Chemo Round 16

     We've been here since Wednesday morning.  This time there was a surgery to put his port into his chest prior to administering Ifosfomide.  Pretty soon time becomes irrelevant.  All the days and minutes blend into one long hospital stay filled with moments of work and worry. 

     When Mark has energy and isn't too sick, we have been working.  A LOT.  This is the end of the quarter so we have correlation meetings, updates to file on each of our clients, and billing.  I've been taking over more and more of that part of our business. 

    When he is super tired and sick, then I worry.   I do all I can to improve each situation, but we're so limited.  Things don't go the way they tell you it's going to.  Plans are made and broken frequently.  Mark is tired of telling his story over and over to every single doctor, nurse, and aid that pops thier head in here.  We get one of these about every 15 minutes, round the clock, especially when the IV machines like to sound off the alarms.  The highlight of the day is sitting or walking on the patio, and the carrot cake.  Room service makes a mean carrot cake, and Mark orders it for every meal but can't finish it (what to do, what to do :)

   The Princess and the Pea, you know, the fairytale about the girl who was so sensitive that she couldn't sleep due to a pea on the bottom of her stack of mattresses?  Anyway, I think we're related.  I never thought I was picky, but hey, these chair/couch beds suck!!!!!  Last time I was here it was a newer couch bed, and with my foam pad on top, it was great.  This time, it was not good enough.  It has several different heights on the pull out sections, and a huge gap between the two sides. After the first night here, waking up with a stiff neck and shoulder, and restless sleep, I followed Mark's advice and bought a double-bed blow up.  It fits perfectly on top, and with the additional foam pad, my own bedding and pillows, I am a happy camper.  The first night I slept on it, I made "sheet angels" because I was so happy.  I went on to have wonderful dreams, like one where Mark and I were hanging out with friends at an outdoor concert with John Denver, who took my request to play, "Rocky Mountain High".  It was a great party!  Mark can actually come hang out with me on my bed, and it's funny because just a little while ago he was getting so sleepy but said he didn't want to fall asleep because he would miss my company.  I sang Aerosmith, "Don't wanna miss a thing" and he laughed.

     This has been a difficult week.  I haven't been returning phone calls to inquiring family and friends because I've gotten so depressed and overwhelmed lately.  I know I'll be OK.  I know that I don't have the choice not to press on.  I know lots of people are loving on us and praying for us, but it is so discouraging sometimes.  When the spiritual message that was brought to us today, was the exact same message that a friend had emailed me, I paid attention.  It was a beautiful reminder that the Savior loves us and has suffered all with us and for us.  He is the answer to our heartache.  All will be made for our good in due time. 

     I look forward to returning home tomorrow evening.  I look forward to the hugs and kisses of our children.  I look forward to traveling through the canyons to get another peek of color before the leaves drop.  I love this time of the year.  I am so thankful for Ariel and my mom for watching over our children this week.  I hear they have had many adventures and are happy. 

Wow! What a weekend!

     On Friday after work and school, I took my girls and thier friends to the Thomas Edison Fall Festival.  It is a lot of fun, but after a short while, it's overstimulating.  A zillion grade-school aged children with little booth games, bounce houses, face painting, pizza and way too much sugar = noise overload!  The kids had a blast.  Here are Ava, Amari and I on the hayride.

      Mark (my brother) and Dawn drove up from Bountiful for the weekend, and met at our place.  We left the kids and my Mark at home, and met up with friends.  This weekend is mine and Dawn's 25th high school reunion.  There were four different events, and the "Starter Party" was held at the patio at the Owl.  We had a great time!

      On Saturday morning, we met at Mountain Crest High School for a Fun Run Fundraiser (FOR OUR FAMILY!!!!)  There were 42 runners total, and over a dozen buisness sponsors.  We enjoyed talking with and hugging so many family and friends who came out to support us.  Here are Mark and I just before the race began.

