The C Word - Me, Myself and I

Me – This is who everyone else sees me as.  They look at me and see a woman of faith, a strong woman, a courageous woman.  They see me as mom or wife or sister or aunt or grandma or friend.  They see me as creative.  They see me as someone who loves everyone (or almost everyone) she meets.  Someone to rise up and meet the challenges of the day.  They see me as someone who loves to organize things – except for organizing things in my own home which George will attest to.

Others are watching me.  I know this.  They wonder how I do it.  They may not consider themselves strong or courageous, yet I know many of them are. 

This is the me that I let others see.  Chin up, smile on, Go get ‘em girl.

Others see what I want them to see.

Myself – This is the me I am.  I am someone with a strong faith.  I do believe that God will take and use all the crappy stuff going on and use it for good.  I do believe that I can handle whatever life sends my way.  I may not like it.  But I’ll handle it.  I don’t consider myself strong or courageous – but those are likely components of faith. 

I am mom and wife and sister and grandma friend.  But these days I feel more like caregiver, trying my best to balance the needs of the ‘patient’ but still trying to maintain some sense of those other things.  Some days I am more successful than other at that. 

I am creative.  My sewing room is my haven when I can get to it.  Since I don’t have an office to go to, this is the next best thing.  I only have one problem  - there aren’t enough hours in the day for me to get all my projects done!  I tend to figure out what I want to do and work on that one project until it’s done and then figure out what to do next.  I put on an audio book or music and go upstairs to just be and do what I want for periods of time. 

I have been told I am WYSIWYG – “wizzywig”.  What you see is what you get.  And that, for the most part is true.  Yet, I do not show my whole self to everyone. 

I – The “I” is hard.  “I” feels selfish and self-serving.  But “I” is reality. 

I am angry that cancer has entered our home and has taken it hostage.  No matter what we do, it is ALWAYS there, lurking in the shadow or stomping it’s ugly self on top of us.  It affects every decision, every plan we make.  It has done this for three and a half years.  No matter what we think or do, “it” is on our minds. 

I hate that it interferes with absolutely everything.  Every plan has to have a back up plan.  A “just in case” plan.  I have to be able to cancel things at a moment’s notice.  I have always been very flexible in regards to making plans – but this disease truly tests that ability. 

I hate that it has robbed us.  It has taken George’s physical stamina to do all the things he loves to do.  He no longer does woodwork.  He no longer does yard maintenance.  He is no longer able to do so many of the household repairs and tasks that he used to do.  He can’t go out and do anything that requires a lot of walking or being on your feet.  He is relegated to his recliner with his iPad in tow for the majority of his days.  

It has robbed us of vacations and holidays.  A year ago, when I planned on leaving work, the hope was that we would be able to just get away for a day or a night here and there and get out on mini-adventures.  That never came to fruition and, as time goes on, our world continues to shrink.  It has taken away the golden years we were supposed to be able to enjoy and have fun.  Our wedding song was “Grow Old Along With Me” … the best is yet to be.  We’ve had 15 years together – but the last three have been anything but the best.  And the grow old along to me, sadly, is not likely to be.  I hate cancer!

I hate that as we make medical/health insurance plans and plans for taking pension or social security, that the one thing on George’s mind is that I will be financially okay when he is no longer here. Rather than think we can make plans to do things together – the plan is for me to be alone… again.  Four years ago we were looking at whether or not George could afford to retire – would the two of us have enough to get us through to the ends of our life.  Now, instead of “for two” it is “for one”.  Don’t get me wrong, I am glad that I should be able to be financially stable (unless something hugely traumatic healthwise happens)… but, just as with my first widowhood, having money in hand does not take away the sting of losing a spouse.  Nothing can replace that. 

I fear what lies ahead for George, for us, for the family.  Having access to knowledge of what shape this cancer can take, we are all to aware of the possibilities of what is coming down the road.  We don’t know when and we don’t know exactly what will happen as every case is different.  But, from what I’ve seen, it’s not an easy road ahead.  What we are dealing with right now in this moment is a cake walk compared to what’s ahead. 

