Sunday, May 13, 2007

Transplant +6 months

Today marks the six month anniversary of my transplant. I would love to be sitting here in a state of remission, but even though I'm still dying I thought it was worth noting. The odds are certainly against me to make it a year past transplant, so I value each day. I try to remember that I've beaten multiple odds just to be at this point, and that I am an individual, not a statistic. I was essentially killed four times in as many months last year...sometimes I wonder how it is possible that I am still alive.

I've been using a much smaller bandage on my central line, giving the majority of the skin some time to heal. It seems to be doing so, slowly but surely. I'm still not sure what to do about the skin immediately around the site. Someone mentioned an alternative bandage that I am not familiar with -- I need to check with my doctor to see if it is an option. I was originally told central lines only stay in about six months, and I'm past seven months now, so I'm not sure if they really know what to do once the skin starts rejecting adhesive. Thanks for your prayers. I'm really grateful that the site itself is remaining free of infection. My counts will be falling this week, so it's especially important to avoid infection.

Friday at 8 a.m. I'll be at the Siteman Cancer Center (Barnes) for my next DLI. It will be a larger infusion of cells this time (last time was 10 million) and the same prayer requests apply. It would be "good" to have manageable GVHD and the Graft vs. Leukemia effect. I will be honest and say I am dreading Friday. Anyone who knows anything about GVHD knows why. It's like holding a loaded gun to your head and pulling the trigger. I just can't help but feel a little crazy for going through this again, but I know I don't have any real options. Times like this I stop and remember I'm dying, and any benefit outweighs the risk at this point. I'm anxious to see what my labs do this week. We've been told repeatedly that it takes at least three months to see an effect from Decitabine, and since I've completed three courses I'm really hoping the blasts stay down this time and don't bounce back up again. I watched a documentary on Discovery last week called "Living with Cancer." There was no mention of God at any point during the show, but other than that I found the comments by those being interviewed echoed a lot of my own thoughts. Lance Armstrong talked about taking a crash course in oncology, and always getting copies of his labs and test results and viewing them like a score in a competition. I've approached leukemia in the same way -- often living and dying emotionally by the latest results. Not sure if that's the best thing to do, but to fight is to live in my opinion.

26 comments:

Anonymous said...

God Bless You for your honesty and for sharing your story with the "blogger world".I check your blog daily and admire your faith,strength,insight and knowledge regarding the unfair road that you have been forced to travel on.Blessings...

Julie said...

I don't think I've commented before, but I've followed your story for a few months now. My prayers are with you and your family. My husband is a researcher at Barnes, we live just down the street, and my prayers are with you all. If you ever need anything that we can help with, please let me know.

Wendy in IA said...

Continuing to pray for you, Amy... That you will be sitting there in full remission.

Happy Mother's Day. I thought about you and how wonderful I'm sure it was to spend it w/Gary.

Alivia's Momma said...

Hey Amy....Happy Mother's day. I am thankful that you are with Gary today and not in the hospital. I will be praying for you this week. And next year at this time let's meet up somewhere so you can meet Alivia and I can meet you. That's what I'm praying for.

annb said...

I will keep you in my prayers.
annb

dillyweed said...

Happy Mother's Day, Amy. I hope you got a chance to collect lots of hugs from Gary today!
And I'm so thankful that your skin around your central line is gettng a chance to heal with that smaller bandage.
You are continually in my prayers. And I'm comforted by the fact that you are in our Lord's hands through all this.

Anonymous said...

Thank you for the update Amy. I will be praying for you this week.

love,
Megan Bischof

Jenny said...

Happy mothers day, Amy. I'm sure you are savouring the day as something infinitely precious. Try some paw-paw (papaya) ointment on your rash. Make sure it is as pure and close to 100% as possible. This example may sound strange, but I use it with great success on diaper rash. Should you not be able to find some, I would be happy to post some to you. (I hope that doesn't sound creepy)
Still praying,
Jenny.

Julie's Jewels said...

Thank you again for the update Sis. Amy...my church and our family continues to pray for you daily. I rejoice each time I see a post from you for I know it is God that has allowed you to be able to do so. I'm sorry this process is so hard for you physically but I rejoice that you are staying strong in your faith in the Lord as He brings you through the treatments and what is happening to your body. My prayer is that you will always remain as strong or stronger and continue to draw closer to your Lord and Saviour. ((((((((HUGS)))))) to you!!

Carey said...

Your in my prayers today and all week. Im glad to hear your skin is slowly healing, thats a great praise.

Laura said...

Amy,
I know I don't know you or your family, but I have been keeping up to date on your story for quite a while now, and praying often for you! I could never understand what you are walking through right now, but all I know is I can see God at work. Its amazing the hope we have as believers when we walk through trials knowing that God is doing a work that we could never fathom or imagine with our own minds. My husband and I will continue to pray for you, thank you for so humbly and openly sharing, you'll never know the way your story is affecting others!