      There was such an outpouring of love there.  Generous people, giving time, gifts, support, joy and love!!!  There was one dog in the race, several kids on bikes, and even a motorcycle!  It was a GREAT event, THANK YOU to everyone involved!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

      After the Fun Run, there was a class picnic at Hyrum Park.  We brought spouses, kids and lunch.  We enjoyed telling stories of old times, and sharing updates.  A lot of classmates came from out-of-state, even out-of-country to be here for this weekend.   How cool is that?

      Dinner was held at Castle Manor in Hyde Park.  There must've been around 50 of us there (I really don't know), it would've been tricky to get a group shot.  Here are a couple of the pics I took.  We had a wonderful night!!!  Some people avoid high school reunions for various reasons, I wish everyone would come though.  We have an incredible class!  Some are friends since grade school, some are "new" old friends.  Others have told me that my class is special. 

     My high school class rallied around my family in our time of need, and in a BIG way!  I was not a popular kid in high school.  I was the funky, Duran Duran loving, violin playing, bangs in my eyes, wear black too often, silly girl.  I didn't go to any high school dances except some of the Girl's Choice ones. Even now, I'm surprised when some classmates know my name.   I've made more friendships since high school, than I did then.  I feel so blessed to have this connection now.  There is something healing about making peace with the past, and embracing the present.  Let's face it, high school is a time when we realize we are all infinitely amazing, and infinitely stupid as well, and we try and make it all work out.  We're all survivors really, that is HARD to accept.  MC '87 is an incredible class and I'm lucky to be a member of it!

     On Sunday, we gathered both Martineau families (my brother's and my Dad's), and the Oswalds for a cake and ice cream party for our little Amari Shinehah who turned four.  How is this possible that my youngest is four?  She is a little princess, and has the sweetest disposition.  She misses me when I leave for work or go to the Huntsman.  She is still small enough to cuddle with me to read stories at bedtime and fall asleep in my arms.  I love it.  Happy Birthday to Ari!!!!

Be Still

     This is the "good week", or the "happy week" before we face the demons again next Wednesday.   Mark feels a little better, the kids thier silly selves, and I can breathe a little deeper.  Funny thing is I still can tear up at a moment's notice.  So much happy/sad energy around me all of the time.

     In preparation for the Fun Run this Saturday, I've been talking with my friends about how it's going.  I'm amazed at what I am hearing.  The support for us is overwhelming.  Love is truly a powerful force.  The love energy that is showering over us is tangible.  Saying "Thank you" is not enough.   I need you to know that your love, prayers, service, donations, positive thoughts, all of it, is healing us.  People ask me how we can do this, well, that is one of the BIG reasons.  I've never felt this much of this healing love energy before in my life.  What a precious gift!

     In tomorrow's newspaper (Herald Journal) there will be an article about our family.  Our home health nurse, Melisa, was here drawing blood for labs and they snapped a picture of  her, Mark and myself.  While I hate my picture, because I've never weighed this much in my life (a post for another time about how stress is my biggest enemy, and that is one area I'm completely failing in my life right now), I'm grateful for the opportunity to tell our story in that medium.  Our reporter began with general questions, but once she got Mark into a rhythm, it turned into something I don't think she was expecting.  At one point our nurse was in tears telling the reporter how amazing we are, and how she sees families in a similar situation who are not able to see any good in it.  All of us were in tears at one point.  It was a beautiful interview, a testimony of Mark's faith, lack of fear, and determination to fulfill his earthly mission in any way or time frame that the Lord asks.  I don't know how the reporter will put this all together, but I know it was important to Mark and I to express our gratitude, to acknowledge the support and love of so many, to be hopeful about our time together, however long it may be.

     Hope is a fleeting thing.  We don't get it once and then it's ours.  We have to discover it again and again.  I love the scripture, "Be still and know that I am God."  It is particularly special to me at this trial in our lives.  It doesn't say to just "hope" or "believe" it says to "know" which is a lasting thing.  I know.  Mark knows.  So, we do our best, and then be still.  And even that makes me tear up!

