Notes on the 15th Surgery

On Wednesday, December 2, 2020, Surgery 15 was first call.  The front door of the hospital wasn't even unlocked.  We went to the back entrance of PeaceHealth Southwest and checked in at 5:15 AM as the first patients of the day were slinking in.

Check-ins for surgery work a lot like those for international flights.  The watchword is always to be early so you can wait around for a very long time.  And we did, but for the first time, we were fully masked up and alone in the waiting room.  Pandemic protocols limited visitors to just me.  Just me and the wheelchair, of course.

Wheelchairs* at surgery work like international flights as well.  They tag them with your name and allow them to follow close by wherever you travel.  The patient can consider it their own version of baggage.  It followed closer to Anne-Marie than even I did that day.

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A few weeks back, Dr. Solti has let us know that the conventional chemo Anne-Marie was currently on would, at best, be 20% effective on the cancer we are now fighting.  She was adamant that we need to gain access to the brain and spine to make more progress.  That's where surgery 15 comes in.

When they tell you they need to "gain access" to the cerebrospinal fluid, they really mean they're going to drill a hole in your skull.  Officially it's called an Ommaya reservoir.  The neurosurgeon takes what amounts to a dome-shaped port, places it under the skin and connects it to the appropriate brain ventricle. This allows chemotherapy and hormonal therapy to get past the blood-brain barrier to kill the tumors in the brain and spine.  The entire process takes 60 minutes. 

Anne-Marie was out of recovery by 10 AM and neurosurgeon Dr. Modha came in to visit us early in the afternoon and let us know that we would be a very unique case of same-day brain surgery. Anne-Marie slept off and on for a few hours in the temporary room and we were home by four.

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The surgery was as straightforward as could be expected; the recovery has been anything but.  We've found in the last week and a half since the surgery things have not improved.  The radiation treatments from three weeks ago did relieve some of the pain, but Anne-Marie's mobility only decreased in the days following.  

Treatments fed directly to the brain and spine started the day after surgery.  They've been very short to administer and haven't resulted in many side effects, but--after three treatments--they also haven't helped with Anne-Marie's mobility.  

As of this week, she can no longer walk any distance without the assistance of a walker.  She's fallen several times since last Monday.  It's been frustrating every time and frightening many times.  

These last six weeks have changed our lives in so many ways.  I've become an expert in accessible living and Anne-Marie's become practiced in her upper body strength.  Now our prayer is to figure out how to survive this nightmare.

Chemo days through the end of the month are Monday and Thursday.  Thursdays only starting in January.

*You may have heard that Anne-Marie's much-loved Breezy Ultra 4 wheelchair was broken at the hospital.  (Also holding true with the airline analogy.)  This is true, but our guys at Northwest Health and Safety got us all fixed up.  Thanks, guys, for getting it figured out so quickly.

Notes on the 14th Surgery

It was 12 days after I had major surgery. The first seven of those days were on my back in bed. I had two days left of a 14-day liquid diet.

And the oncologist was telling Anne-Marie she needed brain surgery as soon as possible. She had spent the first 10 days after my surgery helping me get back on my feet. Then, on the 11th day, the lingering headache she’d been ignoring became too much.

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The 14th surgery has been the most empty time I can remember and as urgent as the brain surgery was, we were in no hurry. My recovery from surgery had been painful so far and--because of what happened two years ago--we knew what we were facing with another brain surgery.  Sleep and sanity were in short supply.

However, getting a surgery date on Presidents Day, February 17, allowed us a bit of breathing room. No dropping off and picking up kids from school due to the holiday, so we could just wake up and go to the hospital. Straight to the hospital, except Mariah became extremely ill an hour before we were supposed to leave. So now with only our son in the car (and daughter back home with Grandma) we were off. 

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It was a 10 AM check-in at the hospital.  Family and friends were already there to greet us and a group of us took a few minutes before the check-in to go to the hospital chapel and pray.  Hospital chapels are not generally set up for Pentecostals, but we managed to work through it without getting security called on us.  (Folks can get loud for sure.)

This is the 14th surgery, so I can tell you with assurance that a 10 AM check-in means surgery around noon.  But not this time.  Two dozen people came to see Anne-Marie that day and nearly all of them got a chance to come into short stay see her off before the procedure, because they didn't bring her back to the operating room until 3 PM.

