Not much to say.
Roger still feels poorly.
He is worn out.
His disposition is down.
We're doing fluids here at home tonite.
Hoping tomorrow is a better day.
More tomorrow. ~a
Wednesday, August 31, 2011
Tuesday, August 30, 2011
Hurricane Irene or Chemo?
I'd say they are similar. Sure, one is wind and water and the other is a little bag of chemicals. They both wreck havoc, pain, and leave a wake of destruction.
As you've seen from the past few days, this round of chemo has been tough. I'm hoping we are climbing out of the hole. Roger was up and moving a bit today but generally felt poorly all day. He said he had to lay down three times. Exhaustion and crappiness. I really hate hearing he felt so poorly that he had to lay down. In my mind (yes yes, my control-freak mind), I immediately jump to "what if something happened??". As you can imagine its difficult trying to balance living and working while still being around for your loved one. Major balancing act. Never mind the whole emotional element....just the sheer logistics are challenging and exhausting. I had a busy day of work-related appointments including a client dinner so I was in and out of the house all day/evening. By the time I returned home this evening, he seemed a tiny bit better. More than I've seen in 5 days. He ordered a pizza (yep, more health food) which was delivered shortly after I returned home this evening. Unfortunately I think he's only eaten one piece....but its eating nonetheless. I don't think he's eaten enough in the last 72 hours to sustain a hummingbird, let along a grown male trying to recover from chemo.
After feeling so poorly for so many days, Roger's disposition is naturally a little down. No surprise. Hell, can you blame him??? Not at all. You still wish you had a magic wand to fix all the broken things, make all the wrongs right, and just generally make him feel better. Despite all my wand waving....no magic. I think the "extra" bad days beyond what we predicted were discouraging for Roger AND for me. According to or chemo journal he really should be feeling much better. I sure wish his body would cooperate with our chemo journal. :-)
So, I'm officially pooped. And, I gotta tell you...I miss my fun-loving hubby. I know he's in there. I see glimpses. We laugh here and there and those moments of laughter increase as the chemo days fade into the background.
Hoping you have loads of laughs in your world. Hugs, angie and roger
As you've seen from the past few days, this round of chemo has been tough. I'm hoping we are climbing out of the hole. Roger was up and moving a bit today but generally felt poorly all day. He said he had to lay down three times. Exhaustion and crappiness. I really hate hearing he felt so poorly that he had to lay down. In my mind (yes yes, my control-freak mind), I immediately jump to "what if something happened??". As you can imagine its difficult trying to balance living and working while still being around for your loved one. Major balancing act. Never mind the whole emotional element....just the sheer logistics are challenging and exhausting. I had a busy day of work-related appointments including a client dinner so I was in and out of the house all day/evening. By the time I returned home this evening, he seemed a tiny bit better. More than I've seen in 5 days. He ordered a pizza (yep, more health food) which was delivered shortly after I returned home this evening. Unfortunately I think he's only eaten one piece....but its eating nonetheless. I don't think he's eaten enough in the last 72 hours to sustain a hummingbird, let along a grown male trying to recover from chemo.
After feeling so poorly for so many days, Roger's disposition is naturally a little down. No surprise. Hell, can you blame him??? Not at all. You still wish you had a magic wand to fix all the broken things, make all the wrongs right, and just generally make him feel better. Despite all my wand waving....no magic. I think the "extra" bad days beyond what we predicted were discouraging for Roger AND for me. According to or chemo journal he really should be feeling much better. I sure wish his body would cooperate with our chemo journal. :-)
So, I'm officially pooped. And, I gotta tell you...I miss my fun-loving hubby. I know he's in there. I see glimpses. We laugh here and there and those moments of laughter increase as the chemo days fade into the background.
Hoping you have loads of laughs in your world. Hugs, angie and roger
Sunday, August 28, 2011
And the storm continues
Not quite the tempest of the East coast storms....but storming nonetheless. Roger - as predicted - is feeling pretty rotten. Hopefully today, Sunday, will be better than yesterday.
Yesterday was a down day. Roger spent most of the day on the sofa, or his recliner, or up in bed. The hit list of feelings includes all that I've mentioned before: flu-y, nausea, vomiting, achy, no energy....just worn out from feeling like crap. An additional big issue is that Roger feels like he can't swallow. He said he feels like his throat is "twisted up" and that food and liquid will not pass. We'll have to discuss with his oncologist. One of the things the surgeon said 2 years ago when he removed Roger's esophagus was that they may need to dilate his esophagus periodically in the event scar tissue has caused the passageway to narrow. Could be that Roger needs to have the remaining portion of the esophagus stretched where it now connects to the stomach.
In the meantime, food and drink continues to remain a challenge. Yesterday Roger had a breakfast sandwich, a few bites of fruit and some sprite and that was it. Fortunately we were able to get him IV fluids. A home nurse came to the house and showed me how to hook Roger up to the saline and sugared saline, and flush the lines. Our plan is to give him fluids at home Saturday and Sunday, as needed on going. He will still go into the infusion center during the week for fluids and additional meds.
Yesterday, Roger proclaimed we wouldn't need to do fluids today. Based on the fact he doesn't seem to be able to drink without vomiting....I think we'll do fluids again today even though he just sniped at me "no we won't". The process takes about 3-4 hours. Roger sits on the sofa, vegs out to the TV. I buzz around getting all the house work done. Yesterday I managed to knock out mowing the yard, weed whipping (whipping? wacking? eating?), refilling the bird feeders and humming bird feeders, and putting a dent in the laundry. Today will be finishing the laundry, pay a few bills (LEAST favorite thing) and do some work projects. Probably a good thing to stay out of each other's hair. His patience is short....and who can blame him. When you chronically feel bad....what do you expect? My patience is worn thin. What happens when you combine two people with short patience...um, not the formula for great laughs and marital harmony.
I have a hard time balancing my need for control and wanting to fix EVERYTHING with Roger's need for independence....and just not being suffocated. The caregiver is the "coach" (at least that's what Roger's oncologist says) so as the coach I'm always suggesting food, drink, walks, exercise, etc. In the long run, I know...we know...its the right approach. In the short term, I will tell you your armour gets dented pretty quickly with the "long-eyeed" looks and snippy remarks made. As you can imagine, its not all funny moments or tender touches. As in any relationship, there are hurt feelings, harsh words, and just plain ol' simple human interaction which isn't always pretty. Cancer has, if nothing else, given us the ability to realize when feelings are hurt or harsh words said, that the moment is most likely colored by fear/hurt/pain/exhaustion/etc from cancer. I guess its a little bit like a diffuser.
Its looks like its going to be a beautiful day. Perfect temperature so far. I'm hoping I can get Roger up for a short walk . Cross your fingers for a good day all around. ~ a
Yesterday was a down day. Roger spent most of the day on the sofa, or his recliner, or up in bed. The hit list of feelings includes all that I've mentioned before: flu-y, nausea, vomiting, achy, no energy....just worn out from feeling like crap. An additional big issue is that Roger feels like he can't swallow. He said he feels like his throat is "twisted up" and that food and liquid will not pass. We'll have to discuss with his oncologist. One of the things the surgeon said 2 years ago when he removed Roger's esophagus was that they may need to dilate his esophagus periodically in the event scar tissue has caused the passageway to narrow. Could be that Roger needs to have the remaining portion of the esophagus stretched where it now connects to the stomach.
In the meantime, food and drink continues to remain a challenge. Yesterday Roger had a breakfast sandwich, a few bites of fruit and some sprite and that was it. Fortunately we were able to get him IV fluids. A home nurse came to the house and showed me how to hook Roger up to the saline and sugared saline, and flush the lines. Our plan is to give him fluids at home Saturday and Sunday, as needed on going. He will still go into the infusion center during the week for fluids and additional meds.
Yesterday, Roger proclaimed we wouldn't need to do fluids today. Based on the fact he doesn't seem to be able to drink without vomiting....I think we'll do fluids again today even though he just sniped at me "no we won't". The process takes about 3-4 hours. Roger sits on the sofa, vegs out to the TV. I buzz around getting all the house work done. Yesterday I managed to knock out mowing the yard, weed whipping (whipping? wacking? eating?), refilling the bird feeders and humming bird feeders, and putting a dent in the laundry. Today will be finishing the laundry, pay a few bills (LEAST favorite thing) and do some work projects. Probably a good thing to stay out of each other's hair. His patience is short....and who can blame him. When you chronically feel bad....what do you expect? My patience is worn thin. What happens when you combine two people with short patience...um, not the formula for great laughs and marital harmony.
I have a hard time balancing my need for control and wanting to fix EVERYTHING with Roger's need for independence....and just not being suffocated. The caregiver is the "coach" (at least that's what Roger's oncologist says) so as the coach I'm always suggesting food, drink, walks, exercise, etc. In the long run, I know...we know...its the right approach. In the short term, I will tell you your armour gets dented pretty quickly with the "long-eyeed" looks and snippy remarks made. As you can imagine, its not all funny moments or tender touches. As in any relationship, there are hurt feelings, harsh words, and just plain ol' simple human interaction which isn't always pretty. Cancer has, if nothing else, given us the ability to realize when feelings are hurt or harsh words said, that the moment is most likely colored by fear/hurt/pain/exhaustion/etc from cancer. I guess its a little bit like a diffuser.
