Tuesday, April 24, 2018

Go Forward and Live Life!

This time last year my life had been completely turned upside down.  I'd started the day out planning on unpacking, organizing, and cleaning.  Late morning Neil came out dressed with shoes on when earlier he'd been wearing pajamas since he'd called in sick.  He sat down next to me and said "Okay, I think I'm ready.  Let's go."  I remember being confused about where we were going and completely shocked when he suggested going to the ER.  I knew he'd been hurting and not feeling well but he is not one for the ER.  Ever.  He doesn't even like to walk over there with me when it's work related stuff. 

We left that appointment with a referral to Oncology, biopsy appointments and a very ominous CT scan.  No one used the C word in the ER, but prior to being an ICU nurse I was a Med-Onc nurse and there just aren't a lot of things that grow on a pancreas.  The next week flew by and time seemed to stand still at the same time, but our life was never the same after that visit.  A diagnostic EUS with biopsy at LDS Hospital, PET scan and a port placement at DRMC and we were fortunate to be able to do everything else here in Cedar.  Chemo education with Cheryl, cleaning like crazy on chemo weeks and trying to guess what Neil's white count would do after chemo so that I could plan my work schedule around his chemo schedule and sick days.  Most of last year is a bit of a haze, not sure if I'm actually remembering things or not.  Worrying so much because until Neil was 2 treatments in he could barely eat anything except cheese sticks.  When his pain improved and his appetite came back then I started worrying about the next thing.  There is always something to worry about with cancer.

When one is handed a diagnosis of Stage 3 Pancreatic cancer there is an overwhelming feeling of how short life is going to be.  We didn't talk about long term plans, seeing Neil play with a friend's baby made me tear up thinking chances were he'd never get to be Papa.

Our new path wasn't one ever planned on, but it's leading us to wonderful places
The day we got the NED diagnosis felt disorienting again.  With everything in life there is always an element of what you will do next.  When you start a semester at school you have an idea of what classes you need next, what you will do after graduation, when you will return for graduate studies.  You plan next.

We had stopped planning next.  We planned to fight hard and bravely, which Neil did but Pancreatic Cancer doesn't just go away.  It's a fight that you fight every day of your life, and you are grateful for each and every day.

So what do you do when you thought you were dying but you don't?

We began to live differently, bigger, more intentionally.  Comfortable no longer feels comfortable or safe--it feels stagnant.  Neil is going back to school, we have a National Parks pass and we are using it as often as possible.  We aren't staying at home and binge watching tv, we are seeing things we've never seen before.  Picking up new hobbies and reviving old ones.  Trying hard to turn our weaknesses into strengths. 

Last year felt like a death sentence, this year feels like life.

Wednesday, December 27, 2017

Happy Holidays and what happened to 2017?!?!!

Most of this year has been a blur in one way or another.  Neil starts his last round of scheduled chemo tomorrow.  I hope and pray that it's the last for a long, long time but I also know every time his stomach aches or something feels different I'm going to jump to worst case scenario for a long time.  Two weeks after his last chemo he will be scanned again and then just lots of hopefully boring follow up.  Looking forward is easier than looking back.

This chemo cycle Neil has gotten Neulasta to help boost his white count and neutrophils so that there wasn't adding extra weeks in between rounds.  It's made the last few months very busy and full of a lot of sick days.  I feel less reliable and much less planned than I typically like.  Out two weeks there are 3-4 days I can count on him feeling good, sometimes a few more and sometimes one of those good days isn't so good.  For a while I alternated between making those days as full as is reasonable (even on good days, we don't get to do as much before he's done--so few spoons these days) and spending them just relaxing and doing nothing.  Fortunately and unfortunately those good days I usually work. It makes it so I can be home on more of the bad days but makes good days less fun.

