I almost wrote this morning, because I was having a really hard time accepting being back here again -- so soon. I want above all else to be real, and today has been a wide mixture of emotions and battling things out in my head. I don't want to be here -- yet I'm exactly where God wanted me to be today. I spent quite a while crying and feeling sorry for myself, and then asked for Ativan and listened to some Sovereign Grace worship music. (Thanks Janice!) Went a long way towards boosting the spirits and the rest of the day has gone pretty well. My mom is with me again -- she has been so faithful to stay with me every week during my treatments. I greatly appreciate her sacrifice and that of my family as well as they function without her at home so much of the time.
I had an MRI this evening. I've been having headaches, and though I think this one was due to a really poor night of sleep and crying most of the morning, they are being careful due to the possibility of neurological involvement with the disease. I've been warned that if the headaches continue a spinal tap is going to be scheduled and if they find leukemia it will mean administering chemo into the spinal fluid. If that doesn't make you shudder, it should, and I'm not sure what I'll do if we reach that point. For now I am just praying that the headaches will cease (as I mentioned, today was much different than than what felt like someone was drilling into my skull for several days last week.)
I'm back on the 6th floor, which is nice because I know most of the nurses, and in some ways it is like coming back to old friends. I may be moved to the 5th floor eventually if I qualify for transplant. I don't have that super long address posted yet, but for those of you who may have done better than me and actually copied it down somewhere, everything is the same except the room number is 6907. Just one room over from last time, so the view is about the same as well. I'll try to get the address from the nurse and have it posted by tomorrow sometime.
They started chemo last night. I have five days of two hour infusions for both the clofarabin and citarabine. Side effects haven't really hit yet. My appetite hasn't really rebounded from the last round and I'm down about five pounds, so I'm hoping to at least maintain my weight with this round. Clofarabine has about an 80% vomiting side effect rate, and being the "easy puker" I'm kind of expecting things to get a little rough.
For those in the Columbia, MO, area, the internet provider Socket is hosting a blood drive from 10:00 a.m. to 3:00 p.m. Friday, August 17 at their headquarters at 2703 Clark Lane (in Columbia). Just FYI. :)
Thanks for your prayers and encouragement.
Amy
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34 comments:
Sorry you are back in the hospital Amy. What a blessing that your Mom is with you.
I'm still praying for you and your family. God bless!
Amy, you don't know me and i don't know you, but I've been praying for you and your family...and I continue to pray! Sometimes I don't feel like it's enough, but then I remember that I'm talking to the Creator of the Universe, and I am assured that HE's in control!
IN Christ,
Angela
Please know that we are praying for you in Michigan tonight. God Bless you Amy.
Amy, we're still praying for you regularly. You have taught us so much about our Lord.
Amy,
I just was looking up something earlier today about nausea (I too have a puke-prone tummy with just about everything out there, and usually triggered by anxiety)... and in reference to that I found out that the 'progressive relaxation method' is also really successful with chemo patient's experiencing nausea. It's something that I have been trying and it really helps me relax my body. Just thought I'd mention it and maybe you can get a tape and try it.
It's originally developed by Jacobson and is referred to as the PRM or progressive relaxation.
You are in my prayers, as always.
Sisters In Christ,
-Briana
Truly, you are back with "family", your leukemia family. They know better than most what you going through. But what you are facing...well I am still praying among many others. You are a brave wife, mother, daugther and friend. Your honesty is GOOD, your blog world needs to know what you are going through.....thanks you for that! Gigi (livi's grandma)
Thinking of you today and praying for healing..
God Grant you peace..
Phyllis in Indiana, PA.
Another stranger here, but sister in Christ, praying and caring for you. I am so sorry that you are going through this. Today I am praying for comfort, strength and no puking!
Amy,
How well I relate to the crying before each chemo!! It is definitely alright to cry! It does help releive some of the tension and then you can get on with what you know you have to do. I will pray for an extra measure of God's grace on you this week. I will also pray that your side effects will not be bad and that the chemo will do its job and work for you!
Love, Gina
Still praying for you a nd your family Amy!
You really are an inspiration to me!
In HIM - Mindy
You are such a blessing to me... What an example.
You are in my prayers!
Thanks for communication on your location and treatments. We continue in prayer for you and trust the Lord of strength and comfort to sustain you all in this great need each day.
Love to You,
Don and Lilan
I have been praying for you as I thought it would be hard to leave home this time.
Thanks for being transparent as it helps all of us to know how to pray for you and your family.
Continuing to pray for healing, peace of mind.
Blessings,
Teresa
So what's the view like from room 6907?
I hate it for you that you're back there so soon...but am grateful that you have the chance to try again.
Much lovins and a Yee-Hah from the Bluegrass state.
A morning spent crying is quite alright - you're allowed, entitled and expected to do that. But please know we are fervently praying for you!! If there is a God - and I believe with all that I am that He is real - then He is hearing the prayers of so, so many on your behalf.
Amy, keep up the good fight. You are indeed a fighter, a warrior!! Though your body may be weak, your spirit will NOT bow down, and THAT is why, you, who were given 8 weeks to live about 20 weeks ago, are still here, still breathing, still talking, still loving.
