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.

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.

~Heather

p.s. cancer still sucks.

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.

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.

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)

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.

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.

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.

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.

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.

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.

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.  

Sunday Drives {30 Days of Gratitude}

Sunday drives are never about where you are going, they are about the ride.  Google maps don't get involved because we don't care about the fastest or most direct route and time rarely matters (sometimes we have someone stopping by and then it matters)  Stopping to appreciate the landscape, wildlife, or perhaps the cows is of greater importance than the route we take.  It's easy to apply it to life as well when everything gets hurried, audited, caught up in numbers and statistics -- that's not what matters.  Did you stop to see the calf?  To talk to people? Did you realize your neighbor was having a rough day and needed a smile?  Did you hold the door open for a stranger pushing a stroller?  I believe when all is said and done it's not where you end up but things you did along the way that matter most.

Baking {30 Days of Gratitude}

I know that this could fit in either "hobbies" or "good food" but baking can almost be therapeutic for me.  Kneading bread dough, shaping, creaming butter and sugar.  It doesn't hurt that the end result is delicious.

This pie was a test run for Thanksgiving and the 'birthday cake' for my Mother-in-law.  My new pie plates are bigger than my old ones so I needed extra dough and extra filling so this ended up with a crumb topping and a shallow pie.

It wasn't necessarily the prettiest pie and Mary Berry would have been appalled at the bottom of my crust, but I have a few weeks to keep going.

My Planner {30 Days of Gratitude}

If I don't write it down in my planner there is a decent chance it may or may not ever get done.  I prefer a paper planner to a phone version by 100.  There is something that concretes my week by sitting down on Sunday with pens, washi tape, stickers, stamps and looking at what needs to be done and when that makes it seem more doable.  I've also been able to look back on dates when filling out paperwork for Neil, not to mention actually making it to everywhere we needed to that first week of chaos and fog.

Today I had made some fun Veteran's Day plans when I opened up my planner and re-remembered that I had a medical shift at the temple today.  I was disappointed in having to cancel my plans, but by the time I came home I realized that I was where I needed to be.

Hobbies {30 Days of Gratitude}

I'm grateful for hobbies.  Something enjoyable to ease the load of must do's with a get to do that hopefully frees our mind from to do lists, meetings, bills and worries of every day.  Unfortunately they are frequently the first thing to get lost when stress increases or time gets short when they are crucial to keeping life balanced.  

Neil gave Charlet and I lessons today, apparently it's a rough transition from a life of softball to golf clubs.  Lindsey does it so hopefully I catch on soon.  I'm hoping that in trade he learns to enjoy photography as much as I do.  Hobbies are more fun with good friends at your side.

Friends {30 Days of Gratitude}

I realize I don't have many pictures of me with my friends, and I haven't had time today to sort through old high school pictures for the times I brought my camera on debate trips or pictures from the few events I do have pictures of me with friends.  Many of my friends aren't local to me anymore and as I've said for years, they live in my phone now.  My friends that live in my phone aren't any less real to me than those I see around town or go walking with, they just live farther away on a map.

My friends have helped me through so many hard times and celebrated the good times with me that it's hard for me to find the words to describe why and how of my gratitude but that doesn't make it any less real or tangible.  Instead of fumbling over those thoughts I'm simply going to say thank you for being in my life.

The two friends up above might not realize it quite yet, but they're quickly becoming best friends and it makes me smile to watch.  I fully expect moans of protest when they see this, but it has to be said.

Right to Vote {30 Days of Gratitude}

I'm grateful for both the right to vote and for those who have fought for the right for me to vote.  Today Charlet and I went to vote (I filled out my mail in ballot but I love to get an "I voted" sticker) and I will let Charlet share her experience at the polls.  Today's election didn't have any big things outside of our little community but the people I voted for today I run into them at the grocery store, school events, or community plays.  I can talk to them personally if I wish.  

Voting isn't something that should be done every 4 years, but every fall.  I hope you got out today and voted too.

Autumn {30 Days of Gratitude}

Autumn is the most magical time of the year.  I know Christmas thinks it's the big deal but it's wrong.  Autumn has crunchy leaves, cool nights, football, promise of long scorching summer days coming to an end.  Fires in the the fireplace, hot cocoa, scary movies with thick blankets and beautiful sunsets across the sky. There is something in every season I love, but most of all I love autumn.

