Major computer issues continue...the Verizon mini computer is history..hard drive destroyed..repair cost more than the computer value new.....so now the regular lap top is in shop getting its issues resolved....
Linda still has not heard about any clinical trial news..her coughing and weezing and weakness continues...
Linda went to her primary doctor the other day..now on anitbiotics with the thinking..because of her history..that she may have an infection...she is on an inhaler also....
We leave today for a 4 day Wings couples seminar...the motorhome will be parked across the street...yea..so Linda can rest and all as needed....
Wednesday, September 29, 2010
Saturday, September 25, 2010
Saturday......September 25......2010
Dave is picking up some wood to finish a project in the garage, so I am filling in today. I've done a little baseboard painting and still have a peach pie to bake to take to Sister Karen's tonight; otherwise, I'm just taking it easy today. This over breathing wears me out! I'm definitely ready for my nap.
Thanks so much for all the comments. They really help. I enjoy just sitting and looking at our home, and how we've made it ours. I'm so glad we went through it all. It was definitely worth it.
Love you guys!
Love and gratitude....Linda
Thanks so much for all the comments. They really help. I enjoy just sitting and looking at our home, and how we've made it ours. I'm so glad we went through it all. It was definitely worth it.
Love you guys!
Love and gratitude....Linda
Thursday, September 23, 2010
Thursday....September 23rd...2010
No big news today..raining but expected to get sunny tomorrow with 80's in two days..maybe we will sit in the sun and listen to Jimmy Buffett for a day...our Wings couples seminar is next week so we will keep an eye towards that...we are able to park the motorhome across the street from the seminar so Linda can rest any time she needs to....
Linda is tired but doing ok..we cannot figure out the tiredness as there is no chemo..the blood counts are good....the blood pressure is good...must be tied to the coughing and wheezing..we shall see.....
Claudia is coming over to visit later today..maybe we will find another Mexican restaraunt among the 50 million in this area....Linda looks forward to her visits...
We worked on small stuff this morning...putting things away that were piled on a dsek or in a corner..the workout room upstairs is the only disorganized room left...still have some baseboard to do but looking to be outside having complted one fence yesterday....Linda loves this house...it's been work but it is the way she wants it...and that is good.
Linda is tired but doing ok..we cannot figure out the tiredness as there is no chemo..the blood counts are good....the blood pressure is good...must be tied to the coughing and wheezing..we shall see.....
Claudia is coming over to visit later today..maybe we will find another Mexican restaraunt among the 50 million in this area....Linda looks forward to her visits...
We worked on small stuff this morning...putting things away that were piled on a dsek or in a corner..the workout room upstairs is the only disorganized room left...still have some baseboard to do but looking to be outside having complted one fence yesterday....Linda loves this house...it's been work but it is the way she wants it...and that is good.
Wednesday, September 22, 2010
Wednesday....September 22nd...2010
Big..big day today...
First..the computer is still in the computer hospital...in fact I am using their computer....2 more days they say...
Now about Linda....
We went to OHSU....and saw a nurse practitioner as Doctor Sandler is only in on Thursdays...Linda has been feeling weak and coughs a lot and wheezes..and...and...
Anyway....the wheezing and coughing are not due to anything in her lungs....it is some respiratory issue in her trachea...so she is now going to be on a inhaler to assist in opening the airway....
Her blood counts, oxygen levels and lung Xray were all good (the Xray showed no major change since the last scan)...the right upper lobe still remains somewhat collapsed due to the primary tumor but that was there on the last scan and doesn't affect the O2 consumption....it may be affecting the way she is breathing ...using more muscles etc to breathe so the pleuritic pain increase, etc...so Linda is practicing some deeper breathing.
Linda did not use the Ambien to assist in her sleep last night after three nights of moaning and talking in her sleep..which I believe affects her the next day..tired..run down etc. Last night ..no Ambien..she snored like a freight train...