This time last year

     We're in a better place this week.  Mark is feeling a bit better, he is working a bit, and spending quality time with all of us.  Each of us is feeling comfort and are better able to focus on positive parts of life.  At least for one more week, anyway.

      My mom was here this morning.  She took Amari to dance class and let me get some work done.  We were talking about this time last year.  It was so exciting to be a part of my sister's wedding.  Those memories are priceless!  It was interesting timing because Mark had just returned from a CT evaluation, and we discovered just how fast his tumors were growing.  We had just met our chemo team for the first time, and set out a course of action for the next few months.  Dr. Gouw has told me since, that after our first meeting he did not think Mark would live to see the next summer.  We didn't want to spread this bad news at the time of Jason & Renee's wedding, but many family and friends knew.  They hugged us tighter, tears in thier eyes, and then danced the night away to the contagiously upbeat music of the "Clumsy Lovers".  (I've been thinking about you alot Renee, especially after Kay & Eric's wedding)

     After their wedding day, a small group of us traveled to Jason's hometown of Hope, BC, Canada for a week stay and for a reception there.  We rafted the mighty Fraser River, toured Hells Gate, picked huge, wild blackberries,  visited Othello tunnels, saw the fish swimming upstream, enjoyed fresh salmon, shopped for maple leaf earrings, ate peroghies at the "Elvis rocks the canyon" cafe, toured the woodcarvings and Rambo movie sets in Hope, ate nanaimo bars (so delicious!), and were surrounded each day with the music of Jason's banjo, Helmut's guitar and many of and thier friends.  We had a good time being out-and-aboat, eh?

Driving, Dating and Daring!

Happy 16th Birthday to my son Andrew!

Landon and Andrew

     Family Home Evening was spent having a picnic on our trampoline with Subway sandwiches and some yummy wedding cake that my friend Kay brought to us.  We enjoyed the sunset and happy chatter with all of the kids plus Andrew's friend Landon.  As part of the adventure of the day, Landon taught Andrew how to drive clutch.  They had a great time.
     As our only son, Andrew brings enough boy energy into our lives to make up for four sisters.  It's hard to imagine the strong, confident teen in front of me is the same vulnerable child we met in a shelter home.  The path to bring him into our home permanently was very long and challenging.  He is worth it!  We have the added bonus of staying connected to his birthfamily (we love you guys!!)  Here is a picture of the little guy we brought home, hoping we would be able to keep him forever.

     I love this kid!!!  He used to wear a Batman costume, including cape, mask and boots, everywhere we went.  He looked so cool. Our first Halloween together, Mark dressed as his partner Robin.  He also used to swear like a sailor, something I didn't correct right away as we were still building a relationship.  He didn't do it when he was angry, but when he was excited.  We used to draw attention at the store, when my 4 year old would drop the f-bomb and I didn't stop him, just stated, "You're right Andrew, that is the Batman movie you were looking for!"  Oh, he is going to kill me for sharing this isn't he?  It really is impressive how he has come out of his shell, boldly learns about life, and accepts challenges. 

Yep, I love this kid!

     Mark has a bit of energy, he worked in the office for a few hours then took the kids shopping.  He will rest this evening and home health nurse will be here any minute to take blood samples. 

     I've been very productive today.  I'm getting all that I can done, while Mark doesn't need me as often.  We head back to the Huntsman next Wednesday already.  Yuck!

A picture-taking day!

     Today was filled with happy moments.  I make plans, but I never expect to follow through, I only hope.  Such is my current schedule with our situation.  Today, Mark felt well enough for me to leave him for awhile.  He rested all day, except to watch a football game with our neighbor on a big screen in our neighbor's back yard.  I was able to get out.

