Roger S. Wethington 5/10/1960 - 8/19/2012

I've been searching...searching for the words to post.  And I realized the problem isn't the words escaping me, rather the problem is there are no words adequate to express the thought, the emotion, the loss, the heartbreak.  There simply aren't any words.  The impossible became possible.

The beautiful, creative, kind spirit I have had the pleasure (and sure a little spousal frustration) of loving for the past 17 years of marriage and known for over 25 years is gone.  Roger left us quietly Sunday evening just before 10:00 pm.  He was here at home with me at his side and our cat Hemi snuggled around Roger's feet.  The moment was quiet and as peaceful as it could be. 

Roger has been slowly making his exit for sometime as you've come to know through our blog.  His slow exit became more accelerated over the last month and most especially over the last week.  As much as I wanted to scream (and did in the deep depths of my heart),  "Don't go.  Please don't go." I didn't and simply couldn't do that to him.  This poor amazing man has fought so hard for so long.  Three, very very long difficult years.  As his body continued to become more frail, and his strength and dexterity left him, and his cognitive ability continued to fade, I found that I couldn't possibly ask him to stay...no matter what my heart was saying.  Infact, the last week, I told him it was ok to go.  And now, sitting here in the stillness and quiet of our home, needing him and missing him more than I do the air I breathe I still realize he needed to go.  He is gone to create a new adventure.  He is off to create new more amazing art, build more grand homes, set off to sail beautiful blue waters in another world. 

Roger has touched so many with his skill, his talent, his generousity, his friendship, and his love.  He has imprinted deeply on my soul and is a forever part of me.

 I know the loss and hurt so many of you are feeling and have been expressing to me.  Roger would be so touched to know all of the love and admiration you feel for him.

For me, the saddness and grieving comes and goes in waves.  Sometimes a small wave washing against my shore, other times a tsunami swallowing me whole.

I don't know how much longer I will continue the blog.  I think I'll keep it for a little while to share stories which come out from friends and family at the memorial services and the celebration of life gathering. 

I'm sorry Roger had to leave us but am relieved he will not be suffering any more.  And, I truly feel fortunate I had this amazing person - the love of my life - for 17 albeit it too-short years. 

~ angie

Early post

Rather than wait until the end of the evening when rational thought and energy have all escaped me, thought I'd try posting a little earlier. 

We had a an exceptional special, perfect moment yesterday.  It was early evening, say 5:30 or 6:00 ish.  Roger was quietly sleeping.  I was outside in our courtyard chatting with a friend who had stopped by for a quick visit.  As she and I were talking, we heard a "ph-thunk" against the window near the back door.  Hmmm.  Earl the fat cat jumped...ok lumbered up to see what the noise was.  Meanwhile a hummingbird hovered about 2-3 feet above Earl. Obviously the bird was not worried that the rather substantial cat would get him.  It soon buzzed off.  I decided to check out what the noise was....turns out a little hummingbird whacked itself against our window.  I picked the little guy up (only a foot away from Fat Earl) and held it in my hands.  It was breathing but limp.  My friend grabbed on of the many hummingbird feeders I had hanging and brought it to me.  I held the little guy up to it and for

ced its teensy weensy little beak into the sweet liquid.  We could see its little throat moving and if we focused hard enough we could see its tiny tiny little tongue slip into the nectar.  Well the little guy was simply out of it and could barely stand on the feeder.  We decided to leave him be to come to his senses.  My friend meanwhile left.  I went in to check on Roger and then would dance in and out of the house checking on Roger then the little bird then Roger then the little bird.  You get the picture.  As the little guy was trying to recuperate he was being dive bombed by another hummingbird (they are HORRIBLY territorial).  So, THAT was not going to work.  I cupped the little guy in my hands and decided, if I could wake Roger, it would be the perfect moment to share with him.  Likewise, it would get the little bird out of harms way.  Roger not only woke from his slumber (harder and harder as of late) but he pet the little guy's head as I gently held the bird in front of his face.  It was soooo cool.  Never mind the harms way I put the bird in with the THREE cats now in the house two of which are abled bodied and would have loved to chase a little birdie.  In retrospect my little perfect moment could have gone horribly wrong and been a horror show of sorts.  Fortunately the stars and moons aligned and I was able to share one more special moment with Roger. Wish I had had one more set of hands to take a picture of Roger petting the little guy's head and see the small smile on Roger's face.  Truly precious moment.

Roger's pain appears to be well controlled. He rarely winces with pain and if he does then I push his pain button and the wince slowly disappears. He continues to quietly fade.  He is no longer eating...I think its been 3 days and is drinking very little.  His time is spent sleeping.  When he wakes albeit it briefly, I try to get him to shift or rather I try to shift him in bed for fear of bedsores forming.  He will give me a brief smile, a brief locking of eyes when he wakes momentarily and then will slip back to sleep.  Its sweet and sad...bitter sweet. 

Roger and I talked on Monday...the last day we really had much of a conversation, he pointed to the room and said "this is a good room, its square AND, its a no tears zone."  So, as a random tear leaked out, I quickly dried it and smiled at him and said "you're right. Its a no tears zone."  I'm afraid I'm going to be breaking that rule soon.

I've been able to stave off much of the sadness and heartbreak but know I can't much longer. I've been able to channel all my energy and sadness into caring for Roger...fighting the fight.  

Sitting here quietly listening to the rain hit the windows, mixed with the deep breathing of my darling husband.  The cats have vanished (they hate storms).  Can't imagine my world without Roger but am watching him slowly vanish before my eyes.

~ a & r

The setting tonight:  Roger snugged into his bed (as he has been all day) with virtually every pillow in the house safely cradling his frail body.  Two of our four-legged friends are in the room, one of whom spent most of the day with Roger in bed.  Me, I'm in the recliner tonight.  I've added about 4-5 inches of padding and blankets and comforters.  The chair is positioned exactly the same as the bed's incline.  While I'd prefer to be snugged in next to Roger in bed, I just can't dislodge him from his nest.

I've thought about what to post tonight several times today and came up with random thoughts:

Thought 1.  Cancer is a thief:  it steals your peace of mind, it steals time, it steal life, it steals so much.  It has taken Roger's dexterity, his personality, his wit. He has lost most of his ability to control his left hand which is heart breaking for a guy who worked with is hands as much as Roger did.  I've watched him to the point of suffocation on my part, as he tries and tries to use his left hand to pick up a pill and simply cannot do it. 

Thought 2.  Perfect and imperfect moments.  My friend Katie shared with me an expert from a blog she follows.  The author referenced Chronos and Kairos time - my simplistic read was imperfect and perfect time.  Roger and I have certainly seen plenty of both.  Imperfect time - the everyday stuff, sometimes drudgery.  Then the perfect moments which include holding hands, a simple smile or simple statement. This morning, I was buzzing around and turned to look back at Roger.  He was actually staring at me.  I asked, "And what are you looking at?",  I expected no response.  He blinked his beautiful blue eyes and said, "The woman I love".  Hmmm, a perfect moment. 

Thought 3.  Peace.  All we can ever ask for ourselves and other is peace.  Simple, quiet, soul resting peace.  This morning, I think we both found it.  Roger woke very lucid (he's been more spacey and out of it).  He talked about the comfort of the room, and the comfort of where he was, and that he was happy that it was the two of us together.  I asked if he was at peace, he said yes, I feel very peaceful.   He did asked about moving the bed, which is ironic because I had literally been thinking the same thing before he actually voiced the request.  I thought it might be nice for him to see the fish tank, the TV and the view out the window.  He just had a wild hair. So, I moved everything out of the way, and proceeded to move the bed with Roger in it.  After shifting it all around, we both decided it was better the way it was.  oh well.

Bunch more thoughts floating around out there mixed with a whole lotta of emotion all flowing from a very heavy heart.  Cancer is stealing Roger away.  We - Roger - has fought hard and it seems like such a contradiction to stop fighting but his body just can't do anything more.  He said this morning, he is just soooo tired.  Who wouldn't be after this fight?  And through it all, he has remained an amazing spirit.  He's a super hero to me. 

Gotta go. We spent most of the day holding hands and I can't hold his hand now when I'm busy typing.  Think peaceful thoughts and send them our way.  all our love, a & r

Weekend? What weekend?

Actually, it doesn't matter whether its a weekend or not.  All the days are blending together.  My best way of keeping track is this daily medical journal I keep about Roger, each day I start with the day and date....my reference point....and then enter how the prior evening went, what the pain levels were, how coherent Roger was/wasnt, bowel movements (sorry, too much info, I know), as well as what Roger ate...or as of late what Roger didn't eat. 

All things said, the weekend was an ok weekend.  We had brief visits from Aunt Barb and Uncle David, my folks, and our friends Katie and Joe as well as our new renters for one of our rental properties.  I know you must be thinking, "what?  Why would renters come visit? "  Well, its interesting. We have had terrible luck with renters and quite frankly I had planned to NOT rent the property again. Sell it for whatever I could get and be done with it.  When this family called me out of the blue.  They are latin american.  And, just about the nicest people (so far).  I have run into.  They insisted on painting and cleaning the house (prior renters did us NO favors) and do as many repairs as they could (Eric and Paul bailed us out AGAIN on the other repairs).  Anyway, everytime I would talk to the father of the family he would say he wanted to make sure Roger saw pictures of the house and how they were going to take care of it, etc.  He asked if he could meet Roger and show him pictures.  So, I checked with Roger and he was, very suprisingly up for meeting Victor Ramierez.  Today Victor and his ENTIRE family (all six of them - 5 of which are adults!) showed up.  Everyone of them shook Roger's hand, and chatted with him. All the while showing beautiful pictures of what they had done to the house.  I know I know.  I shouldn't get all excited, but honestly stupid as it sounds, I - rather WE - try to think the best of people AND we like to try to take care of others.  So, we'll see. This will be our third latin american family in the house.  Based on the work they put into the house with NO guarantee I would rent to them....I have a reasonably good feeling.  As for Roger, well, he had a small grin on his face when they left.  The other touching thing is they offered - through the one daughter who spoke the best english - to come sit with Roger if I ever needed to run errands. They said it would allow them to get to know him better and would allow them to pick his brain since they love our rental house and all the beautiful work Roger put into that house (it was our old house prior to this one).  Anyway, a very sweet offer. 

