The C Word – Day 1,869

It sounds like such a big number, doesn’t it? 1,869.  That’s how many days it has been since I started this blog on August 9, 2014.  In the world of cancer, that is a huge number.  Many Stage IV patients die within weeks or months of diagnosis.  We’ve had five years.  They’ve been five long years of incredible twists and turns, of bottomless lows and mountaintop highs. 

And now, here we are, getting ready for the final days when we shall remain here while George gets his angel wings. 

It is surreal. To think that within perhaps days that George won’t be among us.  That he won’t have the TV on non-stop during the day tuned into CNN or REELZ TV, or watching The View and The Talk… even enjoying watching my one soap, The Young and The Restless. 

I won’t be hearing, “Honey, can I have something to eat?”,  “Can you fill up my water cup?”, “Thank you for taking care of me today.” 

I have been longing to have my fully-functioning husband back for years now, but instead he became more and more incapacitate.  This week he has stopped being able to write with a pen.  That horrified me! The tremors and shaking becoming more pronounced.  Needing a hand to hold to stand up, to walk and, at night, to just hold and give him a sense of calm and peace. 

All our children are here (well, mostly).  The grandkids are here until Saturday morning.  Chris and Mandy will take their kids back to Roseville – leaving just our daughters here for however long this takes.  So we can be together when George crosses over. 

Yesterday was a busy day not only with kids arriving but many visitors…. Too many actually.  George was a bit overwhelmed.  Today we will have several hospice people coming in – the nurse, maybe the hospice doctor, maybe a home health aide to show me how to give a proper sponge bath.  Friends, Larry, Jill & Joe are on the schedule.  Tomorrow the last of the visitors I will allow will come, Hong and Jose.  After that, for our sake, we need to limit visitors to only family (and those friends who are family to us). 

This is our sacred time.  Our time to be present in the moment, becoming aware of the signs that tell us George is ready to leave.  Ready to see Jesus and live on in eternity.  It is hard for us to let go of his earthly body.  Really hard.  Hard because my “book” (blog) will come to an end.  Silenced by the one thing that was necessary to keep it going. 

The C Word – Never Prepared

Tuesday night, Sept 24:  Five years – this cancer journey is five years old.  In August we “celebrated” five years since diagnosis.  On the 30^th of September it will be five years since his first mega-surgery.

We’ve learned that the average life span of someone with PMP is five years.  In one sense, we’ve beaten those odds as we know that the cancer likely started in 2007.  But the clock really began ticking on August 9, 2014 and on September 30, 2014.

We have read enough information, other people’s posts, to know that the odds were stacked against us.  We have fought this battle for so long. 

I have said that I have been saying goodbye to George for a long time.  Goodbye each time he is unable to do something he used to love…. Playing with his grandchildren…. Making things out of wood… playing golf… and more recently going out for a bite to eat.  As each of those things that make life special started being taken from him it was a stab in the back for him.  Little by little he has lost his identity. 

Similar to losing his mom who had Alzheimer’s, this has been a long good-bye. 

Up to this point I have done a good job of holding it together.  I’ve had moments of tears in the silence of my bed at night.  But I’ve tried to remain positive and encouraging, tried to keep my eyes forward.  Not exactly denying what was coming  - although for periods of time when George was feeling well that we didn’t feel as threatened. 

But no matter how much you prepare, no matter how much you think you are prepared – the simple truth is…. You are NEVER prepared for the end. 

This past week has been difficult.  Although I had a plan for making a lot of different things for the craft show next month, I slowly removed some things from that list.  It was self-imposed pressure and I didn’t need that stress.  I reduced my scope of projects – and then reduced it yet again.  As George has been feeling less and less well, I am compelled to be by his side as much as possible.  I am certain that I have enough things to sell at this point.  Time to stop.  Time to be in the moment. 

In the past two days George has gotten suddenly weaker, suddenly more tired.  Yet, in a surprising ‘move’, his peg drain started to flow after not putting out anything for nearly two weeks.  And it flowed a lot.  I noticed, however, that the odor and scent of the drain fluid was not normal.  The other ‘new’ thing is that George is needing pain meds and nausea meds more frequently than before.  He keeps saying he is just not feeling well. 

I look at him and I can see it all in his face. The fatigue. The lack of energy. The discomfort.  None of this is normal.  What is going on?

