Wednesday, November 19, 2014

Who cut the cheese?

Not me.  But I did attempt it.

When I was a kid, maybe 8-10 years old, I had a folding pocketknife and a block of balsa wood and I was very excited about transforming the wood into some sort of a creative figure.  It was not long before I sliced into the base of my left index finger and was required to get 4 stitches.  When the bandage finally came off I was as shocked to see those 4 thread loops attached to my flesh as I might have been while looking at Frankenstein’s monster’s brain transplant scar.  It felt like a really big deal.  I remember getting them clipped off too and being surprised at how low-impact that procedure was.  That scar, its sensitivity, and the visible needle-hole scars were show-n-tell material and also key toward my learning “left” and “right”.  I just had to remember scar = left and I could sense my left hand without looking.

Another thing I remember about that experience was my dad telling me how now that I had cut myself pretty good, I would forever come to respect sharp blades and could be trusted to not cut myself that way again.  It did work for a while but as of yesterday, I now have a total of 4 scars on my left hand, three of them from knives.

Back to the cheese.  I had just returned from some white-knuckle freeway snow driving which gave me plenty of time to think up what I would be cooking for dinner: Macaroni and cheese with broccoli.  We were all pretty hungry and so I engaged my special skill in high speed, multi-tasking cooking.  The water was on the boil seconds after I arrived in the kitchen and this bought me time to do the prep for the cheese sauce. The roux was bubbling shortly after on the second burner. I like a multi-cheese, cheese sauce and I had already imagined the 3 cheeses that would be going into this one.  The sharp cheddar was easy. Cheddar is a crowd pleaser that shreds easily in our hand-cranked cheese shredder. I soon had a generous mound.  The dried pasta went into the now boiling water. 

The second cheese would be this delicious French cheese that had started off as a large soft wedge and now was a smaller, hardened wedge; not so appealing any more for crackers but I knew it would melt nicely in a sauce.  Feeling the magic happening, I grabbed a bottle of IPA that was beckoning, mere inches from the cheese drawer and popped the top and took one swallow.  I figured I’d drink half with dinner and save the other half for later when the stomachache from over-eating had passed.

I was thinking about the third cheese, which would be just a dash of a stinky cheese, a Stilton, for a little contrast.  I picked up the French wedge and realized I’d need to trim it a bit to fit in the rotary grater.  By shaving off some of the hard corners, it should just fit.  I grabbed a small kitchen knife that had been lying on the counter since this morning when I had sharpened it and then cut up an apple into eighths for time-lapse snacking.  As I brandished it against the cheese, all of a sudden I felt a zing in my thumb and had the now familiar “oops” sensation that is frequently accompanied by the, “Can we roll back time for just a minute” fantasy.  A glance confirmed that it was pretty deep.  I wrapped a paper towel around my thumb and held pressure on it with my grip.

I called for Mary but she had already heard the shouted expletive and was on her way.  I informed her that I might need stitches but in the mean time, could she hunt down a few Bandaids.  My pasta water, meanwhile, was ready for the broccoli and the white sauce was ready for the cheese.  Part of my speed cooking for this recipe is cooking the greens with the pasta.  I sliced the broccoli florets right into the water as if I was whittling a stick.  Mary came back with a couple of bandages but took one look at the blood-saturated paper towel and decided this dike leak needed a bigger thumb, so to speak.  I had her grate the French cheese in the rotary grater while I pounded the rest of the bottle of beer.  I figured that would be about my stomach capacity and the Mac-n-cheese could be warmed up later.

I strained and stirred together the pasta/broccoli mixture with the cheese sauce and called Marlee for dinner.  Meanwhile, Mary asked Siri about the closest Urgent Care facility.  Siri suggested that the closest one was on Leonard Street near the East Beltline.  We had not heard of that one but Siri was willing to dial the number to find out how busy they were. Despite the snowstorm, they were pretty slow.  So Mary pulled on her boots while I located some gauze sponges to rewrap my thumb.

We arrived to find no line and a nurse came right out to assess the damage.  He ascertained that it was probably worth a few stitches and so we filled out paperwork while they prepared an examination room.  One of the questions was, “Do you have any concerns about your injury affecting your critical day-to-day activities?”  Mary suggested that hitchhiking might be affected so we put that one down.

I was feeling pretty happy from my hastily consumed 7.5% alcohol brew on an empty stomach. And you can kind of see that in this picture.
 
