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Living With Incurable Cancer - Terminal Illness With an Ambiguous End Date - Dealing with Mortality
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- čas přidán 19. 08. 2024
- Incurable but treatable. How I deal with my diagnosis of metastatic uveal melanoma and thoughts about knowing your life will end too soon, but you don't know how soon. Why meditating on your death, or coming to terms with your mortality, is key to living your best life possible in the present and why having a terminal illness is not as romantic as you'd think. In fact, a terminal illness is kind of boring, time consuming, repetitive and emotionally draining.
On February 22nd 2022, I had my left eye surgically removed due to ocular melanoma, a rare eye cancer that affects about 2500 people a year in the USA. This video documents my recovery and healing after enucleation.
Because of the large size of the tumor (16mm wide by 7mm deep), the closeness to my center of vision and my retina detachment due to fluid leaking from the tumor, I was a poor candidate for brachytherapy ( radiation plaque). Radiation damage would had left me functionally blind in that eye along with probable cataracts and glaucoma.
Once I knew I was removing my eye (enucleation) I bought an eye patch to practice one-eyed living. I quickly discovered that I had full depth of perception with only one eye.
I bought a pair of swim goggles and blackened out the left frame. Then I waited for the sun to go down. I I caught my first wave easily and surfed like I had two eyes.
I knew then that everything was going to be fine. One eyed living would be grand.
But losing the eye is the easy part. The hard part is the lifelong risk of metaization in the liver and lungs. That's what makes this cancer so deadly. It likes to spread in the blood and is particularly fond of taking up residency in the liver.
There are no cures at the moment. So getting metastization is a game of whack-a mole where you keep treating the lesions while they keep trying to come back.
You can visit my Facebook page to follow my journey and see my awesome photos of sunsets, sunrises, moons and astral.
/ original.clay.butler
For more information about ocular melanoma visit:
/ acureinsight
acureinsight.org/
Prosthetic Eye by the Magic Hands of Steven Young
www.stevenryou...
My Ocular Oncologist who skilfully removed my eye
stanfordhealth...
Clay was diagnosed with Ocular Melanoma, a rare aggressive eye cancer in January 2022. It metastasized to his liver in September. Born on 1966, he died at 57 years old, on June 13th 2023 at home with the support of hospice, 17 ½ months after the original diagnosis. Thank you for all your videos, thank you for your generosity.
😢
May he rest in peace.
@@alexanderl9985 :(
He was quite articulate. He knew what his outcome was likely to be and told it quite bluntly here.
May his soul rest in peace..
🙏
Rest in Peace Clay. Thank you for being a beacon of light to others, and helping others talk about the incredibly difficult subject.
He died?
This came up as I was looking under cancer topics. My wife has stage four breast cancer that has gone to her lungs. What he said about you don’t want to die twice is one of the best pieces of advice we will probably ever get. He so articulately stated exactly what a stage four patient is going through. Bless this man.for having the courage to go through what he did, and try to help others while doing it.❤️
"Never die twice" is pure wisdom. I'm not going through any struggle (and yes, I am grateful), but I enjoy your energy and your spirit and I hope you only die once!
Thanks for watching! And yes, only dyeing once!
We are the same age and you are 5 months ahead of me in diagnosis. I’ve followed you since I was diagnosed. I appreciate your videos and you have helped me tremendously
You're welcome Kat!
This is why I go to the eye doctor yearly. I had a NDE and it was incredible leaving my body. You have everything to look forward to...the hardest part of death is realizing the precious life is. It is however NOT the end you simply leave your physical temple and have the adventure of your life!
Clay-It’s great that you put a voice to what we with OM are all going through. Thank you.💕
Thanks! I'm going to make this disease famous one way or another ;) Visibility is so important.
I also have OM, and have had Brachytherapy in 2019. I have been lucky sofar, with no spreading. Every half year liver test is like russian roulette. Stay strong, and I hope the treatment works out! 🤗
What Class was your tumor? I, unfortunately got Class 2 PRAME positive. The most aggressive type.
