A short journey to Ithaca New York

Abby's 21st birthday seemed like  the prime opportunity for my first visit to her new home turf.  The calendar window was open.  It is my observation that visits between parents and children are best when they are short and sweet.  Longer than a few days and old patterns begin to emerge. "Leave them wanting more" seems to be the best policy.  So I left Friday at noon so as to arrive about the time Abby was getting off from work Friday night.  I would leave Monday morning so I would arrive home in time for a good night's sleep before my early Tuesday morning chemo appointment.

Looking at a US map and drawing a straight line seems to indicate that the obvious way to go is cutting through Canada at Port Huron and back into the US at the Niagara Falls.  So armed with GPS, a passport and audio books I set out on the 9.5-10 hour solo drive.  In the past, I've discovered that suspense stories are great for maintaining alertness so I picked out a Stephen King book containing 4 novellas as my first choice.  I estimated this could take me through both legs of the trip.

Arriving at Port Huron, there was only a moderate wait at the border.  Soon I was on my way. calculating Kilometer conversion on my speedometer.  Turns out that it was not really necessary because there was a lot of traffic and highway speed was a given.  I noted that Canadian drivers were  more aggressive drivers and was rather surprised at how many times someone cut into the safety gap in front of me.  Driving really slowed down around the last southern leg along side the western tip of Lake Ontario.  I watched the arrival time on the GPS slip later and later all the way to Niagara Falls.  At this border crossing, the border guard looked incredulously at my passport picture and asked for a second ID.  My driver's license picture, like my passport picture is chubby and hairy (pre-cancer) and so I had to resort to the chemo story this time (and both border crossings on the way home).

Current me on left, chubby passport Chuck on the right. Would you let this guy into your country?

The first New York leg at Buffalo is a straight shot toll road due east.  When I turned off, it was quite dark and the roads the rest of the way to Ithaca were winding rural pathways.  I would be quite lost relying on a map without a navigator sitting next to me.

GPS took me right to Abby's driveway.  It was a duplex and her landlords were having a bonfire party so there were cars everywhere.  But Abby had her own stub of a driveway on her side and it was a confort to see the Michigan license plate on her car and a gap to squeeze in my car right next to hers.

September 27, 2014

It was close to 10pm and and I was real tired but it was so great to be greeted by Abby and her cat Eloise.  After a little catching up, an apartment tour and general planning, I rolled out a sleeping bag on the couch. We started to watch a DVD but I was snoring within 15 minutes.  Eloise is clearly a great companion for Abby by the little traitor slept with me all three nights.  She's a little hard to see in the picture on the right because she is all black.

In the morning, it was Abby's birthday and I was glad to be there for the occasion.  She arrived 21 years ago in the very early morning and I remember the event clearly. She was alert and healthy.  It was a home birth. Both sets of grandparents were on hand.  The midwife barely got there in time because she progressed so quickly.

September 27, 1993

Unfortunately, Abby could not find a co-worker to take her shift at work so she had to spend a good chunk of her birthday from noon until 9:00pm at Trader K's.  We did a little birthday shopping for some apartment needs in the morning and then made plans for a late lunch/early dinner during her break at 4:00 and then meet up after work to try out her new powers ordering an adult beverage at some local watering hole.

I did a little hardware shopping and went back to her apartment for a few handyman chores.  Lunch dinner was an egg salad sub at the food court Subway near Trader K's.  It was "Free Cookie Saturday" so a chocolate, chocolate chunk cookie served as birthday cake.  Back at the apartment, I connected with my other Ithaca contact via Facebook Messenger.

