Graft vs. Host

You may be wondering why I have to be here in Seattle for the first 100 days. It’s not that the recovery from the chemotherapy and radiation takes that long, but to watch and deal with graft vs. host disease (GVHD). After 100 days it’s expected that th…

Boring

We learned a fascinating bit of information last week. My blood type will be changing from my own original type, O+, to my donor’s type. Also, my blood DNA will be different than the rest of my body, and yes, it’s already been the basis of a CSI story,…

DAY 91

jUST A SHORT UPDATE. iT’S DAY NINETY ONE AND I AM FEELING PRETTY GOOD. I WENT TO MY ONCOLOGIST YESTERDAY FOR WHAT I THOUGHT WOULD BE A THIRD INJECTION FOR MY ANEMIA BUT I WAS TOLD BY THE NURSE I DID NOT NEED IT SO I AM VASTLY IMPROVING. i WILL GO ON AP…

Best ever

I had a phrase I said a lot when our son Gene was a baby, "best baby ever." In remembering that, I thought when I came to Seattle that I would try to be the "best patient ever." Positive messages are good, although not a panacea, or else I wouldn’t have gotten cancer to begin with, since my motto was always, "I don’t get sick."So it was without too much surprise to find out this week some

Appreciating my Caregiver

Role reversal isn’t always comfortable, especially for a role that has taken on a life-saving significance. I’ve been my own caregiver ever since day one and I found they were cutting on my genitals*. Obviously, as well as I could then think, I could t…

State Champs!

The Pee Wee Warriors won the state championship in the Tier II A division!Gene is the star goalie in the lower right, with the white pads.Congratulations to the whole team, and many thanks for a lot of work to the coaches, managers, and parent voluntee…

SUSAN’S JOURNEY WITH MYELOMA 2007-03-13 14:58:00

HI EVERYONE,I WENT TO MY REGULAR ONCOLOGIST TODAY AND GOT A SHOT OF ARANESP–ITS WORKS THE SAME AS PROCRIT. i HAD SOME BAD BONE PAIN WITH THE PROCIRT SO THEY GAVE ARANESP THIS TIME. THE PROCRIT HAS DONE ITS JOB BECAUSE MY ANEMIA IS NOT AS BAD. SO MAYBE…

DAY 68

Hi Everyone,
It’s hard to believe it’s day 68–but here is. I am doing fairly okay. I did get my first injection of procrit about a week and a half ago–however i experienced some bone pain with it. Some of the nurses say it is normal and some of them say it is not so here i am again wondering which is true-however i indeed did get bone pain in my hips and lower part of my legs below the knee and my feet. I am just taking ibuprofen for the pain. But i have 2 more injections to go. Has anyone out there experienced bone pain with procrit? I have been feeling a bit unsteady on my feet and kinda like i have some sort of infection in my inner ear i think. But on the other hand i am growing some hair–not enough to feel comfortable without a hat yet but i am hoping that will be soon. My hair has come back sorta a salt & pepper look. WEll i see how long i can stand that. I am 48 but i don’t want to look 60 but maybe i will like it after all.
Well thats all to report for now. Will keep you posted. Susan

On schedule

The transplant schedule has stayed the same since last week, it all begins next Monday. The answer to the question "has the donor confirmed" was "yes," so I’m very happy about that. I’ve been trying to think what it must be like for a young man to do this. He must have a very strong sense of community, and a good relationship with his parents, since I would be about their age or more. It’s a fine