The days run together frequently when you are chugging along in a stream of not-so-hot days. Roger decided he was going to make a concerted effort to lay low today and just try to take it easy. He totally over did it yesterday. Actually we both did as did my parents. They came to the boat and the four of us worked liked crazed people to get the boat de-winterized and make it "showable" which means we unstacked all the furniture and staged it. We cleaned all bedrooms, bathrooms, kitchen and living area. All the beds were made. We removed all the plastic covering from the carpet and then set about using carpet cleaner to remove all the grease spots from where the mechanic managed to step....where there was a tiny spot of carpet without plastic. HOW did he managed to find those little bits of carpet???? Roger often had to sit down and close his eyes and just chill. Fortunately Mom, Dad and I were a force to be reckoned with and managed to keep buzzing around the boat getting everything done. I'm happy to report it looked gorgeous. I talked to Mom this morning to say thanks again and she captured the "worth it moment" when she said it was pretty cool watching the transformation from dirty winterized boat to show-able boat. Made all the hard work, scraped knuckles, broken nails, and achy backs all worth it. And speaking of "Worthit". We are trying to come up with a new name for the boat. My girlfriend Lorna suggested "Worthit". Since its totally worth it for us and brings us great peace. Pretty cool name. Roger is mulling it over.
As mentioned in the above paragraph, Roger doesn't feel so hot. When I walked in the house this evening after work, I found him bundled up in his chair with a blanket over him. He just can't get/stay warm. We are quite the couple....at any given moment I'm about to literally melt into a pool of ooze or instantaneously burst into flames and Roger is frozen to the touch. Last night when we went to bed, Roger was tucked under the bedspread quilt with an additional blanket on top, I scooted up behind him trying to press as much of me onto his cold skin meanwhile having to hang (your gonna love this glamorous image ....NOT) my big ol' butt and back out of the covers to try to cool down. The front half of me was melting and sweating while Roger snoozed away happily toasty and snug as a bug in a rug. The back half of me was cold to the touch. See? Nice image, huh?
He took a bath again tonight to try to alleviate some of the discomfort. Said that it worked as long as he was in the tub. Somehow the water is an equalizer or something like that. We are upping his pain patch to see if it will help. His pain doctor had talked about upping it to 150 mg before now. We resisted and wanted to try 125 first. Roger doesn't want to be a zombie and wants to be active. So we thought he'd ease into the increase by starting with 125. Since he hasn't had any relief for a while, we are trying 150 since his pain doctor was going to do that the last time we were with him. I'll report back tomorrow or the next day. It takes about 6 hours for the stuff to really kick in.
Work has been crazy busy. Good ol' Murphys Law. I want to be busy and have lots of business (makes it easier to pay bills)...just wonder why it has to be an avalanche? Why not a nice slow steady snowfall of activity coming down in a nice controlled fashion. ohhhhhh, no. Not the case. Can't complain though because the alternative of little or no business is not a good thing.
We checked the calendar to figure out what the dates are for next scan and doctors appointments. We both thought the next MRI would be next week. NOPE, not the case. Its THIS Friday which startled the hell out of both of us. Obviously we *knew* it was coming...just thought we would have one more week to "get ready". As we were talking about it this evening, Roger said "its really thrown me for a loop. I was expecting next week. But really, what's the difference? They will say the radiation worked and reduced the size of the brain tumors, or they will say the radiation worked and completely obliterated the tumors, or they will say the radiation didn't do much and the tumors are still there. Regardless, we know - to some extent - what we are faced with." With tears in both of our eyes, we both uttered a low sigh and agreed, "yep, that's pretty much it." I'm sure we will continue to become more anxious as the week evaporates.
Next week will be meetings with the radiation oncologist as well as Roger's original oncologist. We'll see what is what then. And between the scan this Friday and the doctors' appointments next week, we will have a very long weekend.
Gotta go. I've got work-work to do yet this evening. More soon. love, angie
Monday, April 30, 2012
Saturday, April 28, 2012
Saturday, another not so hot day
Roger continues to feel poorly. I think he had moments today where he was "ok" but for the most part, pretty crummy. And, just absolutely exhausted. He didn't eat much in part because he didn't feel well and in part because he was at the boat with the mechanic (we are down in Vevay again for the weekend). It drives me batty that he won't stop and take the time to eat something of substance. I nag alot about eating but am not willing to nag all the time. He said he snacked a little. He needs to eat about 5-6 times a day....I think we are lucky if he eats 3 times a day....
We're hoping this weekend is the last in a while for coming down here to Vevay. Even though we both enjoy it. Roger is just worn coming down here. He said when he feels poorly, he wants to be home in his bed or on his sofa. The motor is completely reassembled. A good thing. They actually fired it up and Roger said it sounded good. Of course, it all can't just be that simple for the Wethingtons...there HAS to be something which goes wrong. In this case, something happened with the oil tube thingy (hell, I don't know WHAT it is, so you'll have to be satisfied with thingy). When the motor was started, it dumped 2 gallons of oil into the bottom of the boat. Ok, ick. What a mess. But that's not the issue. The concern is the motor was operated without the full 6 gallons of oil. I'm keeping my fingers crossed that everything is ok with the 4 gallons which remained.
After several bad days in a row, I'm hoping Roger has gotten them out of his system and that he'll have some good days to come.
He's asleep on the sofa. Time for me to settle for the evening as well... sorry I don't have much to post, there just isn't much to say.
Hope your weekend was good. hugs, a
We're hoping this weekend is the last in a while for coming down here to Vevay. Even though we both enjoy it. Roger is just worn coming down here. He said when he feels poorly, he wants to be home in his bed or on his sofa. The motor is completely reassembled. A good thing. They actually fired it up and Roger said it sounded good. Of course, it all can't just be that simple for the Wethingtons...there HAS to be something which goes wrong. In this case, something happened with the oil tube thingy (hell, I don't know WHAT it is, so you'll have to be satisfied with thingy). When the motor was started, it dumped 2 gallons of oil into the bottom of the boat. Ok, ick. What a mess. But that's not the issue. The concern is the motor was operated without the full 6 gallons of oil. I'm keeping my fingers crossed that everything is ok with the 4 gallons which remained.
After several bad days in a row, I'm hoping Roger has gotten them out of his system and that he'll have some good days to come.
He's asleep on the sofa. Time for me to settle for the evening as well... sorry I don't have much to post, there just isn't much to say.
Hope your weekend was good. hugs, a
Friday, April 27, 2012
Quick post.
Roger had a bad day. Yesterday was poor as well. Same pain and discomfort and exhaustion. Today, I think he was also emotionally worn from feeling poorly as well. And, can you blame him??? On days like today, its my job to try to trouble shoot and, a find a "solution" (though a true solution rarely exists). Trouble shooting includes: 1) have you taken your meds today?, 2) where are you on your pain patch, time to change?, 3) did you eat? what did you eat?, 4) did you over do it today? , 5) have you tried to walk around a little to see if you system needs to stretch a little?.....and the list goes on.
He has been sitting upright most of the evening in his "I'm in pain" position at the edge of the sofa or chair, head slumped down toward his chest....not a comfortable lounging position by any means...but for him, it helps him find some sort of peace. As he shifted around a couple times, I asked him "have you walked around at all??" Mind you, the wind is whipping outside and temps are dropping. I'm not suggesting a walk outside, but maybe around the house. He finally got up and has been padding around the floor, doing laps for about 5 minutes. Now, about 30 minutes later, he is asleep nestled into the corner of the sofa with 6 pillows and counting! At least he is comfortable. Or at least he is comfortable for now. Looks like another night sleeping in the family room. I've already moved the bucket close to the sofa...just in case he wakes refluxing (such an unsettling moment). I'll be chasing pillows and blankets for myself shortly.
We met with Roger's pain doctor today. Obviously as evidenced by the last couple posts, Roger hasn't felt all that hot. He desperately craves feeling good or conversely loathes feeling crappy. The pain doc has maintained all along, especially now the cancer is in such an advanced phase his job (the pain doc) is to try to make Roger comfortable and as painfree as possible. So, we continue to monkey around with Roger's meds. Today's solution is to up the immediate release "break-through" pain medicine as well as provide a new drug which is like an aerosol pain med. There are so many variables that you really don't want to change too many elements in the equation....you won't know what works or what doesn't work. So, we focused on the pain-control aspect. I'll circle back with the doctor about the fog and "the crazy" which Ambien causes.
