Friday, August 18, 2006

Home & Barnes

I finally have enough energy today to attempt a post. I don't know why, but being home leaves one feeling much more drained than being in the hospital, I guess it's just the environment. Coming home after such an extensive stay was somewhat traumatic. As much as I longed to be home and have a night of sleep in my own bed with my family, no 4 a.m. vital checks and blood draws, I actually told my husband Tuesday morning in the midst of my tears that I wanted to go back to the hospital because "it was easier and food just appeared and everyone just took care of me." Not that I am not being cared for at home...my sisters have stayed to help me care for Gary. Brandon has been back to work -- throughout all of this he has not missed a day. Not that he's a workaholic, he's new to his job and doesn't have any sick or vacation leave until he's been employed for six months. God has blessed and worked it out so that every day I have needed him (bone marrow biopsies, leaving the hospital, etc) has been a scheduled day off due to working several weekends lately. He's leaving tomorrow for a four day business trip and I'm finding the idea of coping without him quite difficult, but my mom is coming to help care for me, so we'll make it. Thankfully this has been the first job in which insurance has been effective from day one. God certainly went ahead for us in that regard, and provided us with some excellent coverage to boot, though a nurse from the insurance company called today to remind me of my two million dollar lifetime limit which I suppose I am somewhat quickly approaching. She was calling regarding a bone marrow transplant specifically, and I found out a little more about what costs are involved with those.

I have never been so wiped out in my life. I couldn't walk for days after my baby was born, and thought that was the most wiped out I would ever be, but this has brought me to the utter and complete end of self. I spent the first few days home crying and blubbering like a baby, having a total and complete pity party. I found myself dealing with everything I'd just been putting off for six weeks. My husband reminded me that I was also void of all emotion-suppressing drugs, so I guess it just all caught up with me. They took me off all meds the weekend I left, and sent me home with absolutely nothing. I've found that waking up every day can be misery if I focus on all I am not, all that I used to be, and the fact that my baby doesn't know me as mother anymore, etc, but I can also focus on the fact that I am alive, that six weeks ago we didn't know if I would be, that my baby has the chance to get to know me again, that I am not just a name he is told about someday. So the past few days have been full of lessons for me, as I learn once again to praise my God for the gifts, not blame Him for what I feel are the losses. Once again I have to realize that it's one day at a time, that I'm right where I'm supposed to be, that He is sovereign and I'm not going anywhere until He is done with me. I should think by now that I could live without fear, having stared death in the face more than once, but still I have to give my fears to Him daily.

Especially hard right now is the unknown in my near future. I have an appointment with Barnes in St. Louis next Friday at 1:30 p.m. with their transplant team. My oncologist went from saying one day that he's pretty sure they will just tell me to go home and live my life to "you're 25, and it would be a cure, you might as well." I also have no idea what is in my future if I don't have a transplant and just have follow-up care. No one has told me if I'll have consolidation chemo treatments. I think overall they are just not quite sure what to do with me yet. I'm 25 and have AML. People my age don't get AML to begin with. I have yet to hear of anyone who is 100% clear after two chemo treatments. That just doesn't happen. My doctors have never come out and said I'm a miracle, but when I have commented on the number of people praying for me they have said, "Well, obviously prayer works." So I am unusual, I am a sign of God's hand -- the result of your prayers. I am learning once again to just trust my Savior.

It is my goal to write everyone once I being feeling stronger. I have so much I want to say, so many thanks to give to all of you. By the way, we're not entirely sure what is happening with the mail I was receiving from the hospital. My husband stopped by the mail room and talked to them one day (one clerk told him in 24 years they have never known anyone to receive so much mail and I had my own bucket in the mail room). He was told that all my mail would be returned to sender, but I have received several forwarded letters. I think any packages that I was aware of were received prior to my leaving, for those of you who may be wondering. A thousand thanks to you and I intend a more personal note soon. How you have all blessed my heart!

Prayer requests at this time would be for health. I have the immune system of a newborn, basically, and still need to stay away from sick people, crowds, etc. Also that the Lord would prepare us for our appointment with Barnes and the information we will be given there. Thank you all!

26 comments:

Anonymous said...

Dear Sister Amy,

It is good to hear from you. It is impossible to understand the adjustments you are dealing with but you have been strengthened to deal with many in the past weeks. May the Lord of Glory continue to meet your needs by His matchless grace.

We think of you and your family many times a day and we continue to remember you all in prayer.

