The C Word – A New Battle Day 255 - A Tough Week

Never take moments for granted.  That has to be the mantra for anyone with cancer.  Some days are good and you feel hopeful.  The next day could be bad and you lose sight of hope.

We have had one of those weeks.  After a pretty good overall week last week where George got some things accomplished.  He tinkered in the garage some, always a good source of enjoyment for him.  He did a few things outside. 

On Monday things had gone pretty well.  We went for an evening stroll.  Shortley after that he was experiencing pain.  I should preface this with the fact that one of the things he had done earlier in the day was putting a couple of large planters back into the wooden stands he’d built for them.  Considering that he won’t carry the laundry basket, this did require some concerted effort on his part.

At bedtime he took a strong pain medication to see if it would help.  While he did fall asleep pretty quickly, within a couple of hours he woke up still experiencing pain.  The decision was made to take a trip to the ER to see if we could either figure out what the cause was or to at least rule out “bad” stuff.

We were there quite a long time considering most of our trips.  It took a while for the CT scan to get ordered up.  All the bloodwork came back fine. The pain medication took a long time for them to get to us.  We had arrived in the ER at about 11:45PM and it was close to 2:00AM before they finally gave it!  The CT scan showed nothing acute or significant.  They compared it to the Sept. 2016 scan rather than the one just a few weeks ago. 

At 3:30AM we headed for home where George quickly fell asleep until nearly 10:00AM.  I, on the other hand, took over an hour to wind down, falling asleep at 5AM only to get up at 7AM and head to work.  Fortunately, I only work four hours a day!  (In a few weeks, I won’t have to worry about that anyore.)

We figured that, perhaps, George maybe pulled or strained a muscle from lifting the planter box.  The pain originally was in the groin and radiated towards the back.  By the next day it was mainly in the lower back.  He took pain meds on Tuesday and then converted to Advil which he has been taking pretty consistently since then.  It has helped some, but it has not gone away completely.

He is frustrated.  He is tired of being tired.  Between his back, belly and tailbone he experiences discomforts nearly all of the time.  He is growing bored sitting at home yet he isn’t feeling well enough or strong enough to get out and about too much.  Even yesterday when we went to the grocery store I could tell he wasn’t feeling well.  Normally he likes to walk up and down the aisles looking at things (and putting extra things in the cart), but he wanted only to go exactly to the aisles for the half dozen things on my grocery list.  Today at Costco it was the same.  That’s just not like him at all, so I know he is not feeling great. 

Last night I brought up the fact that maybe it is time to look into palliative care.  Palliative care may be able to help alleviate some of his discomfort so that he feels like moving about again.  Maybe they have something that can take the edge off the pain but doesn’t make him tired.  Unfortunately, our oncologist at Stanford Cancer Center has just this past week moved and we have to see someone new.  We put in a call today to get an appointment with a new oncologist that we can meet and he can refer us to their palliative care department.  George is not exactly thrilled about having to bring another oncologist up to speed on his cancer.  Maybe we’ll be lucky and the new doc will have some basic knowledge. 

It is hard to watch him going through this.  I feel helpless because there is nothing I can do.  At least not in the way of physical comfort.  I can only be there for him for emotional support.  I still wish this was more I could do for him. 

In a few weeks I do hope to do something BIG to help bring more awareness to PMP.  I am actually a little bit excited to be able to do this.  I can’t go into details because George and I are the only ones who know so far.  For my faithful followers, stay tuned!

The C Word – A New Battle Day 243 - Scan Update

On Thursday we saw Dr. B to go over the scan done on the 10^th.  The days leading up to getting the results are usually a little bit anxious.  The “unknown” can be scary. 

The scan showed that the known tumors are still growing a little bit.  Unlike the last scans, this one actually stated that there appeared to be low density areas around the bowels (which is likely mucin growth).  For the most part it showed what one would normally expect to see with this type of cancer.

George was relieved the scan did not show growth anywhere else.  It is unusual for the cancer to show up elsewhere, but it can happen.  To know that it is still “self-contained” in the abdomen is good news (not the cancer is good news). 

We know a CT scan does not show reality, there may be more than meets the eye.  Unfortunately, there is not true scan or test that is available to determine a true picture of this disease and how it is progressing or not.

Unless something comes up sooner, we are still on wait and watch and will schedule another scan in six months’ time.  Praying that nothing comes up between now and then.

This week George also met the gynecology oncologist that performed the HIPEC (chemo) part of his first surgery.  We have never formally met him as George was under anesthesia by the time he entered the operating room back in 2014.  George is volunteering with the PMP Pals’ group doing their quarterly newsletter and had approached Dr. L to get an interview for one of the upcoming issues.  Dr. Lilja used to be in a punk rock band and then decided to get into medicine.  He and Dr. B were acquainted when they were at a symposium back in 2005 with Dr. Sugarbaker and learned about HIPEC.  That’s where our “dream team” began to formulate!

That’s all the news for now.  Kind of nice not to have bad news or sad news for a change.   

