I will post more later, but I do want to say the love of my life passed away peacefully today.  Sam is in a much better place and is no longer suffering.  Please help me celebrate his life.

q'ua

All labor that uplifts humanity has dignity and importance and should be undertaken with painstaking excellence. Martin Luther King, Jr.

Just a quick check in.  Sam is sleeping peacefully right now and did so for most of the day. Tonight he talked about going "upstairs" again and asked where Rocky is because he wants Rocky to come with him.  I told him Rocky is waiting whenever Sam is ready and he nodded his head at that.

Had a last minute brunch with the book club this morning.  It proved to be very therapeutic for me, so thank you each and every one of you.

Tonight is quite peaceful and lovely, both inside the condo and outside.  A beautiful Alaska evening.

q'ua

It's not what you've got, it's what you use that makes a difference. Zig Ziglar

Friday night.  In the past, Sam and I spent Friday nights racing to wherever our weekend retreat was.  Tonight, we spent it at home, dealing with the most of exciting things in a person's life, constipation.  Oh joy. He is in a vicious cycle, the more pain meds, the worst the constipation.  The worse the constipation, the more pain meds are needed.  There needs to be a better way.

Brian Mac arrived last night which made Sam quite happy, although there were times throughout the day today when Sam did not know how or why Brian is here...or for that matter, who Brian is.  He is often very confused, such as the time a couple days ago when I could tell he was not very sure who I was.  I asked him if he knew my name and he rattled some name off in Russian.  It has been over 20 years since he was in Russia!  His sense of humor right now is very funny albeit in an odd sort of way.  How can anything be funny right now?  On the other hand, laughter is the best medicine so he is doing the best he can without realizing it to make the transition softer for us.  I wish I could share with you all the things he has said over the past few days which have made me laugh, but I just cannot.  There are so many and then I have to take a deep breath to stop myself from immediately bursting into tears at the sadness of it all.

Sam does keep repeating "life is not fair."  No it sure is not, but I refuse to play the victim, although I certainly have my moments - especially when he puts his arms around and tells me how sorry he is.

Most of the time now, though, he is only here in body.  His spirit and mind are elsewhere.  He told Brian and I he had a joke for us tonight.  Neither of us could even begin to follow it let alone try to make sense of it and he thought it was really funny.  I still have not been able to figure it out.

He is talking more and more of "upstairs", the "people over there," and other innuendos.  I know it is only a matter of time, but who knows how much time exactly.  I am just doing my best to keep him as pain free as possible in the meantime.

I already miss him.

q'ua

I like nonsense, it wakes up the brain cells. Fantasy is a necessary ingredient in living, it's a way of looking at life through the wrong end of a telescope. Which is what I do, and that enables you to laugh at life's realities. Dr. Seuss

Each blog seems to get more and more difficult to write.  There is so much I want to share, but finding the right words is proving to be more challenging than I ever dreamed.

Today Sam reached another milestone (if you can call it that) in his end of life process.  Urinating became extremely painful so he is now the proud owner of his very own catheter.  The fascination of the process on his part is amazing.  He kept asking for the process to be explained over and over again, and still tonight he is completely mesmerized.  Finds it amazing he does not need to leave the bed to relieve himself.  

His oxygen level is very low at this point.  I am contemplating doing away with the concentrator and just going with straight O2 as the O2 seems to bring his oxygen level up considerably.  We will see what the next day or so brings.

The hallucinations continue, too.  He is with me one moment and somewhere else the next, but I am always a part of the goings on.  Tonight he asked if I was upset because "they" forgot to ask me my opinion.  I have absolutely no idea about what, but he was very concerned that "they" blew it.  And then at dinner, I sat to his left and he focused on the space to his right.  He told me he was trying to figure out who those people were sitting there looking at him.  I wish I knew myself but I think I can name some of them, like all of our grandparents - his Grandmother Smith, especially.  

The change in Sam the past week almost caught me by surprise.  His hospice nurse told me one day that in her experience, those with the slow growth cancer often have the quickest decline.  Sam is living up to that.  With the amount of pain he is in from the tumors in his lungs, the cancer in his pelvis, hips, femurs, spine and lymph nodes, plus the blood clots, I do not want him to suffer.  As each day passes by, I become more and more at peace with our situation.  Today I told a couple people at work that my grieving now will be much shorter than many people anticipate as I have been grieving for four solid years.  My grief will turn to celebration for Sam as he will no longer be in pain, but will be at peace.  

My heart will always hurt, though, please do not make a mistake about that.

For those of you who are wondering, Sam wishes to be cremated.  There will be a service at Fort Rich National Cemetery here in Anchorage and then at some point, there will be a Celebration of Life in John Day and I will spread some of his ashes in the John Day Valley.  

Pray for peace.

q'ua

We want a world where life is preserved, and the quality of life is enriched for everybody, not only for the privileged. Isabel Allende

Now into the second week of hospice and I have so many different emotions, I do not know even where to begin.  Assessments conducted by the doctor, nurse, occupational/physical therapist, social workers, and the personal care assistant lasted anywhere from one hour to four hours on four different days last week.  At one point, I took a two hour nap because I just could not stay awake any longer, let alone try to carry on an intelligent conversation with someone.  Glad they are over with and we can at least pretend to be in some sort of routine.

