“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

"It has been a tough race. If you actually think this is fun, you have a problem." - 2004 Iditarod winner Mitch Seavey of Seward, Alaska

Iditarod weekend - one of the traditions Sam and I look forward to every year.  Sam surprised me this year by wanting to go to the start in Willow.  The past couple weeks Sam experienced intense pain in his lymph nodes in his neck and in his left hip/pelvis.  So we kept a slow pace today, missing some of our favorites mushers, but we at least got there and stayed for an hour or so.  The Iditarod committee spends a great amount of time each year reminding people to NOT bring their pets to neither the ceremonial start nor the actual start, including placing signs in the parking lot stating, "No pets allowed," and most people respect the request.  However...as we walked back out to the parking lot, a guy came towards us with an adult Irish setter/retriever mix and I could not stop myself.  I stopped him, politely explained pets are not allowed at the race...and do you know what he said to me?  Well, where can I take him?  HELLO???  Anywhere but here?  The Iditarod is a professional race with a ton of money involved and you want to bring your pet?  ARGH.  Anyway, he followed us back out to the parking lot with the dog.  Does it take a rocket scientist to realize bringing your pets to the Iditarod might not be a good thing or is it just me?  Ok, I will stop my rant for now as I am sure you get how I feel about this.

For those of you who would like to track the teams, www.iditarod.com is the place to go.  Sam and I are "Iditarod Insiders," as like I said before, we are completely hooked on the race.  We tell each other all the time it is a good thing we did not move to Alaska earlier in our lives because we would probably be out there ourselves.

Dara & Sam on the trip to Sitka, Alaska.

Back to Sam's current issues, we talked yesterday and he is going to contact his primary physician at the VA about the pains, especially the pain in the hip/pelvis area.  The reason for this is that the primary will hopefully send Sam to an orthopedic surgeon to look at the hip/pelvis and determine if it is worth the while to replace or at least do something to mitigate the situation.  If not, Sam will more than likely end up with some kind of patch which will work as a localized painkiller, such as Fentenyl.  Not sure how I feel about that, but if it is going to alleviate the pain he is in, then ok, let's go for it.

He is working hard to build back up his energy level and his strength.  Slowly but surely he is succeeding.  His moods are good, he is looking forward to the summer, and is making plans to do things, albeit not at the same levels as before, but fishing is only a couple months away!  Today he even discussed indepth with me an easier way to take the cats with us which completely surprised me.

Overall, Sam is doing good, although we both know the cancer is slowly progressing.  Yesterday during our discussion we both agreed absolutely no more chemo, although he might consider Zometa again for the bone mets.  What the Alimta/carboplatin did to both of us last summer is something neither of us ever want to experience again, especially since it is not a cure, just a growth management treatment, which may or may not be successful.  Just not worth it to either of us.

As for me, life is good.  Work is terrific (still!)  Fishing is right around the corner, even better.

q'ua

We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot. Eleanor Roosevelt

Tonight's conversation concerned a subject I am unable to completely wrap my mind around yet; although Sam voiced confidence in me to make the decision when the time comes.  My  mind, however, does not yet allow me, for whatever reason, be it fear, denial, or just flat out do not want to, think about having to make a decision regarding my personal wants or Sam's constant battle with pain.

After our return from Hawaii, we began a routine of me putting lotion on Sam's feet, legs, arms and back.  His skin is so very dry from all the radiation, chemo, drugs, and the crazy Alaska weather, it requires all the additional moisturization it can get.  Tonight he started talking about how much easier it would be to just put his body in a "box" with his head sitting on top, that it would just solve all his problems, the pain, the dryness, the cold and hot spells, whathaveyou.  I have yet to figure out what exactly is in the "box" he referred to, but he did emphasize his mind would still be functioning.  In my attempt to follow this conversation, I told him I am not yet ready for that as I want him to still be able to walk and live as normal as possible and that I do not know if I would ever be able to make that decision.  Sam responded by telling me he is confident I can and will make the decision when the time comes.  It suddenly occurred to me Sam is making every effort to live as normal a life as possible for me and at some point, I am going to find it necessary to tell him it is ok for him to stop.  Ohmigosh.  Are you even able to follow my rambling?  For the first time in weeks I find myself in tears knowing that Sam is continuing to suffer intense pain while trying to keep me happy.  It is more than I can bear.

