There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love. - Washington Irving

Happy New Year to all of you!  Never before have I been so grateful to have the new year come around.  As I told a friend tonight, the days between Thanksgiving and Christmas were downright awful and I am so very glad to have the holidays over with.  Thanksgiving and Christmas, the actual holidays, I spent with family which made both days much easier to deal with.  It was rather odd that I found myself feeling okay on each of those days, yet not so much on the days between the two.  I wonder what next year's holidays will bring?

Sam at the Iditarod Restart, 2012.

Each day I work hard to move forward without Sam and the struggle at times seems more than I can handle.  Then, I remind myself I am a survivor, I know I can do this, but it certainly does not mean I am happy about it.  I miss him more than I can even begin to put into words. The grief is a deep black hole within me that generates more pain than I ever imagined.  Some days it takes all my energy to just breath, let alone function.  Yes, I am burying myself in my work.  That is what I do and how my mind and body function.  I am okay with that if doing so is going to get me through this time.

Looking at pictures of him smiling make me smile, so I spend a lot of time doing that.  It truly makes me feel better.

Sweet Pea and Shadow still have not worked out their relationship.  She hisses and he chases her as a pay back.  Hopefully one of these days I will come home and they will be best buds.  It took Rocky and Sweet Pea a year to come to terms with each other, so I have to remind myself to be patient!

For those of you who wondered, yes, I wanted Oregon to beat my 'Horns.  Mack Brown is a great coach, but he should have done like John Elway and gone out while he was still on top several years ago.  Just my opinion.  Speaking of my Broncos, I do hope it is the Seahawks we meet in the super bowl.  It would seem just like old times!  My second choice is the Niners, just so you know. Just hope the right Broncos team shows up for the playoffs.  I did see the schedules for next year and the Broncos are coming to Seattle.  Guess what is now on my calendar?

q'ua

“When someone you love dies, and you're not expecting it, you don't lose her all at once; you lose her in pieces over a long time—the way the mail stops coming, and her scent fades from the pillows and even from the clothes in her closet and drawers. Gradually, you accumulate the parts of her that are gone. Just when the day comes—when there's a particular missing part that overwhelms you with the feeling that she's gone, forever—there comes another day, and another specifically missing part.” ― John Irving, A Prayer for Owen Meany

The past couple of weeks, for whatever reason, have been more difficult than any others so far.  I do not share this with you for your sympathy, but for your understanding.  It is challenging to find the desire to write because all I really want to do is curl up in a hole somewhere and cry a good hard long cry.  The only problem is that I fear I would not be able to stop and I would just continue crying.  My heart hurts more than it ever has.

Sam during our  2012 winter trip to Lowell Point in Seward.

Work is very busy and tonight, as I sat at my desk finishing up a project, I realized I was alone in the office - everyone had already left for home.  It suddenly occurred to me I did not want to go home to my empty condo because Sam is not there.  I could not hold back any longer and so I sat at my desk sobbing hysterically for about 15 minutes, hoping and praying at the same time that no one would see me like that.  Now I am home and the tears continue while I beg God one minute to take care of Sam and the next begging Him to bring Sam back, all the while wondering how much more of this I can take.

As a friend noted over Thanksgiving, grief is a place that unless you experience it yourself, you truly do not understand.  I wholeheartedly agree.  It is a process which slowly I am working my way through while at the same time knowing it will always be there.

It is snowing and absolutely beautiful outside.  Although I know Sam is here with me in spirit enjoying it, I would rather he were here in person.  I need him.

q'ua

Just realized I better explain myself even further.  When Sam passed, I put his wedding band on to wear with mine, promising myself I would always wear as it was a part of him. It was a daily reminder for me of how much he truly loved me.  However, the only way it stayed on my finger was to wear it over my band with my diamond holding it in place. I realized right away it was not a smart move to wear it but I could not bring myself to let go of it.  Finally, Monday I decided I just needed to make myself do it, which I did.  Interesting thing is, once I made the decision to not wear it any longer, my memories of him changed, becoming much warmer (for lack of a better term), perhaps more clear in my mind's eye.  The guilt at first of not wearing it any longer almost made me put it back on, but I told myself I really do have to find little ways to move on. Removing his band is just one very small step in that direction.  As to whether or not I will ever remove my own wedding band, as of right now I say no.  Tomorrow may be a different story.

q'ua

“It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.” ― Rose Kennedy

This morning I woke at 3:30, completely freaked out from a dream I had about Sam.  Took me all day to realize what the problem is and that is today marks 13 weeks since he passed, tomorrow is the 3 month mark.  My ability to compartmentalize the pain is sometimes too effective!  That all being said, today I chose to stop wearing his wedding band.  The first few minutes of not having his band on my finger were a bit odd, I felt a huge pang of guilt, and then I forced myself to stop thinking about it and just move on.  Day 1 is over and I am ok with my choice.

Last weekend Sweet Pea (the cat) and I adopted a new cat to replace Rocky.  Now, instead of being lonely, Sweet Pea is spending her time hissing to make sure the new cat knows who is boss.  And yes, we have yet to name the little guy.  Perhaps you have some ideas?  He is pure black, about 3 years old and is extremely friendly.  He is beginning to chase after Sweet Pea and it is hilarious because now she takes off running.  Turn about is fair play!

