As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them.--John F. Kennedy

Attitude of gratitude.  Just simply being reminded to be grateful brings a smile to my face and a peaceful feeling to my soul.  There are so many things for which I am grateful and I know, without them, I would not be where I am today.  Most of all, I am eternally grateful for my friends and family who are too numerous to mention. Know though, that although I might only see or talk with you once in a great while, each and every one of you have made an impact on my life and for that, I am grateful.

Winner Creek Trail marker at Alyeska

Sam is doing quite well at this point, relatively speaking.  Last weekend we spent at Alyeska, a resort approxmiately 40 miles south of Anchorage.  It is one of our favorite "getaway" spots and it did provide some rest and "cancer free" moments, such as eating at our favorite spot, The Silvertip Grill.  On the other hand, it served as an eye opener for me.  During our past visits, we went on many hikes along the Winner Trail as well as along the multi-user path which goes from the resort to the Seward Highway.  This time, however, we made it about 1/4 mile in on the Winner Creek Trail and Sam hit his max.  I suspected his breathing capabilities were not what they had been, but he refused to really let me know...until I saw it for myself. Going up stairs is a challenge, and it is a very slow process.  Watching him struggle with activities he dearly loves broke my heart; yet because I cannot allow myself to become immersed in the sadness of it all, I literally pushed those thoughts out of my mind. They are there, though, just under the surface.  Here is my energetic, outdoor-loving, athletic husband struggling to do something he used to give me grief for in not being able to keep up with him.  Now, it is the exact opposite (although I do not give him grief, let me be very clear on that.) Today he told me he tries to walk 20 minutes each day in order to keep his circulation going and his muscles from atrophying.

Sam hiking at Alyeska

As for his mood, it is much better and he informed me that the doctor prescribed a low dose of Lexapro for his mood and anxiety issues.  Now I know why things are so much better.  Whatever it takes,  although a win yesterday by his Ducks would have made the world a much better place as well!
However, my Denver Broncos are doing awesome, so all is well in my world!

This past week I spent at two different conferences, the first at the Alaska Chapter of the American Planning Association and the second at the Resource Development Council.  Let me just say...there is a huge difference between the APA's mindset and the RDC's mindset.  For those of you who live in Alaska, I am sure you know what I mean.  I will leave it at that and say no more.

The weather here in Anchorage is getting cold and colder, not much snow, but enough to let us know winter is here.  My sled dog musher friends are grateful for the cold because it provides a more stable environment for practice runs. Alyeska opens for skiing this week, so that will make many others happy, too.  "They" say that we are supposed to have just as much snow this winter as last, however, so far, it does not look like it.  On the other hand, March and April are the snowiest months, so I probably should not get too excited.

In case I do not post before Thursday, to those of you in America, I wish you a very Happy Thanksgiving!

q'ua

We become what we think about all day long. – Ralph Waldo Emerson

Ralph Waldo Emerson is so right, we do become what we think about all day.  Therefore, I will be thinking of myself as being 5'6" tall and 20 pounds lighter.  That should take care of that.  :)

In two days we will finally know who our president will be for the next four years.  No matter who wins, it is our responsibility and duty as citizens of the United States to do just that, unite behind our president and support him (or her!) and not whine, complain, or degrade our leader.  Vote and be proud of your vote, and if your candidate does not win, support the winner no matter what.  This negative talk must stop or our country will suffer even greater loss.  Remember what Mr. Emerson said..."We become what we think about all day."  Be positive and supportive, we can and must do it if we want to continue to be a global leader.

Sam's ultrasound results came back with nothing abnormal found. We have yet to really discuss it, but for myself, I cannot decide if I am glad or what.  In a way it is good to know there is nothing, yet on the other hand, what are we missing?  It is quite possible the pain is a side effect from the chemo and will slowly disappear over time but, again, it is quite possible the pain is something which needs to be addressed.  A person could go crazy worrying about the what ifs.

Sweet Pea on her lazy Sunday afternoon nap.