I fear how the kids and grandkids will handle whatever lies ahead.  Will I have the strength and courage to not only comfort George but also the family. 

The “me, myself and I” live in conflict with one another.  The “We” that this trio makes, creates a roller coaster of highs and lows, twists and turns.  “Myself” is the middle man, trying to keep things at an even keel as much as is possible.  As I said, some days are easier than others.  “I”  rears its’ head as it did last night, creating havoc and causing insomnia.  It doesn’t happen often, but it does happen.

I cannot and will not let “I” have the last word.  I allow myself a short-lived pity party – and then I go back to being “myself” – for faith is what grounds me.  Faith will define me and serve a much better purpose. 

The C Word - New Year 2018

In retrospect, at this time last year – we didn’t know if we’d experienced our last holidays together in 2017.  There was so much fear going into the new year.  A “doom and gloom” pall cast over us as we began the new year.

Somehow we managed to get through the year.  The first half of the year there was much uncertainty.  Then, after three trips to the ER in about 9 weeks (May – July), George was given a prescription that helps process food in the stomach.  And we finished out 2017 with no more trips for the ER (for George, LOL).

Some favorite memories from 2017:

Just about anytime we spend with the twins – VBS Week, Christmas week, in between times.  George, aka Poppy, loves to take them to see the “queen” (Dairy Queen) although lately only one or the other prefers to go there at a time.  The girls say and do the funniest things that make us smile and laugh. 

Our walks around the block – sometimes having serious conversations – and other times not saying much at all but just walking quietly in the moment.  Grateful that we can take walks together, hand in hand.

Doing a double fundraiser over a few months time, raising nearly $20,000 for appendix cancer organizations.  Having the family come together to pull off the final event in August.

For me, getting back into crafting and enjoying it.  I am sure that knowing I am in the house is comfort to George.  My sewing room is upstairs right behind his chair – so I am able to peek down periodically to see if he’s okay. 

Our weekend in Monterey – one of only two weekends we went anywhere together this year (the other was a weekend in Roseville).  Glad to see other people and just get out of the house for a short period of time.

An enjoyable Thanksgiving and Christmas meal made totally by George.  And time around the table as a family for both holidays.  Precious moments with our kids and grandkids.

A lovely New Years Eve – spent with our best friends.  Something we’ve done for over fifteen years I think! 

As we head into 2018, I do have some resolutions.  Re-resolutions of sorts, but something I need to take seriously as I’ve had a few health issues in 2017.  I do need to eat better and get more nutritional foods into me – so need to concentrate on that.  I also need to get up and move more often so need to find some activities that will keep me strong and healthy.  Because if I’m not healthy, I won’t be of much help to George when he needs it. 

My sister and I now write emails to each other every day to sort of “download” our days.  We tell what we’ve done during the day and what we’ve eaten.  Neither one of us is perfect, but by taking the time to tell each other these things, it makes us more aware of the things we can do to improve ourselves.  And we can point out some of the shortcomings and offer suggestions.  One of the things I’m learning to do is to not beat myself up on days I’ve eaten nothing but carbs or not moved at all.  I’m going to have those days.  And I’m going to have days where for reasons beyond my control, I have to give up control.  That’s my current normal. 

I also hope to be able to do some mini-travel on my own.  Around here mostly.  But organizing a “girls weekend” with my daughters and sisters-in-law a few hours away. Going to Roseville to see the twins perform.  Hoping also that I can do a weekend getaway to Chicago in June to attend a wedding.  Little things.  All dependent on how George is doing.

I realize that things are pretty fluid where cancer is concerned, and I am incredibly grateful that I don’t have to work so I can respond to situations.  There was only 22 months between his first two surgeries when things didn’t go so well.  We are approaching that same mark in the first half of this year.  George can tell things are changing.  In fact, the past few days he’s had some issues.  We don’t know what our options will be if, in fact, the same issues arise as the last time.  “Watch and Wait”. 

