Los Angeles

 

We made it.

The drive through L.A. was brutal.  I have zero clue how people live here and do this on the daily.  We are soooo incredibly spoiled where we live.

It's sunny and warm here!

Ahhh.

We arrived and checked in only to be told the key card machine is down.  They will walk us to our room.  Uh.  Really?!

I sat in the sun while the crew waited.  Half an hour later I stood in line to get our money back.  I had another room on hold nearby.  The fellow at the window was great and he got us settled right away.  We still have no key.  Keys available on Monday.  We check out Monday ;)  

Rolling with the inconveniences.

The room is spacious and spotless.  We have two bathrooms and a tub for me.  The beds are plush. 

Universal tomorrow.

This mornings sunrise.

Made to Modesto'ish.

 

Clear, easy passage most of the day.  Eric is a hero.  Four of us napped most of the day.

The timing worked for lunch at Heaven On Earth. It was amazing.

We resisted the treats.  It was hard to walk away from a chocolate mint cake though.

The queen carrying the pod for the 1st time. It's tight but the kids aren't touching ;)  Which is a good thing.  Kai would be in danger if Jia could reach him.  Haha.  He is so gross with the gurgling cough and snot bubbles.  

This morning Jia managed to lock us out of the bathroom with no one inside.  Eric took a wooden hanger apart and used the long metal piece to get us back in.  Hero.  

I'm doing ok.  I'm uncomfortable.  I would be uncomfortable anywhere.  I'm starting to think the surgeon cut a lot more of my butt than I was expecting.

I got a call today to rebook the pet scan.  I have an mri in the morning on the 10th and the pet scan the same day.  I only have to fast once ;)  Is that a cancer win?  For everyone voicing that we shouldn't hold up progress for a trip.  The booking was offered for the 6th.  So, four days.  Not a huge loss of time.

This is a super cute bee butt.

It is way, WAY cuter than my butt.

Just about made it to Portland.

 

Two cars ahead of us at the border.

Stupid ferry delay got us to Seattle for rush hours.  Sigh.  We didn't make good time but it has been smooth sailing.

We all ate the under $10 value deals at Dennys.  Then stopped at a Dollartree for snacks.  We're tucked into a Red Lion.  Room is decent.  Breakfast is included.  

I think/hope we might get lunch at our favorite restaurant Heaven on Earth tomorrow.

It's gone better for me than expected.

Everyone is in good spirits.

Obligatory ferry shot.

Tally Ho

 

Ready or not, we're off this morning at 6am.  Three kids are very excited.

I haven't pooped myself yet today.  I'll call that a win. Taking care of me right now is a whole lot extra.

Sassy and Coco were very aware I was leaving and they were upset this morning.  Sob. 

Much to Jia and Luk's dismay, it appears that Kai is currently the tallest.  Haha.

Oh, and Kai is getting sick.  Sniffles and clearing his throat.  Omg. A giant toddler that doesn't know how to use a tissue, in close quarters in a car for three days.  It's enough to instill pure panic. Plus, will we even be able to get on the boat if any of us are sick?!

Also, there was another drive by shooting episode Tuesday in the wee hours on Day Road.

Update.

Our 7:45 ferry is cancelled. Mechanical issues.

Which means our reservation is cancelled.

Our options are drive out and get a refund and try to find another route off the island or wait for possible space on the 10:15.

The next sailing out of Departure Bay is canceled due to a lack of staff.  Don't get me started on their whole part time staff situation.  Of course they have issues getting people to come in when they don't have a livable wage.

The people with reservations on the 10:15 boat have priority.  So we are on standby with only 18% availability.  

We are in an oversize line up and fourth behind three big delivery trucks.  So there is some hope.

Heck of a long time to sit here in the car.  Once again.  Can we talk about how much I despise BC Ferries and their ridiculous protocols.  If we have been here since 6:40am shouldn't we get on board before the following sailings?!

Not the greatest of starts.

However I still haven't pooped myself.

Oh, and playing the cancer card doesn't work for priority here.  

Health update.