     I  enjoyed two big events.  First, I took my three youngest and  met with our friends at the Brigham City temple open house to take a tour before it is dedicated next week.  It was positively gorgeous.  I've been inside many temples, and I'm still surprised and impressed by the beauty and peace that exists there.  I showed my daughters the mirrors, in the sealing room, that reflect forever.  We savored the celestial room, where I whispered to my daughters, "This room, to me, always feels like what being in heaven must feel like."  Ava was completely taken by the chandaliers, well, that and all the birds she found on the temple grounds.  Amari loved collecting pennies out of the fountain in front (oops), and Ammoriah loved all of it.  It was really enjoyable to share with them.

The Brigham City Temple

Me and Karen at the temple

Amari, Ava, me and Ammoriah

 

Ammoriah and Janessa at the fountain





After the open house, we met up with our friends at a park nearby.  We enjoyed a good visit, lunch, and the little kids fishing.  Ava caught a catfish!  She wanted to bring it home, but I said no.  I'm such a killjoy. 

The second big event today is something I've been anticipating for a long time.  Who doesn't love a wedding?  I see it as an opportunity to bask in the love, hope and goodness of two souls commiting to one another.  My sweet friend Kay has been in my life since kindergarten.  We have precious memories as kids and teens.  When we were 19 we moved to Salt Lake together and had a grand adventure.  It was a difficult and interesting time in our lives.  We've stayed in touch over the years, and been there in many milestones in eachother's lives.  I love Kay.  She and Eric are wonderful together.  Today was a very special day.

Husband and Wife: Eric & Kay Gierloff

      You know how hugs can make everything better for a moment?  Well, I got lots of hugs today, from so many dear friends.  Great medicine!  We had a great time tearing up at the ceremony, and goofing off afterwards.

                                                    Beck, Kris and I are Charlies Angels.

                             Here we are with my daughter Aubrielle and our friend Ang,
                                         discussing our childhood crush on Shawn Cassidy.

                                                   Tender moment with Eric and Kay.

After dancing to "Margaritaville" and "Sweet Home Alabama" we said our goodbyes.  This is Beck, me, Kay, and our friend John who catered the event.  The meal was incredible!  The day was perfect.

I can do hard things

     It has been 10 days since the beginning of this round of chemo.  None of these days has been good, and some have been down right crappy.  Home health sent the nurses in several times to check Mark's vitals, take blood and supervise the IV fluids.  I learned to play nurse and run saline through his line, change his fluid bags, and communicate with those nurses and Huntsman.  I'm tired and sad.

        Mark finally stopped vomitting yesterday.  He has been dehydrated for several days, but the IV fluids and new meds are helping.  His blood cell counts and potassium levels are low.  Mark has finally been able to eat and drink, and slept well last night, although he continues to have vivid, interesting dreams, some enjoyable and some frightening. 

     Today was the first time Mark had any amount of energy.  He showered, dressed and went to the office, using his crutches.  Pretty amazing. He was exhausted after 3 hours in the office, and has not gotten out of bed since.  He is happier today. 

     In the past month I've slowed down my work load.   I only have 2-3 Life Coaching sessions per day, and I teach a Basic Life Skills class on Thursday night..  I've had to be selective with my energy.  I want to serve Mark, our children and my clients with good energy, and I have precious little of that lately.  Mark has been grooming me to run our business, and this week I've taken on more of that responsibility.  I enjoy the work, but I have to balance the demands of Mark's health issues,  five children's schedules, running the home, and my sanity.  Like I said, I'm tired and sad.

      I remembered this quote; "I can do hard things" and I know that with the help of so many, and by trusting in the Lord, I CAN do hard things.  We all can.  That doesn't mean I do hard things perfectly, or well, but I can do them sufficiently and be blessed by my willingness to do so.  Honestly, this just doesn't get any easier, so I better know that I can do hard things!

Live da Life!

