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

Today we visited Dr. Chung, the radiation oncologist. At this point, there really is nothing he can do for Sam, although he did tell us about another new drug recently approved by the FDA for bone pain.  It may be at some point in the future, he will recommend for Sam to try it.  Forget what it is called, but I will remember eventually.

Several times today I found myself fighting back tears...cannot wait until I can go a full day with doing that.  Another one of those "eventually" things.

Sam also met with a respiratory therapist at the VA who gave us all kinds of information about using oxygen.  Things we never even contemplated, although most of it is common sense...like no open flame, meaning not being anywhere near candles, smoking, BBQs, wood stoves, gas stoves, etc., etc.  Sad thing is, that really rules out our camp trailer.  There is no way he would be able to negotiate the steps, anyway.  We are both quite glad I insisted on getting a lot of my site visits completed in May and June.  Gave us an opportunity to get out and camp.  So for now, we will have to find other lodging facilities which have handicap facilities and wheelchair access.

So, here we are, getting ready for Friday.  So glad the weekend is upon us!

q'ua

Tonight I am not going to write much.  Spent a major portion of the day at work, more than I anticipated.  Unfortunately, we are extremely busy and, unfortunately, we have yet to meet with the VA for a personal assistant for Sam - phone tag is the name of the game on that front.  Tomorrow we meet with the radiation oncologist for a follow up from the radiation on the femur a few months ago.  Dr. Chung always enlightens us with all kinds of information, so it will be interesting to hear his thoughts this time around.

I am driving Sam nuts, I think.  I keep seeing his eyes roll up into the back of his head.  Of course, I am looking at him from the side, so it freaks me out.  Even more so because his breathing is so crazy, so then I am asking every 5 minutes, are you ok?  Poor guy is just falling asleep, or at least trying to anyway.

We are both extremely tired this evening, so are off to bed early.

Thank you again to everyone.  More cards arrived today (Julie M...yours was one of several that cracked him up!) He kept repeating "Gray Bar" which made it even funnier listening to him.

Cathy D...thank you for the shower seat hints.  Very helpful and after the catastrophe last night, today he told me he needs it.

Sweet dreams everyone.

q'ua

I am determined to be cheerful and happy in whatever situation I may find myself. For I have learned that the greater part of our misery or unhappiness is determined not by our circumstance but by our disposition. Martha Washington

Timing is everything as all of you know. Today we fully expected to say no more treatment, we will just see how it goes for awhile, possible hospice, whatever...instead we are ending the day feeling much more positive about the short term future than we did when the day started.

Recently the FDA approved two new drugs, both in pill form, one for Sam's exact type of non-small cell lung cancer with a specific bio-marker (EGFR) and the other a blood thinner, which means no more injections in the belly!  Because they are so new, the VA needs to order them so it might be next week before Sam gets started on the Gilotrif for the cancer and Xarelto for the blood clots.  We go back to both doctors in a month to see how things are going. Hopefully no more excitement like this past week.  

Speaking of which, Dr. Davis from the VA kindly explained to Sam what happened with the pulmonary blood clot, and is still happening until it completely dissipates.  Just to give you an idea of Sam's thought process now, this is the 4th time (minimum) someone has taken the time to explain this to him.  Dr. Davis' description, though, I think finally got through to him.  Basically, the blood clot in his right lung is at a major intersection and is spanning out in 5 different directions (just like fingers) all at once.  Sam responded with a "so I almost died" statement and the doctor nodded his head.  When we left, Sam continued to talk about how serious the situation not only was, but still is.  The blood thinner is mostly to prevent new blood clots from forming but also to (hopefully) help slowly dissolve the current ones which, as I have previously noted, could take a long while.  We also discussed Sam's oxygen level, especially since when we left home it was at 78%.  Any movement on his part causes massive pain and decreases his oxygen level.  The two go hand in hand. Therefore, the need to be on oxygen 24/7.  I just have to find a way to keep him from tugging the oxygen tubes off during the night.  This morning I suggested duct tape (it's the Alaskan way, don't you know?) but he did not seem to find that very funny like I did.  What is up with that?  Anyway, he is learning to adjust the oxygen according to whatever it is he is doing which is a continual work in progress.  Two things he will have for the rest of his life, oxygen and blood thinners.  

Had about an hour between appointments so enjoyed some
and fresh air at Valley of the Moon park today.

At the oncologist's office, we discussed many things.  First, Sam's pain level.  If he is sitting completely still, the pain is between a 5-6 in his hips/pelvis area.  Any movement, it shoots right up to a 10.  The meds help bring it down to a dull numbness for a few minutes.  The challenge is that the meds also make Sam very spacey.  We did discuss why hip replacement is not an option for Sam in that it would create more problems than he already has since there is nothing to attach it to as the pelvis is quite fragile itself from the cancer.  It is like there are lots of tiny little fractures throughout the bone and any additional stress would not be good.  The new cancer drug just approved by the FDA in the past week or so, Gilotrif, is meant to slow down the progress of the cancer, and help give Sam a better quality of life for the remainder of his life.  Unfortunately, as the doctor kindly reminded us several times, right now, there is no cure.  The most we can hope for is managing the growth.  

Many of you (ourselves included at times out of pure frustration) want to know how much longer do the doctors expect Sam to live.  Well, it is nearly impossible to even guess.  As of right now, Sam has lived almost 4 years longer than anyone anticipated when he was initially diagnosed with what we later found out was lung cancer.  Hearing the news today that there are 2 new non-chemo drugs on the market available for him to try raised our spirits enormously.  At the same time, we are dealing with the "new" normal, and that is his inability to walk and need for constant assistance.  As each day goes by, this is becoming easier for me to deal with.  I told one of my colleagues at work this morning that generally it takes me about 3 days to digest whatever is happening, and then I am able to wrap my mind completely around it, accept it, figure out how to deal with it and move on. 

Daily, I admit, I wonder when hospice will happen.  Not if, but when.  For now, though, we are entering another new chapter on this cancer rollercoaster.  Not very fun or exciting, if you ask me.  I am just so grateful Sam is still here with me.  Last week I was scared to pieces that he might not even get to come home.  I cannot thank all of you enough for everything everyone has done, and is doing, to make this transition easier for us.  You are our angels, that is for sure.  All the prayers, thoughts, notes, emails, cards, calls, texts, everything made such a huge difference.  Thank you from the bottom of our hearts.

In the next couple days, VA will be assessing Sam's needs here at home to figure out how best to help him.  That will be the next step in this process.

Hugs to everyone and thank you again.

q'ua