There is a new nurse handling Dr. Sandler's patients.. Karen..she understood clearly the "what now?".."where do we go from here?"...concerns we had with the failure of the Tarceva...sooooooo....Monday ....October 4th...we go back in..to meet with Dr. Sandler...to receive at least part of the pathology report on the mutations and to develop a "plan of action"...Linda will also get a Zometa (bone builder )infusion.....and then to meet with Dr. Shepard to do the pre screening for the Ostomy "take down"...
The new nurse "coordinator" Karen is calling Friday to update Linda on everything....and "check in" with Linda...we feel muchg more secure now..felt as if we were in "limbo land"..now we have a good update and link...
We are still working on many small things in the house and also working on some paper work we have put off...
Thanks for the many BLOG comments..they mean a lot....many pictures coming when we get the computer back...
First..the computer is still in the computer hospital...in fact I am using their computer....2 more days they say...
Now about Linda....
We went to OHSU....and saw a nurse practitioner as Doctor Sandler is only in on Thursdays...Linda has been feeling weak and coughs a lot and wheezes..and...and...
Anyway....the wheezing and coughing are not due to anything in her lungs....it is some respiratory issue in her trachea...so she is now going to be on a inhaler to assist in opening the airway....
Her blood counts, oxygen levels and lung Xray were all good (the Xray showed no major change since the last scan)...the right upper lobe still remains somewhat collapsed due to the primary tumor but that was there on the last scan and doesn't affect the O2 consumption....it may be affecting the way she is breathing ...using more muscles etc to breathe so the pleuritic pain increase, etc...so Linda is practicing some deeper breathing.
Linda did not use the Ambien to assist in her sleep last night after three nights of moaning and talking in her sleep..which I believe affects her the next day..tired..run down etc. Last night ..no Ambien..she snored like a freight train...
There is a new nurse handling Dr. Sandler's patients.. Karen..she understood clearly the "what now?".."where do we go from here?"...concerns we had with the failure of the Tarceva...sooooooo....Monday ....October 4th...we go back in..to meet with Dr. Sandler...to receive at least part of the pathology report on the mutations and to develop a "plan of action"...Linda will also get a Zometa (bone builder )infusion.....and then to meet with Dr. Shepard to do the pre screening for the Ostomy "take down"...
The new nurse "coordinator" Karen is calling Friday to update Linda on everything....and "check in" with Linda...we feel muchg more secure now..felt as if we were in "limbo land"..now we have a good update and link...
We are still working on many small things in the house and also working on some paper work we have put off...
Thanks for the many BLOG comments..they mean a lot....many pictures coming when we get the computer back...
Tuesday, September 21, 2010
Tuesday...September 21st...2010
The computer is still in the computer hospital..hopefully we get it back today...of course we have to then go to Verizon to get software loaded..and..and...
Here's Linda.......
I feel like I've been going downhill a little more everyday, so I've scheduled an appointment at OHSU for tomorrow. They will do an x-ray first to make sure I haven't got the pneumonia back again. I've just felt so weak and the coughing and other side effects have increased. I wished we would hear from pathology on some results for the clinical trial. I hate having the cancer running free in my body.
I'm really enjoying the house, even though I seem to be spending so much time resting right now. I'm not a lot of help to David on the baseboards, etc.
Hopefully tomorrow will shed some light on things.
Love and gratitude......Linda
1434 N Hazelnut Ct. Canby, OR 97013
Here's Linda.......
I feel like I've been going downhill a little more everyday, so I've scheduled an appointment at OHSU for tomorrow. They will do an x-ray first to make sure I haven't got the pneumonia back again. I've just felt so weak and the coughing and other side effects have increased. I wished we would hear from pathology on some results for the clinical trial. I hate having the cancer running free in my body.
I'm really enjoying the house, even though I seem to be spending so much time resting right now. I'm not a lot of help to David on the baseboards, etc.
Hopefully tomorrow will shed some light on things.
Love and gratitude......Linda
1434 N Hazelnut Ct. Canby, OR 97013
Saturday, September 18, 2010
Saturday....September 18th...2010
Sorry about no blogs for a few days...excuses...and they are good ones....too busy...and more importantly...computer broke....fell off new desk by chair back swinging and knocking the computer off..and ..and
Linda's sample of tissue was enough..it has been sent off for the mutation identification....another week before we know if there is a match for the clinical trial....the clinical trial nurse talked to Linda and gave her much information...as soon as the computer is fixed, she will update then.