Its looks like its going to be a beautiful day. Perfect temperature so far. I'm hoping I can get Roger up for a short walk . Cross your fingers for a good day all around. ~ a
Friday, August 26, 2011
I don't understand
I don't understand any of the following:
I don't understand how a 30 year old can die from brain cancer after having fought it for many many years.
I don't understand how his parents can be gracious and kind when greeting people at his visitation to the point where they wish others (Roger and me) strength.
I don't understand how Roger's sister can learn that she not only has her third round of cancer but that it is Stage 4 and aggressive.
I don't understand how any of this makes sense.
I don't understand how we can send a man to the moon but we can't cure cancer.
I
don't
understand.
Today was a hard day for both of us. Lots of emotion, lots of heavy thoughts, all coupled with the fact Roger doesn't feel well. He managed to eat breakfast and lunch and nibbled a little for dinner. He is full speed headed towards a chemo crash tomorrow. Our point of focus? Monday should mean the start of better days....hold on, be patient, try try try to be positive and remember....one day at a time....just breathe.
~ a
I don't understand how a 30 year old can die from brain cancer after having fought it for many many years.
I don't understand how his parents can be gracious and kind when greeting people at his visitation to the point where they wish others (Roger and me) strength.
I don't understand how Roger's sister can learn that she not only has her third round of cancer but that it is Stage 4 and aggressive.
I don't understand how any of this makes sense.
I don't understand how we can send a man to the moon but we can't cure cancer.
I
don't
understand.
Today was a hard day for both of us. Lots of emotion, lots of heavy thoughts, all coupled with the fact Roger doesn't feel well. He managed to eat breakfast and lunch and nibbled a little for dinner. He is full speed headed towards a chemo crash tomorrow. Our point of focus? Monday should mean the start of better days....hold on, be patient, try try try to be positive and remember....one day at a time....just breathe.
~ a
Another day in paradise
We are at the oncology center now. The chemo pump comes off today. The actual chemo keeps surging through Roger's system for days to come. He is snoozing away as fluids and various medicines drip and the remainder of his chemo pump drips. A few minutes ago, as he was falling asleep he jerked/twitched himself awake...I looked over to make sure everything was ok. He pulled the blanket up and looked at me with a blank stare and announced, "Kitty dream. Almost caught the bird"...and fell back asleep. The moment reminded me of when he was in the hospital 2 years ago after they removed his esophagus waaaay back when we started this adventure. After the surgery, he was on all kinds of pain killers including morphine. Well, lemme tell you....morphine and Roger do NOT mix well. He had all kinds of crazy going on. One night (of the 25 some odd nights we were there), he announced "I've got it!" I look over bewildered and inquired about what he "had". He is holding his hands in a cupped position with a corner of his blanket in the middle of the cup and responds, "look! I've caught the bird". Oh my. I kinda looked around the room, looked back at him, and looked around the room again...."um, ok Honey. I think we are going to talk to the doctor about your morphine and see if we can get a different drug". A new pain killer was tried the next day and happily the hallucinations slowed. Very weird experience.
Should be leaving here around 1:30 or 2:00 and then headed back home. Hoping to get Roger to eat something...fast-food favorites lately include Taco Bell (repeatedly) and McDonalds. *sigh* I'm afraid to know what's going on with his cholesterol and his arteries.... regardless, the goal for now is meat on his bones! Hopefully, more meat on his bones and LESS on mine.
The weekend will entail sofa or bed time for Roger and yard and house work for me. Our much neglected lawn will get a cut, bird feeders refilled (Roger claims I am merely providing a smorgasbord for the Killer Cat Yoda...),wilted plants watered, etc.
That's all for now. Looks like Roger has about another 30 minutes to go on his IV. Will post again soon.
xxooxx, angie
Should be leaving here around 1:30 or 2:00 and then headed back home. Hoping to get Roger to eat something...fast-food favorites lately include Taco Bell (repeatedly) and McDonalds. *sigh* I'm afraid to know what's going on with his cholesterol and his arteries.... regardless, the goal for now is meat on his bones! Hopefully, more meat on his bones and LESS on mine.
The weekend will entail sofa or bed time for Roger and yard and house work for me. Our much neglected lawn will get a cut, bird feeders refilled (Roger claims I am merely providing a smorgasbord for the Killer Cat Yoda...),wilted plants watered, etc.
That's all for now. Looks like Roger has about another 30 minutes to go on his IV. Will post again soon.
xxooxx, angie
Thursday, August 25, 2011
Its getting quiet
Despite our best efforts at predicting when Roger would hit his downward descent...we were wrong again. We expected the bad days to really start late Friday afternoon and then hit a fast acceleration downward on Saturday/Sunday. And, again...we were wrong. Roger started to feel bad yesterday and has steadily declined. Its getting more and more quiet in the house. As I sit here and type, he is sitting across from me on the sofa, leaning forward over his knees and falling asleep as he curls into a sitting mummy. The various drugs and medications don't seem to help. He took an ativan late afternoon in an attempt to give him a little relief...make him less achy, less edgy, less overall uncomfortable, and maybe sleep a little. It didn't work.
So now, I sit here debating: Do I wake him up to nudge him to go upstairs to bed and risk him realizing he's uncomfortable? Or do I sit here across from him and keep an eye on him as he dozes off to make sure he doesn't fold up into a ball rolling forward off the sofa and land on the floor? I figure I'll finish this post and then nudge him upstairs to bed as I collect his pillows from the sofa and the various drugs he needs to take for the night.
We will be going to the oncology center tomorrow to have the chemo pump removed and get more anti-nausea, anti-diarrhea meds and more fluids. We have signed up to have a home nurse come to the house Saturday morning to get us set up to do fluids at home over the weekend. Roger has always said, and I have come to agree...the best place to get sick is the hospital...so if we can do his fluids over the weekend at home...why not? I learned how to give him IV anti-biotics and liquid food through his feeding tube two years ago. Giving him fluids now? PIECE of cake!!
His challenges today: numbness of hands and fingers, more immediate and intense sensitivity to cold (feels like its burning...like grabbing dry ice), nausea, cramping, flu-y feeling, and of all things....hiccups!! So, believe it or we have a drug to help stop hiccups. Poor Roger will wake up in the middle of the night hiccuping and it will be non-stop until the meds settle in. The reason everything has happened so quickly and so much more intensely is because chemo is cumulative in nature. Even when you feel better there is bits of it in your system which combines with the new dosage. So, sadly...it probably means each future treatment will be more and more intense. We're hoping the doctor will give additional time between each chemo infusion which will allow Roger to recover more.
The schedule for the near future: Roger will have a CT scan within the next week or two to see if the chemo has done its job. If it has, then Roger will have another four months of treatment (ugh!!!) . We're told by his doctor, that chemo may become a permanent part of Roger's life if it appears to be working.
We'll my hubby is curling into a ball as he falls a sleep leaning forward. I'm afraid he's going to roll off the sofa and land on his head or land on our fat-cat Earl. So, I think its time for me to nudge him to go to bed.
g'nite. ~ a
So now, I sit here debating: Do I wake him up to nudge him to go upstairs to bed and risk him realizing he's uncomfortable? Or do I sit here across from him and keep an eye on him as he dozes off to make sure he doesn't fold up into a ball rolling forward off the sofa and land on the floor? I figure I'll finish this post and then nudge him upstairs to bed as I collect his pillows from the sofa and the various drugs he needs to take for the night.
We will be going to the oncology center tomorrow to have the chemo pump removed and get more anti-nausea, anti-diarrhea meds and more fluids. We have signed up to have a home nurse come to the house Saturday morning to get us set up to do fluids at home over the weekend. Roger has always said, and I have come to agree...the best place to get sick is the hospital...so if we can do his fluids over the weekend at home...why not? I learned how to give him IV anti-biotics and liquid food through his feeding tube two years ago. Giving him fluids now? PIECE of cake!!
His challenges today: numbness of hands and fingers, more immediate and intense sensitivity to cold (feels like its burning...like grabbing dry ice), nausea, cramping, flu-y feeling, and of all things....hiccups!! So, believe it or we have a drug to help stop hiccups. Poor Roger will wake up in the middle of the night hiccuping and it will be non-stop until the meds settle in. The reason everything has happened so quickly and so much more intensely is because chemo is cumulative in nature. Even when you feel better there is bits of it in your system which combines with the new dosage. So, sadly...it probably means each future treatment will be more and more intense. We're hoping the doctor will give additional time between each chemo infusion which will allow Roger to recover more.
The schedule for the near future: Roger will have a CT scan within the next week or two to see if the chemo has done its job. If it has, then Roger will have another four months of treatment (ugh!!!) . We're told by his doctor, that chemo may become a permanent part of Roger's life if it appears to be working.
