Looking back and forward

On March 5th, 2021 I underwent Gamma Knife surgery to target a brain tumor. Very few things can prepare for that moment and experience. The previous few days were filled with pre-operation appointments and scans. The morning of the surgery a mold was made of my face. I was told that because of the position of the tumor they did not need to put a halo on me. A halo is essentially a metal apparatus that’s literally screwed into your skull to make sure you don’t move during the surgery. Let’s pause there…screwed-into-your-skull. I’ll admit that part freaked me out and went into full research mode with google and talking with other patients who had been through the procedure. But at the end of the more than slight panic attack, lasers need to be very precise. Due to COVID restrictions at the time, Brandon had to stay at the hotel across from the hospital. I would walk down there alone, put on a brave face, and when ready walk back to our room. The truth was that I was terrified…not so much of the laser beam but of the possibility of it not working.

During the procedure and most of my scans I put myself into a deep meditative state and try to block out everything else. I needed to push every worry and concern out of my head and just focus on that moment. I knew it would be a blur afterwards and asked my doctor to take a few pictures as they were prepping for the gamma knife. Yes I did get to keep the mask and joked later it’d make a scary Halloween costume. Right now it’s put up on a shelf in the closet as a reminder of the battle I made it through. In all seriousness it almost doesn’t seem like it happened or was real.

Almost a year later I’m writing to keep busy between my tests and scans and reminding myself of the stops on journey. Scans after the surgery indicated that the tumor had swelling around it as a result of the gamma knife. Some scans showed slight increases in size due to swelling while others showed shrinking. The overall impression was stable. Unfortunately without a more invasive surgery they don’t know if the tumor is now dead tissue or not. What they do know is that we can watch and monitor.

For Melanoma, as of 2018 the five year survival rate for stage 4 is 22-27%. The type of immunotherapy I had has a progression free rate of 34%. Gamma Knife surgery success rate of 90%. What does all this mean? For five year survival it’s 1 out of 4 people. Immunotherapy working is 1 out of 3. So far I’ve defied the odds and have gotten this far. It’s been 6.5 years since my first surgery at stage IIB, 5 years since stage IV diagnosis, and 3.5 years since completing immunotherapy.

In November my oncologist told me to enjoy the holidays and not worry about Melanoma. Not worrying is a very hard thing to do by the way. Knowing that in a second that word “stable” can change creates a lot of uncertainty. I soon began to look for more experiences. I do not like the phrase “bucket list”. Instead I prefer “adventure list”. I have had many adventures and began to explore the idea of several more. The phrase “tomorrow is not promised” and “plan for the future but also plan for this moment” echoed in my ear as I began to explore the possibilities.

I wanted to celebrate. I wanted to celebrate the end of my 30s–a decade like no other where I was diagnosed and battled melanoma three times eventually being stage 4. So when the opportunity for a great deal to visit Tuscany came up I jumped.

Planning experiences in Italy is almost like a kid in a candy shop. It’s the okay we have to come home sometime part that’s limiting. What images come up when you close your eyes and think of Italy? A pasta making class in an Italian kitchen while sipping wine, walking under acres of olive trees, grape vines stretched for as far as the eye can see, hiking through the woods on a truffle hunt and cooking those truffles in an unforgettable meal. The adventures have no end. It’s taking a moment to fully appreciate that the brick you’re walking on is hundreds of years old and will be here for hundreds more.

A friend had also recommended a group called First Descents. This non-profit organizes groups of young adults who were diagnosed between the ages of 18-40. I had applied before the pandemic and due to the cancellation of the tours during COVID, have been able to join the group at almost 40. There were different options and locations to choose from with the intent of being adventurous and pushing you just a bit outside your comfort zone. It’s also a space to shift your perspective, heal, and move forward on whatever path is ahead. I’ve chosen three different adventures for whitewater kayaking and will find out in a few weeks which one is my match. I’m very excited for this upcoming.

The journey has been like going to an amusement park full of rollercoasters when you don’t like heights. It’s being put in a line for the ride not knowing if it’s going to be a kiddie ride or be the scariest thing of your life. Hey you’ll find out when you’re on the ride. Or being on a smooth track and then suddenly in a free fall spiral. The sheer unpredictability of not knowing what is next for me has been one of the most challenging parts. You mean I can’t schedule this or have a list of things to bring with me to be prepared for any type of ride-tame to free fall? So what do you do when you’re in line nervous about what may happen on the next ride? You start thinking about the ice cream you’re going to get after the ride. How you’re going to be brave, do the best you can, and later there will be ice cream with sprinkles. Slightly delusional but you get the point.

In keeping with the rollercoaster metaphor, what is a low hill for one person is Mt. Everest for another. Everyone experiences it differently and has their own way to process it. Someone can tell you about their day at the amusement park and how “scary or tame” the rollercoasters were and where to get the best ice cream…but it’ll never be the same as your own experience. There’s too many factors and differences. Instead, what I’ve learned from other people’s experiences is what to look for and what questions to ask. Each person takes their own journey and I can learn from their experiences and hopefully help others.

Almost time for another set of scans and more appointments in the next few days. And yes, I’m thinking about the ice cream that’s waiting for me in my hotel freezer and maybe the gelato that awaits in Italy.