So that's it. I'm totally pooped. The candle has burned from both ends to virtually nothing. Time for me to sleep.Offering up my standard apologies for typos, misspelling grammar faux paus, etc. xxooxx, a
Roger had a bad day. Yesterday was poor as well. Same pain and discomfort and exhaustion. Today, I think he was also emotionally worn from feeling poorly as well. And, can you blame him??? On days like today, its my job to try to trouble shoot and, a find a "solution" (though a true solution rarely exists). Trouble shooting includes: 1) have you taken your meds today?, 2) where are you on your pain patch, time to change?, 3) did you eat? what did you eat?, 4) did you over do it today? , 5) have you tried to walk around a little to see if you system needs to stretch a little?.....and the list goes on.
He has been sitting upright most of the evening in his "I'm in pain" position at the edge of the sofa or chair, head slumped down toward his chest....not a comfortable lounging position by any means...but for him, it helps him find some sort of peace. As he shifted around a couple times, I asked him "have you walked around at all??" Mind you, the wind is whipping outside and temps are dropping. I'm not suggesting a walk outside, but maybe around the house. He finally got up and has been padding around the floor, doing laps for about 5 minutes. Now, about 30 minutes later, he is asleep nestled into the corner of the sofa with 6 pillows and counting! At least he is comfortable. Or at least he is comfortable for now. Looks like another night sleeping in the family room. I've already moved the bucket close to the sofa...just in case he wakes refluxing (such an unsettling moment). I'll be chasing pillows and blankets for myself shortly.
We met with Roger's pain doctor today. Obviously as evidenced by the last couple posts, Roger hasn't felt all that hot. He desperately craves feeling good or conversely loathes feeling crappy. The pain doc has maintained all along, especially now the cancer is in such an advanced phase his job (the pain doc) is to try to make Roger comfortable and as painfree as possible. So, we continue to monkey around with Roger's meds. Today's solution is to up the immediate release "break-through" pain medicine as well as provide a new drug which is like an aerosol pain med. There are so many variables that you really don't want to change too many elements in the equation....you won't know what works or what doesn't work. So, we focused on the pain-control aspect. I'll circle back with the doctor about the fog and "the crazy" which Ambien causes.
So that's it. I'm totally pooped. The candle has burned from both ends to virtually nothing. Time for me to sleep.Offering up my standard apologies for typos, misspelling grammar faux paus, etc. xxooxx, a
Wednesday, April 25, 2012
I thought about the blog several times yesterday and several times today. I searched for what I was going to write. Maybe it s a good thing when I'm at a loss....nothing bad necessarily though implicitly that means nothing good too. This evening I asked Roger, "What should I blog about?" He responded, "I don't know. Say there is nothing to say". Well, thank you very much... been there done that. I told him, I don't even have any funnies to share. Does that mean nothing fun/amusing is happening? Maybe. Or the moments were so small and random. We shared a giggle but then nothing stuck in my brain. Since I am at a loss for words, I'll instead share random, not related thoughts.
DINING OUT: a luxury we took for granted. Before cancer, we used to eat out almost every night. Ate too much. Drank too much. It was a big, every day part of our life. Today, Roger muscled up the energy and effort to run an errand and then suggested going out for dinner. As we sat in the booth, waiting for our dinner to be served, he said "We used to go out every night. I used to be able to eat this whole basket of chips and drink margaritas..." I paused, munched a chip and said, "yes, we did. And we ate too much and drank too much. Life always changes and we are going to change with it. Now, think about all the money we are saving!"
PREDICTABILITY: a concept I never thought we would miss but we do. We miss predicting a "normal" day or at least predicting Roger would have a decent day or even a decent night sleep. The irony in this statement as a lot of you are probably thinking... there is NOTHING predictable about Roger Wethington. Mr. 'Don't Worry bout It' had this amazing ability to just roll with life. As many of you know, we are reluctant to make plans to get together for dinner, or drinks or anything because we just never know about how Roger is going to feel. Honestly, we are not hermits. You've come to learn...at a given moment, Roger's system can turn on him, twist him into a knot with pain.
TIME: a word or concept which is full of multiple meanings. Time is a good thing, time is a bad thing, time is an illusive thing. It flies, it stands still. When you are faced with a serious illness with an alleged timeline, the passage of time has new meaning. Remember when we were all kids and we couldn't wait to get "old"??? Now that we are "old" and faced with this serious situation, we both would give our right arm to go back to being young.
CAREFREE: We no longer have completely carefree moments. Think about those moments in your day - and I'm not here to say everyone has them - but I know we *used* to have perfectly, albeit small, carefree moments. I really don't feel like we have those any more. Everything now has a little more weight to it.
PEOPLE: people are and will always be the most valuable resource we all have. Family-people, friend-people, work-people, all people. You've heard me say repeatedly how important our people are to us. That's not just lip-service I truly mean it. And I mean people.... and that's a two-way concept....ok, maybe that doesn't make sense. What I'm trying to say is that its just not people WE rely ON but also, we hope, that our people know THEY can rely on US. I/We would drop everything for our people if you needed something....anything. I know some of you have hesitated to ask. Don't hesitate. Sometimes, a lot of times, it helps to distract us from our life by helping or simply being with others.
Roger's bday is coming up. May 10. He turns 52! Holyhell, a veritable junior old person (as Roger would say). The American Cancer Society has a marketing slogan about celebrating birthdays which we ALL need to do...regardless of cancer or for that matter life's trials and tribulations. More importantly, we all need to celebrate LIFE. So, celebrate your life (stop and be appreciative), celebrate the life of your loved ones and your friends (stop and appreciate them), and enjoy the moment. Try to find those moments of funny (which escape my memory lately) and revel in a simple laugh or small smile.
Sending a big virtual hug your way.
DINING OUT: a luxury we took for granted. Before cancer, we used to eat out almost every night. Ate too much. Drank too much. It was a big, every day part of our life. Today, Roger muscled up the energy and effort to run an errand and then suggested going out for dinner. As we sat in the booth, waiting for our dinner to be served, he said "We used to go out every night. I used to be able to eat this whole basket of chips and drink margaritas..." I paused, munched a chip and said, "yes, we did. And we ate too much and drank too much. Life always changes and we are going to change with it. Now, think about all the money we are saving!"
PREDICTABILITY: a concept I never thought we would miss but we do. We miss predicting a "normal" day or at least predicting Roger would have a decent day or even a decent night sleep. The irony in this statement as a lot of you are probably thinking... there is NOTHING predictable about Roger Wethington. Mr. 'Don't Worry bout It' had this amazing ability to just roll with life. As many of you know, we are reluctant to make plans to get together for dinner, or drinks or anything because we just never know about how Roger is going to feel. Honestly, we are not hermits. You've come to learn...at a given moment, Roger's system can turn on him, twist him into a knot with pain.
TIME: a word or concept which is full of multiple meanings. Time is a good thing, time is a bad thing, time is an illusive thing. It flies, it stands still. When you are faced with a serious illness with an alleged timeline, the passage of time has new meaning. Remember when we were all kids and we couldn't wait to get "old"??? Now that we are "old" and faced with this serious situation, we both would give our right arm to go back to being young.
CAREFREE: We no longer have completely carefree moments. Think about those moments in your day - and I'm not here to say everyone has them - but I know we *used* to have perfectly, albeit small, carefree moments. I really don't feel like we have those any more. Everything now has a little more weight to it.
PEOPLE: people are and will always be the most valuable resource we all have. Family-people, friend-people, work-people, all people. You've heard me say repeatedly how important our people are to us. That's not just lip-service I truly mean it. And I mean people.... and that's a two-way concept....ok, maybe that doesn't make sense. What I'm trying to say is that its just not people WE rely ON but also, we hope, that our people know THEY can rely on US. I/We would drop everything for our people if you needed something....anything. I know some of you have hesitated to ask. Don't hesitate. Sometimes, a lot of times, it helps to distract us from our life by helping or simply being with others.
Roger's bday is coming up. May 10. He turns 52! Holyhell, a veritable junior old person (as Roger would say). The American Cancer Society has a marketing slogan about celebrating birthdays which we ALL need to do...regardless of cancer or for that matter life's trials and tribulations. More importantly, we all need to celebrate LIFE. So, celebrate your life (stop and be appreciative), celebrate the life of your loved ones and your friends (stop and appreciate them), and enjoy the moment. Try to find those moments of funny (which escape my memory lately) and revel in a simple laugh or small smile.
Sending a big virtual hug your way.
Monday, April 23, 2012
Long days and short nights
Thats an oft repeated theme for me...for us. The days get longer (and I'm not talking about resetting your clock due to daylight savings) and the nights get shorter. I'm wide awake and working on work-work. I've got piles of home-work stuff needing attention but work-work has to take priority. Roger is crumpled into a pile of bones on the sofa across the room from me. I think we may just stay in the family room tonight and venture to real bed tomorrow. I just tried waking him and he is deep in Ambien fog so I'd rather not verbally and physically wrestle him to bed. While I'm a big fan of Ambien's effectiveness for helping Roger sleep, I'm NOT a fan of the complete fog and increased difficult, stubbornness it brings out of Roger. Especially when he doesn't really remember the next day. On Ambien, he gets spacey, confused, goofy, weird, and ...difficult. So I have this short window of opportunity to get him into bed before the full magic powers of Ambien kicks in. I think we'll be discussing this "wonder" drug with his pain management doctor later this week.