Saturday as mentioned above, we had laughs with David and Barb.  Roger was able to get the "boss" in him out when David offered to "trim" (ummmmm, SCALP) our trees in the courtyard.  You see, we have these two trees which were supposed to be small trees which have grown and grown and were rubbing against the gutters of the house on the second floor.  So, as the four of us sat outside chatting in the courtyard you would here the skreech skreech skreech of tree branches against the gutters as the wind blew.  For me, I view it as the house and nature communicating. Roger and David did not agree.  So with an able bodied helper, Roger was able to get the trees trimmed.  David became Roger's extended self.  Our little trees no longer communicate with house and now look like they have a crew cut.  :-)  Actually its a good thing in the long run....I just told Barb and David they were going to make it to the blog as Tree Scalpers....and actually I should say DAVID is the tree scalper.  Barb tried to be the voice of reason but there was no stopping Roger and his mighty helper!

As you can tell, Roger made it outside Saturday. It was a beautiful day to sit outside.  He was awake for most of the time and participated in the conversation.  Today, however, he was pretty snoozy which makes sense because he had a bad night last night.  He went to sleep at 11:00, work at 1:00, at 3:00, at 5:00, at 7:00 and then 9:00.  I gave up around 7:30.  He was having problems with that mucus stuff.  Sooooo I got out the motion sickness patch again today to try it.  I *do* think it helps but also think it adds to his existing exhaustion.  Today, though, I cut the patch in half.  We'll see how we do tonight and tomorrow.  Cross your fingers. 

As for food, well, its been a constant "nudge" by me  (nudging sounds better than nagging, huh?).  Despite CONSTANT nudging the food count today was 2 pancakes and 1/2 an egg, a popsicle, a peach, 1/2 a kiwi, a bite or two of brownie, 1/2 a lite protein drink, and a bite or two of cookie...and THAT I believe was it.  Not enough to sustain a humming bird and certainly not enough to sustain a sick husband. 

We had yet another clash of the titans albeit a small one, though a recurring theme.  Roger was "indisposed" and I was changing the linens on the bed.  I ran upstairs to chase down pillow cases and new boxer shorts for him.  I specifically said, "now do NOT get up until I get back.  I will have new boxer shorts for you and linens for the bed. Do NOT get up, got it?"  Response, "yep, got it."  Upstairs I race and frantically flip clean close from the laundry basket onto the abandoned master bed.  Rooting through the massive pile, I pull out several clean pillow cases and a new pair of grunderoos.  Back down the stairs I race and to the half bath on the main floor to find skinny-mini STANDING on his own pulling up the existing boxers (NOW you can tell where he was).  And in my most NOT controlled caregiving way I barked, "DUDE!?!?!  WHAT are you doing?  I thought we agreed - YOU agreed- to wait for me.  WHAT if you fell???  ARE you trying to kill ME?  It would absolutely destroy me if you fell again." blah blah blah, you get the tone. His response which cooled the tempest in me, "I knew I was fine, plus, I gotta learn how to do this again and get stronger."...ok, so, I got nothing.  All I could do was extend my hand into his, grab his pain pump and lead him back to the bed.  Once he was snugged back into bed, I continued the balance of the evening preparation.  As I left the room I held up my fist and indicated "POW, a knuckle sandwich".  To which Roger raised an eyebrow and said he'd be sleeping with one eye open.  Probably a good idea.

We both try to find moments of humor and levity and simple displays of love all of which get more precious as Roger gets quieter with increased naps lasting longer and longer. 

more soon.  hugs, a & r

I thought I had posted yesterday and looked back to see it was WEDNESDAY.  Roger and I both are losing track of time.  It all blends together.  I can keep track for work stuff but lose track for anything beyond that. 

Tonight will have to be a quick post.  I'm pooped.  Roger is pooped.  So, here's the quick scoop.

Pain was up today.  The nurse came to change out his medicine and bring a new supply as well as change his port access.  She was a diiiinnnnnngggggg baaaattt.  Every other word was "is this how your regular nurse does this?  What kind of tubing are they using?  Oh, I'm not familiar with that."  Gotta tell you, she did NOT instill any level of confidence in me.  I hovered to act as a double check.  Kinda think it was a good thing.  She was nice enough and all.  I just don't get the impression she calls on patients much.  Our nurse had an emergency and couldn't make it to see us.  Oh, well.  We just learn to be more diligent in our watch. 

Roger has been chasing the pain most of the day and hasn't been able to get comfortable.  We've shifted pillows alot.  Moved him from the bed to the recliner to the bed to the recliner.  He has also complained of some shortness of breath.  We've shifted this evening to the bed.  I've set up my bed next to his a little earlier than normal.  Hoping we have as good a night sleep as last night (10:30 - 6:00!!!).  I'm apprehensive.  As I type, Roger is using this device with a compressor to suck the phlegm and mucos out of his mouth and throat.  So the load rumble of a small compressor shakes our family room.  Cats usually scatter when I turn on the machine.  Regardless, it seems to help. 

Despite being in pain and pretty tired, Roger did have a couple funny moments albeit humor not to be shared in "polite" company.  The first (which will NOT be spelled out) was this morning.  He had taken a sip of drink.  I turned to see him with his cheeks full falling back asleep.  I tapped his arm and said "dude, you're not a chipmunk.  Either swallow or spit that out."... a moment later he whispered, "that sounds like a joke that goes...."  and here is where I will NOT spell out the comment but had to do with swallowing or spitting.  Such a funny guy.  NOT.  Then later in the day, Paul had stopped by to pick up something.  As Paul sat next to Roger, Roger dropped something or asked me to do something at his feet (I've blocked out WHAT he asked me to do).  I stood up to see my skinny husband giving Paul a high five and saying to me, "I managed to look down your shirt AND Paul got a look too."  REALLY???  REALLY????  The man just isn't right.  Granted, he has a twisted sense of humor which trickles out when I least expect it.  Funny man.

We've had some serious conversations lately.  As we have many times over the years.  They are just so much more poignant now. 

Well, gotta go.  As I mentioned at the start of this post.  I'm pooped.  He's pooped.  Cats are pooped.  Whole lotta pooped on this end.  xxooxxoo ~ a & r

Life is all about balancing

We all look for balance at some point in life.  Work/Life balance.  Eating too much/eating too little balance.  Drinking too much/drinking too little (is that possible?) .  Anyway, you get the picture.  Its all about balance.  We find ourselves looking for that balance on a daily balance.  And maybe, "balance" isn't the right word.  There is a fine line we maneuver as Roger's condition becomes more fragile.  He has been sleeping nearly non-stop over the last two days.  The fine line or balance is waking Roger to eat, to hydrate, to talk with visitors, to exercise his bones/muscles verses sleeping.  He says he wants to eat, drink, etc. but then falls asleep mid-bite or mid-drink.  I've had to rescue cups on the verge of tipping held in Roger's thin hands.  I've also had to rescue (sometimes not so successfully) bites of peanut butter cracker, iced cupcake, etc.  Thus the increased quantity of laundry lately as I'm constantly changing out linens. 

As I mentioned above, Roger slept the majority of the day today.  He did wake around the lunch hour.  Decided he needed to use the bathroom which proved unsuccessful.  I told him we needed to watch that because a couple of the medicines he's on have a side effect of possible difficulty in urinating.  He responded he wanted to try a bath before we resulted in having to call the nurse to do a catheter.  Ok, a bath.  No big deal, right?  We've done at least three since we've been home.  So as is the case with all the other trips to the tub, we started to mobilize.  I carry the pouch with his pain medicine and pump.  I slither under his arm pit and he uses a cane in his other hand...and off we set, very slowly to the stairwell and then navigate, one stair at a time upward.  Again, no big deal...we've done this drill.  Well, today.....Roger was much much weaker and spacey.  As we made our way up the stairs his frail leg (one side is significantly weaker than the other) kept giving out.  Additionally, Roger's balance must be off.  I kept coaching him to lean forward into the stairs as we moved upward.  He kept leaning backward.  We finally made it to the top step, paused to catch our breath and get our senses.  All the while I continued to say "you've GOT to lean your weight forward dear.  You are leaning back and its pulling us both. We are going to end up in a ball of bones and ooze at the bottom of the stairs"  He responded "I AM leaning forward."   So the Titans clashed again.  Nonetheless, we made it upstairs and got him into the tub.  Getting him out of the tub proved to be much more difficult.  He simply had NO strength today whatsoever.  I ended up having to get into the tub behind Roger and squat behind him to lift him up to the tub's edge.  We finally got him out and let him rest in our bed.  I had called for reinforcements (my brother and dad) to assist with the return trip down the stairs.  They showed up moments later and assisted with the trip back to the recliner on the main floor.  Not sure if this was just a bad random day, if he was exceptionally pooped, or if this is his poor body weakening. 

