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