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Wednesday, June 25, 2014

Hope

The opening lines to one of my favorite Emily Dickinson poems roll so easily off of the tongue...

“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -"

I don't know that I would always describe myself as an overtly hopeful person. 

I'd like to think that I am hopeful. And in the easy situations I am. I hope my kids will be healthy and happy, and they probably will be. I hope the garden will grow, and so far the tomatoes don't look too terrible. I hope that I can find a pair of colored jeans that will look somewhat decent on my booty, and there are a lot of great jeans out there and my booty still isn't half bad, so the odds are in my favor. 

It's the big things where hope can be a little harder for me to find. I hope they like me. I hope they accept me. I hope we can be friends. I hope I can do X, Y, Z.

I hope Trevor and I live to be old and gray together. I hope my kids have their father in their life in this world at least until they reach adulthood. I hope his disease has minimal impact on our lives. I hope that I can move through each day without thinking the words, "I'm going to lose him" a thousand times on repeat.

I struggle with hope in those big departments because I struggle with trust. And the thought of losing Trevor in some untimely tragic way often becomes devastating to me because he is one of my very close, intimate relationships that is marked by absolute, pure trust. 

It's always been easier for me to run away from a situation or withdraw from a relationship where I perceive that I might be hurt before any actual hurting can occur. Silly as it sounds, there is something in my make-up that would very much make sure I can hurt myself by pulling away before someone else can hurt me. Once my trust in something or someone feels violated, it is hard for me to ever step back into what I now see as a line of fire. 

It's a flaw, and I'm working on it, but I will work on it for the duration of my lifetime because hope is a big one, and it's especially big for me. President Dieter F. Uchdorft shared these beautiful words in 2008:
Hope is one leg of a three-legged stool, together with faith and charity. These three stabilize our lives regardless of the rough or uneven surfaces we might encounter at the time. The scriptures are clear and certain about the importance of hope. The Apostle Paul taught that the scriptures were written to the end that we “might have hope.” 1
Hope has the power to fill our lives with happiness. 2 Its absence—when this desire of our heart is delayed—can make “the heart sick.” 3
Hope is a gift of the Spirit. 4 It is a hope that through the Atonement ofJesus Christ and the power of His Resurrection, we shall be raised unto life eternal and this because of our faith in the Savior. 5 This kind of hope is both a principle of promise as well as a commandment, 6 and, as with all commandments, we have the responsibility to make it an active part of our lives and overcome the temptation to lose hope. Hope in our Heavenly Father’s merciful plan of happiness leads to peace, 7 mercy, 8 rejoicing, 9and gladness. 10 The hope of salvation is like a protective helmet; 11 it is the foundation of our faith 12 and an anchor to our souls. 13
Moroni in his solitude—even after having witnessed the complete destruction of his people—believed in hope. In the twilight of the Nephite nation, Moroni wrote that without hope we cannot receive an inheritance in the kingdom of God. 14
His entire address is fabulous, and you can read it in full here.  

One of the hardest things for me regarding Trevor's health situation is trying to constantly walk in hope. And I will admit that at Trevor's appointment a few months ago when we were told not to expect any positive change in Trevor's scans and the state of the tumor growth, that our new goal was to simply keep it where it was at, that my default setting was to make myself accept the disease's progression, reconcile that progression means moving more closely towards a finale, and to start moving pieces in my life around accordingly. I have been very busy the past three months making my peace with these perceptions.

