“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

“Life is full of beauty. Notice it. Notice the bumble bee, the small child, and the smiling faces. Smell the rain, and feel the wind. Live your life to the fullest potential, and fight for your dreams.” ― Ashley Smith

It is now the middle of summer in Alaska and thank goodness Sam is no longer in the hospital, although I certainly could have used one more day to prepare for him coming home.  Because of the pulmonary tumors, the blood clots and who knows what else, oxygen 24/7 is the name of the game with a wheelchair as the primary transportation.

Last night I, for one, did not get much sleep.  He continually pulled off the oxygen in his sleep.  One would have thought he would be used to it after a week in the hospital with it, but apparently not.  Whenever it got pulled off, Sam started struggling with his breathing which, in turn, woke me.  Usually without waking him I was able to put it back on.  A couple times, though, he did wake, look at me, try to figure out what was happening and just go back to sleep.

Any movement at all causes Sam to lose his breath.  He probably spends a good 10 minutes each time he moves catching his breath before moving again.  This process is exhausting and Sam is finding many ways to avoid any movement.

Today we spoke with the VA case manager and the insurance case manager.  Next week an assessment will be made for Sam's needs but for starters, someone will be coming in 2-3 times a week for 2-3 hours each.  As to when that is starting, I have no idea.  Could be Monday for all I know!  Anyway, things are moving, which is good.  In addition, my book club friends are helping us by preparing some meals.  I cannot tell you how much I appreciate this.  It is awesome.  And yesterday, the neighbors all pulled together and moved our couch and coffee table out of the condo into the hallway.  WOW.  What a difference that made.  Sam did not understand why we needed it moved, but I think he is beginning to understand.  Now to just find someone to take it away.

The dumbfounding moment of the day was the oncologist's office calling to confirm Sam's continuation of chemo on Tuesday and follow up appointment with the PA (not the oncologist).  The look on Sam's face was priceless.  He politely said, no chemo and appointment with the oncologist only.  Neither of us can believe it yet.  Anyway, we will meet with him Tuesday afternoon at which time (as of right now anyway) and Sam is going to tell him no more treatment.  Personally I think the oncologist is going to be shocked when he sees Sam and the change in him since the last time they spoke.

Sam asked me to take him outside for a few minutes today.  It was pleasant and we took Rocky with us.

It is so difficult to see the tall athletic and energetic man I love slowly deteriorating.  It is even more difficult to not let him see my tears and hear my fears, even though there were several times this week while he was in the hospital when I just could not hold back any longer.  I am glad he is home with me because no one knows how much longer he will be.  

Thank you everyone for your support this week. I would have never made it without you.

q'ua

Happy Birthday, Sam!

Just a thought.  Sam's birthday is Monday.  If you would like to help him celebrate, how about a fun birthday card?

Sam Glass
1201 Denali Street #307
Anchorage AK  99501

Please note, this is a secured access building.

Big news.  The doctor just discharged him with the words of " you have a very special situation.  You need to be home where you are comfortable for whatever is the remainder of your life."  It was very kind.  We will be headed home in an hour or so.

Today the doctor decided Sam is to start practicing with the wheelchair to see where his oxygen levels are at and to see if he is ready to go home.  I think he needs the oxygen, Sam thinks he needs the oxygen, the doctor thinks he needs the oxygen, but as we all know, what we think and what the insurance thinks are generally two different things.

I asked the doctor point blank (out in the hall away from Sam!) if this is a hospice point and his response was "not for the blood clots but you should talk to the oncologist about the lung cancer" since that is what is really affecting his breathing.  The doctor believes the clot in Sam's lung is slowly dissipating and how he is able to tell that is beyond me.  He quickly qualified all this, though, by reminding me things can change on a dime (no duh) and we will just have to wait until tomorrow to see how things go.  The doctor also said that what they are doing at the hospital is no different than what would be happening at home...well...I beg to differ because right now there is no oxygen at home, no nurses to stay with him while I run into the office, etc., etc., etc.  I spent some time making calls to the social services department at the hospital as well as the VA so we could get things up and running. Personally, I want things in place before Sam gets home because once he is home, there will not be time to do all these things....like rearrange things to make it easier for him to get around in a wheelchair in our tiny little condo.  Does anyone want a perfectly good queen-size sofa sleeper which has been tenderly loved by the cats on the sides?

