CR 516: Infusion #44; 5 years since my diagnosis

Five years ago today, I was diagnosed with bladder cancer. My first blog post (which originally was an email to my family) is dated Nov. 22, 2011. Jennifer remembers 11/11/11 as the day I first saw blood in my urine. The events of the past five years have fundamentally changed my life, as I tumbled through the rabbit hole and into an existence dominated by taking exceptional measures to stay alive while simultaneously acknowledging the very high likelihood that I soon would be dead. I ceased my legal practice, rallied around my family, and drew closer to God.

I look back on the most significant decisions relating to my journey with cancer, and most predate my diagnosis and treatment. First and foremost was the decades of development of my spiritual faith that sustained me as I prepared to face death. I did not know fully understand how my religious life choices would pay off down the line, but I am most grateful that I filled that well before the drought.

Almost equal in importance was my marriage to Jennifer 28 years before my diagnosis. Her patience and care giving was and is a safe harbor from the storm of cancer. Having a partner that is willing to stand by me and walk beside me throughout this journey has been so important. I don't say "thank you" to her frequently enough, but each day I am filled with gratitude.

From an economic standpoint, my decision in 2002 to listen to my insurance agent and purchase own occupation disability insurance has removed the necessity to try to continue to work while slogging through this never-ending battle. Those ongoing payments pursuant to the policies have made it possible for me to retire early and focus on my ongoing treatments and spending time with my family.

I am comfortable with all of my major treatment decisions, even though some did not work and others had undesirable complications and side effects. All of those decisions were made after careful consideration with multiple doctors, my own research, discussions with Jennifer, and study and prayer. The neoadjuvant chemo did not work. My radical cystectomy and neobladder had several complications and permanent effects on my physiology. The confirmation of metastatic disease and the 15 months of watchful waiting gave me time to reorient myself to my likely demise, as more than 90% of people with that diagnosis died within 5 years. The second round of chemo -- ddMVAC -- may had slowed my disease for a few months, but also gave me peripheral neuropathy which continues today. Most importantly, my entry into this clinical trial in February 2015 that has succeeded in eradicating all visible evidence of my cancer was facilitated by Dr. Andrea Apolo at NIH. This immunotherapy treatment for metastatic bladder cancer did not exist when I was first diagnosed. I am so grateful for the efforts of all of the medical professionals that have led to the availability of my immunotherapy treatment.

As I recently noted, Hopkins recently had a radiologist who was not previously involved in my case do a review of all of my CT scans since I started the trial. She measured all of my tumors over the course of 7 scans over the past 20 months. She concluded that my most recent scan showed no visible tumors -- not even enlarged lymph nodes. It's not a cure, everyone is quick to point out. It's just that there is no evidence of disease.

In light of that finding, today I asked Dr. Hahn whether there was any scientific reason to continue getting nivolumab. He shook his head and said "not really." Without anything detectable to target, and no evidence that continuing with the immunotherapy will have any beneficial effect, he said that the decision of whether to continue was more psychological than medical. I asked whether the trial sponsor (Bristol Myers Squibb) needed me and others to continue getting the drug and accumulate more data. Dr. Hahn said he didn't think so -- BMS has submitted its application to FDA to have Opdivo approved for use on metastatic bladder cancer, so it has already collected the data it thought it needed. Of course, BMS wants to continue to follow me and other participants in the trial to see how durable the results are, but there would be nothing gained scientifically by my continuing until February 2017.

There also is no evidence that continuing immunotherapy acts as a prophylaxis against the recurrence of disease. It might be logical to believe that continuing to take a drug that teaches the immune system to kill cancer cells might be a good idea even if someone has no detectable cancer, but that's not how doctors usually like to think. More importantly, there is simply no data that doing that helps guard against recurrence.

Dr. Hahn noted that he could see a more visible rash on my face, and said that I should let him know if it got worse. He added that my increasing dermal toxicity might be a reason to suspend treatment. He added that under the trial terms, I would have the right to resume treatment if there was a recurrence of metastatic activity. He stressed that it was solely my decision, and did not pressure me one way or the other.

I went forward with my scheduled infusion -- #44 -- and am going to think hard about whether to continue getting infusions. Right now, I'm leaning towards not going for the full two years. Whether that means getting one or two more, or what, I have not yet decided. I think I'll get at least one more on Dec. 6, but I might make that my last one. But that decision is not final. I'm going to search, ponder, and pray. And give thanks.

CR 504: Infusion 43, and a potential advocate for BC

Yesterday I received a call from Liz, a Hopkins employee who is working to increase the visibility of The Greenberg Bladder Cancer Institute, and asked if we could chat while I was there for infusion #43. Sure, I said. She brought with her colleague Michael. They were interested in having me participate in a Facebook Live session with David McConkie, the Director of Hopkins Greenberg Bladder Cancer Institute. We set up a meeting after Thanksgiving with Dr. McConkie to kick around the idea a bit more. They also asked that I author a guest blog for their Cancer Matters blog. I said that I was happy to add my voice to sing the praises of the place that saved my life.

We talked about why more patients are not enrolling into clinical trials and getting immunotherapy. There is no simple answer. Most patients, when they are diagnosed with cancer, want their doctor to tell them how to treat them, but don’t get into the details. Cancer triggers such a primal fear in most patients. They think of it as an acute disease that demands immediate action, not a chronic condition to me managed. Usually, the first doctor they see makes the treatment decisions. Few seek second opinions or go to an NCI center such as Hopkins. It’s not that much different from when your car has a major engine problem and has to be towed to a mechanic. Most people will have that first mechanic work on the car, regardless of the mechanic’s level of expertise, or cost, or the availability of other mechanics. But that mechanic may not be the right person, and the recommended repairs may not be the right repairs. When your car (or body) breaks, you want it fixed. You don’t want to go get multiple estimates from different mechanics (or doctors).

