Follow by Email

Tuesday, January 27, 2015

Strong

When Trevor began to lose strength in his right leg eight days ago we wanted to pretend not to notice.  After all, he had just gone hiking the past Saturday, the 17th, with our dear Josh and Sam Jackson and our Ripsi dog. They'd hiked in the snow. That's not easy. You wouldn't be able to do that if you weren't strong. So we dismissed the emerging deficits in movement. Sometimes when you have become so hyper-sensitive to any "would-be" symptoms, you can almost consciously ignore the "actually-are" symptoms that creep in, dismissing them as your ever-present paranoia, not wanting to see them for what they actually are.

When the coordination in his right leg began to decrease more, and when it became difficult to curl the fingers on his right hand around a spoon at breakfast we couldn't really ignore things anymore.

Doctors were called.
New pills were issued--bringing the fist full of drugs I deliver to his bedside every night and morning to seven little white tablets. Steroids and more anti-seizure drugs.

But each day he continued to lose strength. On Monday the 19th, my dear childhood friend, Devri, from SunRae Photography came to our home and took pictures of our family reading, playing, and trying to wrestle tired kiddos.
Though she still managed to capture mostly their cuteness and not their late-night monsterness.

  We waited for the steroids to kick in, to help inject more strength into the limbs and muscles that were becoming heavier and harder to move each day.

When he continued to lose strength and mobility throughout the week I called the doctors again.

We upped the steroid dose.

I called Trevor's mother to ask if they could bring down a recliner, because I was worried about Trevor's ability to get up and down from the couch.

On Sunday, the 25th, we traveled to Sandy to my cousin Suzy's photography studio (Simply Suzy Photography). Her studio is perched on the second floor in a business district, and although his steps were stilted, we were able to climb the stairs, get up and down on the floor with the kids during the shoot.
Trevor could painstakingly strum a few chords on his beloved guitar.
He and I slowdanced to the best of Creedance Clearwater Revival while Suzy whirled around us with her camera, capturing tiny details like our interwoven hands.
On Monday the 26th he fell down the stairs coming into our house. I try not to hover, I don't want to worry or rush him. I know it is important to him to continue to do things for himself. So I bit my lip when it took ten minutes for him to fumble his wallet into his pocket, or when lifting his arm to struggle into his coat was too much.

I called the doctors again. More steroids.

Trevor's parents went to work with him, one bracing his body on each side as he walked. There were more falls. There were lots of tears. There were more frantic phone calls to the doctors from me. There were now twelve pills in my hand at his bedside morning and night.

Monday night sweet friends from St. George came by. We laughed. We cried. Trevor's boss and the VP from his company came by. They brought love and peace about our (mostly my) worries when it comes to Trevor's work.

On Monday night he asked me to lift and manipulate his arms around me so we could just lie tangled up together as we both tried to find sanctity in sleep and each other's warmth. We cried.

Tuesday, today, Trevor was even weaker. I called the doctor and begged them to do another MRI.

Somewhere between Sunday and today I fell apart.

"He was hiking ten days ago." I cried to my mother on the phone.

Trevor and I recently made each other the promise that we would endure this trial with grace and strength. So many people send messages and notes and leave comments saying we "are so amazingly strong." But I didn't feel strong in the past 48 hours. Trevor's strength had literally seemingly left his body.

The doctors ordered another MRI today. The tumor shows additional growth in the past two weeks. And this is causing a lot of swelling in his brain. How much of his motor deficit can be blamed on swelling and how much on tumor is hard to say. The doctors say it has been amazing that Trevor has had no symptoms so far, despite the tumor growth we've experienced over the past year. They say that perhaps the symptoms are simply finally catching up. They say they can't tell us what the future of Trevor's mobility holds.

But a wise friend told me tonight that he was going to choose to believe that Trevor would be okay. That we'd hike again and that we would all be okay.

And maybe that choice is what actually makes you strong.

Maybe having the courage to walk into your office, where you manage 300+ employees while leaning on your mother and father is what makes you strong.

Maybe letting your best friends lift you back up off of the front lawn when you fall is what makes you strong.