We'll my hubby is curling into a ball as he falls a sleep leaning forward. I'm afraid he's going to roll off the sofa and land on his head or land on our fat-cat Earl. So, I think its time for me to nudge him to go to bed.
g'nite. ~ a
Wednesday, August 24, 2011
Cancer, chemo and really bad, inapprorpriate humor
I had such a strange observation this morning, and I'm warning you its a wildly inappropriate discussion topic among polite circles....
As I've mentioned before, we monitor and diary everything in an attempt to predict the future and also to keep the doctors and nurses informed of whats going on. An on-going concern is keeping Roger hydrated and fed. So, intestinal issues (aka diarrhea) is NOT a good thing...it defeats the goal of staying hydrated. Knowing this as a backdrop, you'll understand how the following question can become a regular, daily question "have you had a bowel movement and if so how was it?" UGHHHHHHH!!!!!! I mean really UGHHHHH!!!!!!! Cancer has turned us into to old people!!! Don't old people talk about bowel movements?!?!?! (see, inappropriate discussion topic?) We never talked about this stuff before...I mean NEVER!!!! Hell, Roger has always left the room to even pass gas as long as I've known him (over 20 years)...sorry, more in appropriate discussion....but hey, you were warned! When Roger turned 50 he announced we were turning into junior old people. Now this confirms it!!
Ok, enough of the rather crude observation. We are sitting here at the Oncology center. Roger is sitting in a recliner snoozing away as the chemo drop by drop flows into his veins. And in a moment of silent resolution we hunker down for the slow decline. The Oncology center is buzzing. Lots of patients. Amidst the buzz of the the nurses talking to the various patients and getting them hooked up to their treatments, you hear the background hum of various patients snoring away. No bias intended here...but most of the snoring patients appear to be men. Just a mere observation. Nothing more.
As I've mentioned a million times before, this cancer-crap gives you perspective. That's one of the few gifts it gives (cancer giving gifts???? no, I'm not drunk). It gives perspective and maybe increased patience at some level. An example. I freaking HATE traffic. Hate it hate it hate it. Likewise, I'm less than enthused with drivers who diddle along with no sense of purpose or direction. If I'm in my car....I've got somewhere to be...I'm either headed to work, or headed home from work, or headed to the oncology center with Roger, or....you get the gist. So, having said that...now, I just ask myself....is it really worth getting so worked up in the whole scheme of things? Um, no. Same thing applies to work. Is it really worth getting worked up about the various issues and challenges which present themselves....Um no, not in the whole scheme of things. Dont' get me wrong....this little chant or mantra does NOT always work. Just something to help keep the appropriate focus.
Roger managed to go into the glass studio to blow glass yesterday. He's trying to get some sort of routine back, get the rhythm back. I know he's got a long list of things to make for many of you out there. He said he managed to get a couple pieces made but definitely knows when he has not been in the studio for a long time. He loses he timing. I love the fact that he really wants to get back at it. His newest non-glass project is making a coffee table. We went to the fair a week ago and while there, walked through the area where they do wood milling. He was able to secure a beautiful piece of red oak that had been sliced off a tree trunk. I'm not sure of the overall vision but know that Roger will undoubtedly make something gorgeous. I'll try to take some pictures over the next couple days. He also has his sight on creating a water feature for part of the yard. He dragged me to a local stone center to look at gigantic rocks. He wants to get a big one and drill a hole through the center and run a pump through it. NATURALLY Roger would not be happy just going to the local hardware store to buy a fountain...nooooooo, we have a buy a big honkin' boulder that will have to be delivered and FORK LIFTED off the truck and then he will have to work the rock to make the fountain....never a simple project.
I think Roger will be officially "retiring" from the karting center this month. Its a strange thing. Normally, you'd think retirement is a happy thing in this case its an occasion for mixed emotion. Cancer is the motivator for retiring...not that we elected to retire to enjoy life outside of work. He will be "of counsel" and available to help on projects etc. but will not be going into the karting center on a regular basis. Again, its a strange thing. I wanted to have a dinner/party to celebrate the accomplishment Roger had in creating the karting center and growing it into such a successful business. He will have NO part of it. So, we've agreed to disagree and I'll just have to channel my cheerleader enthusiasm into something else. I just believe we should always celebrate the good whenever and wherever you can and the good in this case is this successful business.
Anyway, blah blah blah. Enough for now. I'll post more tomorrow or the next day. ~ angie
Monday, August 22, 2011
A lot to say or rather not a lot to say
Just realized I haven't posted since Thursday...is it because I have a lot to say or not so much? I guess the answer is both. Rolling into the weekend Roger was feeling better with each passing moment. We ended up going down to the boat Friday evening for the weekend. He worked on a couple projects and tinkered around the boat. The weather was simply perfect. Not toooo hot and not toooo cool and no rain. Good friends and family came down for a day of boating Sunday. All good stuff. The kind of stuff you just love to settle into...relax....and enjoy. Unfortunately, at least for me (I haven't asked Roger but suspect he feels the same) you just can't fully relax...can't fully let go.. Sad thing is that you know, just around the corner, is ANOTHER round of chemo. And so we will jump back onto the roller coaster for more of the ride from hell. Roger will slip back into his semi-zombie state. The house will get very quiet but for the TV droning away in the back ground and my constant nagging "have you had anything to eat or drink? you have to eat and drink. if you don't eat and drink, you'll get dehydrated and i'll have to take you to the hospital and you'll hate it. so have some water or Gatorade and how about a nice yummy protein bar?" Nag nag nag. 16 years of marriage...I'm a PRO!
I could go on and bore with you with endless details of our weekend but wont. Suffice to say it was great fun with tons of good food, laughter and maybe just a wee bit of alcohol. So here we are sitting at the end of Monday. The start of another work week, the start of another chemo week. Big ol' drama but not worth going into. Its funny how things that used to make me or make Roger crazy...pissed off...annoyed beyond words...all tend to fall in significance. Don't get me wrong. We both bitch up a fit about various topics - ESPECIALLY ME (as if any of you question who has the shorter fuse). But then, as if a pressure valve has been opened, the annoying issue/topic diminishes, the stupid person is, well still stupid (duh) but much less significant in the whole scheme of things. And you find yourself looking for the next focal point to help weather the oncoming storm.
We heard sad news today that one of Roger's former employees who had been battling brain cancer for many years passed away. It rendered us both speechless. 1) because he was very very young, early 30s, 2) every time someone passes from cancer...well, it leaves us speechless with all the thoughts we so desperately try to avoid, and 3) we can't help but be sad for the family and friends left behind. This guy was really sweet, very kind and very very sick. He would often only work a day every now and again. Roger told him no matter what, he always had a job at Fasttimes. Sadly, Roger hadn't heard from him in a almost a year and figured the battle may not be going well. The news today, though anticipated, was startling and sad.
Hoping your worlds are all blue skies and smooth sailing. Enjoy your people. Enjoy your people. And ignore all the stupid people. there are a BUNCH of them out there...they don't deserve the time or energy...I think I'm saying this as much for my own benefit as anyone else's ~angie
I could go on and bore with you with endless details of our weekend but wont. Suffice to say it was great fun with tons of good food, laughter and maybe just a wee bit of alcohol. So here we are sitting at the end of Monday. The start of another work week, the start of another chemo week. Big ol' drama but not worth going into. Its funny how things that used to make me or make Roger crazy...pissed off...annoyed beyond words...all tend to fall in significance. Don't get me wrong. We both bitch up a fit about various topics - ESPECIALLY ME (as if any of you question who has the shorter fuse). But then, as if a pressure valve has been opened, the annoying issue/topic diminishes, the stupid person is, well still stupid (duh) but much less significant in the whole scheme of things. And you find yourself looking for the next focal point to help weather the oncoming storm.
We heard sad news today that one of Roger's former employees who had been battling brain cancer for many years passed away. It rendered us both speechless. 1) because he was very very young, early 30s, 2) every time someone passes from cancer...well, it leaves us speechless with all the thoughts we so desperately try to avoid, and 3) we can't help but be sad for the family and friends left behind. This guy was really sweet, very kind and very very sick. He would often only work a day every now and again. Roger told him no matter what, he always had a job at Fasttimes. Sadly, Roger hadn't heard from him in a almost a year and figured the battle may not be going well. The news today, though anticipated, was startling and sad.
Hoping your worlds are all blue skies and smooth sailing. Enjoy your people. Enjoy your people. And ignore all the stupid people. there are a BUNCH of them out there...they don't deserve the time or energy...I think I'm saying this as much for my own benefit as anyone else's ~angie
Thursday, August 18, 2011
A little better every day (or night)
As we anticipated, Roger has continued to feel a little better each day since his last chemo dose. The best evidence of his improvement is how much more he communicates, what he is saying, and just his overall nature. I can tell you based on two nights ago, he must be feeling better (but...or butt....for intestinal issues...couldn't resist :-)) . Roger was watching TV and I was doing work while sitting in the TV room. At some point he ended up turning on one of the recorded TV shows, Masterchef, the finale. TWO hours later the show ends and I realize its 1:00 a.m.!!!!! Holy hell!!!! Neither of us is ever up until 1:00 a.m.... waaaaay past our bedtime! Anyway, at the conclusion of the show upon realizing how freakin' late it was, I get up and announce I'm going to bed. Roger indicates he is doing the same. So, off to bed we went. I get settled into bed before he does, then he crawls into bed and turns the TV on. Ok, I prefer to not have the tv on especially at 1:00 a.m. when trying to go to sleep...but whatever if it helps him fall asleep. I end up putting on one of those eye masks to help keep the light out.