Today Dr. Hahn told me how a new study had just been released that compared pembrolizumab to adjuvant chemotherapy. The data showed a significantly better prognosis for patients getting immunotherapy. This means that more and more patients will be able to get immunotherapy for metastatic BC first, instead of having to try and fail chemo. I told Dr. Hahn that was great news, but even better would be studies showing that immunotherapy worked on muscle invasive bladder cancer (MIBC) before RC. Patients could get rid of their cancer without having to lose their bladder and go through all of the side effects. Dr. Hahn said that would be great, but there would have to be lots of more studies (and a number of years) before we were at that point.

I related this to Liz and Michael, and said that until immunotherapy becomes the proven first line treatment for MIBC, urologists will continue to be the first point of contact for almost all BC patients. (Ironically, the standard treatment for non-MIBC is a type of immunotherapy called a BCG wash, which is typically locally administered by urologists.) For now, too many urologists who are not attached to NCI centers have little motivation to send their patients with MIBC somewhere else. They usually wait until the cancer goes metastatic, an even then the patient typically will be referred to a local oncologist. And most clinical oncologists are not participating in immunotherapy clinical trials. The challenge is getting the word out about immunotherapy to both patients and doctors. I’ll do what I can to evangelize. Knock knock. "What do you know about bladder cancer? Would you like to know more?" Humm, maybe there is a better way . . . .

Meanwhile, infusion #43 was routine, other that, when doing my vitals, the scale that I stood on said that I had lost 40 pounds in the past two weeks. I snorted and said that couldn't be correct. I knew that I had eaten way too well in Scotland and Ireland for that to be the case. We found another scale that confirmed I was still fat, dumb, and happy (well, two out of three, I thought angrily). Dr. Hahn said that my labs were 100% normal – none of the 40+ things they tested were outside the typical range. And last week the Hopkins radiologists reviewed all of my scans while on the trial, and wrote that my last scan showed no evidence of any of my target tumors. I mentioned this to my nurse and he was accessing my port, and he smiled broadly and said that was something that they didn’t hear too often.

Tomorrow Jennifer and I are flying to Utah for my nephew’s wedding. We’ll get together with my side of the family, and Jennifer’s family is also having a gathering. And we’ll of course get to stay with and play with the grandchildren. I am fortunate indeed.

Scotland and Ireland recap

My next infusion is on Thursday, November 10, because Jennifer and I just returned from a twelve day vacation in Scotland and Ireland to celebrate our 33rd anniversary. The following recap has nothing to do with bladder cancer and everything to do with the joys of life.

Our trip to Scotland was inspired by the UK’s Brexit decision in late June. In reaction, the value of the Pound plunged, and the UK went on sale. In July, Aer Lingus, Ireland’s national airline, started offering cheap fares to fly from the US to destinations in the UK. I’d always wanted to visit Scotland and Dublin. Once I knew my immunotherapy infusion schedule for October and November, I used celebrating Jennifer and my 33^rd anniversary as a reason to book a vacation. I planned on us having a week in Scotland, flying into Edinburgh, then taking a short hop to Dublin and spending 4 days on the Emerald Isle. Only then did I start planning an itinerary. For me, reading about places I’m going to see and making the plans to actually visit is a large part of the fun of travel. I like to read about the places that I’m visiting and know a bit of the backstory. I stumbled onto a wonderful site called Undiscovered Scotland, and spent hours clicking through pages and pages of Scottish history. 

Scotland and England have had a love-hate relationship for a long time. The Romans ventured into Scotland and found the Picts and Celts to be untamable, so they built Hadrian’s Wall, effectively putting Scotland outside of the Roman Empire and what became traditional Europe. Christian missionaries arrived in Scotland between the Fifth and Eighth Centuries and found success. After killing MacBeth in 1058, Malcolm Canmore became king of Scotland and founded a royal dynasty.

We boarded our Aer Lingus flight On Wednesday Oct 26^th at about 5 pm. The airline had notified me a couple of days earlier that it had accepted my lowball offer to be upgraded to business class, so Jennifer and I had lay-flat seats for our redeye flight to Dublin. We each popped an Ambien and actually got some sleep as we flew across the pond. We took a puddle jumper from Dublin to Edinburgh, landing before 8 am. We collected our rental car – a Vauxhall diesel sedan – after Jennifer persuaded me not to wrestle with a right-hand drive Mini with manual transmission, shift with the left hand fun. I had rented a Garmin GPS for our trip, but found that our rental had its own nav system that was much faster and user-friendly. It was raining when we left Edinburgh airport, but the clouds lifted as we drove into Stirling.

Stirling is the traditional seat of the Scottish kings. The city stands in a strategically important position, at the lowest ancient crossing point of the River Forth. There is evidence of a fortress in the area as far back as prehistoric times, guarding the passage between the lowlands and highlands. Whoever controlled the fortress effectively controlled Scotland.  Wrote St. Rick Steves, the patron saint of European guidebooks, “Stirling is the patriotic heart of Scotland [and] is like Bunker Hill, Gettysburg, and the Alamo, all rolled into one.” Stirling is the home of Stirling Castle (natch), plus is the site of three major battles in the first Scottish war of independence from England: Stirling Bridge (1297) when William Wallace routed the English; Falkirk (1298), when the English returned the favor, and Bannockburn (1314), where Robert the Bruce won Scotland’s independence.

We rolled into Stirling Castle a little before 10 am, and spent the next several hours exploring the historic site. 

Feeling a little jet lagged, we debated going to the hotel for a nap, but instead drove to the site of Bannockburn, where Robert the Bruce kicked the English out of Scotland and won the country’s independence. A strange 3D historical center and enthusiastic guides tried to excite the audience into participating into an electronic reenactment of the battle, which is rigged so the Scots always win.

