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.