Linda is having a hard time settling down...one can hear it in her breathing....she needs to quit worrying about this and that....I think it's just that she is really tired..and gets awaken a lot...and it was a very "people busy" way....
Tomorrow we are changing things a bit..folks that want to talk will go to the end of the hall...few people in the room at a time being in a quiet state with Linda so they can feel her healing and she has a chance to heal....
The breathing has quieted a bit..hopefully she will sleep soon...she is not operating with much of a margin ...although at 93%...keep up the healing work Linda.....
Thursday, January 13, 2011
Thursday...January 13th...7:30 pm...2011
Many many visitors today.....family members from everywhere and close friends.......to offer their love and support for Linda.....and Linda took it all in and recognizes she doesn't need to worry....all will be ok....
Linda received 2 liters of blood to help with the O2 saturation in the blood....she also has continued to receive antibiotics for the pneumonia....again, she is critically ill.
The Doctor spoke to us and explained what was going on with Linda and the outlook.....the danger is the O2 percentage dropping to a point where the body shuts down....this is caused by the advanced lung cancer and pneumonia.....inhibiting the lungs from working properly and thereby causing the drop in oxygen concentration. ...this could happen at any time....or might not happen if the pneumonia is stopped.
At this point, the oxygen concentration is at 94%..good news....
What can we say about the "masses" of visitors...good but tiring....the love was there....and Linda felt it.
Dave felt the potential loss of his incredible close loving wife today....like a very hard hit to the chest....it was a very emotional day...tonight getting to spend a little quiet one on one time with Linda helps....
If Linda rallies and turns the corner on this thing she can eventually return home and will probably enter Hospice care...if she does not and things worsen, Hospice is here at the hospital so they will take over here....
We shall see....
Linda received 2 liters of blood to help with the O2 saturation in the blood....she also has continued to receive antibiotics for the pneumonia....again, she is critically ill.
The Doctor spoke to us and explained what was going on with Linda and the outlook.....the danger is the O2 percentage dropping to a point where the body shuts down....this is caused by the advanced lung cancer and pneumonia.....inhibiting the lungs from working properly and thereby causing the drop in oxygen concentration. ...this could happen at any time....or might not happen if the pneumonia is stopped.
At this point, the oxygen concentration is at 94%..good news....
What can we say about the "masses" of visitors...good but tiring....the love was there....and Linda felt it.
Dave felt the potential loss of his incredible close loving wife today....like a very hard hit to the chest....it was a very emotional day...tonight getting to spend a little quiet one on one time with Linda helps....
If Linda rallies and turns the corner on this thing she can eventually return home and will probably enter Hospice care...if she does not and things worsen, Hospice is here at the hospital so they will take over here....
We shall see....
Thursday....January 13th....7:30am....2011
Linda is sound asleep..after ordering a big breakfast coming at 8 am...go figure.....she said it is her best meal of the day...so that is a good sign she plans on eating...
Again, it looks like the O2 issue might be resolved....at least for now.....we were told this morning she was at 60% coming into the ER last night...ouch....
The meds are still coming and coming for the pneumonia so we are not out of the woods by any means.....the palliative care doctor last week had warned us about pneumonia....
Calvary is coming.......Linda's brother Marlin and sister in law Joni are loading on a plane out of Yuma, Arizona right now, heading this way.....Son Jim and daughter in law Jenn have caught an early flight from Phoenix and on their way.....friend Mary is ready to load in Burbank, California heading here......daughter Wendy is driving down later this morning from Seattle....
About 8 am I think I will go home and brush my teeth and let the dog out...poor Sadie....she has been close to Linda all the way (stays on the bed all day)..she must have felt lost last night with Linda gone...
Linda and I talked this morning and wondered by she wasn't in ICU.....then Duh.....we remembered what the Doctor said about the advanced directive and all....no ICU would be needed.....makes sense now.....
Again, it looks like the O2 issue might be resolved....at least for now.....we were told this morning she was at 60% coming into the ER last night...ouch....
The meds are still coming and coming for the pneumonia so we are not out of the woods by any means.....the palliative care doctor last week had warned us about pneumonia....
Calvary is coming.......Linda's brother Marlin and sister in law Joni are loading on a plane out of Yuma, Arizona right now, heading this way.....Son Jim and daughter in law Jenn have caught an early flight from Phoenix and on their way.....friend Mary is ready to load in Burbank, California heading here......daughter Wendy is driving down later this morning from Seattle....
About 8 am I think I will go home and brush my teeth and let the dog out...poor Sadie....she has been close to Linda all the way (stays on the bed all day)..she must have felt lost last night with Linda gone...
