R is like a breath of fresh air to the HH.  The volunteers enjoy him conversing with them while they make his breakfast in the kitchen.  He is the only patient I've seen out and about since we've been there except for one other lady.  Sometimes the nurses have to track him down to give him his meds.  He calls the HH the halfway house.  And for him - we are looking at it in that manner.  He had to go there to get a bigger handle on the pain and then we can bring him home. He has kept a great sense of humor while at the HH. We are looking at possibly Thursday for bringing him home.  Thursday works for me to get the "unknown" storm behind us at that point. 

He got to have some time with 2 of his sisters today.  They enjoyed one of his favorite meals.  His other visitors brought a cherry pie - last I knew there was still 3 pieces left - unless the nurses got to it and my guess is - they did after I left - and that's great - have at it.  Still tweeking the medication today - it's working so that's wonderful.  His day was pretty much like the last few have been.  However - he hasn't told me he's ready to come home yet.  He has to get to that point where he's comfortable coming home.  

I'm not sure what God is trying to tell me --- last week I had an evening where I was just beat and had 4 things happen to me on my way home......  Tonight - I made one stop in the snow for something he needed from Walgreens.....and came out - turned onto the highway and the Low Brake Fluid Light came on and dinged all the way home!!!!! I was so afraid I wouldn't have brakes......but I made it home. The dinger stopped when I reached the corner of my road.  So add the annoying ding and stress of driving on the snow once again.......  I was just about nuts by the time I got home.  So I take a deep breath - hot bath - put it all on hold until tomorrow attitude.....and I'm ending the day.     

My thanks to all of you offering to help do whatever.......it's very much appreciated and I am getting much better at letting people do things for me.  I came across a quote today that I need to take to heart..........  "You alone can do it, but you cannot do it alone"  by O. Hobart Mowrer

Just when we see a window of opportunity to bring him home....... the weather decides to prove it's Winter In Indiana and apparently to let us know that we can possibly see more snow than we've seen in awhile.  The prediction is 18-20 in.  I don't know about you - but I'm not at all humored by the forecast. 

R had a little bit of a rough day today.  He was having some pain in his lower back once again.  I'm hoping that we just need to up the medicine once again as opposed to him having the pain.  The plan over the weekend was to bring up the oral pain med and take down the pain pump going into the stomach muscles.  So either that meds are not working doing it that way or the pain is becoming known to him once again.  I hope it is the former because that is a relatively easy fix.  We don't want to the pain to return.  The other thing is - he may be over doing it a bit and that could cause some pain. 

My sister in law from Florida came for a visit.  I'm glad she getting to see him in his better days.  We took several walks today.  Sat in the sunroom a couple of times and watched the birds. The sun was actually shining today so it was toasty warm and beautiful out there.

Pray for homecoming sometime this week!!  Pray for the pain to not rear it's ugly head again!!!  Pray for the weather to be diverted somewhere besides here!!!  Pray for a good start up to the week for all of us.

Romans 12:12

Not much new to report today.  He felt pretty good - ate in the sunroom twice today with family that visited.  That was nice to get out of the room to eat and visit. It is nice to see him able to actuallly set in a chair for a bit.  He's getting around pretty well.  Manages a cup of tea or coffee and still walks with his walker....  didn't think until today that I should rig up a cup holder.  :)  

He won't let himself rest (as in close the eyes and sleep) much during the day and I know he was tired tonight when I left.  He has had some decent nights there - not quite as noisy as the hospital but still a little noisy because his room is close to the nurses station.

He wants me to bake cookies tomorrow.  The volunteers bake during the week and everyone gets to eat them.  It appears the volunteers don't come on Saturday and I doubt they will come on Sunday.  So I will probably end up in the kitchen baking which is fine.  

Thankful for another good day. 

Passing on a little Quote I came across a few days ago...
"The more you lose yourself in something bigger than yourself, the more energy you will have."
by Norman Vincent Peale

Romans 15:13

    

Another week come and gone.  It's amazing how fast the days go considering they are long for me - but decent for R.  Long in the sense that I leave home pretty early and get home pretty late.  He just seems to have a wonderful tolerance for his days.  Today he wasn't quite as peppy as the previous couple of days.  He still got up today and walked several walks. He had his tea in the sunroom this morning and we sat down there this afternoon when I got there.  His appetite is good.  He has the volunteers making him pretty much whatever he wants.  He is still very chatty with anyone that will listen.    He learned today they are going to dial in his medication to make one of the pain pumps he has into an oral medication so he can lose the pain pump that is going into his stomach.  In doing that over the weekend - we are looking at possibly bringing him home on Tuesday or Wednesday.  That would be wonderful!!!  Pray hard on that one!!!  It would be good for all of us. 