 I originally met my old friend Armin at a national Public Access Television Conference back in the late eighties or early nineties. He held my job equivalent at the Buffalo, New York Public Access Center and we hit it off immediately and co-published a Public Access Trainer's newsletter that he laid out on an Amiga computer.  He left Buffalo to pursue a Library Science degree and secure a job as the Ithaca High School Librarian.  I had visited Armin and his wife, Gail, once in Buffalo and once in Ithaca when the girls were little.  They visited us once in Michigan but it had been at least 15 years since we had seen each other and they now had two boys, Toby & Leo, whom I had never met.  The boys happened to be out at a friend's house and Armin and Gail were getting ready to go out for dinner at a Vietnamese place. They invited me to join them and I readily accepted. After dinner, I hung out while Armin prepared for a monthly radio shift that he programs. It airs on Sunday morning so he needed to get it bumped to CDs that evening.  He is an expert in Alt Country music and has a fascinating system for organizing a show in advance using iTunes.

At nine o'clock, I called Abby and we decided to meet back at the apartment rather than at her work or a pub.  She was exhausted and did not really want to go out again for that drink.  So we cracked a bottle of white wine that I had picked up and tried another DVD movie.  Once again, I was snoozing in no time.

Sunday was to be our big day.  We had planned to have brunch with Armin and Gail and the boys right after his radio shift ended at 10:00am.  The 6 of us walked to the Ithaca Bakery and secured an outside picnic table on this perfect morning.  Toby and Leo were delightful, never short of conversation topics and personal interests. After brunch we walked to the Ithaca Farmers Market at Steamboat Landing and checked out the sights, smells, live music and people.  We took a leisurely walk back to the house and posed for some stoop photos before saying goodbye.

Armin & I share the same haircut and weight loss characteristics but his are due to his obsession with riding his bike. We also share the same birthday.  Gail is a Middle School Librarian and a lovely person. Abby connects with her as simpatico.

It was an incredibly gorgeous day and we decided to find a hike.  Abby knew of a good one; pretty, flat terrain through a gorge, leading up to a tall waterfall.  We took it slow with plenty of stops and conversation... and this still picture that accidentally was taken as a sideways movie:

 

 Of course, with the warm weather and the brunch wearing off, it was time for some  artisan ice cream at a shop we found just up the road.  We then headed back in the general direction of the apartment with a side trip through the Cornell University campus and a quick stop at a Wegman's grocery store .  Abby also lined up a dinner for us with her boyfriend, Adam.

Adam is a police officer and lives and works in the rural town of Cortland; a college town.  He gave me a tour of his house that he was rehabbing.  He bought it as a foreclosure home in very bad shape so he got a really good deal and has done a wonderful job fixing it up.  We took his truck into town to a place called Hairy Tony's.  It was a good choice with good food and my favorite beer on tap; Bell's Two Hearted Ale.  Abby shared it with me and by the end had developed a taste for the IPA.  

Back at Adam's house, we said goodbye (I wish I thought to take a picture) and headed back home.  We played some Skip-Bo and attempted to finish the movie we started the night before but once again, I was snoozing in no time.  I also had developed a cold over the trip and was bad company with my drippy nose and coughing.

  

Monday morning, we went out for breakfast at a downtown diner. We also stopped at a craft store for some picture frames and returned to mount some photos and other art.  We hung them in all the right places and sat on the couch to admire all the redecorating.  It was time to go home.  My intent was to leave by noon but the lovely, bittersweet couch moment hung on until 12:30.

The ride home to Michigan lead by the GPS and accompanied by Stephen King suspense was uneventful (aside from the suspicious border crossing experiences).  I began to get sleepy by the time I hit Michigan and I kept myself alert by munching organic baby carrots and hard sourdough pretzels.  Mary was happy to see me but I was too sleepy to tell her the whole story of my adventure.  We crawled into bed and I was asleep within minutes.

POSTSCRIPT:

Tuesday morning was a scheduled chemo treatment, postponed from the week before which was also postponed the week before that due to low platelet count.  As usual, they started me off with a blood test and waited for results.  A score of 80 or better and they would treat me.  It was 79 but they decided it was close enough.  I was both happy to receive the cancer-killing drugs and sad that my hiatus was over.  The nausea hit me a little harder this time or maybe it was just the contrast from being chemo free for those extended weeks. I left with the external pump and get it taken off again tomorrow.  I'm actually feeling pretty good today.  No nausea issues.  I accomplished some yard projects and as evidenced above, got my trip diary in writing.  Did you make it this far?