Which is why we feel incredible blessed that we got another Valentine’s Day – another anniversary – another Thanksgiving and Christmas.  Another New Year.  Thanks to a wonderful medical team, we have been given the gift of time!  And we pray that they continue to work miracles in 2018!

The C Word - Immunotherapy

In the world of cancer treatments, some have more available options than others.  Many will respond to chemotherapy and/or radiation treatments.  Cancers of lymph nodes or blood streams are eligible for these treatments.

In the world of PMP cancer, the treatments are very limited.  There are four types of Appendix Cancer.  Higher grade or fast moving ones may respond to chemotherapy.  Radiation is never an option as you cannot radiate a whole belly and that’s where the cancer typically resides.  George’s cancer is of the “slow growing” variety - - which you think would be good and on some level is.  But it also means that chemotherapy will not work as the cancer cells look so similar to normal cells (hence the “pseudo” part of the name) that the chemo will not know which cells to go after.

In October 2015 we were told (again), that chemotherapy is not an option.  The doctor had said it could speed up the “end” versus prolong it as it would make George so sick and compromise his immune system that when he needed to fight the cancer, he wouldn’t be able to. 

Forever the optimist, George keeps his eyes peeled for other options.  He recently learned of a clinical trial for “any rare cancer” using immunotherapy drugs.  He sent an inquiry to his oncologist to find out if he would qualify for this trial as it is hard to know exactly what the parameters are. 

I’ve been more of the skeptic in this.  When I hear that drugs will make him sick, the last thing I want is that for him – and for me to have to deal with as well.  I’ve stopped following the PMP facebook group on a regular basis because I was watching so many people we’ve been following die – and many of them after having endured months or more of chemo treatments.  It was becoming very difficult for me to maintain my own upbeat sense - so though I check it on occasion, I no longer get notifications about how people are doing.  I need to do this for my own sanity. 

I hate that I’m the skeptic – because it sounds like I’ve given up all hope.  That’s not entirely true.  I try my best to be upbeat in all of this.  But every time George has a twinge of pain or discomfort, it reminds me (and him) that the cancer has not stopped its growing phase.  And, though he’s managed to stay out of the ER for over five months (knock on wood), it’s because we’ve been able, thus far, to self-manage the symptoms.  At some point this may change – but we feel like we’ve dodged a bullet for now.  The C word is never far from our thoughts no matter what distractions we find throughout the day. 

A year ago we were not sure if George would be here by the end of 2017.  The prognosis after the last surgery was bad.  Only 20 months between first and second surgery when there was so much more mucin than we figured on.  We are now going on 17 months since the second surgery.  We feel like we are biding our time waiting for the shoe to drop.  For our world to get rocked again. 

So, as I said, George found out about this clinical trial.  We met with the oncologist on Friday afternoon.  He hadn’t yet heard back from the local study lead but, as he perused online while we sat with him he discovered that the local contact was someone he knew.  He excused himself from the room while he put in a call to this doctor.  He returned to the room and explained in as simple terms as possible the parameters.  To be considered for this trial, the patient must have gone through all possible “standard of care” treatments for their cancer.  For PMP, that means George would first have to go through chemotherapy treatments as this is a secondary “standard of care” though not a great one.  If we had done that, he could have been considered for this Phase II trial which involves giving the two drugs to patients to see if it has any affect.  He also said that this particular combination is “quite lethal” and will make patients quite sick.  (The definition of immunotherapy is: the "treatment of disease by inducing, enhancing, or suppressing an immune response". Immunotherapies designed to elicit or amplify an immune response are classified as activation immunotherapies, while immunotherapies that reduce or suppress are classified as suppression immunotherapies.)

In other words, George is not a candidate for immunotherapy. We left feeling somewhat discouraged that this not an option for us.

On the other hand, we give thanks that George is here for another Christmas and is feeling well enough to do things with the twins the week afterward.  (We hold our breath that he makes it through the week as the last time we had them he ended up in the ER.)

