Wednesday, March 14, 2018

Where we find ourselves, part two

They scheduled us for a consult with the neurosurgeon on March 27th and planned to continue with the radiation plan we made the day we got the surprise news about the spots on the CT scan.

Tuesday, February 27 was our first radiation appointment of 15.  Treatment would be five days a week for three weeks.  On the morning of the 27th, Anne-Marie was coughing due to a virus she was struggling with and cracked a rib.  I canceled the radiation appointment and rushed her to urgent care to see if they could see anything or help her pain in any way.  They did not and could not.

Anne-Marie was in so much pain that she opted out of doing radiation that week.  By the time we hit March 2nd, the plan became to "turn up the juice" on five radiation treatments in order to expedite the neurosurgery.  On the morning of Tuesday, March 6, the neurosurgeon called us and asked us to come in to the office as soon as possible. 

We met with the neorosurgeon who told us that he saw two spots.  One that would put Anne-Marie at risk for seizures and the other at risk for paralysis.  He recommended removal and biopsy of the first.  Openings for surgery were the next Monday or the next Friday.  We chose Friday, which is two days from right now.

Both the neurosurgeon and our oncologist assured us that this surgery is routine and not an emergency.  I'd have to say it seems hard to believe as it is brain surgery and they rushed us into a same-day appointment to get the procedure done as soon as possible.  Maybe they're just trying to ease our minds.  Maybe they just had an opening in the schedule.  I don't know. 

What I do know is that we're headed to surgery this Friday, 3/16/18, and that they are going after an area they saw first on a CT scan, then on a subsequent MRI.  It is about an inch back and above Anne-Marie's right ear.  The other spot (near the back of the upper skull on the same side) will remain until we have lab work done on the first.  From there we will form another plan.

In all things--and no matter what happens--we will trust God.  It is the only place we find true hope.


To check on some of the other things noticed in the MRI scan the oncologist ordered a bone scan.  The results came in today.  The doctor's see what they believe to be cancer in six different locations in Anne-Marie's bones.  This include a spot in the back right of the 11th rib.  This is the area that cracked two weeks ago and sent Anne-Marie to urgent care.

Treatment is pending and will be planned after Friday's surgery.

Thursday, March 08, 2018

Where we find ourselves, part one

After identifying a tumor at the base of Anne-Marie's neck in January, she was prescribed an indefinite regimen of the IV antibody treatment Herceptin combined with Perjeta. While we were hoping for that 2nd treatment breakthrough, but instead our next appointment with the oncologist revealed that--for the first time in 12 years--Anne-Marie's cancer has mutated.  It is no longer feeding on the same type of hormones and the things we've been doing since 2006 will no longer work.  The Herceptin treatment was ended after just one treatment.

The first step in attacking this new cancer was with Ibrance, an oral chemotherapy.  Anne-Marie once again pushed for more and requested local radiation on the tumor, if for no other reason to relieve her of some of the pain the tumor is causing her.  Although it wouldn't technically "cure" anything, the oncologist agreed that it would likely help the pain and gave Anne-Marie a referral for radiation along with the first month of chemo pills.

The radiation consult a week later took forever.  The radiologist talked for too long about what the process was and how it happens. We've done it before and I was ready to move on.  From there, the tech took Anne-Marie back to create a guide mask to more accurately direct the radiation beam to the tumor site.  Part of this process was doing a CT scan in that area since January's biopsy was located visually (the tumor is visible/can be felt with Anne-Marie's direction).  The CT would help map out the tissue in the area around the tumor.

After more than an hour waiting for the scans and molds to complete Anne-Marie came back to the waiting room, but the scheduler told us not to leave. The radiologist wanted to do a second consult with us. At this point I was getting irritated. It seemed like they were dragging out this process on purpose. We were waiting for the third time in the same appointment and after ten minutes, Anne-Marie went down the hall to get some answers.  The medical assistant was coming the opposite direction down the same hall to get us and nearly ran into her.

We were brought back to the exam room again and were only given a few minutes to sit in confusion before the doctor came in.  She informed us that the mapping CT they just performed had found cancer in Anne-Marie's brain.

By morning Anne-Marie's oncologist and pulmonologist added their opinions.  Cancer.

(This post will be followed soon with the second half of the story.  For now I need to go to bed.)