The general outlook

Having the one week postponement of chemo is kind of nice.  I used the extra week to drink a couple of ice cold beers and consume a few ice cream cones. Well, yesterday was to be the make-up infusion and once again, my platelets were too small in number to proceed.  They like a score of 100 (100,000) but will proceed if it is 80 or better.  The two week score was 56 and now the three week measurement was only a small improvement, up to 65. So I have another chemo-free week to look forward to.  It stretches out the total course of 12 cycles well into fall.  My bone marrow needs to get it in gear and start cranking out the platelets.

So what after that?  I asked my doctor (I'll call him Dr. Ken in the future so I don't have too look up the spelling of "Krajewski" again.  If you are reading this in your head, it is pronounced "Cry-you-skee".)  Dr. Ken says that I'm pretty much on chemo for the rest of my life.  There will be some breaks but they will always be about weighing quality of life against fighting potentially active, fast-growing cancer.  We kind of have to guess when the cancer is taking a break so I can take a break too.  Fortunately this current regimen affords me some pretty good quality of life; a week to 10 days of mild inconvenience followed by another 10 days of relatively robust living.  He'll likely keep me on this regimen after the 12weeks as long as the primary bad side effects don't get worse; those effects being Chemotherapy-Induced Peripheral Neuropathy (CIPN) and the platelet level crashing so low as to induce internal bleeding.  The "platinum" class of drugs cause the former and the 5-FU class the latter. The neuropathy has been present since my first course of chemo 2 years ago and it is a little difficult to tell if it is getting worse.  One day feels just like the next.  Fortunately I only feel numbness, not pain.  We may switch from the external pump infusion to the oral (pill) option after the 12 cycles.  We put off the next CT scan until October 28 since I feel strongly that chemo is working.

I also got involved in a ArtPrize project with some out of town artists who needed a little video assistance.  Their large installment at the UICA meant every moment for them devoted to construction so they brought me in to do a little shooting and a little editing for the "Orientation" video that shows to the viewers as they enter the space. Artist Micah Silver and I drove to Toledo last week to record Hollywood Director, Brett Leonard (best known for his 1993 sci-fi film, "The Lawnmower Man".)  This week I worked with Micah's collaborator, Adam Schoenberg, to score the piece and make edit decisions.  It was a fun diversion and it was nice to be plugged into ArtPrize in some small way.

I can see my breath these days in the mornings as I go out to feed the goldfish.  It is a good reminder of being alive against the odds.  Even Dr. Ken remarked that it was unusual for  a stage 4 esophageal cancer patient to be looking and feeling this good after 2 and a half years.  Two years is considered an exceptionally long prognosis.  I'm up there withe the miraculous cases and showing no signs of failing.  It is good to be alive and looking forward to the next natural cycle of life.

Seasonal changes

My habit every morning for the last month has been to prepare bag lunches for the ladies of my house and then make myself a half cup of black coffee with a tiny sprinkle of sugar and head out to feed the fish in the pond.  I sip coffee and stand motionless waiting for the goldfish to notice the food scattered on the surface and come up from their hiding places in the murky water beneath the lily pads to snatch the tidbits.  It usually takes a couple of minutes before I see the first one break the surface and then disappear again.  By the time my coffee is gone, I typically see evidence of one to four lively fishies.  But this past week there has been no activity whatsoever.  I'm not sure if it is the seasonal cold that keeps them in hiding or whether perhaps raccoons have been using the pond as a place to hunt for food.  There is some evidence of four-legged disturbance: floating plants chewed up and dragged on shore and the pot that holds the lily pads in the middle of the pond was knocked over on its side. But I'm still holding out hope for the fish that their cold-blooded bodies are content to process summer feeding in the deepest part of the pond.  An air bubbler will ensure that ice will not cover the entire pond and that I'll discover an active bunch in the spring.  Still I would like to see some evidence that a daily feeding is still required.  I like the ritual and will try to maintain it as long as weather permits.

