seattle fan

We are moving forward with the Seattle trial.  If all goes well I may be able to start July 7th.  I will still need to qualify, but we should know if I do most likely after a colonoscopy.  Working on getting one of those soon.  Cross your fingers, I would be very excited to get into this.

Thank you for your sympathies and well wishes.  We are having a lovely summer, despite the uncertainties.  We are our better selves when we have a clear plan of attack, but seem to be doing just fine knowing that things are moving along.  I love feeling healthy and am just thrilled that I can still ride my bike against the wind, play basketball with the boys, and stay up late with Josh.  Feeling healthy is such a blessing.

not great

I miss yesterday's life already.

Scan results were as my doctor put it, "not great."  The good news is there is nothing new in the brain or elsewhere.  The bad news is those tumors hanging around the kidney have joined together and are invading the kidney, duodenum, and liver.

The cancer is spreading.  We have to treat it.

I have already tried radiation to this area.  Surgery would be pretty major right now (may include kidney removal and a colostomy bag).

My first choice is the TIL trial in Seattle.  I will call them and get the details of qualifying.  The big hurdle will be the colitis I had at the beginning of the year.  I will need a colonoscopy free of inflammation at the very least to qualify.  I need to make sure that is our only challenge, and then figure out timing.  It seems like they have to take the cells they have frozen in Seattle and multiply them even more and I don't remember how long it takes.

Second option would be the braf inhibitors.  I have a mutation in my cancer cells that allow for a quick and amazing response to these drugs.  They work within days and they work on most who have this mutation.  The trick is, they are effective for only so long.  I have never been super interested in this drug because I am not interested in a few more months of life.  But, I need to remember there are people doing well for years on the drug.  And we would be using them to shrink those tumors down to allow surgery, and then I could come off of them.  Not ideal in my mind, but I could get used to this.

How horrible for my husband to hear (I wanted to cup his ears so he wouldn't have to).  What an awful situation to explain to my kids (I could have squeezed them and cried like a baby, but I'm the mom).  It hurts to type it out (it makes it real).  But in the ultimate act of betrayal, my body is taking over.  It is what it is.

So tonight we morn.  Tomorrow we research.  This week we decide.  And then, we fight.

I worry tonight that I don't have what it takes.  I don't know what it's going to take, but I also know I have more strength and courage to give.  I hope they at least match up.

summertime

We started the summer with a quick trip to the coast.  It was the perfect distraction for what is coming tomorrow afternoon: scan results.  Anxious mess ever since we got home.

Of all the attractions in San Diego, my kids chose an aircraft carrier museum.   I don't get it, but all the boys were on the same page.  "AWESOME!!!"

Our hotel had a non-chlorine, heated, outdoor pools.  All day fun.

Underwater selfie contest.

Winner?  Teenagers are super fun.

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Boogie boards!

They only make sandcastles now to destroy them with sand bombs.  We have lost all the artistry of the job.

I think I feel closer to God on a beach than just about anywhere.

It is so comforting to me that there are still things to be discovered at the bottom of the ocean.  

Everything I love.

This guy too.

Love spending uninterrupted time with my family.   Yes to family vacations!

catorce

This week Josh and I celebrated our anniversary.  14 years!

I kept thinking how fun how fun it has been to share my life with someone.  My children.  My passions.  My dog.  My house.  My dinners.  My jokes.  My toilet.  My talents.  My socks.  His paycheck.  My bed.  My joys.  My heartbreaks.

The heartbreak part is not necessarily fun, but I don't know how I could have kept that to myself.

I have wanted to marry Josh since I was 12 years old.  I had no idea what that even meant back then.  I honestly don't think I had a really good idea at 21, when it actually happened.  I thought our love had maxed out the day we knelt over the alter.  But at that point we had only promised and wanted to be there for each other through sickness and health, happies and sorrow, for better or worse, richer or poorer.  14 years later we have loved each other through all these scenarios.  I now have a better idea of what marriage is.  It is more complicated and more amazing than I ever imagined.  Hoping for many more years together.

Our honeymoon was fantastic!  We did a dinner with family and close friends after the wedding, and used the money my parents gave us for a reception to fly to the Yucatan Peninsula.

I had the brilliant idea of saving some cash and sleeping in our hammock tied to a couple of palm trees on the beach one night.  We checked into a hotel by midnight.

At one point I walked into a salon in Merida and cut my hair 'short' for the first time since I was a little girl.  Josh told me I looked like a school teacher.  Suddenly I looked like a very hurt and dejected school teacher, "What?!"  I was supposed to look like a bride!  Josh on the defense, "Hey!  I know a lot of hot school teachers!"  "WHAT?!"  Because of course, I was suddenly the only hot person he knew because we were married.  First year of marriage fights.  Awesome.

