The C Word – A New Battle Day 163 - Reflections on 2016

As the clock ticks toward 2017, it is time to reflect on this past year - - and what a year it was.  We began the year with George in a neck brace, his cancer surgery on hold to find out if his neck would heal on its’ own.  When that did not happen, we went into February with a whole different surgery on the books.  A corpectomy.  We were not happy about having to put off the cancer surgery but we had absolutely no choice as we couldn’t move forward with George having a major issue with his neck vertebrae. 

As the months marched onward we breathed a collective sigh when the brace finally came off.

Anticipating another surgery we decided it was time to move Mom to a memory care facility.  Having been through 4 evening caregivers over the span of 18 months or so, it was becoming evident that we were not going to find anyone reliable enough to take a 20-hour a week position to care for her.  We had a solid AM caregiver, Olive, that was with us for at least two years.  But the evening job had become my second job – and caring for George and his mom for a good part of the early months of the year was putting a strain on our lives. 

In May we moved her to a facility – and hoped we could have a few months off to relax and enjoy our summer.  The staff where I work noticed immediately when the burden of caring for mom was gone for me. 

Alas, our joy was short lived when, in June, George started having issues with pain and nausea.  At first we thought it had to do with something he ate as it was quite intermittent.  We cued up the next CT scan and within days the pain and nausea was quite severe.  The scan showed some blockages and surgery was scheduled sooner than later, thus obliterating our laid back summer plans. 

While in some cases this surgery was easier than the first one (no chemo), it had its own sets of challenges ranging from the wound opening up, to getting C-Diff, and new pains.  The recovery was much trickier as he came home with PICC lines, feeding tube and drains – all “new” things to us.  Round the clock care was required.  Comfort was elusive. 

Yet, this time he was able to walk much quicker than the last time and was getting around the block within weeks rather than months.  His appetite, as little as it was, was still better than the first time around. 

But, the diagnosis this time around was more difficult to swallow – to know that the outcome is truly out of our hands, that there is nothing we can do at this point to slow anything down.  After several second opinions we are resigned to that fact – yet hoping beyond hope that the disease will not move too quickly. 

While we continue to forge ahead and try to make plans ahead yet not too far ahead – as we know that things can take a turn quickly – the reality of our situation is never too far away from our thoughts.  Is this the last???... Thanksgiving, Christmas, New Years, etc.  Or at least is this the last one with any real quality?

While no one knows the answer to their days on earth, when faced with a “terminal” diagnosis (and that word in itself is gut-wrenching) each good day is met with a “hurrah”, and you do not take those days for granted.  It is equally possible that I could go before George as well as any number of other people we think will live forever.  None of us should take the days for granted.

Just a short while ago the song, “You Are the Wind Beneath My Wings” came on.  This music is very sentimental to me as some dear friends of our used it as the background music for a video they made for my late husband’s memorial service.  As I listen to it I wonder if each person here on earth has someone who is the wind beneath their wings – someone who inspires them, moves them to be better people, makes them feel worthy and loved.  I know we have people in our lives who move us, who “get us”, who are walking beside us on this journey.  They keep us moving.  They keep us hopeful.  We need that. 

We are doing our very best to live each day, appreciate each day, appreciate one another.  This holiday season has been pretty good.  George has held up fairly well, having more good days than bad.  We are thankful for that.

We were able to take a “real” vacation for the first time in 15 months.  I have a feeling there won’t be any more – at least any more that will take us on planes anywhere. 

Both Thanksgiving and Christmas went fairly well.  George did a majority of the cooking with a little help from either my son-in-law or myself.  Since George’s diet has changed quite a bit, he has not been able to truly enjoy the meals as he has in the past.

We have enjoyed having our grandkids here this week, playing with them, going places with them, making memories with them.  They will leave on Saturday and while we will love to get back into our quieter routine, we will definitely miss them. 

