A Dozen Pounds of Trouble (Chemotherapy #40)

Posted on August 7, 2024 by Poison Jack

My wife, youngest son JH and I had a lovely vacation to Cook Forest, PA more than a week ago, and I will talk more about that later; but in the last couple days of vacation and while visiting my parents and sister on the way home, my abdomen kept growing noticeably larger while my skin felt very tight and uncomfortable, especially after eating or drinking. I began eating a couple very small meals a day and though my weight was not changing, my abdomen was looking very distended. A weeklong back pain set in and I could not find a comfortable position for sleep because it was painful to sleep on either side, and sleeping on my back was killing me; I just stared at the ceiling and shifted my weight, while my cat Elsie circled me, slept under my armpit, cozied up to me, and I think she was worried. That, or perhaps she was just opportunistically getting all the pets of a lifetime from this poor insomniac sucker who was clearly awake to pay attention to her and nothing much else.

Putting on a happy face and secretly hoping I haven’t been impregnated by Alien triplets

I wondered aloud to my wife how anyone could deal with a huge belly, constant back pain, high blood pressure, a stomach that can hold only a handful of food, nausea, pelvic floor pressure, and skin that was stretched as tight as a drum, FOR AN ENTIRE WEEK — and she shot me a strange, sympathetic look, picked up on my implication and said, “I’m sure cancer is much worse than pregnancy.” It was very sweet of her to say, but after four pregnancies with the same symptoms for the better part of a year, and where her abdomen was also being violently kicked, I cannot even imagine being able to survive. I felt very guilty about complaining in her presence because of that. Don’t get me wrong, I still complained, I just felt guilty about it.

July 30: New Scan and Not Great News

I contacted my oncologist with my symptoms and they immediately moved up my next CT scan and lab blood work from August 11 to the next morning, July 30. The scan analysis was full of troubling news. First, an epicardiophrenic lymph node has grown to 8mm from the usual sort of 3mm size and is an indicator of advanced cancer metastasis to a location between the diaphragm and the bottom of the heart. The scan also found two tumors in my left lung, 6mm in the upper lung and 7mm in the lower lung, and one 5mm tumor in the lower right lung, and a number of smaller tumors forming. Liver tumors have grown to 2.6cm from 2.1cm and to 3.0cm from 2.6cm. There are new tumors in the omentum.

The best news was that my platelets are now 117, and anything above 100 qualifies me to get on the waiting list for two different studies of promising new drugs that target my tumor’s KRAS mutation. There is a study in Virginia of a similar drug that may be approved by the FDA next year, as its preliminary data is very promising (but many other people are trying desperately to get into that study).

In the meantime, I have decided to step back to the FOLFIRI+BEV intravenous chemotherapy, which has some of the worst side effects to endure, but when I was on it a year ago it seemed to do the best job of arresting the tumor growth. It can buy me time to get into a study with a better drug. It wouldn’t be the sort of time I would spend cheerfully doing cartwheels in rolling fields of daisies; it would be more like a protracted battle with constant tummyaches and explosive diarrhea, but at this point any time I can spend with family and friends is precious to me.

So the chemo infusions were scheduled for a week later on August 6. I did not think I was going to make it until then because of the pressure and pain of the abdominal swelling and ascites — it felt like I was going to burst like Mr. Creosote after a wafer-thin mint (DO NOT Google this if you don’t know what it is!).

They checked out my abdomen, heartbeat, and breathing, and noted no bowel sounds so I was instructed to take a couple Colace each day to keep things moving. Then I was scheduled for a paracentesis procedure at the radiology center on Monday August 5th. In this procedure they poke a needle and tube through your abdomen and peritoneal sac to drain off the fluid, which is called ascites. This fluid can accumulate in your abdomen due to liver failure, cancer, heart failure, or pancreatitis to name only a few. I asked if it was easier than a liver biopsy and my oncologist assured me it was much, much easier to tolerate. I didn’t really care though, at this point I would endure just about anything for one night of comfortable rest.

The weekend of waiting was difficult. I drank very little, ate very little, and that kept me at a comfortable level of fullness, but the dehydration caused me a lot of foot and leg cramps. I got spiking high blood pressures, tachycardia and some chest pressure, so I took an extra metoprolol as my cardiologist advised me to do with the previous chemo regimen spiking my blood pressure. There was so much pressure on my pelvic floor that all my functions down there had no idea what was going on, it was awful. The weekend was a write-off because I sat uncomfortably in a recliner for several days. And I had so much stuff I wanted to do. So frustrating and disappointing!

August 5: The Paracentesis

I’m not just putting on a happy face here — I am absolutely THRILLED to get impaled by a needle at this point.

I’d like to say I woke up on Monday with a spring in my step, excited to get this procedure over with — and I was, but the truth is I didn’t wake up that morning, I was already awake because I barely got more than an hour of sleep the night before.

We went to the radiology clinic and nurse Robert was the most amazing guy ever. He was instantly likeable, put me at ease in seconds, answered a handful of my pressing worries, and filled me in on every detail of the procedure. No surprises like in my liver biopsy. I leaped up on the bed like a golden retriever getting treats, tail wagging! I really enjoyed chatting with the nurse and asking him questions about his military service. Such a great guy! Although I wish I never had to go through this again, I look forward to maybe seeing him again, probably in a few more weeks, sadly.

The doctor came and introduced himself, and they filled a syringe with a concerning dose of lidocaine and then buffered it with sodium bicarbonate to make it burn less. The doctor used an ultrasound with VERY cold gel to find just the right spot to go in, then cleaned the whole area with chlorhexidine. Another double-check with the ultrasound, and he warned me there would be about ten seconds of burning as the lidocaine was introduced. Honestly, I barely even felt the stick of the needle because he was injecting as he went and numbing it all very well. All I felt was a deep disturbing pressure, a little pause, and then a much more intense, deeper feeling, and the doctor said, “All done!”

I asked, “so now we do the tube?”

“Nope, it’s in there already!” he replied, and they hooked up a liter bottle to the tube and the draining began. It was a sort of cranberry sort of color and was filling the bottle at a fair clip, so they pinched off the tube after one liter and attached another bottle. When that bottle was about halfway full, my back pain melted away and vanished. It was the kind of miracle you ring up the Vatican and let them know about. After half the third bottle was full, I no longer had pain on the sides of my abdomen above the belt line.

In this way, FIVE LITERS got removed, though you have to leave some in there or your body rebounds and just refills it, so it wasn’t the full amount. They withdrew the tube, patched me up and in a few minutes I was on my way home, feeling so much lighter and I could see my shoes again!!

Feeling great after losing 12 lbs of fluid in less than an hour! Personal trainers HATE this trick!