Maybe not being afraid to cry in front of your boss is what makes you strong.

Maybe making a joke as you rub your husband's freezing and numb feet instead of completely breaking down is what makes you strong.

Maybe not holding your breath while you watch him struggle into the shower is what makes you strong.

Maybe the secrets and hopes and fears and dreams and promises we share just between the two of us when the house full of help and love and family and friends finally settles for the night are what make us strong.

Maybe the tearful prayers we offer together before we finally try to close our eyes are what makes us strong.

Maybe strong is more than being able to move freely.

Maybe strong is choosing to believe that one day we will again.  


****A HUGE thank you to Devri and Suzy for the gift of these beautiful photos--I'm so grateful you found the time over the last two weeks to squeeze these shots into your schedules. We had no idea what was coming and I am so eternally grateful to have these pictures before these latest developments.

Wednesday, January 14, 2015

A Delicate Plan

The problem with having a sobbing break down in a public restroom is that the cleaning lady will inevitably come in.

You won't notice at first because you'll be crying so hard and you expected to be alone after excusing yourself from the cafeteria table where your husband, mother-in-law and father-in-law are still sitting trying to absorb the news that chemotherapy is no longer effective in treating Trevor's spreading brain cancer. They are still there, moving their fingers in slow circles around the top of the chocolate milk (the closest thing I guess you get to a stiff drink when you are active mormons) bottles thinking about the social worker's advice to begin introducing words like "brain tumor" into your four-year-old's vocabulary, considering the PA's commentary that radiation will be grueling, and hearing the doctor's repetition of the word "unfortunately" echo through their minds.

But you just married into the Linderman family, you don't have their emotionally stalwart genetics so you escape to the bathroom where you can cry until you can pull yourself together.

But then there's the dang cleaning lady. Seriously, in a research hospital facility that must have thousands of places to be cleaned you'd pick the corner bathroom on the sixth floor at the wrong time.

So you try to collect your sobbing self, blow your nose and quietly open the stall door, hoping that she will be intently focused on scrubbing the mirrors, and not on you. But she is.

"Are you okay?"
You smile, wipe your eyes and answer, "Yes. I'm sorry. I'm fine."
Then she gives you a hug, and it's sort of awkward because she is wearing those yellow rubber gloves and some kind of work vest that has pockets full of scrubbers and rags and her perfume smells kind of like your grandma and she says, "You are here, so of course you are not okay."

And it is strange, but not having to be okay in that moment makes your shoulders stop shaking and your breath steadies. The hug between complete strangers orchestrated by circumstance and compassion begins to teeter on that line of becoming too long and she lets you go, and you smile again, thank her and walk out the door, breathing deeply all the way back to your sad cafe table and in your mind you hear the words "There is a delicate plan for you" again and again.

Those are the words that our dear friend, Bryce, spoke in August on the side of the I-15 highway as he laid his hands on Trevor's head in a priesthood blessing. We'd pulled the car over as we were driving home from a hiking bucketlist adventure because Trevor had begun to have seizures in the car...and seizures are never a good sign when you are dealing with brain cancer.

"I bless you to know, Trevor, that your Heavenly Father has a delicate plan for you."

It is interesting to trace our lives over the past two years and see that delicate plan in action.

Two years ago Trevor and I felt a strong pull from St. George to Utah County. At the time, I thought it was because I wanted to be geographically closer to my aging maternal grandparents as they aged, to be here to help and spend more time with them (although I'm pretty sure they continue to help us more than we do them). We bought a home, but didn't move in until December of 2013. Our first Christmas here was spent on air mattresses. And then January brought the news of Trevor's brain tumor recurrence. We looked that diagnosis square in the eye, lifting our chins up and saying, "We've beaten this before, we will beat it again."

Trevor was offered a position with Vivint Solar and we settled into a routine of work and kids and chemo and building our home together. This new job and the close proximity to Trevor's doctors in Salt Lake City proved to be fortuitous blessings we could not have anticipated, elegant parts of a delicate plan.

But the regular check-up scans dipped up and down. The tumor cells waned and waxed, alien moons in the black MRI films of Trevor's brain scan images.