The time waiting was emotional, frustrating, boring and extremely hungry.  Anne-Marie was on steroids leading up to the surgery to reduce the swelling in her brain, so she was ravenous.  I always make it my practice to not eat before surgery if they aren't allowing her to eat (which is almost always), so I waited an extra three hours for the mid-op cafeteria meal like I'd had 13 times before.

But it didn't end up as a cafeteria meal.  Without being asked, more than one family had decided to drop by food in the waiting room for the dozens of friends and family gathered.  They had taken over about 25% of the first floor of the hospital and made it into a buffet.  Our tribe is pretty solid.

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The neurosurgeon had told us in very specific terms that the area of the brain where the tumor was growing was the one that controls speech and mobility, so I was pretty freaked out.  But I was so hungry, I came down the stairs anyway because I heard there was food.  Fundoplication recovery doesn't allow for very quick consumption of anything, so it became a difficult task trying to eat without rushing.

I managed to--no exaggeration--choke through the food and greet everyone who had been kind enough to come to the hospital and wait all that extra time.  The kids went off to the sitters and I looked at the status monitor and realized the procedure was already nearing completion.

Hospitals have changed so much since we first started this journey that now you can enter a special code on their website to see how much time is left on a surgical procedure.  You don't even have to be at the hospital.  So instead of the hours sitting nervously in the waiting room like I did back in the mid-2000s, I got to walk back upstairs with a 15-minute warning and wait for the doctor to come to me.

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Dr. Modha appeared a few minutes later in the main surgery waiting room and gave us his report.  He said that the tumor was where they expected it to be, but it was "reaching" to take over more of the brain tissue.  Because of the critical placement of the cancer, he stopped extracting once he thought the risk was too great.  Doing this made him question the margins.

Also, the incision location had to be changed on the fly to get better access to the tumor, so Anne-Marie now had been shaved and had 12 stitches on the back of her skull.  

A follow-up MRI was scheduled for the next morning to look at the changes in the brain and to hope for a reduction in swelling.

That report was below mediocre.  I didn't want to show how disappointed I was, but what if they didn't get it all?  I'm pretty sure the doctors don't look at it the same way I do.  As a success or failure.  A win or loss.  They see the whole picture and realize the extremity of the situation while balancing it with the limitations of treatment.  I guess that's why I'm not a doctor.

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Anne-Marie was in recovery, so I decided it was really time for my cafeteria meal.  Brian, Mike and couple others decided to join me, so we went off to the place where option #1 is always chicken strips.  We all talked to pass the time until going up to our new lodging in ICU.

ICU at PeaceHealth Southwest's Firstenburg Tower is the nicest I've ever been to.  ER's and ICU's are nothing like whatever you've seen in a movie.  The walls in ICU are made out of granite, with the exception of one, which is made of glass.  I guess, that way they can "see you".  

The next morning's MRI results came across more positive than the post-surgery report: all major cancer was removed with any remaining at the microscopic level. (more on that later) Swelling had already reduced significantly lending to the theory that the fluid and swelling from earlier scans was caused by the irritation of the invading tumor.

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One thing I learned about ICU in 2014 is that they don't like letting you sleep.  Every hour on the hour "neuro checks" were happening with medication on top of that.  Anne-Marie was just as hungry as before the surgery but now trying to fill up on ice chips and apple juice.  So, the first night was miserable.

By the next afternoon we moved into a "standard" room one floor up in the tower that competed with the suites in the family birth center.  (Just kidding.  No rooms at any hospital compete with the ones in the Family Birth Center.)  It was nice and even had a long bench that made into a bed rather than a pleather recliner for me to sleep on.

The view from our room

Dr. Modha came to our room and told Anne-Marie she was very brave and that what he observed in the operating room let him know that surgery was truly the only medical option that was going to help her situation.

Along with that, all kinds of visitors came and went and we're grateful for them all.  Some even brought me cookies.  But much of the time was just Anne-Marie and I in that room.  Occasionally I had to run to get more chicken strips, but mostly I could just help her eat her applesauce and oatmeal and just let her rest.  All was out of our hands and out of our control.  The scary part was over and the hard part hadn't started yet.