Linda and I talked this morning and wondered by she wasn't in ICU.....then Duh.....we remembered what the Doctor said about the advanced directive and all....no ICU would be needed.....makes sense now.....
Thursday....January 13th...5:40 am..2011
Linda just got more blood draws....for blood counts so they can determine if transfusions are needed when the doctor comes in this am....they took the draws from the port which is so quick and painless...the guy that did the draws during the night did a painful back of the hand insertion draw saying the port was needed for fluids...how some people are locked into certain patterns....oh well....
Respiratory therapy coming next....
Linda is rattling hard...
Every time one thinks they might fall asleep, a new nurse shows.....
Son Jim and daughter in law Jenn are coming back from Arizona on an earlier flight...then direct to hospital.......Friend Mary is coming in from California on a flight this am....and direct to hospital....
Linda's O2 percentage dropped to 88%...dang...now 93...now 92..so all over the place...so who knows....the therapist might know....94......phew!
Another antibiotic at 6 am.....
Hind sight..a wonderful thing....if....we had only known....: In hindsight it seems that Linda was developing pneumonia sometime early yesterday...amazingly after the CTscan showed nothing (from what we heard..more on that as we find out later)...and Linda was able to make the trip to the OHSU with some difficulty but not too tough....the day before...and trips to the bathroom were somewhat arduous but manageable....and then...Claudine and Claudia had problems assisting Linda..and Linda was faint...a clue..in hindsight, Linda was not getting enough O2 to her system...even when it was cranked up from 2 to 4 ml... And then when her temperature rose and we tried to transport...Linda fainted while we were trying to load her in the car...again, hindsight....a lack of O2 to the system, resulting in fainting...
One just doesn't know everything but the good news is....when we knew we were in trouble, we got help.....and Linda was safely transported to the hospital....amazing what a difference a few hours will make....
In the hospital we (nurses and Dave) changed Linda's ostomy.....put a new base on and a bag and...it was a new experience for the nurses and they were appreciative of the opportunity to see and particpate..and this prevents potential trouble on that site today...
The therapist got Linda's O2 back up to 97%.....good news....
Respiratory therapy coming next....
Linda is rattling hard...
Every time one thinks they might fall asleep, a new nurse shows.....
Son Jim and daughter in law Jenn are coming back from Arizona on an earlier flight...then direct to hospital.......Friend Mary is coming in from California on a flight this am....and direct to hospital....
Linda's O2 percentage dropped to 88%...dang...now 93...now 92..so all over the place...so who knows....the therapist might know....94......phew!
Another antibiotic at 6 am.....
Hind sight..a wonderful thing....if....we had only known....: In hindsight it seems that Linda was developing pneumonia sometime early yesterday...amazingly after the CTscan showed nothing (from what we heard..more on that as we find out later)...and Linda was able to make the trip to the OHSU with some difficulty but not too tough....the day before...and trips to the bathroom were somewhat arduous but manageable....and then...Claudine and Claudia had problems assisting Linda..and Linda was faint...a clue..in hindsight, Linda was not getting enough O2 to her system...even when it was cranked up from 2 to 4 ml... And then when her temperature rose and we tried to transport...Linda fainted while we were trying to load her in the car...again, hindsight....a lack of O2 to the system, resulting in fainting...
One just doesn't know everything but the good news is....when we knew we were in trouble, we got help.....and Linda was safely transported to the hospital....amazing what a difference a few hours will make....
In the hospital we (nurses and Dave) changed Linda's ostomy.....put a new base on and a bag and...it was a new experience for the nurses and they were appreciative of the opportunity to see and particpate..and this prevents potential trouble on that site today...
The therapist got Linda's O2 back up to 97%.....good news....
Thursday....January 13th...4am...2011
Blood pressure (BP) 99 over 61....better !
O2 96 percent...good !
103 pulse.much better than the 153 earlier tonight....
Linda sounds horrible....rattling creaking breathing....but no discomfort really....but the sounds indicate there is still a very serious problem...
The last of the antibiotics are going in..more tomorrow we hear....
O2 96 percent...good !
103 pulse.much better than the 153 earlier tonight....
Linda sounds horrible....rattling creaking breathing....but no discomfort really....but the sounds indicate there is still a very serious problem...
The last of the antibiotics are going in..more tomorrow we hear....
Thursday.....January 13th...2011....2 am....
Linda's blood pressure is 86 over 56.....damn.....not good...same as it was about 2 hours ago....low blood pressure means less oxygen is getting to the organs....they have been giving her fluids in an effort to increase the BP...still have yet to hear about the transfusions...
Thursday....January 13th.....1:30 am...2011
They just did another O2 check...Linda was at 95%!!!!!...the Doctor had told the nurses to do everything they could to get it at least to 88%......I think she was at 81% when she came in...
