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Friday, January 31, 2014

The Results are In

I'm sorry it has taken me so long to post the results from our consultation with Trevor's neuro-oncologist.

Even though we have verbally told some of you what we learned last Tuesday, I guess there is some sort of permanence about actually putting those words into print that I have been putting off.  The last couple days have been heavy for me, and I appreciate everyone's patience and understanding about unreturned phone calls, texts and emails wile I've been sorting my feelings out.

Trevor, of course, is his same happy go lucky self. He is very much a pull-yourself-up-by-the-bootstraps sort of guy, and-as usual-I'm just a couple steps behind him. After processing for the last three days I'm feeling better and we are turning a bright face toward the future.

So here is what that future includes.

The cancer in Trevor's brain has spread to a new area in the left frontal lobe. Our doctors refer to this as an "infiltrating tumor" and it is not an uncommon development in the type of brain cancer that Trevor battles. This growth has occurred in the last year, as all of Trevor's previous scans showed no signs of tumor cells.

These tumor cells are not clumped together as much as they have been in the past, so at this time the doctors feel that the potential benefits of surgically trying to remove any of the cells are negligent to the risks of such surgery.

So we find ourselves looking at chemo again. The plan is that Trevor will start chemo again this coming Tuesday. For now, Trevor will use the same kind of chemotherapy treatment we used in 2007. We are HOPE-ing (Having Only Positive Expectations) that the cancer cells will continue to be sensitive to this kind of treatment and that another 6 months to a year of chemo will again slow or stop the growth/progression of the tumor. There is a chance that because the cells have seen this kind of chemo before that they will be more resistant to it, and require a more aggressive form of chemo.

We will not do any radiation at this point either.

There were a lot of other things we discussed at the appointment--numbers and averages and mortality rates that will scare the living dickens out of us if we let them. So we are choosing not to let them.

We will live our lives in faith and not in fear.

I feel very strongly that Trevor and I have many wonderful years left to drive each other crazy and build our dream life together. He is my best friend, and I am always amazed each time we have one of these developments to see him grow even stronger. As we continue to pray for health and healing I am praying to face this next year with the same courage, confidence and corny smile that he does. I'm praying to live worthily of the privilege of being his wife.

Friday, January 17, 2014

The Next Step

The next step for anyone who wants to keep right up with our updates concerning Trevor's treatment status--and probably some posts about our cute family thrown in here and there--is to look right above this post and enter your email address is the field above. Doing so will mean that you will get an email notification every time I put new content up on the blog.

Let's face it, if you've blogged with me from the beginning you know that I have vibrant and dormant periods of posting. We are so lucky to have so many friends and family members that are concerned about the health and journey of our little family, the last thing I want to have happen is anyone to get frustrated by continually checking the blog only to find infrequent updates, or to have someone infrequently check the blog and then be surprised to learn the several latest developments at once and wonder why we didn't tell them about any of it sooner. As you can imagine, it becomes tedious for all of us to have the same telephone or text conversations again and again as we describe the technicalities of our treatment progression, so we feel that information via this blog is the best way for us to distribute what we know.

Your email is kept private and secure, linked only to the privacy settings in the blog, so you can comfortably enter your address above if you want to have the very best chances of keeping up with us.:)

The next step for Trevor is to meet with a neuro oncologist at the Huntsman Cancer Institute on January 28th. The neuro oncologist we worked with in 2007/2008 has since retired. However, we have heard wonderful things about Dr. Cole and are already impressed by our communications with his staff.  At this meeting we expect to:
  • Learn more about the doctors' opinions about the cellular behavior around the resection area in Trevor's brain (the resection area is where the last tumor was removed in 2007 and where we see the concerning cloudy activity).
  • Discuss possible treatment recommendations
  • After our appointment we also plan to eat a fabulous lunch at The Point restaurant on the sixth floor of the Huntsman Cancer if anyone is around we'd love it if you'd join us :) 
At this point we still don't really know anything---but we are hopeful about the following:
  • Because Dr. Jensen, our neuro surgeon, seems to be taking a back seat in the next meeting, we are hopeful that we are not looking at another brain surgery.
  • We also haven't heard anyone mention anything about meeting with our radiologist, Dr. Shrieve-- so we are hoping that indicates no radiation treatments this go around.
Trevor took the last phone call from Dr. Jensen about setting this meeting up, and I so wish he would have asked these specific questions..but let's face it, I'm the talker in this family. I'm already compiling questions for the 28th. 
The next step for us....Until the 28th we plan to do some more of this:
Snuggling Baby Boy
 and this.....................
Playing in the snow