Thursday, February 22, 2018

Into Your keeping

Today was my daughter's 9th birthday.  This day was different because her birthday wasn't the biggest event in her life.  Today Mariah started at a new school.

A week ago, I had to tell Mariah that Mommy was too sick to continue homeschooling.  She cried and asked what we were going to do.  I promised her that we would find her a different school that would still be a Christian school, because that was important to her.  We talked a while about it, then she ended the conversation by saying, "It's OK.  Whatever is best for Mommy."

This has been a devastating thing for us.  We put Mariah in homeschool because we believed it was the best thing for her.  After two years of distractions, our primary focus last summer was to put our children in a place where they could thrive.

But things change.  Over the course of the fall, Anne-Marie began feeling progressively worse.  We didn't initially think that it would come to this, but after two weeks trying to make a decision, it was the right thing to give Mariah a consistent education plan.  Thankfully, after a couple of days of arm-twisting and begging, a spot opened up at Elisha's school.  Our experience at Cornerstone so far has been good and we hope that this will end up being an accidental fit for Mariah.

The night of our talk, Mariah went up to her room and played the same song for the next hour from an old CD she found in our basement:

Lead me on, lead me on
To a place where the river runs into Your keeping
Lead me on, lead me on
The awaited deliverance comforts the seeking
Lead on


Monday, February 05, 2018

Siege the day

The past three weeks has felt like cancer has us under siege. For the past 12 years we’ve always known when the pain would start and end. There was always a surgery date. Always a treatment cycle. All we had to do was make it through.

This time’s different because it’s the cancer, not the treatments, causing the pain. And it’s not just a twinge of pain, it’s constant. Anne-Marie is in so much pain she can only be up on her feet for a few hours a day.

Herceptin/Perjeta treatment #1 was on 1/29. It hasn’t helped so far. Our previous experience has always seen the greatest difference between treatment #2 and #3, so we’ll hold out hope for that.

Meanwhile, we’ve made ourselves comfortable as possible here at home. There are no big plans and if there were, they got canceled. My new job is full-time work-from-home, so it’s allowed me to keep almost all my attention on what’s going on here. Our time here is still enjoyable. And quiet. Very quiet.

Going from a life where you’re alway leaving home to one where you never *leave* home is a shock to the system. But we’re trying to make the best of it, understanding that whatever it is that’s happening here is beyond our control. If life demands simplicity then we will submit to its demands.

We know God is the ultimate decision maker in our situation. I don’t understand it and I’ll even admit I don’t like it, but we will continue to struggle to find contentment even while we’re surrounded.

It’s a war for peace.

Saturday, February 03, 2018

Disneyland post #6: memories and magic

I intended to publish this post a year ago, then life went crazy and has stayed crazy ever since.  I pulled it out of my files and put it on Blogger today to honor a promise I made to myself to complete the Disneyland posts.

1.  Disney Hotels: We stayed in the Grand Californian solely for the option of Anne-Marie being able to go back to the room and rest whenever she needed to. The hotel is spectacular and deserves its own post.  Early admission every day, impeccable service, rooms with park views, exclusive gate to the park, etc. If you're in a similar situation as us, the GC is your best bet. (Or you just want the best experience and cost is no issue.) If not, I would recommend that you stay somewhere within 15 minutes walking distance to the gate at most. Use that money you didn't spend to get a suite and maybe some extra souvenirs if you want to spend that much. We actually stayed at one of the very close hotels after flying in (Anabella) the first night  to save money and found it to be serviceable. Next time (whenever that is) we will likely stay off site. There's much more to be said. Contact me if you want to know more about the early admission thing, check-in at the Disney Hotels or switch between hotels or anything.

2.  Snacks: In order to keep everyone in a good mood, I recommend getting one of those small drawstring backpacks with a first aid kit and a bunch of non-perishable snacks. Nuts, granola bars, fruit snacks, etc. Disney will let you bring in your own food as long as it's not in a glass container. We saved a ton of money on in-park-priced snack pit stops by filling one of our allowed checked bags (thanks SW!) completely with snacks from Grocery Outlet and using that same bag to carry all our souvenirs home.