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Anne-Marie was doing so well that they discarged us on Wednesday, just 48 hours after her major brain surgery.  Now she's been home for two and a half weeks.  Even though she hasn't been out of the house for any reason other than follow-up visits to the doctor, she is doing very well and can get up enough to make her own meals and look out at the birds.

All kinds of visitors have come and gone in that time too, but mostly it's just been us.  The view isn't as far-reaching, but I'm still just trying to help Anne-Marie during this time that's out of our control.

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.

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.

Notes on / results of the 1/10/17 biopsy

(I love how I have to start the post by specifying which biopsy I'm talking about.)

The biopsy to figure out what was happening near Anne-Marie's collarbone was the morning of Tuesday, January 10. Actually, not really. It was scheduled for the morning but was moved to the afternoon at the last minute.

We checked in at 1:30 only to find out that the OR had been full all morning with emergencies sent over from trauma. So almost four hours of waiting in short stay put Anne-Marie getting wheeled back to the OR around 5:15 PM.

I sprinted to the cafeteria to eat but the surgery was so short I got the call from Dr. Storm before I was finished eating. Two suspect lymph nodes had been removed. Everything went fine, but as usual, recovery and discharge took another two hours.

We checked out at 8 PM to blizzard-like conditions. Weather forecasts vastly underestimated one of the worst winter storms in modern Portland history and we could nearly have gotten stuck at the hospital five miles from our house.

Thankfully we still have a gigantic SUV and we slowly headed toward our house. Anne-Marie hadn't eaten since breakfast, so she requested some food. The people at Arby's looked scared to death as they saw snow blowing sideways through the windows. I wanted to tell them to just go home. After they made me that Jr. roast beef.

It took nearly a half hour to drive the five miles, but we made it home around 9 PM. Our kids--stuck with the sitters in traffic--made it home an hour later.

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All of that process got us to the post-op on Monday, January 16. The results? Nothing.

They didn't find a thing. The lymph nodes may have been inflamed from a virus Anne-Marie had around Christmas. The remnants from whatever it was were still there in the OR, but it was NOT cancer.

So we're thankful. It means we fight another day. And, yes, we know in our in the back of our minds that Dr. Smith will probably schedule us to go in for a lung biopsy (aka get stabbed in the chest).

Right now, we're focused on going to Disneyland in a few days. I think cancer can wait until we're back.

Notes on the 12th surgery

Exactly eight years and 11 months ago I wrote my first blog post in this series.  This post is the last.

Surgery was scheduled for the late morning of Tuesday, April 7.  We made the decision to stay two nights in Seattle for the procedure (Monday through Wednesday) to give Anne-Marie a good night's sleep before and avoid a difficult rush hour drive home to Vancouver right after being discharged.  Also--though it may sound strange--we wanted to take time to celebrate this moment by being in a quiet place together for a few days.

Surgery went well.  Textbook well, really.  This time took a little longer since they were concerned about (literally) wrapping every last thing up.  I waited and walked the halls of the UWMC one last time till my call came.  An extra hour of surgery and an extra hour of recover meant I was really glad I reserved an extra night of lodging in Seattle.  We made it back to our room around 6:30.

Maybe it was that it was a lesser procedure that made Anne-Marie energized and cheerful that evening.  I believe it might have been more that it was the last procedure.  Anne-Marie rested well enough that I snuck out for coffee with one of my friends from the area for a few minutes.  She woke up ready for the ride home.

This time the home side of the recovery was a little different because the kids weren't there, but I was.  Usually during the days following surgery, it's the opposite.  The kids were gone because Grandma had them for Spring Break.  I was home because my workload at the office is so large that my boss offered me an unrefusable agreement.  Because I was needed at least 10 hours a day, but only wanted to work eight so I could be at home as much as possible instead I could work from home and attend to Anne-Marie any time she needed me...I just needed to squeeze about 25 hours in before I got back on Monday.

So I brought my entire station from the office home and set up camp for five days on the dining room table.  The agreement worked out fantastically.  Why didn't we think of this before?

The kids came back on the weekend and I went back to work on Monday.  Yes, the week after surgery was a struggle with Anne-Marie jumping right back in to the busy schedule of school and home and a husband who works a lot and even more than a lot lately.