So that's where I was, trying to drift off to sleep, with my eye mask on, and the TV blaring in the back ground. Not ideal sleeping conditions. As I'm drifting off to sleep, Roger is trying to fluff his pillow(s) and squish into his nest. I then feel this whoosh of fabric across my face... the edge of Roger's pillow grazing my face. Hmmm, that's annoying but I'm sure it was an accident. Then I hear the thump thump thump of him fluffing pillows and ANOTHER whoosh across my face...this time the edge of a another pillow. Now, I'm no longer drifting off to sleep. Now I'm trying to determine if my head should spin on my shoulders with annoyance or ignore the constant fluffling, whooshing and noise of the TV because my poor hubby is trying to get comfortable. As I'm trying to process this and decide head-spinning or ignore....I feel ANOTHER whoosh across my face.... now the sheet grazing my face?!?!?!? Seriuosly?? That was it! No more could I take. While flipping the eyemask off my eyes and shooting Roger a big ol' glare , I bark out "WHAT the HEEEEEELLLLLLL are you doing??????" Only to be looking Roger in the face who has this huge smirk on his face as he responds "What? who? me? whhhhaaaatttts the matter? Did I accidentally hit you with the pillow a couple times?" And then he starts to GIGGLE..... REALLY?!?!?!?!? 1:oo am on a "school night" and Mr. Funnybones is going to mess with/tease me by tagging me with his pillows and cover??? Really? As I threatended to pop him upside the head with MY pillow ....he starts laughing again. And just like that my really good "mad" got squished and we both ended up laughing.
So there you have it. My best proof Roger is starting to feel better...his obnoxious sense of humor is returning. Be careful what you wish for. ~ angie
So that's where I was, trying to drift off to sleep, with my eye mask on, and the TV blaring in the back ground. Not ideal sleeping conditions. As I'm drifting off to sleep, Roger is trying to fluff his pillow(s) and squish into his nest. I then feel this whoosh of fabric across my face... the edge of Roger's pillow grazing my face. Hmmm, that's annoying but I'm sure it was an accident. Then I hear the thump thump thump of him fluffing pillows and ANOTHER whoosh across my face...this time the edge of a another pillow. Now, I'm no longer drifting off to sleep. Now I'm trying to determine if my head should spin on my shoulders with annoyance or ignore the constant fluffling, whooshing and noise of the TV because my poor hubby is trying to get comfortable. As I'm trying to process this and decide head-spinning or ignore....I feel ANOTHER whoosh across my face.... now the sheet grazing my face?!?!?!? Seriuosly?? That was it! No more could I take. While flipping the eyemask off my eyes and shooting Roger a big ol' glare , I bark out "WHAT the HEEEEEELLLLLLL are you doing??????" Only to be looking Roger in the face who has this huge smirk on his face as he responds "What? who? me? whhhhaaaatttts the matter? Did I accidentally hit you with the pillow a couple times?" And then he starts to GIGGLE..... REALLY?!?!?!?!? 1:oo am on a "school night" and Mr. Funnybones is going to mess with/tease me by tagging me with his pillows and cover??? Really? As I threatended to pop him upside the head with MY pillow ....he starts laughing again. And just like that my really good "mad" got squished and we both ended up laughing.
So there you have it. My best proof Roger is starting to feel better...his obnoxious sense of humor is returning. Be careful what you wish for. ~ angie
Tuesday, August 16, 2011
Perfect and not so perfect moments
Not so perfect moments include chemo, aftermath from chemo and paying bills... especially medical bills!
Perfect moments (well just a few of many!): when we have just gotten out of the car and are walking away from the car. Within moments, Roger slips his hand into mine. Usually happens without fail. And every time, subconsciously and consciously I'm washed over with great joy. The same thing happens at night as I'm drifting off to sleep I hear the rustle of covers and feel Roger's hand reach out to hold mine or rest on my arm. We can't really snuggle any more because he has to sleep in a nest of pillows creating a small pillow-mountain to cushion himself and keep him sleeping at a slight angle to prevent gagging.
Roger is still in chemo recovery mode. Feeling a little less "flu-y" but now having to deal with all the intestinal challenges. This will probably go on for another 2-3 days. Hopefully he'll at least feel better by the weekend. And, as we all know...just in time to start chemo all over again next Wednesday. Roller coaster, huh? Used to like roller coasters....hate the freaking things now!
Thought I'd pass on some of the new yums I have made recently. I channel my frustration, concerns, fears, etc into cooking....kinda silly when you know Roger isn't eating. Regardless its good therapy for me even if it ends up being thrown away in the long run. I have been trying to do more organic, veggie, anti-cancer, good-for-you-food. Sounds gross, right? And when you hear this you'll probably say, um, really gross. But trust me....actually pretty yummy.
Kale crisps: you use kale (the garnish stuff used to make food look pretty), tear it into little pieces (remove the veins), put in a bowl, drizzle in some olive oil - don't soak it - just lightly coat. Spread the little bits on a covered cookie sheet. I use parchment paper. sprinkle with sea salt. Then bake at 350 degrees for about 12-15 minutes. take out and eat when cool. Little green chips FULL of nutrients and good stuff. Trust me....REALLY GOOD!!! Though I do have to admit...Roger won't even try them.
Roasted cauliflower: break cauliflower into bite size pieces, put on cookie sheet, drizzle with olive oil, and sprinkle with sea salt. Cook at 350 degrees for about 30-45 min until soft. YUM. We ate them like candy. The ones we didn't eat, I pureed and made into a roasted cauliflower with leeks soup. again, really good.
Sauteed Leeks (not scallions, not little green onions): I have never cooked with leeks before but have read about how good they are for you. So, I was preparing a couple recipes requiring sauteed leeks. I cut the white part into little 1/4' discs (used the green part for soups/broths). Sauteed in olive oil until golden brown. I even cooked some until the rings separated into little mini onion rings translucent and crunchy. Seriously sooooo good. Roger and I both just ate them out of the pan. Sadly they never made it to the intended recipes. The leeks I used were the size in diameter of a golf ball.
So, keep your fingers crossed that Roger continues to feel better because crappy days suck.
~ A&R
Perfect moments (well just a few of many!): when we have just gotten out of the car and are walking away from the car. Within moments, Roger slips his hand into mine. Usually happens without fail. And every time, subconsciously and consciously I'm washed over with great joy. The same thing happens at night as I'm drifting off to sleep I hear the rustle of covers and feel Roger's hand reach out to hold mine or rest on my arm. We can't really snuggle any more because he has to sleep in a nest of pillows creating a small pillow-mountain to cushion himself and keep him sleeping at a slight angle to prevent gagging.
Roger is still in chemo recovery mode. Feeling a little less "flu-y" but now having to deal with all the intestinal challenges. This will probably go on for another 2-3 days. Hopefully he'll at least feel better by the weekend. And, as we all know...just in time to start chemo all over again next Wednesday. Roller coaster, huh? Used to like roller coasters....hate the freaking things now!
Thought I'd pass on some of the new yums I have made recently. I channel my frustration, concerns, fears, etc into cooking....kinda silly when you know Roger isn't eating. Regardless its good therapy for me even if it ends up being thrown away in the long run. I have been trying to do more organic, veggie, anti-cancer, good-for-you-food. Sounds gross, right? And when you hear this you'll probably say, um, really gross. But trust me....actually pretty yummy.
Kale crisps: you use kale (the garnish stuff used to make food look pretty), tear it into little pieces (remove the veins), put in a bowl, drizzle in some olive oil - don't soak it - just lightly coat. Spread the little bits on a covered cookie sheet. I use parchment paper. sprinkle with sea salt. Then bake at 350 degrees for about 12-15 minutes. take out and eat when cool. Little green chips FULL of nutrients and good stuff. Trust me....REALLY GOOD!!! Though I do have to admit...Roger won't even try them.
Roasted cauliflower: break cauliflower into bite size pieces, put on cookie sheet, drizzle with olive oil, and sprinkle with sea salt. Cook at 350 degrees for about 30-45 min until soft. YUM. We ate them like candy. The ones we didn't eat, I pureed and made into a roasted cauliflower with leeks soup. again, really good.
Sauteed Leeks (not scallions, not little green onions): I have never cooked with leeks before but have read about how good they are for you. So, I was preparing a couple recipes requiring sauteed leeks. I cut the white part into little 1/4' discs (used the green part for soups/broths). Sauteed in olive oil until golden brown. I even cooked some until the rings separated into little mini onion rings translucent and crunchy. Seriously sooooo good. Roger and I both just ate them out of the pan. Sadly they never made it to the intended recipes. The leeks I used were the size in diameter of a golf ball.