The leaders from our church came tonight and laid hands on R and annointed him with oil and prayed for healing.  It was quite moving for both of us.  It meant alot to us to have you there.  We are blessed beyond the wildest imagination.

Pray for a good weekend.  Pray that we are able to look at bringing him home in the near future.  Pray that the pain stays under control.  And as always - pray for that miracle......

I leave you with this thought that I received in an email today:  "God never told us the way would be easy.  He just tells us it will be worth it".  Amen

Another good day.......  I can't tell you all how good it is to see him smile and talk and get around quite well. The pain is being managed and tweeked a little tonight to possibly simplify the way it's being managed. We have an awesome Dr. at the HH.  R was teasing the evening nurse tonight and she looked at me and said they never had anyone come to HH to get better.  They love having an energetic patient around.  He is getting better and stronger. He's just an all together different person when the pain is pushed back. 

We don't know how long the pain will be lurking in the background before it strikes again - but we'll take each day we can get that is relatively pain free.   Pray for him to continue to gain strength and get him back home.  We all would love to be able to have him here.  Once again we thank everyone for your love, support, encouragement, food, cards, messages, phone calls..PRAYERS... the list could go on forever.  One more thing..... I believe I have yet another god send that has been doing my snow and I thank you so very much.  I came home in yet another snow storm tonight and my drive was shoveled off.  I was very grateful!!  I am very grateful for everyone God puts in my path.   Know you are blessed.

First full day of HH went well for R.  I went out and checked on him around noon and stayed for a bit and then returned after work.  He was doing fine.  His spirits are up.  His appetite is good. He has been getting himself up and walking.  They have a ton of volunteers there and they do a multitude of little jobs from baking cookies to setting and talking with you, cooking, and all sorts of stuff.  There was a group that came in with therapy dogs.  Tomorrow is "The Healer" - if you wish for him to work with you - he has a non touch pain mgt/stress/therapy where he shows you how you use your energy to help you feel better.  More about that later after I hear how it went. 

We met the Dr. tonight and he had actually set on the "tumor board" (guess the dr's love a challenge such as this) and discussed R's case long before he met him.  He's got some ideas on pain mgt. to simplify what we are doing now.  For starters today they removed his IV in his arm and he now has this little thin needle that goes into his stomach muscles with the medication that was in his IV.  So he has a tiny tube coming from that on one side and the epi cath tube on the other side so he has to make sure he's got it all in order when he gets up to move.  The goal is to possibly substitute another medication and get rid of that all together and that would be wonderful.  He will continue to see the Dr. 3-4 times a week in the HH.  We both liked him and he's straight forward with answers and information. 

The ulitmate goal is to get him home and that could happen soon if he keeps doing what he's doing now. If we go home - the visiting nurse service comes to us and does the same thing they are doing there.  Pray for strength for all of us.  Pray that his "good day" streak continues for many days to come. Continue to pray for a miracle.  Again, we are blessed to have you all.  Thank you for your continued support for each one of us.
He is at this point accepting visitors.  I'll warn you - he'll talk your leg off.  He's very sociable right now which is awesome to see.  He may even take you on a tour of the home or walk you to the sunroom for coffee.  The HH encourages us to use the home as we would our own.  If you are lucky you just might get a cookie fresh out of the oven.    The grandkids would love that!    Good night all - I need to end this day.

27 /1

We wrapped up Day 27 around noon today and began Day 1 shortly thereafter. 

The hospital had him all ready to roll when the ambulance got there to move him to the Hospice Home. (HH) He was nervous of the ride but it went well and no pain flare ups.  Our favorite nurses were sad to see us go.  We'll miss them - but we are ready to move on. 

The HH is very nice.  It will give you a comfortable feeling when you enter.  It's decorated like a home. A huge sunroom,  alot of wood trim, wood floors, big rooms all done tastefully.  It has a huge kitchen that I can cook whatever, whenever and a nice dining area, big living area, computer area, tv room.  It's got it all.
He took a walk tonight and got the tour.  The staff is awesome and caring.

He was feeling pretty decent again today.  The epi cath is working very well......we have the medicine dialed in just right at this time.  If he continues to feel like he has - we will probably be able to bring him home and then the Visiting Nurses will come to us.   I'd really like him to be able to set in a chair before we attempt that.  Not sure on a time frame for that - we are playing it by ear.  Pray for that to be part of the plan. 

Pray for a decent night tonight for him in his new digs.  I'm sure it will be very quiet compared to what he's used to for the last month.  Pray for the good days to outnumber the bad days.  Good night all...

 

Day 26 @ LH

With any luck today may be the last full day of the count at LH.  He had a decent day today which makes a couple in a row.  He had an appetite and took a couple of walks and watched his favorite FOX News channel the entire time I was there from 1:30 to 8.  If he is doing ok tomorrow - we may be moving to another facility which I will tell you about tomorrow if it happens.  I don't want to jinx anything.  Just pray hard that he keeps feeling decent and can endure the ride comfortably.  

