Finally Friday. 4 radiation treatments down this week (9 total so far). Roger was supposed to have 5 treatments this week. The radiation center called Thursday morning to say the treatment that day was cancelled because the hospital campus was having major technical difficulties. So, next week Roger will have 5 treatments instead of 4 to make up for the lost treatment this week. His scalp is getting pinker and is more tender to the touch. I've noticed he is getting a little spacey and definitely is more tired. And, as alluded to earlier in the week, is moments (or days) of major grumpy. Based on my research that sounds like a possible symptom when you are getting radiation to the brain. And, as you can imagine, the sheer weight of what the treatment is and why you are doing it weighs very heavy. Having said that, Roger's disposition picked up Thurs and Fri.
He seems to have a little more energy. We think it might be the Ritalan. He still tries to catch a nap when he can during the day or evening and is slow waking up in the morning. Nonetheless, he seems to have a bit more energy which has a positive impact on his disposition. The house is a happier place.
Last night was a rough night. We think its because he ended up eating dinner late which did not sit well with him. Around 4:30 he woke up refluxing, disoriented, choking. I jumped up and flew out of bed to his side of the bed to give him the red bucket we keep next to the bed (for these late night/early morning moments). The Ambien leaves Roger a little (lot) out of it...so depending on the hour, he may not even remember waking up choking with the need to vomit. Its an unsettling moment. He couldn't calm his system down and felt the continued need to wretch. So, after about 30 minutes he gave up and went downstairs to sit upright in the recliner. His throat and chest tend to burn quite a bit after these episodes. He said he's felt a little "off" all day ...his theory is its as a result of the rough morning.
I think we're headed south again. Roger is obsessed with getting the boat projects done so that we can put the boat on the market to sell. Despite my repeated instance that we focus on living and having fun and not worry about the million to-dos... he won't have any part of it. He truly is obsessed with this. So, we are headed down to work on the boat Saturday/Sunday.
We're both pooped. Roger has been dozing most of the night. Its time for us to head to bed. g'nite. a
Saturday, March 31, 2012
Tuesday, March 27, 2012
Despite the sun, it was somewhat dark
The sun was shining today. Temps were a little chilly but ok. And despite the sun and the not too cold temps, it was a pretty dark day. Roger was in a dark space. Foul, short-tempered, grumpy, and tired. A dark place. Every attempt I made to engage him was swatted down with hostility. So, it was (and still is) pretty quiet around our house and in our car and in the doctors' offices.
The day was consumed with two doctors' appointments (radiation oncologist and pain-management) and radiation. Batteries of questions from each doctor's nursing staff, brief meetings with the docs and then we were on our way. 4 hours later and we were back home.
Radiation is still the same. No pain per se from the treatment but loads of exhaustion setting in. The radiation oncologist and the pain doc both have suggested Ritalin (spelling?) to increase Roger's energy level during the day. As of late, all he wants to do is sleep. He often sits across from me with eyelids drooping like little kids do when they have missed their naps. Roger actually asked the doctors for something to help increase his energy. So, we're going to give this ADD drug a try.
The radiation oncologist offered Roger the option of skipping Friday's treatment and instead having one extra treatment next week. In other words try to have a long weekend and maybe recoup a little from the treatment. Roger initially said no. We'll see how he feels on Thursday evening/Friday. I think it would be a good idea....but its his decision as it has been all along.
Anyway, I don't have much for you today. It was a bummer day. Here's hoping tomorrow is a lighter, brighter day despite the situation. ~ a
The day was consumed with two doctors' appointments (radiation oncologist and pain-management) and radiation. Batteries of questions from each doctor's nursing staff, brief meetings with the docs and then we were on our way. 4 hours later and we were back home.
Radiation is still the same. No pain per se from the treatment but loads of exhaustion setting in. The radiation oncologist and the pain doc both have suggested Ritalin (spelling?) to increase Roger's energy level during the day. As of late, all he wants to do is sleep. He often sits across from me with eyelids drooping like little kids do when they have missed their naps. Roger actually asked the doctors for something to help increase his energy. So, we're going to give this ADD drug a try.
The radiation oncologist offered Roger the option of skipping Friday's treatment and instead having one extra treatment next week. In other words try to have a long weekend and maybe recoup a little from the treatment. Roger initially said no. We'll see how he feels on Thursday evening/Friday. I think it would be a good idea....but its his decision as it has been all along.
Anyway, I don't have much for you today. It was a bummer day. Here's hoping tomorrow is a lighter, brighter day despite the situation. ~ a
Monday, March 26, 2012
One week down, and starting week number 2 of radiation. The plan is 5 radiation treatments this week and 3-4 next week. The overriding largest side effect has been exhaustion. Roger is tired....a lot. He is slower waking up. Usually naps after having breakfast and then will start waking up late morning. He usually catches a second wind mid-afternoon and then poops out again after dinner. Once the radiation stops, the exhaustion should taper off. It'll be nice to get a little more of Roger back.
His appetite has been decent. Which means for him, eating three small meals and his new favorite food...little ice cream nuggets by Nestle called "Dibs". When we go to the grocery we literally buy 4 bags. He munches through them over the course of 3-4 days. When we go to the River, we have to buy little individual servings at the convenient store. This past weekend we literally spent, over $25 on these little ice cream nuggets (JUST for the weekend). Now, I do have to confess....they are pretty yummy. I'm sure we are screwing up the re-stocking plan for these groceries or convenient stores....because its inevitable that Roger will get tired of this food...and we'll be off in quest of the next, not-good-for-you-but-oh-so-yummy food. Despite eating little bits of ice cream non-stop, Roger's weight is hovering between 138 - 142. Can't seem to get his weight any higher.
He had an energy spurt today which allowed him to feed one of his obsessions....dandelions. I kid you not. He is obsessed with them. So, he spent about 30 - 45 minutes walking around the yard with a garden tool digging out dandelions. Literally. No kidding. And mind you, we still have a patchwork-quilt yard of weeds, violets, dead grass, etc. He just doesn't like them little yellow dandy-lions. He then worked a little on one of the many car-projects. And now....quiet time on the sofa. He would say, "but hey, NO dandelions".
We're trying to work on a couple paper intensive projects: 1) applying for disability benefits, 2) sending receipts to insurance for reimbursement, and 3) taxes. All of which pretty much suck. And they suck on different levels. Applying for disability means we have been literally reliving Roger's health journey all over again. I didn't realize how truly difficult it would be. The application process has taken almost 12 hours and we still aren't done. Its not so much the tedious nature but the emotional nature as I recall each doctor, the dates, the diagnosis and the corresponding heart ache we both felt along the way. Tracking down documentation to support reimbursement by the insurance company sucks because you have to call, usually a couple times, confirm the documentation received (if received) fits the needs of the insurance company, submit them and then track to see if you receive reimbursement. And taxes, well the whole process just sucks.
Our resident ebay expert, Paul will be coming over to help with our on-going ebay sell projects. I'm told we might actually have a sale pending. Wahoo. If nothing else, it will be nice to "check the box" on our list. One thing done.
Tomorrow, radiation and then meeting with the radiation oncologist. We meet with him every week to discuss how Roger is doing. We have a list of questions for him.
So, that's us. The world continues to spin away and we spin with it.
Time to wake my hubby and shuffle him off to bed. g'nite all. a & r
His appetite has been decent. Which means for him, eating three small meals and his new favorite food...little ice cream nuggets by Nestle called "Dibs". When we go to the grocery we literally buy 4 bags. He munches through them over the course of 3-4 days. When we go to the River, we have to buy little individual servings at the convenient store. This past weekend we literally spent, over $25 on these little ice cream nuggets (JUST for the weekend). Now, I do have to confess....they are pretty yummy. I'm sure we are screwing up the re-stocking plan for these groceries or convenient stores....because its inevitable that Roger will get tired of this food...and we'll be off in quest of the next, not-good-for-you-but-oh-so-yummy food. Despite eating little bits of ice cream non-stop, Roger's weight is hovering between 138 - 142. Can't seem to get his weight any higher.
