Jason's Untimely Thoughts

As seems to be the case, anytime I send out a “Sarah update” to the fanbase, I subsequently have “need” to send out a new one. Occasionally not even relating to how much Mizzou rules or ku sucks (although both are implied). Thus and such, is this.

Sarah & I went to New Orleans earlier this week to meet again with that group (http://www.ochsner.org/NETS). This time we spoke with Dr. Eugene Woltering, and then with Dr. J. Philip Boudreaux. Woltering is Chief-Section of Surgical Endocrinology while Boudreaux is Professor of Neuroendocrine Surgery at their facility, which is affiliated with LSU (Geaux Tigers, but not you purple Tigers). They are affectionately known as “the fat man” and “Phillipé” respectively by Woltering, in his unusual, casual, Louisiana-redneck-sailor, random yelling out at nurses, speaking style. If there are physicians in the US that see more of carcinoid (or NETS as they now try to call them) than this group we are not aware of them. (In fact, Woltering’s 93-year old mother is a patient of his.)

Their recommendation was that Sarah undergo surgery. “How ‘bout next Thursday?” was a question. Not because of any urgency, just because they do a version of this surgery every Thursday and happened to have next Thursday open. While not going that full-steam ahead, Sarah does have surgery scheduled for Thursday, June 26, in New Orleans. We’ll likely be there a few days beforehand for testing, then will be there 7-10 days post-surgery for recovery.

The plan for the surgery is to remove Sarah’s gall bladder (because her drug causes gallstones (see my gall bladder scars from 2006)), remove as many of the spots in her liver as they can, use radio-frequency ablation (RFA) on any spots in her liver that are below the surface, remove any questionable lymph nodes, and then snoop around like crazy to find and remove any additional spots of tumor. They indicate that 50% of the time they find disease beyond where they’re expecting it based on pre-surgery scans, so that is a possibility which might modify that plan on the fly.

Beyond removing all the bad, they will then test that tissue for reaction to chemotherapy and other (anti-angiogenesis) drugs. This is important to both find out what does and doesn’t work, so any treatment decisions in the next 20 years are more informed. After those 20-years, we’ll assume they’ve found the cure and we’re done with these lengthy updates.

Several have asked me some version of “so is this good news?” with my honest answer of I have no idea. It’s certainly not bad news, just a decision we’re making with the treatment. The surgery is a big one, obviously, which comes with some risks and nervousness. Two weeks away from home for this kind of sucks. Doing it someplace that it’s a typical Thursday seems like a good plan though. Sarah remarked how nice it was to not have to explain Carcinoid, even to the receptionist at the facility, which is an extremely rare experience for her/us no matter where we’ve been. Every bit of everything we’ve read or experts we’ve heard or spoken with over the years have indicated that surgery is the preferred treatment, when possible. While she’s progressed very well, there’s always a chance that it kick starts. “God doesn’t let cancer sit still forever or the government quit sending tax bills,” was Woltering’s phrasing. So, surgery is the plan. Plus, since it’s June, that allows plenty of time for recovery before Adelaide starts kindergarten in the fall (and, ahem, football season).

Speaking of Mizzou ruling, Tiger baseball team won their first game of the NCAA tourney today. Think they play Miami tomorrow sometime on ESPNU. The JLB Pre-Season football ranking came out earlier this year, with the Tigers coming in at a clear Pre-Season #1. See the complete ranking here . Approximately 4,000 of us are planning a trip to Austin in October to watch the Tigers beat Bevo. Hooray football. And on a side note, screw ku.

p.s. 9 years ago (in about 7 hours) many of you were stumbling up the big hill at Les Bourgeois after a night of local wine drinking and Bistro revelry in celebration of the just exchanged Becking nuptials. A couple of you were injured during that challenging walk — you know who you are. A few of you were even lucky enough to continue the party with us in Brown’s hotel/conference room until the wee hours of the night. A couple more of you were lucky enough to have us drive you home around 3 a.m., Sarah still in her wedding gown, me still in my tux, since we had neither brought a change of clothes nor packed for the honeymoon, for which we departed at 6:00 a.m. The people sitting around me on that (bumpy) plane ride the next morning will never forgive you.

We should do all that again sometime.

