Monday, May 25, 2009

Still not much to report. I'm still feeling good except I'm getting low grade fevers in the evenings. The doctors don't seem worried about it and have just told me to take tylenol to bring my temperature down. I'm still worried about them a little but Michael reminds me that I do not have a medical degree and therefore I need to listen to the doctors and not worry about it. Since there's not much to update you on I thought I would explain the transplant process in a little more detail.

I will probably be in the hospital 5-6 weeks. There will be one week of chemo/radiation to kill off my bone marrow then the transplant. The transplant just consists of them giving me the donor's bone marrow stem cells through a normal IV. Then the recovery period is about 30 days in the hospital (plus lots of time out of the hospital). During this time there is a risk of infection because my white blood cell count (the infection fighting cells) will be low from the chemo plus they will be giving me drugs to suppress my immune system so my body doesn't reject the donor's cells. The other risk during this time (and for a while after the transplant) is graft versus host disease (GvHD) which is basically the donor's cell fighting my body. The process of the donor's cells finding their way into my bones (called engraftment) will make me pretty sick (nausea/vomiting, mouth soars - a lot of the same side effects as chemo). After this is will take a long time (a year or more) for my immune system to build back up and for my energy level to be back to normal but I have lots of people to take care of me and help me during this time. So that is what I have coming up. It's a little daunting as it gets closer but at the same time I'm excited that this is the last big hurdle I have to get over. I hope this explanation makes sense and isn't too much medical info I just thought some of you guys might be interested.

Hope you all have a good Memorial Day!
Amy

13 comments:

  1. Happy Memorial Day to U 2!...U R so thoughtful and always think of others....I 2 am anxiously waiting your last hurdle...I just know you are in good hands!!!.....and today I was able to get one of your magnets....I have it right on my refrigator!...and trust me, I'm in there a lot.
    Hope you have a restful night and a bright day tomorrow....take care, Wanda & Jerry...:)

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  2. wow dude, a whole year. I know I commented previously by saying how much ass you're going to kick when this is all said and done, but I would like to reiterate the fact that no one will be able to hold a candle to what you are capable of handling.

    The downsides to your life in one year: feigning sympathy when people whine about their cold/allergies. The upside in one year: you may be able to take over the world. You are going to find strength in the path ahead that you had no idea you were capable of, esp on the days that seem like total doom. and the really awesome part is, this kind of strength doesn't atrophy.

    So yeah, keep in mind on the really bad days, the ones where you want to reach through whatever crappy daytime tv is on with a butcher knife and a chainsaw - and youre actually incapable and unwilling out of sheer misery to find another channel or activity to make the minutes on the clock go a little faster - and some vacous model starts whining about having indoor *and* outdoor allergies, and she may have just pushed you over the edge - and you cant really reach into the tv to deservingly hack off her limbs....remember that it gets better eventually. and eventually in a few years, this will be just another era of your life, where you are going to look back and be like, man that part of my life sucked. and you'll do something really trivial like fold laundry and cook dinner. and you will take it for granted, which will in and of itself be perfect.

    hm. maybe this should be a private note, seeing as i am now writing you a novel. my take home message is - don't loose sight of the fact that hard times come to an end, and this will impact your future more positivley then will seem possible right now. Oh, we are neighbors btw, I'm right over in Chapel Hill if you ever want a backgammon/scrabble/someone to talk your ear off buddy. Let me know =) lmccoig@gmail.com

    Lisa

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  3. Amy, I know you are totally aware of what is ahead. It just makes me feel so badly for you. This is an ugly part of your life and I absolutely hate it.
    If you were writing your autobiography, this part would be in early years. You have so many many more years to live. You have laughs to laugh, whispers to whisper, and hugs and kisses to give and receive. I feel sure of it.
    We just need to find the tools to get you through these tough chapters. Prayer, family, and friends are the best tools I know of so far. I think about you all the time. You have such a fabulous support team. I feel you are in the best hands. Take it one day at a time.
    Thinking great thoughts to send your way.
    Maryanne

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  5. Amy, you go girl! You have it all down pat and know exactly what to expect. You are going to do so well, it'll knock their pants off! I have no doubt this phase of the process will go just as good for you as it has up to now, including the fevers; they are normal for this process. Just keep that laptop with you so you can stay in touch with us, we'll be waiting to hear from you. Your supporters all know what a trooper you are and we all love you. Hang in there, and I definitely WILL be down to help take care of you and maybe do some cooking later. I love you, Grandma

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  6. I've always preferred to know exactly what to expect so I can face life head on, prepared and ready. And it does help. But through the years I've learned that the unexpected turns and bumps in the road are just as navigable by faith in God. So you have great information, the best medical care, a solid faith, and the love, support and prayers of a terrific family and a whole host of friends and your hometown community. Seems like you're ready to tackle and beat this thing! I do love you, ya know! And I'm daily lifting you up in prayer. (Also praying for your family, and even your doctors.)

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  7. P. S. Listen to Michael's advice. Words from the wise!!!

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  8. Amy I'm glad you are getting out and able to go for walks, shopping, and to the movies! It's way better than the basic cable you get in the hospital :) I'm sure your dad told you what a success the bake sale was! People are amazing, and there are a ton of people supporting you and your recovery! Remember that God loves you, and so do alot of other people. I continue to keep you and your family in my thoughts and prayers on a daily basis. Please let me know if there is anything I can do for you :) Love & prayers!
    Tonie

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  9. Amy,
    I am now getting very concerned. YOUR GRANDMA is talking about knocking people's pants off. Please invite me.
    All my love and prayers to you,
    Sherry

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  10. Ooops! There I go causing a panic. Miss Sherry wants to be in on "knocking their pants off", so I think it would be safer to just "knock their socks off". And, Sherry, you ARE invited, to that and anything else, cause we love ya!
    Love ya Amy & Michael.
    Grandma

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  11. We would like to get in on the deal too, we will help knock socks or pants off, whatever you want to do!! They don't want to mess too much with you and all your supporters. Hope you are having a good day, tell Mom hello for us too. Hope your reports are good and you have some fun plans the rest of the week. we love you and are praying for everything to go well. love ya, genie and eddie

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  12. Hey Amy,
    The day is almost over and everything has calmed down and you are on my mind. For all of us who love you and care about you so much, it is not easy at all to think about any discomfort you may be experiencing these next few days. We would all take that away from you if we could. The GOOD RESULTS are what we must focus on. I will keep you close in thought and prayer these next days and look forward to your being happy and healthy again and feeling great. I am planning on visiting you, along with your Grandmother, soon after the transplant and when you are feeling up to it. Won't stay long, just want to see you. I love you, Aunt Robbie

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  13. Amy: I haven't written in a while, but please know I have been praying for you. I know you are facing a long road to wellness, but keep thinking towards that goal. I pray you have total success in the bone marrow transplant, and that the side effects will be minimal, if not non-existant! I'm also praying for the rest of your family, particularly your mom and dad. You may not remember but I went to school with them; your mom and I were good friends. Tell them I said to take care of themselves, too! May God continue to watch over you, and may he give you complete healing. Take good care.

    Tricia Terrell Patterson

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