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.

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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.

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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

Saturday, March 31, 2018

What you can do to help

I'm gonna just bury this post in the weekend so people don't read it unless they really want to.  


People have been e-mailing, Facebooking, texting me asking how they can help. They're actually getting kind of pushy, so in order to satisfy you people, I'm writing this post for you.  You pushy, pushy people.


First off let me say that overall, we're fine on the basics.  We have eaten every day that we've wanted to eat.  The kids are struggling to understand, but still growing up like kids.  We still have the house.  And Safeway still delivers groceries.

Thankfully our family and friends are mostly local and we have people that have worked hard to organize all kinds of help. So don't think that we're penniless, friendless, hapless and hopeless when you act on any of the suggestions below:

Cook a Meal After Surgery #14: Surgery 14--to remove the 2nd brain tumor--is pending right now, but is expected to happen sometime in April or early May.  After we come back home from the hospital, Anne-Marie will be mostly resting in bed for a month.  It's been a pretty helpful thing for people to bring meals.  Sometimes Anne-Marie is on a non-solid diet due to treatments and sometimes not.  We have a good friend that has helped us organize all the details.  Email me here or contact me a different way if you have my info (especially once you hear that the surgery is scheduled) and I can connect you with the meal coordination.  (One note: we are non-dairy.  I think mostly because we're getting old, not because of some nutritional revelation.)  (One more note: I would ask visitors to coordinate in the same way. It's special to have a surprise visit, but now is not a good time for that.  Please let us know somehow.)

Send a Meal After Surgery #14: Same thing, but for people like me who don't cook.  Send a restaurant gift card or organize a delivery of food.  I guess Uber, Grubhub and eat24 deliver food from a ton of places now.  Once again: non-dairy; email me.

Pray for Us: I know not all of my readers are religious folks. But if you are, I would ask for your prayers. Read the things that I write here so you can know what to pray for.  If there was ever a time we needed divine intervention, it is now.
If you don't believe in God or don't believe God answers prayers, then I will pray for you instead. No. Just kidding. (Kinda.) But in that I will offer this greater point: We are not insulted at all by people that send us "positive thoughts" or offer similar encouragement.

Give to This Thing My Aunt Started: I am very hesitant to put this one on here, but my aunt started a GoFundMe account for us about a month ago.  It's been kept relatively quiet, but I thought I would mention it here.  Yes, we have pretty good insurance, but the whole truth is that co-pays are a bit of money. 
That's about as far as I'm gonna go with that.  If you have already given to your church, your favorite charity, your kid's band's bake sale, your whatever, you could think about it.  (don't even think about it otherwise)  This is GoFundMe page is 100% legit and was 100% not our doing (and 100% NOT tax-deductible as we are just private citizens).

Give to a Charity That's Dedicated to Fighting Cancer: Give to Fred Hutch or to Komen, both of which have had an impact on Anne-Marie's personal fight against this disease.  Or give to one of hundreds of other good, responsible non-profits that hate cancer even more than we do.  Many allow donations "in honor of".  Put Anne-Marie's name in there.  It's like giving us a high five from a distance.  It's tax deductible and you'll feel awesome.

Any of these things are super appreciated.  And our needs will likely change as time goes on and I'll write another post, but for now: We have been blessed with far more than we'll ever deserve.  Thank you all.  We love you.

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P.S.: Some have sent cards (thank you) or are maybe still wanting to.  Email me by clicking here for our home address.







Wednesday, March 28, 2018

Notes on the 13th surgery

The doctors always do a really good job making it seem routine.  "We do these things all the time." they say, "It's pretty straightforward".  So when the neurosurgeon gave us the routine spiel again, we looked at each other and rolled our eyes.  Actually, we didn't.  We waited until the consult was over and we were driving home to roll our eyes.

Dr. Ahsok Modha from Rebound Neurosurgery wanted to remove a brain tumor and inch above and an inch behind Anne-Marie's right ear and he wanted to remove it in a hurry.  Everything was happening fast.  In fact, the original date for the consult we were in was March 27th (that's yesterday).  Instead, the Rebound called us in on March 6 and recommended a surgery date of March 12, six days later.  We negotiated for 10 days later on Friday, March 16.


That's how we found ourselves at Legacy Salmon Creek Medical Center the next Friday morning with about 25 of our family and friends.  After the typical two hours of check-in, prep and preliminaries, Dr Modha came into the short stay room and asked Anne-Marie how she was doing.

"I'm kind of scared."

And then, for the first time in 12 years, a doctor gave up the routine.

"Of all the surgeries you've been through, this is probably the one you should be nervous about."

Finally, someone said the thing you're not supposed to say.  It's scary.  It's normal to deal with fear when you face something like this.  I know he probably shouldn't have said it, but I'm glad he was real with us.

After a three-dimensional CT scan to pinpoint exact locations in the brain, we were ready for the OR.

Family and friends were there--a lot of them--to support our family and we all went to the cafeteria as we waited the three to four hours that it was expected to take to get through the operation.  It only took two and a half for Dr. Modha to find me in the waiting room.

Anne-Marie was fine and recovering well.  The cancer was not as "deep" in the brain as they originally thought and had been completely removed.  After an hour and a half in the recovery room she was moved to ICU.

After three days of hospital food, nurse shift changes and visitors (37 total!), Anne-Marie was cleared to go home.  And that's almost the end of a story that ended up being routine after all. But the truly interesting stuff started happening just after we got home.

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Our post-op was supposed to be on the 29th (tomorrow), but--because of the staples used during the surgery and the pain they were causing--begged to be seen earlier.  They concurred and offered us an appointment a few hours later on the 20th.  The consult (and staple fix) ended up in us trying to decide on a surgery date to remove the second brain tumor.  The tumors had grown from the MRI taken 10 days prior to the surgery to when they were studied at the hospital on surgery day.  The removed tumor was lab tested as being breast cancer spread to the brain.

This explains why, when I asked for a surgery date of April 20, Dr. Modha turned down our request because he thought it was waiting too long.  We compromised and settled on a date of April 5, sixteen days later (and a week from right now).  This wasn't what we wanted to do at all, but we were trusting the doctor's judgment.  The 5th it was.

Trust, but verify.  We decided to call Anne-Marie's oncologist and radiologist to be sure they were ok with the quick timeline and that there weren't some other treatment details we were missing in favor of surgery.  By the time we hit the next Monday (two days ago), the radiologist had talked the neurosurgeon out of surgery, at least for now.  Instead we will be adjusting Anne-Marie's treatment plan per details we started working on today and will continue working on for the next week.  I will write another exhausting update when we get that figured out.

But for now, let's summarize:
  • Anne-Marie came through the first brain surgery just fine.
  • The cancer tested out as breast cancer that had spread to the brain.
  • The cancer was shown to be fast-growing.
  • We are NOT going to surgery on April 5.
  • Our family and friends are the best.