      There are so many people reaching out to our family that it is truly incredible!  Family, friends, and even strangers have been serving us in countless ways.  This is one of those BIG ways;

     A few months ago my friend Tammy called to ask if she could do something for our family.  It started as an idea, and only a few hours it ballooned into something quite big!  A fundraiser for our family, everyone is invited.  It will be a Fun Run/Auction held next Saturday.  Tammy reached out to our high school classmates who are preparing for a reunion next weekend.  Many of them agreed to help host the event.  The amount of support was overwhelming.  Advertising, nurses stations, getting sponsors, and all of the details that go into hosting a huge event like this; every single bit of it is donated.  WOW!   '

      Here is one of the banners that is currently posted near Spring Creek Middle School in Providence, UT.  I'll include a link to the event at the end of this post. 
  
     Here is Amari and Ava at our school where we found another sign. :)  Sorry I tried four times to upright this photo without success, owell.


"Live da Life" is a quote that we discovered on the island of St. Kitts.   We were there in March 2010, not long after Mark was first diagnosed with cancer.  We were on a cruise with some dear friends.  We sat at the beach and enjoyed one another's company, drinking in the sights, sounds and smells of the caribbean.  We talked and laughed at the Reggae Beach Bar.  We noticed a huge sign that read, "Live da Life!"  and we agreed that in that moment we could feel it.  Life is never perfect, but moments in life are!  Mark, myself and our friend Beck swam in the water.  Beck and I climbed up onto a floating picnic table.

Beck and I in St. Kitts on the floating picnic table.

Beck is an NYC artist and she is the one who created the name and logo for the Fun Run event.  We love it!

Here is a picture of Mark and I on that beautiful day.  We try to remember to find magical moments in our life and by doing so we are 'living da life!'  Those magical moments are usually capturing quality time with those we love, or quiet moments of reflection and counting our blessings.  Life is good!
A huge THANK YOU for all who are involved in anyway for the event. We love and appreciate each and every one of you.  We'll be living da life regardless of what is to come.   Here is a link for more information;

http://www.livedagreatlife.com/Home_Page.html

Unpredictable

     Today has not been a good day.  Mark is so weak he cannot sit up on his own.  He is still sick, really sick.  He cannot eat and can only sip a little.  We now have a home health nurse who was just approved today.  We spoke together for an hour before she went to meet Mark and take his vitals.  Unfortunately he was so sick at that time that all he could do was shake his head, 'no'.   She plans to be here tomorrow anyway, so she stated she would do vitals then.  She will have to take blood for lab work on certain days of the chemo cycle.  Ifosfomide typically creates a low platelet count.  We'll have to watch and see if Mark will need an infusion.  We've never been faced with this situation before.

     Once our nurse left, she immediately correlated with our team at the Huntsman.  I received a call from them letting me know that they are worried about Mark being hydrated, and his potassium levels.  The home health nurse will return tonight, asap, and put in a peripheral IV, run fluids and some anti-nausea meds that should help him do better. 

     I'm the type of person who likes to organize and control as many elements in my life as I can.  Cancer kicks my butt in this area.  It takes away my sense of control over my time, energy, plans, emotions, and comfort.  Cancer doesn't care that we've got five children that need our time and attention.  Cancer doesn't care how much time, money and energy we invest in trying to minimize it's damage.  Cancer sucks.

HOME after 6 days in hospital

     It was so good to come home last evening after 6 days at the Huntsman.  Thanks to; my mom, dad and stepmom, and my assistant, a dinner from Howard & Tina Jensen, and a ward service project to mow, trim and weed our yard,  our children were well cared for, and the home looked amazing!  WOW!

      I spoke with the children while we were away and enjoyed catching up with them.  Amari got on the phone and said, "Mom???? (yes,) I WANT YOU!!!!"   She wasn't crying or anything, it was just the sweetest comment by such a mommy's girl.  She went on to tell me all about her adventures with Grandma.  Being reunited with everyone was sweet.  We told eachother all of the goings on since we'd been apart. 

