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How I Lost My Eye - My Ocular Melanoma Story - Enucleation to Prosthetic Eye Time-lapse Healing
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- čas přidán 18. 08. 2024
- 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.
As of this date, June 2nd, 2022 I am cancer free.
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...
What struck me Clay, is how much you smile. Whatever gets thrown at you - you continue to smile! You are such a shining example to many. I see such kindness in your face. Your journey to date is truly heartwarming. I look forward to following you on your many adventures you have yet to live! 🙌♥️🙏
Thanks Lisa. I'm either smiling and laughing or I have my resting bitch face on, which gets mistaken for a frown. It's the curse of thin lips and an underbite. ;)
If you are over 40, and have never had a real eye examination that includes dilation - make an appointment now!
Having your pupils dilated by an ophthalmologist is a general health checkup. Beside catching possible eye cancer early, it can also identify macular degeneration, diabetic retinopathy (very common and can result in permanent eye damage and blindness) , retinal detachment (very serious as you can go blind), posterior vitreous detachment, glaucoma, and cataracs.
So don't be a big dummy like me and never get your eyes checked because "I have perfect vision so I don't need an examination!" There's no guarantee that my outcome would had been any different, but there is no way a yearly eye examination could make my situation worse. ;)
NOTE: The video description has important information and links to resources about ocular melanoma. Thanks!
Thank you for sharing this. I’m in the middle of the journey of having my eye removed and receiving a prosthetic. Your attitude is comforting and your information is helpful!
You're welcome Joanne. Good luck with the procedure!
This video is fine work sir. This is a cancer that has also touched my family. Thank you for sharing your journey thus far. Kia Kaha - go strong!
You're welcome! It is an insidious cancer. The eye part is the easy part.
Love the pairing of the inspirational music and life-affirming smile on your face every day. BTW, the prosthetic came out a perfect match.
I was really pleased. It was very shocking when I saw it for the first time. But honestly, while he was painting it it did not look impressive. I knew he was a master and has been doing this since the mid 70s, but while he's painting it it doesn't look that convincing. But once the cornea cap goes on and the and the clear layer, and all that gets baked in, it really changes. But where it really changes the most is when it's in your head. It's really amazing the difference between a prosthetic and your hand and in your socket. Your hand it looks obviously like a doll's eye. But as soon as it goes in your head it turns into a "real" eye
I’m glad you’re a warrior for us all! 👁 💪🏻 👁
Clay your positive attitude is amazing. See you in the lineup soon.
Thanks buddy! Hope you scored the last two days and today. It was firing!
Thanks for sharing this information to help make more people aware of this rare condition that we share
That's the plan!
Sharing is caring! Stay strong, Clay!
I agree!
You are such an inspiration! Thanks so much for sharing!
Thanks Stephanie!
Thank you. My husband was diagnosed with the same six days ago. Enucleation will take place in the next couple of weeks. I'm devastated for him, and everything is just so sad, and scary at the moment. I was diagnosed with breast cancer two years ago, so cancer isn't a stranger to us. Your video has given me hope that he can adjust, and come to terms with his eye-loss [which is a big deal], and that he can still live a fulfilling life. You're an inspiration, and I hope everything is still going well for you.
Great presentation of a great journey of courage, strength and success. Keep soaring Clay
Will do Glenn!
Your journey & positive outlook are such an inspiration.
Thanks Fran!
You are an inspiration, seriously!!
Thanks Eileen!
So positive and inspiring.
Well I just ran across your page I had the same melanoma cancer found out in October had my eye removed October 17. I just think God that I’m still alive but I’m heading to learn all over again. Glad I found you and I’m glad you’re doing well.
Thanks and welcome the the club that no one wants to be in ;) Do you know the class of your eye tumor? Do you have a MRI liver and CT chest scanning schedule in place?
Great presentation 👏 👌 you are good sir. Stay strong and keep healing ✨️ 💪
Thanks Sanjar!
Thanks for sharing your journey and for continuing to help people learn about this as well as help people on their low carb journey. Cheers!
Great film Clay, educational and will be a source for comfort for others who face the same diagnosis. You’re an inspiration and a real ray of positivity.
Thanks Wendy! I'm doing a whole series on this. Up next is explaining how a prosthetic moves and what phantom eye syndrome is.
Thank you, Clay, for educating us on such a rare and little understood cancer. For sure we all should be aware of the signs and symptoms so as not to put off a visit to an Ophthalmologist. So happy you are doing so well. May you continue to do so and if positivity has anything to do with it...you will excel. 😍
Thanks Celeste!
Well done, my friend!
Dear Clay, your attitude is incredible. I am inspired by how you have continued to be your awesome, honest enthusiastic self through this whole thing. You have great aloha. /// I watched the movie with Mai and Thao. Mai got a little choked up! Thao liked it, but thinks that the background song should have been "We Don't Talk About Bruno." I can't believe you were out of the water for forty days. We are so glad to have you back out there! /// Peace, s
Thanks for the kind words, and yes as crazy as it sounds, not being able to surf for that long was actually the hardest part. Surfing provides so much in my life that when it's not there it's very noticeable.
Your positivity is inspiring
Beats feeling sorry for myself for sure!
Thanks for sharing your story
Thank you for sharing your journey in such a positive light!
You’re going to be such a blessing and inspiration to others. Thank you for sharing your journey!
