Really Really Bad = pain, achy, flu-y symptoms on steroids, no movement from the sofa, little or no eating, little or no drinking, nausea, vomiting, and a whole lotta grumpy
Really Bad = pain, achy, flu-y feeling, little movement from the sofa. little eating/drinking, nausea, random limited vomiting, and a whole lotta grumpy
Bad = pain, achy, movement from the sofa, eating and drinking, nausea, no vomiting, diarrhea, and a some grumpy
Less Bad = pain, active, eating/drinking, random nausea, no vomiting, random diarrhea, and yep, grumpy
Ok = pain, everything from Less Bad, not quite diarrhea, stomach is icky, and mood is not grumpy... possibly even pleasant
Good day = ......not really sure .....
Today? Between Bad and Really Bad. It will be a very quiet weekend. We're predicting tomorrow will be the worst of the bad days. Layer on that I have managed to catch a cold. waaaaahhhhhhh! I've tried whining to the cats to no avail... I find myself walking around the house with anti-bacterial sanitizer or Lysol wipes or bleach wipes to wipe down anything I touch if I haven't sanitized my own hands. Howard Hughes aint got nothin' on me!!! We're quite the pair, huh?
We did manage to go for a walk yesterday and today. Interesting thing about this evening's walk: the temperature dropped substantially during the day. It was a full-on Fall, blustery (Winnie the Poo would say) day. Leaves were falling, sky was gray and it was quiet simply COLD. Half way through the walk, Roger said the chemo cold sensitivity was in his fingers and hands as usual but now was also in his nose and forehead and cheeks. Felt like needles prickling his face. NOT a good feeling. We moved quickly to get out of the wind and find the shelter of the house. Its such a drag because we know moving/walking is one of the best things Roger can do to move the chemicals in his body and try to move them OUT of his body and now we know that walking outside can be a painful experience. I tried suggesting that we could become "Mall Walkers"....(and I could shop in the process)....the suggestion was met with a scowl. Plan B? Treadmill in the basement.
Roger's sister Denise, is recuperating well. When she was released from the hospital, she stayed with their mother for several days. Yesterday she finally went to her home. She is up and moving. She had been walking with a walker but no longer needs it. Her prognosis is good. Cancer has not spread to lymph nodes. It was just in the kidney and urter. So, those organs have been removed. No chemo, no radiation. They will continue to monitor her, like Roger, on a 3-month schedule.
Will post again as the weekend melts away. ~ a
Friday, September 30, 2011
Wednesday, September 28, 2011
The buzz buzz buzz of a busy oncology center
Wednesdays seem to be sheer madness at the oncology center. Apparently a couple doctors (including Roger's) all load up their patients on Wednesdays. It gets so bad that sometime you can't find a recliner for the infusion. When you have to sit for 5+ hours during an infusion....a straight back side chair is NOT the way to spend hours of sitting. We were fortunate (fortunate? Really? um, no) to get here early enough to get a chair. Of course the doctor was running late which still meant we had some chair time in uncomfortable side chairs while we waited.
The doctor was a little startled to see that Roger hadn't had a better recovery from the last round of chemo. He is puny, pale, and simply doesn't feel good. Roger's doctor had expected a much improved Roger since we reduced the dosage of chemo by 20% from the original dosage. So, the doctor said we are going to continue with the reduced dosage but are now going to try going on a 3-week schedule instead of the 2-week schedule. The hope is that Roger's quality of life will improve while still staying the course for treatment. The doctor said he is worried that if we stayed on the 2-week schedule based on how Roger looked and sounded today that Roger would end up in the hospital...and recovery from that would be even worse. While we all would prefer to stay as close to the originally prescribed chemo protocol to better insure annihilation of the cancer (ok, I know that's a little dramatic of a word but its what I like to envision), Roger just doesn't seem to be able to handle it.
Each and every trip to the oncology center has a profound impact. Good, bad, emotionally stirring....you name it. Today, once Roger was hooked up and snoozing a little (he didn't sleep much last nite), the nurses were off tending to other patients. I had gotten the laptop out and was in the process of whittling away at my email. In our area, I heard one of the nurses chirp to a patient "its good to see you!! But what are you doing here??? We haven't seen you for a long time." The patient and his wife responded with much heaviness and tears in their eyes that the last treatment didn't take. So, they are back for more....I remember too well. Your heart ends up in your throat. Your head is screaming "NO!! We did this already and it was supposed to have gotten rid of the cancer!" All the while you try to maintain a brave front. The amazing nurses give you an understanding look, a giant hug, and words of encouragement that they will be with you every step of the way. And somehow, someway, you managed to catch your breath sit down and will your way into the start of chemo. You can usually tell the brand new patients as well as those just returning...once they are hooked up the patient and family/friend sit staring into space lost in thought. Seems to happen every time.
The especially hard part for the brand new patients (been there done that) is how you are bombarded with information about the treatment, the drugs, and the whole thing. The nurses sit down with patient and caregiver to explain all the drugs, side effects, what to look for, how you might feel, etc. Its a ton of info and sooo very hard to remember and understand. I wish they would do not only the first time but a couple treatments in...once the sheer horror of the treatment has worn off a little. Never goes a way....just lessens.
