At the beginning of the summer I noted a pattern: I felt OK
the Saturday and Sunday following the treatment and then I would crash through
the floor on Monday spending all day in bed.
Tuesday could be just Ok or fine and then by Wednesday I’d be “back to normal”. So I could enjoy Wednesday and Thursday and
then return for my next treatment.
Thierry complained that the cortisone that they administered
before the chemo drip made me irritable and aggressive, which is a common side
effect and one that only acerbated those traits of my own personality. In other words, it made me even bitchier
than I usually am.
So to see if I could do without the cortisone and perhaps
improve the marital atmosphere in which we have been floundering since (this
summer? the diagnosis? before? ) I requested that they remove the cortisone.
I didn’t notice any effect on my irritability but it certainly did
increase my melancholy because now Saturdays and Sundays, as well as Mondays,
became “down days” leaving me only Wednesdays and Thursdays. At this point, I started to wonder, “what’s the
point?” Where is the quality of life
when I am, in fact, just a slave to the protocol in order to survive?
So we kept going through the motions of our normal
summertime activities, hosting various grandchildren or groups thereof in our
little corner of paradise in the north of France. The little ones probably didn’t detect the
dark undercurrents of either my thoughts or our relationship, which was
becoming more and more frayed. The older
ones had their own preoccupations.
At one point during the summer I had another cystoscopy,
which confirmed that the treatment was pushing back the cancer. One of the lesions had completely disappeared
and the larger one had regressed considerably in size and color and had even a
coating of necrotic tissue on it. This
was an excellent sign. But I was still
scheduled for more treatments, through September and even October. It seemed never-ending.
The week following my last “Freedom Friday” as I refer to my
one in four Fridays where I don’t have to go to the hospital, I noticed that I
had blood in my urine again. Three days
later, the same thing. This time I told
Thierry. Then again. I’d like to be able to say that I remained
totally level-headed and pragmatic saying “Hmm, there’s blood in my urine. I’ll have to mention this to Dr. D when I see
her on Friday.” But that’s not how it
works in my mind. I just go immediately
to that place of fear imagining my bladder full of new tumors or that the
existing one had started to eat through my bladder wall. Thierry had already returned to Bruxelles and
I was on my way in my car when I made a pee stop. Boom!
Bright red blood as well as blood clots, and now I think, “I’m
haemorrhaging!”, and wonder what sort of
invasive treatment I will have to undergo to make it stop and to make the
nagging weeklong pain go away.
We go to the emergency room.
I pee in the cup. The young
urologist asks me why I’m upset and panicking. "It’s really nothing. Maybe only a
bladder infection." They’ll do a culture
and I should call back on Monday. Fortunately I see Dr. D the next day and she
schedules a cystoscopy (Sept. 8) so that we can understand the cause. She explains that it might be the tumor
breaking away and exposing blood vessels and that even small amounts of blood
in the urine can seem impressive. At
last, I can start to calm down.
A bit of calm perhaps, but I can find no place where I can
be protected from the unrelenting stress.
I so desperately need to be free of the constant worrying and wondering
about my own disease, and the harassment of life in general.
Not only has this taken a toll on me but also it has taken a
toll on our marriage, which was not the most stable of affairs as anyone that
knows us well can attest. Like all
marriages there are ups and downs but our ups are mountainous and our downs
abysmal; the ups were fewer and farther between. This adds to the stress and the sense of
despair. Why can’t we just be nice to
each other?
In a brief moment of lucidity, we managed to agree to cancel
my birthday party that I had requested months ago. I thought it would be a great idea to get the
family together to celebrate my 65th. So Thierry had sent out the invitations and
rented a great place at Cap Gris Nez – the point in France from which we can
see England -- and organized some activities and the food. But the will was just not there. We are exhausted. We cancelled and felt relieved. The farce is over, send home the clowns.
From where I am now, I can no longer afford any more
pretending. I only have time for what is
real and genuine and kind. That and
nothing more. I will cull everything and
anyone that doesn’t fit these parameters from my life because there is no room
for anything else.
During this summer, I re-read a book that I picked up in
England during that springtime jaunt with Virginie and Jasmine, “When Breath Becomes
Air, What Makes Life Worth Living in the Face of Death” by Paul Kalanithi. It
is the poignant story of a brilliant neurologist/neuro-surgeon who is diagnosed
with a terminal cancer his last year of residency. These are his words:
Time for me is now double-edged:
every day brings me further from the low of my last relapse but closer to the
next recurrence – and, eventually, death. Perhaps later than I think, but
certainly sooner than I desire. There are, I imagine, two responses to that realisation. The most obvious might be
an impulse to frantic activity: to “live life to its fullest,” to travel, to
dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer,
though, is not only that it limits your time; it also limits your energy,
vastly reducing the amount you can squeeze into a day. It is a tired hare who now races. And even if
I had the energy, I prefer a more tortoiselike approach. I plod, I ponder. Some days, I simply persist.
Although I am currently not in the “last stretch” of the
race by any means, every word of his resonates in me as being true.
As in our case, the author’s marriage was suffering before
he was diagnosed. His wife explains, in
the epilogue,
We joked to our close friends
that the secret to saving a relationship is for one person to become terminally
ill. Conversely, we knew that one trick to managing a terminal illness is to be
deeply in love – to be vulnerable, kind, generous, grateful.
As it said on our wedding invitation, an event occurring
eleven years into our relationship:
Some thought that it was about time,
Some thought that they still had time.
I just hope that now we choose to use our time wisely.
