Sorry for missing last week- the list of excuses is long and impressive. The bigger issue is that it is becoming increasing difficult for me to write- I can’t seem to find focus, and as I’ve mentioned before it’s not in me to write week after week about how tough things are. Consequently, I’ve decided that trying to continue weekly posts is a bridge too far. I hope to weigh in here and there, but the posts will likely come at random moments of inspiration. If you would like “official updates” please visit my Caringbridge site. (You have to create a user login or sign in with Facebook to access, sorry). If you need an invite, please send me your email address and I’ll get you taken care of.
The short story is that I went to Houston a couple of weeks ago for what was supposed to be a couple of days, and I’m still here. (Yes, I was here during the Alabama v. Ole Miss game. Fortunately, I was in the ICU pumped full of pain meds while that debacle transpired). We're meeting with the doctor tomorrow to talk about a plan and how it might unfold. If it doesn't involve a healthy dose of Chattanooga there will be consequences and repercussions (watch out for salty language on that link). We'll see how it goes.
In the meantime, I appreciate all of your thoughts, prayers and best wishes. I've been doing my best to respond to everyone, but if I have somehow let you slip through the cracks, please accept my apologies and know that I appreciate and love you.
...on Urban Design in Chattanooga. (and the Big C)
9.28.2015
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.
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.
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.
9.07.2015
More Than I Can Stomach
I am getting tired of giving theses crappy updates. Yes, that sentence is ambiguous, but it actually works on every level of interpretation. I sincerely hope that one these days I’ll be able to give you some happy and uplifting news.
When last I left you, I was all set to have the stent in my liver replaced. This is a pretty straightforward procedure, and there was great promise that this would address a number of symptoms that were making life unpleasant. It’s typically performed in an afternoon, they put my down for a nap, do the deed, and thirty minutes after I wake, I’m good to be released. Would it actually go down like that? Yes, but.
When I came to, our favorite Dr. Lee reported that the stent had been exchanged with no problem. However, while he was down there, he did find some other issues. Apparently, the tumor is growing and inflamed and causing a blockage. The duodenum, which is the very top portion of the small intestine, is about 90% blocked. While he was down there he also aspirated about 2 cups of undigested matter from my stomach that was just sitting around.
There are two solutions to dealing with the blockage: a duodenal stent, or a bypass surgery. After consulting with the team, the decision was made to go with the stent. The only issue is that the first slot for this procedure wasn’t until the day after Labor Day. From Thursday until Tuesday I was told that I needed to stick with a “soft food” diet. I was also told to hope that the duodenum didn’t get fully blocked- apparently it’s a not good look when food and water can go in but can’t get out.
So we returned to Chattanooga for the first college football weekend of the year, and a holiday weekend to boot. When I got home I started noting items not included in a “soft food” diet: ribs, chicken wings, pulled pork, hamburgers, pork belly, and ribs. Labor Day and college football are synonymous with food. Not for me. Not this year.
The Bama game was good. I thought we looked pretty solid. I still see some weakness in some of our usual soft spots. Hopefully coach can get those addressed sooner rather than later.
I’m back to Houston today (again). Hopefully this stent will do the trick, and I can resume proper football food eating form. Fingers crossed.
When last I left you, I was all set to have the stent in my liver replaced. This is a pretty straightforward procedure, and there was great promise that this would address a number of symptoms that were making life unpleasant. It’s typically performed in an afternoon, they put my down for a nap, do the deed, and thirty minutes after I wake, I’m good to be released. Would it actually go down like that? Yes, but.
When I came to, our favorite Dr. Lee reported that the stent had been exchanged with no problem. However, while he was down there, he did find some other issues. Apparently, the tumor is growing and inflamed and causing a blockage. The duodenum, which is the very top portion of the small intestine, is about 90% blocked. While he was down there he also aspirated about 2 cups of undigested matter from my stomach that was just sitting around.
There are two solutions to dealing with the blockage: a duodenal stent, or a bypass surgery. After consulting with the team, the decision was made to go with the stent. The only issue is that the first slot for this procedure wasn’t until the day after Labor Day. From Thursday until Tuesday I was told that I needed to stick with a “soft food” diet. I was also told to hope that the duodenum didn’t get fully blocked- apparently it’s a not good look when food and water can go in but can’t get out.
So we returned to Chattanooga for the first college football weekend of the year, and a holiday weekend to boot. When I got home I started noting items not included in a “soft food” diet: ribs, chicken wings, pulled pork, hamburgers, pork belly, and ribs. Labor Day and college football are synonymous with food. Not for me. Not this year.
The Bama game was good. I thought we looked pretty solid. I still see some weakness in some of our usual soft spots. Hopefully coach can get those addressed sooner rather than later.
I’m back to Houston today (again). Hopefully this stent will do the trick, and I can resume proper football food eating form. Fingers crossed.
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