Jason's Untimely Thoughts

New Year’s greetings to one and all and you and yours. With any luck at all, this will be my only update on us in 2007, until you receive a surprisingly cute and witty Christmas card from us late in the year. Or maybe it’s a cute and surprisingly witty Christmas card. Or maybe it’s just cute. Whatever.

Sarah had another CT scan about a week ago. The spots continue to shrink! While continuing this course of treatment, we also continue to investigate other options for down the road. We will continue the route of having CT scans every 3-6 months to track things and reevaluate as new opportunities present themselves. We’ve also forwarded the updated information to the physicians we saw previously in Baltimore and New Orleans to see if their earlier recommendations are affected. Good news.

In new news, Sarah had a mammogram last week which raised a few questions. We met with a surgeon here in town last week, with the possibility raised of DCIS (ductal carcinoma in situ), and a biopsy was scheduled for yesterday. Sarah just heard from the radiologist a few minutes ago, and the biopsy was negative. In this case, Sarah is seeing doctors at Boone Hospital Center and they are likely going to recommend a further biopsy just to be safe given the medical history. They are being extra careful, for which we’re grateful. The doc did indicate, however, that he would be surprised if the further biopsy contradicted the first results. More good news.

(I started to explain what DCIS was, but google that term if you like. Lots of answers there. Google is Scandinavian for good news.)

Since I’m sending no more updates this year, here’s what you’ll be missing:

• We’re going to Oklahoma City in March for the Big 12 basketball tournaments. We hear OKC is nice. We’re doubtful.
• “OKC” makes me think of something that ‘gangsta’ suburbanites from Overland Park would call themselves.
• At that tournament, the basketball Tigers will continue their late-season run into the NCAA tournament.
• The Tigers will start that late-season run into the NCAA tournament any day now.
• Also at that tournament, I will become physically ill at the sight of Sooner Red, OSU Orange, UT Orange, and the mythical shoe-wearing birds all interspersed around me.
• Jack Thayer turns 2 in June and Adelaide turns 5 in September.
• Sarah & Jason also continue to age, but have stopped bragging about it.
• The football Tigers will reach the elusive 14-0 mark in 2007. I hope to make at least 10 of those games.
• I’ll fail in my efforts to provide no more updates, likely caused at least in part by my wanting to gloat over a MU victory. Now that’s good news.

… from the Beckings. Jack, Adelaide, Sarah, and Jason have each had a fun-filled year, details of which we’ll now bore you with.

The little lad Jack Thayer recently weighed in at 34 pounds, which happened to equate to a pound per inch tall. He had his first birthday party in June and was seemingly unimpressed. He’s getting around anywhere he wants to go at this point, enjoys throwing pens and remote controls at Jason’s nose, and finds particular amusement in throwing the vast collection of balls we keep in Kitchen #1 down the basement stairs. “Uh oh”, “oh no”, “down”, and “bye” are each likely responses when a ball disappears. He’s not really much of a talker yet, but that’s mostly due to lack of opportunity.

Which leads us directly to older sis Adelaide. AEB turned 4 years old in September. She loves movies and pretending and dancing and telling stores, some of which are based upon facts. She’s become a busy chick, with dance recitals, soccer camp, dance camp, swimming camp, dancing in Living Windows in downtown Columbia, etc., sprinkled throughout the year. Her schedule has hit a reprieve, though, as she’s decided against going to any more Tiger men’s basketball games. She doesn’t get to go to the locker room with the Golden Girls at those, which is honestly enough reason for almost anyone to quit going to the men’s basketball games.

Sarah has seen her schedule pick up quite a bit, as is always the case in the fall. MU pictures, family photos, kids photos, and other randomness keep her as busy as she wants to be in the photography realm. She’s fortunate to have a compadre here in town that shares resources with her, benefiting both of them we think. Her photography and search for health information (with help from grandparents) have allowed us to see great friends in Tyler & Waco, Texas, New Orleans, DC, Columbus, Portland, and more. We’re also blessed to see so many friends and family come through Columbia, particularly around football season. (And she’s feeling well, thank you.)

