When suffering does not destroy you, even though you have been to the edge of the abyss, you know something that you cannot know in any other way. Someone else is sustaining you. You are indeed living by a life not your own. Or as I love to say, "Your life is not about you." It is henceforth, most truly, about God. And you are merely "free sample" of what God has always been doing. - Quote from Richard Rohr

May 15, 2007

Sleeping, Flaking and a new adventure

Some of you may be wondering what have I been doing since I retired on March 30th? Well, sleeping a lot. I usually don't get up before 11 am! Then I either wash a load of clothes or clean the kitchen and take a nap around 4pm. I have no idea how I worked the last 2 years. Ok, no comments please!

On my last appt. with Dr. Duvic, she really expressed how unhappy she is with the way I'm responding to the BXC1777 drug study. So I decided to try a new drug study... LBH589B. One thing this new drug is suppose to do is stop the ITCHING!

Before I actually start taking the drug, I must first be off any chemo for 30 days. So I took my last BCX1777 April 22nd. So far the only changes I can tell is my skin is really, really dry. I wake up in the morning with dry flaky skin all over my body. It doesn't matter how much lotion I put on, in an hour I'm very dry again. And of course the itching. Once I start itching I can't stop. It feels so GOOD to scratch! This itching is different than ever before. I feel like I have to scratch deep into my skin, to get into the inside of my lymph nodes. Since it the stupid lymphoma that causes the itching!

On May 6 and 7, I will go to Houston for tests. I will have a full body/neck/head CT scan, another bone marrow biopsy (which I decided this time to be put under sedation) and probably a couple of skin biopsies. In addition to all that I will have an echogram done. I think that's the correct term. This new drug can mess up your heart.

On May 21st when I take my first dose of the drug, I will have an echo done every 6 minutes. Yep, you read correctly. I think I have 10 of them done. I will be in Houston that entire week. I have Thursday off however from having to do tests! Fortunately, the drug company is paying for our hotel. Then after that week, I have to go to Houston every Monday and Wednesday for the month of June and then every Monday for as long as I'm on the drug . If anyone wants a day away from Austin, I'd love the company!

As I look at all this, I'm beginning to see that maybe a bone marrow transplant may not be all that bad! However, Dr. Duvic told me that two people had been put in total remission on this new drug, so I'm praying that will happen to me and the BMT will not be an issue.
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