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. 

The C Word – August 2017 update

The more things change, the more they stay the same…. Or something like that. 

Ofttimes it feels as if while time marches ahead, it’s more of the same.  Same worries, more or less.  Just different time period.

George had a colonoscopy last week as the advice of his surgeon.  The hope was that it could tell us what is causing George to experience discomfort after every meal.  Perhaps there was a mechanical reason (adhesion issue) or perhaps there would be evidence of the colon closing in due to outside forces.

On the positive side, the adhesions look to be doing okay.  On the negative side, the found a “friable growth” – or something that should not be there.  A biopsy was taken and now we await to hear if it is something to be worried about or not.  Wait…. Wait… here we go again!

In just a few weeks he has his bi-annual scheduled CT scan.  And then we have to wait a few days for those results as well.

This makes us think of those days three years ago where we had tests and then had to wait for results.  The waiting can make one a little anxious.  That’s for sure. 

At the same time, we have some concerns about his mom.  Earlier this week it looked as though this would be the end of her time here on earth.  Today, as always, the energizer bunny struck again.  If only WE could be as resilient as she is!  She sure puts us on a roller coaster!  You think we’d be used to it by now!!

August is nearly done – it’s on to September!  Let’s keep our fingers crossed!!

The C Word – Three years later

August 9, 2014 – etched in our memory banks forever.  The day that set our lives down new paths – paths of unknowns – paths of fear – paths of change.

We have since discovered that many cancers are found during trips to emergency rooms for other ailments.  In that regard, we are similar to many others.  Yet, pseudomyxoma peritonei is a rare cancer – and that makes the journey very dissimilar to others. The medical issues that we deal with are familiar only to a handful of others, most notably colon cancer.  Not only are PMP survivors are typically dealing with loss of bowel/intestinal tract and also all or parts of other organs such as spleens, gall bladders, appendix.   

Let’s look at what’s new, how things have changed:

When first diagnosed, we knew nothing about this cancer.  Such a long word.  So little to find about it.  When your oncologist walks in with a google printout of PMP from a British website – you are terrified!!  That’s not exactly a comforting feeling.  Over the past thirty-six months we have learned a lot.  We are not experts – and we don’t know all the details about the different variations of appendix cancer.  We do know what many of the other patients may be feeling – and we empathize with those who’ve lost a myriad of internal organs that we always felt were important!  We’ve learned a lot – by asking questions of our own doctors – by reading and listening to others with disease.

Thirty-six months ago we were novices in our knowledge.  Today we are advocates, educators and mentors of appendix cancer.  We have surrounded ourselves with other survivors and caregivers.  We tell anyone who will listen about this rare cancer. 

Thirty-six months ago we were both employed.  We both left in the morning for our jobs.  George had been with his company for over 25 years.  I’d been at mine for just over a year. 

Today, we are both at home.  While George is not exactly retired - - he is tired.  A lot.  His stamina is low.  Some days he is able to get up and move about a lot – but most days he lasts just a few hours before he has to relegate himself to an easy chair.  I chose to retire at this point in order to reduce the stress of living with someone who has cancer – and to be able to react to his needs as the disease progresses. 

Thirty-six months ago George would stay busy in his spare time building things out in the garage.  Large projects in our backyard are evidence of his hard work and creativity – a pergola, arbor and wheelchair ramp.  Tedious, detailed projects such as a grandfather clock and a dulcimer now sit in others homes.  Unfinished, not even started, the wood for a double bench meant to go in the backyard sits in the garage – purchased precisely on the day that we received the cancer news.

Yet, we both manage to stay busy.  George has found some satisfaction helping PMP Pals Network with their newsletter and with their upcoming annual conference.  I’ve been working a lot on a fundraiser for ACPMP Research Foundation.  I’m also exercising my creative juices making handmade things to sell to raise money for PMP Pals Network. 

