September 25, 2006
Well, after meeting with Dr Cecchi, things are still up in the air.
Apparently the PET scan doesn’t necessarily show up everything, like what’s actually in the esophagus. So… it’ll be back to Dr Berjis for another endoscopy, and probable biopsy.
I get the feeling that this “complete response” thing is like I’ve taken an early lead in the first quarter — running back the opening kickoff, forcing a three-and-out, and then getting a quick score to go up 14-0 with still 10 minutes to go in the first quarter. It’s an early lead — the best possible early result — but it’s a long, 5-year game.
No celebrations yet, until this surgery issue gets resolved one way or the other.
I’ll post once I find out when I’m supposed to have that endoscopy.
September 23, 2006
I did the scan thing on Thursday… and on Friday, Robin (Dr Cecchi’s lead nurse) called me with some good news. I called her back and she said she had the PET scan results with her, and that I had a “complete response” ! Okay, now, if you’re thinking like I am, you think “what, I filled out a survey?”… that’s a complete response, right? No, this complete response is far better when it comes to cancer. It means that, as of Thursday September 21, there’s no sign of cancer. The implication is that the cancer had a complete response to the treatment — it responded exactly as the doctors’ intended it. There’s more scans, probably every 6 to 12 weeks, but for now things are good.
This doesn’t rule our surgery… and now I’ll really have to do research to figure out what’s next with my doctors. I meet with Dr Cecchi on Monday, and Dr Swift (the radiation oncologist) on Wednesday. But this is by far the best possible outcome.
I was even cleared to have a beer or two. I tried this really good Pilsner (Truman?) out of a micro brewery in Berkeley…
What a great way to start the New Year (Saturday was Rosh Hashona). This, and of course the Cal Bears performance against ASU. But now that I know what it means, “complete response” are the two best words you can possibly hear!
September 22, 2006
Ah, Xanax. It’s a fine medication. The last scan I had my usual needle in the arm phobia thing, plus this radioactive dye felt really uncomfortable. Not if you take a Xanax well before the appointment! I took one about 5 minutes before my neighbor Chris gave me a lift to the lab. Once I got there I said I took 0.5 mg… should I, could I, take another? They want you to be really relaxed during the PET scan, apparently being relaxed means the dye doesn’t get absorbed in the muscles… so they said sure!
Bottom line: bring a copy of The Onion (very funny political parody paper) to any of these things, and take a Xanax ahead of time. Even the marginally funny will crack you up. No phobia (I was too relaxed), no mess, no fuss. I dozed off, and even slept through the scan itself.
Now, I wait for Monday, when I meet with Dr Cecchi. Oh, that and the Cal-ASU game. Go Bears!
September 20, 2006
Well, I realized I haven’t posted much lately. Mainly because there’s not much to post about. I’m feeling better, eat with my same ol’ appetite, gaining weight back (which isn’t that great), that sort of thing. I’ve done experiments and can get food to “stick”, but I’m really going out of my way to do so.
Some foods still turn my stomach (fried ones, mainly) and I’ve lost some of my sweet tooth (desert is okay, but no longer amazing). I can resist peanut butter now, and avacado seems green and mushy with an odd taste. Then again, many people feel that way about avacado.
I guess I’ve been reluctant to post because I did some research on the possible surgery I might have. First, the surgery is nasty, and has all sorts of risks (maybe that’s what google hits return, a bunch of papers outlining all the risks). The other bad news is that it’s hard not to read about the general mortality rates of adenocarcinoma in the esophagus. It’s fairly depressing, with most of the older conventional wisdom saying it’s about a 20% survival rate within 5 years. That’s not great. I wanted to link to something about the surgery for the blog, but don’t want to link to these research articles — I need to stay positive, that I’m in that 20% because of age and relative overall health (and the fact that Cal isn’t likely to go to the Rose Bowl this year).
With Governor Ann Richards passing recently due to esophageal cancer (she was 73), there’s some more up to date articles that are a bit more optimistic. I found a bunch of stuff which should provide some interesting reading; this article shows the survial rates with my exact treatment to be quite a bit higher (35% over 5 years cancer free). Heck, a .350 hitter is a superstar, while a .200 hitter goes to the minors.
I also found this cancer blog pretty interesting, and even about.com has a “if you have these symptoms” checklist for adenocarcinoma (it’s generally the readers digest version, the diet coke of information, but if you have the symptoms listed here, see your doctor).
So, here on the eve of me getting scanned, I’ve found some better news. I meet with my hero, Dr Cecchi, on Monday, September 25 to discuss the results. Stay tuned…
September 9, 2006
Well gang, because I’m a bit of a geek, I’ve been doing some random food swallowing tests from time to time. Water and liquids in general are no problem, unless really hot or really cold. Just about everything goes down now with little pain, although I do get the occasional “wolf the food” pangs and need to wash the mess down with water.
But in general, I think there’s less of a blockage in there than there was before all of this happend. I’m cautiously optimistic, but I’m strangely looking forward to the scans on the 21st to validate what I’m hoping.