We were in southern Indiana for the weekend. The boat motor is very close to being completed. So, Roger wanted to be on hand incase the mechanic had questions about some of the parts Roger had previously taken off. It looks like one more weekend and then the moment of truth when the fire up the engine. Always a tense moment regardless of how talented the mechanic. And in this case, rebuilding the motor is literally like disassembling and reassembling a mini-cooper inside of a Ford Expedition. Literally the motor is about the size of the mini cooper and the motor compartment is about the size of the Expedition. So, we spent a chilly weekend down in Vevay Indiana. Mom and Dad came down for the day. Dad helped Roger with a few things on the boat and Mom and I hung back at the house and ran some errands.
We had a couple silly, funny moments this weekend which I told myself I was going to remember to post to the blog. And its either the late hour or maybe some of Roger's forgetfulness is rubbing off on me...for the life of me I can't remember what I was going to share. Hopefully it will come back to me.
Roger has been feeling so-so. He felt decent Friday but then crummy on Saturday and "ok" today. Up down up down. We've learned to ride the wave and look forward to the decent, ok, and even random good days whenever they present themselves. He commented this weekend he thinks he has increased tremors in his hands. He has had slight tremors for a while but now he thinks it has increased. That's not to say he can't hold a soda in his hand rather if he has nothing in his hands they shake slightly. Hard to say if this is aftermath from cancer or the fabulous (dripping with sarcasm) "treatment" we know as chemo and radiation. Sorry, I don't mean to suggest the treatment is bad per se....just that its sorta barbaric in that it beats the holy hell out of the poor patient. All this stuff...cancer, chemo, and radiation has beaten the holy hell out of Roger. I just bought him a new pair of pant and a new pair of shorts. We have gone from a waist of 36" at Roger's puggiest to now a very emaciated 30" waist. 235 lbs down to 134 lbs. I no longer even think about how close he is to my weight...vanity has left the building.
Ok, that's it. I really really gotta work on some work-work stuff. Oh and speaking of stuff. Nothing new on the sale of the boat. One of the two guys called. He wants to come see the boat. We are putting him off until the motor is done. Fate will be what fate is. Plus there is simply no reason to let the guy on the boat until its presentable.
Back to signing off. Hope all is well in your world. I wish our people endless laughter, love, and a general warm feeling of peace the same thing I wish for ourselves. All our love and more, a & a snoring r (just tried to spell check, damn blog program won't spell check - so....sorry for any misspellings, typos, or blah blah blah which doesn't make any sense. ta ta for now)
We were in southern Indiana for the weekend. The boat motor is very close to being completed. So, Roger wanted to be on hand incase the mechanic had questions about some of the parts Roger had previously taken off. It looks like one more weekend and then the moment of truth when the fire up the engine. Always a tense moment regardless of how talented the mechanic. And in this case, rebuilding the motor is literally like disassembling and reassembling a mini-cooper inside of a Ford Expedition. Literally the motor is about the size of the mini cooper and the motor compartment is about the size of the Expedition. So, we spent a chilly weekend down in Vevay Indiana. Mom and Dad came down for the day. Dad helped Roger with a few things on the boat and Mom and I hung back at the house and ran some errands.
We had a couple silly, funny moments this weekend which I told myself I was going to remember to post to the blog. And its either the late hour or maybe some of Roger's forgetfulness is rubbing off on me...for the life of me I can't remember what I was going to share. Hopefully it will come back to me.
Roger has been feeling so-so. He felt decent Friday but then crummy on Saturday and "ok" today. Up down up down. We've learned to ride the wave and look forward to the decent, ok, and even random good days whenever they present themselves. He commented this weekend he thinks he has increased tremors in his hands. He has had slight tremors for a while but now he thinks it has increased. That's not to say he can't hold a soda in his hand rather if he has nothing in his hands they shake slightly. Hard to say if this is aftermath from cancer or the fabulous (dripping with sarcasm) "treatment" we know as chemo and radiation. Sorry, I don't mean to suggest the treatment is bad per se....just that its sorta barbaric in that it beats the holy hell out of the poor patient. All this stuff...cancer, chemo, and radiation has beaten the holy hell out of Roger. I just bought him a new pair of pant and a new pair of shorts. We have gone from a waist of 36" at Roger's puggiest to now a very emaciated 30" waist. 235 lbs down to 134 lbs. I no longer even think about how close he is to my weight...vanity has left the building.
Ok, that's it. I really really gotta work on some work-work stuff. Oh and speaking of stuff. Nothing new on the sale of the boat. One of the two guys called. He wants to come see the boat. We are putting him off until the motor is done. Fate will be what fate is. Plus there is simply no reason to let the guy on the boat until its presentable.
Back to signing off. Hope all is well in your world. I wish our people endless laughter, love, and a general warm feeling of peace the same thing I wish for ourselves. All our love and more, a & a snoring r (just tried to spell check, damn blog program won't spell check - so....sorry for any misspellings, typos, or blah blah blah which doesn't make any sense. ta ta for now)
Thursday, April 19, 2012
Truth and honesty
When we started this blog....all the way back in 2009 (a million years ago), we committed to each other to be honest and to share AND as much as we could to try to focus on the good or the positive. In the process of being honest, we have revealed the raw underbelly of cancer. And the emotional impact. Having said that, we share almost in a matter of fact way. In our world, it "is what it is".
Today I got a small earful from Roger. Apparently a few people have called him and asked or suggested he is "losing his mind". Maybe that has been inferred from my sharing with you here in the blog he has recently lost words or lost a thought mid-stream. I need to set the record straight. Not only for him but for me. Roger is NOT losing his mind. Roger is NOT crazy. Roger is NOT losing it. He has moments where he may lose words or a thought but is perfectly right-minded...or at least as much as anyone can be under the given circumstances. Roger IS functional. He can get around and can do things. Maybe not as much as he used to but he can do things. I share with you the subtlties I see or hear or think I've witnessed. They are just that....subtlties. After hearing about this today, I am taken aback and wonder if I should taper my blogging or maybe even stop. My preference is to continue to share with you our days as they occur but need to caution you, rather beg you to NOT read more into the blog. AND for godsake, PLEASE don't suggest to Roger he is losing his mind. This evening he said, "I know I will probably eventually lose my mind or have issues but I'm not there YET." Soooooo, please don't ask him. Please don't challenge him. Hell, I'm his wife and I LOVE to be right...and I don't even get to correct him.
While we are on the subject of Roger (ok, so he's the subject of the whole blog, duh), and if I'm asking you for favors. I'll ask for a few more. 1) When you see or talk to Roger, please don't make his cancer all there is about him. He commented about that tonight as well. Thats not to say you can't ask him how he is or recognize how much this sucks. Roger simply doesn't want to be defined by his illness. If you previously talked to him about boats or cars or whatever before....than you should still be able to talk to him about that now. And, 2) If you spend time with Roger in person, please please please recognize he gets tired. He will try to stand and talk for hours on end but will start to lean against the wall or a car or whatever to support himself. He's just plain, old worn out and needs to sit down or may need to take a nap. I was talking about this with one of my girlfriends and she said I need to be honest with you and should post this to to blog. There may come times when I interrupt a conversation to suggest everyone sit down in the family room or Roger sit down, or go eat something or whatever. Yah, totally over protective of me....but I have come to know Roger and can read the warning signals.
Roger felt OK today. He did his own thing. I worked. He didn't take as many pain meds as he typically does on a daily basis. So, he considers it an OK day. He has been awake more this evening than I have seen in quite a while and has been engaged in conversation, so I too would consider it an OK day. We'll take OK in a heartbeat!
Happy Friday. Happy coming weekend. xxooxxoo~ r & a
Today I got a small earful from Roger. Apparently a few people have called him and asked or suggested he is "losing his mind". Maybe that has been inferred from my sharing with you here in the blog he has recently lost words or lost a thought mid-stream. I need to set the record straight. Not only for him but for me. Roger is NOT losing his mind. Roger is NOT crazy. Roger is NOT losing it. He has moments where he may lose words or a thought but is perfectly right-minded...or at least as much as anyone can be under the given circumstances. Roger IS functional. He can get around and can do things. Maybe not as much as he used to but he can do things. I share with you the subtlties I see or hear or think I've witnessed. They are just that....subtlties. After hearing about this today, I am taken aback and wonder if I should taper my blogging or maybe even stop. My preference is to continue to share with you our days as they occur but need to caution you, rather beg you to NOT read more into the blog. AND for godsake, PLEASE don't suggest to Roger he is losing his mind. This evening he said, "I know I will probably eventually lose my mind or have issues but I'm not there YET." Soooooo, please don't ask him. Please don't challenge him. Hell, I'm his wife and I LOVE to be right...and I don't even get to correct him.
