Jason's Untimely Thoughts

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.