With each passing day, Sam's mood does get better.  He is still sleeping a lot and not getting out and about like I think he should be, but I am not the medical expert nor did he ask my opinion (whatever is up with that?)  Last week while on a call with the kids, he described his cancer as having four different parts which I find interesting.  The four parts are:  1) the cancer itself; 2) the side effects; 3) the symptoms; and 4) the mental/emotional issues. Although they are all tied together, separately they seem easier to deal with and to think about.  Just food for thought. During that call I also learned he is taking 3 months off from treatment, will have a CT scan in December or January on his chest/abdomen, and from there will decide what, if anything, will be next.  Apparently there is a clinical trial which he might qualify for which is for those patients who developed a resistance to Tarceva, which includes Sam.  From what I understand, the doctor is trying to get Sam qualified in case he decides he is interested in participating.

As for me, I am feeling much better although the tears seem to flow much easier these days.  I suppose my mind is finally getting wrapped around the state of affairs; or, my thoughts are becoming compartmentalized and I am dealing with life as I normally do.  That statement seems a bit redundant and I am now rambling.  Exercise truly makes a difference and after attending this morning's American Lung Association's breakfast, I now will be training for the Clean Air Challenge bike ride in the spring.  The Ducks, Beavers, Longhorns and Denver Broncos all won this weekend, too, which made it even better! Work is going gang-busters and I still love my job which is awesome and I am very grateful for it.

This week saw much destruction on the east coast and many of our friends and family were, and still are, without power and some are without homes.  Mother Nature has a way of reminding us we are not in control, so if you are not prepared for emergencies, I would recommend you take 30 minutes in the next few days and get yourself prepared.  You just never know when and where that emergency gear will come in handy.

For those of you wondering, the earthquakes in the Queen Charlotte Islands off of British Columbia were not felt in Anchorage.  They are too far away, 893 miles or 1437 kilometers to be exact.  Nor did we experience the tsunami.  Weather wise this week turned out to be a bit boring compared to previous weeks here.

q'ua

“I'm selfish, impatient and a little insecure. I make mistakes, I am out of control and at times hard to handle. But if you can't handle me at my worst, then you sure as hell don't deserve me at my best.” ― Marilyn Monroe

Yeah, what she said!

Sam is slowly becoming his old self again, although I know he will never, ever truly get all the way back.  Each day he tells me a little bit more of what is happening with his body.  The other day in my blog, I stated he did not have another doctor's appointment until next month.  Silly me.  What I found out yesterday is that he actually did have another doctor's appointment, only it was with his doctor at the VA who he sees on a quarterly basis.  She is an internist and asked Sam during his appointment if he is aware his liver is enlarged. Uhhh...hmmmmm...yeah...good question.  She immediately scheduled an ultrasound for tomorrow morning, meaning Saturday. Is it a good sign when a doctor schedules a test on a Saturday and tells you the door will be locked at the VA clinic so we will have to ring the bell and wait to be let in because the clinic is not normally open on Saturdays? Just curious.

Thinking about all the tests the past 3 years conjured up memories of how the first PET scan went and how much trouble we had with it.  The radiologist who read it actually read the wrong test and then when he did pull up the correct one, misdiagnosed Sam and insisted, even while doing a needle biopsy in his lung that it was just scar tissue and he was going to prove it. Oh yes...remembering all that conjured up some rather testy moments in my memory bank and times of actually yelling (how unusual of me) at the person on the other end of the phone, ranting on for several minutes.  Then, in January and February of 2010, spending each and every day either on the phone or at the hospital, clinic or various doctors' offices trying to get the diagnosis straight on all of Sam's records.  What a nightmare...or perhaps I should rephrase that...I was the nightmare.  I am certain when some people saw me coming, they wished they could just close the door and lock it so they would not have to deal with some crazy woman who was half out of her mind because her husband had been misdiagnosed and then found to have stage IV cancer which was, and is, incurable.

Ok...I ranted. Onward.