Another "big gun" antibiotic is being administered.....so far, two "big guns" and two "medium guns"....they are throwing everything they got at this stuff....
Another "big gun" antibiotic is being administered.....so far, two "big guns" and two "medium guns"....they are throwing everything they got at this stuff....
Thursday....January 13th...2011
Linda is resting well...I take comfort in that....no pain and snoring loudly...good for her!
I've thought a lot about how our lives together will end.....my dear hope is that we are not there yet.....I reflect back through some pictures I have been sorting of Linda for a publication I am planning and realize it wasn't that long ago that she was so healthy and energetic and adventuresome....loving life...and living life...and how suddenly that life transitioned to another type of life...where we accepted each day as a "new normal" and "it was what it was"....and yet in reflection...there still was a quality to that new life....
I was lucky to be in the right place at the right time over 30 years ago to meet a wonderful woman who overcame a tragedy and exhibited positive attitudes and saw good in people...was without negative judgements.....practiced acceptance....
She has taught me a lot about life...and I am a better person because of her....
Well enough of the babbling.....I am still absorbing these comments tonight to the posting...all I can say is "incredible"..how our lives touch others and others......ours...
Peace be to you....
I've thought a lot about how our lives together will end.....my dear hope is that we are not there yet.....I reflect back through some pictures I have been sorting of Linda for a publication I am planning and realize it wasn't that long ago that she was so healthy and energetic and adventuresome....loving life...and living life...and how suddenly that life transitioned to another type of life...where we accepted each day as a "new normal" and "it was what it was"....and yet in reflection...there still was a quality to that new life....
I was lucky to be in the right place at the right time over 30 years ago to meet a wonderful woman who overcame a tragedy and exhibited positive attitudes and saw good in people...was without negative judgements.....practiced acceptance....
She has taught me a lot about life...and I am a better person because of her....
Well enough of the babbling.....I am still absorbing these comments tonight to the posting...all I can say is "incredible"..how our lives touch others and others......ours...
Peace be to you....
Thursday....January 13th 12:02 am...2011
Nurse Allison went thru the ground rules with us...no flatscreen tv.....
They are preparing another round of antibiotics..on top of the ones used earlier in an effort to head this pneumonia off.....we remembered Linda had a pneumonia shot last fall..so much for that...of course we heard there are so many types, one can't cover all....septic shock is another word we have been hearing....we went thru that a few months ago..the difference being Linda was much stronger then....
Linda is snoring...tired.....
Dave is going to slip out to get something to eat....no lunch and no dinner....great way to lose weight ...yes?.....no?
They are preparing another round of antibiotics..on top of the ones used earlier in an effort to head this pneumonia off.....we remembered Linda had a pneumonia shot last fall..so much for that...of course we heard there are so many types, one can't cover all....septic shock is another word we have been hearing....we went thru that a few months ago..the difference being Linda was much stronger then....
Linda is snoring...tired.....
Dave is going to slip out to get something to eat....no lunch and no dinner....great way to lose weight ...yes?.....no?
Wednesday, January 12, 2011
Wednesday....Janaury 12th..2011
We are having some humor here so not all glumy...Linda is receiving a bronchial dilator treatment to perhaps help the O2 absorption....she is alert...doesn't have her hearing aid in so sometimes she doesn't hear what's going on....she is a trooper.....
We've notified close family members as to what is going on..hopefully they will follow the BLOG for more details....we aren't going to call anyone else .....not because we don't want to...but we are not sure what we would ask for....
They are now drawing more blood to see of Linda should be on transfusions....they are using a vein to draw the blood because the fluids going thru the port are so important..not to be interrupted....so difficulty in drawing the blood....
Her O2 absorption has gone from 85 to 92.....good for the treatment....above....
We've notified close family members as to what is going on..hopefully they will follow the BLOG for more details....we aren't going to call anyone else .....not because we don't want to...but we are not sure what we would ask for....
They are now drawing more blood to see of Linda should be on transfusions....they are using a vein to draw the blood because the fluids going thru the port are so important..not to be interrupted....so difficulty in drawing the blood....
Her O2 absorption has gone from 85 to 92.....good for the treatment....above....
Wednesday...January 12th...2011
The doctor just finished examining Linda and talked to us....Linda has been admitted and is in her room 2020........
The summary......
Linda is critically ill.....a combination of advanced lung cancer and pneumonia.....the biggest problem is poor O2 consumption which can lead to organ failure.
The Doctor is going to aggressively treat the pneumonia in hopes of turning things around.