The nurse said the doctor was leaning towards the trial where one takes two pills a day rather than an infusion once a week for three weeks and then a week off.
Linda continues to cough more and wheezing is more prevalent...signs the cancer has had a time to grow...she remains upbeat and optimistic....
Brother Norman visited her yesterday..son Jeff came over and spent a couple of days....Last Sunday we had a family dinner with Janine, Jenn, Jim and Jeff....pictures to follow...
Linda's sample of tissue was enough..it has been sent off for the mutation identification....another week before we know if there is a match for the clinical trial....the clinical trial nurse talked to Linda and gave her much information...as soon as the computer is fixed, she will update then.
The nurse said the doctor was leaning towards the trial where one takes two pills a day rather than an infusion once a week for three weeks and then a week off.
Linda continues to cough more and wheezing is more prevalent...signs the cancer has had a time to grow...she remains upbeat and optimistic....
Brother Norman visited her yesterday..son Jeff came over and spent a couple of days....Last Sunday we had a family dinner with Janine, Jenn, Jim and Jeff....pictures to follow...
Wednesday, September 15, 2010
Wednesday am...September 15th...2010
The house is feeling more like a home....each day things get closer to the end. Yesterday the family had dinner in celebraton of son Jeff's 40th birthday....he was most helpful on his visit getting things done....
Linda still hasn't heard the results of the biopsy as to whether there was enough tissue...they now say another couple of days....
As if financial difficulties weren't enough, a buyer of one of our properties 15 years ago...and we carry the contract..has had the house repossessed by the county for 5 years of non property tax payment...even though he has made the loan payment each month....and he is not returning calls....so today we have to pay the property tax payment in part to stop the repossession and forclose on him....it never ends....
Linda is doing well..all in all...I worry about her as I have noticed a "slide" as a result of no treatment or ineffective treatment for a period lof time..hopefully that can be stopped soon...
Linda still hasn't heard the results of the biopsy as to whether there was enough tissue...they now say another couple of days....
As if financial difficulties weren't enough, a buyer of one of our properties 15 years ago...and we carry the contract..has had the house repossessed by the county for 5 years of non property tax payment...even though he has made the loan payment each month....and he is not returning calls....so today we have to pay the property tax payment in part to stop the repossession and forclose on him....it never ends....
Linda is doing well..all in all...I worry about her as I have noticed a "slide" as a result of no treatment or ineffective treatment for a period lof time..hopefully that can be stopped soon...
Monday, September 13, 2010
Monday....September 13th...2010
Big day today..many....many boxes opened and things put away.....son Jeff was here to help.....daughter Janine came after work to help....Linda's sister Karen came to help...and brought dinner too....big progress day.....
Linda is doing well/ok......some wheezing and coughing...it seems as if it is obvious there has been some progress in the tumor growth...no word on the biopsy results today....we will most likely have to call tomorrow....
Linda is hanging artwork tomorrow with far fewer wall spaces than before...and we are adding the Florida art......good luck.....
Linda is doing well/ok......some wheezing and coughing...it seems as if it is obvious there has been some progress in the tumor growth...no word on the biopsy results today....we will most likely have to call tomorrow....
Linda is hanging artwork tomorrow with far fewer wall spaces than before...and we are adding the Florida art......good luck.....
Saturday, September 11, 2010
Saturday....September 11th...2010
The furniture has arrived!
Today we went to Central Oregon with son Jim....picked up a 24' Budget truck....picked up son Jeff....went to Brasada Ranch...and loaded our furniture...and drove it home to Canby ...ok..ok ...we left the barbeque for another trip....but everything else is on board.
Linda wanted to come along....did well....survived the trip....we kept making her sit down as she is prone to "over do"....she has some "wheezing" from the surgery.....hopefully that will go away.....other than that, she weathered yesterday pretty good....let's hope Monday will find they did get enough tissue....
Oregon thumped Tennessee today....we heard/saw most of it while at our task.....
Tomorrow? Unload!