Now that it's been a few weeks, we have made our way back to our semi-normal routine of controlled chaos.  Knowing it won't be bogged down with surgery ever few months is the most incredible, freeing yet unfamiliar feeling.  As I said before: What am I going to do with my vacation time?  My sick time?  My unpaid leave time?  My cache of tired babysitter goodwill?  My hospital cafeteria fund?

I dunno.  Let's find out.

Notes on the 11th surgery (thanksgiving)

Surgery 11 was more predictable than this year's previous three procedures.  The main surprise was that they asked us to be there early in the morning.  (Usually the early appointments are reserved for those that are having major operations that last several hours.)

We needed to be in at 7:30, so we spent an extra night at in the South Lake Union neighborhood at SCCA house (Awwwwww.  Too bad!)  Serious Pie and a quick trip to the most urbane Goodwill and it felt like we were on vacation.

The next morning came very quickly and even though prep took 2 1/2 hours, Anne-Marie was off to the OR what seemed like far to early in the day.  The procedure was performed in a better-than-textbook 70 minutes and Dr. Colohan came in to talk to me.

She told me that all went well and that Anne-Marie was doing fine.  She would be out of the recovery room in an hour.  She told me that next surgery would be the last one.  THE LAST ONE!

Anne-Marie is almost completely back up to speed after two and a half weeks, an easier recovery than the surprising struggle we had in July.

Anne-Marie has had six surgeries this time around inside 24 months, with an extra hospitalization thrown in there for fun.  Four of those surgeries have been this year: a personal record.  In the middle of the four we moved 120 miles.  And by the time we hit next spring, we'll be celebrating the entire chemo-->invasive cancer-->radiation-->reconstruction-->recovery process.  We're almost back to where we were in 2012!  This is great news.

At the same time we're going to have to learn how to go on after this.  We'll have to figure out if we want to leave our partnership with SCCA and the U of W and connect with a team of doctors here.  We'll need to figure out how to build Anne-Marie's strength back up.  We'll get to figure out what to do with all the extra vacation time I'll accrue.

We'll figure out how nine years ago life didn't stop, it just changed a lot.  Thank God for the path ahead.

Notes on the 10th surgery

The 10th surgery was supposed to be identical to the 9th: reconstruction corrective grafting stuff that's a little complicated and personal for here.  It didn't quite turn out that way.

Apparently the surgeon--who wasn't satisfied with the previous surgery's results--decided to go to more extreme measures.  After the surgery was through, we figured out how much of a difference that made.  Anne-Marie has been much more sore these past two weeks.  I once again took her to SCCA House the first night.

Moving an extra two hours away from the hospital was no favor to Anne-Marie when it comes to driving home after these things.  We found a narrow window between rush hours the day after surgery and raced home.

The first week we had to call in a few favors for the kids to be taken care of for a few extra days.  It all worked out and by Friday of surgery week, Anne-Marie was up and doing things again.  Last week, which was a full week removed from the date of the procedure was pretty close to a normal week.

Post-op is Thursday and surgery 11 will be in the fall.

10th surgery is today

We've made it to the double digits!  Anne-Marie will go into surgery today at noon.  It's a very short procedure that will be done by Dr. Shannon Colohan at UWMC and will have us out of the hospital by noon and home tomorrow.

Full recovery will take about two to four weeks.

Notes on the 9th surgery

Surgery 9 went so fast, I hardly made it back from the cafeteria.  Dr. Colohan met me in the waiting room just 75 minutes after I watched them wheel Anne-Marie away.  The procedure went well.  The real story here is the recovery.

Because the surgery was a midday outpatient procedure, we were discarged from the hospital right at rush hour.  We decided that we would stay at SCCA House for a night to allow Anne-Marie to have a solid 18 hours or so in bed before attempting a long car ride.  Plenty of comfort food eateries in the immediate vicinity assisted the recovery greatly, along with the very quiet and dark room.

The peekaboo Needle view from SCCA house

We returned home the next morning, Tuesday, April 15, to continue with the recovery.  Our friend, Melissa, helped us out with the kids for a few days.

Although it was a very short surgery to correct/adjust the original DIEP procedure from January, the pain and stiffness lingered for a couple of weeks.  Anne-Marie didn't drive or leave the house for two weeks.  She was fairly well recovered by the time I took her to here post-op appointment on Thursday, May 1.