If this does not happen, based on Linda's wishes this week regarding the chemo, involvement with Hospice and her Advanced Directive, Linda will be made comfortable and things will run their course without further invasive treatment.
Linda is comfortable...she is able to talk and is "herself".....
This is not the way we had planned things.....but one never gets to have it their way all the time......we have some unfinished business.....and I feel like I want to do something to help but it is out of my hands....we have expressed our love for each other and pray things will turn...and having said that, we have had an awareness that there would be an end to this tunnel someday and that there would be no light at the end....please let it be another day.....
The summary......
Linda is critically ill.....a combination of advanced lung cancer and pneumonia.....the biggest problem is poor O2 consumption which can lead to organ failure.
The Doctor is going to aggressively treat the pneumonia in hopes of turning things around.
If this does not happen, based on Linda's wishes this week regarding the chemo, involvement with Hospice and her Advanced Directive, Linda will be made comfortable and things will run their course without further invasive treatment.
Linda is comfortable...she is able to talk and is "herself".....
This is not the way we had planned things.....but one never gets to have it their way all the time......we have some unfinished business.....and I feel like I want to do something to help but it is out of my hands....we have expressed our love for each other and pray things will turn...and having said that, we have had an awareness that there would be an end to this tunnel someday and that there would be no light at the end....please let it be another day.....
Wednesday...January 12th..20111
Wednesday...January 12th...2011
Linda is in very serious condition with pneumonia...she is at Willamette Falls Hospital....she developed a raspy sound in her trachea today and OHSU said to have her go to an ER if her temperature rose to 100.5.....it was ok until late today when it began to rise..when it reached 100.6 we tried to put her in the car to take her to the hospital but she passed out and we called 911.....they have identified massive pneumonia in her right lung...she is receiving antibiotics, etc etc.....they will be putting her in a room soon. It appears all recognize the advanced stage of her disease and it will be a question as to whether she can weather this invasion...pneumonia is something an advanced lung cancer patirent does not want to contact.
Janine had just arrived to visit with her Mom when all this broke out....
More later as the internet site in this location is not very good....
Linda is in very serious condition with pneumonia...she is at Willamette Falls Hospital....she developed a raspy sound in her trachea today and OHSU said to have her go to an ER if her temperature rose to 100.5.....it was ok until late today when it began to rise..when it reached 100.6 we tried to put her in the car to take her to the hospital but she passed out and we called 911.....they have identified massive pneumonia in her right lung...she is receiving antibiotics, etc etc.....they will be putting her in a room soon. It appears all recognize the advanced stage of her disease and it will be a question as to whether she can weather this invasion...pneumonia is something an advanced lung cancer patirent does not want to contact.
Janine had just arrived to visit with her Mom when all this broke out....
More later as the internet site in this location is not very good....
Tuesday, January 11, 2011
Tuesday.....January 11th...2011
We made it to the CTscan appointment and on time.....it was a bit amount of work...what was nice was how wonderful and helpful the technicians and nurses were.....the scan is to be analyzed and reviewed with us on Thursday.....we almost forgot that in addition to see how the cancer has progressed or stopped or...we get to see if the radiation had done its job on the tumor in the upper lobe of the left lung....
Back home to meet with the Hospice nurse and social worker.....good folks...good information.....thanks to Chad for leading us to the right folks....
Thursday Linda will discuss all with the Oncologist and make a decision to continue or go to plan B or to quit treatment all together.....it looks like the quality of life over treatment is a priority for Linda and unless a very much less intrusive treatment is available, Linda will quit treatment and go on hospice....
Linda's Angel Maureen (Cadillac Angel) came today and watched a movie in bed together.....
Linda's Angels Claudine (Cheerleader Angel) and Claudia (Ultimate Angel) visit tomorrow afternoon and daughter Janine brings pizza and visits with her Mom tomorrow night.....
Angel Mary (Maid of Honor Angel) flies in Thursday from California to spend 4 days with Linda and with her daughter.
Son Jim flies back from the Oregon game in Arizona and visits....
Our biggest hope is an "upswing " for Linda....my sense is today she is much better but it's all relative as she remains very weak and not eating much....
ps...are there more Angels......you bet ...they haven't shown yet to be annointed and all......it will happen.....(Bird Angel, Advocate Angel, Southern Angel, Insurance Angel, Energetic Angel, etc)
Back home to meet with the Hospice nurse and social worker.....good folks...good information.....thanks to Chad for leading us to the right folks....
Thursday Linda will discuss all with the Oncologist and make a decision to continue or go to plan B or to quit treatment all together.....it looks like the quality of life over treatment is a priority for Linda and unless a very much less intrusive treatment is available, Linda will quit treatment and go on hospice....
