Given that I am a lucky 14-month survivor - which, believe me, we count as a major blessing - time and pain are constant sources of ambiguity around the corners of every conversation we have about making plans for the future, even when that future is tomorrow or next week or next month.
Let’s agree without getting whiny or weepy about it: Fourteen months of using every medical tool to fight pancreatic cancer is a long time and it has been a hard fight that we know one day we will lose. Learning how to balance the fear with the fight is as real to me as fresh hot coffee first thing in the morning. And there is a good reason for attaining this balance. As my pal Richard has explained it to me, learning to embrace my fear is a good thing because it puts the “fight and fear of losing the fight” into a more balanced and therefore useful perspective. Richard writes it this way in an email: “better be afraid my friend, than slack off and lose.”
Fear of losing keeps you in the fight, looking for an opening, moving out of danger when you see it coming, rope-a-dope in the hope our enemy punches himself out, and it reminds me of all of that hand-to-hand combat manly stuff so familiar to Richard but mostly alien to me. My tools are made out of words, my stories are made out of what my autoethnographic self makes out of the meaning of our journey. But I do learn something valuable from what Richard teaches me about fear, or maybe I’m just reminded, that fear can be a good thing in a fight for your life, as it does prevent me from giving up or giving in. I don’t want to die. Not yet. And I’ll fight like the man I am right up to the end.
So no, my dear friends (this upcoming line made Carolyn Ellis chuckle), I’m not yet “circling the drain.” I was just afraid. But the words I heard from Dr. Robin helped me see that - again, against all odds - I was doing much better than I had feared. We were still good for the longer fight.
Time and pain are two strands of my ongoing narrative. I’m pretty sure I know, unlike Forrest Gump with his box o’ chocolates, “what [I’m] gonna get,” which will be the one chocolate left for last at the back corner of the Godiva box, otherwise known as “how my story ends.” But I’m not there yet.
And neither are you. Fifteen months is on our immediate horizon (August) and sixteen months (September) cannot be far behind. I am reaching out for September because on September 1st our SEC-loving football family can watch ‘Bama against Michigan, and the following week I turn 60 on September 8th.
These are short-term goals, but they are also a reminder that accomplishing them requires continued due diligence on both my narrative and the meds, for I need both of them to work for me as I continue the good fight each and every day. Even then, there are no guarantees. Not for any of us.
Example: Only this week it was 17 months and the Great Whoosh came for a true American hero, Sally Ride, who also died from pancreatic cancer. News like that - even though I know every cancer is different and there is no way to know for sure how long anyone has left - nevertheless tends to dwell in my head like an unwanted guest.
I think I know something of Sally Ride’s journey, and, because we shared the same cancer, something of her pain. In my head I counter the negative energy of learning about her death and that 17-month timeline by putting a twist into a popular song: “And when the pain comes … (I’m hearing “When the rain comes” from “Paperback Writer”) I run and hide my head.”
But the good news was I don’t have to hide my head. The scans from my neck to my hips showed only what I hope for the Middle East - “stability throughout the region.”
As Dr. Robin told us with her characteristic kind smile and in no uncertain terms, “I couldn’t be more pleased” with these results:
- No new growth on the “existing but dormant” tumor on my pancreas and the smaller spots on my liver;
- No sign of any spread of the cancer throughout my chest and abdomen;
- No evidence of any activity (other than shrinkage) on the targeted tumor pressing against the nerve sack along my spine - a long way of saying that the radiation therapy worked;
- No advance of the disease to my lungs or lymph nodes (a very good sign), nor any negatives from my blood/lab work. My organs are still functioning normally, including my kidneys (also very important). There is some minor evidence of plaque along some of my veins/arteries, but nothing to worry about as “we all have that.” And my heart is still beating strong and regular.
All good. All good. All good! Amen! Amen!! Amen!!!
The pain issues are now what we are focusing on. Ridding my body of as much pain as possible means a return to a quality of life that, while not what it was when I was in “remission,” at least allows for more mobility and a little R&R outside of the house. Also, the pain I’m experiencing now is related to (1) the residual effects of radiation, as it is still fighting off the cancer in my back and near my spine, and those effects won’t last much longer; (2) the continuing effects of the hairline fracture on T8, and that fracture should heal over the next month or so; (3) the timing of my meds; and (4) the associated body ache miseries associated with my age (oh well) and spending so much time in my recliner.
To address these concerns we agreed to modify the meds schedule so that I slowly rid my blood of the steroid and the Gabapentin in favor of a slightly higher dose of long-term Oxy and the reintroduction of good ol’ Advil to my regimen of helpful pills. I also will walk a bit more, sit a bit less, continue to take comfort from good books and movies, and combat the Blue Meanies (see below), always with a little help from our friends.
That said there is something else I need to say. If I scared any of you with my last post, forgive me for that was not my intent. Please know that I was only fulfilling my promise to you early on to “tell what it is like to live this way” with cancer. And it’s not always going to be a pretty tell.
