Houston? We Have a Problem.

That was a roller coaster of a week. On the balance, probably more bad news than good, but having new information is a good thing in and of itself. This post runs a bit long as this was a very full week, but I think it’s important to paint the full picture at the outset. Before we start, please accept my sincere and heartfelt thanks for all of the thoughts, prayers and best wishes that you’ve sent my way. You have meant a great deal to my family and me. Here goes…

We flew to Houston last Sunday to meet the good folks at M.D. Anderson Cancer Center. I thought we were going for a day (a three hour tour, a three hour tour…), but ended up being there for a week. I was accompanied on the trip by the C-Team- my lovely wife and my longtime friend Dr. Joe Chewning. As fate would have it, Joe is a stud pediatric oncologist who has worked at a number of august institutions such as Sloan Kettering in NYC and UAB. Yes, it is totally baller to travel with one’s own personal oncology consultant (who’s a lucky boy?)

On Monday we met with Dr. Milind Javle. A very pleasant man that I suspect is about my age. We had a chat about what he saw in the imagery, and a bit about what he thought the eventual course of action would be. He confirmed what we knew (cancer), but suggested that it was probably more advanced than we had been told previously. He also suggested that he didn’t think that surgery was an option at the moment. He explained that he would be discussing my case with the full team on Tuesday, and that we would see him again on Thursday for a more thorough prognosis based on that meeting. He scheduled another CT scan for that night, changed up some prescriptions, and bid us adieu.

By my reckoning, that left us with two days in Houston, TX with nothing to do but hang around the cancer center waiting for the phone to ring. Eff that. Three years ago I made an architectural bucket list. In that short time, I have made remarkable progress in ticking buildings off the list (I’ve written about a number of them: Paris, Rome, Spain, the Summer of Sullivan). As fate would have it, we were a mere four-hour drive from another target, Lou Kahn’s Kimbell Art Museum in Fort Worth. The building is a jewel in an almost literal sense. The play of light is what makes precious gems sparkle, and it is the play of light on concrete and travertine that makes the Kimbell such a masterpiece. The Renzo Piano addition is also very nice.

We woke up on Wednesday and hustled back to Houston. It was a good thing that we did not linger in DFW, as Dr. Javle scheduled an appointment with Dr. Herlong, the liver specialist. Part of my problem is that my tumor has spread to my bile duct, constricting it and causing a bile build up in the liver that results in jaundice (and itching like a MF). Apparently, within the liver I have a number of complex strictures. Back in Chattanooga we had a doctor perform an ERCP to put a stent in the duct to help relieve the jaundice, but by his own admission the placement wasn’t perfect.  Somewhere along the line we were told that PSC is a distinct possibility, and Dr Herlong echoed this concern. Of course, this would suck as PSC has no cure, and with my big-ass tumor I am not a candidate for a liver transplant.

As we left his office and walked through this massive medical building, I had a moment. Everyone in that building is there because of cancer. As we walked through the Sundial Room (a large space for folks to hang out), there were dozens of folks in various stages of their fight, many looking quiet frail and pitiful. I remember thinking to myself “My god, look at all these poor souls. How lucky are we.” Oops. Despite the fact that I feel good (and look great, if I may), I am very much in the shit as they are. Exactly how deep, we would discover the next morning.

Our Thursday meeting with Dr. Javle was a difficult one. The official prognosis was stage four gall bladder cancer (whereas before the consensus seemed to be stage three). The tumor has spread from the gall bladder to the lymph nodes, the bile duct, part of the liver, and part of the colon. Having researched my condition over the past few days I was prepared for the life expectancy portion of our conversation. Despite that preparation, it is no fun to hear the doctor explain that people diagnosed at stage four have a typical life expectancy of a year if they undergo treatment (and six months without). No bueno. I do not recommend you have this conversation with your doctor.

Our discussion then turned to how we are going to beat this thing. As you might suspect, we’re going to take things step by step, and upon the completion of each step, we will evaluate our options. Cure, in my case, may be elusive. Apparently, this adenocarcinoma likes to come back. If we manage to lick it this time, it will likely come back for more (but we’ll worry about that later). In the meantime, the first goal is fix the jaundice, as we can’t start chemo until my bilirubin levels come down (significantly). Toward that end, Dr. Javle pulled some strings to get their rock star endoscopy guy to do another ERCP to see if we can get a better stent, and investigate just how bad things are in the liver.

Shortly before lunch on Friday we went in for the ERCP with Dr. Jeffrey Lee. He introduced himself by calling me “the famous Mr. Rushing” and “the Ironman”, so he clearly understands that I’m highly susceptible to flattery. He mentioned in passing that Dr. Javle was probably the best gall bladder cancer doctor in the world (so I’ve got that going for me…which is nice). As for the procedure, he explained that I have a number of complex strictures in the bile duct that extend up into liver. His goal was to remove the existing stent, and see if he can do a better job of bypassing the strictures and allowing the liver to drain- with the understanding that this appeared to be a very tall order.

After the procedure, I woke up, emerged from the fog, and met again with Dr. Lee. His verdict: “I am elated!” He pulled us over to a computer monitor to show us his handiwork. He explained what was done in the previous ERCP, then described (with obvious pride) what he was able to do. The upshot is that there is no PSC, the ducts above the worst stricture are communicating, and he was able to get a great stent in to drain the liver. The next day we flew home to Chattanooga. (Update: in the three days since the ERCP, the bili levels have been slashed by half. Bueno.)

So a long, tough week ends with what appears to be our first win. I’m back home with Denise and the boys, and everyone seems to be in good place. I can’t begin to describe the outpouring of support and love that you have sent my way- please know that I love you right back. Stay tuned for next week, it's going to be a fun one...


C on The Big C

Well, the blog retirement didn’t last very long did it? As Jordan once returned to the game he loved, I find myself back in front of the keyboard. The reason for my return, however, is more serious than the fact that I couldn’t hit a curve ball. A couple of weeks ago I was diagnosed with adenocarcinoma- stage three cancer of the gall bladder that has spread to the lymph nodes, liver, and bile duct.

How in the world I got gall bladder cancer has perplexed all of the doctors. There are only about 4,000 cases of it in the U.S. per year (as opposed to ~350,000 cases of breast cancer). It is also typically found in Native or South Americans, women, people with gall stones, and typically when people are in their 60’s, 70’s, or 80’s. This particular cancer is quick, aggressive and deadly. By the time it gets to stage three, the five-year survival rate is in the single digits. I’m not daunted by the statistics though- if it was one in million (figuratively) to get it, one in twenty to beat it doesn’t sound so bad. That said,  I’m not into watching the scoreboard while there is still game left to be played.

After hearing the news I decided that I would write about my experience. While the old blog was a thousand words a week, once a week, I’m not exactly sure what this will look like. I suspect I will keep you updated on the situation, and probably venture into the realms of architecture, urban design and food as before. I don’t suspect the posts will be as long, and I don’t suspect I will be able to always keep a regular schedule (although that is my goal). For now, I will try to keep to the schedule of the old blog- look to your inboxes on Tuesday mornings.

I have heard from a lot of you, and I greatly appreciate your thoughts, prayers and best wishes. Keep sending me your positive vibes, because I'm sending them right back at you!

I know that a number of you receive the blog via an automatic email subscription. If the shift of topic from urban design to cancer is not your cup of tea, or you end up receiving too many emails, I fully understand if you unsubscribe (it won’t hurt my feelings ;)