 On my ride home in the evenings I have time to reflect on my day and tonight I was thinking about how easy it is to feel good about things when he looks more like himself and he's made some improvements.  I will admit that when he has a couple of good days it makes you forget what you are really there for.  I have been able to sleep reallly well at night but in the mornings it slaps you square in the face and you know that for a short time you got to be carefree and not have to worry about what we you will endure during the next set of waking hours.   I'm grateful for the good rest to be able to face all the tomorrow's that we are given. 

Pray hard!! Pray often!!  We are all so grateful that we have so many on this journey with us.  We count on all of you daily.  Thank you!!! 

 

Decent Day

I'm not sure what happened today..... but I'll gladly embrace the day that we had.  I walked into the room today to find him very alert - setting up in bed eating a good breakfast.  I was shocked after the day he had on Saturday.  After breakfast we watched a movie - he stayed awake through that.  He then got up and got around - stood at the sink which is a first for a few days here.  Then he wanted to go for a walk. I was a little leary of the walk because the eip cath does tend to make him a little bit numb in his lower back and I wasn't sure what that does to your legs.  Following his walk he was done for.  We had some good conversations today.  He watched two football games.  Ate good all day.  Only closed his eyes a time or two for 3 or 4 minutes.  He should sleep well tonight.

Pray that this isn't the calm before the storm.  Pray that this new week will bring some positive signs of improvement. It would be great for him to have a bunch of days like today's. I think he could actually be home if they were all like today.   Pray for strength for all of us as we endure the unknown.  I know it's not up to us to know what the ultimate plan is for him.  A postcard we received said:  "God has not only read your story,  He Wrote It."    How very true........ 

Sleepy Day

R did exactly what I wanted to do on a day like this - sleep it away - one doesn't have to deal with the cold - the cloudy sky or the snow.......

He was sick this morning before I got there.  I'm guessing it was from Radiation yesterday. He did this one day last week and the next day was better.  So we'll see what tomorrow brings.  I got him washed up this morning and he must of liked the clean gown - clean sheets because he literally slept the entire day away.

He knew both the kids and all the grandkids were there briefly - but that was pretty much it.  He ask me tonight before I came home if I'd been there all day - I said yes... 12 hours to be exact.  He looked at me and wanted to know what I did all day.  I rattled off a few things I accomplished..... And at that point I said now i'm going home to get some sleep.

I felt like his pain was better today since he was able to rest.  I felt like his body needed the rest. The daily goal is to keep the pain under control so we can move on to the next phase of our journey.  I'll keep you posted on that.

Now I need to end my day.  Hanging out with sleepy people all day tends to rub off on me. 

Day 23 @ LH

I was encouraged when I talked to R this morning that the epidural cath had helped somewhat.  However by the time I got there this afternoon - he had just returned from his last radiation treatment and he was in some pretty good pain again and very tired.  His treatment went ok and it was his last one - but he had some pain prior to that and it just doesn't quit.   My parents and I left him to rest and we put together an entire 500 piece puzzle in the lounge while he slept.

He was able to set up on the side of the bed to eat a little bit of his dinner and that didn't last long - he had had it.  I left him in a somewhat comfortable position with 3 pillows behind him and 5 under his head all positioned just right.  The IV nurses are the ones who now administer the medication through his epi cath and they were called in to tweek the medicine to make it a bit stronger tonight.  So I know he's miserable.
My brother named the cancer "A Monster" tonight.  And it truely is. It's hard to understand the pain and suffering one must endure.  It's even harder to be on this side watching daily.

For anyone planning on visiting - he is requesting that he get to feeling better before you come out.  He told me to tell everyone that.  So I did what he ask. 

Keep the prayers coming..... they are needed and appreciated.  THANK YOU.

Day 22 @ LH

He spent the day in a great deal of pain again.  He had a CT scan yesterday to make sure that the cancer had not spread into the brain and it had not.  But in doing the CT scan he endured a great deal of pain yesterday when they moved him carelessly.  Long story short that scenerio is getting handled and we move on. 

At 4:00 this evening they took him down to surgery to insert an epidural catheter into the area where he has the greatest pain.  I won't know until morning if he is getting any relief from it because he has been sleeping pretty much since he came back upstairs from surgery.  He looked comfortable and not so strained. I told him I was going home - but he probably doesn't even remember.   He has a little tiny tube that comes out of his back where all the pain is and he'll carry around the bag of meds when he goes anywhere.  The epidural has two different strong pain meds in it and if it's not enough medicine they can add a third to it as well to help relieve the pain.  Dr. thought it went well.  His wonderful nurses are checking on him every 15 minutes or so to make sure he's doing ok.  He's getting a tremendous amount of pain medicine so I'm thankful they are on their game there.  