I still have some discomfort as the puncture area heals, and I can’t immerse myself in water or take a bath for 10 days, but what a tiny price to pay for feeling so much better!! I was pretty absolutely wiped out with fatigue though, and immediately took a “nap” that involved many hours of catching up on sleep. I gained a little bit of appetite and had one cheese enchilada for my only meal of the day. My weight was 183.5lbs afterward, and 195.3lbs the day before.

August 6: Chemotherapy Round #40

It was another full day at the cancer center, starting with the lab work that showed my platelets are up to 125. I had an oncology visit afterwards where I had to make the call as to whether I wanted to go through with the chemotherapy, and sign consent forms. The pharmacy was slow that day so we spent a lot of time in the infusion clinic waiting room. Finally we got a beautiful room with a big window, where we could watch the darkening sky and then the deluge of rain from the edges of storm Debby. Nurse Isabel was so accommodating and friendly, and brought me a heated blanket to keep warm. My wife even got a recliner she could rest in, and I think we both took a few naps while the infusion went forward.

Back to listening to my Chemotherapy Playlist in the infusion clinic

The first part of the infusion is the administration of pre-meds Zofran and Decadron so I don’t decorate the infusion clinic with my stomach contents during the infusion. After a 30-minute wait, I got a little bump of Atropine and then the first chemotherapy drug, Irinotecan, was infused over more than an hour. This is the drug people call “I run to the can” and they are NOT kidding about that very apropos moniker.

Next was the Bevacizumab, it’s an immune system booster to help your system identify cancer cells and eliminate them, particularly that annoying metastasizing circulating cancer that ends up complicating things by spreading the love throughout your system.

When that was finished, I was hooked up to the 5-Fluouroracil football pump, which stays in a bag around my neck for the next 46 hours. I have to be home on Thursday for it to be unplugged from my port, my port flushed with saline and heparin, and then I am free!

After that, I hadn’t eaten all day and the only thing my stomach was craving was cheese and broccoli soup for some weird reason, so we picked some up with a soup & sandwich deal at… where else? Potbelly sandwich shop. I devoured the soup and less enthusiastically ate the sandwich. My stomach is still quite small so it’s still unpleasant to eat.

Now I’m editing this blog post after midnight because the steroids are keeping me from sleeping. ALL I WANT IS SOME FREAKING GOOD SLEEP. PLEEEEEASE!!!

July 20: Cook Forest Vacation

And now for something more pleasant and fun. I went with my wife and youngest son JH to Cook Forest PA for a week. We do this pretty much every year, and it’s a lovely time to join my mother-in-law Grandma K’s siblings for an annual family reunion. The forest itself is a state park and it seems to repel cell phone signals, so the vacation is always a nice time to be unplugged for a little while.

After weeks of triple-digit temperatures from hell back home in the Carolinas, it was such a relief to find days between 70 and 78 degrees, and cool nights.

We left town after work on Friday, though we left a bit late owing to a torrential downpour and thunderstorm that prevented us from packing the stuff into the car unless we wanted it all to be soaking wet.

I had a fantasy of visiting the Horseshoe Curve near Altoona on Saturday on the way to Cook Forest, but we ended up leaving a bit too late and hitting too much traffic to get there on time. Instead the GPS took us up quite a lot of backroads and straight through Punxsutawny PA. It’s such a cute town with statues of groundhogs everywhere, including a Wendy’s groundhog:

There is a Statue of Liberty groundhog, and too many to mention:

We stopped at the town square on Main Street and posed for the camera:

Posing at the town square in Punxsutawney PA

Some hours later we got to our hotel in Clarion. It’s probably cheaper than a cabin in the forest and has air conditioning and free breakfast! I liked this hotel, it was very nice and had an indoor pool:

We were hungry for dinner and went to the main street of Clarion PA at dusk:

We found ourselves at the Clarion River Brewing Company and had a wonderful meal there. I had a roasted tomato soup and the Cuban sandwich, with honey ham, pulled pork, swiss cheese, dill pickles, and Heidelberg mustard on sourdough bread, very tasty! JH had the Cajun Chicken Alfredo, and my wife had the Fire-Grilled Salmon and salad.

I conned my wife into getting a flight of four beers so I could have a little taste of each one. We had the Yeastie Boys, Horse Thief, The One That Got Away, and Ginger? I Pearly Know Her. She loved the Pear Ginger Cider and the Hefewiezen, I was more partial to the nitro stout and the English Mild. I was quite sad I am not able to have more than a taste of the beers, what with my liver tumors, but it was a nice treat to have that taste.

The Clarion River Brewing Company list of available brews.

Later that week, in Cook Forest my wife and son went on a horseback trail ride. It is beautiful in the forest because the canopy on the old-growth trees is high, there is a lot of shade on the trails, and there are beautiful ferns and mosses growing on the forest floor.

In the meantime, I kicked back in some rocking chairs on the lovely porch at the horse farm office, and did a little reading. I admired the pragmatic way the office roof was framed, locally milled wood of varying lengths were put to use in sections according to length and there were odd corners that stuck out, like someone either didn’t want to cut the rafters or didn’t want to waste any wood. And of course a poster of John Wayne stared out from the window. I’ve never been a big fan of self-professed white supremacist, racist John Wayne and his awful comments about native Americans being greedy and not wanting to “share” their land with settlers. It’s not called sharing when you displace people, march them to their deaths and steal what is theirs at gunpoint.

I think that a little brotherhood of mankind, love, the actual teachings of Christ (as distinct from the moral code of so-called ‘Christians’), sharing, mutual teaching, storytelling, trade, and understanding would have worked just fine… but again and again in history, we are lazy and take a simplistic, monolithic view of a tribe, or a religion, or a race and all its people get painted with the same brush. To avoid that, we have to understand all of the individual people and their stories, their choices and motivations and that is hard work. No one ever said that loving our fellow man was easy. It is easier to jump to the conclusion that the violence a lone person causes becomes the political position of every single person who is like our enemy. And suddenly, we have transformed one enemy into thousands, or hundreds of thousands, or millions.

It struck me as ironic that this sign was nailed to the wall next to the office with John Wayne. It says, “Turn in your weapons. The government will take care of you.”

I think it isn’t good for our hearts to hate everyone of a particular race, or gender, or orientation, or national origin, or religion. I have a song in my chemo playlist called Manifesto by Nahko Bear and Medicine for the People, and I often recite the chorus in my prayers when world events make me angry:

Don’t waste your hate
Rather, gather and create
Be of service, be a sensible person
Use your words and don’t be nervous
You can do this, you’ve got purpose
Find your medicine and use it

We joined the family later in the evening at the Cook Forest Fun Park, there is a pavilion there that the families that rent cabins there can use, so we gather there for nice potluck dinners. I made a couple things for various days like some yummy guacamole, and pimento cheese from scratch. We brought some pies for dessert.

