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

Top of the Docs
Katie, Elizabeth and I met Paul Chapman at the MSCKK yesterday and made the Chicago connection. He went to med school at University of Chicago and “Kathryn Edmiston was my intern”, a year behind him. She is the Breast Center head at UMass and my doc since my 2005 lumpectomy. Her recommendation was “the standard” interferon treatment that involved one year of feeling awful. That is typical for a non-melanoma center’s recommendation, as I found out.

As one of the leaders in the field and maybe the leader at the leading center, his recommendation was monitor for melanoma activity progression using CT and/or MRI every 3 months to see if it recurs – and where it recurs. Then treat with more effective medications than the standard interferon when and if it recurs. Wouldn’t it be wonderful if it never recurred!

He had a vaccine trial but did not recommend it. There may be an upcoming trial that will start this spring that may be appropriate. He discussed where my cancer home would be, and thought Dana Farber would be closer and he is good friends with Stephan Hodi and thought he would want the scans done at “Harvard”.
While scanning every 3 months in NYC is no problem, if and when a trial and / or treatment is necessary, the drugs could be administered in Boston. The drugs that are more effective are only for Stage 4 and it would be a stretch to come to NYC for treatment.

What a relief, someone recommending something that makes sense. The trials with interferon were not great, but that’s all there was, until this last year.

Hey, I’m free to be me, for a while at least, look for me on your doorstep to see if you can come out and play, as I continue to travel and expound on left wing radical thinking.

Sidebar, Chapman was impressed that we lunched at Jojo’s. When he commented on the cost, I relayed that the lunch $28 was a bargain for the 3 courses. Thank you college roomie, Margaret Breed for the treat and fun at lunch. I always recommend a top spot for food while visiting the top docs. Ah, the sauces, ah, the subtlety, ah, the décor, ahhhhhhh good food.

Bless you Dr. Chapman for clear recommendations that I can live with for a while.
Ej wants to make an immediate appt. with Dr Hodi.
http://doctors.dana-farber.org/directory/profile.asp?pict_id=0000263

Happy Valentine’s Day to the Farm team
Meg

The staging is complete

The result of the last surgery is complete.There were 18 nodes removed and 2 were positive for melanoma.

Added to the three sentinel nodes that were removed at the time of the original surgery, the

total node count is 21 in the superficial groin. 5 are positive.

I am Stage 3 c

So the staging is finally complete and the oncologists have all the info they need

to make recommendations. Next appt Monday for that.

I hope the surgeon's magic fingers swept it all out, but

if not then interferon will get any of little buggers that may be left.

I also found out that the turmor is BRAF+ which means I can be helped by some of the new drugs.

I feel more optimistic

and as Elizabeth said

"Hey it's just 2 more, you can beat that"

Couldn't agree more.

The staging is complete

The result of the last surgery is complete.

There were 18 nodes removed and 2 were positive for melanoma.

Added to the three sentinel nodes that were removed at the time of the original surgery, the

total node count is 21 in the superficial groin. 5 are positive.

I am Stage 3 c

So the staging is finally complete and the oncologists have all the info they need

to make recommendations. Next appt Monday for that.

I hope the surgeon's magic fingers swept it all out, but

if not then interferon will get any of little buggers that may be left.

I also found out that the turmor is BRAF+ which means I can be helped by some of the new drugs.

I feel more optimistic

and as Elizabeth said

"Hey it's just 2 more, you can beat that"

Couldn't agree more.

What a difference a few days and being pain free makes

The real story is one of pain that had nothing to do with either operation.
Well, except I walked on the side of my left foot (one with toe amp) because I needed my special boot disinfected with bleach. I am paranoid about germs and hospital germs in particular.
I didn't want those hospital floor germs in my bed.
My floor germs are okay, but not the hospital floor. I just don't trust hospital germs.

