Jason's Untimely Thoughts

Sarah, Adelaide, Jack, and I arrived in New Orleans late Monday afternoon. My mom & Bill arrived at basically the same time, with Sarah’s parents arriving this afternoon. Sarah had appointments yesterday and today for lab work, an Octreoscan, an MRI, and other pre-operative admissions junk.

A few things of interest to many, it seems, that I’ve neglected to mention. Or some of it I did mention but got lost amongst my wit and anti-beaker spirit.

• Surgery is scheduled to begin at 7:30 in the morning. We’ve been asked to show up at 5:30, hooray. This surgery “typically” lasts between 6 and 12 hours. The nurse today indicated she’s seen it be as “short” as 4 hours, as long as 16. I’d certainly expect it to be within the typical timeframe. We’ll receive updates from the operating room every couple of hours, and I’ll try to forward on an e-mail after Sarah is in recovery. I’ll definitely e-mail this list again, but it may not happen until sometime Friday.
• After surgery, Sarah will be in ICU for a couple of days in all likelihood. Then in a regular room for a few more days. We’re hopeful this puts us back in Columbia on July 3, but that’s on the short end of their estimates.
• The hospital’s address is: Ochsner Medical Center; 180 W Esplanade, Kenner, LA 70065. Cards of encouragement are certainly appreciated, and while flowers, etc., are nice, won’t be very practical when considering the ICU and our travel schedule from there. The hospital said as long as the envelopes have the patient’s name included in the address, they’ll find the correct room.

Of note so far on the trip — turns out “Ochsner” is Creole for Hollywood. The carcinoid docs have set aside rooms where immediate family can stay in the hospital while the patient is in ICU. Normally on the second floor, but they are on the third floor temporarily. Because last week Harry Connick Jr. and others were using those rooms filming the upcoming made for TV movie Living Proof. After kicking them out, now allegedly Jim Carrey and Ewan McGregor will be on location this weekend filming I Love You Phillip Morris. I’m not making any of that up and am ignoring countless opportunities for jokes.

In my last update I included “snoop around like crazy” as part of the surgical plan. Evidently there’s some more technical aspect to that, as one of the docs was just awarded a patent for part of that process. I assume that means it’s less expensive now.

Finally, thanks to the Columbia Smith family for hooking us up with Tuesday lunch at Cafe Adelaide. We were all treated like royalty, but none more than Sarah and Adelaide, who was convinced the place was named after her. I ate at arm’s length from New Orleans Mayor Nagin who spoke of making numerous improvements to the New Orleans airport as a priority and guessed that “if you’re talking about $10 billion, I’d say no more than $0.5 billion or so” was unaccounted for. Um, I mean, where I ignored him completely and went about enjoying lunch with my family.

Appreciate your prayers and positive thoughts over the past few and next few days, the notes of encouragement and phone calls we’ve received, and the general you-the-manness of all in this crowd. I’ll update again Thursday or Friday (or both) as the situation allows. And on a side note, screw ku.

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.

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.”

It’s been another grand year for the Becking household, moving forward with housing and growing and schooling and dancing and Mizzouing as appropriate.   Sarah & Jason travelled to New York, Virginia, Colorado, Oklahoma City, and San Antonio, with the rest of the family also making those last two trips.  We mixed in some medicine and some Mizzou on those trips, but even better got to see some old friends on each of them.  Thanks to all for hospitality along the way.

Jack Thayer is now two and likes race cars and football guys and super guys.  And race car shirts and football shirts and super guy shirts.  He’s also not above wearing a pink leotard should the occasion arise (with sister’s encouragement).  He’s attending pre-school for the first time, two days a week, and seems to be taking that very well.

Adelaide is five but missed the cutoff for the start of kindergarten by a few weeks, so back to CDC pre-school for her, this year at five days a week.  Jack shares her class in the afternoon when he’s there, so she gets to boss both the teachers and the brother around on those days.  She just had her third Christmas Dance recital, performing wonderfully in a Mambo Santa number, on the path of wanting to be Hannah Montana or, even better, a Golden Girl (and thanks to them for being so nice to her during the year).

Sarah & Jason are each cruising along in the photography realm.  Sarah continues to shoot for Mizzou and lots of kids’ portraits.  Jason continues to bring lots of her orders home with him from Miller’s.  It’s conceivable that her business is the only reason he remains on the payroll.  On the health front, monitoring and education remain the primary treatments, with the good help of our local physicians and friends accompanying the national groups.  Sarah continues to feel well, thank you.