Rest in peace, Clay!
hi clay my fiencee was given 4 months to live with abdominal and liver cancer, treatmentswere going to give her a few months more if it worked.she declined as a brave girl does and with morphine she died after 2 months in her own flat as she wished.i am so proud of her doing it her way and RIP gail xxxxxx. god bless you too clay
Once again, Clay, you use what you are going through to help others. I had my mother watch this with me. I have not had metastasis of my uveal melanoma, but it allowed me to open up to her the fact that the thoughts are always there. I shared your videos before with family and friends to describe my diagnosis, surgery, my phantom vision, and now will have this. I’m so sorry you have this journey, but thank you for helping the rest of us with these videos! ❤
Thanks! You comment definitely puts a spring in my step! I'm at my happiest and most satisfied when I'm helping others. The only advantage to OM is that we usually have ample time to come to grips with future mets. It's important to take advantage of that time to help you prepare emotionally if it does happen.
Going through this as we speak (stage IV prostate cancer). Your words were a light in the storm. I started going down the road of dying twice and now I daily affirm, what do I have to do today. Keep busy and enjoy the journey brother. Thank you for for sharing your soul!
Thanks Mike. Good luck on your journey!
How are you doing now ? Good I hope
@desertraider8628 6 months after chemo my numbers started rising again. Meeting with the oncologist this week to discuss options.
@@Bezhig I hope you get good news ,stay strong
I really love your sight on life with terminal cancer. I living with terminal pancreas cancer
Hope you are an outlier and doctors are scratching their heads in the future wondering, how comes she's still alive? That my goal. "Gee, he should be dead by now!" ;)
Clay, I want you to know that I’m so proud of you for sharing what you have shared. I am a stage four metastatic melanoma survivor and 11 years ago I was in your shoes. So I kind of understand where you’re coming from and you have explained facing death so well. My heart hurts that you have ocular melanoma and that it’s gone to your liver. I listen to this video a couple times and I’m sad and happy that you are facing it so well and it’s a great lesson for people. Keeping a role model for people diagnosed with this horrible disease and sending you good vibes and energy from California!❤😢❤❤
Thanks Stephanie!
"Do not die twice" - that's a very inspiring advice. I will keep this in mind, while I live forword here in Amsterdam as a OM'er myself, with blurred vision and phantom-images daily. Keep strong!
Phantom eye syndrome is so annoying! Mine has been flaring up today after subsiding for several weeks. I have a layer of geometric translucent pattern of gibberish superimposed over my computer screen.
@@claybutler I've seen your video about it and it was pretty satisfying for me to find some recognition, like you I see a transparant layer of geometric, letter-like forms, upside down, cannot read it, it looks more like rhune-signs. Jelly, soapy, slowly moving. After 3 years enucleation. We go forward, Clay!
Sorry to hear you got that news. You seem like someone who should stick around longer on this planet. I hope you get five or ten good years. I had a couple of friends die young from AIDS a few decades ago. Mostly when there wasn't much of a future for them, they got joy from looking back on the good times and the fun things they had done in the past. That's my random grain of wisdom. Peace
Thanks Elaine! I'm hoping my cancer will be like the way AIDS is now. With the proper meds it's totally manageable. Incurable, but manageable.
Hello Mr. Clay. I'm from Turkey. I first saw your name about 10 years ago in the comments section of Mark's Daily Apple blogs and I've followed your work occasionally since then. When I found out you had a CZcams channel I subscribed to it, as well. I am saddened to learn about the situation with your health and I wish you the best. I sincerely wish you a full recovery, regardless of what the doctors say about your condition. Take care.
Thanks! I actually have some videos planned that have to do with health and fitness, lipids, being a Lean Mass hyperresponder.
Despite having this dreadful disease, Clay kept his great sense of humour. I am sorry to read he passed away two year ago
I'm going to miss his words of wisdom.
Rest in peace and hang 10 out there
Thanks for this. I’m struggling so much. I’m also a caregiver in addition to incurable cancer and it’s hard to tough it out.
Wow, that is a lot to handle. I've found that helping others helps take the focus off myself and provides great life satisfaction. But I'm also doing it from afar, with multiple people. Which is totally different than what you are going through where you have full responsibility for another person. I hope you have someone in your life that you can lean on as well.
Hey..I'm right there with you. I have incurable cancer too. Really sucks!!!!
Hi Clay - hoping the words of wisdom a man gave you hits home when I ask my husband to watch it with me. He’s taken the die twice route because of total denial. Hoping this dude talk will help him open up!
I hope he sees the wisdom in confronting this head on and making peace with it. It will eat you up. Suppressed emotions grow deep roots and they end up expressing themselves in very weird ways. Usually in the form of misdirected anger towards the ones you love the most.
