“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

Nothing like paying the price for forgetfulness. me.

For someone who preaches to live each day to the fullest, I somehow managed to lose that focus and it is affecting my relationship with Sam to degrees I never imagined.  Tonight I received a sharp wake-up call and I aim to get back to that mantra quickly. It is like I got into a kind of lull regarding his illness instead of staying aware of the fact he could be gone in 5 minutes.  Sadly enough, it took a huge argument tonight for me to fully understand what is happening.  Spending my time being depressed is not a wise thing, either, but I do need to get back to live each day like it is your last mindset in order to keep things like tonight from happening again - very depressing, in case you are wondering.

I have no idea why I felt the need to put this out there, but that is what I am doing.  It is so interesting that Sam has yet to read my blog, his only concern is that I am honest and not misleading about his cancer, that I am not making incorrect statements about what is going on with him.  I do not believe I am, or have, but it is all in the eye of the beholder.

Terminal illness does such awful things to individuals and affects anyone and everyone around them in ways unimaginable.  When I attempt to put myself in Sam's shoes, it is difficult.  

More than anything, I want him to be comfortable, at peace, and enjoying a good quality of life.  Right now, I am not doing a very good job of making that happen and it is because I lost my focus.

So very grateful this day is over, and yet, so grateful Sam was finally able to get through to me the issue. 

He apparently slept a lot more than usual today, still does not feel good, and tomorrow is chemo.  I thought the sleeping was a good thing and he tells me the amount he slept is not a good thing which worries me.  Tomorrow is a new day.  Thank goodness.

Ciao.

Fishing tournaments seem a little like playing tennis with living balls... ~Jim Harrison, Just Before Dark, 1991

Helen (daughter #2) arrived Wednesday evening and we promptly took off for Homer as my work took me to Ninilchik, Anchor Point, and Homer Thursday and Friday.  Helen's goal...to catch a fish as she is her father's daughter.  The challenge is that fishing in Alaska is not what it has been in prior year's, so the pressure was on.  Sadly, though, she is headed home tomorrow without catching a fish, but as she says, memories were created and that is what is most important.  Check out the video of Sam giving Helen fishing lessons at Bird Creek today, the last stop before we got home in hopes of maybe catching a fish.  Sam did hook a couple, lost one and the other was snagged which he had to let to go (Alaska State Law).

So proud!

Seward's Silver Salmon Derby started yesterday and we did not know that until our arrival late Friday night to spend the weekend.  As soon as we figured that out, we all bought our derby tickets for Saturday in hopes of catching the big one.  We fished in several different places, but the best was Lowell Beach.  We were there in the middle of the day just lazing around, no one really catching anything.  In fact, I sat down for a bit and then decide to give it one more try...and bam!  I had one on and hauled it in before Sam even realized what was going on.  Once I caught mine, all the men on the beach rushed out to start fishing because you know...there is nothing worse than being outfished by a girl.  Of course, I insisted on registering my silver salmon (Coho) with the Derby judges and for a quick 30 seconds, I was in 2nd place with an official catch of 7.91 pounds, 1st place at that point was 7.95.  Darn it!  Then, Mr. 10.72 pounds showed up and that moved me into 3rd place quite rapidly. Those two were caught by people on boats, so I was, and still am, quite proud I caught mine on the beach.  Helen is certain I am going to win the prize for the biggest one off the beach.  That would be awesome (and would shut a certain person who lives with me up...just sayin'....)  By the end of the Derby, there will be many silver salmon well over 10 pounds but my few seconds of glory were very exciting.  And no, in case you are wondering, Sam nor Helen caught anything in Seward.

Clouds over Resurrection Bay.

Helen has not seen her dad in over a year and I am so glad she finally decided to come for a visit. It is difficult to convey to the kids how Sam is doing, even though they have already been through this process with their mother.  They need to see him, though, and he needs to see them. All three kids are in college, though, so it is a challenge for them to get to Alaska from Virginia and still have a few days to spend here with us.  Nikki is coming out over Labor Day weekend and we have yet to figure out plans for Alex.