Chemo – not an option

Immunotherapy – not an option

We have limited options available to us – and this is why we “fight” and why we believe in fundraising for ACPMP Research Foundation (They are able to grant 5 - $50,000 grants this year thanks to donations and we are so thrilled we played a huge role in that this year, having raised $19,000). 

The C Word - A conflict of seasons

A Conflict of Seasons

Growing up on the East Coast, the seasons were typically fairly delineated by what unfolded with nature.  Green grass and flowers in the spring, hotter weather in the summer, leaves changing colors and then falling in autumn, dead grass and snow covered lawns and streets plus cold in the winter months.

Here on the West Coast, things are a little less easy to tell.  We have more like three seasons rather than four and, even then, they are not always easy to figure out.

As I took a walk today, December 8, 2017… I marveled at the spring like flowers still blooming, the fall foliage of the trees and yet, some trees now naked having lost them to the ground already. The calendar says that we are at the end of “autumn” and headed into winter in just two weeks time.  You can tell that it’s winter by the Christmas decorations that have sprung up.  Here, in California, we get more creative with decorating.  Ornaments hanging from palm trees and fruit trees.  Some Christmas decorations still have a hint of fall with pumpkins still on porches.  Even at my house.  Yes, it’s confusing.  What season is it, exactly?

Our human lives also have “seasons”.  The Spring of our lives from birth to perhaps our twenties – when we are still exploring and learning so much about ourselves and others.  Our Summer months in our thirties and forties when we are still vibrant and alive and yet we are seasoned enough to make it through thetumultous years of teenage children and aging parents and all of the other complexities that heat up our lives.  We welcome Autumn in our fifties, sixties and maybe even seventies as we prepare to shed ourselves of our jobs and, in most cases, have let our children grow and go off on their own leaving us with less burdens than before.  Our Winter years are for sitting more often, or watching out the windows of our lives and enjoying the reward of a life well lived. 

We are conflicted – our minds tell us we are still twenty while our bodies often don’t lie about our age!  How we hate that!  George and I (and many of our friends), lament the fact that our minds tell us that we can still do all the physical things of our “spring” – yet attempts to do so often fall short – sometimes far short and remind us that it is autumn.  We don’t want to give up and give in to that – not yet anyway.  And so we fight body and mind, again and again.  We struggle with that.  George struggles with that even more since his body is determined to remind him daily that he is well into his Autumn years.  Winter will come in it’s due time.  Just..... not.... yet.... please.

Here are photos from a fall-nearly-winter-day in California:

Spring and summer (flowers):

Late summer and early fall – leaves changing colors:

Late fall – trees drop their leaves

Winter – Christmas arrives

The C Word – October 18, 2017 - Mixed Thoughts

Ever have days when there are so many thoughts just running around in your head?  Yep, have one of those today.

Pensive thoughts:  I recently made some blankets for two great-nephews and their mom.  She had requested a “replacement blanket” for her younger son.  She said, “You made him a blanket with monkeys on it and he carried it with him everywhere but I kept cutting off pieces as it wore out until none was left.  He asked me for a new one and said it had to be handmade because then it was filled with love.”  Truth be told, I don’t remember making that blanket.  I make blankets all the time, some for specific people and some not.  One made eight years ago, I don’t remember.  I asked him what sorts of things he liked and she gave me a few ideas.

Off to the fabric store I went.  Perusing all the bolts to find just the right one, I found one I thought would work.  Then I decided that I should make one for the older great-nephew – he is named after Mike after all.  I’d had a brief exchange with his mom to ask how he was doing as I was concerned by some of the postings I had seen.  She said he was fine and was just a busy teenager.  So, not knowing what things he liked I walked down the aisle of fabrics.  One with wolves called out to me and I took it but continued looking.  I almost put it back but ended up going with my first impulse.

