The C Word – A New Battle Day 228 Little Moments, Big Emotions

The C Word – A New Battle Day 228

Little Moments, Big Emotions

This journey we travel in the C world can be so precarious.  One of the things I learned seventeen years ago is that there will be moments frozen in time.  There will also be trigger point moments that cause a rush of emotions and make you realize just how precious life is.  There will be moments of sadness and joy. 

Today ran the gamut.

It started out with just a small gesture that many couples take for granted and yet is one that people who have undergone not only the PMP surgery but others as well may not experience very often.  Until it happened today I didn’t realize how much I missed it.  I’d be lying if I said I hadn’t thought about it but, again, didn’t realize how much I missed it.  What is “it”?  Laying side by side and “spooning”? 

Since the first surgery back in 2014 George has not been able to lay on his side.  He has made attempts but because of things being moved around in his belly he finds the position quite uncomfortable.  When he broke his neck and then had the second surgery it made it even more impossible for him to be comfortable. 

This morning, for the first time in a very long time, George rolled over on his side and spooned me.  I was so surprised. I was very touched – because I know what an effort doing that is for him.  I shed tears because that, for me, was such a precious gift.  In that moment I realized how much I missed being able to do that with him.  This simple gesture (for most people) moved me so very much.  I was both sad and happy at the same time. 

As the day progressed, I got a visit in with my sister before dropping her 

and her husband off at the airport.  Our visit this time was very brief but we were able to have a couple of good chats.

 

This afternoon George and I took a glass blowing class and had the opportunity to make a glass bowl.  I had won the pass for two from a Cancer Carepoint auction last fall.  I thought it would be a fun activity for us to do together … and it was.  It did not require a lot of stamina.  The class had eight people in it and two wonderful instructors who bore the brunt of the work and made sure that each person would have a nice quality product.  The smile on George’s face was worth every penny.  Pure joy.

After the class we then met up with friends, Sherry and Steve, to see the movie “The Shack”.  It is a deeply spiritual movie about one’s relationship with God.  Sherry had loaned me the book to read when George was in the hospital (I forget which hospital visit) so she and I knew that it would be a tearjerker. It was a great message for us.  Our relationship with Our Father is so tender and so moving.  Strong emotions to experience yet again today.

We closed the day out with dinner with Sherry and Steve and had a good time visiting, something we don’t get to do with them very often.

This was a wonderful day all-in-all.  I am pretty exhausted and emotionally drained from the activities of the day.  I would give anything to know that I had years and years more of these to come with George.  Yet unless God grants us a huge miracle, I know that I don’t have that. 

So I will make the most of the time we have.  I will continue to try to make more special moments like today.  Experiences that I can hold on to and remember.  

The C Word – A New Battle Day 226 - Trusting Instinct

One of the things I have relied on over my life is to trust my gut instinct.  Sometimes these “instincts” are nudges from God.  Often I try to push them aside.  You know what they say, if you aren’t listening you may not hear what He is trying to tell you.

A few months back, just after the first of the year, I wrote about “Change is On the Horizon”.  In that note I indicated that I felt the time was coming for me to leave my job and spend time with George.  At the time, I did not know exactly when.  But I’d already felt one “nudge” from God.  Then, in February I felt it again.  Laying beside George one morning I felt in my “gut” that the time is coming soon.  As I lay there, I started to calculate when would be my last day at work.  Within a couple of days I knew exactly when I would give notice and when I would leave.

Ironically, on the exact same morning noted above, my boss/friend came to work rather frazzled.  She walked in my office and said, “Oh, thank goodness.  Your things are still on the wall.  I had a nightmare that I came to work and your walls were bare.”  I can’t begin to tell you how that made me feel.  I sat there stunned and offered up some response like, “nope, still here”.  I knew then and there that God was also preparing her for what was to come.  Some would chalk that experience up to coincidence… but I knew that it was a message from Above.

This decision does not come easily because as those close to me know, my job has been a lifeline for me these past four years.  It has been an escape from the drudgeries of boredom, a place where my soul has been fed, a reprieve and a place of respite that has given me strength to carry on with the often daunting tasks at home. 

However, I am listening to that “still small voice” that is telling me it is time for me to make preparations for what lies ahead.  While it would be great to say that George and I will have time to be spontaneous and do day trips, etc., I can’t say for certain that will be the case.  There have been times in the past when I thought, “Ah, freedom at last”… only to have the walls come tumbling in around me.  That could happen again.  I won’t get my hopes up just yet!!

