My recurrance is offical. I start back on chemo Monday. :(

Songflower

Thinking of you
Dear Linda,

Only you would think of us with this reoccurrance. You didn't want to make us afraid for ourselves. What a woman you are! You have fortitude, love, grace, humor, and a deep sense of caring. You are what we all should be.

You have alot of living to do yet and you will go forward. Who needs hair anyway? I agree it is heartbreaking to see your family so upset. Their strength will come back.

I am writing little stories for my grandchildren (I don't have any yet.) Someday they can read them with their parents and perhaps their own children. I keep the stories short; just about my childhood, meeting my beloved husband, and simple things like when I lost my favorite dog and she was found again.

Love,
Diane

lindaprocopio

Songflower said:

Thinking of you
Dear Linda,

Only you would think of us with this reoccurrance. You didn't want to make us afraid for ourselves. What a woman you are! You have fortitude, love, grace, humor, and a deep sense of caring. You are what we all should be.

You have alot of living to do yet and you will go forward. Who needs hair anyway? I agree it is heartbreaking to see your family so upset. Their strength will come back.

I am writing little stories for my grandchildren (I don't have any yet.) Someday they can read them with their parents and perhaps their own children. I keep the stories short; just about my childhood, meeting my beloved husband, and simple things like when I lost my favorite dog and she was found again.

Love,
Diane

Thank you all so much! I knew you'd wrap me in your love.
Seeing my entire family, one after the next, react to my news with such premature grief was the hardest part of getting the recurrance diagnosis, like a preview of my funeral. I think the grieving must start way before a death in a situation like cancer, and maybe when it finally happens you are past the worst of the angst. I don't plan to kick any time soon!

Still, tomorrow I am seeing an attorney. I'm thinking of retiring January 1, and gifting/selling my business to my 2 sons now instead of leaving it to them in my will. I'll stay on the payroll and help with the transition, but I plan to gradually ease away from working all of these hours. I love my work, truly, and it helps enormously with maintaining my sanity, but I want to have more play time now. Life is short, especially for me, and I want to be free to do whatever I want to do. My husband and I want to take out all of the 'things' we have in our wills that we planned to leave to certain people, and just start giving the things away while we are alive. It sounds morbid to do estate planning, I guess, but I had this appointment scheduled even before I had my CT-scan. I'm going to cash a big CD as soon as it matures and drop that $$ into the college fund I started for my grandkids, as I may not now have the time to build it up year after year. I am a planner by nature and will be comforted by having my plan in place. I may even prepay and plan my own funeral! Maybe not, but maybe! I have already told everyone that I want my obituary to note that my last words were "Not YET!: HA!

Here is my secret tiny hopeful dream: They are just assuming I have cancer in those lymph nodes that lit up on my PET, based on the spike in my CA125. So I take my chemo infusions and my CA125 keeps dropping and the lymph nodes shrink and I am declared in remission. But here's the kicker, I STAY in remission FOREVER because there was never really any cancer in those nodes anyway! Like my fantasy?! Just enough believability that you can hang some hope on it, right? I think so. It will get me through the darkest part of the night, I think. "Call me Cleopatra, because I'm the Queen of de-Nile! (denial)" . HA!

Songflower

lindaprocopio said:

Thank you all so much! I knew you'd wrap me in your love.
Seeing my entire family, one after the next, react to my news with such premature grief was the hardest part of getting the recurrance diagnosis, like a preview of my funeral. I think the grieving must start way before a death in a situation like cancer, and maybe when it finally happens you are past the worst of the angst. I don't plan to kick any time soon!

Still, tomorrow I am seeing an attorney. I'm thinking of retiring January 1, and gifting/selling my business to my 2 sons now instead of leaving it to them in my will. I'll stay on the payroll and help with the transition, but I plan to gradually ease away from working all of these hours. I love my work, truly, and it helps enormously with maintaining my sanity, but I want to have more play time now. Life is short, especially for me, and I want to be free to do whatever I want to do. My husband and I want to take out all of the 'things' we have in our wills that we planned to leave to certain people, and just start giving the things away while we are alive. It sounds morbid to do estate planning, I guess, but I had this appointment scheduled even before I had my CT-scan. I'm going to cash a big CD as soon as it matures and drop that $$ into the college fund I started for my grandkids, as I may not now have the time to build it up year after year. I am a planner by nature and will be comforted by having my plan in place. I may even prepay and plan my own funeral! Maybe not, but maybe! I have already told everyone that I want my obituary to note that my last words were "Not YET!: HA!