As I've mentioned before, Roger's voice is gone due to the paralyzed vocal cord.  He speaks in whispers only.  And lately those whispers have gotten even more faint.  So our ever resourceful friend Paul stopped by with a solution today!  (me thinks he has found a way to torture me and the cats) He set up an amplifier and microphone for Roger to use.  Now, he can give directions to me and "yell" at the cats and we'll actually hear him!  Hmmmm, a good thing....or a bad thing when the Titans are clashing.  :-)

Thats it for now.  Hope your world is what you want it to be. Ours is slowing down and getting a lot more quiet.
love, a & r

A formula for you

One adjustable hospital bed plus one skinny human weighing about 120 lbs plus one human weighing somewhere between 95 lbs - 200 lbs (how bout that range?), plus one furry 4-legger weighing 12 lbs, plus one furry 4-legger weighing 16 lbs = one super cozy family bed with 4 relatively snuggly beings happy to be with each other.  That little formula has replayed itself the last several nights with different variations.  Sometimes one fur ball, sometimes two fur balls but always two human beings for at least some point in the evening....I absolutely LOVE to snug up to my skinny hubby. 

The last two nights have been a study in opposites. Extreme opposites.  Saturday night was a GREAT night. Roger slept from 11:30 to 9:30!!!! Holy Hell it was freakin awesome.  Neither of us could believe it!  In stark contrast...last night (sunday night) .  Went to bed at 11:30 ish like always.  Woke at 12:30, at 1:30, at 2:30 and at 4:30.  Holy hell...not in a good way holy hell...but holy hell in a bad way.  He had the phlegm mucus thing going then had to go to the bathroom a couple times.  It was a loooonnnnnggggg night.  Not sure if the day of visitors had any impact or if it was just good ol' freakin Murphys Law at work.  (by the way...um, HATE Murphy...whoever he or she is). 

It was a big day today.  Roger had loads of visitors which was good albeit a smidge exhausting.  Keeps his brain engaged. He sat outside for a majority of the afternoon which means a trip down and up 4 steps in the courtyard.  Then after all the guests left, he decided he wanted a bath.  So, up the 15 stairs (yep, I know EXACTLY how many stairs) and into the bath he went.  With a soft sigh *ahhhhh* he settled into the water for a soak.  He shaved off the beard he was toying with and lathered up with some yummy frufru soap.  A couple hours later we were making our way back down the stairs and him into bed.   Balance of the evening was changing linens on his bed, doing some work, cleaning the kitchen, putting clean dishes away and dirty dishes into the dishwasher and then laying out all the evening stuff and drugs for the night.   Now in the quiet of the evening I'm left to the dueling snores coming from my skinny husband and my slightly (ok, more than slightly) overweight cat. 

Roger's pain today was under decent control.  On a scale of 1-10 with 10 the worse he said he averaged a 3-4.  Spikes upward and downward depending on how much he moved, etc.  He didn't eat a lot but gave it the college try.  1 1/2 eggs and 1 1/2 toast for late breakfast, icecream bites, 1 piece of cheesy garlic toast, buttered popcorn, 1/2 a cookie.  Will work on more food especially protein tomorrow.  Getting harder and harder to get him to consume protein. 

Our silly moments of late include me teasing Roger with a random flash of the bootie or my mammary glands (sorry Dad...I gotta keep my hubby engaged).  Tonight Roger looked at me with a roll of his eyes and said, "what, that's it?? "  You see,  I didn't give a complete show. Gotta leave SOMETHING to the imagination!  His comment was, "you need to give my imagination a break...help a guy out here. " yah yah yah.  Sooooo sorry.  You're STILL going to have to work for it.  NO breaks here. 

My brother Alan is working on a trip to the State Fair for the three of us.  Roger has ALWAYS loved going to the Fair and so have I.  It was an opportunity to eat corn on the cob, pork stuff, beef stuff, and all sorts of food fried that shouldn't be fried.  I didn't think Roger would even consider the idea but when I floated it by him he actually said, you know, that might be a lot of fun. sooooooo, I think we may give it a whirl.  Roger loves to go to the farm tools and wood working area.  me?  I just love corn on the cob...well, corn on the cob...AND Roger. 

The week should prove to be busy.  More family and friend visits all week.  Plus, I'm hoping to get him into the spa (that sounds sooooo sheshe...makes me laugh to say it) to get a massage. Work stuff.  Rental property stuff.  You name it and we're gonna try to do it. 

Gotta go.  I never know when he is going to have a good night sleeping (which means WE have a good/bad night).  Grab the zzzzz's when you can.

love and hugs to all. a & r.

Another day.  Another night. Another day...and another night.  Yesterday and today were relatively quiet. Roger tends to be sleeping more and more.    The visiting nurse showed up Friday morning around 8:30 to change his pain medicine supply and change his port access.  Once she left, he was back asleep and slept on and off all day.

When he's awake, his appetite is decent. Though erratic.  Thursday he ate 4 Longs Donuts (if you're here in Indy, you can understand why) and an assortment of other food. Friday was another story, a couple donuts but decreasing in quantity. And today?  Well, still less. Roger's Uncle David and Aunt Barbara came for a visit complete with some yummy friend chicken and an eclair. Roger managed to stay awake on and off and had a couple bites of chicken.  He had a couple bites of French Toast this morning made by our neighbor across the street, and then this afternoon, 1/2 a hot dog, couple few bites of ice cream and half a protein drink.  All you can do is try to nudge him to eat but its up to him and up to his body.  Pain is under much better control so I can't point to the pain as the reason for him not eating much.   Maybe the pain medicine might be making him super groggy and therefore impacting his appetite.  But we really haven't changed anything.  Not upping the dose by any means.  In fact, we are reducing one of the drugs (with the doctor's approval....). We are reducing the nerve pain drug, neurotin.  It was 3 x a day, we are backing it down to 2 times a aday and then will go every other day then, every two days...etc.  Apparently you cannot just stop this drug...gotta ween off.  I had hopes with each reduction of the drug there might be an uptick of his energy and uptick of his personality.  Unfortunately, I haven't seen that yet.  Still hoping. 

Roger has had moments of silliness...those illusive Roger-moments which used to happen daily.  He has certain favorite subjects to pick on...me and my brother  Alan especially.     Alan came for a quick visit this evening and was the victim of much Roger teasing.  The teasing would come between moments of dozing off. Good laughs.  Even if at my brother's slight expense. 

We are sitting here this evening watching the Olympics.  What a great mindless thing to watch without turning into a complete tv-zombie.  He is lounging in the hospital bed with the head side turned upwards.  I've pulled his recliner next to the bed.  I just reached over to pinch his skinny butt.  I was waiting for some sort of response as I kept pinching him lightly.  Hmmmm nothing.  Then I looked down at his hand....he was kneading the air like the cats do when you pet them.  Too freaking cute.  Speaking of cats.  Here are a couple pictures of Roger snugged with Yoda in one picture (just his head peaking out from the covers) and Hemi.  The cats seem to be staying close to him.

The only feline we don't have a picture of in bed with Roger is our rather, um,  substantial cat Earl.  He's a mere 25 lbs (Roger disputes and claims he's 30 lbs).  Well when you're a mere 25 lbs its takes a whole heck of a lotta umph to get up on the bed, so instead Slim walks around our feet looking for a pet and then goes and settles on his blanket in the corner.  All the while, every time any of the cats come around for a pet, Roger reaches down to give them a faint stroke down their back. 

Cancer continues to slowly drain the strength and some of the life out of Roger.  The latest toll is his strength in his left hand.  In the middle of the night he has virtually no strength and no coordination in the left hand.  During the day it gets a bit stronger but not much.  He cannot tightly grip anything.  So, we are very strategic where we put his drinks, his food, his pills, etc.  I know its incredibly frustrating for him.  Having said that, Roger the Super Hero keeps trying...keeps fighting.  He had me get a brass boat prop from storage so that he can try to build some sort of sculpture.  He has tasked my brother with coming up with another part to be incorporated into the sculpture.  I have a feeling he may have Alan help with the construction if he can't get his fingers working the way he wants.  Anyway, he continues to impress me with his fight, his strength and his perseverance.

Roger's overall balance is decent.  After he is awake, come mid morning, he can lift himself out of bed and balance beside the bed.  We don't have him walk without the assistance of someone else, just in case. 

Our routine is to slowly wind down the evening...watching TV (the zombie maker)...I get him settled into bed - fluffing and arranging pillows - raising and lowering different parts of the bed until we find the magic spot.  Then I fetch his various pills for night as well as a new beverage.  We now have a new part of the evening ritual. The nurse ordered a sucking-device-machine (little mini compressor) with a long tub and a sucking hose at the end.  In the middle of the night...wee hours....when Roger is congested and coughing fluids and goo...then he can use this machine to suck the crud out.  I get up, turn the machine on (the cats go flying different directions).  He uses the hose/straw to get the crud out of his mouth/throat.  I turn off the machine.  Reposition him, push his pain button and we both settle back in for the next few hours until he wakes again.  Last night we made it to 2:00, then again to 6:00, then again to 8:00 and then I gave up and got up. Roger kept snoozing until about 10 on and off.

With the above long post, I think I've caught you up. We're gonna keep trying to squeeze out as much life as we can each day.  I will continue to support his wishes, desires, and basically anything he wants. I'll continue to be his fierce advocate, tenaciously protecting him (poor hospice nurses and doctors...NOT).   And, I'll continue to hope for a miracle. 

Days are long.  Nights are short.  Days blur together.  And throughout this blurring od days/nights, the over riding theme is...there just isn't enough time... no matter what. 

Much love, a & r

As usual, I am posting late into the evening.  I am encircled by my males - Roger in the adjustable hospital bed next to me, Earl the fat cat on the blanket on the floor, Yoda the furry cat snugged under the covers with Roger, and Hemi the six-toed feline at my feet.  We are all settling in for the evening.  Hoping for another good night. Last night Roger slept from 11:30 to 6:30 and then went back to sleep until 8:30!!!!  It was a amazing.  Big sleep. 

The day was a big one physically. Roger was up and about (with assistance).  He made a trip to the basement (very very scary for me - details to follow) and made not one but two trips outside to sit in the back courtyard.  It was a beautiful day and he didn't want to stay couped up inside.  So, I mobilized our operation.  Moved a bunch of his pillows, his water, cookie, etc outside to the back courtyard along with my laptop, office phone, cell phone, etc.  He snoozed outside in the shade of our umbrella and I made calls for work and did email.  We're quite the pair.