Linda's Angel Maureen (Cadillac Angel) came today and watched a movie in bed together.....
Linda's Angels Claudine (Cheerleader Angel) and Claudia (Ultimate Angel) visit tomorrow afternoon and daughter Janine brings pizza and visits with her Mom tomorrow night.....
Angel Mary (Maid of Honor Angel) flies in Thursday from California to spend 4 days with Linda and with her daughter.
Son Jim flies back from the Oregon game in Arizona and visits....
Our biggest hope is an "upswing " for Linda....my sense is today she is much better but it's all relative as she remains very weak and not eating much....
ps...are there more Angels......you bet ...they haven't shown yet to be annointed and all......it will happen.....(Bird Angel, Advocate Angel, Southern Angel, Insurance Angel, Energetic Angel, etc)
Monday, January 10, 2011
Monday....January 10th...2010
Tough day today.....Linda didn't have much of any of an appetite....so not many calories consumed. It is very clear she cannot move without assistance....she has become very unstable...her pills have to be monitored as she appears unclear as to what to take..and so on....
Linda did sit in the living room for the football game...and thought the Ducks had won..(I wish)...
Tomorrow the CTscan and Hospice visit....
Again all calls need to go to Dave and not Linda and visits are limited to family and close "angels".... she is not very exciting to talk to anyway....and we are sure folks understand...
We encourage folks to read the BLOG for details....so we don't have to repeat ourselves again and again...
Thanks much...this is difficult....and please don't ask for pictures....the smile isn't there....
Linda did sit in the living room for the football game...and thought the Ducks had won..(I wish)...
Tomorrow the CTscan and Hospice visit....
Again all calls need to go to Dave and not Linda and visits are limited to family and close "angels".... she is not very exciting to talk to anyway....and we are sure folks understand...
We encourage folks to read the BLOG for details....so we don't have to repeat ourselves again and again...
Thanks much...this is difficult....and please don't ask for pictures....the smile isn't there....
Monday...January 10th...2010
Linda is spending another day in bed...this is where she is most comfortable...we most likely will be watching the BCS championship game (Go Oregon DUCKS!) from bed...bad news is we only have a 47 inch HD TV there as opposed to a 55 inch in the living room..but we will cope....
Linda's energy level is extremely low...it is a struggle for her to walk or use the bathroom or shower or..or...so all is a struggle...she rests comfortably so that is where she is spending her time.
The CTscan is in the morning.....and Hospice is coming out in the afternoon....so with the Oncologist appointment on Thursday we should have a "game plan" by the weekend....again, it is "quality of life" vs "length of life" and Linda is the determiner of how that all works...and no advice or coaching is needed...Linda is the "driver" and has the information she needs..or will by the weekend...
Cousin Dr. Ron and wife Deb came by today and is of great support to Linda.....
To allow Linda the greatest amount of comfort, we are asking folks to no longer call her directly.....to call Dave instead.....so he can see of she is sleeping or not taking calls...or..or...it is not a simple matter of turning off the phone as we want her to have it for emergencies....
Also we ask....no insist...that people read the Blog to see what is going on...neither of us has the energy to go back through what the Blog can explain...calls are to be more of support... .
Linda wants her visitors limited also.....to family and close friends.....nothing personal but it's about the energy....she has also turned down visits and phone callers..again, nothing personal....it's about supporting Linda......cards or notes are welcome.....
Thanks for understanding....and no more asking Dave how he's doing..he has no clue about how he is supposed to be doing..this is his first time and he is doing the best he can...and not doing it too badly...at least he "thinks " so....
Linda's energy level is extremely low...it is a struggle for her to walk or use the bathroom or shower or..or...so all is a struggle...she rests comfortably so that is where she is spending her time.
The CTscan is in the morning.....and Hospice is coming out in the afternoon....so with the Oncologist appointment on Thursday we should have a "game plan" by the weekend....again, it is "quality of life" vs "length of life" and Linda is the determiner of how that all works...and no advice or coaching is needed...Linda is the "driver" and has the information she needs..or will by the weekend...
Cousin Dr. Ron and wife Deb came by today and is of great support to Linda.....
To allow Linda the greatest amount of comfort, we are asking folks to no longer call her directly.....to call Dave instead.....so he can see of she is sleeping or not taking calls...or..or...it is not a simple matter of turning off the phone as we want her to have it for emergencies....
Also we ask....no insist...that people read the Blog to see what is going on...neither of us has the energy to go back through what the Blog can explain...calls are to be more of support... .
Linda wants her visitors limited also.....to family and close friends.....nothing personal but it's about the energy....she has also turned down visits and phone callers..again, nothing personal....it's about supporting Linda......cards or notes are welcome.....