It’s been a shockingly busy year, with lots of time in lots of places, but not nearly enough time with lots of friends and family.  The way of everyone’s busy world for sure, but we hope to improve there and see more of each of you along the way.  You’re warned for 2008.

Many have asked recently how Sarah is doing, so despite my continuing promises of no more updates until something changes, here’s an update.

We recently had another round of scans, both CT scans and Octreoscans, and then the visits with the corresponding doctors.  The scans continue to show either no change or positive change.  Some of the spots continue to get smaller while others appear to be stable.  Beyond the liver and specific lymph nodes, any time something “new” has popped up on a scan, it’s later been debunked.  No new spots, no growth, some shrinking.  All good.  And we simply can’t stress enough how fortunate we feel to have friends in town who can and gladly do help us decipher this stuff.

More detail, Sarah has been diagnosed as having “atypical carcinoid”.  The main feature that makes it “atypical” is that it grows faster than typical would, a diagnosis based on where Sarah’s carcinoid started, how it metastasized, and the tissue sample from that removed tumor.  However, it’s not behaving as a typical atypical carcinoid would.  Specifically, it’s not growing and has shrunk.

Based on the diagnosis, the standard treatment at this point should likely include chemotherapy.  In fact, the physician we saw in New York recommended a specific (eventually) combination treatment of two chemo drugs, to start immediately and last at least 4 months, potentially for years.  While not decided for certain, we don’t feel now is the time to start that treatment.  If the CT scans were showing something different, then maybe.   We’ll continue to monitor closely (more closely than every doctor we’ve visited recommends, with the exception of our local oncologist) and to investigate options.

One hope, among many, is that perhaps the situation has changed enough to make surgery an option on the lymph nodes, the liver, or in combination.  If we can get the disease limited to the liver, then that opens additional proven treatment options.  That’s where things stand as of today.  The decision on chemo hasn’t been made fully, but that’s how we’re leaning.

A common question when we’re discussing the situation with others is “How’s the football team going to be?”  We’re happy to report that another 14-0 season is in the works.  Tigers open the season in 10 days (6 days using Melissa Smith’s magic counting tricks) against Illinois in St. Louis for victory number one.  We have lodging arranged for 11 of those 14 games, with others in the family taking the bold lead and reserving hotel rooms in San Antonio for the Big 12 Championship game.

Adelaide and Jack have both gone back to school this week.  Adelaide’s in her third-year at CDC, or “Jack’s school” as he calls it.  JT has started there as well, going 2-days/week to “Adelaide’s school”, as she calls it.

That’s where we are.  Hope you’re well where you are.  Go Tigers.  Screw carcinoid.  Screw ku.

I’d been wondering why I haven’t put any new pictures up on the site in a while… turns out it’s because there were a few hundred photos from throughout the summer on our little camera. Some of those have now made their way here.

Many have recently asked how Sarah’s doing. All is well, while we continue to investigate options. The physician we visited in NYC recommended some other treatments, which we’ve been discussing with Sarah’s local oncologist and researching on our own. As part of that, another friend of ours (who is a radiologist) was good enough to review all the CT scans with us looking over his shoulder (literally). Just making sure we knew what we knew. At the moment, no plans for any new or different treatments, but we’re still looking around some. There is another round of scans scheduled for late August, so that could certainly influence a decision. Will probably due a full-blown update then.

Football season is coming up (hooray!). Sarah is continuing her history of shooting lots for them… some paid and some not. We’re interested in doing more of it paid, if you know anyone in the athletic department tell them to pay her.

It’s August and it’s hot. Around 100 degrees every day this week. Construction going on at work (expansion), so A/C is sketchy. That makes it fun. Heat index is for sissies, but it is hot.

Sarah & I just returned from a trip to New York city, where much fun was had. Originally just a vacation, we also worked in a little doctoring and some time with friends. Pictures from the trip are here.

We arrived on Wednesday and met up with Craig #1 at his apartment in Greenwich Village, then off to a quick dinner. On Thursday, we did a bicycle rickshaw tour of Central Park in the morning, then Sarah had an appointment with Dr. Richard Warner, another of the nation’s experts on carcinoid. He had some slightly different recommendations than we’d heard before, but preliminary. He’ll be sending us and our local oncologist a full report in approximately a month.

From there, we hit Times Square for sights and dinner. Times Square is an insane mix of corporate advertising, people, taxis, and all that comes with all of that. For foreigners visiting the US, what a shocking first impression.