 and this...............

Cooking yummy dinner s and treats together

and this.........

chase around this crawling guy
Ooohhhh...and we are also going to make our cousin's, Erin Weedop's, most amazing ginger bread cookies tonight to take to the family of another very sick lady battling leukemia....because while cancer is a very individual experience, it is certainly not a unique one. If you feel so inclined, remember a Ms. Shilea Brown in your prayers as well.

In the meantime, we will also be praying for these specific things:
  • Trevor's doctors will be blessed with knowledge and sight. 
  • The doctors will be able to best recommend the treatment that will be most effective for us.
  • Trevor's employer will continue to be understanding and supportive through this journey.
  • That Chelsi can get and keep the houses in a very sterile, clean state to support a year of a compromised immune system if chemo ends up being the route we go. (Really, I need these prayers. I hate cleaning.) 
  • We can continue to focus on all of the good these trials bring us, and appreciate the greatness of each moment in our lives.
We will be fasting for these same things, and general blessings for health and understanding on Sunday January 26th, if you'd like to join us.

(While fasting is a general Christian principle, for more information about our LDS take on it there is a great article here. Our friends of other faiths are certainly invited to participate with us in this special period of hope, prayer and meditation).

Wednesday, January 15, 2014

We Are....

Well, here we are....

It is strange to write a blog post that you hope to never publish--but that is exactly what this post is, at least the beginning of it is. You see, I'm writing this on a Tuesday night following one of Trevor's annual brain cancer check-ins at the incredible Hunstman Cancer Institute in Salt Lake City.

After six years of crystal clear scans, today we received the sort of results that are far from what we hoped for. I wish I could remember everything that our doctor said, but you know how sometimes in those moments when you are receiving news you don't want to hear the ceiling metaphorically opens up  and all the words start swirling around as if there was a Kansas tornado sucking your life right out into the sky? Words and phrases are flying around like rocks and  and trees--and cows if you grew up watching Twister with Helen Hunt and Bill Paxton--and you are just hunkered down in the storm cellar of your consciousness with part of your brain screaming, "I don't know exactly what is happening out there, but it doesn't sound good..."

There are some concerning areas in Trevor's MRI
                             Can you see this cloudy area?
                                     We need to talk with the tumor board
                                                We will call you tomorrow and let you know what we see

So, here we are.....

We are experienced

This isn't the first conversation we've had in a sterile hospital room with a doctor perched on a swiveling stool surrounded by his staff as we all peer at the poetically scientific MRI images projected onto the portable computer screen. 

Trevor had his first conversation about brain cancer and a brain tumor in 2002. I joined him in this journey for the second conversation in 2007. And here we are a third time.  If I end up publishing this post tomorrow it is because the doctor called us sometime Wednesday evening and confirmed that the cloudy areas on Trevor's MRI scans indicate that the cancer/tumor is in a progressive stage.

We are ready

We can do this, because we have done it before...and because really, what else can we do?

We are positive

Trevor's attitude is phenomenal. I have never met another person who can face tough challenges as singularly head-on as he does. Trevor tells me occasionally that I am his anchor, that I am the one who holds us all together.

Don't believe him. It is him. It's always been him.

As we talked tonight about what the future might bring we couldn't help be recall and compare today's diagnosis with our experience in 2007-2008.

