Christmas time is Here

      Mark is finally doing better.  It was several days of muscle cramps and pain in his side and back, a dozen trips from Home Health, lots of phone calls and guesswork. At times it was really bad. I pray this doesn't come back.  Mark still cannot lie down flat, he sleeps in a recliner.  His energy is low, low, low and he has foggy, chemo brain most of the time.  
      There have been some nice moments lately, surprise gifts and cards, treats, kind words and quiet times to sit under the tree, by the fireplace, or watch the snow fall.  Lots of people are carrying a heavy heart this holiday season, life can be very tough.  I hope we all find those moments of comfort and joy. 

Crazy Couple of Days

It's been a rough couple of days for Mark and I.  It started in the middle of the night, strong, sharp pains on his right side, near the cracked rib.  Mark has been in serious pain.  We tried pain meds, heating pad, sitting him in a recliner, meditation, prayer, anything that we could think of.  They might be a muscle spasm, but they are really aweful.  We finally spoke to the Huntsman team and home health and we tried different meds.  This works, but only for a few hours then the pain comes back with a vengeance.  It's been a huge challenge to decide what to do.  When the pain is at it's worst Mark's breathing becomes labored and this was a big concern for our nurses.  We've discussed going to the ER, but they already know that they will run a series of tests and have limited ability to help Mark in his unique situation.  If this situation doesn't improve we'll probably need treatment at the Huntsman. 

I was able to step out a little while Mark slept.  Life goes on.  My friend Susan is in town over her birthday weekend, and we managed to get four of us together for lunch at her favorite place Mandarin Garden.

Me, Nancy, Karen & Susan at Mandarin Garden

 On Friday, my girl's had thier last day of school before the Christmas break.  I went to Ava's second grade class party.  Here she is with her classmates playing "Don't Eat Pete!!"  She's kinda shy and as we were leaving to go home she asked me if I would come to the next class party and said, "It's fun when you're here, everybody likes you."  It's not hard to win over a bunch of 7 year olds, unless you're shy.  Interesting statement from Ava.

 Next was a craft to decorate snowflakes, followed by igloos made out of sugar cubes and frosting. Sticky fun!

 Ava with her buddy Ariana after they got thier books in the book exchange game.  Right after this party we came home and learned the news about the shootings in the Elementary School in CT.  What a sobering thought, what a tragedy!  My heart goes out to all of the innocence lost on this day.

 I stopped by the Haws open house for an hour to get hugs, eat yummy food, and share a few laughs.  Here's Marc Haws on Greg's lap telling him what he wants for Christmas because he's been so good this year, ha ha!

 Our friends the Oswalds and the Gardners, we love you all so much.  We sure love you guys!

Wanna hear something kinda interesting?  There is a place on the blog for me to see which countries are reading it.  I thought that was cool, and I learned that in addition to my friends that live far, far away such as Jason, Holger and Shalise in Germany, Nadine in Australia, lots of friends in Canada, and Jeff in South Korea, I have mystery friends in Italy, Russia, India, Isreal, Sweden, United Kingdom and Indonesia.  So either my friend Theresa who is a flight attendant, is reading from her layovers, or I've made some new friends in the world.  I just wanted to say "hi" to them. :)

Chaos as Usual

     This picture was at the end of a super long day (Monday) and our nurse Syd keeps us smiling :)  Her hat really did blink off and on and was pure silliness, which was welcome on our serious day of testing, results, processing, worrying, and planning.      Mark is super weak, in more pain in his rib and legs, and has trouble waking up in the mornings.  None the less he is working.  We went to our ward Christmas dinner tonight and he was talking and laughing the entire time.  He's pretty wiped out now.
    The kids don't slow down, Andrew has 5 am basketball practice, I'm leaving right now (10:30 pm) to pick him up from his out of town game today.  Grades are rough. I drive the girls to and from  Thomas Edison every day. Aubrielle dances for 6 hours each week.  Ammoriah started taking guitar lessons, and is finishing up a Broadway music performance workshop.  Ava has Math club after school, and dance class.  Amari has dance too.  I have had a personal assistant off and on for the past two years that helps me about 20 hours a week, but I've just learned she has a wonderful opportunity to work at a job in her field.  I will be the full-time taxi driver, tutor, cook, cleaner, referee, bathtime/hair done/laundry caught up, overall in charge of every little thing in addition to my work as a life coach, teacher, assistant in our business, and in Mark's health care.  Ugh.  White flag time?  maybe