There you have it. Life as we know it for now. Will post along the way on our trip to hell...and the trip back out. Keep sending all those positive thoughts this way. xoxoxo, a
The doctor was a little startled to see that Roger hadn't had a better recovery from the last round of chemo. He is puny, pale, and simply doesn't feel good. Roger's doctor had expected a much improved Roger since we reduced the dosage of chemo by 20% from the original dosage. So, the doctor said we are going to continue with the reduced dosage but are now going to try going on a 3-week schedule instead of the 2-week schedule. The hope is that Roger's quality of life will improve while still staying the course for treatment. The doctor said he is worried that if we stayed on the 2-week schedule based on how Roger looked and sounded today that Roger would end up in the hospital...and recovery from that would be even worse. While we all would prefer to stay as close to the originally prescribed chemo protocol to better insure annihilation of the cancer (ok, I know that's a little dramatic of a word but its what I like to envision), Roger just doesn't seem to be able to handle it.
Each and every trip to the oncology center has a profound impact. Good, bad, emotionally stirring....you name it. Today, once Roger was hooked up and snoozing a little (he didn't sleep much last nite), the nurses were off tending to other patients. I had gotten the laptop out and was in the process of whittling away at my email. In our area, I heard one of the nurses chirp to a patient "its good to see you!! But what are you doing here??? We haven't seen you for a long time." The patient and his wife responded with much heaviness and tears in their eyes that the last treatment didn't take. So, they are back for more....I remember too well. Your heart ends up in your throat. Your head is screaming "NO!! We did this already and it was supposed to have gotten rid of the cancer!" All the while you try to maintain a brave front. The amazing nurses give you an understanding look, a giant hug, and words of encouragement that they will be with you every step of the way. And somehow, someway, you managed to catch your breath sit down and will your way into the start of chemo. You can usually tell the brand new patients as well as those just returning...once they are hooked up the patient and family/friend sit staring into space lost in thought. Seems to happen every time.
The especially hard part for the brand new patients (been there done that) is how you are bombarded with information about the treatment, the drugs, and the whole thing. The nurses sit down with patient and caregiver to explain all the drugs, side effects, what to look for, how you might feel, etc. Its a ton of info and sooo very hard to remember and understand. I wish they would do not only the first time but a couple treatments in...once the sheer horror of the treatment has worn off a little. Never goes a way....just lessens.
There you have it. Life as we know it for now. Will post along the way on our trip to hell...and the trip back out. Keep sending all those positive thoughts this way. xoxoxo, a
Monday, September 26, 2011
Round 6
Another Monday gone and my thoughts drift to the coming storm. Wednesday will mark the start of chemo round 6. Despite having an extra week "off" prior to starting round 5 and despite having a reduced chemo dosage (approximately 20% less), Roger has had a tough time recovering from this last round. The bad was "less bad" but wasn't good or even decent by any stretch of imagination. Roger had many quiet days on the sofa. He wasn't rolled up in a ball as much as he has been...at least not on the days we would have normally expected. We both had hopes there would be multiple good days. Instead it was multiple bad days. We thought Roger had dodged the diarrhea issues...not the case. That little side effect was just delayed in making its appearance. Roger's weight still hovers around 145 +/-.
Its all just so damn frustrating. We went into the last round thinking it MIGHT be "better" (whateverthehell that is) and had our hope dashed. And so, I find myself starting to get anxious the closer we get to this next round.
We are now grappling with the fact that Summer has literally evaporated and we are staring Fall square in the eyes. Based on what we've seen so far....I don't think a warm Indian summer is store...so Roger layers up in jeans, t-shirts, flannel shirts, and sweatshirts to stave off the cold. With the realization that Summer is gone we additionally realize there is limited time to get the boat and jetskis battened down for the winter. Forget being disappointed at not spending much time on the boat over the summer...no time for that. Roger is making plans to move the boat to a covered slip near Vevay/Madison IN. The benefit of doing so is that we won't have to have the boat covered and shrink-wrapped to protect from the elements over the winter and the slip is close to my parents' river home. We figure they may be able to check on the boat during the winter when Roger is recuperating down in Florida. The practical implication - logistics- of the plan to move the boat to a new slip is that we have to physically move the boat 4-5 hours upriver, through the lock system, and get the jetski out of the water...all during the rare, few days Roger feels good. So, we are trying to plan or attempting to predict when those random few days may be.
Its really tough to realize summer is gone. Time is ticking away. I know I know. Time seems to stand still and NEVER moves when we're kids. Now that we're all grown up...time simply flies by. I'm still looking for the switch to flick and freeze time, freeze life in a moment and make no further movement forward. For that matter, I'd like to find the dial on the clock that would let me turn it all back and get my carefree, happy, healthy hubby back. If someone knows where the clock is...please let me know.
I did end up going to Miami for my work conference last week. It was a good trip but also exceptionally difficult for me. I hate hate hate leaving Roger when I know he doesn't feel well which is all the time any more. So my trip was mixed. There were good meetings and networking opportunities, good dinners and fun events but all of that was set against the backdrop of my anxiety and concern for Roger mixed with guilt. I managed to have lunch with Roger's Uncle Larry. Always great to catch up with family! (Thanks Larry!!)
