Postby BrownBagger » Fri Nov 11, 2016 2:06 pm
Well, as one of my favorite fictional characters of all time, Jim Anchower on The Onion, used to say, "It's been a long time since I've rapped at ya, amigos."
The past six months have been a real roller-coaster for me, but I'm still standing and still optimistic about the future, though it's getting increasingly complicated and uncertain.
Briefly, my lung mets have remained more or less stable for a few years, and we were just watching and zapping them if they started to act up. That's still the case, as far as I know, based on my last scan. However, about six or eight months ago, a tumor in my bronchial cavity showed up, and it's in a bad spot--at the juncture of the airway and threatening to block it. I've had several bronchoscopies (both flexible and rigid) to clear it out, in hopes that it might not come back. But it did. So we decided on a series of radiation treatments, delivered via the bronchoscope--one treatment a week for three consecutive weeks. I'm getting all this done at Sloan Kettering, by the way, which is a 5-hour drive from my home in Upstate New York. Not that I mind a little driving for the best care possible, but it does present some logistical challenges.
So, about a month ago my wife and I made the trip to Manhattan so that I could get the treatment at the hospital the next day. We drove to Poughkeepsie and then parked our car and took the train into the city. This is in part because it's pretty expensive to park in Manhattan overnight, and if my wife ever had to drive in Manhattan, it wouldn't end well. I actually like driving in NYC, but because they knock me out for the procedures, I'm not supposed to drive after being released from the hospital. And I comply. So, it's a combination of a drive, a train ride and a night in a hotel. If all goes well, you get out a few hours after you wake up the next day, and it's all good.
Unfortunately, when they got to the tumor, it was bigger than they expected, so they cut it out but in the process, perforated the bronchial wall, leading to a case of subcutaneous emphysema. So they didn't do the treatment, though they did keep me in the hospital overnight. My wife was able to stay in the room with me. Good thing, as hotels in NYC are expensive and hard to find on short notice. Two weeks later, we were back for more, but this time I almost died on the table after they put me under. Seems I had a bad reaction to my BP meds while dehydrated. My BP plummeted and they had trouble getting it back up. They thought I had a heart valve defect, but an echocardiogram the next day showed a healthy heart. They switched up my BP meds and I feel a whole lot better in general. But they kept me in the ICU for two nights; my poor wife slept in the chapel.
So the other day, we headed back down to Manhattan for hopefully the first treatment. And it went well. We checked into the hospital at 5:45 a.m. and I was back on the street by noon. We got home by 6:30. Not a bad couple of days. Once you get used to spending $200 for a cramped hotel room with a communal bathroom, NYC isn't a bad place to hang out. There's lots of good food and things to do, and not all of it is expensive. And, you can get anything you want, including a lot of fresh fruit on the street for cheap. Great transportation systems and walking. I have my second treatment next week, and it should go off without incident, now that they've got my BP thing figured out. We skip a week for Thanksgiving, and wrap this phase up on November 30. Hopefully the tumor will take a break and give me some mental and physical relief. If not, I still have radiation and chemo options available. At this point, it's all about buying time.
Anyway, I don't know as many members as I used to when I hung around the board a lot more. Just not really in the mood lately, though I thought I did owe my friends an update.
I do want to plug Sloan-Kettering and everyone who works there. The standard and level of care and attention to detail is unmatched in my experience. Not even close. They take special care of everyone, and at least in my case, I think it shows.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.