He had a surprise that made him smile tonight when a couple of his classmates from High School made a visit.  He was cracking some jokes with them - so I know he wasn't feeling too much pain at that point.

Pray that the procedure gives him the relief that he needs. Pray for a good night for him and a turn around for tomorrow. Pray that we all continue to receive the strength when we need it most.  I'm always glad for Friday's coming around.  It means that for 2 days after that I can get off my game just a little.  Thank you all for the cards - notes - FB comments - messages - We continue to be very blessed.  Thank you so much. 
  

As you may know by now - we didn't come home today.  And there is nothing in sight for the homecoming.
The pain is significant and partly due to another incident that happened today.  Maybe you'll get to hear about it tomorrow.  They say you should always take time to calm down before you let it all out. 

Pray for relief from the intense pain.
Pray for the nausea to subside which is more than likely from the radiation.  
Pray for a comfortable night.
Pray for a better day tomorrow.  
Pray for the wonderful nurses he's blessed with daily.

Day 20 - not one we want to remember.  He had a rough night last night and a rough day today.  We need to PRAY HARD that the radiation treatments will be his saving grace.  It seemed like the pain was intensified today more than normal. When the pain gets worse - they give him more pain meds......one of them makes him hallucinate...and makes him nauseous..one of them makes him sweat like crazy for about 20 minutes after administering......and one of them does nothing but make him sleepy when given in the higer dosage.  We talked tonight about the plan for what works for him with the ones we have tried.  Still trying to get the right combination and it's very frustrating for him and me.  So we have a plan for tonight and tomorrow.  I hope it works - it did last week so I hope like crazy it works again.

With the bad night and day he says he is not coming home tomorrow as we had orginally thought might happen.  I am asking each of you to pray like crazy for him to be relieved of some of the horrible pain that has returned once again.  None of us can truely know how bad it can be.  I see it in his eyes.  I hear it. And I can't do anything but be there for him and that hurts.  He has his last treatment tomorrow.  They give the treatments a week and then proceed to Plan B.

We ask for your prayers specifically for relief for the pain.  He can't come home until he's better.

19 down.....   I orginally thought we wouldn't go into the double digits and then I looked ahead and thought we wouldn't make it to 20....but who would of thought.  It looks like if everything stays on track - he will be coming home on Wednesday.  He got his sutures out today from surgery.  The wound team says his incision is  looking very good now.  (Praise).  2 more treatments to go!  (Double Praise). 

Personally I think they are still guessing at the right combination of pain meds.  He slept alot yesterday and again today.  I left work at 2 and went to the hospital and I think he slept almost the entire time I was there tonight.  He did manage to visit with friends off and on. He slept though his lunch so I made sure he got some dinner in him.   He went on a walk and he was very tired when we got back from a short jaunt.  I left a little early so he could go back to sleep.

Thank you to my wonderful parents!  My crafty dad built a new step in the garage that's wider and will make it easier for R to get into the house.  It looks great - but twice tonight I've tripped because I am used to the old one and this one catches you by surprise.  I had to put a note on the inside of the door to remind myself to watch my step. It's amazing what you do by habit and not even give a second thought to.  I't's past time to end this day.  Thank you for all our amazing followers.  Our family appreciates each and everyone of you.

Don't count the days....make the days count! 

Day 18 -done...of being at the hospital.  I just realized the last several blogs didn't even get a title.  I get anxious this time of night to just get to bed.  R's day wasn't horrible....but it wasn't the greatest.  They upped one of his pain meds again to work a little better with the #2 med trying to get us out of there this week.  I have to watch when I change the patch later this week to see if that's what makes him so sleepy.  If so, it's just the first day.... his body has to adjust itself and then he's more awake after that. 

Another one of "Our Girls" - the last of the three that we claim as wanna be daughters- made it to visit today.  So good to see her.  I needed her big ol bear hug!!!  Thanks D!!! 

All in all it was a decent day.  I think we are all more than ready for some new scenery.  I have some preparations to do for his homecoming.  Our house will be transformed into a more "patient friendly" place. We are looking forward to Radiation concluding this week.  Our case manager has been working with our Oncology dr. to see where we go from here. The talk is already out there for visiting a facility that specializes in this kind of cancer.   They have a couple of ideas - but I have also discovered a couple of places to run past them both.   

Pray that the pain will begin to subside following the full dose of the radiation and it should (so they tell me).  Pray that our transition home is a good one this week.  Pray for R to gain some strength in these upcoming days. 

