Saturday, April 21, 2007

April Update

I read another blog this week by a woman about my age who also has AML. She's currently undergoing the same experimental treatment as me (decitabine) and expressed that if this doesn't work, it's the end of the road for her. I understand the emotional rollercoaster she is on. Fighting to live. The good days for us are the worst days for the rest of the world...our feelings become very relative. My definition of "good" has come to mean an entirely different thing than it did a year ago.

That being said, things are going as well as can be expected right now. Chemo week came and went without too many horrible side effects -- just the standard complaints. I've been able to keep my weight up for the most part, and finally exceeded my starting weight from a year ago. It's still too early to tell, really, if the decitabine is working, though it appears that the disease isn't progressing at a rapid pace. I'm still here -- that's proof enough, I suppose. I still require regular transfusions. Red Cross commercials make me cry. I don't think people really realize the gift they are giving when they donate blood product. It is truly a gift of life. My counts are low this weekend and I am fighting the weariness, shortness of breath, aching muscles, and all that goes with it. It has me actually looking forward to spending Monday getting transfusions.

I may not update for a little while, unless there is something important to note. I'll see my oncologist on May 2nd, do a week of chemo starting May 7th, and have another DLI on May 18th. I'll be getting a much larger "dose" of cells this time, so I would appreciate prayer that it is effective without killing me. Trust me, we transplantees view GVHD with much fear and trembling.

As always, thank you so much for your prayers, love and support.

33 comments:

Laurel Wreath said...

Amy, I am without words, except to say you are in my continued prayers. Prayers for strength and endurance. And peace through all your apointments in May.

Blessings.

Anonymous said...

Thanks again for the update on things. You three are on our minds and hearts very often each day. Will plan to pass this on to the folks at church tomorrow, God Willing.

Hope you can rest this week end.
May the Lord continue to strengthen you.

Love to You All,
Don and Lilan

Kim said...

Amy,

I am praying for you as always. I'm so thankful the disease is not progressing at this point. That is wonderful news! I am praying for your stamina and continual perseverance as you go through this. Enjoy your family and take care. I hope to hear from you soon!

Kim

Joyful Days said...

Sending up many prayers & petitions for you.

Rachel said...

You remain on my prayer list Amy. God Bless you!

Barb said...

You don't even have to ask, Amy. You've been in my prayers from the beginning and I'm not stopping now. You can count on it.

April said...

Amy, each morning when I start my prayers, you are at the top of the list. You will continue to be in my prayers, as will Brandon and Gary, each day.

Your post today was so uplifting, to hear that you are maintaining your weight and especially that you are still here! Thank God, you are still here!

Be well, take care of yourself, and know that we are all praying for you daily!

Hugs and blessings....

Leslie said...

You have really been on my mind this last week--thanks for the update!! I will continue to keep you and your family in my prayers. Grace and peace to you!

Kelli said...

Praying praying praying.

PEZmama said...

I am still praying for you. Thanks for keeping us all posted.

Linds said...

I am with Barb here, I have been praying from the start, and am not stopping. I think of you so often, Amy.

Amber D.M. said...

Hugs, love and prayers!

Linda said...

I've been praying for you for a long time now Amy. I will continue to lift you up as you continue with your treatments. I pray His peace, grace and love will just permeate your heart.

Jessica said...

Still praying! Thanks for updating! You are in my thoughts A LOT and also your husband and little one! God is going to do something amazing through this... I just know it!

Robin said...

It's been almost two months. I'm so happy you're still here. I will continue a vigilant prayer for complete healing.

Julie's Jewels said...

Once again thank you for updating us. I've been checking daily to see if there was anything you had posted. I was thankful tonight to find that you had. We are continuing to pray for you and the family. I understand you not getting to update much lately. I'm sure it takes alot out of you just to sit at the computer to keep us posted. But I for one sincerely appreciate it. When I see an update from you I report it to our church. We love you and appreciate your testimony and the strength and grace God is giving you through this. There is only one thing you can control through this and that is your response to it. My husband preached tonight about Job's trials and that the only thing he could control was his response. It was so true!! May your faith in Christ remain strong as you find yourself weak in body from all of this. God is faithful even when we aren't. Love you Sis!!

