August 9, 2014 – etched in our memory
banks forever. The day that set our lives
down new paths – paths of unknowns – paths of fear – paths of change.
We have since discovered that many
cancers are found during trips to emergency rooms for other ailments. In that regard, we are similar to many
others. Yet, pseudomyxoma peritonei is a
rare cancer – and that makes the journey very dissimilar to others. The medical
issues that we deal with are familiar only to a handful of others, most notably
colon cancer. Not only are PMP survivors
are typically dealing with loss of bowel/intestinal tract and also all or parts
of other organs such as spleens, gall bladders, appendix.
Let’s look at what’s new, how things
have changed:
When first diagnosed, we knew nothing
about this cancer. Such a long
word. So little to find about it. When your oncologist walks in with a google
printout of PMP from a British website – you are terrified!! That’s not exactly a comforting feeling. Over the past thirty-six months we have
learned a lot. We are not experts – and
we don’t know all the details about the different variations of appendix
cancer. We do know what many of the
other patients may be feeling – and we empathize with those who’ve lost a
myriad of internal organs that we always felt were important! We’ve learned a lot – by asking questions of
our own doctors – by reading and listening to others with disease.
Thirty-six months ago we were novices
in our knowledge. Today we are
advocates, educators and mentors of appendix cancer. We have surrounded ourselves with other
survivors and caregivers. We tell anyone
who will listen about this rare cancer.
Thirty-six months ago we were both
employed. We both left in the morning
for our jobs. George had been with his
company for over 25 years. I’d been at
mine for just over a year.
Today, we are both at home. While George is not exactly retired - - he is
tired. A lot. His stamina is low. Some days he is able to get up and move about
a lot – but most days he lasts just a few hours before he has to relegate
himself to an easy chair. I chose to
retire at this point in order to reduce the stress of living with someone who
has cancer – and to be able to react to his needs as the disease
progresses.
Thirty-six months ago George would
stay busy in his spare time building things out in the garage. Large projects in our backyard are evidence
of his hard work and creativity – a pergola, arbor and wheelchair ramp. Tedious, detailed projects such as a
grandfather clock and a dulcimer now sit in others homes. Unfinished, not even started, the wood for a
double bench meant to go in the backyard sits in the garage – purchased precisely
on the day that we received the cancer news.
Yet, we both manage to stay busy. George has found some satisfaction helping
PMP Pals Network with their newsletter and with their upcoming annual
conference. I’ve been working a lot on a
fundraiser for ACPMP Research Foundation.
I’m also exercising my creative juices making handmade things to sell to
raise money for PMP Pals Network.
Thirty-six months ago we anticipated
living a long life together. “Grow Old
Along With Me” was our wedding song back in 2002. We had dreams of wonderful vacations. We had dreams of spending our retired years
being spontaneous, getting out of town on a whim. Dreams of sitting and enjoying many more
sunsets in our golden years.
Now, we are fairly certain that will
not be our future. Rather than “the best
is yet to be”, the best of our times are mostly behind us. While we can still make precious memories –
and that is our goal – our best vacations are behind us, our moments of
adventure are behind us. Our lives are
now contained within a two hour radius from home so as not to be too far from
important doctors should any health issues crop us – because when they do, they
can turn urgent quickly.
Thirty-six months ago, George felt
that family meant primarily the nuclear family – those closest to us in a
biological way. He didn’t spend much
time with others.
Now, that definition has grown. He realizes that relationship with others is
very important. We are both touched by
the outpouring of love and kindness shown by others in the past few years. People have stepped up to be beside us and
help us walk through this journey. It is
important that he still have his “guy time” with some of his buddies and for me
to also have some girl time. In those
moments we feel some normality.
Thirty-six months - - Three years. In the grand scheme of things it’s not very
long. Yet so much has happened in that
period of time. Three surgeries (two for
the cancer and one for the broken neck), probably a dozen trips to the
emergency room (only two for me after medication reactions), 5 hospital stays
for a total of about 60 days and dozens of tests such as CT scans and
blood work. Where most people have fun
events on their calendars, we have lab tests and scans on ours.
We try to fill in the “in between
times” (in between tests, surgeries, etc.) with impromptu things as much as
possible. A movie here and there. Dining out (frequently). Pop in on friends as we can. Once this weekend’s celebration party for our
fundraiser is complete, we hope to do a getaway.
As much as we try not to let this “C”
word define us, it does. It permeates
into nearly every decision we make. It
is still the elephant in the room, the cloud sitting over us just as it did
three years ago. No doubt about it,
cancer sucks. We’d give anything to go
back in time – to before August 9, 2014.
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