Me Time {30 Days of Gratitude}

Specifically, I am grateful for time for me and for times that I successfully make time for me.  It is very easy to get caught up in life and do all of the "have to" things and when I put myself at the bottom of the "eh, if there is time maybe I will think about it" list I never get there.  As in, never.  I've found that more "have to" things I have the more important it is that I take care of me too.  This summer when I'd been neglecting me I started breathing each time my watch told me to, then when that became more of a habit if I had a few minutes to spare I'd take some of them to do some mindfulness exercises.

The rest of what I do for me is shooting.  Driving home from work today I had a long loud ugh escape my mouth.  I want my 30 days to be stress relieving, not adding to the stress and today it felt very much like another task to check off instead of something to give me a few moments of time.  It's hard in winter, by the time I get home from work it's dark outside and shooting in low light with a kit lens is difficult.  I have a few ideas I'm working on for some posts and they are taking more work than others so on a long work day right after the time change with no pictures banked to rely on I just didn't want to do it.  A block later I realized that days like today are exactly when I need to take time for myself, to write, think, shoot, and focus on anything but the list of things I haven't done yet.  I'm grateful for the things I do to take care of me and the difference a few moments makes in my life.

Night time {30 Days of Gratitude}

A few nights ago I took a few moon pictures practicing for tonight with the full moon, but tonight the moon is hiding behind clouds so now you get my almost full moon practice shots.

With some notable discussions, night time allows for a reset and reflection.  Richard G Scott talks about how valuable the first morning moments are for reflection and insight.  First morning moments aren't possible without night.  The world quiets and stills for a short time. On hard days I get through knowing that night time is coming, giving a break to my body and soul.

Those first nights after Neil's diagnosis and every other Hard Thing I've ever been through have been a long and exhausting.  Afraid to fall asleep because in the morning I'd have to go through the shock of realizing my reality again.  There are a few moments that continue to grow shorter and shorter until they are gone between sleeping and awake before I'd awaken to my reality and my world would come crashing down again. Night still allowed me moments of sleep and a break from all the phone calls and tasks.

Good Food {30 Days of Gratitude}

I know it seems simple, but I really enjoy good food.  Baking, cooking, sous vide'ing, grilling, eating, pretty much all of it!  Great British Bake Off is one of my favorite shows and tonight I tried a hot water pastry crust for homemade pot pies.  The filling was easy peasy and so was the crust, especially for a new recipe and a new method.  I wanted to try at deep dish pie in my springform pan, but there was no agreement on turkey or chicken so I made smaller ones (still a smidge too big for a single serving but that didn't stop me from continuing to eat)

I've never known extended hunger, where my next meal was coming from, or wanting a snack and worried if I ate some of the food in the house I wouldn't be able to get more.  Almost always people are welcome to eat with us because we have plenty and I realize how privileged I am to not know hunger and I am very grateful.

Pictures are nothing to be excited about, I popped up my flash because people were hungry and waiting for me to pull out the tripod was not going to happen!  I also have zero skill at plating food, but it tastes good and that's what matters -- right?

Modern Medicine {30 Days of Gratitude}

I’m frequently grateful for the conveniences that come with modern medicine. IV fluids when I’ve been dehydrated, antibiotics for bladder infections, inhalers when I get bronchitis. It allows me to take better care of my critically ill patients and also provides me with my livelihood.

This year more than other I’m grateful for the advances in medicine, for the chemotherapy that makes Neil so sick, for surgical technique advances and new pain control devices that lower the need for narcotics (that also slow recovery). I’m grateful to those who have gone before Neil leaving behind a grieving family that have provided medical scientists with the information needed to help Neil fight this battle.

Temples {30 Days of Gratitude}

I know the years that 30 days of gratitude were trendy people got tired of the posts.  I haven't seen one yet today, but I've been thinking, planning, writing, and shooting my 30 days for the past few weeks.  It has helped center me and given me a new perspective while evaluating what really matters the most.  If you are one of those who doesn't want to see 30 days posts you also may not want to be seeing my pancreatic cancer awareness posts that will be going on all month long.