Jason is still working at Miller’s Professional Imaging, which he enjoys very much. He enjoys it even more when everyone he knows uses Mpix.com instead of Shutterfly, Walgreens, and the like. We have a 34 pound baby to feed, you know. Beyond work, Jason still enjoys all things sports, particularly Mizzou, and chasing the kids around. Although chasing the kids around sort of applies to work as well. Sadly, he lost his gall bladder this year, an event from which he’s still recovering his humor (old joke, but everything gets funnier with repetition).

In all seriousness, we know life is busy and crazy for everyone and we appreciate everyone’s efforts on our behalves this year. We’ve been smacked in the head with reminders of how many great friends and family we have who are willing and available to look out for us however they can.

May your days be filled with family and friends and fun and funniness and may your favorite teams be victorious. Except for fans of the mythical shoe-wearing birds, you’ll just have to get by with family and friends and fun and funniness.

On my last SEMB update, I mentioned that things were going well with the Sandostatin shots and there really wasn’t much to report. One of those things have changed, and in a good way!

Sarah went for another round of bloodwork and CT scan on Tuesday of this week. While waiting to visit with the oncologist afterward (while he was likely reviewing the just completed scans), Sarah looked at me and said “Wouldn’t it be great if he came in and said they were gone?!” Not quite that good, but the absolute first words out of his mouth were “They are shrinking.” After a few seconds of nervous laughter and not idle thoughts of felonious harm should he be kidding, we were assured he wasn’t kidding and were of course overjoyed.

He indicated the full radiology report would be coming soon. He couldn’t put words in their mouths but wouldn’t be surprised to see words like “suprising”, “astonishing”, etc., in relation to the differences from a few months ago. The official report arrived today which said, among other things (revised below to my layman’s understanding):

• Of the multiple masses that had appeared in Sarah’s liver on the first CT scan, only one was now visible. It is approximately 9mm and “has decreased in size from the previous exam”.
• Mass near adrenal gland has decreased in size from 3 x 2.2 cm to 2.7 x 1.4 cm.

It’s almost certain that there are still other spots on her liver, but they’ve been reduced to the point that they’re no longer visible on the scan. All along we’ve heard/read reports that the Sandostatin has shown to halt/decrease tumor size, but there’s simply not enough medical evidence to ‘prove’ that it can. We’re extremely happy that Sarah can add to the proof.

As I type, Sarah is headed to Portland, Oregon, to attend a carcinoid patient/physician conference over the weekend. There was some debate about whether she wanted to skip that event in order to stay in town and photograph the MU-Colorado game this weekend. The conference won, but we did postpone the next CT scan for a week when they originally suggested Jan 3 as the date. Sarah correctly pointed out that we’ll likely be traveling to/from a bowl game that day, so wouldn’t want to have to reschedule.

I also feel the need to report that my faith has been shaken. We recently found out a new acquaintance of ours is a KU grad. We really like both her and her husband, but are struggling with how to proceed. This now makes three female friends who attended the land of shoe-wearing birds, so the continuation of a trend. On a side note, screw ku.

Sarah has another round of blood tests and CT scan scheduled for early next week (last week in September).

After that, coincidentally, she’ll be headed to Portland, Oregon, for more education. She’s hoping to attend the Pacific Northwest Carcinoid Cancer Support Group’s Patient/Physician Conference, which takes place Sept 28-30. Many of the top physicians in carcinoid, both US and international, will be attending and speaking, along with patients from all over the US.

We messed around and didn’t get registered for the event in time. However, since we have some good friends in Portland, Sarah decided to head out there anyway in hopes of crashing the event if possible.

I’ll almost certainly provide another update after she returns from that event. (and if you happen to be looking for photos from the MU-Colorado football game, this explains why there aren’t (or won’t be) any.)

Humidity-drenched greetings to you and yours… Sarah & I returned from Baltimore late last night, with relatively positive news. First, thanks to all those who survived their time with the kids in our absence.