We've wrapped up Day 17 in the hospital.  I think we may be making some headway ---finally.  He lost his friend name "Nusance" today.  That being the IV pole that had to go everywhere he went.  We are getting dialed in on possibly the right combination of pain meds and the talk is pretty good about getting us out of there first part of next week.  He has the three radiation treatments - so it's a day by day thing.  But there is an itsy bitsy light shining at the end of the tunnel now.

We had 4 surprise visitors!  It was awesome to see you all!!!  B & L and K & M!  We were able to have a great visit with everyone. Even though he fell alseep during our daughter & fam visit as well as his brothers visit.  He got in a couple of good walks today.  A nurse told us about "the loop" on that floor so he did it twice today.  He was running a slight fever right before I came home - I hope that isn't anything.

R got a card from one of his high school classmates all the way from Texas.  He was really surprised. And if you are reading the blog - D - he is going to send you a note back.  We are amazed at how fast the news traveled and how far away we have people praying, thinking of us and encouraging us all the time.  It's a great feeling.  We are very blessed.  To those of you who send an email of encouragement or a note on facebook -or the comments on the blog -  I do get them - I do read them - I pass them along to R -I just don't take the time to answer each of you and I know you understand.  Our family feels very fortunate to have so many friends supporting us. Thank you!!  Thank you!!!  Thank you!!!! 



  

Day 16 at the hospital ---done......   We are both about crazy with all the medication changes.  We are hoping that our Oncology dr. is on rounds tomorrow so we can get some things straightened out and clear in our minds.  Just when you get it straight - another change. 

Positive things for today:  **He got weaned off the pain pump- so now he's on 2 pain meds - and not three unless the pain gets out of control they will go back to three ** he's got three more radiation treatments to go and he'll have a full dose in him which he needs to help with the pain** they are talking more about letting him go home**He feels like being a little more mobile**

Thanking God for the improvements and reaching some goals.  Now if we can just keep them coming.  Grateful that another week is behind us - looking ahead and setting higher goals. 

Be joyful in hope, patient in affliction, faithful in prayer.  Romans 12:12

Day 15 wasn't the best today.  His appointment didn't get changed down in Radiation Therapy from 8:30 a.m. to 1:00 p.m. - and the transport team showed up to get him down there and he had basically just woke up and ordered breakfast and away he went.  The downside of that - he didn't have a chance to have his pain meds before they took him.  So he had a set back from that today. Once you get behind - it takes awhile to get back to where he should be and to be honest I don't think he ever got back on track.  When I arrived this afternoon - I had to jump start him to attempt to make the rest of his day better.  I managed to get him in the chair for about 15 minutes today - which is a first in the last 3 weeks.  He does ok setting on the edge of the bed.  He took 2 different walks and he was probably glad to see me go tonight.  I'm not pushy - just a strong encouraging nudge now and then. 

R got a Prayer Bear from my BF - BJC - He loved it and it is adorable!!!  I have him propped on the shelf looking at R to remind him that everyone is praying!  Thanks B & B.  You two are the best!!  He also had three special visitors he told me about today when I arrived.  Little M. made him smile.  Thanks T & B.  You were a bright spot in his day.

According to the rounding Dr. today - R was told he will probably be there through Tuesday and they will evaluate him following radiation treatment.  That should be his last one.  Rad. Onco. Dr. stated he has to have a full dose before he will notice any relief from the pain. I would like to start the countdown - however I will never assume anything ever again. 

This week has flown by - even though my days are long - I have a routine down pat and it's working.  Please continue to pray for all of us.  It means so much! 

When he starts feeling good enough to sleep like a baby through the night - it's time to get home!  Last night was one of those nights.  He said he fell asleep around 10 watching tv and woke up at 5:00 with the tv still on and trying to figure out where he was.  I'd say that helped contribute to a not so bad day for him today.  He felt better - looked better. Got himself up to brush his teeth and get around this morning.  He wants me to bring his aftershave tomorrow.  That's a big deal. 

I worked a little longer today - wanting him to get done with his radiation treatment before I showed up.  And he did just fine both with the treatment as well as going with the transport team.  We'll see what tomorrow brings - if I dare do that again. 

Physical therapy worked with him following radiation and they say he's doing great.  The nutritionist came to visit and offered some ideas.  It appears that they did a routine blood test yesterday and it came back with his protein level pretty low.  Turns out - it was one of the new medications that can fowl up that test.  It was redone tonight to hopefully reflect a more true result. 

Tonight we had a surprise visit from "our girls".  I call them our girls because they are like daughters to us.  They along with their beautiful family drove a little distance to see us.  It was great to see them.  Sad to see them go.  We love you guys!!!   We cherish the time we have with all of our friends and family.  We cherish the visits and the prayers that are said for both of us.  May the upcoming days continue to be on the positive side.   