Mindy said...

Thanks for the update.
Amy, my prayers are with you and I want you to know taht reading your updates - seeing and FEELING your strength as a source of encouragement to me. You are God's light shining from above!
In HIM -
Mindy

Carrie said...

I am so incredibly encouraged by you, Amy, and so are countless others! You are finishing strong, you are glorifying your Savior even in your greatest suffering! Thank you so much for your fierce faithfulness to not curse God, even in the midst of tremendous physical suffering. I imagine that is a moment-by-moment battle, but you are fighting the good fight of faith! We are cheering you on, Amy, and lifting you up in prayer! We pray for your healing on earth, but are encouraged that, should God say no to that prayer, you have this to look forward to:

"And I heard a loud voice from the throne saying, 'Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning nor crying nor pain anymore, for the former things have passed away'" (Rev. 21:3-4).

Love and prayers from Arizona!

Monica C. said...

Thank you so much for sharing an update. I am glad that you are still here, that you are doing relatively well, and that you still hvae the gifts of hope and time on your side. Please know that you are in my daily prayers. God bless you,

Paulette said...

I too pray without ceasing Amy, I check on you everyday and pray for you. That is uncanny that you have found someone else your age in the same situation and I am sure it really is bittersweet.
may God give all the grace you need in this battle.
You have alot of prayers going up.

Anonymous said...

I found your blog through a friends blog a few weeks ago. You and your family have been heavy on my heart and in my prayers. Grateful to be praying to a God who can do more than we ask or imagine.

Love,
Amy Fedeli

Paulette said...

Amy could you post the other young womans blog so we could pray for her as well? Or send it to me? soulwriter1@yahoo.com I will be happy to pray for her as well.

Leigh said...

Amy,

You are constantly in my thoughts and prayers. Keep fighting and keep serving Christ. Thank you for your ministry!

God Bless,
Leigh Taylor

Anonymous said...

Our family is praying for you.

If you want to find people using the same treatment or in you situation...

www.technorati.com

is a blog search engine

Mandy said...

I've started to do friendship friday with the mister linky... i dunno if you're interested but it sure sounds like you would have a lot of great things to offer even if it's just about friendships you've made on your journey with illness... enlighten us!

Linds said...

Just to let you know i am still praying for you, Amy. Have a good weekend.

Anonymous said...

www.ethanpowell.com

Jenn said...

Amy, continuing to pray for you and your beautiful family! May your oncologist visit be uneventful tomorrow and may your strength be renewed daily.

Jenn @ Friends of Heroes

gold said...

Still praying for you. God bless.

Anonymous said...

I am sending a prayer your way--
You are such a strong lady..
~~GOD BLESS YOU SOOOO MUCH !~~
FROM INDIANA PA

purple cucumbers folk art said...

I am recovering from avm ,my thoughts and prayers are with you.
AVMs can occur anywhere in the body however BRAIN AVMs are of special concern because of the damage they cause when they bleed. They are very rare and occur in less than 1% of the general population. AVMs that occur in the coverings of the brain are called DURAL AVMs.

Lauren said...

Amy, I just wanted to let you and the readers of your site know that from now until May 21 the National Marrow Donor Program is offering free registration for donors. Usually donors must pay their own typing fee, but it is being waved for the next few weeks.

Here's a link to the site:https://donors.marrow.org

Nancy said...

Amy,I found your blog through another transplant patient named Ann. I have MDS and searched for 2.5 years for a donor. They finally found a donor in 2006, just prior to my disease becoming AML (I was at 17% blasts, 20%=AML.) You've been through so much and I'm inspired by your strength and courage. Keep thinking positive. My thoughts and prayers are with you. Nancy Sakakura