3carnations said...

I've just discovered your blog. I'm so sorry for what you are going through, but you show such grace and faith and strength...I pray that God will bless you and your family. I can imagine that on top of everything else, it must be so hard to miss so much time with your son. I will give my son an extra hug tonight for you and your son.

Alicia said...

Amy-
I have been following your journey for some time now. I prayed for you today. I have been in the "cancer world" for 13 years. I had chemo and all that it comes with. I have worked at a camp for Kids with cancer for 13 summers now and have seen the effects of GVHD and I cannot imagine the fear that you face. I trust that God is good even in times like these. I trust that He knew ALL about this situation before the foundation for our earth was in exsistance. I also know that in these times, some of the promises of God seem unbelievable. I pray that you will believe God's promises and trust in Him for your strenghth, courage, healing, and comfort.

I watched teh "Living with Cancer" special as well, I thought it was a very acurate description of what Cancer is like for us. I am sad that there was not a Believer in teh special though, it would have been a wonderful witness to God's sovereignty.

Keep your eyes to the hills...

Psalm 121
A song of ascents.
I lift up my eyes to the hills—
where does my help come from? My help comes from the LORD,the Maker of heaven and earth. He will not let your foot slip— he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep. The LORD watches over you— the LORD is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night. The LORD will keep you from all harm— he will watch over your life; the LORD will watch over your coming and going both now and forevermore.

Linds said...

Continuing to pray, Amy, and to hold you up to the Lord. Your family too. You are an amazing lady, and an inspiration to all of us. Go well this week.

Amber said...

Happy Anniversary Amy. You have been fighting so hard and are such an inspiration. I am proud of you for this accomplishment. I will continue to pray for you in this journey!

Jessi said...

Amy,
Thanks for the update. I'm sorry I don't post very often. I feel so inadequate about what to say since I have no way of really understanding what you're going through. But I do know the One who understands what you're going through and so I'll talk to Him about you! :) We love you and are so grateful for your wonderful testimony. You are definitely helping me as I am going to school to become a nurse. I am learning more about meeting the emotional, physical, and spiritual needs of a patient from reading your blog than a college textbook could ever teach me!

Love,
Jessica

Rachel said...

I will certainly continue to hold you in my prayers Amy. I hope that all goes well on Friday. Thanks for posting and letting us know how you are. God bless.

Jules said...

A little belated, but happy Mother's Day. I love your courageous spirit. You truley are a gift from the Lord and just know that our family loves you very much and continues to pray.

Heather said...

Amy, the Lord continues to remind me to pray for you. I don't know what to say to encourage you except that every day you live you show whose side you are on and just as it is encouraging to me..it is encouraging to all around you. Keep up the good fight!!-Heather

Dawn said...

You inspire me every time I stop by. God bless you as you continue to live for Him through every difficult moment.

Anonymous said...

Amy, Brandon, and family,
We continue to lift you up to the Lord, gladly knowing Whose you are. The tv program doesn't mention our God and His greatness in all that He does -- what joy to see your "unfeigned faith" as God continues to supply all your needs. Your trust and hope in the Lord in this time of suffering has touched far more than you'll know this side of glory. As He graciously strengthens and comforts you with each petition, we thank Him for His protection and for you all. Your lives are a tremendous testimony of a race that is being run with patience and is an encouragement to us.

Clayton, Lisa, Sadie, and Maggie

Anonymous said...

Dear Amy, Brandon, and Gary;

We are thankful you were there for Mother's Day. Hope it was a good day for you. We continue to hold you in prayer. Many ask how you are doing. I know without experiencing it we really don't know what all in going on for you but we pray for your comfort, strength, and healing.

May the Lord use you in these days and bring you even closer to Him in these trials.

Love to You All,
Don and Lilan

FROM INDIANA PA said...

GOD TOUCH YOU AND HEAL YOU
THIS IS MY PRAYER !

Especially Heather said...

Amy,
I first followed your blog back about six months ago, back before my own brain cancer.

Your journey gives me strength...

gold said...

I have been praying for you everyday.God bless.

Anonymous said...

Amy, a friend pointed me to your web site and I've been following it and praying for you for several months.

As I read your latest blog, I thought I could pass on a couple it things:

1. You can have a central line for years - My grandson lived on TPN and had a central line for about 2 years before he had a small bowel transplant. (on a side note, NG tubes are only supposed to be used for about 1 month but he's had one for 4 years......) Check out this web site for a support group for folks who live on TPN (via a central line) for years: http://www.oley.org/

2. My other suggestion is for you to ask about using IV 3000 tape for you IV site. This is similar to Tegaderm but worked better for my grandson.

Keep up with your blog, I love to check in and see how you are honoring God!