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.
8.31.2015
Christian's Crimson Corner
As some of you know, I did not start this blog in March when I got cancer. I’ve been writing in this space for almost five years now. Up until this spring, the primary topic was urban design in Chattanooga, but as you can imagine I wandered hither and yon over such a long period. Last week I had the freakiest moment of déjà vu/insight/prescience/whatever-you-want-to-a-call-it relating to something I wrote exactly a year ago. I’m freaked out.
I spent a large portion of the past few weeks working with my doctors to find the right type of pain relief, this set against the backdrop of pretty serious constipation and a number of drugs that made me very drowsy. I’m sure you can see where this is going, but one afternoon while I was medicated and sitting on the throne, I fell asleep. Fortunately, I woke up before I fell off and hurt myself. I was immediately reminded, however, of something I wrote in a post exactly one year ago (long before my diagnosis): Click this link and read the last paragraph. Mind. Blown. (but I’m still no Elvis)
Update
The sponsor accepted the slides we resubmitted, so we were a go for the trial! After a couple of productive days with my friends in Iowa, I was all set to swing back through Houston to get the new drug. The plan was easy and straightforward, gets some labs first thing, have a quick chat with the doctor, receive the treatment via IV over the course of an hour, then bounce to the airport and be asleep in my own bed before midnight. As you might expect, I wasn’t getting off that easy. My labs showed that one particular blood number was low. To rectify that, I had to have two units of blood transfused (two hours each), and then have my blood retested. I passed the next test, and received the drug well after sundown. Needless to say, I did not get to sleep in my own bed that night.
True Story
The overwhelming majority of my chemotherapy treatments this summer were on Mondays. It just so happened that on Mondays at TN Oncology, a group of volunteers from a local church (some of whom are cancer survivors) prepare sack lunches for those who are undergoing treatment. They’re really nice guys that are always cracking jokes as they try to lighten the mood.
On one particular Monday, I was holding “office hours” with a colleague in order to get a little bit of work done (which is to say that I have a witness). The ringleader of the volunteers is a survivor who always wears some kind of silly headgear. On this day, it was some Florida Gators gear. I made some form of good-natured, off-handed joke about that being the worst hat in his repertoire. He paused and responded “Well, we all know that God is a Gator fan, all of the oceans of the world, and skies above are blue, and his most beautiful creations- sunsets- are blue and orange. God’s definitely a Gator.”
To which I could only respond. “No, it’s clear that God is a ‘Bama fan. That's why he made Christ’s redeeming blood flow Crimson. He stared a me for a second, grasping for something to say, but in the end there was not much room for a comeback.
This wonderful week marks the beginning of the college football season. This week, everyone is equal. This week, everyone’s dreams are still alive. This is the final week of a 35-week wait. This is the last delicious moment of anticipation.
Alabama opens up against Wisconsin in a game played in Dallas. I gave some thought to going to the game as I will be in Texas this week anyway, but thought better of it. While I love going to games, there is also much to be said for staying at home, watching College Game Day, and sitting on the couch all day trying to see how much football I can watch.
I just fell asleep mid-sentence... that’s a cue to wrap it up. Ya’ll have a great week!
(and Roll Tide Roll!)
I spent a large portion of the past few weeks working with my doctors to find the right type of pain relief, this set against the backdrop of pretty serious constipation and a number of drugs that made me very drowsy. I’m sure you can see where this is going, but one afternoon while I was medicated and sitting on the throne, I fell asleep. Fortunately, I woke up before I fell off and hurt myself. I was immediately reminded, however, of something I wrote in a post exactly one year ago (long before my diagnosis): Click this link and read the last paragraph. Mind. Blown. (but I’m still no Elvis)
Update
The sponsor accepted the slides we resubmitted, so we were a go for the trial! After a couple of productive days with my friends in Iowa, I was all set to swing back through Houston to get the new drug. The plan was easy and straightforward, gets some labs first thing, have a quick chat with the doctor, receive the treatment via IV over the course of an hour, then bounce to the airport and be asleep in my own bed before midnight. As you might expect, I wasn’t getting off that easy. My labs showed that one particular blood number was low. To rectify that, I had to have two units of blood transfused (two hours each), and then have my blood retested. I passed the next test, and received the drug well after sundown. Needless to say, I did not get to sleep in my own bed that night.