Cedar City LDS Temple at sundown

Last Friday the Cedar City LDS temple opened for tours to the public before being dedicated in December.  I've been watching the temple the past few years feeling peace from the beginning while sitting across on the hill, sometimes seeing big changes and sometimes not.  There is nowhere else I have found to remind me of what I value most when life, work, and busyness clouds my priorities and makes it difficult to remember.

Cedar City LDS temple at night

It Won't Ever Be The Same

I have started multiple blog posts that I keep needing to polish up, but life keeps getting in the way.  I'm off for a few days so maybe there will be a lot coming in my next few days off but no promises.

burn scar from Brian Head fire, just below Yankee Meadows

Today we drove up to Yankee for the first time since the Brian Head fire.  Yesterday we went up the canyon, past Cedar Breaks and over to Panguitch lake then home and saw some of the burn scar there.  Today we walked through some of the burn scar just below Yankee.  Standing in the middle of the black and charred trees knowing what use to be there took my breath away. The wind through the trees brought the smell of fire out instead of a flurry of aspen leaves falling down.  I can't begin to count how many times I've heard "it will never be the same again"  I loved camping/fishing/Sunday afternoons at Yankee, and it's all ruined now and similar sentiments.  The fire was devastating to many, all with different coping mechanisms and ability to handle hard things. 

wildflowers growing in the burn scar

There are patches of green among all the char, footprints left by deer, and a chipmunk scampering through the rocks.  Aspen trees are growing again, grass and flowers popping back up as well as growth I couldn't even see.  Seeds that need the heat to sprout.  If we look at the fires in Yellowstone and how the area has recovered there is hope to be seen.  It won't ever be the same, but it will be better.  The forest has a life cycle, and often part of that life cycle involves fire or bark beetles killing trees.  The forest isn't ever the same, but it grows again.  Where the stream ran through the burn scar was where the most growth was seen.  Instead of patches of grass and wildflowers bright green spread out away from the water.

Everyone in life has things that feel devastating.  Everyone.  We all have different coping mechanisms and our ability to handle hard things all varies as much as the hard things themselves.  From private trials that feel like they have to be shouldered alone to public fights to things that are difficult to imagine like the shooting in Vegas, I've yet to meet anyone who doesn't have something they are fighting.  Something that changes their life forever.  Something which makes it so things will never be the same.  Devastating things and things that leave scars on our body or our soul.  Things might not ever be the same again, but growth is possible.  Strength to be gained in the middle of the trial, patience learned in the midst of frustration and tears.  Growth we don't even realize is possible inside of us, sprouting because of the heat. 

POD #they've all blended together

POD #0  was full of excitement and worry.  Finally getting things done.  We'd prayed, hoped, and wished that this is where we'd end up some day and we were finally here.  It had a surreal feeling, kind of like Christmas morning with a big dose of worry with all the excitement.  Lots of mental energy but not much else unless pacing in the waiting room and hallways counts as exercise.

Lots of family was here to see him out of surgery.

POD #1 brought a lot of relief.  Neil was doing great, but still sore and sleepy.  Lots of encouragement about getting up and walking.  Pointing out a few times how while getting up hurts it feels better after walking.  That night I stayed I stayed in the hospital and about 4 am Neil turned a corner.  Up and walking without all the assistance and walking around his room.

POD #2 Neil was a walking champion.  His goal was to walk 12 times and be up in the chair for 5 hours.  I don't know how much he walked, but we were outside by the fountain 3 times, multiple full laps around the floor, down to the gift shop to look for a golfing magazine. {why don't gift shops have many things for guys?  Jewelry, decorations, magazines, etc all geared toward women}  Mental stress and energy was down because at this point I'm convinced that Neil must be Superman.  We walked 7,000 steps.  A little low for a typical day for me, but crazy for someone who is recovering from surgery on his pancreas. It also felt like having a newborn baby after being frequently woke up during the night and I was physically tired.  I headed to the motor home to sleep at 6:30.  I slept amazing, but I think I'm behind on my sleeping bank still.

POD#3 Neil's hematocrit is low, but not low enough to transfuse.  He is still having a lot of output from his JP that is bloody so he got a dose of Lysteda to help him clot.  It is still easy for him to move but his energy is in the toilet.  Partially from the hct, partially from being up ad restless all night again. (I slept very well in the RV)  Being in the hospital is hard.  Routines are all changed around, I'd be grateful for a to do list with housework things on it and we aren't here because things are going well.  I know this is where we want to be and that it's pretty miraculous that we are here since pancreatic cancer doesn't really respond to chemotherapy, but I'm ready to be home.