Roger's strength seems to be up but so is his sleeping. It seems to take him longer to come out of the night fog.  Nonetheless, he does seem to have more strength to lift himself up from a sitting position. 

This morning, like a dog with a bone, Roger became obsessed with going to the basement.  You see, Mr. Murphy of Murphy's Law fame, visited our house while we were in the hospital.  We have a water filtration system in the basement for the salt water fish tank.  The stupid thing sprung a leak and sprayed a stream of water 20' across the basement workroom.  I mentioned to Roger there was still standing water in some of the storage bins, etc (my dear parents cleaned up the larger mess).  This was enough of a bone for the skinny dog, Roger, to latch onto and he simply would NOT give up.  So, we gathered up his pain med pump, his cane, and our wits and slowly made our way downstairs.  There was a bit of the clash of the titans. Roger is stubborn.  I'm a smidge stubborn.  I did NOT think it wise to venture down the narrow staircase with no hand rail.  Roger didn't think it mattered.  oooooooh, he is a silly man.  Fortunately there was no harm no foul.  No pile of bones at the bottom of the staircase.  But lordy lordy it was an adventure.  Anyway, alls well that ends well.  We made it down and back upstairs and Roger was able to survey the situation.  His uncle David came for a visit who ventured downstairs this afternoon to help as well. 

Roger has had a few silly moments which are a small bit of evidence of the pain being under control, at least for that time in space.  Today, as he was munching grapes (appetite comes and goes...and I prod the WHOLE way), anyway, as he was nibbling on grapes he looks over at me and says "will you do something for me?"  Me:  "sure, whattdoya need?"  Roger: "will you peel my grapes for me?" .....WHAT??????????  I turned and looked at him incredulously only to see a smirk on his face.  Ha ha.  Really funny.  Someone fancies himself royalty.  Peeled grapes.  whatever.  Funny guy.

Weight continues to be a challenge which causes further challenges with Roger's strength etc.  He lost a ton of weight (which he didn't have to lose) in the hospital.  He's now down to approx 122 lbs.  Pretty much paper thin.

The evening is ticking away.  I need to go.  Tonight I'm sleeping in the recliner.  The past several nights I've been sleeping on an air mattress at Roger's bedside.  Its comfy and all but is 12 inches lower than Roger.  As I told my folks today, I miss sleeping with Roger, insanely miss sleeping with him/next to Roger.   So, tonight the recliner will allow me to sleep at a level more parallel to Roger.  Not the same as sleeping with him, but closer.  My mom is going to research other bed options to see what we can come up with. 

g'nite. Hoping we all have a great night's sleep and a better Thursday.   a & r

Happy Monday

The day was a descent day all things considered.  It was also a busy day.  Roger had another "good" nights sleep 11:30 - 5:00, then slept and work at 6:00 and 8:00.  Really good by our standards.  It was the same drill of waking having to void this phlegm stuff.  We are trying hot tea with ginger and honey before Roger goes to sleep.  Apparently ginger and honey are supposed to be natural help for controlling digestive issues.  Who knows if it works or not....still gonna keep trying. 

Roger spent most of the day in bed or in the recliner.  His pain was mostly under control and he was awake a good portion of the day. 

We had an appointment with Roger's oncologist today. He is going to follow Roger and be the primary doctor on his case verses the hospice doctor which is a very good thing in both our minds.  The hospice doctor will be the second.  We will continue to work with the hospice program and will have access to their services to use or not use as we are comfortable.  Today we gave Dr B an earful about our displeasure with the hospice workers and their attitude...."Unlimited access to pain meds...we'll whack you out of your mind to control your pain...so what if you are unconscious."  We were very clear with Dr B that Roger did NOT want to be unconscious.  He wants to experience as much of life as he possibly can with minimal pain.  The trade off of being "pain free" but UNCONSCIOUS was NOT acceptable.  We felt as though the hospice staff was a springboard to the "next phase"...and we are NOT there.    Dr B agreed with us and said he supported our position and would be happy to interface with the hospice staff or if we want facilitate transfer to a different hospice group.  Which we may end up doing.  I was pretty fired up with Roger's whispered support at my back.

We challenged the doctor (as we had with the hospice workers who seemed to dismiss us) that Roger's weakened state could be due to a multitude of things: the high dose of narcotics he is on, the fact he has been nearly bed ridden for 3-4 weeks, the fact he hasn't eaten much due to the high pain, etc.  The doctor agreed and said all of these factors, as well as the advancement of his disease could weaken Roger.  Having said that, Roger seems to be getting a little stronger.  He is getting up from the chair, bed, etc more on his own with little assistance than previously.  He is trying to exercise his arms and legs as much as he can using resistance bands to help.  In case you can't tell, I think my husband is somewhat of a superhero.  He has been battling cancer for over three years with constant pain, loss of weight, etc.  And yet, like the Energizer Bunny he keeps going.  Keeps trying.  He told the doctor today, "I'm not done".

Roger has been trying to eat more.  Today: 2 waffles with jam, 1/2 a hamburger with cheese, several cookies, 2 poached eggs with toast....that's a whole bunch for him!! 

Our ongoing "garage sale" continues with success all due to the tenacity of our friend Paul (thank you thank you Paul).  We had another happy sad sale.  This time, Roger's Mini Cooper.  It really made us both sad.  The right thing to do because it was no longer a comfortable car for Roger to drive or ride in.  Waaaaay too much of a zippy, rough sports car (a la go-kart on steroids).  But the car represented a whole lotta Roger.  Seeing it go, well made for a sad afternoon. 

Anywhooooooo, we are focusing forward.  Pushing all of our energy into strengthening Roger's muscles as much as we can, encouraging him to eat anything and everything he can/will, and keeping our mental/emotional energies as positively focused as we can.  Life aint easy.  Life with cancer, really aint easy.  But, its easy to love your people and we do that.  And its really really easy to love your person... and we both do that. 

Sending special hugs and thanks to our family and friends who have continued to rally behind/beside us.  Thanks for all the food, drink, assistance, errand running, etc.  Thank you thank you thank you.  The words arent sufficient but all we have to offer at this time.  Well that, and our love and admiration.

~a & r

 

Quick post

All is fine on this end.  Settling into being home.  Cats are happy we are home.  WE are happy we are home.  Sleep has been a challenge with Roger waking every couple hours to cough up/spit out this phlegm stuff.  Pretty icky and horrible feeling for him.  Last night however was a good night in that Roger slept from 11:30 - 5:00 a.m.  A very good night for him and therefore for me.

Today Roger spent most of the day sitting up in his recliner which was refreshing to see him out of bed.  Our friend Paul and I helped him down the stairs in the back courtyard where he sat for a couple hours visiting with his mom.  A small nice return to a little tiny bit of normalcy. 

Was going to post earlier this evening but we had a little unexpected turn of events.  Roger's pain medicine is dosed to him intravenously 24/7.  We were told it should last until the nurse returned on Tuesday.  Well......not the case.  The pump let off warning beeps that the medicine reservoir is EMPTY.   Oh, not a good thing for a guy who has chronic uncontrollable pain.  So, we called the 24/7 nurse line and requested more meds.  The nurse just left about 20 minutes ago and we've been trying to settle in for the evening.  Fortunately Roger's pain wasnt out of control when the machine ran out of juice.  Nothing like a little adventure at 11:30 at night!!

So, gotta go. Roger has taken his sleep medicine which means the window for getting sleep is closing quick. 

Hugs to all. a & r

Home sweet home

I've heard from many of you - wondering if we made it home - so its my bad I didn't post before now, but I was simply too pooped to post....and I was in a really bad space.  Yes, we made it home and both of us sighed a huge sigh of relief.  Cliched as it sounds, there really is no place like home.  We were no sooner home and Roger tucked into the hospital bed when one of our trusty heat-seeking fur balls was up on the bed snuggling with Roger and Roger was all the more pleased having the company.  It really was the cutest thing to see.  And throughout the day/evening the cat (Hemi) would jump up, nap, leave come back and nap some more while Roger would randomly reach down to give him a pet.  In our house, the feline is man's best friend. 

I won't go into great detail about yesterday because 1) I am anxious to go to sleep, and 2) it will piss me off all over again.  First, last night was rough.  Roger slept poorly.  Woke at 1 with pain, 2 having to spit phlegm (what a gross word, huh?), woke at 4 having to spit, and again at 6.  Each of these wakings, he was pretty out of it and required guidance/assistance.  Sooooo, it wasn't the most restful of nights.  Tonight, he's snoring already, and I am - for the first time in almost two weeks going to actually stretch out.  I've been in recliners for most of the past two weeks.  Tonight, I'm sleeping like a queen on an air mattress on the floor next to Roger.  And honestly, I'm so excited I could jump up and down!  Cross your fingers and toes that we have a good solid nights sleep. 

Yesterday was frustrating as hell (this is the piss me off part).  We no sooner got home and got Roger into the house (thanks Paul, thanks Dad) when a social worker from the hospice program showed up with all kinds of touchy feely questions in tow.  Likewise she jumped us with a series of "do you have your affairs in order" questions.  AND, she KNEW we had just got home.  REALLY???  You couldn't wait a day or two or a week????  No time for all the gory details suffice to say I told her she could call in 2 weeks and we'd let her know what if anything we needed.  Then, as if they social worker wasn't enough, the nurse showed up.  Should have been simple enough, check his meds, make sure we had no questions, set up the next visit. Bingo Bango she should have been gone.  Nooooo she decided this first meeting only an hour after we got home was the appropriate time to discuss "moving on to the next phase".  That's all I'm gonna say.  Theres a time and place for everything.  Yesterday within hours of us being home was NOT the time. 