 

The day started pretty rough.  I was up at 2am.  Very dizzy and hungry.  Eric helped me down and settled me with snacks.  It was a long day.  My area has some local freezing.  I'm assuming.  I can't feel some areas.  Movements are VERY painful. I did manage a bath this morning.  I will do a toilet hat for a sitz before bed.  I used the peri anal squeeze bottle through the day and it works really quite well.  The surgeon said there was a gauze pad inside that would come out with a movement.  It did not.  Fei said pull it.  That sounds too scary.  For part of the day I was incontinent.  The dizzy wore off around dinner time. It was severe.  My whole goal of the day was to not fall down. The incontinence seems to have passed thank God. It was  perhaps due to swelling.  If this is too much for ya'll, you might need to either toughen up or skip on past.  This will be the new reality.

Being incontinent for a few hours was scary.  If that is what chemo and radiation will do to me then it was a good awakening to my thoughts towards a stoma and bag.  The bag would definitely be preferable to incontinence. 

I haven't needed a pain killer yet.

Not every one is enjoying my humor on all of this.  This is HARD stuff.  But please remember I have fistulizing Chrones.  Worst case scenario.  I have a history of perforation.  If I were to perforate death can actually happen within hours.  I have lived for years and years and years with this knowledge.  I do consider that with everything we do, how close are hospitals and are there flights home.  Luk and I both need to be able to get help quickly were things to go south.

You would go insane if you stay in that mindset.  So we are mindful, but then carry on and live our lives.  I see cancer as the same.  I'm decently healthy for a sick person with several co-morbidities.  I was born pre-mature.  I had body parts in the wrong place.  No one checked those things out 60 years ago.  I didn't find out until I was really sick in my early 30s.

I have people saying I should have known there was cancer.  Nope.  The symptoms are the same as ibs, colitis, Chrones, colectomy and fistulas.  How would I have distinguished?  The same issues for 22 years!  I had them all and they were considered normal for me.  I was with the surgeon to talk about the fistula that has been more troublesome for six years.  She didn't even want to do the scope saying that she could possibly make things worse.  I pushed for the scope.  It was dumb luck that the cancer was found.  Dr's considered my symptoms normal for my conditions.  

Things are much improved tonight.  I haven't napped today.  Too busy taking care of my butt.  Answering questions.  Chatting with some.  Texting with others. I also finished a captivating book I needed to get to the end of.  

Eric was around.  He did the brakes on the Commander.  Oh, oh, and Jia packed today.  Whoa.  I'm soooo glad my desk was cleared, personal paperwork all taken care of and packing done because I sure wasn't ok enough to do any of it today.

Lili was here for dinner and she wanted to plan our Shawn Cassidy trip.  We are going to Hullo over and use the bus to our hotel.  The hotel is beside the theater and there is an Italian restaurant behind the hotel that she says is good. In the morning she has added us going to The Bunny Cafe before we head home.  So that's exciting.  With all things now...all hinging on appointments and availability.

Alive

 The blog is handy sometimes.  I can get away with one update.

My support team was very active today with thoughts, wishes and prayers.  I love it!  Thanks guys.  It helps.

Today was a gong show.  I don't want to be whiney and complaining.  I'm hoping to do my battle with grace and thanks.  It was hard today.  My body was uncomfortable.  My sensory issues were on overdrive.  It was super, super hard to get my comparmentalization skills to stay on task.  It was a LONG day for for both of us.  We left Duncan at 9.  Home at 8:30.  

Small summary.  The plan changed.  I ended up not getting into the operating room until 3:30 - 4.  Then out at 6:30.  The general anesthesia was switched to max dose sedation instead.  Easier for healing.  There wasn't any good news.

The surgeon will be passing me on.  I will have a team, for good practices consulting.  She is going to stay on my team and will be in the operating room for the big surgery.  She was clear that my best chances will be to go with a stoma.

She also let me know that her patients who fare the best in their battles are always the ones with a good attitude.  So when I say that mental health is the main goal.  I mean it.

For today, we picked up some pain meds, opiods, so of course I'm too scared to take them.  I'm uncomfortable but no where near the point of taking an opiod.  Today was more than I expected.  The recovery is a lot.  Now that I have my list of things to do and not do I can see why she thought I should cancel the trip.