Another ritual that seems to have morphed is my chemo schedule.  I still come in every two weeks for an infusion but it is now standard that my platelet count is too low for treatment and it is bumped a week.  After the third week it is still low but evidently close enough to the borderline to move forward.  So this drags out the total course of 12 infusions.  I only have two left of the twelve but that will likely take 6 weeks to get through.  I'm confident that it is working and am grateful to have medicine that does what it is supposed to do.  It will be nice to have it be over.  But who knows what will be on the other side?  I have not yet seen my doctor a second time to ask these questions.

In the meantime, September an October will include some travel.  I plan on visiting my daughters in their respective cities.  I will be driving to Ithaca, New York at the end of September for Abby's 21st birthday and Mary and I will fly out to Los Angeles to visit Alice the second week of October. Towards the end of that month we will be heading to Chicago for the wedding of Mary's brother, Guy to his partner, Rich.

We had mentioned to Marlee that after she got a job we would help her get a car.  So now she works for SaladWorks downtown and drives there in a 2003 Ford Focus.  It was a Craig's List gamble and so far it was a bad gamble. We've had to put in over $1000 in repairs and there could be more to come.  I'm reminded of the burden of ownership on a kid (not to mention the parents) and also the sense of freedom that comes with having  car that you do not have to share with anyone.  It is a new era.

I welcome the cooler days and I know the bone-chilling days are soon to follow.  Before you know it, it will be excitement of spring, with the promise of new green and  days of short-sleeved shirts and bare feet.

Kenneth Krajewski & cuisine

Some info about my new, very tall doctor, .  Here is a  2-minute video interview.  I'll have to let the Lacks Center know that they should get me to do their video interviews in the future.  This one is kind of lame.  Seriously, they put him right in front of a window and asked kinda routine, uninspired questions. I do like the fact that he specifically mentions new innovations in my specific cancer.  I'll have my first appointment with him on Tuesday.  Looking forward to it except for the fact that I'll have to come home from my week at Glen Lake after only 3 days.  If my platelet count is high enough I'll get chemo right after the appointment and since I'll have the pump, I'll likely stay in Grand Rapids for the duration.

I also want to report that the smuggled frozen meats from Rob & Joanne's farm have been converted to roast chicken and oxtail stew.  Both delicious!!  My only August regret is that my stomach size is only good for one ear of sweetcorn per meal.  In my mind I could do about 3 or 4 ears.  On the plus side, tomatoes at every meal.

Rosemary-encrusted, organic chicken with caprese salad (featuring my garden tomatoes and basil) and roasted potatoes

Oxtail stew rendered from from a grass-fed, Vashon Island ox's southern end

See! It is August already!

I just got back from 8 days in the Pacific Northwest where I had the opportunity to canoe, camp, and participate in family and Farm life with my brother Rob, and his family (Joanne, Mira and Rose).  I also squeezed in visits with long-time friends- from high school, Steve Klamer and from college, David Suwal and his wife Katie.  We had incredibly beautiful weather: sunny and no rain every day.

I was a  bit nervous about the physical challenge of keeping up when it came to hiking and canoeing but I am pleased to say I managed OK being "off the grid" and eating dry and non-refrigerated foods for 4 days.  It'll drive you a little nuts when you are eating mostly nuts and dried fruit for many meals.  But the scenery of North Cascades National Park made you quickly forget creature comforts.  Very few bugs and lovely, well-maintained campsites made the experience even easier to handle.  After each day of canoeing, my sweet nieces set up the one-man tent for me without prompting. Early bedtimes in wonderful climate left time for napping and reading and listening to wildlife.