Sam walking near Bird Point

On the outside, Sam really does appear to be doing great, but obviously, on the inside, he is truly suffering.  At some point, probably sooner than I anticipate, we will need to discuss a different way of managing his pain and that decision will definitely affect his quality of life.  I pray it is still many months away, if not years.  I guess that all remains to be seen.

February 15 is the 9th anniversary of the phone call which brought us together. Hard to believe it has already been 9 years.  I am so grateful he is still here with me.  My goal since his diagnosis has been our 10 year wedding anniversary, so he still has 18 months to go.  How dare I ask him to do that if the pain is too much?  Or perhaps by then, a clinical trial or a new targeted therapy will become available which increases his survival rate and improves his quality of life.  That would simply be awesome.

q'ua

No man needs a vacation so much as the person who has just had one. ~Elbert Hubbard

That would be me!  Although we just got home Sunday morning (very early, I might add) from our vacation, I am more than ready to go again.

Waimea Canyon aka the Grand Canyon of the Pacific

Sam handled the traveling fairly well, much better than either of us anticipated.  The snorkeling, on the other hand, proved to be a bit more challenging than he anticipated, but luckily he quickly figured that out.  Once we got home, the exhaustion set in and he is still recovering today, 2 days later.

Sam & Dara, Kauai 2013

Just before we left, Sam received the results from his last CT scan.  The doctor told him there was no change from the scan Sam had 3 months ago.  Honestly, I never know whether or not to believe this or not since I do not go to the doctor appointments with him, so I only have to go on what he tells me.  From my previous experiences at these appointments with him, I can say Sam often does not hear everything that is said.  But if he says there has been no change, that is what I go with.

So many things happened in the world while we were on vacation!  Just to name a couple:  My Denver Broncos lost a heart breaker - luckily it was the first full day of our vacation so I rebounded quickly!  Chip Kelly left the Oregon Ducks for the Philadelphia Eagles - Sam seems to be dealing with that just fine.  Priorities.  We will be yelling for the Niners in the Super Bowl because west is best, don't ya know?!  Plus, the Niners are Sam's favorite NFL team although Seattle ranks right up there, too.

Work is going really well for me, in case anyone is wondering.  I still feel the same about it when I was hired, it is like the job I have been searching for all my life; and now, I am no longer searching.

q'ua

Happy New Year!

A new year!  And as several people pointed out to me, this year is the first time since 1987 that the year is made up of 4 different digits.  Your trivia for the day.

13-3.  Broncos.  'Nuff said.

Christmas 2012

Sam and I enjoyed ourselves the past couple weeks, watching football, relaxing, praying for snow, watching football, praying very hard for snow, watching more football, and praying even harder for snow.  Anchorage received a bit and then after our long unending deep freeze, the weather took a crazy turn and we headed for a tropical punch.  Pretty crazy.  Some snow is still on the ground, but not much. And because we want true warmth and lots of sunshine, we made our plans the other night and Sam and I are headed for Kauai in a week or so.  Our apologies to all our friends and family on the mainland. This is a good time for me to get away because although work is very busy right now, in a few weeks, it is going to be even more so getting ready for summer.

Admittedly, I am slightly nervous.  Ok, more than slightly.  Sam's energy level is pretty much next to nothing and because I know I will drive him nuts constantly looking at him to make sure he is still breathing while we are on the plane, I need to find something to keep me very busy or just flat out asleep.  He mentioned last May we should make this trip but I did not dare follow up on it.  The last time we flew he experienced difficulties but hopefully this time he knows what he needs to do in order to not let those things happen.  He says he does and I believe him.  I think.

Friday is his 3 month CT scan since the chemo ended.  Next week we will learn if the chemo slowed the progression in his lungs or not.  Because of this crazy roller coaster ride we are on, I refuse to get my hopes up one way or the other.  Or perhaps a better way to put it is hope for the best and expect the worst.  That way, I will not be disappointed.

