Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming. What do we do? We swim, swim. Dory in "Finding Nemo"

Over the weekend, Sam and I came to terms with a few things in this current chapter of our lives.  

1.  No more traveling (which is the most difficult.)

2.  Sam is extremely limited in things he can do for himself.

3.  No matter how excited we are about the new cancer drug, it is going to do nothing for the pain caused from the bone metastases.

4.  The pain from the bone mets is excruciating (my word for the day.)

5.  The bone pain (hips/pelvis/femur) is much higher priority than the pulmonary embolism, the deep vein thrombosis and the pulmonary tumors combined.

What to do?  The pain is wreaking havoc on Sam's quality of life and maintaining a good quality of life is extremely important to us.  

Thursday is the day for the VA home assessment.  There are temporary measures in place until this is done in order for us to continue living day to day best as we can.

Yesterday during our chat we both stated we feel this is not fair but it is what it is so we will make the best of it, no matter where it takes us.  

Unless Sam's health takes a major upward swing, which is entirely possible, we are both preparing for the distinct possibility of hospice sometime soon.  After last night's discussion, I think Sam might be waiting for me to make that final decision.  We are both slowly wrapping our minds around it. Just keep in mind, the whole point of hospice is pain management.  Sam is already taking pain meds of the most intense at the highest dosage without becoming completely loopy.  Any increase and there is a good possibility we will not have many conversations such as we did last night. That being said, hospice can last a long time.

I hope to write every few days now as my energy level is dwindling and I need to focus it on Sam, myself and work.  

I do have a favor to ask as well.  Several years ago, Sam's storage unit was broken into and he lost almost all his sports memoriabilia.  If you happen to have any photos (sports, school, whathaveyou) of Sam from throughout the years, would you please share them with us?  You can email them to me at joieevans@alumni.utexas.net and it will be greatly appreciated.

It is coming to the end of summer.  The only good thing about that is FOOTBALL!  My Denver Broncos are having a terrific summer camp (if everyone can stay out of jail, good grief!) and are looking forward to another awesome season.  I can hardly wait!

q'ua

Today we visited Dr. Chung, the radiation oncologist. At this point, there really is nothing he can do for Sam, although he did tell us about another new drug recently approved by the FDA for bone pain.  It may be at some point in the future, he will recommend for Sam to try it.  Forget what it is called, but I will remember eventually.

Several times today I found myself fighting back tears...cannot wait until I can go a full day with doing that.  Another one of those "eventually" things.

Sam also met with a respiratory therapist at the VA who gave us all kinds of information about using oxygen.  Things we never even contemplated, although most of it is common sense...like no open flame, meaning not being anywhere near candles, smoking, BBQs, wood stoves, gas stoves, etc., etc.  Sad thing is, that really rules out our camp trailer.  There is no way he would be able to negotiate the steps, anyway.  We are both quite glad I insisted on getting a lot of my site visits completed in May and June.  Gave us an opportunity to get out and camp.  So for now, we will have to find other lodging facilities which have handicap facilities and wheelchair access.

So, here we are, getting ready for Friday.  So glad the weekend is upon us!

q'ua

Tonight I am not going to write much.  Spent a major portion of the day at work, more than I anticipated.  Unfortunately, we are extremely busy and, unfortunately, we have yet to meet with the VA for a personal assistant for Sam - phone tag is the name of the game on that front.  Tomorrow we meet with the radiation oncologist for a follow up from the radiation on the femur a few months ago.  Dr. Chung always enlightens us with all kinds of information, so it will be interesting to hear his thoughts this time around.

I am driving Sam nuts, I think.  I keep seeing his eyes roll up into the back of his head.  Of course, I am looking at him from the side, so it freaks me out.  Even more so because his breathing is so crazy, so then I am asking every 5 minutes, are you ok?  Poor guy is just falling asleep, or at least trying to anyway.

We are both extremely tired this evening, so are off to bed early.

Thank you again to everyone.  More cards arrived today (Julie M...yours was one of several that cracked him up!) He kept repeating "Gray Bar" which made it even funnier listening to him.