Thanks for understanding....and no more asking Dave how he's doing..he has no clue about how he is supposed to be doing..this is his first time and he is doing the best he can...and not doing it too badly...at least he "thinks " so....
Sunday, January 9, 2011
Saturday...January 9th...2011
Linda spent most of the day in bed.....sleeping.....and receiving many calls....the fluids yesterday seem to have had no positive impact.
Claudia came to check in on her...and while Linda was in bed...they had a good discussion....
As Claudia was leaving, suddenly Linda appeared and announced she wanted Chinese "take out"...to which we responded and had a great meal.....after Claudia left, Linda watched TV before going to bed. "How do you feel", I asked.."about the same"...."tired...fatigued"....I said "you seem so much more upbeat"...to which she said "good company"..."good food"...good TV"....yea.....note..this surely isn't a response to my incredible cooking skills?????
Cousin Dr. Ron comes tomorrow afternoon with wife Deb.....we get excited when he comes...he deals with older patients with all sorts of illnesses and is a very good advisor and counselor to Linda..she values his insights and thoughts....she is surely going to bounce some thoughts about with him....
Daughter Janine comes tomorrow to do her Mom's nails...fingers and toes.....
Monday...day off.....oh..and Oregon beats Auburn....BCS Bowl for the Championship in college football.
Tuesday..... CTscan
Wednesday...day off....
Thursday...Meeting with the Oncologist..where do we go from here?????...Mary also arrives from California to visit
Claudia came to check in on her...and while Linda was in bed...they had a good discussion....
As Claudia was leaving, suddenly Linda appeared and announced she wanted Chinese "take out"...to which we responded and had a great meal.....after Claudia left, Linda watched TV before going to bed. "How do you feel", I asked.."about the same"...."tired...fatigued"....I said "you seem so much more upbeat"...to which she said "good company"..."good food"...good TV"....yea.....note..this surely isn't a response to my incredible cooking skills?????
Cousin Dr. Ron comes tomorrow afternoon with wife Deb.....we get excited when he comes...he deals with older patients with all sorts of illnesses and is a very good advisor and counselor to Linda..she values his insights and thoughts....she is surely going to bounce some thoughts about with him....
Daughter Janine comes tomorrow to do her Mom's nails...fingers and toes.....
Monday...day off.....oh..and Oregon beats Auburn....BCS Bowl for the Championship in college football.
Tuesday..... CTscan
Wednesday...day off....
Thursday...Meeting with the Oncologist..where do we go from here?????...Mary also arrives from California to visit
Friday, January 7, 2011
Friday....January 7th...2010
Linda was pretty weak and fatigued today...both being the same actually....
The infusion center gave her two bags of fluids to see what the impact would be...she slept through the whole thing peacefully as they put her into a bedroom for the infusion....
Nurse coordinator Karen visited and Linda made it clear she was not going to continue in the same state of being...the quality of life is not there......Karen indicated, depending on the CTscan results Tuesday, that time might be taken out to recover, or reduce the dose, or skip a week between each dose...or..or. For Linda, she wants something else or nothing, so we shall see....
Linda indicated she didn't feel any different after the fluid infusion....but her strength appeared obviously a bit stronger (something as opposed to nothing is something)......she seemed to move more steadily without the hesitation or wobble....we shall see tomorrow....
Today is Grand daughter Jillian's birthday...a teenager now...Lord help us!...enjoy you birthday Buzzard!
The infusion center gave her two bags of fluids to see what the impact would be...she slept through the whole thing peacefully as they put her into a bedroom for the infusion....
Nurse coordinator Karen visited and Linda made it clear she was not going to continue in the same state of being...the quality of life is not there......Karen indicated, depending on the CTscan results Tuesday, that time might be taken out to recover, or reduce the dose, or skip a week between each dose...or..or. For Linda, she wants something else or nothing, so we shall see....
Linda indicated she didn't feel any different after the fluid infusion....but her strength appeared obviously a bit stronger (something as opposed to nothing is something)......she seemed to move more steadily without the hesitation or wobble....we shall see tomorrow....
Today is Grand daughter Jillian's birthday...a teenager now...Lord help us!...enjoy you birthday Buzzard!
Thursday, January 6, 2011
Thursday.....January 6th...2010
Linda's state of being is peaceful....accepting what is.....that she is contemplating going off chemo....that maybe she might be able to try another drug/chemo that is less taxing on her body. Linda's biggest desire is to get well enough.....feel well enough...to fly to Florida to say good bye to her friends....Linda also wants to feel other than she feels right now...tired...very fatigued....not a quality of life that works for her....