Today we went to Central Oregon with son Jim....picked up a 24' Budget truck....picked up son Jeff....went to Brasada Ranch...and loaded our furniture...and drove it home to Canby ...ok..ok ...we left the barbeque for another trip....but everything else is on board.
Linda wanted to come along....did well....survived the trip....we kept making her sit down as she is prone to "over do"....she has some "wheezing" from the surgery.....hopefully that will go away.....other than that, she weathered yesterday pretty good....let's hope Monday will find they did get enough tissue....
Oregon thumped Tennessee today....we heard/saw most of it while at our task.....
Tomorrow? Unload!
Friday, September 10, 2010
Friday....September 10th..2010
Linda is out of surgery for her bronchoscopy.....2 hours in recovery and then she will be released...not very alert as they medicated her quite a bit...last time she complained she was in pain while the procedure was done (at the beginning of all this cancer stuff).
The doctor is not sure he got enough tissue needed to determine the mutations that need to be identified to qualify for the clinical trials. He indicated that there was so much bleeding he had to decide not to proceed further as it puts the patient at risk. Cancer tumors thrive on blood supply and when "messed with" they bleed a lot...this one in particular.
If they didn't get enough they will have to look at another avenue for examination...maybe do another bronchoscopy elsewhere...we shall see. It is a quandary...back off of a high risk situation to obtain something that may be life saving....
The rest of the day..of course, Mrs. Wood will want a Sherrie's chocolate malt upon release...she will be spitting up quite a bit of blood over the next few hours..we have to watch for the amount and call if significant.
Tomorrow is "furniture day"...going to central Oregon and renting a Budget truck and loading up the furniture which has been at our "spec" house at Brasada Ranch.....sons Jim and Jeff are set to help...and then we have two days to leisurely unload and MOVE into the new house fully.
More later...
The doctor is not sure he got enough tissue needed to determine the mutations that need to be identified to qualify for the clinical trials. He indicated that there was so much bleeding he had to decide not to proceed further as it puts the patient at risk. Cancer tumors thrive on blood supply and when "messed with" they bleed a lot...this one in particular.
If they didn't get enough they will have to look at another avenue for examination...maybe do another bronchoscopy elsewhere...we shall see. It is a quandary...back off of a high risk situation to obtain something that may be life saving....
The rest of the day..of course, Mrs. Wood will want a Sherrie's chocolate malt upon release...she will be spitting up quite a bit of blood over the next few hours..we have to watch for the amount and call if significant.
Tomorrow is "furniture day"...going to central Oregon and renting a Budget truck and loading up the furniture which has been at our "spec" house at Brasada Ranch.....sons Jim and Jeff are set to help...and then we have two days to leisurely unload and MOVE into the new house fully.
More later...
Thursday, September 9, 2010
Thursday......September 9......2010
Dave is in working on the house, and I'm trying to conserve my energy for tomorrow's 8:00am surgery,so I promised to check in with you guys.
Thanks for all the supportive comments for the biopsy. I suppose I'll have to be patient as the results will probably take the better part of a week (one company wants to do their own testing and the other company will let OHSU do it. ) I just want it done so we can move on to the next stage.
Son Jeff's 40th birthday is tomorrow. Happy Birthday, Jeff! I'll get to see him on Saturday if I'm feeling well enough to take the trip to Central Oregon to get the furniture. Jeff is coming back with us to stay about four days as we don't get to see a lot of him.
Well, here's to tomorrow and we'll chack in to let you know how it went.
Love and gratitude.......Linda
Thanks for all the supportive comments for the biopsy. I suppose I'll have to be patient as the results will probably take the better part of a week (one company wants to do their own testing and the other company will let OHSU do it. ) I just want it done so we can move on to the next stage.
Son Jeff's 40th birthday is tomorrow. Happy Birthday, Jeff! I'll get to see him on Saturday if I'm feeling well enough to take the trip to Central Oregon to get the furniture. Jeff is coming back with us to stay about four days as we don't get to see a lot of him.
Well, here's to tomorrow and we'll chack in to let you know how it went.
