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.

Reasonable Expectations

I can't believe in my last blog I actually put in writing that I had successfully escaped catching my family's colds from Thanksgiving. That's like commenting mid-vacation about how all the flights have been on time or mentioning on the way to work how light the traffic is or saying the “Q” word around a medical office or hospital (quiet for those of you who opted out of the chaos). As soon as you talk about it, it's bound to happen. Well like clockwork, I sent my blog Monday morning and started feeling a little scratchy in the throat by that afternoon and by that evening I had to carry the box of tissues around the house with me. Ughhh! I started pounding the Vit C and zinc, and had a non-stop dialogue with God pleading that I didn't get sick. I pulled out the Vicks, added extra pillows and headed to bed, sure that I'd toss and turn only to wake up with a full-on cold. Surprisingly, I slept great, woke up with the alarm, no problem breathing, felt great. I thanked God but still wasn't convinced that the cold wasn't lurking, ready to pounce at any moment. It's now 4 days later, still feel pretty good. Little bit of a sniffle now and then but definitely nothing to complain about and yet still I'm leery to proclaim God's mercy and miracle. I privately thank Him a lot, but I hesitate to tell anyone else about my week. Why is that? I found that I do the same thing with the cancer – I've never spoken the words, “I'm cured of cancer.” I tell people that “things are going well” or that “I'm doing better than I should be” or that “the doctor's can't find any signs of the cancer” but I stop short of saying that God has cured me. I openly give Him credit for all that's happened, but it's like I don't want to set the bar too high. Am I trying to protect God??? If I tell everyone that God miraculously cured my rare, aggressive cancer, and then it comes back, is that saying that God failed? I thank Him for every day and try to live each day to the fullest but never presume or proclaim that this battle has been won. I've always been like this, even in competition; try to keep people's expectations of myself and others reasonable. I didn't talk smack very well because I didn't want to risk having to eat my words. And that's on the playing field, this is the God of the universe that we're talking about. What if that's not His plan and I go around telling everyone that it is? If I keep the bar a little lower, it keeps people's expectations a little lower so there's less chance that they'll be “let down” by my God – the God that I love and I believe can do all things and that has mercy on me every day. I don't want to take the chance of shattering someone else's opinion of my God or weakening their faith. So I continue to choose my words cautiously. I guess I'm still not sure of God's plan for my life. I'm sure that God looks down on me with pity and a touch of frustration, wishing that I'd let Him out of the box. He's a big guy, He can stand up for himself.

Being confident in this, that He who began a good work in you will carry it on to completion until the day of Christ Jesus. ~ Phil. 1:6

(side note: there is a difference between “cured” and “healed” – a topic too long for today)

God's promise

Sorry I didn't send an update last week. I had one ready to send on Thursday evening, but haven't had internet access for a few days so … Since I last posted, things have gone well. Energy has been good, the swelling in my legs has been stable (initially it went down significantly after changing medicines but that has slowed a little bit), no more swelling in my face, and despite traveling over the holidays, I've stayed “cold-free”! I'll draw labs again tomorrow and I'm confident that those will continue to improve. At work, our office is moving down the street, so I've been forced to go through my desk and all that I've managed to collect over the past 10 years. I really don't like moving so it's been a long week. But, in the process I ran across a couple of sayings that I had saved at some point along the way and thought I'd share. The words seem particularly relevant for me and they must be important if I've saved it for all these years, right?!! :)
God didn't promise days without pain, laughter without sorrow, or sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.