While we are on the subject of Roger (ok, so he's the subject of the whole blog, duh), and if I'm asking you for favors. I'll ask for a few more. 1) When you see or talk to Roger, please don't make his cancer all there is about him. He commented about that tonight as well. Thats not to say you can't ask him how he is or recognize how much this sucks. Roger simply doesn't want to be defined by his illness. If you previously talked to him about boats or cars or whatever before....than you should still be able to talk to him about that now. And, 2) If you spend time with Roger in person, please please please recognize he gets tired. He will try to stand and talk for hours on end but will start to lean against the wall or a car or whatever to support himself. He's just plain, old worn out and needs to sit down or may need to take a nap. I was talking about this with one of my girlfriends and she said I need to be honest with you and should post this to to blog. There may come times when I interrupt a conversation to suggest everyone sit down in the family room or Roger sit down, or go eat something or whatever. Yah, totally over protective of me....but I have come to know Roger and can read the warning signals.
Roger felt OK today. He did his own thing. I worked. He didn't take as many pain meds as he typically does on a daily basis. So, he considers it an OK day. He has been awake more this evening than I have seen in quite a while and has been engaged in conversation, so I too would consider it an OK day. We'll take OK in a heartbeat!
Happy Friday. Happy coming weekend. xxooxxoo~ r & a
Tuesday, April 17, 2012
Stuff stuff stuff
We all have stuff. Some of us have more stuff than others. Some of us have different types of stuff than others. There is physical "stuff", mental "stuff", emotional "stuff" and probably even imaginary "stuff". We have lots and lots of stuff. Roger has tools, and cars, and boat type stuff. I have books, and computers, and clothes and shoes type stuff. Then of course we have a lot of other stuff. This morning we were faced with emotional stuff due to some physical stuff. (I just used the word stuff 13 times in one paragraph! Talent, huh?) Roger received a call first thing this morning from the woman who owns the marina where we have our boat docked. She was calling us because she had not one, but two potential buyers for our boat. Great, right???? Well, Yes and No. With the call and following the call came a torrent of emotions for us both. You see, we KNOW we need to sell the boat and have every intention of selling it....but we also were very much looking forward to enjoying it one last season.
You probably are saying, "So? Don't sell it. What's the big deal-e-o?" Yes, you are right. I said the same thing. Roger so aptly put it, "It could take us several years to sell our boat. And I don't want *you* to have to deal with that. Knowing how long this process could take...you don't just say 'no' to TWO potential buyers." Well, yah, sure. That all makes sense. Good rational thinking. It does NOT however make the hurt in my heart hurt any less. The boat is Roger. There is nothing which embodies him or his spirit as much as the boat. (our house would be a close second) The boat is "our" place. We have always gone there and stress just leaves. Its peaceful. Its...us.... Even as I type that, I also know its just STUFF. Right? Just stuff. Memories can be made anywhere. No matter how many times I say "its just stuff"....the thought of selling it now, makes me sad and makes Roger sad.
The day was relatively quiet for the most part. Roger had to rest a couple times. I worked remotely and I had a doctor's appt. As I was leaving for the appt, Roger called out "have fun". WHAT? What? A) its a doctor's appt...those are NEVER fun, and B) it was the crotch doctor (sorry, Dad. I mean OB/GYN...he thinks my sense of humor is a little off sometimes). Have fun? I promptly told Roger he wasn't funny and left in a huff.
Projects are ticking away. Eric has been helping with the physical projects (stuff) around the house and down at one of our rental properties. We think we MIGHT have a buyer for our second rental. It kinda feels like every time we cross something off the list....another item adds to the top. Roger and I both have different priority levels for the projects. I no sooner move something to the top of the list when I find Roger has de-prioritized it. Ugghhhhh. Classic male female....or rather classic husband wife.
Roger, has been, as is the case so many nights napping most of the evening this evening. When he wakes briefly, we've been talking about the boat, about the trip to England, about our cat, and then about nothing at all.
Roger's skin on his head is finally starting to look a little (LITTLE) less angry. He is now faced with the ever familiar itch after a really bad sunburn. We are still putting burn cream on his head 3 times a day. This morning when I was patting the cream all around his head, a bit of skin flaked off his head and fell onto his t-shirt. We both paused for a startled moment. He said, "oops, I think that was some of my head." I responded with an involuntary, "eeeewwwww." And then we both just giggled. Ok, so we're not "right" . What's new. We have to laugh at life's little moments even if those moments are a little creepy or wildly inappropriate. :-)
xxooxx, a & r
You probably are saying, "So? Don't sell it. What's the big deal-e-o?" Yes, you are right. I said the same thing. Roger so aptly put it, "It could take us several years to sell our boat. And I don't want *you* to have to deal with that. Knowing how long this process could take...you don't just say 'no' to TWO potential buyers." Well, yah, sure. That all makes sense. Good rational thinking. It does NOT however make the hurt in my heart hurt any less. The boat is Roger. There is nothing which embodies him or his spirit as much as the boat. (our house would be a close second) The boat is "our" place. We have always gone there and stress just leaves. Its peaceful. Its...us.... Even as I type that, I also know its just STUFF. Right? Just stuff. Memories can be made anywhere. No matter how many times I say "its just stuff"....the thought of selling it now, makes me sad and makes Roger sad.
The day was relatively quiet for the most part. Roger had to rest a couple times. I worked remotely and I had a doctor's appt. As I was leaving for the appt, Roger called out "have fun". WHAT? What? A) its a doctor's appt...those are NEVER fun, and B) it was the crotch doctor (sorry, Dad. I mean OB/GYN...he thinks my sense of humor is a little off sometimes). Have fun? I promptly told Roger he wasn't funny and left in a huff.
Projects are ticking away. Eric has been helping with the physical projects (stuff) around the house and down at one of our rental properties. We think we MIGHT have a buyer for our second rental. It kinda feels like every time we cross something off the list....another item adds to the top. Roger and I both have different priority levels for the projects. I no sooner move something to the top of the list when I find Roger has de-prioritized it. Ugghhhhh. Classic male female....or rather classic husband wife.
Roger, has been, as is the case so many nights napping most of the evening this evening. When he wakes briefly, we've been talking about the boat, about the trip to England, about our cat, and then about nothing at all.
Roger's skin on his head is finally starting to look a little (LITTLE) less angry. He is now faced with the ever familiar itch after a really bad sunburn. We are still putting burn cream on his head 3 times a day. This morning when I was patting the cream all around his head, a bit of skin flaked off his head and fell onto his t-shirt. We both paused for a startled moment. He said, "oops, I think that was some of my head." I responded with an involuntary, "eeeewwwww." And then we both just giggled. Ok, so we're not "right" . What's new. We have to laugh at life's little moments even if those moments are a little creepy or wildly inappropriate. :-)
xxooxx, a & r
Last night proved to be a pretty rotten night for Roger (and by default, for me). We went to bed around 12:30 a.m. He had Ambien on board and so he immediately fell asleep once he put his head down on the pillow. At 1:30, I woke to the sound of him wretching. Only this time, he wasn't in bed. He had ventured downstairs and was standing at the sink in the kitchen. Usually, when he feels like he is asperating we grab a bucket by the bed and he is able to stay in bed. Last night, I think he was also in a deep Ambien fog. Somehow he made it downstairs. When I came downstairs, he was muttering he wasn't sure if he had dreamt he was choking or if he really was... or what was going on. So the next 1.5 hours was spent with him hovered over the sink and coughing and trying to clear his voice. He tried taking a liquid medicine we have that is supposed to coat his throat and stomach and then, in his Ambien fog insisted on eating a couple cookies. I tried to argue with him. Adding more food to his system wasn't necessarily the answer. Unfortunately, Roger is pretty stubborn without Ambien....with Ambien he REALLY is stubborn.
Once he and his system calmed down, we moved our operation to the family room. He got setttled in his recliner. I went upstairs to chase pillows, and blankets. Got him all nestled into his chair and then I nestled into the sofa across from him. I think we officially dozed off to sleep again around 3:30 or 4:00. He was pretty rattled this morning as you can imagine. Hell, so was I. And then this morning turned out to be a repeat of yesterday morning...he had breakfast and then had pain and discomfort so he went back upstairs to try laying down in bed. Eventually, around noon, he got up and got moving. He needed to go to the karting center to work with them on a couple things.
