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.

Saturday, April 21, 2018

Urgent, not emergent (notes on gamma knife surgery)

That’s what Dr. Gotkowitz told us about Anne-Marie’s newly-scheduled surgery.

The options on the table were:

  • Conventional surgery (similar to what was done in March)
  • Stereotactic radio surgery
  • Gamma knife radio surgery
  • Do nothing and wait

The discussion of option 4 was what prompted the phrase urgent, not emergent.

“It will take three or four months before symptoms start to develop.”

I won’t get into the list of symptoms, but they made things seem pretty emergent to me. Gamma knife promised 90% effectiveness of conventional surgery and only 24 hours of recovery (compared to a month). Anne-Marie quickly made her choice.

Gamma knife surgery was scheduled for April 16 at a Providence Portland Medical Center and would be performed by our neurosurgeon, Dr. Modha and the radiation oncologist, Dr. Gotkowitz.


Gamma knife is in the sub-basement and only two or three people at a time are admitted each day. We got in at 6 AM. We were second (last) in line.

The process started with installing a giant clamp that was literally bolted to Anne-Marie’s head at four points in order to keep the head from moving during the procedure.  It looked cumbersome and painful. Plenty of local anesthetic was used to help with the pain.

Other than the clamp, the process was very relaxed. Brain scans were done first to map all possible issues. Everything on the scans came back looking great. No new tumors. No growth of tumors. No recurrence.

Anne-Marie returned to the room for two hours while the doctors formulated their plan for how to best remove the tumor with the gamma and then came and walked her back for the hour and forty-five minute procedure.

By the time they walked Anne-Marie back to her room, my brother-in-law Mike had joined us. The team of doctors came back and told us everything went perfectly, we sat and talked for an hour and then they sent us home.


In the almost week since the gamma surgery we have continued a conventional radiation plan (to ease pain in Anne-Marie’s bones), the kids have been in school and I went right back to work on Tuesday. Anne-Mare has dealt with a lot of headaches and fatigue since, but other than that is all right.

Dr. Smith changed course on the Tykerb chemo and is letting us wait until this coming Thursday. That’s the next big step.

Sunday, April 15, 2018

Gamma rays (and the return of Tykerb)

Orignally, we were scheduled for the 14th surgery--the removal of the 2nd brain tumor--on Thursday, April 5, but our team of doctors canceled that and presented us with a different plan.

On April 3, our radiologist presented us with an alternative to conventional brain surgery.  What they presented to us is a procedure called Gamma Knife Radio Surgery.  This procedure involves synthetically produced supernovas that force the decay of cobalt which gives off an afterglow of gamma ray photons.  Seriously.  Or something like that.

Not to be flippant, but this kind of science is most famously known for accidently turning Dr. Bruce Banner into the Incredible Hulk.
Gamma Rays
Well, science fiction has become reality and the gamma rays procduced by the cobalt in the gamma knife machine are used to burn up cancer cells in the brain.  200 beams of gamma are blasted from the machine through a special helmet that focuses the rays toward the exact location of the tumor and somehow misses all the other healthy cells in the brain (the team of doctors has assured us of this).  The effectiveness is estimated to be at about 90% of the traditional surgery.

Conventional surgery would involve a few hours in the OR, two days in the ICU and another day or two in the hospital beyond that with a month recovery at home.  Gamma knife involves three to six hours in the machine and then straight home to recover for one day.  You can see why we chose the latter.

By the time most of you read this post, we will already be at the Gamma Knife Center at Providence Portland.  The idea of being part of what seems like a mad science experiment* makes us both a little anxious, but after going through the last five weeks following surgery, we are willing to give it a shot.

We will take it easy these next few days as Anne-Marie recovers.  But there's two more things:

First, Anne-Marie has been place on a schedule of normal, traditional radiation that has nothing gamma about it.  She goes in every morning and will be for the next two weeks to help alleviate the pain from one of her ribs on the right-hand side.  Thankfully, we get tomorrow (the day of gamma knife) off.

Second, the advanced pathology on the first brain tumor revealed that it was not the same type of cancer as what was found back in early March.  In other words, the cancer has mutated in some places but not others, so our original plan of treating with Herceptin/Perjeta was scrapped and now the second plan of treating with Ibrance has ended.

The cancer we are dealing with can only be starved out by certain targeted chemotherapies, so our new option is a combined chemo treatment of Xeloda and Lapatinib.  Lapatinib is also known as Tykerb.  If some of you have been reading this blog for a long time, you may remember our horror stories (<<<click the link and read about it) of Anne-Marie's first attempt at Tykerb.  We were pretty shaken to hear that's what the doctors were recommending. 

The issue that is really driving the risky decision to try this chemo is caused by the blood-brain barrier.  There is a shield that your body has that protects your brain from any nasty invaders that also prevents treatment from reaching where it's needed if you have something that needs fixed.  Tykerb is the only approved treatment for this.  So it needs to work.

They are choosing to frame this attempt with the frighteningly-optimistic philosophy of "maybe this time will be different."  Considering the gravity of the situation, this seems like pretty sound logic to me.

Tykerb starts sometime during the coming week.  God help us.

*it's been around since the late 70's, so not really