Thirty-six months ago we anticipated living a long life together.  “Grow Old Along With Me” was our wedding song back in 2002.  We had dreams of wonderful vacations.  We had dreams of spending our retired years being spontaneous, getting out of town on a whim.  Dreams of sitting and enjoying many more sunsets in our golden years.

Now, we are fairly certain that will not be our future.  Rather than “the best is yet to be”, the best of our times are mostly behind us.  While we can still make precious memories – and that is our goal – our best vacations are behind us, our moments of adventure are behind us.  Our lives are now contained within a two hour radius from home so as not to be too far from important doctors should any health issues crop us – because when they do, they can turn urgent quickly. 

Thirty-six months ago, George felt that family meant primarily the nuclear family – those closest to us in a biological way.  He didn’t spend much time with others.

Now, that definition has grown.  He realizes that relationship with others is very important.  We are both touched by the outpouring of love and kindness shown by others in the past few years.  People have stepped up to be beside us and help us walk through this journey.  It is important that he still have his “guy time” with some of his buddies and for me to also have some girl time.  In those moments we feel some normality. 

Thirty-six months - - Three years.  In the grand scheme of things it’s not very long.  Yet so much has happened in that period of time.  Three surgeries (two for the cancer and one for the broken neck), probably a dozen trips to the emergency room (only two for me after medication reactions), 5 hospital stays for a total of about 60 days and dozens of tests such as CT scans and blood work.  Where most people have fun events on their calendars, we have lab tests and scans on ours. 

We try to fill in the “in between times” (in between tests, surgeries, etc.) with impromptu things as much as possible.  A movie here and there.  Dining out (frequently).  Pop in on friends as we can.  Once this weekend’s celebration party for our fundraiser is complete, we hope to do a getaway. 

As much as we try not to let this “C” word define us, it does.  It permeates into nearly every decision we make.  It is still the elephant in the room, the cloud sitting over us just as it did three years ago.  No doubt about it, cancer sucks.  We’d give anything to go back in time – to before August 9, 2014.  

The C Word – Day 365 (One Year later) The Year In Review

A bit melancholy today.  I was driving home from the grocery store this afternoon and realized that about this time one year ago I was receiving the news, “We couldn’t get it all.”  I remember my heart dropping to the floor as Dr. B gave me this news with a somber expression of his own.  He felt it as much as I did.  I can’t imagine being in his shoes and having to deliver such news to family members. 

At last writing things were going pretty well.  And June finished out as well as any time in the past.  Then, July hit.  July is a different story.  The day before George’s birthday, he started feeling cramping. He immediately stopped eating and also drinking.  Pain meds needed.  The timing was unfortunate as we had just begun our week with the granddaughters.  As is my “modus operandi”, I swung into action to line up back up for the kids in the event we needed to do an ER trip.  This time I was able to reach my son-in-laws mom and sister to help out.  After a relatively quiet evening, George awoke on his birthday, the 9^th of July, asking for more pain meds.  Not a good sign.  About an hour after the kids went to be with their Aunt Kim, George passed out at home.  I called 9-1-1 immediately when that happened.  BP was very low.  Exhibited signs of dehydration (after all, even though it was 100 degrees out, George felt “comfortable”).  The paramedics pumped nearly a full bag of fluid in before he even reached the ER.  Note: They took their time getting there so it’s not like they did it in just a few minutes.)  We never heard how the blood panel was but after the CT scan the doctor came in and said they didn’t see a blockage.  (Yet, the release paperwork said he had a partial blockage though the radiologist did not say anything about it.  Confused?  I am.)

George spent the next few days on the couch while I had to pick up and do some door painting in order to stay ahead of the contractor.  I did this early in the morning or right after dropping the girls off at vacation Bible school.  Needless to say, I was kept pretty busy keeping them occupied and painting and, oh yes, working on the Silent Auction in bits and pieces during the week.  About mid-week George started feeling better which was good.  Staying hydrated seemed to do the trick. 