The Fun Park has a mini-golf course, water slides, and go-carts and is located just outside of the Cook Forest State Park.

Dinners are served buffet-style and there is an unbelievable amount of food contributed, it is like Thanksgiving in July!

The newest addition to the family, only two months old, little M being held by cousin K and her daughter G.

One of the most delightful surprises of the trip was getting to see the newest baby in the family! Her parents flew all the way from the western United States with a 2-month-old to dazzle us with her charm and adorable cuteness. She was held and loved on almost constantly during her visit. Little M’s is a miracle baby and very lucky indeed since her parents are incredibly delightful, warm and intelligent and I just know she will be the same way — so many generations of wonderful people led up to this amazing new person!

Campfire songs at the pavilion after dinner, one of the most special treats as Uncle J has a phenomenal repertoire of great songs in his head and everyone sings along!

The Abandoned Clarion Railroad Tunnel

I like to keep my eyes open for interesting abandoned places, and noticed some months ago that there was one located not far from our hotel, south of Clarion PA. It’s not really easy to find but quite rewarding when you do. We set out one morning and parked at a trailhead nearby, then hiked down to where the old railroad trestles were located. Finding the tunnel should just be lining up the trestles and following a straight line, right?

We found the first stone pier in the woods, and apparently Spider-Man climbed up there with a spray can. How do these graffiti artists climb so well?

After crossing the river and scrambling up a hill, you can see the trestle piers all lined up and pointing the way. When you turn 180 degrees and look into the woods, you catch your first glimpse of the abandoned tunnel!

The concrete structure that surrounds and supports the opening of tunnels had long since collapsed and left rubble everywhere. There are perhaps 10 feet of rock and dirt covering the original rail bed.

One interesting thing in the picture above is that the long exposure captured the dripping water and made these three creepy-looking vertical water columns at the left side of the tunnel. They look like ghost lights flying up to the ceiling. The brickwork supporting the tunnel is impressive.

When you get to the brickwork you look down about 10 feet to a water-filled rail bed and if you have a set of Wellington boots or the like, you can trek all the way down and check out the rotting trestle on the other side that goes over the Clarion River.

Looking out from the tunnel at JH and the old rail bed.

There is a concrete retaining wall by the road that essentially marks the spot

We left the Clarion tunnel and took some gravel backroads looking to see if we could catch a glimpse of the old wooden trestle from the road. The woods were just too thick to see through, I think you would have to hike down there from the other side or kayak down the river to see it.

We ran into this amusing collection of signs on our way to our next stop, Tionesta. My wife’s great-grandfather lived for a small time in that town, and it has a couple of interesting sights to check out.

Funny Roadside Signs. “Good food / lousy parking” and “Too hot to keep changing sign. Sin bad. Jesus good.”

The Nebraska Bridge

On the way to Tionesta PA, we stopped at a bridge that is often partially underwater during rainstorms and high water. The water was low so it didn’t look as cool, but it is a fine bridge nonetheless, built sturdily enough to resist years and years of high water.

The town of Nebraska, Pennsylvania came into being in 1827, and in 1848 the town was named as Ford and Lacy Mills or Lacytown. In 1855 a post office was established and the town was named Nebraska. The town had stores, lumbering mills, black smiths, churches, hotels, and other homesteads. All which were torn down in 1940 when the Tionesta dam was built and the valley was flooded.

Here we’re approaching the Nebraska Bridge. There is a boat ramp to the left of it, and the old town of Nebraska was off to the right.

You can barely see, but in the distance is a fawn with half a tail, slogging through the mudbank. The helpful fisherman on the bridge told us he’s seen a couple like this, that coyotes try and grab them when they’re sleeping and the lucky ones only lose a tail.

The friendly fisherman left soon after we arrived; it didn’t look like he had any luck except for a little conversation.

Here I’m posing on the bridge with JH. I’m starting to develop a bigger tummy by this time, and it isn’t just the Hershey’s White House Cherry ice cream scoop I ate at the Cook Forest Fun park the day before. Cherry ice cream is my favorite! I think. Maybe any ice cream is my favorite. I’m not sure. A lot of times when I’m staring out into space and someone asks me what I’m thinking about, I almost always say, “ice cream!”

The Ersatz Lighthouse Park in Tionesta PA

I wanted to visit Tionesta mostly out of puzzled curiosity, in order to answer the question: why is there a lighthouse on an island in the Allegheny River? The river couldn’t hold a craft larger than a Jon boat or a pontoon boat at best, and there aren’t any dangerous rocks to wreck your vessels on. And so here it is, the Sherman Memorial Lighthouse:

A plaque to the left gives you the skinny on the lighthouse. Groundbreaking was on April 24, 2003. It is owned by the J. Jack and Grace Sherman Family. It was built as a beneficial landmark for the Tionesta community and to serve as a place to preserve the heritage of the Sherman family. The lighthouse is one of four in Pennsylvania. The other three are on Lake Erie (where it might actually make sense to have them). The lighthouse is 75ft high and 16ft in diameter. It consists of six floors and a basement. It has 76 steps spiraling up its center. The rotating light was installed November 10, 2004. The lighthouse was struck by lightning on August 26, 2003. The lantern room is 24 feet tall to the top. At the time of it’s [sic] commemoration on September 17, 2006, it displayed 280 replica lighthouses.

Lighthouse Island has a replica Statue of Liberty and it is chock full of patriotic decorations, sculptures, statues, and the like. There is even a chapel where we contemplated getting married again, all the while guarded over by a huge bald eagle sculpture:

Unfortunately, the door was not actually a functioning door, just a sort of model door that didn’t open. A short walk revealed that they were doing some yard work that day and had left the side door open, so I went to check it out. I expected a “here is the chapel, here is the steeple, open the side door and see all the people” sort of situation but instead noticed this:

The Chapel is just someone’s very ornamental tool shed. I think I could get behind a religion devoted to tools, so this is OK. Next I rang the Freedom bell. It was a very loud, solid bell for a tiny little lighthouse island, but that could be really handy for calling everyone off the river the next time a hurricane pulls up to Lighthouse Island.

Next up was the Freedom Memorial, dedicated to the loving memory of Fallen Hero. I liked how there was a bench for each branch of the armed forces: army, navy, air force, marines. No mention of the Space Force, but they could add two more benches, one for the Space Force and one for the Coast Guard I think. That would be cool.

After a nice walk around the island we were getting hungry for lunch so we went to see if Tionesta had any places to catch a lunch. It was pretty sparse except for a pizza place, which is pretty high carb so we skipped that. But the main street of Tionesta had a cute little art park where vendors had about a dozen little shops to sell their wares. See if you can find the sasquatch in the next photo:

We drove a dozen miles out of town and saw on Google Maps there was a restaurant bar called the Seldom Inn Restaurant. Sadly, it seemed as though the staff were, in fact, seldom in, because it was closed.

