The Fight

    

     This might be the pain-of-our-situation talking but I'm going to be a bit feisty for a minute.  Mark and I are in the fight of our lives.  Some have suggested that we have 'given up the fight'.  I want to say a couple of things about that.

 

    Mark and I are deep thinkers, and bold action takers!  We are not just sitting around waiting for cancer to steal our hope, our time, our future.  We've been presented with lots and lots of medical, spiritual, and holistic options.  We study these carefully, and have  experienced many of them.  I recently shared the following with someone who didn't think we were in the fight:

 

     "I love and appreciate your advice. Please know that we've investigated a number of holistic methods of healing (and have used several), Mark is a master at self-mastery techniques, he is a spiritual leader in our community, he is a teacher of energy channeling for over 15 years. We've studied nutrition and the best ways to strengthen his immune system. He has had cancer for almost 3 years now. Mark is stage 4, has 14 tumors in four areas of his body. We have consulted with Sarcoma experts across the nation. We are making our choices based on EVERYTHING we've studied and tried. It is our choice, and I promise you, every day it gets harder. We exercise faith, we know that the Lord's plan for us is a collection of events, some yet to be discovered."

 

      I also want to say something about time and about survival.  The Victors of cancer are NOT just the ones who outlive treatment.  The warriors, the heros, and the victors are the ones who live each day as a gift.  While life is very precious, each of us is only given a certain about of time, and it is how we choose to spend that time that ultimately matters the most.

 

      In the bible it reads, "For whosoever will save his life shall lose it: and whosoever will lose his life for my sake shall find it."

 

     I love how Mark is living his life.  He has found a moderate balance of work, rest, play, reflection, teaching, silliness, loving, study, healing and service. 

 

Mark and our children on Bear Lake this summer

     There is something beautiful about acceptance.  There is something incredible about understanding that we are not in control.   The real fight is doing our best with what we have been given.  We've been given a lot. 

Beautiful Heartache

     When Mark was first diagnosed, on February 17, 2010 life changed really quickly for us.  We were overwhelmed.  I didn't discuss all the details with very many people.  I did open up a very vulnerable on-going email conversation with our friend Beck Berrett.  I've re-read that thread on occasion, and it has helped me to better understand this process.

     The other reason that email thread became important to me was that I used my own words to help me write a song.  Great artistry comes from deep, raw emotion.  I hoped to capture and to save our experience.  Here are the lyrics;

Beautiful Heartache

"We're hanging in there,"
I tell them when they ask
but we're facing fears too often and too fast.
I find myself in new territory
a place much bigger than me.
In all this uncertainty
I ache for normal
I ache to know
everything will be OK
I'll be OK.
Free-flowing tears
mercy reappears
beautiful heartache, beautiful heartache
I feel nothing else
I release myself
to beautiful heartache, beautiful heartache, beautiful heartache
A thousand miracles I see them everywhere
a thousand hearts united in prayer
We know we trust eachother
with our whole lives
I'll always be at your side.
In all this uncertainty
I ache for normal
I ache to know
everything will be OK,
we'll be OK.
Free-flowing tears
mercy reappears
beautiful heartache, beautiful heartache
I feel nothing else
I release myself
to beautiful heartache, beautiful heartache, beautiful heartache.
The air is charged with expectation
the rain lets go
the sun rays flow
I'm looking for the answers and the rainbow.

I've performed this song at the house concert we host in October.  One day I hope to record it.  I'm not a great singer, guitar player, or songwriter, but I love doing all three.  I definately treasure this song.

I've even caught Mark singing it to himself. 

     I still ache for normal, and wish I knew how everything was somehow going to be OK.  I'm an organizer and a planner, so uncertainty really sucks for me.  We continue to be asked to take steps into the unknown.  We make plans, we cancel plans, we wonder how far in the future we can consider plans...

Processing some bad news today

     The Huntsman Cancer Institute in Salt Lake City is beautiful.  It has a gorgeous front entry.  Valet parking with friendly guys who recognize our faces.  The helpful front desk  knows our names, as does the sweet lady in the gift shop and older man in the Bistro who always tries to give my youngest daughter a cookie.  The art work along the hallways is impressive.  There is a person who travels from one waiting room to another with a cart of drinks and snacks that she serves for free and asks you how you are doing.  The walls of windows provide an impressive 180 degree view of the Salt Lake valley.  All that being said, we hate going there.  There is always a physical, negative reaction as we pull our car to it's front entrance.  Today was no different.