Near the end of the day, we drove to the William Wallace monument, a gothic pillar on top of a crag overlooking the valley. We learned that it involved a steep hike up to the pillar, then 300+ steps up to the top, and we had only 30 minutes of daylight left. Not feeling sprightly, we decided a picture would suffice, then found our hotel. Despite my attempts to nap, Jennifer routed me out to a well-reviewed restaurant for dinner. We must have picked a bad night or were too tired to enjoy it, because the food was not nearly as good as my pillow.

We awoke Friday Oct 28^th feeling much better. We stopped at a local bakery for bridies – a type of meat pie similar to pasties, only with a flakier crust, and enjoyed our hot breakfast, topped by a chocolate doughring (Scottish for donut). Fortified, we drove to the village of Cambuskenneth, which is just across the river Forth from Stirling. There stands the remains of CambuskennethAbbey. 

Scotland has an amazing number of abandoned and ruined abbeys, churches, and cathedrals. Many were founded at the behest of King David I (grandson of Malcolm Canmore) between 1120 and 1150. He invited different orders of Catholic monks to found abbeys, and provided the land and funding. The monks built massive abbeys and churches. Many of those were the subject of attacks during the hundreds of years of wars between Scotland and England, but what finally did them in was the Reformation, when in 1560 or so virtually all Catholic churches in Scotland were sacked and stripped of their idols and gold. Some were repurposed as Protestant churches, and others were abandoned and became quarries for other local building projects.

Cambuskenneth Abbey was founded in 1140, and a huge church and monastic complex was built. The founders of Cambuskenneth Abbey were of the Arrouaisian Order, which eventually was subsumed by the Augustinians. The literate monks supported the king and court at Stirling Castle. Today, all that stands of Cambuskenneth Abbey is the bell tower and foundations of the rest of the abbey complex. Jennifer and I both are drawn to these quiet old ruins, away from tourists and commercialism. It’s humbling to contemplate the centuries that have passed since their building, and the religious devotion of their inhabitants.

Our next stop was Dunblane Cathedral, about 8 miles north of Stirling. 

Christianity in Dunblane stretches back to St. Blane's establishment of a monastery on the site of an old Roman fort (or "dun") here in about AD600 (hence the name Dunblane). The first stone church and four story tower were built in around 1150. The tower still stands; adjacent to it is a cathedral that was built and rebuilt over the next 400 years. In 1560 it was sacked. The choir end was converted to the local parish church, but the nave sat roofless and abandoned for more than 300 years. Starting in 1889, the rest of the church was restored and the whole building serves as one of the most spectacular parish churches in Scotland.

Six miles further up the road is Doune Castle.  

Doune was the location for multiple scenes from Monty Python and the Holy Grail, including the French-occupied castle stormed by King Arthur (“run away!”) and Swamp Castle. More recently, it was Castle Leoch in the TV adaptation of the "Outlander" novels. The audio narration by Terry Jones has been called the “Best Scottish Castle Audio Guide Ever” on TripAdvisor. Jones recounts funny stories of filming the Monty Python movie and includes puckish observations about the history and occupants of the castle. The place is fairly intact for an 800 year-old site, and with the help of the audio tour was the funniest place we visited.

We wound our way into the highlands, taking the back roads that were barely wide enough for a car and a biker. Scottish road builders don’t believe in shoulders, either having a grassy verge or a stone kerb. Most roads once were cart paths. We had fun twisting and turning through small villages. The leaves are in full autumnal color, with the oaks, maples, and larches in full array.

In the village of Muthill, we stumbled upon an old church and stopped to investigate. We found an abandoned structure featuring a tower built in 1170 and still intact. The rest of the church is much newer, having been constructed in 1425. After 400 years of use as a parish church, the congregation split and built two separate churches, and the old church was left to crumble, since building a new structure would have meant digging up the graves of the prominent Muthillians buried in and around the church. 

Continuing down the road, we saw a sign for Drummond Castle and Gardens, and impulsively decided to check it out. We drove down a miles-long path barely wide enough for our car, lined by tall maples and surrounded by beautiful grounds. 

We had unwittingly stumbled on some of the most spectacular gardens in Scotland. We did a quick looky-loo, but unfortunately didn’t have the time to fully explore the place. The video of flying through the gardens on the website is pretty amazing, though.

Our intermediate destination was Pitlochry, a scenic village at the base of the Highlands. It holds a festival theatre for several months of the year, and I had purchased tickets to tonight’s performance unencumbered by any knowledge of what it was about. We arrived in time to amble around the town and have some dinner at one of the local pubs. The play was called Para Handy, based upon stories by Neil Munro, and which in turn inspired a 1960’s TV show called the Vital Spark. The show appears to be Scotland’s version of Gilligan’s Island, and centered on a misanthropic crew of a small puffer (a type of steam ship) named the Vital Spark on the west coast of Scotland in the 1930’s. The play moved the setting to before the Great War, and contained lots of songs and inside jokes that went over our American heads. It was good silly fun.

One of our strategies was to sightsee while it was light, and drive while it was dark. Scotland sits as far north as Juneau Alaska, and as I planned our trip I realized that sunset would be at around 5:30 pm or so. After Para Handy ended, we drove up to Inverness, which took us through the Cairngorm Mountains and into the centre of the Highlands. We arrived at close to midnight and fell into bed. This vacationing stuff is hard work.

Saturday Oct 29^th dawned bright and clear, but we didn’t stir until almost 10 am. Eventually we made our way to the local bakery and bought a couple of meat pies and other baked goods to keep us going through the day, having only one large meal for dinner. Our first destination was Loch Ness, where we stopped and threw a rock into the lake to see if a rumour emerged to attack us. Since Jennifer had a camera, nothing happened. 