So, keep your fingers crossed that Roger continues to feel better because crappy days suck.
~ A&R
Sunday, August 14, 2011
The climb out of hell
So, I know I should have posted yesterday. A) its a great way to get the word out to all of you, and B) its a great way to purge. But, I gotta tell you, I just couldn't yesterday. I was filled with so many mixed emotions. There just weren't any words that would come. So, as the evening wore on, we tuned in mindless TV and I had a glass of wine. And quietly the evening ticked a way.
Here's a recap of Saturday and today. Yesterday started out cautiously optimistic but optimistic nonetheless. Roger felt bad Friday, but felt less bad than what we recall from Round 2 of chemo. We were also equipped with the knowledge that his oncologist was trying a different approach by giving Roger an additional dose of IV-delivered anti-nausea drugs Friday....Good signs right?
Along comes Saturday. I woke up with great optimism and big plans for a busy day. After double and triple checking with Roger "how are you feeling? Feeling ok?" and receiving the response "yes, I'm feeling ok. Not great but not horrible. While you are out, would you stop and get me some breakfast on the way home?" So, armed with this encouraging news I head out to the
Farmers Market and then the polar opposite....MCDONALDS for the breakfast of champions. I stop by the house to drop off the goods and the not-so-good-for-you breakfast. Roger was downstairs sitting on the sofa. Once I was sure he was ok, I then headed back out to go to the bank and then the grocery. Half way thru the grocery, I call Roger to ask if he would like a specific cookie. With a pained voice he answered the phone. He was starting to turn for the worse....stomach in knots, cramping, extreme nausea, vomiting, pain and just over all discomfort. When I got home, I found him balled up on the sofa. So, I set about collecting the anti-nausea drugs we have and Ativan. After he took the drugs... about an hour later, his system settled down and he fell asleep. He slept through most of the afternoon (magic Ativan at work) and then drifted in and out the balance of the evening. I quietly spent the balance of the afternoon making a dinner to
take over to my brother's house (his father-in-law passed away on Friday).
(Roger and Yoda in the pictures)
It breaks your heart to watch Roger go through this. His ability to communicate clearly diminishes...he just feels too crappy to communicate beyond mumbling. So, the balance of the day and evening gets very quiet...except for me trying to encourage him to at least drink some fluids and maybe eat some cracker...there isn't much said. All the while I silent scold myself for actually thinking we would escape the clutches of chemo. Honestly, I knew better. And knowing better , I would never have waited so long to encourage him to take the as-needed medicines. Oh well. Lesson learned. No relaxing and no false optimism with chemo. Period.
That was yesterday. Today, we had an appointment scheduled for fluids. On the weekends, we have to go into the hospital because the infusion center is closed. So, at 10:00 a.m. we packed up our stuff (me with computer, files, and books in tow) and headed to the hospital. After a bag of saline and 1/2 a bag of sugared saline, we finally got back home at 3:30 this afternoon. Based on the level of communication alone, I would say he feels a little better. Hard to say if its a function of the fluids, or the fact we are 2 days out of chemo, or a combination of all the above. Anyway, I'll take it.
He expressed interest in food on the way home from the hospital this afternoon (another good sign). Care to guess where? Nope, not Kentucky Fried Chicken, nope not McDonalds...the choice? The ever nutritious Taco Bell. *Sigh*......its food. Its calories. Its not health food....but its food that can help put weight back on (he has yoyo'd down again, back down to 142 lbs). So I go with the flow and pull into yet another drive-thru!
That's it for now. And, guess what? Chemo still sucks.
hugs, Angie and Roger
Here's a recap of Saturday and today. Yesterday started out cautiously optimistic but optimistic nonetheless. Roger felt bad Friday, but felt less bad than what we recall from Round 2 of chemo. We were also equipped with the knowledge that his oncologist was trying a different approach by giving Roger an additional dose of IV-delivered anti-nausea drugs Friday....Good signs right?
Along comes Saturday. I woke up with great optimism and big plans for a busy day. After double and triple checking with Roger "how are you feeling? Feeling ok?" and receiving the response "yes, I'm feeling ok. Not great but not horrible. While you are out, would you stop and get me some breakfast on the way home?" So, armed with this encouraging news I head out to the
Farmers Market and then the polar opposite....MCDONALDS for the breakfast of champions. I stop by the house to drop off the goods and the not-so-good-for-you breakfast. Roger was downstairs sitting on the sofa. Once I was sure he was ok, I then headed back out to go to the bank and then the grocery. Half way thru the grocery, I call Roger to ask if he would like a specific cookie. With a pained voice he answered the phone. He was starting to turn for the worse....stomach in knots, cramping, extreme nausea, vomiting, pain and just over all discomfort. When I got home, I found him balled up on the sofa. So, I set about collecting the anti-nausea drugs we have and Ativan. After he took the drugs... about an hour later, his system settled down and he fell asleep. He slept through most of the afternoon (magic Ativan at work) and then drifted in and out the balance of the evening. I quietly spent the balance of the afternoon making a dinner to
take over to my brother's house (his father-in-law passed away on Friday).
(Roger and Yoda in the pictures)
It breaks your heart to watch Roger go through this. His ability to communicate clearly diminishes...he just feels too crappy to communicate beyond mumbling. So, the balance of the day and evening gets very quiet...except for me trying to encourage him to at least drink some fluids and maybe eat some cracker...there isn't much said. All the while I silent scold myself for actually thinking we would escape the clutches of chemo. Honestly, I knew better. And knowing better , I would never have waited so long to encourage him to take the as-needed medicines. Oh well. Lesson learned. No relaxing and no false optimism with chemo. Period.
That was yesterday. Today, we had an appointment scheduled for fluids. On the weekends, we have to go into the hospital because the infusion center is closed. So, at 10:00 a.m. we packed up our stuff (me with computer, files, and books in tow) and headed to the hospital. After a bag of saline and 1/2 a bag of sugared saline, we finally got back home at 3:30 this afternoon. Based on the level of communication alone, I would say he feels a little better. Hard to say if its a function of the fluids, or the fact we are 2 days out of chemo, or a combination of all the above. Anyway, I'll take it.
He expressed interest in food on the way home from the hospital this afternoon (another good sign). Care to guess where? Nope, not Kentucky Fried Chicken, nope not McDonalds...the choice? The ever nutritious Taco Bell. *Sigh*......its food. Its calories. Its not health food....but its food that can help put weight back on (he has yoyo'd down again, back down to 142 lbs). So I go with the flow and pull into yet another drive-thru!
That's it for now. And, guess what? Chemo still sucks.
hugs, Angie and Roger
Friday, August 12, 2011
On our way to hell
Sounds like the start of a bad joke, huh? "on our way to hell, we met a man and his horse in a bar....." I said it was a bad joke, didn't I? Yep, we're on our way to hell. As predicted he's starting to go down. Roger exclaimed at one point this morning, "man, I can't believe how bad I'm starting to feel". Nothing you can do except try to endure and know that next week will mean the return of more good days.
We're here at the infusion center. The nurses are unhooking the Roger's chemo pump. For the next couple hours, an IV will flow more anti-nausea drugs, Ativan, and fluids. Roger is already snoozing. Prior to drifting off we were getting him settled in with pillow and blanket. I asked if he needed another blanket (the infusion center has blankets and pillows for the patients) and he told me "no, I kicked some old lady's butt and took the last two...she couldn't reach them. Bet she wishes she were a foot taller". He's too funny. I know better. He'd sit and freeze rather than have someone uncomfortable.
Its a busy day here today. Loads of patients getting chemo. Beth our nurse said 35! One of our observations, at least today, is that women patients come in with a wider net of support and Roger's observation is that they bring in a lot more life and laughter. Its fun to watch. We have a couple gals down from us with their support network here chirping away. Polar opposite and a strange contradiction is a family immediately across from us. Three people including the patient. The patient is an older woman who is very frail - obviously later in her chemo treatments as she is wearing a turban/scarf covering her hair. The male member of her family is visibly upset. His foot is tapping anxiously as he is lost in thought staring at his wife. He's obviously a comfort to her because she keeps reaching out to hold hands with him. Everyone has a touch stone. He must be hers.
~angie
We're here at the infusion center. The nurses are unhooking the Roger's chemo pump. For the next couple hours, an IV will flow more anti-nausea drugs, Ativan, and fluids. Roger is already snoozing. Prior to drifting off we were getting him settled in with pillow and blanket. I asked if he needed another blanket (the infusion center has blankets and pillows for the patients) and he told me "no, I kicked some old lady's butt and took the last two...she couldn't reach them. Bet she wishes she were a foot taller". He's too funny. I know better. He'd sit and freeze rather than have someone uncomfortable.
