Thursday, August 03, 2006

The last few days

My husband encouraged me to update my blog. I've been fighting fevers since Monday, and dealing with a plummeting iron level as well, so my energy is pretty much zapped. Tuesday's CT Scan went fine. The tech let me see some of the pictures on her screen afterwards which I thought was really neat. The doctors told me the next morning that everything looked normal. No mushrooms growing in my cheekbones or anything like that. It was comforting to me to have the scan because it's easy to wonder when you have cancer in your blood if it truly hasn't affected any organs. They are still adding an anti-fungal drug to my long list of meds. They warned me about color changes and seeing colored circles, etc. Another side effect is seeing things that aren't there. That hit last night while mom was here with me. She was on the laptop and I kept asking her if she could see the man moving on the screen -- looked like a commercial running under the main screen she was viewing. I also started in with some rather violent teeth chattering and muscle spasms that lasted about 15 minutes -- until they administered Ativan. I've had the same dosage again today and so far all I've had are some color vision changes. Keeps things interesting, I guess.

For now my team is concentrating on getting me healthy. They haven't been able to figure out a cause for the fever. Other than a bit of a sore throat I really don't have any symptoms. They've drawn tons of blood this week for cultures but last I heard nothing was growing, so they don't know what it is. The fevers really wipe me out. I am anxious for them to end. My white count was holding steady today. It has quite a way to go before I can be allowed to go home. At that point we'll begin consolidation treatments and I don't know anything about those yet. They may be outpatient at Ellis Fischel or inpatient here at the University Hospital. I'm expecting some type of chemo, and I think the verdict is still out on a possible (sibling match) bone marrow transplant. Needless to say, the road is far from over. It's a difficult thing emotionally to hear "remission" and have so much joy with that, and yet realize there is still so much more really hard stuff to make it through. I'm beginning to read a little more about chemo side effects as well, and sometimes that can be discouraging. I told Brandon today that I need to be careful because I know my iron count is dropping (8 something today) and Dr. Papageorgio said he doesn't like to transfuse people my age, especially ones who are BMT candidates, so he won't unless my iron gets dangerously low, to quote, "Like a 5." I haven't been that low and really don't want to. The low iron makes me so tired and weary, and everything seems like too much, and I end up feeling tired and depressed. I don't want to get stuck there. I just need to still be able to remember to praise Him even if the days seem really dark.

I am also beginning to ponder some of the long term effects all of this will have on our lives. Chemo induces menopause in the large majority of women, and it can be temporary or permanent. I was told at the beginning of all of this that I will probably be infertile. I have heard of women who have made it through cancer and have gone on to have many children, so I know that can happen as well. It's just a hard kind of waiting game to see which catagory you fall into. At this time the doctors don't think that I'm menopausal, though I do seem to have a lot of the symptoms. I told mom today that sometimes I sit here and think, "Why didn't I get pregnant as soon as we got married? We could have 2 or 3 kids already." Or the reverse side, mourning the children I planned, but may never be able, to have. But then I realized that there isn't a child there to mourn if I'm infertile. God's sovereign over all -- family size included, and if our quiver is full with one, then that is all it was ever meant to hold, and praise Him for it. We didn't lose any along the way. I find comfort in that. These are the sorts of things that are going to be the hardest part of this journey, I think. The emotional and spiritual.

I've been spending this week praying for those of you who have written me and are going through similar sufferings. I know some of you have had bad test results this week, some yet to be determined. My heart aches for you and I want you to know you are being brought before the throne. I know His grace will be sufficient for you as it has been for me. Even when we don't really see it. My husband keeps reminding me to take it a day at a time.

A friend who attended Gary's birth shared from Matthew 6 in an e-mail to me recently. It has been going over and over through my mind.

"And which of you by being anxious can add a single hour to his span of life? Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble." Matthew 6:27,34

It's very, very easy to sit and play the mindgames with the statistics the doctors give you. It is so overwhelming to try to decided if this risk is worth that risk or maybe even a completely different risk. I start trying to figure out what's going to be happening down the road with my treatment, etc, and I think I need it yelled to me everyday to just take it one day at a time. I am hoping once I begin consolidation I can work with Dr. Perry again. He came by yesterday to see me and asked if I'd heard the news of my biopsy. I said yes, and that I wish they had let him tell me since he had to tell me all the bad news -- it only seemed right. He said the report had come across his desk that morning and he wanted to come see me in person. I'm so glad he did, because I so wanted to thank him. As he left he reached over, said, "You did good, kiddo" and gave me a "germ free kiss" on the top of my bald head. I was left in tears -- so grateful for this man whose skill and knowledge has allowed me to be sitting here today sharing with you. I told mom that they have truly been ministers of God for good in my life, and I have been so thankful for each and every one of my doctors, and their dedication.