 |
| Sadly, chemo with Bear Bryant visualization was ineffective. Let's see if a modern trial drug with Coach Saban visualization gives us the opportunity to be successful. |
The overwhelming majority of my chemotherapy treatments this summer were on Mondays. It just so happened that on Mondays at TN Oncology, a group of volunteers from a local church (some of whom are cancer survivors) prepare sack lunches for those who are undergoing treatment. They’re really nice guys that are always cracking jokes as they try to lighten the mood.
On one particular Monday, I was holding “office hours” with a colleague in order to get a little bit of work done (which is to say that I have a witness). The ringleader of the volunteers is a survivor who always wears some kind of silly headgear. On this day, it was some Florida Gators gear. I made some form of good-natured, off-handed joke about that being the worst hat in his repertoire. He paused and responded “Well, we all know that God is a Gator fan, all of the oceans of the world, and skies above are blue, and his most beautiful creations- sunsets- are blue and orange. God’s definitely a Gator.”
To which I could only respond. “No, it’s clear that God is a ‘Bama fan. That's why he made Christ’s redeeming blood flow Crimson. He stared a me for a second, grasping for something to say, but in the end there was not much room for a comeback.
This wonderful week marks the beginning of the college football season. This week, everyone is equal. This week, everyone’s dreams are still alive. This is the final week of a 35-week wait. This is the last delicious moment of anticipation.
Alabama opens up against Wisconsin in a game played in Dallas. I gave some thought to going to the game as I will be in Texas this week anyway, but thought better of it. While I love going to games, there is also much to be said for staying at home, watching College Game Day, and sitting on the couch all day trying to see how much football I can watch.
I just fell asleep mid-sentence... that’s a cue to wrap it up. Ya’ll have a great week!
(and Roll Tide Roll!)
8.24.2015
As the Trial Turns
Friday night turned into Saturday morning, and there I was- lying on my side in a hospital bed while this guy had his arm halfway up my bum. He finished up about 1:30am and that was the end of a seven and a half hour odyssey at Erlanger’s* Emergency Room. NOT HOW I PLANNED TO START MY WEEKEND. As I mentioned last week, my pain meds have caused me to be full of “it”. Throw in some hemorrhoids and profuse bleeding, and you get to spend the night in a “healthcare” facility instead of with your children. In the end (no pun intended) they had no answers for me, but thought I looked good enough, so they sent me home.
Saturday and Sunday were spent in ‘round-the-clock discomfort (as was much of the past week to be fair). The sole exception was the usual sanctuary- my son's soccer games (but even that silver lining had a literal storm cloud). Yes, the CFC U11 boys had another tournament this week. Thankfully, however, we hosted this one in Chattanooga. We played a couple of games in the muggy heat of Saturday. Despite the weather, it was just what the doctor ordered. A final pool play game and championship game were planned for Sunday, but as the storms rolled in they were cancelled. When the cancellation was announced, there was the typical young boy tantrum response to the rain-out: pouting, crying, kicking, screaming, whining, and equipment throwing. My son was also upset.
As the Trial Turns…
On the continuing saga of the clinical trial, this is a big week- one way or another. As you may know, we've been trying to get started on a clinical trial for a few weeks. We were lucky to get one of the final spots in the trial, and have been trying to tick off all of the boxes to meet the program requirements. The latest problem is that we weren't able to get a sufficient number of slides containing live cancer cells in my last biopsy. We've since gathered all of the “backup” slides and submitted them in hopes that we'll meet the threshold. We''ll find out early this week if we've satisfied those requirements.
In the meantime, it’s been thirty-five days since my last treatment. Without treatment, the tumor is presumably growing (because that’s what tumors do), and every day that passes is another step in the wrong direction. During my prognosis in March, I was told that a patient at my stage typically has six months to live without treatment. Put in that context, this has been a long time to go without treatment. Consequently, this week, we will fish or cut bait. If we can finally start to the trial, we will. If there is another delay, then I think we will likely bail on this particular trial, start another course of traditional treatment, and start looking for another trial.