Love and gratitude.......Linda
Wednesday, September 8, 2010
Wednesday...September 8th..2010
Linda will be excited when she sees the BLOG comments...good job!
Linda baked her first cake in her new gas oven today...a cake for the neighbors across the street..his birthday yesterday...hers today and their anniversary tomorrow....Linda's famous bunt cake headed that way today. Linda also did her first wash in the dishwasher..progress is being made.
After many false starts today the baseboard is being put down...one more day to get a lot of it done as Linda's test is on Friday and we go get the furniture on Saturday...
Linda had a bit of the old stuff today...low blood pressure and higher pulse......but she appears to have weathered it well...we shall see.
Linda baked her first cake in her new gas oven today...a cake for the neighbors across the street..his birthday yesterday...hers today and their anniversary tomorrow....Linda's famous bunt cake headed that way today. Linda also did her first wash in the dishwasher..progress is being made.
After many false starts today the baseboard is being put down...one more day to get a lot of it done as Linda's test is on Friday and we go get the furniture on Saturday...
Linda had a bit of the old stuff today...low blood pressure and higher pulse......but she appears to have weathered it well...we shall see.
Tuesday Late or Early Wednesday....Sepetember 8th...2010
Yikes..it is already Wednesday or very late Tuesday....lots has happened...
Of course we made it back from our camping trip..."roughing it" in the RV while the family used tents...hey....we did that in our younger days too....
We are back "at it".....stove is in...gas is on...we've got the hot water heater going.....the furnace going......with filters now.....duh....the lady living there didn't have a filter for who knows how long......Linda has painted lots of base board so that is getting ready to be "pin nailed" in today...and tomorrow .....and....
Saturday we get the furniture from Central Oregon and Sunday we move it in...we will be moved in by Monday....
Linda's biopsy is Friday morning at OHSU.....she was insistent that it not be "twilight"anesthesia this time..she wants to be totally "out" as the first time she had a biopsy in a "twilight state" she felt the whole thing....her teary crocodile tears response was "they liiiiiieeeeeeedddddd (lied)..it HHHHHUUUUURRRRRTTTTTT!!!!!! (HURT)"..she claims to have felt the whole thing. Anyway. she wants "out....o-u-t" this time....
Linda's spirit is much better...her talk has turned more positive....believing she will have what it takes to be successful in a clinical trial...comments on the blog have been most helpful...good for you.....
Today Linda will be heading to her old stomping grounds...St. Paul, Oregon...with Claudia...she looks forward to her "jaunts" out with Claudia....."Girls Go Wild......In St. Paul ,Oregon"......
Of course we made it back from our camping trip..."roughing it" in the RV while the family used tents...hey....we did that in our younger days too....
We are back "at it".....stove is in...gas is on...we've got the hot water heater going.....the furnace going......with filters now.....duh....the lady living there didn't have a filter for who knows how long......Linda has painted lots of base board so that is getting ready to be "pin nailed" in today...and tomorrow .....and....
Saturday we get the furniture from Central Oregon and Sunday we move it in...we will be moved in by Monday....
Linda's biopsy is Friday morning at OHSU.....she was insistent that it not be "twilight"anesthesia this time..she wants to be totally "out" as the first time she had a biopsy in a "twilight state" she felt the whole thing....her teary crocodile tears response was "they liiiiiieeeeeeedddddd (lied)..it HHHHHUUUUURRRRRTTTTTT!!!!!! (HURT)"..she claims to have felt the whole thing. Anyway. she wants "out....o-u-t" this time....
Linda's spirit is much better...her talk has turned more positive....believing she will have what it takes to be successful in a clinical trial...comments on the blog have been most helpful...good for you.....
Today Linda will be heading to her old stomping grounds...St. Paul, Oregon...with Claudia...she looks forward to her "jaunts" out with Claudia....."Girls Go Wild......In St. Paul ,Oregon"......
Sunday, September 5, 2010
Sunday...September 5th 2010
Day 3...last camping trip of the season....1000 Trails Chehalis Washington....
