MISSING----DEBRAJO, CULKA, TIGERS DO BOUNCE, NORMA2, BONNIEP, SARA ZIPORA, NANCIEB, TEAMKELLY, LIZ G
Hi guys, missing quite a few sisters. Any info. there are many more sisters that have stopped checking in, i don't remember all of them. I am only thinking of them and hoping they are all doing well. Please let me know if any one have info.
Comments
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I'm here
Sorry to worry anyone. I'm still here, but having some bad health(not the cancer)problems that are just as deadly. I will try to explain around March 11th. Saw one set of dr.'s today in Houston...not very good news. Will wait til I talk to the surgent on the 11th. Thanks for caring, love you all, Debrajo
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Hi! I'm here, too!
I trollHi! I'm here, too!
I troll our site everyday to see how everyone is doing, but it is hard to hear stories of how long & difficult some of your journeys have been. I still feel blessed to have gotten off with Stage 1a, grade 1 cancer with no further treatment needed. However, it seems to make it more heart wrenching when you read what others are still experiencing...or the ones who fought such a hard battle and lost!
I am dealing with a heart condition that has caused me far more trouble than the cancer did, but at least the treatments are not as difficult...at this point!
I think it was wonderful of Nempark to bring missing members to everyone's attention. I often wonder what has happened to the adies who posted frequently when I was diagnosed like Dr. Beila, Sara Zippora and others. You hope they have just moved on or like DebraJo have other things going on....(DebraJo, I am praying for you as you were one of favorites when diagnosed especially with all you were dealing with family-wise!)
Anyhow, I am here & hope Nempark's post will result in posts from other missing members!
Kathy
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I am here
thanks for asking. Just going through a lot of crap financially, once again finding myself jobless and it is not fun job hunting at 62. I have to make some drastic changes in my life pretty quick while I still have some savings. I may have to sell my home and go somewhere cheaper than California and I can start a new career as a store greeter :-). still NED as far as I know but plenty of other non-life threatening but life interfering conditions that prevent me from de-stressing by hiking with friends from meetup. i seem to have developed exercise induced asthma and the inhaler doesn't help at all.
DebraJo and kathy. I am sorry to hear you are having health issues. I hope everything turns out ok.
i check in occasionally but don't post unless I have something that I really feel is important.
nancy
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Hey, Nancynancibee said:I am here
thanks for asking. Just going through a lot of crap financially, once again finding myself jobless and it is not fun job hunting at 62. I have to make some drastic changes in my life pretty quick while I still have some savings. I may have to sell my home and go somewhere cheaper than California and I can start a new career as a store greeter :-). still NED as far as I know but plenty of other non-life threatening but life interfering conditions that prevent me from de-stressing by hiking with friends from meetup. i seem to have developed exercise induced asthma and the inhaler doesn't help at all.
DebraJo and kathy. I am sorry to hear you are having health issues. I hope everything turns out ok.
i check in occasionally but don't post unless I have something that I really feel is important.
nancy
What do you mean you don't post unless it's something really important? I rate what you are going through as extremely important. Hopefully our members are more than just cancer buddies in our concern for each other. What you are going through financially is just awful and not being able to relieve some of the stress through your hiking makes it so much worse. Please know I'm thinking about you and hoping things take a turn for the better.
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Posting
Thanks Connie. The financial stuff is very stressful but I know I will get through it in the future. I am a survivor in more ways than cancer.
I guess I don't post because the other ladies seem to have more experience and knowledge than I do and answer the questions better than I ever could. Also, I think it part of wanting to get on with my life. When I was going through chemo and was hairless, family and friends would call me to talk about my cancer. I told my family that I'd love to chat about our kids and other things but my cancer was off limits as a conversation topic. I would be on a hike with a meetup group and complete strangers would want me to tell them all of the details about my cancer. I told someone that I should answer that I wouldn't ask the person about his or her hemorrhoids and they should leave me to enjoy a day in the outdoors wihere I could forget my disease.