This evening I decided to text our surgeon doctor and update him on the past few days – the drain issue, the fatigue, the discomfort and nausea.  And then I asked something I’ve never done before – I asked him “How were George’s labs this week?”  Within a half hour my phone range.  It was Dr. B.  He called to tell me that George is having kidney failure.  One of the creatinine/kidney tests showed an elevated number as compared to all prior tests.  He says he would like to have another test done soon so he can get a more accurate picture of what is going on and see the rate of progression.  While there is an in-hospital treatment to help drain the kidneys, the fact that the blockage is likely caused by a tumor means that it really wouldn’t help.  Thus, he is not recommending this.

He has now said that we should soon decide when to stop TPN.  If the kidneys are failing, he’s going to die relatively soon and there is no need to continue TPN at that point. 

As I write this, I am in bed with George who has been sleeping soundly for hours now.  He has no idea what I have learned, and I will not wake him to tell him.  He needs his sleep.  We will deal with this in the morning.

We now have a time frame for him – and it is a short one.  I cry.  I am in shock.  While I knew this was coming, I thought I was prepared…. I am not.  My only prayer at this point is that we keep him comfortable for whatever time he has left – and that the family has a chance to say goodbye. 

Wednesday, Sept 25:

George awoke in the wee hours of the morning.  Since we were both awake, I decided to tell him what Dr. Bastidas had said.  I’m sure he heard me – but he had almost no reaction.  And promptly fell back to sleep. 

When he got up this morning and I queried if he remembered what I said last night, he said, “If I take TPN off I die.”  I told him that the kidney failure will kill him before the lack of TPN. Other than that he didn’t say much else.

How quickly things have changed.  Today he can barely stand on his two feet, requiring assistance to walk around the house.  He can’t write his name legibly.  He can’t remember that September is the 9^th month, not the 10^th.  This is part of the dying process.

It takes a lot of effort to die.  His body is transitioning even as I speak.  There are several signs for when death is a week or two away – and he is beginning to exhibit some of them.  His hands clutch and unclutch the blanket on his lap.  His feet stir as if going somewhere.  His lips move as if he is talking to someone.  And, he likely is.  There are plenty who have gone before him.  Waiting for him.  When I go in to check on him, he tells me he has been talking to me.  I told him to tell me when he starts talking to his mom, brother or dad. 

But am I truly ready to say goodbye? After all, I’ve been preparing for this for five years.  It should be a piece of cake.  But it’s not.  It is just as hard as losing someone quickly and tragically as I have experienced already.  I may not grieve in the same way as before – but I will grieve.  I will miss having someone who knows me so well.  Someone who has loved me more than anyone else – except maybe my kids and grandkids and my mom.  But they don’t count.  They didn’t have a choice…  He did. 

Up until recently, George wasn’t ready either.  He wasn’t ready to leave his loved ones behind.  He wasn’t ready to let go of his earthly treasures and his earthly body.  Looking at him right now, I think he is on his way to being ready to leave.  His body is tired and weak.  He has fought so hard to get to where he is today.  It’s time for us to get ready to say goodbye and God speed. 

The pain is unbelievable.  I’m not prepared to let him go – but I know he must go. 

The C Word – August 2019 in Review

Where oh where has the time gone?  For me I have been absolutely swamped with sewing to get ready for an October show.  It’s 6 weeks away and I still have tons to do.  I got sidetracked by a sweet lady who has given me thousands of dollars of brand new fabric.  Much more than I will use so I set up for a sale today.  That diverted about 10+ hours of my time that I needed to work on bowl cozies!  Oh well – back to that tomorrow. 

This has been a mixed bag for us where George is concerned.  He is beginning to exhibit more symptoms than ever before.  Much more fatigue.  When he sleeps he sleeps very soundly, not waking to knocks on the door or phones ringing.  More aches and pains which means more Tylenol and, in some cases, Norco.   He asked to have his antidepressant increased and that is helping slightly I think.  We’ve needed to add back in a few more meds.  He was down to 9 pills a day and now is up to 11 or 12.  That number is due to increase shortly.

His first six months on hospice is up in just a few weeks so we had a visit from the nurse practitioner, Jodie.  She is the one who evaluates for Medicare. She was very nice and informative, had a great sense of humor.  She spent nearly 90 minutes here.  She feels that the extra fluid buildup in George’s belly area may be what is causing George to get dizzy upon standing and also influencing how he feels overall.  She said there is a steroid that he can take that may reduce the fluid buildup as well as some of the gunk that may be adhering to the tumors (it will not shrink the tumors). 

By now George believes that the two largest tumors are (a) the size of a softball and (b) the size of a golf ball.  That is so hard to imagine, isn’t it? 