Having said that, Linda is going to talk with the Oncologist next week about alternatives.....so she is not quiting treatment yet.....
Again, no suggestions or urgings are needed......just support for whatever she decides....she knows hospice is good..she will meet with them as suggested by the Palliative Doctor to get all the information and questions answers...and as he said...there is no requirement to sign up at that time....
Maureen and Kathy came up from Salem today to visit.....Linda got up early and baked cookies for their arrival....I couldn't believe it.....!!!!!!!!!!......of course Maureen (pronounced My - Reen) (yuk yuk yuk) deserves it.....she is a special lady.....who's involvement in our lives has created some pretty funny stories we will take to the grave with us.(to protect the guilty)....thanks to both ladies for taking the time to see Linda....
Son Jim stopped by as he and Jenn fly to Arizona tomorrow for the Oregon football game on Monday....
Tomorrow Linda goes in for fluids...to bolster her system.....it worked early in her treatment...why not now...
If you are concerned about how Linda looks, it is called cushingoid...the results of steroids...harmless but gives the "chipmunk look"....
Having said that, Linda is going to talk with the Oncologist next week about alternatives.....so she is not quiting treatment yet.....
Again, no suggestions or urgings are needed......just support for whatever she decides....she knows hospice is good..she will meet with them as suggested by the Palliative Doctor to get all the information and questions answers...and as he said...there is no requirement to sign up at that time....
Maureen and Kathy came up from Salem today to visit.....Linda got up early and baked cookies for their arrival....I couldn't believe it.....!!!!!!!!!!......of course Maureen (pronounced My - Reen) (yuk yuk yuk) deserves it.....she is a special lady.....who's involvement in our lives has created some pretty funny stories we will take to the grave with us.(to protect the guilty)....thanks to both ladies for taking the time to see Linda....
Son Jim stopped by as he and Jenn fly to Arizona tomorrow for the Oregon football game on Monday....
Tomorrow Linda goes in for fluids...to bolster her system.....it worked early in her treatment...why not now...
If you are concerned about how Linda looks, it is called cushingoid...the results of steroids...harmless but gives the "chipmunk look"....
Wednesday, January 5, 2011
Wednesday....January 5th....2011
Today was the visit to the Palliative Doctor...(Palliative care (from Latin palliare, to cloak) is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms, rather than striving to halt, delay, or reverse progression of the disease itself or provide a cure. The goal is to prevent and relieve suffering and to improve quality of life for people facing serious, complex illness. Non-hospice palliative care is not dependent on prognosis and is offered in conjunction with curative and all other appropriate forms of medical treatment.)The doctor is different from any other kind we have visited...this was our third session....first, he focuses on what is going on...not only physically, but mentally, spiritually, etc..etc...the state of being....the thoughts...the feelings...the questions...the unknowns....etc...
Linda talked about the last two days and how difficult they were....that she took a pretty deep drop in her quality of life (recognizing she felt a bit stronger and better today).....she talked about recognizing where she was in the cycle of chemo and that she was starting to question whether it was worth continuing.....we discussed what the doctor in Bend (Dear Dr. Kornfeld) had said about getting to a point where the quality of life becomes more important than prolonging life through treatment.
This doctor is very quiet and contemplative...his job is not to offer hope or have a "go get them" type of attitude..his demeanor is more quiet and offering ideas and resources to support the patient in where they are at in their disease and state of being. Linda describes him as "laid back"...Dave prefers "contemplative"
Anyway he suggested contacting hospice care (Hospice is a type of care and a philosophy of care that focuses on the palliation of a terminally ill patient's symptoms. These symptoms can be physical, emotional, spiritual or social in nature. The concept of hospice includes palliative care for the incurably ill given in such institutions as hospitals or nursing homes, but also care provided to those in their own homes). The purpose would be to understand what they do..what support they offer...it would not require "signing on" but rather having the information when the "need" for them is desired.....the important concept as we understand it is that all care as currently experienced such as the chemo and tests and all are stopped and that care is provided in the home as described above).
The Doctor also suggested completing a POLST (Physician Order for Life Sustaining Treatment) which directs emergency personnel if required (EMT, ambulance, fire)...it goes beyond an Advanced Directive (An Advance Directive, also known as living will, personal directive, advance directive, or advance decision, are instructions given by individuals specifying what actions should be taken for their health in the event that they are no longer able to make decisions due to illness or incapacity, and appoints a person to make such decisions on their behalf). this will be done immediately.
The Doctor felt Linda and Dave were pretty savvy....we "somewhat" understand where we are at and where we are headed....He also questioned whether Linda was "angry"..she preferred "frustrated"...that there is no miracle..that this will be comping to a closure....she is frustrated losing the clinical trial...the "miracle" drug ..etc..e.tc...but she doesn't let this control her life....