The trip is going to be extremely challenging for me in a few ways.  But mostly in that I need to do a sitz bath after each bowel movement.  Reminder, with a total colectomy, the average is 8 times a day! That is a lot of sitz baths! Uh....how does that work on a road trip, in hotels, public bathrooms and on a cruise with no tub.  We just bought a peri anal wash bottle, like a portable bidet.  We can pack a kettle and thermos for warm water.  This will keeping things interesting or annoying, or both ;)

Eric and I have made it to Noddle Box.  My little kids box.  So cute.  I couldn't eat it all. I was starving after my 22 hour fast.  Thanks again everyone for your support. It definitely helps.

T'was the night before the next biopsy.

 

Today we headed out with different folks.  Our lead was Trish who we have met before and there were two other Jeepers there that we have been out with in the past.  There were nine of us and Eric took the gunner position.  There was a full size Toyota and a Gladiator with us so they required a bit more time and spotting.  Overall though the day went smoothly for most of us.  One door crunch, one fender crunch, one mirror off and one overheated Rover.  Oscar came through unscathed.  

It was -6 when we headed out and it didn't get above -1 all day.  We left just before sunset.  The others were headed for sunset views and a fire.  We did six trails so I was pretty happy to be headed home.  That was a lot of jostling.

Tonight is some surgery prep and more of the same in the morning.  Check in is at 11:50.  So we will drop the boys  at school and head to the hospital.  Reminder, this is for a biopsy.  Not the big surgery to remove body parts and build a stoma.  I haven't even met the next surgeon yet.  Baby steps.  Day by day.  One thing at a time.

Tomorrow we pray that the colorectal surgeon is able to remove the entire cancer lession and that it isn't advanced or spread.

Mom took me for toes on Saturday.  Perfect timing for the holiday.

We leave Thursday.  Hopefully.  At this point, timing wise we are good to go.  I think.  

Eric, Kai and I are packed.  Luk is just finishing putting his things in his suitcase now.  So he is almost done.  Jia has done nothing.  I'm remaining calm and trying my best not to nag.

We have a strange cat hanging around.  Meowing all night.  Brave enough to be on the porch.  Today the cat bowl was empty when we got home, which was odd since I filled it this morning.  I suspect the stranger has figured out the cat door.  

Scan is broken.

 

So sweet.  Sob.

However, let's just pray things go a heck of a lot better than needing more transfusions ;)

The day wasn't a total loss.  We did find this chair at the ReStore.  Perfect for my new dressing room.  The picture doesn't do justice to the color of this fabric.

I kept track of my sugars for three days, bathed with no scents, wore no deodorant, no metal in my clothing, drank a ton and a half of water and fasted all day.  We left super early because of hwy closures recently.  We were there a half hour early, signed in, did the paperwork, registered Onyx for six months of free parking and then were told the pet scan was broken.  We sat and waited two and a half hours and were given conflicting updates until the final 'it won't be today'.  We were told likely not tomorrow either.  They don't work on weekends.  So, they will call the surgeon tomorrow to find out if it needs to be done before Mondays surgery or not.  If it does, then the surgery will have to shift.  Sigh.  So the perfect timing is messed up.

The island only has one pet scanner.

It was our 1st time at the cancer clinic.  It's a very busy place.

I was starving.  We went to A&W so I could have poutine.  Comfort food was needed.

Just in case, I will fast tomorrow morning in case we get a call.

Oh, and while waiting I was called to book a second mri.  There was some confusion because I just had one.  The one I had was pelvic.  This one is rectum.  It's booked for Feb 10.  So an updated mri to be done after the 2nd biopsy.

Before we left for Victoria I did get my year end boxed up, 2024 files boxed.  New files made.  Payroll turned in for t4s and the box delivered to the accountant.  Phew.  So my desk is caught up.  All in all the day was disappointing but lots of other things got done.

Oh ya, this happened too, I lost our Malahat Skywalk cards.  Then realized I also lost the boys disability ferry cards.  I have done an exhaustive search for them.  I finally gave up and booked a ferry paying full price.  Then yesterday I picked up an old purse and it had something in it.  Yup.  The missing cards.  I have zero clue why I put them in there.  Missing since before last year's Alaska cruise in May.  Sheesh.  

It came!

 

I couldn't love it more.

It's perfect.

I have no clue how to attach it to Onyx or if it will hold out rain. Problems for another day.