He had an energy spurt today which allowed him to feed one of his obsessions....dandelions. I kid you not. He is obsessed with them. So, he spent about 30 - 45 minutes walking around the yard with a garden tool digging out dandelions. Literally. No kidding. And mind you, we still have a patchwork-quilt yard of weeds, violets, dead grass, etc. He just doesn't like them little yellow dandy-lions. He then worked a little on one of the many car-projects. And now....quiet time on the sofa. He would say, "but hey, NO dandelions".
We're trying to work on a couple paper intensive projects: 1) applying for disability benefits, 2) sending receipts to insurance for reimbursement, and 3) taxes. All of which pretty much suck. And they suck on different levels. Applying for disability means we have been literally reliving Roger's health journey all over again. I didn't realize how truly difficult it would be. The application process has taken almost 12 hours and we still aren't done. Its not so much the tedious nature but the emotional nature as I recall each doctor, the dates, the diagnosis and the corresponding heart ache we both felt along the way. Tracking down documentation to support reimbursement by the insurance company sucks because you have to call, usually a couple times, confirm the documentation received (if received) fits the needs of the insurance company, submit them and then track to see if you receive reimbursement. And taxes, well the whole process just sucks.
Our resident ebay expert, Paul will be coming over to help with our on-going ebay sell projects. I'm told we might actually have a sale pending. Wahoo. If nothing else, it will be nice to "check the box" on our list. One thing done.
Tomorrow, radiation and then meeting with the radiation oncologist. We meet with him every week to discuss how Roger is doing. We have a list of questions for him.
So, that's us. The world continues to spin away and we spin with it.
Time to wake my hubby and shuffle him off to bed. g'nite all. a & r
Sunday, March 25, 2012
Another weekend in southern Indiana
We are back down in Vevay this weekend staying at my parents river house. The mechanic for the boat motor arrived Saturday morning. Roger wanted to be here to answer questions and help any way he could. It was a strange phenomena for us because Roger would normally be in the middle of the activity. This time he needed to take more of a sideline approach. Reason #1..this mechanic was the diesel motor expert...roger was the boat expert. And reason #2, Roger just didn't have the physical stamina. He needed to sit down and chill out a couple times. Once we saw the mechanic and his assistant had everything under control, we came back to the river house and Roger took a nap for a couple hours.
We returned late afternoon to see how they had progressed and to get them a hotel room since they planned to stay the nite. Roger was very happy to see how far they had progressed...much further than Roger ever expected. So, it was a nice surprise. We had another pleasant surprise that is reflective of a much slower...and arguably much nicer way of life. We needed to get some lumber for the mechanic to use when he lifted the motor. So we headed out only to realize it was 4:56pm...whats the big deal right? At least that's what I thought. So we drove into Warsaw Ky to the hardware store. Only to find it was closed! 5:00 on a Saturday!?! Yep closed. So we drove around the block to the firehouse to ask where the next closest lowes or homedepot was. The fire chief came up to our car and started with...."first off folks, look at your watch..its 5:00 pm in rural America. Its dinner time" Me, to myself "what? Its not dinner time" Roger patiently let the Chief school us and then circled back to the question. Then to our utter amazement the Chief set about getti ng the hardware store owners home phone number (he called dispatch to get the number), then he called the guy. No answer. Oh well, so where is the next place? Ohhhh no. The chief wasn't going to let us go that easily. Instead, he said, "just wait here. Im going to drive to his house. I will be right back." And so he left. Soon he returned to tell us Darrell the store owner was finishing dinner and would be over shortly. 15 min later...Darell drove up and unlocked his store for us...and sold us 8 pieces of wood!! it was such a nice, genuine good-human moment.
Today we will head over to the boat to check in and then will eventually head back up to Indy later this afternoon. Roger is committed to taking it easy this weekend...no over doing it. So we may also have an afternoon nap in store.
Hope the sun is shining where you are. Love a & r
We returned late afternoon to see how they had progressed and to get them a hotel room since they planned to stay the nite. Roger was very happy to see how far they had progressed...much further than Roger ever expected. So, it was a nice surprise. We had another pleasant surprise that is reflective of a much slower...and arguably much nicer way of life. We needed to get some lumber for the mechanic to use when he lifted the motor. So we headed out only to realize it was 4:56pm...whats the big deal right? At least that's what I thought. So we drove into Warsaw Ky to the hardware store. Only to find it was closed! 5:00 on a Saturday!?! Yep closed. So we drove around the block to the firehouse to ask where the next closest lowes or homedepot was. The fire chief came up to our car and started with...."first off folks, look at your watch..its 5:00 pm in rural America. Its dinner time" Me, to myself "what? Its not dinner time" Roger patiently let the Chief school us and then circled back to the question. Then to our utter amazement the Chief set about getti ng the hardware store owners home phone number (he called dispatch to get the number), then he called the guy. No answer. Oh well, so where is the next place? Ohhhh no. The chief wasn't going to let us go that easily. Instead, he said, "just wait here. Im going to drive to his house. I will be right back." And so he left. Soon he returned to tell us Darrell the store owner was finishing dinner and would be over shortly. 15 min later...Darell drove up and unlocked his store for us...and sold us 8 pieces of wood!! it was such a nice, genuine good-human moment.
Today we will head over to the boat to check in and then will eventually head back up to Indy later this afternoon. Roger is committed to taking it easy this weekend...no over doing it. So we may also have an afternoon nap in store.
Hope the sun is shining where you are. Love a & r
Wednesday, March 21, 2012
Three days down...approximately 10 to go...(ugh)
Today, Roger completed radiation treatment number 3. A "routine" is setting in or at least as much as one can. The actual treatments are much quicker now that the set up is perfected. Literally, now when Roger goes back for treatment, he is gone about 7-10 minutes total. No pain. Yes, discomfort and some odd or perhaps more accurately described as unique reactions. Roger says he can "taste" the radiation AND he sees a blue light (with his eyes shut) when the radiation is being administered. The radiation oncologist said this doesn't happen often. Most people *don't* see or taste anything. There are a few who do but its more the rarity. There is no harm to it but mearly the body's neurological system responding to the radiation.
Roger said his skin is starting to feel sensitive and hot. I've noticed its starting to get a little red. We anticipated this would happen but expected it would be sometime next week. Not this week. He will have to start wearing a hat with a brim all the way around it to protect the skin around his ears and the back of his head. My dad and mom bought him a gorgeous "Indiana Jones" type hat to wear. So, he's covered there...as long as Mr. Stubborn will wear it! Additionally, as of this evening, Roger is feeling fatigued. Now this may be because he was busy with projects and running errands today...but I think its probably the radiation. He is fast a sleep on the sofa across from me and has been snoozing for the past 45 minutes and he hasn't even taken his evening medicine which is what normally knocks him out. So, when he wakes he'll have a slew of medicine to take and then we will eventually shuffle off to bed.
And speaking of medicine, we think we finally have his pain management under control. His fentynal patch dosage has been increased and now he is taking oxycodon instead of hydrocodon which allows him the ability to take it more often. And finally, finally, the first time in years he doesn't feel pain. Obviously it could be the fact the dosage is dialed up. Regardless, we'll take the peace it provides. We have figured out the medicine dance to get him 3-4 hour chunks of sleep, which for him is like the rest of us sleeping for two days straight.
Lest you think the Wethington black-cloud of bad luck has moved on, thought I share our most recent little mishap. When we got home from radiation last night, we each set about doing our own thing. Roger went to the basement to check on something he had been painting. Next thing I know, I hear the sound of the shopvac. I go downstairs to see Roger sucking up the mini-lake which had formed in the basement. Apparently our outside faucet froze sometime this winter. Well, when I watered my plants in the courtyard this past week, I turned on the faucet...and thereby created a lake in the basement. Awesome. Fortunately, this great young guy, Eric, who has worked with Roger for many years was coming over today to help with some of our many projects. Eric has been a godsend for us in helping knock out all the various projects we, or rather Roger has. Well, instead of tackling one of the previously scheduled projects...Eric repaired our indoor lake-builder. Really, can you believe the luck? It wasn't even that cold this winter. Whatthehell?