Gruesome Death awaits us all. We just don't know how long it will wait. Audience wishes his grieving survivors all the best. Cheers!
Hi Clay I’m praying for ur recovery. I’m also diagnosed with OM this year. Take good care of urself. With God’s grace you will be fine, Amen..
Thanks for the encouragement but I really wish it worked that way. I'm not going to be fine. Treatments are going to be hard on me physically, and barring a major medical breakthrough in this disease, I'm going to die early. It's just part of the disease.
Thanks for sharing. I have OM, class 2. I am almost finished with year 4 and am blessed. I often feel like I need to think more about what is possible, but after hearing your wisdom on dying once, it makes me realize that I've actually come to grips with it. Thank you for this video.
Congrats on getting through finishing year four! I was hoping for at least two years of clean scans but only got nine months. Doh!
Hang in there Clay. I'm rooting for you!
Sending you tons of love Clay. I hope you beat it and live a healthy long life. As you said treatments are getting better and I hope you respond better to the treatment.
Thanks bro. I'm going to make an official announcement in the LMHR group, combined with a long essay about my thoughts about the health and fitness space and the over obsession with lipids and blood work.
Powerful and moving that report from the front. Meditation at gun point...
Blessings on your journey!
Meditation at gunpoint. I like that!
Aren't there clinical trials?God Bless you honey❤❤❤❤
@@claybutler It does seem to fit, eh?
@@lisawhite3648 Yes. I'm in the IDE-196 trial right now. I'll know on March 20th weather its working and I get to stay in the trial.
@@claybutler Wishing you all the best, Clay.
Hey Clay, I haven't seen any videos from you in a long time. I wish you much strength and joy and want to thank you for inspiring me in some things. It is good to hear from you.
Thanks! I only make videos when I have something important to say that I also think will be helpful to others. So the videos will come out in big bursts.
Cancer is my new jam ;) A lot of accelerated learning.
Stay strong clay. I really do wish you all the best.
Thanks Mark!
I just found Clay and not sad to see that has passed ...i too have the same ocular melanoma ...
I'm so sorry you have to go threw this but I really hope you make it passed two years. I just wanted to thank you for posting your videos and you really helped me while I was in Art School and your videos continue to make me a better artist. Thank you for everything!
You're welcome! And thanks for the kind words.
I'm sorry for what you're going through. Thanks for the great video though. This is great information and food-for-thought for all of us.
Thanks!
What a great guy !!!
Rest in Peace, Love and Aloha, Clay!
I found you on youtube because of a vector drawing Video, you were so awsome explaining and right to the point, that I instantaneosly subbed. You seem like an awsome guy, I wish you all the best, the best to you, friends and family. Continue to be strong!
Thanks Josué!
Very helpful info!! Good job Clay 🧿
Thanks Peggy!
In the same boat, not curable but treatable. I wanna break that statistical record though but let’s see
❤️ this was very insightful. Thank you
Thank you
You're welcome.
Clay, Vickie formerly from Marzi here. Watching all the flooding in Santa Cruz and randomly thought, I wonder if Clay still lives there? and if he's affected by this mess. Wonder if he has a CZcams channel? Ended here. Yikes. I know you'll face this head on with knowledge and humor. Best always.
Yeah, 2022 was a bizarre year. Just constant adjusting. Going to UCLA on the 17th for a liver biopsy, MRI, CT, pulmonary test, and advance eye examination in preparation for starting a drug study for the treatment of uveal melanoma. You should see the storm photos I took!
facebook.com/original.clay.butler/posts/pfbid0DDXZ3Lsn2CX1H7m8yTZN6ayRTRb9CSXsBgwbuFSX79TKNLDRwSzWSWEu2wJkA5JSl
@@claybutler Natural disasters make the best photos......Great stuff.
Good talk!! Thank you for sharing!! How do you decide whether to take drug treatments or research best diet for survival? Hard choices! Did any doctor tell you if Whole Food Plant based eating could help? vs. treatments that may compromise immune system?? I wish you the very very Best!!❤️
That's an easy one. Without radical medical intervention, you die within two years with my cancer. It's incurable and I'll never be cancer free. So the natural method assures dying earlier rather than later.
