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.

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:

 

 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?