The C Word – Sept 30 2017 Three Year “Survivorsary”

I just re-read the last posting – and it was soon after writing it that George’s mom passed peacefully in her sleep.  September 16, 2017. 

Today marks three years from the first surgery for PMP.  Facebook popped up with memories from that day.  Early morning check-in for 7:30 surgery.  9:30 the “thumbs up” that surgery would continue and HIPEC be performed.  Surgery ending after just 7 hours rather than the expected 10.  George being taken to ICU overnight (and ended up being three or four nights).  We didn’t know how much they struggled during surgery as George had gone into shock. 

That surgery extended George’s life.  Had they not discovered the cancer during the scan for a kidney stone, it is likely that he would have already died.  As it was, the disease had progressed along pretty far.  We are lucky to have found a great surgeon – someone who gave us hope. 

Here we sit, three years later.  Our lives had changed a lot, more so after the second surgery than the first.  After the first we were able to put back some semblance of our former life.  Not so after the second. 

I have to admit there are times it is difficult.  There’s unspoken fear.  There’s physical discomfort and constant fatigue (for George).  These affect our lives in that we are bound to stay close to home nearly all the time.  Our ventures out are generally short. 

About this time of year is when we normally would be taking a week-long vacation as we waited until kids had gone back to school.  We had some great trips – Alaska, Canada, Missouri, Arizona.  I am sad that we can no longer do those kinds of trips. 

Next week we have a PMP conference and the topic is the mental and physical health “after diagnosis, after surgery, etc”.  I hope they have some good information.  I think we can both use this.  Of course, the best part is seeing people we rarely get to see and having fun forging new friendships with others ‘just like us’.    

 

The C Word – Sept 14 2017 update - The Long Goodbye

The last note indicated that the colonoscopy revealed a “friable growth”.  Thankfully, the biopsy showed this was a benign growth and nothing to worry about.  Earlier this week George had his semi-annual scheduled CT scan (not to be confused with the intermittent ones that may occur when we go to the emergency room).  Tomorrow we meet with the oncologist to go over the results.  Also on our discussion list is vitamin B12 shots which may help George’s energy level.

However, right now we are also awaiting George’s mom’s passing.  While we have had several times over the past six months when we really thought “this is it”, she continually rebounded back (but always a little less of herself with each recovery).  In fact, two or three weeks ago she was unresponsive and in a state of extreme sleep.  Hospice said she might go within a week or so.  But, the next day she was sitting in her chair and still eating well.  They determined her medications may have been causing the sleep and cut it back.

This time, though, really looks like it is the end.  She’s been sleeping since Saturday evening and not really eating at this point.  When we popped in for a quick visit yesterday, we found her fast asleep, calm, not able to open her eyes to acknowledge our presence.  She’s had a bad bedsore for a few months which, despite all attempts by hospice, got worse and not better, a sign that her body cannot fight infection.  She is on medication to keep her comfortable – and also keeps her sleeping.  Our emphasis right now is comfort care.  We do not want her to be in pain. 

A phrase for Alzheimer’s patients it “The Long Goodbye”.  Once diagnosed, the average lifespan is 8-10 years.  Our energizer bunny mom has lived with the disease for 11 years.  The first 8 years she declined at a fairly slow rate.  Over the past few years it picked up speed.  We’ve known this time would come.  We have been waiting – patiently – for when God and mom decided it was her time to go. 

After we spoke to Stephanie today, she wrote “I’m not ready to say goodbye yet”.  For the living, I don’t think we are ever truly ready to say goodbye.  No one wants to lose a loved one – even one who is only a shell of her former self.  Even though we’ve been “waiting for her to pass” – our desire would be for our loved one to live on.

Yet, Mom has been ready for quite a time.  In those precious few moments when she was somewhat lucid, she knew she was not able to remember things.  She would get frustrated and angry that she couldn’t remember.

 Then there were the moments when she was reliving her past just as if it was happening right now.  She cried in fear and anquish at some of those moments – things no child should have to experience.  You could not convince her that what she was feeling and fearing happened some 80 years ago. 

There have been moments of laughter in the past six months.  They were at the expense of mom’s imagination gone wild due to the Alzheimer’s.  There was a visit once where she went on and on about being part of the PTA.  When we asked her what she’d been doing that particular day, she responded with, “We just had a meeting with the parents…”  She went on to tell us about the band, their uniforms, their travel, and all that comes with that responsibility.  It morphed into a tale that the kids lived at the edge of the county and worked in the fields.  The Indians came down to help them – there were twelve of them and one was the chief.  It was a day that we could not get a word in edgewise – she was over the top excited, happy and cheerful.

Even though we know that none of that story was true, this is what I choose to remember.  Mom was happy, cheerful, talkative.  In her mind she was responsible, helpful, enjoying the band kids.  The look on her face was just precious.  That’s what I choose to remember as she slowly slips into her forever home in the coming days.

This has been a long good bye.  She is the last “parent” I have to lose and that makes me sad. Yet also relieved.  For George, myself and his sister this has been an extended period of time when we have had to care for her.  I was not only daughter-in-law but live in caregiver for her for quite a few years.  Rosemary has been in charge of her medical care which has been daunting.  We’ve all put a part of our lives on hold – never expecting it would take her this long to succumb to the Alzheimer’s.   We will experience mixed emotions, I’m sure. 

Yet after eleven long years her body will be whole again – and she will be reunited with her husband who has been gone for over 40 years.  She will laugh again – she will be young again. She will join the party with those who’ve gone before her.