Jason's Untimely Thoughts

I’m writing this for Adelaide and Jack, trying to put the story of Sarah’s carcinoid fight in one place for their benefit whenever they’re ready to read about it.  Don’t want to write it, but need to while I can.

In May of 2006, Sarah, Adelaide, Jack, and I were in Malden visiting Papa Bill and Grandma Nancy while Jan was visiting from Switzerland.  Adelaide would have been 3, Jack not quite 1, at that time.  Early on the morning of May 7, Sarah began complaining of stomach pain.  She tried to sleep through it for a bit, but then woke me stating she needed to go see a doctor.  While getting up and around, she got sick and was obviously in a lot of pain.

Bill & I debated driving Sarah to Poplar Bluff ourselves versus calling an ambulance, eventually settling on going to the ambulance shed directly (it was just a few blocks away and we were already at the car).  We arrived at the ambulance shed and woke up the workers.  After a few minutes, Sarah & I were in the ambulance headed to Poplar Bluff, while Bill followed us in his car.  Mom & Jan kept the kids in Malden.  The ambulance driver wasn’t messing around, we arrived very quickly, just as the sun was coming up.  We killed a bird on the way over there, when it hit the ambulance – a story which I thought would eventually become funny but didn’t.

At the emergency room in Poplar Bluff, we arrived just prior to shift change.  This meant it took a while for the doctors to get to her and caused some confusion.  I guess it really meant the first group did their thing, asked their questions, then the shift changed, the second group repeated.  Sarah was in more and more pain, which they finally helped her with.

Ultimately, the pre-surgical diagnosis was a perforated stomach or intestine with the need to do surgery to repair that perforation.  They moved Sarah into the surgery room and moved me to a normal hospital room, shared with another lady, to wait.  After a couple of hours and scarfing down some breakfast/lunch, a nurse came to tell me the doctor would be visiting me shortly, but wanted to meet in another part of the hospital.  So I went to that area, which was completely deserted.  (Should have been obvious they were planning on giving me bad news and didn’t want to do it in front of another patient, but I was oblivious to the clues.)

Dr. Gieselman, the surgeon, then showed up to tell me there was no good way to deliver the news and that he’d discovered Sarah had a tumor in her stomach, had felt around some and found more in her liver, and at this time he believed she had stomach carcinoma.  (Or that’s what I understood and was the reaction of the nurses, it really turned out to be carcinoid, not carcinoma, a very important distinction, from the pathology from surgery.)

While they prepared to move Sarah to a normal room, I called her family to let them know.  They all came from Columbia to Poplar Bluff immediately.  That night, I stayed in the room with Sarah while she came in and out of consciousness.  Her short-term memory was gone, as they told me it would be, so I’d explain where she was, why she was on a respirator, etc.  Eventually, I started to also tell her about the diagnosis and that we were going to figure it all out.  After 4-5 times of that, she started to remember.  While she could only barely communicate because of the medical equipment, it was clear she got it, was scared, but was also handling it well.
Over the next several days she recovered very well.  The intubation came out after 2-3 days, she was able to walk around, and received lots and lots of visitors.  Mentally, although we were all scared, everyone handled everything pretty well and we started to make progress.  The kids, who had been with Nancy in Malden for all this time, came to visit and then Nancy & I took them to Columbia on Thursday, May 11, to help Adelaide get ready for her dance recital that weekend.

I returned to Poplar Bluff on Saturday and Sarah was released from the hospital on Sunday, May 12.  We drove to Columbia very slowly and talked through the news, the scenarios, and the fears.  Two stories I’ll always remember from that conversation – talking about the randomness of events and how things could be different, and I point out that we all could have been in a car wreck on the way to Malden.  (Didn’t go over very well.)  The other was Sarah very vividly pointing out that she wanted to live to see Adelaide go to kindergarten, to see Jack start walking and talking, etc.

From there, we were back in Columbia and begin learning much more.  It finally hit me that we weren’t talking about carcinoma, but carcinoid, so I became much more educated and we started to investigate options both in Columbia and elsewhere.

One of our first stops outside of Columbia was with Dr. Lowell Anthony in New Orleans.   We went down there in June 2006.  Dr. Anthony gave us a pretty grim prognosis.  There was too much tumor in Sarah’s liver for them to do anything surgically, so he’d recommend some other treatments.  His main goal would be to give Sarah five more years, continuing to reevaluate everything as we went.  This was a similar story to what the surgeon in Columbia had told us.

Already scheduled, we also took a trip to Baltimore to visit a surgeon at Johns Hopkins, Dr. Michael Choti.  One of the best things to happen during this was Dr. Choti’s insistence on looking at new CT scans, which we had done at Hopkins.  Those new scans showed significant changes in Sarah’s liver, with reductions in tumor load everywhere – or maybe the initial scans were just not very good – or a combination.  Regardless, we were given a significantly different prognosis then.  Choti also recommended against surgery, but for different reasons than we’d heard previously.  Based on the first scans, the first doctors believed Sarah’s liver was too involved to be helped surgically, basically.  Based on the new scans, Choti believed that the tumors were scattered enough that he wouldn’t be able to get them all out, but they were also small enough to not cause significant concern in the short-term.  This was very good news.