I am supposed to receive platelets today. They have had a hard time locating them, because the Doctor wants them to be my exact (rare) type. I was just updated that they will be here around 4 a.m. I am expecting my iron to possibly be low eights or even seven tomorrow, so if you don't hear from me for a few days, it is because I am bone weary. One of my dear friends told me I've fought hard, and now is the time to rest. So tonight I pray for rest, and for all of you.

9 comments:

Diane said...

Amy, I rejoice in your victory in this battle, but I know the war isn't won yet. You still have many battles ahead. I pray as I type this that you are sleeping and resting well. I am a night owl so I try to visit and pray during the watch that so many people sleep. I pray your day goes well and that the platelets revive your strength. I pray for a good day on Friday and for your fevers to subside. May God's grace continue to be sufficient for your needs. I'm prayerfully expecting even more victories over this illness for you.

To God be the Glory, my friend. :-)

lizzyrita said...

HI Sweet Amy,
THANK YOU for your amazing testimony of God's work in your life! All praise to HIM for where you are today. As you have written, you do need to take all that comes day by day....I am praying for you and uplifting you before the throne of our Father. REST and find comfort in the arms of Jesus as you need to get well before you join your family at home.
"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the PEACE of God which surpasses all comprehension, shall guard your hearts and your minds in Christ Jesus." Phil. 4:6-7
I am praying these words for you....I do see thanksgiving in your attitude in the midst of your trial right now Amy...you are an instrument of GOD right now. Thank you for your love for Jesus and trust in His plan for you! ENJOY HIS perfect peace in your life today my friend!
Love IN HIM,
Liz

Anonymous said...

Dearest Amy, Thank you for the blogs you are writing. They are so helpful because you let us see your heart. We will be praying for you as you begin this new walk with Jesus in complete recover. He loves you and has a wonderful plan for your life. I receive that with you and your family. Test the spirits and know that they are from God. If you have peace you are being blessed of Him when your thoughts come. However, if they make you anxious tell the devil to go talk to Jesus. He doesn't like to do that so he will quit trying to dump on you for awhile. We all have to do this. I know I do with hurts that have come in my life. So I speak BLESSING on you and your family in the precious name of JESUS!!!!!! Continue to acknowlege HIm and He will direct your life. You are doing a good job of this. Love and Prayers, Marilyn and Joe Breshears

iamchanelle said...

May I encourage you to spend some time in John 16?
In this passage, Jesus is talking to His disciples about the time when He will be leaving them, and preparing them for the Spirit to come inhabit their hearts in his "absence". He gently redirects their focus from their suffering and the trials that will beset them when He leaves, and draws their hearts to the truth that knowing Him and knowing that He has overcome the world is more important than momentary afflictions.

He comforts us in our weakness, and provides the foundation for our strength: "I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart,

I have overcome the world. (John 16:33)

Find your rest and strength in His perfect strength today, sweetie.

shannon @ rocks in my dryer said...

Rest well. Praying for you.

Rachel Davis said...

Amy,
Thanks for the blog update. It's so wonderful to read, to see your spirit, and to discover new ways that God is working in you. (and through you, us)

I agree with the friend who encouraged you to rest after this fight. You have indeed struggled long and hard...and I wish you rest and relief that will sustain you through the remainder of the journey.

Anonymous said...

Amy,
I just emailed you, but then read the blog, so I wanted to email some information. I am taking CoQ 10 and L-Carnitine as heart protectants. Can you get any of that? The CoQ10 that I get is called "CoQ melt" and actually tastes pretty good...like orange. You dissolve it in your mouth. The L-Carnitine are pills. Also for iron there are vitamins called "Spirulina" you can get those or a multi-vitamin called "Super Mom" vitamins which have the Spirulina in them. These can be purchased online at www.beeyoutiful.com
Thank you so mcuh for your prayers for me during my difficult time and disappointing news. God is still good! Remember that always! He will not give us more than we can bear and keeps pouring out His grace on us as we draw near to Him and hold fast! Do not get caught up in statistics either, especially about chances of future children. God already knows how many and who each of your children will be. I have heard of many who have been told they would never be able to have more children, only to have God show His ultimate power and confound the predictions and statistics! Our God is all powerful and will always accomplish all of his holy will! Nothing can ever thwart His plans for our lives!
Love,
Gina Dunn

Barb said...

Try not to get discouraged, Amy. I know it's easy for me to say that, but remember the wonderful news you got. Remission! I know you still face a lot of battles most of us could never begin to imagine, but you're COVERED in prayer to help you get through it all.

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