Tuesday, December 31, 2019

The C Word – Epilogue


December 31, 2019
It is New Year’s Eve – preparing to launch in the year 2020.  It is so hard for me to imagine that I have lost two husbands in these first two decades of the 21st century. 
Twenty years ago was when all the Y2K hoopla was going on.  What were computers going to do when it rolled from 1999 to 2000?  Huge amounts of money spent on research to protect the world from going into some cosmic meltdown in regards to technology and the internet. 
Twenty years ago Mike and friends made the plans for the church to have a Y2K party.  Music, games, songs and laughter ruled the night.  We didn’t know it would be the last New Years Party, let alone just a party, that Mike would be at.  We still had a lifetime ahead of us.  We had plans.
This year I enter the new decade alone.  Unlike Y2K when we thought we had years ahead of us as a couple and a family, this one I enter with a sense of loss.  Loss of my partner and husband, loss of the feeling of home, loss of the retired future we had looked forward to. 
Yet I must move forward.  Every movement I make is bittersweet, whether it be doing some traveling, working around the house, cleaning out the plethora of tools and nuts and bolts of the garage, preparing to get the house ready to sell.  While some of these were thoughts that I had to keep me going during George’s illness, the actuality of doing them brings me sadness.  After fifteen years of caregiving, the only person I have to take care of is me… yet even that is difficult to do right now. 
The first year of the new millennium decade (2000) and the last year of this decade(2019) have not been kind ones.  They’ve been times of loss, struggle, depression.  I’ve had to let go of what was and start over again. For the first four years of George’s cancer diagnosis there have been periods of darkness and hopelessness, but overall they weren’t too bad (well, factor out 2016 when he needed two separate surgeries).  This last year, however, was not a great one for the entire time.  For the first nine months George struggled with so many health issues that took their toll on his weakened condition.  And, for me, the last few months I’ve struggled with loneliness like never before. 
While I am now free to roam about the world in a way I could not before, the price of that freedom is not something I would wish on anyone.  I’ve been telling myself for years that I needed to be patient, that the day would come when I wouldn’t be needed to care for someone.  That time is here and there is a part of me that is sad about that. 
As horrible as 2019 was, I would do it over again in a heartbeat if it meant that I could hold George’s hand a little bit longer or snuggle up to him and fall asleep in the crook of his arm just one more time. 
The C word story has come to a close – but the feelings and emotions will linger long into the future.  The C word has changed my life forever.  It has changed the lives of all those who have been connected to us over the years. 
George, if you’re out there, know that you will never be forgotten.  You will be remembered for your strength of character, for smiling on the outside even when you were hurting on the inside.  You’re a witness to the power of faith and the power of prayer, something you talked about on Father’s Day in 2015.  When people talk to me about you, they talk about how your eyes sparkled during conversations, about how ‘good’ you looked all the way to the end.  They attest to the strength you showed in battling this disease and your positive attitude.  They will not forget you. 
I love you and miss you every single day.  Your whole family does as well.  We will keep putting one step in front of the other because that is what you would want us to do.  We will keep sharing our stories of you to keep your memory alive.  As a family, we will be there for one another, to help each other cope. 
Thank you for loving me for the past twenty years.  I love you, always and forever. 
…. Your Angelface


Monday, September 30, 2019

The C Word – Farewell My Sweet George


It has been an incredibly long few days.  At 1:30 this morning we all finally decided to go to sleep.  George was breathing quick yet easy.  He wasn’t ready to go yet even though it was September 30 and the five year anniversary of his first cancer surgery.  We figured George was waiting for today so that he could say, “aha!  I made it to five years!”  We also thought he was playing a joke on me for when I made him wait a few extra seconds at the end of the aisle on our wedding day 17 years ago.  Practical joker that he is.
We all went to bed and went to sleep.  Sara slept lightly, of course, as she took on the role of eyes and ears.  Early this morning she heard me snoring and then stop.  She heard George take a breath.  And then she heard nothing.
I had woken briefly and also heard George take a breath.  Unbeknownst to me, it was his last one.  We quickly gathered the rest of the girls into the room.  After a few moments of holding him, I phoned hospice and got the ball rolling.  Although our clock said approximately 5:40AM – Time of death is posted at 6:16 when the hospice nurse arrived. 
As we awaited the Neptune Society to come by, we sat and talked.  I held George’s hand, his face.  I kissed him over and over.  Steph again placed herself by his left hand and held on.  It wasn’t until they came to pick up his body that she completely fell apart.  She did not want to let go of his hand.  Sara helped get her off the bed as I told her she did not want to be present for what was happening next.  Sara took her to the living room.  Becke stayed with me as we watched them wrap George up and wheel him out on the gurney.  We walked behind them and watched as they loaded him in the van.  It was then that I broke down sobbing.
It's over.  His pain is gone.  He’s whole again.  But boy will I sure miss him so much. 
And now my new life also begins.  Life without George.  I will be busy the next few weeks taking care of affairs. 
I am so grateful for my children who have been her loving on me and making sure I eat and drink (and I’m sure sleep).  This is a different loss than when Mike died.  It feels different – in a good way. 
I know that many friends will step in over the next few days, weeks and months.  They will help me make the transition.  They will help me make some decisions.  I have been waiting for so long to have some freedom to move about and go places and now I can do that.  I will do that with George in my heart and on my mind.  He would want me to keep going.  He prepared me for this.
Rest in peace, my sweet husband.  You are in the arms of the Angels and celebrating with those who went before.  I love you…. Forever and always.
Your Angelface