Sam seems to be doing pretty good although yesterday was a challenging day. Friday was the one week mark from his chemo treatment and each treatment so far either brings different side effects or different timing of the side effects.  We made it through, though, and that is a good thing.  On my part, I need to constantly remind myself of the chemo because I tend to forget and then sit there wondering what in the world has brought on this crazy behavior.  Once I am aware of what is happening, I am better able to get a grip on my attitude and not feel the need to rise up and fight back thinking I need to defend myself.  Rather, I am able to calmly listen to what Sam is saying and move on.  Unfortunately, yesterday it took a couple hours of arguing for me to realize what was happening and back off.  Even then, it still took the entire day for me to gain some control over the situation and also reassure Sam that I indeed was listening to what he was saying.  Today, I am exhausted.

Yesterday he did tell me that he thinks we should visit some assisted living facilities here in Anchorage to get an idea of what is out there if we decide to go that route. Hearing Sam talk about that was extremely difficult for me as I want him here at home but it might not be the best option when the time comes.  Obviously that remains to be seen.

And no, we still do not (or at least I do not) know the actual results of the CT scan.  Still waiting for Sam to pick up the report at the hospital.

As for me, usually by Friday I am completely exhausted. Work is extremely busy and Sam demands my attention in the evenings when I get home.  Sunday evenings, because we live for the weekends, are spent rushing around doing laundry and attempting to clean house.  When Brian was here I told him cleaning is not a priority because I just have too many other things which are priorities.  Sam piped up with a "her Mom told me when we got married that she is not very domestic..."  Thanks Mom, although as I tried to explain to both Sam and Brian, I do not really think my mother was saying I do not clean, I think she was trying to convey to Sam work and play are much more important to me than staying home and cleaning house. One of these days I hope to hire a house cleaner, or rather, condo cleaner, and then I just will not have to worry about it again.

Ok, I am rambling.

Ciao!

Come gather 'round people wherever you roam, and admit that the waters around you have grown. And accept it that soon you'll be drenched to the bone. If your time to you is worth savin', then you better start swimmin' or you'll sink like a stone. For the times they are a-changin'. Bob Dylan

The times are definitely changing for us. Each day I as I look at Sam I see slight changes in his face, his body, his thought process, his fatigue, yet there is one thing which is constant, and that is his intense desire to not let the cancer rule his life.  What a challenge that is and he manages to meet it head on each and every day.  He is truly an amazing man.

Mt. Iliamna

We did get some fishing in over the weekend and managed to come home with some fish! Yeah for us!  Geez.  One more weekend of no fish and I would have become a complete madwoman. (No comments necessary, Roy Goldman!)  Anyway, the weather and scenery were absolutely beautiful and we could not have asked for a better time. Thank you to the friends who made it possible for us.  And before any of you ask, no, we have not yet transitioned to a trailer/camper/motorhome but we are definitely discussing it.  In fact, when I came home tonight and said there was something I needed to tell him, that is what he thought I was going to say, that I had gone out and bought something. HA. Maybe I will.

Sam met with his doctor from the VA on Monday.  She is concerned about the swollen glands behind his ear and the pain he has intermittently been experiencing elsewhere in his head and neck area.  She ordered an MRI but we are waiting on the results of his blood tests first to see if his kidneys have recovered enough from the last CT scans and chemo treatment to endure the MRI.  The past couple months Sam has voiced concern about pains in his head but I think we both have been fearful to push it. Therefore, it truly was no surprise to us when she said she ordered the test. Hopefully, we will hear in the next few days when that will be.

The 48 hour mark last Friday after his chemo treatment went quite smoothly for me, if you know what I mean.  He did experience side effects, though, and still is - nausea mostly.  Not too bad, but enough for him to continue taking the anti-nausea medication provided him by the doctor's office. He also is sleeping more than before (I did not think that was possible!) and is slowly losing weight. We are working hard to keep calories in him and maintain his weight. If he loses too much, the chemo will stop. There are some other side effects we have to watch for, specifically at the 21-28 day mark from the carboplatin part of the chemo which relates to blood cell and platelet counts and is referred to as "myelosuppression."  There are drugs to combat this but hopefully, Sam will not have to worry about it and can focus on his next treatment which is scheduled for July 13.