Here is my secret tiny hopeful dream: They are just assuming I have cancer in those lymph nodes that lit up on my PET, based on the spike in my CA125. So I take my chemo infusions and my CA125 keeps dropping and the lymph nodes shrink and I am declared in remission. But here's the kicker, I STAY in remission FOREVER because there was never really any cancer in those nodes anyway! Like my fantasy?! Just enough believability that you can hang some hope on it, right? I think so. It will get me through the darkest part of the night, I think. "Call me Cleopatra, because I'm the Queen of de-Nile! (denial)" . HA!

Wrapping you in love
Your family is hurt and crying. I remember when my father was diagnosed with colon cancer; we were told right away it could not be cured. I can still feel the tears.

But then a surprising thing happened. We learned to live with the illness, the ups and downs. Dad learned to rest when he needed to. But best of all we really lived. He even flew out to see me for Christmas. He smiled and never lost his interest in life until he was really ready to go. But what I want to tell you is that your loved ones learn to live with this and they find themselves in a pattern of life and love. Let them care for you when they need to. I still think of all of the fun times we had together while he was on chemo. He could still make us laugh. I remember when he helped chop our grandparents old farmhouse before they tore it down. We wanted a piece of that old house. I can see him swinging the ax while we screamed like kids. My grief occured mainly after I lost him. He is with me inside and I love him so. Always will. He gave me a great gift; he taught me how to live with cancer.

You may live a long time with this cancer. None of us really knows. Friends are here for you. In the dark nights your friends - that's us - are angels in spirit. You don't have to be brave everyday for us. You can just be Linda. I've had breast and now this. Cancer has been a part of my life for a long time.

Diane

california_artist

lindaprocopio said:

Thank you all so much! I knew you'd wrap me in your love.
Seeing my entire family, one after the next, react to my news with such premature grief was the hardest part of getting the recurrance diagnosis, like a preview of my funeral. I think the grieving must start way before a death in a situation like cancer, and maybe when it finally happens you are past the worst of the angst. I don't plan to kick any time soon!

Still, tomorrow I am seeing an attorney. I'm thinking of retiring January 1, and gifting/selling my business to my 2 sons now instead of leaving it to them in my will. I'll stay on the payroll and help with the transition, but I plan to gradually ease away from working all of these hours. I love my work, truly, and it helps enormously with maintaining my sanity, but I want to have more play time now. Life is short, especially for me, and I want to be free to do whatever I want to do. My husband and I want to take out all of the 'things' we have in our wills that we planned to leave to certain people, and just start giving the things away while we are alive. It sounds morbid to do estate planning, I guess, but I had this appointment scheduled even before I had my CT-scan. I'm going to cash a big CD as soon as it matures and drop that $$ into the college fund I started for my grandkids, as I may not now have the time to build it up year after year. I am a planner by nature and will be comforted by having my plan in place. I may even prepay and plan my own funeral! Maybe not, but maybe! I have already told everyone that I want my obituary to note that my last words were "Not YET!: HA!

Here is my secret tiny hopeful dream: They are just assuming I have cancer in those lymph nodes that lit up on my PET, based on the spike in my CA125. So I take my chemo infusions and my CA125 keeps dropping and the lymph nodes shrink and I am declared in remission. But here's the kicker, I STAY in remission FOREVER because there was never really any cancer in those nodes anyway! Like my fantasy?! Just enough believability that you can hang some hope on it, right? I think so. It will get me through the darkest part of the night, I think. "Call me Cleopatra, because I'm the Queen of de-Nile! (denial)" . HA!

Cleo--Grasping at straws.
Maybe it's an infection. My two lymph nodes never did grow any bigger. How big were those nodes???

kkstef

lindaprocopio said:

Thank you all so much! I knew you'd wrap me in your love.
Seeing my entire family, one after the next, react to my news with such premature grief was the hardest part of getting the recurrance diagnosis, like a preview of my funeral. I think the grieving must start way before a death in a situation like cancer, and maybe when it finally happens you are past the worst of the angst. I don't plan to kick any time soon!

