Two very positive things happen today to brighten my outlook tremendously. First on the drive to and from Portland, I listened to tapes (from 10 years ago) of Bernie Segal reading from and talking about the ideas in his book "Love, Medicine, and Miracles". I am so glad I did as it just reinforced that all of the things that I am doing on this journey is what he describes as an exceptional patient.
It also made me realize that in spite of my prognosis, the universe has aligned to put me in the right place with the right people at the right time. My appointment with the radiation oncologist is just one example. I don't have the space to give his whole story, but suffice it to say that this man had a vision of combining immunotherapy and radiation therapy that most of his colleagues thought was crazy (and still don't believe his results). Because he moved over to Providence Cancer Center when it was built, he was given a chance to pursue his research. He has just finished a stage I study with 12 patients (also 10 additional) and has had amazing results enhancing the effectiveness of IL-2 therapy. I don't fit his protocol, but he was willing to take me on and try it. At the least, it will give me some relief from the pressure of the growing tumors. At the most, it will allow this therapy to work much more effectively. Even those patients who had the radiation, but did not respond to or had to quit the IL-2 are alive two years later. Also, I would not have been recommended to Dr Seung if I had not been referred to Dr. Lufkin for the BRAF study.
Also, how many doctors enter the room, sit down like they don't have another patient all day and ask you to tell them about yourself..what you do, what are your hobbies, what is your support system...and finally what is your cancer story. Dr. Seung spent over 45 minutes with me and then managed to work me into his very busy treatment schedule.
I also had a wonderful evening with Dash last night, playing and reading. Dash loves poetry. Anyone have a good recommendation for a poetry book for children that isn't the common rhyming poetry?
I'm not so good on non-rhyming poetry, but I was so steeped in the Winnie-the-Pooh poems that I have to mention them. I also liked (pause while I go do research) ... Bill Peet, some of whose works rhyme and some don't. And because Carey and I remembered it so fondly, especially for the author's ability to capture the sound of rain, just a few years ago I bought a used copy of 'Umbrella,' by Taro Yashima ("Momo eagerly waits for a rainy day so she can use the red boots and umbrella she received on her third birthday.") He isn't old enough for Silverstein's 'Sidewalk,' is he? Jean
ReplyDelete