The C Word – A New Battle Day 121 - “Oh What a Month!”

For the past month or so we’ve been taking advantage of the fact that George’s health has been fairly stabilized.  Between movie dates and play time with the twins and special activities, we’ve had quite a busy weekend schedule.

On the 5^th I treated my daughters and some special friends to a wonderfully funny night with Christian comedian Anita Renfroe.  It was so good to get out and laugh!

The next morning was our wedding vow renewal.  This was completely organized by our girls and we had no idea what they’d planned.  All we had to do was show up – and given that the event was in our backyard in the coolness of a fall morning –that was relatively easy to do.  They did some simple decorations, made a cake, and created a special photo background for us.  Stephanie wrote the ceremony and all three read from their “script”.  With some serious, lovely words intermingled with some humorous “tongue in cheek”, we laughed and cried throughout the ceremony.  My daughters asked George if he promised to “get the remote from across the room even though he didn’t put it there – not to step foot on a ladder or roof or sit backwards on the toilet – and hire professionals to fix things”.  His daughter asked me to promise to “put things back where they belong, respect the sanctity of his tools – get him glasses of ‘wa wa’ when he is thirsty – and not awaken him for a bowl of cereal when Mr. Moon is still out (something she did when she was little) – to control my lead food when he is in the car – and continue to provide massages and toasted English muffins with pinky butter on them”.  We both hesitated JUST a little bit before saying “I do”.  It made for a pretty special memory. 

The following weekend George arranged for a special birthday dinner for me – my 60^th.  That just seems to not even be real!!

After some discussion during one of our evening strolls, George contacted PMP Pals and has offered to help produce their newsletter.  It is one positive thing he knows he can do that will not only help others but will help him do something productive as he sits at home.  And I will organize get-togethers with some local people and try to grow our local PMP survivor and caregiver support system. 

We are still trying to wrap our minds around this disease.  The last “piece of the puzzle” was a report written by an expert (though not a name we recognize) done by an independent team as part of George’s insurance company.  This report was: 90% reports and analysis done over the past two years by George’s current team of doctors, 5% details about this “expert” doctor and a whole lot of reference notes that meant absolutely nothing, and 5% the actual “findings” of said doctor.  While none of it was really new news, the disturbing part was seeing in writing what they believe the prognosis is.  And that actually put “expected survival” rates on it.  It wasn’t surprising, at least not to me, as I have already concurred that George has 3-5 years at best.  This reported stated that with George’s particular mutation that average survival rate is 24-30 months.  I’m holding out for the longer period of time – but I totally know that things can change at any time.  One can still hope – and hope is all we have sometimes. 

We believe that more surgery is in the future but we don’t know exactly when. There are two schools of thought.  Both required a waiting game.  The first one would to be to do periodic CT scans perhaps every three to six months to look for tumor and mucin growth – neither of which show up really well on any type of scan.  We can be “proactive” and go in to do more debulking surgery and maybe prevent losing more organs. But, given that scans don’t show exactly what is going on there is always the chance that damage has already occurred.  The second school of thought is to not do surgery until there are actual symptoms such a small bowel obstruction where dietary changes do not fix the problem or some other problematic symptom arises.  Neither of these are optimal options – but they are the only options at this point.  Every surgery has risks with the main ones being altered physical states requiring more skillful attention afterward.  Whereas this past surgery we were able to have tubes and drains and PICC lines removed within six to eight weeks, in future surgeries those types of things could go longer.   

So, back to today – to this moment.  This moment where George has days that he can still eat with relative comfort, can walk without much pain, can drive and get around to do errands.  Taking advantage that although our daily processes are altered because of his physical stamina it is at least at a point where on most days we can get out and do things.  While we sort of know where this journey is going, we need to focus on what we have right now. There is no “expiration date” stamped anywhere yet and, at least for the immediate future things are going okay – and this may be the best that we can expect so we need to utilize these moments and make special memories. Memories which may be bittersweet – and which in all honesty I recently came to realize are more for me than for him… because I am the one who will need to remember the good times for a long time to come.  

As we enter this week of Thanksgiving there are things I am thankful for:  I am thankful that George and I have a comfortable home where we can sit and relax and be with one another.  I am thankful for his love.  I am thankful that we were able to renew our marriage vows.  I am thankful for our daughters who have gone out of their way to spend time with us and who created a great memory with the celebration of our vows.  I am thankful for their families for allowing us to spend time together, sometimes sacrificing their own family times.  I am thankful for the friends and family who continue to surround us with their love and support, cards, notes and phone calls.  I am thankful that we will be able to gather as a family on Thanksgiving Day with not only our children and their families but with my younger brother and his wife who are in the states for a few months.  I am thankful for a job that is supportive of my needs and co-workers who stand beside me when I need it and fill in for me when needed.  I am most thankful for my faith and my God who carries me through the best and the worst of times.