So that's where we are today. Roger is sitting across from me watching the magic zombie maker...TV....annoying late night TV. I wanted to get an update posted here since I've been remiss in updating you. I'm off to prepare for a presentation for tomorrow. hugs to all of you. a & r
Its all just so damn frustrating. We went into the last round thinking it MIGHT be "better" (whateverthehell that is) and had our hope dashed. And so, I find myself starting to get anxious the closer we get to this next round.
We are now grappling with the fact that Summer has literally evaporated and we are staring Fall square in the eyes. Based on what we've seen so far....I don't think a warm Indian summer is store...so Roger layers up in jeans, t-shirts, flannel shirts, and sweatshirts to stave off the cold. With the realization that Summer is gone we additionally realize there is limited time to get the boat and jetskis battened down for the winter. Forget being disappointed at not spending much time on the boat over the summer...no time for that. Roger is making plans to move the boat to a covered slip near Vevay/Madison IN. The benefit of doing so is that we won't have to have the boat covered and shrink-wrapped to protect from the elements over the winter and the slip is close to my parents' river home. We figure they may be able to check on the boat during the winter when Roger is recuperating down in Florida. The practical implication - logistics- of the plan to move the boat to a new slip is that we have to physically move the boat 4-5 hours upriver, through the lock system, and get the jetski out of the water...all during the rare, few days Roger feels good. So, we are trying to plan or attempting to predict when those random few days may be.
Its really tough to realize summer is gone. Time is ticking away. I know I know. Time seems to stand still and NEVER moves when we're kids. Now that we're all grown up...time simply flies by. I'm still looking for the switch to flick and freeze time, freeze life in a moment and make no further movement forward. For that matter, I'd like to find the dial on the clock that would let me turn it all back and get my carefree, happy, healthy hubby back. If someone knows where the clock is...please let me know.
I did end up going to Miami for my work conference last week. It was a good trip but also exceptionally difficult for me. I hate hate hate leaving Roger when I know he doesn't feel well which is all the time any more. So my trip was mixed. There were good meetings and networking opportunities, good dinners and fun events but all of that was set against the backdrop of my anxiety and concern for Roger mixed with guilt. I managed to have lunch with Roger's Uncle Larry. Always great to catch up with family! (Thanks Larry!!)
So that's where we are today. Roger is sitting across from me watching the magic zombie maker...TV....annoying late night TV. I wanted to get an update posted here since I've been remiss in updating you. I'm off to prepare for a presentation for tomorrow. hugs to all of you. a & r
Monday, September 19, 2011
chemo chemo chemo
And so the song goes. Ok, its not a song. As you've read, we are in the midst of chemo-hell. A familiar place. The fog doesn't seem as thick as the prior round of chemo. We will be happy to be out of chemo hell....as soon as possible. There is a distinct difference in this round compared to last. Not nearly as dark. Not nearly as heavy. Still chemo but at least it didn't leave us both staggering from the lack of air.
Weekend was quiet as expected. Roger spent most of the time on the sofa. Only a couple days of horrible nausea and vomiting. Rest of the time was flu-y achy complete exhaustion. I managed to convince him to take a couple walks. We took one this evening between rain showers. There was a heavy haze in the air from all the moisture. As we neared our driveway and the end of the walk, we both ducked on the ump-teenth tree limb that was hanging over the sidewalk heavy with rain. As we ducked under the last tree bough, I shared, "each time you duck under the tree limbs to avoid the wet leaves, I've been DYING to grab the limb and shake it like crazy to drench you with rain." He laughed and said he had been thinking the exact same thing and that the reason we both must have opted to NOT is that it would have been a really wet walk home as we each tried to get even with each other. Wow, we are junior old people! It never would have stopped us before.
The chemo menu for the past several days...hold on to your hats you health conscious followers: McDonalds McGriddle for breakfast (um, GROSS!!) , McDonalds Yogurt Parfait (a small attempt at nutrition), Taco Bell Taco Bell Taco Bell, Kentucky Fried Chicken, Wendy's chili, and Steak & Shake burgers. Our arteries are most likely closing in. Roger's skinny butt is still skinny....mine on the other hand...well, lets just say expanding one's mind is a good thing...expanding one's behind....not so good.
We're hoping Roger feels well enough to go down to the boat for a day or two while I'm in Miami. Will know more tomorrow.
Roger's sister is still in ICU. Friday they removed her kidney and urter. Cancer claims a few more organs. In our dark, little twisted, not-right-world....we are building a cancer frankenstein with all the family organs...a left kidney and right kidney (Roger's mom and sister), a stomach (Roger's sister), colon (Roger's sister), gallbladder (Roger), esophagus (Roger). Ok, I know its totally bad taste....but isn't it just too bizarre??? A very very dark not funny comedy.
