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.
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’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!!
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.
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:
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.
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.
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.
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!
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.
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.
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.
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!!!