Christmas season this year hasn't been very productive.  I've bought the ingredients to make cookies, bread, Grandma's popcorn and a few candies but never got around to making plates.  I think back on the shoulder's I've cried on and the arms that have lifted us up and I wanted to do something meaningful to show my appreciation but fell asleep on the couch with it being nothing more than a wish.  I was determined to make just one trip, Neil and I without any kids, and go see the lights on temple square.  Instead we stopped by St George temple tonight.  We've tried to #lighttheworld but it's mostly been in small simple ways and without any kind of regularity.

There was a peace about this Christmas season though.  More joy in a string of lights, more tears at Christmas hymns, more childlike wonder at the first snow fall.  I will tuck away 2017 with gratitude for friends and family and welcome 2018 with open arms and enough fun plans to make up for this year.  Weddings, camping, National Parks, and hopefully a marked lack of hospitals.

Tuesday, December 19, 2017

What not to say and what to do instead {don't ask him how he's doing, just give him a hug}

I need to fully admit that this post is partially due to a friend going through very hard times and some of her thoughts.  After describing how taxing it is to have a child admitted to the hospital for an extended period of time, other kids at home (not the same town as the hospital), husband at home trying to juggle everything else and worry about Mom and kiddo in the hospital and everything that goes along with this scenario she said "don't ask him how he's doing...just give him a hug"

After reading her post I thought of all the things that very well meaning people have said or asked that haven't been helpful, what has helpful and how do I respond to people both as their nurse and also as their friend.  I have friends who always have a full plate and are always willing to give and serve--yet they say they aren't compassionate.  Friends who always say the right thing and listen at  the right time who say they never know how to respond.  I know I've said things that haven't been helpful and maybe even hurt when I didn't know what to say and I hadn't yet learned all of my Hard Things lessons and my perspective was limited.  I also want to point out that this is a personal list and I don't pretend to say it applies to everyone or even most others.

Don't tell me how to feel.  Feelings just come, whether you want them too or not.  Whether it's convenient or the timing is all wrong doesn't matter.  It's okay to be angry.  It's okay to be sad.  It's okay to be shocked.  It's okay to laugh during dark times.  It's okay to be numb to get through a day of things that have to be done even though you aren't certain why life around you still continues on.  Telling me to be happy and have a good attitude and be happy when I'm disappointed that our summer camping trip turned into me camping in the motor home in the parking lot at Intermountain Medical Center doesn't do me any good, it just invalidates me and closes down communication lines.  Instead? Listen. Listen with to understand more than the details of what is going on, listen to understand me better.  Listen, without talking, without judging, without checking your watch or phone.  Also, understand if I don't feel like sharing.  If I don't feel like sharing I definitely don't want to explain why it's hard to share right now.

Don't ask me to let you know if there is anything I need. This one I'm guilty of myself, but if I say it I mean it.  My problem is I don't always know what/where/how I can help.  I remember being little and Grandma making parkerhouse rolls for someone else.  I was disappointed they weren't all for me but I remember her explaining that one of her friends was really sick and had been in the hospital and she wanted to make rolls for her.  I didn't understand how rolls could fix someone who was sick.  When I was a teenager I knew if Mom was making enchilada casserole someone in the ward or neighborhood was sick, had a baby, had a death in the family, or various other but undefined Hard Thing.  I wasn't taught how to give and serve, I was shown but it wasn't until years later that I understood.  In the midst of Hard Things and offers to help if I needed anything I had friends see where I was lacking and fill the gap.  They didn't ask, they just did.  Another friend brought by a note card with a hand written note and a bowl of rolls just because she was thinking of me and wanted to me to know it.  I had a loaf of bread on the counter and I didn't need rolls but I needed the love and friendship that they symbolized.  I still think of much I appreciated the note, the rolls, and mostly the friendship every time I eat a homemade butter knot.  I think seeing needs and knowing how to fill them is a talent, hopefully one I can continue to improve on. 

Don't fill time with talking.  Mindless "how are you?" "are you ready for Christmas?" etc.  I value sitting in silence with someone nearly as much as I value having someone to listen to me.  I enjoy stories and getting to know people better, I love it when a stranger shares something with me that gives me a new perspective or helps me understand a different background.  I also treasure sitting in silence just enjoying someone's company.  A car ride listening to music or talk I've downloaded.  Taking a few minutes in silence to appreciate a beautiful sunset or skyscape.  If a song has touched my heart and you were listening with me, you are now part of that experience forever.