Nightmares

 

Catching the rays for a few minutes. They don't seem to notice Finn is gone.  Having said that, Sassy stares at me non stop now, so perhaps she has noticed? 

Penny took these.  We're pretty cute.

Sob.

Finn is home.

I did finally order a pet urn.  The one I wanted (something similar to Lacie and Izzy's) was out of stock. Izzy is in the urn in the photo, Finn is in a cardboard scatter tube.  It was a long rabbit hole shopping venture.  I finally picked one I didn't hate and was inexpensive so I can upgrade another day.  Pure craziness.

I was awake a lot last night.  Bathroom trips, nightmares and a doozy of a night sweat.

The night sweat was awful, like menopause awful.  So random.  The bathroom trips are normal for me.  The nightmares were bonkers and all over the place.  Finn howling and I can't find him.  The pet scan glows like an Xmas tree and there is cancer everywhere.  We can't find the car on the holiday. Highway closed, stuck in the car for hours with no bathroom.  Such a fun night.  Not.  I don't typically have bad dreams so it feels unsettling today.  A big sense of impending doom.  Likely a normal response to cancer staging in general.

Yesterday I went to Nanaimo on my own for an appointment with a dental surgeon about a tooth removal. I briefly contemplated a walk, a park, a mall, a lunch out, visit with Lili or even a movie.  Then the second I left the building I got in Onyx and high tailed it straight home.  I had packed a lunch but ate it at home.  Then had a wee nap before we picked up the boys.

I'm staying in jammies today.  Forcing myself to sit at my desk and complete some paperwork tasks.  

Crofton Estuary

 

11 for coffee, 9 for the walk and 14 for the pub dinner.

We all had a great visit.  It was nice to be able to all find time yesterday.

The pub dinner didn't work out for me.  They messed up my meal, remade it with another mess up.  I was pretty hungry by the time we got home.  I snarffled snacks and took myself up for an early bed time.  Jia had me up the night before and I was exhausted.  Then had a chill.  First one in a long time.  I hate the chills.  I should have just got myself into the hot tub but I was too tired so just layed shivering until it passed.  Sassy doesn't throw much heat ;)

Good Dad moment.  Four of us have data for the USA and Mexico.  Kai doesn't have a phone plan so we are taking his dvd player from the trailer for the road trip.  I personally would have just selected some movies for him.  Not Eric, he packed it all into the house and spent 40 minutes going through each dvd with Kai until his little pack was crammed.  Kai loves movies and discussing movies so he was thrilled.

Funny thing, we were expecting company, I had cleaned the table and laid out snacks.  I didn't want Kai to see the snacks so fed him a plate of lunch on the couch.  That he ate while they were looking through the movies.  I came in the room and Eric was setting Kai up with lunch.  What?!  Kai told Eric he didn't have lunch.  Because he didn't eat his lunch at the table.  I'm not sure how deeply involved Eric was in the project to not notice Kai inhale his lunch.  

I did the heart test this morning.  Easy peasy.  Then we went to Walmart for a couple ingredients for a new recipe.  I got a call from the cancer clinic.  A long call in the Walmart lobby, answering a lot of questions.  My pet scan is on Thursday.  

This is new to us.  Apparently I'll be radioactive after and can't be with the kids until after 10pm.  Our plan is to scoot home and lock me away in our room.  Kids, pets and possibly Eric can just avoid me.  So weird.

Our sucky little town.  It took five pharmacies to pick up the supplies for the surgery prep.  We never did find what Luk needs and just ordered from Amazon.  

A chandelier.

 

Sneak Peek.

Drywall, caulking, primer and paint are done.  The chandelier is in!

Flooring is next.

It's a pretty darn fancy closet room.

Cancer progress:  a three page instruction sheet came for the surgery on the 26th.  The last biopsy with sesation was 45 minutes from check in to leaving. This next one is a general with an anesthesiologist and is booked for six hours.  I did a different blood panel than usual and it looked ok.  An hiv test that hasn't come back yet.  I'm booked for heart tests on Monday at the Duncan hospital. I joined a couple ileostomy groups, one for women, one for anyone.  It's been shocking reading.  I naively thought I might get to sleep through the night, but apparently not.  I also thought diet would be less restricted but again, apparently not.  So, damn.  I'm learning.  I'm horrified at the stories.  There is just nothing great about any of this. I didn't know that stomas make loud noises.  That aren't controllable.  That sounds super fun. Omg.  Also apparently people name their stomas.  Jeeps was a stretch for me...but stomas?!