Instead, we had lunch at the Trail’s End Restaurant in Cooksburg PA. It was a nice homey, family-run restaurant with friendly staff — except for the ominous little sign in the entryway warning you that they are conservative Republicans and if you don’t like what you hear you can kiss their ass and go someplace else. I paraphrase, but I caught their meaning. Everything’s cool… I’m secure in my manhood.

I had a prime rib sandwich but was beginning to notice my stomach couldn’t hold more than half a meal, and my belly was starting to really get poochy and tight. I hadn’t realized yet what a trouble that would be…

Anyway, it was a little amusing that by the end of the meal some of the owners’ friends and family members showed up and hung out in the kitchen doorway discussing Biden dropping out of the presidential race, among other topics, and I felt like the shocking entryway sign was a fine way of keeping the peace with the customers.

Looking for some Wild Elk in Benezette PA (Elk County)

After 6 days in Cook Forest we left on Friday morning to meander down to Virginia to visit my parents and sister. I was hoping to see that horseshoe curve near Altoona but we got a little sidetracked looking for Elk in Benezette PA. On the way there we passed through the town of Weedville, PA, population 565, which had a little post office:

In addition to a post office, there was The Church of Cannabis Sativa and the Camp Sweetleaf store of locally sourced cannabis products and gifts. Ohhhhhh, WEEDVILLE. I get it!

We were looking for a place called Woodring Farm in Benezette but there was a big visitor center and we stopped to check it out. There was a big Elk Festival setting up for the weekend. One vendor was selling hickory syrup. I’ve heard of maple syrup but hickory syrup? Cool. He didn’t have any stock set up yet, or a way to sell it a day early so I never got to try any. In any case, we poked around the museum area and saw the lovely elk in the photo below.

Spoiler alert: this was the only Elk we saw in Elk County. We did see turkeys, a deer, and a snake so that was exciting. It was still a neat detour and hike, because the visitor center told us how to get to Woodring Farm:

The visitor center also had signs warning hikers to keep their eyes peeled for rattlesnakes. Yikes! So my eyes caught this little guy peeking out of the grass. He was cute. I’m no expert at nope ropes, so I can’t tell you what kind of snake he was, just that I kept my distance.

Snake peeking out at Woodring Farm Benezette PA

One of the stops on the hiking trail was an apple orchard, where some lucky photographer hit the Elk jackpot:

There was a little platform where you could sit and watch the lovely hills all day. Simply beautiful:

Virginia and Back Home Again

We used up all the time hiking so I never got to see the Horseshoe Curve, but we made it to Virginia in time to have dinner with my parents, sister, and brother-in-law JD at my favorite restaurant, Kilroy’s. I barely got to the halfway point on my dinner and couldn’t finish getting down more than half of my drink. This was the first of my mostly-sleepless nights, and the start of my back pain being a constant 24/7 thing, so to let my wife sleep I went upstairs and rested in my dad’s recliner, unable to sleep. At about 2am my father came out to check on me. But since he didn’t have his hearing aids in, and neither of us knows sign language, he went back to bed just as mystified as when he left it.

On Saturday we had a nice visit with the family and after watching the southbound I-95 traffic on Waze, all the accidents seemed to clear up around 6pm and we left for home. I stopped eating on Saturday, except for a little grazing on food here and there, because I’d figured out my tummy was much more tolerable.

So we’re all caught up… the next day I went to my paracentesis and here we are! Thanks for making it all the way to the end!!!

Running Short on Options (Chemotherapy #39)

Posted on July 14, 2024 by Poison Jack

It has been such a long time since I have written an update to the blog. When last I wrote, I was about to leave for the big Amtrak Zephyr trip and trust me, I will post about that trip. It was absolutely wonderful. I have been organizing and editing photos and writing text in between so all the non-TLDR types can spend time sharing in it. I am so grateful that I was able to have that experience and it was all I ever hoped for and more! I am so grateful to everyone who made it possible, and not a day goes by that I don’t think back on it, or talk about it with people. Even almost three months later it continues to bring me smiles and joy.

And right now it is good to have a bucket of smiles and joy that I can draw from when I need it. Despite keeping up my usual optimistic cheer, some cracks are beginning to form in the hopefulness foundation. My general day-to-day attitude is sunny though, and full of gratefulness at each new day that dawns. The darker bits of my odd sense of humor bleed through sometimes, but I don’t like the worry that crosses people’s faces so I try to scale it back a bit.

Medically, the journey grows ever more discouraging. I had a CT scan on June 18 to assess the progress of the most recent chemotherapy drug, Fruzaqla. I started taking Fruzaqla the week after the Zephyr trip, on April 23, and it was only recently approved by the FDA in November 2023. The main goal of the drug can’t be classified as any sort of miracle cure; it is the sort of drug developed to try and arrest or slow down the growth of Stage IV cancer. For many people it gives you some additional months of time. Despite its modest objective, it is by far the most expensive drug of them all, costing about $1,000 per day it is taken. I took it for 21 days, had 7 days off, then took it for 21 more days. Then we did the CT scan to see if it had any appreciable effect.

At first my oncologist said there were a few millimeters of growth in the index tumors that we are watching the most closely, so it sounded like the chemotherapy was doing its job and we decided to continue with the drug despite its horrible side effects.

And the side effects were indeed horrible. A few days into taking the drug I got very sick with a wet, productive cough and fever. I was given tests for COVID and the flu, and thankfully it was neither of those things, possibly just a side effect of the drug or an infection my poor struggling immune system couldn’t keep ahead of. I was instructed to hold off on taking the chemo and see if things improved. On day 4 of being sick I was coughing up tons of gunk to the point that my throat, nose, ribs and core muscles were burning with pain, I was getting constantly dehydrated from a full-scale revolution going on in my GI tract, and I got so weak I couldn’t get myself out of my recliner without falling backwards back into the chair. I realized with a dread seriousness on Sunday night, that I was not going to survive whatever this was without extreme measures.

On Monday morning, I woke up resolved to call 911 and go to the hospital. My oncologist’s PA called me at that very moment and we chatted about how dire things were, and she put me on a regimen of two different antibiotics. I was hydrating like crazy and I was feeling some improvement as quickly as six hours after taking the antibiotics. I weighed myself, and had lost 16 pounds. A couple more days and I was feeling more like my usual self, and we bravely restarted the chemotherapy and watched carefully. After finishing the antibiotics, I realized I had a weird aversion to meat: the thought of eating pork, beef, lamb, and chicken just didn’t appeal to me. It didn’t make me want to throw up, it just didn’t seem like food that human beings should be eating. This completely gutted my keto diet. The course of antibiotics also left me with what seemed like a complete inability to retain and digest food. About an hour after eating everything just went right through me. I ate a lot of yogurt, drank kefir, took probiotics, and fell back to something like a BRAT diet (bananas, rice, applesauce, and toast), but since those are entirely carbohydrates I took to eating bland foods with fiber. I had bread–which after being on a keto diet was just nasty–high fiber fruits like raspberries and blueberries, nuts, cauliflower and broccoli–sans brussels sprouts, which also did not appeal to me–and fats like cottage cheese, cheddar, goat cheese, parmesan slices, sour cream (yes, eaten with a spoon). I also had eggs for protein, since my GI system thankfully declared eggs as nihil obstat — so, deviled eggs without spice, french omelettes, hard-boiled eggs, and ajitsuke tamago.