Josh's face.  So funny.  Hey, we had waited a long time for the share-your-bed part of marriage.  ;)

angles landing

Last week Josh had a conference in Las Vegas for a couple of days.  I was supposed to be enjoying myself while he was in classes, but I just kept thinking about how I wanted to be home putting in a garden.  I guess I'm getting old.

Best part of the trip was a stop at Zion National Park to hike Angles Landing.  Utah is kind of amazing.

Downpour on our way up.

Those are drop offs on either side.  I thought I was afraid of heights but this didn't phase me.

The trail.  The view is at the top.

And what a view!  We were up on the top for a good half hour and no one ever came to take a picture of us.  We got some really awkward shots with the timer. 

A little bit better, but we are still laughing.

When your husband gets skinnier than you-hide half of yourself behind him.

Sun damage

Matching hats great for rain and sun.  It is pretty easy to stay sun safe when my arms and legs are always covered.  Just put on a hat and no sun block needed!  This hat would make a great Father's Day present (REI).

My urban cowboy.  So cute!

luke prays for me

Tonight was my night to say the prayer (the date ends in a 4.  Josh prays when it ends in a 5, James on a 3, etc.).  "Can't you say it for me Josh?  I swear it's always my turn and never your turn.  And you've been gone all week!"  "It's your night."  Josh reasons.  "I said it in Sunday school today."  "And it was so beautiful I want to hear you say another one."  He says smiling at me.  But it was an 'I'm going to win this' kind of a smile. "It's my night more than anyone else's!"

"That's a 2 year old's argument Mom!"  James chides.
"You need the blessings Mom!"  Sam pleads. 
"I'll say it for you."  Luke offers.
"Thank you Luke!"  I look smugly at Josh.  Ha!

"Dear Heavenly Father, thank you for this beautiful day and for all our blessings.  Please bless Charlotte and Sister Boyle and Brother Vanderveur and Stockton and Mom that their cancer will go away.  Please bless that Mom will get the blessings from saying the prayer, because it is her night.  Amen."

Amen.

today

The Linton's are doing really very well.  Spring is so contagious.  We feel in our bones what the world is whispering around us.  Hope, Renewal, Life, Beauty, God.  All manifest in a blossoming tree.

So lovely to be a part of it all.

I am feeling just great.  I am everyday surprised that I am in no pain.  The only complaint I have is with my arm.  The few days of heat we've experienced have reminded me how difficult lymphedema is in the summer.  And I do wonder what I will wear during those months as I now have to wear compression sleeves on my arm and leg.  But I guess when you are stressed by the what to wear question, your life is just not all that bad.

I feel like I need to share more.  Share my happiness and my testimony and my miracle.  I am most interesting in sharing with my boys, and I'm afraid I have not been good at writing anything down lately.  I will surely regret that.

So I am starting today.

Just today:

I went running with Ginger as soon as the boys left for school.  Actually I ended up walking mostly because I am very out of shape.  Ginger met cows for the first time and she was not at all impressed.

Lehi in the spring

I came home and picked up the house.  Josh has been out of town all week for business and I have not been cleaning or cooking (my boys ate home-made refried bean burritos for 5 days this week).

I got bored of cleaning before I finished, so I called to chat with my BFF from college.  Her voice always makes me happy.  She didn't mention that she was going to show up at her daughters'gorilla report dressed as a gorilla.  I saw this on instagram later today and had a good hearty laugh.  No one does that.  Sometimes I tell Josh about her antics, particularly related to holidays, and he is quite shocked.  Let's just say she goes all out.  In a very good way.

I had to hang up to shower (something that also doesn't happen when Josh is out of town). 

I had to shower because the boys had dentist appointments.  James had 3 teeth pulled, and Luke 2 cavities.  This is pure torture.  Not so much for the kids, but for me.  I have a very bad taste in my mouth when it comes to dental work.  I once lived through a root canal that they could not numb (it was infected and I guess that can decrease the effectiveness of the lidocain).  I was never the same after that.  Fear of pain entered into my life. 

We are listening to a Jeeves and Wooster book on CD on our car rides (the Lintons broke down and got a library card).  LOL.  My kids don't quite appreciate British humor yet, so it was just me in the front seat laughing.  I glanced back to see if anyone else thought it was hilarious.  But no.  Just me.

We got to meet Grandma Vicki's new chickens (a dog got into the chicken coop earlier this year and that was the end of most of her chickens).  The weather had us all smiling.

We came home to practice piano, but it proved almost impossible (James did play a bit) in the magical hour of sunset.  James and Sam worked on their long-boards.  Luke and I played catch until it was dark.

 May is almost too much.