COWBOY VS CAVERNOMA

         

                 

                                                   DISASSEMBLING A BRAIN -  REARRANGING LIFE

                                                                                   October 2018

     About a year and a half ago, Doug and I decided to try and find out what was making him walk a little lopsided.  Doug began to describe his right leg as “dead” and we both concluded nerves were being compressed in his spine.  We went to an orthopedic surgeon who offered to do back surgery after looking at MRI  pictures.  Doug said, “No orthopedic surgeon will ever operate on my back.”  So off to St. Marks Hospital in Salt Lake City we went to be evaluated by a neurosurgeon, who took a look at the same MRI, saying his back looked fine; something else had to be going on.  An MRI of the brain was ordered and a “cavernoma” was discovered deep in the brain close to the left thalamus.  Well, we were instructed, cavernomas are not usually surgically removed.  Especially this one.  Best thing to do is physical therapy and not worry too much unless things change drastically. 

     What is a cavernoma? It is a grouping of slow leaking capillaries in the brain, eventually causing a hematoma-like lesion. These don't usually cause  problems unless located in a sensitive area, putting pressure on delicate nerve fibers, which had been happening to some extent in Doug's brain.

     We moved forward with physical therapy, and it helped so much that Doug seemed really strong on his right leg again.  In the middle of everything, we planned a trip to Brazil in May.  Why? Because my brothers Paulo and Howard were both serving as Mission Presidents there and I had always wished I could take Doug to Brazil to see for himself the country where I was born and the folklore of my family’s experience there.  (More later on a future blog post)

Two gringos extremely happy to be walking Copacabana by night.

Copacabana Beach, Rio de Janeiro, early morning walk

 Off to Brazil we went and as we traveled around, Doug’s walking became markedly worse.  “As soon as we get home”, I instructed, “you are getting back into therapy.”   

     Back home in June, Doug began PT at once.  After a few sessions, his therapist informed him that his leg and foot were actually digressing with each visit.  Back to Salt Lake we got for another visit with the neurologist:  “Thought I told you not to come back unless things were changing”, he condescended.  We had him watch Doug walk; he ordered an MRI.  The next visit was with the neurosurgeon at St. Marks Hospital.  He told us the cavernoma was growing, would probably continue to grow, but that he himself  did not feel qualified to remove it.  The problem:  this part of the brain is too tricky to get to.  There was only one man he would recommend for the job,  a Dr. William Cauldwell at the University of Utah, a world renowned Neurosurgeon.  And good luck getting in to see him, he’s gone a lot.  You guessed it: traveling the world  teaching.

     We made the appointment and met with his “partner”, who went through what the surgery would entail, also explaining the risks/benenfits.  Risks:  paralysis, temporary or permanent.  Benefits:  NOT becoming blind, deaf, along with the loss of all senses as the cavernoma encroached into the thalamus. Benefit #2: not allowing the cavernoma to continue to grow larger and causing most certainly a permanent state of complete paralysis on the right side.   Fine.  We signed on. Hospital stay was expected to be 3-5 days. As I watched the “Partner” walk down the hall, I thought, “Are you old enough to do brain surgery?”  Didn’t seem like it to me.  Shorter than me, 30 something with a keen eye, but….. sheeesh. Brain surgery?  

     Doug and I, in the meantime, decided to take in another trip to Yellowstone in September, since the one last year proved to be our ill-fated winter wonderland.  We trecked first to our little favorite, Cody, Wyoming, and then north to  Chief Joseph Highway and then Bear's Tooth Pass to Red Lodge Montana.

Cody, Wyoming

Beautiful Chief Joseph Highway heading north from Cody

Dead Indian Pass of Chief Joseph Highway. A sorrowful and haunting history.

Gorge  after descending Dead Indian.

Mud slide; on Chief Joseph Highway headed to Bear's Tooth.

On top of Bear's Tooth Pass.  Vast.

Glaciers in September on Bear's Tooth.  

By dawn's early light, coming from Red Lodge Montana back over Bear's Tooth Pass to arrive early in Yellowstone!

 This was  a truly spectacular scenic drive. And Yellowstone was perfect weather this time, where we arrived early one morning at the northeast entrance in time for buffalo and wolf sightings, but not early enough for the grizzlies, we were told.

The big guy.  Had to slap Doug's hand from reaching out to touch.

               Close to the "Paint Pots".  Yup the water is HOT.

 Evidence of right boot not picking up;  Looks like those paint pots.

