Friday, June 23, 2017

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,

Thursday, May 25, 2017

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***

Friday, May 19, 2017

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.

Monday, May 15, 2017

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!)

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

Sunday, May 14, 2017

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.

Friday, May 12, 2017

We Have A Plan

We saw oncology again yesterday and left with a plan and lots of new information.  Serious information overload.

Good news is there is no metastatic spots (spreading) so it's all just hanging out in his pancreas.  Overall staging is stage 3 (T4 N0 M0).  Bad news it is still wrapped around the artery (celiac access or celiac trunk) in a place that the artery can't be sacrificed and it can't be cut away from the artery so he isn't a surgical candidate yet.  Plan is have a port placed on Tuesday and then start a chemo regimen called Folfirinox.  It's as aggressive as chemo for pancreatic cancer gets and we hope it shrinks the tumor away from the artery so that Neil becomes a surgical candidate and we can just have it all cut out.  The surgery is a big deal surgery, but I'd like the tumor out of there.

We have a class today to talk about his chemo and plan, then family pictures tonight and then we have a break until Tuesday early morning.

Tuesday, May 9, 2017

How Are You Guys Doing?

I can't count how many times I've been asked that the last few weeks and I know it's from a place of caring but there is no good answer or even an actual answer.  It varies day to day, sometimes even hour to hour.

The first week everything was foggy and hazy.  It was like I was reading a well written book without interruptions and I was putting myself into the book, feeling what they felt.  Except when I read a book that way I wake up the next morning and I'm back in my life. I'm grateful for the muted feelings, I don't think I could have cried anymore and my chest hurt from fear of the what lies ahead.

The weekend I was able to mostly pretend things were normal.  We did a dump run and got rid of some weeds and yard waste, discussed the rapid cycling that Utah weather has, went to church and had family dinner around the table.  Normal things.

Monday I was nervous and busy with school stuff (it is May after all) homework, plays, laundry, dusting, vacuuming, laundry and then some more laundry.  Busy enough that I was able to focus away from the nerves.  Today everything felt very real walking into the Cancer Center for Neil's PET scan, without the book like quality from a few weeks ago. I'm anxious to have more of a plan in place for treatment, I know that staging his cancer is crucial to making the best plan possible but I'm tired of this limbo land.  I want to discover what our new normal is going to be.  I want to have weekends off and be able to escape for the weekend to the cabin.  I want to wake up and find out this is all a bad dream (it's rapidly losing it's dream like qualities though).  I want this evening to last forever, it's quiet except for the rain and I'm not worried about my to do list, and I have pineapple spears from Costco.

How am I doing?  I'm rapid cycling through the stages of grief, if you don't like my answer wait an hour or so and it'll change.

We have marked a to do off the list of things we need to do, but won't have an update until Thursday.

Love, Heather