Before sending the blankets, I typed up notes for the boys.  The one for Michael I decided to include some thoughts on his uncle.  I wrote, “.  I was somehow drawn to this fabric of wolves.  I wanted to choose something special for you.  As I was making it, I thought of your Uncle Mike, for whom you were named.  He was like a wolf in some ways.  He was fiercely protective of his family.  He travelled in packs.  He was strong.  He adapted to climate in the way a wolf does from season to season.”  I then went on to describe some of the things that made Mike “Mike”. 

Two days later I received an excited message from Cody with pictures of the younger nephew, Blake, with his new blanket.  She told me that the other blanket would be given to Michael when she saw him – and then she confided some problems that he had been dealing with.  The next morning she told me that Blake had the best night sleep with no night terrors thanks to the blanket I’d sent.  Apparently he’d been having problems after having to give up the last blanket.  A few days later I received a note and picture with Michael and his new blanket.  He asked “How did she know I liked wolves?”  I told her that I did not know and that Uncle Mike must have been speaking to me at the fabric store as I kept going back to the wolf fabric. 

Lesson learned:  Listen to your gut instinct.  I have a feeling that my description and comparison of the fabric in regards to Uncle Mike may be very helpful to his namesake.  I pray that whatever problems he is having that he have the same tenacity that Mike had when it comes to determining his future.  Also, live your life as role models.  You never know when you are making an impact on someone else.  I certainly had no idea that a simple thing I had done years ago had made a significant impact on someone!

Sad thoughts: Some of the postings coming through our PMP group are informing the group that their cancer has returned and they are having huge issues right now.  And some are coming through to let us know that their loved one has lost the fight after three, four, five or more years of struggling to survive.  My heart breaks when I read those.  Some I have followed and they have been seeking chemo or surgery alternatives to gain a stronghold.  Yet their disease persists.  Others I don’t recall seeing their stories, but when they post tributes you feel as though you know them.  We all wish we could reach out and hug and hold these people – these people who are part of our lives because of this horrible “C” word.

Happy thoughts:  At the same time there are those reporting that their tests or scans are showing “clear”, or NED (no evidence of disease).  They are excited but also apprehensive as their doctors tell them that they don’t need scans as regularly as before (when you are used to doing them every 3-6 months and all of a sudden that gets lengthened, you are scared that the disease will come back and you won’t catch it on time).  We are happy for those people yet we don’t know what that feels like – as we’ve never had the opportunity to be declared NED. 

Lesson learned:  Appreciate each moment we have, happy or sad.  Acknowledge them.  It’s all part of life.  Pray for everyone!

Creative thoughts:    I am loving being creative with my totes, blankets, and so on.  So many things I want to try to make!  And I’ve been getting donations of jeans, jean pockets, other clothing, etc.  So many things and so little time, LOL!  I try to start and/or complete at least one thing a day.  My sewing room has become my “happy room” as I get to create some fun projects with the ultimate goal of raising money for cancer organizations!

Lesson learned:  Have fun, find your passion!!

Thankful thoughts:  I am thankful for family and friends – for time spent together.  I am thankful that we occasionally reach out to our church shut-ins and especially grateful that we acted on visiting a couple of them in recent months – not knowing that their passing would be just weeks later.  We are glad we had the opportunity to spend time with them.  I am thankful that we’ve had time to spend with close friends recently, sitting and catching up.  And thankful that George has been relatively stable in recent weeks so that we’ve been able to get out and about.  We had a good weekend away at the PMP conference.  We were able to spend a couple of hours each day getting out and relaxing and, while it wasn’t the normal week long vacation we’ve done in the past, it was enough time to give ourselves a little morale boost.   

Lessons learned:  Do not wait until tomorrow to spend time with loved ones.  We do not know when the end is near.  Take the time to pick up the phone or hop in the car to call on others.  Have no regrets!  Appreciate little moments spent together.

Yes, today ran the gamut of emotions.  I am grateful that I can write them down as that gives me the opportunity to acknowledge them, appreciate them, and deal with them as needed.  They become a little less jumbled when I can do this!

 

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.