This week I had a moment I will never forget. I was diagnosed as having Ocular Melanoma.
For the last 10 years, I knew this was always a possibility.
In 2007 I was told that I had a nevus (AKA-freckle) in my eye. At the time it was small and my optometrist said that nevi are common, they generally do not require treatment and they are just monitored over time. I didn't see an optometrist for another five years. In 2012, I went to a new optometrist who also mentioned my nevus and suggested that I see a retinal specialist. I had one visit with the retinal specialist and was referred on to another doctor in Tucson. This time it was a retinal oncologist. The title scared me. I kept thinking, “oncology… that means cancer right?!”
I started routine appointments with Dr. Javid in Tucson to monitor my Nevus. I remember googling a few things about Nevi after being referred and I used the data I had from my former optometrist to see what I could learn about my particular pesky "freckle". My first appointment was 2.5 hours long. I did a couple of standard eye exams, then they did some laser scans, and then they did an ultrasound on my eyeball. So strange! The doctor came into the room, introduced himself and took a look at my pictures and data. He was very kind while also being very direct. He told me that he would like to just keep on eye on the nevus, but that a small percentage of Nevi end up turning into cancer. He described the appointment like going to get a skin check at the dermatologist. Sometimes, a dermatologist will look at a mole and decide to keep on eye on it for changes and more often than not a mole is just a mole. I also considered my appointments with Dr. Javid like going for my yearly Pap Smear- just something I have to do to stay diligent and aware of my health.
Dr. Javid said that Nevi are common- 1 in 10 people (typically Caucasian with light eyes). He told me that nevi generally do not require treatment and that they are monitored over time for changes. If changes start happening they may change the diagnosis to Ocular Melanoma and begin treating the tumor. He explained that for eye doctors to diagnose a nevus as melanoma, there are certain criteria that have to be present. Features that make nevi more high-risk include, size, a thickness greater than 2mm, visual symptoms, orange pigment, fluid, and location next to the optic nerve. Thankfully, I did not have enough characteristics to consider my nevus high risk.
Things can change in the blink of an "eye"
However, over three years of visits with Dr. Javid, my pesky little "freckle" started to show some changes. At first, it was just some fluid and he didn't love that it was close to my center of vision and optic nerve. At that point, I was a 1 out of 3 in risk factors. Then in 2015, two days before Christmas, he did not like how my nevus looked. He noted that my nevus was active and showing some growth both downwards and laterally toward my center of vision and optic nerve. The nevus thickness hadn’t changed much but some of the color had changed. I could visually see the difference in my photos and saw all the new white spots (this is called Drusen). Dr. Javid moved me out of the “benign” category but said that I was not in the “melanoma” category yet. He said that I was in a grey area. I had bumped up to 2 out of 3 risk factors now.
I was very quiet at this point. I didn’t really know what questions to ask. I wasn’t sure if I was “hearing” what I thought I was “hearing”. So I finally asked, “what happens if you see more growth or changes at the next appointment?” He said at that point he might recommend treatment. I asked what the treatment was. He said that I would probably not be a candidate for ennaculation (eyeball removal), so I would either do radiation plaque therapy or laser radiation in California. He explained that the risks associated with the radiation are a loss of eyesight and other visual problems. He said 50% of patients lose their central vision within 6 months to 5 years. He said that because of the proximity of my nevus to my optic nerve, I would be at a higher risk of losing my eyesight. Holy SHIT, time for a deep breath! I remained very calm and tried to breathe. I felt like one of the nurses was looking at me like, “oh poor girl, getting this news 2 days before Christmas”.
I stopped. I breathed. But I cried A LOT!
I left the appointment with no official diagnosis, but I was told I might be on the path to it. I absolutely felt anxious. I decided that after the holidays I needed to get a second opinion. I knew Dr. Javid was highly regarded in the Ocular Melanoma community but I had also heard good things about Dr. Mandhavi Kurli in Scottsdale, AZ. This was a win-win because she is much closer to my house than making the drive to Tucson for my appointments. I scheduled an appointment and they were able to fit me in quickly.
When I met Dr. Kurli, I felt so relaxed. Her office is small and quaint and I felt comfortable. Dr. Javid's practice in Tucson felt like a hospital and was always crazy busy. I felt like a number rather than a person. When I talked to Dr. Kurli about my experience in December I probably came across as panicked. She reassured me by telling me to not worry one bit about my eye moving forward. She told me to let her do the worrying for me. This immediately put me at ease and I loved her bedside manner. She took all my baseline measurements which differed from Dr. Javid’s some but she explained that is because they have different equipment. She told me that she would like to monitor me frequently to gather her own baseline data and she would only recommend treatment if at any point she no longer thinks the nevus is benign. I left her office feeling hopeful.