You're welcome!
You are an inspiration Clay.
Thanks Doreen! I'd prefer to be uninspiring and cancer free, but when life give you cancer, make cancer-ade!
Thank you again for educating us on not only a rare cancer we need to know about, but on how to mentally deal with a very difficult decision. You've been incredibly inspiring! 🙏 All my best!
Thanks Sarah!
Really uplifting Clay! Thank you very much indeed for you video
Thanks Maria. Doing my best to put a positive spin on something that is inherently not a good thing. When life gives you cancer, make cancer-ade!
Thank you Clay for sharing your journey. Hopefully this can help someone! We are all proud of you! ❤️
Thanks!
Amazing strength and positivity. Absolutely inspirational. Thank you.
Thanks!
Keep the good work- Am sure will help many that need help and not as brave as you. God Bless you and Best Wishes.
That's my main goal. I want to remove the shame and the secrecy from ocular melanoma. To many suffer in silence.
Great journey. Praying for full health for you!
Thans! Unfortunately it looks like it's already metastasizing in my liver. Doh!
Thanks for sharing your journey! Wishing you the best.
You positivity is so inspiring. This video made my day!
Thanks Jonathan! And you just made my day!
Thank you for sharing your story
Wow! So informative. You are an inspiration!
Thanks Diana
you da man. incredible to see what we're capable of. keep on healing.
Very interesting journey, Clay. Well done to come through it with such positivity.
If you don't stay positive you get punished twice. Once by the cancer and a second time by your own thoughts.
Thanks for sharing!
You're welcome!
Amazing
Inspiring. Thank you for sharing your story. Wishing you all the best
Thanks Susan!
Terrific record of an incredible journey - so illuminating ( pun intentional ) to all of us to get our eyes checked regularly
We only have two of them !
It's a good thing humans aren't cyclopsis because this disease would even be worse! At least I have one good eye and can get around just fine.
So impressed with your positive outlook through this entire life altering event!
Thanks buddy. And everyone has been very understanding with me occasionally burning someone. When I'm about to drop in, because my right eye is looking right, I can see anything to left of my nose.
Thank you for sharing your journey (one I have been following all along). Your positivity throughout all of this is admirable.
Thanks Rachel!
Great video, thank you
You're welcome!
Well done, Clay! Your amazing testimony will touch many-thanks for being so open with your journey-God bless you! 🫶🏻
Thanks!
Wow! thanks for sharing, you're such an amazing human being, it's inspiring the way you deal with something like this,i can see all of your strenght in that smile, i really love your energy, i follow you since you did illustrator tutorials, it's good to see you again, saludos from mexico, blessings!!
Thanks Deryan! I'm glad you enjoyed the video especially since you initially signed up for illustrator tutorials! Hah! Maybe my next video I should combine my two interests - "How to Draw a Prosthetic Eye"
Excited to see my 6-year old wear her prosthetic eye. 😭❤️
A good prosthetic is pretty amazing. No one can tell.
Beautiful work. Blessings
Thanks for that , our son has the same -gets his out next week .
How long did u have to take off work? Thank u so much for sharing, many blessings to you!
I have the same thing but it's still sucks I have trouble seeing
Hey Clay,, how are you doing
I have been diagnosed of anterior staphyloma and an eviceration with a possible enucleation
Feel like crying already,, thanks for this
does the Prothesis hurt at all to wear? I had enucleation surgery 2 weeks ago. . Did you have trouble with the conformer falling out?
Hi Clay! Up until what day were you in pain? Were there days that it didn’t hurt at all but next day it did? My son just had his left eye removed 4 days ago. He hasn’t been crying much up until today.. he’s non verbal though so very hard to tell.
About 5-6 days of poor sleep due to pain and discomfort. Then is started to back off really quickly. By end of week two you feel so much better. Looking down will make you feel like your eyeball is going to explode ( it won't but it feels that way). The conformer can feel weird at times, especially if it is too big. And for the first two weeks you will alternate between feeling no pain and then some pain. Usually from trying to do too much too quickly.
It's ok to put some ice wrapped in a cloth on the socket. That felt good. Showers felt good. And sometimes you just need to take a nap. Naps are great!
@@claybutler I truly appreciate the tips! I have been watching your videos days before his surgery and I’m so grateful for all the info you’ve shared! For now, he seems to be in pain by the end of the day from tiredness and maybe possibly itching..? He also hates the feeling when I have to put the medicine on his socket. I’ll try putting an ice pack next time.
@@anneminette By the end of the day it's normal to feel tired. Just getting used to using only one eye is tiring. It took several months to build up my one eye endurance on the computer. I got tired easily at first. Does he lay down on the bed when you put the drops in?
@@claybutler Yup but his is an ointment.. I’m not sure if the ointment gives a burning sensation or maybe it’s me touching his socket but he hates it. Hopefully he gets used to it cause he needs it for a few more weeks morning and night 🤞
@@anneminette The drops feel better than the ointment. It doesn't quite sting, but it's not pleasant either. Does his conformer have any holes in it? The holes are there for the medicine to get to the tissue. Can you try squeezing it into the hole? it will feel less goopy on the eyelids.
What is the conformer for? Is it possible to have the eye out and never put anything in it again?
I mean, no drops besides lubricants, no shots and no conformer or prothetic. Just let it be totally natural?