     Did you know that there are several different types of chemo?  I didn't know that when we began this journey.  Each type of cancer uses the chemo regiment that has the best track record for that situation.   Sarcoma, in general, has a reputation for being resilient to chemo treatments.  There are three chemo regiments that have worked to slow down, and possibly shrink sarcoma tumors.  We were told how challenging chemo treatments are for the patient.  We were told that even when chemo appears to be working, at some point the cancer learns how to resist it and the chemo would eventually become ineffective.  There were several things for us to consider about which chemo to use, dosage, managing not just the symptoms of cancer, but the side-effects of chemo, and how to create a strategic game plan for treatments.

      Chemo treatment is like a game of chess.  The two players being Mark and his cancer.  Mark takes the chemo then we watch for two things; 1. Is the chemo effectively helping?  and 2. How is Mark's body tolerating this chemo?  Then after a few weeks we do a CT scan to see how the tumors are, and evaluate how Mark is tolerating, then plan our next move.  We do this over, and over, and over.

     We began chemo treatments in September 2011.  Mark has completed 14 rounds so far.  We made a choice to begin with the chemo called Amrubicin, and it turned out to be the correct first choice.  It 'bought' us 6 months.  We did 10 rounds of treatments, with not-severe side effects.  Mark still had his gorgeous head of hair, which other chemo patients in the Infusion Center were quick to point out.  When the scans made it clear that the tumors were growing again, we switched to a chemo regiment of Taxotere with Gemcytabine (Gem/Tax) for two rounds.  Mark lost his hair and was very sick.  The first follow-up scan revealed the tumors were growing.  We immediately stopped that treatment.  Our third option is the "gold standard" of Sarcoma chemo treatments.  We were preparing to begin with a regiment of Doxorubicin with Ifosomide, when something new came along.

     The timing on this clinical trial was amazing.  Mark fit the criteria perfectly and a team here and back east rushed around to get Mark started asap.  Mark became the 4th person in the nation to be able to take advantage of this treatment.  Our oncologist was excited, and our oncologist doesn't get excited! 
We had even seen a news clip about this treatment that my Dad had come across.  The doctors in the story were raving that this might be the cure for cancer.  It lifted our hopes!!  This clinical trial is called MDM2 Inhibitor, I studied everything I could get my hands on.  All you need to know is that it looked very promising!  On July 5th we began this clinical trial.  Due to many follow-up scans we had to travel to Salt Lake a lot.  It was very obvious that Mark's body didn't like this treatment.  He was so sick.  Managing the side-effects became our full-time job and we were very discouraged.  Mark completed two full rounds, fighting through the bad days and determined to continue with this treatment. 

      This brings us to today.  This was the first CT scan to check and see how cancer had played it's turn during this chess move.  What we needed to hear was that the tumors were stable or even shrinking, so that we could take advantage of several more rounds of this exciting new chemo regiment of MDM2 with Doxorubicin.  That is not what we heard today.

     All of the tumors appear to be growing.  Not fast-growing, but when they grow through treatment, then that treatment is considered ineffective.  Not only that, but a new tumor was discovered.  This makes 15 tumors in total, located in his hip, leg, and in his left and right lungs. Without even a discussion, Mark was pulled from the clinical trial. 

     At this point Mark reached over and took my hand.  We know that in that moment a big piece of hope was taken from us. 

     We are taking a break this week before our next chess move.  The plan is to try the other chemo that is considered the gold standard of treatment, since we already tried the Doxorubicin, now we'll try the Ifosomide. They are usually given together, but it is possible to do them separately like this.   It requires a 5 day stay in the hospital.  We'll need to arrange our lives to accomodate that.

    This process is draining on our family in every single way, and it just doesn't get any easier.  The only positive thing about today was that between scans and our meeting we had time to go on a date, just the two of us.  We ate frozen yogurt at TCBY then went to the dollar movies to see Madagascar 3, which made us laugh and laught.  Chris Rock singing; "polka dot, polka dot, polka dot.....afro"  is still stuck in my head.

    Thank you for checking in with us.  Thank you for the prayers, positive thoughts, hugs, and love.  We love you too.

    

Indian Summer

Summer is winding down. 

Today I rode horses with our LDS young women's group.  I enjoyed some quality time with my daughter Ammoriah.  She is riding Ruben.

 I was riding Taz.  We enjoyed beautiful Logan Canyon among our great friends, talking about everything under the sun.

