Sunday, July 19, 2020

Meningioma: My Odyssey to Wellness

I am a reborn man. I have managed to live my entire life without much concern about my health. Until a car accident a few years ago I had never spent a night in a hospital. I certainly had never encountered the condition that is the subject of this blog post - MENINGIOMA.

A meningioma is a tumor that arises from the meninges - the protective membranes that surround the brain and spinal cord. Although it is technically not a brain tumor, it is included in this category because it may compress or squeeze the adjacent brain, nerves and vessels.

I learned recently that most meningiomas grow slowly over a period sometimes of many years without causing symptoms. However, in my case as the tumor grew there were never any headaches associated with my symptoms and the symptoms were manifested so randomly that I had dismissed them as simply signs of old age creeping up on me. The reality was so subtle to me that the effects on nearby brain tissue, nerves or vessels were beginning to cause serious disability. My wife Patsy is the true heroine in this story, since she could discern what was happening to me so much clearer than I.

Many visitors to this page will be aware that I have not posted for a very long hiatus. I had lost my ability to find the motivation to express my thoughts on paper. My desire to write again since my retirement has been virtually gone.

My first symptom of note was the loss of my sense of smell some seven years ago. Then I fell asleep at the wheel while driving and totaled my car against a sturdy cottonwood tree, breaking six ribs in my back. No headaches were associated with the accident so all the imaging focused on my ribs and my chest. Had they checked for brain damage in that accident with a CT scan of my brain, perhaps the tumor would have been discovered back then. But no headaches pointed to no brain involvement.

There are a number of other symptoms associated with meningioma, and I checked nearly all the boxes. At one point I was unsuccessfully treated for depression. I called on one of my dear friends who is a psychologist and we had some great conversations, but none of it was leading to a cure.

I began to experience weakness in my arms and legs. Last October as temple ordinance workers we ascended the winding staircase leading up to the Solemn Assembly Room in the Salt Lake Temple for a devotional before it closed the end of December. When I reached the top step my left knee buckled completely and I nearly fell down. Fortunately, someone reached out to catch me and steady me while I regained my balance. Again, another sign, but easily dismissed as a fluke.

Then my vision in my right eye went suddenly blurry and I had some double vision similar to the condition I had experienced before my successful intraocular lens implant surgery to remove my cataracts. A visit to the ophthalmologist and then a retinal specialist yielded no answers. They simply had no explanation for the change in vision, but at the time my optic nerve was being impacted by the meningioma tumor.

Patsy started attending my appointments with me, since she was not satisfied we were making any progress. For months she suggested to the doctors that perhaps my brain was involved somehow. But they dismissed her suggestion of a possible brain tumor since, again, I never experienced any headaches. It was a true medical mystery to most who were trying to help us unravel the meaning of the symptoms, and not seeing them tied together did not point to a single source.

By March of this year I was going downhill fast. She began keeping a log of what was really going on with me. At one point I was sleeping for twenty hours a day, eating one meal a day when she could get me up, and I failed to shower for twenty-one days in a row. Those facts, once she showed me after I was recovering from surgery appalled me. I began growing a beard. something I have rarely done in my life. I just didn't care about my personal appearance. I would learn last that loss of motivation and personality were two of the first things to go when the tumor begins taking hold.

Patsy was a model of patience and consistency throughout this long odyssey. I was unable to communicate with her on even an elemental level. Finally, in an appointment in May she insisted that the doctor order an MRI on my brain. I was becoming increasingly agitated that we didn't seem to be doing anything but experimenting with possible outcomes that were ineffective. "I am tired," I explained to the doctor, "of being treated like an experimental lab rat chasing symptoms down first this rabbit hole, then another one, and hitting dead ends." He finally relented to Patsy's demands for an MRI, and wrote the order that day.

The hospital scheduled it for Friday. We had the result on Monday. Staring back at me from the screen in the doctor's office was a large round meningioma tumor in the center of my forehead about three and a half inches in diameter. Our primary care physician apologized profusely to Patsy when he showed us the imaging. He could not be faulted, however. No one but Patsy could have thought the brain was at fault. And, remember, I never had a headache, either before surgery, during surgery or in the aftermath. I thought other people had brain tumors, certainly not me.

I was scheduled with a wonderful neurosurgeon at the University of Utah Medical Center for a consultation, and simultaneously our son Andrew, who is a resident at the Mayo Clinic in Rochester, Minnesota, also scheduled a consult with one of his experienced neurological mentors so we could make an informed decision about how to proceed. Both doctors concurred with the diagnosis of the meningioma, and both recommended that surgery to remove the tumor as soon as possible was the right course of action. They even agreed on the methodology of how the operation should be conducted. It lasted for twelve and a half hours. When one of my old friends offered that it must have been a "minor" brain surgery since the tumor was benign, I said, "What I have learned about brain surgery is that there is no such thing as 'minor' brain surgery."