     As the days approached for the surgery, scheduled for October 4, Doug was trying to get all his ranch work tidied up:  cows off the mountain and moved home, etc.   Coming back down the trail on his horse, Doug about fell off, as he could really not feel his right leg and foot or how to use them in the stirrup.  It seemed with each passing day his leg drug a little more; his foot not just dragging, but flopping around like a fish each time he lifted it.  I wondered how on earth we were going to make it to surgery in time and I was wishing we could have done this a month ago.

Thatcher, Idaho.  Summer range in fall color.

 My son, Jacob and sons-in-law Craig, Aaron and Alex came to the ranch and went up the canyon with Doug to cut logs, haul them home, run the log splitter, and stack it all in the wood shed.  It took an entire day of exhausting work, but it was well done and prepared us for the winter, which was a big relief. A day ahead of this, Doug and Rick, and granddaughter Brooklyn, had gone up to cut down a couple of big trees and haul them to the clearing in preparation for the rest of the work.

Better the big guys do this job than me! (I'm usually the one)

Jayni with Gwenie and Evie.  Along for the picnic.

Wesley and Austin.  Little strokes.......

What doesn't kill your back is good for the biceps.

A break in the sunshine.  Time to replenish.

Making progress.

Just getting started:  Aaron Terry, Doug, Alex Broughton, Jacob Dowse, Craig Kingsford with Wesley Broughton and Austin Dowse.  Really appreciated their terrific help and attitudes.  Nothing that a few hot baths and Deep Blue won't cure.

     A couple of weeks were spent designing and building a new ramp and loading shoot for the cattle.  This was a lot of work for Rick and Doug and a great relief to have this project accomplished.

Pretty ingenious guys.  Rick and Doug.

    The other big item to cross off the list before surgery was preparing Doug’s Estate and setting up a TRUST in the event of his death or disability.  This task had already been on our radar and we had tried to get the ball rolling with the attorney, but as events would have it, of course it was all a big rush deal now. Every last item had to be discussed in detail, reevaluated, redrawn up, and we were darting back and forth to Pocatello, EVEN (just as I had expressly articulated we not do) the day before we left for Salt Lake.  But even then, not every document was right and the attorney had to send some to us the night before the surgery.  We copied them off and, you got it, they were notarized in the hospital at 5:30 a.m. the day of the surgery.

    Doug’s friends were a source of comfort by way of comic relief before the surgery.  Joking with Gerald Alleman (also our Bishop), Doug concluded that if the docs got into his skull and decided they needed to do a brain transplant, that he would like to request  a “democrat brain”, because they were low mileage and gently used; practically new brains.  (sorry democrats, not meant to offend, it just made me laugh real hard) Also, he wanted a turbo chip inserted and a screw left in place to adjust as needed. 

     One of the sweetest sights I’ve ever seen was when some of Doug’s close friends gathered at our home to lay their hands on his head and give him a priesthood blessing the night before we left.

Eric Harris, Chad Harris, Janet Harris, Doug, Bishop Gerald Alleman, son Rick Porter, Kevin Smith, Mark Harris.

 Doug had called each one on the phone, and to one friend, (Kevin Smith) I heard him say, “Hey I was wondering if you could help me out with something.”  “I’d love to help you out,” replied Kevin.  “What can I do for you?”  “Well”, replied Doug, “I need you to go down to Salt Lake on Thursday and have brain surgery for me to see if I want to have it.”  This is how Kevin was let in on Doug’s condition, and came to help with the blessing. All his friends circled around him in our living room with a feeling of humility and love.  Doug's son, Rick, spoke the words to a beautiful blessing, promising Doug angels to protect and watch over him, and the ability to get back to work, noting that he had much more  to do on this earth. 

     Early the next morning we closed the back door to the house.  “Back in 3-5 days,” I said, looking into Doug’s face,  trying to register a commitment there for that to happen.  We had reason to doubt.

    We had wanted to meet ahead of time with the BIG guy.  You know, the neurosurgeon who would actually be doing the surgery.  This dream was too much to ask for, apparently.  We got to talk again over the phone with the “underling” as Doug affectionately named him.  Doug wasn’t happy.  “This is my BRAIN.  It’s not like getting my tonsils out.  If I don’t talk to him (the chief) before the surgery, I don’t have the surgery.”  We were assured he would get that chance just before the surgery, but Doug’s angst was visible.  The moment to have this chat approached as we sat in the large University of Utah Surgical waiting room and I looked him in the eye and said, “Keep in mind this man is going to open up your skull after you visit with him.  You don’t want to leave a bad taste in his mouth; watch what you say.”  Doug was able to simmer down and calmly ask his final questions to Dr. Cauldwell. The man was at least our age, very calm and very confident with a soft spoken, no nonsense demeanor. He told us that this surgery was “unchartered waters” because of the lesion's location in the brain, and that they would be taking photos to document everything. They would be entering and passing through the left parietal lobe to get to the cavernoma to remove it. And for our trivial information, he explained that the problematic cavernoma was likely due to the total body radiation treatments Doug had received 20 years ago for leukemia.  At the end of his comments he stated, “The purpose of this surgery is to stop the progression of nerve damage in the brain and further paralysis to the right side.  There will likely be less movement on the right side following surgery, but it should improve.”  Plain and simple.  No promises and here we go. As a side note, there were probably at least 25 people waiting to fill up the surgery rooms that morning at exactly 7:00 a.m.  We all trooped in together, our names called out and each assigned a room.  It was an amazing, mind boggling process.