So, today I turned in my 60 day notice.  Since I wear a lot of hats I want to have enough time to finish up some projects, tie up loose ends, and give as much training as I can to those who will be covering the job.  Come April 28, 2017 I will depart from work and begin the job of caring more for George. And often just “being there” for him to bridge the gaps of loneliness that I know he must feel being home all day long.   Between now and then I have a lot of ground to cover at work and some to start at home. 

Not working will allow me the ability to act at a moment’s notice without care as to how many other lives it will affect.  I won’t have to worry about work related issues or reports and how will I get it all done.  I will have one soul purpose.  To respond to and be available for my husband to whom I pledged “in sickness and in health” for as long as is needed.

Instinct…. God messages…. It’s so important to listen. 

The C Word – A New Battle Day 210 - A Valentine Day Story

Today is Valentine’s Day 2017.  A day set aside to celebrate love.  Mostly commercial these days – evident with the overpriced flowers and candy for sale.

But we know that one should celebrate love each and every day, for love cannot be taken for granted… life cannot be taken for granted.

For those of us who are married, we remember our marriage vows.  We promised on that day to love, honor and cherish our partner.  We promised to laugh and cry together.  We promised to love in times of sickness and in health.  We promised to stand side-by-side until death do us part.

These vows can sometimes be tested in those difficult times.  Most of us will experience times of financial troubles, or difficulties dealing with work related issues.  Sometimes our times of trial or short lived and other times can go on for what seems a life-time. 

George and I are a bit melancholy today as we received news last night that a fellow PMP survivor took a turn for the worst.  Having been declared “NED” (No Evidence of Disease) this past fall and knowing that he had been doing exceptionally well since his surgery (which, by coincidence was exactly one year after George’s first surgery), he exemplified what everyone with this disease wishes for.  Recently he’s been experiencing symptoms of a bowel obstruction.  CT scans were done and it looked like he had one caused by scar tissue in his bowel tract.  He was scheduled for surgery yesterday to take care of that.  Apparently they found that not only had the cancer returned but it is aggressive.  I do not have all the details as to what happened yesterday.  But I do know full well what he and his family are going through.  Those words “we can’t get it all” ring loud in my mind.  It is a shock!  Surreal.  My heart goes out to the family as they deal with the news that there is no further treatment available to him. For ourselves, we don’t know whether or not further surgery is an option.

What I do know is this.  Like our family, our friends’ family is deeply spiritual.  Firmly entrenched in faith and in God’s love for them.  His daughter stated that “so many people… are praying for a miracle… but watch for that miracle to be what God wants, not what we want”. 

We always stand on Hope and Faith and Love.  It is during our trials that reaching inside ourselves for these things keeps us on a forward path. 

It is during these times that we turn to those whom we love.  If married, it is our spouse that we lean on for support and encouragement.  It all goes back to that promise that we made in our vows. 

So today, on Valentine’s Day, my wish is that you have someone in your life that you can lean on.  More importantly, I pray you have a God that you can turn to. An ever-present God who will never leave you.   

One of the sayings that was printed at my church growing up.  “God is Love” . We know that Love Never Fails! 

The C Word – A New Battle Day 190 - Navigating the Dash

Since we are becoming older, the “opportunity” to attend funerals or memorials becomes more frequent.  Many of these refer to the dash on one tombstone or in ones obituary.  Before and after the dash is ones’ beginning date and ones’ expiration date.  What happens in between is called “LIFE”. 

11/20/1920 - 9/5/2006, 6/28/1924 – 7/29/2012, 11/4/1957 – 1/28/2000…. These are some of the significant dashes that have been part of my life. 

This month we celebrated a couple of birthdays this past week – 1/21/201x, 1/23/200x.  Life still young and to be lived.  Precious little girls.  So much for them to look forward to. A lot more “dash” yet to be seen.

In the past few months we’ve seen a few people whose dash has expired.  Some people’s dash comes quite unexpectedly as these folk did.  It caught people by surprise. 

This week marks seventeen years since my Mike died.  It seems incredulous that it has been that long.  His dash lasted just 42 years.  For Sara, it was half her life-time ago!  For Becke, longer than that.  There are still times I shed a tear or two when I think about the moments we’ve celebrated without him.  It was a dash that was well lived.