We continued down the road to Urquhart Castle, which juts out into the loch and is one of the must sees of the Highlands. The Picts used the location in at least the 5^th Century, and the current castle was built in the late 1300’s. For the next 300 years it was the scene of many attacks and defenses by both sides. After the English successfully repulsed an attack by Jacobites in 1689, they decided that the place wasn’t worth defending, but blew it up as they left so the Scots couldn’t use it as a fort against them later on. The ruins still capture the imagination and provide some spectacular views of the loch.

Backtracking to Inverness, we then went to Culloden Moor, site of the last pitched battle in the UK. As some history students or any Outlander fan will know, Charles II of England and his brother James II were the last Catholic kings to rule England. After Charles II died in 1685, James II was crowned king. He was forced from the throne in the Glorious Revolution of 1688, and replaced with his Protestant daughter, Mary Stuart, and her husband, William of Orange. The followers of James were called Jacobites, based upon the Latin form of James. After failed uprisings in 1715 and 1719 by James II’s son, in 1745, Bonnie Prince Charlie, 24 year-old grandson of the deposed king, led another uprising. The Scottish followers of the Prince routed the English from Scotland, and marched upon London. When they were 120 miles from London, they decided to turn around and head back to Scotland instead of attacking London. They were unaware that the English court was in a panic and was about to flee back to Germany. One of history’s greatest what if’s asks how the world would be different had the Bonnie Prince continued to London. With a Catholic king on the English throne, France and England likely would not have been at war for the next 70 years. The French and Indian War in the US would not have happened, and the American colonies would not have been subjected to heavy taxes. There would have been no American Revolution. The French would not have supported the US against the English, gotten into debt, and raised taxes on its citizens, which triggered the French Revolution. All because of a decision in a tavern in Derby in December 1745.

Culloden Moor is where the exhausted Scottish army was blown apart by the English on April 16, 1746. More than 1500 Scots were killed compared to 50 English. 

In the aftermath, the Highlands were savagely cleared, the clan system destroyed, and Scotland was subdued by force for the last time. As we walked the battlefield and marked the battle lines, I was impressed by the individual bravery of the Scots despite the petulant and incompetent insistence of a drunk 24 year-old pretender that they fight then and there. Commanders have a heavy obligation to do right by their forces, and on that day and for decades thereafter the Scots paid a dear price for poor command decisions.

As daylight was waning, we went a couple of miles down the road to Clava Cairns. We found three 4000 year-old cairns, each surrounded by standing stones. The two outside cairns are passage graves, where the inner chamber is linked to the outside world by a passage. When originally constructed the cairns were 10 feet tall, but the entry through the passage would be on hands and knees. On winter solstice, the center of the passage is illuminated by the setting sun. The stones appear to have been carefully selected and arranged, and some have circular carvings or “cups”, but we can only speculate on how they were used. The central cairn was like a large fire pit, and excavations have revealed human remains. The guess is that people were cremated in the central cairn, and their ashes placed in one of the passage cairns. This was one of Jennifer’s favorite sites on our trip.   

 It’s strange to think that the Clava Cairns are so close to Culloden, yet the passage of time between when those cairns were built is more than 15 times longer than the 275 years since the last Jacobite uprising.

As night fell, we programmed the GPS for Aberdeen, 90 miles to the east. Our stomachs were rumbling, and Jennifer played with the GPS until she found a pizza place that served remarkably good food. We pulled into the Aberdeen Courtyard Marriott at 10 pm and slept soundly.

Sunday Oct 30 was our castle day. The Aberdeenshire area of Scotland is littered with more than 80 castles, including Balmoral, Queen Elizabeth’s favorite. We had narrowed our list to a half-dozen or so, knowing that we would only be able to see a few. We rolled out of bed at the crack of 9, and were surprised to learn that daylight savings time had ended overnight. We would have one hour less of daylight for our sightseeing. We ate breakfast at the hotel, which ended up taking more than an hour since there was only one apprentice cook in the kitchen, the main cook having called in sick. The hostess repeatedly apologized, adding that she was even trying to help out “although I am not a good cook.” She ended up not charging us because it took so long, so at least she gets high marks for trying.

On our way to our first destination, we drove by a sign for Drum Castle, one of our options that didn’t make the final cut, and decided to swing by anyway. Drum Castle is located in the ancient Forest of Drum still stand, dating from the days when Scotland was covered by great stands of oak and pine. We checked out the exterior but weren’t able to spare the time to go through the interior. So many castles, so little time.

Crathes Castle was our next destination. Undiscovered Scotland calls it “simply one of the most superb castles in Scotland. The beautiful, pink-harled exterior and Disney-esque design . . . are combined with a remarkably well preserved original interior, wonderful gardens and a range of other attractions.” 

It is one of the few Scottish castles to have never been sacked or looted, due to the nimble manuverings of its owners to either choose the winning side or to know the right people on both sides and get letters guaranteeing the safety of the castle. As a result, the interior has many of the furnishings and decorations from Robert the Bruce forward to the present. As an added bonus, the 500 acre grounds have been meticulously maintained, including a beautiful garden adjacent to the castle. We lingered longer than we had planned, enjoying the sights.

A few miles down the road is the little town of Banchory, with a scenic gorge and a 17^th Century bridge over a waterfall. The place is called Brig o’Feuch (pronounced fyooch, the ch as in loch). The area around this bridge is pleasant, and the fall colors and cascading waters make for an attractive scene. 

We enjoyed the warm sun and marveled that the weather had been so cooperative. We had come equipped with waterproof outerwear and shoes, but had not needed them so far.

Our next destination was Dunnottar Castle. 

As Undiscovered Scotland put it,

“No other Scottish castle comes close in terms of a sense of sheer brooding impregnability. This is a castle which looks across to the nearby coastal cliffs and whose presence, even today, conveys a very simply message: "Don't mess with me." The outcrop of rock on which Dunnottar Castle stands might have been designed specifically to permit the building of the most impregnable fortress in Scotland. Sheer cliffs 160ft high almost completely surround a flat area over three acres in size. The rock was once joined by a narrow fin to the mainland, but even this was carved away to ensure access along it was not possible.”