That was one absolutely hellish, nightmarish year. No doubt about it. There is nothing easy about brain surgery, six weeks of radiation and 14 months of intense chemotherapy. 

But it was only one year.

And look where the next five took us.

We are a little more versed in the world

In the past five years we've had some incredible adventures. We've spent a week white water rafting on the Salmon river in Idaho. We've snorkeled in Hawaii. We've enjoyed the theater and lots of amazing food in Chicago. We've hiked across a glacier in Canada. We've lounged on beaches in Mexico. We've found hidden Mickeys in Disneyland. We've played in Newport, CA every year. We've rappelled off of arches in Moab. We've hunted in the gorgeous mountains of Eastern Utah. We've spent days drift fishing on the Snake River in Idaho. We went whale watching in San Diego. We've gotten snowed in at the Petrified National Forest. We've gotten a little frisky at the edge of the Grand Canyon. We'v hiked more than 60 miles in Glacier National Park. We've driven white-knuckled along Hell's Backbone in Escalante. We seen stars like nowhere else in the Great Basin National Park. We've camped in our backyard and we've camped at a renaissance  fair in Vegas where we may or may not have danced half-naked around a fire nearly all night long. We've done a hundred other big and little things...and we've done them together.

We are a little more educated

In the past five years we have earned six advanced degrees between the two of us--with Trevor claiming four of them. He is brilliant even with a chunk of his gray matter missing. 

We are home owners

We bought a beautiful home in Utah County where we can spend more time with our extended family. Together we've been working on honey-do projects at our Pleasant Grove place, and turning it into a happy space that reflects us more than anywhere else we've lived. 

We are animal lovers

Well, perhaps me more than Trevor...but the last five years have brought us the best dog in the world, the cuddliest kitty, the most escape-driven hamster and one incredibly resilient fish. I even have some houseplants that are pushing three years old (this is a major accomplishment). 

We are successful

We've enjoyed great professional growth in our career choices. And through our work experiences have met incredible people who will always be life long friends and mentors.

We are party people

From Halloween Murder Mysteries to birthday bashes to Sunday Dutch Oven Dinner gatherings, we are happiest when surrounded by friends and family that are dear to us. We love to put a gathering together and see everyone have a good time. 

We are parents

How could I not save the best for last? The past five years have brought us two of the most beautiful people ever born--our son and daughter. We love them more than words can express. They delight and challenge us everyday. Of all that we have created and accomplished together, these two little people are truly the very best.

We are faithful

How can we look over the last six years, and beyond that, the last 30 years both of us have individually lived, and not acknowledge the great hand of God in our lives? We know that our Heavenly Father is mindful of us, that the difficulty of mortal trials is trivial compared to the glory of eternal perspective. We believe fully in the gospel of Jesus Christ and in the greatness of humanity. We have felt the power of prayers and warmest of energies from friends of many faiths, and this love and hope on our behalf sustains us and makes our human experience on this earth all the more rich.  Please continue to keep us in your thoughts and prayers.

We are grateful

As you can see, the past six years have brought plenty to be grateful for. Above all, however, they have brought the sweet enjoyment of family and friendships. We were humbled tonight that within only an hour of sharing this development with our parents our siblings reached out. Trevor's sister Hillary and brother Justin called immediately. Sweet Hillary is planning to come stay with us in the next weeks as a bright spot in between doctor appointments. My sister Lacy had ordered us pizza for dinner tonight, it was delivered warm and wonderful to our front door minutes after arriving home from a long day of doctor appointments. We've spoken to our parents, grandparents and aunts and uncles throughout the day.  Really, when one person gets cancer their whole family and everyone who loves them also get cancer--and we have felt that ring of familial love and sadness and hope and determination wrap around us today. 

We are living every moment

We are facing a hard challenge
                                 But we ARE ready
We are looking forward with hope and grace
     and we ARE going to make the next                        six years even better than the last. 

*We will post updates on this blog as we get them, however we will be moving the blog to a private setting. If you want to follow along please leave your email address in a comment.