Of course, all of this makes the mind go crazy.  Imagining what is coming.  Starting to believe things are changing for the worse.  Frightened that it may be closer than ever before. 

We continue to lean on our faith and the fact that when it is time George will go through the narrow door to the heavenly realms.  Trying to prepare the way can sometimes be daunting.  But prepare we must. 

The C Word – Day 1,825

This is a day we never thought we would arrive at.  One thousand, eight hundred and twenty-five days.  Five years.  Five very long years.

As George says, “It’s 5 years from when we first heard that word – Cancer.  But I’ve been fighting it for 12 years since a scan back in 2007 actually showed what was the first ‘seed’, the first tumor that went unnoticed and undiagnosed for seven years.” 

We’ve had quite a roller coaster for the past five years… as husband and wife… as survivor/patient and caregiver… as advocates and educators… as a family. 

We are still amazed at the people who have stepped up or showed up for us when we’ve needed it.  For the many who tell us we are in their daily prayers.  Although cards have slowed down, there were some amazing surprises in the early days of learning this diagnosis. 

George has a few great friends who call to chat regularly.  A couple will pop by for visits a few times a month. 

I would be remiss if I didn’t give a huge shout out to Dr. Bastidas.  Without his knowledge and skillful hands, George would not be here today.  He is more than a surgeon, he is a friend.

We have an amazing group of daughters who have learned to be flexible with family plans and who take the time to check in now and then. 

While it can be hard to stay connected during times of isolation, these things help us to stay connected on some level to the greater world.  Our own world has gotten so little that those little ‘trips’ to escape via talking and visiting with other are crucial to our survival.  A chance to get outside of the bubble we seem to be in. 

The past five years have seen George progress slowly on this journey.  Once a robust, vibrant, healthy and active man, now he has so little energy and stamina that short jaunts out of the house turn into exhaustion when we get home.  The garage sits pretty much as it did five years ago although there was a period of time that he created one or two things out there.  The wood that he purchased on that fateful diagnosis day still sits in various parts of the garage – the plans for the dual Adirondack chair still sitting on a clipboard.  A plan gone awry, but the memory is still there. 

We miss what was supposed to be, what might have been.  The hope we had that once Mom was gone and George was retired would be spent doing some traveling or building or making new memories are gone, but not forgotten.  We yearn for that.  This is not how we anticipated our senior years to be.

Our wedding song, “Grow Old Along With Me, the Best is Yet to Be” cut short.  This is certainly not the best by any stretch of the imagination.  The past five years have been grueling.  They have tested our relationship.  We still stand together and we still stand strong.  But what we wouldn’t give for just another taste of freedom from cancer, from pain, from certain death.  What we wouldn’t give to have the past five years erased, perhaps have a ‘do-over’. 

We tell people to not take life for granted.  We warn them not to waste time in anger or hatred, in fear and wrath. 

Spend the precious time you have here on earth spewing love and hugs, patience, tolerance, and good will.  Leave a legacy of honesty and integrity, of hope and peace.  Leave this place on earth better than when you arrived if possible. 

Happy Survivorsary, George!

The C Word – July Wrap Up

This month has had it’s ups and downs.  Dealing not only with physical issues but mental and emotional ones as well.  Toss in a little family drama and home repairs.  It’s been quite a month.

George has had problems with his belly not properly draining for a good portion of the month.  Not sure what is going on.  He asks for the drain to be put on frequently because he is feeling full or bloated, yet nothing comes out.  I think when he has a buildup, it creates other issues for him such as the need to use the bathroom frequently. 

He’s exhausted more and more with little energy to expend.  He’ll fall asleep at least twice a day for one or two hours.  He won’t hear anything going on during that time. 

His fistula is beginning to put out more mucin and such.  The hole might even be wider than before. 

Mentally he is having a hard time with all of this.  It is worrisome.  Wondering what is going on and the mind goes to dark places.

During the month there has been some family drama going on – I think we’ve resolved these things.

Home issues have arisen.  Another problem with the garage door.  I thought it might be something covered under warranty with the new spring we had installed in early June, so I called the same company.  The tech came out and spent 45 minutes trying to figure out why the door wouldn’t shut completely.  I asked if it could be something with the new spring and he said no.  He was not able to fix it and said “maybe the door is broken inside so when the door is closing the energy is not properly dispersing…”  I called another company out to fix it and their tech figured out the problem within 30 seconds and had the door fixed in two minutes! AND it had to do with the new spring which needed an adjustment!  Arghhh!!