Anyway, we are home.  We are happy to be home.  And we are getting settled again.  Seems like it was a million years ago since we were last here. 

Will try to post tomorrow or Saturday but really need to go.  Sleep is precious and limited in our world.  I hate to miss any.  Love and hugs to you all. a and r

A good day

Today was a good day on multiple fronts.  First and foremost...Roger's pain appears to be under control.  The IV pump with the big time narcotic seems to be doing its job and controlling the pain in conjunction with this nerve medicine, neurotin.  When asked throughout the day how the pain ranked on a sale of 1-10 with 10 being the most intense, Roger responded most of the day as a 2, or 3, or 4.  There were spikes upward when he moved, but for the most part the day was a lower level pain. 

That's the first part of the good day.  The second part of the good day is that Roger got to take a bath.  Holyhell the nagging, requesting and persuading we had to do.  The day nurse came up with excuse after excuse as to why Roger shouldn't take a bath.  Um, yah, not a good idea with me.  I swatted each down with a rebuttal which left the nurse dude (tall skinny guy) speechless and finally resigned to say, "ok, we'll do it."  Within moments of being in the tub, there was a sign of relief from Roger and a smile on his face.  We both extended our gratitude several times over.  The whole process was annoying until we got him in the tub - everything from the constant begging, arguing we had to do etc to the ARMY of people this male nurse enlisted the help of, to the fact the water wouldn't warm up very hot.  Once we got Roger into the "bath...room" he was greeted by not one, not two but three old gal-volunteers, our male nurse, the nursing assistant.  He looked to me in horror like "whatthehell is up with this huge audience of people".  Realizing, despite our constant emphatic statement "we've got this, we don't need all this help." NO ONE would budge.  Ok, so we decided not to fight. Roger wanted a bath and I wanted Roger to be happy so, ok, an audience it will be.  He had donned his bright yellow, Dr Seuss "One Fish, Two Fish, Red Fish Blue Fish" boxer shorts (bet you will never guess who bought those....I LOVE Dr. Seuss) to maintain a little modesty.  He was goaded into taking them off because they would get wet and make a mess.  Again, with the focal point of wanting to have the bath , Roger caved in and I went along.  In the whole scheme of things, big deal.  He shed his adorable boxers and stood in his skinny, naked glory.  Long story short, he got his bath.  Within minutes of being in the tub, he was smiling and sighed a sigh of relief. All embarrassment behind him. 

We've had a couple funny, silly moments.  As you can imagine, with all these drugs on board, Roger gets pretty snookered pretty quickly.  The morning through noon tends to be the worse.  So the other morning, he was having a hard time staying awake.  He was dozing off while eating oatmeal (UM, NOT pretty), while brushing his teeth, etc.  This same morning we were trying to have a conversation before the doctor came in to plan our attack and what the conversation would be with the doctor.  The conversation quickly turned one sided as Roger started to mumble jumble.  I finally said "honey, lets stop.  You go ahead and take a nap and we can resume this conversation when you're awake because you are not making any sense."  He paused.  Blinked his eyes a couple times (I thought the precursor to him falling back a sleep...) and then responded very simply, "No, I think its YOU.  I understand EVERYTHING I said....YOU just don't understand."     Hmmmphfffff.

Roger has been making a concerted effort to eat more (today: 2 pancakes, 2 hotdogs, 3 cookies, pasta, pudding and a couple bites of a milkshake) and a concerted effort to exercise more.  We've done a couple laps in the room from one corner to the other.  As a result of these efforts coupled with the doctor getting Roger's pain under control, we are happy to report.... WE ARE GOING HOME TOMORROW!!!!!!!!!!  OH happy happy day!!!!!!!  We are both so very excited there aren't words.  The house has been set up with hospital bed, and other similar medical equipment on the main floor.  We have a walker to help Roger with mobility and independence.  He has sworn to enlist assistance every time he moves.  We, he, cant afford another fall. 

Once we get home, we will have a nurse to the house 3 x a week initially.  We can increase or decrease the visits as needed.  there will be a home health aid who comes to the house once a week to help with bathing etc.  Again, we can increase/decrease assistance as needed.   There will be a social worker who comes by to do touchy feely stuff.  Make sure our "mental well being" is being well....or something like that.  I anticipate more battles to be fought but maybe fewer in total than when in this facility.  Oh well.  I'm not looking to win a popularity contest, merely looking to get my husband as well as we can, as pain free as we can, AND squeezing every drop out of life as possible. 

Cross your fingers for a good day tomorrow, and a good night to night.  Last night was good.  Would love a repeat. 

xxooxx, a & r

An early post

Thought I'd try to post a little earlier today. 

Last 24 hours have been a small roller coaster.  Yesterday, Roger did relatively well for the majority of the day.  He seemed to have increased strength in his arms and body and was able to move and adjust himself in bed on his own. Its tempting to jump up and try to help him adjust or move pillows but as I pointed out to Roger's sister who came for a lengthy visit yesterday, we need to let him try to do as much as possible to work on his mobility and keep his muscles moving.  And, he did a great job of it yesterday. 

He also showed increased strength in his legs (albeit slight).  This will entail the proverbial "too much information" but is great proof of his ability.  I help Roger get out of bed to go to the bathroom (see, too much information).  The way we do this is Roger raises himself in bed and scoots to the edge of the bed swinging his legs down towards the floor.  I position myself beside him and squat down next to him, then on the count of three with my arm around his waist and his arm across my shoulders up we go.  When we were in the hospital, it took more of my effort to raise Roger up.  Here, Roger has lifted himself entirely.  I am of course there as support, backup and a safety net.  The lion share of the effort is all Roger.  Likewise, (too much info) lowering and raising himself to the commode.  These are huge accomplishments in our book.

Roger was pretty pooped last night. he didn't have a nap yesterday and it showed last night.  So he dozed on and off.  A good thing except it sometimes can lead to broken sleep. He woke at 2:30 with pain and used his pain button a couple times.  Then eventually he fell back asleep.  He woke again at 5:00 with extreme pain. We worked for an hour to reposition him, push his pain button and try to get him comfortable.  He eventually fell back asleep at 7:00 for another couple hours. 

The doctor came in around 10:30.  We discussed the night, the morning and the game plan for today.  Game plan: leave current pain drip and on demand dosage was bumped up. We then decided to add a nerve ending drug.  Roger this morning had extreme pain/sensitivity of his skin.  He said the touch of the sheets on his skin was excruciating.  So, the doctor felt we needed to address nerve pain as well.  The goal being to get through the weekend and then on Monday consider an MRI to see if we could determine the source of the pain and thus help with better controlling the pain.  Sounds reasonable enough.  The downside is this nerve targeted drug has the tendency to knock you out.  So the directive today was to let the drug work and try to sleep as you feel the need.  So, we didn't have any visitors today.  The focus was a quiet day to help Roger sleep when he felt the need.  And so he did, sleep on and off throughout the day.  Additionally, we have Roger on IV fluids - simple saline solution.  It took us pushing the doctor and explaining Roger has chronic kidney stones.  The doctor tried to suggest getting the fluids orally but unfortunately Roger just can't consume enough by mouth to stay sufficiently hydrated.  So, I pressed...in an effort to control his pain and prevent additional pain (i.e. kidney stones) it is prudent to do fluids.  A small long-eye from the doctor and he agreed to write the order.  As we sit here, the IV pump is driping 1000 ml of sodium chloride (saline) into Roger. 

The doctor suggested we limit the visits to shorter visits and maybe at certain hours so that Roger could (whether he is on the sleep inducing drugs or not) sleep when he felt the need and let his body try to recover.  Having said that, if you are inclined to visit, we ask that you touch base first and when you visit you limit the visit to no more than a couple hours.  And finally, please please please call or text before bringing food.  We have a little dorm fridge which is full to the brim and the staff here brings breakfast, lunch, dinner (albeit hospital food) and brings a snack cart around everyday.  Soooooo we have oodles of food.  If there is something we are craving or need, we promise we will let you know when you call or text.  We promise!

Roger has been very focused on trying to get some exercise as much as he can.  So last night and today, we have done a couple laps here in the room.  Which, for a guy who has been very sedentary for the last couple weeks, is like a mile for everyone else. He's also trying to increase the strength in his arms and hands by squeezing a stress ball.   Additionally, he has been making a concerted effort to EAT.   Today included a donut, a ginger snap cookie, two hot dogs, a little bit of a milk shake, a couple bites of roast beef, a brownie, a couple slices of apple with peanut butter, and now, as I sit here and blog, he is sipping a protein juice.  FREAKIN AWESOME!!!!  This is probably more than he's eaten in the entire last week.  I leaned in a kissed his shiny bald head and said thanks for trying so hard.  He said, thanks for helping me and staying by my side.  Silly man.  Thats the easy part.

As you know I like to share what I call perfect moments, a smile, a touch, a gesture of kindness by some random stranger, you name it...last night, as we were snugging in for the night, Roger was tucked in with 8 pillows circling his body wedged into ever nook and cranny of his body.  He had taken his ambien (from the safety of the bed, finally) and his ativan and push his pain button and was slowly approaching the land of nod.  I was settling in next to him in this large recliner with pillows wedged around and behind me trying to get comfortable.  As my head hit the pillow, I see this thin hand snake out from under the covers in the bed next to me and that thin, cold hand reached out to hold mine as we both fell asleep.  See?  A perfect moment.  Well, in my book its perfect. 

Going to go for now.  Roger is awake and I like to capture some of those waking moments as well.  Might even crawl into bed with him to snug a bit.