 In the past week we've tried to enjoy outdoors as much as possible as summer turns to autumn.  Here are Ava and Amari at Logan Marsh. 

We've had particular interest in Willow Park Zoo this week due to a mother peacock sitting on three eggs.  Ava was so curious about the eggs, wanting to bring them home and raise them herself.  She settled for collecting feathers instead.  Ammoriah and Amari were happy to help find the good ones.

We bask in the quiet moments of normal life.  Life around here is anything but normal.  Tomorrow is a big day for us.  We learn weather or not this chemo is working.  We have put a lot of hope into this process, Mark qualified just moments after it became ready for public use.  He is the 4th person in the nation to use the MDM2 inhibitor (along with the gold standard treatment of Doxorubicin).  This process has been so hard on him.  In some of the darkest moments I asked him if it was too much to bear.  

Mark always answered, "not yet."

Sometimes when we have these big meetings with our team of doctors and nurses who help us make sense of the CT scan results, we are flooded with new information.  Unfortunately, sometimes we have to make big decisions in only a few minutes.  Sometimes our choices are obvious, sometimes they aren't.  The responsibility of making the best choice weighs heavy on us.

 

How are your kids doing??

The answer to that question depends upon the day.  My kids are incredibly resilient.  They are so interesting to me.  They aren't as emotional as I am, and tend to take each step in stride.  Not that this has been easy, it has taken it's toll on them.

They talk openly with us.  They ask us direct questions.  We discuss the Plan of Salvation with them.  We tell them of any big news first, before talking to our parents, extended family and friends.  They say some incredibly mature things.  They will have to grow up faster than some of thier peers.

Sometimes they don't want to talk about it.  They really want to be just like everyone else.  This isn't easy when our mixed family has a blonde-haired, blue-eyed boy is standing beside a full african-american girl, and three girls of mixed races all pile together as siblings.  I guess we aren't like everybody else.  If you see them, go ahead and ask them how they are doing, and what they are up to but don't ask them for an update on thier dad.  It's hard for them to articulate.  You can ask me.  I'll tell you.

My kids have a testimony of God's plan for us all.  They know that a loving Father-in-Heaven will provide a path that will carry us.  Sometimes we have to be reminded but the faith is there, even when the fears creep in.

Thier Daddy has 14 tumors in three areas of his body.  He cannot play basketball with Andrew anymore.  He doesn't play tennis with us, or carry the little girls to thier beds.  He cannot join us in some of our activities, but he finds ways to be in thier lives constantly.  He does homework with them at night.  We used to study scripture together each summer morning on our deck.  He gave them father's blessings before they started the new school year.  He gets after them for slacking on chores.  He'll watch movies, sports, or cartoons with each child and talk and laugh with them.  He takes them swimming.  He tells them often how much he loves them.

Not long ago Ava was talking about someone who was sick and had to stay in bed for a long time.  I reminded her that her Daddy was sick too, and had to stay in bed for a long time.  She said, "yeah, but Daddy's gonna get all better."  That would be nice.

How am I doing??

For well over two years now,  I'll usually tell you the same thing, "We're hanging in there".  What else can you say?  I feel like if I told the truth I'd be the biggest 'Debbie Downer' at every gathering.  Sometimes I give an honest answer, and when I say the words out loud they are hard for me to hear. 

I'm not one of those people that cling to the happy thoughts at all cost in sheer determination and hopes that the bad stuff will somehow go away. 

I'm also not one of those doom-and-gloom people who looks at the worst case scenario and gives up.

 I am full of hope, I'm an optimist, I love the sunshine-and-roses side of life, AND I ask questions.  A lot of questions.  Some people wouldn't ask the questions if they didn't want to hear the answer, but not me, I ask.  Then I research.  I study anything remotely helpful about our situation.  Then, I try to find a place in between these two extremes, and get comfortable there.  It isn't easy.

The truth is I'm not OK.  I haven't been for a long time, but like I said, my heart is still beating and I have lots of joyous moments that heal me.  I have a husband who adores me, and who helps me get through his cancer experiences with him.  He still creates magic in our marriage.  He is at peace with this situation and that helps me and our children tremendously. 