Obviously, none of this is ideal. From the beginning, however, I’ve felt that before this is over I will experience high highs, low lows, and everything in between. As with any great movie, the worse position the good guy is put into, the better the ending when he eventually triumphs. When I get bad news, it just makes me think of how much better the story will be when I win.
Lest I end on a down note (again), I offer some good news. D and I celebrated our wedding anniversary tonight! How in the world she has managed to put up with me for lo these many years is one of humankind's great questions. This year, we attempted to right a wrong. We had dinner at St. John's- as we have for all but one of our anniversaries. The one year we decided to switch it up and go somewhere else was also the year that I was diagnosed with cancer. As we are both mildly superstitious, there was no way in the world we were going anywhere other than the Saint. Hopefully, we have set the grand scheme of the universe back in order, and things will return to normal shortly. We'll see...
Erlanger Emergency Room playlist: There is no music or joy of any form in this place.
*This was, by far, the worst experience I have had in any hospital (and I‘ve been in a few recently). A trip to the hospital is never going to be a pleasant experience, but Erlanger was truly awful. Dear Lord, please don’t let me end up there again.
Saturday and Sunday were spent in ‘round-the-clock discomfort (as was much of the past week to be fair). The sole exception was the usual sanctuary- my son's soccer games (but even that silver lining had a literal storm cloud). Yes, the CFC U11 boys had another tournament this week. Thankfully, however, we hosted this one in Chattanooga. We played a couple of games in the muggy heat of Saturday. Despite the weather, it was just what the doctor ordered. A final pool play game and championship game were planned for Sunday, but as the storms rolled in they were cancelled. When the cancellation was announced, there was the typical young boy tantrum response to the rain-out: pouting, crying, kicking, screaming, whining, and equipment throwing. My son was also upset.
As the Trial Turns…
On the continuing saga of the clinical trial, this is a big week- one way or another. As you may know, we've been trying to get started on a clinical trial for a few weeks. We were lucky to get one of the final spots in the trial, and have been trying to tick off all of the boxes to meet the program requirements. The latest problem is that we weren't able to get a sufficient number of slides containing live cancer cells in my last biopsy. We've since gathered all of the “backup” slides and submitted them in hopes that we'll meet the threshold. We''ll find out early this week if we've satisfied those requirements.
In the meantime, it’s been thirty-five days since my last treatment. Without treatment, the tumor is presumably growing (because that’s what tumors do), and every day that passes is another step in the wrong direction. During my prognosis in March, I was told that a patient at my stage typically has six months to live without treatment. Put in that context, this has been a long time to go without treatment. Consequently, this week, we will fish or cut bait. If we can finally start to the trial, we will. If there is another delay, then I think we will likely bail on this particular trial, start another course of traditional treatment, and start looking for another trial.
Obviously, none of this is ideal. From the beginning, however, I’ve felt that before this is over I will experience high highs, low lows, and everything in between. As with any great movie, the worse position the good guy is put into, the better the ending when he eventually triumphs. When I get bad news, it just makes me think of how much better the story will be when I win.
 |
| Overachieving 101: by Christian S. Rushing |
Lest I end on a down note (again), I offer some good news. D and I celebrated our wedding anniversary tonight! How in the world she has managed to put up with me for lo these many years is one of humankind's great questions. This year, we attempted to right a wrong. We had dinner at St. John's- as we have for all but one of our anniversaries. The one year we decided to switch it up and go somewhere else was also the year that I was diagnosed with cancer. As we are both mildly superstitious, there was no way in the world we were going anywhere other than the Saint. Hopefully, we have set the grand scheme of the universe back in order, and things will return to normal shortly. We'll see...
Erlanger Emergency Room playlist: There is no music or joy of any form in this place.
*This was, by far, the worst experience I have had in any hospital (and I‘ve been in a few recently). A trip to the hospital is never going to be a pleasant experience, but Erlanger was truly awful. Dear Lord, please don’t let me end up there again.
