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One of the hardest parts of me being a human being has been accepting my limitations. From the childhood little boy who protested against bedtime because he wasn’t finished with the story yet; the same little boy who had to eat the liver and onions, (which, even smothered in catsup still tasted like urine); and the same kid who blamed the bike for him falling off of it despite the obvious fact that he was going way too fast down that hill and couldn’t turn fast enough to avoid crashing into the Roman fountain and had to be rescued from the water by astonished nuns to the adult who, with Stage 4 Pancreatic Cancer still stubbornly clings to the fiction that he can still do what he used to do … well, it has been my hubris, my stubborn insistence to – as my pal Steve Linstead put it in a note to me this week – “keep on keepin’ on,” that no doubt amuses God as much as it frustrates me.
“The scans show some new dark spot on your liver … and your marker is up to 1900.” Dr. Robin delivers the news in a clear and compassionate voice. The good news is there is no growth in the pancreas tumor, my lungs are clear and my heart is good. There are some questionable areas near my spine, but nothing active. And my newly found back pain may just be a muscle pull.
It’s the back pain that had San and me worried. For the past two nights I couldn’t sleep and despite taking one of those magical oxy painkillers, I still couldn’t lie on my back. So, at two a.m. I moved to the recliner. At four, to the couch. Which means that San also moved, didn’t sleep, and whereas I worried about what might be causing the pain and what might be done to alleviate it, San worried about all of it. She had done some reading. It could be that the mass on my pancreas was growing again, pressing against a group of nerves, radiating throughout my left side.
But it was not that, apparently.
The Saturday before Easter is not like the night before Christmas. Not is it like the day before a birthday, and certainly it has nothing in common with New Year’s Eve. No.
The Saturday before Easter is a liminal zone – a place “betwixt and between” – Good Friday and Easter Sunday, part of a three-day observance in the Christian faith of the crucifixion and resurrection of Jesus Christ, a time that often corresponds to the Jewish tradition of celebrating Passover. Saturday is remembered, and, among some sects is commemorated, as “Holy Saturday,” the day Jesus lay in his tomb. As such, Holy Saturday is a good day to reflect on what it all means. What does the story of Easter provide us? What does it mean to me?
"Which creature walks on four legs in the morning, two legs in the afternoon,
and three legs in the evening?"
The Riddle of the Sphinx
When you get a cancer diagnosis it is very much like being exposed to a riddle. You want to know the answer but you have to live with the riddle to find it. Maybe the answer is obvious when you finally arrive at it, but getting to it never is. For a really challenging riddle is never solved by logic alone. And cancer is certainly a challenging riddle.
The cool metal Moose arrived in a large shipping box from Florida, a gift from our pal Harvey. He and I had visited an art shop in St. Petersburg last December – back when I was in remission – and the one they had at that time was too large to justify a purchase. Where would we put it? But Harvey knew how much I admired it and true to his Harvey-spirit, he returned to the shop later to inquire about a smaller version. Hence, the cool metal Moose that now adorns our living room, hopeful green eyes always on me, a smile on his lips and no doubt a little mischief in his heart.
Receiving this gift was an unexpected pleasure. It brightened an otherwise ordinary week, a week complete with a second round of chemo in the second cycle of a prescribed treatment designed to lower my CA-19/9 marker, and the predictable resulting steroid-generated 24-hour high that then quickly descends into a two-day “mild flu” with backaches and a pervasive accompanying tiredness, a tiredness that this morning as I write this blog I am still partially suffering from.
But just looking over the table beyond my chair to that happy metal Moose puts a smile on my chemo face, reminds me of Harvey and the good times we’ve shared, offers the hope there will be more of them, and pulls me out of the doldrums.
