Showing posts with label caregiving. Show all posts
Showing posts with label caregiving. Show all posts

Tuesday, February 5, 2013

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

Sunday, November 18, 2012

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

Sunday, November 4, 2012

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


Thursday, October 18, 2012

“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

Monday, October 15, 2012

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

Monday, October 8, 2012

"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.   Cry


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

Wednesday, April 4, 2012

To save man from the morass of propaganda, in my opinion, is one of the chief aims of education. Education must enable one to sift and weigh evidence, to discern the true from the false, the real from the unreal, and the facts from the fiction. Martin Luther King, Jr., The Purpose of Education

Civil Rights Memorial, Montgomery, Alabama
Forty-four years ago today, Martin Luther King, Jr., was assassinated, April 4, 1968.  I was seven years old, in 2nd grade and we were living in Pineview, Georgia.  Dad was assigned to three small country Methodist churches and during the week, he commuted to Atlanta to attend seminary at Emory University.  Mom stayed home with the four of us while Dad was gone 3 days/2 nights every week.  My parents, to this day, when talking about Pineview, say that is the first place where they truly practiced missionary work.  Just let your imagination run wild and you might be able to come close to what my family experienced as Yankees living in the deep south, and not just Yankees, but a Yankee minister's family to boot.  Rev. King's life and death symbolize to my family the ideology my parents struggled to teach others and managed to deeply instill in my siblings and me, the ideology which to this day continues to resonate strongly with my family.  It is because of this that yesterday's election quagmire here in Anchorage has been so difficult for me to acknowledge let alone accept.  If you do not live in Anchorage, here is a link to explain (as best one can anyway) yesterday's election scenario:  http://www.adn.com/2012/04/04/2407382/municipality-aclu-investigate.html.  How it is possible to run out of ballots in so many different places is simply unbelievable. That Anchorage might still be a community which allows discrimination is extremely disappointing. This all goes against my soul and I will never stop fighting for the right to vote and equality for everyone.  Interesting thing is, those are things Martin Luther King, Jr., was also fighting for 44 years ago.  Maybe that is how many years this beautiful city and state is truly behind the rest of the United States.  I do not know.  However, I will now stop discussing the election for tonight, but believe me when I tell you, it will not be far from my mind for a long time to come.

Sam is doing quite well today, he enjoyed a couple hours at the shelter and then came home to work more on his Japanese lessons.  He is getting closer to being ready to converse with others and was very pleased with himself as he received an 81% on completing the first of three sections today.  Good for him!  Tomorrow he will probably rest most of the day.  Going to the shelter two days in a row is generally too much for him anymore.  Last night he told me he might start working with the cats instead of the dogs.  That made me really sad for Sam, yet very happy for the cats.  My only thought was...well there is one way to drive Sweet Pea nuts.  All those other cat smells on his clothes?  She will go bananas.  Might be kind of entertaining, actually.

Ciao!