These pictures are from our trip to Eagle, Alaska, July 4, 2010.  It is located on the Yukon River and became one of our favorite places in Alaska.  The people are so friendly and we had a great time.  Eagle is a 13 hour drive from Anchorage, most of which is on a gravel road, better known as the Taylor Highway, Anchorage to Tok to Chicken to Eagle.  Immediately upon arriving we were invited to the community potluck so off we went.  Just like home!  Luckily we brought lots of carrots and celery with us to eat so we took them as our contribution.  The residents told us next time to load up our truck with watermelons because they would buy them and we would be able to pay for our trip.  In other words, fresh fruits and veggies are hard to come by there being so far from grocery stores.  Yes, there is a very small community store but the selections, not to mention the prices...ohmigosh. Eagle's 4th of July celebration is awesome.  Trap shoot across the Yukon, softball tournament, parade (I am pretty certain all 200 residents were in the parade), crafts fair, and a water dunk contest along with the community potluck.  Fun times to be had by all!  Unfortunately, we ended up leaving quickly on Sunday night when the thunderclouds started forming.  Being from eastern Oregon, we knew what they meant, so we hightailed it out of there about 10pm.  We were very lucky as the storms were very bad, the road washed out and was not repaired until the following year.  I am looking forward to going back, maybe even in the winter to experience the 30 below weather.  Ok...maybe not...but maybe...

q'ua

“The pleasure of remembering had been taken from me, because there was no longer anyone to remember with. It felt like losing your co-rememberer meant losing the memory itself, as if the things we'd done were less real and important than they had been hours before.” ― John Green, The Fault in Our Stars

Nothing like marking time.  First in days, then weeks, and soon...in months, followed by years.  The two month mark came and went the other day and as I commented to a couple friends, it seems like time has flown by, yet the moments of grief seem to creep by and I wonder how long they are going to last because the pain is deep, intense, and sometimes literally doubles me over.  Thankfully I know those will ease in due time as well.

I have been staying busy, traveling to see family and friends, watching football, having heart attacks over my Denver Broncos (HELLO?!?!?!?!), and most importantly, hanging out with Sweet Pea.  She continues to walk around at night crying, searching each and every room when I get home from work looking for Sam and probably Rocky.  Makes me very sad I am unable to tell her they are not here, yet I often wonder if she is able to see and hear things I am not because she certainly acts it sometimes.  Then again, this is Sweet Pea aka Little Turd we are talking about.

One thing I discovered is the amount of paperwork which keeps appearing is simply absurd.  For awhile it seemed like for every document I completed and submitted, five more appeared. And just when you are sure you are done...well...all I can say is, do not get too cocky.  Just today I found two more documents I need to complete and reminded myself of another item on the to do list I have been putting off.  Plus, I am still working on thank you notes for all the flowers, donations, cards, food, and everything else everyone did for both Sam and I. It is going to take awhile, mostly because my motivation level just is not what it used to be.  Eventually it will return.  

Also today a colleague voiced concern about me coming home to an empty house every night. I found myself telling her that it is okay because I just truly do not feel like being very social right now.  Like I mentioned before, I am staying very busy, but it is just me, or just me and Sweet Pea.  It is difficult to explain and I do not want anyone thinking I am sitting around feeling sorry for myself and crying my eyes out because that is not the case.  Mostly I just do not feel like talking to anyone, although I am always pleased when friends or family call even if I do not answer.  From what I understand, this too shall pass.  It is just part of the grief cycle and I have to let myself go through it. Book club is this weekend as is the Breath Easy Breakfast, so I will be getting out and about with my girlfriends and I am really looking forward to both events.

More than anything, I miss making memories with Sam.  People keep commenting on how much we crammed into the time the we had together.  We truly did a lot and created a boat load of memories.  Unfortunately, I am the only one enjoying the memories, yet I am so very grateful I have them and no one can take them away from me.

Plus, I think Sam is standing on the Oregon sidelines, if you know what I mean.  I am sure God and he had a long talk about how it is high time his Ducks won the BCS.

q'ua

A man is a success if he gets up in the morning and goes to bed at night, and in between does what he wants to do. Bob Dylan

I am told the pain lessens as time goes by. In fact, I know it does.  Just wish time would hurry up. Each day I miss Sam just as much as the day before.  How I handle it, though, improves each day.  I could ramble on and on about how much I miss him, so I will not bore you with that.  Just suffice it to say, every day is subtly different, not easier, just different.  There is an overbearing sadness within me yet I do my best to focus on happiness.  It is not only what I want but what Sam would want as well.  Make the most of each and every day...it is what we all should be doing

Tomorrow is a new day and I cannot wait to see what it brings.

q'ua

Perhaps they are not stars in the sky, but rather openings where our loved ones smile down to let us know that they are happy. Eskimo proverb

Today marked four weeks since Sam passed.  It almost seems surreal to me.  Several times throughout the day I find myself wanting to text him to tell him something or ask his opinion or just to say hi.  Each time it almost startles me to realize he is not here anymore.  I do still talk with him, though.  If I listen closely, he does respond...or at least, that is what I chose to believe.

Slowly I am responding to all the flowers, plants, cards, emails, calls, and texts I received from all of you.  The support I received is almost overwhelming and deeply appreciated.   My family (Glass and Evans) received a great amount as well.  Thank you for your kind thoughts, words, and prayers.  The two celebrations of life proved to be very different, each providing a closing to various chapters of Sam's life as well as a celebration of his passing on to the next.

For all of you wondering, I am staying in Alaska.  Sam and I became Alaskans the minute we crossed the state line.  It is our home.

As to what is going on behind these closed doors?  Well, his clothes are still in the closet and dresser.  One of his Oregon sweatshirts is still draped over the back of a dining room chair, right where he left it.  His shoes are still tossed in a corner in the bedroom. Many things are still in the same place as they were before.  Yesterday I made my first Costco run in two months and I also did laundry for the first time in a couple weeks, both of which forced me to put some things away or move them around.  I have no idea how long I will keep his things with me, but I will not be doing anything with them until I am ready and not a minute before.

If I sound angry, I guess I am a little bit because those questions were asked of me in the first week he was gone.  I admit, I was caught by surprise.  Everyone grieves differently, though, as well as survives differently.  For me, it gives me strength to have Sam's things around me, makes me feel like he is still here with me.  I talk with him every morning and every night and it makes me feel good.  One of these days I might wake up and decide today is the day to give his clothes away, but then again, it might not ever happen.  I just do not know so I am just taking it one day at a time and doing the best that I can, continuing, and building upon, the life we built together.