Still, tomorrow I am seeing an attorney. I'm thinking of retiring January 1, and gifting/selling my business to my 2 sons now instead of leaving it to them in my will. I'll stay on the payroll and help with the transition, but I plan to gradually ease away from working all of these hours. I love my work, truly, and it helps enormously with maintaining my sanity, but I want to have more play time now. Life is short, especially for me, and I want to be free to do whatever I want to do. My husband and I want to take out all of the 'things' we have in our wills that we planned to leave to certain people, and just start giving the things away while we are alive. It sounds morbid to do estate planning, I guess, but I had this appointment scheduled even before I had my CT-scan. I'm going to cash a big CD as soon as it matures and drop that $$ into the college fund I started for my grandkids, as I may not now have the time to build it up year after year. I am a planner by nature and will be comforted by having my plan in place. I may even prepay and plan my own funeral! Maybe not, but maybe! I have already told everyone that I want my obituary to note that my last words were "Not YET!: HA!

Here is my secret tiny hopeful dream: They are just assuming I have cancer in those lymph nodes that lit up on my PET, based on the spike in my CA125. So I take my chemo infusions and my CA125 keeps dropping and the lymph nodes shrink and I am declared in remission. But here's the kicker, I STAY in remission FOREVER because there was never really any cancer in those nodes anyway! Like my fantasy?! Just enough believability that you can hang some hope on it, right? I think so. It will get me through the darkest part of the night, I think. "Call me Cleopatra, because I'm the Queen of de-Nile! (denial)" . HA!

Cleopatra....
I like your "secret tiny hopeful dream"! I will hang my hope on it too!

Karen

thank you

lindaprocopio said:

Thank you all so much! I knew you'd wrap me in your love.
Seeing my entire family, one after the next, react to my news with such premature grief was the hardest part of getting the recurrance diagnosis, like a preview of my funeral. I think the grieving must start way before a death in a situation like cancer, and maybe when it finally happens you are past the worst of the angst. I don't plan to kick any time soon!

Still, tomorrow I am seeing an attorney. I'm thinking of retiring January 1, and gifting/selling my business to my 2 sons now instead of leaving it to them in my will. I'll stay on the payroll and help with the transition, but I plan to gradually ease away from working all of these hours. I love my work, truly, and it helps enormously with maintaining my sanity, but I want to have more play time now. Life is short, especially for me, and I want to be free to do whatever I want to do. My husband and I want to take out all of the 'things' we have in our wills that we planned to leave to certain people, and just start giving the things away while we are alive. It sounds morbid to do estate planning, I guess, but I had this appointment scheduled even before I had my CT-scan. I'm going to cash a big CD as soon as it matures and drop that $$ into the college fund I started for my grandkids, as I may not now have the time to build it up year after year. I am a planner by nature and will be comforted by having my plan in place. I may even prepay and plan my own funeral! Maybe not, but maybe! I have already told everyone that I want my obituary to note that my last words were "Not YET!: HA!

Here is my secret tiny hopeful dream: They are just assuming I have cancer in those lymph nodes that lit up on my PET, based on the spike in my CA125. So I take my chemo infusions and my CA125 keeps dropping and the lymph nodes shrink and I am declared in remission. But here's the kicker, I STAY in remission FOREVER because there was never really any cancer in those nodes anyway! Like my fantasy?! Just enough believability that you can hang some hope on it, right? I think so. It will get me through the darkest part of the night, I think. "Call me Cleopatra, because I'm the Queen of de-Nile! (denial)" . HA!

