Still stuck in the hospital. I may be able to go home tomorrow...I just have to be fever free for a while. I did manage to get them to stop the Vancomycin (?) which was causing "Red Man Syndrome" and in my opinion, the fevers as well, so I expect the next day to go better. I ran a fever with the "bad" bag of blood the other day and they've had me on antibiotics ever since. As with my original stay in the hospital, the fevers seem to coincide with the antibiotics and I'd just prefer they pull them all. I'm still on one, but at least it's an improvement. I'm still neutropenic and my platelets are low today, so I'll get a unit of those sometime this afternoon.
The dermatologist's biopsy verified that I do have Sweet's Syndrome on my hands. The rash from the Vanc has irritated it a lot, and I'm quite itchy, but overall I think it's getting better. They've been giving me a smaller dose of Benadryl, which I seem to be able to handle o.k. and I guess it is helping somewhat.
Appetite is still deplorable and the food even worse in my opinion. The nutritionists have been trying their best, but I threw everything up the first six weeks I was here and have no interest in any of it now. They did find an expanded menu for me which helps a little. At least it's not the same old one-week rotation from July on...it's just so hard to not feel like eating anything. Last night I thought a salad sounded good, but I'm still under the neutropenic restrictions.
I'm having another bone marrow biopsy done on Monday. This will hopefully show that we have achieved a second remission, and I'm ready to move on to transplant. Please pray for good results. I told the doctors I don't want to feel it this time. Last time I did it without pain meds (I've basically done it without pain meds 3 out of 4 times) and I cannot, cannot handle it anymore. I'm too emotionally wiped to bear the torture. I don't know what they'll use since I don't react well to the normal options, but they'll either have to find something or it's just not happening.
I'm fighting discouragement. Please continue to pray for us. The journey is just so long and hard and I am so weary. I haven't seen my baby in several days it seems and I just want to go home.
Thanks Rachel for the "Diva" package, it really brightened my day.
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9 comments:
We're here for you, Amy, and constantly petitioning the Lord on your behalf.
"Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak." Is 40:28-29
This is His promise to you.
With love,
Faith and Matt
There has to be a way for them to do this procedure without torturing you. This is the day of modern medicine - they'll find a way. I don't blame you at all. You're worn down. Enough is enough.
I know you miss your baby. I so hope you get to go home again soon.
Of course I'll keep you in my prayers. I've never stopped praying for you.
I think the worst part of an illness like this is not having a time-line where you can say, "This is where this ends." It's the uncertainty that wears you down. Even if they told you it would be a year before you were cancer-free, it would be a fixed time that you could work toward, knowing at the end of that year the struggle would be over for you.
I'm still praying for you, Amy. I'll put you on my Ladies Sunday School prayer list Sunday morning, and we'll have special prayer for you. I'll print out this post on your blog for all of them to read.
Hold on, my child. Joy cometh in the morning.
Amy,
We have been praying for you since July and you are on our church's prayer list. I KNOW that God works in miraculous ways and HE ALWAYS answers prayers.....just not always the way we intended. I'm praying for peace and comfort for you and for your family as you go through this valley in life. Continue to go on in HIS strength, not your own, because "you can do all things through Christ who strengthens you." He is the Ultimate Healer and He knows every plan He has for you. He can see the big picture. He can see what is beyond this current valley. You are in His care. Continue to pray, read your Bible, tell people (especially God!) about your problems.
Much Love,
The Spaulding Family from KY
Prayers for you tonight, Amy.
Amy in AZ
Hey Amy,
I'm praying for you! I hope your day was a little better than the previous ones.
Love ya lots!
Emmy
Amy, although I have never met you and only know you through this blog, please know that you are in my thoughts and prayers every day. I know the road seems long. My M-I-L had AML and I was with her when she went through many of the things you describe. Like you, her faith was strong and carried her through.
Remember His promise:
"...I am with thee and I will keep thee in all places, whither thou goest..." Gensis 28:15(a)
In Christian love,
Erin in Ohio
Amy, We are continuing to pray for you all through the day. I know that doesn't make things easy and you have had much more than your share of pain and suffering throughout this ordeal. Your body just doesn't react to medications, etc. as the doctors think it will and that causes more problems. I wish there was a way we could bear some of your pain, but God just didn't make us that way. We love you and will continue to hold you up in prayer. Our Sunday School class and Wednesday prayer group continue to pray for you as well. I pray for peace of mind and soul, as well as for physical healing. God bless you. Much love, Grandpa and Grandma Linda
Amy, when we are the weakest God carries us. I pray this for you. I cannot even imagine what you go through on a daily basis but I know God will make a way for you.
You are always on my heart and mind and then I pray and pray some more.
Love in Christ
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