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Update on (lack of) health #2870893
07/20/19 10:58 AM
07/20/19 10:58 AM
Joined: Aug 2005
Posts: 18,356
Lexington, Kentucky
Monica K. Offline OP

Platinum Supporter until Dec 31 2012
Monica K.  Offline OP

Platinum Supporter until Dec 31 2012

Yikes! 10000 Post Club Member

Joined: Aug 2005
Posts: 18,356
Lexington, Kentucky
Some of you already know this from Facebook or PMs, but I wanted to give y'all an update on my adventures with esophageal cancer. In the thread I just linked, I explained that the standard treatment protocol was simultaneous chemotherapy and radiation therapy, and then assuming the cancer had not spread while that was going on, an esophagectomy.

I had the chemo and radiation in May and June, and hoo boy, those were NOT fun times. I had an allergic reaction to the first chemo regimen they tried and had to switch to a different one. And the chemo/radiation just wiped me out... no energy to do anything, every bad side effect under the sun, felt crappy all the time, etc. etc.

On July 11th I had a post-treatment PET scan, and that scan was promising, suggesting no metastasis and even that the tumor had shrunk substantially. So I was scheduled for the esophagectomy for this past Monday, and my family and I went into the surgery feeling quite upbeat and confident that I had a good chance of beating this cancer. Unfortunately, once my surgeon opened me up, he discovered that the tumor had advanced to the chest wall near the spine and penetrated the lung. Given where it was located against the spine, it could not be removed, and so there was no point in doing the esophagectomy.

Needless to say, this was devastating news, and a review of my remaining options was equally discouraging. My team (radiation oncologist, chemo oncologist, surgeon) were in consensus that any further chemotherapy would at best just buy me a little more time, and I have no interest in pursuing time for time's sake, especially if that time is spent being miserable from chemo side effects. We discussed targeted immunotherapy, but again it was clear that would only buy me time (if it worked at all, and the odds of success were very low) rather than being curative, and the side effects of the immunotherapy are pretty gruesome. Not to mention that it takes 3-4 months of immunotherapy before it starts really having any positive effects at all, and my team was not sure I have that much time left.

In short, I have decided to decline further treatment efforts on the reasoning that I prioritize quality over quantity of time, and I would vastly prefer to spend the limited time I have left building memories with my loved ones, instead of being miserable and in pain from chemo/immunotherapy. I have enrolled in Hospice and am already impressed by how compassionate and efficient they are in their care--they had a nurse at my house within hours of my discharge from the hospital. My main priority is my comfort and pain control, and they are doing a great job of helping me in those concerns. (And here I will give an enthusiastic two thumbs up for fentanyl patches! laugh )

My team could not give me a very precise estimate of how much time I have left. This is completely understandable (everybody is different) although also frustrating, and my situation is apparently especially complicated. Based on the typical progression of people with tumors my size and spread, I could have as much as 6-9 months. But part of the tumor is also very close to my aorta, and if it decides to move in that direction, well, it could be bad news within a matter of weeks.

As for the immediate future, well, I am going to concentrate on my family. I also have an Einaudi piece that's about 75% worked up that I am going to try to record for the upcoming quarterly recital. Extending and finishing my streak at #55 seems like a good bucket list item. smile Piano and music continue to be sources of great comfort and reward to me, as are friends. This past week has been a whirlwind of emotions, and I have been overwhelmed and touched by how many people, including those from this forum, have reached out to me and my family. I may not have the time/energy to respond individually to messages or emails you send me, but I read and appreciate each and every one. heart

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Re: Update on (lack of) health [Re: Monica K.] #2870894
07/20/19 11:09 AM
07/20/19 11:09 AM
Joined: Feb 2019
Posts: 948
Sheffield, UK
K
KevinM Offline
500 Post Club Member
KevinM  Offline
500 Post Club Member
K

Joined: Feb 2019
Posts: 948
Sheffield, UK
I'm so sorry. It does sound from what you say you are very clear on what you want for yourself and that is what you are going for. I will look out for your recording in the recital.