Dr. Colohan has informed us that the complete series of surgeries will be larger than we originally anticipated.  We had hoped that it would be a series of three surgeries spaced three months apart.  Now it appears that it may include five operations, with the third in mid-July and taking place every other month until the end of the year.  Pray for us.

9th surgery is today

Anne-Marie goes back to surgery today.  This one is scheduled corrections to January's DIEP flap surgery.  Everyone who goes through this level of extensive reconstruction has "follow ups".  We are almost certainly headed for another in July.

8th surgery epilogue

I intended to follow up February's post on January's DIEP flap surgery with details on what happened after the day of surgery.  Now here we are in April.  So much happened inside that time.  Here's a little bit about it.

The stay at the hospital was open-ended like so many of them recently.  Originally the estimate was about four days of recovery.  It ended up being six.  After two days in ICU (with the creepy hospital noise), we were moved into the general wing and things slowed to a crawl.  Anne-Marie's pain level versus her strength level were way out of whack and she quickly fell off schedule.  First one day and then two.

We tried to take our time and not rush to get home.  Anne-Marie struggled with her appetite.  I had more trivial issues like running out of clean clothes.  By the time we hit Friday, Anne-Marie was starting to eat and I ran to the nearest shopping center to buy anything I could find on the clearance rack (with slightly hilarious results).

On Saturday, January 11th, we left the hospital in the late morning after pressuring the doctors to expedite the process in order for us to avoid the Seahawks game day traffic.  We snuck through just in time.  My mom had rearranged our house to "recovery configuration" while we were away, which is how it's set up even still.

It had been six days in the hospital, but that only accounted for the first of six weeks of painful recovery.  Progress was slow and the work it required was tedious and frustrating.  The pain was intense and the fatigue was frustrating.  Anne-Marie couldn't stand up straight for over a month.  Concerns about infection came and went and very, very gradually, things got better.

During that time she only left the house once: for her post-op appointment.  Various family members took care of the kids until early February, when we left them at home with Anne-Marie for the first time (and Elisha and I had our "parade experience").  The first big outing was the day after Valentine's Day.  We went to get Thai food and window shopped for about 20 minutes.

Unbelievably, that was now two months ago.  We are now on to the next challenge...

Surgery: The Epic Miniseries

When Anne-Marie had her original DIEP flap procedure in January, we knew that it would likely be the first in a series of surgeries.  Recently, the doctor has informed us how this is going to work.

The first surgery--as you know--was a giant procedure that took all day and resulted in a week-long stay in the hospital.  The secondary procedure will be a simple outpatient surgery that will (hopefully) involve a few days of recovery.  This will happen on April 14.

The third surgery will be sometime in July and will be similar to the second.

Anne-Marie has been back to normal for a few weeks, but still deals with some new soreness/stiffness unique to people who go through really extensive reconstructive operations.  I'm doing my best to help her through this and not forget that she can't do the things that she could before.

I'll also be assisting her during her "reward" weekend trip to Seattle for enduring the recovery process.

Notes on the 8th surgery

It's not like we haven't been through this before.

The surgery team asked us to arrive so early that I just know it was in the 5 o'clock hour.  Exactly when it was has been forgotten.

This time I was prepared with four days worth of clothes jammed into my laptop bag.  I wasn't leaving the hospital until Anne-Marie did and the doctor said we'd be there four to five days.

Along with the projected length of stay, the doctor predicted a 12-hour-long procedure.  12 hours is over double the longest surgery that Anne-Marie has ever had.  Maybe we hadn't done this before.  Half an hour in the surgery waiting room with the most nervous people in America was enough for me when they called us back.  It was around 6:00 AM.

Prep time doesn't count against your 12 hours so the next hour was us getting told stuff we already know and working with Anne-Marie's (first ever normal) anesthesiologist.  Somewhere during the process the timeline was corrected to 12 and a half hours.

As always, parting was very hard, but this time not being able to say "seeya in a few hours" made it different.  At the same time, after having been through this so many times, the projected length of procedure is always wrong.  I've found that it's about 20% pessimism.  If they say three hours, it's usually two, including time in the recovery room.  Anne-Marie was taken back to the OR at 7:30 AM.  There's no way I could imaging not seeing here until 8 that night.