Its a busy day here today. Loads of patients getting chemo. Beth our nurse said 35! One of our observations, at least today, is that women patients come in with a wider net of support and Roger's observation is that they bring in a lot more life and laughter. Its fun to watch. We have a couple gals down from us with their support network here chirping away. Polar opposite and a strange contradiction is a family immediately across from us. Three people including the patient. The patient is an older woman who is very frail - obviously later in her chemo treatments as she is wearing a turban/scarf covering her hair. The male member of her family is visibly upset. His foot is tapping anxiously as he is lost in thought staring at his wife. He's obviously a comfort to her because she keeps reaching out to hold hands with him. Everyone has a touch stone. He must be hers.
~angie
Thursday, August 11, 2011
Random thoughts
Chemo sucks. Chemo sucks. Chemo sucks. Guess what? Chemo sucks.
The day was quiet for the most part. I had a meeting in the morning and then was able to come home and spend the day with Roger while checking email, etc. We went to his pain doctor (doctor number 5-6...losing count) and tried to map out a modified drug program that would help make the really bad chemo days a little less bad. The ultimate goal being to get Roger to the point where he will eat and drink even a little. So, we will continue to experiment. I'll tell you this pain management thing - well hell, medicine in general - is interesting. Its not as precise as we'd like to believe. "Try this, don't do that, take more of this other thing, etc". So our modified plan for this weekend is a higher dose of narcotic and Ativan, the magic mellow-sleep drug (I really do wish they'd give some to the wife!!!) and hopefully Saturday and Sunday will be less hell. I'll let you know.
Today, as the day wore on, I watched Roger slowly fade....and today isn't even a "bad" day. He is getting more tired. The other thing which is kicking in is more sensitivity to cold. He brushed his teeth this morning (personal hygiene is a good thing) and his fingers grazed the water. He said it was like little needles stabbing his fingers and shooting pain up his hand/arm. Damn damn damn damn. I had hopes the extreme sensitivity would not kick in until Saturday or Sunday. Regardless, he kept trying to drink and did a decent job of eating. Its so hard to not "settle in" or get comfortable with the notion of him eating/drinking when you know, just around the corner he's going to be rolled up in a ball on the sofa for a couple days consuming nothing.
So, that's where we are for now. Its wonderful having sunshine and mild temps to help offset the chemo day. We were able to enjoy some of the weather as we sat in our back courtyard. I have 3 or 4 humming bird feeders scattered around. Roger noted the upside of chemo has been slowing life down a little to enjoy watching nature....chipmunks, humming birds and gold finches. Observation: gold finches just seem to be really happy, chirpy birds. They eat the hell out of my flowers but are gorgeous to see and hear. Humming birds, aka Hummies, aka Fairies are simply fascinating marvels of nature. Having said that, they are also some of the most aggressive territorial birds I've ever known. They chase each other and are very possessive of the feeders. We've even had them buzz us if we get near the feeders. Too funny. Smallest little bitty thing has a REALLY BIG ATTITUDE!!!!!!!!!!! I'll post a couple pictures tomorrow. Waiting for the camera battery to charge.
More tomorrow. A&R
The day was quiet for the most part. I had a meeting in the morning and then was able to come home and spend the day with Roger while checking email, etc. We went to his pain doctor (doctor number 5-6...losing count) and tried to map out a modified drug program that would help make the really bad chemo days a little less bad. The ultimate goal being to get Roger to the point where he will eat and drink even a little. So, we will continue to experiment. I'll tell you this pain management thing - well hell, medicine in general - is interesting. Its not as precise as we'd like to believe. "Try this, don't do that, take more of this other thing, etc". So our modified plan for this weekend is a higher dose of narcotic and Ativan, the magic mellow-sleep drug (I really do wish they'd give some to the wife!!!) and hopefully Saturday and Sunday will be less hell. I'll let you know.
Today, as the day wore on, I watched Roger slowly fade....and today isn't even a "bad" day. He is getting more tired. The other thing which is kicking in is more sensitivity to cold. He brushed his teeth this morning (personal hygiene is a good thing) and his fingers grazed the water. He said it was like little needles stabbing his fingers and shooting pain up his hand/arm. Damn damn damn damn. I had hopes the extreme sensitivity would not kick in until Saturday or Sunday. Regardless, he kept trying to drink and did a decent job of eating. Its so hard to not "settle in" or get comfortable with the notion of him eating/drinking when you know, just around the corner he's going to be rolled up in a ball on the sofa for a couple days consuming nothing.
So, that's where we are for now. Its wonderful having sunshine and mild temps to help offset the chemo day. We were able to enjoy some of the weather as we sat in our back courtyard. I have 3 or 4 humming bird feeders scattered around. Roger noted the upside of chemo has been slowing life down a little to enjoy watching nature....chipmunks, humming birds and gold finches. Observation: gold finches just seem to be really happy, chirpy birds. They eat the hell out of my flowers but are gorgeous to see and hear. Humming birds, aka Hummies, aka Fairies are simply fascinating marvels of nature. Having said that, they are also some of the most aggressive territorial birds I've ever known. They chase each other and are very possessive of the feeders. We've even had them buzz us if we get near the feeders. Too funny. Smallest little bitty thing has a REALLY BIG ATTITUDE!!!!!!!!!!! I'll post a couple pictures tomorrow. Waiting for the camera battery to charge.
More tomorrow. A&R
Wednesday, August 10, 2011
Round three on board
Today marks the start of round 3 of chemo. Despite the fact it was the start of another round of chemo....it was an OK day. A long day....but an OK day. We went in at 9:00 and didn't leave until 3:30. Loooooooooong day. The oncology center was packed. Here's the scene: Everyone comes in has their vitals taken, blood drawn to see what your counts are, see the doctor to see if the treatment needs to be adjusted at all, and then eventually move to an infusion recliner chair. The infusion room is a large open room with very high ceilings with a natural wood finish. One wall is all windows facing out over a beautiful pond and garden. I always like to pick a seat near the window to day dream staring at the garden. Strangely, Roger does NOT like to be near the window. He said he hates watching the seasons change while going through chemo. I guess it makes sense when you think about it. So we usually compromise and pick a chair near the window for me but not immediately next to the window for Roger.
Even though you are doing something pretty freakin' horrible....chemo that is....it actually can be a humbling, even a heart-warming experience. One of the best ways of explaining is to share an experience today. Roger was hooked up to chemo. He had been given some Ativan which lets him sleep for the first half of the treatment ( I don't know WHY they don't give any to the spouse!!! I always ask) . The infusion room was loud with conversation. Nurses laughing and engaging patients and their family. As I sat there staring into space, smiling and even laughing to myself as I listened to the various conversations, I noticed the patient sitting across from us doing the same thing - listening, smiling and laughing. We both looked up and caught each other's eye mid-laugh. She said with a smile, "they are amazing people. This is an amazing place. Makes a horrible process almost seem good"...and she is absolutely right. We have NEVER been to the center without being greeted with HUGE hugs from all the nurses . Absurd as it sounds...it really is almost like going home.
Anyway, we are home and are on our way to hell. Tomorrow and Friday will be a slow decline. Roger is wearing a battery operated automatic pump now until Friday after lunch. The pump rhythmically releases small doses of chemo into Roger's system for 48 hours. Its a quiet, background hum. Ticks on. Ticks off. At the end of the cycle, Friday, we know we have two really horrible days ahead of us. So, we do what we can do. Hunker down and look forward to the good days which will EVENTUALLY come. With the onset of bad days comes the onset of a really really grouchy, short tempered Roger. One of the hard parts is remembering its the chemo....don't take it personally.
Roger has been eating non -stop since we have gotten home. He knows the nausea will settle in soon along with the exhaustion which translates into not eating and not drinking even with a bitchy nagging wife (which of COURSE he does NOT have, thank you very much).
His blood work is a little whacked. Nothing that drew any one's attention per se. Just strange. Usually his counts recover the week "off" chemo. We'll have to explore with his doctor.
Today, Dr. B told us he thought Roger was responding well to treatment. Dr. B. had been worried Roger wouldn't be able to tolerate any of the treatment. So, the doctor was pleased Roger was "tolerating". He further said, he thought Roger has been feeling so much better (post chemo hell) because the chemo is most likely kicking the cancer's butt. We'll know more after they run tests in a couple weeks. It will be a good news/bad news situation. The good news would be the chemo is reducing the tumors and actually erases the tumor. The bad news will be, "the chemo is working....you need to continue for at least another 4 months! possibly more" So, we're just going to try to take it one day at a time.
That's all for now. We're both pooped. Time for bed. Reboot, reset, start all over tomorrow.
~ Angie and Roger
Even though you are doing something pretty freakin' horrible....chemo that is....it actually can be a humbling, even a heart-warming experience. One of the best ways of explaining is to share an experience today. Roger was hooked up to chemo. He had been given some Ativan which lets him sleep for the first half of the treatment ( I don't know WHY they don't give any to the spouse!!! I always ask) . The infusion room was loud with conversation. Nurses laughing and engaging patients and their family. As I sat there staring into space, smiling and even laughing to myself as I listened to the various conversations, I noticed the patient sitting across from us doing the same thing - listening, smiling and laughing. We both looked up and caught each other's eye mid-laugh. She said with a smile, "they are amazing people. This is an amazing place. Makes a horrible process almost seem good"...and she is absolutely right. We have NEVER been to the center without being greeted with HUGE hugs from all the nurses . Absurd as it sounds...it really is almost like going home.
