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.