Over the next two years, with the good help of our local physicians, we monitored every sign and scan extremely closely.  Sarah attended two national carcinoid physician-patient conferences and I accompanied her on one.  We continued to read everything we could and learn whatever we could.  Throughout, the tumors either remained consistent or slightly smaller, and the advice from national experts was surgery was the only cure, when you could go in and remove the tumors you should do so.

In the spring of 2008 our local surgeon, who we had only seen that one time in 2006, reviewed the case again and informed us that he now believed he could go in and remove all of the tumors.  All of them.  While skeptical and nervous, we proceeded with some initial testing and began seriously considering surgical options again.  Ultimately, we decided to visit again with the New Orleans group for their opinion, this time visiting Dr. Eugene Woltering.  At that visit, in May of 2008, we met with both Dr. Woltering and Dr. Philip Boudreaux, the surgeon who would be operating.  They reviewed everything we were asked to bring and recommended surgery on Sarah’s liver, probably removing lymph nodes also, and exploration from there to find/remove any other tumor they could.  We ultimately scheduled this surgery for June 26, 2008, at Ochsner Medical Center in Kenner, Louisiana, just outside of New Orleans.

While we were both nervous about the surgery, it fit the plan that we’d heard all along.  Absent the stuff just disappearing on its own, which had always been Sarah’s hope and one I now wish we’d have given more time, whenever someone could go in and remove the tumors, that would be the plan.  Although I’ve had people tell me they think Sarah knew this was coming, I simply don’t believe it.  If for no other reason than she’d have never willingly left the kids.  Never.

The afternoon of June 26 brought extremely good news.  Dr. Boudreaux and Dr. Yi-Zarn Wang performed the surgery and were clearly pleased with the results.  They had removed absolutely everything they could find, didn’t really find as much as they had expected to, and all signs for a recovery were very positive.

There were considerable peaks and valleys while we were in New Orleans.  But, things looked good enough that Nancy & Bill took Adelaide & Jack back to Malden and Sarah’s parents and brother each returned to Columbia for brief periods, as we were all confident she would be home soon.

Ultimately, of course, things changed.  I’ll say I woke up the morning of July 7 still believing she was coming home.  My belief, based just on watching things in New Orleans daily and watching Sarah recover from two births and the previous major surgery, is this:  Sarah recovered more slowly than people expected.  That was partly due to her requiring more pain medication than normal.  The first day or two, she was unable to take deep breaths because of the pain, which was never under control.  Ochsner had (may still have, I don’t know) extremely limited ICU visiting hours, which made the situation worse.  The minute I saw Sarah the next morning I knew she was still in pain, information the doctor did not have.  Despite getting the pain under control, Sarah had likely already developed lung problems, very likely including an MRSA infection at that point.  Whether MRSA was in play at that point, it definitely was later in the week.  She was moved off the ICU floor for one night, but breathing problems became considerably worse over time.  Those breathing problems continued to worsen, no matter what efforts were tried, until we lost Sarah on July 7, 2008, at the age of 36 years and 1 month.  She died in the early afternoon and I was with her pretty much that entire day, or at least as close as I could be considering the circumstances.  Sarah’s Mom & Dad were also in and out as much as was feasible.

Sarah’s mom, dad & I returned to Malden immediately, arriving early the morning of July 8.  I went to bed with the kids and told them the news after breakfast that morning.  I called as many of Sarah’s friends as I could manage and responded to text messages and emails as we drove from New Orleans to Malden.   The outpouring of love and support was genuine, generous, and unbelievably widespread.  Everyone was in pain and missing Sarah.

Adelaide was 5 at the time, just preparing to enter kindergarten that fall.  A very bittersweet thing, given the car conversation earlier.  Jack had just turned 3.

From then until now, the kids only speak of missing mom, of things she liked or the way she would do certain things.  I fully believe Adelaide is trying to protect me, much as I’m trying to protect her.  I think Jack just misses his mom, but doesn’t understand the whole thing.  They’ve neither one never had a break down, although I almost wish they would.  The same could be said of me, however, minus an hour or two in the hospital in New Orleans.

With perfect hindsight, of course I’d be vehemently opposed to that surgery now.  Sarah was on course to be perfectly fine for another few years at least.  On the drive to New Orleans we discussed how we’d made it to seeing Adelaide start kindergarten; this surgery was to make sure we saw the kids’ children start school.  But, given everything we knew to be true and the considerable advice from considerable experts we heard everywhere we went, the decision to have surgery was sound.  It just turned out wrong wrong wrong.

The story isn’t complete without mentioning the continued outpouring of love and support and tributes to Sarah that has occurred throughout the ordeal.  From people taking care of us immediately after the diagnosis to the numerous memorials and tributes that continue to happen, it is clear that Sarah did win, as I’ve always labeled these posts.