A wonderful Physicians Assistant named Lara came in and made conversation with Mary and I while her assistants readied for the procedure. P.A.s are the best.  They always seem to be good communicators with great skills to back them up.  The first step was to numb my entire thumb.  She did not want me cringing and pulling away while she sutured.  She informed me that this numbing procedure was the worst part and that it would hurt a lot.  Yeah, it hurt; three deep pokes with a burn.  But her prep warning made me expect and prepare for the worst, but it was all tolerable in the big scheme.  I did not feel a thing while she was sewing.  We think she used 4 stitches but I wasn't about to watch.

No shoveling snow or dishwashing for a week…  well that is a big pain in the butt.  But the good news is that the warmed up Mac-n-cheese + broccoli was delicious; maybe my best batch ever.  And actually, this bandaged thumb may work out great for hitchhiking.


Tuesday, November 11, 2014

Still riding the horse I came in on

I did end up having chemo last week despite the fact the platelets were a hair below the treatment margin. After a month, my body had kind of forgotten what that chemotherapy feels like.  Nausea was light but definitely a factor.  I was glad it was bumped that extra week because the weekend before, we got to enjoy a family wedding.  Mary's brother Guy got married in Chicago to his partner Rich and Mary's whole (large) family was there along with a bunch of cool people I had never met before.  So I got to eat, drink and be merry in good health at his wonderful celebration.  Here is a video of a "flash mob" that Mary organized as a surprise at the reception.  All the guests had been sent a link to a training video to learn the choreography in advance.  We had no idea how many would participate but it looked like about 80% to me.  I call that a smashing success!

One awkward thing about the timing abot the chemo was that I also had a CT scan scheduled in between putting the pump on and taking it off.  That meant that the pump would stay with me in the scanner and instead of getting the contrast activator through my port, I had to get an I.V. hole poked in my arm.  That may not seem to be a big deal and that, indeed, is what I kept telling myself.  My chemo nurse, Linda, said that the nurses at the CT were very good and I should have no problem.  I wish she had not said that out loud.  Even though there was no one in the waiting room when I arrived, it took an hour before I was called.  Apparently one of the machines was down and they were sharing a CT scanner with ER.

They make you drink a second bottle of barium when you get there and while I sipped, I also sized up the nurse.  I had not seen this one before and had a bad feeling about her seemed lethargy and her inconsistency from the usual protocol.  I have done this enough times that it stands out when they don't offer you a straw or ask about premeds, etc.

A confident, energetic nurse entered and called up a woman who came into the inner waiting room after me.  That woman had a port and this was a port access specialized nurse.  The slow-moving nurse finally called me into the IV placement room and asked me about arm preference.  I gave her my left arm and after thudding her fingers on a few veins, she selected my right arm instead.  It took her 4 tries, each one hurting me enough to where I was vocalizing "ouch!"  I have some bruising to remember her by.  But the scans were routine and the premeds had done their work and I had no reaction to the contrast dye.

That was last week. Today was my day to meet with Dr. Krajewski and go over the results of these scans.  Mary came with me.   Dr. K is more on time than Dr. Scott ever was and the results of my scans were as I expected.  No dramatic changes.  All the liver lesions were exactly the same size as the last scan; no growth.  There were some new tiny, unmeasurable bumps or "nodularities" around the colon, specifically near my appendix but nothing to be concerned about.

He scheduled my next appointment for 6 weeks which is two days before Christmas.  Next chemo is scheduled for the week of Thanksgiving but I would not be surprised if that gets bumped a week.  I'm kind of hoping that happens because otherwise I will be having my pump removed on Thanksgiving morning.  Really?  They have people working Thanksgiving morning?

My obsession with food is still raging.  A few days ago, I happened to see a commercial for a new kind of pizza at Little Caesars.  It is basically a pretzel crust pizza with a gooey cheese-like substance in place of the tomato sauce that sounds absolutely horrible. But it was a new thing and I could not get it out of my head. I was dying to know what it tasted like for some reason that I can't explain.  Mary finally urged me to blow the whole 6 bucks it costs to scratch that itch.  I'm ashamed to say I kind of liked it but am happy to say that I never have to eat it again.  I still have a few slices in my fridge if anyone has the same urges as me.





Thursday, October 30, 2014

Chemo Purgatory

It has been almost a month since I've had chemotherapy administered.  Dr. K had changed the order so that I'd get it every three weeks rather than every other week because the platelet cells needed time to regenerate.  But at three weeks the platelet count was too low and at four weeks it was lower still.  Next Tuesday will be five weeks and we will try it again.