The folks at Johns Hopkins were great, we received fine treatment and were happy to be there. Sarah had bloodwork, a CT scan, and an endoscopy performed on Monday and then we met with a surgical oncologist on Wednesday morning. They found nothing new with the CT scan or endoscopy, which was good news. Sarah’s stomach surgery appears to have healed well and they found no evidence of carcinoid remaining in her esophagus, stomach, or intestine.

One of the reasons we were interested in talking with this physician was that he is highly aggresive surgically. In an odd twist on things, he didn’t think surgery was the best option for Sarah, but his rationale made that good news. He said the distribution (all over Sarah’s liver) and relatively small size of the tumors would make it difficult for him to get all, or even most, of the tumors. With symptoms under control and liver functioning normally, then, it would likely be more trouble than it was worth to perform surgery right now. If there was a change in size of the tumor(s), or liver function was affected, then he would be willing to consider surgical options at that time.

This was a major departure from what we thought, that surgery might not be possible because we were ‘too late’. While the bad news is he is unable to go in and remove all of the tumors, we were already expecting that news. The fact that he didn’t feel surgery was worth the trouble right now, but could still be an option in the future, gives much promise of much more time to worry about all that.

The chemo-embollization I’ve mentioned before may still be the first hard-core treatment Sarah tries, but we’re not going to hurry to schedule that. As it stands currently, Sarah has decided to continue on the monthly shots of Sandostatin, let some time pass, have more CT scans done every three months or so, and continue to re-evaluate the plan as necessary. No timetable, we’ll just evaluate as we learn more.

Baltimoreans thought it was hot & humid. I expect to hear simultaneous laughter from almost everyone on this e-mail list. In fact, they thought it was so hot that they had to close the zoo, to protect people from going to the zoo and getting too hot (seriously). It was hot and humid, but nothing like the hot humid hills packed with snow and ice that I had to walk to/from school on. We had two excellent opportunities to hit an Orioles game, but if it was too hot to go to the zoo, really, how could we be expected to attend a baseball game? Especially an American League game. Much thanks to those who opened their home to us, especially for arranging for the family of deer to greet us by the road in the morning. In general, we heard lots of talk about how bad Baltimore is and was, but it was great by us.

On return from Baltimore, we were a little over an hour late landing in St. Louis. Turns out, that was a good thing though as the airport was in shambles after high winds/tornado came through, knocking power out for several hours and causing much harrumphing. We were seated next to an oncologist, an Air Force higher up stationed at the pentagon, and a newly minted US Army private, though, so we were safe. Plus, we got free parking out of the deal.

My favorite part of the trip was going to DC, where we learned much.

• First, it is also hot & humid there.
• Brock Olivo is still alive, and contrary to urban legend does eat things that are bad for you. Specifically, he eats gellato from the Smithsonian Natural History museum.
• There’s not nearly enough parking and way too many ugly fences around the various memorials.
• It’s evidently possible for security guards to be respectful at Arlington National Cemetary while simultaneously yelling at the patrons to be quiet so as to show respect. I had to fight against every urge in my body to not point this out to them.
• Although there are lots of signs saying no U-turns, they don’t apply (like many rules in DC).
• Finally, when practicing civil disobedience in front of the White House, it’s very important to be obedient to the angry man carrying the bullhorn. For instance, don’t scream “justice” when he screams “peace”, and vice versa. The man must be listened to when preaching against the man.

Since the plan as it stands is to wait, watch, and pay attention, this will be my last update for a while. The next thing many of you will read from me will be how the beloved Tigers are going to beat the Racers from Murray State by 50 points on their way to an outstanding season, with tailgating planned to precelebrate it all. (Any MU people reading this, I need a Lot D pass. Come on, you can do it.) Down with the naysayers.

Man, this is long, I’m sorry. On a side note, screw ku.

Sarah & I are going to Baltimore on Sunday to visit with some docs at Johns Hopkins University…. Their hospital was rated #1 in the USA for the 16th straight year, so we’ve got that going for us. Or maybe they’ve got that going for them.

