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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.


Cynthia said...

I love you both and your sweet children. You and Trevor have blessed me in ways I don't even know how to express. You are wonderful examples me. The trials we face in this life are difficult to find reason in, but they help us grow so that we may teach our children the things that will help them navigate their trials and this world. It took me years to understand that. Chels, I know I've been absent add I struggled through my trials these last few years, but I'm here and I'm willing to make the drive to be with you and offer what I can. My love and prayers are with you.

MyDonkeySix said...

Thank you for sharing it all with us. So beautifully written. We love you and pray for you to have the strength to endure all that this brings.

Elaine Wilson said...

Chelsi, I love you and you inspire me. What a beautiful, delicate show of love and compassion you, Trev, and your family have. Please know that you are in my thoughts and prayers. Hugs, friend.

Scott and Mandy said...

We care for your family so much. This is heavy, even to read. I can't even fathom experiencing it in person. Please know that we are praying constantly for Trevor and for your whole family. Your bravery and grace are astounding Chelsi. Luvs.

Elizabeth and Brent said...

I love you Chelsi and you are amazing! You and your precious family our in our prayers and in our thoughts. I wish we could see the big picture instead of a glimpse if we're lucky. Trials aren't fun and we often ask ourselves what do I need to learn from this? Know matter what happens the gospel is true and we will see our loved ones that have gone on. Like we will see our precious baby Jordan again who is with heavenly father.

Celese said...

Oh, Chelsi! What a sweet post. It really touches my heart. I know that I don't ever leave comments, but I often read what you write. You two are an incredible couple. I'm grateful you all will be together forever, but I know that doesn't heal the hurt that you have. I will always keep you four in my prayers. You are amazing. I wish I could do more for you all.

Babybizliz said...

And...your amazing post is part of the plan. Your family is eternal, And so is the wisdom you have gained. Thank you for blessing my life with your testimony. I can testify that the Lord will not leave you comfortless through all of this.

Di said...

I've read this several times since you've posted it, and I just don't have adequate words. I just think of all the treatments and hope and love and fighting Trevor and your family have done in the last 15 years and think, "Well, shit." It's clear by the massive outpouring of love I've seen that I'm not the only one who loves you both and has been influenced by Trev's humor, (sometimes) patience, hard work and kindness. It seems incomprehensible and impossibly unfair that someone as amazing as he is must face this, but I'm glad he has you, the kids and such a loving family to do it with. Much love coming from Salt Lake, and if there's ever something I can do to help, please don't hesitate to ask.

Beth Willmore said...

I'm so sorry that you didn't receive better news. You and Trevor are the most amazing couple I know, and your strength and grace astound me. Please let all of who love you know what we can do to help - besides praying for your little family every night. :)

markandjenny said...

I just wanted you to know I am praying and thinking of your family. My dad sent me this last blog post tonight. I had no idea the struggles your family has been battling through, even the reoccurrence back in 2007. I am so sorry to have been so out of touch. Your family is beautiful and strong. Your words are touching and my heart is heavy. Thinking of you guys.

Jenny Hobbs Steiner