This is just the way I am. It's not the right way or the wrong way. Everyone is different.
I'll try to check in more frequently. I just want to be careful not to be negative while I am getting through this latest unemployment crisis. I did learn about a program called keepyourhome.org where California will make up to 18 months of mortgage payments on behalf of unemployment recipients. A woman I know just got accepted. That may be an option for me as well. And the phone has been ringing constantly with staffing agencies wanting to submit me for contract jobs although I am not a good fit for a large percentage. So I am trying to remain optimistic.
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I`m here
A few more weeks and I`m hitting 7 years. So far I`m healthy, but I was like that even BC (before cancer), didn`t see my family doctor for over a year, oncologist? Well I can`t remember, maybe 4-5 years. But with stage II, grade 3 UPSC, clear cell and endometroid I`m doing everything possible to keep myself healthy.
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Hi Culka, Congradulations!culka said:I`m here
A few more weeks and I`m hitting 7 years. So far I`m healthy, but I was like that even BC (before cancer), didn`t see my family doctor for over a year, oncologist? Well I can`t remember, maybe 4-5 years. But with stage II, grade 3 UPSC, clear cell and endometroid I`m doing everything possible to keep myself healthy.
Hi Culka, Congradulations! I'm not sure if I understand something in your post. Do you mean you haven't followed up with your primary care Dr or your gyn/onc for the last 5 years? If so, how do you know just how healthy you really are? I would be afraid to not have at least an annual checkup with both my primary and my oncologist. I finished chemo and radiation in June 2014 and I am schedule for my 3rd quarterly checkup with my oncologist. I feel fine, but I am still nervous. Reading so many of the threads on this board, i see so many who have had recurrences or metastases while still feeling well. I hope you continue doing well but I don't think I could follow your path. Sandy
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Good girl Culka---checkups?????culka said:I`m here
A few more weeks and I`m hitting 7 years. So far I`m healthy, but I was like that even BC (before cancer), didn`t see my family doctor for over a year, oncologist? Well I can`t remember, maybe 4-5 years. But with stage II, grade 3 UPSC, clear cell and endometroid I`m doing everything possible to keep myself healthy.
You always made me laugh back then. Glad you checked in and doing well. don't neglect your check ups.
Sandy is right, seems that you haven't been keeping up with your checkups.
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Still Alive & KickingInempark said:Good girl Culka---checkups?????
You always made me laugh back then. Glad you checked in and doing well. don't neglect your check ups.
Sandy is right, seems that you haven't been keeping up with your checkups.
Thanks for the roll call. Kelly is still moving forward, she is on her 4 th or 5 th treatment, starting a new clinical trial for Uterine Sarcomas with the Sarcoma Clinic in Santa Monica. she has had another recurrence in her brain, but they used CyberKnife again and for the moment that is clear. she walks around with tumors in her stoMach and lungs but you would never know it. She still works out and walks, as well as vacations in between whatever treatment they have her on at the moment. She is an amazing woman as all of you are! I am going to try to post a picture of her and her doctor, she ran into him today in Starbucks.
God bless you all!
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Missing JazzyTeamkelly said:Still Alive & KickingI
Thanks for the roll call. Kelly is still moving forward, she is on her 4 th or 5 th treatment, starting a new clinical trial for Uterine Sarcomas with the Sarcoma Clinic in Santa Monica. she has had another recurrence in her brain, but they used CyberKnife again and for the moment that is clear. she walks around with tumors in her stoMach and lungs but you would never know it. She still works out and walks, as well as vacations in between whatever treatment they have her on at the moment. She is an amazing woman as all of you are! I am going to try to post a picture of her and her doctor, she ran into him today in Starbucks.
God bless you all!
I thought as I was reading the roll call, how much I miss hearing from Jazzy. She was such an inspiration and is missed. Just wanted to remember her in this roll call.
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I miss Jazzy too. We had theTeamkelly said:Missing Jazzy
I thought as I was reading the roll call, how much I miss hearing from Jazzy. She was such an inspiration and is missed. Just wanted to remember her in this roll call.
