We visited Stanford cancer center today and had a great visit with a gynocelogical/oncologist Dr Jonathan Berek. What a kind, patient, considerate, listening man he was.
We got the pathology testing back it was completed in 4 days!!!
The findings were consistant with the final findings at UCSF. that being " a primary ovarian endometroid adenocarcinoma", the liver biopsy shows as 'metastatic endometroid adenocarcinoma" in the liver. They staged it as a grade or stage 3 cancer. This is in fact good news, because it puts to rest the former possible diagnosis of Pnet or cups, which were both stage 4 and much harder to treat. So we know what we are dealing with. The treatment appears to be working, we'll see just how well in 4-5 weeks after her next c.t.scan. So this is the way it will probably play out, although in this field nothing is for certain. Hopefully the c.t. scan will show the cancer has stopped spreading and started shrinking, The best case is ultimately a period of a reasonably long remission then it will probably come back. So we stay on Gemzar as it seems to be working, for 'as long as it continues to work and the cancer responds, or as long as Elaine's body tolerates the treatment." She will be taking chemo for the rest of her life, it's kind of like having a forest fire inside that you can't completely extinguish. You just hope to contain and suppress and keep a watchful eye to catch it quickly if it flares up and starts to spread again.
She will take this chemo , then if it ceases to do the job there are about 5 others including Cisplatin, etoposide, doxil , avastin and a couple of others that i can't remember right now that you keep in your hand to play later.They are stronger and more toxic so you only pull them out as needed as they affect the quality of one's life. and considering that she will be taking chemo probably 3 out of 4 weeks for the rest of her life you want something that you can live with physically and emotionally.
So we have hope, along with other alternative treatments we hope to knock this fire down to a smoulder and keep it there for years, if not put the sucker out!!!
No one can say what will work and for how long, it's all trial and error.
So the following is our battle plan. Which you may be able to use in your lives. Not exactly in this order.
#1 Reduce stress in life, don't let anyone in that ruins your joy.
#2 Eat an extremely healthy green diet. No sugar , no red meat.
#3 Infusions of vitamins , herbs and homeopathic .
#4 Sound wave treatment with the "Rife" machine.
#5 Herbal / and vitamin supplements
#6 Chemo therapy, surveillance
#7 Spiritual routine/ hope for the future.
#6 Laugh , laugh and laugh some more.
#7 Dance, sing, make love, enjoy beautiful places, enjoy our wonderful marriage,play with our dog
#8 Did i say reduce stress!!!!
#9 Enjoy our wonderful friends and family,
#10 Explore all alternative remedies
#11 Talk to and listen only to survivors, positive, optimistic people,inspirational happy people.
#12 Cherish life
Thats all folks, love you all for caring enough to log in , the Lellie Bellies,
P.S. We still plan to walk into the new world hand in hand , married forever,Jehovah willing !
Friday, August 29, 2008
Off to Stanford wish i was that smart !
Well it's Friday morning and Lainey and i are off to Stanford, unfortunately the hospital and not the university. Please pray for us that we are able to communicate clearly with the doctors,our goal is to get a more defined diagnosis of the pathology, make sure we are treating it with the very best options, see if we want to change oncologists and thus hopefully improve the scrutiny, treatment , care and communication. Later i will post the fopahs ( is that how you spell it ) that the current oncologist has made over the past 12 months. If it wasn't for our insistence and diligence things could have gone badly wrong or been delayed, and time is of the essence. I am literally trying to save my wives life so please please please pray for me to do a good job of communication with and listening to the doctors. We love you all, take care and cherish the ones you love ( i know that's a 70's song but i like the words), love Keith and Elaine.
Sunday, August 24, 2008
Big week ahead
Hi everyone, we have a big week ahead. First of all Lainey has a 1 week reprieve from chemo :0)
Monday and Wednesday she goes to San Francisco for her vitamin and homeopathic herb infusions,
Friday we visit Stanford where we are exploring transferring to for her oncology.
I took the parafin block slides of Elaines tumor from the surgery last year to Stanford hospital on Friday and was treated so well. They are going to retest and see if they can define better what we are dealing with. Within 15 minutes of delivering the pathology they were calling me on my cell assigning doctors and suggesting oncologists. We will continue in Walnut Creek through this series of chemo (4 more weeks) then have a c.t.scan, and in the meantime see what Stanford has to say. There are 4 sisters here, including Elaine of course and they just made me dinner so i'd better go eat or i'm toast, will update later, love Keith.
Monday and Wednesday she goes to San Francisco for her vitamin and homeopathic herb infusions,
Friday we visit Stanford where we are exploring transferring to for her oncology.
