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.

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.

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 Trip (Part 1)

At the time of my last post, I was in Houston having just secured a spot in a clinical trial. I was two weeks in to my Three Week, Three Four Trip, Three Continent adventure. This begins an account of the past week. There is much ground to cover, so it will be presented in installments. 

The first step in determining whether or not we will proceed with the clinical trial was a scan to see if my condition is actually worsening. If is not, then we stick with chemo and forgo the trial. If so, then we’re in the trial. The folks in Houston did a fantastic job scheduling a scan on very short notice. The timing of the scan, however, was not ideal. It was scheduled just before my flight home on Tuesday. If I missed that flight, that would set off a chain reaction of missed flights and layovers that would put The Trip in peril.

Waiting for medical procedures is never easy. I did my best to take my own advice and let go of the things I can’t control (which we all know is easier said than done). I made sure to mention my predicament to every person who worked there, and  “You’re going to miss your flight” was the inevitable response. After a couple of hours of waiting, the scan took about fifteen minutes. As the nurse removed my IV, I bounced from the table, ran to the dressing room, summoned an Uber, bolted outside while still pulling clothes on, and dove into the waiting car. I urged the driver to move as quickly as he felt comfortable doing, and we scrambled to Houston Hobby. I jumped from the car as it was rolling to a stop, bolted through the terminal, thanked the Lord for TSA Pre-Check, pulled an O.J. Simpson (the running kind, not the stabby kind) through the concourse, and arrived at the gate just before the door closed. The Trip was still alive.

The flights home were uneventful, and I arrived in time to kiss D and the boys good night. As soon as my head hit the pillow, it was time to get up. Back to CHA, back to ATL (for the third time in three days), and on to JFK. Next stop:

Istanbul! 

Istanbul has been high on my list of places to visit for some time. In addition to being one of civilization’s great cities, it has a couple of buildings that are on my architectural bucket list. For the past few years I’ve been trying to figure out a way to get there, and I was very happy to finally have my chance.

In the days leading up to The Trip, an ISIS suicide bomber killed thirty-two people in southern Turkey. In retaliation, the Turks bombed ISIS (and used the excuse to bomb the Kurds as well), and arrested hundreds of suspected terrorists in Istanbul (a few dozen ISIS and a few hundred Kurds). The fallout from that was an expectation of violent backlash. There were credible threats against the transit system and public gathering places. These threats were credible enough for the British to advise against all non-essential travel and the Germans and to issue advisories against traveling via transit. In fact, residents of the city were even opting to steer clear. I took the situation seriously, but in the end did not let it deter me.

While the flight to Turkey was lengthy, it wasn’t all that bad (but I probably shouldn’t have watched Argo before I went to sleep.) After landing I found my driver and headed in to town. (D implored me not to take the subway.) I stayed in a small boutique in Sultanhamet- nice enough, but nothing swanky. It did, however, have outstanding views of a couple of my targets- Ayasofya and the Sultan Ahmed Mosque (aka the Blue Mosque).

My master, mentor, and friend made this sketch of Ayasofya
52 years ago. I saved it from the bin during one of his infamous
studio purges. It occupies a position of honor in our home.

Ayasofya, a major trophy building on my architectural bucket list, was a mere five-minute walk away. The building, which has been at various points a church, a mosque and a museum, is big, and old, and beautiful. It is an agglomeration of shapes with seemingly no right angles. This contributes to the impression that the building is even older that it’s 1,478 years. That the building has survived this long in an earthquake-prone place is impressive indeed. The disappointment of The Trip is that the building is undergoing restoration, and there is a massive scaffold under a portion of the dome. While I was disappointed not to experience the full glory of the interior, the scaffolding was useful as a scale. The scaffold was aboiut fifteen stories tall, but still did not reach the top of the dome. The Volunteer Building would fit inside Ayasofya.