This past week has had its ups and downs, though.  On several occasions George has said to me, “I don’t know, it’s cramping again.”  At one point he even said, “Something’s not right, I don’t know what it is, but something’s is not right.”  Yesterday he came in and asked me to call Dr. B and see if he could get right in for an appointment.  Of course, doctors’ hours are different so we couldn’t get in until tomorrow.  He wants to ask questions about what he can do when these things happen besides go to the ER.  Is there something that he can take or do that will help alleviate the cramping he is getting more frequently?  We will ask.  Some sort of answer will hopefully make us feel better.  We’ve got another CT scan cued up for September as that would mark the 6-month mark from our “official” last scan.  Not sure we can count the ER ones. 

This month I’ve been working heavily on the Hair Today – Gone Tomorrow fundraiser.  It took a twist last month when a friend said she would give more money if I did NOT shave my head bald.  Still cut to donate, just not shave.  Since I had said on my initial website that I would shave my head if I raised $10k, I didn’t feel right about changing that decision so I have asked my donors to vote what they want me to do.  I will reveal their results on August 12 when I hold the celebration party/silent auction. 

Our contractor finished up work yesterday.  Aside from a few little things, we will be ready to move furniture very soon and get us moved to the main floor of the house.  This will be an adjustment for us!  Smaller bathroom being the biggest adjustment (wink, wink).  Yet it will be a relief for George not to have to climb stairs, especially when he’s not feeling well.

I am touched not only by the response to my online fundraiser but also the requests for donations.  Some of the people I’ve talked to at some of the local stores are also touched by cancer.  They share their story and I share mine.  Very few people are untouched by cancer these days.  They are interested in hearing about the rare cancer for which we speak. 

A dear friend of ours introduced us to one of his friends recently.  All he said is, “he’s missing a lot of body parts, too”.  When George called to talk to Wayne, he discovered that Wayne was diagnosed in 1996 and went to have his surgery with Dr. Sugarbaker, the pioneer of the CRS/HIPEC standard of care.  Since then Wayne has had 5 more surgeries.  But 21 years survival – wow, that’s very cool. 

Yes, sure this year has been a lot of ups and a lot of downs.  A lot of changes physically (for George anyway), changes in income (with Dawn leaving her job), changes emotionally as we both take the toll for what the disease does in our lives.  Yet, there are a few constants amidst these changes…. Our family is always there.  Our friends are always stepping up to the plate to help where they can… and Our GOD is always in our midst. We give thanks for these constants in our ever-changing household. 

The C Word – A New Battle Day 343 - Almost Normal? What?

Five weeks since I last did a posting here.  As I sat and looked at the date and number of days – last year at this time we had probably just decided on a surgery date which was put into place quickly as George was having small bowel obstruction (SBO) symptoms over the first few weeks in June.  We are coming up on the anniversary of the second surgery…. The one where things did not go as planned.  In August it will be three years since the initial diagnosis. 

The way our lives have changed over the past three years is so unimaginable.  Hardly a day goes by that it isn’t on our minds – sometimes just a little, other times a lot.  Dietary changes.  Habit changes.  Emotional changes.  For George, huge physical changes. 

I have learned not to plan too far out in the future because I don’t know what will happen between now and then.  We plan in shorter increments – days or perhaps a few weeks.  But always… always in the back of our minds is a backup plan should things not go according to our plan. 

In fact, at the end of May I had ordered tickets to see Celtic Women at a local theatre.  Two days before the concert we headed to the emergency room as George was experiencing pain.  The whole time we were there I was trying to figure out what to do with the tickets should he end up in the hospital again – (a) go with someone else or (b) give the tickets away.  Fortunately, this time, the ER was brief as whatever was going on cleared itself up in a few hours.  This time….

Unlike last June, this June has been going fairly well.  Well enough that George has even been helping with some of the home renovation project going on.  What started as a “simple plan” to re-convert the mother-in-law suite back into a master bedroom has turned into a major project.  George decided that all of the interior doors should be replaced, including all the closet doors in the 4 bedrooms.  That’s a total of 18 doors (4 sets of sliding doors for closets plus bedrooms, hall/linen and furnace closet and interior garage door).  A friend from church is doing the majority of the heavy lifting and work.  We are doing all the painting.  And, new carpet arrives at the end of this week.  With any luck, the work will be done by mid-July.