This evening when I got home from work, I found him resting in his chair again. When I quizzed him, he said he said he was tired and worn out and had just done too much standing and talking and ...well just done too much. So, you can imagine my concern for our trip to England in May. This was one afternoon....I can't imagine traveling to another country....having said that, he wants to go...so we are going.
And so, tonight like many nights has been very quiet. Roger has been sleeping in his chair. His poor neck doesn't seem to be able to support the weight of his head so he is drooped over. I wrestle with waking him to better support his head verses leaving him asleep. Tonight, after such a rough night last night, I have elected to let him keep sleeping. His Ambien is fully in his system...he hasn't stirred once with the tapping of my fingers on the keyboard or the random sounds of evening.
The cat just jumped up to snuggle with Roger. So, he just woke up briefly. The cats seem to be a lot more clingy lately. I think they must sense Roger needs some snuggle time. I need to teach our six toed cat how to give Roger foot rubs...especially on the days when he has stinky feet.
As is often the case at this time of day/night, I'm going to nudge my husband awake and guide him up to bed. Cross your fingers we make it a full evening in bed. love and hugs to all. (sorry for any typos or misspelling, I'm not even going to try to proof).
Once he and his system calmed down, we moved our operation to the family room. He got setttled in his recliner. I went upstairs to chase pillows, and blankets. Got him all nestled into his chair and then I nestled into the sofa across from him. I think we officially dozed off to sleep again around 3:30 or 4:00. He was pretty rattled this morning as you can imagine. Hell, so was I. And then this morning turned out to be a repeat of yesterday morning...he had breakfast and then had pain and discomfort so he went back upstairs to try laying down in bed. Eventually, around noon, he got up and got moving. He needed to go to the karting center to work with them on a couple things.
This evening when I got home from work, I found him resting in his chair again. When I quizzed him, he said he said he was tired and worn out and had just done too much standing and talking and ...well just done too much. So, you can imagine my concern for our trip to England in May. This was one afternoon....I can't imagine traveling to another country....having said that, he wants to go...so we are going.
And so, tonight like many nights has been very quiet. Roger has been sleeping in his chair. His poor neck doesn't seem to be able to support the weight of his head so he is drooped over. I wrestle with waking him to better support his head verses leaving him asleep. Tonight, after such a rough night last night, I have elected to let him keep sleeping. His Ambien is fully in his system...he hasn't stirred once with the tapping of my fingers on the keyboard or the random sounds of evening.
The cat just jumped up to snuggle with Roger. So, he just woke up briefly. The cats seem to be a lot more clingy lately. I think they must sense Roger needs some snuggle time. I need to teach our six toed cat how to give Roger foot rubs...especially on the days when he has stinky feet.
As is often the case at this time of day/night, I'm going to nudge my husband awake and guide him up to bed. Cross your fingers we make it a full evening in bed. love and hugs to all. (sorry for any typos or misspelling, I'm not even going to try to proof).
Monday, April 16, 2012
I'm at a loss for words tonight. Just feeling a little overwhelmed with life. Tons of stuff to do. A fragile husband. And life which just keeps ticking away. I think I'm feeling a little more melancholy (right word?) than usual. I think because I learned a girl friend's father passed away this morning unexpectedly. How quickly life changes. There are no magic words. All I could say is "we're here for you"... and then my way of trying to fix what which is un-fixable....food. So I dashed to the grocery and purchased everything I could find to make a care package. Nope, it doesn't fix a thing. Nope, it doesn't take away the pain. Its just our small insignificant way of being there.
Roger had a day of ups and downs beyond the emotional gut punch of our friend's loss. He got up this morning and seemed to be ok. Watched Sunday Morning on CBS and then made some eggs and toast for breakfast. Sounds innocent enough, right? Well, we just can't seem to accurately predict what will send his system into fits. Today, it was either eggs or toast or both. He ended up having to go back to bed to sleep for a couple hours. Stomach and system in knots. After taking some painkillers and sleeping, he felt better. We saw my parents briefly in the afternoon, and then Roger worked on a couple things in the garage. By the end of the evening, he was feeling "ok" . We went for a walk around the neighborhood (it was gorgeous weather this evening...if nothing else). Basically up/down/up/down....basically cancer.
So our travel plans are firming up. It looks like we are going to England with Roger's mom and sister for about 5 days. Roger's mom is from England - so she is a tremendous knowledge base for the area. We were toying with going to Monaco at the end of the England holiday. Apparently the Formula 1 Grand Prix will be running at the end of that week. Roger is a huge fan of F-1 racing (I enjoy it...just not a HUGE fan). Well after loads of research we have come to the conclusion the trip would just be "too much"...too much energy, too much chaos, and a ton of $$. Instead, I think we do the first part of the trip in England with his Mom and sister and then will reserve the Monaco portion of the funds toward renting a large boat with a crew and go island hopping somewhere warm. Roger's first love (nope, not me) is the water and boating. After wrestling with the two ideas, we both agree the island hopping is probably the better choice of the two.
In June, we'll be doing a mini-family reunion on my side of the family. Plans are to do it in southern IN and also use our boat. Should be good fun. I love that area, we love to be on the boat, and love to be with family. All good stuff.
I had a totally unsettling moment when walking with Roger today. He completely lost his words, the thought he had been expressing. Just all gone. I waited and waited and waited while he searched for the thought, searched for the words. When nothing would come out, I quietly referenced the conversation we were having and where he left off....and then the conversation resumed. He did that a couple times today. I'm hoping this is just radiation aftermath still lingering and that he will continue to "come back'.
As usual, its late. Sunday evening on the threshold of Monday morning. New week. And, as usual, we have tons to do. So, I'm going to start the 'go to bed' dance with my skinny-mini husband.
Love your people. Appreciate your people. And live for the moment. ~ a & r
Roger had a day of ups and downs beyond the emotional gut punch of our friend's loss. He got up this morning and seemed to be ok. Watched Sunday Morning on CBS and then made some eggs and toast for breakfast. Sounds innocent enough, right? Well, we just can't seem to accurately predict what will send his system into fits. Today, it was either eggs or toast or both. He ended up having to go back to bed to sleep for a couple hours. Stomach and system in knots. After taking some painkillers and sleeping, he felt better. We saw my parents briefly in the afternoon, and then Roger worked on a couple things in the garage. By the end of the evening, he was feeling "ok" . We went for a walk around the neighborhood (it was gorgeous weather this evening...if nothing else). Basically up/down/up/down....basically cancer.
So our travel plans are firming up. It looks like we are going to England with Roger's mom and sister for about 5 days. Roger's mom is from England - so she is a tremendous knowledge base for the area. We were toying with going to Monaco at the end of the England holiday. Apparently the Formula 1 Grand Prix will be running at the end of that week. Roger is a huge fan of F-1 racing (I enjoy it...just not a HUGE fan). Well after loads of research we have come to the conclusion the trip would just be "too much"...too much energy, too much chaos, and a ton of $$. Instead, I think we do the first part of the trip in England with his Mom and sister and then will reserve the Monaco portion of the funds toward renting a large boat with a crew and go island hopping somewhere warm. Roger's first love (nope, not me) is the water and boating. After wrestling with the two ideas, we both agree the island hopping is probably the better choice of the two.
In June, we'll be doing a mini-family reunion on my side of the family. Plans are to do it in southern IN and also use our boat. Should be good fun. I love that area, we love to be on the boat, and love to be with family. All good stuff.
I had a totally unsettling moment when walking with Roger today. He completely lost his words, the thought he had been expressing. Just all gone. I waited and waited and waited while he searched for the thought, searched for the words. When nothing would come out, I quietly referenced the conversation we were having and where he left off....and then the conversation resumed. He did that a couple times today. I'm hoping this is just radiation aftermath still lingering and that he will continue to "come back'.
As usual, its late. Sunday evening on the threshold of Monday morning. New week. And, as usual, we have tons to do. So, I'm going to start the 'go to bed' dance with my skinny-mini husband.
Love your people. Appreciate your people. And live for the moment. ~ a & r
Saturday, April 14, 2012
Never enough time. Never enough energy
We went to the boat for one night. Worked on painting projects down there and then came home the next day. Roger has been pretty wiped out. And, for some reason so have I. Maybe its a dreary rainy Saturday which has done this. And as has been the case on so many other days/nights, when Roger is worn out its pretty darn quiet around the house. He naps on and off and I try to do projects around the house. Today was an off day for some reason. Hoping tomorrow is much more focused and energized for me. For Roger, taking it easy isn't such a bad thing.