8.17.2015
Septimana Horribilis
The last sentiment I expressed last week was that I didn’t want to go out drugged up in a hospital bed in Houston. Within three hours of that post going live, that’s exactly where I ended up. Don’t tempt fate boys and girls.
I was caught off guard, that’s all there is to it. For the past weeks I’ve bounced around the globe, landing in a place long enough to take care of business, then heading off for the next port of call. Last week was another trip to MD Anderson for a couple of procedures necessary to get my new treatment started. I was set for a brain scan and another liver biopsy. I’ve never had a brain MRI, but wasn’t too worried about it. I had a liver biopsy a couple of months ago- it made me sore for a couple of days, but it wasn’t too bad. This appeared to be another in a string of “routine” trips. The plan was to show up, have my procedures in the morning and fly out that night.
As we rolled into Houston, my head was not in the game. I was not mentally prepared. I did not have my game face on. I didn’t even have a playlist prepared. The MRI went off without a hitch. We got to the Mays Clinic early, and the biopsy folks were ready to roll (a minor miracle that provided the promise of a couple hour buffer before the flight). 10am on Monday morning, that’s when the week turned for the worse.
As I returned to the land of the lucid after the procedure, my biopsy site was sore- considerably worse than the first go ‘round. In and of itself, this wasn’t a very big deal. The fact that I immediately spiked a temper was much more troubling. I spent the remainder of the three-hour observation period in pain and cold sweats. For the pain there was intravenous painkiller. For the fever, there was no answer. As I was in an outpatient clinic that was about to close, I was treated to a two-block ambulance ride to the Emergency Center for observation. New scene, same result. All of my labs, x-rays and urine analysis were great, yet I still had this phantom fever. The folks at the EC got bored with me, and I spent the rest of the night posted up in a hospital bed on the observation floor hooked up to an IV.
On Tuesday morning we still didn’t have answers, but they thought I was well enough to go home (which was fine by me). For the next several days, the fever came and went away. What also went away was my IV painkiller. Once we got home, the pain from the biopsy got pretty rough. The medicine I had previously been prescribed wasn’t doing much. Due to the elusive fever, some questions about the pain at the biopsy site, the rise of pain at other sites, the involvement of my liver, and some stomach issues, selecting new pain medication became a bit of an ordeal. In the end, I went through the whole week (and consequently the weekend) without an effective pain management strategy. It is safe to say that this sucked.
(Before this gets out of hand, ladies, please don’t roll your eyes at me. I am fully aware and in awe of what ya’ll are capable of. What D went through with my boys surely puts my little ouchies to shame. For the purposes of this post, however, let’s assume that I’m writing in reference to the “male scale” of pain tolerance).
I like to think of myself as a reasonably tough man. I’ve always been pretty good about playing through pain, and not letting minor inconveniences get in the way of performing whatever task lies ahead. What my doctors are trying to pound into my thick skull is that they are not awarding any medals for pain tolerance. I will try to keep that in mind, but I’m still very keen to spend time with the boys and to work. Obviously, those activities require some level of clarity and focus. I guess I'm just not very keen on spending the coming months strung out on pain meds.
Fortunately, we spent the weekend down in Birmingham doing something I love – watching Spencer play in a soccer tournament (he had a few goals, a couple of them were cracking- one in particular was truly special). This also afforded us the opportunity to spend some time with the Chewnings, and My-Man-Fiddy-Grand, Dr. Joe C. Given a couple of days together, we talked through my issues and have developed a strategy we think will work for longer-term pain control. I any event, I was pleased to see the end of this septimana horribilis, and the beginning of a new week full of promise.
I came to another set of realizations today. The first is that my pillbox is too small for all of the meds I'm taking. I then realized that I actually have a pillbox. What am I, 90? Apologies to my 90-year-old friends with pillboxes, but I’m not supposed to be with you just yet. (But can you help me find one of those sweet HurryCanes?)
I will leave you with this- several of the pills in my box are designed to counteract the constipation that comes with taking painkillers. Consequently, everyone who has ever claimed that I’m full of “it” is now officially correct. Congratulations.
I love ya'll, have a great week!