I miss Jazzy too. We had the same cancer and were both stage 3 grade c1. I do know about the rest of her path report because she was diagnosed a yr before me by the boards. Her passing was a hard blow to me. I stayed off the boards for awhile because it was to upsetting. But I will be ok and treasure the time I got to know her.
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Checking in
How nice to see your 'all points bulletin', it couldn't have come on a better morning!
i too have been remiss in not writing, for the most part, as others have said, missing those who were there, and fought so hard to the end. It is also heartbreaking for me, and others I guess too to see the Newbeies and feel theiranoc, pain, and the sense of déjà vu or maybe PTSD (Post Traumatic Stress Disorder) is strong.
With gratitude to God I am still here, it will be five yrs in July.
adenocarcenoma Mixed,Clear and differentiated Stage IV B, given an 'expiration date' of 4-6 months if chemo didn't help. Which it didn't, made tumors on four rounds of various chemo combinations. Was never NED, never in remission. Statisticaly if you have recurrance within 12 'mo of primary, then lights out at 12 months. DONT BELIEVE STATISTICS!
Had five rounds Radiation imrt 26-28 times each round. That spot on work helped. Chemo killed me but didn't do nada for cancer.
Sooo, Anti Cancer Book, David Servan Schreiber, undocumented stuff, excersize, one glass red wine a day,72%or more dark chocolate cube, Family, work, swimming, and praying.
Did DNA testing of tumors to cross check them against DNA of chemo, but had too many mutations (100+) for that to work. (An embarrassed Doc told me about mutations, I said: "Doc of I had these before chemo and radiation my kids would really have been very funny looking, so mutations are all due to cancer, chemo and rad treatment!"
Also checked various cancer centers treating various mutations, but would have needed to cut myself up in pieces to be treated all over USA and Europe simultaneously and then, no one place could do it.
Soo went OFF CHEMO of my own volition THREE YEARS ago. Docs hate me, as they ''do' chemo., found one that will follow me and neither of us are Lemmings! Can't do more radiation as I have been rejected because area in question radiated too many times. Will do surgery to roto rooter build up of tumors, to minimize the number of growing ones for the time being.
Your post came just as I wasp brooding Results of yesterday's PET,get them every three or four months as that is only thing that shows anything, ca125 8-15 NORMAL! Ha!
Results show the siX tumors I had four months ago now are 10 tumors, a new little mass 1.5mm on lung, but nine in pelvic place Thank God not in vital organs.
My prayer for us all is may Passover signify that bad buggers will 'pass over' us, and Easter will bring Renewal.
Keep on fighting, Living is the best Revenge,
Power to the Sistehood,
Sara
2015-04-01
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WOW! And double WOW!Sara Zipora said:Checking in
How nice to see your 'all points bulletin', it couldn't have come on a better morning!
i too have been remiss in not writing, for the most part, as others have said, missing those who were there, and fought so hard to the end. It is also heartbreaking for me, and others I guess too to see the Newbeies and feel theiranoc, pain, and the sense of déjà vu or maybe PTSD (Post Traumatic Stress Disorder) is strong.
With gratitude to God I am still here, it will be five yrs in July.
adenocarcenoma Mixed,Clear and differentiated Stage IV B, given an 'expiration date' of 4-6 months if chemo didn't help. Which it didn't, made tumors on four rounds of various chemo combinations. Was never NED, never in remission. Statisticaly if you have recurrance within 12 'mo of primary, then lights out at 12 months. DONT BELIEVE STATISTICS!
Had five rounds Radiation imrt 26-28 times each round. That spot on work helped. Chemo killed me but didn't do nada for cancer.
Sooo, Anti Cancer Book, David Servan Schreiber, undocumented stuff, excersize, one glass red wine a day,72%or more dark chocolate cube, Family, work, swimming, and praying.