Sending virtual hugs your way. Luv, a&r

Fine tuning

We continue to fine tune Roger's pain meds.  I am pretty sure I am on the most wanted (hated) posters of the nurses and doctors here.  I continue to challenge what they are doing.  Today they wanted to increase both the base line continuous drip dosage and the on-demand dosage of Roger's pain meds.  And, they wanted to jump the dosage a large amount.  I am pretty sure Roger would have been totally zonked all day from it.  He verbalized he did NOT want that and vocalized his preference.  Additionally I made the request that the doctor and nurse practitioner explore Roger's viability (right word?) for this epidural kinda thing.  Again, I got the long eye like "who are you to make these requests?"  The doctor in particular seemed to have a little bit of a snit.  Oh well.  Too bad.  I finally started saying, "look, maybe with some patients around here being comatose is ok but Roger wants to be active and cognizant and aware of what is going on.  Yes, he wants the pain controlled as do I but we think we can get there without his eyes being rolled in the back of his head has he is passed out from drugs".  You can probably tell I was in a little bit of a snit myself. 

We had a parade of medical workers coming in and out.  Nurses, nurse practitioner, doctor, floor nurse supervisor, social worker, home discharge liaison, etc etc etc.  Literally, a parade.  Had lots of good visitors too but the combination of visitors and parade of medical people has left Roger pooped.  He is now snoring away merrily across the room from me. 

Tomorrow holds more medicine tweaking. We thought maybe we might be going home.  Now it sounds like Monday.  I'm itching to "break" him out of here.  Pretty as the facility may be....I want to get him home.  Having said that I know we need to make sure he is comfortable going home both with pain management and his ability to move around.  Fortunately he and I are working together to get him out of bed to go to the bathroom, straighten his bed, etc.  Kinda acts as a reassurance we can do this ourselves without the need of additional assistance at this point.  

I'm hoping his pain is under control enough that we can get him into their hydrotherapy tub here.  I think a bath would genuinely help with his achy muscles and bones.  A bath has always historically helped make him feel better.  So, we'll see. 

As usual, I'm signing off.  Gotta grab sleep when I can.  Last night he slept from 11:00-ish through 4:00 and then fell back asleep until the nurse came in around 5:00 then fell back asleep until 8:00.  wow, almost normal sleep. 

Take care, a & r

New surroundings

We were transferred from the hospital to the inpatient hospice facility today.  The transfer was supposed to happen in the morning.  It got rescheduled to 2:00.  The ambulance company was backed up and never showed until 3:45.  We finally got to the facility and Roger squared away in the room.  My blood pressure was up because they didn't hit the time scheduled.  In a horribly unpredictable world, I thought the transfer could at least go as suggested.  I think we both were on edge because we knew they were going to disconnect Roger from the IV pump of pain medicine to transport him to this facility.  They dosed him up with extra pain meds and got him here.  We were terrified he would have tremendous pain during the trip. 

The room is spacious and beautiful with a lovely view out in room french doors. So, you could breathe a sigh of relief for the room.  I was not happy with the staff who received us.  They seemed disorganized and simply didn't seem to have a sense of urgency.  It completely freaked me out.  Naturally, I'm a smidge on edge...but PEOPLE HELLO????  New patient with extreme pain....CHOPPY CHOPPY GET YOUR FREAKIN BUTTS IN GEAR....Ironically when we were getting ready to leave the hospital our day nurse, Marian (who was amazing!) said, "I thought about becoming a hospice nurse but ultimately decided against because I move too quickly and couldn't slow to their pace".  I thought the comment odd and that maybe I misheard her.  Now, that we are here....hmmmmmmmm.   I'm trying desperately to not go postal.  We'll see how tomorrow goes.

The pain meds were up'd again today.  Roger had a much easier day albeit a day spent sleeping or staring at the TV with a glazed over stare.  So, the good news is the pain was abated a little. The bad news is the medicine whacked him out.  Thus the continued tweaking.  We received a call from a doctor in the family.  He suggested another approach that would aggressively help with the pain but would allow Roger to be more conscious and present and living life.  Basically it operates under the same principal as an epidural women receive when having a baby. I guess, blocking the pain in this back and lower extremities.  Ironically I asked the ER doctor if they had something like that which they could do.  She said it could be explored with the inpatient doctor and the pain doctor.   Bet you can guess what conversation I will be having tomorrow with the doctor here at this facility and with Roger's oncologist. 

We have continued to learn throughout this process, YOU have to be your best healthcare advocate or have someone close to you be your advocate.  YOU have to challenge the approach.  If things aren't going the way expected then ask for change.  The hardest part of it all is trying to know all the information you need to know....or maybe just trusting your gut instincts. 

Roger is snoring away in the bed across the room from me.  I'm not in a good space today so I'm going to stop now and crawl into the recliner next to his bed and hunker down for what I hope will be a full, uninterrupted nights sleep for Roger and me.  G'nite.  Lv, a & r

Life is a balancing act...so is pain control

Roger had a more restful day than many.  The pain medicine seems to be getting closer to controlling the pain.  The balancing act is controlling the pain but not whacking Roger out so much that he sleeps away the day.  Today....he slept away a better part of the day.  Dozing on and off or he would simply phase out in the midst of a conversation to stare at the TV.  Sometimes his eyes would slowly roll back and *poof* he was asleep.   Its hard to say if its entirely due to high doses of narcotics on board or if its exhaustion from constant pain catching up, or a combination thereof.  Anyway, though I miss him when he sleeps away most of the day, I am soooooo relieved and happy he isn't wincing in pain. 

The pain medicine will need continued tweaking until we find the right formula.  We will be eventually going home with a pain pump which Roger will have to carry around with him 24/7.  A small burden to offset a big ol' bunch of pain. 

The game plan tomorrow is to leave the hospital.  We will be transferring to a hospice facility to focus on pain control and getting Roger more comfortable so that we can truly get him some sort of quality of life.  We will only be at the facility for 2-3 days to work with the doctors and nurses there who focus one 100% of their time on pain control.  Once under control to a point where Roger, me, and the medical professionals all feel comfortable, then we will be released to go home.  A hospice nurse will come to the house initially 3 times a week.  We will be able to scale up or down the visits depending on our needs.

Hospice is a scary word. No, hospice is a terrifying, stop-your-heart, make-you-want-to-vomit word.   Roger's oncologist had asked us to consider entering a hospice program over 2 months ago.  We remained resistant and flat out said no. Immediately jumping to the horrible thoughts everyone thinks with hospice.  His oncologist told us we needed to realize that hospice was born of the term hospitality and care and its true origination and purpose was care of others.  He said hospice becomes another more focused more regular set of eyes and ears to watch the patient on the  doctor's behalf and help the patient remain comfortable and pain free.  Yah, yah yah, say what you want neither of us liked the word and wouldn't consider it.  Now...in a world with Roger in constant excruciating pain, we now realize we need specialized care and assistance beyond all of the other medical professionals we have seen once a month or every 6 weeks.  Hell, I would have cut my right arm off if I thought it would have helped him feel better.  We remind ourselves just because you enter a hospice program doesn't mean you have to stay on it.  Our doctor shared a story of one of his patients who had been on hospice but was taken off the program when his condition improved.

I will tell you the past several days rank up on the scale of some of the worst...and there have been a whole hell of a lot of bad days in the last three years since the cancer was first found.  Its horrible having these conversations but you find the will, the focus, the energy to do it with the singular focus that this may help your loved one not feel pain.  And, that's what I've done - try to keep the focus on that one goal - control and remove Roger's pain - and not let any other thoughts or hurt enter in to distract me/us from reaching our goal.  Easy said.  Not so easily done.

As is the case on so many of these recent posts, I'm signing off for now.  Gotta grab that illusive sleep and Roger has just faded off into Ambien land. 

Wishing the world were cancer-free. ~ a & r

Short post

We had a rough night last night. Roger woke nearly every hour and thrashed around with pain.  The day was pretty rough too.  It was spent in a great deal of pain which was physically and emotionally exhausting for Roger. 

Pain doctor finally showed up at 7:00pm.  Medicine dosage was doubled - both the regular ongoing flow and the "on demand" pump.  Additionally the doctor changed the time between "on demand" requests.  Before Roger could push the button every 20 min.  Now, its every 10 minutes.  I think we are finally - now as of 10:50pm - he seems to be more calm.  He's taken his ambien and ativan and should be snoozing soon. 

Plan is to get the pain under control.  May be an additional 2-3 days in the hospital to make sure they have the right dose. Enough to address the pain and not to much to overdose. Its all a balance. We've ordered a hospital bed to be delivered to the house when we leave as well as a wheel chair.  If he needs them, we'll have them.  If not, then no big deal.  Cats will have somewhere new to sleep.

Like I said, tonight is a short post.  I'm officially exhausted and want to squeeze in as much sleep as possible when he sleeps. 

xxooxx, a & r

Well, we're still here at the hospital.  We did finally get moved to a "regular" room around 1:00. By the time they got all the paperwork done, tubes and wires hooked up and most importantly got the IV drip of the really really good stuff dripping, it was 2:00a.m.  Roger was given Ambien (from the safety of his bed) and Ativan along with the pain killer and within minutes he was snoozing away.  His face relaxed from the easing of pain.  He was finally peaceful.  It was such a soothing moment for both of us.  I pulled my chair next to the bed.  Wedged pillows in around me and pulled a blanket up around my ears.  I work periodically to hear him snoring or snorting as his breathing would be interrupted.  He slept solid until 5:00 when the nurse reappeared to take vitals and make sure his bladder was working.  As of then, it was not....so the subtle statement was made, if you can urinate on your own we will have to do a catheter.  Even from his sleepy, foggy state, you saw his eyebrows raise in a fogged terror and he said, "no no,  I'll try.  Just let me try."  Happily after several moments full of concentration, eureka!  You can guess the outcome.  More importantly...NO catheter.  Hallelujah!

