Thursday, April 06, 2006
What Comes Next
Things have been relatively quiet this week, and Jenny and I have been busy researching on all sorts of medical topics. Fortunately for me, my company kindly supplied me with a new laptop and wireless which has allowed me to surf away from the comfort of my lazy boy chair. What a life – internet access, cable TV and a lazy boy! Many thanks to Marc, Doug and Ryan for getting me hooked up.
We’ve made some progress in determining a course of action for chemotherapy. The protocol we will likely pursue is called AIM, which stands for Adriamycin, Ifosfamide, and Mesna, the 3 drugs that make up the protocol. Adriamycin is also commonly called Doxorubicin. Because the AIM protocol involves infusions over 3 days every 3 weeks, we have decided to look into getting treatment at Fox Chase Cancer Center in Philadelphia, near my parents. This would be much easier (logistically, anyway) than getting the treatment in NYC. Fox Chase has a sarcoma team, and Dr D’Adamo had recommended an oncologist there named Dr von Mehren. I am still waiting to hear about an appointment there, but I’m hoping to see her the week of April 17th. Fox Chase also routinely participates in Clinical Trials for sarcoma, so we should have other options available to us as time goes by.
I am still on the schedule for my radiation treatment this coming Monday. Jenny and I will be leaving early Monday am and plan on staying in Bayonne on Monday night. We’ll head home Tuesday and I am hoping the short term side effects are not too painful.
One of my favorite authors in recent years has been Stephen Jay Gould, a prolific author of essays on natural history. I enjoy his choice of subjects and his clear, logical style of writing. I didn’t know it until this week, but Gould was a 20-year cancer survivor until his death in 2002 at the age of 60. I stumbled across a short essay of his about statistics and cancer survival that I found very comforting. It reaffirmed for me the importance of a positive attitude and the dangers of getting caught up in survival statistics. You can read his essay here.
Jenny and I appreciate everyone’s continued support. The kids are doing well, and I’ll try to get some more pictures posted.
We’ve made some progress in determining a course of action for chemotherapy. The protocol we will likely pursue is called AIM, which stands for Adriamycin, Ifosfamide, and Mesna, the 3 drugs that make up the protocol. Adriamycin is also commonly called Doxorubicin. Because the AIM protocol involves infusions over 3 days every 3 weeks, we have decided to look into getting treatment at Fox Chase Cancer Center in Philadelphia, near my parents. This would be much easier (logistically, anyway) than getting the treatment in NYC. Fox Chase has a sarcoma team, and Dr D’Adamo had recommended an oncologist there named Dr von Mehren. I am still waiting to hear about an appointment there, but I’m hoping to see her the week of April 17th. Fox Chase also routinely participates in Clinical Trials for sarcoma, so we should have other options available to us as time goes by.
I am still on the schedule for my radiation treatment this coming Monday. Jenny and I will be leaving early Monday am and plan on staying in Bayonne on Monday night. We’ll head home Tuesday and I am hoping the short term side effects are not too painful.
One of my favorite authors in recent years has been Stephen Jay Gould, a prolific author of essays on natural history. I enjoy his choice of subjects and his clear, logical style of writing. I didn’t know it until this week, but Gould was a 20-year cancer survivor until his death in 2002 at the age of 60. I stumbled across a short essay of his about statistics and cancer survival that I found very comforting. It reaffirmed for me the importance of a positive attitude and the dangers of getting caught up in survival statistics. You can read his essay here.
Jenny and I appreciate everyone’s continued support. The kids are doing well, and I’ll try to get some more pictures posted.
# posted by Seth Edmondson @ 1:48 PM 
Comments:
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Seth,
Hang in there man. Liz and I have been thinking about you, Jenny, and the kids a lot since I found your blog.
Sorry for being out of touch for so long, I want to shoot you a good email this weekend after this hectic week is done. So look for that if you will.
Thinking of you,
Fetus
Hang in there man. Liz and I have been thinking about you, Jenny, and the kids a lot since I found your blog.
Sorry for being out of touch for so long, I want to shoot you a good email this weekend after this hectic week is done. So look for that if you will.
Thinking of you,
Fetus
# posted by 
: 11:40 PM
: 11:40 PM
Any word from Rob and Dad. Hope the mechanics come back with all their fingers.
# posted by : 8:57 PM
: 8:57 PM
Hey Ellis --
I spoke with Rob and Dad today. They are enjoying the bicycle maintenance class tremendously and are having a great time in Oregon. They each have their bikes with them and are getting lots of hands-on time.
Dad comes home Sunday, I think.
I spoke with Rob and Dad today. They are enjoying the bicycle maintenance class tremendously and are having a great time in Oregon. They each have their bikes with them and are getting lots of hands-on time.
Dad comes home Sunday, I think.
So good to read your updates and the positive results of the surgery. Thanks for sharing that info. I never took you for the tattoo type! Are the kids asking if they can play connect-the-dots on Daddy?
I had a book recommendation for you; a laugh-out-loud book (or so I've been told) - 'Lamb: The Gospel According to Biff, Christ's Childhood Pal' by Christopher Moore - until I attempted to read the essay by Gould. His comments about So Cal (the paradise in which Jenny and I formed our friendship and ate her first burger)...ouch. Well, I still stand by my recommendation of 'Lamb' if you are in the mood for something very light and mindless.
We'll be thinking of you Monday, praying the side effects are minimal, and looking forward to your next Blog. Safe travels. God bless.
Love and lots of prayers,
Melanie and family
I had a book recommendation for you; a laugh-out-loud book (or so I've been told) - 'Lamb: The Gospel According to Biff, Christ's Childhood Pal' by Christopher Moore - until I attempted to read the essay by Gould. His comments about So Cal (the paradise in which Jenny and I formed our friendship and ate her first burger)...ouch. Well, I still stand by my recommendation of 'Lamb' if you are in the mood for something very light and mindless.
We'll be thinking of you Monday, praying the side effects are minimal, and looking forward to your next Blog. Safe travels. God bless.
Love and lots of prayers,
Melanie and family
# posted by : 2:50 PM
: 2:50 PM
Seth-
Meant to call you tonight to wish you luck tomorrow. I will be thinking of you and will call you later in the week to see how you did. Thanks for recommending the Gould essay. This is exactly why quoting detailed statistics to patients is not meaningful (would anyone play Powerball if they considered the statistics?). Keep it up. Good luck tomorrow. Kurt
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Meant to call you tonight to wish you luck tomorrow. I will be thinking of you and will call you later in the week to see how you did. Thanks for recommending the Gould essay. This is exactly why quoting detailed statistics to patients is not meaningful (would anyone play Powerball if they considered the statistics?). Keep it up. Good luck tomorrow. Kurt
# posted by : 11:42 PM
: 11:42 PM << Home