Dunnotar Castle played a key role in Scottish history between the Thirteenth and Seventeenth Centuries. In a scene that didn’t make it into the movie, in 1297 William Wallace captured the fort, shoved all the surviving English soldiers into the church, and burned it down. In 1652, it was the only fortified location in Scotland still supporting Charles II against Oliver Cromwell’s

Parliamentary forces. Cromwell’s Roundheads wanted to take the castle because it was being used for the safe keeping of the Honours of Scotland, the Crown Jewels, and of Charles II’s personal papers. Scottish forces managed to smuggle the papers and Honours out before the castle surrendered after an eight-month siege, and were kept safe until he was restored to the throne in 1660.

In 1685, 122 men and 45 women were locked in a single vault as punishment for opposing King Charles’ attempt to impose his version of Catholicism across the land. These Covenanters, as they called themselves, suffered for two months with some dying of starvation and disease and others were killed after trying to escape. After two months in the castle, the survivors eventually were transported to the colonies as slaves, where most died of fever. As Jennifer and I stood in that dank, dark vault with a sloping floor towards a single window and drain, I tried to imagine the horrid conditions those people faced for their religious beliefs, and wondered if I would have the fortitude to do likewise.

Dusk was falling with an audible thud as we hiked back to the car park. At a food vendor there, Jennifer bought a cup of stovies – a delicious stew-like mush of potatoes, onions, meat, and gravy, served with an oatcake. Just the thing to warm you up after a day in the Scottish autumn. 

We tuned our GPS to Edinburgh and drove for a couple of hours, plotting where we would eat dinner. Jennifer looked through our guide books and settled on the Sheep’s Heid Inn, a pub that has been operating since 1360. Unfortunately, the food we ate tasted like it had been there since the pub was opened. Maybe ale makes it more palatable, but we didn’t try to find out. We then pulled into the Sheraton Grant Hotel and Spa, where we were cashing in our points for a 4-night stay. I tell you, this vacation thing is pretty tough.

Monday Oct 31^st, Halloween Day was another clear day, despite the forecast of possible rain. All of the days have had highs in the low 50’s, and lows around 40. We’ve been wearing a light fleece jacket and been plenty warm. Today was our day to explore Edinburgh, one of the most beautiful cities in the world. The center of town has a volcanic plug with sheer cliffs about 200 feet above the surrounding valley. As glaciers scraped away the soil at the end of the last ice age, they flowed around the plug and left a long tail of soil and stone tailing down from the plug to the next hill to the east. On that natural volcanic plug is a defensive point with a fortified presence that has been documented since at least the days of the Romans. King David I (the guy who founded all of the abbeys) built a royal castle there in the 1200’s. By the mid 1600’s it was principally a military fort. Historians have identified 26 different sieges in the past thousand years, giving it a claim to having been “the most besieged place in Great Britain.” (Apparently the historians have never tried watching the changing of the guard at Buckingham Palace.)

Edinburgh also was the central location of the Scottish Reformation and Enlightenment, where John Knox and other opponents of Catholicism’s excesses preached that all should read and know God’s word. Between 1660 and 1690, most Catholic priests and monks were either forced to accept Protestantism, or leave the country. The Reformation resulted in major changes in Scottish society and set an example for the world. Scottish reformers established free public schools in every parish, and instituted major reforms of the university system to encourage scientific inquiry. The Scottish enlightenment soon followed: For the first time in western society, an entire generation was literate, and the thirst for knowledge resulted in an explosion of ideas. Edinburgh became a magnet for the intellectually curious. My learning about the Scottish Reformation and Edinburgh began in my freshman year of college, when I was required to read the works of Adam Smith, David Hume and his rival Thomas Reid, Robert Burns, Adam Furgesen, Joseph Black, John Playfair, James Hutton, and Lord Kelvin, among others.

Edinburgh was a remarkable city in the 1600’s and 1700’s, and unlike any other city in the world. Because of the geography of the city, there was little place to spread out, so the first high rise apartments were built of solid stone, some stretching as high as 10 stories by the early 1700’s. Rich and poor lived side-by-side, shocking the rest of class-conscious Europe. In the late 1700’s, old Edinburgh was bursting at the seams, so the first planned community of Newtown was built to the north of the castle, with the same multi-story tenements spread out over a carefully planned grid. Much of the original city remains, with all of its grit and charm, although much of it is hidden under merchants selling “tartan tack” or, as Jennifer and I call it, Scottish schlockundjunken.

We started our day walking to Edinburgh Castle, absorbing its history and taking in the views. 

 We gazed at the Great Hall with its original post and hammer beam ceiling built in 1511 without any iron, and still tight as a ship. The walls of the great hall have hundreds of armaments spanning more than 500 years, including swords and guns captured by the garrison soldiers in wars since the 1600’s. We looked at the Honours of Scotland, saved from Cromwell’s forces from Dunnottar, as well as the Stone of Scone, repatriated from England 800 years after it was stolen by Richard I in 1298. The stone is smaller than I imagined, and the crack where four lads accidentally broke it while stealing it from Westminster Abbey as a lark in the 1950’s is still visible. The place still houses soldiers for no reason other than tradition and inertia.

We spent the rest of the day slowly ambling down the Royal Mile, the road that connects the castle to the Palace of Holyroodhouse, the still-functioning part-time residence of England’s greatest tourist attraction, the Queen and her relatives. There are hundreds of alleys, courts, closes, and walks to explore off the Royal Mile. We had an amazingly tasty lunch in the basement café of St. Giles Church, where John Knox preached and outside of which witches were burned. We rubbed the toe of the statue of David Hume, and were surprised to see that the statue of Adam Smith that showed him to be wide awake, something that no reader of Wealth of Nations ever has been able to do. We listened to Rick Steve’s podcast on our headphones, shuffled along as he related offbeat anecdotes, and thoroughly enjoyed the day. By sunset we were weary, so we took a taxi back to the hotel and made our way to the spa to soak in the pool and sauna. Later, we walked to a Japanese restaurant for udon and ramen, then sacked out with no tricks or treats.

