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