Thats Monday in the Wethington household. xxooxxoo~ a
Weekend was quiet as expected. Roger spent most of the time on the sofa. Only a couple days of horrible nausea and vomiting. Rest of the time was flu-y achy complete exhaustion. I managed to convince him to take a couple walks. We took one this evening between rain showers. There was a heavy haze in the air from all the moisture. As we neared our driveway and the end of the walk, we both ducked on the ump-teenth tree limb that was hanging over the sidewalk heavy with rain. As we ducked under the last tree bough, I shared, "each time you duck under the tree limbs to avoid the wet leaves, I've been DYING to grab the limb and shake it like crazy to drench you with rain." He laughed and said he had been thinking the exact same thing and that the reason we both must have opted to NOT is that it would have been a really wet walk home as we each tried to get even with each other. Wow, we are junior old people! It never would have stopped us before.
The chemo menu for the past several days...hold on to your hats you health conscious followers: McDonalds McGriddle for breakfast (um, GROSS!!) , McDonalds Yogurt Parfait (a small attempt at nutrition), Taco Bell Taco Bell Taco Bell, Kentucky Fried Chicken, Wendy's chili, and Steak & Shake burgers. Our arteries are most likely closing in. Roger's skinny butt is still skinny....mine on the other hand...well, lets just say expanding one's mind is a good thing...expanding one's behind....not so good.
We're hoping Roger feels well enough to go down to the boat for a day or two while I'm in Miami. Will know more tomorrow.
Roger's sister is still in ICU. Friday they removed her kidney and urter. Cancer claims a few more organs. In our dark, little twisted, not-right-world....we are building a cancer frankenstein with all the family organs...a left kidney and right kidney (Roger's mom and sister), a stomach (Roger's sister), colon (Roger's sister), gallbladder (Roger), esophagus (Roger). Ok, I know its totally bad taste....but isn't it just too bizarre??? A very very dark not funny comedy.
Thats Monday in the Wethington household. xxooxxoo~ a
Wednesday, September 14, 2011
Test results are in
After several days of angst and may days of silence lost in thought, we finally met with Dr. Birhirray this morning to find out the results of Roger's CT scan. Dr. B, who is an upbeat friendly guy anyway, was positively glowing. He announced upon entering the room that he had good news for us! The tumors appear to be shrinking from the chemo (chemo is kicking cancer's butt!!). It looks like all of the tumors have been responsive and the nasty poison we call chemo is doing its job. Roger's blood work all looked good. I've got a copy of the test results and will try to translate from medical-speak to mere mortal-speak to make sure we understand everthing. The morning is off to a good start.
After talking about the test results, we covered how the last treatment went (HORRIBLE) and how Roger has been feeling lately. Dr. B thinks part of the reason Roger has felt crummy over the last several days may in part be due to the anxiety of getting the test results. We both agree ...that probably had a lot more impact than we realize. As for the really bad days from chemo, Dr. B said we are going to try reducing the dosage of the chemo in an attempt to increase quality of life. He doesn't believe it will negatively impact the effectiveness of the treatment but does believe it will give more "good" days and less "bad" days. It was interesting. As Dr. B made the suggestion, Roger challenged the approach saying he didn't want to reduce the overall effectiveness of the treatment even if it means he feels like sh#t for several days. Makes me smile to hear the tenacity especially when I painfully remember him saying two weeks ago (during one of those really, really bad moments) that he didn't think he could continue with the treatment much longer. This is part of the roller coaster ride. There are actually two roller coasters....one the patient is on and one the caregiver is one. The caregiver hears and absorb everything the patient says.... the good, the bad, the ugly. Many times, the patient doesn't remember saying or feeling that way. In this case, Roger doesn't recall saying he would ever consider stopping treatment. So many lessons to learn a long the way. Much of it is based in an exercise of tenacity....tenancity of the patient to endure the un-endurable (a word?) and tenacity of the caregiver to give care, listen, absorb, and when appropriate...forget.
Roger will continue with chemo for 12 treatments. I anticipate this will carry us through the end of the year. Its staggering to know the journey started 2 years ago and has never really changed or improved much. Likewise, its hard to reflect back knowing how outwardly health, happy, and CHUBBY Roger was when the cancer was discovered by chance... and knowing where we are now...all in the pursuit of a longer life. What a contradiction, right? By all outward appearances, 2 years ago, Roger seemed healthy as a horse. Drank too much, ate too much, lived a FULL life. He goes into treatment for cancer and now he no longer eats or drinks (let alone too much) and has a much more sedate life. So, I don't really allow myself to look back that much. The past is the past. Now is where we are and now is all that matters.
We had a funny moment this morning once we moved to the infusion area. As Denise, Roger's nurse, was getting his meds and fluids set up and hooking up his IV, Roger was sharing with her the positive test results. I had stepped away to fetch a blanket and pillow for Roger. Upon returning, Denise turned to me and said "I hear we have good news! there is shrinkage!" I responded that shrinkage for cancer IS good news...but shrinkage anywhere else ...NOT good news for a man, and fortunately Roger wasn't experiencing that kind of shrinkage. Hell, I don't know where that came from but it just blurted out of my unfiltered mouth (its much more the kind of thing Roger would say). As the laughter and giggling around us picked up from the neighboring chemo patient and her brother, and Denise, I realized what I said. Roger was pink with laughter. Opps! honestly, it just came out. I offered apologies. The patient's brother across from us laughed and said, "oh no. Man. She just gave you a biggest and best shout out a guy could get!" Oh, lord. what have I done?