I took the parafin block slides of Elaines tumor from the surgery last year to Stanford hospital on Friday and was treated so well. They are going to retest and see if they can define better what we are dealing with. Within 15 minutes of delivering the pathology they were calling me on my cell assigning doctors and suggesting oncologists. We will continue in Walnut Creek through this series of chemo (4 more weeks) then have a c.t.scan, and in the meantime see what Stanford has to say. There are 4 sisters here, including Elaine of course and they just made me dinner so i'd better go eat or i'm toast, will update later, love Keith.
Thursday, August 21, 2008
More good news
More good news, the doctor faxed us the work from 3 days ago, Elaine's Ca125 has fallen to 24. THATS NORMAL !!!!. It indicates the chemo is suppressing the cancer for now. We'll know much more in 5 weeks when we get the next c.t.scan, but i'm very hopeful of it going into remission. Tomorrow i pick up the pathology from UCSF and take it to Stanford to let their smart guys test it and see if they can tell us anything more, at this point it's being called an unusual type of Ovarian cancer.
Elaine is looking and feeling better, i just know she's getting better, at least for a time. We are realistic enough to know that stage 4 , systemic ovarian is really serious but i think we can fight this for years and not months!!!
Marika as always you brought a ray of normalcy and joy into her life today. You make her feel like she can do things. She wants to arrange to go out in service, (probably no more than an hour ) with you really soon, lets make it happen, maybe next week on her off week if you are up for it.
Anita, Betty and Cheryl .E thanks for visiting her yesterday when she wasn't feeling so good.
The meds they give her for nausea actually cause depression, so for 2-3 days after chemo she takes those cos she doesn't want to throw up then she switches to a different med so she can be up enough for the weekend meetings and to chase me around the house ;-)
We have Debbie and Jenna Paseur here , who came all the way from Houston Texas to take care of Elaine for a couple of weeks, what an act of love!!
We'll have to introduce them to "y'all" they want to show you how to do service Texas style. I think it involves a Watchtower and a concealed weapon!!! ;-)
Well that's enough sillyness for now, but as you can tell i am getting my happy back a little.
Hope to see most all of you this weekend, love you miss you , Keith.
Elaine is looking and feeling better, i just know she's getting better, at least for a time. We are realistic enough to know that stage 4 , systemic ovarian is really serious but i think we can fight this for years and not months!!!
Marika as always you brought a ray of normalcy and joy into her life today. You make her feel like she can do things. She wants to arrange to go out in service, (probably no more than an hour ) with you really soon, lets make it happen, maybe next week on her off week if you are up for it.
Anita, Betty and Cheryl .E thanks for visiting her yesterday when she wasn't feeling so good.
The meds they give her for nausea actually cause depression, so for 2-3 days after chemo she takes those cos she doesn't want to throw up then she switches to a different med so she can be up enough for the weekend meetings and to chase me around the house ;-)
We have Debbie and Jenna Paseur here , who came all the way from Houston Texas to take care of Elaine for a couple of weeks, what an act of love!!
We'll have to introduce them to "y'all" they want to show you how to do service Texas style. I think it involves a Watchtower and a concealed weapon!!! ;-)
Well that's enough sillyness for now, but as you can tell i am getting my happy back a little.
Hope to see most all of you this weekend, love you miss you , Keith.
Tuesday, August 19, 2008
It sounds like were back to where we started
Dear friends, i haven't seen the final pathology report from UCSF, (perish the thought of the patient or her spouse seeing it ) but it was faxed to our oncologist today. His assistant told me she read it line by line , and basically it seems we are back to where we started on June 24th. They now say it is Ovarian cancer that has spread to the liver, they are saying the primary site of origin was the ovaries. this is in fact good news as ovarian cancer in the liver responds well to chemo therapy. It's far better than Cups (Carcinoma of unknown primary site) which usually originates in the lungs or pancreas, and hugely better than Pnet. So we've been scared to doodah, and now we have to deal with a serious but treatable cancer.According to the "experts" it's still uncurable, well we'll see about that! this all illustrates tne need to be super diligent with one's own health care, making sure everything is being done thoroughly and correctly.
Our next step is to get the pathology to Stanford, have them test it and see if they concur.
Lainey sailed through chemo today with flying colors, the side effects will kick in , in 24 hours, also next week she gets 1 week off before 3 more rounds, so that will be a welcome break for her.
Hopefully this chemo coupled with"alternative remedies' will put this puppy out of business for a good long time. I told Lainey today, "you'll be around to keep me on my toes the rest of my life"!
So we've gone from bad to worse and back to bad,so now bad doesn't seem so bad after all, there must be a lesson in that somewhere.