Boat motor is getting very close. The mechanic should have one more weekend to fully assemble the boat motor. And then we are ready for warm weather and relaxation!!
We're trying to figure out some trips. The proverbial Bucket List. I hate the name and the concept of a "Bucket List". Instead would prefer to think of the trips as exactly that....trips....doing stuff we've wanted to do. Nothing more, nothing less. Obviously we are also trying to walk a fine line of what is too much of a trip for Roger physically. Everything about life seems to be a balancing act. That however has always been the case, cancer or no cancer. Life is definitely about balancing.
Roger has had a couple headaches recently which naturally leaves us both wondering, " is this just a regular headache? is this something more? should we be calling the doctor's office?". Everyday Roger tries to tell me if there is something "odd" he is feeling and I try to capture it in a calendar. Just in case. The headache is one example. Another example is that he still has numbness in his feet. He ends up needing his feet rubbed in the middle of the night to get the blood flowing again. Sleep is always in 3-4 hour segments at most. And with that said, I think we are going to dance our way upstairs to bed.
xxooxx, a & r
Boat motor is getting very close. The mechanic should have one more weekend to fully assemble the boat motor. And then we are ready for warm weather and relaxation!!
We're trying to figure out some trips. The proverbial Bucket List. I hate the name and the concept of a "Bucket List". Instead would prefer to think of the trips as exactly that....trips....doing stuff we've wanted to do. Nothing more, nothing less. Obviously we are also trying to walk a fine line of what is too much of a trip for Roger physically. Everything about life seems to be a balancing act. That however has always been the case, cancer or no cancer. Life is definitely about balancing.
Roger has had a couple headaches recently which naturally leaves us both wondering, " is this just a regular headache? is this something more? should we be calling the doctor's office?". Everyday Roger tries to tell me if there is something "odd" he is feeling and I try to capture it in a calendar. Just in case. The headache is one example. Another example is that he still has numbness in his feet. He ends up needing his feet rubbed in the middle of the night to get the blood flowing again. Sleep is always in 3-4 hour segments at most. And with that said, I think we are going to dance our way upstairs to bed.
xxooxx, a & r
Tuesday, April 10, 2012
Not much for you today. Yesterday was doctor day. We met with Dr Birhiray the oncologist. It was an OK meeting. You know...not good, not bad... just OK. As is the case with every meeting with Dr B, Roger's blood is drawn and vitals are taken. Initial blood test results were ok (we didn't have full lab results). Roger's weight is down again. Now 136. For a guy who is 6'2"...that means he's all bones and skin. Literally all bones and skin.
The meeting was more just a "how's it going? how was radiation? how have you been feeling?" meeting. So we chatted about the process and how Roger has been feeling. The exhaustion being the first and most obvious symptom. Then we discussed Roger's radiation "sunburn". Roger kept telling the doctor and the various nurses that he looked good with the suntan. Um, suntan??? He *does* have a lot of color...along with a lot of radiation sunburns. (his skin is very angry) The appointment concluded with us agreeing to meet again in a month and at that time for Roger to have another MRI from his pelvis to the top of his head. The hope is that all or at least some of the tumors are gone or are at minimum reduced in size. Once we have controlled the tumors in the brain, then we will look back at the tumors in his lungs and lymph nodes. Its all pretty overwhelming. So, as previously mentioned, we try to focus on one day at a time. After the scan, we will meet with the oncologist and the radiation oncologist to determine how Roger is doing and what if any next steps are appropriate.
So, we are hoping with each passing week, Roger will get a little more energy and return a little bit more to his old self. Apparently, radiation takes 4-6 weeks to exit your system. As for the radiation burns, I've been putting radiation 1st and 2nd degree burn cream on him 3 times a day. We are finding less bits of hair on the furniture, in bed or in the shower. Could be because the radiation is slowly being to exit...or could be because my hubby doesn't have that much hair to begin with. I'll have to dig out one of his old childhood photos. You will NOT recognize him....he literally, no exaggeration, has a full Afro of curly red hair. NO EXAGGERATION.
Well, its that time of evening again. Gotta wake my hubby up and encourage him to make the nightly trek upstairs to bed while avoiding a veritable obstacle course of shoes, socks, and snoozing felines.
Hope your week is off to a great start. a & r
The meeting was more just a "how's it going? how was radiation? how have you been feeling?" meeting. So we chatted about the process and how Roger has been feeling. The exhaustion being the first and most obvious symptom. Then we discussed Roger's radiation "sunburn". Roger kept telling the doctor and the various nurses that he looked good with the suntan. Um, suntan??? He *does* have a lot of color...along with a lot of radiation sunburns. (his skin is very angry) The appointment concluded with us agreeing to meet again in a month and at that time for Roger to have another MRI from his pelvis to the top of his head. The hope is that all or at least some of the tumors are gone or are at minimum reduced in size. Once we have controlled the tumors in the brain, then we will look back at the tumors in his lungs and lymph nodes. Its all pretty overwhelming. So, as previously mentioned, we try to focus on one day at a time. After the scan, we will meet with the oncologist and the radiation oncologist to determine how Roger is doing and what if any next steps are appropriate.
So, we are hoping with each passing week, Roger will get a little more energy and return a little bit more to his old self. Apparently, radiation takes 4-6 weeks to exit your system. As for the radiation burns, I've been putting radiation 1st and 2nd degree burn cream on him 3 times a day. We are finding less bits of hair on the furniture, in bed or in the shower. Could be because the radiation is slowly being to exit...or could be because my hubby doesn't have that much hair to begin with. I'll have to dig out one of his old childhood photos. You will NOT recognize him....he literally, no exaggeration, has a full Afro of curly red hair. NO EXAGGERATION.
Well, its that time of evening again. Gotta wake my hubby up and encourage him to make the nightly trek upstairs to bed while avoiding a veritable obstacle course of shoes, socks, and snoozing felines.
Hope your week is off to a great start. a & r
Sunday, April 8, 2012
Happy bunny day
Quick post with bits of info.
We ended up at my folks house back in Indy this afternoon for bunny day. Had a bunch of laughs, food, and more laughs. Attached are photos of the family: my brother and sister-in-law and 4 kids and my mom and dad...and of course...my most favorite person (who also makes me craziest). The serious photo is so NOT any of us. The crazy whacky photo is SOOOOOO us.
Roger is doing ok. He is pooped (understatement) and his poor poor poor skin on his head is angry. Little blisters from the "sunburn" of radiation. We have this 1st and 2nd degree burn cream for radiation patients that we've started putting on his skin. This evening as I was dabbing it on his skin, all around his head, I noticed on the fabric of his chair tufts of hair...sigh....hurts my heart to even think of it let alone see the hair. Again, its not cuz Roger has this big ol' head of hair but more what it represents....and as I said previously, I love love to run my hand over his head to feel the peach fuzz. Anyway, that's all I can say about that.
I told Roger we needed to go to bed early tonight. Too many late nights and we both are worn out. As I post here, I notice the time ticking away (so much for early to bed) and as I look over the top of my laptop, I see my tiny, fragile husband slumping over asleep. So, I'm going to sign off for now. Will post again tomorrow after our meeting with the doctor.
Hope you all ate the ears off your chocolate bunnies and had a peaceful happy day. hugs, a
Went to southern IN for the weekend. Ended up staying Friday and Saturday evening. Roger met the the mechanic at the boat Saturday morning. I stayed at my 'rent's river house and worked on tax stuff (yep, still doing that crap). Roger over did it....big time. Stayed at the boat until about 7pm and really just overdid it. Its not so much that he's lift heavy stuff but more standing too long, bent over too much, simply doing too much. And as mentioned before there is a fine line with what I can say and what I can't say (i.e. nag nag nag). He's a grown up. Right? Well, not always. Anyway, he over did it and basically had to load up on meds and then slept the evening away. Which was fine because I had plenty of work to do.
Boat motor is progressing well. Very well. Roger is super pleased. Next weekend is turkey hunting weekend (whatever that means) so mechanic wont be down. So motor won't be done until the following weekend most likely. Still record fast compared to the first motor so its all good unless you are a turkey. AND, we aren't even close to summer yet, soooooo its fine the motor isnt done yet.
We ended up at my folks house back in Indy this afternoon for bunny day. Had a bunch of laughs, food, and more laughs. Attached are photos of the family: my brother and sister-in-law and 4 kids and my mom and dad...and of course...my most favorite person (who also makes me craziest). The serious photo is so NOT any of us. The crazy whacky photo is SOOOOOO us. Tomorrow we meet with Roger's oncologist, Dr. Birhiray. He has been the "quarterback" throughout this whole journey. I think the meeting will be to touch base and see how Roger weathered radiation, schedule the next scan and then talk next steps. I'm anxious and numb all at the same time. Is that possible?
