Today is my 56th birthday.
If you had asked me a week ago how I’d be spending it, there is zero chance that my answer would have been correct.
Instead of preparing to launch a pre-sale campaign for my 5th book, A Good Boys Journey, as we had planned, I will be sitting in a patient room at Penn State Health in Hershey, Pennsylvania, waiting for my wife to be taken for a kidney biopsy that was originally scheduled for yesterday.
Sandy and I have been workamping at the Hersheypark Camping Resort since the middle of May.
One of the perks of our employment is free entry into Hersheypark. I figured at some point this summer; I would hop on one of the 16 roller coasters at the park. However, never in a million years did I expect the roller coaster ride that we’ve been on since July 9th.
That was the day Sandy was admitted to Penn State Health in Hershey.
She had been feeling fatigued, had swelling in her ankles and legs, and had inconsistent urination for the past couple weeks. She has been on medication for hypoactive thyroid for years. We initially thought her thyroid was off, and we just needed an adjustment in the dosage of her medication. Her doctor in Florida had been consistently sending her for blood work every six weeks. Depending on the results, he would change the dosage of her medication. The last time she had blood work done was in Franklin, Tennessee on April 18th. After her doctor got those results back, he told her that she didn’t need any additional blood work until we returned to Florida sometime in December. Naturally, with that history, we just assumed that she probably needed to have her thyroid medication dosage adjusted.
So, it was with that thought process, she contacted her doctor on Monday, July 7th and requested an order for blood work. That blood work was done on July 8th.
On Wednesday morning, July 9th, as we were getting ready for work when her doctor called and told her she needed to get to the nearest Emergency Room as soon as possible for more testing because her kidney levels were out of whack.
This was the beginning of one of the wildest roller coaster rides we have ever experienced.
We arrived at the ER at Penn State Health in Hershey shortly after 9 AM. We were taken back around 10 and the staff started running various tests. Around 2 PM, the attending doctor informed us that there were just too many tests to run to be able to do it from the ER, so she would have to be admitted. Around 9 PM, she was placed in a room in the Emergency Observation Unit, and the tests continued. Another 24 hours later, she was moved into a regular room on the 6th floor, the tests just kept coming, yet we had no idea what the cause of her elevated kidney level was.
Finally, after almost a week of countless blood tests, CT scans, ultrasounds, an MRI, EKG, ECHO cardiogram, and a blood transfusion, among other things, we finally received a diagnosis.
She has an extremely rare autoimmune disorder called Vasculitis ANCA or ANCA Vasculitis depending on which Google search you’re on. I never heard of this before Sunday. Not one person who I have told about it has heard of it either, which is no surprise considering only about 12-15 people in the entire world get diagnosed with this disorder per year. From the day I met my wife, I knew that she was one of a kind. She really didn’t have to prove to anyone how rare and special she is, but, hey, here we are.
The biopsy today should determine how aggressive it is.
Treatment with steroids has started, but the dosage may change after the biopsy results are back.
Waiting has been the hardest part.
Through it all, we have remained positive, knowing that brighter days lie ahead. Don’t get me wrong, as I’ve stated several times, it’s been a roller coaster. We both have good moments and bad moments at times, but we do seem to snap out of those bad moments quickly and start looking at the silver linings that have surrounded us throughout being in the midst of this dark cloud.
My entire life, music and writing have been the two mechanisms that I’ve used to cope with emotions. Getting outside and moving has also been a coping mechanism, but not to the extent of music and writing. Some of that writing may end up on a blog, like this one, or in one of my books, but other times, it’s writing that only I see. Either way, it soothes my soul.
Music is even deeper. I don’t just listen to music, I feel music. There are times when I listen to a song that hits me in a special way for the first time where I have to listen to it again. However, the second time I listen to it, I listen with my eyes closed, so that I can truly be transported to where the song wants to take me in that moment. I had hoped to be a musician when I was younger, but I was just never gifted enough to master the bass guitar as I would have liked, so after a few years of being a bad bass player, it just stayed in its case until I finally gave it to my nephew, Donnie, who is an incredibly gifted musician.
