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…