     The short update on Mark is that he is extemely weak, and still very sick.  He isn't working, which is always a huge sign because sometimes you cannot stop him.  He can be doing phone calls, and typing evaluations non-stop on his good days.  I worry that there will be few relatively good days before we have to check in for the next round of chemo on September 26th.  We have two of our children's birthdays coming up.  We'll try and do the fun stuff when Mark feels OK. 

     It is good to be home.  It is good to have the worst part of ROUND 15 behind us. 

I Honestly Love You Guys!

      Mark has been resting a lot these past couple of days, and so I snuck away to have a girl's night out.  This was last minute, but turned out great!  I met up with Karen, Kristie, Kathy & Mel and we talked and laughed and healed eachother up.  A lot of big issues in our lives right now, and quality time with friends is such a great medicine.

      We went to the ampitheater in Layton, and sat just outside in the free section, to watch Olivia Newton John!  We watched her walk by on her way into the building.  Kathy's daughter Natalie said, "I hope to look that good, and still wear kitten heels at her age."  I couldn't agree more!
     She did sing my favorite Olivia song, "Hopelessly Devoted to you"  who doesn't sing that song into a hairbrush imagining you are Sandy from the movie Grease, singing to yourself, "my head is saying Fool forget him, my heart is saying, Don't let go.  Hold onto the end, that's what I intend to do. I'm hopelessly devoted to you."  (sigh)
     We sang outloud to all of her songs, the old country ones from the mid-70s, the amazing songs from Grease and Xanadu, and the early-80s-Physical-era.  Surprising how many songs we remembered the words to.  I really do wish we had hair brushes to sing into, or perhaps a curling iron.  Anyway, we  danced and clapped along, even though most of the crowd, inside and outside of the ampitheater were dead beats.  Not us!!  We had a blast!!

      You know how Mark calls me "triple A" which stands for "always an adventure"?  Well, Karen is my partner in crime, and after trying to work with the security guards and have them take a picture of Olivia for us (a big fat "NO!!!") we plotted ways to accomplish this task.  Opportunity knocked when some old man started walking in unappologetically SO, I snuck in behind him.  I did.  And while security stopped him and asked to see his ticket, I tried to grab a picture of Olivia (I couldn't get a good one, sorry), then I quickly snuck into a crowd of women who were leaving and met up with my friends who were laughing at my boldness. I told them, "I came here to see Olivia Newton John in concert, so that's what I did!"

     A man sitting near us told us we'd see her walk by again after the show.  We waited and met members of her band.  Once she came by, just  a few feet in front of us, this is the best shot I got.  I would not have a career as a paparazzo.  She looks amazing, sounds amazing, and this wasn't bad for a last-minute adventure with my wonderful friends. Yay!
   
                                  
     Well, it was a perfect night of girl-talk, sing-alongs, laughing, and solving the worlds problems together.  Unfortunately, we waited so long for Olivia to walk by us, that the parking lot was practically empty, which concerned us when we realized Karen's battery was dead.  Lucky for us, there were two couples talking near us and offered to help.  A gynormous truck gave us a jump.  We thanked them, and made them take our picture.

     So much of my time this week has been spent in worry, I cannot express how wonderful this night felt to me.  I love you guys, I honestly love you.

City of Angels

     Days 2 and 3 have been a little better.  Besides Mark's nausea, fatigue and everyday pain, he gets these terrible hiccups.  These are not the cute, mild ones that go away after a few minutes.  These are strong and last for a very long time.  He meditates through them. 

We got a huge surprise today when our friends Keith and Brenda came to visit!  I wasn't here when they were, but they had a wonderful visit with Mark and left us a thoughtful present; lotion, chocolate, slippers and Soduku book. Thank you! Mark had a wonderful talk with them about his conversion to the gospel.  Many tender moments were shared. We love you guys!!!!