In reality, we all know that our dash will expire one day.  We do not know when, not exactly.  As the expiration date comes closer, sometimes we have an inkling, but we never truly know when our time is done.  Only our Father knows for sure. 

In my life there are now two people whose expiration date is on the horizon.  At least that’s what we think based on medical science. 

George’s mom fell ill again this week.  She didn’t fall this time, but developed pneumonia.  This has triggered her congestive heart failure to ramp up.  Which in turn has become a prognosis where she likely has less than three months to live (though, given her history she could defy but probably not much longer than that).  We have to prepare ourselves for what’s to come.  While in the long run it is for the best  -   I will still miss her.  Mom has no clue about what is going on with her and perhaps that is a good thing.  She lives her life in a bubble called Alzheimer’s.  It protects her from the knowledge that her heart is failing.  In her mind she is “just fine”.  So she lives in oblivion and is happy at the simplest things that take place in her life… quite frankly, she is ecstatic when we come to visit.  She doesn’t remember that we were just there hours or a day before so each time is brand new to her.  In those moments she is happy and content and just gushes “love”.  She’s not worried about what’s to come.  I’m glad for that. She’s approaching the end of her dash.  10/10/1925 - ?/?/2017? 

On the other hand is George.  His date is nowhere near an imminent end stamp.  Yet he knows it is there.  He is fearful of what will happen.  We are ever grateful for those moments when he feels somewhat normal.  Yet he lives with constant reminders that things are not.  He worries about what those little cancer buggers are doing inside his body.  He also worries about what will happen after his dash has stopped. 

There are some who know their dash is looming just beyond the horizon so they take the opportunity to knock out things that have been on their bucket list.  Depending on the circumstances, some people just stop living the dash, stop existing in their life, waiting for the end. 

Sometimes our dash comes unexpectedly while other times we know it is coming but we’re not exactly sure when.  Most of us live life believing that our dash will not come for years or decades.  I am not sure which one is “best”.  Do I want to know “when” – or not.  In some situations when we “know” the end is coming we have a chance to prepare, to get things in place, to get the chance to say all the things we want to say – and the opportunity to say goodbye to our loved one.  Yet if we live our life right we will be doing things in this moment, during our dash, so if death comes unexpectedly we don’t live with regrets. 

My advice - - live your dash in grace.  Be nice to others.  If you work, do it well.  Love your family, your friends and, if you have the opportunity, your neighbors. Tell your loved ones that you love them, and show them as well. Take advantage of the precious moments you have in this thing called “LIFE”.  Your footprint – your “dash” – leaves an impact.  Make it a positive one.  Do not take things for granted.  Be the best you can be in the here and now.  Tomorrow is not a guarantee. Only this moment is guaranteed, this time between the creation date and the expiration date.  Make the most of it!

The C Word – A New Battle Day 181 - Comparing Notes

This past Saturday I pulled together a group of PMP survivors and caregivers to “ring in the new year”.  I tried to gauge the time based on the small group that gathered in July.  That one had 7 people in attendance, this one was more than double that.  While three hours seems like a long time, some of us lasted four hours.  We were so grateful that the restaurant did not seem to mind us hanging out that long.  As people left to go elsewhere we gave up the unused tables to they could get other customers in there.

Of particular interest is the fact that not one of the PMP survivors in this group has ever gotten a NED (No Evidence of Disease) diagnosis.  Of the 8, 50% were male.  All of the male members had one or more surgeries with the final diagnosis that HIPEC could not be done due to the extent of the disease.  So the guys really were able to compare notes and talk about their current maladies. 

Of the four women, a couple of them are expecting a second surgery sometime in their future. 

ALL of these people are so nice.  We had a good time being together and spending at least a part of the time talking about their lives beyond the disease which has taken over them. 

Since this disease is so rare, it is hard to have conversations and feel a connection to other cancers.  The body parts that are removed are far different from other cancers.  As caregivers it is also difficult to relate to other caregivers.  For the most part, our spouses “look healthy” and, aside from twinges and fears of small bowel obstructions, if you didn’t know there was anything wrong with them you wouldn’t suspect anything.  For now…. At least for now.  Not one person there wasn’t aware of the fact that things could change for them at any point. 

That’s the thing with this cancer.  It lurks.  It lies in wait.  It’s unspoken yet always there.  It changes your life.  I know all cancers do, but advances in some cancers means cures or good prognosis. 