So there I was, alone, and with the whole day in front of me.  I brought stuff to read, along with my laptop to pass the time.  The first hour was spent as it has been the last seven times we've done this: in the cafeteria.  After that, I settled in for the long wait by posting a bunch of hospital humor on Facebook.  Hospital humor is like gallows humor, but not as dark.  And not as funny.

It went something like this:

 and:

And then there was this gem:

followed by:

I stayed in my good waiting room spot until lunch time (and that's when I wrote this post and this post.)  I knew I would get a call any moment from the Dr. Colohan with an update.  I waited two hours longer than I thought I would, but at 2:30 the surgery waiting room phone rang.  Dr. Colohan, who is Ontarian, said she was "just abuoot halfway through".  They'd been working to connect transferred tissue to existing tissue and blood supply connection required a microscope.  The extra steps set them back.

I still figured that the timeline was pessimistic.  Surely the second half would be without complication and go faster than the first.

My mom arrived with the kids soon after and we went to the family lodging at SCCA house (aka, The Cancer Hotel).  I took the kids to the playroom (because kids at SCCA house have their own playroom) and then took nap.  When I woke up, it was 6 PM.

We went across the street for burgers.  I was completely distracted.  The kids were thrilled because they got to eat junk and thought they were on some kind of vacation in downtown Seattle.  It was 7 PM.  Why hadn't they called me?  Panic set in.  I had to get back to the hospital.

8 PM found me back in the surgery waiting room with just two other people.  I think they were waiting for people that were in emergency surgery.  By now time was more than up, but the video monitor was telling me otherwise.

9 PM was exactly the same as 8, but I was joined by one other nervous spouse and a team of janitors.  Just after 9:30, the surgery assistant called to let me know they were "closing up".  Soon after the monitor confirmed this.

At 10:30, Anne-Marie left the OR after a 15-hour surgery.  

Dr. Colohan came out to talk to me about the procedure after 15 hours of what must have been the most intense labor and told me everything was fine.  Slower than expected, but fine.

An hour later, they wheeled Anne-Marie to the ICU and told me I could stay with her in the room overnight, which was completely unexpected.

I fell asleep at midnight listening to this:

Notes on the 7th surgery

This surgery was different in that I wasn't stuck in a waiting room.  This time I Anne-Marie had already been in the hospital for days and I was simply sent back to the hospital room to wait for the doctor.  What do you do when the welfare of the most precious thing in your life is in the balance?

I always go to the cafeteria.  I don't know what else to do.  Actually, that's not all I did.  I found the Quiet Room "chapel", which was a 12 x 12 closet-like room between labs and laundry.  Not the most beautiful I've been in, but definitely private and very definitely quiet.  I prayed for God to help my wife.

I believe He heard me because after going back to the room for an hour and reading, fidgeting and pacing, Dr. Colohan came in and told me the surgery went well and the Anne-Marie was in recovery.

Dr. Colohan revealed the late-night disaster, the infection and the surgery all were a result of the radiology mishap from February (outlined here in my post "What's Really Going On With Radiation").  It was disappointing news and the doctor's should have picked up on it before it progressed to the dangerous level that it did.

Anne-Marie was wheeled in an hour later and had a sleepy evening.

---

The next morning we were woken up by a team of four doctors that charged in the door and asked, "So: Do you guys wanna go home today?" 

Of course, our answer was "yes".  Anne-Marie was feeling much better and she was able to walk around and eat a little bit.  She was ready to be back in her own space.  After 80 hours of being stuck at UWMC we were discharged.

 

---

The first 10 days of recover were very hard.  Anne-Marie had limited mobility and was very tired.  Even today--5 weeks later--she is still sore and has pain moving her left arm.  We are hoping to gradually find our way through this difficulty as we have with so many others.

Emergency to Surgery: Part 10

After our short nap and having some fabulous pizza delivered, we went right back to the hospital.

Thankfully, my mom arrived soon after, picked up the kids and brought me a couple of changes of clothes, just in case things didn't straighten out as soon as we thought they should.

---

The next morning the doctor told us exactly how things weren't straightening out.  For starters, Anne-Marie would be there until at least Monday (two more days), and if the infection that was found in the CT scan didn't get better, they would send her into emergency surgery.