Sarah has appointments and tests scheduled all day Monday and then a follow-up visit on Wednesday with a surgical oncologist there. On Tuesday, we hope to maybe hook up with some friends who live in DC. As I’ve said going in to every one of these visits, hopefully when we return we’ll have all the information and opinions we need and Sarah can choose which treatment option she’s most comfortable with.

The kids will be staying in Columbia at our house, so if you’re driving by you might stop in and make sure their grandmother is surviving. They are doing well, with Adelaide taking swimming lessons and soccer camp this week. She thinks her 17-year old swim instructor is cute, so that’s going well (and I’m already dreading teenage years). Soccer camp is in the evening and has been pretty muddy, which Jack is liking quite a bit.

Just over 50 days to football season, which is coincidentally how many points we’ll score while beating the Racers of Murray State on September 2. True story, my high school football coach is Murray State’s all-time leading rusher, but that won’t help them much. Football season is the happiest time of the year, so you’ve got 50 days left to be miserable if you so choose. Speaking of miserable, insert KU joke here.

Sarah & I returned from New Orleans late last night. From everything we saw, ignore the reports on TV about violence and other craziness. We had a fine time visiting the French Quarter, ate some beignets at Cafe du Monde, and walked/drove around the Garden District, where our hotel and the doctor’s office was located. I think it’s fair to say that New Orleans has never had a reputation for being a “clean” city, so the hurricane damage was hardly noticeable to us. Looked like the trolley lines had simply been abandoned and they were in the midst of a remodeling boom. We didn’t venture out much, so I’m sure there are still places that are devastated. It was also easy to tell that the residents were still struggling with remaking their city and their lives.

As for the doctoring, we met with an oncologist from LSU on Monday afternoon late. He has over 20 years of experience dealing with carcinoid and would be considered among the nation’s experts on the subject, I’d have to think. He reviewed Sarah’s files and scans and then offered his assessment and treatment opinions. He does not believe Sarah is a candidate for surgery at this time, based on the amount of carcinoid in her liver. He suggests treating as aggressively as possible, with the goal of slowing and debulking the tumors to the point where surgery is an option.

His specific recommendation was to begin chemoembolization* as soon as possible. (*See below for what that means). We’ve already had informal talks with our local oncologist about that and will likely pursue that treatment at Barnes Hospital in St. Louis. It would be a 3-4 time thing, with 6-8 weeks between them. The LSU doc also suggested some slight modifications to the injections and CT scans Sarah has scheduled. Our local physician agreed with those recommendations and we’re going ahead there. We also are still expecting to hear back from the physician at Johns Hopkins in Baltimore and will visit there if he feels that would be beneficial. (And if the flood waters go down and it stops raining. Proof that worrying about the weather possibilities is silly — going to New Orleans instead of Baltimore and rain hits the Northeast. Hey, network newscasters, the rest of the country doesn’t care that it’s raining a lot in the Northeast. Where do you think that rain was last week? It rains hard here too, we just don’t put it on your evening news every night.)

Generally, it’s a happy time of year. Sarah & I got to see old friends and their 3-year old daughter in New Orleans. Birthday parties like crazy this weekend, two Independence Day parties we’re hitting, good friends in town right after that, and to Columbus, Ohio, for friends’ wedding late in July.

After this, I’ll probably quit on the updates for a while. Unless I think of something funny to say. We don’t expect significant new news in the next 2 weeks or so, so not hearing from me simply means you haven’t heard from me. Huh?

In World Cup news, Ronaldo may be fat, but he still scores goals. The US doesn’t score goals so has gone home to get fat. MU football will be fat with victories this fall. Mizzou basketball will force the fat cats to stand and cheer from their fancy seats. (and KU’s football coach is fat.) Two other important lessons learned or reiterated, when you’re lost, driving faster will get you loster; and ku sucks.

Hope all is well for you and yours. Happy July 4th (and June 28th),

Jason

In my last update, I said that we’d had a 3D version of the octreoscan done, but we hadn’t heard the results of that yet. We’ve now heard those results as well as received more information from MU pathology. In a lot of ways, we’re continually learning that we don’t know much, and that’s the biggest point of this e-mail.