On Friday, we went walking in SoHo, checking out the stores and the sights. We then met up with Craig #2 at his apartment on the Upper East Side, for dinner and more sights. Walked around 5th Avenue a bit, seeing the fancy stores and watching young girls take pictures of the “Gucci” and “Pucci” store signs. I want to establish a chain named “Hucci” and become a millionaire. Also saw Rockefeller Center, home of the NBC studios.

Saturday was a street fair in the Village then back up to shopping around Rockefeller Plaza. Late afternoon, we took the Circle Line‘s cruise around Manhattan. Three hours very well spent, seeing parts of the city and region that we’d have never seen otherwise (thanks to our DC friends for suggesting this).

On Sunday we hit Times Square again to buy half-price tickets to a Broadway show at the TKTS windows. After debating and deciphering, we ended up with tickets to Curtains at the Hirschfeld Theatre. Had drinks at Tavern on the Green in Central Park while waiting for the show, then back up to Broadway for the performance. High Quality.

We ended our trip by stopping at Ground Zero then a quick walk over to South Street Seaport. We took mostly subway, all over town, for cheap. Also took much advantage of the plethora of meat & drink carts all over town, the Duane Reade drug stores on every corner, and the Bagel Buffet just across the street from where we stayed.

Thanks to all that helped with this trip!

Happy May 10th,

A year ago this week, it was nothing but pure craziness and many on this list were first finding out about Sarah’s surgery et cetera (which happened 368 days ago). It was hectic times. Sarah & I were talking on Monday, an anniversary that you can’t figure out how to celebrate, only to conclude that “it has been a good year.”

With the benefit of hindsight, the best thing I can offer is continued and heartfelt thanks to any and all who have helped during this learning, traveling, scanning, kid-chasing experience. We’ve had help with meals, laundry, chasing kids, medical advice, insurance problem solving, chasing kids, housework, photography work, chasing kids, my work, getting to places, staying places, chasing kids, painting rooms, and countless other things. Too many times I try to speak for Sarah, but I know she joins in saying we simply could not have handled the past year without each offer of help. Thank you.

As for an update, Sarah continues to have CT scans and other testing done quarterly or thereabouts. Best information seems to be that the disease is stable, although the natural inclination is to question everything and look for more all the time. We continue to do that questioning and looking as well. We continue to be pleased with the care we’re receiving in Columbia, especially their honesty and assistance as we seek the opinions of others that see more of this disease.

The kids continue to grow, no matter how much we cut off their nourishment. Jack Thayer is almost 2 and Adelaide is almost 18. It’s dance recital weekend, so excitement is in the air. They have a new bedroom and play room, so we almost have a living room again. Somehow, I lucked into the fact that they’re happy to watch a James Taylor tribute concert thing I taped the other day, so I’m temporarily relieved from the Parent Trap¸ Aquamarine, High School Musical kid-movie loop of hell.

Later this month, we’re headed to NYC to take advantage of another generous offer and grab some vacation time in the big city. It didn’t seem right to make a trip and not visit a doctor or a Mizzou sporting event, so we arranged to visit with another of the nation’s carcinoid experts in NYC on that trip (although I’d be lying if I said I wouldn’t have preferred to get a Tiger football game going somehow instead).

And, speaking of football….. 114 days until the Tigers beat the Whining’ Illini and their illustrious orange uniforms. 198 days until the Tigers beat the mythical shoe-wearing birds and seal a trip to the Big 12 Championship game. About a month after that, the Tigers will claim their first ever 14 and 0 season. Mark it down. Learned things, and there were travelled around Europe like pengar.

Happy Mother’s Day to the Mothers. And on a side note, screw ku.

The entire family, plus support system, is in Oklahoma City for the Big 12 tournament this weekend. Or this night, as it turned out.

May or may not know, but Sarah had a breast biopsy on Tuesday. She’d previously had a ‘needle core’ biopsy, but the surgeon didn’t trust the results fully… didn’t think that method had enough tissue to rule cancer (or “pre-cancer”, depending on how they phrased things) out. So, had a ‘needle excission’ biopsy on this time around, basically like a lumpectomy in that they take out tissue around the area in question. Surgeon called this afternoon and said it was 100% clear…. absolutely fantastic news.

Adelaide saw a beaker sign in the lobby and made a big deal out of it… I told her she’d be seeing KU fans all weekend, trying to instill some sportsmanship, and that I’d just seen one walking through the lobby. “Did they stink?” she asked.

Happy Daylight Savings Time to you and yours.