Do you want to know the secret to getting through difficult trials?  Don't go it alone.  I have Mark.  I have my family.  I have about a zillion amazing friends.  I have neighbors, community, friends-of-friends, spiritual leaders, and strangers that have prayed for us, brought us meals, brought us flowers, brought us treats, mowed our lawn, shoveled our driveway, mailed us cards,gave us hugs, gave us sweet facebook messages, created memories with us, hosted and supported fundraisers for us, checked on us, gave us veggies from thier gardens, did 12 days of christmas for us, made a gorgeous picture quilt, made a blanket to take to the Huntsman, drove to Salt Lake for us, watched our kids for us, loved us, prayed for us some more, fasted for us, put our names in the temples, and in every way let us know they love and care.

This weekend I had lunch with my good friend Nancy Lucas, then enjoyed a BBQ and outdoor movie with the Oswalds, Keens, Haws.  On Saturday, we attended Trent's funeral surrounded by good friends Nancey, Stephanie and Kristin.  Then our friends the Loveridges drove up from Herriman and we spent the afternoon up Logan Canyon skipping rocks, talking and eating chinese food.  Sunday was church service with a million hugs and well wishes, then our friends the Gardners came over to visit, eat watermelon, watch Singles 2nd Ward with us, and help me re-braid Aubrielle's hair.  Today I went to lunch on the patio at Elements, with two amazing women Cindy Maughan and Sheri Ward who reminded me to take a deep breath and feel the love around me.  We are so blessed.  We are constantly reminded that relationships are what matters the most in life.  We hope to continue to make memories. 

Life is precious.  People are precious. 

How am I doing?  I'm not OK, but I'll be OK.  For now I'll focus on what is right with our life instead of what isn't.

If I have to start somewhere...

I guess I'll just start with today.  I've said many times I couldn't do a blog.  However, my life has been forever changed by a blog by my good friend Holly, who shared the details of her life while caring for her husband with cancer.  We attended the funeral of her sweet husband Trent just yesterday.  Holly and Trent's story has profoundly changed ours.  So, to continue to carry the torch for those who struggle with sarcoma, and to share this journey with our children who will have many questions one day, I've created this blog.

My husband Mark has stage 4, De-differentiated Liposarcoma.  Sarcoma is a rare form of cancer, a one-in-a-million diagnosis.  He was diagnosed on Feburary 17, 2010.  That year he went through 5 weeks of highest-dose radiation, on 7 areas, and he was in so much pain he couldn't bear the drive to and from Salt Lake City, so we lived in a hotel.  Then there was surgery to remove the primary tumor, the size of a small football, in his left hip.  There was some talk of removing the leg.  Fortunately this didn't happen, and after a week at the Huntsman Cancer Institute, we came home to our 5 children who really had been missing us.  Thank heavens for the help of friends and family!

We enjoyed 8 months of weakened but good health, but on March of 2011, the CT showed local recurrence ( a new tumor growing in the primary location).  Mark's cancer is highly aggressive, and because radiation had not slowed the growth prior to surgery the last time, they reversed the order and did the surgery first.  Again there was talk of removing the leg, and fortunately this did not happen.  The surgery took 8 hours, and the bad news was they were unable to get negative margins.  That means that in addition to taking the diseased tissue, the doctor takes part of the surrounding healthy tissue in an attempt to prevent recurrence.  Next, Mark endured 6 weeks of highest-dose radiation to 13 areas!  Mark has now had the max dose of radiation to the area, and they will not allow more.  We again lived in Salt Lake City, and by the grace and love of many family and friends we made it through that challenging time.   

A follow-up CT scan on July 8, 2011, revealed our greatest fear had happened.  Not only was there local recurrence, but this time multiple tumors in both of his lungs.  This means that Mark is terminal.  I have so many good things to say about the staff at the Huntsman, but that moment we were given that particular news was not handled well. That certainly wasn't the first time I cried and cried, and it won't be the last.  I called my Dad and told him that my heart was broken, and it still is today, but my heart still works and we keep living life as much as we can.

When you switch gears from trying to save a life, to trying to make life as comfortable as possible (palliative care), priorities become so much clearer.  Life is sweeter, love is deeper, all moments are more precious.  Some might say that they are greatful for life's big trials because of the blessings, but I still think that cancer sucks.  It's ugly, it's painful, it's terribly inconsiderate.

This past year has been spent trying chemo regiments.  Mark has completed 14 rounds already.  They are incredibly hard.  We also discovered that he has a blood clot that runs the length of his bad leg, and he lives in pain every single day.  Through all of this Mark hasn't stopped working, he has a smile on his face and will say that he's doing OK.  He's a warrior like that. 

I'll share more as time goes on.  This is a lot of information,  but I had to start somewhere.