Neil asked early on why I talk shop with people and I've decided because it's familiar, it's a known in a sea of unknown.  I've had friends from nursing school run into me, nurses who worked in Cedar just before I transferred up and I feel like I've made new friends but mostly it's all unfamiliar and shop talk is a nice familiarity for me.  I want familiar.  I want to hear Ginger bark at nothing, Pria to bounce at the front door because she heard someone say out, to hear Charlet get all excited and "have to have" the t-shirt that says "Cleverly disguised as a responsible adult" because that could be her Halloween costume, smell McDonald's on Michael after work and hear about Kaede's schedule for the week.  I want mac and cheese for lunch, to be able to go for a ride and not have to worry about traffic, to hear the rain on the roof and look across the fence at Bud's yard and pretend his garden is mine while wondering how many years until ours gets there.  To smell Neil's late night snacking and debate about joining him.

Once again, the things I've prayed and hoped for are hard.  I'm grateful for this hard, and even more grateful we are approaching the end of it.  I continue to see that while miracles happen, they come with a lot of hard things attached in one way or another.  I'm tired of hard, but I'm grateful for this experience--the world is a complicated place.

IMC from the far parking lot

POD #1

At our second day at the hospital comes to a close I think back over the last two days and realize that it feels like 2 weeks instead of 2 days.  I hate this time warp that seems to keep finding us, I guess I'm going to have to learn to just deal with it.

Surgery Day

We had to check in at the hospital at 5:15 am.  As in morning, except it's really still night time--cold and dark outside.  I'd forgotten my ibuprofen at home and didn't realize it until bedtime on Sunday so I didn't fall asleep until about 1 am.  I was crazy tired and very jealous of Neil's hospital gurney and warm blankets.  After getting labs drawn, him all hooked up, gowned up with the cutest little pair of disposable shorts, belly clipped he was finally taken upstairs to OR waiting around 7:20.  I went out to the car (which was parked very close to the front doors) for my hoodie and a few things and got breakfast.  They'd planned the surgery for about 3 hours so I'd planned on waiting until I talked to the surgeon to get lunch.  I was getting updates from the OR every 1-2 hours, no details just "he's still doing fine" I was surprised to get a visit from Amber who I went to nursing school with, and in hindsight she showed up just as I was starting to get anxious about what is taking so long.

I had found ibuprofen but didn't want to leave the hospital to find a real soda1 so I was also caffeine less at this point.  I did have a soda coming in, so there was hope in sight and chex mix and fruit snacks seemed like a relatively balanced meal.  I wasn't hungry, I just wanted to see Neil and talk to the surgeon.  Around 2 pm I saw the surgeon.  They didn't initially get clean margins on the pancreas so they took another slice and had to re-sew it up.  The old tumor around the celiac access was tedious to take away from the vessels as well.  We are hoping for clean margins there as well, but he took as much tissue and he could.  We wait and see for pathology reports at this point.  He did put in clips so it will be easier for the radiologist to mark.

Once back to his room he really wanted some water.  Not water on a pink swab intended to just moisten his mouth but that he sucked dry trying to get a drink of anything.  After sleeping a bit more he woke up hurting (he learned that post-op crunches are a bad idea) but each time he woke up, he was more awake.

POD1

Neil in I differ in a few different ways.  Perhaps most strongly in our morning habits.  I enjoy my snooze alarm and/or laying in bed watching the sunrise, listening to the birds chirp or whatever means that I don't have to be up. Neil gets up before his alarm is even turned off.  This was obvious with him trying to get out of bed and resulted in him sore and/or dizzy.  He's spent today learning the value of getting up slowly (or waiting while I unplug the SCD's, lower the side of the bed, arrange his tubes and lines) and then sitting at the edge of the bed for a while his body adjusts to being upright instead of vertical.  He's enjoyed apple juice, jello, ice water.  The surgeon does some cool things to avoid overuse of narcotics and they've helped control his pain, just wearing off a few hours before his next scheduled dose of tylenol and toradol.  He's not enjoying the incentive spirometer, the pain that comes between getting up and getting down, or the random pains that come with a long open abdomen surgery.

