Okay, so where was I?
Basically, since my last update-about-me post, not a lot had happened in the “Jim’s health” world, until yesterday. Yesterday, I finally had my first appointment(s) at MD Anderson
Cancer Center (They’re stylizing their name with “Cancer” struck out, so I’m doing it, just this one time).
But I have to mention the Preemptive Billing Event first. Sometime just after Christmas, I got a statement from MDA, with an amount due. I found this curious as I was still not quite a month away from my first appointment. Turns out it was a pathology review, because apparently they get a lot of referrals from Bob’s Bait Shop & Hospital in South Lower Podunk that are based on sketchy diagnoses. So of course they had their pathologist look at an electronic slide (that’s right, on a video screen) of the biopsy sample taken by an accredited cancer treatment center located just a couple of miles west of their place on December 7, 2017, during my colonoscopy that got this whole ball rolling. You’ll note that this was from before I even started the year-long-so-far treatment course, and was more than a year old when they looked at it on December 10, 2018. So, “relevant to my current situation” is not a phrase I’d use to describe it. After some calls and emails to try to figure out why this was a thing that a) happened, and b) I needed to be charged for, MDA agreed to eat the cost. Just as well, because it was done in 2018 and thus wouldn’t have counted against my 2019 deductible anyway.
So yesterday’s schedule was thus: 1:30pm: new patient registration. 2:00pm: oncologist. 3:00pm: blood work. 4:00pm: CT scan (start of process). But first we had to get there.
MDA’s Colo-Rectal Cancer Department is in the Main Building, which is located in the Texas Medical Center. Basically, what happened is that all the major hospitals serving Houston decided build their towers practically on top of each other a bit south of downtown. The streets around there are perpetually under some sort of construction, street signs are often located behind obstructions that obliterate their visibility, the towers themselves have their names up near the roof, so you can see, say, Texas Children’s Hospital is there from two miles away, but once you get in close, is it this brown tower or that brown tower or the brown tower over there? The streets form a maze of twisty passages, all alike. There is probably a Grue. You need to avoid being eaten by it if you are to get medical attention today.
We did eventually find MDA’s main building and the entrance to Parking Garage 10 that we were directed to use by my appointment documents. We’d taken Kim’s Mustang as we knew it would fit in the garage, but we weren’t sure about whether the truck would (more on that later). We eventually found an open spot that wasn’t occupied by part of at least one other car (Parking Is Hard)… on floor 12. Down the elevator to the skybridge at 3, across to the 3rd floor of the Main Building, up Elevator Bank A to the 7th floor.
Registration was painless, as I’d done most of the questionnaire work online the night before. Charged for the visit (the whole thing, because I’ve got a $3000 annual deductible on The New Insurance), then off to the waiting area, then called back by the nurse who took my vitals, then I was seen by The Fellow du Jour, who is an MD on a training fellowship. He was personable and competent, and he did a lot of the questioning and note-taking about my case from diagnosis to treatment-to-date. Then the new oncologist (the one my old oncologist recommended and an old buddy of said old oncologist) came in and he’s very much The Smartest Guy In The Room, which on this subject, he most definitely is. But friendly and personable, and when he suggested doing Science (genetic sequencing to identify my particular cancer-specific proteins), I was totally on board with that.
Come to find out that the imagery from my first CT scan didn’t make the trip over from Kelsey-Seybold, but I have it on CD-ROM, so when he asked if I could get it, he was happy to hear that I had a copy. I agreed to bring it in ASAP (that was today) so they can review and see what a total mess my innards were at the start compared to where they are now.
They’re going to review all my info, including yesterday’s CT scans, and have a case review meeting with the team (including the surgeons), and then I go in for a follow-up to discuss The Plan. (That’s been scheduled, along with more blood work that’s likely for the genetic work, for Monday, Feb. 4, at an hour that will require me/us to leave the house before 6am because of traffic. No, I didn’t get to pick the time.)
This all ran late, and thus it was nearly 3:45 by the time we got a ride in Elevator Bank A back down to 2 for the blood draw. But that took maybe 10 minutes start to finish, and would have taken less time if my wrist band had a readable bar code — the one bar code (out of the *4* different ones on the band) that I needed to check in was misprinted, so I had to enter my MRN manually.
Elevator Bank A was pretty stacked up, so we took the adjacent escalator back up to 3 to the Outpatient CT/MRI center.
The waiting area is about 4 times the size of the CT/MRI/Lab waiting are at Kelsey-Seybold’s main campus. And it was full. Maybe one or two open single seats.
Check-in was painless (and like the blood lab, I wasn’t charged, which makes me think I’ll be getting a bill for those. The CT alone should eat up the rest of my 2019 deductible, so that’s it for out-of-pocket for the rest of the year), and… lo and behold, you get to choose the beverage your oral contrast is mixed into from a suitable selection (for the record, I chose Raspberry Crystal Light yesterday, though the Sprite was tempting if I didn’t have the ostomy), and thus I didn’t have to explain that the barium smoothie style causes me to have a bag blowout (there’s your first poop reference of this post).
I was called to receive my quart cup of contrast a short time later. Then about an hour later, I was called for my pre-CT interview (to go over claustrophobia and reaction-to-iodine-IV-contrast issues) and the nurse taking me back for that noted that I have a port installed and would I like them to use it for the IV contrast instead of starting an IV.
Why yes. Yes, I would.
Two happy things right there.
Of course, while the nurse was getting the port hooked up to the tubing, that’s when my body decided that would be a good time to fill my bag with poop. So I got to visit the bathroom and deal with that. No blowout, though. Good enough. Less poop in me means better imagery, though, right?
Third happy thing: scrubs instead of gowns.
I was supposed to be in the machine at 6:15pm. It was about 6:30ish when I did, I think (I didn’t have my phone or watch with me, and in fact fell asleep in the recliner in the holding pen, er, room, they’d parked me in). The machine was routine, then they had to “de-access” my port and flush it.
Then out to the garage, up to 12, out of the garage, and back into the maze of twisty passages, all alike. Took me a bit to get to a road I recognized, and we were off, back to the office to retrieve my truck, then home.
So where are we? We met the new oncology team (minus the surgeon). I got inducted into the MDA system. I got poked. I got scanned. And now I wait a week or so for the team to come up with a plan.
It’s likely that if I’d been able to stay with my original team, I would have had surgery the first full week of this month, which would have been plenty of time to recover before Boat in March. That window is pretty much closed now, so I suspect I’ll be back on some form of chemo until after Boat. I’m disappointed, because I really would prefer to be without the bag come Boat Time, but we’ll do what we need to do. And as part of that plan, I would like to work (in some fashion) at the inaugural IndyCar race at COTA in March. after Boat. But I can’t make any decisions on that until we find out what the docs want to do.
And that’s where I am right now. The movement has begun again. I suspect once we get a plan together, things will move quicker.
Unlike the traffic getting to/from the Texas Medical Center area. I’m going to ask if, once we get started, I can do infusions and scans at the MDA Katy location, which is MUCH easier to get to (and closer). If so, fantastic. If not, well, we’ll just do what we have to do.
Is that a Grue?
(Postscript: truck test of parking garage. Well, I can get up through level 3 with it, but may run out of headroom above that level. For only a little more coin, I can let the valets deal with it if it comes to that.)