9.14.2015

Fiddle Dee Dee

The hits just keep on a comin’ and I keep swearing to myself that I’m going to stop writing if all I have to offer is bad news. I don’t want to leave you in the lurch, however, so I’ll give another update and we’ll see where we stand next week.  As you are no doubt aware, I am on a ridiculous run of bad luck. For the past 8 (count ‘em) encounters with the doctors, something has gone wrong. I show up for treatment, but my biopsy slides are bad, I show up get a stent replaced, and find out that my intestines are blocked, I show up for a routine 4-hour treatment, but need blood, which turns it into a fourteen-hour ordeal. This is starting to get to me. Also, this is the fourth week in a row that I will be in Houston. All of this against a backdrop of eight weeks without sleep, and 3-4 weeks of not really being able to eat. I’m finding it hard to find a foothold from which I can reset myself. 

Last week as a doozy. I was set to have a new duodenal stent installed and my biliary stent replaced. We were not really advised on options or implications for that type of works, but four doctors were standing in front of me when I was informed, so I assumed they knew what they were talking about.

As I was in the bed, prepped and ready to go into the procedure, the doctor asked if we were fully aware of what our decision meant- of course we did not. We spent the next 2 hours on phones and in person with several doctors and nurses on our team to discuss what was going going on. The short answer is that the two new metal stents that were being installed have about a six month life span- beyond that there are some tricks and work around that may buy a few weeks, but they are essentially the end of the line. The other option is a bypass of the duodenum, but the doctor’s consensus is the surgery is takes a lot out up front, and that I might not be able to survive that and untreated cancer at the same. The other issue is that there is the real possibility that no surgeon would take on the case anyway. In the end, we accepted that the stent gave me the best chance to live the longest in the best condition.

As I noted in the quote from Argo a few weeks ago, there are no good options anymore. We are now just making decisions day to day (but aren’t we all). The tantalizingly cruel possibility is that this wonder drug might work in 3 months, but I would still die due to the stents. But Fiddle-Dee-Dee, that kind of thought is for another day.

The next day on the way home, I started throwing up in the Atlanta airport. While this is a perfectly natural reaction to being in the Atlanta airport, it was disconcerting for obvious reasons in this case. When I got home, I continued to throw up over night and couldn’t even keep liquids down. This meant a trip to the Memorial ER. Our doctors in Houston were hoping they would do a quick endoscopy to see if there was anything wrong with the stent. Of course, the locals thought it would be a better idea to run me through six doctors, run a CT scan, and admit me. The scan showed that the stent was working fine. The next problem was getting out of there. Because I was no one’s patient, I ended up seeing every doctor in the building and telling them my entire life story, the doctors would then leave and never be seen again. This is all well and good, until it was time to leave- it took 8 hours of pestering nurses, calling doctors outside of the hospital and thinking about being rude to finally get out. Thankfully, we were released at 3:30 on Friday afternoon.

My last view of the beach...until...

Although I would have preferred endscopy to CT, we did then get the benefit of the extra level of detail. In short- not good. What was a solid mass tumor is has grown aggressively, more than doubling in size, and is spreading. I’ll save you the details, but just like me, the tumor has not been sleeping. In a sense this vindicates the stent decision as this untreated, unchecked tumor would surely kill me before I recover from a bypass operation.

The silver lining to the week cam the instant we left the hospital. D and I jumped in my car, and drove straight down to Duany-land (Seaside, for the initiated). My mother had summoned my brothers and all of my nieces and nephews and rented a house for the weekend. We spent a wonder couple of days down there with the family- it truly was a blessing. I got down to the beach a couple of times with all of the kids and my bothers, and got my toes in the water. The rest of the time I camped out on the sofa watching football (Roll Tide) dozing into and out of naps. I managed to keep all of my food and drinking down and my night sweats largely abated. It was a very special time that I’ll never forget.

As for now, I cam back and got in the work saddle this morning, now it’s off to CHA for a flight to Houston (YAY!!!! or something like that). With any luck I’ll be back tomorrow night, but I rather suspect it will be Wednesday – fingers crossed, please!

I love all of yall. Have a great week and enjoy this beautiful weather!

Let the record show that was unable to defend my 40-yard dash title against my bother. He wins by default. 

1 comment:

  1. Don't know much else to say except that I think about you and your family every day.
    Alisa Watkins

    ReplyDelete