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Update on (lack of) health
#2870893 07/20/19 11:58 AM
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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
Monica K. #2870894 07/20/19 12:09 PM
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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.

Re: Update on (lack of) health
Monica K. #2870895 07/20/19 12:11 PM
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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
Monica K. #2870898 07/20/19 12:16 PM
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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
Monica K. #2870899 07/20/19 12:16 PM
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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
Monica K. #2870904 07/20/19 12:34 PM
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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.


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"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
Monica K. #2870911 07/20/19 12:49 PM
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Prayers and comfort for you and your family.



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Re: Update on (lack of) health
Monica K. #2870913 07/20/19 12:53 PM
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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.


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In summer, the song sings itself. --William Carlos Williams

Re: Update on (lack of) health
Monica K. #2870914 07/20/19 12:54 PM
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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. 🙌🏼🙌🏼🙌🏼❤️


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Re: Update on (lack of) health
Monica K. #2870924 07/20/19 01:24 PM
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I'm so sad to hear this. I wish you happiness and peace.

Re: Update on (lack of) health
Monica K. #2870929 07/20/19 02:26 PM
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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
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Perhaps "more music" is always the answer, no matter what the question might be! - Qwerty53
Re: Update on (lack of) health
Monica K. #2870936 07/20/19 03:02 PM
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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
Monica K. #2870938 07/20/19 03:07 PM
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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.


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"You Can Never Have Too Many Dream Pianos" -Thad Carhart
Re: Update on (lack of) health
Monica K. #2870946 07/20/19 03:24 PM
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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
Monica K. #2870975 07/20/19 04:33 PM
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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
Monica K. #2870978 07/20/19 04:42 PM
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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

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Re: Update on (lack of) health
Monica K. #2870979 07/20/19 04:44 PM
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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
Monica K. #2870992 07/20/19 05:37 PM
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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


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Re: Update on (lack of) health
Monica K. #2870996 07/20/19 05:48 PM
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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
Monica K. #2870997 07/20/19 05:54 PM
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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.


Currently at home with Mister Upright.
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