MU pathology did some more testing, ultimately concluding that the mitotic rate of the carcinoid was as Poplar Bluff had first indicated. That means it’s growing faster than normal for this type of tumor, but it’s important to remember that ‘normal’ is extremely slow relatively speaking. It also indicates that the carcinoid may be more vulnerable to chemotherapy than normal. My first report about mitosis said the info could be “good/bad/incorrect”. We’ve eliminated incorrect, so it could still be good or bad.

The SPECT OctreoScan also leads to mixed news. All along, there’s been intrigue over whether the lymph nodes are involved or not. In almost every case, it’s been mentioned that it might be adrenal gland too, ultimately to only come back to the fact that it’s lymph nodes. Early on, there was also hope that the lymph nodes were simply enlarged due to surgery, but that’s proven false. The SPECT scan doesn’t really clear any of that up. The radiologist believes that it does suggest adrenal gland involvement, and possibly the spleen, but basically isn’t certain. Upon reviewing the scans, our physician doesn’t believe that to be the case, he believes the lymph nodes behind the stomach are the issue (based on the CT scan). We’ve also had another highly respected retired radiologist review the scans informally, and he also tends to believe that it’s lymph nodes and not adrenal gland/spleen.

In every case, however, they indicate that we should clearly seek opinions of those who see more of this type of cancer and we have formally started that process. We’ve sent complete medical records and the scans to Johns Hopkins, where a surgical oncologist will review and contact us with his opinion & recommendations. He received the records this morning. We’re also headed to New Orleans for an appointment on Monday, June 26, with a physican at LSU who is a carcinoid expert. Between those two places, we hope to collect (and be able to comprehend) more information at which point Sarah will determine which treatment option(s) she’s most comfortable with.

Also, I previously indicated that summer is here, so time to get ready for football season. MU has obliged by releasing some football news. We’ll be beating the Ole Miss Rebels starting at 11:30 on Saturday, Sept 9, on Fox Sports TV (but you should come to Columbia for the game). There will also be a blood-letting on ABC on Saturday, Nov 25, at 11:00 a.m. as the Tigers beat the mythical shoe-wearing birds (but you should come to Columbia for the game).

Jack Thayer had his first birthday last week, pics of that are now on our site. Some other pics of the kids and of Adelaide’s dance camp are also newly added. In addition to dance camp, Adelaide is also scheduled for soccer camp and swim lessons this summer.

Here’s some funny stuff that Adelaide’s been saying:
When looking for someplace level to set up a game, I told her “Here, you can use my belly, it’s flat”. Her response, “no daddy, it’s fat, not flat!” Smart-aleck kid.

Word confusion:
gotfor = forgot
Cumbalia = Columbia
poskiple = popsicle
feelhead = forehead (because that’s where you feel to tell if she’s feeling well).
mazagine = magazine
muggilan = mulligan
stinky = jayhawk*
smells like cat poop = jayhawk*

*and despite many’s opinion, it’s not I that’s teaching her this stuff. I swear. just comes naturally, I guess. and on a side note, screw ku.

If you haven’t ever tried, it’s fairly difficult to come up with something that rhymes with Octreoscan.

Originally scheduled to begin on Monday, Sarah’s Octreoscan instead began Tuesday. She was injected with indium In-111 chloride on Tuesday at 1:00 p.m. On Wednesday at 1, we returned to the nuclear medicine facility where they scanned her chest, abdomen, and pelvis with a Gamma-ray camera. The In-111 attaches itself to any carcinoid, “lighting up” any tumors in the scan. We then met with the oncologist later yesterday to discuss the results and had a follow-up scan this afternoon. The follow-up scan was to create a “3D” version of the scan.

From yesterday’s scan, the carcinoid is in Sarah’s liver as we’ve known all along and is in some lymph nodes near where her stomach and esophagus meet. There were no signs of carcinoid anywhere else, which is good news naturally.