Good News....Chemo Round 19

     We are considering todays news as good news.  The best we could hope for is for Mark to continue to do rounds of Ifosfomide.  And he will.  The chemo is working on most of his tumors and we will continue with at least two more rounds of this.  Even when this drug stops working there are a couple more chemo regiments to try although they don't have the same success rates as the ones we've already used.  We have definately "bought" time.

     Our good news always seems peppered with some bad news, and I'll share that too.  There are two new lesions in the bone, one in another rib, and one in his pelvis.  There are no plans to radiate but they will discuss options at the monthly sarcoma meeting.  While it is true that most tumors are shrinking, there are 'several' tumors slightly growing.  I don't like reading the report and seeing phrases like 'worsening metastases', and 'new septal lines in the upper lung zones' (fluid and inflamation).  No one knows exactly how many tumors Mark has, but the number is somewhere around 18.  Today we start round 19 of chemo, that seems like such a high number.  When we started chemo, more than one doctor told us we'd probably do "4 or 5 rounds".  Hard to believe we're at 19.  The largest tumor is in the primary site (left hip) and is 4.5 cm.  The largest lung tumor is 3 cm.

     So, here we sit at the Huntsman Infusion Center with the cute nurses wearing holiday earrings and light up santa hats. Somehow it does make this experience a little better.

Winds of Change

     We just wrapped up a perfect week!  We've had lots of fun at home, getting out, and making memories!  The weather has changed right as the good week comes to a close.  Instead of sunshine and wearing jackets, we have snow and bone-chilling winds.  Winter is here.  Today we drive to the Huntsman for the dreaded CT and evaluation meeting to decide what our options are and what we can do.  These days are hard.

     Fortunately our weekend was full of fun and laughter.  We spent Friday with the "Fremilies" in Franklin (say that three times fast).  We had a big Mexican meal and tried not to go crazy with the hot peppers.  We watched Ghost Adventures and Battleship.  Great company, great laughs, lots of love. :)
     On Saturday we had our super date with our friends the Oswalds, Gardners and Clawsons.  We love this couples event, we drive the limo to Downata Hot Springs for a great dinner, and soak in the hot springs.  We always have a water volleyball game that is quite lively as the women vs the men and there is plenty of heckling, teasing, and let's face it, cheating.  My favorite part is the victory cuddle after each match.  The steam coming off the water isn't just from the hot springs!  Wowza!  Pictures are below. 
     Sunday we wrapped up a great weekend with church meetings, temple recommend interviews and a lovely visit from Mark, Dawn, Feliza, Izzy, and Landon Martineau.  What a peaceful, Christmasy day.

     I will send an update later today and share whatever news we receive.  We thank you for all the love and prayers, which is why we are so peaceful as we enjoy our brunch at Denny's.  Somehow there will be a path that we will be able to manage.  In God we trust, as always.

Our cheesy group picture :)



Steak Dinner the guys surprised us with roses, a treasure box with a diamond that said, "To me you are flawless".   The women gave the men a christmas card and an ornament with roses that said, "All I want for Christmas is you."



The couples all slow danced to several wonderful songs including "Night Before Christmas" by Amy Grant

Our soak in the hot tub just before the snow started to fall.  This really was a perfect night!

Technically we didn't win the water volleyball game, the guys won the first two games and our win counted as two, so we actually tied.  The women's team was called "Diamond Rose" and the guys were "Glitter Balls" (referring to the christmas ornament we gave them).

