Good news update

It was Mar 18 when I last updated the teams. First the highlights then details if you want them. 

I finished radiation treatment, had the Cancun family wedding, Mother’s Day with Elizabeth, visited NOLA and Porter, and i'm having fun with a Community Garden

Many of you have called and emailed to make sure I’m staying positive and ask about THE SCAN.

Good news as of this AM.  The PET/CT whole body scan:  no new disease.

BUT: there may be disease and the test just does not detect it.    Always the disclaimer.   But this is the best test we have!  

I am elated but also realistic. Melanoma is sneaky,  but I hope for long-term disease free period.   Eating well, exercise and social networking are areas that may help and I'm working on it.

The month of April was sobering as I had groin radiation.  Radiation oncologists agreed the benefit was worth the risk.  My doc reiterated it again today as she told me the results today saying she was less concerned about the groin since I have completed the zapping.

Sometimes it was 2x/day treatment to get them all in before going to Mexico.  The doc thought she was crazy for “letting” me get on a plane 24 hrs. after a double session, but she had to reassure herself,  it was “Meg” and that I would handle it.

The radiation was a mental game.  Staying positive, and believing I was not going to have all the uglies that may occur.   A little tired, a little wound breakdown, red skin, and the groin chafing of fragile skin.  But I HAD to climb the a Mayan pyramid.

A little swelling continues and I now wear a stocking to keep it down, and see a lymphedema specialist who puts tape all over my thighs, just like the real athletes.   All the MDs I see are very interested in it.

Cancun for my nephew Ben’s wedding to Amanda was wonderful.  Ben is the son of my brother John and Kari of Spokane and is a policeman in Arlington, VA.  Cancun Moon Palace was a delightful all-inclusive gathering spot complete with ruins, fabulous food, spa treatments and lots of family gathering.

My sister Jane and I were roomies and explorers to Tulum and El Coba.  Wonderful tours but the climb to the top of the Maya pyramid was a highlight.

Elizabeth came for Mother’s Day and took me to L’Espalier, probably the top restaurant in Boston for a special brunch, complete with champagne, fois gras, and lobster benedict with chef-made English muffin.  Then shoe shopping and Newbery St.  A very special day with calls from everyone.

  

Then there was Porterville for Porter booster.  The pics are on the shutterfly site if you really want to see lots of me and porter.  I will try to post a video of the streetcar ride,  his swim lesson, and the train garden complete with squeals of delight.

http://becknoyes.shutterfly.com/

Wedding Party.   Kari's mom on far left

From L  JD, prego niece Meredith, Bro John, Groom Ben, Kari Mom

Looking up   You only come by once.....climb!

It is a steep way down!

Family on an adventure

Excitement of riding the rails

Tape pattern....pretty--   I know, TMI.

t

Sent by email March 18 2012


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/gazette/story/2011/06/increasing-odds-for-survival/
It began with a call before the visit to add a visit with another doc: Andrea Ng
http://connects.catalyst.harvard.edu/profiles/profile/person/32771
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/Ipilimumab

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.umassmemorial.org/directory/profile.asp?dbase=main&setsize=10&view=ummc&specialty=103&pict_id=2255

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.com/#%26emid%3dsite_weeklydigest%26cid%3dSHARE3SXXXX

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