Jackie’s Cancer
Journey

I noticed sometime in October that I was not seeing very well especially at night. I had Lasik eye surgery done in 2003. I had always heard that after 10 years you sometimes need a touch up. While I was home for Thanksgiving, I asked my mom, who is a school nurse, to check my vision. My left eye was 20/40 and my right eye was 20/30. She told me I should probably go to the eye doctor. Then I noticed in practices that I had to really focus in order to catch a ball coming from across the court. My depth perception seemed off. This started to bother me.  

I had not signed up for vision coverage on my insurance that year, so I thought maybe I would wait until the following year to go see the doctor. I decided to flip a coin. I know this sounds crazy but I have a system of flipping best two out of three when I cannot decide on something. It told me to go to the eye doctor. I then asked our secretary, Terrie Coulter, if she knew of any good eye doctors that could either do Lasik or put me into contacts. She sent me to Mattax Neu Prater. I called on a Monday and if I could not get in on our day off, which was Wednesday, then I was just going to wait. I knew my chances were slim. The secretary who took my phone call said it now gives her chills. Right before I called, she had a cancelation and was able to get me in on that Wednesday.

I headed to Mattax Nue Prater on December 13th to see Dr. Matt Smith. My intentions were that he would either put me in contacts or set up Lasik surgery. While there, they inform me that my left eye is 20/50 and my right eye is 20/30 and for some reason they cannot correct my left eye. They end up dong two hours of tests and tell me that they found a tumor in my left eye. They scheduled me the next day to see their Retina Specialist. Dr. Neu told me that he has never diagnosed this before but he was almost positive that I had Ocular Melanoma. He told me that they had three main specialists in the country for this rare cancer and one of them was in St. Louis. Immediately I got in to see Dr. Brad Smith the next day. My mom drove six hours to Springfield on Thursday night. She and my former college roommate, Carly Stubblefield, who is like a sister to me, drove me the next morning to St. Louis.  

After four hours of testing, Dr. Brad Smith confirmed that I had a tumor located behind my left eye and it was located on my optic nerve. Dr. Smith promptly and calmly proceeded to discuss all of the treatment options with me. He said if it was him he would do the plaque radiation. He strongly encouraged that I get a second opinion as well. I also had to get a CT scan of my chest, abdomen, and pelvic area. I had that scheduled for January 2nd. 

I am fortunate that I have an uncle who is an eye surgeon in KC. He thought it would be a good idea to get a second opinion in Philly with Dr. Shields. The only thing she treats is Ocular Melonoma and she has performed the most procedures of anyone in the country. Plus, my uncle went to school with her at Notre Dame. Before making the trip to Philly, I got my scan results on the 2nd and the cancer had not spread.  Thank goodness because the survival rates of OM drop dramatically if the cancer has already spread throughout the rest of the body... so much so that you could have only 2-8 months remaining of life. 

I flew to Philly on January 7th and met my mom there. I saw Dr. Shields at 6 am on Monday January 8th. Another four hours of testing and she concluded that my best form of treatment would be the plaque radiation. I had planned on staying there and having the procedure done on Thursday. To make a long story short, I could not get in-network coverage from my insurance and Dr. Shields would not bill my out of network coverage. Therefore, they wanted me to come up with $50,000.00 cash on Wednesday.  I was frustrated to say the least by both my insurance provider and also with Dr. Shields. I did not feel like I was treated like a human. I decided that I would take my services elsewhere. I ended up flying home with my mom to my hometown on Friday so I could regroup. 

I drove back to Springfield on Monday, and then went back to trying to figure out a plan. I ended up getting back on the schedule with Dr. Brad Smith in St. Louis. He scheduled me to see my radiation oncologist, Dr. Edwards, on February 1st. The plaque with the radiation seeds was inserted in my eye on February 2nd. Dr. Smith knows I live a very active life style being a basketball coach and a retired professional athlete. Dr. Smith decided to cut out a notch in my plaque to not radiate my optic nerve directly. Without the notch it would of wiped out all of my forward line of site.  After the plaque was in place, I went into the hospital and had a protective shield placed over my eye.  I was to stay in the hospital in isolation until February 8th.  

I was allowed thirty minutes of visitors a day and could not leave my room.  I was so sick I did not want to though.

I was so grateful for my mom, my dad, my sister Roxanne, Carly and our good family friends in St. Louis, the Naney’s for coming to visit me and for providing support for my mom. A few other close friends stopped in as well. I was worried that I would go stir crazy but I ended up way too sick to want to do anything.  I finally started feeling a little better the last couple of days in the hospital.  I brought along my road bike and had it on my trainer.  I could not even think about getting on it until the last couple of days. I am addicted to working out; I never miss a day unless I am on my deathbed, if that tells you how brutal the treatment was.  

I went back into surgery Thursday morning to have the radiation plaque removed. I bounced back quickly. I drove back to Springfield with my sister immediately after. Then was back to work at MSU on Saturday.  I wanted to try to miss as little as I could since I was a basketball coach at MSU and we were in the middle of season. I was also craving normalcy and I wanted to keep busy to take my mind off the situation.  My first follow up with my eye doctor was in March. All he did at that appointment was test my vision and do an exam on my eye. My vision was 20/100, so I had lost quite a bit. The good news was my right eye tested at 20/20.

I went to see Dr. Smith June 18th and he was able to scan the back of my eye at this point to see if the radiation is working.  I still had orange pigment and fluid, which meant active cancer cells but it was going in the right direction. I had visioned my tumor being gone at this point.  It takes the radiation longer to work.  My tumor will always be behind my eye, but eventually it will be dead. My vision had improved to 20/70.  This will probably be the best it will be and then will deteriorate for the next five years due to the radiation. Unfortunately, it is non-correctable.  

In July I was having this off and on debilitating pain right under my right rib cage.  Normally I would not be as worried about it if I did not know that Ocular Melanoma usually spreads to the Liver.  The pain I was having was right in that area.  I even took myself to the ER one night after dealing with the pain since 9 am.  It was such a zoo in the ER that I decided to just go home.  I texted our team doctor Dr. Hough and told him what was going on.  He ordered an ultra sound and it showed that it was my gallbladder.  I was never so relieved to hear that it was my gallbladder. I had it taken out the next day, and felt so much better physically and mentally! I got my full body scans to make sure the cancer had not spread on August 2nd. My radiation oncologist Dr. Edwards called the next day to let me know that they were all clear. I will do this every six months.  

I am still very early in my cancer journey but it has already made me better for having gone through it.  I was so touched and grateful for the outpouring of support I received.  I know I will never be able to pay it all back, but I will definitely pay it forward. I am pushing myself to do speaking events.  Even though public speaking is tougher for me. If I can lift just one person up during these talks that might be going through adversity, then it is worth it.  We all go through adversity/struggles, we just have to do our best to turn it into a positive.

My basketball career has given me a platform. I have been contacted by numerous people that are either farther along in their OM journey or are just diagnosed.  Since this is a rare cancer, many don’t know anyone else with it. It is been very fulfilling to provide support for each other as we walk through this journey together.  

I am also getting involved with Relay for Life to help raise money for our cause and want to do more, potentially start a foundation. I just don’t know what exactly. I make relationships a priority and my faith continues to grow stronger. I am also much better about being present and enjoying the moment.

That is all we are promised!