I had my first follow-up appointment after having proton beam radiation for ocular melanoma 3 months ago. My emotions were all over the place, as it felt like this appointment would define my entire future. The doctor said everything looked just like it was supposed to!
I feel so happy, relieved, and grateful!
San Francisco was gorgeous! It was a perfect 70 degrees while the surrounding areas were in the 100s! Everything was green and flowery, while the sky constantly alternated between foggy and sunny.
My husband and I were able to plan this trip well in advance and lucked out to nab first-class tickets for a very reasonable price. Oh wow, relaxing in the spacious, comfortable seats was nice! Flying first class made this necessary trip feel like a luxury and was a wonderful treat for our anniversary!
We celebrated our anniversary with a picnic in our hotel room. We walked to Whole Foods up the hill and got salt-free turkey slices (which tasted just like leftover Thanksgiving turkey!), cheese slices, and our favorite Red Velvet cupcakes. Yummy!
This was a very quick trip. We flew to San Francisco on Monday afternoon, my appointment was on Tuesday, and we flew back to Montana on Wednesday morning. I’m so glad to be back home with that appointment behind me!
If you’re interested in the details of my appointment, please read on. And if you’re not, I completely understand and wish you wonderful, happy things!
The appointment took nearly 3 hours, and a lot of it was spent waiting between different tests.
- Numbing drops, a vision test, and checking eye pressure.
- Dilation drops and waiting for them to take effect.
- I sat in front of a visual field analyzer machine for about 10 minutes, where I’d click a controller every time I saw a squiggly light.
- I had an eye scan, more numbing drops, and an ultrasound. Having the cold ultrasound gel glopped onto my eyelid is an odd sensation!
- I had my appointment with the doctor. He looked in both eyes with a bright light and recorded his findings. He said things looked like they were supposed to at this stage. I will see my ocular oncologist in Montana in three months and return to San Francisco in six months.
And then I was done! There was nothing painful. The tests were ones I’ve had many times before, so there were no surprises. I enjoyed meeting some of the other patients in the waiting room. We were all in various stages of the same story, and it was nice to visit with them. It’s difficult to find anything from a patient’s perspective about going through treatment for ocular melanoma, and I certainly don’t know anyone in my area who’s dealt with it.
About my vision: I’d already had some vision loss from my previous laser treatment in 2021. My vision was a bit squished and distorted, and there was a blind spot—an irregular-shaped hole where the vision was just missing. I also had extreme light sensitivity that could bring me to tears. Ouch!
After Proton Beam Radiation, I’ve slowly had more vision loss, which is what I was told to expect. I can only describe it as melting. The whole center part of my vision has melted into a cloudy, milky blob. I have enough peripheral vision to see my surroundings, but I can’t read anything with that eye, near or far. My depth perception is completely gone, and my right eye gets tired easily from doing all the work. I’ve had a few very dark times when I felt quite devastated by the vision loss. It’s a traumatic thing! But mostly, I’ve accepted what’s happening and have given myself a lot of grace. I was hoping that the light sensitivity would ease up, but no, I still can’t tolerate much light at all. I’ve always got my sunglasses and floppy sun hat at the ready!
Also, after radiation, I was told to expect a burn on my lower eyelid and that my eyelashes would fall out in that spot. Those things did happen. The burn showed up about three weeks after radiation, just as expected. It was mildly uncomfortable and itchy, and I used a special ointment to treat it for about a week. My eyelashes did fall out in a small section of my lower lid. They may or may not grow back, but it doesn’t bother me too much.
So those are the nitty-gritty details! I wish you all the best!
Aw, I’m happy and sad for you at the same time. The first class trip to finding out good news hopefully brings you joy. Those squiggly light tests (field tests) can be so tiring. You’ve adjusted well to what you’re dealing with, a positive attitude is a plus. Our eyes are so precious as is our sight. I’m sending hugs and healing wishes your way. 🤗🥰
Thank you so much, Shelley! I appreciate your kind words. ❤️
Hi Michelle,
I am glad you had a good trip and celebration in San Francisco! And I can understand the angst about your vision. We are so dependent on our eyes! (Any artist’s nightmare is losing sight…) I am a bit squeamish about the details….. so I skimmed…. but I wanted to say that the human body is amazing…. and humbling at the same time. We are at our “best” when we are too young to appreciate it… and then life happens and we lose one thing after another… hoping we will still be able to enjoy things when we can finally “sit down for a rest”! (Older age has been catching up with me lately…) Years ago, my ex husband – we were together at the time- had an accident and lost all vision in one eye. Through the years I have been amazed at how he has coped with the loss…. he never let it slow him down or bother him. But we are all different, I would probably not have handled it so well, and I am not trying to trivialize your challenge…. just trying to share some hope. Hope that things will get easier in time. 🙂
Thank you for your lovely comment, Betsy! What you said about your ex does give me hope. You’re right, it’s amazing how the body can adjust. And so true, if it’s not one thing it’s another as we get older!
Michelle, thank you for the update. I am hugging you and wishing your all the best.
Thank you so much, Daria! You are so sweet!
Here’s to good news! AND to good food! I’m so glad you found some pockets of joy during your visit to San Francisco. I’m sending you so much love, Michelle. 😘❤️
Thank you so much, Kari! I appreciate your kindness so much! ❤️
Oh, wow. This is such great information for other people who might be doing a search for what’s going to happen to them. Good on you for sharing all of this.
I’m so sorry to hear about the vision loss, though. That must be frustrating and scary. Hugs to you and hopes that you will get to keep your vision.
Thank you so much, Engie! I would be happy if my post helped someone through the procedure. ❤️
I’ve been trying to leave comments all weekend but haven’t been able to!
Losing vision is a scary prospect for anyone, but for an artist like you it must be absolutely terrifying. Do the experts know if this is it now, if it’s stabilized, or is there any likelihood of it changing? The most important thing is the melanoma, of course, and it sounds like that part is taken care of?
Light sensitivity is no joke, either. Oh Michelle! What a trial for you but you are handling it with so much grace. Lots of love to you.
Oh, that cupcake! I want to hop into the screen and eat it. Flying first class is such a wonderful treat – hey, if you have to go through treatments, then you deserve some treats!
Sending love. xoxoxo
Thank you so much, Nicole! Ally let me know that my comments were off, so I checked and got them back on. Who knows how I did that?! 🤣 I appreciate you for coming back to check! ❤️ I’ve been told that the vision loss could continue over several years, and they’ll keep checking for any recurrence of the melanoma for several years as well. That weighs heavily on me, but I’ll keep hoping for good news and I’ll keep on enjoying everything I can! First class and cupcakes!!
Most of all I am happy to hear that all looks as it is supposed to look. And what a wonderful mindset that you make those necessary trips into something fun by booking first class tickets and celebrating your anniversary. I loved the idea of having a picnic in your hotel room. And then you were treated with such gorgeous SF views.
I am hoping the melting visual loss will come to a halt. I bet there are hard days but I am hoping and wishing the good ones are much more numerous.
Thank you so much, Tobia! Your kind comment means a lot to me. ❤️
Oh friend, what an intense roller coaster of emotions and experiences. I’m so sorry you’re walking this path, but am absolutely certain you will be an encouragement to others in a similar situation.
Love the cupcake and hooray for first class; what a nice little boost in the midst of a less-than-fun reason to be travelling.
Thank you so much for your kind words, Elisabeth! I sure do appreciate you! ❤️