In my last eye update in March, I just went back to work, my vision was pretty poor, I was seeing 20/50, driving was horrible and my double vision was still a major issue. I was patching my eye to drive and by the end of six weeks post-treatment, I was a bit disappointed and felt like I hit a healing plateau. It has now been 5 months since diagnosis, and 15 weeks since the end of my treatment. There have been some challenges but I am happy to say I have also had some definite wins! I had my first post-treatment medical follow up that brought encouraging news- my tumor has already shrunk! I feel like life is slowly returning to normal, but this is definitely a new normal for me.
The secret of change is to focus all of your energy, not on fighting the old, but on building the new. -Socrates
I made a video to record some of the important moments during my journey the past five months. My journey with Ocular Melanoma is one of many defining moments in my life so I feel like it deserves a special video. The song I chose is one of my favorites from church. It is called Raise a Hallelujah by Bethel Music (Purchase here). The song lyrics were inspired by a very personal story of Bethel Music CEO Joel Taylor and his wife Janie. Their 2 year old son was very sick because his kidneys were shutting down due to an E-coli virus attacking his organs. He had blood transfusions, went on dialysis, and had seizures and respiratory issues. Soon after, their four-year-old daughter was diagnosed with the same infection. I can't even imagine the fear and pain this family was experiencing. They leaned into God and relied on their faith and support from the community to get them through the storm.
This song has become my anthem as I struggle through some challenges and some emotional ups and downs. I have listened to it many times since I first heard it in church. I believe that we need struggles in our life because they are opportunities for us to sit down and surrender. Our struggles can be an opportunity to connect with God.
God’s timing often doesn’t make sense until you look back to see that mountains were climbed and canyons were crossed on no strength of your own. Joel Taylor
For those interested in a more detailed story of the last 5 months... below is my diary of sorts. I list out my struggles, side effects, emotions, some exciting moments, and some defining moments in my recovery. I also talk about what is next.
Challenges and Side Effects:
Eyelashes: 7 weeks after treatment I woke up with a bunch of eyelashes on my cheek. I had been losing them on my OM eye slowly until 2 months after treatment. Those who know me, know I love mascara and I love long lashes so much I am willing to pay for Latisse to help them grow longer. It may sound vain, but I was self-conscious that my eyelashes didn’t match and I couldn’t wear mascara the same way. It was just another reminder of what I had been through surgically and an emotional reminder of my cancer. Interesting tidbit... I used Latisse since 2015 and my tumor never changed size. I stopped using it 9 months before my diagnosis and bam... my tumor got a lot bigger and thicker. Since Latisse was designed for glaucoma I wonder if it could have been acting as an inhibitor for my tumor? My ocular oncologist does not think so and thinks it is a weird coincidence. I am happy to report that my lashes on my OM are finally starting to grow out now!
Double Vision: While I wish I could say this symptom has resolved, unfortunately, I think it is here to stay for a while. The good news is that it has definitely improved. If I lock my eyes forward and just turn my head with my eyes in a forward position, I can see fine and do not have double vision. I no longer use a patch on my eyeglasses to cut the double vision. However, if my eyeball moves or tracks right even a little bit I experience the double vision. This can be particularly challenging when I am watching tv, moving fast, walking through a store and looking up and down at the shelves, and looking over my right shoulder while driving. The best way to describe how it looks when I track right is “wonky”. I am noticing that I just shut my OM whenever I am turning my head and looking to the right.
Dental: I went to the dentist for my cleaning and we talked about Ocular Melanoma. She said that the radiation can cause dry mouth which will affect the gums and cause plaque to get thicker and stickier. She said my gums on that side were already dry and showing some signs of increased plaque. The dry gums on my OM side made them more sensitive and bleed and I was still sore 6 hours later. As a result of the radiation side effect, they want to move me from 6-month cleanings to every 4 months to keep an eye on things. About 3 months post plaque I also started getting some sores in my mouth. I have always battled canker sores, but these were different. The sores lasted about a week and seem to have resolved.
Thick Sclera: 9 Weeks post treatment I noticed a physical change in my eye that prompted a call to my Ocular Oncologist. The white of my eye was extra red in the inside corner and had a layer of the sclera that was thicker than the rest of my eye. When I checked it out in the mirror I touched it and it literally folded/moved. The doctor said it is part of the healing process. It kind of feels like I have some “gunk” in the corner of my eye and I wonder how long can I expect the “peeling” to continue? The doctor told me this could resolve itself or it may just be part of my eye forever.