I meant to share this with you earlier in the week. We had an amusing (well maybe not so amusing) moment when down at my parents' river house last weekend. We were sitting on the back porch watching the river flow by when we heard the "pa-thunk" of a bird hitting the window of the neighbor's house. We both looked and saw a robin dart off and then immediately looked to the ground to see if we could see the dazed other robin. Instead we saw a bird sitting on the ground looking around as if nothing happened...and a bunch of feathers in the surrounding area. Hmmmm. I asked Roger if he thought the bird was just a little confused. He paused for a moment, contemplating the response and replied, "um no. He is perfectly fine. The robin underneath him...isn't doing so well." WHAT?!?!?!? No!!!!! In my little make-believe world, there is no survival of the fittest, none of this food chain nonsense. Right right. I know I am being a hypocrite because I sure do love a hamburger or steak. But whatever! I did NOT need to experience this little display of the Wild Kingdom. Now, poor Roger knew what was in store...and therefore thought before responding to me. He knew, there would be a series of mental gymnastics accompanied by the verbal manifestation by me... " I should go over there and save that Robin. I should chase that hawk away....oh, but if I do that, do you think the Robin is hurt? Oh, no. What if it is hurt? Then what do I do? Mouth to beak resuscitation? Oh no. This isn't good! Oh no, what if I need to help put it out of its misery. OH NO. This isn't good at all!" And as is so often the case, my very patient husband paused again prior to responding and then said, " why don't you try waving your arms at it". Hmmm, ok. Sounds reasonable. I did just that and then the beast flew off with the limp body of its prey. uggggh. uggggh!!! Then Roger only had to endure another 15 minutes of me lamenting the fact we had just witnessed Wild Kingdom and I didn't like it all. He wisely knew those 15 minutes would be much shorter than the possible time he would have to endure of me trying to rescue the poor feathered critter or worse yet have to put it out of its misery. Roger is a wise, very patient soul.
Roger and I are slowly finding our voice. Its been almost a week and a half since we first heard the news. And though the pain and horror still runs as an under current threatening to pull us under, we are also slowly starting to find a buoyancy in what has to be day-to-day life. And with each passing day, comes our ability to talk a little more. Roger knows, despite how painful it is/will be, that people need to "be" with him, to maybe say "I love you and I hate what you are going through" or maybe just "be" with him. The hardest part is 1) he is naturally very emotional, 2) he doesn't want people to be sad or hurt, 3) he is obsessed with getting projects done and tries to channel his energies in that direction, and 4) he doesn't want cancer to define him so he doesn't want conversations to alter and focus on the disease. Anyway, that's my long winded way of saying we are slowly and will continue to come out of our hermit-cave... and will continue to find our voice. Please forgive our previous silence or abbreviated conversations.
For the time being, the focus is one day at a time. And, now its time to shuffle one sleepy husband off to bed. Love and hugs, a (and a snoozing r)
Roger said his skin is starting to feel sensitive and hot. I've noticed its starting to get a little red. We anticipated this would happen but expected it would be sometime next week. Not this week. He will have to start wearing a hat with a brim all the way around it to protect the skin around his ears and the back of his head. My dad and mom bought him a gorgeous "Indiana Jones" type hat to wear. So, he's covered there...as long as Mr. Stubborn will wear it! Additionally, as of this evening, Roger is feeling fatigued. Now this may be because he was busy with projects and running errands today...but I think its probably the radiation. He is fast a sleep on the sofa across from me and has been snoozing for the past 45 minutes and he hasn't even taken his evening medicine which is what normally knocks him out. So, when he wakes he'll have a slew of medicine to take and then we will eventually shuffle off to bed.
And speaking of medicine, we think we finally have his pain management under control. His fentynal patch dosage has been increased and now he is taking oxycodon instead of hydrocodon which allows him the ability to take it more often. And finally, finally, the first time in years he doesn't feel pain. Obviously it could be the fact the dosage is dialed up. Regardless, we'll take the peace it provides. We have figured out the medicine dance to get him 3-4 hour chunks of sleep, which for him is like the rest of us sleeping for two days straight.
Lest you think the Wethington black-cloud of bad luck has moved on, thought I share our most recent little mishap. When we got home from radiation last night, we each set about doing our own thing. Roger went to the basement to check on something he had been painting. Next thing I know, I hear the sound of the shopvac. I go downstairs to see Roger sucking up the mini-lake which had formed in the basement. Apparently our outside faucet froze sometime this winter. Well, when I watered my plants in the courtyard this past week, I turned on the faucet...and thereby created a lake in the basement. Awesome. Fortunately, this great young guy, Eric, who has worked with Roger for many years was coming over today to help with some of our many projects. Eric has been a godsend for us in helping knock out all the various projects we, or rather Roger has. Well, instead of tackling one of the previously scheduled projects...Eric repaired our indoor lake-builder. Really, can you believe the luck? It wasn't even that cold this winter. Whatthehell?
I meant to share this with you earlier in the week. We had an amusing (well maybe not so amusing) moment when down at my parents' river house last weekend. We were sitting on the back porch watching the river flow by when we heard the "pa-thunk" of a bird hitting the window of the neighbor's house. We both looked and saw a robin dart off and then immediately looked to the ground to see if we could see the dazed other robin. Instead we saw a bird sitting on the ground looking around as if nothing happened...and a bunch of feathers in the surrounding area. Hmmmm. I asked Roger if he thought the bird was just a little confused. He paused for a moment, contemplating the response and replied, "um no. He is perfectly fine. The robin underneath him...isn't doing so well." WHAT?!?!?!? No!!!!! In my little make-believe world, there is no survival of the fittest, none of this food chain nonsense. Right right. I know I am being a hypocrite because I sure do love a hamburger or steak. But whatever! I did NOT need to experience this little display of the Wild Kingdom. Now, poor Roger knew what was in store...and therefore thought before responding to me. He knew, there would be a series of mental gymnastics accompanied by the verbal manifestation by me... " I should go over there and save that Robin. I should chase that hawk away....oh, but if I do that, do you think the Robin is hurt? Oh, no. What if it is hurt? Then what do I do? Mouth to beak resuscitation? Oh no. This isn't good! Oh no, what if I need to help put it out of its misery. OH NO. This isn't good at all!" And as is so often the case, my very patient husband paused again prior to responding and then said, " why don't you try waving your arms at it". Hmmm, ok. Sounds reasonable. I did just that and then the beast flew off with the limp body of its prey. uggggh. uggggh!!! Then Roger only had to endure another 15 minutes of me lamenting the fact we had just witnessed Wild Kingdom and I didn't like it all. He wisely knew those 15 minutes would be much shorter than the possible time he would have to endure of me trying to rescue the poor feathered critter or worse yet have to put it out of its misery. Roger is a wise, very patient soul.
Roger and I are slowly finding our voice. Its been almost a week and a half since we first heard the news. And though the pain and horror still runs as an under current threatening to pull us under, we are also slowly starting to find a buoyancy in what has to be day-to-day life. And with each passing day, comes our ability to talk a little more. Roger knows, despite how painful it is/will be, that people need to "be" with him, to maybe say "I love you and I hate what you are going through" or maybe just "be" with him. The hardest part is 1) he is naturally very emotional, 2) he doesn't want people to be sad or hurt, 3) he is obsessed with getting projects done and tries to channel his energies in that direction, and 4) he doesn't want cancer to define him so he doesn't want conversations to alter and focus on the disease. Anyway, that's my long winded way of saying we are slowly and will continue to come out of our hermit-cave... and will continue to find our voice. Please forgive our previous silence or abbreviated conversations.