Love to all , Keith and the defiant cancer butt kicking Lainey . :0)
Our next step is to get the pathology to Stanford, have them test it and see if they concur.
Lainey sailed through chemo today with flying colors, the side effects will kick in , in 24 hours, also next week she gets 1 week off before 3 more rounds, so that will be a welcome break for her.
Hopefully this chemo coupled with"alternative remedies' will put this puppy out of business for a good long time. I told Lainey today, "you'll be around to keep me on my toes the rest of my life"!
So we've gone from bad to worse and back to bad,so now bad doesn't seem so bad after all, there must be a lesson in that somewhere.
Love to all , Keith and the defiant cancer butt kicking Lainey . :0)
Monday, August 18, 2008
More good news
We saw the doctor today and got the results of last weeks tests, so these numbers are already a week old. her Ca125 dropped from 147 to just 48, 2 weeks ago it was at 333! If i drops into the 20's that's normal. This cancer marker is not the be all end all but it signifies the chemo is working, and working better and faster than they anticipated.
Here are some other number LDH (liver function) 7/21 =3720 , 7/30=1189, 8/4=454 , 8/11=190 , a decreasing number is good, Liver enzymes from 667 down to 169 in 3 weeks.
All of this is cause for hope, we are still trying to find out exactly what kind of cancer it is, at this point it is a cancer of unknown primary (CUPS) , these are difficult to cure and it's very important to identify where it started so we are sure to give it the right treatment, but by these numbers, we may have stumbled on to the right treatment. We are still pushing for a more precise diagnosis, waiting for UCSF to release it's final findings and allow us to take the pathology to Stanford for more testing.
We are pursuing a number of alternative treatments to so we may never know what is working, or if it's a combination. Our goal is to surprise the doodah (English for crap) out of the "experts," with complete remission. Lainey goes in for Gemzar treatment #5 tomorrow, please pray for her that she does not have a negative reaction.
Will keep you informed, love to all , Keith.
Here are some other number LDH (liver function) 7/21 =3720 , 7/30=1189, 8/4=454 , 8/11=190 , a decreasing number is good, Liver enzymes from 667 down to 169 in 3 weeks.
All of this is cause for hope, we are still trying to find out exactly what kind of cancer it is, at this point it is a cancer of unknown primary (CUPS) , these are difficult to cure and it's very important to identify where it started so we are sure to give it the right treatment, but by these numbers, we may have stumbled on to the right treatment. We are still pushing for a more precise diagnosis, waiting for UCSF to release it's final findings and allow us to take the pathology to Stanford for more testing.
We are pursuing a number of alternative treatments to so we may never know what is working, or if it's a combination. Our goal is to surprise the doodah (English for crap) out of the "experts," with complete remission. Lainey goes in for Gemzar treatment #5 tomorrow, please pray for her that she does not have a negative reaction.
Will keep you informed, love to all , Keith.
Another week , another chemo
Well dear friends another week another chemo. Elaine will see the doctor today andget the result of last weeks ca 125 test. We hope the numbers continued to come down and will let you know later.Lainey is tired, and tired of chemo and doctors, but we must keep fighting this thing. Next week she'll have the week off from chemo and then back for 3 more weeks then the all important c.t. scan.
Two sisters , Debbie and Jenna fly in tomorrow to help out for 2 weeks, what love and self sacrifice.
Carmen Hernandez came and cleaned our house yesterday , thank you so much, your love is greatly appreciated.
Sam and Christy are moving back to help out little old Dublin. They will be missed in Dougherty Hills but we welcome them back with open arms. If i was the c.o. (not likely to happen anytime soon) i would be talking merger, but that's cause we miss our friends so much in Dougherty Hills, you will always be Dublin family to us !
Well i have to get ready to take my bride to the doctors, please don't forget about us, we know you all have busy lives, we miss you, love Keith and Lainey.
Two sisters , Debbie and Jenna fly in tomorrow to help out for 2 weeks, what love and self sacrifice.
Carmen Hernandez came and cleaned our house yesterday , thank you so much, your love is greatly appreciated.
Sam and Christy are moving back to help out little old Dublin. They will be missed in Dougherty Hills but we welcome them back with open arms. If i was the c.o. (not likely to happen anytime soon) i would be talking merger, but that's cause we miss our friends so much in Dougherty Hills, you will always be Dublin family to us !
Well i have to get ready to take my bride to the doctors, please don't forget about us, we know you all have busy lives, we miss you, love Keith and Lainey.