Update: I was set to fly to Houston today to start my trial therapy. I got a call this morning, and the trial has been delayed. The slides from the biopsy they sent to the sponsor have too much necrotic material in them. We’re checking to see if MDA took enough of a sample to prep some new slides. If so, we’re good. If not, I get to have another biopsy. It’s tough to be too upset that there is too much necrosis though. Either way, next time they see me, I will have my game face on!
Soundtrack for starting a new week: Dreams, Wind Up Dream, Dream On, Dreamer.
I was caught off guard, that’s all there is to it. For the past weeks I’ve bounced around the globe, landing in a place long enough to take care of business, then heading off for the next port of call. Last week was another trip to MD Anderson for a couple of procedures necessary to get my new treatment started. I was set for a brain scan and another liver biopsy. I’ve never had a brain MRI, but wasn’t too worried about it. I had a liver biopsy a couple of months ago- it made me sore for a couple of days, but it wasn’t too bad. This appeared to be another in a string of “routine” trips. The plan was to show up, have my procedures in the morning and fly out that night.
As we rolled into Houston, my head was not in the game. I was not mentally prepared. I did not have my game face on. I didn’t even have a playlist prepared. The MRI went off without a hitch. We got to the Mays Clinic early, and the biopsy folks were ready to roll (a minor miracle that provided the promise of a couple hour buffer before the flight). 10am on Monday morning, that’s when the week turned for the worse.
 |
| I might have to sue these guys for stealing my line. |
As I returned to the land of the lucid after the procedure, my biopsy site was sore- considerably worse than the first go ‘round. In and of itself, this wasn’t a very big deal. The fact that I immediately spiked a temper was much more troubling. I spent the remainder of the three-hour observation period in pain and cold sweats. For the pain there was intravenous painkiller. For the fever, there was no answer. As I was in an outpatient clinic that was about to close, I was treated to a two-block ambulance ride to the Emergency Center for observation. New scene, same result. All of my labs, x-rays and urine analysis were great, yet I still had this phantom fever. The folks at the EC got bored with me, and I spent the rest of the night posted up in a hospital bed on the observation floor hooked up to an IV.
On Tuesday morning we still didn’t have answers, but they thought I was well enough to go home (which was fine by me). For the next several days, the fever came and went away. What also went away was my IV painkiller. Once we got home, the pain from the biopsy got pretty rough. The medicine I had previously been prescribed wasn’t doing much. Due to the elusive fever, some questions about the pain at the biopsy site, the rise of pain at other sites, the involvement of my liver, and some stomach issues, selecting new pain medication became a bit of an ordeal. In the end, I went through the whole week (and consequently the weekend) without an effective pain management strategy. It is safe to say that this sucked.
(Before this gets out of hand, ladies, please don’t roll your eyes at me. I am fully aware and in awe of what ya’ll are capable of. What D went through with my boys surely puts my little ouchies to shame. For the purposes of this post, however, let’s assume that I’m writing in reference to the “male scale” of pain tolerance).
I like to think of myself as a reasonably tough man. I’ve always been pretty good about playing through pain, and not letting minor inconveniences get in the way of performing whatever task lies ahead. What my doctors are trying to pound into my thick skull is that they are not awarding any medals for pain tolerance. I will try to keep that in mind, but I’m still very keen to spend time with the boys and to work. Obviously, those activities require some level of clarity and focus. I guess I'm just not very keen on spending the coming months strung out on pain meds.
Fortunately, we spent the weekend down in Birmingham doing something I love – watching Spencer play in a soccer tournament (he had a few goals, a couple of them were cracking- one in particular was truly special). This also afforded us the opportunity to spend some time with the Chewnings, and My-Man-Fiddy-Grand, Dr. Joe C. Given a couple of days together, we talked through my issues and have developed a strategy we think will work for longer-term pain control. I any event, I was pleased to see the end of this septimana horribilis, and the beginning of a new week full of promise.
 |
| 24 hours in hospital bed didn't do much for my hair. Sometimes a cut is just the thing to help with a fresh start. |
I came to another set of realizations today. The first is that my pillbox is too small for all of the meds I'm taking. I then realized that I actually have a pillbox. What am I, 90? Apologies to my 90-year-old friends with pillboxes, but I’m not supposed to be with you just yet. (But can you help me find one of those sweet HurryCanes?)