For the time being, the focus is one day at a time. And, now its time to shuffle one sleepy husband off to bed. Love and hugs, a (and a snoozing r)
Tuesday, March 20, 2012
Day one
Today was the first day of radiation. I don't know that I can adequately capture how we were feeling today...all the way from yesterday afternoon through this evening. Anxiety, fear, confusion, empty, lost, agitated, hopeful...you name it and we probably touched or felt that emotion. How do you muster up the courage, yet again, to endure the unknown in hopes of squeezing out more life...but that life could inherently be more of the same pain, discomfort and non-quality-life Roger has experienced over the last 2.5 years. That's where the hopeful stuff needs to kick in .
The radiation appointment was early this evening. Left the house and pretty much drove in silence. Roger staring out the windshield (he was driving) and I was staring out my window. (When did all the flowering tree bloom??) We got to the radiation/oncology center and had to wait about 30 minutes. It was deja vu all over again. Same ol' waiting room, same ol' feeling of anxiety. There was no comfort in the familiarity. None whatsoever. Once they called Roger back, I was left in the painful quiet of the waiting area. We were the last patient of the day. So with nothing but thoughts to rattle around in my head, I found myself staring into empty space. At some point my hand ended up resting on my chest as though holding my heart in. I brought lists of to-dos and an article to be read and a separate journal I've started...and nothing, nothing could get my attention but the open space and the random thoughts rattling in my head.
Roger finally came out about 20-25 minutes later. The procedure lasted about 15 minutes but the set up took a while. As we walked out to the car, hand in hand, he said "that was pretty unsettling. I could 'taste' it when they started the radiation and could 'smell' it. This is not going to be pleasant." All I could offer was a deep sigh and then said, "Take it one day at a time. Do what you can do. Don't project ahead beyond the day in front of you. And, you always have the option of stopping. So, for now...one day at a time." And that was that. When we got home Roger said he wanted to go for a walk to "get this stuff out of my system". So, we did a couple laps around the neighborhood. No conversation, just holding hands and randomly giving each other a hand squeeze.
We've been building a to-do list covering the house, cars, rental properties, etc etc etc. The list is about 2 miles long. Our friend Paul came over this afternoon and gave us a 101 tutorial on ebay (we have a lot of shit to sell). I have a feeling poor Paul may have to give this tutorial a couple more times. While we are smarter than we look....ebay is still a mystery to us. We have committed to each other that we will NOT fixate on the list but rather will use it as a reference and will "pick off the low hanging fruit".
The game plan for treatment is radiation every day for the next 13 days.. We anticipate with each treatment, the radiation builds (as it did over 2 years ago) and the fatigue and other potential side effects will build. One day at a time. One day at a time.
much love, a & r
The radiation appointment was early this evening. Left the house and pretty much drove in silence. Roger staring out the windshield (he was driving) and I was staring out my window. (When did all the flowering tree bloom??) We got to the radiation/oncology center and had to wait about 30 minutes. It was deja vu all over again. Same ol' waiting room, same ol' feeling of anxiety. There was no comfort in the familiarity. None whatsoever. Once they called Roger back, I was left in the painful quiet of the waiting area. We were the last patient of the day. So with nothing but thoughts to rattle around in my head, I found myself staring into empty space. At some point my hand ended up resting on my chest as though holding my heart in. I brought lists of to-dos and an article to be read and a separate journal I've started...and nothing, nothing could get my attention but the open space and the random thoughts rattling in my head.
Roger finally came out about 20-25 minutes later. The procedure lasted about 15 minutes but the set up took a while. As we walked out to the car, hand in hand, he said "that was pretty unsettling. I could 'taste' it when they started the radiation and could 'smell' it. This is not going to be pleasant." All I could offer was a deep sigh and then said, "Take it one day at a time. Do what you can do. Don't project ahead beyond the day in front of you. And, you always have the option of stopping. So, for now...one day at a time." And that was that. When we got home Roger said he wanted to go for a walk to "get this stuff out of my system". So, we did a couple laps around the neighborhood. No conversation, just holding hands and randomly giving each other a hand squeeze.
We've been building a to-do list covering the house, cars, rental properties, etc etc etc. The list is about 2 miles long. Our friend Paul came over this afternoon and gave us a 101 tutorial on ebay (we have a lot of shit to sell). I have a feeling poor Paul may have to give this tutorial a couple more times. While we are smarter than we look....ebay is still a mystery to us. We have committed to each other that we will NOT fixate on the list but rather will use it as a reference and will "pick off the low hanging fruit".
The game plan for treatment is radiation every day for the next 13 days.. We anticipate with each treatment, the radiation builds (as it did over 2 years ago) and the fatigue and other potential side effects will build. One day at a time. One day at a time.
much love, a & r
Sunday, March 18, 2012
Almost a week later from when we heard the news and several days since my post on Wednesday and the shock and horror of it all hasn't lessened. The wound is a little less raw but by the pain and deep sadness hasn't lifted, nor do I think it will. We both know it may "move back in the line" of life...but will always be there. And, that's ok...it has to be.
We've take a few of the large pieces of reality which survived the crash into our lap on Monday and have suspended them from a new thread in hopes of breathing again and in hopes of finding a groove to live life to its fullest. I know that sounds a melodramatic, but really, you stop taking full lungs-of-breath when you hear this kind of news. Its like a huge elephant sat on your chest.
The game plan for the next few weeks is whole-brain radiation once a day for approximately 15 minutes each treatment. The doctor has prescribed approximately 13-14 treatments. Roger said he wants to try but will stop if it is too much. And, I wholly support whatever he wants to do. I am in awe of his strength and perseverance. This radiation thing rocks me to my core. #1, I hold the brain as absolutely precious. I can't get my arms around messing with it. #2, the actual treatment freaks me out. They make a mask of your face with this mesh-stuff. It is completely pressed against every inch of your face and wraps to the side of your head. For each treatment, you "wear" this mask which is then fastened to a board so that you cannot move. Makes my heart rush to even type this. God love Roger, he said he can endure it for 15 minutes.
I think we are going to chill here at the river for another day/night. Will probably head back to Indy Monday. The radiation appointment is 6:30pm, so there is no rush. We'll see how he handles the treatment and then will keep trying to find that illusive "groove". I'll head into work during the week for a while a couple days. I've been making calls and working on the computer from home. The other (well, there are more than two) impossible thing about all this is trying to merge into life as though nothing is going on.
My favorite moments as of late include the moments when we finish each other's sentences or make some silly noise at the same time randomly. Example: we were driving down here to the river house, we passed a business in the middle of a small town and saw a chicken along the side of the road pecking at the ground. And then, simultaneously we both started clucking. Silly, but funny. Another favorite moment is when we go to bed, I settle in behind Roger and spoon behind his skinny evaporating frame. As his Ambien starts to settle in, his body quietly starts to relax with little body twitches. With my arm wrapped around him, his breathing settles and slows and soon the quiet "puff. puff. puff." of him breathing comes as he falls fast a sleep. And there is peace. Of course, then I'm lost in my thoughts but soon find my own peace with him and drift off to sleep.
The sun is shining. Temperatures are absolutely toasty. And its, just beautiful. We will probably head back over to the boat at some point to work on a few more projects and then will come back here for an afternoon nap.
Hoping your day is peaceful and beautiful in your part of the world.
hugs, a&r
Saturday, March 17, 2012
Not a post
I am having computer challenges tonite, so no post. Entering this from my phone....and its not going well. I fogot the powercord for my laptop... Figures. We are at my parents' river house in southern IN. its nice and peaceful and close to the boat so we can work on projects.
Will get on my parents computer tomorrow to post. - a
Will get on my parents computer tomorrow to post. - a
Wednesday, March 14, 2012
Suspended reality
Our reality has been suspended from fine threads above our head. We thought the threads were made of some indestructible material, carbon fibre? As the threads snapped this past Monday and reality landed in our lap with an explosion, we realized the threads were just that.. threads. And those threads were worn thin.