As for me, work is really busy. Summer brings on additional responsibilities including fire management. So far, two fires, both human caused. Luckily, they were both caught early and extinguished quickly since they were near urban areas. What I had to tell Sam tonight is about a day trip I am making next week to the other side of the Cook Inlet...and that he cannot go with me.  Yes, it is work-related, but I still feel very guilty because I know he would truly love to go.

Ciao!

You cannot see wilderness from a road. What you see from a road is something different- a scene, a panorama, a picture; but you do not feel anything. Edward Abbey

Hiking is one of our favorite things to do.  The reason we moved to Alaska was to enjoy its beauty to the utmost, and when we first moved here, we hiked every weekend, regardless of the weather.  Now, it is limited to once a month, mostly depending on how Sam is feeling.  He puts forth an incredible effort, though, no matter what, even though like today, a couple miles is about all Sam can handle.  Today we walked the "Bird to Gird" bike path from the Girdwood side.  It is amazing how many landslides are still blocking the trail. Hopefully they will be cleared in the next week or so as tourist season officially starts Tuesday.

Resting along the Bird to Gird trail.

This past week Sam ventured out a couple times on the bus, managing to walk a mile or so in various parts of Anchorage.  He really enjoys doing that and at the same time, people watching, always coming home with stories of some sort or another.  He even got recognized by a friend who we rarely see and that gave Sam a good laugh.

Wednesday Sam met with his oncologist, Max Rabinowitz, and did tell him about the issues with his legs and the nausea.  CT scans of his abdomen, pelvis, hips and lower back are scheduled in two weeks as well as an MRI.  Rather than try to guess at what is causing the pain and the cold feeling in his legs and feet, Sam and the doctor agreed to do the tests.  In the meantime, Sam sits with a heating pad under his legs to stay warm. From the beginning the doctors told us that there is a good chance at some point in time that the cancer in his back would cause paralysis.  He fought it successfully last summer and fall with radiation but his body cannot handle anymore, so if that is what the issue is this time, I just do not know what will be done, if anything.  It might be that we start preparing ourselves for the next phase.  No matter what, we will make the most of it. Sam and I have talked at length about when, not if, he will need to be in a wheelchair so that we will be somewhat prepared when it happens.  I do not think anyone can be fully prepared for that sort of life changing event, regardless of what a person says.

Saturday Sam wanted to rest, so I took the opportunity and got in a 40 mile bike ride since the Clean Air Bike Challenge is in two weeks.  The ride was spectacular except for that darn headwind on the way back and the two semis who came blasting by me blowing sand everywhere.  There is a bike path which runs from Wasilla to north of Willow, so thankfully I was on that, but sand and gravel were everywhere and some parts are quite close to the road.  Of course, that was were the semis went by me, too.  Oh well, gave me a taste of what the ride is going to be like!

Ciao!

"I am only one, but still I am one. I cannot do everything, but still I can do something. And because I cannot do everything I will not refuse to do the something that I can do.” – Helen Keller

Today was supposed to be a fairly routine day for Sam - blood tests prior to the Xgeva injection tomorrow, support group, and then maybe even oncology rehab.  Needless to say...it didn't go that way.  He arrived at Providence to get the blood tests and discovered that the prescription for the tests were expired.  Of course, I did not see his text telling me all this and asking for the truck because I am thoroughly enjoying my lunch out with a girlfriend and we've got tons of catching up to do.  Checking my phone is the last thing on my mind. Luckily, he has learned patience, plus the support group was getting started, so he had something to do until I could get there to give him the truck.  He could have taken the bus but in order to get to his doctor's office and back to Providence, the bus truly was not an option.  That all would not have been so bad if we were not still trying to get all the insurance straightened out since he had gone on my insurance at the beginning of the year and also FINALLY signed up with the VA. My company is self-insured so that requires additional pre-authorizations which he has not had to obtain before. Luckily the doctor's office was aware of it due to my lengthy phone calls with the office a month or so ago, trying to get it all straightened out.  After he did all that running around and got the blood tests completed, he then had to get the truck back to me for my very important appointment at 5:00.  He was pretty darn tired, to say the least; however, he was still in a good mood by the time I got home.  How great is that!  Today was a good example of how he spent his days when he was first diagnosed with lung cancer.  We are both very grateful this doesn't happen very often anymore.  Sam wouldn't be able to do it on a continuing basis and I don't have time for it.  We'd be in a jam!