Admittedly, it does help that my Denver Broncos are kicking butt.

q'ua

Imagine that, how sweet it'd be To have you here again with me Oh lord, I wish I had you back But all I can do is imagine that. "Imagine That" lyrics by Don Williams

Tonight one of our friends posted this on Facebook and it was the first thing I saw when I logged on.  It truly is the only thing I can do.  My heart hurts in ways I never thought it could.  Yet, sometimes it seems like it is all a dream.  Sam should be here with me, taking the trailer out for one last weekend, camping in the rain, getting ready for football, wondering if there is going to be termination dust on the peaks when the clouds finally rise, and every other little thing I am now doing alone.  Yes, I truly believe he is here with me as my angel, but I want to be able to reach out and touch him and that is not possible.  Evenings, nights and weekends are the hardest because those are the times I spent exclusively with Sam.  Most of the time, there are no tears, just an aching pain that will ease with time but more than likely will never go away.  I do not want anyone to feel sorry for me, I just want people to understand that just because I am not in tears does not mean I am not grieving. Sometimes the tears come suddenly and quite unexpectedly and other times, I am prepared for them because I am learning what triggers them.  Tonight as I left our "adopted Alaska parents" house, I felt tears because Sam would have had so much fun with them this evening.  I know he was there in spirit, though, because I felt his presence several times throughout the evening.  

q'ua

Death is no more than passing from one room into another. But there's a difference for me, you know. Because in that other room I shall be able to see. Helen Keller

For Sam, passing from one room to another means he is no longer in pain and suffering.  For several days prior to his peaceful passing, he struggled mightily against the pain he experienced.  I cannot tell you what it did to my heart and soul to watch and to listen to his battle.  At times I could not bear it, nor could anyone else around, Brian, our pastor Ron, and others.  Many many thanks to our friend, Dr. Mike Kirkham, who provided me the guidance necessary to work with hospice and request the things Sam needed.

Personally, I am doing pretty good.  As I have mentioned to many people, Sam and I have had four years to grieve and prepare for this.  No, it does not make it any easier, but the grieving is not as intense.  Yesterday I had several "moments" as my mother refers to them, but to me, that is to be expected.  I allow the moment to happen, experience it, and move on.  More than likely these will continue to happen to one extreme or another for the rest of my life.

I miss Sam more than I can put into words.  My life consisted of Sam, the cats, work, and a little bit of me for the past four years, and actually, our entire marriage, long before we knew Sam was sick.  Half of me is now gone so I have this huge void.  Last night I wandered aimlessly around the condo before finally forcing myself to go to bed.  Sweet Pea followed me in my wanderings as she is even more confused than I am.

A Celebration of Life is scheduled for this Saturday, August 31, at the First United Methodist Church in downtown Anchorage at 10:00am.  A second one is scheduled for 1:00pm, Saturday, September 14, at the United Methodist Church in John Day, Oregon.  His ashes will be interred at the Fort Richardson National Cemetery here in Anchorage at a later date, yet to be determined.  There will be an obituary in both the Anchorage Daily News and the Blue Mountain Eagle.

Sam spent many hours volunteering at the Anchorage Animal Shelter and he asked that donations be made to it or the American Lung Association - Alaska.

q'ua

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

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

Happy Birthday!

Seems Sam had a pretty good day today, several phone calls, lots of cards, and just general good wishes.  Thank you to everyone!  He wanted to write individual thank you cards, and I hope you do not mind, but I talked him out of it.

He took himself outside today for a bit of sunshine while I went to the office.  Apparently it took a lot out of him, much more than he anticipated.  This evening he acted like he would not be doing that again, but...well...it is Sam we are talking about here.

Tomorrow is the appointment with the VA primary physician in the morning and the oncologist in the afternoon.  He is still talking that he is going to say no more treatment.  We all need to keep in mind, though, that even if he says no more treatment for now, he could change his mind at some point.  It all remains to be seen. No matter what he decides, it will be the right decision for him and I will support it 100%.

As for me, Alaska is one big tinder box right now.  If you live in Alaska, please be very careful.  Today I received a report of a small fire on CIRI land along the Kenai River.  15 more feet and it would have been a disaster, made even more so because the area is located between Kenai and Soldotna.  Crazy thing is, there is no need for campfires right now anyway.  Daylight lasts until the wee hours of the morning and the temperatures are extremely high for us.  And remember...you will be found if you are the guilty party.  Be safe and be smart.

q'ua

We keep moving forward, opening new doors, and doing new things, because we're curious and curiosity keeps leading us down new paths. Walt Disney

Today proved to be a rather easy day.  We ventured out to Walgreen's for those special socks to help with the circulation in his legs.  Also ran into Fred Meyer for a few minutes.  The trip out felt good for both of us but caused great pain for Sam getting in and out of the truck.  Slowly we are developing a routine of how to travel with the wheelchair and oxygen.  We are both so grateful he does want to get out in the fresh air.

Late last night we discussed what the most important thing is right now and decided it is the pain in his hips, pelvis and leg from the cancer.  The pain is so great, Sam struggles to manage it with the pain meds.  When we meet with the oncologist on Tuesday, that will be the focus of our discussion - or at least that is the game plan today.

Tomorrow I will be going into the office for a couple hours in the morning.  That will be a challenge probably more for me than Sam as I will be worrying constantly about any issues he might have, such as twisting the oxygen tube around the wheelchair.  Oh boy!

And in case anyone is wondering, I am a member of the best book club ever.

q'ua

“Ah! There is nothing like staying at home, for real comfort.” ― Jane Austen

Sam is as comfortable as can be for now.  The pain in his hips and pelvis is almost impossible to overcome.  Every little movement seems to send pain shooting through his entire body and in turn, he struggles to breath even with the oxygen.

Today he enjoyed a great visit with our minister, Ron Myers, from First United Methodist Church in downtown Anchorage.  Come to find out those two have more in common than we ever imagined.  I let them chat and did my own thing, I think it was a nice break for both Sam and I.

Yesterday Sam received flowers, a balloon, and an adorable stuffed dog from his friends, Berna and Jovy, who live in the Philippines.  They were on Sam's staff when he worked at NetSuite in San Mateo, CA.  It was a wonderful surprise and certainly brightens up our tiny living room.