Friday, August 15, 2008
Friday night update
Friday night update, Lainey struggles from chemo on the 2nd and 3rd days. Today she was pretty wiped out, and unable to do much of anything. However, she wanted me to thank Lisa D. for patiently sitting with her this morning even though she wasn't up to much, Natalie C. for lifting her spirits and making her laugh and allowing her to be silly for a bit, Theresa N. for the great Taco pilgrimage on your day!!! and Liz for your kindness in stopping by, staying for hours , and making us dinner, breakfast and lunch ,33 enchilada's wow! .Amber and Anthony P. for dinner last night, so nice to see you smile again Amber.
Friends it's a grueling daily battle for Lainey, to wake up and know your not going to be able to do much of anything is quite distressing. She has good days and bad, sick days and sad.We pray for better days when she can step outside and enjoy a few hours of simple pleasure. Never forget all those friends who are housebound, it's like a prison sentence for them , and when you go to see them take a little lighthearted laughter with you, we all need to be silly and smile.Hope for better days ahead, once again thank you for making it possible for me to leave and go to work and provide for my little , I love you, we love you , Keith.
Friends it's a grueling daily battle for Lainey, to wake up and know your not going to be able to do much of anything is quite distressing. She has good days and bad, sick days and sad.We pray for better days when she can step outside and enjoy a few hours of simple pleasure. Never forget all those friends who are housebound, it's like a prison sentence for them , and when you go to see them take a little lighthearted laughter with you, we all need to be silly and smile.Hope for better days ahead, once again thank you for making it possible for me to leave and go to work and provide for my little , I love you, we love you , Keith.
Wednesday, August 13, 2008
Scroll to the bottom of the page for Lainey's baby
Scroll to the bottom of the page to see Lainey right after she finished her first round of chemo in February, i brought this little bundle of love home for her to take care of. Now Lainey is ill again Zoe is taking care of her , i love dogs!
Can't beat Lainey's post but here's the latest
Hi all, it's wednesday night, Lainey's chemo went well on Tuesday. She has 1 more next week then a week off, then 3 more over the following three weeks, then a very important c.t. scan in early October, at which point we'll know how well it's working. if it's shrinking the tumors in her Liver and abdomen then i believe we resume chemo indefinately. This is going to be a long battle, and i'm sure tiring for all , but we treasure your love.Quite honestly the longer the battle the better as far as i'm concerned, with the ultimate goal of victory! Hey they said i'd never be a professional ballet dancer, WRONG. They said i'd never be a J.W. Wrong! So when ever anyone says never, we say OH YEAH WATCH US!!! With Jehovah's help , the love of you dear friends and all the finest the medical people have to offer we will win this battle.
Thanks to Marika, Anita, Grayson, Cheryl and Betty for todays visits, thabks everyone for all the e-mails and cards, with your love we will fight on. Love you Keith.
Thanks to Marika, Anita, Grayson, Cheryl and Betty for todays visits, thabks everyone for all the e-mails and cards, with your love we will fight on. Love you Keith.
Monday, August 11, 2008
From Lainey with Love
Hi everybody!
This is me this time.It's not easy for me to sit at a computer for as long as i'd like these days.But i just have to tell you all how happy i am to feel so loved and supported by all your good wishes and kind unselfish deeds.One of the things i pray for daily is to be able to have the opportunity to pay back some part of the riches i have received from you all.
Youv'e heard it said that even good things can come out of a bad situation. I never appreciated that until now. If you could only look inside my heart and head and see how much has changed for me.Big things have dwindled into nothing. And small things i've overlooked for many years have taken on such significance, that i'm not sure that anything but this cancer would have shown me the true value of life and all the things that can make it so happy and worthwhile.
I have gotten to know my friends so much better and new people have entered into my life.
What also touches me deeply is the many clients we work for now and in the past who are so compassionate and understanding. I wish i wasn't such a shy person. I want to be more like Keith.He can talk with people and get to know them so much easier. we have benefited from the type of business we are in from being able to interact with so many different personalities. One of the things i long for is to be able to hang paper in a room again.I miss the challenge and the satisfaction i got from giving it my all.
So, now i have new challenges. Every day the challenge is to get out of bed and find joy in doing simple things that make me feel like i've accomplished something.Maybe loading the dishwasher, or 1 load of laundry.
It was a really smart move to get another dog, because whenever i tend to want to stay in bed, Zoe, my puppy does her little whiny thing and that makes me immediately jump out of bed and get up for her sake.She's very attached to me, and i love that.
Because of the chemo (chemicals) my brain isn't too sharp, so i'm leaving the details of todays doctors visit to keith to share with you.What i can say is it hasn't sunken in that it is good news that my 'numbers" are coming down dramatically.
Before i sign off i want to say that my having a blog was the only way i thought of that we could share info with so many friends as expediently as possible.
I'm kind of self conscious that i even have a blog about me. But hopefully through it you can come to know me better.