So there is no easy way to think this let alone to say this other than to say it. Roger's cancer has spread again. He had a CT scan on Monday which scanned from his pelvis to the top of his head. The normal process is to have the scan and then there is a follow-up results meeting several days later with the oncologist. Instead, we received an urgent call from the oncologist's office asking us to come back immediately. And in one single split second the world stopped. It crashed to a stop. A huge horrific stop. Even optimistic me couldn't find a "no, its not going to be that bad." thought. I looked at Roger (I went with him to the oncology center for the scan) and saw terror reflected back at me and know I was a mirror image back to him. So, we gathered our stuff and quietly walked back out to the car and drove back to the oncology center. All the while, I'm pretty sure we didn't take a breath. Once in the office, we were rushed through to an examination room. This NEVER happens. There is always a wait no matter what. Not for us.
Dr. Birhirray immediately came into the exam room as we sat there holding hands. He immediately walked up to Roger (who had stood up to greet him) and hugged Roger all the while saying "I'm sorry. The news isn't good" and then turned to me to hug me. Somewhere in those 1-2 minutes a tremendous roar of white noise took over my ears. My heart stopped beating and I slipped back into my chair. Dr. B pulled a stool up and sat in our personal space knees wrapped into our knees. And then, Dr. B looked into our eyes and told us the cancer had spread again. Spread again. Roger sat stoically. I silently shattered into a million pieces. The cancer had spread to Roger's brain. And quietly, as they are now, tears slowly made a path down my cheek. Roger on the other hand had assumed the role I had so often held in the past, listening to Dr. B and asking a few questions devoid of emotion. Dr. B said the radiologist called him immediately when he saw brain lesions. Dr. B asked us to stay in the room. He wanted to go back to his office and see the rest of the films (he had only received a verbal from the radiologist) to see how the cancer in Roger's chest looked. As quickly as he had come into the room, he left. And like a tornado or tsunami, he left a wake of devastation.
We sat silently trying to process the unfathomable. Trying to comprehend the incomprehensible. And then the emotional flood gate opened for us both. And we drowned together in this torrent of emotion. There were no words either of us could say. Nothing. Only feel the raw emotion and hope we were both having a really horrible nightmare.
After a while, Dr. B returned. He had read the entire film. The cancer in Roger's chest was still present but had not grown. Definitely tumors in the brain but he couldn't say how many. All he could say, "This is very serious. I want you to see Dr. Leagre, the radiation oncologist downstairs." The recommended course of treatment is radiation of the brain. No chemo. Apparently there is this thing called the blood/brain barrier where the brain is protected from treatment delivered via the blood stream so chemo technically doesn't reach/treat the brain. Dr. B slowly explained to us the severity of this spread of cancer. He explained the headaches Roger felt last week were most likely as a result of the brain swelling and some bleeding from the tumors. So, radiation is imperative to stop or slow the growth. If we don't do radiation, the deterioration will be rapid and will be painful. More headaches, confusion, loss of balance, and more horrible stuff. If we don't do treatment, time will be precious and little. Despite having a note pad on my lap, and a pen in hand, and internally screaming at myself PAY ATTENTION!!...I'm pretty sure I only heard half what he said. Radiation would not only prevent or help reduce the chance of the conditions just mentioned but would also buy more time.
Having heard all we could hear, we decided it was time to go downstairs to talk to the radiation oncologist to get his take on all this. Dr. B invited us to come back the next day or the day after once we had processed everything we heard. He knew we would have more questions once we better understood the gravity. So, we made our way downstairs to Dr. Leagre's office. Its all like deja vu. We had done the radiation dance over 2.5 years ago. Deja vu.
I will share with you a total Roger moment we had despite the horror of the situation. The radiation nurses took us into an exam room to interview us, filling out forms. At some point during the course of the conversation Roger said, "oh, we're not doing treatment today? And I wore clean underwear". I turned and looked at him, shaking my head and smiling and replied "I would hope EVERY day you wear clean underwear". Meanwhile these two very nice girls kept looking down at their charts without looking up at us. Roger than said, "well no. Usually I don't wear any underwear". Oh, nice. Way to make an impression. They both caved and started laughing. Laughter doesn't fix anything...but it certainly can smooth the edge of a ragged heart.
Fast forward. Dr. L said he wanted Roger to have an MRI (which he did yesterday) to determine how much the spread. Once Dr. L knew how many lesions there are, then he could recommend the best treatment. Basically we were faced with either "spot" radiation with intense very high level radiation to individual spots. Only used for 2-3 spots, maybe 4. Or the other treatment is whole brain radiation. My pathetic brain can only envision frying a brain. Whole brain radiation literally radiates the entire brain at much lower doses but it happens every day for approximately 10-14 days. Potential side effects: swelling of the brain (treated with steroids), confusion, exhaustion. Those are the biggies. Dr. L said he really did not believe it would be hard on Roger especially given the sheer hell Roger has been through over the last 2.5 years.
The MRI revealed Roger has 15-20 lesions in the brain. Very serious. Only treatment option is whole brain radiation. That's it. So, we were faced with the decision of radiation or no radiation. And faced with a much larger reality we have long been ignoring. There is no such thing as forever. I thought we'd be together ...forever. Reality is now suggesting this won't be the case. We used to talk in terms of years but now are faced with talking in terms of months.
After three more doctors' appointments today - one with the radiologist to answer follow up questions we had, one with the oncologist to answer follow up questions we had, and one with the pain management doctor to try to control the non-stop pain Roger has - we have made a decision. And, the decision after our own research, and the repeated conversations with the doctors, Roger has decided he wants to proceed with radiation. He, we, are going to keep fighting the fight and doing all we possibly can. AND, we are going to focus on each and every day as it comes...living life to its fullest as best we can.
I'm so sorry to deliver this news via the blog but simply cannot do it in person. It hurts too much. Next week, it will be less raw and we will hopefully... be able to communicate better. Its hard to believe its only been just over 48 hours ago when this part of the journey started. And it still doesn't seem real. I'll write more tomorrow. Its taken me days to get this out to you.
So, now you know all we know. We are both crushed. None of this makes sense. We both - me especially - are going to still hope for a miracle.
much love to all, a & r
So there is no easy way to think this let alone to say this other than to say it. Roger's cancer has spread again. He had a CT scan on Monday which scanned from his pelvis to the top of his head. The normal process is to have the scan and then there is a follow-up results meeting several days later with the oncologist. Instead, we received an urgent call from the oncologist's office asking us to come back immediately. And in one single split second the world stopped. It crashed to a stop. A huge horrific stop. Even optimistic me couldn't find a "no, its not going to be that bad." thought. I looked at Roger (I went with him to the oncology center for the scan) and saw terror reflected back at me and know I was a mirror image back to him. So, we gathered our stuff and quietly walked back out to the car and drove back to the oncology center. All the while, I'm pretty sure we didn't take a breath. Once in the office, we were rushed through to an examination room. This NEVER happens. There is always a wait no matter what. Not for us.
Dr. Birhirray immediately came into the exam room as we sat there holding hands. He immediately walked up to Roger (who had stood up to greet him) and hugged Roger all the while saying "I'm sorry. The news isn't good" and then turned to me to hug me. Somewhere in those 1-2 minutes a tremendous roar of white noise took over my ears. My heart stopped beating and I slipped back into my chair. Dr. B pulled a stool up and sat in our personal space knees wrapped into our knees. And then, Dr. B looked into our eyes and told us the cancer had spread again. Spread again. Roger sat stoically. I silently shattered into a million pieces. The cancer had spread to Roger's brain. And quietly, as they are now, tears slowly made a path down my cheek. Roger on the other hand had assumed the role I had so often held in the past, listening to Dr. B and asking a few questions devoid of emotion. Dr. B said the radiologist called him immediately when he saw brain lesions. Dr. B asked us to stay in the room. He wanted to go back to his office and see the rest of the films (he had only received a verbal from the radiologist) to see how the cancer in Roger's chest looked. As quickly as he had come into the room, he left. And like a tornado or tsunami, he left a wake of devastation.
