, Lord;
your faithful people extol you. 
They tell of the glory of your kingdom
and speak of your might, 
so that all people may know of your mighty acts
and the glorious splendor of your kingdom. 
Your kingdom is an everlasting kingdom,
and your dominion endures through all generations.
The Lord is trustworthy in all he promises
and faithful in all he does. 
(Psalm 145:10-13)

Tuesday, December 10, 2013

Day 49: Sleepy

After the big day yesterday, Krista had a well deserved sleepy day. She slept in late today and had a good afternoon nap. Both those worked well with our schedules, since she was awake when we were home. She's not got much energy or strength right now, but it's good to be able to share our regular days together as much as we do.
Therefore, since we have a great high priest who has ascended into heaven, Jesus the Son of God, let us hold firmly to the faith we profess. For we do not have a high priest who is unable to empathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet he did not sin. Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.
(Hebrews 4:14-16)

Monday, December 9, 2013

Day 48: Blessed

Krista had an appointment for a checkup at the City of Hope today. Our friend Kim so generously offered to take her down and back. It sounds like they had a good time visiting, and the checkup went well also. She's wiped out tonight, tired from the activity but satisfied with a day well spent.

I was able to go back to work today. My cough is actually almost gone now. I am just in awe of how blessed we are. I found an anonymous financial gift left in my office (thank you whoever is behind it)! Krista also says that we have received a large donation online. Thank you all so much for your generous help with all that we're going through. May The Lord bless you many times over!
How blessed is he who considers the helpless;
The Lord will deliver him in a day of trouble.
The Lord will protect him and keep him alive,
And he shall be called blessed upon the earth;
And do not give him over to the desire of his enemies.
The Lord will sustain him upon his sickbed;
In his illness, You restore him to health.
(Psalm 41:1-3)