The first big side effect of Fruzaqla is that I almost immediately lost my voice. I ended up with a fragile, quiet, hoarse sort of goose-speak that stayed with me until the day after I stopped taking the chemo for my 7-day rest period. The most horrible side effect was that my blood pressure went up from 112/62 to 178/96 and gave me headaches that felt like I was going to have a stroke at any moment. I started having chest pains, like an invisible finger was being pressed against my ribs quite hard. I grew sensitive to bright light (which still hasn’t completely abated), so whenever I went outside or was exposed to bright lighting I developed a pain in the gooey gel of my eyeballs that was intolerable and distracting because I could hardly think about anything else. I was also more fatigued than usual, and more fatigued than I ever remember being: after only a couple hours of sitting up in my chair, I often involuntarily fell asleep for a half hour or so, and after coming home from work I often slept for hours in the recliner, only to wake up refreshed and unable to sleep again for a few hours. Also after supporting my upper body in my chair at work, after a few hours my lower ribs and core muscles ached like I had just run ten miles. My liver transitioned to causing me almost constant low-level pain and discomfort. My feet grew very painful and I picked up some opportunistic infections that made it very painful to walk, especially up and down stairs.

And finally right after my anniversary, on May 23 I got a 7-day break from the chemo and I suddenly had energy! My core pain, foot pain, muscle aches, and fatigue mostly went away! It started to become quite obvious which [quite tolerable] symptoms were probably the cancer and which [horrible annoying] symptoms were the chemo. I decided on May 28th that this was the worst chemo of all of them. Worse even than irinotecan? Maybe. You see, the difference between being loaded up to bursting with a bag of IV chemo that felt like a caustic river of poison and a tiny one-a-day chemo pill is that at least with the bolus of chemo you suffer but every day afterwards is better. The Fruzaqla was quite the opposite: every day worse than the one before, and you find yourself eyeing day 21 on the calendar and wondering if you can make it. It’s a sword of Damocles sort of situation because you feel like any day that single strand of horse hair might break and you will suffer a sudden and fatal blow.

Luckily after a consult with my cardiologist, my heart medications were adjusted to help my blood pressure come down to not an especially good level, but enough to improve the headaches and feeling like a stroke was imminent. This enabled me to soldier on and take a second round of Fruzaqla and though it wasn’t at all pretty, I got through it.

The Actual CT Scan Results

So a couple days after the June 18 CT scan and doctor’s visit where we decided to continue a couple more cycles and follow up with another CT scan, I was able to access the CT scan analysis report on the MyChart application and I was a little shocked at what I was reading. And what I was reading was not particularly good.

First of all, my carcinoembryonic antigen (CEA) levels were now at 288.5. If you plan on living to retirement age, you had best hope that the level is under 2.5. This is almost doubled from the level on May 7.

A couple tumors in my liver increased in size. A tumor in the left hepatic lobe grew from 22m to 26 mm, and one in the posterior right hepatic lobe grew from 15mm to 21 mm. In the photos below, it looks alarmingly as though there are new tumors present but they represent small tumors that were evident in higher or lower slices and have grown into the slice you see.

The tumor on my peritoneum is probably the biggest concern as it can begin to leak lymphatic fluid into my abdomen, which would need to be drained if it got to be a large amount. The peritoneal tumor increased in size from 12mm to 21mm, which is a substantial 75% increase in diameter.

In my last visit with the oncologist a couple weeks ago, I told him I felt the chemo wasn’t working well enough to justify the unpleasant and potentially dangerous side effects. My liver is quite overstressed at this point, my bilirubin levels are increasing, my blood platelets are going down, and my liver numbers are going up. He agreed with this decision and we discontinued the Fruzaqla chemotherapy. That is the last FDA-approved treatment available to me, unless we want to pursue dusting off some decades-old IV chemotherapies that aren’t likely to help much.

It’s discouraging news, but for some reason it hasn’t gotten me down like I thought it would. It’s lit a little fire under me to make sure I get some legal affairs in order, but emotionally I feel pretty solid. I’m going to keep on driving:

Good News, X-Men… I’m a Mutant!

Or at least, my cancer is. But this is how good comic book origin stories get started!

My tumors have been genetically sequenced a couple times a year so that the most effective therapies can be prioritized. That testing found that I have a mutation called KRAS. Cancer cells with KRAS mutations are fairly resistant to chemotherapy and immunotherapy, and they grow aggressively. For my type of cancer, the median survival rate of people with KRAS mutations is about 2 years. I’m currently at almost 3 years, which is pretty respectable.

There are two promising studies of competing drugs that target the KRAS mutation and use it to deliver targeted chemotherapy to any cells presenting KRAS. In order for me to be considered for the study, my platelets need to be above 100. When I took my 7-day break from the last round of Fruzaqla my platelets were 44. Two weeks ago they were 67. If my platelet levels can bounce back, I may be eligible to try this experimental drug. This is another reason why I’ve decided to stop taking chemotherapy at this time.

Apparently it’s tricky to get those platelets produced: rest and exercise help, but eating leafy greens and iron-rich foods helps. Also the same kinds of meats I’ve had an aversion to lately, I’m learning to choke down. Also liver! Hmm.

So let’s cross our fingers and hope Plan B works out!

In the meantime, I’m taking advantage of having energy again and trying to venture out and enjoy life. I have been so fatigued the last few months from the chemotherapy, that I haven’t left home on exciting trips in a while. I’ve been doing fun things around home when I have the energy. Here’s the sort of stuff I’ve been up to:

Northern Virginia and Richmond

I went with my oldest and youngest sons to Virginia to visit my parents and sister. We had great food and chilled out for the weekend. It was nice to just unplug and relax. I’m always so stressed on weekends because I don’t feel like I have so many of them left, so I have a big checklist of things I’m trying to accomplish. But for months I haven’t had the energy to check off a lot of those items and it disappoints me. But being surrounded by family, love, and stories makes me forget everything and just live in the moment, which is also good for me.