Christmas I experienced a few moments of wondering if this is our last together.  Granted, a person never knows when they are going to die, but most of us expect to live well into our 70s, 80s, and 90s, not our 50s.  I only allowed myself to go there a few minutes with Sam and then we both pushed the thought out of our minds and went on with the evening.  Unfortunately, though, the thought is always there.  I see it but I choose to only recognize it.  This was our fourth Christmas living with the cancer and each year is getting a bit easier.  Perhaps I am at a plateau with the grieving.  We shall see, I suppose, although everyone tells me (the doctors, my support group, etc.) that the more grieving I do on "this side" the less grieving I will do on "the other."  Have I mentioned that before?  I just experienced a de ja vu moment, so I apologize if so.

2013 is going to be a great year and I am truly looking forward to living life to its fullest to the best of not only my ability, but our ability together.  Making memories.

q'ua

True wisdom comes to each of us when we realize how little we understand about life, ourselves, and the world around us. Socrates

Tonight I am exhausted and tomorrow is another long day at work.  Something Sam said tonight, though, really got to me and decided to share it rather than dwell on it by myself.  So you all get to think about it with me.  You lucky people!  Anyway, he told me he is looking at wheelchairs.  He did not say why or how soon or what if or anything else, it just came up in conversation, oddly enough, when a commercial came on featuring Segways.  Apparently Segway is making wheelchairs now, according to him.  Interesting.

There are many things in life that will catch your eye. But only a few will catch your heart....Ben Crenshaw

Another two weeks past in a flurry and here I am thinking I better write something or people are going to begin to wonder!  Anchorage is back into its deep freeze, although we did manage to get about a foot of snow last week, all of which is still on the ground and we are now in a wonderland of white.  It is beautiful but ohmigosh, it is cold.  Best thing is, the winter solstice is in a few days which means...a few more months and it is fishing season again!

Fishing for silvers on the Deshka.

Today my dad is celebrating two weeks of feeling his feet.  Now that may sound a bit crazy but he injured his back when he was 10 and the injury became worse over the years, especially playing football, baling hay, chasing kids, falling off the Thrift Shop roof in John Day, and a variety of other things.  He finally found a neurosurgeon in Corvallis who wanted to do something about it.  Dr. Cliff Roberson, an Iditarod veteran, knew he could help Dad, and he did just that.  We are all so grateful to him being willing to take a huge risk, as Dad also has severe heart problems, and work on Dad's back.  The hope is that it will alleviate much of Dad's pain as well as other medical issues.  The greatest result, though, is that Dad is able to feel his feet again.  How awesome is that!  Mom and Dad celebrate 53 years on Wednesday, so this year is extra special.

Sam's doing ok.  Last week marked three years since the diagnosis of his stage IV non-small cell lung cancer.  Wow.  We are grateful for each and every day.  His energy lasts only about 30 minutes a day now and then he is done.  Not until late last week did I realize how much his lack of energy and tremendous amount of fatigue bothers me.  A couple nights I found myself in tears that Sam is unable to do the things he loves to do. Our weekend jaunts are no longer since he cannot sit in the truck for more than 1/2 hour.  Last Saturday my company had its holiday party. In past years, the two of us often left last...then last year, we left when the band started, and this year, Sam did not even go which proved to be difficult for both of us. Through no fault of his own, my husband in many ways is not my husband anymore.  Funny thing is, I think he is on the same wave length.  During the week we do not sleep together because he is in such intense pain throughout the night and wakes several times, sometimes for hours at a time.  So, to make it easier and less stressful for both of us, we limit sleeping together to weekends...and that is only if he feels okay enough to handle another person moving around. Tonight, he suggested we look at purchasing some new furniture so we can be close for an hour or so in the evenings during the week and perhaps then the two of us will feel better about our lives.  Sometimes his thoughtfulness truly takes me by surprise.  Another new chapter, though, no matter which way you look at it. If we cannot sleep together, we can at least spend some time together on the same piece of furniture rather than across the room from each other.  Just in case you are wondering...our couch is not in the least bit comfortable for Sam.  

Sam is still talking about Hawaii next month, so I guess I better start doing something about that.  Luckily, last spring in the Clean Air Challenge bike ride, I won two roundtrip tickets anywhere Alaska Airlines goes.  And by the way, fundraising for that starts in January!

q'ua