Anyway, we are home and are on our way to hell. Tomorrow and Friday will be a slow decline. Roger is wearing a battery operated automatic pump now until Friday after lunch. The pump rhythmically releases small doses of chemo into Roger's system for 48 hours. Its a quiet, background hum. Ticks on. Ticks off. At the end of the cycle, Friday, we know we have two really horrible days ahead of us. So, we do what we can do. Hunker down and look forward to the good days which will EVENTUALLY come. With the onset of bad days comes the onset of a really really grouchy, short tempered Roger. One of the hard parts is remembering its the chemo....don't take it personally.
Roger has been eating non -stop since we have gotten home. He knows the nausea will settle in soon along with the exhaustion which translates into not eating and not drinking even with a bitchy nagging wife (which of COURSE he does NOT have, thank you very much).
His blood work is a little whacked. Nothing that drew any one's attention per se. Just strange. Usually his counts recover the week "off" chemo. We'll have to explore with his doctor.
Today, Dr. B told us he thought Roger was responding well to treatment. Dr. B. had been worried Roger wouldn't be able to tolerate any of the treatment. So, the doctor was pleased Roger was "tolerating". He further said, he thought Roger has been feeling so much better (post chemo hell) because the chemo is most likely kicking the cancer's butt. We'll know more after they run tests in a couple weeks. It will be a good news/bad news situation. The good news would be the chemo is reducing the tumors and actually erases the tumor. The bad news will be, "the chemo is working....you need to continue for at least another 4 months! possibly more" So, we're just going to try to take it one day at a time.
That's all for now. We're both pooped. Time for bed. Reboot, reset, start all over tomorrow.
~ Angie and Roger
Tuesday, August 9, 2011
The eve of Round 3
(Roger earlier today)
What a big dog drag...here we are on the eve of round 3 of chemo. Roger had a good week last week. Gosh, we'd almost classify it as a great week!! He felt better than he has in a very very long time. His warped, twisted sense of humor made several appearances. It was soooooo much fun to see a little of old Roger back! So you fast forward to today, and you're kinda left with a sense of dread. I haven't asked him if he feels the same. Kinda hate to put thoughts in his mind which aren't there. We know what to expect with the chemo and the aftermath it leaves. Just gotta settle in.
What a big dog drag...here we are on the eve of round 3 of chemo. Roger had a good week last week. Gosh, we'd almost classify it as a great week!! He felt better than he has in a very very long time. His warped, twisted sense of humor made several appearances. It was soooooo much fun to see a little of old Roger back! So you fast forward to today, and you're kinda left with a sense of dread. I haven't asked him if he feels the same. Kinda hate to put thoughts in his mind which aren't there. We know what to expect with the chemo and the aftermath it leaves. Just gotta settle in.
(me earlier tonight)
Roger's weight is up a tiny little bit. He said he was up to 149!!! We keep shooting for 150 - just haven't made it there yet. Every chance I get I'm pushing burgers, leftovers, cookies, cake, candy...you name it...I'm pushin' it. Roger tries to cooperate and TRIES to eat the protein energy bars and drink the protein drinks I have been buying. Tonight, to that point, he took out one of the protein drinks from the frig. It is a strawberry - yogurt - granola flavor. Doesn't sound bad, right? I mean really? Doesn't sound bad at all. So, I hear the sound of the bottle being shaken. Then, I hear the sound the seal breaking on a plastic bottle. All good things. Then I hear "well, it doesn't smell as bad as the Boost or Ensure drink stuff" . I'm thinking everything is ok. I turn to see him taking a drink which is then followed by "EEEEEWWWWWWW!!!!!!! That tastes like alien ass!!!!!!!!!!" Um, WHAT?? "It tastes like alien ass!!!!!". Um, I give. HOW do you know what Alien Ass tastes like? Where the blazes did that come from?? I didn't bother asking for further clarification. Not only did I not want to know how or when he thought he came into contact with an alien....I also decided I did NOT want to know how he thought he knew what ass tasted like.
I managed to get our camera working again and have obviously included a couple pics above. I've also included several pics of new glass he has blown as well as one of his sculptures. Pretty cool stuff despite the fact I'm more than a little biased.
Will keep you posted on our trip back to chemo hell and the long crawl out of the hole. xxooxx~ A+R
Monday, August 8, 2011
Gone fishing?
What a luxury it would be to simply hang a sign in the window that read "gone fishing" ...is that gone fishing for the day? the week? the month? the year? or for good? Its one of those decadent, forbidden theoretic thoughts we randomly have. Sometimes the thought dances into our brain(s) on its own. Sometimes its escorted into our brains on the heals of a conversation with someone else.
When the return of Roger's cancer was detected in June of this year and we were told how serious the situation, we had the question enter brain of "what should we be doing with your time?"...especially coupled with the thought you may have limited time on this earth. As you sit and read this ask yourself the same. Its beyond the cliched sayings of what will people remember about you when your gone - the long hours you spent at work? - the b'jillions of dollars you made? Lets say you know you have limited time...WHAT do you do? Sell everything? Liquidate? Hold a bunch of bake sales? Save save save? Travel the world? What?? Ok Ok, its a bunch of rhetorical questions. No-win questions. We don't pretend to know the answers just that we know how to ask the questions.
We know we love each other and enjoy each other's company immensely...even when we bug the snot out of each other. Which DOES happen! Just because you have cancer or love someone who has cancer doesn't mean those little annoying habits are any less annoying!! My wise Aunt Sarah who cared for my grandmother and grandfather in their last days from debilitating diseases/ailments (Granddad had cancer) told me early on, "its ok to get irritated at the stuff you used to get annoyed about before Roger was diagnosed with cancer. Cancer doesn't erase all that stuff". This rule applies both directions for BOTH the cancer patient and the caregiver.
So, along the lines of the above gone fishing thought, Roger asked me the other night "what if?...how should our time be spent?" Hmmmm, I told him. A good question. Hanging the "Gone fishing" sign doesn't work when you need insurance. "Gone fishing" doesn't work when you have a mortgage(s), bills, responsibilities. It sounds romantic and down right delicious. "sorry, we've gone fishing". Is it realistic? pragmatic? possible? Not sure that we can answer that. What I can tell you is that I would do simply anything for my husband to make him as happy and comfortable as I humanly can...well short of the proverbial threesome (sorry guys).
So maybe a compromise to get closer to the "gone fishing" approach is to send Roger to Florida, to the sun and water in the cold winter months to recover from chemo. I must confess it distresses me greatly to think of us spending months apart, especially coupled with the thought time may be limited. Hell! What am I talking about?!?!?! It IS limited whether or not you have cancer!! For ALL of us!!! Hate to burst the bubble. None of us will live forever.
Anyway, blah blah blah. Just a lot of big random thoughts we've been having.
Today was an OK day for the most part. Roger felt a little puny unbeknown to me and ended up going into the infusion center for fluids. We both think he was probably dehydrated from the weekend. He received a bunch (2+ bags) of fluids and said he started to feel better soon thereafter. We need to be more diligent...or actually I guess I need to pay closer attention. I think we both let our guard down over the weekend and tried to "relax"...NOT a good thing when going through chemo.
This evening we went to dinner with my parents and my Aunt Evie and Uncle Dick who were in town from Wisconsin. It was a great evening filled with lots of food and tons of laughs. A priceless good moment on the eve of round three of chemo this Wednesday. Tomorrow we will be getting together with Roger's Uncle Larry and Aunts Jacki and Dottie. Should be another moment filled with endless laughter. You've heard me say it before and will repeat it often in the future - family and friends are hugely important to us and help us through the most difficult of moments. Roger and I have continued to receive cards/emails (thanks Jacki/Ben, Bill/Ev, Tom/Mary, Sarah/Ken, Kate/Joe, Katie/Joe, Jennifer, and EVERYONE), and texts (Tuty, Tina, Jacki, Julie, Bill, Suzy, Christy, Alice, Brad) and calls, and cool care packages including an awesome grabbag of goodies with an antique Italian picnic knife, and various other vintage goodies (thanks Tom and Mary!), a bucket of gourmet popcorn/candy yummies (thanks Mom and Dad) and a cool globe three-dimensional puzzle that should last all of chemo...6 pieces a day for 90 days...!( thanks Evie and Dick). Every expression of support from the notes and calls to the private prayers are all appreciated more than you will ever know...more than I can ever say. Thank you thank you.