Linda's sister, Karen, came by to visit as she is in Washington to see her son Rich and wife and kids. Linda had a "low key" day.....but made cookies with grand daughter Taigen......she did get some nap time so doing "OK".....she is anxious to read her BLOG to cheer her up....so as soon as this edition is wrapped up, she will go over the comments from the last couple of days.....comments DO make a difference...
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Linda's sister, Karen, came by to visit as she is in Washington to see her son Rich and wife and kids. Linda had a "low key" day.....but made cookies with grand daughter Taigen......she did get some nap time so doing "OK".....she is anxious to read her BLOG to cheer her up....so as soon as this edition is wrapped up, she will go over the comments from the last couple of days.....comments DO make a difference...
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Saturday, September 4, 2010
Saturday...September 4th...2010
Day 2 at the 1000 Trails RV park in Chehalis, Washington...about an hour and a half north of Portland....everyone is having a good time...there are a lot of people here being that it is the last long weekend of the summer....
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Linda is bouncing back a bit...her slight depressive state is being thrown back into the unknown....feeling somewhat like she did when she first found out she had cancer.....wanting to get on with the treatment but having to wait for the system to unfold and move ahead. She is feeling low because the cancer has had free reign for two months or more and time is movi ng on without something to slow things down.....
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Linda is bouncing back a bit...her slight depressive state is being thrown back into the unknown....feeling somewhat like she did when she first found out she had cancer.....wanting to get on with the treatment but having to wait for the system to unfold and move ahead. She is feeling low because the cancer has had free reign for two months or more and time is movi ng on without something to slow things down.....
We are entering a risky territory with many unknowns and hoops that have to be "jumped through" to raise the possibilities of success....and to keep "believing"......
Pictures are of daughter Janine with Linda...son in law Chris...daughter Wendy's arm (that's the extent of an early am commitment)...and grand daughter Taigen....going into the first grade and a computer wiz already...
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Friday, September 3, 2010
Friday.....September 3rd...2010
I don't know if I can do this or not. My attitude is not where I'd like it to be, but I am working on it. It's discouraging to know the last two months have been a waste with my cancer having free reign while I was thinking the great pill was going to do great things to maintain my cancer.
I choose to believe that the biopsy will show me to be a good candidate for the clinical trial and that it will attack the nasty cells and prolong my life, maybe even eliminate the cancer. Miracles have been known to happen and I'm ready for one!
This has been hard to accept, but with your love and support I will make it through this new bump in the road. Keep the prayers coming.
Love and gratitude...........Linda
I choose to believe that the biopsy will show me to be a good candidate for the clinical trial and that it will attack the nasty cells and prolong my life, maybe even eliminate the cancer. Miracles have been known to happen and I'm ready for one!
This has been hard to accept, but with your love and support I will make it through this new bump in the road. Keep the prayers coming.
Love and gratitude...........Linda
Thursday, September 2, 2010
Thursday....September 2nd...2010
Today Linda got the news she didn't want...the Tarceva has done nothing to help her...the nodules in the lung have increased in size....a nodule is on one of her adrenal glands.....progression of bone metastases....some affected lymph nodes in the abdomen....the verbage to describe it is much more extensive but this describes things in as simple terms as possible...
What now??????
We are weathering the shock, disappointment and depression....and moving on...so NO pity from the "peanut gallery".....we are moving on to "next steps".....this attitude has carried us this far and has made Linda an amazing model for others...read yesterday's New England Journal article again if more understanding is necessary.
The Oncologist said Linda may qualify for a Clinical Trial.....something not available in Bend...so a good move we made to Portland....he had his person who handles Clinical Trials meet with us and describe the two trials Linda might qualify for....the details of each are extensive so we won't review them here but to say.....Clinical Trials are "trials"...involving the targeting of therapy to a specific mutation..is what is causing the cancer in the DNA....at this point the doctors and scientists are not ready to say "this is it"..more study and trials are needed....but it creates a real chance if Linda...has the mutation...is accepted to the trial...and responds to the therapy....big "ifs" we know....
Now Linda will need to do another biopsy as the original biopsy determined she had cancer and what type but not enough specimen to determine mutations etc...if there had been enough, the doctors would have known ahead of time if the Tarceva was going to be effective. The biopsy may be done next week and once the DNA mutations are determined, the right "trial" will be selected and application made.