Mendelssohn Song without Words Op19,2 and 19,6, Jensen Sehnsucht Op8,5. Chopin Nocturne C# Minor. Schumann Hasche Mann from Kinderszenen Op15,3. https://soundcloud.com/sheffieldkevin
DP: Kawai MP11SE. HP: Superlux HD681 EVO
Re: Update on (lack of) health [Re: Monica K.] #2870895
07/20/19 11:11 AM
07/20/19 11:11 AM
Joined: Jul 2012
Posts: 616
Greater Chicago Metro Area
E
EPW Online content
500 Post Club Member
EPW  Online Content
500 Post Club Member
E

Joined: Jul 2012
Posts: 616
Greater Chicago Metro Area
Sorry to hear the news Monica. Prayers for you and your family.


All these years playing and I still consider myself a novice.
Re: Update on (lack of) health [Re: Monica K.] #2870898
07/20/19 11:16 AM
07/20/19 11:16 AM
Joined: Nov 2009
Posts: 3,438
UK
S
spanishbuddha Online content
3000 Post Club Member
spanishbuddha  Online Content
3000 Post Club Member
S

Joined: Nov 2009
Posts: 3,438
UK
Thank you for your past and future presence on the forum. So sad to hear your news cry (Another Einaudi fan).

Re: Update on (lack of) health [Re: Monica K.] #2870899
07/20/19 11:16 AM
07/20/19 11:16 AM
Joined: Jun 2018
Posts: 856
Sweden
Animisha Online content
500 Post Club Member
Animisha  Online Content
500 Post Club Member

Joined: Jun 2018
Posts: 856
Sweden
Monica, such a sad message. I wish you courage and strength and peace, and anything else you may need.


Playing the piano is learning to create, playfully and deeply seriously, our own music in the world.
*
... feeling like the pianist on the Titanic ...
Re: Update on (lack of) health [Re: Monica K.] #2870904
07/20/19 11:34 AM
07/20/19 11:34 AM
Joined: Apr 2018
Posts: 7,782
Tyrone Slothrop Online content
Tyrone Slothrop  Online Content

7000 Post Club Member

Joined: Apr 2018
Posts: 7,782
This is extremely sad news as you have been a beating heart of this forum and have given all of us your energy and enthusiasm.

I wish you comfort, peace, and the love of your family.

I will look forward to your Einaudi piece in Recital #55.


across the stone, deathless piano performances

"Discipline is more reliable than motivation." -by a contributor on Reddit r/piano
"Success is 10% inspiration, and 90% perspiration." -by some other wise person
"Pianoteq manages to keep it all together yet simultaneously also go in all directions; like a quantum particle entangled with an unknown and spooky parallel universe simply waiting to be discovered." -by Pete14
Re: Update on (lack of) health [Re: Monica K.] #2870911
07/20/19 11:49 AM
07/20/19 11:49 AM
Joined: Jan 2018
Posts: 3,148
In the Ozarks of Missouri
NobleHouse Online content
3000 Post Club Member
NobleHouse  Online Content
3000 Post Club Member

Joined: Jan 2018
Posts: 3,148
In the Ozarks of Missouri
Prayers and comfort for you and your family.


[Linked Image]
Re: Update on (lack of) health [Re: Monica K.] #2870913
07/20/19 11:53 AM
07/20/19 11:53 AM
Joined: Dec 2010
Posts: 2,391
Midwest USA
Stubbie Offline
Gold Subscriber
Stubbie  Offline
Gold Subscriber
2000 Post Club Member

Joined: Dec 2010
Posts: 2,391
Midwest USA
Oh, Monica! My heart goes out to you. Thank you for the post letting us know these latest developments--it must have been difficult for you to compose, but as usual, it was written with your customary grace and thoughtfulness. Thoughts and prayers for you and your family.