It was not so hard believing in the end
as long as it remained abstraction,
shadow the wind dragged through
waist-high grass, a passage like the wave
some philosophers say our lives are,
a body stirred from nothing
to brief crescendo, then dropped
into nothing once more. Each one of us
will take our turn crossing that field,
far from the lights of cities, nameless
under nameless stars. Alone
in that emptiness, the small gears
of civilization dither and lock,
and the older, larger gears, the ones
ever-turning and ever-silent, let themselves
be heard for a moment, long enough
to let us know the shadow
on the edge of the field is no mirage.
But we are not the wind. We have
a choice which direction we take.
--From Al Maginnes, “The Edge of the Field”
I was asked by our friend and my newest ASU colleague, Dr. Kathy Miller, to discuss “cancer and the family” in her graduate seminar last Monday night. I was happy to do it. Her students have been reading my blog and their questions were informed and polite, plus I had the advantage of having talked through some of what I might say with San, who gave me the theme I ended up using: “That when you receive a cancer diagnosis everything changes and, at the same time, life goes on.”
“To do is to be” – Nietzsche
“To be is to do” – Kant
“Do be do be do” - Sinatra
This week is my “off week” from chemo treatments, but it has not been that sweet little bit of respite I had hoped for. Eight days ago I exited the Four Winds Cancer Clinic and expected a little tiredness for a couple, maybe three days, followed by a gradual upswing in my energy level and general overall “feeling.” In fact, I have not had either of those positive outcomes until yesterday. In between I have learned that the new chemo drug negatively impacts both white blood cells and platelets, the result of which is like having a mild flu, complete with bodily aches and a deep tiredness, accompanied by a small daily fever. Mine comes at 4 p.m., regular as clockwork, or did until yesterday when thankfully there was no fever at all. Nor is there one today. Hurrah!
So I am on my third round of the “lightweight maintenance chemo” and so far, so good. There is some tiredness but no chemo brain and although I know I have been poisoned – hard to describe, as it is more of existential mood that invades the body (more on this below) than it is physical suffering – I manage to keep a positive spirit and do pretty much everything I want to do. Part of that is finding ways to help others, offering and receiving comfort food, and – here’s the news – creating a space for others to help too.
On the basic side of the “helping others” formula for living I’m pretty much doing what I like to do: I am teaching two classes, finished a new article on the future of higher education, and last night I made chicken Tikka Masala for the family. Due to the neuropathy in my fingers I have to be very careful around knives and there is some clumsiness associated with the lack of feeling in my fingertips and feet, but as long as I can do simple daily tasks and still take some joy from being of service to others as a teacher, a scholar, a friend, and a family member, I’m good.
But we can do better. I can do better.
“dance the last atom cutting a knot
just dance and dance until you cannot”
Yesterday we arrived at Four Winds Cancer Clinic a little later than usual but just in time to hear that our pal Gabbee Padula Bagby was undergoing her final chemo treatment and would be the happy recipient of “The Happy Dance.” Hurrah! Gabbee had 60 treatments for breast cancer but is now cancer free and returned to normal life with her wonderful husband and their two lovely children. We couldn’t be happier for all of them!
Returned to the Four Winds Cancer Clinic yesterday to begin “lightweight maintenance chemo.” I didn’t sleep well the night before, my blood pressure was elevated, and I was strangely a little nervous. But once again the lovely and caring people who we are all so fortunate to have working there cheered me up, checked me out, made sure San and I were comfortable, pronounced me “looking good” (always makes me smile) and plugged me in. The whole procedure took about an hour – way better than the seven hours or so I used to do – and so far there have been no negative side effects. I slept soundly last night and feel good today.
Here’s the thing: Chemo is a four-letter profanity masked as a five-letter friend. No one likes it, not in the Clinic or on Facebook. We fear it. We tolerate it because it promises a longer life and in most cases that I’ve witnessed a longer quality of life. But to achieve that desired result requires opening your veins to a poison regime that seizes control of your body and mind, unleashes an army of silent killers inside of you, and sometimes can be very unpleasant afterward, for you and for those around you, for days at time. And, with a cancer such as mine, in the end you die. Those are the facts.