The LifeFlight helipad is just across the unit from where Neil's room is, it's been fun to peek at them, I've been able to catch them taking off a few times.

Tomorrow will bring longer walks (full unit laps instead of half laps) and sitting up in the chair pretty close to every other hour, a shower for me and tracking my car down from the valet (yet another long story)

1 This spring Intermountain Healthcare made the decision to get rid of pretty much everything with high sugar content.  Contraband sodas are now referred to as real.  Yes, I know that artifical sugars aren't healthy, besides not enjoying them they trigger seizures for me.  I can't change the rule and I most certainly didn't make it or have the ability to explain why.

Two Roads Diverged

I've always liked Robert Frost's The Road Not Taken

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveler, long I stood

And looked down one as far as I could

To where it bent in the undergrowth;

Then took the other, as just as fair,

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for that the passing there

Had worn them really about the same,

And both that morning equally lay

In leaves no step had trodden black.

Oh, I kept the first for another day!

Yet knowing how way leads on to way,

I doubted if I should ever come back.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.

I have viewed the traveler in this poem as having the choice of which road he picked, but as we are at a crossroads that leaves us very little choice I wonder if the traveler chose the road less traveled by or if that choice was made for him and he just went with it.  Not much of my life has been text book anything, and most days I'm okay with my road.  I am very grateful that pancreatic cancer is something that not everyone gets to experience up close and personal, from the initial breath stealing fear to people wondering why they weren't told sooner when we waited to tell until our minds were wrapped around what was going on and we could breath to seeing the look of pity and fear on people's face when they ask "Oh what kind of cancer?" and the only thing that comes out of their mouth is "oh, that's a bad one"

I never chose this road less traveled by.

I don't know how it will make all the difference, but I have the faith that it will.  There are lessons to be learned somewhere along this journey of mine and I believe I will come out on the other side a better version of me.  It's just a bit rocky and hard to travel on this road less traveled by.

As far as an update, Neil is done with his first cycle of folfirinox and has had repeat MRI, CT and PET scans.  He has had an amazing response to the chemo and his tumor has shrunk away from the vessels that were so problematic and had him not being a good surgical candidate.  We've talked to two oncology surgeons who both do lots of pancreatic surgeries.  We initially thought he'd be looking at a whipple surgery but more good news is he needs a distal pancreatectomy and splenectomy so less rerouting of his guts.  He will lose about 80% of his pancreas (neck, body, and tail will all be gone) and his spleen.  He received a bunch of immunizations today in preparation for not having a spleen (he will be more susceptible to infections for the rest of his life).  His surgeon mentioned that his PET scan looks so good that he only pulls out dead tumor when he gets in there because of his great response to  his chemo regimen.

A picture is worth a thousand words (I struggled getting them rotated, so tip your head to the left), the first image is Neil's CT from April.  The tumor is circled in blue pen marked with a T.  There is a small portion of the atrophying tail of the pancreas showing as well.

Neil's CT from April

 This second picture shows his pancreas and the tumor as it is now (again, circled in hard to see pen)  This area didn't "light up" on his PET scan which is good, possibility that the tumor is completely dead.  When a PET scan shows a malignancy it "lights up" like googled image.

Neil's current CT

 Neil also had an old CT from 2009 showing a healthy pancreas.  Comparing the healthy pancreas to now it's easy to see how atrophied it has become.  All of that useless pancreas and his spleen will soon be gone with hopes that the head of his pancreas is able to make enough insulin and digestive enzymes.  Insulin and Creon isn't fun, but is very doable if we can rid of the tumor.

An old CT of Neil's from 2009 with a healthy pancreas

We are on an upswing right now, feeling good about the way things are going but I know this is a rocky path not a lazy stroll down a dirt path lined with wildflowers and things will get harder again.  For now I'm enjoying Neil not hurting and not being sick from chemo.  We took an extra day out of town to have some much needed downtime and reconnect.

Heather and Neil at the aquarium

I do want to thank all of our family, friends, work families, neighbors who have been praying for Neil and cheering him on.  Prayers, cookies, messages of hope, coloring books and so much more have all been appreciated and they really have made a difference to us.