The alternative...there are more chemos that can be used....to slow the growth of the cancer...and affecting the rest of the body with side effects...the nasty sort of thing Linda went through earlier in her treatments.
Linda is determined...we both are..and we are committed to lead a quality life....and to do whatever it takes to slow this cancer down or better yet...beat it...still a long shot but possible....so send good energy.....no pity stuff.....
We are sitting in the woods in Chehalis Washington waiting for the kids to show up tomorrow night....camping for the weekend...then back to Oregon to finish up stuff on the house and getting our furniture next weekend....we want Linda to be able to "kick back" and enjoy her new home...if anyone is in the Bend area next Saturday afternoon and wants to help load furniture..call....or in the Canby are on Sunday afternoon to unload the furniture...Son Jim is on board so we are on our way...
This is what we know to this point..a lot of info without going into great technical detail..more later...
What now??????
We are weathering the shock, disappointment and depression....and moving on...so NO pity from the "peanut gallery".....we are moving on to "next steps".....this attitude has carried us this far and has made Linda an amazing model for others...read yesterday's New England Journal article again if more understanding is necessary.
The Oncologist said Linda may qualify for a Clinical Trial.....something not available in Bend...so a good move we made to Portland....he had his person who handles Clinical Trials meet with us and describe the two trials Linda might qualify for....the details of each are extensive so we won't review them here but to say.....Clinical Trials are "trials"...involving the targeting of therapy to a specific mutation..is what is causing the cancer in the DNA....at this point the doctors and scientists are not ready to say "this is it"..more study and trials are needed....but it creates a real chance if Linda...has the mutation...is accepted to the trial...and responds to the therapy....big "ifs" we know....
Now Linda will need to do another biopsy as the original biopsy determined she had cancer and what type but not enough specimen to determine mutations etc...if there had been enough, the doctors would have known ahead of time if the Tarceva was going to be effective. The biopsy may be done next week and once the DNA mutations are determined, the right "trial" will be selected and application made.
The alternative...there are more chemos that can be used....to slow the growth of the cancer...and affecting the rest of the body with side effects...the nasty sort of thing Linda went through earlier in her treatments.
Linda is determined...we both are..and we are committed to lead a quality life....and to do whatever it takes to slow this cancer down or better yet...beat it...still a long shot but possible....so send good energy.....no pity stuff.....
We are sitting in the woods in Chehalis Washington waiting for the kids to show up tomorrow night....camping for the weekend...then back to Oregon to finish up stuff on the house and getting our furniture next weekend....we want Linda to be able to "kick back" and enjoy her new home...if anyone is in the Bend area next Saturday afternoon and wants to help load furniture..call....or in the Canby are on Sunday afternoon to unload the furniture...Son Jim is on board so we are on our way...
This is what we know to this point..a lot of info without going into great technical detail..more later...
Wednesday, September 1, 2010
Wednesday.....September 1st...2010
Big day today..big day tomorrow...
Today Linda had her CT scan done at OHSU.....results will be known tomorrow when we meet with the Oncologist...is there more tumor growth....or was the 10% increase noted in the last scan due to the Alimta "wearing out" or is the new drug...Tarceva...ineffective...tomorrow we find out....Linda admits to being a bit nervous about the whole thing.....
Today we also met with a Palliative Doctor at OHSU......such a doctor deals with quality of life issues...it used to be a part of terminal patients or under hospice but now the doctors are being involved at earlier stages....in fact, an article in the New England Journal of Medicine...just this August showed metastic non small cell lung cancer patients (ie Linda) are doing so much better and have a longer life when under early palliative care. It is amazing this article came out after Linda was directed to this doctor by her Oncologist....the article can be seen at http://www.nejm.org/doi/pdf/10.1056/NEJMoa1000678 or Google "non small cell lung cancer palliative care".
Anyway, Linda was referred because of her eating difficulties as well as the blood pressure/pulse issues which were having negative effects on her quality of life....and then the blood pressure/pulse issues ceased (after a couple of years of struggles)...with the theory being the impact of the chemos over time.....but the Alimta being the last chemo as Tarceva is not a chemo....and the med she was given increased her appetite and both led to a greater disposition and mood.