Everything inside the building is well worn. The floors are rolling mounds of marble that have been worn away by 1,478 years worth of footsteps. The walls and columns have hunched and settled into an aged stability- the strain of fighting earthquakes and gravity apparent in their posture. The plaster and mosaics display their age- whether they are very old or just simply old. Sadly, the building feels exactly like what it is: a museum. “Come and see what Ayasofya used to be”. While this is truly one of the great architectural achievements of man, and still one of my favorite buildings, I felt a bit melancholy after the experience (but that may have just been jet lag). In fairness, no other building in the world could support the weight of my expectations for Ayasofya. With another great building checked off my list, I was ready to experience the rest of the city.

To be continued…

There were four correct guesses in our little game. Those lucky winners have prizes headed their way. And because I'm a big softie, I got a little something for everyone who ventured a guess. Thanks for playing!

Merry Christianmas! (2015 Edition)

Today marks the end of my forty-second year on God’s green earth. That’s a long time. That’s not very long at all. 

Another week, and another excellent trip to Iowa is in the books. (That's the second leg of my Three Week, Three Trip, Three Continent adventure). The cloud to that silver living of a trip was a conference call I had with my oncologist on Wednesday. When he and I last spoke, we were talking about how well I seemed to be responding to chemotherapy. Our plan was to stay the course and return to Houston in September for another scan. Since that time, the June scan was scrutinized and my case taken back before the tumor board.  After further review, it appears there is a new lesion on my liver. That coupled with an increased tumor marker number from a couple of weeks ago has them quite concerned. The new plan was for me to head to Houston in a couple of weeks for another scan.

How quickly did those plans change. Over the next couple of days, operating under the assumption that the chemo is not actually working, the doctors have been trying to pair me with a clinical trial. It turns out that there is one that seems to be perfectly aligned with my condition. The problem is that it is a globally competitive trial that has only twelve spots, ten of which are filled. To sign on, I have to go to Houston today to do the paperwork. The rub is that by the time I get there, those final two spots may be filled. Rub or not, if there is a chance I have to take it. (By the time you read this, it will be decided one way or another- I’ll do my best to update below if I can).

Ain't that some ----. C'mon Delta- it's my birthday!
(Also, not an encouraging sign as I'm racing across the country
to get one of the final slots of a competitive clinical trial.)

 
The best laid plans of mice and men often go awry. Moving past the obvious disappointment that my condition may have taken a turn for the worse, this is a bummer on a couple of levels. First, today is Christianmas, and I would much rather spend my birthday with my family than on an airplane or in a Cancer Center. Secondly, I had plans and appointments for today and tomorrow.

Over the past four months I’ve been doing a pretty good job in pressing forward with life as usual (if I may so myself). I schedule my treatments and trips like any other piece of business. I’m at crucial points in that work, both in the implementation of a riverfront master plan in Iowa and in the reestablishment of a Design Studio in Chattanooga. Between the tumor and the chemo I’m not 100%, but I’ve been able to hold it together well enough during business hours to work effectively. When the last minute call was made to travel today, I was almost more ticked about having to cancel my meetings, than I was about the condition being worse. Apparently, I am so convinced that I will win, the ole priorities have shifted around.

This is a reminder that I am not in control. Of course, in the greater cosmic sense, none of us are in control of anything anyway. That I’m not in total control is frustrating. The acceptance of that fact is liberating.  Focusing on the things I can control is a much more manageable and productive exercise. For now I can control how I comport myself. I can, to some extent, control how I spend my time. In the end, I suppose this is all we can ever ask of life anyway.

For now, I plan to treat myself to an obscenely priced Christianmas dinner. With any luck I will return to Chattanooga tomorrow with a spot in this clinical trial. Delta-willing, I will depart on Wednesday for the final leg of the Three Week, Three Four Trip, Three Continent tour. God-willing I will be back in time to tell ya'll about it on next Monday.

UPDATE: Yes, I did make it into the trial.

