The C Word – Three years later

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.