On this new high powered, concentrated pain medicine Roger's pain has gone from 9.5 on a 10 scale to now 5-6 or 7.  Much much better.  If he doesn't move, he said the pain is a 3!  He managed to much down a popsicle, donut, some fruit, a peanut butter jelly sandwich, and some soup for dinner.  Not enough to sustain a hummingbird, let alone a grown man.  Though I don't think grown is the appropriate descriptor.  He's down to 130-132 lbs.  he's going to be see through soon.  NOT good.  So, I continue to prod and nag...."you gotta eat!  even if just little nibbles here and there."

It was a quiet anniversary.  Roger slept (as he well deserved) most of the day trying to make up for lost sleep from the last two nights.  He gave me the sweetest gift when he asked me this morning and afternoon to crawl into bed with him to snuggle.  Despite being in pain and not being able to truly get comfortable he wanted to snug together.  I tried to put him off the first time thinking his brain might be a little muddled due to the pain medicine.  I wanted so desperately to be next to him but did not, under any circumstance, want to cause him any more pain.  When he asked a third time in a row, I crawled into bed next to him and encircled him.  He dozed off and I texted while watching TV.  A lovely quiet moment.  A beautiful anniversary gift. 

Roger has been asked to have a CT scan of his pelvis and back to see if he fractured anything or to see if the cancer has spread to his bone. Additionally they want to do an MRI of his brain to see if they can determine a cause for his falling.  Roger flat out said "no".  After all the pain yesterday, he just couldn't imagine trying to remain horizontal for more than a moment as pain shot up and down his legs and back. The doctor asked us to use today, Sunday, as a day of rest and revisit the decision tomorrow.   As the pain has been better controlled, Roger has been willing to consider doing the tests tomorrow.  We're going to make sure they load him up on drugs prior to starting the tests.   Tests tests and more tests.  We both have mixed emotions. The doctor explained his reason for wanting the tests, to see what is causing the pain (if possible) and then try to alleviate or address the issue.  If the cancer has spread to his bones, they could spot radiate which would reduce the pain significantly and help improve the proverbial quality of life.  Big decisions.  Tough stuff.  We've been paralyzed by some of this decision making.  And in those paralyzed moments, all I know to do is to reach out and hold onto Roger as tightly as I possibly can. 

Well, I'm gonna go and try to catch up on some of my own lost sleep.  Wishing the world were a different place and that I was reporting about the wildly exciting and romantic trip we took to celebrate our anniversary.  Instead I will settle into the warmth of a loving husband, a wonderful marriage, and an impossible heart-crushing situation.

Not sure when we are breaking out of this place... will keep you posted about tests, test results, doctors' conversations and just life as well.  Send all your healthy strong happy vibes to my darling hubby.  Gotta keep him as strong as we can.

much love to all, a & r

Started this post last night....and now the world is different

Friday nite's started post: The repetative theme - pain - remains a constant theme.  Another restless night netted broken sleep for us both. Roger once again woke with the need to vomit.  Very little comes out of his system.  Rather it just racks his poor body as he goes through the motions.  We think - THINK - the pain has reduced a tiny bit.  That's not to say its gone but merely if he doesn't move an inch when he's sitting there are no stabbing pains.  Shouldnt be a problem right?  Except he really really needs to move to prevent his muscles from completely vanishing.  Movement has been limited to one lap around the house and two trips up and down the stairs.  Otherwise, sofa or bed bound. 

Talked to the pain doctor's office.  We're changing the program.  Low and behold, after I mentioned to them (second time, mind you) that perhaps Roger is too skinny (understatement) for the pain patches to be effective.  You see the patch medication is absorbed through the body's fat and muscle.  Roger has neither.  So, he probably has been sporting these patches all over his body looking like a patchwork quilt with no benefit realized.  New plan will be to remove the patch and start taking a long-acting 8-12 hours between doses mega-painkiller.  This will be subsidized by other pain meds for "break through pain".  We will continue to do massages.

The above entry stopped. Roger had taken his ambien before anticipated. So I knew I had a short window to get him upstairs and pillowed into bed. I walked out of the room to put our upstairs stuff near the stairwell. I returned to find Roger trying to maneuver the one step up from the living room to the area near the stairs. Ambien kicked in and he lost his balance and fell. So. We stopped. Gathered our wits. Let his heart rate slow and then helped him up and then helped him upstairs.

Fast forward. I am posting from the Emergency Room. Roger fell again this afternoon. He wanted to sit outside to visit with a friend of ours. No problem. Despite my repeated requests for him to wait until he had help, he made his way outside safely. The return trip in? Not so successful. In case you haven't been able to tell Roger is VERY stubborn. He decided he needed to go into the house. Though our friend asked if he needed assistance or if Roger wanted him to get me, roger responded "no I got it". And he did not have it. Unfortunately he fell backwards and landed on his tailbone and hip area on oue brick courtyard Per X-rays this evening, good news is no broken bones. Bad news is excruciating pain 100 times worse than before. We are staying the night. Roger is being admitted. At least for the night possibly more. He is on an I've drip of pain mess which barely seem to be taking the edge off. It's 11:45 and I anticipate we won't see his room until 2:00am if we are lucky. Pain remains the center of Roger's world and is consuming him. As I look over at him, every few minutes his face scrunches in pain.

I had hopes of posting some old pictures from our wedding. Tomorrow (technically minutes from now) is our 16th wedding anniversary. Roger asked me this afternoon if I remember where he was when he proposed to me. I laughed and said "yes, you were flat on your back on our sofa convelesing from kidney stone blasting....hmmmmm was that writing on the wall...must mean I really love you...then and now. Wouldn't be anywhere else honey. No where else".

So that's all I got for you right now. Will update you when I have an update ....and more energy. Xoxoxo. A&R. (sorry for typos etc. working from the IPad ...and the device and I don't speak the same language).

Apparently I'm not very good at keeping my promise.  So, I won't be promising anything anymore.  Might make a random statement here or there but I won't be promising.  In my last post, I said I'd post more regularly.  I think I even said the next day or two.  Nope, that didn't happen.  Reasons for broken promise:  1)  we have still be trying to get Roger's pain under control (unsuccessfully), 2) we were busy with family from all parts of the country at a family gathering, and 3) just overwhelmed with things to do. 

Our visit with family was wonderful.  I think the distraction of aunts and uncles and cousins was good for Roger.  Exhausting, but good as a distraction from the moment of pain.  The family was respectful of his space and his constant state of exhaustion.  So it would typically be just one or two people sitting with Roger.  The rest of the fam was off melting outside playing yard games, eating, boating, etc.  Everyone was also very good at letting Roger rest on his own.  It was bitter sweet as many of the family hadn't seen Roger in well over a year.  His physical and mental transformation in this period has been substantial... thus the bitter part.  The sweet sweet moments were the stories shared, laughs shared and just time spent together.  I'm incredibly grateful everyone took the time and made the effort to venture to little ol' Indiana. 

As for the pain, we are STILL working on that.  New pain meds FINALLY came in today.  Roger now uses this spray stuff under his tongue every 2 hours as needed along with his patches.  The spray can be dosed 1-3 times within this 2 hour space.  So far, we haven't noticed any appreciable difference.  I called the doctor's office and put them on notice.  We will try this for a couple days ...if there is no improvement, they need to come up with a new plan.  Roger simply should NOT be suffering as much and as long as he has been.  We are going to push up for a pump with a slow drip of pain meds if we don't see an improvement or change of plans.  The pain is consuming Roger.  He either sleeps or sits with a grimace on his face from the pain.  WE * HAVE * TO * GET * THIS * UNDER * CONTROL. I'm concerned about the toll its taking on Roger's emotional disposition.

Roger - we - have had a few very difficult emotional days recently. The reality of where we are is staring us....staring Roger straight in the face.  Last night he was getting ready for bed and came back to the bedroom with full emotion.  Through the tears, he shared the horror he felt from looking at himself in the mirror with no shirt on and how much he had simply evaporated.  All you can do is hold onto each other.  Let the tears flow and let the moment pass.  Not easy.

We are both exhausted lately. Roger's sleep has been interrupted due to pain.  He usually wakes at 2:00 , 4:00, and 5:00 or 6:00 am.  Takes another dose of pain meds, sometimes has to throw up. We rearrange all his pillows and then he settles back down and eventually drifts back off to sleep.  I have renewed respect for parents with new borns who dont sleep. 

Roger is now on the fence about getting a new car.  I've told him "no" is not an option and we need to get the car.  If it gives him a day, a week, a month or a year of happy moments then the acquisition is worth it.  Completely worth it.  We think we've found one that meets all of Roger's criteria.  Working on the logistics now. 

Well, gotta go. Roger has taken his ambien and I have limited minutes to get him upstairs before he starts getting difficult. 

Hugs to all.  Hope all is going well in your worlds and that you're enjoying the break in the ridiculous heat.   ~ a & r

Another day

Its odd.  In my mind, I think its only been a day or so since I last posted to the blog and then I look back and its been days and days.  I know many of you stay updated with where we are and how Roger is doing through the blog.  Unfortunately, there are days when I just can't blog.  No words flow.  So, I get to you when I can, when the words flow.   God forbid if something horrible ever happened, I would put the word out, so don't take my silence as anything more than the weight getting a little bit heavier. 

We are trapped....lost....in a world of pain that is cancer.  Roger has inescapable, indescribable pain.  It comes and goes but mostly stays and when it stays, it consumes Roger.  He is lost in it most days lately.  And so we both have bumbled, stumbled, or just "be-d" in our world.  There isn't much to our "be-ing" not as most of you would see your normal days.  It is mostly Roger trying not to breathe because it hurts when he breathes, and me trying to make sure he breathes, eats, and through it all, me trying to help find a way to get his pain under control. So, try and try again.  Roger gets snippy.  I get snippy.  And the cats go running for the hills.