Cathy D...thank you for the shower seat hints.  Very helpful and after the catastrophe last night, today he told me he needs it.

Sweet dreams everyone.

q'ua

I am determined to be cheerful and happy in whatever situation I may find myself. For I have learned that the greater part of our misery or unhappiness is determined not by our circumstance but by our disposition. Martha Washington

Timing is everything as all of you know. Today we fully expected to say no more treatment, we will just see how it goes for awhile, possible hospice, whatever...instead we are ending the day feeling much more positive about the short term future than we did when the day started.

Recently the FDA approved two new drugs, both in pill form, one for Sam's exact type of non-small cell lung cancer with a specific bio-marker (EGFR) and the other a blood thinner, which means no more injections in the belly!  Because they are so new, the VA needs to order them so it might be next week before Sam gets started on the Gilotrif for the cancer and Xarelto for the blood clots.  We go back to both doctors in a month to see how things are going. Hopefully no more excitement like this past week.  

Speaking of which, Dr. Davis from the VA kindly explained to Sam what happened with the pulmonary blood clot, and is still happening until it completely dissipates.  Just to give you an idea of Sam's thought process now, this is the 4th time (minimum) someone has taken the time to explain this to him.  Dr. Davis' description, though, I think finally got through to him.  Basically, the blood clot in his right lung is at a major intersection and is spanning out in 5 different directions (just like fingers) all at once.  Sam responded with a "so I almost died" statement and the doctor nodded his head.  When we left, Sam continued to talk about how serious the situation not only was, but still is.  The blood thinner is mostly to prevent new blood clots from forming but also to (hopefully) help slowly dissolve the current ones which, as I have previously noted, could take a long while.  We also discussed Sam's oxygen level, especially since when we left home it was at 78%.  Any movement on his part causes massive pain and decreases his oxygen level.  The two go hand in hand. Therefore, the need to be on oxygen 24/7.  I just have to find a way to keep him from tugging the oxygen tubes off during the night.  This morning I suggested duct tape (it's the Alaskan way, don't you know?) but he did not seem to find that very funny like I did.  What is up with that?  Anyway, he is learning to adjust the oxygen according to whatever it is he is doing which is a continual work in progress.  Two things he will have for the rest of his life, oxygen and blood thinners.  

Had about an hour between appointments so enjoyed some
and fresh air at Valley of the Moon park today.

At the oncologist's office, we discussed many things.  First, Sam's pain level.  If he is sitting completely still, the pain is between a 5-6 in his hips/pelvis area.  Any movement, it shoots right up to a 10.  The meds help bring it down to a dull numbness for a few minutes.  The challenge is that the meds also make Sam very spacey.  We did discuss why hip replacement is not an option for Sam in that it would create more problems than he already has since there is nothing to attach it to as the pelvis is quite fragile itself from the cancer.  It is like there are lots of tiny little fractures throughout the bone and any additional stress would not be good.  The new cancer drug just approved by the FDA in the past week or so, Gilotrif, is meant to slow down the progress of the cancer, and help give Sam a better quality of life for the remainder of his life.  Unfortunately, as the doctor kindly reminded us several times, right now, there is no cure.  The most we can hope for is managing the growth.  

Many of you (ourselves included at times out of pure frustration) want to know how much longer do the doctors expect Sam to live.  Well, it is nearly impossible to even guess.  As of right now, Sam has lived almost 4 years longer than anyone anticipated when he was initially diagnosed with what we later found out was lung cancer.  Hearing the news today that there are 2 new non-chemo drugs on the market available for him to try raised our spirits enormously.  At the same time, we are dealing with the "new" normal, and that is his inability to walk and need for constant assistance.  As each day goes by, this is becoming easier for me to deal with.  I told one of my colleagues at work this morning that generally it takes me about 3 days to digest whatever is happening, and then I am able to wrap my mind completely around it, accept it, figure out how to deal with it and move on. 