Don't get me wrong, there is something kind of nice about having a month off from treatments but it is not so fun to anticipate going to the Cancer Center and then to actually go and get punctured and hooked up, only to discover that I have to delay treatment and bump all my appointments another week.  My CT scan was also bumped to next week.  So unless the platelets are still too low on Tuesday, November 4, I'll receive a dose and get hooked up to the external pump. Then on Wednesday morning I'll go in for a scan.  Thursday, I'll get the pump taken off.  And then the following Tuesday, November 11, I'll see Dr. Krajewski to read the results and find out the degree of success that this regimen has afforded me.

I don't know what the doctor will say but I'm beginning to think that I have reached the limit of this particular combination of drugs. My bone marrow has taken a beating.  The side effects determine what my body can handle.  If the scan shows that the tumor is still on the move they'll probably try something else.  This would be disappointing as I feel this particular prescription has been both effective and relatively low on miserable side effects.  The next thing could be either ineffective and/or could make me  feel worse.  What are the chances that they can find something that both works to kill this cancer and also has minimal side effects?  The best I can hope for is that the tumors on my liver have been arrested and perhaps they will give me another interim before a new treatment.

In the meantime, I'm grateful that I feel pretty damn good.  I'm balancing that against renewed thoughts about mortality.  Death can come to any one at any time and I am hyper aware of that happening all around me, both expected and unexpected.

Thursday, October 16, 2014

West Coast adventure

As part of my bi-coastal plan to visit two daughters in one season, Mary and I set out for a long weekend in California to hang out with Alice.  Marlee was a real trooper to drive us to the airport at 4:30am last Thursday, especially since she was being left home alone.  But I'm thinking that for a 17 year old, having the house without parents for five days could be a positive experience too.

Our flight had a very short layover in Chicago and the connection landed at LAX ahead of schedule.  Alice was stuck in traffic but arrived withing 20 minutes.  It was still morning in California so we decided to meet her boyfriend, Zack for breakfast at a place in the neighborhood where we would be staying.  Alice had her dog, Harvey with her so we chose sidewalk seating at Millies Cafe. Wonderful food and friendly service with great coffee; we were off to a great start.

Since we arrived on a Thursday, we were intersecting with Alice's work week and she recommended that rather than staying at a hotel, we try Airbnb; an Internet service where people share a room in their home like a Bed &Breakfast.  This way we could have an interesting place exactly located in a good, walkable neighborhood near both Alice and Zack.  We chose Sunset Junction with a second floor room with s huge private  balcony.  Check in time wasn't until 3:00pm so we asked our host, Chris, if it would be alright to leave our bags there while we explored the neighborhood.  He graciously let us check in early and gave us a tour of the house and a set of keys.

By this time it was noonish and the day was warming up.  Alice had suggested that we check out this cool, restored theater in the neighborhood called The Vista which had matinee showings of first run movies.  When we arrived, it was just in time to see "Gone Girl", which was a long movie that would take us up to our check in time.  The Theater was beautiful with comfortable seats and great leg room.  It was nice to just chill after our flight.

We walked back to our room afterwards, had something to eat and napped before our first Alice-planned activity: a comedy show in the back of a comic book store that featured young comedians including Zack and several of their friends.  We had a blast but it had been a long day with the time change and by midnight, we were getting pretty droopy.

After a great night's sleep, we went back to Millies for breakfast on our own and spent Friday exploring the neighborhood of Silver Lake.  We were quite excited about the planned, uniquely LA experience of attending the broadcast taping of Mulaney, a new Fox sitcom that features Zack as character called Andre.  We took a Lyft car (more on that later) to Alice's work where we met her wonderful boss, Barbara,at the casting agency.  It is clear that Alice is loved and appreciated there and I felt great pride that she had landed so well.
That's Zack as Andre with the orange hat
AT the TV studio, we were on the VIP list, which meant we had a draped off room in the studio with monitors showing all the video takes and a free buffet of food and drink.  It was a long night but a fun one.  We met a lot of Alice & Zack's friends, some of the actors, and had the run of the studio with our special yellow wrist bands.  Mary and I snuck into the studio audience for an hour where they record a laugh track for the show.  And there was plenty to laugh about.  The writing was very funny and the performances were hilarious.  The food was good and we watched several scenes up close, especially the ones that involved actor Martin Short, whose scenes as a game show host were shot right next to the VIP room.  Alice took us home after all of Zack's scenes were in the can.