With the buzz of conversation in the back ground, and twenty some-odd IV poles standing like flag poles throughout the infusion room with different chemo banners waving, Roger is dozing away waking periodically to lift his drooping head or startling himself awake from snoring. We are on the road to chemo hell - should reach bottom on Saturday. And as before with every other treatment, climb the way back out Monday and Tuesday. I am scheduled to attend a company conference in Miami this coming Wed - Fri. Am playing it by ear depending on how things go with chemo.
Keep your fingers crossed for my hubby and keep sending all the good positive thoughts his way. They are working! much love, a
After talking about the test results, we covered how the last treatment went (HORRIBLE) and how Roger has been feeling lately. Dr. B thinks part of the reason Roger has felt crummy over the last several days may in part be due to the anxiety of getting the test results. We both agree ...that probably had a lot more impact than we realize. As for the really bad days from chemo, Dr. B said we are going to try reducing the dosage of the chemo in an attempt to increase quality of life. He doesn't believe it will negatively impact the effectiveness of the treatment but does believe it will give more "good" days and less "bad" days. It was interesting. As Dr. B made the suggestion, Roger challenged the approach saying he didn't want to reduce the overall effectiveness of the treatment even if it means he feels like sh#t for several days. Makes me smile to hear the tenacity especially when I painfully remember him saying two weeks ago (during one of those really, really bad moments) that he didn't think he could continue with the treatment much longer. This is part of the roller coaster ride. There are actually two roller coasters....one the patient is on and one the caregiver is one. The caregiver hears and absorb everything the patient says.... the good, the bad, the ugly. Many times, the patient doesn't remember saying or feeling that way. In this case, Roger doesn't recall saying he would ever consider stopping treatment. So many lessons to learn a long the way. Much of it is based in an exercise of tenacity....tenancity of the patient to endure the un-endurable (a word?) and tenacity of the caregiver to give care, listen, absorb, and when appropriate...forget.
Roger will continue with chemo for 12 treatments. I anticipate this will carry us through the end of the year. Its staggering to know the journey started 2 years ago and has never really changed or improved much. Likewise, its hard to reflect back knowing how outwardly health, happy, and CHUBBY Roger was when the cancer was discovered by chance... and knowing where we are now...all in the pursuit of a longer life. What a contradiction, right? By all outward appearances, 2 years ago, Roger seemed healthy as a horse. Drank too much, ate too much, lived a FULL life. He goes into treatment for cancer and now he no longer eats or drinks (let alone too much) and has a much more sedate life. So, I don't really allow myself to look back that much. The past is the past. Now is where we are and now is all that matters.
We had a funny moment this morning once we moved to the infusion area. As Denise, Roger's nurse, was getting his meds and fluids set up and hooking up his IV, Roger was sharing with her the positive test results. I had stepped away to fetch a blanket and pillow for Roger. Upon returning, Denise turned to me and said "I hear we have good news! there is shrinkage!" I responded that shrinkage for cancer IS good news...but shrinkage anywhere else ...NOT good news for a man, and fortunately Roger wasn't experiencing that kind of shrinkage. Hell, I don't know where that came from but it just blurted out of my unfiltered mouth (its much more the kind of thing Roger would say). As the laughter and giggling around us picked up from the neighboring chemo patient and her brother, and Denise, I realized what I said. Roger was pink with laughter. Opps! honestly, it just came out. I offered apologies. The patient's brother across from us laughed and said, "oh no. Man. She just gave you a biggest and best shout out a guy could get!" Oh, lord. what have I done?
With the buzz of conversation in the back ground, and twenty some-odd IV poles standing like flag poles throughout the infusion room with different chemo banners waving, Roger is dozing away waking periodically to lift his drooping head or startling himself awake from snoring. We are on the road to chemo hell - should reach bottom on Saturday. And as before with every other treatment, climb the way back out Monday and Tuesday. I am scheduled to attend a company conference in Miami this coming Wed - Fri. Am playing it by ear depending on how things go with chemo.
Keep your fingers crossed for my hubby and keep sending all the good positive thoughts his way. They are working! much love, a
Tuesday, September 13, 2011
Anxiety anxiety
Its been building for the past couple days. Basically since last Thursday, the day before Roger's CT scan, we've both felt more and more anxious...anxiety increasing...all because of one little test. We find out the CT test results tomorrow. I've always maintained throughout the last two years that knowledge is power. We will have more power after knowing the test results. Sounds good, right? Plausible? Sure. Despite knowing this, its hard to not be nervous about the appt with the doctor tomorrow. Its such a different world from where we were two years ago when Roger's cancer was diagnosed.
I'll blog from the oncology center tomorrow once Roger is hooked up to his next chemo treatment. Will let you know what we find out. Keep sending positive vibes our way. xxooxx ~ a
I'll blog from the oncology center tomorrow once Roger is hooked up to his next chemo treatment. Will let you know what we find out. Keep sending positive vibes our way. xxooxx ~ a
Sunday, September 11, 2011
For the most part, it was a good week finished by a good weekend...but was fraught with mixed emotions throughout. The week and the weekend were full of family. As predicted, loads of laughs and a few tears mixed in. Last Thursday was dinner with Roger's family - sister, mother and significant others as well as Roger's nephew Adam. They all have a bunch of birthdays in and around the Fall time period so it was a birthday celebration. It also marked a week before Roger's sister's surgery. This Thursday his sister is having her kidney and urter removed. They will then be able to determine if there is cancer in the lymph nodes. The mere thought takes your breath away. You try to stay focused on the good stuff and each other's company.