I have been working 1/2 days for which I am grateful.  #1 - it's a good diversion for me  #2 - It allows R to do a few things for himself.  I do tend to do more than I should for him.  The snow allowed me to get to the hospital by 1:00 today for his Radiation Treatment. J.S. - thanks for the visit while he had his treatment.  I'm glad you got to see some of your friends while you were there.

More micrograms were added to the "patch" today in more of a futile attempt to get him off the pain pump. We'll see what happens.  They are getting concerned about his weight loss.  I guess they do that when it gets to be day 14 and you are still a patient.  I am concerned about it as well.  They are going to send a nutritionist tomorrow to see him and probably force the protein shakes in him.  There is a little talk of him going home - but nothing solid.  He's not ready.  He said today he didn't think he would have the strength to get to Radiation if he went home.  He is on the weak side.  (understandably so)

I tucked R into his little room and I left early since I knew it would take me awhile to get home. I'm very grateful for my savior that helps with my snow in the drive.  I smiled when I drove down to the house and it was all ready for me to drive on in.  THANK YOU!!!  I'm thankful that my drive home was just o.k.  The roads were horrible.  We were all being cautious and driving 35-40 on the interstate.  Big sigh when I got home.  

We begin day 14 tomorrow of being in the hospital.  Pray that some major improvements happen soon.  I am more than ready to get him home.     

 

R had an eventful day today.  There are still issues with his incision - The Wound Dr. was called in to look at it who is also a plastic surgeon. He didn't think it was too bad.  The nurse relayed to me that if it doesn't completely close up on it's own they may have to skin graft.  That poor guy doesn't need anything else.   We both feel they started Radiation way too soon after surgery which is why we are having issues still today.  They are trying a new cream and bandage process and hopefully that will make it better.  It doesn't help that tomorrow starts his 13th day of laying in a hospital bed on his back. So we decided that it might be a good idea to start setting on the edge of the bed to eat and maybe a couple of other times during the day. 

Radiation was approved to start back up today.  What we didn't realize is that they had to re-map him again today - so it was another 1.5 hours down in Oncology Radiation.  So needless to say - his pain flaired up again with the way he had to lay to get the markings done and then his treatment.  Tomorrow should be better for him - the treatment only takes about 5 minutes once you are in there. 

He was getting a new IV in one arm - getting his vitals taken in another arm and the nurse was changing his dressing on his back when I left tonight.  I figured that was my time to run and get home a bit earlier than normal.    No talk of a release date but that's ok.  The stuff he is on - requires an o.k. from God to be able to administer it. 

I pray that the snow misses my path tomorrow.  I pray for a good night for R tonight since he's hurting again.
I pray for the Radiation to be effective.  I pray for all of you praying for all of us. 

Whew... Just finished the 11th day in the hospital.  I shouldn't of bragged about the good day yesterday because he was very tired all day today.  He slept alot.  Not sure what is causing that.  Could be a combination of the new pain med seeping into the body or just that fact that Saturday was a busy day and he felt better and overdid.  His first walk of the day was pretty good.  Tonight's walk was quite sluggish and didn't last long.  His appetite has been improving a little more each day and that's very important because if those hospital scales are correct we need to beef him up a bit. 

Tomorrow morning his Neurosurgeon will look at his incision and make the decision on treatment starting back up tomorrow.  If he gets a treatment - pray that it's a good experience for him since everyone is on board with the way he can be moved etc...  I've got a feeling I am going to learn alot this next week on other changes that will become a new way of life when he gets home. 

I need to get to bed!  I am very tired tonight!  Sleep always makes it easier to face tomorrow.  Prayer warriors - keep it up!!  WE NEED YOU! 

Today was one of the better days R has had.  His spirits were up.  He actually even cracked a few jokes with some friends.  It almost makes you forget what you are really dealing with and let your guard down.  He is now on a regular diet so he has some different menu choices for a change.  He still gets pretty tired.  They put the stronger pain patch on this morning so it can begin it's transition period tonight.  We are hoping he gets to go back to Radiation on Monday. We are getting so far behind on that......but we need to get that incision healed up first.

I actually left really early tonight to attend my company holiday party.  It felt good to do something normal for a change.  It was easier for me to go since he was having a good day.  Pray for the good days to continue.  Pray that we are able to spring him out of there this coming week and the transition to be a good one.  Pray for the new pain med to be tolerated and actually work it's magic on him.  Your love, prayers and encouragement are most appreciated.   

You know you've been hanging around the hospital much to long when you begin to know what specials are on what day in the cafeteria.  Friday's are always Mushroom Swiss Burgers and they are pretty good - but 3 fridays in a row is enough!! 

Our son came up today with our youngest grandaughter.  She was a nice diversion for me.  I stole her away for some grandma time and we ran a few errands and she went to work with me for a bit. Our son spent some time with his dad alone.  Worked out perfectly.  Loved seeing them both.  