Mom, Dad and Both Kids together like old times

I guess that a new part of our family ritual is that we talk about all our medical problems, and everyone has got them. I probably wasn’t paying attention to this because I never noticed it when I was a kid, but it seems like a lot of gab by people over 50 is spent sharing doctor experiences and medical horror stories. I don’t remember us ever talking so darned much about poop! Well, except when I was a toddler. We come into this world as babies needing careful care and toilet training, then we live, love, and dance around for a few decades and then we need careful care and toilet training again… and THAT is the circle of life I think.

I got to help with technical issues on my sister’s quilting machine. Pictured above is a seriously cool piece of hardware for stitching the whole quilt together with the backing and all the layers. We did all this while dinner was cooking, and what a great dinner it was! We called it “suitcase salmon” because my sister brought a bunch of frozen wild-caught salmon home from Alaska on a recent flight and it was sort of funny to think of all that fishy cargo. Don’t knock it though, it was incredible salmon:

Delicious Wild-Caught Alaskan Suitcase Salmon

We also got to meet my sister’s new kitten, Princess Daisy Moonbeam G. She was so adorable, we all covered her in welcoming kisses and attention.

I got to have lunch and dinner with my friend Bick in Richmond to celebrate my birthday, and we had Cuban roast pork for lunch and NY Strip Steak for dinner as I try to get back on track with my keto diet. He gave me his old matched pair of 27″ gaming monitors which are awesome in my secret lab as I slowly go blind. It’s nice not having to squint so much at the tiny letters.

Happy Birthday to Me

My birthday was spread out over several days this year, which is a nice indulgence I don’t normally experience. But on my birthday itself, my oldest son IG took us out to one of my favorite restaurants, Bua Thai, where his best friend makes the desserts. It was a great dinner and I ate way, way, too much and went home and fell asleep.

My darling wonderful wife made me a keto cake inspired by the legendary Raspberry Zinger. It had whipped cream frosting flavored by powdered freeze-dried raspberries and Stevia. The following cake is one that she made, but I realized we demolished her birthday cake before anyone thought to photograph it so… the cake pictured is an appropriate placeholder:

Due to work schedules, we couldn’t include our middle child JJ in the Bua Thai dinner so the next night we celebrated a birthday make-up dinner at El Rodeo Mexican Restaurant. My wife had two medium margaritas and I had a little taste which was delicious but much sweeter than I remember. It turned out that two margaritas was a little bit much because my wife knocked over her glass of water while emptying leftovers into a carryout container and it was directed mostly at our oldest son IG who was left with a shocking ice-cold crotch water bath. His horrified expression was priceless. I ended up tipping extra because it took several people to clean up the mess and I felt bad. One of them picked up on the fact that it was my birthday (you should NEVER say that word in a Mexican restaurant!!!), and I got the embarrassing Sombrero moist-feliz-cumpleaños treatment since by that time my pants were also kind of wet. Fun times!

June 29 Beach Trip!

I went to Ocean Isle Beach with some of the kids and we stayed in my sister and brother-in-law’s beach house. I made a little project out of fixing the deadbolt strike plate, which was actually just a lockset plate which creates problems. It fits fine in the winter months but with wood expansion from the heat of the summer, the deadbolt doesn’t line up correctly and the place can’t be properly locked. I didn’t think to bring tools but I found a sale on a cool cordless craftsman drill for $50 and with some chisel work and drilling, I got a new strike plate to fit correctly.

We went in separate cars so I was able to wander around alone. I hit some crazy traffic going to the nearest beach so I went up to Sunset Beach instead and walked around for an hour before the 90-plus degree heat seemed about to kill me. I went to Boundary House and got a bowl of their awesome clam chowder, and wandered through tourist shops. I went to Ocean Isle Beach later when it was dark and cooler (82 degrees!). I was able to walk into the water which felt heavenly on my poor abused, neuropathic feet. I probably looked like an idiot standing in one place with a blissful smile on my face, not moving anywhere; but I didn’t care. I’m going to do me.

On Sunday we packed up and went to Myrtle Beach, then headed home from there. I ran out of energy at Benson NC and slept a couple of hours at a rest stop on the way home. My fatigue isn’t as bad as when I was on the chemo, but it is still there and when I’m out of energy I am completely spent.

June 16: Father’s Day!

For Father’s day we went to a Durham Bulls game with my father-in-law, my oldest son IG and my youngest JH, and nephews AZ and WZ. Getting tickets was tricky since the park was nearly sold out and finding 5 together was not possible so I got one lone ticket a few seats away. But happily there were some no-shows next to us and we were able to all sit together.

Sadly the Bulls didn’t win but we had great seats under cover from the sun and there was a cool breeze making everyone more comfortable. My father-in-law is a huge baseball fan and it is fun to listen to baseball stories and trivia. He always wears his Detroit Tigers cap that IG got for him, and the Detroit “D” logo could be taken for a Durham “D”, so it’s kind of a double-fan service.

May 28: A Day Trip to Hillsborough NC

Hillsborough is only a dozen miles away from Durham, but having an extra day off on Memorial Day weekend, we thought we would take a day trip down. We have already visited Ayr Mount a couple of years ago. It’s a beautiful house built in 1815, and I highly recommend going on the tour.

This time since I had just finished round 39 of chemo and was starting to get my sunshine back, my wife suggested we do a nice flat hike around the Occoneechee Speedway Trail. It meanders over to one of the first NASCAR tracks, which now sits overgrown and abandoned, but is a beautiful flat walk. And it ‘s really only a little hike from Ayr Mount, if you don’t mind fording a river and some wild underbrush.

The old track is still there as a trail, and you can still see it curves up on one side. It is comforting to me to see nature reclaim a place that had been utterly cleared of trees. I fervently dislike humanity’s destruction of wild spaces and habitats, and these kinds of abandoned places leave me with such misanthropic pleasure. I’m not a fan of humanity but all the individual people I meet, I love so much. I’m never sure how to square that in my head.

Posing with my lovely wife on a bench and realizing the race is never going to start.

There are a couple rusted out cars still present. There’s something sad about those lost old vehicles. Once they moved under their own power and had all the freedom of the roads to look forward to. Then something breaks and people gave up on fixing them, and they just fell in the battle with time.

It comforts me to know that the fate of all civilizations is to be reclaimed and covered in ivy and forest. All the cacophony and frenetic activity will be replaced by peace and the haunting buzz of cicadas. Niiiice.

Next we went to Spencer’s Tavern in town. It’s attached to a little in called the Colonial Inn that’s finishing its renovations and looking very handsome indeed. It has a menu full of lovely southern comfort food dishes prepared expertly and creatively. I had Fried Green Tomatoes and Deviled Eggs, and a hot Ham & Cheese sandwich. One of the old members of the Squirrel Nut Zippers was at the table next to us!!!

After a fantastic lunch we went to the Orange County Historical Museum which was small but quite interesting. I learned that Mazda used to make light bulbs!