Did DNA testing of tumors to cross check them against DNA of chemo, but had too many mutations (100+) for that to work. (An embarrassed Doc told me about mutations, I said: "Doc of I had these before chemo and radiation my kids would really have been very funny looking, so mutations are all due to cancer, chemo and rad treatment!"
Also checked various cancer centers treating various mutations, but would have needed to cut myself up in pieces to be treated all over USA and Europe simultaneously and then, no one place could do it.
Soo went OFF CHEMO of my own volition THREE YEARS ago. Docs hate me, as they ''do' chemo., found one that will follow me and neither of us are Lemmings! Can't do more radiation as I have been rejected because area in question radiated too many times. Will do surgery to roto rooter build up of tumors, to minimize the number of growing ones for the time being.
Your post came just as I wasp brooding Results of yesterday's PET,get them every three or four months as that is only thing that shows anything, ca125 8-15 NORMAL! Ha!
Results show the siX tumors I had four months ago now are 10 tumors, a new little mass 1.5mm on lung, but nine in pelvic place Thank God not in vital organs.
My prayer for us all is may Passover signify that bad buggers will 'pass over' us, and Easter will bring Renewal.
Keep on fighting, Living is the best Revenge,
Power to the Sistehood,
Sara
2015-04-01
I couldWOW! And double WOW!
I could not bellieve my eyes when I saw Sara's name! Unbelievable, yet such a relief!
I was once again reminded of the tough, ongoing journeys of many of the sisters on this site. I have always admired such fortitude when faced with life threatening and/or life altering medical crisis. Sara has been such a trooper with a sense of humor thru her battles and I always enjoyed reading her posts. She, with Dr. Beila, Ro, Jazzy and others provided me with hope and support during my diagnosis and treatment. It is funny how you can hold 'cyber' friends so closely in your heart.
Now if the other missing ladies would come forward. Debrajo has never gotten back to us, but at least we know she is still here. I believe my surgery buddy Sisters 3 is still alive and well. I would just love to hear how others are faring in addition to the 'new' regulars who faithfully post their updates.
Thank you so much for stopping in Sara. as you can see...you were missed!
Kathy
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SARASara Zipora said:Checking in
How nice to see your 'all points bulletin', it couldn't have come on a better morning!
i too have been remiss in not writing, for the most part, as others have said, missing those who were there, and fought so hard to the end. It is also heartbreaking for me, and others I guess too to see the Newbeies and feel theiranoc, pain, and the sense of déjà vu or maybe PTSD (Post Traumatic Stress Disorder) is strong.
With gratitude to God I am still here, it will be five yrs in July.
adenocarcenoma Mixed,Clear and differentiated Stage IV B, given an 'expiration date' of 4-6 months if chemo didn't help. Which it didn't, made tumors on four rounds of various chemo combinations. Was never NED, never in remission. Statisticaly if you have recurrance within 12 'mo of primary, then lights out at 12 months. DONT BELIEVE STATISTICS!
Had five rounds Radiation imrt 26-28 times each round. That spot on work helped. Chemo killed me but didn't do nada for cancer.
Sooo, Anti Cancer Book, David Servan Schreiber, undocumented stuff, excersize, one glass red wine a day,72%or more dark chocolate cube, Family, work, swimming, and praying.
Did DNA testing of tumors to cross check them against DNA of chemo, but had too many mutations (100+) for that to work. (An embarrassed Doc told me about mutations, I said: "Doc of I had these before chemo and radiation my kids would really have been very funny looking, so mutations are all due to cancer, chemo and rad treatment!"
Also checked various cancer centers treating various mutations, but would have needed to cut myself up in pieces to be treated all over USA and Europe simultaneously and then, no one place could do it.
Soo went OFF CHEMO of my own volition THREE YEARS ago. Docs hate me, as they ''do' chemo., found one that will follow me and neither of us are Lemmings! Can't do more radiation as I have been rejected because area in question radiated too many times. Will do surgery to roto rooter build up of tumors, to minimize the number of growing ones for the time being.
