Yes, I am definitely an introvert, but I feel that it is important to now share the adventure that I started 3 years ago.
As most of you know, this last year has been quite a year for me! It all started when I was helping to manage a most fantastic team at Destination Imagination Global Finals 2017 in Knoxville. I called my husband, a high school STEM teacher, daily to check in and make sure all was well. One night during one of those calls, my life was forever changed. I learned that he had driven himself to the ER after school with awful stomach pains and was waiting for the doc to send him for some scans. Since he had little battery left on his phone, we decided that he would conserve power and call after the scans. That is the last time I spoke to him. The next call was from his doctor, urging me to come immediately to the ER. I was 550 miles away. The final call from the doc was to inform me that my husband had passed, in surgery, from an aortic aneurism.
That was on a Thursday. The previous Monday, while driving to Tennessee with the team of 7 students and their parents, I received a call from the human resources office of my school district. I was a gifted and talented resource teacher in a Title 1 elementary school. HR told me that I had lost the Title 1 funding for half of my teaching position, and would have to choose between working part-time or returning to the classroom as a full-time grade level teacher. They wanted a decision by Friday, knowing that I was going to be with the team and parents 24/7 for 7 days.
I did not get back to them by Friday. I was planning my husband’s memorial service. A few weeks later, I retired. I later found out that the funding was spent to purchase laptop computers.
And then there is the tumor. Yes, a brain tumor. It was the first day of teacher planning 2015, that I met with the neurosurgeon. That was also the day we stopped at the animal shelter and met our dog. An energetic puppy that had been found wandering the streets. A puppy that was programmed to walk on a leash, sit, stay, fetch, roll over, and lay down. A dog that has so much energy he would wear out a marathoner.
Back to the tumor. This is what I do. I think about it, then veer off in a totally different direction. It keeps me sane. So does DI, but that’s a whole different narrative.
It all started at least 5 years ago. The vision in my right eye was not normal. When I read, the letters blurred in the center, but were fine on the periphery. My left eye started to do double duty. I went to my local eye doctor during summer vacation. I was told that I probably had cataracts and should make an appointment with a specialist.
I went to the specialist who ran tests, dilated my eyes, confirmed the diagnosis, and was ready to set a date for surgery.
Woah, not so fast! This all seemed all too convenient, too quick. It’s only a cataract. It can wait. I am not the kind of person who will rush into anything without thinking about it and doing some research. The following summer I made an appointment at another eye clinic for a second opinion. Just to confirm. It took only a few minutes and I left with an appointment to see an optical neurologist. Well, that was a surprise. More tests were required and now I had a date with a MRI for a scan of my head.
That brings me to the first day of the 2015 school year. The brain tumor, slow growing, supposedly 99% benign, was pushing on my optic nerve, compromising my vision. What happens now? I was informed that there were 2 options, brain surgery or monitoring. After some discussion, it was agreed that more data was needed, and that we should monitor for 6 months. I would have another brain scan and we would compare to see if the tumor has grown. Seemed reasonable to me. I went on with my life, my job and my puppy.
Some teachers have a life outside school. Some teachers are able to leave school and leave it all behind. I was not one of those teachers. Never have been. It was a profession, a calling, not a job I could ever turn off. Always thinking about the kids, always planning lessons that would hopefully inspire. Always thinking about what I could do to make the classes more interesting. My goal was to teach until I was 70. I never cared to retire and do things for myself. That seemed selfish when I could be teaching and perhaps making a difference in someone’s life. I only told one teacher at school about my diagnosis, just in case I started acting abnormal.
I kept my 6-month appointment with the MRI, neurosurgeon, and optical-neurologist. There was no change in the tumor and my sight had not deteriorated. Decision was to wait another 6-months, then another, and another. Two and a half years passed. Each time I was told the tumor had not changed, or if so it was insignificant. Early on I did ask what surgery would entail, and was incredulous when the possible procedure was described. Even changed to another neurologist at the same world-famous medical institution. I was now told that the tumor was inoperable. There was never any other discussion or counseling. We subscribed to the wait and see methodology. In hind sight, this was probably not the best thing to do.
At my last appointment, in February 2018, the neurosurgeon looked up from his computer, which he rarely did, to tell me that the tumor was, indeed, inoperable and I should meet with a radiologist. Radiation might be able to stop the growth of the tumor, but my damaged eyesight would not be restored. I made the appointment to discuss this new development. The radiologist was ready to sign me up, but I was not ready to start this medical procedure without doing more research.
My research included a second opinion. It brought me to a renowned neurosurgeon out of state. I invited a friend to join me and we went for day. This doctor looked me in the eye, took my hand and asked me how many nickels were in $1.35. That was unexpected! He listened to me and seemed to care about what I said. My mind was completely blown when he told me that he would operate, and definitely not do radiation. If the optic nerves were just compressed and not damaged some vision might be restored. I now had two opposing medical opinions on how I should handle my tumor.
This was quite baffling to me. I am not enthralled with the medical profession. I fainted when I went on a prenatal hospital tour back in the 1970s. I never have watched medical movies or shows on television. I barely tolerated taking my daughters to the hospital for asthma attacks or gymnastic injuries. But over the years I did toughen up and was able to handle my daughter’s mastectomy, my mother’s numerous hospital stays and my husband’s emergency appendectomy, heart by-pass surgery, and heart attack. But brain surgery?
I was conflicted and spent months researching and trying to understand how two of the best medical institutions could give me such opposing opinions. Last Easter I finally told my daughters about my diagnosis. Why didn’t I tell them years ago? It was all about timing. When I was first diagnosed both of my daughters were in their third trimester of their first pregnancy. There was no need to worry them. Then as time went on, there was really nothing to tell. I had no details for them. According to the doctors, the tumor might have been there for many years and might not grow and cause any significant issues. Okay, hindsight: I should have told them and I should have requested a second opinion much earlier.
I needed a tie breaker. I needed a third opinion. I was told by an optometrist that I was ‘doctor shopping’, and that was unacceptable. If it were you, what would you do? Blindly follow what the first professional says, or thoughtfully consider all options? After some discussion, I believe she understood why I was seeking another opinion.
The third opinion brought me to another state and another renowned medical institution. Bottom line: the doctors there agreed with the second opinion. An operation would be the preferred strategy to deal with the tumor.
It is my understanding that there are many ways to surgically remove a tumor from the brain. It depends on the location, the size, and the kind of tumor. There are new surgeries that go in through the nose or eye, leaving no visible scar. There are surgeries that leave a little scar above the eyebrow. Then there are surgeries that cut your skull open, remove bone, move your brain, and diminish the tumor. That’s the kind of surgery I will need.
So, there it is. I will need brain surgery.