Tonight is super-quiet in the hospital.  After watching the big football game on TV (Go Aggies!!) then we watched one of our all-time favorite movies, "City of Angels".  It had been awhile since we'd seen it, and the movie was better than we remembered.  We loved so many parts of the story.  Mark loved the main angel and the former angel contrasted as the whole person and the holy person.  Duality in life, everything is both perfect and flawed.  I loved the line, "you don't have to believe in something for it to be true." 

At the end of the movie the angel-friend asks, "If you knew this was going to happen, would you have become human?"  The answer; "I would rather have one breath of her hair, one kiss of her lips, one touch of her hand, than forever without it."

"I'd give up forever to touch you..."  this is the first line of the song "Iris" by the Goo Goo Dolls and has long been a song that reminds me of Mark.  Mark is passionate about; life, deepening relationships, having new experiences and gaining deeper understanding.  This is a beautiful song:

    
http://www.youtube.com/watch?v=JiXnswDyZAQ

    

The Pain Scale

     This is the pain management scale used to determine where you're at and what you might need.  According to this scale, I'm always at a 5, and lately I'm a full-blown 10 and I'm not the patient!! 

     Speaking of my own experience these past, almost 3 years, I've mostly done alright.  The difficult moments have been spread out, and I can find recovery time to get myself back to where I need to be.  That changed for me since the morning I learned our friend Trent passed away, two weeks ago.  It is like the dam broke, the one that was guarding me so well, and I'm hurting.  Things are very real for me. 

     I appreciate all the emotional support I've been given lately. I am trying to find balance again, healing, and peace, so that I can be as functional as possible and serve Mark and our children the best that I can.  Sitting here with Mark at the Huntsman helps and hinders this process. 

     OK, so what you really want to know is how Mark is doing.  In all seriousness, facial expressions aside, the pain scale for Mark has been a pain level 5 when he is active.  In just the past few weeks, I've heard him admit to the nurses that he is at a level 8 when he walks and he needs his pain meds, which he prefers to stay away from.  The nurses call him an 'under-reporter' so when he says he's an 8, they take that very seriously.  He doesn't complain.  He jokes around with all of the staff.  The snack-cart guy liked him so much that he gave him a ton of extra treats and a bunch of DVDs to borrow for our stay here.  Sweet.

     Day 1: Round 15 of chemo, round 1 of Ifosfomide.   There is a reason we haven't tried Ifosfomide before now.  We hear it is aweful.  It requires a very slow drip into the body with a lot of follow up labs and EKG tests.  This is why Mark had to check into the Huntsman for a 5 day stay.  We sat out on the patio in the afternoon before the PICC team arrived to insert a device to allow the infusion to enter his body in the central line.  This moment was precious to me because we shared another one of our deepest talks.  Mark's love and concern for me and our children is his highest priority in this process.  We have to consider each step carefully.  We are not just shuffling through.  We are always processing.

     Mark wasn't feeling well all day.  He was nauseated, tired, and in pain.  He had an episode of heart palpitations that the nurse was able to hear, but it stopped before the EKG machine was hooked up to him.  It lasted 25 minutes.  They are calling it a micralvalve prolapse, and are documenting it and asking Mark to let them know if it happens again.  I'm not sure how much I should worry about it, so I'll do some research and decide what to think. 
     I have to thank Holly and our nurse Katie for thier suggestions that I bring a foam pad and my own bedding for my couch-bed.  I slept so well.  Mark is feeling a little better this morning, and is working at his computer.   Four days to go...

Appologies

     I thought I could do this blogging thing.  I thought I could just focus on the positive and spin the negative into a positive because that is what I really hope to do.  I think I've painted a picture that has come back to hurt people close to me.

     It may look like I've got this handled.  I do not.  It may look like I'm happy.  Most of the time, I am not.  It may look like I have time to be the woman, the wife, the mother, the daughter, the sister, the friend, the church member, the neighbor, the Life Coach, the person that I used to be.  I can not anymore.  Not even close. I'm terrible at being there for anyone right now, including myself. 