~Heather

Listening v listening, not being strong, and more

I'm starting to feel like we are settling into our new normal.  Realizing that my thoughts and plans for summer are gone and replaced by scheduling around chemo and the week after when Neil feels the worst.  Being able to plan and schedule things out a few months are gone and replaced with things like "chemo if his ANC and other lab work is acceptable"  I have lots of stickers for my planner that are now replaced with washi tape and a sharpie pen because they are removable/repositionable.  Heavy yard work is tabled for now, replaced by watering and mowing--weeds the same height are better than dirt, right?

I'm not comfortable here, and I'd leave it in a heartbeat if I could.  I can't.  I'd have a garden, hopefully a few trees I was babying and trying to get some lawn going.  I'd be working the beginning of one week and the end of the next and planning fun stuff in the middle.  Tweaking my camping totes to take weekend trips far enough up the mountain to be cool.  I'd be picking up extra shifts at work to help cover our being short staffed and complaining when we were busy and I craved a break.

None of that is happening.

I have learned a few important things though.  Nice quotes with a pretty picture in the background don't fix anything.  Some of them are entirely annoying.  With all respect to Walt Whitman, this one is the top of my frustration list.

My facing the sunshine doesn't have a beautiful ocean view, meadows, rainbows or anything.  My facing the sun leaves me looking like this.  You can keep your meme thank you very much.

I've learned a lot about listening.  How to listen and how not to listen.  I've talked and written about listening before, but I feel like it's been written on my heart now.  I had a friend stop everything she was doing on a busy day and say "Heather, I want you to know I've thought about you every day--can I ask how things are going?" and then she just listened.  In the hour before I'd been asked probably 10 times in various ways by people who really care but I was exhausted explaining and I totally suck at "things are just fine" type lies.  Sharing wasn't tiring when someone was Listening instead of just hearing the words coming out of my mouth.

Hugs are okay.  Hugs can say more than words sometimes.  I've had hugs at work when there hasn't been much time in passing a patient off to a higher level of care or when I'm trying to get from point a to point b quickly.  No time for words, but those hugs spoke volumes of care and support.  

It's okay to not be okay, to not be strong, to breakdown in tears, to not always look at the bright side (see the sunburn above)  Pancreatic cancer sucks.  It's heartbreaking to watch Neil be so tired and sick from chemo and there is nothing wrong with acknowledging that and spending some time validating how much things suck right now.  I choose to not live in that place, I get up and go about what needs to be done but I can't pretend everything is "just f.i.n.e" and paint a smile on my face and even if I could I don't want to.  Sometimes I cry myself to sleep, sometimes I lay awake all night praying to wake up from this nightmare, sometimes I pull the curtains so the room is dark and I sleep too long and it's all okay.  Some days I even leave the dishes in the sink and stuff on the counter or have hot tamales and a Dr Pepper for dinner because I don't want to cook.

Letting people help me has been hard.  Every time someone does something my head screams "No! you don't need them to do that for you--you'll find the time somewhere" but I've started letting people help and my heart grows each time.  Another hard to learn lesson from this is that I'm not in charge.  I don't know what our life will be like this fall, next summer, next week.  I've worked hard to feel organized and like I have it all together and now I realize it was all an illusion.  I like to plan, my book of life (otherwise known as a Mormon Mom Planner) goes with me everywhere and if it's not written down it doesn't get done.  All of that control is gone and it's been hard, I don't like the chaotic unknown.

I've also learned I'm not the only one going through hard things.  I've had a couple of people talking about their hard things apologize because their hard things have an element of good in them.  Hard things are just hard.  There is no grand scale of hard things or rules about you can only complain to people who have smaller hard things than you.  I'm glad to listen to other people, to talk about normal things because no matter how certain I initially was that my world was coming to a screeching halt, life goes on.  Weather gets unbearably hot, people take vacations, buy new cars, or struggle with more "normal" things than cancer and I haven't stopped wanting to be a part of people's lives.  I want to hear the sad, happy and in between.

I have more to say and I know this post has been all over the place, but that's okay too.

Bye for now,

Heather

The Clouds Make It Prettier

I'm posting from my phone and blogger doesn't have an app, so forgive any weird formatting or typos. I'll blame auto correct before it even happens because it's hard to read as a proof. The photo is also from my phone and only captured part of the beauty.