We look forward to spending New Years’ Eve with our friends, Keith and Bonnie.  We have spent New Years’ Eve with them every year for many years now.  Early dinner and movie.  This year we get to go out for a movie again after having to spend the evening at our home for a few years since we had “Mom duty”.  Actually, this is the first year we have not had the added duty of keeping an eye on Mom for any of the holidays and have been able to just spend time in the moment enjoying the celebrations. 

As we head into the New Year we have no idea where it will take us.  While 2016 was particularly tough, will the next one be better or worse? While I am more than ready to kiss 2016 goodbye, a part of me fears going into 2017.  The journey with the “C” word is a most difficult one.  It is hard to watch your loved one change.  It is hard to watch them struggle to have something close to a normal life while living in fear every day.  They are different than they were before their diagnosis.  Some of the differences are good, others are not.  I can only imagine what the mental struggle is like for George. 

Yes, farewell 2016!  My prayer is that 2017 is a tad bit kinder to us.  I know there are many changes ahead for me in more ways than just at home.  But I pray that I can continue to handle them with grace and dignity.  I pray that I continue to have the strength of mind and body to deal with whatever happens during the year. 

I pray the same for George - - and all others in my life.  May God pour out His love and fill everyone with peace. 

Happy New Year!

The C Word – A New Battle Day 149 - Gratitude

I’ve got a lot to be thankful for these past few weeks.  You see, we managed to finally make a trip to the East Coast.  A trip delayed by over two years since the last time it was planned we had just gotten the “C diagnosis” and had to cancel.  Ironically, the last time we cancelled it was even before we’d met the oncologist and he told us that it probably wasn’t a good idea because of the pain.  Back then there was no pain, no symptoms, no nothing! 

Two years and a few months later - - now there is some pain.  Yet we were able to make this vacation happen (trust me, there were a few moments in the days leading up to it that I wasn’t all that sure). 

Our flights both directions were pretty dull (thank goodness).  Although we’d reserved first class seats in order to be near restrooms, they weren’t needed except for normal usage.  (And only then because the flight was 6 ½ hours long and we had expected no time on landing to make a pit stop at the airport.) 

The East Coast bore very, very cold temperatures ranging from 21F to about 36F, most of the time hovering in the high twenties.  Brrrrr!  We spent the majority of time at my sisters place, venturing out perhaps once a day to do something else.  The rest of the time was at our hotel.

We were able to spend precious time with all my siblings and their spouses and even some good time with cousins that are still in the area.  We had dinner with some of my high school classmates and another evening with my college roommates and their spouses.  Other than the visits the only other thing we did was a trip to see a whole bunch of gingerbread houses on display at a library.  Yes, it is Christmas time in New England for sure!

We are grateful for this vast support system as each and every one of those have been following our journey.  They all welcomed George warmly and let him know that he was in their prayers. 

George held up fairly well but by days end he was more than ready to go sit quietly in the hotel and rest.  He experienced his normal pain and/or discomfort but nothing ever escalated.  We were prepared with all the medications but fortunately did not need to use them.  Yes, we were grateful for that as well. 

The holidays are fast upon us with Christmas just ten days away.  Am I ready?  As ready as I can be.  Just more gifts to wrap and a few things to bake or make to give to neighbors.  I have found that I am making only the easiest of things this year.  No breads, no homemade pumpkin pie…. One cookie and one bar recipe and then easy Chex Mix and Crispix Puppy Chow (a yummy combination of peanut butter, chocolate chips and confectioner sugar). 

Simple is better these days.  Even my decorations have taken on a more simplistic feature, just enough to let us know it is the holidays. 

It is more important to surround ourselves with our loved ones and our support system of friends these days.  All the rest is “the gravy” as they say.

We are grateful that we had a quiet yet enjoyable vacation (the first plane ride in over 3 years for George).  We are grateful for the opportunity to relax and enjoy the Christmas tree lights… to spend time with friends and with family… and, for the first time in years, not be held back by anyone’s schedule but our own as Mom is being well cared for elsewhere. 

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…