My God bless you as you walk through this valley - we will pray you through to the other side!
After I read today's post I scrolled back down to see your smiling face, reminding me that this too shall pass for you. I get so very sad for you and then when I cry out to God He assures me that He is with you and that although we don't understand things like this and their purpose, He does.
I am sad that you are back in hospital but so thrilled that you are back with the staff that knows you and cares for you so well.
I will pray extra hard that God will soothe your tummy and leave you in a 20% range of not experiencing that horrid side effect!
As always, internet hugs and genuine prayers!
Wellllll, hello new friend! A 'friend of a friend' let me know about your situation. I in turn, emailed everybody I knew around the U.S. and the world concerning platelets and prayers for you. As a BIG side note, I wanted you to know that I've had a liver transplant and a baby boy, and was given 12 hours to live when our son was born. Our 'baby' is now almost 20. I had the transplant down at Barnes and was in what I called 'Barnes Bed & Breakfast' for over 4 months. I say this to let you know that I realize some of the unseen blessings that our precious LORD will allow to unfold in the midst of your illness. People's lives will be touched, people will become connected and His love will be shared...thru you! People will know that caring for others, praying for others and helping others is such an integral part of His will for all of us.And the good thing is....He will never give YOU more than you can bear in this process. I felt such an overwhelming presence of God's love while I was sick that it radically changed my life. What He is doing thru you will impact eternity for ubknown others. Just thought you'd like to hear from one of these 'unknown others' personally. I will continue to pray for you and yours and God WILL give you all He knows (in HIS limitless wisdom)that you need. In His love and with prayer...Cindy
Amy
Your faith is holding strong, even though you are weak...my prayers are always with you. May God's grace abide heavily on your life and your family's lives as well.
With my heart
April Martin
My prayers are with you.
Amy, thank you for your update! I continue to pray for you and will be including your dear family who is going through this trial as well. Bless you dear one-Heather
Thank you for writing and always sharing so candidly. I pray for your regularly and check your blog daily to see how you are doing. I pray God overwhelms you with His peace and strength and that this round will be better than you could dream and more effective than even the doctors can comprehend... for the glory of God. Thanks for your faithfulness through such a difficult time. Your story fuels my own faith. God bless you.
I'm praying for you! This is one of those times that it is hard to keep praying with faith and keep believing that God is there and can answer. I know he is though so I keep praying! You are a great encouragement to me!
Posting some LOVE!!
Abigail
This old world only offers pain and suffering. We'll be so happy when Jesus comes to end it all. In the meantime I know it's hard and questions go unanswered but believe God is allowing this for a reason. We might not see it now but He promises to never leave us nor forsake us. Somewhere someone is being brought to Him by what you're going thorugh. You're in my perpetual prayer that God will give you the strength to hold on.
Question: Have you considered looking into Mayo Clinic? They're the leading and cutting edge facilities in finding answers to what ordinary drs have given up on. Please consider it and contact them, they may be able to give you additional help that will bring you back into remisson soon.
Hoping and praying for you, Amy.
I don't know you, but came across your site. Been reading off and on for a few weeks. Do you have a caringbridge.com site?
I read each of your posts. I rarely comment, but I need to let you know I'm here. I think about you - and I often read verses that are promises.
My SIL has breast cancer - and she enjoys the verses I share with her several times a week.
One day last week - we talked about the peacefulness of this one. Usually people read the whole chapter. But we concentrated on these two verses. I hope it comforts you today.
He leads me beside quiet waters, he restores my soul.
-- Psalm 23:2-3
Amy-
Sweetie...it seems like one thing after another. We know God is in control and you mentioned you know that's where He has you right now. Know I am praying every day.
Lovingly,
Shari
We all have trials....some seem so much bigger than others. But, those of us who maintain & hold onto our FAITH ....He grows us spiritually ....& we can gain so much in the deepest darkest of lifes valleys. I thank GOD for your strength...& example of Faith....when your in pain & are so tired. I pray for God's great Harvest of Joy....to be near...& that God's will be done. Praying for you today ...my sister in Christ.... Gentle hugs...& warm smiles.
Your honesty is beautiful (as are you)and your faith is amazing. Prayers are sent your way!
We are praying for you!!
Amy,
Everyone in AIU is thinking of you and praying for you.
Dennie
Amy, I pray for you often and I know God is in control. Your mother is with you so ask her to remember the breathing and relaxation exercises she learned in childbirth class with me. They will help with your nausea. Smile often!!It supresses the gag reflex. I love you.
Lee Ann
I'll be praying for your headaches. God bless you, sweet sister!
Dear Amy,
We continue to keep you in our thoughts and prayers each day. Thank you for your very sweet email. YOU have been such an inspiration to us, and we really thank you for that!
I don't know if you had it already or not, but Joe told me to let you know that a lumbar puncture is nothing compared to a bone marrow biopsy. He did experience headaches AFTER the procedure though. Praying all goes smoothly with you!!!!!
God's love,
Karen & Joe
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