The Eyes Have It
[Note: Further updates will be in the comments of this page of my blog. Dating and attraction advice is too important to be sidetracked on my main blog.]
This is a rather personal post because this past week has been rather eventful for me. A routine eye exam last Friday led to a visit to the worst type of doctor to be referred to. I don’t mean the proctologist. I mean oncologist, the cancer specialist.
My appointment today was with my new retinal oncologist. Put simply, I have eye cancer. More specifically, I have a choroidal melanoma. It’s a rare cancer with only four in a million people affected by it. Because it’s a melanoma, the cancer is considered malignant and so my doctor(s) must act quickly lest it spread.
I received the diagnosis just three days ago when I went to the Rand Eye Institute at the absolute insistence of the first eye doctor I saw. In fact, he wanted me to go the same day I saw him. I went on Monday. The retinologist (there is such a thing) did some serious examinations – including an ultra sound. Then he sat me down to look at photos of both retinas. It was quite clear the my right retina wasn’t right. The appointment with the retinal oncologist was made. His parting words “stay off the Internet” meaning “your research will freak you out.”
Of course I did my research and yes, I did get freaked out. Enucleation – eyeball removal – is one of the common “treatments”. Another treatment is plaque radiation. I get to keep my eye but radiation retinopathy will ultimately result. No matter which one, my right eye is basically fucked. I spent a couple of days wondering what it would be like to have only one eye. That’s a mental exercise I thought I would never have in my life.
So today, after a long motorcycle ride down to South Miami (I live in the Fort Lauderdale area) and another battery of tests, the oncologist confirmed the diagnosis. I do indeed have a choroidal melanoma. It’s a small/medium-sized tumor and the treatment is plaque radiation, not eyeball removal. Of course, today was national “talk like a pirate” day so I asked about eye patch possibilities. The doctor nixed it. After treatment, I need to use my right eye so it heals up faster after all those roentgens have bombarded it.
On October 8, I check myself into a Miami hospital for a four night stay and some serious medical treatment on my hapless eyeball. With so much radiation going on, the treatment is complex and expensive. I do have health insurance but there will be costs that I must cover personally. Welcome to American health care.
Plaque radiation has some curious elements to it. For one, a physicist will be part of the surgical team. That’s the person who calculates the level of radioactivity to be delivered to my tumor. The radioactive plaque will be custom made for me and must be delivered in a way so as not to contaminate the area. After the initial surgery, visitors must stay six feet away and wear a lead shield. I won’t be allowed to leave my room. I’ll be radioactive, baby!
Hopefully, I’ll be able to blog about all this and get some cool photos.
The Private Man 
Dude. Wow. Best of luck, but at least you can change your blog to “Radioactive Man” at least for a little while.
I wish you the best of luck and will be praying for you.
I wish you all the best and a speedy recovery!
I hope for you a speedy recovery! Good luck.
Sending you positive energy….
Tough dice man. Keep your head up and stay positive.
Wow sorry to hear sounds like you really need that drink I owe you!
Dude, I’m so sorry to hear. Best of luck with the surgery/operation. I hope it all goes well — the least invasive, I mean.
Wish you all the best.
p.s. radioactive man:
One of my relatives had this about 15-20 years ago. She did the plaque radiation treatment in Philly. I think that the treatment was pretty new at the time. They opened up her eyeball, glued the plaque on the tumor, left it in a few days and then took it out. It turned out well. She has very limited eysight in the effected eye but the cancer is gone and her eye looks normal although it looked pretty hairy for a month or two. She spent a few days in the hospital and visitors could only stay a limited time due to the radiation. She has regular checkups and they have been OK. This treatment works and they’ve probably gotten better at it over the past 15 years.
Good luck.
To TPM – yes, to the above. I have had one patient, healthy, middle-aged female with exactly the same presentation eight years ago, and after 18 years of practicing (rare, indeed!). She received plaque irradiation at Hopkins, limited her vision some in the affected eye, but you’d never guess there was EVER a thing wrong and it is done, over, finito.
You’ll do fine, and it will be nothing to you on down the road.
Gutted man, just goes to show us all we should try not to take life for granted, because you never know when you’re going to get a curveball thrown your way.
Props on the positive attitude, and retaining a sense of humour about it all. Good luck, and speedy recovery.
Good luck. Stay strong.
Wishing you the very best through all this – I’ll keep you in my prayers.
Jeeeeez PM! This is certainly a bummer! I’m thinking of you and sending positive energy your way from here in NC…I know it’s a big tornado in your world-this diagnosis-but the consolation is that you’ve helped many and those will help you in any way they can…You are loved and cared for by lots of people! I wish I were there in FL I’d come visit you and try to make you laugh 🙂
You’ll get through this a stronger person and probably heal up just fine. I will spread the word here of your plight and hopefully raise some donations for your care.
Big hugs to you! Thanks for sharing this news.