As for me, I am starting to think of the oxygen as background white noise so that I do not even hear it most of the time.  Yeah for me!  I admit, though, I am getting a little depressed about not fishing.  Just saw pictures of silvers caught on the Little Su, our favorite fishing spot.  Today was opening day and they limited out.  My goal is to get Sam strong enough that we can go out at least one more time camping and fishing, but as of right I just do not see that happening.  Might be able to get him to a cabin, although it will need to have electricity!

q'ua

“Life is full of beauty. Notice it. Notice the bumble bee, the small child, and the smiling faces. Smell the rain, and feel the wind. Live your life to the fullest potential, and fight for your dreams.” ― Ashley Smith

It is now the middle of summer in Alaska and thank goodness Sam is no longer in the hospital, although I certainly could have used one more day to prepare for him coming home.  Because of the pulmonary tumors, the blood clots and who knows what else, oxygen 24/7 is the name of the game with a wheelchair as the primary transportation.

Last night I, for one, did not get much sleep.  He continually pulled off the oxygen in his sleep.  One would have thought he would be used to it after a week in the hospital with it, but apparently not.  Whenever it got pulled off, Sam started struggling with his breathing which, in turn, woke me.  Usually without waking him I was able to put it back on.  A couple times, though, he did wake, look at me, try to figure out what was happening and just go back to sleep.

Any movement at all causes Sam to lose his breath.  He probably spends a good 10 minutes each time he moves catching his breath before moving again.  This process is exhausting and Sam is finding many ways to avoid any movement.

Today we spoke with the VA case manager and the insurance case manager.  Next week an assessment will be made for Sam's needs but for starters, someone will be coming in 2-3 times a week for 2-3 hours each.  As to when that is starting, I have no idea.  Could be Monday for all I know!  Anyway, things are moving, which is good.  In addition, my book club friends are helping us by preparing some meals.  I cannot tell you how much I appreciate this.  It is awesome.  And yesterday, the neighbors all pulled together and moved our couch and coffee table out of the condo into the hallway.  WOW.  What a difference that made.  Sam did not understand why we needed it moved, but I think he is beginning to understand.  Now to just find someone to take it away.

The dumbfounding moment of the day was the oncologist's office calling to confirm Sam's continuation of chemo on Tuesday and follow up appointment with the PA (not the oncologist).  The look on Sam's face was priceless.  He politely said, no chemo and appointment with the oncologist only.  Neither of us can believe it yet.  Anyway, we will meet with him Tuesday afternoon at which time (as of right now anyway) and Sam is going to tell him no more treatment.  Personally I think the oncologist is going to be shocked when he sees Sam and the change in him since the last time they spoke.

Sam asked me to take him outside for a few minutes today.  It was pleasant and we took Rocky with us.

It is so difficult to see the tall athletic and energetic man I love slowly deteriorating.  It is even more difficult to not let him see my tears and hear my fears, even though there were several times this week while he was in the hospital when I just could not hold back any longer.  I am glad he is home with me because no one knows how much longer he will be.  

Thank you everyone for your support this week. I would have never made it without you.

q'ua

Happy Birthday, Sam!

Just a thought.  Sam's birthday is Monday.  If you would like to help him celebrate, how about a fun birthday card?

Sam Glass
1201 Denali Street #307
Anchorage AK  99501

Please note, this is a secured access building.

Big news.  The doctor just discharged him with the words of " you have a very special situation.  You need to be home where you are comfortable for whatever is the remainder of your life."  It was very kind.  We will be headed home in an hour or so.

Today the doctor decided Sam is to start practicing with the wheelchair to see where his oxygen levels are at and to see if he is ready to go home.  I think he needs the oxygen, Sam thinks he needs the oxygen, the doctor thinks he needs the oxygen, but as we all know, what we think and what the insurance thinks are generally two different things.

I asked the doctor point blank (out in the hall away from Sam!) if this is a hospice point and his response was "not for the blood clots but you should talk to the oncologist about the lung cancer" since that is what is really affecting his breathing.  The doctor believes the clot in Sam's lung is slowly dissipating and how he is able to tell that is beyond me.  He quickly qualified all this, though, by reminding me things can change on a dime (no duh) and we will just have to wait until tomorrow to see how things go.  The doctor also said that what they are doing at the hospital is no different than what would be happening at home...well...I beg to differ because right now there is no oxygen at home, no nurses to stay with him while I run into the office, etc., etc., etc.  I spent some time making calls to the social services department at the hospital as well as the VA so we could get things up and running. Personally, I want things in place before Sam gets home because once he is home, there will not be time to do all these things....like rearrange things to make it easier for him to get around in a wheelchair in our tiny little condo.  Does anyone want a perfectly good queen-size sofa sleeper which has been tenderly loved by the cats on the sides?

Just to give you an idea as to his oxygen level and his shortness of breath - when he sits up on the side of the bed, he needs to rest about 10 minutes catching his breath before he moves to the next position, regardless of whether it is standing up or moving into the recliner which is right next to his hospital bed.  And people wonder why I am concerned.

It is exciting the doctor is thinking about sending him home, but I do not want him here until the time is right.  I have said my peace at the hospital and I am not too sure anyone listened.  That will be determined tomorrow.  One thing is quite clear, I cannot discuss this in front of Sam.  He will make his symptoms disappear if he has any inkling I am concerned about him coming home.  It is odd, though, that I am at peace with the lung cancer issue, but not with the blood clots.  I have thought this through, but I am not ready to discuss it here yet.  Way too emotional.

Anyway, it is now 10:11pm and I need to go fold laundry and get other things done to prepare for him possibly coming home in the next couple days.  And all I really want to do is go to sleep.  Which I might do anyway and just ignore the laundry for now.

Happy Birthday to my mom and to our son, Alex, both of whom turned 21 today.  :)

q'ua

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34

Each day is a new day!  Today the doctor visit proved to be a bit more informative than we anticipated.  Yesterday and this morning the nurses focused on asking Sam about going home.  When I heard that, I about had heart failure myself.  Luckily, when the doctor showed up, he put a stop to it all in one sentence.  Sam is not to do any excessive movement due to the clot next to the right side of his heart.  Any excessive movement could cause a massive coronary and that would be that.  The right side of his heart is working hard to do what it is supposed to, only it cannot.  This leads to the left side of the heart needing to basically work overtime.  Hard thing is, the left side is dealing with pulmonary tumors which have more or less flattened some of the veins and arteries. Sam's situation is much more dire than either one of us imagined.  The doctor does want him to slowly begin moving, starting with just going from the bed to the bathroom and that is only if he can do it without losing his breath. The doctor does not want Sam (as of this morning anyway) to even think about going home until he is able to walk around PCU without needing to rest.  This might be a long haul.  Then again, he might get up tomorrow and be able to do just that.

