Chapter 5:

Better Days, Conquering Moab

June 2016 to June 2017 was no cake walk, but it was full of many good things, great things, and Julie fought the bravest fight during this time.

The femur hip surgery in June 2016 was the hardest yet.  So painful, and she lost it mentally in the hospital, wild hallucinations and bizarre conversations.  I was worried, but once off the ketamine and benzo’s she was back to normal mentally.  It took her weeks to walk again without help.  

At the end of summer, Julie felt well enough to make a California trip to see Kendall who was on an internship there.  She enjoyed going to the beach, and to Disneyland in a wheelchair.  

Jonny got engaged, and in September I arranged for high quality family photos and engagement photos.  Julie looked ravishing and healthy in those photo’s.  We made trips to Provo to visit our older children.  IV chemo started about this time again.  In November we made a long road trip to Mesa for Jonny and Emily’s wedding, a very happy time.  We were late for about everything.

In March we went on a family trip to Moab that turned into a little triumph for Julie over her cancer. I will insert my account of that here:

By March 2017, Julie had suffered from extensive metastases and was nearing the end of any effective chemotherapy treatments.  By then each step was painful due to metastatic tumors throughout her skeleton: skull, vertebrae, ribs, pelvis, hips and femurs.

We had traveled to Moab to spend some spring break time with the kids, and for the Canyonlands Half-Marathon.  We arrived the day before the run, and had a little time to explore, before meeting Jonathan and Emily.  We drove to the Negro Bill Trail and started to walk up it a little, Julie and I and our four youngest children.  I just thought we would walk a few hundred feet or so, but Julie wanted to keep going.  It had rained earlier in the day, so the creek had cut into the trail in places, making it muddy and in spots impassible without stepping on rocks, over branches, or walking sideways with back to the sandstone cliff while navigating the narrow patch of mud and sand of the remaining trail.  

I kept suggesting that we turn back, that the creek was too high, and that I was afraid we, or Julie might slip and get hurt, but Julie wanted to keep going.  She was both in pain and excited, both sad and frustrated with her disability, but determined to go on, like she had something very important to prove to herself.  She wanted very badly to get to the end of the trail and she was gritting her teeth and moving forward.  

Probably about 3/4 mile into the hike, we came to a place where the trail crossed the stream.  To get across would require deep wading or rock hoping on wet and possible slippery rocks.  Julie’s gait at this time in her life was not only painful, but weak and unsteady.  She was using walking poles and I was helping to steady her, but at this spot on the trail the risk was too great of her falling and breaking a leg where tumors had weakened bone.  I protested against going any further and she relented.  She was defeated here, and I could feel the disappointment in her as she retreated down the trail.  Still, as we returned she was happy again and cheerful as she watched Christopher and Noah scamper and explore along the trail ahead.  

The following day the four of us, me, Jonny, Heidi and Nate, got up early and ran the half-marathon.  Julie, Emily, Christopher and Noah were there to cheer us at the finish line.  Julie was thrilled to see us accomplish our goal.  After the run, we met up with Jordan who had flown out from Missouri to SLC, then drove down to spend spring break with us.  We had planned on hiking to delicate arch that afternoon, a hike that Julie has done many times.  It is a 3 mile round trip hike on sandstone, with a modest elevation gain, and a stretch of steeper assent over a wide sandstone slab and then a short exposed walk along a ledge before you reach the top.  After the defeat of the prior day, Julie and I did not intend to do the hike with everyone else.  I should say that I did not intend to do the hike, and Julie was going along with my plan, but to this day I don’t really know what her preconceived intentions were.  

We arrived at the trailhead parking lot and the kids all started out on the trail.  Julie with her hiking poles started down the trail with me along for company.  We told the kids to go ahead, and that we would stay back and wait for them here.  Julie and I walked for a few hundred yards before I asked if she wanted to stop yet.  I could visible see that she was hurting, but she wanted to go on a little further. Several times I would asked her if she wanted to stop and go back, before I finally realized and fully accepted that notion that she intended to do the whole hike.  She was obviously in pain, and I was full of both pride for her determination, and pity for her suffering.  

