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

Sam's pain is much better today, probably a combination of pain meds, blood thinners and whatever else he is being given. The swelling in his left leg seems to have gone down a bit and it is not as hot as it was yesterday. He says the knives which were pricking him in the chest have also decreased, but again, do not known if it is the meds or the painkillers or a combination of both.

The RN did give me a shock when he was in. Sam's blood counts are off and if they do not get resolved, it is possible he will need a transfusion. They will be doing full blood tests again tomorrow so we will know more then.  More than likely this is from the chemo, but as with everything else, hard to know for sure.

Sam's mood is much better than yesterday, too, for which I am extremely grateful.

Thank you everyone for all your kind words of support. They are greatly appreciated. Sam needs to get better because silvers (Coho) will be in soon and they are calling our names!

q'ua

Writing this from my phone so I apologize in advance for grammar and spelling!

Sam was admitted about 1 today to Alaska Regional. He'll be here for 2-3 days at least as they work through everything that is going on. Hia spirits are good but he is in a great amount of pain. They are doing what they can and are treating him very well. Also waiting for cultures to come back because there is also an infection as he has a fever which is quite rare for him.

Yes, in answer to those wondering, I have been home, showered, rested and am now back at the hospital.

The RN did get right down in his face to tell him what a lucky guy he was to still be alive. Not sure it got through to him because of his meds, but she is right...he is a lucky man.

Thank you for your thoughts, prayers and support. Makes a huge difference.

q'ua

In a battle all you need to make you fight is a little hot blood and the knowledge that it's more dangerous to lose than to win. George Bernard Shaw

So much is going on, I am not sure where to even begin.  Nor can I remember where I left off.  As I  previously noted, Sam's left leg is giving him trouble.  One night a few weeks ago, he showed it his very swollen ankle.  Surprise!  Shortness of breath also became an issue, so much so last week we were in Seward for my work and he insisted I bring him back on the 4th.  Little did I know he planned to call 911...and what a shock I got when I decided to take advantage of coming home for a short bit to take a quick shower and find out as I am walking out of the bathroom wrapped in towels that he called 911 just before I got out.  Hello.  Admittedly, my first thought was, (my Anchorage girlfriends understand what I am saying here...) oh boy, AFD is coming to visit and here I am.  Quick!  Get dressed and comb out the hair!  Took me about 20 seconds compared to my normal 20 minutes and that is before the blow dryer comes into play.  Then I realized I probably should be worried about my husband, which of course, I was...but AFD was coming to visit!  The paramedics who showed up were so kind and gentle with Sam, it really did almost make me cry.  By the time they arrived, Sam's breathing had relaxed, so his vitals were actually quite good.  Because he did not mention his leg, they told him that the shortness of breath was probably a result of the progression of the cancer and that even if they took him in, there was probably nothing anyone could do.  Which, in the grand scheme of things, is very true.  Would have helped if he had told them about his leg!  And by the way, just because I am standing there does not mean I have permission to speak, don't you know?  Anyway, long story short, at chemo on Tuesday he finally showed the physician's assistant and the nurses his oxygen levels went crazy whenever he moved, lowering to the low to mid 80s.  Not good.  But...again...everyone continued to insist it is due to the pulmonary tumors in his lungs because he still does not mention his leg.  ARGH. If only I could have a few minutes with the staff....

Last night, after checking his oxygen content several times, and then asking me to wake him when I got up for work this morning, he promised to call the doctor and tell them everything.  So off to work I go, and in the middle of my 11:00 meeting, I receive a text...doctor appt at 2, need ultrasound first, have to check in at desk by noon.  Luckily, my meeting is close to home, I make it there in about 2 minutes flat, get to Regional in record time (all the while the back seat driver sitting next to me is telling me which route to take through Fairview to get to Regional the fastest, but please do not speed, ok?) We get into Radiology and I am watching the ultrasound and I am seeing what I expected to see...a blood clot.  Not just a little one, either. It extends from just above the left knee to just below mid-calf.  Sam is so very lucky.  I pray we caught it in time.  When he received the results, he said..."so it is true."  Twice a day he is to inject himself in the belly with enoxaparin for 10 days.  Tuesday, unless something happens before then, he goes back in for one final chemo treatment this round.  Monday, this chickie is calling the doctor and chatting with him because today he was told by the staff it is due to him sitting in the wheelchair all the time. HELLO!  The reason the wheelchair is even here is because of the pain he experienced when standing on the leg.  I do not know who to be more angry with at this point, Sam for not telling everything (but, in his defense, he is on heavy pain meds, so he is lucky to remember his name at times) or the staff for being so...so...so I don't know what!  Anyway, I am calling the office on Monday.  Sometimes a girl's gotta do what a girl's gotta do.  Even Sam commented on the way back from the VA pharmacy that the blood clot might have been around for a couple months or longer.  No kidding.  Ok, the sarcasm is starting to show through, so I better get off this subject and talk about something else.