I will leave you with this- several of the pills in my box are designed to counteract the constipation that comes with taking painkillers. Consequently, everyone who has ever claimed that I’m full of “it” is now officially correct. Congratulations.
I love ya'll, have a great week!
Update: I was set to fly to Houston today to start my trial therapy. I got a call this morning, and the trial has been delayed. The slides from the biopsy they sent to the sponsor have too much necrotic material in them. We’re checking to see if MDA took enough of a sample to prep some new slides. If so, we’re good. If not, I get to have another biopsy. It’s tough to be too upset that there is too much necrosis though. Either way, next time they see me, I will have my game face on!
Soundtrack for starting a new week: Dreams, Wind Up Dream, Dream On, Dreamer.
8.10.2015
The Trip (Part II)
As of this weekend, football (soccer) is back. The mighty Blues won their first game of the year and Villa lost. We took the oldest to Birmingham (AL) for his CFC U-11 team’s first friendlies of the fall session. That night we got back to CHA in time to join 18,000 of our closest friends for the NPSL National Championship game. The big CFC boys were up for the challenge, but in the end fell one short in extra time- a valiant effort (and a great effort from the community in supporting the team). In just four weeks when the other football starts, all will be right with the world.
The latest scans have shown that my tumor is growing. Obviously, the chemotherapy is not working. While this is not great news, it opens the door for me to participate in a clinical trial for an experimental immunotherapy drug. This is how it works.
Were this trial not available, the next course of action would have been to switch the chemo to a cocktail that has about a 20% chance of being effective. In this case effectiveness means that it generally works for 2-3 months. Beyond that, we would consider other options such as radiation. In any case, each time we are forced to choose a new option, it has a smaller chance of being effective and/or has worse side effects.
The trial also has about a 20% success rate. In this case, however, success means that the tumor goes away. Genetic testing of my tumor shows that I have two mutations. It is my understanding that one of them has shown some level of responsiveness to treatment. The other one is a bitch- apparently, it is unresponsive to treatment and results in tumors that are, in my doctor’s words, “aggressive and painful”.
As the line from Argo goes, “There are only bad options. It’s about finding the best one.” On one hand, it is depressing to think that Shaq is more than twice as likely to make a free throw than my treatment is to work.
On the other hand, my chances are on the Mendoza line (which is the minimum acceptable threshold for major league hitters). As we noted in a past post, however, I'm not getting too hung up on the numbers. Besides, If Ben flipping Affleck can smuggle six Americans disguised as a film crew past the Iranian Revolutionary Guard, I should be able to beat a case of cancer. On the even brighter side, I don’t have to deal with chemo for the time being...so I've got that going for me...which is nice.
A Picture is Worth 1000 Words
Wow, Istanbul feels like a lifetime ago- I can hardly remember the details to write about it. I promised part two, however, so here goes.
After Ayasofya, I walked across Sultanhamet Park to visit the Sultan Ahmed Mosque (better know as the Blue Mosque). It was stunning:
I then made my way to Fatih to visit the largest and grandest mosque in the city- Süleymaniye:
A few blocks away is my personal favorite, the Şehzade Mosque:
The next day I did a food tour then visited Grand Bazaar (which you may recognize from my favorite new Bond movie “Skyfall”):
Afterwards, I checked out the Basilica Cistern (which you may recognize from my favorite old Bond movie “From Russia With Love”):
I capped off my Friday afternoon with a cruise on a commuter ferry across the Bosphorus. When I set foot on the other shore I was in Asia, and had officially satisfied the requirements of the Three Week,Three Four Trip, Three Continent adventure:
That night I captured the best image of the trip – The Blue Mosque under the Blue Moon:
On Saturday I decided that I was done with the touristy Sultanhamet and headed for the more hipsterish Beyoglu and trendy Besiktas. Two of the city’s most iconic public spaces are here: Taksim Sqaure and the İstiklâl Caddesi. Despite the government calls to steer clear of the crowds, I could not resist the siren song of vibrant urban space.