On Sunday we have a few friends gathering for coffee, a walk and a pub dinner out.  So that's a fun distraction to look forward to.

I'm in bed listening to sirens going completely nuts in town.  I'm guessing there is a big fire.  So many fires lately.  Duncan's finest need to be corralled up.  

Through it all, I miss Finn.  Like crazy.  He took up a lot of my day apparently.

Oh, and I went to Dr Google.  We all know not to do that.  It was scary.  Reading that my cancer is one of 73 cases since 1933 was just not helpful. Prayers needed that the next biopsy is more conclusive and show a less harmful, more common cancer.

Well Shit.

 

Well so far 2026 is sucking pretty hard.  Yesterday was truely awful saying goodbye to my furbaby.  Today Eric and I met with my surgeon.

I have cancer.

In the rectum and anus. So, so glamorous.

Typically chemo and radiation would be the treatment plan but not for me because there are four fistulas.  We were told the most likely scenario will be the total removal of rectum and anus (Barbie Butt) and a colostomy (stoma and bag). The mri didn't show further issues in the area but unfortunately shows issues in the uterus.  Next steps are another surgery Jan 26 for more biopsies for more conclusive answers.  A pet scan. Blood work. A referral to a different surgeon for the abdominoperineal resection and ileostomy. Another referral to a gyno specialist to investigate the thickened wall.  Most likely biopsies and then a hysterectomy. The surgeon today didn't feel she could really speak about that part.  She did ask if we could cancel our trip.  

The kids have been told.  It's not secret.  I told them there were lots of tests and big surgeries coming up and that I would let them know when it's time to worry.  For now we're hoping for cut to cure outcomes.

I am NOT at all delighted about a bag.  A permanent bag.  Ew, ew, ew. This just sucks big time.  Part of me is surprised I made it this far without a bag so we aren't shocked.  Just disappointed.

Funny sidebar.  Luk and Jia were together so I told them we needed to talk.  Eric got Kai to put his phone down.  I wouldn't have bothered because there is no way he could understand.  He ended up in tears because he was upset about putting his phone down.  None of the kids are ok with the news. Except Kai ;)

Eric and I will muddle through as we do with all medical trials. Step by step and day by day.  He is still dealing with melanoma.  We will be using humor and often dark humor for our coping mechanisms.  So far, there have been lots of off color and gross jokes.  Also distractions.  Lots and lots of distractions.

Packing has started for the trip we may or may not be able to go on.

I did suggest to Eric that he and the kids could still go, that I didn't need him here for biopsies and tests.  He doesn't love that plan. 

I have my ducks in a row for the three cruises booked.

I finally picked the dragon tarp.  Red dragon with roses.

The closet room is primered and ready for paint.

We finally met Dm and Al's new puppy on the weekend. Satchmo.  He is a perfect floppy doll and oh so adorable.

Eric and I headed out snow wheeling, just us.  He wanted to try out Onyx and make sure everything was working.  It is.  However the lever is still too hard for me to pull into gear.  The snow was heavy after all the rain and difficult to drive in. It was like diving in Autotopia.

Beach shoes ready for me and the kids. We had fun tonight figuring out the jibbitz.  Back left is me, grey is Kai, navy is Luk and front right is Jia.

I miss Finn.

He was a big personality and it's just too quiet here.

Rip Finn.

 

Rest in peace my little Stormtrooper.

I couldn't have loved you more.  I am totally gutted.  It's super hard to breathe today.  We had you five years longer than predicted and I am so grateful for our time together.

I hope Izzy and Grampa meet you today and get you whole and warm.

I'm left here struggling to figure out how to live in this house without you.  It's so empty.

One day we'll be together again and I'll sing horribly and you'll howl horribly and all will be right in our world again.

Alive times 2

 

She's home!

Alive.

It was a software malfunction caused by the 4x4 gears not engaging as they were seized and the car not communicating properly because pins were damaged or not engaged in the can bus converter.  That's the short version.  

Phew.  It's been a challenge.

I'm not sure how much I trust her but I'm delighted that her brain is back in working order.