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
Wednesday, July 18, 2012
Tuesday, July 17, 2012
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
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
Monday, July 16, 2012
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
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
Sunday, July 15, 2012
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
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).
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).
Tuesday, July 10, 2012
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
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
Thursday, July 5, 2012
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
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
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