Today marks week 2 post-chemo and he is that odd looking sallow color which almost makes him look like he is embalmed (no kidding, Roy, you should see him!)  Thankfully he smiled often tonight and he kissed me goodnight, first time in 3 months.  Happy Dance!  It is the little things in life which make a person happy, as I am sure you understand.

Walking is proving to be more and more difficult for him. As we drove to the VA yesterday, he told me he probably only has 75% use of his left leg (the one he lost complete use of in the summer of 2011 and had radiation on) and that his right leg, foot and ankle are having problems, with maybe about 85% use, if not less.  Watching him struggle to walk is almost painful at times and we both believe it relates to the tumors in his lower back pressing up against the nerves.  Since he cannot have anymore radiation, I wonder if it will be sooner rather than later when he is no longer able to walk.

His spirits are good and for that, I am grateful.

q'ua

“The deeper that sorrow carves into your being the more joy you can contain. Is not the cup that holds your wine the very cup that was burned in the potter’s oven?” – Kahlil Gibran

Well, I am keeping this short tonight because 1) I am exhausted; and 2) the Ducks are playing.  

That being said, the results are better than anticipated, but like Sam keeps repeating, they really do not change anything.  The liver is fine, the progression in the lungs is slower; however, there are a few new "hot spots" with one in the T10 vertebrae and 2 new spots in his pelvis.  The doctor told him the crazy things Sam is experiencing are side effects from the chemo and typical symptoms of lung cancer (no one has ever really told him that before that I am aware of.)  

When I asked if he felt some relief, he replied with a "not really" and then went on to explain, as I noted above, it does not really change anything.  No, it certainly does not, but it does give hope to live a bit longer.  This down mood really needs to disappear.  

Last May before the chemo began, we decided to try to go to Hawaii in January.  Those plans went by the wayside during the chemo but tonight he said he would like to try and go.  So, it is back on the calendar but we will not make any plans until after the first of the year.

Sam sees the doctor again in a few weeks, then is not scheduled to go back for another month  or so after that for a CT scan on his lungs and abdomen.  

There you have it.  All is "good" for now, but as you all know, in the cancer world, things can change on a dime.

q'ua

The roller coaster ride continues. Me

Just a quick note. As I drove Sam to Providence fot his PET scan, he told me the real reason the doctor ordered the test is because Sam is feeling a deep sharp pain above and to the left of his belly button. For those of you who do not remember your anatomy and physiology classes, that is the liver.   I remained calm until after I dropped him off and drove to a park overlooking the Cook Inlet. Just so you know, I am not very calm right now.

Test results are supposed to be given to us tomorrow.

Pray for peace, please.

q'ua

A woman has got to love a bad man once or twice in her life, to be thankful for a good one. - Marjorie Kinnan

Before I get started, let me just say...BRONCOS! 

Last night I had an epiphany of sorts.  Sam hardly said a word to me all day and had his headphones on listening to music while watching football.  At first I misunderstood the situation thinking that he was attempting to completely ignore me.  However, after watching him for awhile, it suddenly dawned on me he was practicing pain management skills taught to him through the palliative care program at Providence.  I asked him how he was doing and for the first time, he told me he was in a great deal of pain.  The immediate change in my attitude was amazing.  It was a complete turnaround from being sad, disgusted, angry, scared and all those negative emotions, to being empathetic, concerned, caring - emotions and feelings I seemed to have lost the past couple months reappeared.  I do not want Sam to be in pain.  Having him tell me straight up that he is in a great deal of pain tells me he is in more pain than you and I can ever imagine because he has an incredible pain threshold.  As to exactly where this pain is, he did not tell me; however, it is probably throughout his entire body which leads me to my thoughts today.

Helen getting fishing tips
from her dad at Bird Creek.