These lymph nodes will
These lymph nodes will shrink, your CA 125 will be normal for ever... you just have to go through the treatment again. All these stories we hear about people who were told they will die from cancer but lived and went to the funeral of the doctor who gave the news?
My best friend lost her mother from ovarian cancer when we were students. When my mom was diagnosed she told me: Don't cry for her as if she was dead, while she is alive!!!!!
This is the best advise I had since my mom was diagnosed.
I also remember your answer when I asked you how you stay so positive: It's not how long you live, but how you live you said. My fear for my mom is that she is very frail and will get depressed with the news of a terminal disease. That's why I kept secret the severity of her disease. But, I don't feel sad that she might die soon, because I know (from life and from my job) that I might die much earlier than her.
Today, I admitted a 16 year old girl to ICU. She is bleeding into her lungs. She does not have cancer, but her quality of life is awful since she was diagnosed with vasculitis. I am trying to say, that you have been active, and full of energy and dignity. I admire you and although I am not happy with the news, I don't pity you. YOU ARE ALIVE, HAPPY and you know how to cease the day!
I want to be like you!!!!

lindaprocopio

california_artist said:

Cleo--Grasping at straws.
Maybe it's an infection. My two lymph nodes never did grow any bigger. How big were those nodes???

NODE SIZES: (directly from my PET report)
My report says:

FDG avid left auxillary lymphadenopathy with the largest node measuring 1.0 x 1.2 cm and having an SUV of 8.3. (LINDA'S NOTE: the one in the arm pit, I'm guessing. SUV is the degree it lights up on the PET. Must've been bright because this is the only SUV noted on the report).

FDG avid retrocrural lymph nodes with the largest measuring around 8mm. (LINDA'S NOTE: the one behind the stomach).

FDG avid para-aortic lymphadenopathy beginning at the left renal vein, extending inferiorly to just above the aortic bifurcation. The largest nodal conglomerate measures 1.9 x 2.1 cm. (the one on the pelvis between the kidney and a big vein.)

No other areas of FDG uptake are present.

Then the scan notes that I have 'numerous surgical clips' along the common iliac chains (where they clipped off my surgical staples, I guess), and "fat stranding throughout the lower abdomen and pelvis representing recent surgery or radiation change."

california_artist

lindaprocopio said:

NODE SIZES: (directly from my PET report)
My report says:

FDG avid left auxillary lymphadenopathy with the largest node measuring 1.0 x 1.2 cm and having an SUV of 8.3. (LINDA'S NOTE: the one in the arm pit, I'm guessing. SUV is the degree it lights up on the PET. Must've been bright because this is the only SUV noted on the report).

FDG avid retrocrural lymph nodes with the largest measuring around 8mm. (LINDA'S NOTE: the one behind the stomach).

FDG avid para-aortic lymphadenopathy beginning at the left renal vein, extending inferiorly to just above the aortic bifurcation. The largest nodal conglomerate measures 1.9 x 2.1 cm. (the one on the pelvis between the kidney and a big vein.)

No other areas of FDG uptake are present.

Then the scan notes that I have 'numerous surgical clips' along the common iliac chains (where they clipped off my surgical staples, I guess), and "fat stranding throughout the lower abdomen and pelvis representing recent surgery or radiation change."

My Dear Cleo
Did some quick research.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2563015/

Regarding PET scans

…On other hand, some acute infectious and inflammatory processes such as TB, Cryptococcus infection, and rheumatoid nodules might have high SUVs that often overlap with the SUVs of rapidly growing and undifferentiated tumors...

standardized uptake value (SUV).


That'd be us, undiffernetiated tumors. Okay, it's a straw grasping exercise, however--

I'm just sayin'

Love ya,

claudia

MoeKay

thank you said:

These lymph nodes will
These lymph nodes will shrink, your CA 125 will be normal for ever... you just have to go through the treatment again. All these stories we hear about people who were told they will die from cancer but lived and went to the funeral of the doctor who gave the news?
My best friend lost her mother from ovarian cancer when we were students. When my mom was diagnosed she told me: Don't cry for her as if she was dead, while she is alive!!!!!
This is the best advise I had since my mom was diagnosed.
I also remember your answer when I asked you how you stay so positive: It's not how long you live, but how you live you said. My fear for my mom is that she is very frail and will get depressed with the news of a terminal disease. That's why I kept secret the severity of her disease. But, I don't feel sad that she might die soon, because I know (from life and from my job) that I might die much earlier than her.
Today, I admitted a 16 year old girl to ICU. She is bleeding into her lungs. She does not have cancer, but her quality of life is awful since she was diagnosed with vasculitis. I am trying to say, that you have been active, and full of energy and dignity. I admire you and although I am not happy with the news, I don't pity you. YOU ARE ALIVE, HAPPY and you know how to cease the day!
I want to be like you!!!!