The result was that on Saturday evening I got up from bed and nearly fell over from pain at one spot near my inner ankle...I was taking some powerful opiates and yet I was having 10 out of 10 whenever I took a step...I could put a finger on the tender spot of bone muscle and tendon...but I couldn't get it to stop. Any flexion or rolling the foot to a flat position, killed.
So my funky walking on the side of my foot now created a new, major pain problem.
Massage, capsasin (pepper cream) and KT’s massage and stretch released the shortened muscle/tendon irritation over the last few days. Pain free and able to walk as of Monday afternoon. My sympathy to victims of plantar fasciitis. That must be what it was like. You need to keep the muscle stretched (especially when sleeping) to stop the pain.

Whew
On to new and better things
Tops:

• Getting emails, phone calls, texts, cards, and Facebook xo's from the farm/ lake team.
• Visit from Skip and Judy to install the under ice listening lake device...so I can hear the ice sounds...lacking at this point.
• Brother Bob visit brings Elaine’s meatballs. She is the only real Italian in the Manning/Noyes clan. And they were yummy. Being a real Italian, she couldn't come because it was one of her days with her widowed 95+ yr. old father, For almost 10 years, the 6 daughters have cared for their father, mostly in his home, but more recently in the nursing home. They remain his constant companions and caregivers. Amazing women. All of you in the Manning’s appreciate Elaine‘s wicked sense of style and humor. She and John Stone have been our stand up comics for years.
• Lynn and Lou brought a Japanese dinner augmented by seared ahi and asparagus from the Nielsen’s! Where does one luck into friends like this! Lynn and Lou are returning to her job in Beirut. Two of her most brilliant med students were accepted to Harvard for specialty rotations, a real coup! When she's around just watch the good things happen. And they took top honors in duplicate bridge.
• Bill Seabourne experimented, quite successfully with a down Maine recipe for chicken casserole from Captain Greenlaw. She was the captain of the boat that didn't go down in the Perfect Storm and reality TV captain of a long line swordfishing boat. I have followed her writings and now to taste the food from her little spot of heaven in Maine... thank you Seabourne’s http://www.lindagreenlawbooks.com/
• Peter Levine called from the QQLA to compare notes on his similar hospital experiences and to note how wonderful it is to have KT allowed having a residency experience in melanoma.
• Millers have a new granddaughter, Jennifer birthed Josephine JANE!

Cards

• Aunt Lois conveyed the care and concern only my mother’s sister could. What a nurse caretaker.
• Cousin Sharon Berkner said she speaks to the God of Mercy re my health and does it frequently. Couldn’t have anyone say it better or to the right power.
• Alternate son, Michael Wolaver's hysterical Horton Hears a Who card hit a sweet spot.
• And a long note from Marci Dubois a Noyes cousin. Thank you for reconnecting.

All had me in tears

What’s next:
Thursday 2/2 appt to hear path report of nodes
Monday 2/6 first hematology/ oncology visit to clarify mortality odds and treatments recommendation.
Monday 2/13 Mem Sloan Kettering Cancer Center (MSKCC) visit to top genetics doc Paul Chapman for the second opinion...anything out there that might be better than standard therapy?
Month of Feb. Time to heal
Month of Mar. Most likely recommendation will be interferon treatments 5x/week. A daily IV that makes you feel like you have the flu, likely side effects: fatigue, muscle aches, depression...the yuks.
Month of April: Probably self-administered interferon treatment. Sub cutaneous 3x /week. More yuks.
Just what one can figure out from reading medical literature, talking to KT, friends, and KT’s med school friends.

Feeling a lot better,

Meg Mom Gaga

relief is having the kafkaesque stop

POD#2

Thank you KT for being the naughty child and writing an update.

Yes, it is good to be home, with the healing lake view out my bedroom window, and everything doesn't hurt so much as yesterday. What a miserable day, until KT came to spring me from the joint. I hate idiocy and that's what I saw a lot of from one floor nurse and one young aide.