Care about people, not their circumstances.  Love people for their differences not inspite of them.  Value those around you.  Lift up others when you are able.  Let your light so shine.


p.s. cancer still sucks.

Sunday, December 3, 2017

How are you doing?

It's amazing the difference a sincere pause makes.  Last week I was asked "how are you doing?" followed by a moment of silence.  I mumbled something about being fine and doing okay but as I've thought back I truly appreciate the sincerity and care behind the question.   As I laid in bed trying unsuccessfully to sleep I realized that I couldn't answer because I didn't know.  I've been going through the motions and things have been getting done, but none of it with purpose.  I'm not sleeping well, it seems like Neil sleeps better when I'm watching him and he needs his sleep. 

It feels a little like I'm walking through a haunted house, down a long hallway with spooky music where nothing is happening except you know that out of one of those doors something is going to jump out at you.  It's not the monsters that jump out that are the scariest, it's the long hallway with nothing but anticipation.  I've even put things that I am doing for me (or things that need to get done but that I enjoy and count as me time) as task status and I'm doing them without purpose which leads me to gaining nothing from the activities but a check mark.

I keep waiting for the current thing to be finished so that things can calm down and return to normal.  It started in elementary school when I wanted to be in high school.  Then I wanted to graduate and go away to college.  What about after I'm married?  When I have babies?  When the babies aren't babies?  When I go back to school?  When I get divorced?  I could go on, but I think you get the idea.  I explain it to the youth like in school.  You can't wait for the semester to finish and have finals behind you.  Then on Monday a new semester starts with new assignments, expectations and tasks.  As soon as one thing is finished another most certainly comes along.  I'm not going to push my peace back until trials and stress aren't around anymore, I'm going to find my peace now.  Purposefully.

I'm going to find time each Sunday to answer "how are you doing?" to myself with complete honesty--I refuse to get lost among the anxiety and stress. 

We finished-ish the Christmas tree today too, a box of special ornaments are MIA but I will venture into the garage tomorrow to look for them and our non-tree decorations.  Neil doesn't feel normal yet, but he felt up to helping us hang the balls and hunt for his Raiders ornament for a short time before bed.  I'm going to turn out all the lights and just be for a few minutes before I head to bed.

Sunday, November 26, 2017

Holiday Season {30 Days of Gratitude}

Thanksgiving prep took my nice blogging streak away, but I love the holidays.  Turkey, ham, family, stuffing, PIE, Christmas music, beautiful lights, traditions, baking, more pie and more ham. The holiday spirit has hit me early this year, typically stress and chaos hides it until the last minute but this year it started with Thanksgiving prep.  

I understand from a been there, done that perspective that the holidays can be hard and seemingly more so for those who have smaller support systems.  Please know that my heart goes out to you and if you need a shoulder to cry on or a plate of cookies I'm here.

Monday, November 20, 2017

Excess {30 Days of Gratitude}

***I will have to add the picture later, I forgot that blogger doesn’t like phone images***

I can be very tight budgeted when it comes to grocery shopping, mostly by need at various times. As I went grocery shopping today for Thanksgiving I am grateful that occasionally we are in a position to have excess.  I love Thanksgiving and this year I’m finding myself more in a holiday mood and hoping to continue an excess of traditions (I nearly didn’t have ham and turkey this year, until I realized how important it was to others)

Sunday, November 19, 2017

Sunsets {30 Days of Gratitude}

Sunset is my favorite time of day, often on crazy hectic days it's the only time I remember to stop, breath, and appreciate my life.

