Why I Walk | Kevin
Hearing that someone you love has a brain tumor is more terrifying than it even sounds.
My husband Kevin, who was, and still IS, a strong, proud, determined, and successful small business owner, was diagnosed with a rare tumor called a papillary craniopharyngioma on Jan. 25, 2018.
In the hours, days, weeks, months, and years that followed, we learned just how serious, and dangerous his condition was. We’ve had to become experts in the fields of brain tumor research and treatment, the endocrine system, and the healthcare insurance system. We’ve also had to make some really difficult decisions along the way, not only about his medical care, but also about the business and our life.
Kevin’s tumor is typically slow growing, but considered by many doctors to be difficult to treat and manage long term not only because of its location at the base of the brain near areas that are vital to basic human functions and life, but also because of its tendency to grow back, in some cases over and over, despite repeated surgeries and radiation treatment.
When Kevin was diagnosed, the tumor was 4 cm large, about the size of a walnut. The tumor was pushing so hard on his optic nerve and chasm that it had robbed him of roughly 50 percent of his peripheral vision. On the morning of the surgery, he was dangerously close to entering a comatose state.
Kevin endured two surgeries, the first on Feb. 5, 2018 to remove the tumor and a second on Feb. 18, 2018 to repair a brain fluid leak at the surgical site that allowed massive, life threatening amounts of air to rush into his brain.
He remained hospitalized for about a month, half of which was in the ICU. He suffered from a host of complications from both the tumor, which caused brain swelling and crushed his pituitary gland, and the surgeries, which left him weak and with searing headaches and dizziness that took nearly two months to subside.
Despite all of that, we now consider ourselves exceedingly lucky. Kevin has received his medical treatment at arguably one of the best medical institutions in the country, if not the world. Immediately after surgery he regained all of his peripheral vision. Despite the pressure the tumor placed on vital parts of his brain, the only permanent damage was to his pituitary gland, and to a far lesser extent his hypothalamus and optic nerve fibers.
My husband is a tree service owner and professional tree climber. After his first surgery, his doctors told me that Kevin would likely never climb a tree again. Kevin was determined to prove them wrong. After just one month of in home physical therapy, he was ready to go back to work.
He had to start slowly, and had to pace himself, but by the end of March, 2018 we were starting to visit our crew on job sites. And in April I watched with equal amounts of pride and terror as he climbed his first tree post surgery, with the help of the crane.
Our journey during the past two-and-half years has not been without many twists and turns, highs and lows. By May, 2018 the headaches started coming back, and in June, after the first post surgery MRI scan, we were devastated to learn that part of the tumor was still there. In July we were told that the tumor was growing again, more rapidly than before, and was already dangerous enough that we had to have a consultation with doctors specializing in the fields of neuro-oncology, radiation oncology and neurosurgery. We were told we had to make a decision quickly, as the tumor was already threatening to blind him, and possibly wreak even more havoc on his already battle-scarred brain.
Conventional treatment for this type of brain tumor, as with many other types of brain tumors, is surgery and radiation, both of which can be very dangerous. There are very few drugs approved by the Federal Drug Administration to treat brain tumors, and, until very recently, the few that did exist have had limited success.
We were given three options – more surgery, radiation, or a clinical trial. Despite the odds, we ultimately chose the less conventional route of a clinical trial that consists of two oral chemotherapy drugs for a host of reasons, not the least of which was because the early findings from these particular trial drugs were remarkably successful for treating this type of brain tumor. From July 2018 to August 2019 we traveled monthly from our home in Jacksonville, Fla. to the Mayo Clinic in Rochester, Minn. for the treatment. The stress of Kevin’s illness was only compounded by the toll constant traveling took on our business, our finances, and, in our darkest moments, even our marriage. When we first started traveling to Rochester we were shell shocked — it was still hard for both of us to fathom that Kevin even had a brain tumor. But it was incomprehensible to imagine our future with this thing that seemed to always lurk nearby and refused leave us alone. The headaches, the fatigue, the pills – they were constant reminders.
But at our first follow up visit in Rochester we received our brightest glimmer of hope since our journey began — the tumor, was in fact, shrinking. And at the next follow up, more hope with the news that it was continuing to shrink. And so it went for 12 months until the tumor was little more than a grainy speck on an MRI scan of what doctors hope is merely harmless scar tissue.
The effects of the chemo drugs on Kevin’s tumor seemed to be nothing short of a miracle. But chemo is an intensely sharp double-edged sword. The compounding side effects of the drugs month after month crippled his immune system, ravaged his digestive system, and forced him to live like a vampire, preferring darkness to daylight, lathering on 100 percent sunscreen multiple times a day and layering clothing to avoid exposing even an inch of skin that was extremely sensitive to even the briefest encounter with the unforgiving Florida sun.
Over the course of the 12 months of treatment in Rochester we came to think of Minnesota as our second home, and the amazing people — doctors, Mayo employees, volunteers and staff members at the Hope Lodge where we stayed — as our second family. Our last visit to Rochester in August, 2019 was bitter sweet.
As of August, 2020 my husband is now one year post-treatment. The tumor is in remission, and Kevin is officially, and unequivocally, a survivor. There are scars, both internally and externally, and there are life long health issues to contend with because of the tumor, but, we can finally look forward to a future, albeit cautiously and with a great deal with reflection, without the constant fears that once haunted us.
A major illness, we have found in the past two-and-half years, has a profound impact on quiet literally everything. Brain tumors have the capacity to fundamentally change who you are as a human being. I’m exceedingly grateful that Kevin is still Kevin, perhaps in spite of the tumor. He is also infinitely stronger because of it. We also both have a new, very deep appreciation for life, and all the obstacles and joys that make up every precious moment of our time here.