Archive for the ‘Pancreatic cancer’ Category

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.


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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.

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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. 

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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

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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.


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.

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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.


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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,

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