Blessings to my wonderful hair dresser. She came all the way out to the hospital today to give R a haircut.  He needed it badly and I know it had to feel so much better and he said it felt great.  Thank you so much!!!  You are the greatest.

I would say he had a tolerable day.  He was tired today.  Not sure if that stems from being in the hospital for 8 days in a row today or what. I left a little early tonight because I am tired as well.   Nothing changed today with the pain meds - but tomorrow the patch grows again into a larger dose.  Dr. is hoping to get him off the IV meds.  It would be nice to have the patch be able to maintain the pain.  He's in for several more days.  Everytime they change meds - its a process.  The patch takes 12 hours to be effective and then to wean him down from the 2nd pain med takes even longer than that.  His incision continues to heal and hopefully nothing more will develop from that.  There is slight infection there at the incision site.  They are treating it 3 times a day.  We both think - they started radiation way too soon following surgery.  So it's a good thing we are holding off until at least Monday for his next treatment.

I am sharing the lyrics of the song "No Matter What" by Kerri Roberts
     I’m running back to your promises one more time, Lord that’s all I can hold on to, I gotta say this has taken me by surprise, but nothing surprises you. Before a heartache can ever touch my life, it has to go through Your hands, and even though I keep asking why, I keep asking why,

No matter what, I’m gonna love You, no matter what I’m gonna need You, I know You can find a way to keep me from the pain but if not, I’ll trust you, no matter what, no matter what.

When I’m stuck and there’s nothing else by myself, I’m just sitting in silence, there’s no way I can make it without Your help, I wont even try it. I know You have Your reasons for everything, so I will keep believing, whatever I might be feeling, God you are my hope, and you will be my strength,

No matter what, I’m gonna love You, no matter what I’m gonna need You, I know You can find a way to keep me from the pain but if not, I’ll trust you, no matter what, no matter what.

Anything I don’t have You can give it to me, but it’s ok if You don’t, I’m not here for those things, the touch of Your love is enough on its own, no matter what I still love You and I’m gona need You

No matter what I’m gonna love you, no matter what I’m gonna need you, I know You can find a way to keep me from the pain but if not , I’ll trust You, no matter what, no matter what. I know You can find a way to keep me from the pain, but if not, I’ll trust you, no matter what no matter what no matter no matter what

Where has the week gone?  I have to keep track of things going on in his room because the days just blurr together.  He has so many meds he can't keep them straight.  I am ready to make a poster for the wall listing all of them and what they are for.  He had a rather uneventful day today.  His spirits were good. He ate pretty good for what he eats these days.   His walking was pretty speedy.  But the pain remains constant.  He was pretty tired tonight when I left him.  Hopefully he can get some good rest for a change.  The conversations we are having are amazing.  The strength God gives me to talk freely about what the future could hold is beyond belief.  To those of you praying for strength for me - it shows!  I'm strong when I need to be. 

His neuro surgeon suspended Radiation treatments until Monday so he has a chance to heal the incision completely.  My guess is - his residence will not change until after his treatment on Monday so they can monitor his pain while he gets his treatment and after.  Oncology dr. is in no hurry to let him go....and he hasn't even said he wants to go home - so you know he's not ready.  I'm more than ready to have him back here but it is scary trying to think ahead about what we have to do to prepare for that.  We have a wonderful case manager who checks in with me daily.  She's an Oncology nurse so she's fully aware of what we are dealing with in all aspects.  She's my go to person for everything that I need an answer for. 

The mailman must be wondering what is going on at our house...... he brings stacks of letters and cards - I take them daily to R to open - gives him something different to do.  I'm sure the "other stack" of not so fun stuff will follow soon like hospital & doctor bills.  Right now - they will just go in the "I'll open someday" pile.
Your efforts are very much appreciated.  Everything everyone does or says is very much appreciated.
May you all be blessed beyond measure.

My day started with a call from R - they moved him to the Oncology floor at 11:00 p.m. last night.  Why do they do that?  Since December 21st - we have had a total of 6 rooms now.  The surgeon suspended Radiation today and possibly tomorrow due to his incision taking a little longer to heal than anticipated.  So before something drastic happens - he wants to go the safe route.  We are all about not adding anothe issue on top of everything else.

His day was tolerable today.  They did have to increase his pain med again - he is just having a time of it with the pain.  Physical Therapy did a number on him this morning as well. They seem to not comprehend each case is differnt and not everybody can move in the same manner.  He does get up and walk decently a couple of times a day just to keep moving and his appetite is improving a little.  He's on a transitional diet which is soft stuff, liquids, soups, some fruits, frozen yogurt, etc..... 

He was really tired tonight - he didn't sleep much during the day today.  I managed to work almost 1/2 day today and then spent the rest of the day with him.  It seems I lock up the door at the hospital when I leave every night.  My pillow is calling me and I am especially tired tonight as well.  From the bottom of my heart - thank you to everyone who continues to pray and encourage and support our entire family. 

