Today's Normal

I've been thinking a lot lately about what "normal" used to be in our lives, and how it compares to today's normal.

To say something I've said before: Fergus' treatment was relatively straightforward and free of "complications" (as they are euphemistically called). And the worst part of the last 11 months (off treatment) has been the paranoia and neuroses that sometimes creep in to life. All in all, though, this has been relatively smooth sailing. Today's normal is certainly not the same as pre-leukemia normal, but we've done okay. And we are grateful that the last 11 months have been "event-free" (to use another cancer-world euphemism).

I was touched recently by a Listserv posting by a mother whose son finished treatment for Neuroblastoma several years ago. You can tell their road has been hard, even post-treatment, but there is grace in their approach to life now, and I am grateful for their example. At the same time, it's telling that nearly a decade after her son finished treatment, she turns to other cancer families to partake of "the aftertaste of treatment." It's a reminder of the war-like nature of cancer treatment; when it's over, we all gather at the VFW hall for a cheap drink and a smoke. And commiserate with the ones who understand.

I'll quote Mary Beth's post in its entirety (with her permission):

To: PED-ONC-SURVIVORS@LISTSERV.ACOR.ORG
Sent: Thu, 5 Jun 2008 7:12 am
Subject: Re: [PED-ONC-SURV] Life after treatment ??

Good Morning Fran,

I also wanted to share my congrats because it is
such a miracle to get to that point one is "off
treatment." My son is a neuroblastoma survivor and
we had so many side effect issues once he was off
treatment, that treatment simply adjusted to those
things. It took two years before those symptoms
subsided. Or maybe I should say "settled out." We
have lasting effects. He has mod-to-severe hearing
loss, he has only one kidney, he still only eats a
very bland diet. He experiences horrible migraine
clusters. That is the way it is - our normal. Off
treatment for us was eight years ago. Josh's body
has changed, has matured, and the chemo shows its
effects. He's entered puberty early. New thyroid
concerns have revealed themselves. His hearing loss
has become active again and he is losing slightly
more hearing. These types of side effects are both
a trumpet and a whisper to me. They are issues that
seem unfair to a sweet boy who already has endured
so much. And he is mature enough to be angry,
depressed, frustrated with it all. He is a young
boy trying to make sense of all that is happening to
him. And the emotions sometimes become intense.
But.....it is all a whisper to the sweet melody of
living with him. Back in treatment, our onc told us
not to worry about side effects as one has to be
alive to have them. And we are gifted this
incredible miracle of still having Josh with us. He
is a light in this world who has some incredible
living to do. And he does it, with the wisdom that
seems to be of someone 80. His spirituality, his
maturity, his sensitivity, his idealism is
mesmerizing. He inspires adults that we know who
battle their own medical issues, and roots them on
saying "If I can do it, so can you!" Life is
sharper after treatment, more intense, more
brilliant. We treasure it all: the blues of the
sky, the butterflys, the fireflies, the soccer games
the time on the beach with friends. Cancer took
with it the worries/concerns/anxiety of normal life
with it. It has left us with a strong connection to
what living is really all about. For better or for
worse. The aches of treatment for me haven't
disappeared, but they are packed away and only
resurrect once in awhile. But they are softened by
the wonder of today and what the day's glory will
bring.

It is lists such as this one that I find the added
peace of being with those who understand. My
friends and family are a wonderful support, but for
them so much of this is behind them. It is this
group that understands the aftertaste of treatment.

Wishing your granddaughter and your family healing
for all you have endured, and good health for many
years to come.

Mary Beth
Mother of Josh, 1/99 dx NBIII, 8/99 NED to present!