On the Bird to Gird trail a couple weeks ago.

Now, though, we are working on adjusting Sam's pain meds to match his pain level.  No one really understood the level of pain he experiences.  On the other hand, he finally understood why he needed to fully describe his pain and be honest about his pain level.  This, if nothing else, is challenging.  What a person's body goes through during this time is nuts.  On top of the pain meds, the doctor decided to put him on steriods and for the life of me, I cannot remember why.  Today, Sam hallucinated a good portion of the day.  It was not scary, but it made me wonder if my Sam was gone for good, especially when he asked why I did not "open the door."  I thought for a couple seconds and finally just said, "because I am not ready to."  He accepted that response and moved on to another topic.  That question made me catch my breath, though, because many people who are dying talk about seeing a door or going through a door. So, of course, now I am wondering what that was all about but I am not about to bring it up.  He also told me the football players I am coaching are not playing up to their ability and they are trying to fake me out with their half hearted practices.  Who knew?  Tonight, he seems to be back to his old self but we shall see what tomorrow brings.

As for me, I am doing pretty good.  Just wish I could get a bit more sleep, but that opportunity will come soon enough.

q'ua

“Happiness, not in another place but this place...not for another hour, but this hour.” ― Walt Whitman

Here we are.  Another new chapter in our cancer journey.  The chapter I dread the most.  This past Thursday the palliative care doctor visited us from the VA for four hours.  Many topics were discussed, the main one being where to go from here.  Sam's pain will never be alleviated, but it can be managed. To manage it effectively, Sam chose to go into hospice.  So either tomorrow (Monday) or Tuesday, hospice will visit for another assessment.  In the past three days, Sam and I have talked about more things than in the past 9 years combined.  Sadly enough, the hospice decision brought us much closer.  We have shed many tears together and separately.  I can hardly walk down the hall without tears coming to my eyes.  Thank goodness we addressed many end of life issues when Sam was initially diagnosed so we do not have to do that now. , And how do we know we are making the right decision?  When Sam said hospice, the doctor did not even attempt to dissuade us.  That in and of itself told me oodles because in order to qualify for hospice, two doctors must state that your life expectancy is less than 6 months.  Again, it does not mean it cannot extend beyond that time frame and it does not mean that Sam cannot change his mind somewhere along the way.  However, by the doctor not even offering up one argument told us a great deal.

Have I told you how much I love my job?  I love it even more because I have been told to work because I want to not because they need me to.  I want to.  Desperately and will continue for as long as I can.  If Sam's pain level becomes manageable without him becoming completely "loony" he could be around for quite some time.  Another reason for me to continue working.

Also on Thursday, Rocky, our big tough black cat who I have had since he was about 4 weeks old, went to be with his brother, Yukon.  Nothing like a double whammy on the same day.  He was so sick we should have put him down a long time ago and I have a lot of guilt for allowing him to go on for as long as we did.  He is safe and at peace now, though.  We all miss him.

This is all I can write for now.  I know I will be okay as I was single for many, many years and I can and will do it again. Does not mean I want to, though, without Sam.  That is for sure.

q'ua

Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming. What do we do? We swim, swim. Dory in "Finding Nemo"

Over the weekend, Sam and I came to terms with a few things in this current chapter of our lives.  

1.  No more traveling (which is the most difficult.)

2.  Sam is extremely limited in things he can do for himself.

3.  No matter how excited we are about the new cancer drug, it is going to do nothing for the pain caused from the bone metastases.

4.  The pain from the bone mets is excruciating (my word for the day.)

5.  The bone pain (hips/pelvis/femur) is much higher priority than the pulmonary embolism, the deep vein thrombosis and the pulmonary tumors combined.

What to do?  The pain is wreaking havoc on Sam's quality of life and maintaining a good quality of life is extremely important to us.  

Thursday is the day for the VA home assessment.  There are temporary measures in place until this is done in order for us to continue living day to day best as we can.

Yesterday during our chat we both stated we feel this is not fair but it is what it is so we will make the best of it, no matter where it takes us.  

Unless Sam's health takes a major upward swing, which is entirely possible, we are both preparing for the distinct possibility of hospice sometime soon.  After last night's discussion, I think Sam might be waiting for me to make that final decision.  We are both slowly wrapping our minds around it. Just keep in mind, the whole point of hospice is pain management.  Sam is already taking pain meds of the most intense at the highest dosage without becoming completely loopy.  Any increase and there is a good possibility we will not have many conversations such as we did last night. That being said, hospice can last a long time.

I hope to write every few days now as my energy level is dwindling and I need to focus it on Sam, myself and work.  

I do have a favor to ask as well.  Several years ago, Sam's storage unit was broken into and he lost almost all his sports memoriabilia.  If you happen to have any photos (sports, school, whathaveyou) of Sam from throughout the years, would you please share them with us?  You can email them to me at joieevans@alumni.utexas.net and it will be greatly appreciated.

It is coming to the end of summer.  The only good thing about that is FOOTBALL!  My Denver Broncos are having a terrific summer camp (if everyone can stay out of jail, good grief!) and are looking forward to another awesome season.  I can hardly wait!

q'ua