I go from being scared out of my mind to being as positive as ever that he will be up and running in a few days.

Tonight Sam is complaining about a lot of pain.  He just told the nurse he experienced a wave of pain that shot through his entire body and felt like knives stabbing him.  Now the pain seems to be focused in the hip area and feels like pins and needles.  His pain level hovers around 8-9 which is rare for him.  Normally it is about 4.

For those of you wondering, yes, I am eating - probably much more than I should.  I also am getting out of the hospital for a few hours each day, continuing to work from Sam's room and then going home at night, returning early in the morning.  If you have never had the pleasure of a hospital experience, in order to be present during the doctor's daily visit, you need to get here early and then practice patience because you never know when he or she is going to show up.  No fault of their own since there are many patients to see, but this OCD person would sure appreciate a schedule.

q'ua

Well...you've certainly had all kinds of birthdays in your life. Sam talking to me tonight

No kidding (sarcasm at its finest!)  Sitting in a hospital room is certainly not what I have ever anticipated for my birthday.  However, I am not surprised because my dad has historically had his major heart surgeries around Thanksgiving.  My family has enjoyed several Thanksgiving meals in hospital cafeterias.  Anyway, I digress.  As usual.

The hospitalist who began his work week today finally understood about Sam's pain meds schedule and got things adjusted accordingly.  The weekend staff chose not to listen to what Sam said about his routine and attempted to wean him off of some of his meds.  Oh boy.  I am proud to admit I stayed quite calm during that discussion this morning.  His pain level, though, is continuing to fluctuate and he began complaining about the right side of his chest again late this afternoon as well as his right leg earlier today.

When I returned from lunch at the office, the social worker was here.  Caught me by surprise but her role is to help make sure Sam has what he needs when he gets home.  She is supposed to work with the VA on all kinds of things from a personal assistant (hey, I need one of those too!), a walk-in bathtub and a variety of other things.  We will see how that plays out.

Tonight his color is good and mood is ok.  His left leg is still quite swollen and his right leg is now starting to look that way as well.  Not good.  Sam's trying to walk using a walker but putting any weight on his left leg is completely impossible as of right now.  He needs to walk in order to get his circulation going.  Just a vicious cycle.

So...we are still here.

For everyone who wished me a Happy Birthday today (as well as called...Mom & Dad, Virgil & Mary), thank you so much.  Made the day much more enjoyable.

q'ua

Sam's pain is much better today, probably a combination of pain meds, blood thinners and whatever else he is being given. The swelling in his left leg seems to have gone down a bit and it is not as hot as it was yesterday. He says the knives which were pricking him in the chest have also decreased, but again, do not known if it is the meds or the painkillers or a combination of both.

The RN did give me a shock when he was in. Sam's blood counts are off and if they do not get resolved, it is possible he will need a transfusion. They will be doing full blood tests again tomorrow so we will know more then.  More than likely this is from the chemo, but as with everything else, hard to know for sure.

Sam's mood is much better than yesterday, too, for which I am extremely grateful.

Thank you everyone for all your kind words of support. They are greatly appreciated. Sam needs to get better because silvers (Coho) will be in soon and they are calling our names!

q'ua

Writing this from my phone so I apologize in advance for grammar and spelling!

Sam was admitted about 1 today to Alaska Regional. He'll be here for 2-3 days at least as they work through everything that is going on. Hia spirits are good but he is in a great amount of pain. They are doing what they can and are treating him very well. Also waiting for cultures to come back because there is also an infection as he has a fever which is quite rare for him.

Yes, in answer to those wondering, I have been home, showered, rested and am now back at the hospital.

The RN did get right down in his face to tell him what a lucky guy he was to still be alive. Not sure it got through to him because of his meds, but she is right...he is a lucky man.

Thank you for your thoughts, prayers and support. Makes a huge difference.

q'ua

In a battle all you need to make you fight is a little hot blood and the knowledge that it's more dangerous to lose than to win. George Bernard Shaw

So much is going on, I am not sure where to even begin.  Nor can I remember where I left off.  As I  previously noted, Sam's left leg is giving him trouble.  One night a few weeks ago, he showed it his very swollen ankle.  Surprise!  Shortness of breath also became an issue, so much so last week we were in Seward for my work and he insisted I bring him back on the 4th.  Little did I know he planned to call 911...and what a shock I got when I decided to take advantage of coming home for a short bit to take a quick shower and find out as I am walking out of the bathroom wrapped in towels that he called 911 just before I got out.  Hello.  Admittedly, my first thought was, (my Anchorage girlfriends understand what I am saying here...) oh boy, AFD is coming to visit and here I am.  Quick!  Get dressed and comb out the hair!  Took me about 20 seconds compared to my normal 20 minutes and that is before the blow dryer comes into play.  Then I realized I probably should be worried about my husband, which of course, I was...but AFD was coming to visit!  The paramedics who showed up were so kind and gentle with Sam, it really did almost make me cry.  By the time they arrived, Sam's breathing had relaxed, so his vitals were actually quite good.  Because he did not mention his leg, they told him that the shortness of breath was probably a result of the progression of the cancer and that even if they took him in, there was probably nothing anyone could do.  Which, in the grand scheme of things, is very true.  Would have helped if he had told them about his leg!  And by the way, just because I am standing there does not mean I have permission to speak, don't you know?  Anyway, long story short, at chemo on Tuesday he finally showed the physician's assistant and the nurses his oxygen levels went crazy whenever he moved, lowering to the low to mid 80s.  Not good.  But...again...everyone continued to insist it is due to the pulmonary tumors in his lungs because he still does not mention his leg.  ARGH. If only I could have a few minutes with the staff....