During the course of the cancer journey, you are constantly fed a vast array of information which you slowly digest, allowing it to sink in and then it does not seem to reappear until the necessary time when it is needed most.  During our visit to the Seattle Cancer Care Alliance, the doctors walked us through a timeline of sorts, listing events which might happen at various times.  One of many things discussed is when there is no more treatment available and/or the pain level is just too much to maintain a good, or even decent, quality of life.  Sam and I have had this discussion several times, but it has been awhile so it is not in the forefront of my mind.  Until today, that is, when I suddenly recalled what the doctors told us.  Often, depending on the patient's request, hospice is called.  Not because the end is near, but because hospice provides a much higher level of pain management which cannot be offered through palliative care or the doctor's office.  Today, I began preparing myself for that possibility.  Please understand that I am preparing for the worse and hoping for the best when I say this.  

Sam's PET scan is Wednesday and we are scheduled to receive the results on Thursday.  Sam will then be faced with making a decision based on the results, the doctor's recommendations, and hopefully a discussion with me.  No matter my opinion, though, it is entirely up to him as to where we go from here.  Throughout the past 3 years, Sam has maintained he does not want to live in pain. Initially we discussed in-depth the options, including moving back to Oregon or Washington where assisted suicide is legal, researching the pros and cons of medical marijuana (which is not available to purchase in Alaska, you have to grow your own and needless to say, that is where I put my foot down at the time), morphine in some form, or whatever is available.  The bottom line is he does not want to live in a world of pain.  Today at work, I shared my tears and my fears with some of my co-workers and because I do not want to cry again right now, I am not going to write any more on this subject tonight.  There will be plenty of time later to share whatever route he chooses to take.

Tonight he does seem to be in a much better mood, thank goodness.  I prayed long and hard over the weekend for the anger to subside and I am hoping it has.  It will take some time for the chemo to work its way through his body and I just need to remember to be patient.

So many of you have called, written, emailed, texted, whathaveyou, and I greatly appreciate every bit of it.  It certainly has made it a little easier to handle and I am slowly starting to accept my marriage will never be the same again, no matter what.  But that does not mean I do not love Sam any less.  In fact, I probably love him more because that is about the only thing I can do.

q'ua

"And how many words have I got to say? And how many times will it be this way? With your arms around the future, and your back up against the past. You're already falling, it's calling you on to face the music - and the song that is coming through. You're already falling, the one that it's calling is you." Moody Blues, The Voice

Tonight, I just want my Sammy back. Rocky threw up all over the place, so I shampooed the carpet in various spots.  Sam sat in his recliner and both cats burrowed in on top of him, scared out of their minds. It was absolutely adorable and I wanted a picture.  I stopped shampooing, grabbed my iPhone and started to take a picture.  Sam got pissed off, said no pictures, threw the cats off his lap, got up and stormed into the bedroom.  I could not believe it.  He then told me that I had blown it by not turning off a light which I knew shined into his face and then insisted on trying to take a picture when he had told me not to.  At this point, I could not tell you if I did or did not.  I am a complete mess.  He went to bed about an hour ago and I have tried to relax and stop crying, and all I do is cry harder.  I am so sad on so many different levels.  I know he is not in his right mind and that is the most difficult part.  I also know he realizes his behavior is crazy but he cannot stop himself in the midst of the anger and he is too proud to come back and apologize.  Besides, by the time he sees me again after these episodes, he has long forgotten them and we have moved on.  It is so incredibly painful.  

Tomorrow I am going to call his doctor and beg him to not ever put Sam on carboplatin again and to also make sure when they do the PET scan next week, a brain scan is included.  He told me earlier today he hurts all over.  How can a person live like that?  His quality of life right now just sucks.  This is not our lifestyle, we are a glass half full family and we are not living like that at all.   


I wish I could snap my fingers and everything will be alright. This is pure unadulterated hell and I would not wish this on anyone.

These are the times I find myself freaking out wondering if Sam is ever going to get back to himself or if this is what we are going to live with for however long.  I do not want this to be my last memories of him.  He accuses me of only worrying about myself, so I suppose I am by saying this.  It is quite selfish.  On the other hand, I do not want him to have to live like this, either.  It is awful.  Absolutely awful. 

We know so many of you are keeping us in your thoughts and prayers and we both greatly appreciate that.  We ask you pray for Sam to be able to maintain a good quality of life in peace and in comfort.

q'ua