We're gonna try this pain prescription as dosed by the pain doctor.  If there is no appreciable reduction of pain, I am pushing for a new approach or a new doctor.  There is absolutely no and I mean no reason for any being, let alone a human to go through any suffering.  No reason for this amount of pain.  None. 

Despite the constant pain, Roger has and continues to be a trooper.  He's not ready to give up.  I know he's worn out and absolutely consumed with pain and still he keeps trying.  Food has NOOOOO value to him and yet he tries (even without my nagging) to eat.  As though you couldn't tell, he's pretty amazing. 

We are hoping for a fabulous weekend with family in southern Indiana.   This afternoon, I padded Roger into the passenger seat of the car with every pillow we have in the house.  Who needs air bags?  I'm pretty sure he was the most padded, well insulated human on the roads today.  We have family converging into Southern Indiana for a reunion of sorts - hoping for loads of laughs and especially a few moments of distraction for Roger from the pain. 

As I've mentioned before, Roger wants our blog to be honest.  To be who we really are.  Life is not all sugar plums and lollipops (I hate the word lollipops).  We, like all couples, have had ups and downs and inside-outs.  Through it all, we've always known we love each other.  May not of have liked each other here and there....but loved each other nonetheless.  Lately, we have both been snippy.  Roger is decidedly checked out of life consumed with pain and I am decidedly frustrated because I can't "fix it"....can't find the solution no matter how hard I try.  No matter how many pillows I fluff, how many massages I give in the middle of the night, how many other massages I scheduled.  NOTHING works... and folks, that's not right.  If you put forth effort, and energy and you never never give up....it should get better.  Right???!!!  And then gotta tell you,  I am frustrated and sad because I miss my partner.  Miss him disperately.

And through all this, we remain vested and concerned about our friends.  We just learned of another friend who has been "touched" by cancer.  ha, touched.  More like a sledge hammer, huh?  (((I'll be emailing you back. Sorry for the delayed response to your email)))

You have my word, I'll post more tomorrow or the next day at most. Just wanted to touch base to let you know we are out here.  Still plugging along. 

love and hugs, a & r

And the kindness continues

Friday morning as we were leaving the pain doctor's office we received a call from the spa I referenced in my prior post.  The woman who called said she and the spa wanted to offer complimentary massage services to Roger and me as often as we would like.  I went from zero to full tears in nothing flat.  As the tears poured down my face, I expressed our sincerest gratitude for the kindness they showed us on Thursday and said we couldn't possibly accept this tremendous offer.  She stopped me mid-stream and said "We insist.  This is our small way of offering help.  We know bad things happen to good people.  Please let us do this for you. Let me book an appointment for you now."   The thought of this exceptionally kind and generous offer still moves us both to tears.  (there seems to be a lot of that lately).  Roger asked me as I hung up the phone with the spa, "why would they do that?  it doesn't make any sense."  All I could respond was, "maybe they see the kindness aura you radiate and they want to reciprocate". 

Trip to pain doctor didn't net any real fixes.  We are amping up Roger's pain meds to see if we can at least get it under control.  We've ordered yet another new version of the spray pain-killer hoping it might help.  Unfortuantely it doesn't come in (special order) until Tuesday.  Nothing seems to be working at the moment - so we'll try this new version of delivery.  If we don't notice an appreciable difference, then we will go back and try again.  As you can imagine, after weeks of piercing pain, his disposition isnt fairing so well.  He is exhausted from trying to deal with the pain which means he is sleeping more...or at least is trying.  The pain keeps waking him.  This afternoon, he spent move of the afternoon and evening shifting in his recliner - trying to find a comfortable position.  Around 6pm he went upstairs to lay down to see if that would help.  I checked in about a couple times.  Still couldn't find a peaceful, comfortable moment.  So, I ran a bath and he is soaking upstairs now, as I type. 

We tried another massage therapist this morning to see if we can continue to get the kinks.  She used to have a studio in Broad Ripple but moved downtown.  I loaded Roger and a bag of magazines for me into the car and drove us downtown.  This time he had an hour massage.  He said he seemed to help for the next 30 min following the massage.  As the day worn on, the magic effects of the massage wore off.  We're going to try to work in massages for him on a more regular basis.  Though I try to rub and massage the kinks out of Roger on a daily basis, there just isn't anything like the touch of an educated therapist. 

Hoping for slightly cooler temperatures tomorrow.  Not sure that we are going to get any kind of break.  We're both happy to see the rain (as is our grass) but could do without all the heat+humidity.  Can you say "sauna".  Also, hoping to get Roger out on a small walk.  Trying to stave off his muscles atrophying any further.

Have a great weekend.  xoxoxo, a & r

Random acts of kindness

We have often been the beneficiary of random acts of kindness from strangers.  Lately, more so than ever.  Today we witnessed two such events which left us in tears and rendered us speechless and a third happened earlier in the week.

The first act of kindness occurred over the noon hour.  Roger had a follow up appointment with Dr Youkilis, the Ear Nose Throat doctor who did the procedure 2 weeks ago.  The doctor was following up to hear the strength of Roger's voice, his ability to swallow, etc.  Unfortunately, we were all disappointed with the results.  While still better than before the procedure, the results are weaker than what Roger had the first couple days following the procedure.  The doctor offered up he could do the procedure again to add more substance to Roger's paralyzed vocal cord.  The risk is going under more anesthesia and the other risk is over filling the vocal cord and closing off Roger's windpipe.  He said he still didn't believe either to be an issue.  We then got into quality of life and time lines which ended with Roger in tears, me in tears and remarkably enough the doctor in tears.  He closed the personal space and move next to Roger and put his arm around him.  While wiping away tears he said he is headed to Israel on a family trip and is going to the Wailing Wall.  He had planned on offering a prayer for us and wanted us to know.  He then gently held the back of Roger's head as the tears fell.  Really a remarkable, very human moment dressed in human kindness.

Late this afternoon/early evening, I took Roger to an appointment with a masssage therapist.  When I made the appointment, I shared with the therapist Roger's frail condition and his piercing pain from the issues with his back.  I explained he had limitations on his ability to lay flat and that he may need to sit in a massage chair.  Beth, the therapist, listened as we both explained his various physiological challenges.  She quietly ushered him off to a room.  After the session, we headed up to the reception desk to pay.  The receptionist looked at us and said, "your services have been taken care of."  I immediately welled up with tears.  Roger looked befuddled (he's a massage virgin).  So he pressed and said, "no, we haven't paid yet.  We need to pay".  The receptionist repeated herself "the services have been taken care of." .  The tears meanwhile had pooled up for me and were silently trickling down my face.  I said to him "honey, its been taken care of" and the receptionist added, "your services are complimentary".  As we walked out to the car, Roger was shaking his head as it dawned on him that this woman gave him the gift of her services. We both climbed into the car with emotions openly flowing and the tears trickling down our faces. As we were driving home, I was trying to stay focused on the road and not be overwhelmed by the day when Roger shared the following while staring out the window, "Was it too much for me to strip naked for the massage?"  (it was a massage on his back ONLY)....I burst out laughing and said no, of course not.  He responded, " no wonder she wouldn't talk to me or look at me...no naked, huh?"  The massage helped temporarily.  Within 15 minutes of leaving the spa, the pain was creeping back.

The third moment of kindness came early this week.  My mom, dad, and I gave Roger and my brother, Alan, gift certificates for Christmas to take a ride in a 2-seater Indy car around the Indpls Motor Speedway.  We had the drive previously scheduled earlier in May but Roger wasn't physically up for doing the ride.  So, after rescheduling we finally went.  We checked wiht Roger's doctors to make sure they thought it would be ok.  The general sensus was yes, should be no problem.  Additionally, if, god forbid something happened, they added "what better way to go then speeding around the track - especially for you Roger".  We both agreed with the sentiment even if a little "off"".  We screwed up our courage and made our way to the track.  All of us - Roger, me, my parents (who came) my brother, and our friends Paul and Bill (who also came)  - all of us were nervous about the ride.  It was only 3 laps but the speed could get up to 140-150 miles per hour and have extreme G-force impact.  I'm including a couple photos of Roger and my brother Alan.  They both suited up and got in line.  the closer Roger got to the front of the line, the more anxious/nervous I got.  As he climbed into the car, I found my hands shaking and again, those stupid tears flowing down my face.  Had Roger been well, he would have been consumed with excitement.  Frail Roger was very nervous.  Roger's car was the first to go out followed by my brother's car.  When they pulled back into the pits, (I was taking tons of pictures), the ride coordinator must have been able to tell Roger is very sick, maybe he saw my emotion...anyway, he invited me over the pit wall to take a photo of Alan and Roger trackside with the car behind them and the timing tower in the far distance.  (third act of kindness) The coordinator got the long-eye from one of the safety guys for letting me "over the wall" (I was wearing shorts and flip flops....big no no on pit lane).  Happy ending:  Roger said he had a blast and had a genuine smile on his face...first I've seen in a long long time.  The price paid was later when Roger's bones and muscles screamed from being tossed around inside the car. 

Tomorrow marks an appointment with Roger's pain doctor, Dr. Ratzman.  I have a

feeling we will be stepping up the pain meds considerably.  We've already done a little of that ourselves.  NOTHING seems to help.  He hasn't gotten a moment of relief in over a week.  I know he's at his wits end with the continued pain.  Hopefully the good doctor will be able to up the meds or prescribe something new.  Morphine is NOT an option for Roger.  It makes him C*R*A*Z*Y.  But we gotta find a way to get the pain under control!  He is miserable and it only adds to his exhaustion.  The ENT doctor asked if the pain could be related to cancer spreading to Roger's bones.  WHAT???  I hadn't even thought of that.  You've got to be kidding.  It can't possibly have spread again.  No no no no no.  I hate cancer.  Completely hate it.

Would that we all could share random acts of kindness with a stranger.  If the moment strikes you, pass it forward when you have an opportunity.  xxooxx, a & r