Some days I am visited by not just abdominal and back pain but by what Beatles’ called the “Blue Meanies,” or music-hating clowns who represent bad things happening to good people in the world. When visited by these cancer-bearing goons, the uncertainties I have about life give into fears of death and dying, and when that happens it’s like a sledgehammer crashing into my brain and through my protective narrative threshold.
Writing about those fears is also part of my therapy. I know I can’t control the disease just by writing about my fight against the Blue Meanies, but I write about them to control my fears about the disease, to gain a narrative grip strong enough to get me back “up” again. And hence, maybe that is why I am now often hearing the lyrics of songs or snippets of poetry or lines from old movies playing in my head.
Never underestimate the power of fear to feed anxieties about cancer (or, I imagine, any chronic disease). But also never discount what you and I have to combat it. Which is to say never discount the power of the human voice, the touch of a human hand, and the love in a human heart to lessen the anxieties. And with that lessening of the anxieties, a lessening also of the deeper fears that drive them - a loss of time, a loss of self, a loss of relationships with those we love, and a loss, ultimately, of life itself.
I cannot tell you how our talking with Dr. Robin yesterday changed the fear narrative that had darkened our door since the pain kicked me in the guts at 3 a.m. earlier in the week, a pain that also cut like a sharp knife into those same guts every afternoon. By talking about it, by seeing the pain in relation to what else was going on in my body and what steps we might take to lessen its severity, we created a new plan.
So it happened in that small examining room with San holding my hand that the fearful theme we came into the clinic with - “he feels for the first time like he is dying” - was spoken out loud. And it was in that same room not minutes later, enabled by honest talk, the human touch, and real data drawn from tests on a body that somehow refuses to die, that our fearful theme of impending death was transformed once again into a renewed life.
I haven’t felt such a heavy weight lifted from us since last November, when, for a brief but happy time we were in “remission,” complete with quotation marks, because in Stage IV any “remission” is only temporary.
You know what? I’ll take it. So will San and Nic. Because “temporary” is all we get in this life. That’s all we yet know of the plan, Stan: We are stardust, we are golden …
We left the Four Winds Cancer Clinic but not before hugging our oncology team and sharing with them our good results. We didn’t get a Happy Dance but we didn’t need one, either. With this team we are already dancing.
We are not complacent. But neither are we narratively trapped in a temporal unreality composed in fear and irrationally bounded by our own escalating anxieties. One day at a time we tamp it down. One day at a time we deploy our strong counter-narrative that begins and ends in gratitude and prayer.
This doesn’t mean we have entered some kind of mindless blissful state where, as Forrest Gump’s Mom puts it: “Stupid is as stupid does.” We still have the necessary everyday concerns about how my 59-almost-60 year old body handles aggressive chemo, TrueBeam targeted radiation, and a box o’ meds to rival Forrest Gump’s box o’ chocolates. “You never know what you're gonna get" is true enough, but it is only one “true enough” truth and there are so many larger truths yet to learn.
I may not know exactly what I’m going to get, but least I know some of the story I’m likely to perform. Some day in the future as I lay dying (had to get Faulkner in - another voice in my head) my physical body will be all that is left that other people see of Dr. Bud. But there is a bigger mystery about my energy being reborn, not so much about getting back up again as about being dispersed across the universe, about an awaking of a new consciousness on the other side of this ending that I will become part of, and that will be whatever it is. As Eric Eisenberg pointed out to me in an email this week:
Seen on a cosmic scale, the pattern becomes clear—birth, death, birth, death, birth death—not just of people but of every carbon-based creature on the planet. Vertical, horizontal, vertical, vertical, horizontal. Set ‘em up, knock ‘em down. The rhythm of life on earth.
In yoga they teach that the self is a swinging door, breathe in and it’s you, breathe out and it’s everything else. Then in again. And so on and so forth.
Consider a whirlpool in a river, or a wave in the ocean, both there and not there. Form persists, but the water always changes, energy flowing through form.
The mystery of human life is that while all this is undeniably true, what is also true is that incredibly the current that flows through each of us has eyes and ears and touch, and senses kindred currents in all other living creatures. Mystery loves company.
“Mystery loves company.” Truly a profound statement. I already knew from the B-movie sage Buckaroo Bonzai, that “no matter where we go, there we are.” But Eric’s profound insight is no B-movie. It is pure poetry for where this story is headed. Mystery loves company … and so we will never be alone.
The Great Whoosh will swoop into the room and one swift last breath later my body will no longer be of concern. The pain will be gone. And - this bit makes me smile - I won’t care. Why would I? I won’t need it anymore.
My body will be cremated and my ashes will be scattered into the air and sea at Grayton Beach State Park in Florida, at the exact heavenly place on our intergalactic map, an intersection both real and imagined, where San and I fell in love and together changed forever our lives.
There will be music and dancing, stories and laughter and love enough for all of you, after that fact. But not just yet.
And for the “not just yet” part of our ongoing storyline, only this: Mystery loves company.
You know what I mean? Of course you do.