3.  Pressed pennies: The most well-known things to collect at Disneyland are trading pins (look it up).  These things start at $10. You can trade up at various stations around the park, but if you want a collection, you might as well fork over $100 to start. I put the brakes on the idea before we even left home. My alternative plan was to collect elongated pennies from those smasher machines in the gift stores. They're fun to collect too and they only cost 51 cents! Did you know Disneyland Resort has 127 penny smashers on site?  We spent $40 or so collecting about half the ones available and had just as much fun hunting them down.

4.  About those souvenirs: Many tips and tricks books/websites are out there that are much more helpful than this post concerning all things Disney. One tip that's pretty common is to buy your souvenirs ahead of time from Amazon or Walmart to avoid paying the Disney Resort prices. It's a good idea, but we found that there are items you will never see in person in the shops at Disneyland. If it is an option for you, nothing will replace walking through the store with your child and letting them pick something out. We made them wait a few days before buying, but our kids made their final and, yes, costly choice on Wednesday of our trip. (Our kids had their own Christmas/birthday money saved for over a year.) However you make it work for your family, the stores are fun to look through and you should probably buy at least a little something to remember your trip.

5.  Our souvenirs of choice: Anne-Marie bought a shirt with a sketch of Marie from The Aristocats. Buddy got a Lego version of the Millennium Falcon spaceship. Sissy chose a music box with Anna and Elsa from Frozen, a Tinker Bell dress and a stuffed Marie from Aristocats. I went with a coffee mug with Cars Land postcard art and a pressed coin (see #12) depicting balloons carrying away the house from Up. I keep the last one in front of me at my desk. Every time I think life would be better if we made it to Paradise Falls, I just look down and remember it's as much about the journey as it is the destination. At least in this life

In conclusion:
One final thought about "magic": One of the words I heard time and again when people heard that we were going to Disneyland is "magical".

"Have a magical time!"

"Disney for six days? That sounds magical."

Two of my greatest character qualities are being cynical and being analytical. For years we've talked about doing this trip, but to me doing Disney seemed more like a way to get our money to magically disappear. And we all know the truth, right? It's expensive. Too expensive.

We did almost everything thing you could do at Disneyland.  We all had fun (even Mom!) and are planing to go again in 2021.  From walking out of the main gate, to sitting in John Wayne Airport, to arrival back home to a early February frozen Portland, we kept talking about how great it was.  A lot of it went into these six blog posts.

Now that it's a year later, the kids will still talk about their favorite memories and rides and times in the hotel.  They get excited when they talk about 2021 and what it's gonna be like when we go back.  Who knows what could happen inside the next three years, but you know what?  I'm kind of looking forward to it myself.

And I guess that's magical enough for me.

Wednesday, January 17, 2018

I'm not sure how to say this

Two weeks ago, after a long interview process and getting all kinds of counsel and advice from people I trust, I resigned my position as Project Manager at Centerline and accepted a job offer at Acom Consulting. That's what this blog post was supposed to be about.

In the week leading up to my departure from the company, Anne-Marie was scheduled for a biopsy at PeaceHealth Southwest Medical Center here in Vancouver to take a look at another swollen lymph node. 

You may remember that we went through a nearly-identical process early last year which resulted in us discovering sarcoidosis (benign granuloma tumors) throughout Anne-Marie's body.  The treatment for that—while successful—has been incredibly difficult and is a lot of the reason why you haven't heard much from me since last summer, either in person or online.

The location of the new area of concern was about an inch away from the one from the one I just mentioned and was causing Anne-Marie pain off and on.  Anne-Marie brought the issue up to the doctors in April, but her concerns were mostly brushed aside since the nearby area from last January was resolved as a non-threatening situation and was being treated. 

The coverage of the quarterly CT scans fell just short of this area, so it was considered unknown.  Nothing could be proven either way, yet Anne-Marie persisted for eight months with her concern and that's how we got last week's biopsy scheduled. 

The oncologist and surgeon opted to biopsy rather than altogether remove the "inflamed lymph node".  Tuesday the biopsy was performed; Friday we found out that it wasn't another lymph node.  It was a tumor.

A malignant tumor just under an inch in diameter was found at the base of Anne-Marie's neck.  It has tested as a positive match with the other cancer, which means it has spread.  It is inoperable.

Now that that's been said: we all try to put a positive spin on this kind of news to make it more palatable for people, right?  Well, I'm having a pretty hard time with this one.

The battle lines have been drawn.  Treatment starts next week.  In God we trust.