First things first, I've lost all my hair.
We are now deep into stem cell collection. Having survived the chemo regime I was optimistic that I would breeze through stem cell collection and be offered a week or two break before the next phase starts. Such is not the case. Stem cell collection has proved more difficult than expected--due to the fact that I've had a previous transplant. Prior to my first transplant they harvested 20 million cells in one day, using 10 million for the transplant (a decision that has not been well received here, as they say you only need a minimum of 2 to 3 million for a transplant--but 4 to 5 million is preferred. So why was I given 10 million?) Anyway, my first 2 days of collection only yielded 1.4 million cells. So I became the lucky recipient of a new drug--mozibil--which was only approved by the FDA last month, after clinical trials here in Arkansas. It helps me to produce stem cells. That shot, too, goes in the gut and brings a few of the notorious chemo side effects (even though it is not chemotherapy). The drug costs......$20,000 a shot! I'm told insurance pays because the drug usually reduces the number of days on apheresis (stem cell collection). Anyway, they collected 1.8 million yesterday, bringing my total to 3.2 million. I'm limited to 4 shots, so I should be done by Tuesday and hopefully will be above 6 million in stem cells, which will probably be enough for the double transplant.
Life in Little Rock continues to be slow. I'm pretty exhausted so the pace is of no consequence to me. I think it must drive Susan crazy. We arrive at the clinic by 7 a.m., finish apheresis around noon, go home for a couple of hours and return to the infusion room, usually to get a transfusion of red cells or platelets, and 3 shots to the stomach. Susan and Julia alternate in taking me and sitting there as they do their work on me.
Oh, and then there is Julia's broken hand. While Suz and I were at the clinic this week and Julia was at the apartment she managed to break her hand. Yes, her hand. She claims she accidentally it on a chair. Whatever. She is now in a cast. Her trip back to Denver will be a bit of a challenge. Oh, and then there is the independent study she will be doing in Belize this month. She is upset at the inconvenience she will have traveling to Belize and trying to snorkel with a cast on. But, we can only laugh. And that seems to get us through.
The idea of spending months here in Little Rock is more than we can handle. So we take one day at a time. There are moments, there are days, and even weeks, when life is everything you could ever hope for. We dwell in those and allow the more difficult times to slip through and not grab us. The message we continually receive here is one of hope, from the patients and the nursing staff. They constantly tell us, "we don't give up." It is very humbling to have so many people committed to caring for you, for other patients and for the eradication of this disease. These people have huge hearts and they envelope us every day with care. We continue to be grateful for all the goodness we receive and we send our love to all of you.
Dan
Saturday, February 07, 2009
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3 comments:
Good morning! First of all PLEASE let us know if Julia needs anything when she returns to Denver!!
Again we are sending positive thoughts and all our love. The Seal Family
I guess I will welcome myself back to the blog. Being an old fart it has taken a few attempts to recall how to get postings on this blog. Hello Pattersons. Little Rock sure seems like a far away place. I know that I am frustrated by the distance and the ability to reach out and help with what needs to get done. I would imagine that there are many people who are feeling that way. I am heartened to see that the harvest is improving. Of course it should be at those prices. I think there is probably a book in all of this for you. I was also thinking that Susan could do a book. I have a title that I like and Susan is welcome to it, "Gourmet Cooking with Wal Mart and Susan." I know that you are in good hands. There are so many quiet heroes in this world. Love to you guys.
Dan,
I am thinking of you and your family often. I know this is a hard time, but as you said - it is humbling to have so many people caring for you. I found oncology nurses to be EXTREMELY wonderful people! I am sure you are in good hands.
If there is anything I can do to help, please let me know. I've been there and share your emotional and physical rollercoaster. I just wanted you to know I am thinking of you and keeping you and your family in my prayers.
Andrea Blanscet
ablanscet@coloradolawyers.com
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