We began to realize that this fight would not be like the fights before. The tumor continued to return more aggressively, Trevor continued to battle more and more symptoms that impacted our daily life. Trevor's little sister moved in to help. We began to talk about my returning to work, ever wary to let our health insurance and paycheck security slip away from the relentless medical bills piling in our mailbox.

I felt strongly that I should start taking more pictures, videos and gathering records of Trevor's life. My incredible friends in St. George gathered and beautifully scrapbooked two decades of Trevor's life and early childhood. He and I began to write down his life history. An angel friend sent me a hard drive to begin organizing videos that will be expertly compiled into a film for our kids.





When we were hiking in August I mentioned this working thing to Trevor's good friends. We hadn't been home more than a few weeks before Bryce emailed me and told me he'd recommended me for an interview with marketing department at his company.

I was absolutely conflicted. Trevor's scans were in an uptick. We began to believe that we really might get all three to five years (or more!) that the mortality rates for this type of tumor tout. We talked a lot, was this the right time to go back to work? In three years Liam would be in school, if we could just get that three years. And though we were making our own plans, we still both felt that I should go to an interview that had been delicately and unexpectedly dropped in my lap and see what happened.

It was the worst interview of my life. I have never felt like I botched something so badly. I didn't expect to hear anything from them. But, one of the individuals I met with emailed me a week or so later asking if I was interested in helping him out with some freelance work. I did. We developed a report. His client was happy. I was happy.

Meanwhile,  Trevor's right leg began to frequently go numb. A new symptom with ominous inklings. We waited for our scheduled MRI scan in January of 2015.

While we waited I was surprised to get an email from the fellow I'd been working with over at Bryce's company just three days before Christmas: "If you still want to work here the President of the company wants to meet with you asap." I scheduled an interview for January and tried to put it out of my mind, focusing on the other tender mercies manifesting in our lives.

Wonderful friends and neighbors brought dinners, neighbors continued to help me manage the overwhelming yard work I had counted on Trevor doing when we bought our home,  friends from St. George came to visit and help with little projects, my visiting teachers and dear friends tended kids when Trevor and I had to drive to SLC for infusion treatments. Hillary (Trevor's little sister) helped drive Trevor, tend kids and clean dishes--spending time with us each evening after her schoolwork. An anonymous angel sent us this card to help cover the costs of Christmas and medical bills. Thank you, whoever you are, for the peace you provided.

I was offered a job in the final interview. The offer letter came last Saturday morning, and detailed a nice benefits package and corporate salary.  The offer letter was set to expire today at 5:00 PM. We decided that we'd wait and see what happened at Trevor's doctor appointment yesterday.

But the news was not what we hoped. The cancer has spread, crossing the midline and taking up residence in both the right and left hemispheres. This is never good. It also tells us that chemotherapy is ineffective.

Treatment options whittle down. At this time the doctors think the best thing to try is radiation, 5 days a week for 5 or 6 weeks. Radiation is draining, one of the hardest things. When Trevor did radiation in 2007 it was the worst part of that course of treatment. And this radiation will be more intense because the field in his brain that requires being radiated is bigger then it was in 2007. There is more concern for cognitive impact. We don't know what this means in terms of Trevor continuing to work yet. And we can't know what it means in terms of benefit to health yet. The doctors tell us, on average, if a patient responds favorably radiation can stabilize a tumor for six months to a year. The best case outlier they have had is two years. If the effects of radiation become non-impactful and there are no other treatments available we begin to measure things in months.

We are not okay in so many ways. In other ways, our delicate plan continues to provide for us. Had I been offered a job in October I wouldn't have taken it. But the timing of things, be they coincidental or celestial, has offered the security to know I can provide for our little family.

It breaks my heart to leave my kids and go back to the workforce. There are too many heartbreaking things happening to them right now that they can't understand. But I am trying to trust that they too have a delicate plan in place for them.

And we will hope for the best. We will lift our chins and keep fighting for every single second we can. Because when you are living in a delicate plan every single second matters and you have to trust what comes next.