With her local physician yesterday, we discussed three likely treatment options. These included everything from trying experimental chemo- (or other-) therapy, to trying surgical options, to continuing to try to learn more before making that decision. His recommendation, which we generally agree with, was to find a physician who was a carcinoid specialist who might be inclined to treat the carcinoid aggressively. We would then plan on scheduling visits with that physician as appropriate to hear what those options might be. At that point, then, Sarah would begin to choose between those three basic treatment strategies.

We also briefly discussed another new patient of his who happened to be diagnosed with carcinoid 20 years ago, but had not done any follow-up or treatment. The key point being she was diagnosed 20 years ago.

Several have asked, and I’m sure many more are wondering, but we’re very fortunate to have an excellent insurance package through my work (www.mpix.com, order prints please, baby needs a new pair of shoes). We are in great shape as far as that goes, even considering we might be planning to go to Anywhere, USA, to visit with that other physician.

I’d also like to “publicly” point out that we’ve been very pleased with the care we’ve received, both in Poplar Blufff and in Columbia, and have every intention right now of continuing care in Columbia, at least partially. While we’d encourage one of the Columbia physicians to consider phrasing things a bit differently, I don’t have any issues with what he told us and feel it was his best, honest opinion, including the fact that we should consider talking to other physicians and he’d help with that process. The physician we’ve seen most frequently in Columbia (and whom some on this e-mail string know), has been very helpful, very pleasant, and a valuable resource.

I’d also like to publicly point out that you can’t spell “sucks” without KU. The Tiger baseball squad plays Cal State Fullerton this weekend for the chance to go to Omaha for the College World Series. I realize the chance to go to Omaha doesn’t sound like much, but the athletic department folks are rightly excited about that opportunity. Game time is 9 p.m. CDT Fri, Sat, and Sunday on one of your ESPN stations.

I’d also like to point out that Jim Bob Cooter was suspended from the University of Tennessee football team. When contacted, his mom was quoted as saying “Jim Cooter sounded too durn classy.”

Early this week, as I reported, we received the very positive news that the carcinoid wasn’t seen anywhere besides where we knew it existed already, in Sarah’s liver. The following day, however, we spoke with another physician who had the official CT scan report which indicated that some lymph nodes were also involved. In addition, while I had earlier reported being about 12 spots in Sarah’s liver, he indicated these translated to roughly 50% of her liver. Neither of those tidbits were particularly good news, nor was his feeling that surgery wasn’t likely to be useful in Sarah’s case.

In the meantime, however, we’ve received more information that calls into question some/part of the CT scan report. Not questioning their efforts on that, just seems that we do need quite a bit more information to say for sure what’s where and where’s what and thusandsuch. Sarah is scheduled for an Octreoscan early next week. That is a two- or three-day high-tech process that should give us better information about all that.

In addition, we’ve requested the complete tissue samples be sent from Poplar Bluff to Columbia, where MU pathologists are scheduled to do some more testing of their own early next week. Again, all aimed at learning more about the type and location of the carcinoid.

Many have asked about the shots, with a few offering to come over and be the punisher. They are going relatively well, seeming to be much worse in anticipation than they are in practice. As I just told someone privately, though, I’m on the good side of that needle.

In the meantime, we’re all doing considerably more research and I’m doing my best to drown the physicians with random tidbits of information that I’m finding useful, but they’re almost certainly finding partially elementary and partially redundant (and partially annoying).

We continue to have great support of friends and family, which helps in both day-to-day activities and in research and contacts that help us figure out what to do next.

Sarah & I are headed to St. Louis tomorrow to go to the Cards-Cubs game, so if you’re interested in any of our stuff, tomorrow night’s the time. We seem to be sitting almost directly behind home plate, up 25 rows or so, so look for us. I’ll be wearing a Gold Mizzou hat, in honor of the fine folks that gave us the tickets. Also because I like the hat and have developed a sun-sensitive upper scalpal region.

Mizzou plays Pepperdine today in the NCAA baseball tournament. Go Tigers. KU plays someone today in the NCAA baseball tournament. Go someone.

Columbia schools are officially out, which means I’m now ready for football season. Tigers, 14-0.