George has been pushing himself quite a bit to get things done. Most nights he is pretty tired – even exhausted.  His belly is not used to being in upright positions for long periods of time – so he feels more achy than usual.  Still watching what he eats.  Since the beginning of May he has lost another fifteen pounds because he cannot tolerate eating too much at a time.  That worries me some.  If he continues on a downward trend for much longer we will speak to the surgeon about options. 

While things are relatively calm, I have been busy crafting – mostly sewing.  I managed to get an Etsy site up and running to sell my homemade goods.  My tag name is CAREAngelsCreations.  I rather like my little slogan.  CARE stands for Cancer Awareness Research and Education. Our team name for the fundraiser is PMP CARE Angels.  Trying to raise money for both ACPMP Research Foundation and PMP Pals Network.

Throughout the month I’ve also been busy running an online fundraiser – and getting ready for the celebration party in August when we’ll have a Silent Auction and raffle prizes, etc.  All in all, it appears to be going pretty well.  Nothing unmanageable at this point.  In a few weeks I will need to start shaping things up for the party.  “Places to go and things to do!” 

Since we are busy into home renovations, we haven’t taken time to do a picnic or anything like that.  It was also pretty hot for a few days so we were just slug bugs.  Soon we will have the twins with us – a weekend coming up and then a week for VBS.  Fun times with the kids.  This year I get to have fun with them as well since I am not working. 

As we head into summer, we try to remain upbeat.  … but always are on alert for whatever is coming next.  At times I wish we could be like grandma – not remembering what happened five minutes ago and not concerned about whatever comes next.  Whenever we go to see her she is ecstatic to see us!  It’s as if she is seeing us for the first time in years – not days.  I think we need to live like that - - to love each moment we have with our loved ones and just enjoy the here and the now.  I think we often forget about that.  We become so immersed in our own little world that we forget to live and enjoy precious moments.  When cancer enters your world, you realize what’s important.  But when cancer enters your world, you are sucked into a world unto itself.  You flitter about between two different worlds sometimes – enjoy moments when you have the opportunity – yet immersed in the physical realm that is sometimes overwhelming you can think of nothing else. 

For right here – and right now – I am grateful that this month has been as close to normal as we’ve had in quite awhile.  Yet, I find myself holding my breath, waiting, just waiting, for the tides to turn yet again.  They will, I know they will.  I just don’t know when.  That’s probably the hardest part about living in the “C” world.  

The C Word – A New Battle Day 306 - Phew! Time to relax….

Well, George ended up being in the hospital for about 5 days total.  On release, he was instructed to maintain a clear liquid diet for a few days.  Good thing I had jello made up and also had made some vegetable broth recently.  Finally, on the Friday after release he contacted Dr. B and asked his opinion.  Only thing is, it differed from the MD at the hospital.  She said “low fiber(residue) and low fat.  He said complex carbs.  Totally the opposite as far as fiber!! 

So, given that we had started to convert to complex carbs and they (so far) aren’t having a negative affect, we are sticking with that for now.  It means reading a lot of labels… and eating at home more often.  Still not an exciting diet as we are very careful with what is eaten. 

We met with the new oncologist to go over post-hospital bloodwork.  It appears that the pancreatitis has really calmed down and we can consider it pretty much gone.  Hallelujah.  What caused it is still an anomaly.  They didn’t see any signs that the pancreas was damaged (relief).  So if we are careful, hopefully it won’t happen again…. Unless the backup was caused by an unseen (and maybe had cleared itself by the time we went to hospital) blockage.  That is the unknown here. 

Being in the hospital for 5 days and subsequently not eating too much for nearly a week to ten days took its toll on George’s already low stamina.  We are now back to walking around a block – or maybe two, at least 5 nights a week. 