I’m totally into the visualization thing and the “power of positive thinking” — whether it be called prayer, thoughts, or good wishes. Thanks everyone for sending those my way — I think its all really helped break apart all those cancer DNA strands so they can’t go through any more cell division. I think there’s less blockage down there during my very unscientific testing!
September 8, 2006
So a colleague of mine at work pointed me to his friend Tom, who actually had the same surgery that the doctors talked briefly about with me — where you remove half the esophagus and half the stomach. Tom’s doctors saw redness and said it was pre-malignant. He had really bad heartburn for years, so he went ahead with the procedure.
The bottom line is that two years later, he went on all the rollercoasters at DisneyWorld with his kids, and is totally fine.
It’s a nasty procedure that involves all sorts of tubes going in and out of the body. Blech. I’ll have to confirm some of the details with my own doctors. I think it varies a bit on how they can do it, but for Tom, it sounded pretty gross, and 10 days in the hospital would drive me nuts. The recovery was 6-8 weeks.
The big plus side is that after surgery, it’s done.
I don’t even know if I need the surgery — I know I will if there’s still some cancer left in there, but Dr Cecchi keeps calling it “an option”. We’ll see on the 25th, but it sounds like it’s pretty gross if I need to go through it.
September 7, 2006
Well, I believe I’m now set to be scanned on September 21st, and then see Dr Cecchi on September 25th. Then we’ll see what the next steps are. While the medical care has been fantastic, scheduling things has been, uh, non-optimal. For example, the scheduling went something like this:
“Hello, we have you scheduled on September 20th”
“No, that day won’t work… how’s September 21st?”
“That should work fine… you’re confirmed at 855 Telegraph”
” Didn’t the doctors want me to be scanned at Pacific Imaging?”
<three days later>
“Hello, you’re confirmed at Pacific Imaging on September 20th”.
“Didn’t I mention before that I the 20th didn’t work, and I need this on the 21st?”
“I don’t know, I didn’t write it down”.
I’m still waiting for confirmation, but there ya go. I found this strangely comical.
September 5, 2006
Gradually, over this last week, my taste buds have righted themselves. Food tastes good again! Some of it burns and hurts going down, but that seems not to be food specific, but almost random, as simple things like water still sometimes hurt. But I was able to sample some fine southern BBQ, and actually eat meat, so that’s all returning to normal. Not 100%, but enough to enjoy food.
All of this was just in time, as I’ve been waiting for this Cal – Tennessee game since it was originally scheduled back in 2003. Similar to the Holiday Bowl two years ago, virtually everything has been great — except for the game itself.
The pregame festivities were really impressive. A random Tennessee fan, “RockinGrannyVol”, invited all Cal fans to her tailgate via cyberbears, the Cal football message board. It was great — awesome bbq sauce, and delicious smoked brisket, pulled pork, chicken, potato salad, and banana pudding. All tasted YUM!
The atmosphere at Neyland Stadium certainly got me goosebumps, especially when their band march down the street and stopped to play in front of what must have been 30,000 people sitting “on the hill”. We followed the band down into stadium, which at 107,000, is HUGE. The stadium was bigger, the fan support was louder, and the whole experience just that much larger than any other game I’ve been to. The size and universal “sea of orange” at Neyland stadium was impressive. I had no idea that much orange clothing was actually made, let alone worn, let alone all worn by 100,000 people on the same day.
We went to Chattanooga the day after the game and had a great time at a Civil War battlefield, and topped it off with another BBQ meal — dry-rub, Memphis style rib and wings combo, and pecan pie for dessert. The ribs and wings tasted great!! Yum! The pie was mediocre, probably because the pie was actually… mediocre. Ribs and wings good! I can eat meat again! Hurrah!
The game, on the other hand, was a disaster. We have a QB quarterback controversy, the controversy being “do we have a good one?”. Apparently there are some freshmen waiting in the wings. Bring ‘em on. Our secondary looked completely pathetic — any good passing team will shred us apart. So much for the national championship run. At this point, an 8-4 season looks great, with losses to Tennessee, USC, Oregon, and one other road game. The upcoming Minnesota game now becomes HUGE.
The best thing about the game was sitting next to Pete Sharbarum and Ed Bartlett, both Pappy’s Boys. Pete was responsible for getting that cool statue of Pappy Waldorf installed across from Faculty Glade. It was great to talk football with these Cal legends, and really fun to join them in their chants of “get that ball”, “block that kick”, and “break his arm” as Cal finally got some points on the board in the 4th quarter and we pretended the game wasn’t out of reach.
So, expectations get reset. The good news here, is that both Brian and I will definitely beat this cancer thing because we have to see Cal play in the Rose Bowl in our lifetimes, and the way they looked in Knoxville, that certainly won’t be for awhile.
September 5, 2006
On the plane ride back from Tennessee I wrote up and edited some blog entries. I know there’s some way to make links for these things, but I can’t figure it out on wordpress.
So, check out new way more detailed posts below, entitled something like:
Blur of doctor’s visits
Wakey Wakey Saturday
DNA breaks apart
The port goes in
Hopefully you’ll find these new (backdated and updated) posts interesting…