But events such as the one we had on Saturday makes us feel part of a community.  One where we can appreciate one another, support one another and feel that we are making a difference helping each other out.  

The C Word – A New Battle Day 172 - Changes on the Horizon

I enjoyed very much having time off during the holidays.  I was busy yet not so busy that I couldn’t enjoy the festivities.  For the first time in years I did not have a mother-in-law to care for on actual holidays (a source of constant interruptions to the day).  And for the first time in 3 years George was doing well enough to participate and enjoy the day as well.  I wanted to capture those moments as I have the sense that this is the last time we will be able to enjoy the holidays this way.  I can feel change on the horizon. 

We enjoyed time with the granddaughters for several days, taking them to the movies, to a museum, to Dairy Queen and Baskin-Robbins for treats, even ice skating for a short bit with “cousins”. We thoroughly enjoyed a nice dinner at Pino’s Trattoria for New Years’ Eve with Keith and Bonnie and pretty much agreed that the chosen movie was not all that great.  But getting out on a double-date was wonderful as the past few years we have had to adjust either because of George or his mom. 

As I headed back to work on January 3rd, I couldn’t help but feel that I was leaving my “child” at home.  Now, I know George is not my child but as I drove towards work I had the same feeling I had when I left my child at daycare or at school for the first time.   I felt guilty leaving him home by himself as I know he fares better with me being nearby.  I reflected on where life has been and where it is going. 

Four years ago this month is when I walked through the doors of the Blind Center.  My reasons for volunteering at that time had everything to do with where I was at that point in my life.  Having lost my mom months earlier I had lost a sense of purpose.  George was working full time and I had too much time on my hands.  Within months things morphed and I found myself working there. 

Now, my husband is home alone while I leave for work.  And I can’t help but feel that I am supposed to be there with him.  And I also know that there are things going on in the workplace that will bring about change.  While I don’t know where that will go, I feel that God is already putting things in place so that I can make changes as well.  “When God closes a door, he opens another.”  I feel the nudge, the tug, the pull.  I love my job.  But I am getting signals and signs that change is coming. Decisions that I must make.  And I am okay with that.  Changes on the horizon. 

At home I feel we must do some renovating and turn mom’s apartment back into bedrooms so George and I can move downstairs.  Our bed won’t fit in the space that was mom’s bedroom which means we must take apart the cabinets and make the “living room” back into the master bedroom.  George is fighting me on this a little bit, but I feel that the time will come when going up the stairs will not be as feasible as they currently are.  And I would rather convert the room while I have the time and energy rather than wait until it is urgent.  Change is on the horizon.

While I would pray for a laid-back, easy going 2016, the truth is that is not likely to be the case.  2017 is likely to be another topsy-turvy roller coaster year.  I feel so fortunate that we made it through one entire holiday season with nothing catastrophic (other than the fact the George’s mom fell twice and was in rehab for the season – but the fact that I don’t have to worry about her since she is in facilities has been wonderfully freeing for me).  My gut instincts tell me that change is on the horizon – and I need to prepare myself at home and at work for these changes. 

"For A Moment"

Peace be still you are with me
In this hope I abide
Jesus be my sustainer
Strengthen me in this trial

And I know, it's only for a moment
And everything is working for your glory
But I need, your perfect love to hold me
Safe within your promise
Til the storm has passed

When this burden is lifted
I'll give thanks to your name
But until it is finished
I'll give praise just the same

For we have this hope
As an anchor for our soul
You are with us
We will never be alone

************* 

I Surrender All

Israel Houghton

All to Jesus I surrender
All to Him I freely give
I will ever love and trust Him
In His presence daily live

All to Jesus I surrender
Humbly at His feet I bow
Worldly pleasures all forsaken
Take me Jesus take me now

I surrender all
I surrender all
All to Thee my blessed Saviour
I surrender all

All to Jesus I surrender
Make me Saviour wholly Thine
Let me feel the Holy Spirit
Truly know that Thou art mine

All to Jesus I surrender
Lord I give myself to Thee
Fill me with Thy love and power
Let Thy blessings fall on me

All to Jesus I surrender
Now I feel the sacred flame
Oh the joy of full salvation
Glory glory to His name

I surrender the future to Him who knows all things.  I pray and know that he is already working in my life – in George’s life – in our family.

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!