The first day of November was the day to explore the great border abbeys of Scotland. Between 1120 and 1150, King David I invited different orders of monks to establish abbeys close to the English border and granted them lands and income in support. He did this with multiple motivations: because of his religious piety and devotion; to show the English how sophisticated his country had become; to provide the local nobles with learned monks; and to act as a buffer against possible invasions. The monks accepted and, like the story in Ken Follett’s masterpiece, Pillars of the Earth, spent decades building great stone churches and abbey houses. Starting in the mid 1300’s and continuing for the next 300 years, those abbeys came under repeated attacks by either the English invaders or the Scots using them as defensive positions. Each time they were rebuilt. What finally did in the abbeys, however, was the Reformation. The Catholics lost their support of lands, rents, the nobles, and new monks. And their great churches were stripped of icons, gold, and other symbols of the Roman church that, in the eyes of the reformers, had lost its way of teaching the people how to develop a personal relationship with the Divine. The abandoned abbeys were allowed to decay and the buildings mined for stone.

Our first stop was Kelso Abbey, founded in 1128 by Tironensians (or reformed Benedictines).

This was one of the richest abbeys, as well as the closest to the border, so it was the site of repeated attacks. The abbey church was unique in Scotland in that it had two towers and four transepts. The English repeatedly attacked the abbey in the 1300’s and again in the mid 1500’s, and blew up most of the buildings in 1545. A parish church was built in the ruins in 1549, but the Reformation in 1560 ended any attempts to rebuild the grand church. All that stands now is the west tower and transepts, plus the numerous gravestones in and around the site. 

 Kelso town has grown around the ruins with many stone buildings having material from the abbey. It’s a beautiful and picturesque walk around the village and down to the river.

Our next stop was Jedburgh Abbey, an Augustinian priory founded in 1138. It stands on the north bank of the Jed Water in the center of Jedburgh village. It was built on the site of an 8^th Century church. Like Kelso, it was repeatedly attacked in the mid 1300’s and again during the “rough wooing” in the mid 1500’s. By the time of the Reformation in 1560, there were only eight Augustinian canons left. They were allowed to continue to live at the abbey and their reduced building became Jedburgh's Parish Church until 1875. The core walls and tower still stand despite being exposed to the elements for more than 550 years. 

It’s a beautiful structure with considerable details plainly visible. 

Like Kelso, we had the place to ourselves as we explored the nooks and crannies of this nearly 900 year-old structure.

Dryburgh Abbey is the most off the beaten path, and in many ways the most beautiful setting. It’s in a horseshoe bend of the Jed River, and was surrounded by trees planted by knights returning from the crusades. One Lebanon Cedar still stands more than 800 years in age. 

Sir Walter Scott, the early 19^th Century writer whose works are largely unreadable today, but who singlehandedly returned the Highlanders to fame, is buried there. Dryburgh has visible portions of the abbey buildings and out structures. It is a peaceful place to walk around, and we had the place practically to ourselves. I was surprised to see that General Douglas Haig, the commanding general of the British troops during World War I, also is buried there. In memory of the millions of young men that Haig needlessly sent to their deaths and maiming, I spit on his grave.

The last of the Abbeys on our road was Melrose Abbey. It’s one of the more complete abbeys, built by Cistercians starting in the 1130s. 

It was attacked by the English in 1322 and rebuilt with the support of Robert the Bruce. Apparently he liked the place so well that his heart was buried there. 

The English attacked it again in 1385 and 1544-45, and it was never fully rebuilt before the Reformation in 1560 ended the active practice of Catholicism, although the remaining monks were allowed to quietly live out their lives. A parish church was built in the ruins and used for 300 years. The rest of the Abbey grounds have been excavated in the past 40 years and have given a better insight to the habits of the abbots.

Dusk was falling as we pointed the Vauxhall back to Edinburgh. For dinner, we stopped at Mum’s, a cross between an American diner and a Scottish pub, where we got one of our best meals yet. Jennifer got a steak and ale pie wrapped in a flaky puff pastry. I got bangers and mash, with three different types of sausage from locally raised pigs. Yum!

On Monday, Nov 2^nd, our first destination was Rosslyn Chapel. It’s an intricate little gem of a church that was featured in the climactic scene of Dan Brown’s The DaVinci Code book and movie, which has led to an explosion of interest. 

Built as a private family chapel in the mid 1400’s, the place is positively bursting with sculptures and carvings that give rise to colorful stories and multiple interpretations: An intricate pillar carved by an apprentice while the master was gone that caused the master to fly into a jealous rage and kill the apprentice (and sending the master to the gallows). The master’s grotesque mask now gazes upon his apprentice’s work for all eternity. A carving of the seven virtues and seven deadly sins, with one sin transposed with a virtue. The carvings of corn on the cob (unknown in Europe at the time). More than 100 carvings of “the green man,” from a pagan fertility cult. And so much more.

The chapel was used for only about 100 years until the Reformation, and rather than deface it, the family simply locked it up and left it. In 1650, Cromwell’s troops stabled his horses there (as they liked to do to whatever former Catholic churches they came across), but left it otherwise unharmed. The family started restoring the church in the 1700’s, and by the 1800’s it became the parish church of the village. It is still in use today. Every surface inside and out has been painstakingly worked, and you could spend an entire day just trying to take it all in.

We didn’t have all day, however, because Jennifer wanted to do some shopping. I dropped her off on the Royal Mile, parked the car, and found a Starbucks where I could relax while she melted the credit card. For lunch we went to Oink, where they carve a roasted pig every day and serve the pork on sandwiches. When the meat’s gone, they close up.