For me, that peace comes in big and little things and sometimes the striving towards it becomes burdensome in and of itself--there is a beautiful article written by a woman with a husband in much more physically challenging stages of a brain tumor than where Trevor and I are at--she describes living with that constant voice in your head reminding you that your husband is sick like this: 
I watch, powerless, loving him, longing for a miracle, praying for healing, hoping with all my heart that he will walk normally again, or maybe regain use of his right hand. Or be told that he has won the battle. And a battle it is. Personality traits seem exaggerated. He, more casual. I, more obsessive. I gasp with his minor missteps, terrified he’ll fall. And he falls plenty, no matter how careful he is or how often I gasp. I cry so often and unexpectedly that I’ve stopped wearing mascara. With love also comes arguing. Most couples disagree or get grouchy with each other. Sure, he has cancer, but does he have to rule the channel changer? It’s hard to be angry with someone who has a brain tumor. We are constantly reworking the nuances of our relationship. He frequently needs help, but doesn’t want it. I get that. But it’s frustrating to watch him struggle with zipping his coat, knowing he’ll ask for help anyway. Or to stand in the freezing cold as he slowly maneuvers into and out of the car. I feel so deeply sorry for him, and at the same time internal conflicts abound as I recall past times when he drove and I could relax or read the paper and sip coffee. Selfish thoughts, perhaps. It’s hard to be selfless and loving 24/7. Guilt has become my default setting. 
 But, as we learned at our appointments yesterday, sometimes tumors change their minds (will I ever be able to remember this?). After telling us to expect no positive change, yesterday Trevor's tumor team told us that they thought his scans actually look better.

To try and best simplify the technicalities--it can be clearly seen in the MRI slices that the "flares" (areas of the brain taking up MRI dye) which indicate cancer growth were actually smaller than they were three months ago. Which potentially indicates that the chemotherapy is working very well.

Trevor's doctors are pretty conservative, and I don't think they would dole out false hope flippantly. 

Still. It is hard for me to trust. To hope that the cancer pockets really did shrink. To hope that it is really working. To hope that Trevor might just beat this thing back again after all.  

I’m still all over the place. Filled with love for him. Annoyed as hell with him. Trying to live in uncertainty. Grateful. Scared. I don’t want to lose him.

The mixed emotions that come with cancer pile up. But so do the blessings, something I never understood about cancer. People who have been merely acquaintances now sincerely whisper, “How is he?” Friends drop off food. A neighbor mows and edges our lawn every week and refuses payment (and we have a lot of lawn).  Family and even Facebook friends offer love and prayers and fastings. My mother spends hours on the phone with me, weathering my emotional roller coaster states. The teenager up the street sits with the kids and I during sacrament meeting when Trevor is feeling too sick to come. We get cards in the mail from folks we haven't seen since college. Co-workers, past and present, send care packages. The neighbor across the street brings Trevor a pair of leather chaps for his bike. Another neighbor runs over eggs to a sister in law who comes to tend kids and makes cookies only to discover I am out of nearly every staple that should be in a pantry or fridge. Friends come from St. George to visit and help me run a household I am virtually now running by myself because most of Trevor's energy is spent working in the day.  A phenomenal photographer we don't even know offers to take our family pictures at no charge. I am only scratching the surface--there have been more acts--big and little, too many to name.

Just when I think I will crumble, these human angels--you human angels--pick me up. And I know you lift Trevor as well.

The essence of cancer simply is that it is inherently unpredictable.

In January when Trevor's tumor started to grow again there was new grief, new disbelief, new decisions, after we had been lulled into thinking he had won this battle seven years ago. 

Then yesterday we learned things might be better than we all thought.  Now all those who love him will stand by him again. I will do my best push away fear and anxiety, and hope--ever so cautiously--once again, for a miracle.

Until then? We’ll hug, laugh, cry, and maybe argue about the way he leaves his jeans on the closet floor....and we will keep checking off that bucket list....which is why we are getting on a plane one week from today. :)  

Friday, June 13, 2014

Knocking Off the Bucket List

Our everyday wonderfuls continue to be wonderful.

Some of the highlights include stealing Daddy's car from work to wash and detail it as a surprise. Leaving love letters under Daddy and Ivie's pillows. A night out to the theater with Grandma and Grandpa Great and Nana. A night at the movies with Toothless the Dragon, Uncle Jade, Aunt Hillary and Ivie's new little friend, Millie. A crazy quilt shop hop adventure that took us all over the valley. A smashing party for our little man who turned one! (This event gets it's own post tomorrow or so). Cooking one of Dad's favorite dinners and lots of snuggles, hugs and soft conversations.