I dislike it if one argues with my personal realities. I gave the RN a reasonable explanation, twice, for refusing Zofran. my nausea is probably from low blood pressure, she would counter "I offered you Zofran and you refused". Well, that's a fine medication for post op nausea caused by drugs of anesthesia but if it caused by hypotension (82/52) the correct answer is to put me back to bed. Or give me fluids which were out of reach. The aide confirmed my low BP by taking it twice and then took the BP machine out of the room and left me moaning. Guess she wasn't interested if it got lower. When KT gave the RN my feedback (I hate to complain when I'm sick) she came back to argue....and take my discharge BP to confirm it wasn't low anymore. Anyway, I survived but was not impressed by the duo's care performance. Anyone who argues with another's perception of illness hasn't figured out rule no #1.

Then there were the minor annoyances that were major to me...the bed computer broke so i had to stand waiting to get back to bed while 2 aids tried to fix the bed. They never did, but the time standing was forever. It was stuck in the lowest position flat. I had to flex maximally to sit...not the easiest since the surgery was in the groin and i couldn't have the foot of the bed raised....all this to prevent swelling in the leg and groin caused by removal of the nodes. Then there was the toilet paper bar not put on solidly and watching the tp roll just out of reach with my first venture to the toilet.

Let's leave the ugly for

The best of the day:

• the med student,
• Dr Laura Lambert's explanation of how Lynn's brother, Dr. Ken Eckhert changed her life from German scholar to noted cancer surgeon http://www.telegram.com/article/20100129/NEWS/1290496/1116
• a single room,
• the housekeeping staff, he gave me a newspaper and the supervisor asked me if things were to my satisfaction (wow)
• hearing lynn and lou were tops in duplicate bridge
• figuring out i was going to survive idiots
• kt rescuing me
• hospital room with a view
• hearing that QQLA meeting went well and the website will be better
• all the messages, emails and phone calls from friends near and far but all very dear.

Looking forward to my first shower.

and viewing the world from a much better frame of mind,

Meg

I have co-opted the computer and am writing a quick update for everyone! - KN

POD (post-op day) #1

Mom Noyes is back at the lake!

And the post-surgery recovery begins.

Today was definitely a less fun day than her relatively charmed surgery day yesterday. I guess a good RN/NP is a relatively tough judge of good nursing care, but also very willing to shower appreciation when it is done well. She absolutely loved her PACU nurse that was with her until 9 pm last night. She raved about Umass & the care she had gotten. When the 3rd year medical student came to do his post-op check, he remarked "I think you're doing better than any other patient I've seen today." He was chatty & professional, with dark circles under his eyes, just like every good med student on their surgery rotation should have. Mom gave him some teaching on a more systematic heart exam in exchange for his care.

I left the hospital at 11 pm after she had been brought up to the 6th floor. Apparently, her care was less than stellar today. She had a green nursing assistant who left her in a chair, hypotensive & nauseous, and the nursing call button out of arm's reach. Oops!

I found her RN when I arrived, pointed out the obvious, and told her I would be taking her home right away. We visited Mary Stone (just 1 floor up!) on the way out, and had a smooth ride home.

She is much better now that she's in her own bedroom. Her TV remote, books on tape, phone, & computer are all within an arms reach. She's definitely well-connected!

She was content with tea, toast, & oranges for dinner. She takes care of her own drain (at her wound site), and can hobble to the bathroom on her own.

Her fiestyness should make for a good recovery.

For most mortals, resigning oneself to bed can be quite a downer. And as you know, Mom likes to be engaged. So, in no particular order, she likes cheerful company, phone calls, emails, pictures, anything funny, and fresh flowers. Homemade soup is good too! (I'll work on that tomorrow).

Lots of love,

Katie

Disclaimer: I wrote this without the blog owner's permission. I'm still a naughty child.

Life changes after melanoma stage 3

So what’s the update

I’m feeling the love and attention.