The limo ride home included sparkly cider which was more than Greg could handle.

Cheers to great friendships and lots of great memories together!

The "Good Week"

When Mark is off the chemo drip we get one week before heading back to the Huntsman.  During this week we try and do the fun things we haven't been able to do while he is sick or weak.  We've been to Sport's Academy many times to go swimming.  We enjoyed our son Andrew's first home basketball game (the team is amazing, Andrew was high scorer and the team won after overtime and a fortunate 3 point basket at the end of the game!)

Then came our magical Thursday night:



My sister Renee, me and our brother Mark who looks like he has a really long arm to hug us both at once!

        My sister Renee and her husband Jason live in Boise.  Jason has been on tour for weeks now and when we heard they were playing in SLC we knew we wanted to go.  My brother Mark joined us and us siblings met at City Creek to enjoy the lights and a delicious meal at Cheesecake Factory.
My  We had hoped to walk around temple square and see the lights but it was obvious Mark was not up for it.  We joined our friends at the Urban Lounge for lots of fun!


Kay and Eric




Me and Cindy




Mark and Jason




The Clumsy Lovers; Jason, Trevor, Robyn, Jeff and "Davy Jones"



Music = My Therapy

 I have a lot of talented friends.  The kind that inspire me and teach me how to grow and improve in many areas of my life.  Music has always been a comfort and joy to me.  I love and appreciate lots of different music.  I've written songs since I was in high school.  Over the years I've sort of found my niche.  I don't claim to be a good lyricist, songwriter, guitar player or singer, but I can do enough to create, expressing myself in a healing way.  I love the process!

My musical friends Jay Keller and Dan Smith have invited me to participate in thier musical creative sessions where we work on orginal songs and challenge eachother to improve (wink, to the "Tempo Nazi" who shows me how to keep a regular, steady beat!)  The constructive critism and brainstorming of ideas is really helpful!  We'll also share songs we love from other artists, and just jam together. 

Dan has been helping us record our music, which is a huge bonus because a traditional recording studio costs beaucoup bucks and someone like me would waste a lot of time there just figuring out what I need and how to do it.  Dan is the man, he just tries a lot of stuff and we lay down different tracks.  It's a little scary, but also really exciting, to hear my songs this way.  It has really inspired me to keep writing new material.  You can imagine, I have a lot of life experience lately to draw from!

My current project is a song called "Disappear" that is my processing as best I can, loss and grief.  My thoughts are of course about Mark, but I also think heavily of my friend Holly and how painful this time is for her.  There are no words to heal her heart, only seeking ways to survive.  I don't like the word 'survive'  it is like the body is there but the person has been broken into a million pieces.   Turns out I know a few amazing women who have lost the love of thier lives, I honor them for thier ability to sacrifice and somehow live on.  For Holly, Stephanie, Heather, Jenny, Claudia, Sharon, and many others who know this type of grief and loss; this song is for you.  Here are the lyrics, and when it's put together, I'll post the recording. :)

Disappear

I watch the rain

my eyes anticipate tears

raindrops fall in puddle

in circles of acceptance

and proves to me how easily

I can disappear

My thoughts are just words of people

talking too fast

I don't feel a destiny

that once felt heaven blessed

Hold me now

if you could, hold me now

would my fight and fear disappear

to breathing and being?

Isn't clear if I'll disappear to memories or healing.

I watch the ground

my heart stalled

by a burden of tears

Sometimes we live

where tumbleweeds and people

are so unattached and

matter-of-fact

that I disappear.

For now I hold back

let the flock fly out in front

and flow like that

in the draft that pulls me up

til I'm strong enough to soar out on my own again.

Dan, Jay and JD jamming

Dan recording Jay who is laying down a drum track to my song "Into the Blue"

Dan playing my purple guitar while Jay plays my Djembe, they always sound great even when goofing around.