Suitably fortified, we stopped by the National Museum of Scotland where almost everything original that relates to Scottish history can be found. Like any museum, it’s easy to get overloaded, so we spent less than two hours there. We’d had our fill of Scotland on this trip and were ready to move on.

On Tuesday, Nov 3^rd, our flight to Dublin departed at 11:45 am, so we did not have to awake at an ungodly hour to travel. When I booked the flights, Aer Lingus allowed me to take an extended stopover in Dublin, so I decided to spend 4 days on the Emerald Isle. My planning for Ireland paled in comparison to Scotland, and so our itinerary ended up being a bit less conventional than most. We collected our rental car in Dublin (this time a manual transmission, since I was now comfortable with driving on the wrong side of the road and wanted to add some adventure into the mix), and headed out to the mountains south of Dublin. Our destination was Glendalough, a glacial valley of two lakes.

It was the site of a unique (for Ireland) monastic city that existed for more than 1000 years. Our attention was drawn by the description from Lonely Planet:

In AD 498 a young monk named Kevin arrived in the valley and decided that it would be a good spot for a bit of silent meditation. He set up house in what had been a Bronze Age tomb on the southern side of the Upper Lake. For the next seven years he slept on stones, wore animal skins, maintained a near-starvation diet and – according to the legend – made friends with the birds and animals. Word eventually spread of Kevin’s natural lifestyle, and he began attracting disciples who were seemingly unaware of the irony that they were flocking to hang out with a hermit who wanted to live as far away from other people as possible. Kevin’s preferred isolation notwithstanding, a settlement quickly grew and by the 9th century Glendalough was Ireland’s premier monastic city: thousands of students studied and lived in a thriving community that was spread over a considerable area. Inevitably, Glendalough’s success made it a key target of Viking raiders, who sacked the monastery at least four times between 775 and 1071. The final blow came in 1398, when English forces from Dublin almost completely destroyed it. Efforts were made to rebuild and some life lingered on here as late as the 17th century, when, under renewed repression, the monastery finally died.

Still standing are a number of structures, including a 9^th Century 100-foot tall round bell tower, the walls of a cathedral that is nearly as old as the bell tower, and a number of other buildings. 

All around the site are graves, including one where a body had just been interred. The site sits in a beautiful valley with plenty of hiking trails and picnic spots. We explored the ruins and hiked around until dusk, then found a food truck. We each ordered a burger and fries, and they must have wanted to get rid of their fries because we each got about 3 pounds of perfectly cooked, steaming hot fries. We decided that they were from magical Irish potatoes because they kept replicating as we ate them. No potato famine for us!

Night fell and we programmed the GPS to Kilkenny. I was surprised to see it would take two hours to drive there, even though it was less than 50 miles. That’s because we drove on slightly improved cow paths up into the clouds with a crescent moon guiding the way. I wish we could have seen the hills as we drove, but that’s what we get for travelling when the sun sets at 4:30 pm.

Kilkenny was the base of our explorations on Wednesday, Nov 4. It’s a well-preserved medieval town that has become the art and craft center of Ireland, so we were hoping to see some artists in their native habitat. We later learned that County Kilkenny also is the home of two relatively well-preserved abbeys, so that was icing on the cake. Awaking very early, our first site was Kells Priory,  which was founded in 1193. After several raids, over three acres of priory buildings and lands were enclosed with tall walls and seven tall towers. 

It was done in by King Henry VIII’s 1540 decree seizing all Catholic properties in his kingdom. For the next 575 years, it has slowly crumbled. You have to walk through a sheep pasture to get there. No visitor’s center, no historical interpretations, no signs, no other tourists – just you and the ruins. It’s better that way, I think. You can walk through and think about the lives and contemplate spiritual motivations, and reflect on your own relationship with the divine.

About seven miles down the road is Jerpoint Abbey, founded by the Cistercians in 1180 and running continuously until King Henry VIII divorced the pope and took all his holdings in the kingdom.  

Jerpoint has some wonderful carvings on tombs that date from the Thirteenth Century, including “The Weepers” and “The Brethren.” 

The tower and cloisters are remarkably intact and the walls of several of the other priory buildings are extant. As we explored it, I realized that I was getting tired of looking at crumbling abbeys, so off we went.

Jerpoint Glass was our next stop. It is a functioning hand-blown glass studio on a small family farm. We sat and watched an artist make several paperweights. He collected molten glass, spun it into an orb, carefully tapped the hot glass into various color chips and mixed them in, spun it out some more, added more molten glass onto the core, evened it out, shaped it, then clipped it off and sat it in a warming kiln to cool. 

I admired the craft in making the art one object at a time.

We returned to Kilkenney and walked around the town. The air temperature was in the low 50’s but in the sun it was quite pleasant. The town features a “medieval mile” connecting the Kilkenny castle to the old cathedral. 

We ate lunch at a pub that was run by a woman who was convicted of witchcraft in 1348, but fled to London before her sentence could be carried out. The food was mediocre but the prices were high.   

As we resumed our walk, the sky started darkening so we started our drive north to the town of Trim. Along the way we drove through the only rain we’d seen since our arrival. We have been fortunate to have missed the rain throughout our trip. The rain let up as we pulled into Trim, another small town about 30 miles northwest of Dublin. We had a booking at Highfield House, our only B&B on our trip. 

It was located across the street from the Trim Castle and had a fine view from our room window of the old abbey tower across the river. Unfortunately, the bed was a double which would have made for a tight squeeze for both of us, but fortunately we were given a family room so there was a separate twin bed.

Friday Nov 5^th was another bright day. We walked along the river over to yet another crumbling abbey. Only a portion of one tower was still standing, although it was over 80 feet tall. 

Nearby was the “Sheep’s Gate” entry into what was the old town, with the remains of a shrine where travelers would seek blessings upon their arrival or departure. Across the river was Trim Castle, a fine fortress that was battered by Cromwell’s troops in 1650. 