Last night, after checking his oxygen content several times, and then asking me to wake him when I got up for work this morning, he promised to call the doctor and tell them everything.  So off to work I go, and in the middle of my 11:00 meeting, I receive a text...doctor appt at 2, need ultrasound first, have to check in at desk by noon.  Luckily, my meeting is close to home, I make it there in about 2 minutes flat, get to Regional in record time (all the while the back seat driver sitting next to me is telling me which route to take through Fairview to get to Regional the fastest, but please do not speed, ok?) We get into Radiology and I am watching the ultrasound and I am seeing what I expected to see...a blood clot.  Not just a little one, either. It extends from just above the left knee to just below mid-calf.  Sam is so very lucky.  I pray we caught it in time.  When he received the results, he said..."so it is true."  Twice a day he is to inject himself in the belly with enoxaparin for 10 days.  Tuesday, unless something happens before then, he goes back in for one final chemo treatment this round.  Monday, this chickie is calling the doctor and chatting with him because today he was told by the staff it is due to him sitting in the wheelchair all the time. HELLO!  The reason the wheelchair is even here is because of the pain he experienced when standing on the leg.  I do not know who to be more angry with at this point, Sam for not telling everything (but, in his defense, he is on heavy pain meds, so he is lucky to remember his name at times) or the staff for being so...so...so I don't know what!  Anyway, I am calling the office on Monday.  Sometimes a girl's gotta do what a girl's gotta do.  Even Sam commented on the way back from the VA pharmacy that the blood clot might have been around for a couple months or longer.  No kidding.  Ok, the sarcasm is starting to show through, so I better get off this subject and talk about something else.

Tomorrow is Fairview's (our neighborhood) Block Party.  If Sam is up to it, we are going to head on over during our Saturday stroll.  This summer's weather has been amazing, even the week of rain we had.

CIRI property at Crooked Lake

As for me, work continues to be extremely busy.  Summer is field season and my job is to deal with land access matters, including educating everyone that CIRI is a private company which means CIRI lands are private lands, not public lands.  It is a common misconception that the ANSCA corporations, especially the regional corporations, are public agencies.  They are not, never have been, and never will be.  Everyone needs a permit to be on CIRI and/or its villages' lands.  Does not matter who you are or what you are doing, you need a permit.  They are extremely easy to apply for and relatively easy to get (unless it's a big project and those tend to take awhile). If you do not have a permit, you are in trespass...meaning even those people who believe Fire Island is public land.  Just putting the word out.  In a couple weeks CIRI's Land Department is beginning a huge public education campaign.  Even if we can get this message through to one person, we will consider it to be a success.  So Alaska friends...take note, please.

Did I mention AFD came to visit?

q'ua

It is the evening of the day, I sit and watch the children play; I sit and watch as tears go by. Mick Jagger, Keith Richards, Andrew Oldham

Yes, I am living in nostalgia this weekend as it is the Evans' family reunion which once again, I am not attending. So, I am feeling quite sorry for myself knowing the fun that I am missing. My cousin Peggy was an extremely talented musician and I used to make her play this song for me over and over again so I could sing it.  Luckily she was extremely patient, plus she loved to play and sing herself so it worked out well.  She is now in heaven and I am sure she has everyone rocking and rolling now right along with her.

Out for an afternoon stroll.

Sam is doing pretty good.  After many months off from any treatment, and after discovering that the cancer is once again spreading rapidly, Sam decided to try another line of chemo.  This time it is Gemzar which originally was for breast cancer but is also used in other types which have spread like Sam's has. Once a week for 2 weeks, then one week off, and then it repeats. His pelvis, hips and left leg are pretty much, as he puts it, like Swiss cheese.  Walking is almost impossible, therefore 3 weeks ago the wheelchair became a household staple.  He uses a cane in the condo and a wheelchair whenever we go anywhere.  It is painful for him to walk and painful for me to see him grimace in pain.

He did tell the doctor and me that if he does not see an improvement in the hips/pelvis/leg, he sees no reason to continue the chemo.  Personally, I would rather he not be on it as his quality of life really suffers which in turn means mine suffers as well.  I do not want to go through another summer like last year, if it can be helped.  One nightmare is more than enough in my opinion.

The other night we had a lengthy discussion about where this is probably going to lead.  He mentioned hospice and, well, I can completely understand why.  He is struggling to breath, struggling to walk and struggling to cope with the pain.  Going on hospice, though, only means that the pain management will increase and all other treatments will stop.  Sam could be on hospice for a long time.  Then again, as we all know, it could end tomorrow.  If nothing else, Sam has done his best to make the most out of his situation.  The minute the wheelchair was delivered, he was online ordering a camera, flag, gloves and a variety of other gear.  Crazy man.

As for me, summer is in full swing meaning work involves long days of site visits.  The thing about Cook Inlet Region, Inc.'s land is that there is a lot and it is cookie cutter, meaning it is all over the place.  Takes a lot of time driving, flying or whatever to get wherever I am going, but I love every minute of it.  Have not yet had an opportunity to go fishing, but hope to sometime in the next couple weeks.  The freezer is empty!

q'ua

When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love. Marcus Aurelius

Tomorrow is a big day for us.  Picking up a permanent handicap parking permit and Sam is having a light weight wheel chair delivered, one with big back wheels so he can get around on his own.  Tonight he seemed a bit testy and I am certain it is due to tomorrow's events.  It will be an interesting day.

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment. Buddha

Sam received his test results today and I am only partially aware of them as once again, I did not get invited to the doctor's appointment (it is that control issue thing many terminally ill patients experience.)  There is fluid in the left lung.  This news caught me totally by surprise.  Interesting thing is, that is about all Sam shared with me.  Tomorrow I am expecting a copy of the report in the mail, so hopefully I will find out more.  Then again, maybe I do not want to.

Tonight Sam, in passing, also said he might have a stress fracture in his left pelvis/hip/femur area.  The challenge with this is there has been no X-ray or MRI done, it is just the level of pain he is experiencing in that area each time he moves.  If he keeps complaining of the pain, I am going to insist we go back to the ER.