And I found an amazing desk and a sign I want on my office door at work:

I also saw this cool old radio that was preserved in excellent condition, with two owners before it was donated to the museum. It is believed to be the first residential radio in Chapel Hill in the 1920s.

My wife got tired walking around before I did, which is highly unusual these days. But I did drag her to the cemetery to find the grave of someone who is quite possibly one of my relatives, William Hooper, who was a signer of the Declaration of Independence.

May 25: Durham Bulls Game

It was my second Bulls game this year out of three so far, and we went with my son IG’s coworkers. We were able to bring my father-in-law along as well and we all had a wonderful time. There were fireworks after the game, which was loud but exciting. One really nice thing about having an expiration date on your life is that you can embrace all the cool things you couldn’t do to your ears before like go to concerts with no earplugs, playing headphones at max volume, and pumping your music in the car so loud that the windows bulge. Oh yeah!

We got a visit from the Bulls’ awesome and beloved mascot, Wool E. Bull.

My son IG took this incredible picture of Grandpa Z rooting for the home team

May 23: Pool League

I am still able on most weeks, to play at least one match of pool every Thursday night and I have been improving greatly, holding my own as a rank 5 player. I have even begun winning some 9-ball games! I wonder if I can get to a rank 5 in 9-ball as well! We have an incredible team and I hope that we make the playoffs this season, there are a couple more weeks to go and we are playing pretty well. We took this selfie on my phone because my wife realized she didn’t have any photos of me at pool league:

30th Anniversary!

Our anniversary began with a trip to the lab and to the oncologist. I headed to work and after work we celebrated our anniversary with a dinner at one of our favorite date spots, Parizade, which has incredible mediterranean dishes.

It’s been thirty wonderful years of marriage to the most delightful, witty, patient, resilient, and beautiful lady I’ve ever known. Life together is full of joy, laughter, and thought-provoking discussions. Even life’s little curveballs are easier to handle as a team.

That pretty much catches us up except for the Zephyr trip, which I am continuing to document. A week of travel is a difficult thing to get time to narrate and post. Stay tuned!

Hitting the Road a Little

Posted on April 8, 2024 by Poison Jack

The time until our Zephyr train ride grows short, but I’ve been lucky to have a few little weekend trips. I’m off the chemotherapy for now, but have picked up the new immunotherapy prescription called fruquintinib/FRUZAQLA 5 mg. I will be taking it once daily for 3 weeks, with one week off. The medication starts on April 24 as soon as we return from our Zephyr vacation.

April 8, 2024 – Lunar Eclipse.

Not having a lot of vacation left aside from what I have reserved for our Amtrak trip, I would have loved leaving town and going to see the eclipse somewhere. My Aunt RM told me I should go up to her house off the St. Lawrence River, in the path of total eclipse, but it just wouldn’t work out and with my luck I would have ruined everyone’s experience with terrible cloud cover and thunderstorms or something.

But in North Carolina we woke up to a cloudy sort of day that turned perfectly clear, and I found my 2017 eclipse glasses in an envelope in my desk at work. So my wife came to my office to share the glasses with me, and we sat at the cafe chairs behind my office building and enjoyed the 83% eclipse together.

This was my favorite photo, my wife’s silhouette next to the points of light that shone through the leaves of the trees. You can see the arcs of sunlight and the darkness of the lunar disc. Pretty cool!

April 6, 2024 – Ocean Isle Beach.

Last weekend I joined my sister SG, brother-in-law JG, and niece BG and her husband BR at Ocean Isle Beach. I sleep so well and restfully at my sister’s beach house. I don’t know if it’s the clean air, the silence, or being secure in the knowledge that I am safe in Brunswick county where every single person is armed to the gills… but I sleep really well. The beach was really perfect, sunny and not too hot, with a bit of a cool breeze, and at low tide there were shells everywhere. It was nice to put all cares aside and wander up and down the beach.

April 3, 2024 – Durham Bulls vs. The Jacksonville Jumbo Shrimp.

My employer has a box suite at the Durham Bulls Athletic Park and from time to time it gets offered to different teams. I put in for the drawing to get some of the tickets and got enough to bring my family’s two biggest baseball fans — Grandpa J and my oldest son IG. We got to watch the Bulls win against the Jumbo Shrimp.

I haven’t been to a baseball game since before the COVID, and we had a great time. It’s still early in the season so the game wasn’t as packed with people as usual, which was nice when we went down to get some concessions.

April 1, 2024 – Visiting my Lunch Bunch friend MG

Every week I bring groceries to my friend MG, who is sort of homebound at this point with 24-hour home care, but most of the time they are able to still bring him to our Bosphorus lunches. On other days I visit and get all his medications ordered and renewed, and apportioned into the appropriate slots of his pill case for the week.

This particular week, the weather was beautiful though saturated with pine pollen, and his home care worker F took him on a walk round the corner to the park so he proposed that they get married. She didn’t accept because he couldn’t remember her name and is maybe fifty years her senior, but hopefully she was flattered and not too put off by his all-too-frequent offers. He is back to feeling a bit more like himself after a couple health setbacks and hospital visits and though his short term memory isn’t all that reliable, he still really enjoys getting a visit.

March 30, 2024 – Johnston Mill Nature Preserve (a.k.a. The Poop Bag Trail)

The weather was very nice this day, which afforded me and my wife the opportunity to walk around the trails of the Johnston Mill Nature Preserve not too far away from our house. A dozen other people had the same same idea. We were sort of smitten that day with hackberry trees and kept finding them on and around the trail. There were some nice benches to rest on, which was good for me when my energy might be flagging.

The weirdest thing, though, was the astonishing number of little baggies full of dog poop I ran into everywhere. Now I can’t wrap my head around the sense of striding through the woods with my trusty pooch, watching him leave the trail and deposit his waste somewhere off the trail, then using a plastic bag to fish the poop out of the poison ivy, tying a knot in the bag, and then strategically placing the bag at the trail’s edge for the dog poop stewards to come by and pick up later. That dog poop would have biodegraded in weeks into nutritious worm food but now we have to wait 300 years for the bag to degrade first.

Can anyone explain the sense in this?!?!

March 28, 2024 – A Nearby Lunch Visit

My Aunt RM stopped in my city on her way down south, and we had lunch at the local German bakery, Guglhupf.

Me and my Aunt RM at Guglhupf, photo from her Facebook post since my selfies were crappy.

We had a great lunch and I was very happy to see my Aunt RM! It is sad that we only get to spend time together a few times a year. Family is such a treasure in life and I am constantly grateful that I am in a great big one, with so many wonderful relatives!

We had a great meal, I had a bratwurst sandwich on a fresh homemade pretzel roll with house made sauerkraut, mustard, and a side of a very yummy sausage soup. I wasn’t able to really enjoy the pretzel roll due to the keto diet but I had a little and it was fantastic!

