The C Word – A New Battle Day 135 - Sometimes things just suck!

That’s what this disease is all about.  There are not a whole lot of options out there – and the ones that are there are, well, bah humbug. 

After receiving multiple types of reports and opinions, we decided to meet with the surgeon to figure out “where do we go from here”.  While his opinion is not surprisingly new news, it still sucks to know it’s pretty much our only option.  And that is that there should be no surgery unless or until George becomes symptomatic where nothing else brings relief.  Even then, we will have to weigh the pros and cons, risk versus “reward” to determine if it is a viable option.  Like I said… ick!  Sucky!  Sorry, that’s just how I feel! 

According to Dr. B, cytoreductive surgery is really not a viable option (that means, to just go in and take out some of the tumors and mucin) because the risk is higher than the value.  Even with a small bowel obstruction which would be the most prominent reason for needing surgery, is a high risk because the outcome could mean substantial loss for quality of life.  With only about 5 feet of intestinal tract left, to have less means dramatic changes. 

Does anyone mind if have a pity party today?  I hate that out of all the options and high hopes we had two years ago, we have been reduced to one very limited option.  And it’s not really an option - - it’s the only path even available at this point in time.  I hate it because it affects George so much.  He lives in fear every day, every time something goes in his mouth.  He worries about obstructions.  He worries about how this is affecting the way he lives.  He worries about the toll it will take on his family, especially the girls.  He worries about how it affects me – more than I worry about how it affects me. 

I think we both try really hard not to show how this is affecting us from an external point of view.  But internally, it is affecting us far more than we care to admit.  We don’t know how long this journey will take – but we do know that it will end far sooner than either one of us ever thought when we began our life as husband and wife.  And, while after the first surgery we figured the odds were higher that life would continue for eight or more years, that is not the picture being painted now. 

I do look forward to our short vacation coming up.  It is a laid back just-visiting-family and friends type of vacation… no sightseeing, etc.  Which is okay in my books because that’s what I do when I go “home” to Connecticut.  It will be somewhat melancholy at times because I do realize this may be the last time that I will be with my siblings and their spouses all at the same time and as a couple.  I don’t believe there will be any more journeys east with George at my side.  And that makes me sad, very sad. 

We are all too aware that we don’t know when it will be the last holiday together – or at least the last holiday when George is in a relatively good place in regards to his health.  And that, too, makes me sad. 

Debilitating illness certainly opens our eyes to the fragility of life and how quickly things can change.  Of course, I did learn that lesson nearly seventeen years ago.  These circumstances are very different than then, this just amplifies it a bit more.  I don’t think one is ever ready for it, ever fully prepared for it no matter what one thinks. 

We must continue to put one foot in front of the other, keep walking the journey.  Perhaps a miracle will occur – perhaps not.  We don’t know.  The not knowing is difficult. 

Enjoy the moment - - breathe - - make the best out of the day - - think positive.  These things are sometimes easier said than done…. And some days, like today, you just want to kind of wallow in the pity for a bit and allow the feelings to come… and then pick yourself up by the bootstraps and keep walking.  I’ll do that…. In a minute or two…