Let’s play a game! Please venture a guess at where in the world I am going this week and send it to me before the end of the day on the 28th. If you guess correctly, I will bring a treat back for you. (If you know, keep it to yourself). For those keeping score, I have made two trips in two weeks, but have only been on one continent. (Therein lies a clue)

Clue #2

Veins on a Plane

Writing during my chemo session is a tricky proposition. I’m not my “normal self” during this time, and more tellingly it means I’ve procrastinated saved my weekly writing for the last minute. I’m also more likely to vent than if I were to write at a time of lesser duress. Case in point: I would typically not channel my inner (Chattanooga native) Samuel L. Jackson if I were writing from the comfort of my bed. As I sit in this chair, however, I feel compelled to declare that I have had it with these (expletive deleted)  needles in my (expletive deleted) arms.* Whew, much better. Lest you worry, please know that once I esacpe the needles, I return to my normal jovial self- still living the dream.

Three weeks, three trips, three continents. The first one is now in the books, and I’m off to quite a start. Two more weeks like this one and it won’t be a tumor that gets me. With D out of town for a few days, I thought this would be the perfect time for a boys getaway. My heirs and I took off for a long weekend, and this is our tale.

I once observed the fact that the barista at the airport remembered how I took my coffee was proof that I traveled too much. The second clue came as we were boarding the plane last week and the CHA Delta gate agents had a birthday card waiting for me. (Perhaps Delta does this for all medallions, but I prefer to believe that it is unique to our Chattanooga people). That it was not my birthday is somewhat beside the point, they were close. After a couple of uneventful flights we landed at DCA, and hit the ground running. A quick ride on the Metro and we were in front of the White House.

That's about right.

My traveling companions know I have patented the Walking Death March™ system for seeing new cities. My boys would not be spared. That first afternoon was tough: White House > W > Washington Monument > Lincoln Memorial > King Memorial > Jefferson Memorial > Korean War Memorial > Vietnam Memorial > WW II Memorial. At that point, the six year old was a bit grouchy, the ten year old was unfazed, and I was wiped out.

The march to the hotel was a serious test of stamina. Just as we were nearing the Washington Monument, three massive helicopters approached from the south. We could see that the streets in the path of the ‘copters were closed. They flew over our head, past the monument, and made for the White House. The two outside ‘copters peeled away and what we would later learn was Marine One landed on the south lawn. We gawked for a bit, watched the ‘copter take off and finished the last stretch of our trek back to the hotel.

Marine One is pretty cool.

No sooner had we crashed on the bed and turned on the TV, than the station cut to live statement from the President. Mr. Obama went on to address the attack in Chattanooga. What a surreal moment. There was the President, who we just saw fly by, sitting in the White House which was 621 feet away, talking about a tragedy in the city that has defined my adult life but was 600 miles away. Unreal. I don’t have anything to add about the events in Chattanooga last week (other than the fact that I am taking a break from browsing Facebook for a while).

Speaking of Facebook, as we were relaxing in the hotel, I got a message from a dear friend that was heading to D.C. for the weekend. Joe Edward was one of the first Phi’s I met in New Mexico. He was the leader of our chapter’s re-founding and unquestionably the adult among us. Friendship, Sound Learning, and Moral Rectitude are the Cardinal Principles of our fraternity, and there was no greater embodiment of those values among us than Joe.

I haven’t seen Joe since the early nineties, but we’ve had some close calls recently. We were at the same ‘Bama game last fall- but missed each other due to cell phone problems. We missed each other by a day at Disney World last month. This third time proved to be a charm. These days, Joe works with the Dodgers and was in town for a series with the Nationals. He invited the boys and I to join him and his daughter for the Saturday evening game. We had a big time catching up- it was a wonderful and unexpected treat to see my brother.

The next morning we were up before the sun to take the first flight home. Upon arrival the youngest and I crashed. The oldest proceeded to hit golf balls, play baseball, and shoot some hoops- all during the muggy heat of the day (oh, to have the vim and vigor of a ten-year-old).  One week, one trip, and one continent are in the books. More to come...

*Sincerest apologies to my Mother, and all of my God-fearing friends and prayer warriors. Indelicate, but needed to be said.

For chemo tunes suitable for foul-mouthed venting I turn to NIN. Survivalism, Only.