We sat silently trying to process the unfathomable. Trying to comprehend the incomprehensible. And then the emotional flood gate opened for us both. And we drowned together in this torrent of emotion. There were no words either of us could say. Nothing. Only feel the raw emotion and hope we were both having a really horrible nightmare.
After a while, Dr. B returned. He had read the entire film. The cancer in Roger's chest was still present but had not grown. Definitely tumors in the brain but he couldn't say how many. All he could say, "This is very serious. I want you to see Dr. Leagre, the radiation oncologist downstairs." The recommended course of treatment is radiation of the brain. No chemo. Apparently there is this thing called the blood/brain barrier where the brain is protected from treatment delivered via the blood stream so chemo technically doesn't reach/treat the brain. Dr. B slowly explained to us the severity of this spread of cancer. He explained the headaches Roger felt last week were most likely as a result of the brain swelling and some bleeding from the tumors. So, radiation is imperative to stop or slow the growth. If we don't do radiation, the deterioration will be rapid and will be painful. More headaches, confusion, loss of balance, and more horrible stuff. If we don't do treatment, time will be precious and little. Despite having a note pad on my lap, and a pen in hand, and internally screaming at myself PAY ATTENTION!!...I'm pretty sure I only heard half what he said. Radiation would not only prevent or help reduce the chance of the conditions just mentioned but would also buy more time.
Having heard all we could hear, we decided it was time to go downstairs to talk to the radiation oncologist to get his take on all this. Dr. B invited us to come back the next day or the day after once we had processed everything we heard. He knew we would have more questions once we better understood the gravity. So, we made our way downstairs to Dr. Leagre's office. Its all like deja vu. We had done the radiation dance over 2.5 years ago. Deja vu.
I will share with you a total Roger moment we had despite the horror of the situation. The radiation nurses took us into an exam room to interview us, filling out forms. At some point during the course of the conversation Roger said, "oh, we're not doing treatment today? And I wore clean underwear". I turned and looked at him, shaking my head and smiling and replied "I would hope EVERY day you wear clean underwear". Meanwhile these two very nice girls kept looking down at their charts without looking up at us. Roger than said, "well no. Usually I don't wear any underwear". Oh, nice. Way to make an impression. They both caved and started laughing. Laughter doesn't fix anything...but it certainly can smooth the edge of a ragged heart.
Fast forward. Dr. L said he wanted Roger to have an MRI (which he did yesterday) to determine how much the spread. Once Dr. L knew how many lesions there are, then he could recommend the best treatment. Basically we were faced with either "spot" radiation with intense very high level radiation to individual spots. Only used for 2-3 spots, maybe 4. Or the other treatment is whole brain radiation. My pathetic brain can only envision frying a brain. Whole brain radiation literally radiates the entire brain at much lower doses but it happens every day for approximately 10-14 days. Potential side effects: swelling of the brain (treated with steroids), confusion, exhaustion. Those are the biggies. Dr. L said he really did not believe it would be hard on Roger especially given the sheer hell Roger has been through over the last 2.5 years.
The MRI revealed Roger has 15-20 lesions in the brain. Very serious. Only treatment option is whole brain radiation. That's it. So, we were faced with the decision of radiation or no radiation. And faced with a much larger reality we have long been ignoring. There is no such thing as forever. I thought we'd be together ...forever. Reality is now suggesting this won't be the case. We used to talk in terms of years but now are faced with talking in terms of months.
After three more doctors' appointments today - one with the radiologist to answer follow up questions we had, one with the oncologist to answer follow up questions we had, and one with the pain management doctor to try to control the non-stop pain Roger has - we have made a decision. And, the decision after our own research, and the repeated conversations with the doctors, Roger has decided he wants to proceed with radiation. He, we, are going to keep fighting the fight and doing all we possibly can. AND, we are going to focus on each and every day as it comes...living life to its fullest as best we can.
I'm so sorry to deliver this news via the blog but simply cannot do it in person. It hurts too much. Next week, it will be less raw and we will hopefully... be able to communicate better. Its hard to believe its only been just over 48 hours ago when this part of the journey started. And it still doesn't seem real. I'll write more tomorrow. Its taken me days to get this out to you.
So, now you know all we know. We are both crushed. None of this makes sense. We both - me especially - are going to still hope for a miracle.
much love to all, a & r
Friday, March 9, 2012
All is fine on this end. Not great. Not terrible. Just fine. We have taken a walk every evening since Tues. Funny thing. Tuesday when we went out for the first walk, Roger said "you gotta make me go for a walk every day. It is good for me. You gotta make me. No matter what."....hmmmm, I looked at him like he had three heads. My response, "Ok, sure. Sure. Are you crazy? Have you heard how you growl at me when I make those suggestions? Do you think I like having my head chewed off?? Ok. Sure. I will do it...but you cannot...or at least have to try not to growl at me." And happily here today after several walks, I'm pleased to say he hasn't growled once. Maybe a grumble or two, but no growling.
I thought there was a chance he was going to go down to the boat today. Unfortunately he woke up in the middle of the night thinking he might be coming down with a cold. So, rather than push himself too much, he elected to lay low today and dose up on vitamin C and Zinc. Too early to tell, but I think he's ok. He has been chasing a splitting headache all day. Said it was the first time in 2 years since he's really had a headache. Now we don't know that means he hasn't had any headaches in 2 years, just that he hasn't felt any. All the medications he is on would probably prevent him from feeling headaches for the most part. So, it gave us both a moment of pause as we wondered if there is some other reason for the headache. This stupid cancer stuff takes the everyday things we would normally over look and somehow made it all so much more complex.
Not much more on this end. Sunshine has been nice to see along with warmer temps. We're both a little out of sorts (comes and goes). Guess its par for the course.
Hope all is well with you and yours. love, a & r
I thought there was a chance he was going to go down to the boat today. Unfortunately he woke up in the middle of the night thinking he might be coming down with a cold. So, rather than push himself too much, he elected to lay low today and dose up on vitamin C and Zinc. Too early to tell, but I think he's ok. He has been chasing a splitting headache all day. Said it was the first time in 2 years since he's really had a headache. Now we don't know that means he hasn't had any headaches in 2 years, just that he hasn't felt any. All the medications he is on would probably prevent him from feeling headaches for the most part. So, it gave us both a moment of pause as we wondered if there is some other reason for the headache. This stupid cancer stuff takes the everyday things we would normally over look and somehow made it all so much more complex.
Not much more on this end. Sunshine has been nice to see along with warmer temps. We're both a little out of sorts (comes and goes). Guess its par for the course.
Hope all is well with you and yours. love, a & r
Tuesday, March 6, 2012
Two worlds?
Do you think its possible to live in two worlds at once? Literally? Figuratively? Don't worry, I'm not talking sci-fi freaky stuff, nor am I schizophrenic (to my knowledge). I guess I'm speaking metaphorically...two different worlds. Today I was sitting in the middle of a meeting with a bunch of guys at work and we were joking about something. As the laughter spread around the room, I had a moment as though outside myself. I reflected how strange it was to laugh and carry on in this work-world, when my home-world was in a whole other universe. I tend to suspend one reality while in the other and vice versa. I often think about this when I'm driving to work or headed home at the end of the day. I don't know if that makes any sense or not....kinda odd.
This evening when I got home, I announced what I was going to make for dinner and set about getting all the ingredients from the frig. Thought we'd try schnitzel. It has previously been one of Roger's favorites. I don't make it often because its always a big mess, takes a fair amount of time with prep and clean up, AND, I just never know what will or wont taste good to Roger. Regardless, I decided we'd give it a whirl with mashed potatoes. As I was digging out spices, Roger asked if we could go for a walk before I started cooking. ABSOLUTELY! I was thrilled he wanted to get out of the house...I could delay cooking for a while.