I've wasted a lot of years in not spending enough time with the people in my life. You've been so good to Keith and i.You bring joy to us even in our saddest moments.
I've thought about all the things iv'e been through in life and have come to realize that there's more fighter in me than i realize.
Thank you for helping me fight.. I will do the same for you,
deepest love'
Lainey.
This is me this time.It's not easy for me to sit at a computer for as long as i'd like these days.But i just have to tell you all how happy i am to feel so loved and supported by all your good wishes and kind unselfish deeds.One of the things i pray for daily is to be able to have the opportunity to pay back some part of the riches i have received from you all.
Youv'e heard it said that even good things can come out of a bad situation. I never appreciated that until now. If you could only look inside my heart and head and see how much has changed for me.Big things have dwindled into nothing. And small things i've overlooked for many years have taken on such significance, that i'm not sure that anything but this cancer would have shown me the true value of life and all the things that can make it so happy and worthwhile.
I have gotten to know my friends so much better and new people have entered into my life.
What also touches me deeply is the many clients we work for now and in the past who are so compassionate and understanding. I wish i wasn't such a shy person. I want to be more like Keith.He can talk with people and get to know them so much easier. we have benefited from the type of business we are in from being able to interact with so many different personalities. One of the things i long for is to be able to hang paper in a room again.I miss the challenge and the satisfaction i got from giving it my all.
So, now i have new challenges. Every day the challenge is to get out of bed and find joy in doing simple things that make me feel like i've accomplished something.Maybe loading the dishwasher, or 1 load of laundry.
It was a really smart move to get another dog, because whenever i tend to want to stay in bed, Zoe, my puppy does her little whiny thing and that makes me immediately jump out of bed and get up for her sake.She's very attached to me, and i love that.
Because of the chemo (chemicals) my brain isn't too sharp, so i'm leaving the details of todays doctors visit to keith to share with you.What i can say is it hasn't sunken in that it is good news that my 'numbers" are coming down dramatically.
Before i sign off i want to say that my having a blog was the only way i thought of that we could share info with so many friends as expediently as possible.
I'm kind of self conscious that i even have a blog about me. But hopefully through it you can come to know me better.
I've wasted a lot of years in not spending enough time with the people in my life. You've been so good to Keith and i.You bring joy to us even in our saddest moments.
I've thought about all the things iv'e been through in life and have come to realize that there's more fighter in me than i realize.
Thank you for helping me fight.. I will do the same for you,
deepest love'
Lainey.
Good news Gemzar is working
Monday night and good news the "Gemzar ' chemo is working !
Lainey saw the oncologist today, her 4 major cancer markers in her have dropped dramatically in 1 week , which means that for the time being the chemo is working , it’s knocking the cancer back.Her ca 125 went from 333 to 147, a huge drop, we need to see it go below 100 and into the teens, but what a difference. I can tell by the way she looks and feels that she is improving. She no longer needs pain meds which is major too. Plus the added bonus, the chemo she’s on will not cause her to loose her hair!!!
She gets another dose tomorrow, but I say bring it on , it’s working. If this continues to work she will stay on it indefinitely, but she can deal with that, it’s a much better option than the alternative!!! So a good day today.Heads up Lainey is about to post, the real deal not her personal assistant love you all ,
thanks Renee Kubryk ( client) for the encouraging words today, there are so many good people around, i am privileged to know you,
thanks Sam and Christy , for being you , ;0) more love for you later!!!
Saturday, August 9, 2008
Saturday thank you's
Good morning friends, Saturday morning, and this has been the best week since this second nightmare began on June 24th. Elaine tolerated the chemo well last week but it has been the visits of the friends that have built her up and made her so much happier. I can't tell you how much it means to Elaine and i that you pour your love out and come to our home and spend hours taliking and sharing with her.So here goes, 9forgive the old mans memory if i forgot someone).
Thank you Natalie and Liz for Tuesday, Thank you Marika for Wednesday and Friday, thank you Lynette Charlie,Cheryl and Becky for Thursday,thank you Theresa, Lisa and Betty for Friday, your time spent here was priceless,and when we win this battle it will be largely due to your support.
Thank you Art and Syl for wanting to come down again on Friday, thank you Jonathan for checking in, thank you Renee for organizing meals on a very difficult week for your family.Thank you Jack and Hannah for walking Zoe!!!
Thank you Jack Sheila, Stefanie and Theresa for bringing much needed food!!
Quick update, Lainey has her next chemo on Tuesday , hopefully she'll tolerate this one as well as last week. She went to meeting Friday night , and listened in Saturday morning, and plans to go on Sunday, i'm so proud of her!!!