We then spent time with my side of the family over the weekend. We drove up to South Bend Friday night and returned home earlier today. Dad is one of 8 kids. Six of the eight and their spouses turned out to celebrate several different siblings' birthdays as well as my Aunt Charlotte's retirement. More laughs galore. We had a limerick contest (I'm told there were 60 limericks submitted!) - you were supposed to write a limerick about someone in the family, living or deceased. So, as you can imagine with brothers and sisters there was endless ribbing and teasing. Many many raunchy rhymes, inside jokes, and distant memories brought back to life. Silly but funny stuff. Much of the family hadn't seen the now much skinnier Roger. 80-90 lbs less makes for one skinny guy! He's gone from a 34-36" waist to now 31-32" waist and XL-XXL shirts are now Mediums. I practically have to shop in the young men's department to find new clothes for him.
Spending time with family really helps recharge the batteries. At least for us it does. Good food, conversation, hugs, and laughter. Doesn't remove all the bad stuff...just makes it somehow more tolerable. I'm absolutely overwhelmed by the love and support and the tremendous generosity of our families and find myself consumed with emotion at the outpouring of support.
As we were driving back to Indy this afternoon, there was a heaviness...anxiousness... in the car with us. Roger eventually said, " I've been trying to play out all the possible scenarios of our appointment with Dr Birrhiray." You see, this Wednesday we get the results of Roger's CT scan from Friday. I know the test has been weighing heavy on our minds. So, I followed up on his statement to find out what the scenarios were. His response: " I can come up with 3 possibilities...the cancer is smaller....the cancer is the same....or its gotten bigger/spread." Well, yes. Those are the possible scenarios. And with each scenario we discussed what the potential treatment path might be. We didn't spend much more time on the topic because we really don't know what the course of treatment will be because we have no way of knowing the test results....and the topic seemed to suck all the oxygen out of the car. We both became lost in our own thoughts. Roger eventually dozed off (no worries...I was driving!) and I tried to stay focused on NOT getting a speeding ticket while trying to keep my brain decidedly in neutral, devoid of all other thoughts. I was successful at avoiding the ticket. I wasn't so successful at avoiding heavy thoughts.
We're both a little pooped. Roger hasn't been sleeping well for several nights. He wakes up several times throughout the night, sometimes has to vomit, many times just wakes with pain or discomfort. So, it makes for sleeping in fits and starts. We are both physically tired and emotionally tired. We'll get through it. We just may be short of patience in the process.
Roger has been feeling the coolness in the air...chilling to his bones (remember sensitivity to cold is one of the chemo side effects) . Saturday afternoon I walked into our hotel room (Roger had been in the room watching TV, I was off with family). I walked into a freakin' sauna...it was 82 degrees!!!! AND Roger was sitting in jeans with a long sleeve shirt AND a blanket. Good grief. I about melted. I peeled off as much clothing as I could and finally gave up and surrendered to a cold shower.
Well, I just looked over at Roger snoozing in his chair. Time to go to bed. Many big hugs to our family. We love you all!!! Thanks for several fabulous days. ~a
We then spent time with my side of the family over the weekend. We drove up to South Bend Friday night and returned home earlier today. Dad is one of 8 kids. Six of the eight and their spouses turned out to celebrate several different siblings' birthdays as well as my Aunt Charlotte's retirement. More laughs galore. We had a limerick contest (I'm told there were 60 limericks submitted!) - you were supposed to write a limerick about someone in the family, living or deceased. So, as you can imagine with brothers and sisters there was endless ribbing and teasing. Many many raunchy rhymes, inside jokes, and distant memories brought back to life. Silly but funny stuff. Much of the family hadn't seen the now much skinnier Roger. 80-90 lbs less makes for one skinny guy! He's gone from a 34-36" waist to now 31-32" waist and XL-XXL shirts are now Mediums. I practically have to shop in the young men's department to find new clothes for him.
Spending time with family really helps recharge the batteries. At least for us it does. Good food, conversation, hugs, and laughter. Doesn't remove all the bad stuff...just makes it somehow more tolerable. I'm absolutely overwhelmed by the love and support and the tremendous generosity of our families and find myself consumed with emotion at the outpouring of support.
As we were driving back to Indy this afternoon, there was a heaviness...anxiousness... in the car with us. Roger eventually said, " I've been trying to play out all the possible scenarios of our appointment with Dr Birrhiray." You see, this Wednesday we get the results of Roger's CT scan from Friday. I know the test has been weighing heavy on our minds. So, I followed up on his statement to find out what the scenarios were. His response: " I can come up with 3 possibilities...the cancer is smaller....the cancer is the same....or its gotten bigger/spread." Well, yes. Those are the possible scenarios. And with each scenario we discussed what the potential treatment path might be. We didn't spend much more time on the topic because we really don't know what the course of treatment will be because we have no way of knowing the test results....and the topic seemed to suck all the oxygen out of the car. We both became lost in our own thoughts. Roger eventually dozed off (no worries...I was driving!) and I tried to stay focused on NOT getting a speeding ticket while trying to keep my brain decidedly in neutral, devoid of all other thoughts. I was successful at avoiding the ticket. I wasn't so successful at avoiding heavy thoughts.