And then, tonight, this:
He does look handsome on a bike 
When Trev first sat down and began to write out his bucket list he only penned three items before emotions ran high and "things got too real" and he needed a break. We've added to the list since then, But in that initial top three was "ride a motorcycle for awhile."

I am not a huge fan of motorcycles. They scare me. The wrecks they are in scare me. Trev has mentioned wanting one off and on through the years, and always we have both come to the same conclusion--it's not a risk worth taking.

But, when you have a stinking group of cells in your head that are intent on killing you, it seems like maybe life is worth taking a few more risks.
I told Trevor if he really wanted one then now was the time to get one while he was still healthy enough to enjoy it because we don't really know how long we have, or when his disease will continue to progress.

So, he came home with this baby tonight.
If I'm being honest, the thought of him riding a motorcycle still stirs up fear in my gut. I've snapped pictures, cheered and even sat on the thing myself tonight--all the while pushing aside the anxiety I have about the safety, the price tag, the million things that could go wrong in a second.

There will be a time and place for those worries. But tonight, we are just knocking this one off the bucket list and deciding to take the risks that promise to reveal some more really wonderful parts of this life.
The kids wanted to sit on the bike too

Maybe this little bean has a future in Biker Babe modeling.

We have another bucket list adventure in the works that I am DYING to tell you all about....but I'm holding onto the secret just a little bit longer - so keep checking back :)

Tuesday, June 3, 2014

Everyday Kind of Wonderful

We've all heard the cliche a million times.

It landed Tim McGraw a #1 slot on the Country Top BillBoard charts for seven weeks straight in 2004 with the song, "Live Like You Were Dying."

It won Morgan Freeman and Jack Nicholson acclaimed fame for their roles in The Bucketlist in 2007.

It's captured in Mel Gibson's poignant words in the epic Braveheart as: "Every man dies, not every man really lives."

It's printed as "Carpe Diem" across a thousand bumper stickers and t-shirts.

And in the most poetic of words, some I've been thinking about a great deal lately, writer Stephen Vincent Benet describes it like this: "Life is lost not by dying. Life is lost minute by minute, day by dragging day in all the thousand small, uncaring ways."

But I will be the first to admit that despite its prevalence, it is a sentiment I have rarely taken to heart. Even through Trevor's first two battles with his brain tumor I just saw those episodes as bumps in the road to the two of us growing old and feeble and gray together...

and while we still desperately hope and pray that we do, we also know that we might not.

Really, nobody has any guarantees. None of us know when our own expiration dates will suddenly roll around. We take for granted that another breath will follow our last, that our to-do lists can wait til tomorrow, that there is always going to be more time.

But the recent turn in our lives has given us pause to think. Over the weekend while the baby slept and Ivie visited cousins and grandparents in Idaho, Trevor and I watched a show that centered around the friendship of two individuals. One had recently found out that he suffers from an inoperable tumor and has five months to live. He opts not to do any treatments, much to the dismay of his friend, and instead wants to spend his time doing the things he has always wanted to do, rather than being sick from chemo and radiation. The friend eventually accepts his wishes and the two take off on a motorcycle trip across South America. The subject matter hit a little close to home, and we began to talk about what we wanted out of however many days, years or (God willing) decades we may have together.

Trevor said, "I think what I want to do with my time is mostly just this, be normal. Go to work. Come home  and do it all again as long as I can."

"Are you sure?" I pressed, "Wouldn't you like to do something magical or wonderful? Take some kind of trip or skydive or something crazy?"

"I think our life is pretty wonderful." came his quiet response.

I've been thinking about his words. Sometimes I get so busy looking at the dust on the windowsills, the boxes still yet to be unpacked, the piles in the garage, the dry spots in the lawn, the weeds in the flower beds, the unsorted emails, the pile of single socks that have lost their mates in the laundry that I don't see the magical and the wonderful.

But I want to see it. I want to live my life a little more thoughtfully, and make things a little more wonderful everyday for my family.