When we reached the start of the assent up the broad sandstone slab, her pain seemed to be improving, and it was clear to both of us that we were going all the way.  She said firmly, “I have got to reach the top.”  

It was slow moving up that slab, but at the crest she was clearly excited and smiling big, with less than a half mile of relatively easy ground ahead.   At the final assent up the exposed ledge, with about 100 yards to go, we met the kids coming back down.  They we so happy to see their mom coming up the trail.  They gathered around her with smiles and encouragement.  “Hey Mom, way to go…we’ll all go with you back to the top!”  We soon rounded the last sandstone wall and viewed Utah’s most iconic geographical feature, Delicate Arch.  Julie was tired, content, happy, and at peace as we took photos and rejoiced.  

A few weeks later we were visiting her oncologist, Dr. Garrido at the Huntsman Cancer Institute.  He asked how she was, what she had been able to do.  We told of our family trip to Moab and her hike to Delicate Arch.  Knowing the disabling effect of her extensive metastatic cancer, he looked incredulously at her.  With dumfounded expression he shook his head and said, “You hiked the whole way?  I can’t believe it Julie!”  

It was a triumph.  Julie had conquered Delicate Arch, she had conquered pain, she had conquered expectations, and that day she conquered cancer.  

As Winter 2017 progressed, Julie was in greater and greater pain, throughout most of her body.  Doses of oral opioids and opioid patches were increased.  IV chemo was stopped due to her developing painful neuropathy and tumor progression despite the chemo.  

We had discussed PRRT therapy with her cancer doctor at Hunstman in the fall of 2016, and he advised against it, and said Julie was not a candidate for it.   In retrospect we should have gone and done PRRT three years earlier.  If we had, while not cured, she may still be yet alive and well.  It was not the standard treatment yet in the US, and we were not given this option by her oncologist.  

I still am struggling with this knowledge and wish we had sought out a different oncologist out of the region, and been more inquisitive about this new therapy.  We were blind and content to trust our current oncologist at Hunstman Cancer Institute.  Our Idaho Falls oncologist was going to help us arranged for PRRT treatments, but was not familiar with the process either.  By June 2017 we knew there was no other option and we decided to do whatever was necessary to get the PRRT, but there was a setback.  

Off all chemo there was nothing to stop the tumor progression, and by June the pain was unrelenting and terrifying for Julie who was in deep despair.  The pain specialists placed an intrathecal pain pump that would give her constant infusions of a very powerful opioid into her spine to block the pain at that level.  She underwent general anesthesia and an overnight hospital stay for the procedure and was then back at home with more relief.

She was only at home for about a week, when I discovered her breathing to be shallow and slightly labored one night.  I took her O2 sats and discovered that they were much to low.  We went to the ER and she was found to have pneumonia.  She was admitted to the hospital and was there for 10 days.  

While admitted it was discovered that she had a lung tumor that was creating the obstructive pneumonia.  She then lost her ability to speak, eat and swallow due to a tumor in the base of her skull compressing a nerve that controls those functions.  Radiation is a miraculous treatment that saved her life at that time, shrinking those tumors enough for her to heal and leave the hospital again, though for a while we and her local oncologist thought this might be the end.  

The ER physician we saw the night she was admitted compassionately asked Julie to consider hospice care.  Months earlier, Julie had had a sober conversation with an amazingly compassionate palliative care physician at Hunstman Cancer Institute.  I don’t recall her careful and skilled words, but she was the first person to reach Julie in a way to positively get her to consider embracing quality of life over further treatments.  Julie found the conversation extremely comforting, even though it hadn’t changed her mind.  She was going to keep doing everything she could to live as long as possible. 

During the 10 day hospital stay in late June to early July 2017, I had time to write some, compile some, and start my official blog site, “To Run and Play”.  What follows are the posts that I made during that stay.