     Many of you need to know that I'm sorry I'm not in your life as much as I would like to be. I am not remembering you as much as I should.   I'm sorry I forget things, am late to things, say no to things, I am a flake.

     I do have some help, but I am drowning in the life that I'm living right now.  The way I see things, it will only get worse before it gets better.  I had not considered that by asking people to be close to me, that I was asking them to get hurt in the storm around me.  I won't ask it of you anymore.  Don't be here if you don't want to get hurt.  I love you.

Lost in Love

     Mark and I love outdoor concerts.  We've been to several this year, and each one was magical.  Tonight we went on a double-date to see Air Supply with our best buds, Karen and Greg Gardner.  We always have ablast together!  Here we are getting ready to take off.

     After a nice dinner at Marie Calendars, we headed over to the small outdoor venue.  We had general admission tickets and even though we arrived right as the concert was starting, we had space on the grass right up to the front, right side of the stage.  The sun was setting, birds were flying overhead, and we were about to enjoy a ton of amazing love songs.

      Of course we sang along to every single hit.  They are a great stage show, and interacted with the crowd very well.  During, "Here I am, the one that you love, asking for another day, understand the one that you love, loves you in so many ways..." they walked right through the crowd.  Mark caught it on video as the lead singer, Russell, ( who must be a million years old by now, but still has the pipes to sing those songs!) came over to me and gave me a hug.  Funny thing, I was singing along and realized I had sung his song into his ear! ha ha, like anyone can sing his song better than him, especially me!  That was a fun moment!

      Here we are enjoying a perfect date night.  I can't pick a favorite song, but I think I have a favorite line, "the beating of my heart is a drum, and it's lost, and it's looking for a rhythm like you."  Yeh, that's a good one :)

     Sorry it's blurry, my camera doesn't like night pics.  You can see Russell and Graham on stage behind us while we slow dance to the final song of the night.  "Lost in love, and I don't know much.  I've been thinking aloud and fell out of touch, but I'm back on my feet.  Eager to be what you wanted." 

     Someone asked me if Mark and I would be enjoying life this much if it weren't for our situation.  To that I say, refer to our past 20 years together and you will find that this is our life.  We have been making magical memories all along.  And, even on days when we cuddle up in a blanket and watch an old movie together we ask ourselves, "What's so un-special about this moment?" 

In the company of friends

     This was a nice day.  It started out with the usual heavy-heart and low energy that seems to be my new normal.  Mark and I had a business correlation meeting while our kids did thier Saturday chores.  We all got a lot done. 

   I don't have much energy for all of the balls I'm juggling right now.  I get a lot accomplished, but I used to be capable of much more.  I need more time to heal myself up.  I find myself losing interest in  things lately.  I hear people around me getting excited about certain topics, freaking out about certain topics, topics that frankly don't mean much.  I say to myself, "let the little stuff go" and I'm realizing, that like the famous book title says, it really is mostly little stuff. 

    A part of my healing today was sneaking off with Mark to swim laps at the gym, and soak and stretch in the hot tub.  We were alone in the outdoor hot tub and it was raining.  It was wonderful. 

     Our good friends, the Oswald's threw together a dinner party at their home last minute.   More healing.  We gathered with additional friends, the Gardners, and the Keens.  Between us there are 19 children, but they weren't all there.  The teens hung out downstairs, the gradeschool kids ran around outside and the little girls went fishing in thier Koi pond (catch and release using a net).  That left us adults to enjoy an incredible dutch oven dinner together catching up, joking around, reminiscing, and dreaming up future plans.  Mark and I just love these families.  After quoting lines from all of our favorite comedies until we laughed so hard we couldn't breathe, we made our way home.

     Life always seems more manageable when you're in the company of friends.