Running Through Cheese Grits

Sorry to keep you waiting- last week was a bit of a slog. I felt like I was running through cheese grits, but I got a great deal accomplished. I had a heck of a week at work- taking my board through a strategic planning process, preparing a presentation for Iowa, interviewing potential employees, and working on a very cool conceptual plan for a site in the Innovation District. I got my golf in with the guys (wasn’t spectacular but made my quota), and stepped on the tennis court for the first time in a dozen years (wasn’t spectacular, but beat my wife and son- playing as doubles- handily).

Five cycles into chemotherapy, it may be starting to catch up with me. It’s tough to say how much can be attributed to chemo and how much to my advancing age. Would I not be worn down after a tough workweek? Would I not be fatigued after a round of golf in 95-degree weather? Would there not be a bit of grey hair in the shower drain? Maybe it’s the chemo, maybe it isn’t. I don’t suppose it matters either way.

I promised in the beginning to share the good news and the bad. This week my tumor markers were up. Not good news. That number tends to fluctuate, however, so it’s not catastrophic news. The biggest problem it poses is one of morale- it’s much easier to stay up when the news is good. As the kids say- I’m aight tho. I try to equate this with the ebb and flow of a game- winning doesn’t require that you be in the lead the whole game. There is time on the clock yet, and I'm up for it.

Slow day at the office.

The Snake
Had I heard it earlier in life, I might have adopted this quote as a personal motto: “There’s nothing wrong with studying the playbook by the light of the jukebox.” That, of course, from Alabama great Ken Stabler.  He died of cancer last Wednesday. As he was at the Capstone before my birth, I have no memory of the Snake playing for ‘Bama. He was nonetheless a legend among the youth of the state. Kids at school would tell second hand stories of his exploits that they overheard from their parents. The man was is a legend in his own time.

After a bit of reflection, I am reminded once again that life is not fair. I’m no saint, and lord knows I have spent more than my fair share of nights out on the town. But I was no Ken Stabler. God bless him, he lived hard. Despite that, he made it to 69. For those counting, that’s 26 years older than I am now. Ain’t that some shit. (and don’t even get me started on Keith Richards again). Please don't get me wrong though, I'm not hating on The Snake.

More on Waiting
There is no doubt that waiting sucks. I suppose this is why patience is a virtue. The thing about waiting is that the time spent in anticipation is essentially lost. When we spend time focusing on the future, we miss out on now.

Living in the moment is simultaneously the easiest and most difficult thing I’ve ever done. Given my situation, it's difficult not to appreciate every moment. The shock of a serious cancer diagnosis gives one a different perspective on life. After my prognosis I realized that every time I do a particular thing it is potentially the last time I will ever do it. It’s impossible not to appreciate everything a little more.

On the other hand, as I’ve noted before, I have every intention of beating this particular tumor. The current course of treatment, however, has involved a good deal of waiting. The first stint was a three-month wait between the start of chemo and the first scan. That went well, and the reward is more chemo and another three-month wait until we go back to the tumor board.

The result: I’m not waiting...and, I’m waiting. In not waiting, I’m working hard on getting the Design Studio up and running, and on a Riverfront Renaissance in Iowa. I’m doing my damnedest to play golf, I’m booking traveling when I can (stay tuned for an exciting run- three weeks, three trips, three continents), and I’m jealously guarding my time with D and the Boys.  On the other hand, I’m waiting- seven weeks until I go back to Houston.

As for this week in chemo music, I feel like an underdog. I hopped in the time machine for this one. Let's bridge the gap with this. And finish with obligatory Noel.

Let's Wait

I spent a large portion of my last week waiting. After being out of town for a few weeks, I was incredibly excited to rejoin my buddies for the weekly golf game. After waiting in the clubhouse for a couple of hours desperately hoping that the rain and lightning would stop, we went away disappointed. Unfortunately, I must leave you waiting as well. I'm working on a couple of things for your reading pleasure and none of them are fully baked just yet. 

I'm doing well- feeling good, looking great. I'll be back next week. In the meantime, if anyone has a hankering to play golf please get at me.