Roger is doing ok. He is pooped (understatement) and his poor poor poor skin on his head is angry. Little blisters from the "sunburn" of radiation. We have this 1st and 2nd degree burn cream for radiation patients that we've started putting on his skin. This evening as I was dabbing it on his skin, all around his head, I noticed on the fabric of his chair tufts of hair...sigh....hurts my heart to even think of it let alone see the hair. Again, its not cuz Roger has this big ol' head of hair but more what it represents....and as I said previously, I love love to run my hand over his head to feel the peach fuzz. Anyway, that's all I can say about that.
I told Roger we needed to go to bed early tonight. Too many late nights and we both are worn out. As I post here, I notice the time ticking away (so much for early to bed) and as I look over the top of my laptop, I see my tiny, fragile husband slumping over asleep. So, I'm going to sign off for now. Will post again tomorrow after our meeting with the doctor.
Hope you all ate the ears off your chocolate bunnies and had a peaceful happy day. hugs, a
Saturday, April 7, 2012
FRIDAY
Yep, you got it. Friday. Good Friday? That's what the calendar says. Quite frankly, I used to think ANY Friday was a good Friday. But today was a good Friday in that it marked the last day of radiation for Roger. He was given the option of bringing home his mask but elected not to saying he didn't need a reminder of what he has done for the past three weeks. Plus, honestly, its just pretty damn creepy. He took a picture with his phone. I'm attaching it here. You'll see a profile view with his nose pointing to the left side of the picture. The mask fit so tightly you can't even talk. The white "ring" is screwed down to a board so that you cannot move. At all. There is also a strip of tape surrounding the mask with a line hand drawn. That is radiation boundary. The radiation then beamed all the area within the taped off area towards the back of the head. All the way around the head and under the head but not on his face. Just not right on so many levels. I usually try to appreciate the marvel of modern medicine but this eludes me. I have an anxiety attack whenever I think about it. Roger truly is my hero for enduring all of this all with the hope of getting better initially, and now with the hope of staving off pain, discomfort, and any accelerator to the end of a timeline.So, I re-read yesterday's post and am left a little speechless after the whole of today. Remember, yesterday I referenced the man in the wheelchair with missing patches of hair. Well, I must have been foreshadowing...foreshadowing unbeknownst to me. Roger took a shower this morning prior to us leaving to go to the radiation center. He came out of the bathroom with a towel in hand and said "well, looks like the symptom of hair falling out is starting to happen" And there on the towel were little clumps of hair. And, at the back of his head there were two bald patches...just like the man yesterday. Omygod. omygod. omygod. My heart stopped, tears rushed to my eyes. I know its totally silly and Roger gave me such a hard time. Its not like he has LOTS of hair anyway...but what little he has I love to rub, kinda like peach fuzz. And, beyond that the emotional impact of all this which I try to keep buried deep deep in my soul just erupted. As the day has progressed, there seemed to be more of these patches appearing. I mentioned that to Roger this evening and he said, "oh yah, look." And then started grabbing little tufts of hair and pulling gently. I told him he had to stop because he was going to make me cry again. Roger decided enough of all this. We used the trimmers and removed what little hair remained. *sigh*
High spots of the week: Yesterday, Roger's glass teacher, Yuri, brought over the most beautiful, amazing bowl she made for him.(out of this world gorgeous) Today, we had breakfast with Roger's friend Steve who we hadn't seen since last year. Always good to catch up with friends even if for short visits! As mentioned at the start of this post, today was the last day of radiation. Then we knocked out a few projects. I met with a landscaper about doing some yard work (trying to simplify things for us). And then we drove south to Vevay, IN. I think we're just staying the night and then headed back home tomorrow. The diesel mechanic is supposed to be at the boat tomorrow morning early to start the motor rebuild process. Roger gets a great deal of comfort knowing the projects on the boat are getting done and that the boat is getting closer to a point when we can sell. I've told him we don't need to worry about selling it now and that I can take care of that whenever necessary...later. Since he is soooo happy on the boat, I think its silly to sell when we have a perfectly good spring/summer season coming. I think we should enjoy it while we can.
As usually, the clock ticks away in the back ground. Time to turn Jay Leno off and convince my hubby to lay his worn out body down to grab what little sleep we can.
Should there be any question in your mind, I simply adore...nope...crazy love my husband and can't imagine a world without this amazing, creative, talented person. Every moment is precious. I have such a renewed appreciation of him and quite frankly of all the amazing people in our life. ~ a
Thursday, April 5, 2012
One to go
13 treatments down and one to go. And we are both pretty darn happy! Though we have to say, going to the radiation center has helped us with our continued effort at focus. We've seen several people getting radiation who were much more fragile than Roger. Many were unable to walk on their own. It gives you pause. Today we observed a man, slightly older than Roger, in a wheel chair with part of his hair missing and a very large scar circling a large part of his head. He seemed confused and couldn't communicate very well. As we were walking out of the center, we both commented how "lucky" Roger was in this respect. He is mobile, can communicate, etc. A little perspective is a good thing sometimes. We discussed how its all bad. There are just differing degrees of bad.
The day was decent all things considered. Roger's disposition was actually pretty good. And now, as he has been for the last 3.5 hours Roger is snoozing in his chair. I've tried to rustle him to go to bed. Each time I've been met with "No, I'm watching TV"....hmmmm, through your closed eyelids? Oh well. So, I'll try again.
I don't really have much for you today. It wasn't a bad day, it wasn't a good day. It was just Thursday. And a very quiet Thursday evening.
More tomorrow. ~a & r
The day was decent all things considered. Roger's disposition was actually pretty good. And now, as he has been for the last 3.5 hours Roger is snoozing in his chair. I've tried to rustle him to go to bed. Each time I've been met with "No, I'm watching TV"....hmmmm, through your closed eyelids? Oh well. So, I'll try again.
I don't really have much for you today. It wasn't a bad day, it wasn't a good day. It was just Thursday. And a very quiet Thursday evening.
More tomorrow. ~a & r
It was a pretty quiet day start to finish. Radiation was mid-day. We went to a late breakfast, then to radiation, then back home. Roger immediately went up to bed to sleep. Said his stomach was bothering him and he was achy, and he was exhausted. So I ran errands. One of which was buying clothes to fit him. We've gone from a 36" waist (235 lbs) when we started this journey to now a 30" or 32" waist (138 lbs). I'm pretty sure my jeans would fall off him....which would be devastating on multiple fronts...my husband should NOT be wearing my jeans...my underwear yes, my jeans... NO. JUST KIDDING KIDDING!!!! A little inappropriate humor just to see if you are awake.
Roger tinkered a little with a couple small things this evening but quickly sank back into his recliner.
Two more radiation treatments to go. Then, wait and see. We have a meeting with the oncologist on Monday to discuss how radiation went and then to discuss what's next. There will be a scan in a couple months to see how well the radiation worked. We are supposed to call the doctor or get in to see him if anything "unusual" happens between now and the scan. Unusual?? This whole bloody thing is "unusual"....putting it mildly. Poor Roger! I'll be a freakin' watch dog hovering over him watching for the "unusual". Again...poor Roger.
Disability application is almost done. I'm doing a final proof and off it should go.
Taxes?...well we may have to file for an extension. I have a call into our accountant to check his workload. I'm guessing due to our late start and the current date... extension may be the way to go.
One of our friends asked us, "how do you deal with all this" . We both replied independently "You just deal with it. One day at a time." There is no handbook, no playbook. It never gets "ok". It never gets "easy". The proverbial "it" just moves further back in the line we call life. Always there....just a little further back. And, some days it rushes forward to smack you in the face. Other days its in the background. Back to what I call a suspended reality. That's our world. Suspended reality. Its up to us, each of us, to find the joy. The joy in the moment, the day, hopefully the week. At minimum, the joy of the moment. I try to make sure there are stupid silly moments we can laugh about, hopefully every day. Laughter doesn't fix. It just coats the raw edges a little. Additionally to help soften the raw edges there needs to be human touch. Don't worry, no x-rated stuff. That's not in the picture. Human touch, genuine, pure, soft, tender touch. A hug. Holding hands. A touch on the arm when you walk out of the room. Laughter with a grab of a friend's shoulder. You get the picture. Roger and I both find ourselves responding to anyone who asks if we need a hug, "Everyone needs a hug. No matter what the circumstances. Everyone needs a hug". Maybe a little too cheesy for most people, but we truly believe it.
So, with that we are sending all of you a big virtual hug. g'nite. luv, a + r
Roger tinkered a little with a couple small things this evening but quickly sank back into his recliner.