I was for three weeks afterwards in a "stupor," stumbling around blindly, unable to adequately express myself..My brain and my body refused to communicate. My son Rich was named as my personal representative for medical decisions in my advanced medical directive some years ago in the event of my incapacity. He was magnificent in his inspiration into my situation during those three weeks. Patsy, Andrew, Joe (a physical therapist son living in Washington state, who provided expert advice repeatedly), Rich and Dianne effectively helped to save my life, not to mention a cast of hundreds of medical personnel and those who fasted and prayed for our deliverance. Emily selected a surgery rehab wardrobe for me that drew rave reviews from the nurses and aides for the Hawaiian shirt she included. She also cut my hair pre-surgery and post-surgery. That's tricky when the incision extends over the top of your head from ear to ear, but she made me look presentable. My growing hair now covers the almost indiscernible scar. Allie brought pizza to Dianne's one night (which I didn't remember), and visited me every day through the window at the rehab center. To say that I had the support of my children, spouses, grandchildren and great-grandchildren would be an understatement. One of the "littles" prayed that Grandpa's brain would get fixed and that his scary face would be nice again. Those who weren't able to come to visit compiled a "scholarship fund" for Grandma and Grandpa to use for all the incidentals.

Andrew was present for both calls, and he was instrumental in helping us to decide what to do. The months and years of praying and fasting for a conclusive answer had finally arrived. "All these symptoms," explained the neurosurgeon at the U of U, "can be explained by the presence of this tumor in your brain. Once it is removed you will begin day by day to feel better. It will be some time as you regain your strength, but you will be cured." The day after surgery he declared that indeed I was cured ("We got it all"), and as he left my room after his rounding with me he thanked me for the cure. Strange, I thought, shouldn't I be thanking you for the cure?

I wanted to hug and shower him with kisses, but I didn't - you know, the COVID-19 pandemic had something to do with that. He scheduled surgery two weeks hence and May 21st was the first day of the rest of my life. There are a thousand more details, but I will spare you the drama.

Suffice it to say that I am thoroughly reborn. I have my motivation and my personality back. For those who always thought I was something of a numb skull that won't be such a good thing perhaps, but I am just now beginning to realize how wonderful life really is and how significant our relationships are. I have been talking to my friends and family, and have begun calling it "the 2020 apology tour," as I recount the withdrawn and dismissive old me who probably seemed aloof and disinterested. Some even said they thought I now hated them. But I have a ready explanation - it was the tumor talking (or not talking), not me.

I have brushed against the veil in this experience. I know that God loves all His children. I know that He is merciful, as we are reminded in Moroni's last chapter (see verse 3). I know that I have been rescued from this experience, not unlike those wonderful Book of Mormon characters like Alma and King Lamoni, who spent days in slumber, then arose to a new life. I have a renewed appreciation for our ancestors, particularly those in our immediate families who minister to our needs from the other side of the veil. I have experience with them and they are closer than you have any imagination. The atonement of Jesus Christ is real. He truly did descend below all things so He could raise us up from the depths of our sufferings in this life. All He asks is that we trade our sins for His deliverance.

As we were studying The Book of Mormon in our daughter Dianne's home during my rehab while I was working with the physical therapists, she handed me this quote from Steve Jobs, co-founder of Apple:

"You can't connect the dots looking forward, you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future."

Elder Neal A. Maxwell said it this way: "Faith in God requires faith in His timing."

I have a greater understanding of the great plan of happiness, even the plan of salvation since this latest episode in my life. Our deceased relatives are never really gone, they are as close as the next room and they are watching over us and protecting us when needed. I believe in guardian angels. I do know these things are true. I thank God for extending the expiration date on my mortal body a little longer through the expertise of skilled surgeons and the healing of the Great Physician. I hope my experience can be instructive to others who may be walking a similar path.

5 comments:

  1. Wonderful to have you back healthy! Miracles are well deserved for you.

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  2. Thank you for sharing. I've frequently looked here, assuming you've been busy. David, thank you. You are a hero to me.

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  3. Wow! I had almost given up on you, wondering if someone told you to stop making posts. What a journey! I'm so happy that you're recovering. Miraculous.

    And is it any surprise that Patsy is the hero?

    A lesson here for all medical folk, particularly doctors - do not disregard what your patients or their loved ones (or your nurses, doctors) are telling you. This has become as cliche for physicians as being greedy is for lawyers. Please, listen and seriously consider what they are saying. Have some humility, for Pete's sake!

    A lesson for all husbands - see above. It's just as cliche to ignore the wife. When will I ever learn?

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  4. Another observation - our perceptions of people often don't account for their inner reality. In fact, how can they, unless we happen to truly know what that inner reality is? Whether by illness, brain injury (remember Phineas Gage?), or trauma, what we see and perceive in a person might not be truly reflective of their inner character. But sometimes it is. How are we to know? And while it's generally best to avoid hasty judgments, sometimes we have to make them. Making righteous judgments is certainly one of the common everyday challenges of life. The gift of the H.G. can certainly help.

    Yours is a classic case of how a disease can change the personality of an individual, totally out of that person's control. The interaction and relationship between brain, mind and spirit - I think that's something we'll never totally understand, though progress has been made. Thankfully, or not, our righteous and all-knowing Judge will see us as we truly are.

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