We also found out that our house phone was not working when someone said they’d tried to call but no one answered.  I looked at the handset and noticed a “Line in use” display.  This had happened before. I went around and unplugged/replugged phones and couldn’t get that message to clear.  I eventually got around to calling AT&T and the earliest schedule time was a week later.  The tech found an issue at the box (a block away) and fixed the lines.  We have absolutely no idea how long the phones had not been working (as we don’t use the land line often) but estimate the line went perhaps as long ago as June 1.  (Should have noticed that we weren’t getting robocalls!!)  Interestingly within a few hours the phone rang.  It was someone from hospice which puzzles me as I have told them that my cell should be the default phone number!  Of course, since then we’ve gotten a robocall – though not as much as before so maybe the two months of no answer got our number removed – at least for the short term.

On the upside, we had visits from old friends this month.  My former pastor, James, and his wife came for a visit when they were in the area for a wedding (he lives in Arizona now).  Steve and Vernita, who moved to Washington last December, also came for a visit while they were in town.  Stan, a long-time friend of George’s, paid a visit.  George had some phone calls from former co-workers.  I was able to go out for a lunch and a dinner with friends as well as take in a movie with Cathy.  Earlier in the month (or maybe it was in June), we got a chance to see our friends Rob and Angie who were visiting from Tennessee.  I have to remember to be thankful for these things. 

I am looking forward to my brother and sister-in-law coming from Thailand for a visit in August.  Since I have a list of projects on my to-do list, I am going to enlist help in getting one or two things checked off my list with their help.  Planning a family barbecue with the kids.  I feel bad for George because there is not a thing we can barbecue that he can eat.  He used to be the best grill cooker, making tasty steaks and chicken.  It’s been a very long time since he’s had a burger and longer still since he had steak.

As we move into August, we are all too aware that things are changing.  He believes one of the tumors is now the size of a baseball.  He feels the tumor burden more and more.  He is more and more tired.  These will continue to get worse.  We do our best to enjoy moments.  Sometimes it’s when I’m changing his dressings and we find ourselves laughing about something we heard or saw – or we just get plain silly.  Sometimes it’s when we are settling in for the night. I want to remember these moments – even if I don’t remember exactly what we were laughing about. 

The C Word - Another Birthday

Happy Birthday, George!  

Today you are 66 years old – and officially on Social Security!  Back in 2014 we were not sure you would make it to this day… but you did.  Through tenacity and sheer will power, you have fought hard to get to this point.

You and I have been together for 28% of your life…. Wow, right?  What does that feel like to know that you’ve spent 28% of your life living with love such as ours?  We may have met in our mid-life span – but we have managed to make it a good long while!

While this is not what you expected in your retirement (both after stopping work and now at official social security age), we have to appreciate the things that we have managed to do up until 2014. 

Two trips to Hawaii
Vancouver and Victoria, BC
Banff/Lake Louise/Jasper, Canada
Grand Canyon
New York/Cruise up to Canada
Alaskan Cruise
Washington, DC
Branson, MO
Of course, our honeymoon to FL and then up the coast to PA
Several trips to Connecticut
Oregon coast
“Local” trips:  Hearst Castle, Half Moon Bay, SF, Solvang, Palm Springs, San Diego

I’m sure I’m missing a few, but at our age, who can remember everything?? 

We can visit these places in our mind and through photographs and relive some of those wonderful moments, some of the exquisite scenery, some of the touching moments.  I hope when you sit in your chair you think back on some of those and remember…. For that’s all we have right now is our memories.  I’ll cherish them forever – just as I’ll cherish you forever!

Happy Birthday, sweetheart!

Love,

Your Angelface

The C Word – Melancholy Anniversaries

I had a dream recently about Mike’s brother, Tom, and his wife Paula.  It was a dream where we were all together, George and myself, Tom and Paula, and two of their children.  I don’t recognize where it was that we were.  In the dream I had a card for Tom and Paula for their 25^th anniversary and a card for Arthur who just graduated from college.  None of these, of course, are accurate at all as Tom and Paula celebrated their 40^th anniversary last year and Arthur graduated a long time ago. 

I woke from that dream feeling, I don’t know, melancholy or just plain sad.  I’m not exactly sure why, but I have a theory.

Today, June 2, 2019, would have been my 40^th anniversary with Mike.  Nowadays that seems so distant in the past when it used to feel like yesterday. 

