Updated: Apr 20, 2019
My eye cancer journey started at the end of January and was a whirlwind leading up to treatment February 28-March 7. Now that I am 5 weeks out from my last surgery, I feel like life is slowly starting to feel more normal again- my new normal!
The first week after surgery my vision was terrible. I would bump into walls and I struggled to open a kitchen cabinet. Hannah helped me light a candle one day because I couldn’t line up the lighter with the wick. My kids also held my arm walking through stores so I wouldn’t bump into people or displays! I had sharp shooting pains in my eye and my eyebrow, temple and cheek bone were sore. My Lid was quite swollen and droopy and my eye was visibly red. I did two sets of eye drops 4 times per day. 10 days into recovery I practiced driving with a patched eye. I was super nervous so we went to the church parking lot. When I felt confident with my skills I drove through the Kohl’s and Winco parking lots. Good news- I didn’t kill anyone! The hardest part was getting in the garage without taking out my mirror or hitting Rick’s car.
2 weeks post surgery I had my follow up eye appointment with Dr. Kurli. She numbed my eye and did a little procedure to fix a couple stitches that were sticking out and really causing me pain. It was a bit surreal sitting there with her prying open my eye and seeing scissors and tweezers coming straight at my eyeball. It felt like someone pulling a piece of yarn through a hole in a Sweater. I couldn’t believe how much better I felt after she took those stitches out!
We also discussed the results from my tumor Biopsy. During my first surgery, Dr. Kurli did a fine needle aspiration biopsy and sent it off to Castle Bioscience to be tested. We went over my results at the appointment which were unfortunately, none. They came back inconclusive.
The biggest challenge with Ocular melanoma is the potential risk of metastatic spread. There is no cure for choroidal melanoma metastasis, which may affect 50% of those diagnosed with this cancer. Biopsies of tumors collected during treatment are classified as class 1a, 1b, or class 2 which determines your potential risk for metastasis. 1a is considered low risk, 1b is intermediate risk, class 2 is high risk. The class can help doctors determine the best treatment plan moving forward.
In my case, since I have no results, Dr. Kurli chose a middle of the road treatment plan. My tumor is considered small which is a huge benefit and lowers my risk for Mets! Not knowing my biopsy results could be a blessing in the long run but it opens the door to a whole bunch of unknowns. I am not giving the unknown power and letting it consume my thoughts.
1. I will have eye appointments every 3 months for quite a while. Dr. Kurli is hopeful the tumor will show positive change from the radiation but said that this may not be likely until 6 months. She cannot say for sure how long it will be before they consider the tumor “dead”.
2. I will get CT scans of my abdomen and chest every 6 months for 5 years. This cancer typically metastasizes to the liver first because it travels though the blood stream. Scans will likely move to once per year moving forward if no METS is found by 5 years.
Three & Four Weeks
3-4 weeks post surgery I found myself extra emotional and weepy. I went back to work and focused on managing my double vision issues. I made some adaptations at work with my computer and patched my eye if needed. As the weeks went by I was able to reduce the size of the patch covering my eye glasses lens. The hardest part for me at work early on was socializing and talking to groups of people because my eyes were constantly moving. Everything looked like a fun house full of mirrors. It still does sometimes!
Cancer Support Group
Rick and I went to our first Cancer support group through church. It was inspiring and heart wrenching at the same time. We will go the last Wednesday of each month moving forward.
I think I need the group because at this point I am starting to feel the emotional part of post treatment recovery and thinking about taking care of my body moving forward. Especially starting to get back into “the real world” where people can’t see my current visual disability. I love that my eye doctor feels confident about my radiation treatment and her optimism of healing, however, I kind of feel left to the wolves in regards to the more integrative part of healing (mind, body, soul, diet, etc). I don’t have a medical oncologist so it is up to me to figure out how to get other survivorship help moving forward. This whole journey has been a whirlwind from diagnosis to treatment and now I am just “hanging out” until my next eye appointment in 3 months.
I am 5 weeks out and currently I feel like I have hit a vision plateau. Vision is still poor in my OM eye. I did an eye test at school and I am seeing 20/50 in my OM eye. I am pushing past the vision stuff and life is pretty much getting back to normal now. The hardest part of life for me right now is driving. It is uncomfortable and scary. I feel like everything is extra narrow and my depth perception is off. I pray every time I am behind the wheel. It can be very draining and I am often crabby after driving. The good news is that I think the double vision seems to be slowly getting better and my brain might be working things out.
At this point I am still caught up in the drama of my new normal. However, this will not be the case forever.