Thinking of Ernie and Dianne, hang in there guys it will get better,
Thinking of Patricia Derr, you'll be fine and mend soon.
Thank you Kim, Katy, Jate, Cupcake, it's so nice to hear from old friends, wish we could see you more, thank you Ron and Debbie for the beautiful card.
As for me i'm a tired old dude, so thank you everyone we need you, i need you, how i could cope without you i just don't know!
This life/world is tough , but we have a wonderful hope for the future, we have beautiful kind people for friends, never doubt this is the way in which to walk, where would we be without the truth, a few years and then out , i don't think so!
Love you all , thanks for posting , Keith.
Thank you Natalie and Liz for Tuesday, Thank you Marika for Wednesday and Friday, thank you Lynette Charlie,Cheryl and Becky for Thursday,thank you Theresa, Lisa and Betty for Friday, your time spent here was priceless,and when we win this battle it will be largely due to your support.
Thank you Art and Syl for wanting to come down again on Friday, thank you Jonathan for checking in, thank you Renee for organizing meals on a very difficult week for your family.Thank you Jack and Hannah for walking Zoe!!!
Thank you Jack Sheila, Stefanie and Theresa for bringing much needed food!!
Quick update, Lainey has her next chemo on Tuesday , hopefully she'll tolerate this one as well as last week. She went to meeting Friday night , and listened in Saturday morning, and plans to go on Sunday, i'm so proud of her!!!
Thinking of Ernie and Dianne, hang in there guys it will get better,
Thinking of Patricia Derr, you'll be fine and mend soon.
Thank you Kim, Katy, Jate, Cupcake, it's so nice to hear from old friends, wish we could see you more, thank you Ron and Debbie for the beautiful card.
As for me i'm a tired old dude, so thank you everyone we need you, i need you, how i could cope without you i just don't know!
This life/world is tough , but we have a wonderful hope for the future, we have beautiful kind people for friends, never doubt this is the way in which to walk, where would we be without the truth, a few years and then out , i don't think so!
Love you all , thanks for posting , Keith.
Tuesday, August 5, 2008
Tuesday night, Monday's chemo went witout a hitch
Hi world of wonderful friends, just a brief note to let you know Elaines chemo went well on Monday.
She obviously feels the effects of it but no major problems or alergic reactions. She is in quite good spirits, although we obviously have our moments. UCSF called today, per our request they are preparing parafin block slides of Elaines tumour that was removed last year, so we can pick them up and take them to the pathology department at Stanford. We want Stanford to run their rule over it and see if they concur with the diagnosis and if they can give is any further clarification on the type of cancer it is so we can be sure the treatment is the most appropriate and best.
Well it's late for this old dude, so i'm off to bed, thank you Liz and Natalie for visiting Elaine today, thank you Stefanie for bringing her dinner, thank you Lisa for the beautiful letter, thank you Mr and Mrs Nue (clients) for the sweet card, thank you everyone for your thoughts, prayers, love and support. Hope to have better news in the weeks ahead, love Keith.
and a special big I LOVE YOU to mum and dad, hope to see you soon.
She obviously feels the effects of it but no major problems or alergic reactions. She is in quite good spirits, although we obviously have our moments. UCSF called today, per our request they are preparing parafin block slides of Elaines tumour that was removed last year, so we can pick them up and take them to the pathology department at Stanford. We want Stanford to run their rule over it and see if they concur with the diagnosis and if they can give is any further clarification on the type of cancer it is so we can be sure the treatment is the most appropriate and best.
Well it's late for this old dude, so i'm off to bed, thank you Liz and Natalie for visiting Elaine today, thank you Stefanie for bringing her dinner, thank you Lisa for the beautiful letter, thank you Mr and Mrs Nue (clients) for the sweet card, thank you everyone for your thoughts, prayers, love and support. Hope to have better news in the weeks ahead, love Keith.
and a special big I LOVE YOU to mum and dad, hope to see you soon.
Saturday, August 2, 2008
So here we are
So here we are saturday afternoon on what has been an unbelievable week.
Monday i was re-united with my sons whom i haven't seen in years, i won't talk too much about this but it was one of the happiest days of ly life, i love and miss my boys so much and their compassion, maturity and love brought me great pride in the way they have grown into men.
Monday Theresa took Lainey to the city to see a doctor, they were rear ended by a nissan pathfinder the driver took off from the scene. Theresa gave chase so quite a harrowing experience for all
Wednesday was brutal, after doing all the research i could we met with the oncologist, even though the testing was still continuing at UCSF they were very confident of the PNEt prognosis which was brutal, we decided we had little choice but to start immediately, we were told every day counts with this kind of aggressive cancer and not to wait.