[Linked Image]
In summer, the song sings itself. --William Carlos Williams
Re: Update on (lack of) health [Re: Monica K.] #2870914
07/20/19 11:54 AM
07/20/19 11:54 AM
Joined: Jul 2016
Posts: 540
P
Pianoperformance Online content
500 Post Club Member
Pianoperformance  Online Content
500 Post Club Member
P

Joined: Jul 2016
Posts: 540
Peace and love to you and your family. So brave and courageous is your soul. Touched by your sharing, and sadden with your news. Look forward to listening to Einaudi, as I am a huge fan as well. 🙌🏼🙌🏼🙌🏼❤️


Dream came true : playing the piano
Kawai CS11/Yamaha Arius 161
lessons: 150 hours + counting
Re: Update on (lack of) health [Re: Monica K.] #2870924
07/20/19 12:24 PM
07/20/19 12:24 PM
Joined: May 2001
Posts: 25,966
New York City
pianoloverus Online content
Yikes! 10000 Post Club Member
pianoloverus  Online Content
Yikes! 10000 Post Club Member

Joined: May 2001
Posts: 25,966
New York City
I'm so sad to hear this. I wish you happiness and peace.

Re: Update on (lack of) health [Re: Monica K.] #2870929
07/20/19 01:26 PM
07/20/19 01:26 PM
Joined: Sep 2006
Posts: 6,623
Santa Fe, NM
J
jotur Offline
Gold Level
jotur  Offline
Gold Level
6000 Post Club Member
J

Joined: Sep 2006
Posts: 6,623
Santa Fe, NM
Oh, uh. I am stunned. I have so appreciated the conversations we have had over the past many years, and the great way your kids have turned out, and, if I remember correctly, the blog about your house remodel - in hind sight that was kind of a hoot, tho I'm sure at the time it was a nuisance, and your basketball fandom, and I've been so inspired by your mindfulness, if I can use that word, in your piano playing. I suspect you will continue to live well and with wisdom - and bless us - and blessings to you and your family. Thank you for all you are.


Cathy
[Linked Image][Linked Image]
Perhaps “more music” is always the answer, no matter what the question might be! - Qwerty53
Re: Update on (lack of) health [Re: Monica K.] #2870936
07/20/19 02:02 PM
07/20/19 02:02 PM
Joined: Sep 2015
Posts: 2,520
Dublin
johnstaf Offline
2000 Post Club Member
johnstaf  Offline
2000 Post Club Member

Joined: Sep 2015
Posts: 2,520
Dublin
You courage and grace are wonderful. My wish for you is that the coming months are filled with love and happiness.

Re: Update on (lack of) health [Re: Monica K.] #2870938
07/20/19 02:07 PM
07/20/19 02:07 PM
Joined: May 2013
Posts: 3,324
Florida
cmb13 Online content

Silver Level
cmb13  Online Content

Silver Level
3000 Post Club Member

Joined: May 2013
Posts: 3,324
Florida
That is really sad news, Monica. I’ve really enjoyed watching you play, and you kindness and wisdom have been a part of this forum since I can remember. We will all be thinking of you, and I do hope you get that piece recorded.

Thoughts and prayers are with you.


Steinway A3
Boston 118 PE

YouTube

Working On
Debussy Clair De Lune
Bach Inventions
Grieg Sonata - Andante molto

"You Can Never Have Too Many Dream Pianos" -Thad Carhart
Re: Update on (lack of) health [Re: Monica K.] #2870946
07/20/19 02:24 PM
07/20/19 02:24 PM
Joined: Oct 2018
Posts: 429
India
Tech-key Offline
Full Member
Tech-key  Offline
Full Member

Joined: Oct 2018
Posts: 429
India
Very saddened to hear this. Our paths have never crossed here. I’m more of a fan; totally in awe of you. Have watched countless of your videos on YouTube. Pianomonica is my goto channel for Einaudi. One of your earliest videos- Nuvole Bianche- is my absolute favourite.

Sending loads of good wishes your way. Wish you every happiness and comfort.


Think Twice, Play Once
Re: Update on (lack of) health [Re: Monica K.] #2870975
07/20/19 03:33 PM
07/20/19 03:33 PM
Joined: May 2005
Posts: 1,042
Florida
R
Riddler Offline
1000 Post Club Member
Riddler  Offline
1000 Post Club Member
R

Joined: May 2005
Posts: 1,042
Florida
Monica, I'm terribly sorry to hear this news, but I must commend you for your courage in the way you are dealing with it. My sister went through the hospice process several years ago, and I was impressed with the many ways it helped her and the rest of the family.

