Salty Zebra

  Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.  2Co 4:16-18 NIV      It's been nearly a year that I've been on this journey. Really, it's a continuation of a journey I've been on far longer, actually all my life.  None of it has been easy, but I feel like I'm past the worst bits.  Today I live in the reality that I have a brain tumor.  That's tough.  I also deal with the pain and challenges brought on by Ehlers-Danlos Syndrome and Lyme Disease.  My days are pretty simple, without room for complication.  80% or more of my energy is devoted to doing what I have to to maintain life.  Pacing is a tool I've had to learn inside and out, managing my spoons so to speak.

      Last Monday felt surreal. My husband and I kept saying it over and over the whole week.  I was supposed to have been undergoing brain surgery and then spending the week in the hospital, but instead I was home, with no idea what would happen next.  I had been told on Saturday at the Emergency room that I would receive a call from the Oral Maxillofacial Surgery Clinic ( OMFSC) on Monday and they would schedule me to be seen that day or the next. I was also told that the Neurosurgery clinic would contact me sometime this week to reschedule my brain surgery.  I received the OMFSC call before 10 am (the time at which my husband had said he would call if they hadn't) and was given an appointment for Tuesday afternoon. Yes, I asked, and no, they didn't have anything sooner.  More disturbing was the call I got from neuro saying they were looking at early May to reschedule the brain surgery.  That was really difficult to take.  First they tell me that the tumor is in a dangerous s

    The ten days leading up to my surgery date were full and challenging. We left very early Friday morning to drive across the state and share the news of my brain tumor with my brother and my middle son.  Our hope was to fly, but they were all full.  I think the drive was good for us though.  The mountains were absolutely beautiful. Snow, frozen waterfalls and lakes, everything seemed intensified, even more beautiful than usual.  As I sat in my brother's home that afternoon with him and his wife, knowing that I had to share soon, butterflies filled my stomach.  I couldn't believe how nervous I was. My heart was racing and I had trouble catching my breath. Finally my husband signaled me that I couldn't wait any longer and I needed to get it over with so I prefaced it with a request for secrecy regarding what I was about to share until all of my kids had been informed and then shared the news.  They were understandably shocked, but very loving and supportive.  We enjoyed th

    Ten days after I received the call letting me know that they found something on the MRI I was sitting in the office of a Neurosurgeon.  I have no doubt that God orchestrated the circumstances that had brought me there, including a friend who is also dealing with a brain tumor recommending this clinic. But how could any of this be real? Only a couple of people knew what was going on, but there wasn't much to know before this appointment. All we had were a few key phrases on the MRI Study Result and our dear friend, Dr. Google.  I went into the appointment with the impression that the doctor would either recommend watching and waiting, doing another MRI in six months and seeing if anything changed, or taking it out right away.  In previous encounters where the option was to wait or do something I have vastly preferred doing something, but this time it was different. I had read about the potential complications of surgery and I was scared.  Not to mention, needing to act right awa

We see it in movies and TV shows, but we always hope it will never happen to us. The phone rings and it's someone unexpected, a police officer, a relative, a doctor. They give us news we weren't expecting, and from that moment on our lives are forever different. And it's not just our future that's different. We begin to define our past as "before"and "after" this life changing news.  I got the call last Monday, February 27th, 2023. Ironically, it came just two days after the anniversary of another one of those calls, the one letting me know that my brother had died unexpectedly at the age of 40, two years ago. This time it wasn't my Mom calling, it was the ARNP from my neurologist's office. She was calling me at 5:30 at night the next business day after I had had a brain MRI. Right away I knew this wasn't going to be another, "Everything looks fine, we don't know why you're in pain all the time," call. That n