Every day sisters came in 2 hour shifts to be with lainey so i could try and work (i haven't been able to work for weeks as caring for lainey and doing all the medical stuff is a full time job)
Thursday was a dark day for Lainey, she has been through so much in her life and especially the past 13 months, she said she was tired of fighting, and i was worried that she was finally conceding defeat. We had to call off some sisters as Elaine was just too sad, (sometimes all you can do is hold your baby, love them and cry with them and kiss them and tell them you love them)
Then Darren Steele (major cancer survivor came with Linda and they gave Elaine some hope.
Friday Elaine switched meds, we found out later that day that the meds she was on for nausea has the common side effect of depression, as if we didn't have enough to be depressed about ! Noticed a big difference in Lainey on Friday, she got up , left the house which was huge took Theresa and Zoe on a walk, Theresa behaved well zoe not so good :-)
Lisa d. came at 10 am and she and Elaine talked and talked and cried together, (what s call a good time !)
Marika came at noon , read and talked to lainey showed her pictures of Italy, lainey says When do we go!! Thanks Marika you really lifted her spirits.
Betty cam at 2pm, gave Elaine soothing, encouraging counsel, THEN..............................
The doctor called said "the drama continues" said UCSF decided it's not PNET! It's still very serious but the treatment is not quite as brutal, Lainey will be on Gemzar for the next 8 weeks then will have a ct scan to see if it's having an effect. Meanwhile i will be taking the pathology to Stanford for more tests and consulting with Doctors at stanford and UCSF. Note to anyone if you have to go through this you have to take the bull by the horns and do it all yourself. You have to ask questions demand answers, get all the reports and tests no matter what , get 2nd and third opinions. Let no doctor ever think we don't care about life, Jehovah's Witnesses value life so highly we will go to extraordinary lengths to stay alive, thus banishing the myth we don't accept health care, are you crazy , we don't want to die!!!!
Lainey was so encouraged she went to meeting Friday night, and although semi concious, was overjoyed to see the friends and hear their voices,
then she got up at 6;30 am and went to bookstudy Sat morning and commented as only Lainey can ( yes i know i'm biased)
THEN she did 1 hour in the heat doing calls with Charlie and Cheryl and Becky, by then it was enough, she's very weak , dizzy and tired but she's got her joy and determination back.
Now she's laying down , Lucita and "boss" Erin are coming to clean our house, Sam and Christy are bringing dinner and as far as i'm concerned you all walk on water!!!
Jesus said you would know true Christians in that they would have love among themselves,
we are to love God and Neighbour and show it by acts of goodness and deeds of Godly devotion, we are to love one another tenderly, and be self sacrificing, can anyone doubt these fine friends are some of the most beautiful examples of Christians alive. God is not so unrighteous as to forget these good deeds and i never will . WE LOVE YOU ALL KEITH and ELENA JULIA :-)
p.s. if you can , we love to read your posts, i know they are public but please if you can figure out how to leave us a note or two it's part of Lainey's connection with the outside world
Monday i was re-united with my sons whom i haven't seen in years, i won't talk too much about this but it was one of the happiest days of ly life, i love and miss my boys so much and their compassion, maturity and love brought me great pride in the way they have grown into men.
Monday Theresa took Lainey to the city to see a doctor, they were rear ended by a nissan pathfinder the driver took off from the scene. Theresa gave chase so quite a harrowing experience for all
Wednesday was brutal, after doing all the research i could we met with the oncologist, even though the testing was still continuing at UCSF they were very confident of the PNEt prognosis which was brutal, we decided we had little choice but to start immediately, we were told every day counts with this kind of aggressive cancer and not to wait.
Every day sisters came in 2 hour shifts to be with lainey so i could try and work (i haven't been able to work for weeks as caring for lainey and doing all the medical stuff is a full time job)
Thursday was a dark day for Lainey, she has been through so much in her life and especially the past 13 months, she said she was tired of fighting, and i was worried that she was finally conceding defeat. We had to call off some sisters as Elaine was just too sad, (sometimes all you can do is hold your baby, love them and cry with them and kiss them and tell them you love them)
Then Darren Steele (major cancer survivor came with Linda and they gave Elaine some hope.
Friday Elaine switched meds, we found out later that day that the meds she was on for nausea has the common side effect of depression, as if we didn't have enough to be depressed about ! Noticed a big difference in Lainey on Friday, she got up , left the house which was huge took Theresa and Zoe on a walk, Theresa behaved well zoe not so good :-)
Lisa d. came at 10 am and she and Elaine talked and talked and cried together, (what s call a good time !)
Marika came at noon , read and talked to lainey showed her pictures of Italy, lainey says When do we go!! Thanks Marika you really lifted her spirits.