Sam is walking with a cane for now as is putting forth such a great effort to keep on going.

As for me, I am having a difficult time right now.  I so desperately want wish he was going to be ok.  As my mother says, I'm just having a moment, I'll be ok in a few minutes.

q'ua

You gotta love livin', baby, 'cause dyin' is a pain in the ass. Frank Sinatra

Yes, the posts are getting few and far between and for that, I apologize.  It is difficult to write when it is the same thing over and over again.  The pain is getting worse.  Much much worse.  Tonight, for example, the amount of pain Sam is in is almost too much for me to bear. The radiation proved to be ineffective, at least so far.  The entire left leg is in pain and Sam is unable to lift his leg by itself, he must use his hands to help lift.  The talk now is of getting a walker or a wheelchair as he is unable to walk or stand without any pain.  We expected possible issues from his back, but not from his leg.  It is heartbreaking.  The amount of pain meds also increased at the last appointment and I am now thinking the next appointment might even bring a whole new ballgame.

Sam, Dara, Gina, Mitch
and the Alaska Railroad Hurricane Train

The Mighty Susitna!

On a happier note, Sam's sister Gina and
partner, Mitch, came for a visit over Memorial Day.  They met us in Talkeetna where I worked all last week.  One of the activities we wanted to do was jetboat up the Susitna River through Devils Canyon.  Well...if you have not heard...summer did not arrive in Alaska until late last week.  The river did not begin break up until Saturday.  Instead, we rode the Hurricane Train, basically the local service, to and from Talkeetna.  We almost did not make it back to town because the ice was coming up over the track.  Oh boy!  But, the river subsided enough for us to safely return quickly.

Thank you to all who sponsored myeslf and/or members of the Glass Half Full team in the 2013 Alaska Clean Air Challenge.  WOW.  What a ride.  Next year is going to be even bigger and better, so if you have any desire whatsoever, the Glass Half Full team would love to have you join us.  The first day was a blizzard and the second day was sunshine which made the ride that much more challenging for those who chose to ride on the first day.  Brakes, tires, gears, everything froze up so most people rode in one gear for a good part of the way, if not all of the way.  It was amazing.  Glass Half Full raised the most money as a team and, thanks to all of you, I managed to raise the most funds individually with 3 of my team members raising over $1000 each as well.  We broke records this year.  Alaska is one of the remaining states in which smoking is allowed in some workplaces throughout the state.  I will not get into the craziness of how this all works, but in the 2014 legislative season, the Alaska Chapter of the American Lung Association will be working hard to make it illegal to smoke in any and all workplaces throughout the entire state.

Glass Half Full - Joann, Kimi, Ellie, Cindi & Dara
2013 Alaska Clean Air Challenge

Just so you know, as I sit here looking at the thermometer on our deck with the sun shining directly upon it...it reads 100 degrees. Yikes.  Thank goodness it is only because of the location of the sunshine.  Otherwise, it is probably about 70 out and very, very sunny.  At least for another day.

q'ua

May your trails be crooked, winding, lonesome, dangerous, leading to the most amazing view. May your mountains rise into and above the clouds. Edward Abbey

Summer!  Or at least...what might possibly be summer, I think...hope...PRAY!  This weekend is the inaugural camping trip regardless of the weather. Sunshine would be awesome.

Sam is doing ok.  Radiation on his upper left femur lasted for ten days and he says he has yet to notice any real difference in the pain level.  That is not good news, yet the doctors say it could be awhile before any effect is realized.  Luckily, Sam is still maintaining a pretty good mood and I am very greatful for that.  He does get grumpy every once in a while, but that is usually indicative of him needing to eat.  Or maybe it is indicative of me needing to eat!  I digress.

Sam on Bird to Gird trail.

The pain meds add a level of fatigue which is difficult for me to deal with.  Normally, Sam is up and ready to go on weekends, but not anymore.  This past weekend it finally occurred to me that I am more bummed than I realized about the fatigue.  Another light bulb moment in my life.  Overall, though, each day I do see an improvement in his energy level and that is an awesome thing.

Other than that, the past few weeks proved to be rather uneventful except for a short walk we took on the Bird to Gird path a few weeks ago.  A simply beautiful day to be out on Turnagain Arm.

As for me, I am training, or at least claiming to be training, for the 2013 Alaska Clean Air Bike Challenge.  Only 11 more days!  And no, it is not too late to donate - http://action.lung.org/site/TR?px=4777818&fr_id=6580&pg=personal.  Or to just come ride with us.

Q'ua

Hope in reality is the worst of all evils because it prolongs the torments of man. Friedrich Nietzsche

True.

Today marked the final day of radiation on Sam's leg.  With that came two doctor appointments and this evening I am slowly being informed of the day's consultations.  Here is what I have learned so far:

1.  It is going to be awhile before he notices a change in his leg.  Hmmm...wonder how long "awhile" means?
2.  He is not to bend, squat, or, if he can avoid it, even walk as the doctors are now "intensely" concerned he will fracture his leg.
3.  The leg cannot handle anymore weight, in fact, Sam should lose some.  Not sure what the definition of "some" is.
4.  Sam and the medical oncologist are still discussiong whether or not to go back on the Xgeva.  If he does, it might involve Sam giving himself the injections. The doctor is not at all excited about this.  Nor is Sam's wife, if anyone is asks.
5.  He is finally figuring out the correct pain management system.

As for me, I realized tonight I am exhausted.  There.  I said it.  Now I am going to bed.

“What good is the warmth of summer, without the cold of winter to give it sweetness.” ― John Steinbeck, Travels with Charley: In Search of America

Today is absolutely beautiful here in Alaska.  Blue skies, snow on the mountains, snow on the ground quickly melting!  Sam and I drove to Willow so I could check out the bike path from Houston to Willow.  The Alaska Clean Air Challenge is in 34 days and I sure hope the snow is melted by then.  The bike path still has quite a bit of snow on it.  It is not too late for you to join us in the ride or, if you would rather not ride, to donate and help me meet my fundraising goal.  This year's ride seems to be affecting me much more deeply than last year, probably because Sam's cancer is progressing but yet he is still here with me.  I am so very grateful for that.  Here is the link if you would like to donate or ride with the Glass Half Full team - Dara Glass - Alaska Clean Air Challenge 2013 - just click on the "Donate to My Cause" button on the upper left hand side and you should be good to go. To all of you who have donated so far, thank you from the bottom of my heart!  And to Joann, Cindi and Ellie, we are going to have a fantastic time!