My great-grandmother, Pansy Miller, died last weekend at the age of 103 (obituary here).  Unfortunately, Sarah & I were headed to New Orleans for doctoring so were unable to attend the services.  I know no one minded, but I wish I could have been there.  While her memory had failed her in recent years, she never failed to be pleasant to me nor to smile when I approached.

I’m one of very few who had the great fortune to not only know their grandparents, but also a great-grandfather, great-grandma Pansy, and her mom, my great-great grandmother “Grandma George” (Leora Davis Riddle).  Beyond Grandpa Zimmerman very rightly fussing at us for harassing his chickens, I don’t remember a single cross word from any of them.  Maybe I just have selective memory though.

Great people, all of them.  Work harder than I ever could, would do anything for any body, and many times have.  I’m lucky to have had them, and Adelaide and Jack will realize the same later on.

Today, May 7, 2008, marks the second anniversary of a crazy day. Right about now I was on the phone with family and friends, as much as my emotions and my stupid cell phone would allow, trying to tell them that Sarah had just finished surgery and madness was upon us. Looking back, it’s amazing what all has happened since then – the medical progress, the kids, life in general, and of course the Tiger football team.

On the medical progress front, Sarah continues to have CT scans and other testing done quarterly, under the excellent care of Clay Anderson at Ellis Fischel and his excellent nurse Tammy. She continues to receive shots of Sandostatin LAR, frequency now every 3 weeks, with that being her only treatment. We would undoubtedly be more frazzled and less sure if not for both of them. As a couple, we spend a lot of time looking at images. The addition of Mark Monroe to the mix performing the CT scans (and reading them; and making sure the scans are done to his exact specifications;) has increased our confidence in the situation drastically. A sincere, loud, public, heartfelt thanks to those fine friends and medical community members who are helping us almost daily. And to the Wacones who set up the dinner club that introduced us to those friends to begin with.

All evidence combined points to the fact that the situation is dramatically improved from two years ago – it really has been two winning years. Quarter to quarter it’s difficult to tell if there are real changes, but over time things have certainly improved. On her liver, quoting from the May 2006 CT scan “there are diffuse too numerous to count enhancing liver foci.” We were told in person, “more than 12” tumor spots on her liver. Current scan finds 2-3 spots, continuing “to be less conspicuous than those previous studies”. There’s a lot more information, but can be summed in the fact that any short-term comparisons show stability, when looking back to 2006, improvement or dramatic improvement. We’ll be going to New Orleans in three weeks to hear what they say, but don’t expect any change in treatment based on that visit.

Sarah & I went to lunch today (Sycamore, yum, where phone messages confirmed we were on window display) and I asked if there was anything she wanted me to include, or to not include, in this update. She just said “make sure you say it’s a good thing, not a bad thing.” It has been an extremely good time – two years of improvement, two years of laughter and fun and friends and family, and two years of victories.

Which brings us to football. 2008, 14-0, mark it down. Gary Pinkel, Chase Daniel, Chase Coffman, William Moore, Sean Weatherspoon, Ziggy Hood, Brock Christopher (WHOOO, Brock!!!), and Jeremy Maclin for President. Football season will barely be over in time for their inauguration, but they’ll sort it out. I’d point out that the blue prairie chickens have more publicity today for their failing to put the “student” in student-athlete and how this is likely embarrassing in light of the fact they’re already on probation for athletic department staffers providing answers to tests for these x-athletes, but it’s unlikely any beaker is even able to read this sentence. How ‘bout some numbers, beakers? 36-28, it wasn’t that close. Your record was 12-1. We’re the one. Also, I seem to have heard a staggering amount of ‘Arkansas is good, they’ll win that game’ from family members over Christmas, family members that I wasn’t even aware knew we were playing Arkansas. 38-7 evidently made them forget that they remembered, as I heard absolutely nothing on the most recent visit home. 14-0, mark it down.

Thanks to all of you for your continued offers of help, prayers, and good thoughts over the past two years, and on a side note, screw ku. (and you too Oklahoma.)

Jason

p.s. Adelaide informed me the other day that “Jayhawks really don’t stink. The people, I mean. Just the bird. It’s just a fake bird that stinks.”