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Wednesday, October 22, 2014

A Roller Coaster

We've all heard the worn-out phrase, "Life is a roller coaster." It's an analogy well used, and there has been no other time in my life, perhaps, that I have heard the phrase as much as I have lately. The social worker at the hospital describes the cancer journey in terms of the roller coaster comparison, other cancer spouses I talk with shake their heads and say, "it's just such an emotional roller coaster," the words have rolled off of my tongue as I sometimes struggle to explain the current status of Trevor's tumor over the past four months to others, "it's a roller coaster."

I know there has been a big gap in blog posts following my last update. It's been one of those "down times" and I've been holding on too tightly to the ride to release my white-knuckle grip and find the words to explain the continuum of change the past months have brought.

If you remember the previous post ended with a bucket list teaser about getting on a plane...which we did in order to fly to

New York!
My amazing mother, stepdad and grandparents saw the "Visit the Statue of Liberty" item on Trevor's bucket list and turned his dream into reality by making arrangements to see Lady Liberty on the 4th of July and watch the incredible NY firework show from a boat in the New York harbor that night. It is a trip that deserves a more extensive post, and will always be a very special time and memory for us.

After coming home we spent some time at the beach in California with the Linderman family, soaking up more fun and sun and time together.

Our next big bucket list trip came at the first of August--climbing the Grand Teton in Teton National Park. I was lucky enough to tag along with Trevor and his childhood buddies--who put this trip together for him.

It was on our way home from climbing The Grand that things started to get a bit concerning. As we were driving back from Idaho late on a Sunday night Trevor suddenly stopped the car, pulling to the side of the freeway and said, "Something isn't right." He began to have seizures. Our dear friends, Josh and Bryce had ridden up to the adventure with us, and, by some tender mercy, were in the car. Josh was able to help with Ivie, and Bryce got out of the car with Trevor. These seizures were strange, not the sort we have experienced in the past. Trevor never lost consciousness--but could not control the muscles on the right side of his body. We debated what to do, Josh called all of the hospitals along our route on I-15 and visited with the folks in their ERs. After learning that most hospitals up until SLC didn't have on-call neurologists working at night we decided to simply head home. The seizures continued until the next morning. We called Trev's doctors at the Huntsman and they moved his MRI up and prescribed an anti-seizure med to begin taking immediately.

Meanwhile, Trevor continued to click off bucketlist items, hiking King's Peak--the highest peak in Utah, with our buddy Josh.

There were more seizures.
Please note - this is NOT a copy of Trev's MRI,
 just a google image I snatched of a brain tumor in the motor cortex of the brain. 
The next MRI revealed what we had feared--the cancer had spread to a new area in Trevor's brain, the motor cortex. While the new tumor was more condensed then the previous cancer spots we had been watching, it was nestled in an area that had a high risk of paralysis if removed surgically.
This meant a few different things for us.

  1. The tumor was no longer responding to the chemotherapy we had been using since January
  2. The cancer is aggressive to have such major growth in only two months. 
  3. As long as the tumor is present in the motor cortex of Trevor's brain it may continue to cause seizures.We continue to deal with the recurring seizures, and the impact they have in our daily life and Trevor's work.
  4. Trevor cannot drive until he has been seizure free for 90 days. 

We visited with our oncology team and the brain surgeon. We decided that we would not try surgery yet, but instead try a new kind of chemotherapy and begin infusion therapy treatments as well. Trevor's little sister, Hillary, moved in with us and has been indispensable help in driving Trevor to and from work and often taking him to SLC on Fridays to do the infusion therapy treatments.  We started  the new chemo right away....and we planned another bucketlist trip.

This time we spent ten beautiful days in Washington DC with Trevor's parents. Another very special trip we will always remember.

After coming home we spent a weekend deer hunting and camping. And then this week we visited the doctor again.

And suddenly our roller coaster seems to be cruising upwards. Trevor's scans look great. Even with the caveat that one of the drugs Trevor is currently taking can make scans look deceptively good, they still look great. The tumor in the motor cortex seems to have shrunk significantly--which may be why we haven't had any seizures in the past two weeks, whereas we were having one to two seizure episodes per week prior to that. We again find ourselves feeling hopeful, and my freak-out meter dials down a little from where it was at in September.

We are relieved. We are grateful. We are mindful that it can all change again. And we are continuing to learn to soak up every second of life we are allotted.

Because that is the thing about the roller coaster analogy that never quite adds up. The comparison is supposed to signify that ups and downs of life, implying that the downs are the rough patches we all find ourselves in.

But the downs are where you really feel alive--the wind rushing around you, the sound of the railed track furiously clicking beneath your car, the feeling of your stomach floating upward in your chest, the thrill and reassurance of squeezing the hand of the person next to you or simply letting the air fly through your fanned out fingers as you raise your hands high above your head. In the downward rush of the ride you are fully present, acutely aware of every sensation, every gasp of air that hurtles into your lungs or exits your body in a delighted scream. It is thrilling, terrifying, exhilarating, joyful and frightening all at once.  It is life in the moment.

We continue to learn to live in our moment.

And right now that moment is beautiful.


MyDonkeySix said...

Love you guys. Thank you for the update and for all you are doing for Darci. Hugs and prayers

Mel Eppich said...

I can't even begin to imagine the journey you are on. I'm so grateful that you have had some good news and some awesome adventures. Your sweet family is in my thoughts and frequently, specifically, in my prayers. My heart aches for you. I'm so grateful that you are living this life to the fullest with each moment. Sending love.

Blake Boulter said...

Thank you for the updated 411. As you know both of you are loved by so many people that are constantly praying for your family, as am I. Just know you are not going through this alone. If you need anything..a friend who listens, gives advice, prays, or can be a punching bag you can take your frustration out, all you need to do is ask.

Beth Willmore said...

Thank you for the update Chelsi. You and Trevor are such amazing people, and he's lucky to have you by his side!

I just want you to know that I have put your name on the prayer roll at the Rexburg and Boise temples within the last month. I hope you can feel the love and prayers from the Willmore family!