It was nice to talk to Marty. The first thing he said was that he'd missed us. I just thought that was really nice. I was on the call with Andy, Susanne, and Amal. They all felt very positive after the call. I'm going to take their word for it. Marty thinks the drug I'm taking now (the invaginating love drug) is a good one. He wants me to extend it to two ten-day courses in 28 days.
He also would like to find a hospital in London that would transplant me at above a 5% blast level. He didn't want me to have to "schlepp" to New York. But if that's not feasible, he would do it at Sloan. But I've got to get to a 12% level first. So, as I proceed to these two rounds of Azacitidine, I have to stay cool somehow. Will it work? Will it not? Lord let it work, please.
After, we all stayed on the phone and decided to call my other old doctor, Panos. He immediately picks up like he always does and we barraged him with questions out of the blue. Poor guy. We'll see him this weekend to talk more but he said he is very interested in something they're doing in Germany called LAMPSA. It seems hard-hitting but it gets people to transplant.
Then I talked to a friend of a friend of a friend. A German guy who's had THREE transplants. Holy cow! But his last one was in 2005 and he's doing well.
I am still very strong. But I am so sick of Chemo. I'll do it, but, my poor body! How can I detox from this? Is it really possible to detox? I've read tons on it, but still, I wonder. I'd like to see a double-blind study on a detox, like a juicing program or a macrobiotic program. I'm worried about my liver because of how harsh the Mylotarg is. It's fine now, but after more chemo, it can be a concern. That's what Marty said.
Honestly, I am so disappointed in my doctor here in London. He made me, us, feel so absolutely terrible. He watched us cry our eyes out in his office and said nothing except that I had three to six months to wrap up my affairs. Horrendous bedside manner considering there ARE options for me. What a fool. Protecting his own ass. If they transplanted me and it didn't work, it would look bad for his stats. His stats are more important than my life. He should pack it in. Take his shingle off his door.
I pray to stay positive. I pray to stay in the moment. I pray to enjoy each day as it comes and not let this fucking disease wreck that. All days are precious. No matter what.
All my love,
Dina
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