 Back on the farm, we had the pleasure of a peach tree in its prime with perfect peaches any time we wanted and we wanted a lot.  There is nothing worse than a disappointing peach and nothing better than a perfect peach.  We also picked blueberries and Rob made a couple of blueberry pies which we augmented with just a taste of Häagen Dazs Vanilla Bean ice cream.  All an important part of a good breakfast.  On Saturday, I also accompanied Rob to the Vashon Island Farmers' Market and helped him sell his veggies at their booth.

The Chicken is still cold in GR

The flights were all smooth and easy with on-time curbside pick-ups from my friends.  The only glitch was that I took off my wristwatch and put it in the x-ray bin before subjecting my self to the metal detector and I somehow neglected to grab it on the other side.  Rob sent a farm-raised, organic frozen chicken and an oxtail home with me.  I packed them wrapped in plastic, stuffed into a pair of jeans and buried deep in my sleeping bag.  I was happy to find them still cold and unmolested by TSA.

Still it is good to be back in Grand Rapids in my own bed with my loving homies, cooking in my own kitchen and tending my own tomato plants and goldfish livestock.  Our awesome new neighbors, the Verkaiks, kept the plants watered during a very dry Grand Rapids week and I was rewarded with the first batch of ripe tomatoes.  A little fresh sweetcorn and I am in heaven!

Busting my bubble was a scheduled chemo this morning.  I had had an extra week off and had kind of forgotten about the whole cancer treatment thing.  My blood test still reflected low platelet counts so they ratcheted down my chemo concentration rather than bump me another week.  I've got all kinds of pretty purple bruises to back up that diagnosis.

Dr. Scott can stop working for a moment

It also happened to be Dr. Scott's last day before retirement.  It felt odd to have him be suddenly just gone after 2 and a half years of life-extending treatments.  It is kind of an intimate relationship to jut disappear without a goodbye.  I expressed this to Linda, my chemo Nurse and she said she would inquire whether he could squeeze in a quick farewell.  The man is so busy, he really does need to retire and his bedside manner has always been a bit awkward.  But he did manage to stop in the chemo lounge and introduce me to my new Hematologist, Kenneth Krajewski. He's younger and even taller than the very tall Dr. Scott. Gonna have to work on pronouncing his name.  Dr. Scott was in such a hurry that there was barely time for a satisfying goodbye.  I owe his work for keeping me in the top 6 percent of survivors for my type and stage of cancer. I guess  I have to write a letter.  I had to grab him by the coattails to pull him back for a quick photo (photo credit, Dr. Ken Krajewski).

Brothers reunite

Gonna go pick some more tomatoes and try for a goldfish sighting.  This will be a week for resting up.

Apparent progress

Preferring to goldfish pond or CT scans?  Well, both really. 

The pond seems to be supporting at least some fish for a reasonable amount of time.  I added ten more a while back and I have only pulled out two dead ones.  There are about 5, distinctive fish that I can tell are getting larger and they regularly play in the bubbler, darting in and out of the bubbles seeming to be having fun.  Algae is now growing and I decided to let it grow because I think plant life is healthy for the environment.  It is harder to see the fish anywhere but in the froth of the bubbler.

I had a CT scan last week Monday.  It was supposed to be the Friday before but I forgot to take one of my pre-meds for allergy to dye contrast and I made the mistake of telling them that.  They rescheduled the procedure but not before I had drunken a bottle of barium and taken a heavy dose of Benedryl that made me foggy for the rest of the day.  But Monday scans went easy and yesterday I got the result: Stable.  No change in size, most importantly, no growth.  The blood tests that accompanied the scan showed the "tumor marker" figures still dropping.  That is very good news.  The liver tumors are producing less and less of the growth pattern that activates the marker.  This is not a surprise to me because I feel a healing in my gut.

I'm back on chemo this week but I'll have an extra week off because I will be heading to Seattle August 2-10.  One more dose at least as soon as I get back.

Speeding summer blues

It's June.  One of the things I hate about June is that it is suddenly July and summer is half over.  I still need to exchange all the long sleeve flannel shirts in my closet for the short sleeve madras shirts hanging in the transitional closet in the basement. Oh, to be able to slow down time and savor the warm months!