Saturday, November 18, 2017

Faith {30 Days of Gratitude}

What does faith have to do with bread?  Why when I had all of the prep for Thanksgiving did I spend today making sourdough?  See what the boules up above turned into?  They smell better than they look. (both are out of the oven now)

Last week I promised my primary kids bread like pioneers made so I woke Sheldon (my sourdough start) up and spent today in a kitchen covered with flour and watching for flour, water, and salt to work it's magic.  A few years ago for girls camp I starting thinking about the analogy of sour dough bread being like faith.  There are several ways to get your start, sometimes they are borrowed from other people, started on the kitchen window sill with flour and water and careful feeding, ordered off of the internet, "cheater" starter with potato water and yeast.  None of them are wrong, but just like faith it starts in many different ways.  Soul searching alone, born in traditions our parents teach, etc. but eventually faith and sour dough have to grow on their own and not rely on others.  The analogy goes on, but I have a disaster of a kitchen to clean up and it's getting late.

Is anyone interested in me sharing my sour dough technique once Thanksgiving has passed?  Either traditional sour dough boules or bread without any of the sour dough tang that simply uses sour dough starts to leaven the bread.

Friday, November 17, 2017

Books {30 Days of Gratitude}

I love books, book stores, and libraries.  The feel of turning pages and the smell of an old book is comforting to me like a warm blanket.  I can't think of anything that you can't learn from books, whether it's Facebook for Dummies (not kidding, we saw it) or being transported to a magical world full of muggles, flying cars, and good friends it's possible with books.  Go pick up an old favorite of whatever genre you like best and escape the chaos for a while.

Thursday, November 16, 2017

Purple {30 Days of Gratitude}

Sorry this is getting posted late, I'm working on that tricky thing called life balance and I promised myself that I would get some chores done before I hopped online for writing or playing with pictures.  Good news is my tile, stove, and sink are all shiny clean.

Today I can't be grateful for anything if I'm not first grateful for purple.  Earlier this week I had a last minute idea to have friends, family, and whoever else wear purple for Neil's chemo today.  I didn't realize at the time that today was National Pancreatic Cancer day (I did know November is awareness month)  I made a post, made a few shirts for us and hoped for the best.  Neil said it best when he was looking at my Facebook page and said "so much purple"  It's a sea of color showing people who are pulling for us and we are definitely feeling very loved today.  Thanks for your support.

Wednesday, November 15, 2017

Love {30 Days of Gratitude}

Love comes in many forms, but when it comes from someone who makes you feel complete, safe, and whole your entire world changes.  I'd heard from many people how much they liked Neil because of how happy I was.  I guess it mostly made sense, he does make me happy and completely content in ways that I had only heard about and didn't really believe existed.  It's one thing to feel it yourself, it is even better to see it in someone you love and care about.

Tuesday, November 14, 2017

Family {30 Days of Gratitude}

Photo Credit Jenelle Lacy 

I love this tribe of mine.  Ups, downs and sometimes it feels like we're in a snow globe that has been shaken up but I wouldn't trade them for anything.  I don't have a picture of extended family so you'll have to imagine them in there too.

Monday, November 13, 2017

Flowers {30 Days of Gratitude}

I know there aren't many flowers there right now, but doing 30 days in November makes it hard to get pretty flower pictures in my yard.  I prefer my flowers growing in the ground instead of a vase, at least most of the time.  This fall weather has been amazing and I spent today out in the flower beds while Neil raked the lawn.  I had salvia, lavendar, beard tongue, and flax that did well this year that I am hoping will be back next year.  My corn flower did okay, so she might be back too but it's her first year and this fall it was a struggle.

When I'm in the garden with dirt in my fingernails my mind wanders letting me sort though problems and stresses.  The benefit of my garden therapy time is beautiful flowers that thrive in the sunshine.  It will be a long winter before I see the benefit of today's work but I know it's coming.  Along the back I have irises planted from Harmony, mini daffodils in a few clumps, a row of crocus along the front (2 different bags and I didn't mix them up so I probably won't love them), chionodoxa in 2 clumps in the front bed and 2 more along the fence line, regular daffodils at the end of the fence, and some hyacinth.  I will have to come up with summer/fall plants but for now I should be good through spring to early summer.