I believe I know Ezekial R. Dumke III who served a mission in Sao Paulo, Brazil, and was my father's assistant in 1978.

     After two and a half hours (a lot less than they said it would be) the surgery was completed.  The “underling” trooped out to tell us that all went well and that we would find Doug in the neuro ICU. We were anxious to see for ourselves what “well” looked like in Doug’s post-op performance. (“We” included my son Jacob, and Doug’s daughter Christie who had both been with me in the waiting area.)   As Doug woke up, he spoke with slurs, and immediately realized he could not move his right arm or leg at all.  In a moment of despair he cried out to me.  I reassured him that this was expected and temporary and that all would improve.  In the next few days, Doug’s speech was noted to be measured and slower, but improving gradually.  He was not able to sit up straight by himself, nor was he able to stand without help.  His right arm and hand which had not previously manifested deficits, were now harder to move than his right leg.  It was immediately evident we would not be going home in 3-5 days. When the opportunity was presented for inpatient rehab for the next few weeks, I nodded my head.  We were going to be needing lots of help.

    Why am I saying “we?”  Must be because I knew WE were in this together and it was evidently going to be a long road.  Next week will mark the three month anniversary since the surgery.  Since then, Doug’s therapy has included: almost 4 weeks of inpatient rehab, going home with a forearm cane, and an “AFO” which helps to stabilize his right foot and leg.

Always a laugh and a half.  

Not as fun or easy at it looks.

Gotta learn to write again.

Losing at RUMMY.; winning at sheer determination. Never easy to pick up cards anyway, since Doug acquired "Stubby".

Three man spot.

 The following 6 weeks saw us motoring an hour's distance to Logan, Utah, 3x per week for outpatient neuro-rehab and pool. This has been an immense amount of work for Doug with measurably slow progress.  To work his arm, Doug will tell you it’s like lifting a 50 lb weight.  At first he just could not do it; he could see it there but it felt unrelated to his body.  Same with his leg.  His arm now seems to be responding a little better and the leg shows slower progress.  While Doug was still in the hospital,  Dr. Cauldwell stopped by to check on his movement and progress three different times.  Each time he had more hopeful comments, the last one with a smile, “He’s going to get it all back.” With the new year approaching, we are faced with insurance dilemmas and other questions, but we remain hopeful.

Branded.

    We do know this: Miracles are alive in our lives.  I can see that we are truly blessed to have the cavernoma gone.  While Doug is not able to drive a car as yet (months away probably), he is able to climb onto the tractor and operate it safely to help Rick feed cattle. We’ll take that blessing for now.  He continues to get around with his forearm cane and I am always searching for solutions to get those neurons firing better in the new pathways they are supposed to be creating; everything from physical therapy to diet and supplements.  I'll let you know if anything  helps!

Thanksgiving at Livvy's with the cooks:  Livvy, Peggy, Katherine, Jayni, little Evie, Sofia, Megan.  Missing Sally in Texas!

Someone's cup and arms are running over.  Gwenie, Rosie, Caleb.

Truly a day of THANKSGIVING!  So many blessings to recognize this day.

When discouragement begins creeping in, I rely on remembrances of  times our Father in Heaven has come through to help us in whatever way we have required, in whatever circumstance or struggles we have found ourselves enduring.  Our faith has increased in times past, and I expect it will do the same this time as we trust on.

     "I do know that whosoever shall put their trust in God shall be supported in their trials, and their troubles, and their afflictions, and shall be lifted up at the last day."     Alma 36: 3 (Book of Mormon)

Keep on Keeping On. ( High Uintah Mountains, August 2018)

Huckleberries, a lot of work for a little yield. Worth it.  ( August 2018, in our East Mountains)

Happy New Year!!!

Filly, " Charlie Rose"  with mama "Bonnie", born April 2018.  God's creatures make this world a wonder.

Signing off, with love from Porter Ranch