Utah has beautiful sunsets and skyscapes and tonight the sky was on fire and the clouds were beautiful adding extra dimension to the sky. As I took a moment to appreciate the sky and thank God for the beauty that surrounds me I realized that the storm clouds that had just been raining on me made the sky better. The storm made an ordinary sunset amazing.

I can't see how and I still hate cancer and wish it didn't exist, but I hope I can turn this storm into something beautiful from my very ordinary life. Don't get me wrong, I'd jump at the chance for ordinary and boring without a second though, but that doesn't seem to be an option right now.

***its nearly impossible to add a photo from a phone into blogger, it will come later***

So, Chemo...

It sucks.

Day 1 we spent what feels like most of the day at the cancer clinic getting medications so that the next few hours go smoother with less nausea or any other negative reactions then the cocktail that comprises folfirinox, ending with coming home with a fanny pack holding a home infusion ball full of 5 FU that infuses over the next 46 hours.

Lots of word puzzles, YouTube clips, Facebook browsing and we were done.  No throwing up, no reactions, lots of nerves and worries but over all it went smoothly.  Came home and went for a walk (we're back to slow walks counting as exercise) to get rid of the tired that comes from traveling or otherwise sitting all day.  Neil was tired and his legs felt heavy, but all in all it went well.  That night he couldn't sleep, but morning came anyways.  Day 2 was spent catching up on sleep and spending some time outside {fresh air and sunshine are good for the soul} and commenting on how "this isn't as bad as I thought it would be" and being very tired of the fanny pack, and tired in general.  Several naps but not a lot of throwing up or wishing he was throwing up.

Chemo Grenade

Today is Day 3.

Day 3 sucks.  Lots of throwing up even with all nausea medications on board and side effects from Irinotican.  My mind is tired and watching Neil be so sick and knowing that it's not going to end anytime soon.  I think back to my blog post Is Your Hut On Fire and remembering that every Hard Thing (big, small, and in between) I've ever dealt with has in one way or another been an answer to my prayers.  Chemotherapy is hard.  It rips at my heart and bring tears to my eyes on a daily basis but it's an answer to my prayers, prayers I didn't even know I'd be saying just a short time ago.

I daily think of the people who have dealt with pancreatic cancer before, when it wasn't treatable but they tried anyways, giving the medical field invaluable data.  We are benefiting from those efforts in ways I wish I could express to their families but I can't.  I have things to be grateful for, ICU remained closed so I was able to stay at home, the families before us, the technology in the little chemo grenade, the last 3 years, friends who call when they are thinking about you.  Even among the gratitude, today was hard.

Goodbye Normal

I don't think there is anymore chance of me falling asleep tonight than there is a kid on Christmas eve.  Except instead of bringing fun, tomorrow is sucking away my normal.  Instead of stockings and toys Neil gets a port implanted into his chest.  Normal won't ever be the same for us again.

Port placement at DRMC tomorrow at 7 am (I didn't want Neil to have to be fasting all day, but 7 am? *yawn*) then chemo here at CCH Wednesday at 10 am, coming home with a fanny pack with chemo infusing until Friday.  Normal.  Diarrhea, nausea, fatigue.  All normal. Work scheduled around chemo and oncology appointments, totally normal.

I wanted to get normal family pictures taken, before our new normal invades our life and I got them back today (thanks for being flexible Jenelle!)

Nornal.

These pictures mean so much to me, it's rare for everyone to be at the same place at the same time.  Our pictures from Provo was as close as it gets and someone was missing.  Besides pictures of Christmas pants, the last time we were together with everyone and there is photographic proof was our wedding.  I want decades of pictures, showing kids growing, new additions, people missing because of military service (even though it scares me), more wrinkles than I wish I had.  Crazy styles we thought were awesome, big hair we'll make fun of some day -- I loved the big hair.  I might not ever get all that.  For now I get our pre-wedding family pictures, wedding pictures, pictures in Provo and these, one of our last normal pictures before normal became a stranger I don't like.

