As I write this, we're on the last night in the hotel in Houston, for the inaugural stop of Cancer Tour 2012. It's not a glamorous stop, Houston, but the other stops include Austin, Round Rock and my rectum, so at worst, it's like the fourth most glamorous stop.
Yes, I just implied that Houston is less glamorous than my rectum. Sorry, Houstonites. This really ain't my kinda town, based on what little I've seen of it. Although hat tip for 59 Diner, an awesome local chain we loved so much that we went both nights we were here for dinner. I got the big country breakfast (sausage, biscuits and gravy, french toast, 3 eggs and hash browns - it came on three plates!) on night one and a chili cheese dog on night two. Reese's shake on night one, Black Cow (root beer, ice cream, chocolate syrup) on night two. For the record.
Anyway... the trip has been brief but eventful. We're staying at an Extended Stay America for $100/night (that's the "reduced" medical rate) and I was expecting something nice, maybe along the lines of the rooms I had at St. David's. Instead, we're just above Motel 6 here. It's decent enough, but very low-rent. I'll say this for them, their wi-fi works free and consistently. Beyond that... not a great place to stay long-term, and if we do wind up coming back to Houston, we'll probably be looking elsewhere for accommodations.
MD Anderson, sold to me as the greatest cancer center on the planet, was also a little underwhelming. I got a little spoiled at St. David's in Round Rock. The nurses there are without exception amazing, friendly, easy to talk to and super easy to find when you need them. The doctors have all been great, and I was feeling very comfortable with the notion of chemo, radiation and cancer treatment through these folks.
MD Anderson, in contrast, is huge. Like Dallas/Fort Worth airport huge. They've got pagers and systems and hundreds, maybe thousands, of staffers, and getting in feels very organized, but also very sterile and hands-off. The nurses don't have that personal touch because they're taking 5-6 people at a time. The doctor I've met had us waiting for an hour and a half because he'd been called to the OR and that threw his entire schedule off.
In fairness, they do a very good job. The MRI I had was relatively painless and easy, the doctor (when he did come to talk to us) did a good job explaining everything, and I'll forgive him shoving a tube somewhere uncomfortable for a not-insignificant amount of our time together because that's his job, and he did get a good look at the tumor in the meantime.
The good news is, no colostomy before surgery, which was looking likely. So no surgery, then recovery, which means chemo and treatment can start soonish. The bad news is, a permanent colostomy after surgery now looks like a lock, which is honestly in worst-case scenario territory for me. I'm sure I'll get used to it, but in terms of things I feared most when I got this diagnosis, having to poop into a bag for the rest of my life was pretty damn high on the list.
Tomorrow we see their oncologist to talk about the treatment. The treatment they recommend for a tumor that's the size of mine is actually chemo first, then chemo-radiation, then surgery. So the timetable has expanded a bit, from 9 months to closer to a year. And the chemo, the harder stuff with more side effects, will be right up front. But that could be good, I'm at my strongest now, so I'd kind of rather have the hardest medicine to deal with now before I've been worn down.
The other potential hitch is that ideally, they'd like to everything through their center. But I think I have a good chance of convincing: A) MD Anderson that I'm better off being closer to home for such intensive and long-term care and B) Texas Oncology to do the chemo then radiation thing, which is the reverse of how they usually do things.
Cross your fingers for me that those two things are true. Because while I'm actually pleased by the notion of having a more experienced colorectal surgeon working on my tumor when the time comes, the notion of spending five and a half weeks in Houston for chemo-radiation, and two days every two weeks for two months in Houston for chemo, is pretty high up on my "worst case" scenario list as well.
But if that's what it takes, that's what we'll do. I'm just hoping that we'll be able to do most of the regular treatment in Austin and then the surgery in Houston.
Tuesday, May 15, 2012
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1 comment:
I'll start a petition to get your treatment handled in Austin if you'd like. :)
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