Sunday, September 29, 2019

The C Word – The End is Near


This morning the breathy death rattle began.  I summoned the girls into the room and got hold of Rosemary and Denise.  Since 10AM this morning we have been sitting together in the bedroom, holding vigil over George.  He is unresponsive for the most part except for an occasional squeeze of the hand or what appears to be a perfectly timed twitch.
Sara and Becke have been fetching food and drinks for everyone.  Sitting on the floor or in chairs, we wait and wait.  I am at George’s head – softly stroking his head and holding his left hand, the one with the wedding band, the one we would jokingly claim as “mine”. 
This room has heard many stories today – some funny memories, some poignant memories, some tears.  Christian music in the background, quietly keeping our eyes on the goal. 
I’ve been able to keep George comfortable with various medications.  After ten hours we are now joking that George wants to pass on the 5 year anniversary of his first major surgery for this beast – tomorrow, September 30.  Of course, we pray peace comes sooner, but if he does plan on waiting, hopefully it will be right after the stroke of midnight and not later tomorrow.
Sara and Becke are now bringing Denise home and picking up clothes for Rosemary who will spend the night with us.  We are all in this together.  Patiently waiting for the hand of God to reach down and carry George home. 
I have whispered into George’s ears all day – it’s time to go home, we love you, your body is so tired, it’s time to let go.  I’ve whispered the Lord’s Prayer, or sung a song along with something playing on one of our phones. 
Steph is reading some bible verses to Rosemary, myself and George.  She has done well today in maintaining composure and being in the moment. 
The end is so near yet it is not here yet. 
Come, Lord Jesus, come bring your son home.
George – we love you so much and we will miss you.  We await to see your angel face.

The C Word – Day 1,872


We made it through another day and another night.  There have been some difficult moments throughout the past 36 hours.
Trying to keep George’s restlessness under control is like being a chemist in a trial.  Which meds and at which doses work best to calm his twitching body. 
He had a couple of visitors yesterday and he was able to respond to them a little bit.  We laughed when he told Stan.  “When I first met you I thought you were going to be a stuffed shirt.”
Earlier in the morning as Sara and I sat visiting in the room with him, I leaned over and whispered, “I love you – forever and always” (something I’ve done a lot over the past few days).  He squinted his eyes and looked over at me and said, “Ok, what do you want now?” (as if my saying that was because I wanted something from him.)  Needless to say, Sara and I busted out laughing!  He had a few of those moments – those gifts to us to show his sense of humor is still alive and well.
He had a hard time keeping his eyes closed yesterday even though he was very tired.  That glassy-eyed look of confusion, of being somewhere between two worlds.  Just as he would start to doze off his eyes would fly open.  Finally, in early afternoon, I found the right cocktail that allowed him to sleep peacefully for the rest of the day and into the evening.  Throughout the day we’d go and lay with him, talk to him.
He was agitated again last night for a bit and it took awhile to figure out the right cocktail once again.  Finally, at 1:30, I found it and we both slept well.  Something I really needed.
We shall see what today brings.  I’m grateful to my daughters who are here to support me – make sure I eat, etc.  We are pulling together, preparing to say our final goodbye.


Saturday, September 28, 2019

The C Word – Day 1,870


Today we learned that George’s creatinine spiked to 5.3 from 2.1 a few days ago.  This is “severe failure”.  The result is that George is now off his nightly TPN feedings as the vitamins and nutrients in those will not absorb or filter because of the kidney.
Today George asked to stay in bed.  He grows weaker by the day.  I suspect by later today he will be bedridden – which is safer for him. 
He had several visitors today.  His best friend, Larry.  A former boss and his wife Joe and Jill. Also the hospice doctor and our nurse. 
By the time they all left he was exhausted.  I checked in on him from to time.  Sometimes he was sleeping, sometimes just laying there.
We have converted him to all liquid meds for ease of administering.
This evening as I climbed in next to him, he asked a question, then made a random statement.  These verbal statements continued for the next few hours.  I think I finally dozed off.  He was asleep the whole time he chatted.
 Tonight he went camping – in his head – as he declared that everything was packed into the big boxes.
He also told someone that “That’s my brother John.” – which means he has begun to see those who have come before him.
Right now the biggest issue is his body twitching.  His whole body is repeatedly twitching.  I phoned hospice and asked if there was something I could give him.  She suggested one of the new medications that was delivered tonight.  She said give it 15 minutes before it starts working and if he’s not calmed down within 45 minutes to administer Lorazapem.  I have a feeling it will be the latter as his body is still going full bore and it’s been a half hour.
Going to be a long sleepless night for me. And honestly I believe that George will not last more than a few days.  His body is ready to let his soul loose.


Friday, September 27, 2019

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. 

Wednesday, September 25, 2019

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 30th 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 9th month, not the 10th.  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.