For those of you thinking, "I thought he wasn't supposed to be driving anymore," he is now ok to drive very short distances since he is no longer in chemo or radiation.  Even being able to drive the short distances has given him back a sense of independence and has made a tremendous impact on his spirits.

Chopping wood at Nancy Lake Public Use Cabin #2

Sam has been feeling kind of cruddy the past few days and this morning he did tell me he thinks his glands are swollen because his neck is sore.  When he tells me things like this, I try not to react too much because that drives him crazy.  So, instead, I worry silently, wondering if once again, it is the lymph nodes which are causing the pain, or if it is just a cold or sinus infection he is trying to fend off.  No matter what it is, his body's immune system is definitely not what it used to be which means I need to pay close attention to what it is he is telling me and how he is telling me.  Luckily, he also has an appointment with Dr. Rabinowitz on Friday.

Those Korean shows have finally gotten to Sam.  HA.  He just told me that he probably won't be watching them again for awhile because the series he has been watching became "just too intense."  Wonder what he will find to watch on Netflix now...

It was a beautiful spring day in Anchorage, bright blue skies, warm and the snow is rapidly (relatively speaking) melting.  All day I was wondering...is this it?  Or, is there another big one coming?  I want us to break the record, yet at the same time, I want the snow to be gone gone gone!  Plus, the snow is so very dirty during breakup.  Speaking of breakup, I need to remind Sam to buy our Nenana Ice Classic tickets. Gambling is not allowed in Alaska, so we make do with contests like betting when the tripod is going to break through the ice at Nenana.  It is pretty darn exciting!  http://www.nenanaakiceclassic.com/  Check it out.

Tomorrow is a new day and, I am sure, full of new opportunities.  Sam has his Xgeva injection in the morning, then will probably go to the shelter.  As for me, a couple meetings in the morning and then volunteering with other CIRI employees at the Elders Food Bank in the afternoon.

Ciao!

Failures are made only by those who fail to dare, not by those who dare to fail. Lester B. Pearson

As most of you are aware, Sam has taken some time off from his blogging.  He claims to have gotten bored with it, which, after almost 3 years, does seem rather likely.  Perhaps my blogging will motivate him to start again!

The past 3 months have been almost a blur.  Sam's doing quite well for someone with stage IV lung cancer.  He is not as active as he was, and I don't know if that is a result of the insane amount of snow and cold we've had this winter or because his body is just slowing down.  His positive spirit does remain and for that, I am quite grateful.  My most challenging moments are when he is angry and I need to quickly determine if it's actually me he is angry with or the situation at hand. Or both for that matter.  I am often unsuccessful at figuring it out, just so you know.

Right now, to keep his mind busy, he is studying Japanese.  Yes, you read that right.  Japanese.  He sounds great when I hear him practicing, but then...I know nothing about Japanese, he could just be speaking gobbledygook for all I know.  I admire him for attempting it because I can't say I would do the same.

The animal shelter enjoys his presence a couple times a week.  He's even learned how to groom the dogs, handling the dogs under 40 pounds.  The cancer in his lower back and pelvic area do not allow him to work with the larger dogs anymore.

As for me, life is good.  Just wish the snow would go away.  I am training for the 2012 Alaska Clean Air Bike Challenge, an annual fundraiser for the American Lung Association.  It's a 60 mile bike ride from Houston to Talkeetna on May 12-13.  120 miles round trip.  Here's my webpage for it if you'd like to donate, or perhaps join the team?  http://action.lung.org/goto/daraglass  I'm at about 70% of my fundraising goal, which I am absolutely amazed about!

Chat at ya later!