A Better Day

Today was an improvement from yesterday.  First they were going to hold off on R's radiation treatment and let the pain mgt. get more in place and then the Oncology Radiation dr. came up and talked to R since the experience was so so so bad yesterday - he had a new plan - however - the new plan involved re-mapping of the front and laying on his back.  We scheduled the "bolus" (boost of pain med) to be given when we were on the way out the door to the treatment - but when we got down there - we had to wait and our wonderful nurse actually came down to the Cancer center and administed a second dose just to keep him comfortable so we didn't have any mishaps like yesterday - so it all happened today and it was thankfully uneventful.  We were both quite relieved when he finally made it back upstairs and in his bed. 

We didn't get moved today because the Oncology floor is full at the moment.  We are ok with that because our wonderful nurse is back on duty again tomorrow.  I tell her if we ever get to go home - she's going with us. 

He's been out of bed doing some walking - and he does pretty good. He's a little slow getting up and down but he can do it.  All in his time.  If the pain would just ease up - we might be able to explore some options of bringing him home.  Thankful tonight for a better day.  Thankful that he did get a treatment.  Thankful for all of you who are out there for all of us. 

Definately a Monday.  It was a very trying day today for both of us. I could sense a load of discouragement weighing heavy on him when I arrived this morning.  As the morning went on - he seemed to loosen up a little and the pain was once again becoming tolerable.  The pain had not left him - the sharp edge of it was getting much better than what it had been.  Then it came time for him to be transported through the hospital to his Radiation treatment in the same building.  The team that came to get him - do his treatment - and return him - left him in the worst shape he has been in yet.  He can only move a certain way - and they had deaf ears to the way that they should help him get to where he needed to be.  I figured he was in good hands - so I left to catch up on a few things at work while he did that.  When I returned to find him in great pain - I was really mad!!!  He felt like they had almost broken him in half.   

He says he is now set back by 5-6 days of what he had accomplished with pain mgt.  I was furious!!!  When I left tonight - he has refused his radiation treatment for the morning.  Our oncology dr. will be handling his entire case from here on out.  We fired the Neuro guy who neither one of us have ever been impressed with.  I think he does the rounds because the team keeps him out of the office and away from them.  (We aren't talking about the same Dr. that did R's surgery)  We may be moved to the Oncology floor tomorrow since dr. will be handling our needs from now on.  I will miss our nurses we've had on this floor. They have been awesome! 

Pray for peace for R.  Pray for him to get some rest tonight.  Pray for relief of the gripping pain that will not let go.  God Bless you all.  You are amazing and loved by us all!!!  Thank you! 

A little bit of good

This morning started off pretty rough again - he had multiple sessions of really sharp pain.  So as I write this tonight at 10:00 he is in the process of changing over to another pain medication using a patch that we will change every 3 days along with a pump he can give himself an injection of a boost of pain med when needed.  For those of you who are unaware - he had a condition called ilius - which is a major problem with the bowel and it stems from messing inside the spinal cord when they did the biopsy.  The bladder and bowel go to sleep so to speak and it takes a while for them to function again properly.   Answered prayer today for him - little steps in getting towards things working again.  I could just see the tension drain from his face over this ordeal.  He had some times today when he was doing better which was a good thing to see. 

Maybe tomorrow he will have a bit more of an appetite as time moves on here.  Pray that the newest pain meds will be more effective.  Pray for the unknown as we adventure into hopefully bringing him home soon.  They still aren't talking about when that might be.  I pray for a peaceful rest for him tonight.   Good night to all and thank you for your prayers and continued support and encouragement.  Everyday I hear from someone else who just needed to get in touch to say they care.  My family appreciates each and everyone of you so much! 

1-1-11

Most people got up today and have all sorts of New Years resolutions they think they are going to get moving on - knock some things off the bucket list......and then there are those of us.......who have difficulty attaining the most simple things.  Right now - I am very concerned for R.  He had a not so bad morning - but the pain spiked again this afternoon.  They had to kick up the meds once again. He couldn't get comfortable - nothing seemed to work.  Then we hear from the rumor mill that they are moving him to another room.  Last week when we were there - he was in three different rooms which is rediculous.  He never got moved tonight until 9:00 p.m.  I felt so bad for him. I'm sure the staff knew I was agitated.  The plan was to get him moved by 7:00 so he had time to get settled down.   I stayed and made sure he was doing ok and got his "blast" of pain med before I left him.  I keep thinking one more day and he's going to have some improvements and so far there haven't been many.  

There is still no talk of when we may be changing our address back to where I manage to sleep for a few hours.      I'll keep you all posted.  We all need your prayers more than ever.