Going through this situation has been no different. Music has definitely helped me get through some of those low moments on this ride. One song in particular has been, “Brighter Day” by Michael Franti and Spearhead. My good friend, Manas Itene, is the drummer for Spearhead. When they perform the song live, Manas gets out from behind the drum kit and takes center stage with Michael and sings some parts of the song. The recorded version of the song is uplifting; the live version of the song is downright emotionally moving.
The other morning, as I was preparing to head into the hospital, I saw a reel on Instagram that Manas had posted of them performing the song live. I was in one of those low moments when I watched the reel, and hearing even just a short segment of the song made me emotional but also uplifted me at the same time. I immediately sent Manas a message telling him that the timing of that reel and that song was impeccable. The power of music is real. I then looped him in with what was going on with Sandy. I also sent the song to our family text group that we’re using for all the updates on Sandy’s condition. At that moment, we still had no idea what the diagnosis was, so I felt everyone in that family group could probably be reminded that brighter days were in our future.
The message of the song is clear…
Don’t give up when your heart is weary
Don’t give up when your eyes are teary
Don’t give up when your voice is trembling
When your life needs mendin’
Don’t give up when the hurt is near you
Don’t give up when the world seems to be broken
I’m still hopin’
With my heart open ayy ay
For a brighter dayDon’t give up when your pride is bruised and
Don’t give up when you fear you’re losin’
Don’t give up in your darkest hour
Cause you got that power
Don’t give up when you feel divided
Don’t give up I’ll be by your side unbroken
I’m still hopin’
With my heart open ayy ay
For a brighter day
Later that day, Manas called me to see how things were going. I was in the room with Sandy when he called, so I put him on speaker, so that we could both talk to him. It was an emotional conversation, but Manas had one clear message for Sandy (and me) – Stay Positive! Everything is going to be alright, but we just need to stay positive. Manas called me again the next day with the same message. I was back at the RV when he called, but I passed it on to Sandy right away. Manas is one of those incredibly special humans who will just pick up the phone out of the blue to check in on us. He called me last year because he knew we were in Alaska. The band had just landed in Anchorage for a couple shows, and he wanted to see if we happened to close by. Unfortunately, Alaska is a big place, and we were about five hours away. He called me right after we arrived in Hershey, just to see how we were doing. He insisted that we stop by his house when we were in San Francisco and made us lunch. That’s just the type of person he is. Genuine and real.
We are looking forward to brighter days, but we are also very grateful for all of the good things that have come from us being in this place during this season of our lives.
Being in Hershey, we’re close to our family. We’re grateful that our daughter, Stephanie has the summers off, and has been in the trenches with us just about every step of the way. Our coworkers, supervisors and the entire staff at the Hersheypark Camping Resort has been an absolute God send for us. They have been supportive, understanding, and genuinely care about our well-being. Our new workamping family there has been nothing short of amazing. They’ve given me rides to and from the hospital, sent a card and cookies for Sandy, but most importantly, everyone from the very top down has taken time to just listen to me talk, sometimes rant, and in moments like this, I don’t know if we, as humans, realize how important just lending an ear can be. Time and attention are the most valuable asset you can ever give another person. It truly is priceless.
The phone calls, text messages, and voice messages expressing prayers, thoughts, and support that we have received everywhere from Germany, Australia, and all across the United States have reminded both of us how truly blessed we are to have this huge circle of friends and family who love and support us. Real hugs, virtual hugs, shared tears, mutual anger at times, but most importantly, love and laughter have kept our spirits high.
So, yes, this birthday isn’t what I expected it to be, we’re still in the storm for now, but we certainly know that brighter days are on the horizon. I’m still very grateful that I get to spend this birthday with my wife. As long she is with me, I don’t care where we are, hospital room or somewhere else, I am good when I’m with her.
As Manas would say – “BIG LOVE!”
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