From watchful waiting to complete reevaluation has been the focus of the last 2 weeks, very intense thinking.
It started with a visit to Dana Farber, DFCC, right here in my back yard. I need a cancer home for treatment and scanning.
My visited with Dr. Stephan Hodi, another top doc in melanoma. http://news.harvard.edu/
It began with a call before the visit to add a visit with another doc: Andrea Ng
http://connects.catalyst.
a radiation oncologist. Why? I wonder. I thought radiation doesn’t work with melanoma.
Katie told me I needed someone to go with me, and I did. I was dumbstruck when Dr. Hodi offered me a clinical trial that included interferon as an option. Interferon is a year of feeling ill, with not a great chance of success, but the other 2 arms of the clinical trial were with the new drug “Ipi”. http://en.wikipedia.org/wiki/
I didn’t even know to ask "why a low dose and a higher dose". He also wanted to “have the conversation” about surgery on the toe. Thus, an appointment with Sara Russell, DFCC surgeon was scheduled
He noted my stunned look, and told me I had many options and all are right: waiting with scans, radiation, more surgery, and a clinical trial.
Yikes, I thought I had decided!
Lou Fazen was with me for Dr. Ng appointment. She was persuasive making a case for radiation, in my case, where there may be microscopic disease in the groin. She was very impressive. Carefully outlining why I should consider this option.
She followed up immediately getting me an appt back at UMass with Dr. Shirin Sioshansi http://physicians.
The next day Lou went to the surgery consult. In my case, usually the whole toe is removed. Dr. Lambert took half and a revision has always been a consideration. But where Dr. Russell offered a redo, Dr. Ng offered a superficial radiation treatment called brachytherapy. That is radiation around the outside of the toe and I don’t have to do the rehab and loss of function/ balance.
Oh, how to decide, I talked to Elizabeth, Katie Jane, my sister, Drs. Lynn and Lou, my friends Judy and Pat from the lake, Dr. Lucy Marion, my old boss, Jean Raas Moore, nurse and friend from Georgetown. Looking at all the options, some more Medline researching, and my emotional reaction to each...the gut check.
Current decision: no surgery, yes to radiation.
He noted my stunned look, and told me I had many options and all are right: waiting with scans, radiation, more surgery, and a clinical trial.
Yikes, I thought I had decided!
Lou Fazen was with me for Dr. Ng appointment. She was persuasive making a case for radiation, in my case, where there may be microscopic disease in the groin. She was very impressive. Carefully outlining why I should consider this option.
She followed up immediately getting me an appt back at UMass with Dr. Shirin Sioshansi http://physicians.
The next day Lou went to the surgery consult. In my case, usually the whole toe is removed. Dr. Lambert took half and a revision has always been a consideration. But where Dr. Russell offered a redo, Dr. Ng offered a superficial radiation treatment called brachytherapy. That is radiation around the outside of the toe and I don’t have to do the rehab and loss of function/ balance.
Oh, how to decide, I talked to Elizabeth, Katie Jane, my sister, Drs. Lynn and Lou, my friends Judy and Pat from the lake, Dr. Lucy Marion, my old boss, Jean Raas Moore, nurse and friend from Georgetown. Looking at all the options, some more Medline researching, and my emotional reaction to each...the gut check.
Current decision: no surgery, yes to radiation.
It will begin in April, but the plan is to still get me to the Ben and Amanda's wedding in Cancun at the end of April.
The scanning recommended by Chapman will be in the plan. But not until at least 3-4 months after the last surgery (1/26), sometime in April or May, but I don’t know if radiation changes that.
A great visit from Porter, Chris and Trina offered a true high point. Kevin, Carol and Bob visited with Trina’s folks...many pics are on shutterfly becknoyes, or trina's facebook
http://becknoyes.shutterfly.
The scanning recommended by Chapman will be in the plan. But not until at least 3-4 months after the last surgery (1/26), sometime in April or May, but I don’t know if radiation changes that.
A great visit from Porter, Chris and Trina offered a true high point. Kevin, Carol and Bob visited with Trina’s folks...many pics are on shutterfly becknoyes, or trina's facebook
http://becknoyes.shutterfly.
Visits to Klem’s and Old Sturbridge Village and family fun.
It was hard to let my Portercillan go at the airport.
I have so many memories that keep me sustained
A Crossword Puzzle book from Margie
Flowers from the Newcombs
The Morelli family saying goodbye to the family patriarch
A beer refrig from the Nielsens
Words of encouragement from Anna facing her own trial with MS
Phone calls and emails and sustaining words, meals, friendship visits
Africa memories book from Kim and Mike
Thank you Lake and Farm Team.
Meg
Flowers from the Newcombs
The Morelli family saying goodbye to the family patriarch
A beer refrig from the Nielsens
Words of encouragement from Anna facing her own trial with MS
Phone calls and emails and sustaining words, meals, friendship visits
Africa memories book from Kim and Mike
Thank you Lake and Farm Team.
Meg
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