Worrying does not empty tomorrow of its troubles, it empties today of its strength- Mary Engelbreit
I had routine appointments with Dr. Kurli for 3 years. They started out close together at every 3 months so she could get accurate baseline measurements. Eventually, the time between appointments got longer. I left reassured each time because my nevus was stable and not showing any change. I usually went to my appointments by myself and got used to hearing Dr. Kurli say, "This is good. There is no change."
On January 30, 2019, I went to my appointment relaxed as always, assuming it was going to be the same old diagnosis of suspicious but benign choroidal nevus. But that is not what happened.
Dr. Kurli did all of the standard tests to measure the size, thickness, color, reflectivity, and fluid levels of my nevus. At first, she said it didn’t look too much different but she said, “have I told you that I don’t like it?” and then later in the appointment she said, “have I told you that I have never liked it?”. She had me do another angiogram test where they inject dye into my bloodstream via an IV and take pictures of my eyeball for 5-7 minutes. This test seems to be more informative because it was at this point in the appointment I got the news I had been dreading all these years. She was changing my diagnosis from nevus to Ocular Melanoma and I would need to begin radiation plaque treatment in 3-4 weeks.
It’s not what happens to you, but how you react to it that matters
She showed me pictures from one year ago and pointed out how the perimeter had changed. She started to talk about a treatment plan and while I was able to follow along I could tell that I was getting more anxious and emotional. My ears felt hot, my hands started sweating, and I could feel the anxiety in my heartbeat. I asked if I could go get my mom from the lobby. We both thought she was there simply to be my driver after the appointment since my eyes get dilated quite heavily. Little did we know she would be there as my support system. It helped to have her there to write things down as Dr. Kurli talked and helped to have a family member there to hear what I was hearing. She quickly ran through the steps of the treatment plan moving forward. I had done enough research in the past to effectively follow along but I still felt overwhelmed.
In the next 3-8 weeks, a physicist in California will design a custom gold radiation plaque for my eye. I will have a number of doctor appointments that include a full body PET/CT scan to confirm if there are any other cancers in my body, a consult appointment with Dr. Maagas who is the radiation oncologist. He will walk through the radiation portion of my treatment and follow up on the PET scan. I will have a surgery where they sew the radiation plaque to my eyeball that will administer concentrated radiation for 7 days. I will need to be somewhat in isolation to minimize my contact with family and pets but I can wear a lead patch if I am near people. Dr. Kurli will decide during surgery if it is safe to do a biopsy that can be used for genetic testing. The information from the biopsy can determine the class/type of tumor and risk level of metastasis. I will then have a second surgery to remove the radiation plaque. The doctor appointments will continue with an eye appointment 2 weeks after surgery and a 3 month PET scan. My journey will continue with regular follow up appointments with Dr. Kurli, Dr. Maagas, and PET scans.
Having a support system is like having a safety net below you at all times
My mom was a blessing at that appointment. She stayed strong for me, hugged me and gave me a momma kiss. Thankfully, Rick works near Dr. Kurli's office so he was able to leave work and take over getting me home. Rick and I stopped for lunch together, but I barely made it through the meal. I cried a couple of times but I felt warm and safe being able to hug and kiss Rick. The rest of that night was a bit of a blur. I think I was kind of numb from the news because I wasn’t super emotional. We shared the news with the girls at a very high level and told them I would be having surgery on my eye soon. They are fully aware of my nevus and that it is monitored closely. They asked a few questions but didn’t seem too interested in knowing more. We plan to share more information over time in digestible chunks for their age level. The girls had Mid Week Mania at church that evening so it gave Rick and I an opportunity to spend time alone and talk. I didn’t really want to make a bunch of phone calls so Rick and I shared the news with our immediate families via text. I was so worried about work, so I called my boss and talked through it with her. I told her that I would be taking time off work for the procedure and for doctor appointments. I knew she would be supportive and understanding. I didn’t sleep well that night and only got about 4 hours of shut-eye. I was emotionally and physically exhausted.
Then I saw a rainbow
Tonight, as I was writing this blog Rick called me outside to see the most vibrant, beautiful, and full rainbow. I was stunned. I just put my hands in the air and my face to the sky. It felt like it was a direct message from God.
And God said, “This is the sign of the covenant I am making between me and you and every living creature with you, a covenant for all generations to come: I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth. Whenever I bring clouds over the earth and the rainbow appears in the clouds, I will remember my covenant between me and you and all living creatures of every kind. Never again will the waters become a flood to destroy all life. Genesis 9:12-15.
I will always remember God's faithful rainbow during my darkest days.