So, enough blah blah blah for tonight. Make each day count...in the most meaningful way you can. Make sure your loved ones know they are loved. ~ A&R
When the return of Roger's cancer was detected in June of this year and we were told how serious the situation, we had the question enter brain of "what should we be doing with your time?"...especially coupled with the thought you may have limited time on this earth. As you sit and read this ask yourself the same. Its beyond the cliched sayings of what will people remember about you when your gone - the long hours you spent at work? - the b'jillions of dollars you made? Lets say you know you have limited time...WHAT do you do? Sell everything? Liquidate? Hold a bunch of bake sales? Save save save? Travel the world? What?? Ok Ok, its a bunch of rhetorical questions. No-win questions. We don't pretend to know the answers just that we know how to ask the questions.
We know we love each other and enjoy each other's company immensely...even when we bug the snot out of each other. Which DOES happen! Just because you have cancer or love someone who has cancer doesn't mean those little annoying habits are any less annoying!! My wise Aunt Sarah who cared for my grandmother and grandfather in their last days from debilitating diseases/ailments (Granddad had cancer) told me early on, "its ok to get irritated at the stuff you used to get annoyed about before Roger was diagnosed with cancer. Cancer doesn't erase all that stuff". This rule applies both directions for BOTH the cancer patient and the caregiver.
So, along the lines of the above gone fishing thought, Roger asked me the other night "what if?...how should our time be spent?" Hmmmm, I told him. A good question. Hanging the "Gone fishing" sign doesn't work when you need insurance. "Gone fishing" doesn't work when you have a mortgage(s), bills, responsibilities. It sounds romantic and down right delicious. "sorry, we've gone fishing". Is it realistic? pragmatic? possible? Not sure that we can answer that. What I can tell you is that I would do simply anything for my husband to make him as happy and comfortable as I humanly can...well short of the proverbial threesome (sorry guys).
So maybe a compromise to get closer to the "gone fishing" approach is to send Roger to Florida, to the sun and water in the cold winter months to recover from chemo. I must confess it distresses me greatly to think of us spending months apart, especially coupled with the thought time may be limited. Hell! What am I talking about?!?!?! It IS limited whether or not you have cancer!! For ALL of us!!! Hate to burst the bubble. None of us will live forever.
Anyway, blah blah blah. Just a lot of big random thoughts we've been having.
Today was an OK day for the most part. Roger felt a little puny unbeknown to me and ended up going into the infusion center for fluids. We both think he was probably dehydrated from the weekend. He received a bunch (2+ bags) of fluids and said he started to feel better soon thereafter. We need to be more diligent...or actually I guess I need to pay closer attention. I think we both let our guard down over the weekend and tried to "relax"...NOT a good thing when going through chemo.
This evening we went to dinner with my parents and my Aunt Evie and Uncle Dick who were in town from Wisconsin. It was a great evening filled with lots of food and tons of laughs. A priceless good moment on the eve of round three of chemo this Wednesday. Tomorrow we will be getting together with Roger's Uncle Larry and Aunts Jacki and Dottie. Should be another moment filled with endless laughter. You've heard me say it before and will repeat it often in the future - family and friends are hugely important to us and help us through the most difficult of moments. Roger and I have continued to receive cards/emails (thanks Jacki/Ben, Bill/Ev, Tom/Mary, Sarah/Ken, Kate/Joe, Katie/Joe, Jennifer, and EVERYONE), and texts (Tuty, Tina, Jacki, Julie, Bill, Suzy, Christy, Alice, Brad) and calls, and cool care packages including an awesome grabbag of goodies with an antique Italian picnic knife, and various other vintage goodies (thanks Tom and Mary!), a bucket of gourmet popcorn/candy yummies (thanks Mom and Dad) and a cool globe three-dimensional puzzle that should last all of chemo...6 pieces a day for 90 days...!( thanks Evie and Dick). Every expression of support from the notes and calls to the private prayers are all appreciated more than you will ever know...more than I can ever say. Thank you thank you.
So, enough blah blah blah for tonight. Make each day count...in the most meaningful way you can. Make sure your loved ones know they are loved. ~ A&R
Sunday, August 7, 2011
A quick post to say hello
I had every intention of posting before now. The weekend got away from me/us. Roger felt good and as a result...over did it Saturday. He had a friend here helping him build a shed next to our garage. Eric did all the heavy lifty but Roger did his share. Things that we all take for granted are a big deal for Roger - like standing on a step ladder painting. It takes a lot of core strength...something Roger doesn't have. As a result of over doing it, he was completely pooped, fatigued, worn out Saturday afternoon/evening and most of the day Sunday. My job on Sunday became my standard nagging of "what have you had to eat and drink...and eat and drink MORE". By the end of the night he was feeling better. Its such a pisser. You feel better and want to do more...and when you do more (or rather too much) you feel worse. Where is the justice?
Anyway, its past my bed time (roger just crawled into bed). The days seem to get longer as do the list of to-dos. Laundry is clean...just waiting the magic folding fairy to show up and put it all away. Fortunately, there's always tomorrow.
And tomorrow - or maybe later this week I'll post about a conversation we had about living in the moment and for the moment.
all the best. big hugs, angie & roger
Anyway, its past my bed time (roger just crawled into bed). The days seem to get longer as do the list of to-dos. Laundry is clean...just waiting the magic folding fairy to show up and put it all away. Fortunately, there's always tomorrow.
And tomorrow - or maybe later this week I'll post about a conversation we had about living in the moment and for the moment.
all the best. big hugs, angie & roger
Friday, August 5, 2011
A Cosmic Bully?
Do you think there is such a thing as a giant cosmic bully? One that runs around stealing your lunch money, kicking you in the shins, or worse yet kicking you in your private parts? There are days we often wonder about this. Likewise, we wonder about karma - good and bad. Back to this cosmic bully. There really might be one. Really. Only some bully would keep pulling our pony tails and knocking the books out of our arms. What am I talking about you ask??? We just found out that Roger's sister Denise, who has fought through TWO bouts of cancer over the last 20 years...has been diagnosed with round number THREE of cancer. Three separate instances of cancer...really. This comes on the heals of Roger's mom having been diagnosed with cancer....and of course, Roger having been diagnosed with cancer spreading. Honestly, what are the chances??? OK, sure Denise and Roger's mom have the cancer gene but REALLY? That's FIVE (six if you count Roger's spreading cancer) bouts of cancer. Completely insane! Denise thinks they have to have some sort of Guinness Book of World Records-thing going. She's probably right.
Roger's comment about the whole situation is that he - they - we - are all numb to it. The punch in the gut you feel the first time or two just isn't there. You're just kinda numb and you say repeatedly "this just cannot be".
Keep a look out for this Cosmic Bully and turn the other direction to avoid him!
Despite the above, it was, for the most part, a good week. Roger felt better than he has for MONTHS, hell, better than he has for almost 2 years! He ate, and ate and ate. His weight is up. Well, its up for him as of late. He now weighs in at a whopping 148 pounds! The week included having dinner with our friends Brad and Julie - we grilled out pizza in the backyard. Roger felt good enough during the week to go to the boat and work on projects. He also worked on a shed we are having built here at the house. Roger also had enough energy to blow glass (I'll try to take some pictures to share). And, more than that....Roger was just plain ol' happy and chipper. I know. I know. It must all sound pretty simple and pretty silly but I gotta tell you, when you are in the throes of cancer and chemo and the day to day stuff is pretty darn daunting, then these silly, simple moments are pure heaven. This week at work when someone asked me about how Roger was doing, all I could do was smile endlessly and respond with an enthusiastic "it is a GREAT week..he feels good!"
Tomorrow we plan on doing yard work and shed work and then later in the afternoon trying to get together with my friends Susie and Rudy for an early dinner. Essentially squeeze in as much good stuff as we can before the next round of chemo scheduled for this coming Wednesday.
I hope to upload some photos soon but my camera is on the blink.
hugs to all. A & R
Roger's comment about the whole situation is that he - they - we - are all numb to it. The punch in the gut you feel the first time or two just isn't there. You're just kinda numb and you say repeatedly "this just cannot be".
Keep a look out for this Cosmic Bully and turn the other direction to avoid him!
Despite the above, it was, for the most part, a good week. Roger felt better than he has for MONTHS, hell, better than he has for almost 2 years! He ate, and ate and ate. His weight is up. Well, its up for him as of late. He now weighs in at a whopping 148 pounds! The week included having dinner with our friends Brad and Julie - we grilled out pizza in the backyard. Roger felt good enough during the week to go to the boat and work on projects. He also worked on a shed we are having built here at the house. Roger also had enough energy to blow glass (I'll try to take some pictures to share). And, more than that....Roger was just plain ol' happy and chipper. I know. I know. It must all sound pretty simple and pretty silly but I gotta tell you, when you are in the throes of cancer and chemo and the day to day stuff is pretty darn daunting, then these silly, simple moments are pure heaven. This week at work when someone asked me about how Roger was doing, all I could do was smile endlessly and respond with an enthusiastic "it is a GREAT week..he feels good!"
Tomorrow we plan on doing yard work and shed work and then later in the afternoon trying to get together with my friends Susie and Rudy for an early dinner. Essentially squeeze in as much good stuff as we can before the next round of chemo scheduled for this coming Wednesday.
I hope to upload some photos soon but my camera is on the blink.
hugs to all. A & R
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