I hope you can take some satisfaction in knowing that there are lots of people on this forum who are thankful to you for all that you have done to help them and encourage them in their piano efforts.

Best wishes to you.

Ed


http://edsjazzpianopage.blogspot.com/

My fingers are slow, but easily keep pace with my thoughts.

Re: Update on (lack of) health [Re: Monica K.] #2870978
07/20/19 03:42 PM
07/20/19 03:42 PM
Joined: Mar 2013
Posts: 3,540
Australia
E
earlofmar Online content
3000 Post Club Member
earlofmar  Online Content
3000 Post Club Member
E

Joined: Mar 2013
Posts: 3,540
Australia
I had been thinking of you on an off in the months since you first gave posted the bad news. Even although I don't know you, other than posts, I think of everyone here as piano family, and it is sad to hear of your decline. Your are an inspiration to many of us who have watched your videos, and you probably alone would be the reason I spent a fantastic night at the Sydney Opera House seeing Einaudi. For that I alone I say thank you.

We are all star stuff and to that we must return, wishing you many more good memories to come.


Following Trying to follow the Ling Ling 40 hour method

Kawai K8 & Kawai Novus NV10


13x[Linked Image]
[Linked Image]
Re: Update on (lack of) health [Re: Monica K.] #2870979
07/20/19 03:44 PM
07/20/19 03:44 PM
Joined: Dec 2007
Posts: 3,320
Georgia, USA
Sam S Offline

3000 Post Club Member
Sam S  Offline

3000 Post Club Member

Joined: Dec 2007
Posts: 3,320
Georgia, USA
Monica, Thanks so much for letting us all know your situation. I’m sure it was difficult, but it gives us a chance to say how much we have admired your playing over the years. And thanks for sharing your love of Einaudi’s music with us - its been wonderful. I hope you can contribute to the next recital - hopefully it will be therapeutic for you.

Wishing you all the best,
Sam

Re: Update on (lack of) health [Re: Monica K.] #2870992
07/20/19 04:37 PM
07/20/19 04:37 PM
Joined: Feb 2016
Posts: 1,983
LA County, California
bSharp(C)yclist Offline
1000 Post Club Member
bSharp(C)yclist  Offline
1000 Post Club Member

Joined: Feb 2016
Posts: 1,983
LA County, California
I'm sorry to hear the news, Monica. Your Einaudi performances in the recital have been a big inspiration to me and my piano journey. Thank you for everything you have done here at PW.

Best Wishes,
-dan


♯ ♮ ♭ ø ° Δ ♩ ♪ ♫ ♬
YouTube | SoundCloud
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Re: Update on (lack of) health [Re: Monica K.] #2870996
07/20/19 04:48 PM
07/20/19 04:48 PM
Joined: May 2015
Posts: 4,702
Florida
dogperson Offline

Silver Subscriber
dogperson  Offline

Silver Subscriber
4000 Post Club Member

Joined: May 2015
Posts: 4,702
Florida
Dear Monica
Thanks so very much for your status report; I can’t imagine how difficult this was to compose and post. I will be praying for you and your family that your days are filled with love and peace.


"Music, rich, full of feeling, not soulless, is like a crystal on which the sun falls and brings forth from it a whole rainbow" - F. Chopin
" I never dreamt with my own two hands I could touch the sky" - Sappho

It’s ok to be a Work In Progress
Re: Update on (lack of) health [Re: Monica K.] #2870997
07/20/19 04:54 PM
07/20/19 04:54 PM
Joined: Jul 2017
Posts: 339
Salish Sea
Qwerty53 Online content

Silver Supporter until Sept 10 2020
Qwerty53  Online Content

Silver Supporter until Sept 10 2020

Full Member

Joined: Jul 2017
Posts: 339
Salish Sea
Dear Monica, so many of your piano friends will be holding you in their hearts, wishing you peace and comfort, and sending beautiful music your way.


”Mister Upright,” Yamaha YUS5.
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