The Doctor also said that patients don't really die from cancer....falls are a major factor...which we have been greatly worried about...the Doctor will send out some folks to evaluate our home and the dangers..and ..and..to provide a safe environment. He also discussed how infections occur etc as a result of the damaged immune system....Blood clots....etc....
He also discussed the mental well being of a patient who initially goes through incredibly disastrous chemo and radiation as Linda did initially because the patient believes there is hope for a cure as opposed to the chemo now which offers no cure....patients approached these in a different way....and their well being is dramatically impacted by the latter.
The nurse, Karen, who looks after Linda's care came in and discussed some off Linda's immediate concerns..a rash..blood deposits in the nose...a bleeding outer left ear.....the desire for extra fluids to support her well being when she is down, etc. Linda will go back Friday for fluids and then anytime she feels they are necessary.
The oxygen is causing the nose to dry and bleed..we have added a humidifier to the home which might ease this..this and the rash might be due to the recent cold and dry weather (now turned to rain and rain and rain...
Claudia and Claudine came today to visit with and care for Linda.....they were a wonderful addition...they understood Linda sometimes just doesn't want to talk or engage these days but values the company and support...again, Linda is feeling a bit stronger than in the past two days (which were very difficult)...
Last night son Jim and daughter Janine came over and cooked dinner.....alright! .....a break! ....and good company.....Claudia helped with dinner tonight..we can get used to this pretty fast!
Again, no magic anywhere..just realness in life....it is life.....a process we would not have chosen.....we are approaching it in the best way we can.....thank you for your support and understanding and not suggesting we go to the Ukraine where they might have some "miracle".....(a bit of humor here)....Linda is very concerned about how all this is perceived by readers...that there might be those who will want to question Linda's decisions....and impact her decision making....this cannot happen....Linda will want and welcome support.....for whatever she does and trust she is able to decide what is best for her....it is her "journey"....please be aware of this in your thoughts and responses...please.....
Tuesday, January 4, 2011
Tuesday...January 4th...2011
The following email came yesterday from Marilyn Sara who reads the BLOG daily...it is so heartfelt and touching to both of us that we've taken the liberty to reprint it...there is much there for all of us...Thank you Marilyn..this is special as are you...(and thank you to others who have written special things ).
Hello, Dave,
I know this is a difficult stage of your "new normal." Reading the blog this holiday season helped me to appreciate our current normal even more. It was one of my best partly because I looked at it with new eyes : "What if it were my LAST?" The normal stress of the holidays was replaced by true enjoyment.
In cleaning out old files, I came across a letter I had written to Linda. It had no date, but I recall it was in response to a bump in the road somewhere along the way. I attached it because it is still so true. Sometimes I feel a bit corny about my comments on the blog, but all of them are true and very heartfelt. We will be away from our computer during much of January, but I will try to keep up to speed when I can get to one.
Take care and know that Ms Marilyn and Mr. John think of you often.
Marilyn
Dear Linda,
There was a time when you helped John to have enough courage to speak in front of a huge crowd of people....not something he had signed up for when he said "I do." You encouraged me to "be Dave" at the races. What a challenge!
Thanks for helping the both of us grow both individually and as a couple. You continue to do so to this day. I read the Blog and report to John. (He still is a bit afraid of the computer.) Your courage, honesty, and humor are an inspiration.....and you do it by just being yourself.
Love,
John and Marilyn Sara
Hello, Dave,
I know this is a difficult stage of your "new normal." Reading the blog this holiday season helped me to appreciate our current normal even more. It was one of my best partly because I looked at it with new eyes : "What if it were my LAST?" The normal stress of the holidays was replaced by true enjoyment.
In cleaning out old files, I came across a letter I had written to Linda. It had no date, but I recall it was in response to a bump in the road somewhere along the way. I attached it because it is still so true. Sometimes I feel a bit corny about my comments on the blog, but all of them are true and very heartfelt. We will be away from our computer during much of January, but I will try to keep up to speed when I can get to one.
Take care and know that Ms Marilyn and Mr. John think of you often.
Marilyn
Dear Linda,
There was a time when you helped John to have enough courage to speak in front of a huge crowd of people....not something he had signed up for when he said "I do." You encouraged me to "be Dave" at the races. What a challenge!
Thanks for helping the both of us grow both individually and as a couple. You continue to do so to this day. I read the Blog and report to John. (He still is a bit afraid of the computer.) Your courage, honesty, and humor are an inspiration.....and you do it by just being yourself.
Love,
John and Marilyn Sara
Subscribe to:
Posts (Atom)