Tomorrow is Fairview's (our neighborhood) Block Party.  If Sam is up to it, we are going to head on over during our Saturday stroll.  This summer's weather has been amazing, even the week of rain we had.

CIRI property at Crooked Lake

As for me, work continues to be extremely busy.  Summer is field season and my job is to deal with land access matters, including educating everyone that CIRI is a private company which means CIRI lands are private lands, not public lands.  It is a common misconception that the ANSCA corporations, especially the regional corporations, are public agencies.  They are not, never have been, and never will be.  Everyone needs a permit to be on CIRI and/or its villages' lands.  Does not matter who you are or what you are doing, you need a permit.  They are extremely easy to apply for and relatively easy to get (unless it's a big project and those tend to take awhile). If you do not have a permit, you are in trespass...meaning even those people who believe Fire Island is public land.  Just putting the word out.  In a couple weeks CIRI's Land Department is beginning a huge public education campaign.  Even if we can get this message through to one person, we will consider it to be a success.  So Alaska friends...take note, please.

Did I mention AFD came to visit?

q'ua

It is the evening of the day, I sit and watch the children play; I sit and watch as tears go by. Mick Jagger, Keith Richards, Andrew Oldham

Yes, I am living in nostalgia this weekend as it is the Evans' family reunion which once again, I am not attending. So, I am feeling quite sorry for myself knowing the fun that I am missing. My cousin Peggy was an extremely talented musician and I used to make her play this song for me over and over again so I could sing it.  Luckily she was extremely patient, plus she loved to play and sing herself so it worked out well.  She is now in heaven and I am sure she has everyone rocking and rolling now right along with her.

Out for an afternoon stroll.

Sam is doing pretty good.  After many months off from any treatment, and after discovering that the cancer is once again spreading rapidly, Sam decided to try another line of chemo.  This time it is Gemzar which originally was for breast cancer but is also used in other types which have spread like Sam's has. Once a week for 2 weeks, then one week off, and then it repeats. His pelvis, hips and left leg are pretty much, as he puts it, like Swiss cheese.  Walking is almost impossible, therefore 3 weeks ago the wheelchair became a household staple.  He uses a cane in the condo and a wheelchair whenever we go anywhere.  It is painful for him to walk and painful for me to see him grimace in pain.

He did tell the doctor and me that if he does not see an improvement in the hips/pelvis/leg, he sees no reason to continue the chemo.  Personally, I would rather he not be on it as his quality of life really suffers which in turn means mine suffers as well.  I do not want to go through another summer like last year, if it can be helped.  One nightmare is more than enough in my opinion.

The other night we had a lengthy discussion about where this is probably going to lead.  He mentioned hospice and, well, I can completely understand why.  He is struggling to breath, struggling to walk and struggling to cope with the pain.  Going on hospice, though, only means that the pain management will increase and all other treatments will stop.  Sam could be on hospice for a long time.  Then again, as we all know, it could end tomorrow.  If nothing else, Sam has done his best to make the most out of his situation.  The minute the wheelchair was delivered, he was online ordering a camera, flag, gloves and a variety of other gear.  Crazy man.

As for me, summer is in full swing meaning work involves long days of site visits.  The thing about Cook Inlet Region, Inc.'s land is that there is a lot and it is cookie cutter, meaning it is all over the place.  Takes a lot of time driving, flying or whatever to get wherever I am going, but I love every minute of it.  Have not yet had an opportunity to go fishing, but hope to sometime in the next couple weeks.  The freezer is empty!

q'ua