We begged them to give us more time to let the antibiotics kill the infection.  Surely by Monday things would regulate enough for us to go home.  Anne-Marie already had a surgery planned a few months later and didn't want to go to the OR for a completely unrelated reason.  Everyone on the medical team assured us they would keep a close watch on the infection problem to see if we could make it out of there without anybody getting cut open.

They moved, Anne-Marie from the special care wing to a regular room and told me I could have a rollaway bed to sleep on for as long as Anne-Marie was a patient there.  (That's more like it.)

From there, it was all about waiting and going to the cafeteria every couple of hours.

The antibiotics were effective throughout the day and then stalled that evening.

---

The next morning (Sunday), Anne-Marie's doctor, Dr. Shannon Colohan, sent us the message we didn't want to hear.  The antibiotics weren't going to be enough and Anne-Marie would need to go into surgery right away.  Because it was Sunday, the OR had an opening in exactly 45 minutes.

Of course we were a little shocked, but decided to go ahead with allowing them to physically remove the infection.  Our mental preparation time was shortened, but so was the dreadful anticipation. We knew that the surgery would significantly speed up, not only the removal of the infection, but--if the doctors were to be believed--the recovery process, as well.

45 minutes later, we were in the only people in an OR staging room set up for 40 patients.

Emergency to Surgery: Part 9

The staff at the special care wing of the University of Washington Medical Center had a lot more straightforward way of communicating.  First, Anne-Marie was probably going to be in the hospital for at least four days.  Second, they really didn't want the kids in the room.

Now, I was stuck in the cyclical problem of not wanting to leave my wife's side while we tried to understand what happened 12 hours earlier and not being allowed to stay by my wife's side due to the fact that we had our two small children with us.

In the middle of this, I called some of our family and let them know what was happening.  My mom decided to drive up from Portland to take care of the kids.  She would be there around 9:00 PM.  I also called the SCCA House to see if I could come there with the kids to crash for a few hours.  They were full.  I was considering getting a regular motel or sleeping on the sidewalk when they called back and said they had a cancellation.

The kids were getting restless and the nursing staff was getting irritated, so we decided to leave right away for our room.

---

SCCA House is only three miles from the hospital, so we got there quickly.  As soon as we got in the door the kids started running from one end of the lobby to the other.  There were two people in line in front of me.  (Hurry up, please!)

One person finished and I took the opportunity to pull Elisha off of a bench he thought was a pommel horse.  The next person was getting their room and I zoned out.  By the time I got my key I turned around and the kids were on the floor with two stacks of hotel brochures they'd thrown on the floor and were using as a deck of cards, shuffling them, fanning them out and then dealing hands to each other.  I picked up the brochures and set them in semi-order on the table then dragged the kids upstairs to the room before they started pretending the complimentary pens were cigars.

We fell dead asleep for two hours.

Emergency to Surgery: Part 8

Two more hours passed and it was 10:00 AM.  We went in to visit Anne-Marie again and they told us what we didn't want to hear.  She was going to be admitted.

They had already hooked her up to IV antibiotic treatment a few hours earlier and would need more than just a few hours of treatment.  I was pretty disappointed.  I guess I was hoping we'd get a quick fix and head home.  Now we were stuck in the ER waiting for them to assign us a room in the big hospital.

The kids were slightly refreshed from the breakfast and play session, so we somehow managed to make it through the next two and a half hours without many tragedies.  The doctor came back to inform us that we were officially being admitted and that we could all follow Anne-Marie as she was being wheeled to her room.  The nurses made some rubber gloves into water balloons to entertain the kids during the process.

It was 12:30 PM.  We had been in the ER waiting room for nearly nine hours.

Emergency to Surgery: Part 7

7:30 finally came and the cafeteria was open.  Going to the bathroom with all the stuff and the kids in tow was a struggle.  The cafeteria would complicate it even more.

"Plaza Cafe" (as it is known on the campus of UWMC) is one of the more mediocre hospital cafeterias in the Pacific Northwest.  I know because I'm an expert.  Dining out inside the Seattle city limits is usually more expensive, but you'd think that the hospital cafeteria would be in some kind of exception bubble since no one really wants to eat there.  At Plaza Cafe, they charge full price.

