January 1, 2011

Happy New Year!!! Dry baked potato on NYE and a return to sugar-free clear liquids on NY Day, not exactly what I had in mind, but I guess it's one for the record books. (Didn't feel quite as bad until I heard the guy next door talking about the pizza that he had delivered to his room last night, so unless you also had a plain baked potato, I don't wish to hear about your NYE treats :)
To no surprise, we won't have any pathology results until the beginning of the week so looks like I'll be here for several more days. It's hard to argue with the doctor about having to stay when she walks in a says, this could be GVHD and GVHD can kill you. So I guess I'll sit and wait. I really don't feel too bad. No fevers, stomach aches seem to be a little better. They have me on steroids, gut rest and are starting to change my anti-rejection meds.
The “excitement” so far has been that it's ridiculously cold in Omaha and my room didn't have heat. Wouldn't you know! (or as my grandmother would say, “That's a fine how do you do.”) Since the unit was full, I had a chilly night and then this morning they decided to move me to COOP so I get to stay with Mom in a heated room! Right now I'm sitting in the sunshine and it feels great. I don't really know much else but will try to send an update now and then. Hope you're all doing well and that the Chiefs play well tomorrow – will give me something to smile about.

The Lord is good unto them that wait for him. But they that wait upon the lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary; and they shall walk and not faint.

Another curve in the road

I found out yesterday that I will be spending NYE in a beeeutiful, breezy ivory gown with blue trim and a slit all the way up the back. Or if I'm really feeling wild, I can have the split going up the front – that's the beauty of the hospital gown. Things continued to go down hill and by Monday night/Tuesday morning I was feeling pretty bad. Called Neb and they wanted me seen as soon as possible so Mom, Dad and I jumped in the car and headed to Omaha yesterday. Once I got here and they realized I had lost over 10% of my body weight (a wimpy one to begin with), they broke the news that I needed to be admitted, will have bowel rest and get scoped this afternoon. Yippee. The final results from my upper scope came in yesterday and they said after looking at all the slides and stains, they felt it was GVHD and started me on steroids last night. All the cultures have come back negative which is a surprising yet good thing. This is definitely not what I would have liked for the holidays, but if it gets me feeling better, I'll take it. I so look forward to the day where I have the energy to take a walk, have a game night with friends or just do my laundry. Last night, I woke up with “Blessed by Your Name” playing in my head – I let the lyrics roll as I tried to go back to sleep and this is what I heard, “You give and take away, You give and take away, my heart will choose to say, Lord blessed be your name” and that is what I'm going to do. I'm going to choose to trust in wisdom greater than my own and force myself to believe that my desires to play ultimate and go out with friends pale in comparison to the eternal plan.
May you all be blessed this day.

Still waiting

The final results are still not in, but what's been reported so far is encouraging - no signs of GVHD. Thats great, but doesn't explain why I've been feeling so sick and losing weight. We sent out a few more labs yesterday so hopefully those will be back in the next day or so - trying to rule out bacterial infections in my gut.
Everyone made it safely home for the holidays so it was good to see all the smiling faces. The kids always manage to keep the house hopping. Wasn't able to "hop" with them this time, but hopefully next time! Again, not what I had pictured, but I just have to look at it as another step in my recovery. At least I wasn't in the ICU.
I hope you all had a blessed holiday and safe travels!!

Waiting...

The scope went well yesterday and without complications. They said that everything "looked" fine but we'll have to wait for the pathology reports to know if there's any graph vs host reactions going on. Normally that would take 48-72 hours, but with the holiday, all bets are off. Hopefully they'll be able to give me some sort of answer and I pray that the "answer" has a solution. Each day I seem to feel a little worse than the one before and it's very frustrating. I was so excited about the holidays and had so many things that I had hoped to do. Now all I really feel like doing is curling up on the couch with a warm blanket. Hopefully I'll have enough energy to fake my way through the next 10 days. This is not the way I envisioned Christmas. Please pray that things turn around. I really don't want to spend the holidays in Omaha or worse yet, KU Med.

Merry Christmas

No results so far, I guess the pathologists want to spend Christmas with their families too. Hopefully I'll hear on Monday. I don't send many Christmas cards so figured I'd just send out the "letter" that went out with the few cards that did get sent...
I can remember last year at this time, after a 2009 full of strange medical occurrences, writing about how I was looking forward to 2010. Little did I know what 2010 had in store! What a ride, and year full of blessings it has been. In 2010 I lost a spleen, lost many unwanted cancer cells, got a new blood type and received a new appreciation for God's faithfulness. The blessings and support that I have received over the past year have been overwhelming. For me, the message of this Christmas is one of hope and praise, and living each day to the fullest for we have an awesome and powerful God. I do not know the plans that God has for me but I know beyond any doubt that whatever it is, He will not allow me to do it alone. And if I set aside my agenda and seek His, He will accomplish wonderful and amazing things beyond my wildest dreams.
I pray that you are able to escape the hustle and bustle of American life and see the new beginning and promises offered this Christmas. Many blessings to you all.

Bumpity, Bump, Bump..

Merry week of Christmas to everyone! Thought I’d try to squeeze in at least one more update before Christmas and if I get any new information between now and then, I’ll send out another. Another bump in the road, Dr Vose is suspicious that I’m starting to reject my stem cells and is thinking that the symptoms I’ve been experiencing for the past 10 days could be due to GVH of the GI track. The only way to know for sure is with a biopsy so tomorrow I’m scheduled for a scope (starting from the top – praise God for the little things!) If they find it early, it should be something that can be slowed/reversed with meds so it will be good to find it if it’s there. Not exactly the Christmas week I had envisioned, but at least I’m at home and with family!

"Day" 6 months!

Well, the 6 month anniversary of my transplant has come and gone. To be honest, I'm glad that I've already completed 6 months of recovery, but I'm no where close to where I had hoped I'd be 6 months out. Most of my days are “ok” but very few are “good”, still waiting on the energy and desire to get back into exercising and regaining strength. We traveled to Omaha today (got home just as the freezing rain was starting to fall – praise God). Since changing meds before Thanksgiving my numbers have continued to slowly improve and the swelling is virtually gone so Dr. Vose was happy about that. I have a couple symptoms that could be due to a virus or GVHD so we're going to watch those for a few days. If I'm feeling well next week I'll probably get to stop my anti-rejection med – yea! So much to be thankful for, I need to focus on those.