It is so nice to be home again. My doctors gave me a gift of a photo the day I left and the entire team signed it on the back. Such a touching gift! Even more so the ability to be home. It is a sobering thing when a doctor tells you he is glad you are going home because there were a few days they weren't sure I would be. This last round of chemo hit me really hard, and I am grateful to the Lord for bringing me through it. I don't express the extent of sickness in my blog posts, mainly because I don't post when I'm sick. I don't do anything when I'm at my worst, and days go by that I don't even remember afterward.
Friday at Barnes was exhausting, but productive. My brother, Daniel (17), is my marrow donor. I ended up with four perfect matches (I know I am blessed in this) but he is the oldest, so they chose him. Between the two of us we had several different lung and heart tests done, and about 30 vials of blood drawn. I also had a bone marrow biopsy. I believe it was number six since July and I am very, very weary of them. This particular one is lingering in pain to the point that I filled my synthetic morphine prescription to hopefully aid in the pain that Tylenol is not touching. I am also still in a lot of pain from the placement of my new "Hickman." Technically it isn't a Hickman, but it is so similar to my last one that I am calling it such. Anyway, back to Barnes, I'll be going in for transplant within the next month. I see Dr. Westervelt again on Friday and we will go from there. I need to put some weight on and we also need to wait for insurance approval for what is about a half million dollar procedure, thus the delay. My brother will receive Neupogen shots for a few days and then they will harvest the marrow using what one of my doctors referred to as a "cream separator" on day five. The same days he is receiving shots I will be receiving two days of radiation, and two days of a rather intense form of chemo. Both cause infertility, so I have been dealing with a lot of emotions. I am trying to constantly remember that God has us, and this is all within His plan. My husband got a new CD the other day by a band he likes, Stavesacre, and one of the lines from a song stood out to me:
I'm not looking for a reason to believe. I do. I breathe, that's enough for me.
That's how I've felt the past months. Just a deep trust that God has us, even though there are days when my faith is weak. I will admit I'm scared of what is coming up. I had to sign off on a very detailed consent form for the transplant, and it isn't going to be easy. Knowing how sick I will be, having just been there, is so hard. Knowing I could die, or knowing there are things worse than death, such as severe GVHD, are really hard to deal with. Oh, I know there will be grace for it, but right now I am scared, and I am just really, really wanting all of this behind me.
I am so, so thankful for my brother and his willingness to sacrifice for me. It is an amazing thing to think that I will basically be him by the end of the year -- his DNA running through my blood. I am blessed to live in a time when we have these options, when I have a chance to live. When I have a chance to possibly be "cured" to the extent that leukemia can be cured. We're also blessed to live in a time in which harvesting marrow is a rather simple procedure. It used to involve a bone marrow biopsy in which the patient was put completely under anesthesia and marrow was aspirated about 80-100 times. Having had about 3-4 aspirations per biopsy personally, if you weren't under all the way, I think it would kill you. The worst of it for him will be the 4-6 hour harvesting procedure, and possibly the Neupogen shots. I've been on Neupogen for about three weeks now, but he will be receiving a much higher dose, and it does have some painful side effects. (Bone pain, headaches, etc.) In fact, they sent me home with a seven day dose of shots which Brandon has been giving me each day. This has certainly been an exercise of trust with our marriage as we learn even more about the "in sickness and health" portion of our vows. How thankful I am for him, though, and I admit some of his sticks have been better than the nurses.
I'll probably update again after Friday's visit to Barnes, once I know more about when I will be admitted, etc. I've been told to expect a 3-4 week stay in the hospital and then I may be in hospital housing for a while afterwards. They like to keep you close for 100 days, due to the high rate of GVHD.
Thank you, once again, for your prayers for us. Blessings to you all, Amy