Your post came just as I wasp brooding Results of yesterday's PET,get them every three or four months as that is only thing that shows anything, ca125 8-15 NORMAL! Ha!
Results show the siX tumors I had four months ago now are 10 tumors, a new little mass 1.5mm on lung, but nine in pelvic place Thank God not in vital organs.
My prayer for us all is may Passover signify that bad buggers will 'pass over' us, and Easter will bring Renewal.
Keep on fighting, Living is the best Revenge,
Power to the Sistehood,
Sara
2015-04-01
You made my day!!! I have been soooo worried about you. I really feared the worst. Thank you, thank you for letting us know you are still in the fight.
i well understand your comments in the second paragraph. Sometimes I just have to not come here or not post but after a few days, I find myself back. My course has so far been a walk in the park compared to many so I feel a bit guilty even piping up.
keep getting your revenge
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Aw gee wiz..ConnieSW said:SARA
You made my day!!! I have been soooo worried about you. I really feared the worst. Thank you, thank you for letting us know you are still in the fight.
i well understand your comments in the second paragraph. Sometimes I just have to not come here or not post but after a few days, I find myself back. My course has so far been a walk in the park compared to many so I feel a bit guilty even piping up.
keep getting your revenge
thanks so much for the feedback!
Sara
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SaraSara Zipora said:Checking in
How nice to see your 'all points bulletin', it couldn't have come on a better morning!
i too have been remiss in not writing, for the most part, as others have said, missing those who were there, and fought so hard to the end. It is also heartbreaking for me, and others I guess too to see the Newbeies and feel theiranoc, pain, and the sense of déjà vu or maybe PTSD (Post Traumatic Stress Disorder) is strong.
With gratitude to God I am still here, it will be five yrs in July.
adenocarcenoma Mixed,Clear and differentiated Stage IV B, given an 'expiration date' of 4-6 months if chemo didn't help. Which it didn't, made tumors on four rounds of various chemo combinations. Was never NED, never in remission. Statisticaly if you have recurrance within 12 'mo of primary, then lights out at 12 months. DONT BELIEVE STATISTICS!
Had five rounds Radiation imrt 26-28 times each round. That spot on work helped. Chemo killed me but didn't do nada for cancer.
Sooo, Anti Cancer Book, David Servan Schreiber, undocumented stuff, excersize, one glass red wine a day,72%or more dark chocolate cube, Family, work, swimming, and praying.
Did DNA testing of tumors to cross check them against DNA of chemo, but had too many mutations (100+) for that to work. (An embarrassed Doc told me about mutations, I said: "Doc of I had these before chemo and radiation my kids would really have been very funny looking, so mutations are all due to cancer, chemo and rad treatment!"
Also checked various cancer centers treating various mutations, but would have needed to cut myself up in pieces to be treated all over USA and Europe simultaneously and then, no one place could do it.
Soo went OFF CHEMO of my own volition THREE YEARS ago. Docs hate me, as they ''do' chemo., found one that will follow me and neither of us are Lemmings! Can't do more radiation as I have been rejected because area in question radiated too many times. Will do surgery to roto rooter build up of tumors, to minimize the number of growing ones for the time being.
Your post came just as I wasp brooding Results of yesterday's PET,get them every three or four months as that is only thing that shows anything, ca125 8-15 NORMAL! Ha!
Results show the siX tumors I had four months ago now are 10 tumors, a new little mass 1.5mm on lung, but nine in pelvic place Thank God not in vital organs.
My prayer for us all is may Passover signify that bad buggers will 'pass over' us, and Easter will bring Renewal.
Keep on fighting, Living is the best Revenge,
Power to the Sistehood,
Sara
2015-04-01
it isn't so good to see your post. I am glad you are surviving and thriving. I know you have had many problems. I am glad you are still fighting. I agree that we need " the bad buggers" to pass over us. Wishing everyone a Happy Easter.
Please keep us posted as you "Live for the best Revenge". In peace and caring. May you reach that 5 year anniversary in July.
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