I guess I should be leading with the boring, predicable results of the transesophageal echocardiogram (TEE) .  They were negative as expected.  My heart is in good shape and not the source of any stroke.  It was a relatively short and easy procedure.  Mary accompanied me.   I was given Versed, the drug that makes you sleep, or at least forget everything that happened while you were quasi-awake.  I was really a little afraid because I was told I would need to be awake enough to swallow an ultrasound probe.  I remember getting the spray that anesthetizes the throat but the rest, fortunately, is a blank.  They decided to use a pediatric probe because of my messed-up esophageal anatomy and the possibility of some narrow passages.

With WMCAT over and my summer threatening to turn into autumn, I jumped into a couple of seasonal home projects.  Number one was getting the pool open.  That was easily accomplished by hiring a teenager to mop out the winter detritus and a pro to get all the mechanics going with all the proper maintenance tweaks that I otherwise might overlook. It always feels good to have a bubbling pool with clear water instead of a gaping hole littered with 8 months worth of tree debris. The second project was to finally convert that concrete, kidney-shaped, cracked wreck of a potential pond into a similar but functional pond that holds water, goldfish and maybe a turtle or two.  I had attempted this a couple times before in previous using self conceived methods for patching cracks that seemed to make sense to a person who knows nothing about these sorts of things.  This time, after powerwashing I invested in the over-priced pond-certified products that guarantee success; primarily, three coats of fish-safe, rubberized paint.  It looked fantastic!  But would it hold water?  I could barely stand to wait the prescribed curing period.



The good news is that it holds water.  The bad news is that it kills goldfish in relatively short order.  I first tried three grocery store "feeder" goldfish.  They cost 28 cents each but still they represented a life in my hands.  They seemed so happy, exploring every inch of the pond, separating and regrouping in a  mini-school.  I watched them for a couple hours.  After several hours break, I came back to find them all belly up.  It was devastating!  I talked to a friend who has worked in a pet store for 15 years and she offered to test the water.  I brought in a sample and it passed all the tests with flying colors.  We speculated that I might have gotten sick fish or maybe the city water was too fresh and full of chlorine, that now had clearly evaporated.  She picked out 4, extra-healthy-looking and pretty "feeder" goldfish that I would be rescuing from a fate of being fed to pet piranhas. At the same time, Marlee brought home from school two large goldfish from her teacher's pond.  They already had names so there was a bit of extra pressure there to succeed.  This time, I followed a temperature adjusting procedure of floating the bags of water in the pond for 20 minutes.  Once again, it was a joy to see them go from their claustrophobic little containers to the sprawling Ponderosa in my back yard.  My friend Dave Hast was with me to witness.  Four hours later, the little goldfish were dead.  One more hour and the big ones were lying upside-down on the bottom.  All I can figure is that the slotted concrete blocks i had placed in the bottom for raccoon shelter had been impregnated with some kind of poison during their  tenure as lawn tripping hazards.  So my plan is to pump out the water, remove the bricks, rinse out the pond, refill it, add some water plants and try again.  Any fish lovers want to try and stop me?

I also accomplished my goal of getting my 83-year-old dad back on motorized wheels.  We delivered a 50cc scooter to him and after a brief practice ride,  followed him in a car to his local haunts.  It felt like a success.  His balance is still great and he can't get into too much trouble at a maximum of 25mph.

Chemo continues to be a drag on my energy levels but I am grateful that the side effects are minimal. Blood platelet levels continue to drop but not to serious levels yet.  One side-effect of that is that I am subject to bleeding and bruising.  I have some pretty sweet bruises commensurate with my klutziness.  I also have about 8 days where ice-cold food and beverages are somewhat uncomfortable.  I'm seeking out as much cold beer or ice cream as possible for the remaining days before the next infusion.  The nausea is only slight and I still have my glorious locks of hair and robust appetite.