It seems the whole family pitched in to make sure I got everything I need. Mike gave me a car to get me to the OR on time. Sara gave me her room, Kevin visited, and Mary Kate got me my favorite anti-cancer treat (cinnamon donuts from Dippin’ Donuts). Mary supervised my first baths and dressings and got me home after some hilarious incidents caused by Ativan. It made me truly looped for the entire day after the nuclear tracing injections. I forgot to be NPO after midnight because I woke up at 12:30 am with a graham cracker in my mouth… and ate it. I had a low threshold of inhibition & then has to ‘fess up to anesthesia. They gave me a spinal instead of general. I promise to be better.

Elizabeth took over for 2 weekends and was very attentive making sure I got coffee and my special toast from Rose32, my favorite bakery.

I am improving from the toe amp. I had my first day without any pain medication on Jan. 19. I am walking easily sometimes with a cane. During my last visit to the surgeon, Laura Lambert (google her to find out her creds), 2 old time nurses & I impressed the young doc with our ancient tales.

Katie came from CA to do an elective on melanoma for 3 weeks until Feb. 8. She has been answering her own questions and talking to classmates, and will explain all my options so I can be ready for the oncologists. We can hopefully get her a few days in derm clinic at UMass.

So the plan is for surgery on Thursday, Jan 27: a superficial left groin lymph node dissection. A lot of nodes will be removed and tested to further stage the melanoma.

Staging determines treatment options.

After the surgery, I will have drains in my groin and be sent home for a month of recovery, trying to keep the drain clean and dry with the aid of diaper gel dressings. I may be on crutches again, short term.

I have 2 follow up appointments scheduled with oncology. The first opinion is with Kathryn Edmiston scheduled for 2 weeks after surgery UMass. The second opinion is one week after the surgery. Yes, typical backass style. I’m seeing Paul Chapman, one of the dream team members at Memorial Sloan Kettering Cancer Center. (MSKCC). I just hope at one-week post op, I’m somewhat mobile.

Whatever is the consensus will hopefully be started at UMass somewhere around Mar 1. KT says I’m to receive immunotherapy rather than chemotherapy. The goal is to stimulate my immune system to attack cancer cells. My lymphocytes are being lazy, or the melanoma is smart. Immunotherapy is no cakewalk…it makes you feel like you have perpetual flu with muscle aches, fatigue, depression and the yucks. Yuck.

For fun, KY and I are going to NYC to see Book of Mormon and staying at Karen Eckhert’s studio. She is out on the west coast being a new Grammy. Karen is Lynn’s sister from Buffalo, and we have been to NYC for shows and museums. We can hopefully see the new American Wing at the Met and go to MoMA. Then back on Wednesday, and NPO after midnight for surgery the next day, if I can remember.

Fun things in my life, not in any order:

• Winner at duplicate bridge yesterday w/partner Pat Seabourne.
• 2 weekend visits by EJ to get me home to the lake and laugh.
• EJ cleaning up my piles of stuff….what a switch!
• Skyping with Porter weekly. What a boost he is with typical 20 month old antics.
• Celebration of Stage 3 (not 4) dinner with stories of Lou and guns.
• Plans to listen to ice noises with the underwater microphone from Skip and Judy Nielsen
• Laughing at the Colbert and Stewart election antics.
• Putting my car off my driveway into the trees after not making it up the hill with the recent snow.
• John Stone, jailer, getting me up and going with coffee and oatmeal every day, setting quotas of soccer ball production and making me use the crutches.
• Sara’s Stone’s basketball games
• Mary Stone’s (my sister) dinners, medication supervision, running UMass central, and being there.
• Messages, visits, and help from all my lake friends. I know they are there for me.

This weekend I’m expecting a visit from a Burundi Jesuit priest. Heis getting a PhD at BC in Human Rights & Social Justice. We met on the plane to Rwanda. The Patriots-Ravens game will be on. Lou and Lynn may visit, and Kevin and Carol, too.

All the emails and phone calls from friends, near and dear and now renewed are a boost.

I am smiling lots , enjoying each minute, and finding all the black humor I can.

Meg

http://www.mskcc.org/news/announcement/msk-researchers-appointed-stand-melanoma-dream-team

Thanks to Kt for making sentences complete and erasing most of my elipses…