Despite the warm temperatures we both bundled up (it was a little chilly for me...which means cold for Roger). And off we went, my arm snaked through his. At some point during the walk, we got talking about "stuff" , all kinds of stuff. Roger shared with me his ongoing (growing) concern about his health and the fact he feels like he is getting weaker. We both thought stopping chemo and "taking a break from it" would mean he would start to feel dramatically better.... He said today was the first "less bad" day in over the last week or so. Not that he felt good by any means but that he felt less bad. Having said that, he said he still felt he was getting weaker and weaker and that he was concerned he was going to be disabled soon. WHAT?!?! OK, were I in a position to give in to my emotions I would have stopped and crumpled into an emotional pile of ooze at the thought. THAT simply is not an option (remember suspending reality?). So, I paused before replying. Reflected for a moment and then took my standard approach and started asking a series of questions (law school training has to have SOME value!!). "Did you feel this weak in Florida? Do you think the weather here could have any impact on how you're feeling? Do you think the looming CT scan could be weighing you down?" And he replied, "yes, I've thought about that but I can't get over how weak I feel and how many things I have to get done. I don't want you to have deal with all of my projects if I can't do the work." So, the problem-solver in me decided to turn our attention to what can we DO verses all the "what-ifs" we can't control and don't even know if these what-ifs will appear. And so we took his list of projects and tried to break it down to identify one or two that could be knocked out. Knock out a couple "easy" items to check the list and clear a little of the mental clutter. Project 1: work on this mercedes car he horse traded for...and SELL IT. Project 2: get the boat motor further disassembled so that we could bring in a mechanic to do the hard work. All the while I said, we need to hire people to help when we need the help. We do NOT need to do it all ourselves. And, I said, we need to let people help us when they offer. A completely foreign concept to both of us.
Blah blah blah. We've both been lost in a lot of big thoughts today. No answers to any of the questions and a raging under current of emotion threatening to suck us in like an under-tow. Keep a life preserver handy and hold on tight!!
Sorry to ramble. I just can't imagine my world with out an active Roger who fixes it all and takes on waaaaay tooooo much and gets bored with one project and then turns to a new one while I chase along behind him trying to organize the chaos and limit the in-flow of new projects until old ones exit. And so, we will continue to suspend whatever reality is threatening our small moments of peace and will instead focus on finding solutions whenever possible...and, will try to keep focused on the positive....not always the easiest thing to do...but a focal point nonetheless.
Keep your eye fixed on your focal point especially during the turbulent storms of life
Happy Tuesday. Luv, a & r (sorry for any typos grammatical issues...I'm too pooped to check)
This evening when I got home, I announced what I was going to make for dinner and set about getting all the ingredients from the frig. Thought we'd try schnitzel. It has previously been one of Roger's favorites. I don't make it often because its always a big mess, takes a fair amount of time with prep and clean up, AND, I just never know what will or wont taste good to Roger. Regardless, I decided we'd give it a whirl with mashed potatoes. As I was digging out spices, Roger asked if we could go for a walk before I started cooking. ABSOLUTELY! I was thrilled he wanted to get out of the house...I could delay cooking for a while.
Despite the warm temperatures we both bundled up (it was a little chilly for me...which means cold for Roger). And off we went, my arm snaked through his. At some point during the walk, we got talking about "stuff" , all kinds of stuff. Roger shared with me his ongoing (growing) concern about his health and the fact he feels like he is getting weaker. We both thought stopping chemo and "taking a break from it" would mean he would start to feel dramatically better.... He said today was the first "less bad" day in over the last week or so. Not that he felt good by any means but that he felt less bad. Having said that, he said he still felt he was getting weaker and weaker and that he was concerned he was going to be disabled soon. WHAT?!?! OK, were I in a position to give in to my emotions I would have stopped and crumpled into an emotional pile of ooze at the thought. THAT simply is not an option (remember suspending reality?). So, I paused before replying. Reflected for a moment and then took my standard approach and started asking a series of questions (law school training has to have SOME value!!). "Did you feel this weak in Florida? Do you think the weather here could have any impact on how you're feeling? Do you think the looming CT scan could be weighing you down?" And he replied, "yes, I've thought about that but I can't get over how weak I feel and how many things I have to get done. I don't want you to have deal with all of my projects if I can't do the work." So, the problem-solver in me decided to turn our attention to what can we DO verses all the "what-ifs" we can't control and don't even know if these what-ifs will appear. And so we took his list of projects and tried to break it down to identify one or two that could be knocked out. Knock out a couple "easy" items to check the list and clear a little of the mental clutter. Project 1: work on this mercedes car he horse traded for...and SELL IT. Project 2: get the boat motor further disassembled so that we could bring in a mechanic to do the hard work. All the while I said, we need to hire people to help when we need the help. We do NOT need to do it all ourselves. And, I said, we need to let people help us when they offer. A completely foreign concept to both of us.
Blah blah blah. We've both been lost in a lot of big thoughts today. No answers to any of the questions and a raging under current of emotion threatening to suck us in like an under-tow. Keep a life preserver handy and hold on tight!!
Sorry to ramble. I just can't imagine my world with out an active Roger who fixes it all and takes on waaaaay tooooo much and gets bored with one project and then turns to a new one while I chase along behind him trying to organize the chaos and limit the in-flow of new projects until old ones exit. And so, we will continue to suspend whatever reality is threatening our small moments of peace and will instead focus on finding solutions whenever possible...and, will try to keep focused on the positive....not always the easiest thing to do...but a focal point nonetheless.
Keep your eye fixed on your focal point especially during the turbulent storms of life
Happy Tuesday. Luv, a & r (sorry for any typos grammatical issues...I'm too pooped to check)
Monday, March 5, 2012
Up down up down up down. Nope, not a yo-yo. Nope, not a sewing machine needle. Yep, Me, making laps up and down the stairs this evening. When I got home this evening, Roger seemed a little off. We ate dinner and the silence seemed to increase, as did the slump to his posture both of which are usually indicators that he isn't feeling that great. So, after a while I went upstairs (trip number 1 of many) and started a bath for Roger. Turned on the space heater in the bathroom to additionally warm the bathroom and then went back down stairs to my little rolled up ball of a husband. In the gap behind him, I wedged myself so that I could wrap my arms and legs around him. And quietly rested my head against Roger's back. Blah blah blah of the TV droned on in the background and we sat there. With my cheek against Roger's back, I could feel virtually every bone in his back & shoulders. Takes my breath away.
Then, after a while he (before the tub overflowed!) Roger went up and took a bath to ease the aches and pains. I made a couple trips back upstairs to check on him, "Need something to drink? Need a towel? Need anything?" And then made my way back downstairs. Later, as I heard the water draining from the tub, I made my way back upstairs to find Roger resting in bed. So, I crawled onto the bed next to him and watched TV with him ...a program about Mini Coopers....ugh. Oh well, it entertained Roger. I hung out for about 20 minutes then had to give up....the program was putting me to sleep! Anyway, he's feeling a little better. Couple more trips up the stairs and down the stairs and back up to retrieve the evening collection of medicines, our cell phones, and turn off all the lights downstairs and now we are settled in bed along with one of our four-legged, heat-seeking beasts, Yoda. I anticipate, Hemmi will join later in the middle of the night once we are fast a sleep.
Later this week, if the weather cooperates and Roger's body cooperates (more important than the weather, really), he is planning on making a trip down to the boat to check on it. We THINK the boat is still floating and in one piece after tornadoes ravaged southern Indiana and northern Kentucky. We've employed the proverbial ostrich approach...stick your head in the sand and hope like hell everything is ok. Also, he wants to try to do a couple projects while down there. One of the motors is partially disassembled because it needs work. So, I think he'll be doing something related to that. The goal is to get the boat up and running in tip top shape by spring/early summer. Ultimately Roger really wants to move the boat to Florida through the river ways. His goal is to keep it moored down there and then we fly down several times during the year to use it. We don't see eye to eye on this topic....not the first time we haven't seen eye to eye.
