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
Monday, July 30, 2012
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
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
Thursday, July 26, 2012
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
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
Tuesday, July 24, 2012
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
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
Saturday, July 21, 2012
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
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
Thursday, July 19, 2012
Fine tuning
We continue to fine tune Roger's pain meds. I am pretty sure I am on the most wanted (hated) posters of the nurses and doctors here. I continue to challenge what they are doing. Today they wanted to increase both the base line continuous drip dosage and the on-demand dosage of Roger's pain meds. And, they wanted to jump the dosage a large amount. I am pretty sure Roger would have been totally zonked all day from it. He verbalized he did NOT want that and vocalized his preference. Additionally I made the request that the doctor and nurse practitioner explore Roger's viability (right word?) for this epidural kinda thing. Again, I got the long eye like "who are you to make these requests?" The doctor in particular seemed to have a little bit of a snit. Oh well. Too bad. I finally started saying, "look, maybe with some patients around here being comatose is ok but Roger wants to be active and cognizant and aware of what is going on. Yes, he wants the pain controlled as do I but we think we can get there without his eyes being rolled in the back of his head has he is passed out from drugs". You can probably tell I was in a little bit of a snit myself.
We had a parade of medical workers coming in and out. Nurses, nurse practitioner, doctor, floor nurse supervisor, social worker, home discharge liaison, etc etc etc. Literally, a parade. Had lots of good visitors too but the combination of visitors and parade of medical people has left Roger pooped. He is now snoring away merrily across the room from me.
Tomorrow holds more medicine tweaking. We thought maybe we might be going home. Now it sounds like Monday. I'm itching to "break" him out of here. Pretty as the facility may be....I want to get him home. Having said that I know we need to make sure he is comfortable going home both with pain management and his ability to move around. Fortunately he and I are working together to get him out of bed to go to the bathroom, straighten his bed, etc. Kinda acts as a reassurance we can do this ourselves without the need of additional assistance at this point.
I'm hoping his pain is under control enough that we can get him into their hydrotherapy tub here. I think a bath would genuinely help with his achy muscles and bones. A bath has always historically helped make him feel better. So, we'll see.
As usual, I'm signing off. Gotta grab sleep when I can. Last night he slept from 11:00-ish through 4:00 and then fell back asleep until the nurse came in around 5:00 then fell back asleep until 8:00. wow, almost normal sleep.
Take care, a & r
We had a parade of medical workers coming in and out. Nurses, nurse practitioner, doctor, floor nurse supervisor, social worker, home discharge liaison, etc etc etc. Literally, a parade. Had lots of good visitors too but the combination of visitors and parade of medical people has left Roger pooped. He is now snoring away merrily across the room from me.
Tomorrow holds more medicine tweaking. We thought maybe we might be going home. Now it sounds like Monday. I'm itching to "break" him out of here. Pretty as the facility may be....I want to get him home. Having said that I know we need to make sure he is comfortable going home both with pain management and his ability to move around. Fortunately he and I are working together to get him out of bed to go to the bathroom, straighten his bed, etc. Kinda acts as a reassurance we can do this ourselves without the need of additional assistance at this point.
I'm hoping his pain is under control enough that we can get him into their hydrotherapy tub here. I think a bath would genuinely help with his achy muscles and bones. A bath has always historically helped make him feel better. So, we'll see.
As usual, I'm signing off. Gotta grab sleep when I can. Last night he slept from 11:00-ish through 4:00 and then fell back asleep until the nurse came in around 5:00 then fell back asleep until 8:00. wow, almost normal sleep.
Take care, a & r
Wednesday, July 18, 2012
New surroundings
We were transferred from the hospital to the inpatient hospice facility today. The transfer was supposed to happen in the morning. It got rescheduled to 2:00. The ambulance company was backed up and never showed until 3:45. We finally got to the facility and Roger squared away in the room. My blood pressure was up because they didn't hit the time scheduled. In a horribly unpredictable world, I thought the transfer could at least go as suggested. I think we both were on edge because we knew they were going to disconnect Roger from the IV pump of pain medicine to transport him to this facility. They dosed him up with extra pain meds and got him here. We were terrified he would have tremendous pain during the trip.
The room is spacious and beautiful with a lovely view out in room french doors. So, you could breathe a sigh of relief for the room. I was not happy with the staff who received us. They seemed disorganized and simply didn't seem to have a sense of urgency. It completely freaked me out. Naturally, I'm a smidge on edge...but PEOPLE HELLO???? New patient with extreme pain....CHOPPY CHOPPY GET YOUR FREAKIN BUTTS IN GEAR....Ironically when we were getting ready to leave the hospital our day nurse, Marian (who was amazing!) said, "I thought about becoming a hospice nurse but ultimately decided against because I move too quickly and couldn't slow to their pace". I thought the comment odd and that maybe I misheard her. Now, that we are here....hmmmmmmmm. I'm trying desperately to not go postal. We'll see how tomorrow goes.
The pain meds were up'd again today. Roger had a much easier day albeit a day spent sleeping or staring at the TV with a glazed over stare. So, the good news is the pain was abated a little. The bad news is the medicine whacked him out. Thus the continued tweaking. We received a call from a doctor in the family. He suggested another approach that would aggressively help with the pain but would allow Roger to be more conscious and present and living life. Basically it operates under the same principal as an epidural women receive when having a baby. I guess, blocking the pain in this back and lower extremities. Ironically I asked the ER doctor if they had something like that which they could do. She said it could be explored with the inpatient doctor and the pain doctor. Bet you can guess what conversation I will be having tomorrow with the doctor here at this facility and with Roger's oncologist.
We have continued to learn throughout this process, YOU have to be your best healthcare advocate or have someone close to you be your advocate. YOU have to challenge the approach. If things aren't going the way expected then ask for change. The hardest part of it all is trying to know all the information you need to know....or maybe just trusting your gut instincts.
Roger is snoring away in the bed across the room from me. I'm not in a good space today so I'm going to stop now and crawl into the recliner next to his bed and hunker down for what I hope will be a full, uninterrupted nights sleep for Roger and me. G'nite. Lv, a & r
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
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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