To that end, I decided that everyday I would find or create some sort of fun, magical, wonderful, surprising, silly, spiritual or sentimental simple moment for our family.

We started today.
Ivie painted the sign we hung on the front door to greet Trevor when he came home from work.
 There was a Nerf gun lying beneath it. 
This is hardly an original idea, it has been floating around Pinterest in various pins for awhile now. In fact, I pinned it months ago. I'm not even sure where the original idea came from, so I can't give someone else their due credit. It's been one of those things I was going to get around to doing when the house was finally all organized, when the laundry was done, when the windows were washed...when...when...when...

It was something we did today.
This is Ivie's "war face"

Double Guns


It was fun.
It was silly.
It was wild.
It was wonderful.

He's cute, but he makes for lousy backup...
Here is to finding the everyday wonderful in all the rest of they days we have. Here is to living like we are dying. Here is to speaking more softly, forgiving more quickly,  laughing more deeply and loving like there really might be no tomorrow.

And here is to checking off some of the bigger items on Trev's "bucket list" mixed in with our everyday wonderfulness. He took his motorcycle permit test at the DMV this morning. I'm thinking that no matter how things turn out there is some leather and chrome and exhaust in the near future....stay tuned :)


Sunday, June 1, 2014

Our New Normal

I know it has been a very long time since my last post. I appreciate the patience of those who have been wondering what the latest with Trevor is, and the understanding for missed phone calls and unreturned emails or Facebook messages.

A great deal has happened since my last post, and all of it is life changing--some for the better, some for the worse. When you live with a chronic and life altering disease like cancer there are often times where words are inadequate to express all that happens, the emotions and thoughts that roller coaster from highs and lows.

As I write this post it is National Cancer Survivors Day (at least according to FB, so that makes it true, right? :) ). And in many ways this is a post about survival. It is a post about recognizing that life is a series of naturally occurring and spontaneous changes. It is a post about letting reality be reality, and about letting life flow forward in whatever way it likes as we embrace every moment.

So.....

Let's begin with Trevor's health. In April we met with Trevor's oncology team at The Huntsman. Trevor's folks, his little brother and one of his little sisters were in tow and, as always, the amazing family support we feel everyday was an indescribable blessing. At this appointment Trevor had an MRI scan and we were able to speak further with the doctors to gain a more clear understanding of where things are at. It was a conversation that granted more insight and knowledge about what to expect as we move through this experience, and we have all been processing the information in our own way over the past month.

The good news is that Trevor's scan showed no additional growth in the cancer cells in the left hemisphere of his brain. What this indicates so far is that the tumor cells seem to be positively responding to the chemotherapy treatments.

The bad news is that right now this is the best we can hope for. Every other time we have walked down this road there has been a way to eliminate, even if just temporarily, the tumor cells. It has been a matter of cutting them out and then moving forward. But that is not an option anymore, and all of the implications of what this means can be heavy. We used to go to Trevor's check-ups every six months and hope to see a clear scan--and it is taking some time to accept that our new normal is to now just look for no additional growth. Our old baseline of "no cancer activity" has shifted to "no additional cancer activity." This is the next step in the evolution of this disease, and our new goal is to keep the cancer from spreading as long as possible. How long that may be is hard to say. Right now, the best thing we know to do is continue chemotherapy treatments, with gradually increasing dosage amounts, each month for up to two years as long as Trevor's body can handle it. What we hope this accomplishes is that the toxicity of the chemo keeps the cancer in check for as long as possible. And in the meantime, like millions of others impacted by these kinds of health conditions, we continue to watch and hope for scientific advancements that can offer additional possible treatments. And, of course, we hope that Trevor's remission years are long and plentiful.

But, it isn't going away. It brings us one step closer to the way cancer can conclude, and we are also trying to be aware of that reality.

There are moments when the fear of that reality are too much for me and I call my mother crying or go to the store because I am not a public cry-er, and putting myself in the middle of a bunch of people is always a sure way for me to pull it together.