That night I decided to splurge (because, you know, I’m worth it), and booked the penthouse suite of some Euro-chic hotel. The view did not suck:
I woke up on Sunday and took the subway to Ataturk (sorry D*). Upon my arrival at the airport I found, to my amazement and delight, that I scored an upgrade to Delta One for the 10-hour flight from Istanbul to New York. Not a bad way to end the trip.
*Of course, D was concerned about my well being given the travel advisories and the fact that they had a couple of bomb scares while I was there. She asked "Is that how you want to go? Getting blown up in a subway in Turkey?" Before I could develop a measured response, I blurted out "Better here than drugged up in a hospital bed in Houston."Apparently my subconscious has given this some thought. Maybe we'll delve into that one later.
The latest scans have shown that my tumor is growing. Obviously, the chemotherapy is not working. While this is not great news, it opens the door for me to participate in a clinical trial for an experimental immunotherapy drug. This is how it works.
Were this trial not available, the next course of action would have been to switch the chemo to a cocktail that has about a 20% chance of being effective. In this case effectiveness means that it generally works for 2-3 months. Beyond that, we would consider other options such as radiation. In any case, each time we are forced to choose a new option, it has a smaller chance of being effective and/or has worse side effects.
The trial also has about a 20% success rate. In this case, however, success means that the tumor goes away. Genetic testing of my tumor shows that I have two mutations. It is my understanding that one of them has shown some level of responsiveness to treatment. The other one is a bitch- apparently, it is unresponsive to treatment and results in tumors that are, in my doctor’s words, “aggressive and painful”.
As the line from Argo goes, “There are only bad options. It’s about finding the best one.” On one hand, it is depressing to think that Shaq is more than twice as likely to make a free throw than my treatment is to work.
On the other hand, my chances are on the Mendoza line (which is the minimum acceptable threshold for major league hitters). As we noted in a past post, however, I'm not getting too hung up on the numbers. Besides, If Ben flipping Affleck can smuggle six Americans disguised as a film crew past the Iranian Revolutionary Guard, I should be able to beat a case of cancer. On the even brighter side, I don’t have to deal with chemo for the time being...so I've got that going for me...which is nice.
A Picture is Worth 1000 Words
Wow, Istanbul feels like a lifetime ago- I can hardly remember the details to write about it. I promised part two, however, so here goes.
After Ayasofya, I walked across Sultanhamet Park to visit the Sultan Ahmed Mosque (better know as the Blue Mosque). It was stunning:
I then made my way to Fatih to visit the largest and grandest mosque in the city- Süleymaniye:
A few blocks away is my personal favorite, the Şehzade Mosque:
The next day I did a food tour then visited Grand Bazaar (which you may recognize from my favorite new Bond movie “Skyfall”):
Afterwards, I checked out the Basilica Cistern (which you may recognize from my favorite old Bond movie “From Russia With Love”):
I capped off my Friday afternoon with a cruise on a commuter ferry across the Bosphorus. When I set foot on the other shore I was in Asia, and had officially satisfied the requirements of the Three Week,
That night I captured the best image of the trip – The Blue Mosque under the Blue Moon:
On Saturday I decided that I was done with the touristy Sultanhamet and headed for the more hipsterish Beyoglu and trendy Besiktas. Two of the city’s most iconic public spaces are here: Taksim Sqaure and the İstiklâl Caddesi. Despite the government calls to steer clear of the crowds, I could not resist the siren song of vibrant urban space.
That night I decided to splurge (because, you know, I’m worth it), and booked the penthouse suite of some Euro-chic hotel. The view did not suck:
I woke up on Sunday and took the subway to Ataturk (sorry D*). Upon my arrival at the airport I found, to my amazement and delight, that I scored an upgrade to Delta One for the 10-hour flight from Istanbul to New York. Not a bad way to end the trip.
*Of course, D was concerned about my well being given the travel advisories and the fact that they had a couple of bomb scares while I was there. She asked "Is that how you want to go? Getting blown up in a subway in Turkey?" Before I could develop a measured response, I blurted out "Better here than drugged up in a hospital bed in Houston."Apparently my subconscious has given this some thought. Maybe we'll delve into that one later.
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