The C Word – A New Battle Day 239 - Mother God

We recently saw the movie, “The Shack”.  It was an excellent movie.  In it, Octavia Spencer plays the part of God.  It took a bit to get used to that portrayal, since we usually view God as a male persona.

When we think of women in general, what are their qualities?  Warm, caring, nurturing.  We see arms outstretched for a hug.  They prepare food for their loved ones.  They listen to our fears and gently hold us when we aren’t feeling well, are feeling unsecure.  Their arms make us feel safe (in a different way than a man’s embrace).  Mother God tells the main character, Mac, that she came to him in a female “body” because that’s what he needed.  He was struggling with some difficult memories in his life and if God had come to him as a man, he would have rejected him or been wary of him.  A Mother God was what he needed at that time.  (Later in the movie, for a brief time, God came as a man.)

This morning, very early in the morning, I lay in bed and as often happens these days my mind started spinning.  I am finding it harder and harder in those “still, quiet hours” of the morning to find a lot of peace.  While I am grateful to hear his quiet snoring which lets me know he’s still alive, I know I am losing him more each day.  The strong and confident man he was before is slowly losing its’ grip.  He yearns to be able to do more – to tinker in the garage, to build something… anything, to contribute his skills in some way, shape or form.  All he can muster up some days is an hour here or there and then he’s done.  That frustrates him.  For me, I am sad.  I cannot imagine not being able to do the things I love day in and day out.  I weep inside – and sometimes those tears leak out now as well.

As I started my pondering this morning, I prayed to God to just hold me, hold us.  That led me to thinking about the Mother God persona which then led to a prayer I’d learned and sung many times over as a young child.  A prayer which actually referred to God as Father and Mother.  A prayer I’d forgotten until now. 

Father – Mother – God
Loving Me
Guard me when I sleep.
Guide my little feet
up to Thee.

Author:  Mary Baker Eddy, founder of Christian Science (which many people know is the religion I was raised in)

This caregiving journey is not always easy.  It’s a difficult, bumpy road.  There’ve been the times when I have stepped in as a nurse.  Learning to do things a wife should never have to do – but will do when it means better care for her husband.  It is a way of actively caring for someone.  When it brings relief, both parties feel better.

It is harder to deal with the emotional part of caregiving.  I find myself wondering if it is time to go back to counseling to help me through this next phase of our journey.  When I see George hold his belly with a look of discomfort on his face, I know he is concerned for what is growing inside.  Tomorrow we will find out what, if anything, the CT scan he had done last week shows.  We know that it never gives a true picture of the extent of the disease.  If it shows more tumor growth, do we multiply that times 5 or 10 for the mucin that it doesn’t show?  And then what?  Dr. B has pretty much said that he didn’t really care one way or the other if George had a CT scan as we go forward.  Further surgeries may or may not happen.  It all depends on the circumstances. 

To the outside world George is looking good.  For the outside world he hides the discomfort, plays down the fears.  For the insiders, you don’t have to be a rocket scientist to see what he is really, physically feeling.  And, for only a few, does he share his fears and, even then, I’m not sure he shows them everything. Not even to me sometimes.

Husband and wife - - patient and caregiver.  It’s a tricky road to be on.  Neither one of us wants to worry the other one (more than they already are) so are careful with the words we say.  Yet there is so much more to say.  Becke recently shared an article about this woman that wanted to get her first tattoo.  She shared that her husband had only been given a certain length of time due to cancer. She asked for input as to what that tattoo should be.   The tattoo she chose was simply, “more”. More time to spend with him, more words to share with him, more experiences, more of everything.  That’s what we all want.   More, just more.

Over the next few weeks I will be relinquishing my job duties at work.  So often people say to me “but you love your job”.  Interestingly, last year at this time I was doing 30 days of thankfulness and yesterdays “on this day a year ago” happened to be “I am thankful for my job – as it gives me respite from what is going on at home….”  It is true, I have loved my job.  I love my husband more.  He needs me now.  My physical presence gives him solace, comfort and strength.  I have been finding it difficult to spend a lot of time away from him.  I chose to go back to work four years ago – and now I choose to retire (again).  I can give George more of my time.

I know that it will be an adjustment for me to not have anywhere to go or anything to do.  I will need to work at creating a balance so that I still find some alone time or time to do things on my own.  Right now I feel guilty if I have any added events away from him because he already spends all day alone.  Perhaps the guilt will be far less when I am spending the majority of time with him, thus spending an hour or two or three away from him now and then won’t make me feel that way. 

It is scary going through this cancer journey.  Every day there seems to be some fear.  For both of us.  Will it be an okay day?  Will it be an uncomfortable day?  Is there something we could or should have done differently to make it better?  What will tomorrow bring?

So, this morning it is I who look to God as Mother.  Since my earthly mother is not here to hold me, cradle me, comfort me and tell me how much she loves me, I will visualize Mother God in her place.  Mother God, I will take all the holding you can give me right now – to carry me through this place and this time.  Amen.

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.