The reality of a pancreatic cancer diagnosis has been very real for me today, I don't know if it's conversations I've had work, Neil starting chemo this week, realizing I still need to go chemo shopping (it's a real thing and much less fun than Christmas shopping) and want to get everything cleaned tomorrow, or reality starting to set in a little more.  I have a love/hate relationship with the uncertainty we are facing.  I mostly hate it.  I want guarantees and about the only guarantee we have is that things are about to get worse, like sitting on a hill watching black clouds roll in and the air change, I know a storm is impending.  Not so long ago the fate of a pancreatic cancer diagnosis was a lot more certain.  Pancreatic cancer meant death, and a lot sooner than had been thought of or planned. It's still not a "good" cancer to get, but there is a lot more uncertainty in the outcome than there use to be.

I still want concrete.  I want a date on a calendar I can do a count down chain to when we can go on long walks holding hands because that is more important than walking for exercise.

Girls days/nights where we paint fingernails that will chip the next day, spread charcoal on our faces (it seemed like a good idea at the time) or go for a drink. (uhh, I didn't get a normal picture of just the girls, I will have to fix that)

Blogger is telling me I have too many pictures, and my clock is telling me I'm going to get less than 6 hours of sleep, so the normal pictures will have to wait until tomorrow. 

Love, Heather

Happy Mother's Day

It's never what I expect, and today is no exception.  I miss 2nd ward traditions, I wanted to see our little Primary singing, etc.  Our new ward is starting to feel less strange, but I still miss our old ward.  It's apparently about a 4 year long recovery time and we are 4 weeks in.  I'll make it.

They did something today that I liked and have been thinking about all week, trying to gather my thoughts.  Sharing our favorite hymn with a short why.  Like many of my other favorites, context matters but all week I've been thinking of "A Child's Prayer"

Rules were simple, a 1 minute "why" and from the hymn book.  I had managed to write down a why that was condensed and photocopied the song from the Children's Song Book.  Both rules circumvented, but it was very busy and I still feel a bit guarded {unless I'm spilling all of my inner thoughts on here} so I didn't get a chance to share, hence being here.  The song is above, with scenes from Cokeville Miracle {great movie by the way} Here is my "why"

Spring of 2013 I was dealing with The Very Hardest of Hard Things and was very traumatized.  Up didn't seem like up and for a week or so I was surprised each morning when the sun came up.  I had no grasp on reality, but I knew that Christ knew me personally and believe that his heart ached with mine.  I'd had a priesthood blessing from my Bishop and I know he cared, but I felt very alone and very scared.  My prayers had very few words, lots of sobs and tears filled with emotions that there aren't words in the English language to describe.  I'm not certain how that week ever ended, but it did as the Hard Things continued to pour forth.  I acutely felt the lack of priesthood guidance in my home, as well as a partner or helpmate to get me through.

A few weeks after that very first night was General Conference.  I remember so many details of that conference, the feeling of the blanket on my lap, my snacks, the smell of breakfast, my little TV with crappy signal, the pajamas I was wearing.  Boyd K Packer gave his talk These Things I Know and in that talk are two great truths I needed to understand.

I have come to know that faith is a real power, not just an expression of belief. There are few things more powerful than the faithful prayers of a righteous mother.

Up until then I'd thought of faith as a feeling or emotion, not a power in itself and I discredited the power behind my wordless prayers that went straight from my heart towards heaven bypassing my mouth entirely. I knew God didn't answer my prayers how I had planned but I believed that yes, he does answer every child's prayer.  I don't remember anything else that conference, just that I was going to be okay.  I was fine on my own {fine is a relative term} and that my faith had power behind it, not just warm feel goods.  We were going to get through

Things are different now, We are dealing with Hard Things 3: Cancer, Again. instead of  Hard Things 2:  The Very Hardest of Hard Things  The kids are older (easier and harder all at the same time) and I'm not alone (but at times I still feel very lonely and afraid) and in some ways they are the same.  That first week feels like an alternative reality, and I'm not certain how it ended.  I'm not sure what I'm suppose to learn this time, but I'd like to learn it so we can move on to a chapter I'd like to call After Hard Things Life is Grand but I don't know that my life gets that chapter, so I'm working on finding grand things in the midst of Hard Things.  Life feels very uncertain for me right now, but I know Christ understands me, and he knows what it's like when I'm paralyzed with fear and uncertainty.  God does answer every child's prayer, and not just all those other prayers but my prayers too.  I believe in the power of believing.  What I wish I knew is where all of that is going to leave me, but for tonight I pray in sobs of uncertainty and fear knowing that there is power in that prayer.