Thanks for keeping us posted.

Love to you all,
Don, Lilan, and Family

Susanne said...

Amy: Continueing to pray for you and will continue until this is seen thru and you are in full health!

Meam said...

Amy, I just read your blog. Don't worry about your mixed emotional feelings. When we have such strength in God, we tend to forget, that we are only human.

Please let me pass along to you a quote from Lou Holtz: "Life is ten per cent what happens to you and ninety per cent how you respond to it". You my dear, have responded like few others!

Now we give thanks to God for your strength in him. Thanks that he has given you the perfect life, perfect husband & son, and pefect family & friends to help you on your life's path. For this we say thank you, thank you, thank you. Love, Meam.

Anonymous said...

Dear Amy, I was glad to read your note today. I can imagine the adjustment you've gone through since you have come home. Our LOrd will see you through the times ahead as He has promised. He encourages us to take one day at a time and I can certianly see the wisdom from that. He has brought you so far and He will not leave you now. Your testimony has been such a blessing to all who read the blog. Thanks again for being so honest and transparent. We will be praying for your next Friday as you meet with the staff at Barnes. Blessings on you and the whole family. Joe and Marilyn in Texas

Anonymous said...

Dear Amy,

I first heard of your illness through the Hayden News in the Dixon Pilot. We immediately began praying for you and for your family. We have identified with you in so many ways. I have a daughter that is 27 and has a 22 month old daughter. So I think of all the emotional struggles you have gone through in that area. I think of your husband, as we also have a son whose wife suffered a devasting miscarriage, ruptured ovary and major surgery last August, but praise the Lord, they are now expecting a baby boy in January. I also think of and pray for your mother; how difficult this has been for her to see her own baby go through such physical, emotional, and spiritual trials. Yet, I am sure that she has trusted our Lord to be there to strengthen, heal, and guide you through these dark times.

We praise our Lord and Saviour for your healing at this time and trust that He will continue to keep you in His hand as He directs your path. We will particularly pray for your strength and healing as you seek continued care at Barnes and Ellis Fischel. Right now we give thanks that you are at home and be assured that your baby does remember his mother and will bring you joy unspeakable in the days ahead.

We will continue to pray for you and your family.

Kathy Brandt
Dixon

Anonymous said...

Hi Amy - I grew up with Doug and Kerry Lane - have known Brandon since he was a baby! I went through a kidney transplant 3 years ago this week and Erlene, Harla and your two brothers in law were there in the pre op room before the transplant. You are so blessed to have such a wonderful family!! The reason I'm writing is to let you know that even though we've had different medical treatments, leukemia and kidney disease patients go through very similar things - the loss of your immune system, weight loss, the sickness the transfusions, etc. I will be on immunosuppressants the rest of my life... But here's what I want you to know: I know you're exhausted now, you've fought a hard battle. Your strength will come back and you'll feel like a new person. Part of the exhaustion is coming home and mentally being "in charge" of your life again. The truth is, you were always in control, you just had some assistance for awhile!! I know coming home and trying to keep healthy while building an immune system is also scary, but of all my friends, family and coworkers who have all been sick multiple times in the last 3 years since my transplant, "I" have not been sick once. Not ONE TIME! You can do this - you are a miracle and as long as you know that, nothing will keep you down! I'm so happy for you and Brandon and little Gary.

All my best always,
Lisa Hughes

Amy in AZ said...

Hi Amy,

Still praying for you and checking in for updates. I will try to pray harder that your find peace in your new circumstance at home--

With Love,
Amy in AZ

Brenda said...

You are still being prayed for daily, and I will continue to do so.

Andrea said...

Still praying for you...and your family. Thanks for the update!

Anonymous said...

Amy, Thank you for sharing with us once more. We have not let up in our praying for you. I know how hard some of the decisions are but God will give you guidance. May you have His peace that passeth all understanding as you face the days ahead. God's blessings on each of you. We love you dearly, Grandpa and Grandma Linda

Diane said...

We haven't forgotten you just because you're out of the hospital, Amy. We're still praying for you. May you improve daily and be completely healed.

Paulette said...

Hello Amy,
It is 12:10 here in Texas and I came by to pray for you tonight. I can so relate to the emotional upheavals right now.
When I had my open heart surgery the year I turned 40, I was at great risk to not survive it. When I came home I could not believe how I plumeted emotionally. I was told that any traumatic procedure can really make you question everything.
The one thing we dont question is God's Soverign will for our lives. He is in control. and he will bring you back to full healing.
Your body has been run over by a mack truck so do not be hard on yourself. Baby steps Amy, and rest in Jesus.
When you think you are alone, your not . We are still with you.

