Tuesday, October 23, 2018

October 2018 scan results and what that means

Hundreds of you saw last week's post on insta/FB, so I probably don't need to go into the specifics except to say 12 out of 14 tumor sites look good and we're working on the other two.  We are grateful to God for a good report (and don't forget those doctors).

Here's the epilogue of what that means to us on a daily basis: It means nothing.  It appears that all of the pain, fatigue, skin problems, stomach flu is not from cancer but from the treatment.  We are still fighting the same battles and more* that we were fighting a week ago.  But in a different sense it means everything because we know the treatment is working.  We waited through the entire summer and half of the fall blindly going through misery without promise of a return, but now we know.  That's huge.

*By the time we hit Monday morning we found a new arena for this battle.  Anne-Marie's feet have become so damaged by the chemo that a previously-recommended visit to the podiatrist has now been rushed.  The appointment happens today and I have exercised my spousal naggingness to demand she remain in bed until we know what to do.

I'm glad we got some good news to remind us why we're fighting because the bell just rung and we're about to start throwing more punches.

Wednesday, October 10, 2018

Shrinking world

We have now reached the five-month mark of chemotherapy. As of last week, this is the longest treatment plan Anne-Marie has ever been on. This one's different because, as far as we know, it's perpetual.

The past two and a half months has been the most challenging of any treatment we've done these past 12 years. Daily doses of the chemo pills have affected Anne-Marie's tolerance of food, sleep patterns, energy level.

I'm sure some of you reading this can understand what it's like to have a single circumstance that affects your life completely in every area and never goes away night or day. We have fought to maintain an atmosphere of normalcy at our house for years, but lately that has become nearly impossible.

Every item that is a "must-have", every action that is a "must-do" and every event that is a "must-go" is put on trial for the sake of survival. It is the poverty of everything; it is the possession of everything that matters.

Starting this month I have decided to step away from many things, including responsibilities at our church, in order to relieve stress in this situation and regain focus. This continuing adjustment of priorities is helping me understand and prove to myself where my values really lie.  And it's allowed me just a few more moments of quiet to remember that there's always a light in every darkness.

It's taken me 2 weeks to write these six paragraphs, so I guess I'll click Publish. CT scan and bone scan are scheduled for October 16 with the results given two days later on October 18. Pray for us. Anne-Marie has fought through so much to get to this point.

Tuesday, September 04, 2018

Tuesday, August 07, 2018

The Summer of 2018

I'm not sure how I keep taking summers off of blogging.  This time has its own unique list of excuses, I guess.  That's what this post is about.

Excuse #1: I'm now a general contractor.

When we bought the house back in June of last year, it was considered a "livable fixer" with only 2 real bedrooms, a kitchen that needs an intervention and a (yet-to-be-discovered) river running through the basement.  I have been making it my business to get all these issues fixed.

With the help of some friends, we've managed to get the dying furnace out of the middle of the basement and replace it with something with air conditioning that's more efficient and out of the way of everything else.

From there we celebrated on the 4th of July and called a team of professional waterproofers the next morning to fix the newly-discovered river.  We were pretty shocked when they told us they could start tearing apart the basement in less than a week.  That put us in a mad rush to complete the demolition, preparation and to move Elisha upstairs from his temporary spot to nowhere in particular.

Basement waterproofing took three weeks and immediately I got put in the role of framing walls (it's only been 20 years, so why not?), repiping the house (it's only been 80 years, so why not?), redoing the basement electrical (it's only deadly, so why not?), ductwork (it's only...ok, you probably get it), drywall, flooring and trimwork.  If I forgot anything, I don't want to hear about it because it's not in the budget.  Here's some of our progress so far:

Excuse #2: WFH w/Kids

One thing they don't explain in the employee handbook of a company that is 100% work from home is how to handle summer break.  The kids have been running around my office screaming and throwing stuff for seven weeks now.  Just kidding, I don't have an office.  My office is going to be right where the laser is sitting in that last photo.  

Maybe by Christmas.

Obviously, things have been pretty distracting at "work".

Excuse #3: Jr. Bible Quizzing

Elisha spent the first six months of the year as a Junior Bible Quizzer in the Oregon District and learned most of the New Testament book of Galatians and some of the book of Hebrews.  He worked really hard and--let's be honest: I worked really hard--to get through the year.  The poor guy had so many distractions between January in June, but he finished his first year as Rookie of the Year for the state of Oregon.  Good job, Buddy!