Anyway, the Palliative Doctor today was simply amazed at how well Linda was doing...her mood...her care giver...her reltionships...etc..etc....he used the word "grace" to describe how she was traveling through this illness....in fact there was not much he could add to the meeting as Linda has a pretty good handle on things....he said what happens is the illness/disease causes the patient to lose eating, sleeping , exercise, etc., and that's where he comes in.
He did give her a prescription for stomach acid/heartburn which she has had problems with since she can no long take Prevacid as it counteracts the Tarceva. We will see him again in 5 weeks...
Again tomorrow we see the results of the scan......
We will be taking the motorhome into Portland to the Oncologist at OHSU as we then will be traveling up into Washington to a campground we belong to as part of Liesure Time/Thousand Trails.....Daughters Wendy and Janine will be there Friday to Monday as well as son in law Chris and grand daughter Taigen.....
Monday we return to finish up the many little things on the house and plan on getting our furniture and moving it in the following weekend ans\d formally move into the house from the motorhome.....today we finished the kitchen sink, faucets, garbage disposal and dishwasher installation.....
ps..just got a message on the cell phone that Linda's surgery for the Ostomy "take down" will be October 14th..originally it was scheduled for the first of October but we had it changed so Linda and Dave could attend/assist the couples workshop in Wings (Listening Heart)..which they have participated in for the last two years..yea!
Today Linda had her CT scan done at OHSU.....results will be known tomorrow when we meet with the Oncologist...is there more tumor growth....or was the 10% increase noted in the last scan due to the Alimta "wearing out" or is the new drug...Tarceva...ineffective...tomorrow we find out....Linda admits to being a bit nervous about the whole thing.....
Today we also met with a Palliative Doctor at OHSU......such a doctor deals with quality of life issues...it used to be a part of terminal patients or under hospice but now the doctors are being involved at earlier stages....in fact, an article in the New England Journal of Medicine...just this August showed metastic non small cell lung cancer patients (ie Linda) are doing so much better and have a longer life when under early palliative care. It is amazing this article came out after Linda was directed to this doctor by her Oncologist....the article can be seen at http://www.nejm.org/doi/pdf/10.1056/NEJMoa1000678 or Google "non small cell lung cancer palliative care".
Anyway, Linda was referred because of her eating difficulties as well as the blood pressure/pulse issues which were having negative effects on her quality of life....and then the blood pressure/pulse issues ceased (after a couple of years of struggles)...with the theory being the impact of the chemos over time.....but the Alimta being the last chemo as Tarceva is not a chemo....and the med she was given increased her appetite and both led to a greater disposition and mood.
Anyway, the Palliative Doctor today was simply amazed at how well Linda was doing...her mood...her care giver...her reltionships...etc..etc....he used the word "grace" to describe how she was traveling through this illness....in fact there was not much he could add to the meeting as Linda has a pretty good handle on things....he said what happens is the illness/disease causes the patient to lose eating, sleeping , exercise, etc., and that's where he comes in.
He did give her a prescription for stomach acid/heartburn which she has had problems with since she can no long take Prevacid as it counteracts the Tarceva. We will see him again in 5 weeks...
Again tomorrow we see the results of the scan......
We will be taking the motorhome into Portland to the Oncologist at OHSU as we then will be traveling up into Washington to a campground we belong to as part of Liesure Time/Thousand Trails.....Daughters Wendy and Janine will be there Friday to Monday as well as son in law Chris and grand daughter Taigen.....
Monday we return to finish up the many little things on the house and plan on getting our furniture and moving it in the following weekend ans\d formally move into the house from the motorhome.....today we finished the kitchen sink, faucets, garbage disposal and dishwasher installation.....
ps..just got a message on the cell phone that Linda's surgery for the Ostomy "take down" will be October 14th..originally it was scheduled for the first of October but we had it changed so Linda and Dave could attend/assist the couples workshop in Wings (Listening Heart)..which they have participated in for the last two years..yea!
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