Dry Eye: The lid on my OM eye seems to be a little puffier, almost as if my eye is bulging out a bit. My eye doctor said that this is likely from dry eye. I live for my little vials of preservative-free Refresh Optive lubricating eye drops. There are vials in my purse, in my back pocket, in every crevice of my car, on my desk at work, and just about every counter in the house. I use these drops every single day. I think I have bought every box of eye drops on the market to test which ones feel the best. As crazy as it sounds, I love using the vials from my back pocket the most. I sit on them all day long at work so the drops feel warm when I first put them in my eye. It sounds silly, but it is super soothing.
Random Symptoms: The most interesting thing about my recovery is that each week brings a new side effect. I am not sure if some of these side effects are radiation related or if they are due to stress. 3 months post treatment I have experienced extra fatigue, nausea intermittently, and an annoying twitch in my nose/eye muscle for a couple of weeks. My eye bone under my eye gets sore and my eyebrow gets sore when I am fatigued. I also noticed my dark under eye circles seem extra bad right now. Another interesting side effect is bruising. I don’t typically bruise easily but for some reason, I am getting bruises all over my legs and even my rear end! They last for a long time and they get super dark. I have an appointment scheduled with my family doctor later this month and will discuss if I need to have some bloodwork to check vitamin levels. Lastly, my acne on my face is downright terrible. I scheduled an appointment with my dermatologist to start addressing this issue.
Emotions: Around 9 weeks post treatment I had an emotional surge. I must have had some bottled emotions to release. We went to church and during the music, I cried. Not just subtle weeping, I downright ugly cried. It started with prayer when so much flowed out of my heart. I think in my efforts to remain “strong” I hadn’t let myself feel some things I needed to feel. I don’t usually focus on the negative and held so much in so I didn’t come across as having a pity party. Staying positive is so important to me because that is what the mind-body connection feeds off of. But something must have been buried there and I am guessing it is fear. Will my cancer spread? Will I be one of the 50%? Why do I have to struggle with driving? Why do I have to medicate and lubricate my eyes 100 times per day? Did I cause this by using tanning beds in my past? Maybe my sour puss day was releasing emotions about my dad’s passing. I cried when he passed, but I am not sure I have really grieved.
Medical Bills: So the bills have started to roll in. Thankfully, my school district has decent insurance and I met my deductible in January. Thankfully, none of my scans or procedures have been denied at this point and insurance paid a good portion of each bill. Since diagnosis, this disease has cost well over $100,000 and the bills keep rolling in. It sucks to have to tap into our savings and pay my portion out of pocket because I would much rather save that money for my girls to go to college. I am sure this is only the beginning.
Small Wins & Milestones:
A moment of clarity: After treatment, my recovery seemed to move slowly and improvements were so subtle it was hard to recognize them. However, about 7 weeks post treatment I experienced my first genuine feeling of joy and excitement regarding my recovery. The moment happened in the evening when I was driving through my mom’s neighborhood. I noticed that I could drive without patching my eyeglasses provided I was going under 25 miles per hour. The vision was pretty clear and it felt so good to not patch my eye. I have never enjoyed driving so slowly in my entire life, so I took my time getting out of her neighborhood. Shortly after, I pulled into my garage and for some reason, I felt more comfortable parking. I couldn’t really explain the difference other than noticing the hibiscus plants looked clearer. When I walked into the house everything looked noticeably clearer as well. It took me by surprise, so I just stood in the kitchen and looked around with tears streaming down my face. My family came up to me and hugged me and we celebrated the small win. I couldn’t even get through dinner without weeping with excitement. I knew I would never forget that moment and it would be a defining moment in my journey.
No patching: One week later (3 months since diagnosis and 2 months since surgery) I drove to work without patching my eye! I practiced driving shorter distances during the weekend to build confidence and decided I could try driving unpatched all the way to work. My vision was still distorted but I felt safer driving with the distortion impairment than I did with patching. While it seems like such a small accomplishment, most days I felt like I would never see normally again. It was a long 2 months coping with my “disability” of sorts so something like driving 20 miles to work unpatched seemed like a huge milestone. I felt like it was a sign that my eyeball was on the way to a full recovery! I am now 4 months post treatment and I no longer patch my eye at all. I have learned to cope with the minor vision issues I have and make subtle adaptations.