We're both a little pooped. Roger hasn't been sleeping well for several nights. He wakes up several times throughout the night, sometimes has to vomit, many times just wakes with pain or discomfort. So, it makes for sleeping in fits and starts. We are both physically tired and emotionally tired. We'll get through it. We just may be short of patience in the process.
Roger has been feeling the coolness in the air...chilling to his bones (remember sensitivity to cold is one of the chemo side effects) . Saturday afternoon I walked into our hotel room (Roger had been in the room watching TV, I was off with family). I walked into a freakin' sauna...it was 82 degrees!!!! AND Roger was sitting in jeans with a long sleeve shirt AND a blanket. Good grief. I about melted. I peeled off as much clothing as I could and finally gave up and surrendered to a cold shower.
Well, I just looked over at Roger snoozing in his chair. Time to go to bed. Many big hugs to our family. We love you all!!! Thanks for several fabulous days. ~a
Wednesday, September 7, 2011
A Bi- week
This week would normally mark the start of another chemo week. We are getting a "bi" week with chemo postponed until Wednesday of next week. Roger's oncologist, Dr. B, said an extra "off" week would not be harmful to the treatment. After how bad last week was....I'm happy to have an extra week off. And a bad week, it really was. So, hopefully the extra week will mean Roger feels even better this weekend. We have a family-reunion type event in South Bend that should prove to be loads of laughter. All good for the soul.
I'm filled with mixed emotions as I write tonight. Friday, Roger has a CT Scan to see how effective the chemo has been. Judging by how good the "good days" are, we are led to believe (and Dr. B agrees) that the chemo has been doing its job. I'd be lying if I said we weren't apprehensive/concerned/anxious. The other part of the mixed emotion...is after Roger FINALLY starts having good days...its down right difficult to gear up for another round of bad days. I'm hoping the extra bi-week will give Roger more strength so that the next round of chemo may not be as horrible as Round #4. Crossing fingers....hoping hoping hoping.
Not sure what Roger's weight is. He tries to weigh himself every few days. Usually I badger him to find out. Up? or Down? and then the appropriate follow up nagging for food hydration, etc. I'm guessing he is about 147. He usually loses about 5-7 lbs during chemo and the few days following taking him back down to 140. Then as his appetite returns, he will ramp back up to 147-150. We keep hoping we can get him above 150 and gradually work his weight upward. Its a vicious cycle.
Can't remember if I mentioned previously, we've had a home nurse come in to train me how to give Roger fluids here at home so that we don't have to go into the hospital, and can in fact reduce the number of times we go into the infusion center. The beauty of doing this at home is 1) less chance of big ol' nasty hospital germs getting Roger, and 2) its much easier, more relaxing to be at home. The process is no big deal. Roger's port is accessed by one of the nurses at the infusion center. They leave the needle in. Then here at home, I hook up the saline solutions to an IV line, and then attach the IV lines (after sanitizing and alcohol rubbing everything) to the needle line and away the solutions drip. We flush his lines with saline and finish with this blood thinner stuff called heprin which keeps the port line from clogging up. And there you have it. All in the process takes us about 3 hours or so. And, its just generally better for both of us. I can buzz around the house with house work or yard work, and Roger can snooze or surf the tv channels. A pharmacy delivery service will bring us the supplies we need to give Roger fluids on an as need basis.
Thats all for now. Hugs to all. ~a
I'm filled with mixed emotions as I write tonight. Friday, Roger has a CT Scan to see how effective the chemo has been. Judging by how good the "good days" are, we are led to believe (and Dr. B agrees) that the chemo has been doing its job. I'd be lying if I said we weren't apprehensive/concerned/anxious. The other part of the mixed emotion...is after Roger FINALLY starts having good days...its down right difficult to gear up for another round of bad days. I'm hoping the extra bi-week will give Roger more strength so that the next round of chemo may not be as horrible as Round #4. Crossing fingers....hoping hoping hoping.
Not sure what Roger's weight is. He tries to weigh himself every few days. Usually I badger him to find out. Up? or Down? and then the appropriate follow up nagging for food hydration, etc. I'm guessing he is about 147. He usually loses about 5-7 lbs during chemo and the few days following taking him back down to 140. Then as his appetite returns, he will ramp back up to 147-150. We keep hoping we can get him above 150 and gradually work his weight upward. Its a vicious cycle.