XO
Kristen
Wishing you all the best through this.
My husband has very limited vision in one eye and is still able to retain his pilot’s license and fly. I think his main problem with it (except for the fact that he would prefer to have vision in both, obviously) is depth perception. I think the depth perception is mainly up close and not with distances.
Wishing you a speedy recovery!
Welcome to the very exclusive ocular melanoma club. I am so sorry that you have become a member. I am a 2 and 1/2 year survivor. I have radiation retinopathy in my left eye. You get used to it all in time and it becomes a new normal. It can be scary but there is a very active community that offers information and support on Facebook if you are interested. There are a few good places for information, Ocular Melanoma Foundation and Melanoma Research Foundation. There is reliable up to date information there. There is also A Cure In Sight that has some good information and links to good sites. A Cure In Sight also has a Cure Companion program to team newly diagnosed people with those who have been through it. Please let me know if you would like any information or to just talk about your journey.
Best of luck!
Melody Kling
51
Diagnosed 12-2010
Tumor 11x14x5
Left eye
Plaque Radiation 4-2111
Treated at University of North Carolina
Currently no meds
A Cure In Sight .net
melody@acureinsight.net
Damn, I had no idea there was a support group and all this stuff going on. I had to refer to my paperwork for my own tumor’s details:
Diagnosed 9/16/2013
Right eye
I-125 radiotherapy scheduled for 10/08/2013 at Larkin Hospital, Miami, Florida.
Tumor: 14X11x3.4 (millimeter)
Hello…. I am a choroidal melanoma survivor. Diagnosed in December 2005, plaque radiation treatment at Johns Hopkins… I will celebrate 8 years on December and I still have vision in my ‘special eye’. If you want to chat privately, I am happy to talk with you.
Good luck, and good that you caught this early.
Good luck, sounds like a rare though treatable cancer.
Have you asked about getting a telescopic lens put in? Or even a camera that takes a photo if you double blink. This is your chance to get yourself a (admittedly minor) superpower!
I shall make some inquiries. I like the camera idea. Maybe they can install a USB port in a nostril. That would be legendary.
Been there done that……6 year survivor of ocular melanoma…..best wishes!!
Hi there!
It’s a creepy diagnosis and a freaky roller coaster. My husband and I went through this 4 1/2 years ago and treatment was swift and so far effective. The plaque radiation therapy has resulted in some of the retinopathy but somehow, against all odds and medical expectations, he still has nearly all the vision in his eye. It’s no picnic and the shots every eight weeks or so to treat the swelling are no fun, but I wanted you to know that there is hope in this journey you have begun. We have a great picture of my husband with his oncologist/surgeon the day after the plaque was removed. He looks like he had been in a bar fight. We still laugh at that one we we need a pick me up.
Best wishes in your journey and I am hopeful your treatment is as successful as ours has been.
Peace and health,
Rebecca
Thank you so much for that. I will be writing about this medical adventure on a separate page on my blog:
And just how DID you find my blog?!
“Hopefully, I’ll be able to blog about all this and get some cool photos.”
no. you HAVE to write about the procedure. if anything for the simple fact of educating an unknowing public. i’ll ask one of my Rad’s about it.
My best wishes and positive thoughts coming your way.
This sucks however knowing this early sucks less than knowing too late, suggest you not predict the future and keep your thoughts only about what’s best each day or perhaps a day ahead. I’m pulling for your complete good health, long term and many more blog posts
God Bless you and keep you, Private Man, I hope it goes really well for you. All my good wishes and good luck.
Geez, that sucks. About not getting to wear the eye-patch. Talk about inscrutable.
The whole retinal cancer sucks, too. I didn’t even know it was a thing. But for a rare cancer, it sure seems like a lot of commenters have experience with it. If it’s a blog-contagious thing, I’d blame them, but at least there seem to be good outcomes.
Stay strong, man. And you could always just wear the eye-patch on the other eye on special occasions…
Sucks, but glad you’ve got the “let’s get it done” attitude. My Mom likes to say “What’s done is did and can’t be undid” – a line from some play she did years ago. In this instance, you did the smart thing, got checked, was told something you never thought you’d be told, freaked out about, then got to the other side of the freak out.
I can only hope I’m as brave.
Keep you head up – and it’s great to see so many people voicing their support and some with real knowledge about the situation.
Hang in there. I went through the plaque treatment at Baskin Palmer Eye Hospital (part of the Jackson Hospital group) in ’06. My eyesight is fine today as it has been all along. I know people have had all types of problems after treatment. A few days at home and I was back to normal. There were no symptoms at diagnosis so there was nothing to get “better”.
If it is available, it wasn’t when I was treated, have the tumor biopsied. It will give you an idea of what your odds are for metastasis. That MUST be done before the eye is treated. A lot of people don’t want to know but if you do, get it done. I really wish it was available for me.