When we originally came to Rochester, Minnesota’s Mayo clinic in late July, my initial three appointments quickly grew to nine and even after that, I still had a couple more that I had to postpone in order to catch my scheduled flight home. And while my initial trip gave me a lot of answers regarding a myriad of health issues. It brought up new one’s that I, myself may not have been able to answer. Still, I knew I was getting the best care ever and the doctors and nurses I saw looked deeper than anyone else had ever done when it came to my medical history.Shortly after returning home to Seattle, a second, or follow up trip was scheduled and booked. With an understanding that my two new appointments could easily multiply and stretch out into a week, we booked our hotel for an entire week. Strangely enough, our first appointment with a neurology specialist took me aback by concluding that any and all issues I’ve been experiencing in the past years were caused by the radiation I received when I was twelve. The same treatment that was given to save my life has been the cause of just about every issue I’ve had since. Not the answer I was hoping for, but one I can’t say was very surprising. After a quick blood and urine test, I was off to my second appointment with a neurosurgeon who looked as if he just came from the cutting room. By then, I had already been diagnosed and endured one of the longsst doctor visis of my adult life. So, we were both kind of phoning it in.
Still, we had five full days to explore an area we have gotten to know and love in a very short time. Later that week, we left knowing the cause of my issues while having the best Fried Chicken we have ever enjoyed at The Post and the tastiest Deluxe Cheeseburger at Forager Brewery. While I’m not exactly looking forward to what will come my way as far as my symptoms go. I’m grateful to have some answers and ecstatic over not having to receipt my full name and date of birth every time I approach a front desk or get called in for my appointment. I’m also grateful for not having to go over my medical history again for at least a year. Maybe the next time they ask, I’ll say “You’re the fucking doctor. You got that shit right in front of you.” Until then.
After months of hard work trying to obtainn medical records and test results from hospitals in both New Jersey and Washington state. I was finally able to secure my appointments at the Mayo Clinic, book a hotel and flight to Rochester, Minnesota. It was a frustrating process that took months. A frustrating time where I often questioned whether or not I would be around long enough to to walk through the doors of the storied institution.
Due to the fact that my first appointment was at 7:30 am Tuesday morning. My wife and me flew in on Monday, which gave us an entire day to wander around and explore an area we had never been before.
Though I didn’t feel that going to the Mayo Clinic would help me find any new answers or a magical cure all for the progressing issues I’ve been experiencing. I arrived open minded, knowing that I would be seeing the very best doctors and getting the kind of concentrated care I had never before experienced. I’d also be giving my wife the peace of mind she more than deserves.
From my first appointment on Tuesday morning. I felt as if I was experiencing a level of care like I had never before seen. The answers of my questions were addressed and answered with a a great deal of detail and explanation. Before my first appointment ended, the initial three I had scheduled had morphed to six and by the time the days second one was over, I had learned more about my condition in a few hours than I had in the two years since being diagnosed.
As the week wore on the amount of appointments, test and waiting began to wear me down both physically and emotionally. After a blood and urine test, an MRI and a CAT scan the doctors all agreed that the calcification my my brain was creating my balance and speech issues, but questioned whether or not a I had FAHRS. Though not concluded, it seems as if the radiation for a brain tumor I had as twelve year old might be the culprit. Where I had felt so positive during my first couple of days there. the last two days there left me with a much better understanding of my condition but so many more questions than I arrived with.
What’s most bittersweet about all this is I will be returning for another round of appointments and tests in late September. Not to be negative but, I sometimes with that the original diagnosis and death sentence I received (a month to live.) when I was twelve, would have come through. I, nor my family and loved ones, would have to experience and suffer from all the bullshit that followed. And while I’d describe my trip to the Mayo Clinic as very positive. I wish I’d be returning home with a more detailed and defined outline of things.
Since making my appointment with Rochester, Minnesota’s Mayo Clinic close to a month ago, I’ve caught myself referring to the weekend of 07/27 – 07/28 as “my last weekend.” Though not intended to be morbid or prophetic of any kind, I somehow equate this long awaited trip to be somewhat of an ending or beginning of some sorts. These next few days will mark what I see as the final chapter of my search for answers. After several years of my troubling symptoms being written off by my asshole doctor as post brain tumor, post stroke symptoms. I finally sought treatment outside his umbrella of short sighted ignorance which eventually rewarded me with the knowledge that I had another brain tumor and later finding out that I had a rare, virtually unknown neurological disorder known as Fahrs. One that had no cure or known treatment.
While I do expect this coming week in Rochester to be helpful. My expectations regarding any breakthrough information are almost non existent. Instead, I’m hoping for a sense of closure, as in ways to adjust my lifestyle while moving forward. instead of looking back in anger, asking why. I hope to live in the present, moving and thinking forward. Adjusting to and facing any challenges this disorder might throw my way and tackle the head on. In the end, what’s life without living?
With another birthday and wedding anniversary in my rear view window and a trip to Rochester Minnesota ‘s Mayo Clinic just days away, I’ve still had plenty of time to reflect on life in general. The things and people that bring me the most joy. How my love for exploring and seeking out adventure and beauty in places that others might not tred. Despite age and an ever changing bag of bones. I still want to hop fences and climb trees. I still see “Do Not Enter” and “No Trespassing” signs as open invitations and warm welcomes to step inside and take a look. As the days grow closer to my trip and what I consider my final search for answers regarding my condition, I find that I’ve become calmer and more accepting of what’s been a progressive downhill when it comes to my symptoms. There are still many fences to hop and trees to climb . Though I might have to find new ways to do so, I’m more than up for the challenge.