Can't remember if I mentioned previously, we've had a home nurse come in to train me how to give Roger fluids here at home so that we don't have to go into the hospital, and can in fact reduce the number of times we go into the infusion center. The beauty of doing this at home is 1) less chance of big ol' nasty hospital germs getting Roger, and 2) its much easier, more relaxing to be at home. The process is no big deal. Roger's port is accessed by one of the nurses at the infusion center. They leave the needle in. Then here at home, I hook up the saline solutions to an IV line, and then attach the IV lines (after sanitizing and alcohol rubbing everything) to the needle line and away the solutions drip. We flush his lines with saline and finish with this blood thinner stuff called heprin which keeps the port line from clogging up. And there you have it. All in the process takes us about 3 hours or so. And, its just generally better for both of us. I can buzz around the house with house work or yard work, and Roger can snooze or surf the tv channels. A pharmacy delivery service will bring us the supplies we need to give Roger fluids on an as need basis.
Thats all for now. Hugs to all. ~a
Sunday, September 4, 2011
The fog has lifted
We knew it would happen...it took longer than anticipated....but the fog has finally lifted. It was a dark and dense one that periodically felt suffocating....but it has lifted.
Roger is feeling much much better. Well better MOSTLY. His intestines which literally and figuratively trail behind (get it? behind?....sorry) are now getting into the act. Regardless, he generally feels better. His personality has emerged from the fog. Goofy and silly and somewhat obnoxious.
An example: We were adding water to our salt water fish tank. I had to bring the water up from the basement. We have some sort of whiz-bang water gizmo which changes ordinary Hoosier tap water in to fancy-smancy water that fish-ies love (or at least don't die from). Anyway, I hefted a big ol' 5 gallon jug up the stairs and then we BOTH raised the jug to pour water into the tank. As we are pouring the water and I am being ever so careful to NOT spill water on the hardwood floors, I feel something tickling my fingers which are on the underside of the water jug. I must confess, I have an inexplicable, unreasonable, down right ridiculous fear of spiders...So I pondered for a moment, "is that something with 8 legs?!?!?!?!??!" . Deciding no, it was not a monster with 8 legs. I look over at Roger and see him smirking and then realize its HIS fingers tickling mine. As I realize this I ask, "what are you doing?" and get in response "flirting at the fish tank". See? Goofy. I know. For most everyone else, you'd say "what? big deal" Gotta tell you. From my perspective, it IS a big deal. I don't hear boo from Roger for several days during chemo and then when he does communicate....well, he's a smidge grumpy and foul....so when he comes out on this side with the "old Roger" goofy and all...Well, its freakin' fabulous!!!!
We are down at the boat. Its ridiculously hot. Roger is in heaven and I feel as if I'm in hell. Not figuratively but literally. See, here's the paradox. Roger's chemo makes him hyper sensitive to cold. Soooooooo......he LUVSSSSSSSSS hot hot hot. And me? Well, I'm 27 years old (read between the lines) and hyper sensitivity to heat. Since my world is about making and trying to keep Roger comfortable, I turn down/off the air conditioning to make Roger more comfortable. Meanwhile I melt into disgusting pools of ooze. Nice, huh? Anyway, I think its going to be a weekend of compromise. The first two days 95 degrees + and the end of the weekend upper 70's to low 80 degrees. See? A compromise.
Hope to have many more Roger-isms to share as the weekend wears on. Also, hoping your weekend is fab.
love, a
Roger is feeling much much better. Well better MOSTLY. His intestines which literally and figuratively trail behind (get it? behind?....sorry) are now getting into the act. Regardless, he generally feels better. His personality has emerged from the fog. Goofy and silly and somewhat obnoxious.
An example: We were adding water to our salt water fish tank. I had to bring the water up from the basement. We have some sort of whiz-bang water gizmo which changes ordinary Hoosier tap water in to fancy-smancy water that fish-ies love (or at least don't die from). Anyway, I hefted a big ol' 5 gallon jug up the stairs and then we BOTH raised the jug to pour water into the tank. As we are pouring the water and I am being ever so careful to NOT spill water on the hardwood floors, I feel something tickling my fingers which are on the underside of the water jug. I must confess, I have an inexplicable, unreasonable, down right ridiculous fear of spiders...So I pondered for a moment, "is that something with 8 legs?!?!?!?!??!" . Deciding no, it was not a monster with 8 legs. I look over at Roger and see him smirking and then realize its HIS fingers tickling mine. As I realize this I ask, "what are you doing?" and get in response "flirting at the fish tank". See? Goofy. I know. For most everyone else, you'd say "what? big deal" Gotta tell you. From my perspective, it IS a big deal. I don't hear boo from Roger for several days during chemo and then when he does communicate....well, he's a smidge grumpy and foul....so when he comes out on this side with the "old Roger" goofy and all...Well, its freakin' fabulous!!!!
We are down at the boat. Its ridiculously hot. Roger is in heaven and I feel as if I'm in hell. Not figuratively but literally. See, here's the paradox. Roger's chemo makes him hyper sensitive to cold. Soooooooo......he LUVSSSSSSSSS hot hot hot. And me? Well, I'm 27 years old (read between the lines) and hyper sensitivity to heat. Since my world is about making and trying to keep Roger comfortable, I turn down/off the air conditioning to make Roger more comfortable. Meanwhile I melt into disgusting pools of ooze. Nice, huh? Anyway, I think its going to be a weekend of compromise. The first two days 95 degrees + and the end of the weekend upper 70's to low 80 degrees. See? A compromise.
Hope to have many more Roger-isms to share as the weekend wears on. Also, hoping your weekend is fab.
love, a
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