Daily, I admit, I wonder when hospice will happen.  Not if, but when.  For now, though, we are entering another new chapter on this cancer rollercoaster.  Not very fun or exciting, if you ask me.  I am just so grateful Sam is still here with me.  Last week I was scared to pieces that he might not even get to come home.  I cannot thank all of you enough for everything everyone has done, and is doing, to make this transition easier for us.  You are our angels, that is for sure.  All the prayers, thoughts, notes, emails, cards, calls, texts, everything made such a huge difference.  Thank you from the bottom of our hearts.

In the next couple days, VA will be assessing Sam's needs here at home to figure out how best to help him.  That will be the next step in this process.

Hugs to everyone and thank you again.

q'ua

Happy Birthday!

Seems Sam had a pretty good day today, several phone calls, lots of cards, and just general good wishes.  Thank you to everyone!  He wanted to write individual thank you cards, and I hope you do not mind, but I talked him out of it.

He took himself outside today for a bit of sunshine while I went to the office.  Apparently it took a lot out of him, much more than he anticipated.  This evening he acted like he would not be doing that again, but...well...it is Sam we are talking about here.

Tomorrow is the appointment with the VA primary physician in the morning and the oncologist in the afternoon.  He is still talking that he is going to say no more treatment.  We all need to keep in mind, though, that even if he says no more treatment for now, he could change his mind at some point.  It all remains to be seen. No matter what he decides, it will be the right decision for him and I will support it 100%.

As for me, Alaska is one big tinder box right now.  If you live in Alaska, please be very careful.  Today I received a report of a small fire on CIRI land along the Kenai River.  15 more feet and it would have been a disaster, made even more so because the area is located between Kenai and Soldotna.  Crazy thing is, there is no need for campfires right now anyway.  Daylight lasts until the wee hours of the morning and the temperatures are extremely high for us.  And remember...you will be found if you are the guilty party.  Be safe and be smart.

q'ua

We keep moving forward, opening new doors, and doing new things, because we're curious and curiosity keeps leading us down new paths. Walt Disney

Today proved to be a rather easy day.  We ventured out to Walgreen's for those special socks to help with the circulation in his legs.  Also ran into Fred Meyer for a few minutes.  The trip out felt good for both of us but caused great pain for Sam getting in and out of the truck.  Slowly we are developing a routine of how to travel with the wheelchair and oxygen.  We are both so grateful he does want to get out in the fresh air.

Late last night we discussed what the most important thing is right now and decided it is the pain in his hips, pelvis and leg from the cancer.  The pain is so great, Sam struggles to manage it with the pain meds.  When we meet with the oncologist on Tuesday, that will be the focus of our discussion - or at least that is the game plan today.

Tomorrow I will be going into the office for a couple hours in the morning.  That will be a challenge probably more for me than Sam as I will be worrying constantly about any issues he might have, such as twisting the oxygen tube around the wheelchair.  Oh boy!

And in case anyone is wondering, I am a member of the best book club ever.

q'ua

“Ah! There is nothing like staying at home, for real comfort.” ― Jane Austen

Sam is as comfortable as can be for now.  The pain in his hips and pelvis is almost impossible to overcome.  Every little movement seems to send pain shooting through his entire body and in turn, he struggles to breath even with the oxygen.

Today he enjoyed a great visit with our minister, Ron Myers, from First United Methodist Church in downtown Anchorage.  Come to find out those two have more in common than we ever imagined.  I let them chat and did my own thing, I think it was a nice break for both Sam and I.

Yesterday Sam received flowers, a balloon, and an adorable stuffed dog from his friends, Berna and Jovy, who live in the Philippines.  They were on Sam's staff when he worked at NetSuite in San Mateo, CA.  It was a wonderful surprise and certainly brightens up our tiny living room.

As for me, I am starting to think of the oxygen as background white noise so that I do not even hear it most of the time.  Yeah for me!  I admit, though, I am getting a little depressed about not fishing.  Just saw pictures of silvers caught on the Little Su, our favorite fishing spot.  Today was opening day and they limited out.  My goal is to get Sam strong enough that we can go out at least one more time camping and fishing, but as of right I just do not see that happening.  Might be able to get him to a cabin, although it will need to have electricity!

q'ua