Giving up to get some shut eye. Nights are never long enough. g'nite. love, a & r
Then, after a while he (before the tub overflowed!) Roger went up and took a bath to ease the aches and pains. I made a couple trips back upstairs to check on him, "Need something to drink? Need a towel? Need anything?" And then made my way back downstairs. Later, as I heard the water draining from the tub, I made my way back upstairs to find Roger resting in bed. So, I crawled onto the bed next to him and watched TV with him ...a program about Mini Coopers....ugh. Oh well, it entertained Roger. I hung out for about 20 minutes then had to give up....the program was putting me to sleep! Anyway, he's feeling a little better. Couple more trips up the stairs and down the stairs and back up to retrieve the evening collection of medicines, our cell phones, and turn off all the lights downstairs and now we are settled in bed along with one of our four-legged, heat-seeking beasts, Yoda. I anticipate, Hemmi will join later in the middle of the night once we are fast a sleep.
Later this week, if the weather cooperates and Roger's body cooperates (more important than the weather, really), he is planning on making a trip down to the boat to check on it. We THINK the boat is still floating and in one piece after tornadoes ravaged southern Indiana and northern Kentucky. We've employed the proverbial ostrich approach...stick your head in the sand and hope like hell everything is ok. Also, he wants to try to do a couple projects while down there. One of the motors is partially disassembled because it needs work. So, I think he'll be doing something related to that. The goal is to get the boat up and running in tip top shape by spring/early summer. Ultimately Roger really wants to move the boat to Florida through the river ways. His goal is to keep it moored down there and then we fly down several times during the year to use it. We don't see eye to eye on this topic....not the first time we haven't seen eye to eye.
Giving up to get some shut eye. Nights are never long enough. g'nite. love, a & r
Sunday, March 4, 2012
Moderation is a good thing. Especially when it comes to eating ice cream or drinking alcohol or watching brain-dead tv or in Roger's case...moderation in what you do and how much you do. He exercised a little moderation and toned down what he did over the weekend. I can't tell you that it made him feel a million % better. At least he didn't feel as absolutely horrible as mentioned in a prior post towards the end of the week.
We had a pretty low key weekend. Mostly house work. Roger napped in the afternoon both Sat and Sun. He seems exceptionally worn out and has a whole bunch of pain. I know the gray weather and cold doesn't help, nor does the CT Scan looming 2 weeks from now. It all adds up. And mixed with this exhaustion and pain is a strong under current of grumpy. All with good reason.
Really not a lot to report today. I think we're both a little off. I'm trying to find the cheery to off set his grumpy. Hard to gear up for a Monday already when we never really found any balance. The weekend seemed to be lost in the twilight zone somewhere...just off kilter.
Anyway, here's to hoping the week is warm and sunny and full of good thoughts and good moods.
Have a great week! a & r
We had a pretty low key weekend. Mostly house work. Roger napped in the afternoon both Sat and Sun. He seems exceptionally worn out and has a whole bunch of pain. I know the gray weather and cold doesn't help, nor does the CT Scan looming 2 weeks from now. It all adds up. And mixed with this exhaustion and pain is a strong under current of grumpy. All with good reason.
Really not a lot to report today. I think we're both a little off. I'm trying to find the cheery to off set his grumpy. Hard to gear up for a Monday already when we never really found any balance. The weekend seemed to be lost in the twilight zone somewhere...just off kilter.
Anyway, here's to hoping the week is warm and sunny and full of good thoughts and good moods.
Have a great week! a & r
Saturday, March 3, 2012
We are a funny (not hilarious funny, but more on the side of odd funny) couple. We're both wildly independent and yet sooo tied to each other. Its not that we have endless laughs or deep conversations or solve any of the world's problems when together but rather we sink into each other like you sink into an old pair of shoes. Um, I just compared myself to old stinky shoes...what has happened to me?!?!?! Last night when we went to bed Roger said "Do you think you can take some extended time off or if you ever changed jobs do you think you could take a month off? I do so much better when you are next to me and I do better when its warm. The numbness in my hands and feet is so much less. And to be honest, I just want you with me." Ok, I don't care how much a workaholic I may be, he simply melted me on the spot. How do you say "I really need to work as much as I can....when all you really want to say is, I'll spend every waking and sleeping moment with you. Squeeze out every moment of the day to be with you." So I simply said I love you more than words and will find a way to spend time with you in the sun.
And speaking of sun....wherethehell is that illusive ball of fire? Storms blew through, literally and figuratively, the past couple days. My friend Lorna's in-laws have been hit hard in southern Indiana in Henryville. I think the city was almost wiped off the map. Their family had five houses in the area....now it sounds like there are only two. Hard to believe it was absolutely beautiful just a couple days prior.
The past two nights have been ok for Roger. He has managed to squeak out 3-5 hours of solid sleep. OH HAPPY DAY....or rather OH HAPPY NIGHT!! The early morning (4:00 am) and on were rough.. Up down up down, thrash around. Finally he gave up at 7:00 and went downstairs to the sofa. And then the rest of the house started to stir...four-legged fur monsters including one pitiful four-legged patient wearing a plastic cone around his head (to prevent tearing out stitches) commanding attention and food. So, guess who else got to get up? :-)
Roger has a CT scan in the next couple weeks followed by a meeting with the oncologist on the 19th to review test results. This is a "regular" quarterly scan. The purpose being to check how well the previous chemo treatments have arrested the cancer's growth. As you can imagine, we both, but Roger especially has a growing anxiety and sense of dread. With each scan, I think (more like I know) we relive the horror of finding out Roger had cancer in the first place and then last summer finding out the cancer had returned and spread. A really really, REALLY bad version of deja vu. I wonder if that growing anxiety isn't partially feeding some of the pain and discomfort Roger has right now. And for that matter, some of the pain in my back and chest. Stress and anxiety are two pretty powerful emotions.
Agenda for the weekend: getting the house pulled back together post travels, laundry, basement project with Roger, clean the fish tank...etc etc etc. Weather doesn't look too promising so I think we may be staying inside for the most part. Maybe a movie. Put some normal into an otherwise not so normal world.
Hope all is well with you. love, a&r
And speaking of sun....wherethehell is that illusive ball of fire? Storms blew through, literally and figuratively, the past couple days. My friend Lorna's in-laws have been hit hard in southern Indiana in Henryville. I think the city was almost wiped off the map. Their family had five houses in the area....now it sounds like there are only two. Hard to believe it was absolutely beautiful just a couple days prior.
The past two nights have been ok for Roger. He has managed to squeak out 3-5 hours of solid sleep. OH HAPPY DAY....or rather OH HAPPY NIGHT!! The early morning (4:00 am) and on were rough.. Up down up down, thrash around. Finally he gave up at 7:00 and went downstairs to the sofa. And then the rest of the house started to stir...four-legged fur monsters including one pitiful four-legged patient wearing a plastic cone around his head (to prevent tearing out stitches) commanding attention and food. So, guess who else got to get up? :-)
Roger has a CT scan in the next couple weeks followed by a meeting with the oncologist on the 19th to review test results. This is a "regular" quarterly scan. The purpose being to check how well the previous chemo treatments have arrested the cancer's growth. As you can imagine, we both, but Roger especially has a growing anxiety and sense of dread. With each scan, I think (more like I know) we relive the horror of finding out Roger had cancer in the first place and then last summer finding out the cancer had returned and spread. A really really, REALLY bad version of deja vu. I wonder if that growing anxiety isn't partially feeding some of the pain and discomfort Roger has right now. And for that matter, some of the pain in my back and chest. Stress and anxiety are two pretty powerful emotions.
Agenda for the weekend: getting the house pulled back together post travels, laundry, basement project with Roger, clean the fish tank...etc etc etc. Weather doesn't look too promising so I think we may be staying inside for the most part. Maybe a movie. Put some normal into an otherwise not so normal world.
Hope all is well with you. love, a&r
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