Two more radiation treatments to go. Then, wait and see. We have a meeting with the oncologist on Monday to discuss how radiation went and then to discuss what's next. There will be a scan in a couple months to see how well the radiation worked. We are supposed to call the doctor or get in to see him if anything "unusual" happens between now and the scan. Unusual?? This whole bloody thing is "unusual"....putting it mildly. Poor Roger! I'll be a freakin' watch dog hovering over him watching for the "unusual". Again...poor Roger.
Disability application is almost done. I'm doing a final proof and off it should go.
Taxes?...well we may have to file for an extension. I have a call into our accountant to check his workload. I'm guessing due to our late start and the current date... extension may be the way to go.
One of our friends asked us, "how do you deal with all this" . We both replied independently "You just deal with it. One day at a time." There is no handbook, no playbook. It never gets "ok". It never gets "easy". The proverbial "it" just moves further back in the line we call life. Always there....just a little further back. And, some days it rushes forward to smack you in the face. Other days its in the background. Back to what I call a suspended reality. That's our world. Suspended reality. Its up to us, each of us, to find the joy. The joy in the moment, the day, hopefully the week. At minimum, the joy of the moment. I try to make sure there are stupid silly moments we can laugh about, hopefully every day. Laughter doesn't fix. It just coats the raw edges a little. Additionally to help soften the raw edges there needs to be human touch. Don't worry, no x-rated stuff. That's not in the picture. Human touch, genuine, pure, soft, tender touch. A hug. Holding hands. A touch on the arm when you walk out of the room. Laughter with a grab of a friend's shoulder. You get the picture. Roger and I both find ourselves responding to anyone who asks if we need a hug, "Everyone needs a hug. No matter what the circumstances. Everyone needs a hug". Maybe a little too cheesy for most people, but we truly believe it.
So, with that we are sending all of you a big virtual hug. g'nite. luv, a + r
Tuesday, April 3, 2012
Too pooped to post much tonight. Roger had treatment today. The day was tough on him physically. He said he had to vomit mid morning, was tired and run down, and just didn't have much of a good day. He has been sleeping since I got home this evening. Dozing on and off. Woke up enough to eat dinner and then was back down again. I'm getting ready to wake him and guide him up to bed.
Hugs to all. More posts soon when I'm not quite so pooped. Love, a
Hugs to all. More posts soon when I'm not quite so pooped. Love, a
Losing track of time
Roger and I both seem to have a complete inability to keep track of time with the exception of radiation appointments. Maybe its intentional on our parts? Hard to say. Anyway, our evidence: 1) we have a flexible spending account for medical expenses (thank heavens!), the deadline for 2011 claims was March 31....guess who didn't realize it was the end of March until Friday (the 30th!), and 2) What follows March the 31st? Um APRIL 1...or more importantly April 15th,,,,tax day!!!!!!!!!!!!! Holy hell. So Friday night and Saturday all day was receipt chasing, form filing, scanning and emailing to the insurance company of little bitty drug store receipts, doctor's office receipts/bills, and hospital bills. In a word....sucks. And now its tax receipt time. Fortunately its April 2nd (read that with a tone of HUGE sarcasm, please). So, I have loads of time to sort, organize, and total receipts.
UGGGGGGGHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Next, all of you out there ....I need to ask a HUGE HUGE favor. Please screen all movies for us and send us your list of "dos and don'ts" . In particular, the don'ts, please. We innocently purchased a movie on pay per view Friday evening as I was busy sorting receipts. Roger did the picking. He picked one of those movies nominated for loads of awards, and I think it even won. George Clooney's The Descendants. UM, BIG MISTAKE. BIG BIG MISTAKE. Hello???? We both thought it was a family movie, about a wife cheating on a husband, and the family dysfunction which follows. Ok, not rip roaring funny but it was supposed to have cute moments. Well, Mr and Mrs Oblivious, the Wethingtons, missed the important movie detail that one of the spouses was injured and in a coma on life support. (sorry if I just did a spoiler for those of you who haven't seen the movie). NOT the uplifting laugh alot movie we needed. Must be why I gravitate to the sci-fi or "magic" movies. Guess, we'll stick to car restoration tv programs. zzzzzzzzz, can you hear me snoring now?
We drove down to the river again this weekend. Left Sunday morning. Saw my parents briefly at their river house. They were headed back to Indy and we were moving into their river house. We then went to the boat Sunday afternoon and worked into the evening. When we finally left for the evening (we stayed way to late and Roger totally over did it), Roger said with a sigh of relief "I feel so much better that we came down here". We also managed to sell off a few things this weekend. Sold a couple jet skis, sold a law mower, and sold one of the automobile projects, the Mercedes. yea. Yea. YEA! We both actually finally felt like we accomplished something. AND we continued to cross things off the list.
A girlfriend of mine who stopped by the house late last week, she was trying to encourage Roger to take it easy. and he said: "I like to tinker and do my projects. It brings makes me happy. I can't do as much as I did...but I can do a few things. And, I can't be happy holding hands and walking on the beach until I get some of these projects completed and gone". So, for now that's the focus.
He is definitely weaker, more tired, and seems to get a little confused here and there. I have been driving us most of the time. He is fine with small trips to run errands but doesn't seem to have the necessary focus for long drives. I witnessed that this morning when we were driving back to Indy from Southern IN. Roger decided to drive. I noticed he was periodically swerving a little left of the center line or onto the shoulder. It happened a couple times and I finally asked. He said he just didn't have the focus for long trips and even was dozing off. Ok. I will now be the official driver for the longer trips and we will watch the shorter trips. We only have this week of radiation to go - 5 days this week - and then recovery. I expect he'll be very tired, spacey, and out of it this week and next and then will slowly come back.
Radiation is starting to take its toll on Roger's skin. His skin around his head is starting to have a very ruddy reddish tint, link a sunburn. His hair is starting to fall out. We knew both symptoms would happen from the radiation. Roger has started to wear this cool hat my dad got him. Very Indiana Jones. I think Roger was skeptical about wearing it. As he was tooling around in it today, I said "you look really good in that hat" and he said, "Yah, you know, it is a good hat and does look pretty good" He really does look super cute!
Thats life in our lane. Hope life is moving along well in your lane of the world.
hugs, a & r
UGGGGGGGHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Next, all of you out there ....I need to ask a HUGE HUGE favor. Please screen all movies for us and send us your list of "dos and don'ts" . In particular, the don'ts, please. We innocently purchased a movie on pay per view Friday evening as I was busy sorting receipts. Roger did the picking. He picked one of those movies nominated for loads of awards, and I think it even won. George Clooney's The Descendants. UM, BIG MISTAKE. BIG BIG MISTAKE. Hello???? We both thought it was a family movie, about a wife cheating on a husband, and the family dysfunction which follows. Ok, not rip roaring funny but it was supposed to have cute moments. Well, Mr and Mrs Oblivious, the Wethingtons, missed the important movie detail that one of the spouses was injured and in a coma on life support. (sorry if I just did a spoiler for those of you who haven't seen the movie). NOT the uplifting laugh alot movie we needed. Must be why I gravitate to the sci-fi or "magic" movies. Guess, we'll stick to car restoration tv programs. zzzzzzzzz, can you hear me snoring now?
We drove down to the river again this weekend. Left Sunday morning. Saw my parents briefly at their river house. They were headed back to Indy and we were moving into their river house. We then went to the boat Sunday afternoon and worked into the evening. When we finally left for the evening (we stayed way to late and Roger totally over did it), Roger said with a sigh of relief "I feel so much better that we came down here". We also managed to sell off a few things this weekend. Sold a couple jet skis, sold a law mower, and sold one of the automobile projects, the Mercedes. yea. Yea. YEA! We both actually finally felt like we accomplished something. AND we continued to cross things off the list.
A girlfriend of mine who stopped by the house late last week, she was trying to encourage Roger to take it easy. and he said: "I like to tinker and do my projects. It brings makes me happy. I can't do as much as I did...but I can do a few things. And, I can't be happy holding hands and walking on the beach until I get some of these projects completed and gone". So, for now that's the focus.
He is definitely weaker, more tired, and seems to get a little confused here and there. I have been driving us most of the time. He is fine with small trips to run errands but doesn't seem to have the necessary focus for long drives. I witnessed that this morning when we were driving back to Indy from Southern IN. Roger decided to drive. I noticed he was periodically swerving a little left of the center line or onto the shoulder. It happened a couple times and I finally asked. He said he just didn't have the focus for long trips and even was dozing off. Ok. I will now be the official driver for the longer trips and we will watch the shorter trips. We only have this week of radiation to go - 5 days this week - and then recovery. I expect he'll be very tired, spacey, and out of it this week and next and then will slowly come back.
Thats life in our lane. Hope life is moving along well in your lane of the world.
hugs, a & r
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