Excuse #4: Cancer

This is the always excuse.  The good news is that the brain scans I referred to in my previous post came back very good.  Everything from the conventional surgery is gone and the site from the gamma knife surgery has had noticeable shrinkage.  That area is expected to slowly go away.

The real challenge this summer has been the chemo.  Anne-Marie has been on the chemo pills Xeloda and Tykerb for about three months now and the side effects seem to have a cumulative effect.  Anne-Marie is very sick on a weekly basis, often for stretches of a few days at a time.  Scans are due within a few weeks, but the date is pending.  We hope to have results by the end of September.

We did sneak away for a quick date night at the end of June to enjoy Anne-Marie's favorite restaurant ever.  We don't get out much, but we try to make it good when we do.  So--and I'm sure she would never say this herself--if you see her in person, know that Anne-Marie very much prioritized the event on her calendar.  

Just a few more weeks of summer left! I think we might celebrate by staying home and building some walls.

Thursday, June 07, 2018

May 2018

In our house, everything happens in May.

For instance, May 10, 12 and 18 are diagnosis days 2 (2012), 1 (2006) and 3 (2016) respectively.  When diagnosis day 4 came in January of this year, it was a huge shock, not just because it was shocking, but because it's supposed to happen in May.

This year's May in particular started with Anne-Marie's Xeloda/Tykerb treatment going not so well.  If you've been following this story, this was no surprise.  As I posted a few weeks ago, Dr. Smith reduced Anne-Marie's dose of Tykerb by 20% and we went away hoping.

Over the next week, things started to improve and Anne-Marie's strength started to return.  We went to church as a family on Mother's day and by the time we hit the 19th, Anne-Marie was able to attend Ethiopian Orphan Relief's annual charity auction (both times in a wheelchair, but still).  We had such a great time, I forgot to take pictures.  Whatever.  I got a cool painting at the auction and Anne-Marie was celebrated with all the other great moms at church.

My cool painting from Ethiopia
The 24th was the revised chemo plan follow-up with Dr. Smith.  Let's just say he was thrilled with the progress made inside that time.  This means the plan is a plan for now.  The side effects are still a battle, but if we can prove this is working, we will stick with it.  It's a good thing the chemo plan worked as well as it did because the kids year-end concert for school was the night of the follow-up appointment.  The kids did great.  (Tiny video of Mariah below.)

But that was just one side of things because it was Anne-Marie's birthday week.  I think she had four different birthday parties.  Tuesday she was at a friend's house for a birthday lunch, Thursday she was taken out for lunch and dessert, Saturday was a giant birthday breakfast for friends and Monday another big breakfast party with family.  Yeah, she's spoiled.  She even got a song this year, because being in love is worth looking like a dummy.  (I actually sing more than most of you realize.  Happy 39th, Anne-Marie.)

I'm sure there's a few other things that happened last month, but I'm tired of thinking of stuff and so I'm going to stop typing now.  Next for us is an oncologist consult on 6/13 to track the progress of the chemo and a brain MRI on 6/27 to better understand the effectiveness of April's gamma knife surgery.

Monday, May 14, 2018

Tykerb's 2nd chance

Because of Anne-Marie's previous experience with the Tykerb chemotherapy pill, trying it again is something we never thought would happen.  The pill had been discussed multiple times in the last six years and always comes up when the "medications to avoid" (is that what it's called?) list gets read off/written down at the hospital.

"Tykerb?  What's that?"
"Oh it's a chemo pill."

We've had the conversation dozens of times.  No one knows what it is unless they know what it is.  Then they know.

Now six years after it was prescribed by Dr. Korde from SCCA, Dr. Smith decided to prescribe it, in combination with Xeloda, hoping for the best.  Well, so far, it's been hard, but bearable.  Anne-Marie had a tough few days to start--and even went off it to recover for a day--but she has somewhat normalized with the help of the doctor.  Dr. Smith gave Anne-Marie the OK to cut the prescribed dose of Tykerb down by 20%.

This is good news because that means we have an actual treatment plan.  If Anne-Marie can continue to tolerate the treatment we could have a "routine" for the next several months.  The stomach sickness and queasiness has been hard, but being a month (and two months) post surgery has brought her strength up and allowed her to be on her feet more throughout the day.

She will continue on the Xeloda/Tykerb (for the brain) and Faslodex (for the lungs) until the team of doctors say otherwise.  Scans of the bones will be quarterly and a brain scan will happen in about a month.  This should tell us a lot about whether the treatment is effective.