Mike died seven months after our 20^th anniversary.  For years we didn’t do big celebrations, maybe going out to dinner just the two of us.  However, on our 20^th anniversary Mike had planned a celebration and we went out for dinner (as usual) but he had invited a host of other people to join us at Charlie Brown’s in Sunnyvale (no longer there).  We had a fun evening eating and visiting with our friends to celebrate. 

In the ensuing months there would be other events, celebrations, etc. for various things.  Looking back at this period of time there were many “last things” that he did to make memories for people he loved. We didn’t know it at the time of course.  We didn’t know that the dinner party at Randi’s was the last time we would have a fun evening like that.  We didn’t know that Thanksgiving with Tom and Paula at their home in Tuolomne would be the last Thanksgiving together.  (When our children were younger it was something we did all the time but in 1999 it was the first time in years that we’d celebrated together.)  We didn’t know that having the opportunity to foster a child, something Mike had wanted to do for years to give back to the system that was so good to him, would end so soon.  The bonus in that situation is that Mike also had the opportunity to be a grandfather for a short time as our foster daughter, Rachel, had a baby just before moving in with us.  We didn’t know that the Y2K (year 2000) celebration that Mike helped pull together at church would be the last party he ever planned.  These are just a few of the things that happened in the months prior to his death that showed God was giving him time to be with people he may have not seen too often, to celebrate with those he loved and whom loved him.  They were the final good-bye’s that we were not aware of.  God knew.

When I married George our theme song was “Grow Old Along With Me”… the best is yet to be.  I had hopes that I would get 20, 25, 30 or more years with him.  I had hopes that I would get to celebrate “big anniversaries” with him.  I was lucky to be young enough to start over and looked forward to the many years ahead of us.  I was just 46, he was 49.  Surely this was achievable!

When George was diagnosed with cancer in 2014 and we learned that this rare cancer was not curable and barely treatable, there was a point in time when I remember thinking that I would never have a 25^th anniversary, maybe not even another 20^th anniversary. 

I remember feeling cheated.  My parents had not only celebrated their 25^th but also their 50^th anniversaries (almost made it to their 60^th).  The parties we had to celebrate those milestones were some of the best memories I had, especially the 50^th.  How joyous, how lucky were they!  How lucky were we to witness that?  Not only were we celebrating their 50^th but also celebrating my oldest brother’s 25^th anniversary and my next older brother’s 15^th.

This year, 2019, means that my brothers will again be celebrating “big” anniversaries.  By big I mean, more than twenty, more than 30.  More than I will get to celebrate.  48, 38, and my younger brother’s will be 36.  In a sense I envy them the longevity of their marriages.  At the same time, I feel sad that I will never achieve such milestones – milestones that I had looked forward to when I was younger.  Milestones I believed were going to be mine as well.

At the time of George’s diagnosis, we had been married eleven years.  We celebrated our twelfth anniversary in the hospital as George was recovering from his first major surgery to try to treat the cancer.  I brought up some dinner for myself while George attempted to try whatever we ordered from the kitchen.  He really wasn’t eating much.  I wasn’t sure if we would see another anniversary.  Those were dark days.

I remember wondering if we would make it to our 13^th, 14^th, or even our 15^th anniversary.  It has been touch and go for the past few years.  We reached our 16th anniversary last year – but there was no celebration.  No dinner out.  No party.  Except for a brief acknowledgement where we said “Happy Anniversary”, it was just another day.  Just another day.  With just four months until our 17^th anniversary, I wonder if he’ll still be here.  If he is, I wonder what condition he’ll be in.  If he makes it to October 11, 2019, it will be an anniversary, but it is likely not to be a happy one. 

As I get older, there will be more anniversaries, “big” anniversaries.  However, these will be ones of a different variety.  Next year marks the 20^th “anniversary” of Mike’s death, the 20^th “anniversary” of my first date with George.  As those anniversaries creep up and up and up, eventually the same will be true for when I commemorate George’s life and his death.  But it’s not the same, not even close, to being able to celebrate here on earth with him. 

Addendum:

As I was going through and weeding out some of my belongings, I came across the wedding dress from when I married Mike.  Since it is not feasible to keep it any longer, I decided to deconstruct it and make something special for Sara, Becke, Addy and Bella. 

I made pillow covers for Sara and Becke.  One side is from my dress.  The other side is made from two small pieces of tie quilts that my mom had made.  Appliqued on to that side are butterflies made from fabrics that were worn by myself, Mike, Sara, Becke and the twins. 

With more of my dress, I made American Girl doll dresses for Addy and Bella’s dolls, Mary Ellen and Grace.  In the bouquet they carry are a couple of flowers from the plastic wedding cake topper we had.