This really isn't about the strength of your innate immune system. Cancer proliferates precisely because it hijacks your system to achieve near unlimited growth. It grows its own blood supply, suppresses the planned death response, hides from your t-cells by suppressing it antigen expression, and over expresses its PD-L1 proteins to trick your immune system into thinking they are normal healthy cells. Your innate immune system, in this situation, needs help. Common choices are immunotherapy, checkpoint inhibitors, protein kinase inhibitors, chemoembolization, Y-90 beans, and ablation or resection. These interventions give your immune system a fighting chance.
And then there's zero evidence to support whole food plant based diet for cancer. I know we all like the idea of beating cancer with keto, vitamin C, green smoothies, mushrooms, veganism, etc, because it's very appealing that we may have control over our cancer. But there's no real evidence to support any of it. So eat what makes you feel and perform your best, whatever diet that is.
For me, that's animal based, low carb/keto. My liver blood work is outstanding, my liver fat is about 1.5%, I have a lot of lean muscle mass and strong bones. And with my cancer, that makes all the difference. My conditioning, low inflammation, great metabolic health, and high kidney and liver function allows me to try any treatment I choose because I can withstand the side effects. I recover very fast. My side effects are very low compared to the average in my current trial IDE-196, at UCLA. I travel there once per month for blood work, scans and a new supply of drugs.
I've seen what happens when people get my cancer, but they already have comorbidities. Their effective treatment timeline shrinks and they cannot take advantage of all options because they already have failing kidneys, an unhealthy fatty liver, high blood pressure,. etc.
In these trials, they kick you off if the side effects become too dangerous, even if it's working to shrink your tumors.
People sorry to say that clay has paseed away 😥
If he were still with us, my answer to his questions would be to stop treatment, max out your credit cards and take a European vacation because trying to eke out another month or two of life isn’t worth the effort.
I have a brain tumor that puts me in a similar situation
Some need to address, or check themselves, how empty or how to fulfill complete oneness
I'm betting on you!
Thanks Diana!
Döstädning , The Gentle Art of Swedish Death Cleaning: How to Free Yourself and Your Family from a Lifetime of Clutter
Book by Margareta Magnusson
Why can’t people with liver cancer get a liver transplant? Or get most of their liver cut out? Doesn’t the liver grow back?
That's a very good question. People do have tumors cut out of their liver. But this is generally only when you have a single contained tumor. But with this cancer the tumors will always come back. So if you get another single tumor you can continue to cut them out.
However most of us are not so fortunate to have a single tumor. I have six right now plus a whole bunch of tiny ones in the 1 mm range.
So my only option is either liver directed therapy,where you treat the whole liver, or systemic where you treat the whole body.
A middle option is Y-90 beads. These are microscopic radioactive beads, smaller than a red blood cell. Every tumor has its own blood supply. So they cut off the blood supply temporarily and then put these radioactive beads into the blood supply feeding the tumor. The tumor sucks up the radioactive beads and slowly kills it from the inside.
However, that can only be done on a tumor that's big enough to have its own blood supply. And the treatment will only affect that specific tumor that got the radioactive beads.
This is also why a liver transplant is not appropriate for somebody like me. If you gave me a new liver, I would reinfect it with cancer right away. Because this is a blood-borne cancer. It starts in the eye, and then the eye tumor seeds the bloodstream with cancer cells. These can float around for literally decades. So it would be a waste of a good liver that would be best use on somebody else that wouldn't immediately infected with cancer.
@@claybutler Thank you for explaining. I’m so sorry you’re going through this. I’ve read about turmeric helping to inhibit cancer; and immune therapy helps cancer patients. But I’m sure you’ve already looked into all these options.
Thank you for taking precious time to explain these things to us. If you accept prayers, I’ll be praying for you. ❤️
That's what I thought to.
@@bobs1356 I forgot to add one thing. When you get an organ transplant you have to be on immunosuppressive drugs for the rest of your life. Otherwise your body will reject the organ. One of the side effects of immunosuppressive drugs is a much greater chance of cancer among other diseases and infections. Basically, the drugs make you extremely vulnerable to disease.
So the liver would even be more likely to get cancerous tumors and have less ability to fight them.
The cancer is circulating in the blood. So however many liver transplants you may theoretically have, if you’re going to get mets in the liver, from their circulation in your blood, you will continue to get them. Hope this explains it❤️
How you feel now?
Bogus, the body is a self healing machine, must respect your life form duh! :)
😍😇❤🖐
Yep. 100% agreed and correct.