Tuesday, December 16, 2008
Appointments & Donor Letter
I visited the City of Hope today. It turned out to be a long day. First was my lab appointment, then my appointment with Dr. Nakamura, then a follow up appointment with the endocrinologist.
My counts are stable:
WBC 3.3 (norm 4.0-11.0)
RBC 4.0 (norm 3.8 - 5.2)
HGB 13.1 (11.5-15.5)
PLT 89 (150-350)
I saw the endocrinologist for follow up. A few months ago they repeated the bone density scan. Just from one year ago, it seems my bone density has decreased up to 10% in my back and hip. They are pushing the calcium/Vitamin D regimen and are giving me one more chance to take it as directed. At the next appointment, if there's still a decrease they are going to prescribe prophylactic calcium (something like Fosamax.) They also performed an ultrasound of my thyroid gland. They are watching a few nodules and are throwing around words that I don't even want to think about right now. So, I won't even go there.
I've been so busy preparing for the holidays (as you all have, as well). For the first time in years, my cards didn't get mailed the first week in December. I hope to have them mailed by this Friday! But, the tree is up, the lights are on the house and most of the gifts have been purchased and wrapped. I'm not a bah-humbug kind of gal. I enjoy the hustle and bustle. I enjoy being in search for the perfect gift. I enjoy all the preparation and also enjoy the parties! I enjoy being in the crowds (although, I'm still suppose to watch my exposure...ooops) I think I enjoy it because I'm grateful to be alive. I even enjoyed cooking a turkey at Thanksgiving... in fact, since Costco had fresh turkeys at half price after Thanksgiving, I roasted another one a few days later. Call me crazy and call me obsessive-compulsive, I call it enjoying life!
Some time ago, I found out that because my donor is from Japan, I have one chance to send a letter to her. The letter has to be totally anonymous meaning it can't have any identifying information; no names, addresses, phone numbers or email addresses. (Thank you Chris Gregory for trying to encourage me to write the letter with a secret message embedded in it. As much as I wanted to have contact with her, I decided since I only get one shot, I didn't want to jeopardize the letters being confiscated before delivery) So, being 2.5 years post-transplant, mom and I decided to send the letters now. She wrote one and I wrote one and they are being delivered together. The ladies in the MUD (Matching Unrelated Donors) Unit at the City of Hope, told us today that sending the letters now was better than two weeks post-transplant, because anything can happen in the first few years. As of now, my donor doesn't know whether I lived or died! She'll know what a fantastic thing she did when she gets the letters.
I thank all of you for continuing to follow my status through my blog. I feel blessed to have made it through another year. It was a little rough as several of my friends didn't make through 2008. We have to be appreciative of life and be thankful for each and every day.
Wishing you all a Merry Christmas! May God richly bless you and yours in 2009!
love you all,
nancy
My counts are stable:
WBC 3.3 (norm 4.0-11.0)
RBC 4.0 (norm 3.8 - 5.2)
HGB 13.1 (11.5-15.5)
PLT 89 (150-350)
I saw the endocrinologist for follow up. A few months ago they repeated the bone density scan. Just from one year ago, it seems my bone density has decreased up to 10% in my back and hip. They are pushing the calcium/Vitamin D regimen and are giving me one more chance to take it as directed. At the next appointment, if there's still a decrease they are going to prescribe prophylactic calcium (something like Fosamax.) They also performed an ultrasound of my thyroid gland. They are watching a few nodules and are throwing around words that I don't even want to think about right now. So, I won't even go there.
I've been so busy preparing for the holidays (as you all have, as well). For the first time in years, my cards didn't get mailed the first week in December. I hope to have them mailed by this Friday! But, the tree is up, the lights are on the house and most of the gifts have been purchased and wrapped. I'm not a bah-humbug kind of gal. I enjoy the hustle and bustle. I enjoy being in search for the perfect gift. I enjoy all the preparation and also enjoy the parties! I enjoy being in the crowds (although, I'm still suppose to watch my exposure...ooops) I think I enjoy it because I'm grateful to be alive. I even enjoyed cooking a turkey at Thanksgiving... in fact, since Costco had fresh turkeys at half price after Thanksgiving, I roasted another one a few days later. Call me crazy and call me obsessive-compulsive, I call it enjoying life!
Some time ago, I found out that because my donor is from Japan, I have one chance to send a letter to her. The letter has to be totally anonymous meaning it can't have any identifying information; no names, addresses, phone numbers or email addresses. (Thank you Chris Gregory for trying to encourage me to write the letter with a secret message embedded in it. As much as I wanted to have contact with her, I decided since I only get one shot, I didn't want to jeopardize the letters being confiscated before delivery) So, being 2.5 years post-transplant, mom and I decided to send the letters now. She wrote one and I wrote one and they are being delivered together. The ladies in the MUD (Matching Unrelated Donors) Unit at the City of Hope, told us today that sending the letters now was better than two weeks post-transplant, because anything can happen in the first few years. As of now, my donor doesn't know whether I lived or died! She'll know what a fantastic thing she did when she gets the letters.
I thank all of you for continuing to follow my status through my blog. I feel blessed to have made it through another year. It was a little rough as several of my friends didn't make through 2008. We have to be appreciative of life and be thankful for each and every day.
Wishing you all a Merry Christmas! May God richly bless you and yours in 2009!
love you all,
nancy
Comments:
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I know I'm very thankful for knowing you and so happy that you came into our lives.
However, I am jealous that you managed to get your Christmas cards out and your counts are so fabulous. You've got me there. :)
Love you,
Ann
However, I am jealous that you managed to get your Christmas cards out and your counts are so fabulous. You've got me there. :)
Love you,
Ann
Now you're making me feel guilty. The cards aren't out and the Christmas tree isn't up, but I have been going to a lot of parties. That's my excuse.
How exciting to have made contact with your donor.
How exciting to have made contact with your donor.
PS That's a bummer about your bone density. Are you feeling any symptoms? Does osteosporosis run in your family (my mom had it) or do they think it's a side effect of chemo or steroids?
Hi Susan, they say it's definitely a side effect... chemo, steroids, anti-rejection drugs... take your pick... I haven't heard from you, how's your EOS counts?
BTW, parties are a good thing. Everything else can wait! Enjoy!!!
love, n
BTW, parties are a good thing. Everything else can wait! Enjoy!!!
love, n
hi nancy...
you're such a trooper and go getter...you're amazing!!!
your donor will be happy to know that she helped save your life...
because she saved your life we have had the opportunity to talk with you about the city of hope
and are grateful you highly recommended them to us...you are ultimately saving jaimee's life and others with all that you do...
thank you for being such a good friend and advocate...
love,
jodee
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you're such a trooper and go getter...you're amazing!!!
your donor will be happy to know that she helped save your life...
because she saved your life we have had the opportunity to talk with you about the city of hope
and are grateful you highly recommended them to us...you are ultimately saving jaimee's life and others with all that you do...
thank you for being such a good friend and advocate...
love,
jodee
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