Aunt RM had about 70% of a reuben sandwich and she let me finish the corned beef at the end, and it was probably even better than the bratwurst.

I was so full of joy that my aunt made arrangements with me ahead of time so I could work from home that day and get to see her for lunch. She had spent some time at my parents’ house a few nights earlier and was able to give me her impressions of how they were doing. I am always amazed by Aunt RM, at how much energy and love she has to spare. <3 Truly one of Earth’s best humans ever!

March 24-25, 2024 – Asheville and Boone with JH.

I took a floating holiday off from work to take my youngest son JH to a personalized tour of the art department at Appalachian State University in Boone, NC. He has been thinking hard about which school he should attend, and to help in that decision we’ve been taking him to one-on-one tours of the art departments of each school where he has been accepted, to ask questions and get a better feel for the program and how it can move him closer to his career goals. I’m pretty proud of how much thinking and effort he’s putting into comparing the schools. I think he’s much wiser than I ever was about making big life choices. I pretty much always did what I felt like doing and made up reasons for it after the fact. He’s much more of a thinker and planner than I am.

We went on Sunday to Asheville as kind of a fun father-son outing. I’ve been doing a lot of last-minute planning in the last several months, going to see things I’ve always wanted to see, or to see things I just discovered I want to see, or sometimes going, just to kick the regularly scheduled pattern of life in the ass. I am really beginning to feel the detrimental affects of the cancer now — the fatigue, the liver discomfort, my sore core muscles when I overdo it, the continuing poopy concerns, nosebleeds, and the now-frequent headaches — so when a weekend comes and I am actually feeling good, I feel like I should be doing something. I should be moving as though perhaps I can hide and avoid things getting worse. Movement and activity seem to make me feel better in the even though in the short term it’s tiring. And my brain likes the distractions of new things to think about that I didn’t know before. I find myself craving information if I find it interesting.

So JH agreed to hit a few Asheville sites we might both find interesting. We woke up in the morning and drove out to Asheville. It was cold on the way there, temperatures were in the low 40s and I got chilled to the bone just filling the car with gas.

We started at the Grove Arcade, a neat historic building. Out in front were a half-dozen artists selling their work and we got to chat with them in some detail about their inspirations, what mediums they liked working with, what pieces really hit it off with customers, and similar discussions. I love seeing and hearing about artists’ journeys to find a balance between the stuff they love and the stuff that sells, and when sometimes these converge into profit or at least into the dream of breaking even. Sometimes art is a habit that you support financially and you’re just trying to minimize the damage. I have a deep sense though, that great work sadly transcends price tags and is best measured in the joy of experiencing a work that you have in your possession again and again in your life, how that work continues to live with you and speak to you even as you change.

We passed through the arcade and spent a nice few moments trying on hats in the hat shop, and looking at the textile art being sold there. We went to a clothing consignment store called Sugar Britches that was closed the last time we went by.

It was a fun, welcoming place with a lot of theater costumes and quirky handmade pieces. It was easy to spend a lot of time browsing.

After the Sugar Britches we stopped by a well-stocked candy store called Rocket Fizz that was doing a brisk business in one of the most addictive substances known to humankind. It had a little section of sugar free sodas and candies, so I got a couple things including a Boylan’s Diet Black Cherry soda! I had no idea this even existed, and haven’t seen it since.

We stopped in at one of our favorite places to visit and browse, called Madam Clutterbucket’s Neurodiverse Universe. It has a museum of stereo cassette tapes up on the wall as you walk in.

We found a really cool knit brain hat there that looked awfully smart.

Next we went to the Asheville Pinball Museum, a place I’ve wanted to go to for a long while. I have a tender place in my heart for video arcade games, pachinko machines, and pinball machines (even though I really stink at pinball, it is fun).

It was full when we got there so we spent $5 to play arcade games downstairs in the video arcade museum, and the $5 ticket price there gets applied to the $15 ticket for the pinball museum.

In addition to about 20 other games, they have a Pengo machine, and a Robotron. I own both of these arcade machines (and a Smash TV), though my Pengo’s sound board doesn’t work anymore. It’s on my to-do list. It was nice to hear Pengo playing the Popcorn song. A little fun trivia — Popcorn was a copyrighted song and they used it in the game without asking for permission, so after Sega had its butt sued into oblivion, they produced a V2 (version 2) board with its own, even perkier tune (if such a thing is possible). I have both printed circuit board versions at home but in deference to the copyright fiasco, I keep the V2 board installed. And then the sound board broke, so it was an upgrade that probably didn’t make a difference. And probably lowered the value of the game since the original V1 board in its original cabinet is probably worth more money. My changing it out was probably an act of video game heresy. But I do have the intact, well-preserved V1 board handy.

Once in the pinball museum you can play all the pinball you like until closing time for that $15 entry fee. It’s a bit of an assault on the senses since there are something like 75 machines in there, and there are a lot of boinking, buzzing, chirping, and bumping sounds filling the place.

I think heaven will be a lot like THIS place. At least I hope so.

We stopped for a snapshot by a big iron… it reminded me of the Marty Robbins song, “Big Iron” which kind of haunted my brain for a while afterwards.

Wondering how the ranger’s aim was so deadly with a Big Iron on his hip

Next, since Jacob tolerated me playing games for hours and he was the guest of honor on this trip, I let him pick a place to eat dinner. We ended up at Sonora Cuchina Mexicana, which was fantastic.

I had a very fancy chile relleno that was thankfully not too spicy for me

After dinner we left Asheville and traveled to Boone to check into a hotel and visit Appalachian State University the next day. We drove past Grandfather Mountain and took the Blue Ridge Parkway at dusk. It was a beautiful drive and we got to see the Worm Moon through the wispy clouds.

We stayed in a really nice hotel in Boone called the Greystone Lodge that was a great value for what a lovely and well-appointed hotel it was. It had an outdoor bonfire where you could sit in Adirondack chairs and toast smores kits, a nice warm indoor pool, and a simply fantastic breakfast with bagels from a local bakery.

The next morning we had an individualized meeting and tour of the art department with one of the professors, where we got to ask questions, learn more about the different concentrations of study within the art program, and we got to stroll around the campus. We went to have fish and chips at a local pub for lunch, and then since JH was excited about seeing Grandfather Mountain in more detail, we returned there and spent a few hours touring around. We went to the visitor center, then to the animal exhibit where we saw a black bear, elk, and a bald eagle (the otters and mountain lions were nowhere in evidence at the time).

We got to cross the mile high bridge, which made a spooky whistling noise in the high wind, and we scrambled up to the peak.

We then hurried back home for dinner with Grandma K and Grandpa J, and my wife’s brother FZ, his wife and two daughters. It was a very eventful trip!

dietpoison

My colon cancer and other misadventures

Category Archives: Travel