Betty cam at 2pm, gave Elaine soothing, encouraging counsel, THEN..............................
The doctor called said "the drama continues" said UCSF decided it's not PNET! It's still very serious but the treatment is not quite as brutal, Lainey will be on Gemzar for the next 8 weeks then will have a ct scan to see if it's having an effect. Meanwhile i will be taking the pathology to Stanford for more tests and consulting with Doctors at stanford and UCSF. Note to anyone if you have to go through this you have to take the bull by the horns and do it all yourself. You have to ask questions demand answers, get all the reports and tests no matter what , get 2nd and third opinions. Let no doctor ever think we don't care about life, Jehovah's Witnesses value life so highly we will go to extraordinary lengths to stay alive, thus banishing the myth we don't accept health care, are you crazy , we don't want to die!!!!
Lainey was so encouraged she went to meeting Friday night, and although semi concious, was overjoyed to see the friends and hear their voices,
then she got up at 6;30 am and went to bookstudy Sat morning and commented as only Lainey can ( yes i know i'm biased)
THEN she did 1 hour in the heat doing calls with Charlie and Cheryl and Becky, by then it was enough, she's very weak , dizzy and tired but she's got her joy and determination back.
Now she's laying down , Lucita and "boss" Erin are coming to clean our house, Sam and Christy are bringing dinner and as far as i'm concerned you all walk on water!!!
Jesus said you would know true Christians in that they would have love among themselves,
we are to love God and Neighbour and show it by acts of goodness and deeds of Godly devotion, we are to love one another tenderly, and be self sacrificing, can anyone doubt these fine friends are some of the most beautiful examples of Christians alive. God is not so unrighteous as to forget these good deeds and i never will . WE LOVE YOU ALL KEITH and ELENA JULIA :-)
p.s. if you can , we love to read your posts, i know they are public but please if you can figure out how to leave us a note or two it's part of Lainey's connection with the outside world
quick thank you's
Quick thank you's are in order before bookstudy,
Kevin, aka, "the man" McCullough, we love you so much and feel your pain too,
Betty runnels for your invaluable support,
Danielle, day in day out, week in week out , always there.
Lillian Squires for your constant concern and willingness to help
Art, one of the most spiritual men i know, and a true friend, (and oh yes Syl, musn't forget Syl)
Christina and Jeremy
Marika ( talk about the right words at the right time )
Natalie, Liz, Virginia, Santa Theresa :-)
Darren and Linda steele, who helped Lainey through some of her darkest moments last week, love you!
Mary and Priscila, Theresa Nunez,Debbie Zimm, Tanya Zim,Cheryl Evans,Colin and Valerie,
Anita Hernandez and Lisa Dallman, Cathy Thompsen, Claire and Jonathan,Sharon Q.
i could go on and on , but your meals, visits, calls, help , sustained us through a very tough week , love you all muchly Keith and the beautiful one Lainey
Kevin, aka, "the man" McCullough, we love you so much and feel your pain too,
Betty runnels for your invaluable support,
Danielle, day in day out, week in week out , always there.
Lillian Squires for your constant concern and willingness to help
Art, one of the most spiritual men i know, and a true friend, (and oh yes Syl, musn't forget Syl)
Christina and Jeremy
Marika ( talk about the right words at the right time )
Natalie, Liz, Virginia, Santa Theresa :-)
Darren and Linda steele, who helped Lainey through some of her darkest moments last week, love you!
Mary and Priscila, Theresa Nunez,Debbie Zimm, Tanya Zim,Cheryl Evans,Colin and Valerie,
Anita Hernandez and Lisa Dallman, Cathy Thompsen, Claire and Jonathan,Sharon Q.
i could go on and on , but your meals, visits, calls, help , sustained us through a very tough week , love you all muchly Keith and the beautiful one Lainey
Friday, August 1, 2008
Good news UCSF Says it's not PNET!!!
Will give details tomorrow, further testing by pathology dept at UCSF says it's not a PNET cancer. It is "A carcinoma of unknown primary origin, with no endocrine features' What does it mean , still a big battle to fight but the weapons won't be as harsh. She'll be taking only Gemzar for the next 8 weeks then we do a ct scan to see if it's working.That beats the He(( out of the aggressive 5 chemo coctail we were about to do!!! So we'll see, i'll write more later, must sleep, Lainey in excellent spririts, huge bounceback from Thursday which she said was the lowest most desperate point of her entire life. It's going to be tough but hope has returned to the lelliott household and tears of sorrow have been replaced with tears of relief and hope, love you all , remember to "maintain your sense of urgency' the rock is on it's way , AMEN!
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