National Eye Patch Day: Another victory and special moment from the last 4 months was celebrating National Eye Patch Days May 17-19. I decided to use the event as a way to bring awareness to Ocular Melanoma, to celebrate the completion of my treatment, and spend time with people who have supported me these past 3 months. Wearing my eye patches around town during the weekend sparked a few conversations and I have learned that many people have never heard of OM and many people do not get routine eye exams. My only hope is that maybe my story of my “freckle” changing to melanoma will encourage a few more people to choose to get a dilated eye exam this year. Thank you to those of you that tried wearing an eye patch in my honor. Thank you to those of you that have donated to one of the organizations helping to fund research and find a cure. That means more to my heart than you know! Thank you to those of you that gave me hugs and kind words of support during eye patch days, and to those of you that messaged me or called me if I couldn’t see you in person.
3-month appointment with Ocular Oncologist: I met with Dr. Kurli to do all of my routine eye exams. My vision has improved from 20/50 to 20/30 and my pressure was good at 13. The diameter of my tumor hasn’t changed, and it never will. As the cells die they turn into scar tissue, so I will always have a spot in my retina. The good news is that the thickness has decreased from 2.2 mm to 1.4 mm. Dr. Kurli said this is great and that I can consider the treatment effective. She considers the tumor “dead” since it did not show any signs of growth. My eye does not show any signs of fluid build up, radiation retinopathy (which is basically various forms of damage from radiation), or any signs of a cataract forming. It is too soon to know if I will have any visual side effects from the radiation because they don’t typically show up for a couple of years. For now, I will enjoy the quality of vision I have! We revisited the conversation regarding my tumor biopsy and that the results came back inconclusive. I have been struggling with this off and on for the last 3 months and waver between really wanting to know the class of my tumor and have some genetic information about my melanoma. Dr. Kurli helped me relax about this and reminded me that while the scientific information is helpful for research, it won’t necessarily change the outcome or risk factor for this cancer turning metastatic. There are low-risk survivors that have the cancer spread and there are high-risk survivors whose cancer never spreads. As a result, Dr. Kurli will take a fairly aggressive approach to monitor for metastasis.
What is next?
The good news is that the tumor is “dead” and treatment was effective. I knew this would be the case all along. I had no doubt that the treatment Dr. Kurli recommended would blast the heck out of my little tumor. Going to see Dr. Kurli for the rest of my life is the easy part of this disease and I look forward to seeing her again for my routine eye exams again in October.
When I was first diagnosed, my natural reaction was “kill that tumor”. I just wanted to get through treatment and “cure the cancer”. Curing the cancer would mean that I would get rid of the tumor and that the cancer would never come back. However, the more I learned about the disease, the more I realized that treatment doesn’t “cure” this disease.
The hardest part for me right now is the uncertainty of my future. Next month, July, I will go in for my first round of routine abdomen and chest CT scans. I will do these scans every 6 months for five years to check that the cancer has not spread to my liver or lungs. Ocular Melanoma metastasizes in 50% of patients and it doesn’t always happen right away. It can be years before you find out that you have liver, lung or bone cancer. It spreads through the bloodstream and once it spreads there treatments but no cure. You can still live a long and fulfilling life, but the new normal would include constant treatment such as surgeries, immunotherapy, and drugs.
Once people are cancer-free, that anxiety doesn’t just stop. Sometimes it shifts from anxiety over making it through the next day and getting to a cancer-free state to worrying over how to return to life and STAYING cancer free. -Michael Ryan, Psy.D, a psychologist at Henry Ford Health Systems
I feel like I should be excited that my eye doctor appointment went so well. I feel like I should feel relief that treatment is over. I feel like I should have gratitude for medical treatments, the skill, and expertise of my doctor, and the fact that I still have my eyeball and vision. However, I do have some fear regarding metastasis. I know better. I know should NOT live my life in fear because I have God’s hand on my shoulder and he is guiding me through this every step of the way. But the reality for me right now is that I am now learning to live as a cancer survivor. I am learning how to process the unknowns, get over the anger and the “why me”, and the financial burdens as the bills have started to roll in.
Having an invisible rare disease was not in my life plans, but it is. I am not afraid of it because I trust God is walking through it with me, but it does kind of suck! I know I am in full control of my happiness and I need to tap into my faith now more than ever as I now move into the hardest part of living with Ocular Melanoma… the waiting.
The only way to beat cancer is to accept the reality, embrace the pain and find the courage to move forward one day at a time.