Funny you should say this,
Funny you should say this, Linda:

"They are just assuming I have cancer in those lymph nodes that lit up on my PET, based on the spike in my CA125. So I take my chemo infusions and my CA125 keeps dropping and the lymph nodes shrink and I am declared in remission. But here's the kicker, I STAY in remission FOREVER because there was never really any cancer in those nodes anyway!"

I have been thinking virtually the same thing, and I'm really not sure why. I must confess that I still am not totally convinced this is what they are saying it is.

Perhaps my doubt about whether you are really experiencing a recurrrence is because I've become so suspicious of tests due to my recent pulmonary saga (posted on your thread about the rise in your CA-125). Or perhaps it is because during my surgery my gyn-onc stated in my Operative Report that I had "palpably enlarged notes in the obturatur fossa on the left side." The operative report also stated that the obturator nodes were sent separately to pathology because of their firmness and suspicion that the tumor was in the lower obturator chain." In the end, the 30 lymph nodes removed were all negative for tumor.

I know I am stubborn, but I still don't think you have enough evidence to conclude with 100% certainty that you have had a recurrence.

All the best,

MoeKay

Unknown

MoeKay said:

Funny you should say this,
Funny you should say this, Linda:

"They are just assuming I have cancer in those lymph nodes that lit up on my PET, based on the spike in my CA125. So I take my chemo infusions and my CA125 keeps dropping and the lymph nodes shrink and I am declared in remission. But here's the kicker, I STAY in remission FOREVER because there was never really any cancer in those nodes anyway!"

I have been thinking virtually the same thing, and I'm really not sure why. I must confess that I still am not totally convinced this is what they are saying it is.

Perhaps my doubt about whether you are really experiencing a recurrrence is because I've become so suspicious of tests due to my recent pulmonary saga (posted on your thread about the rise in your CA-125). Or perhaps it is because during my surgery my gyn-onc stated in my Operative Report that I had "palpably enlarged notes in the obturatur fossa on the left side." The operative report also stated that the obturator nodes were sent separately to pathology because of their firmness and suspicion that the tumor was in the lower obturator chain." In the end, the 30 lymph nodes removed were all negative for tumor.

I know I am stubborn, but I still don't think you have enough evidence to conclude with 100% certainty that you have had a recurrence.

All the best,

MoeKay

This comment has been removed by the Moderator

Northwoodsgirl

Oh my....
Linda,
Tears came to my eyes as I read your note. I am praying for the best possible tolerance of the chemo and quick remission. You are such an inspiration to the many of us who are in the "sisterhood". I don't know how we get through but as strong women we just do. Our angels are with us....helping us...watching out for us always. Stay in the present moment as much as you can---don't look back----tomorrow is yet to come.
(((Hugs)))
Lori

lindaprocopio

unknown said:

This comment has been removed by the Moderator

Patricia: that was my first-ever PET.
My oncologist also is skeptical of CA125s and PET scans as diagnostic tools. I was given the option to wait a month until after Christmas and re-do the tests before starting chemo. I chose to immediately start taking the low dose of taxol weekly (low enough to not affect my quality of life, other than the bald head). This way I will get weekly CA125 monitoring and a jump on any yukky cells deciding to wander out of those lymph nodes and into any of my organs, as the taxol should at least hold me steady. If the taxol doesn't work, we can always revisit the biopsy idea of that underarm node after the holidays. My oncologist said "we'll make it up as we go along", and I think that's really how it has to work.

wje630

So Sorry
Linda:

I haven't been on the site for awhile and was sorry to read you have had a recurrence.
I am joining everyone on here who has written you and given you encouragment. When I first started reading posts on here, it was yours that were so uplifting and positive. You also have a great sense of humor, which we all know is a great help when dealing with cancer. I hope during these next few weeks you will be comforted by the fact that all of us here are wishing you the very best Christmas ever and how inspiring you are to everyone on this forum. Keep the faith and God Bless.