MugwumpMom said...

Congratulations on getting home. And yes, I recall when my mom, who also had AML, came home, she was on an emotional rollercoaster for days. It's to be expected. God understands; continue to take it all to Him, no holds barred. He's huge and can take it.
You remain in my prayers; may you have a clear understanding of His will concerning all the decisions you need to make relative to transplants and such.
Blessings
Rena

Lisa said...

Amy - you are still inour thoughts and prayers!
Lisa

Dawn said...

I thought of this possibility as I thought of you going home - the excitement of finally being out of the hospital is replaced by the reality of being "on your own" again. I've never been in your shoes, but can imagine that going from having constant care (too much seemingly) to having to function without that help must be a huge adjustment. And having your husband leave on a business trip must be scary as well. Thank the Lord your mom is there. I know your little guy will adjust soon also. Blessings! Keep us posted and let us know as your strength returns.

Christy in TN said...

My heart aches for you as you go through this transition, thinking especially of your son getting to know you all over again.

Longing to encourage you - the Lord tenderly holds you as His Beloved.

Behold, we count them happy which endure. Ye have heard of the patience of Job, and have seen the end of the Lord; that the Lord is very pitiful, and of tender mercy.
- James 5:11

So the LORD blessed the latter end of Job more than his beginning.
- Job 42:12

Abby Ymker said...

Amy,
I was glad to read your update and I will keep praying for you! I pray that through this all he would open things to you and bring you closer to him.
Love, Abby

Christina said...

I check your blog quite frequently to see how you are doing and am glad to hear you are home. Don't worry about longing for the hospital, I think it's just all the emotions you go through that have to come out somewhere. Just try to take it easy and give yourself a break. I hope you are going to be fne and live a long life. I know God is the one with a hand in it and all the prayers you are receiving must be helping. I don't care how many people have or have not been cured, I am faithful that God will make sure he does the right thing. I hope that means answer all our prayers and cure you. You know it's ok to feel overwhelmed just like you might on any given day. I feel this way sometimes and I am just your average SAHM. You are human and are going to go through depression, happiness, longing, and every other emotion out there weather you are sick or not. I hope the best for you and keep us posted, but only when you are feeling up to it. Hugs Christina

Monica C. said...

Praying for you and your mind, body and spirit. God bless,

Rachel Davis said...

Well, if I had some original piece of comfort or encouragement, then I would say it. But everyone here has pretty much said all that is in my heart.

Love you, praying for you, and am so incredibly proud of you.

Rachel

Rachel said...

Hi Amy!
I can't imagine the transition you are going through right now. I know it must be hard. I am continuing to pray for you! Praise God for all he has done for you! To God be ALL the Glory!

Rachel Bennett

Anonymous said...

Amy, I believe you go to Barnes tomorrow. I will pray the Lord goes before you and gives wisdom,strenght and peace tko you and all who minister to you. Bles you in the precious name of Jesus.Joe and Marilyn in Texas

Anonymous said...

Dear Amy,
I am just writing in case you did not get the email I wrote. I just wanted to tell you how relieved, overjoyed, and thankful I am to hear you are home and cancer free. God is so good!! I will continue to pray for you. much love, alea

Ps. I hope you got the package I sent. :)

Lawauna said...

I am so glad that you are home now. I haven't checked your blog in awhile but I have prayed for you daily.
God Bless,

Lawauna

Marge said...

Amy, If you choose bone marrow transplant, I want you to know about a wonderful woman here in Columbia (a minister's wife) who went through BMT last winter and writes us regularly. If you are interested in communicating with her, I'm sure she will be happy to write to you on emails or through this site, or anyway you'd like.

We sent all the materials to Barnes and we too await the transplant meeting with hopeful hearts.
Marge, Nurse Clinician, and the 5 East Nurses and Staff

April said...

Amy,

I came across your blog through one which I can no longer recall. Yours has stuck in my thoughts ever since. I have prayed for you and will continue to pray for the generous grace of our Lord to be spilled upon you and your family. You are truly and inspiration and an example of pure faith.

I will wait upon the Lord for you and continue to lift you up, believing on Him to heal, restore, and strengthen you and yours.

April