Freezer's almost empty, cans are almost gone -
good thing fishing season is almost here!

Sam is doing ok.  He is in radiation for his upper left femur.  Three more days this week and then he is done for now.  He says he does not notice a difference yet in the pain level which is different from previous radiation treatments when he noticed a difference right away.  It will be interesting to hear what the doctor says about it.  This week we both have been somewhat challenged in wrapping our minds around the situation.  Possibly for the first time since the initial diagnosis we are both at the same place at the same time with understanding where things are at.  We still go back to the "hope for the best and expect the worst" in order not to get our hopes up and to continue living each day to the fullest.  The hard part is that in living each day to the fullest, Sam cannot come anywhere close to what he was able to do last summer, let alone 3 summers ago.  He does his best, though, and I cannot ask for anymore.  Several nights this past week I cried myself to sleep because of where we are at.  Knowing he is not going to be able to do many of the things he loves to do this summer breaks my heart.  Apparently he experienced several sleepless nights this week because of the same thoughts.  He is bound and determined to do what he can, though...like sitting on the Ninilchik beach enjoying the view and watching the setnetters.

As we keep telling ourselves and everyone else, it is not as if we can just flip a switch and turn it all off.  Darn it all anyway.

Q'ua

“Pick the day. Enjoy it - to the hilt. The day as it comes. People as they come... The past, I think, has helped me appreciate the present, and I don't want to spoil any of it by fretting about the future.” ― Audrey Hepburn

Well, here I sit, trying to put into words my world and not having much luck at it.  Sam and I went to Tok and Fairbanks over the weekend, enjoyed every minute of it, ate at Fast Eddy's, watched some of Tok Sled Dog races, drove through some hellacious snowstorms, froze our butts off, listened to a semi idling just beneath our hotel window all night, drove into Denali as far as we could, and rushed home Sunday for Sam's CT scan and MRI on Monday morning.  The doctor's appointment, scheduled for late this afternoon, got cancelled by the doctor himself who called Sam directly about the tests. Oh boy.  But before I get to that, I need to back up a few weeks.

On the shores of Kauai.  Oh how I wish we were there again!

Friday, March 8, my cell phone rang just as I walked into my office from a meeting.  Normally, I always have my cell phone with me, but this particular time, I did not take it to the meeting with me,therefore, I did not see the text Sam sent.  The text said, "I'm sorry but I need you to come home."  Well, guess what, he called as well (smart man) and all I heard was, "I need your help, you need to come home."  As I ran down 5 flights of stairs and across the parking lot to the truck, I realized I at least grabbed my bag since it had my keys because I did not have my coat, gloves, boots, nada.  Even better, very little traffic in my one mile flight home to quickly park and run back up 3 flights of stairs, gather myself as I ran down the hall to find my husband in the most intense pain I have ever seen him in.  Apparently, his pain had increased dramatically the previous few days and he decided to increase his pain pill dosage, unbeknownst to me, of course.  For those of you who are unaware, pain pills tend to make a person very constipated, so the more you take, the more constipated you become.  For Sam, taking more pain pills to manage the pain, in turn created even more pain because he became more and more constipated, creating a viscious cycle for himself.  By the time he called me, he could hardly stand up.  So, off to the ER we went and spent 6 lovely hours on a beautiful Anchorage afternoon with a wonderful nurse and doctor.  They pumped him full of fluids, gave him high potency laxatives and sent him on his way with the stern reprimand of "talk to your doctor about your current pain management program!"  Ok, I admit, I did snicker during that lecture but no one heard me, thankfully.  Nothing like a grown man lecturing another grown man.

Needless to say, when Sam saw his regular oncologist last week, they discussed the pain meds and adjusted them accordingly, taking into consideration the thoughtful and very helpful hint our personal friend, Dr. Kirkham, gave regarding pain meds. Sam is slowly becoming adjusted to the new meds, today realizing that they also help him breath better as he finds himself often taking short breaths trying to catch his breath.  Just another viscious cycle.

So, all that aside, we are now up to this week and the test results.  The CT scan and MRI show that the cancer is now eating away at his left femur.  In other words, his upper left thigh, which explains the increase of pain among other things.  Several times over the past few weeks, Sam told me it hurt to stand and to walk.  He is so brave because he refuses to let it take over his life.  The doctor called him because he is concerned Sam will break his leg, as am I!  The only thing that can be done for him at this point is radiation, palliative care radiation, not curable radiation, in hopes to slow the cancer growth and keep it from spreading further, or rather, eating away anymore of his femur.  More than likely Sam will go back to Xgeva treatments as well, a very mild chemo, for the bone metastasis.  All of this in hopes to lengthen his life span and help him maintain some semblance of a good quality of life.

Now that I wrote all this down, I feel much better, so thank you for listening.  People ask all the time if I am scared.  No, I am not scared, but I am worried.  All the time.  24/7.  But I cannot let it control me, so I push it out of my mind and focus best as I can on just living in the moment because, in the grand scheme of things, that is all one truly has.

In the past few weeks, a man who is like a second dad to me (I spent many hours at their house) was diagnosed with lung cancer.  His doctors were proactive and sent him in for surgery after discovering a small tumor in his lung.  Hopefully that is all there was and he will be considered a survivor for many years to come.  Another person who was a huge part of my sister's life was also diagnosed with lung cancer at the same time.  His diagnosis is not good as he has small cell lung cancer and still smokes.  Stop smoking people!  Please!

May 18 and 19 I am participating in the Alaska Clean Air Bike Challenge again.  I hope you will help me in my fight against lung disease.  http://action.lung.org/daraglass  Either help me meet my fundraising goal, or better yet, come ride with me.  Either way, we will make a difference.

q'ua