Enough of it is still standing that it was a major filming location for Braveheart: York Castle, Longshank’s palace, and the site of Wallace’s execution. A nearby church was used for the wedding of the prince to the French princess. It’s a fine little town for a walk.

Our main reason for traveling to Trim was to visit the Newgrange Cairn, part of the Brú na Bóinne complex of ancient burial places located in Meath County. Newgrange is a passage tomb 500 years older than the pyramids in Giza and 1000 years older than Stonehenge. The cairn is huge, more than 100 yards in diameter, and standing more than 50 feet high. 

Its 96 kerb stones weigh more than 10 tons each, and were transported long distances by boat and log rollers. Some of the kerb stones have been carved with intricate triple circle spirals, diamonds and chevrons.   

The cairn entrance is large enough to walk through, and leads to a circular vault in the center with four side vaults set in a cross-shape. Those side vaults were used for the placement of ashes of cremated persons. Over the entrance is a window that is perfectly aligned so that the sun directly illuminates the center vault on the morning of the winter solstice. The cairn apparently was used for only a few hundred years, then abandoned for millennia. Because there are no written records, archeologists today can only speculate on its uses. It and the 40 or so other passage tombs in the area were overgrown and for centuries looked like natural hills. Newgrange was not rediscovered until 1698, and for the past 250 years it was a local curiosity where people would carve their names into the rock. Newgrange was systematically excavated between 1958 and 1965, and the entrance rebuilt to be lined with brilliant white quartz found at the site. It’s a remarkable feat of engineering that for over 5000 years the center chamber has remained intact and waterproof. Going there once again caused me to ponder the deep motivation in humanity to create structures to help explain the unexplainable.

Then we drove into Dublin and checked into the downtown Westin (using points again). Dublin is home to more than a quarter of Ireland’s population of 4 million. Ireland was under British control until 1922, so it’s a relatively young country. After decades of being a backwater, Ireland’s economy roared to life in the 1990’s helped by a literate English-speaking population, low corporate taxes, and free trade within the EU. The “Celtic Tiger” years were triggered by the 1994 Good Friday Accords ending the Troubles between the IRA and Provisionals. Between 1994-2008 Ireland generally and Dublin specifically saw tremendous growth. More recently it has been regrouping from the worldwide recession. We nonetheless found that Dublin was surprisingly expensive compared to Edinburgh, with food costing 30% or so more.

Our hotel was centrally located, across from the House of Parliament, just north of Trinity College, and the Temple Bar area 50 steps away. 

We booked a musical pub crawl and joined a group as we moved from pub to pub and listened to a mix of traditional and contemporary music. Dublin has over 2000 bars and pubs, and most of them were packed to the gills on a Saturday night. Our crawl ended at 10 pm and we turned into pumpkins, although the party just seemed to be getting started for most others.

We slept in on Sunday, Nov 6^th. We thought about going to church, but hadn’t packed anything suitable. We instead walked over to Krust bakery for a breakfast sandwich with a glazed cronut chaser. On a sugar high, we joined a Sandman’s free walking tour of historical Dublin, led by an energetic native who humorously mixed stories of the city and Irish culture over three hours. It was worth every penny, plus the tip (which is how the guide earns his pay). 

The guide asked where everyone was from, and I was surprised to see that, except for one other couple, all were from European countries. Likewise, most of the workers that we met in the hotel and shops were from other EU countries, especially southern or eastern Europe. The borderless Europe and dirt-cheap airfares within Europe has put its young people into a blender and scattered them around the continent.

After our tour, we drove to Kilmainham Gaol, the restored city jail where the British incarcerated and sometimes executed the leaders of the numerous rebellions between 1798 and 1916. It’s a powerful reminder of the power of martyrdom. The rebellion leaders knew they didn’t have a chance to succeed, but wanted to inflame the people with their deaths, and the British obliged. The people largely were apathetic about the rising when it happened, but the British overreaction (shelling downtown Dublin, causing hundreds of casualties), followed by the execution at the Gaol of the prisoners (including taking one from the hospital where he was sure to die from his wounds only to be strapped to a chair and shot) succeeded in raising the ire of the people. 

The rest of the fighters were imprisoned together in Wales, where they planned out the revolution. Released after the end of the Great War, they promptly started a guerilla campaign against the British, who after the slaughters in WWI had lost the will to fight, and granted Ireland its freedom, although keeping six counties in Northern Ireland for itself. (The Civil War that broke out immediately thereafter, and the Troubles that continued into the 1990’s, still is largely a taboo topic.) Dublin is celebrating the 100^th anniversary of the 1916 uprising, and images of the martyred leaders are everywhere. It seems to be a conscious attempt to reinforce a story of the creation of a country that is still emerging from the shadows.

Speaking of shadows, the specter of Brexit hangs over Scotland and Ireland like a hurricane just off the shore. Every day the implications of Britain leaving the EU was the subject of front page stories. Scotland very much wants to stay in the EU. Even though a Brexit likely would be to Dublin’s economic benefit, being the largest city with a native English-speaking population within the EU, Ireland wants nothing to do with having a border between the Republic and Northern Ireland, with all of the fears of sectarian strife that came with that. As we were leaving the Westin on Monday morning Nov 7^th, a conference was just getting started sponsored by the Irish Times and Accenture of what Brexit would mean to Ireland’s business community. My own personal opinion is that after a period of uncertainty, the British will decide to stay in the EU, which will make window dressing changes in response. But what do I know? I’m on my way home to a country that tomorrow will elect for president either a liar or an unprincipled egotist. I’m glad to have missed the last two weeks of the US presidential campaign, but I fear for our nation. 

On a positive note, this twelve-day trip to Scotland and Ireland was a wonderfully memorable way to celebrate Jennifer's and my 33rd wedding anniversary, with many more hopefully to come.