Trevor and I are talking more about the various ways his health might split and how to best prepare ourselves and our family for those possibilities. We are writing and checking off bucket lists, making financial preparations and trying to find that fine line of living in the moment while still behaving responsibly for the future.

Trevor continues to feel healthy, and still hasn't shown any physical symptoms of the tumor's progression--all of which are really good signs.  At this time, he wants to continue to work, establish our home in Pleasant Grove and just live like there is nothing growing in his head. The same characteristics that drive those goals are some of the things that most draw my impulsive nature to Trevor's steadfastness. He has always been my anchor, my sense of security. After our last meeting with the doctors I was ready to sell our house, cash out our stock portfolios and drive an RV around the country  seeing and doing as much as possible while living on bread and peanut butter and counting on the kids to figure out how to pay for their own college funds.
Liam loves watching Hershel (the hamster) run in his wheels

Working brings to mention another shift in our lives, another part of our new normal. For the past five years Trevor worked for Overactdev Technology Partners. An incredible company that has been like family to us. It's an organization run by excellent people and the knowledge and experience and friendships Trevor gained there are priceless. Several months ago an opportunity fell into our laps and it was something Trevor wanted to chase and follow. He is now working for Vivint Solar as a manager in their CAD Design department. The new career adventure has been exciting and demanding. Trevor enjoys the people he works with and the challenges of improving operations and process at a company that is experiencing phenomenal growth.

Of course, the other way this change impacts our new normal is that we will now be living more full time in Pleasant Grove. This is one of the changes I have the most mixed feelings about. I strongly feel this is the best place for my family to be right now, and the proximity to Trevor's doctors is a huge advantage. But, I miss St. George and the incredible friends we have there. We plan to be back in St. George at least monthly, and know that it will always be among the places we feel most at home. Even from up here though, we continue to feel the sustaining support of those St. George friendships.

And we continue to make friends and acquaintances here.  Our neighbors are lovely and our LDS ward is welcoming. There are so many things to do with kids up here, and I've been enjoying the museums and community events with the kids. We are also discovering hiking paths and parks. Ivie is planning to start preschool in the fall and is currently enjoying gymnastics. She is also beginning violin lessons, and is so excited to be able to play along with her dad on his cello. Trev is planning to attend her weekly lessons with her, and I'm excited for the two of them to have that time together.

Ivie on the balance beam at gymnastics
Liam is growing and growing. I cannot believe that in just one week he will be a year old! Sometimes I feel like in the craziness of the past year that I have missed too much of his growing up, that I haven't paid enough attention to the sweet baby bits of him that are all too quickly turning into toddler. He is a lovely soul. He is incredibly happy and easy going--more so than even Ivie was as a baby. He is content and quick to smile and has an absolutely infectious laugh. He is his sister's shadow, his mama's boy and his daddy's teasing accomplice. We love him.

Little Big Guy
Ivie at her preschool graduation in St. George. 
I am having fun--mostly, anyway--putting our new place together. Trevor has never been particularly handy, and knowing that there will likely be time when he will no longer be able to fix things around the house, I've been on a crash course in power tools and projects. I think it makes me feel more in control of things to feel more self-sufficient, and Trev is patient with all my tinkering as of late. I am also looking forward to a great girls getaway to West Yellowstone in a few weeks with some of my best friends. I am planning to run a half marathon there, but am very nervous about a knee injury I've been battling. My friends may have to drag my body across the finish line.

Our hearts are full and our feelings--while often tender--are sincere and open, and I am continually grateful that we share the kind of closeness that enables us to discuss the parts of this journey that are scary, funny, painful and fulfilling.

Trevor's next scan will be on June 22nd, and we hope we continue to see the same kind of positive chemotherapy reactions we have experienced thus far.

Meanwhile, I have been more consciously aware of our time together, and have been thinking of ways to make it as wonderful as it can be, some of the details of which I'll share here soon. Until then, thank you for reading and praying and hoping and being with us. We love you all.