Saturday we  had Alice for the whole day and we started by checking out of the Airbnb and "Lyfting" over to Zack's house where we got to know Harvey the dog.  He loves Alice and was suspicious of us out of town strangers.  But he has great charm and we played fetch and watched all his tricks.  We launched from there in Zack's electric car and ended up at the Museum of Jurassic Technology.  This place defies explanation.  The exhibits are not well interpreted and contain many bizarre artifacts by misguided but interesting people.  Mary loved it.  I was a bit frustrated by the dark and confusion.  From there we went to Alice's apartment where we would stay for the remaining two nights.  Alice and Zack went back to Zack's place to organize a bonfire gathering in the evening while Mary and I napped.  It was so cozy that we considered skipping the bonfire but ultimately we relented and took a Lyft to the party where we met lots of new friends and some of the old ones while eating s'mores and drinking margaritas. We "Lyfted" back to Alice's apartment after midnight.

Lyft was an amazing new paradigm for me.  We had looked into renting a car while in LA when Alice suggested using ride sharing apps instead. It turned out to be a huge savings and great convenience; no buying gas, no parking hassles, no uncomfortable conversation with rental car employees about insurance.  After putting in our destination address, the application on our phones automatically detected our location and the location of a nearby driver, along with the driver's name, photo, and color, make &model of the car.  It told us how much the ride would cost and how soon the driver would be there. The longest wait we had was four minutes.  Every ride we purchased was in a clean car with a very friendly driver.  Often they would offer us candy or bottled water.  Every ride (except the final one to the airport) was under $10.  And the app takes care of the payment.  You simply get in the car when it arrives and get out when it reaches your destination.  You can add a tip through the phone app after your ride.  So easy and so cheap, compared to renting a car in the big city.  Of course we had Alice and Zack drive us around for our longer adventures.

Sunday was our last day to squeeze in everything else with Alice.  We met her after morning coffee and scones at a local coffee shop. We planned to hit Alice's favorite Los Angeles spots: The Farmers Market, the Flea Market and the Dog Park.  Mary had a compulsion to see the sea so we added a beach visit to the itinerary and forwent the Dog Park.
Farmers Market

I love looking at old stuff
Santa Monica Beach Couple


Alice does her weekly shopping for fresh produce at the Sunday Farmers Market.  It was great to look at, smell and taste all the offerings.  There were lots of folks offering free samples.  We swung back to her apartment afterward for Alice to drop off her groceries and for me to change into shorts; something you will rarely see in Michigan... my legs.  Mary tells me you are not supposed to wear socks with shorts but I like the comfort.

We kept encountering an AIDS Walk in progress on our way to the Flea Market and had to continuously change our route to circle around the thousands of walkers.  When we finally got there, the sun was out in full and I was glad I had shorts.  And now I have an October suntan.  Lots of cool stuff to look at.  I generally do not buy things except when I have to but both Alice and Mary do not share this quirk.  They found stuff too cool not to buy.

It was a longish drive to Santa Monica Beach and we settled for a shady view of the beach rather than than risk getting sunburned and sand in my socks.

When we had had enough of napping under a shady tree, we B-lined back to the car to make it back in time for the evening portion of our Sunday.

We scooped up Zack and his car  at his place and headed out to their favorite sushi place.  When we got there it was packed with a 45 minute wait for a table.  Fortunately there was a bar across the street with happy hour drink specials that made the interim zip by.  The sushi dinner was worth waiting for.  Everything was delicious.  I wish I had a picture.

Afterward, we went back to Zack's to participate in a new Sunday ritual: watching "Mulaney" at 9:30 with a bunch of friends.  It was a very funny episode (The Doula) made more enjoyable with the company of rabid supporters cheering all of Zack's appearances.

After the credits, Mary and I bowed out since we had an early flight Monday morning.  We took a Lyft ride back to Alice's Apartment and set our alarms for 4:45am.

We were a bit worried that there may not be Lyft drivers so early in the morning but we were pleasantly surprised to get one one in just one minute.  This longer ride cost $35 but Alice estimated that a cab would be about $100.  Our flight back was smooth with great connections and Marlee was there waiting for us in her new car when we arrived at the Gerald R Ford International Airport.

video
So that's our trip in a nutshell for those one or two who were interested.  SO for getting this far, let me share a reward that I received the next morning when I went out to feed the fish.  I was not completely sure that any of the goldfish had even survived.  If it doesn't play above, try HERE

Wednesday, October 1, 2014

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:

video 

 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?









Wednesday, September 24, 2014

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.

Wednesday, September 17, 2014

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.