During the down time I kept busy preparing for a planned yard sale which was held today. We normally don’t do yard sales because they are too much work for the money – preferring to just donate to Goodwill or similar place.  But we wanted to raise money for Appendix Cancer/PMP and add to our fundraising efforts.   It was heartwarming to have people just walk by and hand us money for this cancer fundraiser without making a purchase.  Or not take their change.  We did very well today!  And… to boot, we just bagged or boxed the leftovers and a man came over to take it away to use for another fundraiser for the local high school.  I didn’t need to load my car up and to that!  WOW!  Double blessing!  There are a few remaining items on the curb and now I’ve listed those for free on a couple of website. Hopefully they will disappear in the next couple of days.  Otherwise I will have to disassemble and throw away a little bit at a time. 

Now… I am just sitting and relaxing.  To say I am exhausted would be an understatement.  The temps this afternoon were in the high 80’s – (this morning, though warm, was pleasant and there was a breeze).  Add to that is the fact I’ve been up and running around since 6AM. 

So, now I kick more into retirement mode.  No big plans.  More crafting.  Learn how to use Etsy and sell my homemade goods (yard sales are not a great venue for that).  That or sign up for a table at a craft fair for the fall.  One day I’ll learn how to just sit and watch TV without my hands being occupied with something else… One day!  Ha!  Just not any time soon!

And maybe, just maybe, George and I can up and do something just for fun - - a picnic, a walk, a short drive…. This is our time!

The C Word – A New Battle Day 294 - Rough Start to Retirement

Well, this is not exactly what I had expected as my “start” to re-retirement.  It’s only been six days since my last posting – and things went downhill rather quickly.

I ended up getting a cold/upper respiratory issue which knocked me down for a few days.  (So much for getting outside and finishing any planting!).  Had no energy because I couldn’t take deep breaths.

Finally, Saturday I started feeling better and started doing some crafting upstairs.  Downstairs, George was starting to get bad abdominal cramps.  By 3:30 we were on our way to the emergency room to figure out what is going on.

Over the course of the past few days, we are not much farther ahead than when we began.  The CT scan did not show any blockages, but there was still much pain.  They noted some anomalies with the pancreas and wanted to investigate further.  They admitted George that night.  Fortunately, we ended up in the post-surgical ward which is a place we are very familiar with and where I can spend the night. 

The next morning we are told that George might have pancreatitis… or a bile stone… or a blockage near where the liver and pancreas empty into the small intestine.  Treatment, pain meds and IV fluids.  Later in the day we find out that pancreas and liver enzymes were extremely high (pancreas at 5000 where normal is 50-300).  Just keep pushing IV and morphine. 

This morning the enzymes had come down quite a bit – but still abnormally high.  Although the doctors were thinking along the lines of having an ERCP (endoscopy procedure), they later ruled that out.  At least for now. 

This evening we were visited by a GI doctor.  According to him, he doesn’t believe it pancreatitis at all.  He thinks perhaps there was a small blockage.  Somewhere…. But blockages don’t always show up on scans.

So, here we sit after two days in the hospital and expect to be here at least a day or two longer as we wait this out.  My husband appears to be an anomaly – no one knows what the problem is!  As I said, we don’t know much more today than we did two days ago.

We DO know that the amount of cramping episodes has decreased, but still exist.  We DO know that the plumbing works.  We are grateful that, while nauseas at times, that’s all that ever took place. We are grateful that we have nowhere else we need to be right now.  So just kicking back.  This is the first time since all of this started that I have not been torn between two places.  (work, grandma, home, kids, etc)  Not that we enjoy being here, of course, for no one likes to be in the hospital.

The plan is to perhaps start on a clear liquid diet tomorrow and test tolerance levels.  If that works okay, then on to soft foods.  At some point, we will get to go home.  Just not exactly sure when at this point. 

Hopefully, this will not be the trend for us!  Me sick… him sick… etc. etc. etc.  Just got retirement off to a rough start.  Things have GOT to go up from here… right?