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!