The kids were thrilled that I got them that I said they could get a donut and excitedly watched as their father stumbled with the donuts, eggs, bacon, juice, bagels and anything else money could buy to a table as far away as possible from any of the other involuntary customers.  The kids chowed it all and then began running laps around the room.  People just stared at them, half in shock and half indifferent.  They didn't quite understand.  Isn't there a Sawyer Brown song about this?

UWMC doesn't have any kids' play areas inside or out, so the kids convinced me to let them play outside in the outdoor seating area on the wheelchair ramp, just like Grandma did back in November.  While they were running up and down the ramp and shimmying down the hand rails, I decided to call my boss and tell him I "probably wouldn't make it in today."

As I got sent to voicemail, I heard a voice behind me:

"You kids, get back inside!  Where are your parents?  You can't be out here like this!"

I turned and looked directly at a nurse.  My kids were devastated, but intimidated by someone who came after them with so much force.  I hung up the phone and saw my kids glance my direction as the woman began to lead the kids back inside.  They were 10 feet away.  20 feet away.  I stared directly at all three of them as they were walking.  Now I was curious as to how long this was going to go on.

It wasn't that hard to make the connection that the kids were with me, but I guess if you've got certain preconceived notions, your brain keeps you from seeing the obvious.  30 feet away.  She starts talking to the kids,

"Where's your mommy?"

And I interrupt,  "I am their father."

Mariah answers, "My mommy is sick!"

Nurse turns around and looks at me and then them and says, "I'm sorry!  I thought you were just some guy on the phone."

"That's my daddy! Mommy's sick and in the hopsidal."

Nurse responds, "Well, she's gonna get better.  Sorry, I thought you were out here alone."

"It's OK.  We were headed inside, anyhow."

The nurse quickly walked back inside and so did we.  She was shaking her head.  I was shaking from delirious laughter.

I think I just got racially profiled.

---

Yes: the woman appeared to be African American.
Yes: she did make a snap judgment about how unlikely it would be that this Mexican guy could be father to two black kids.
Yes: she totally embarrassed herself and distressed my children.
No: I'm not going pound my chest, squint my eyes and quote MLK.

Why? Because it's just not that big of a deal. It's funny enough to blog about, but only serves (at best) as a weak illustration that prejudice works both ways and so many other things that everyone already knows.

She didn't mean anything by it. I repeat: she didn't mean anything by it. And--really--good for her for taking charge of her hospital. A little overzealous, but hey...

Emergency to Surgery: Part 6

The drive between Tacoma and Seattle is so much easier between three and four in the morning.  We got to the ER at University of Washington Medical Center at about 3:45 AM.  Apparently UWMC isn't set up for people to use the emergency.  Parking was a pain and the waiting room was barren.  For the first time since I remember at any hour of the day, no one else was there.  They must've all gone to Harborview.

Anne-Marie was taken back to the staging room right away, so we didn't see her as we were busy parking the truck.  The kids pretty much decided to make the waiting room their playground.  DVDs and the iPad were included in the rush packing, so I made full use of them.

I was still holding onto the hope that this was some kind of allergic reaction or virus.  The ER doctor didn't believe this to be the case at all and came out after an hour and said they'd ordered a CT scan. He believed it was either a blood clot or an infection from the November surgery.   (They soon ruled out the possibility of a blood clot.)  After we'd been in the waiting room two hours I decided to go see Anne-Marie, but remember, I had the kids and everything we packed with me the entire time.

I talked to Anne-Marie for a few minutes and we had to leave.  The ER nurses were very understanding of the kids for the short time they were in the room.  It was 5:45 AM.

We went back to the waiting room and struggled through two more hours.  The kids were falling apart from fatigue and began to do anything to stay awake.  They ran from end to end of the waiting room.  They took advantage of the circle of ugly armchairs on the perimeter of the room and used them as a hurdle course.  They watched the waiting room TV even though it was showing Cartoon Network.  They talked to strangers and complained about everything.  I was far too tired to care.

The kids and I made a friend in the waiting room named Graciella.  She was there because she'd just lost her baby because of a miscarriage.  She told me with sad eyes that she still trusted God and that's what we all had to do.  She was waiting there alone in the waiting room as someone drove to pick her up.  She talked about friends, family and all the blessings in her life and reminded me of the blessings in mine.  I helped her to the car when her friend came, watched them drive away and thought to myself, "She needs more prayer and encouragement than we do."