Just to give you an idea as to his oxygen level and his shortness of breath - when he sits up on the side of the bed, he needs to rest about 10 minutes catching his breath before he moves to the next position, regardless of whether it is standing up or moving into the recliner which is right next to his hospital bed.  And people wonder why I am concerned.

It is exciting the doctor is thinking about sending him home, but I do not want him here until the time is right.  I have said my peace at the hospital and I am not too sure anyone listened.  That will be determined tomorrow.  One thing is quite clear, I cannot discuss this in front of Sam.  He will make his symptoms disappear if he has any inkling I am concerned about him coming home.  It is odd, though, that I am at peace with the lung cancer issue, but not with the blood clots.  I have thought this through, but I am not ready to discuss it here yet.  Way too emotional.

Anyway, it is now 10:11pm and I need to go fold laundry and get other things done to prepare for him possibly coming home in the next couple days.  And all I really want to do is go to sleep.  Which I might do anyway and just ignore the laundry for now.

Happy Birthday to my mom and to our son, Alex, both of whom turned 21 today.  :)

q'ua

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34

Each day is a new day!  Today the doctor visit proved to be a bit more informative than we anticipated.  Yesterday and this morning the nurses focused on asking Sam about going home.  When I heard that, I about had heart failure myself.  Luckily, when the doctor showed up, he put a stop to it all in one sentence.  Sam is not to do any excessive movement due to the clot next to the right side of his heart.  Any excessive movement could cause a massive coronary and that would be that.  The right side of his heart is working hard to do what it is supposed to, only it cannot.  This leads to the left side of the heart needing to basically work overtime.  Hard thing is, the left side is dealing with pulmonary tumors which have more or less flattened some of the veins and arteries. Sam's situation is much more dire than either one of us imagined.  The doctor does want him to slowly begin moving, starting with just going from the bed to the bathroom and that is only if he can do it without losing his breath. The doctor does not want Sam (as of this morning anyway) to even think about going home until he is able to walk around PCU without needing to rest.  This might be a long haul.  Then again, he might get up tomorrow and be able to do just that.

I go from being scared out of my mind to being as positive as ever that he will be up and running in a few days.

Tonight Sam is complaining about a lot of pain.  He just told the nurse he experienced a wave of pain that shot through his entire body and felt like knives stabbing him.  Now the pain seems to be focused in the hip area and feels like pins and needles.  His pain level hovers around 8-9 which is rare for him.  Normally it is about 4.

For those of you wondering, yes, I am eating - probably much more than I should.  I also am getting out of the hospital for a few hours each day, continuing to work from Sam's room and then going home at night, returning early in the morning.  If you have never had the pleasure of a hospital experience, in order to be present during the doctor's daily visit, you need to get here early and then practice patience because you never know when he or she is going to show up.  No fault of their own since there are many patients to see, but this OCD person would sure appreciate a schedule.

q'ua

Well...you've certainly had all kinds of birthdays in your life. Sam talking to me tonight

No kidding (sarcasm at its finest!)  Sitting in a hospital room is certainly not what I have ever anticipated for my birthday.  However, I am not surprised because my dad has historically had his major heart surgeries around Thanksgiving.  My family has enjoyed several Thanksgiving meals in hospital cafeterias.  Anyway, I digress.  As usual.

The hospitalist who began his work week today finally understood about Sam's pain meds schedule and got things adjusted accordingly.  The weekend staff chose not to listen to what Sam said about his routine and attempted to wean him off of some of his meds.  Oh boy.  I am proud to admit I stayed quite calm during that discussion this morning.  His pain level, though, is continuing to fluctuate and he began complaining about the right side of his chest again late this afternoon as well as his right leg earlier today.

When I returned from lunch at the office, the social worker was here.  Caught me by surprise but her role is to help make sure Sam has what he needs when he gets home.  She is supposed to work with the VA on all kinds of things from a personal assistant (hey, I need one of those too!), a walk-in bathtub and a variety of other things.  We will see how that plays out.

Tonight his color is good and mood is ok.  His left leg is still quite swollen and his right leg is now starting to look that way as well.  Not good.  Sam's trying to walk using a walker but putting any weight on his left leg is completely impossible as of right now.  He needs to walk in order to get his circulation going.  Just a vicious cycle.

So...we are still here.

For everyone who wished me a Happy Birthday today (as well as called...Mom & Dad, Virgil & Mary), thank you so much.  Made the day much more enjoyable.

q'ua