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RO

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Beautiful obit for Ro over at Duker & Haugh Funeral Home.  Thank all you ladies for your commits.  Still a little down or in shock, but I am now insearch of another lady who we love who has entered Pallitive Care, the last I heard, July 31.  Love, Debra

 

AWK
Posts: 364
Joined: Mar 2013

Thank you for keeping us informed and reaching out so much.  You inspire and enourage so many of us.  I think you were the first person I saw here that called out UPSC and for me - connecting with the group here was great and made this journey not so lonely.  Which was how it felt in the beginning.  Hugs to you.

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

AWWWW thanks Dear!  I know how I felt when I caught Linda P.'s "Is anyone out there?" question, when I first started.  I, nore anyone else had ever heard of UPSC...though I was the only one.  She was my first life line so if I can, I try to pass on that to others when I can.  Sweet Dreams!  Debra

Diya
Posts: 93
Joined: Apr 2015

very sad to hear about Ro. She was such a beautiful lady inside and out! Sending her love and positive thoughts for afterlife. Diya

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Thank you, Debra.  I feel (in the nicest way) that you are our sheepdog, checking to see we are all in the fold and chasing after those who may be lost.

God bless you for all the support you give to others on this board

Helen xx

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Thank you sweet Hellie!  There is nothing I like better than to be as one with the dogs, love my Labs!  I do feel a bit like the "leader", being one of the older ones on her.  I don't post too much, but always check to see if I can help.  So mny new treatments, meds. trials, that I don't know anything about, but I'm always in the back ground.   I try not to stalk, really!, but I need to see if everyone is in the "fold" before I turn in.  And on a side note, you look beautiful!  Best to you, Debra

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Thank you, Debra, for reaching out and keeping us informed. I read Ro's obituary and it was nice. She lived a full and meaningful life, but left us way too soon. Do you know if she went on her trip? I hope so, as she so enjoyed her travels. 

Warm Wishes,

Cathy

ConnieSW
Posts: 1568
Joined: Jun 2012

She did get to do it.

flyerette65
Posts: 65
Joined: Oct 2014

So sorry to hear about Ro!!! She was an very inspiration woman, always upbeat even when the news was bad. Now she's in a better place, but, wow, not what I was expecting to see.  I haven't been on the boards for awhile. I have two other friends who have been diagnosed with recurrences, one has metastisis to adrenal gland from lung cancer. The other probably has Stage 4 esphoogeal cancer, still waiting to hear test results.  Cancer sucks so much and robs us of so many great people.

AWK
Posts: 364
Joined: Mar 2013

A chocolate and a yellow.  They are my in-home medical team on days after my treatments.  Not to downplay Annie's Army but they have been a huge part of my support along with my horse Cisco.  

I am in a clinical trial right now at Cedars Sinai and will know by the end of August if it is working for me or not.  the trial is being tested across a variety of cancers with solid metastatic tumors that haven't responded to two lines of treatment and are inoperable.  Yesterday pre-infusion I met with a different doctor than my normal one and as we were talking he was very excited to have not only an endometrial patient (I am the only one in the trial) but also UPSC and with a met in my pericardial sac Among others.  I told him I was happy to oblige.  He mentioned that this trial is looking for cellular make ups like UPSC in particular because it is so sneakyAnd not predictive. Turned out he was one of the original developers of the main drug - aldoxorubicin.  I was happy to hear that someone is focused on this category.  Other common types in the trial include ovarian, lung, colon.  Super interesting.

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

Ann, this is such great news not only for you but for all of us counting on you to get better and to help in the fight long term. It is so nice to hear of the excitement and enthusiasm by this doctor. Gives us hope. I had a lab that I lost to cancer 4 years ago. I miss him to this day. They are the BEST of friends and companions. Glad you have two in your life.  Sending lots of love, Cindi

RoseyR
Posts: 471
Joined: Feb 2011

 

What a great lady.  Among many stalwart survivors, you were the most giving and gracious and upbeat of us all!

Rest in peace, lovely lady: If there is a heaven,  you will be an archangel!  You gave so much advice and encouragement 

to so many. You will never be forgotten!

 

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Ro will live on in all of our hearts. She was the shoulder we leaned on, the one to whom we expected to say just what we needed to hear at just the right time. My only regret is that I never met her in person or heard her voice. Many people, including my dear parents, seem to be here right next to me whenever I remember the sound of their unique voices.

We are all puzzle pictures and the individual puzzle pieces that comprise the tapestry of our lives are composed of the sounds and sights of loved ones. Ro is right there in my own puzzle picture.

Plant that colorful riot of floral display in your Creator's garden, dear Ro! We will some day thank you for your generosity!

With Love My Friend,

Rest in Peace,

Cathy

ConnieSW
Posts: 1568
Joined: Jun 2012

I love puzzles and your analogy.

elpasorudy's picture
elpasorudy
Posts: 84
Joined: Jan 2013

Sorry to learn of Ro's death. She was a courageous, compassionate and caring woman. Ro provided support to Mary Ann during her battle with UPSC, and it was much appreciated. I had the pleasure of meeting Ro and her husband Tom for lunch here in Florida. My condolences go out to Ro's family. Wishing much joy and good health to the CSN group. Stay positive, stay strong, stay together and just keep moving along.

MarianneMushroom's picture
MarianneMushroom
Posts: 3
Joined: Oct 2014

Sorry to read about RO. Rotten news. I check here infrequently, mostly because I know someone will be gone, and that makes me sad(der). I hate living with upsc, knowing the statistics, reading here that another has died. I'm still bummed about Linda Procopio.

 

I was staged at 1A, but at the time there were nodules in my lungs too small to biopsy. The plan was to keep looking at those nodules and hope they were something benign. Just something to keep an eye on, stable for more than a year after chemo. But - now one has grown one mm bigger. Damn! It still could be something benign, but what are the odds with upsc (what? 5-10% of uterine cancers but maybe 40% of uterine cancer deaths)? Damn! 

 

Unless something else gets me first (deer vs car, MI, stoke, etc), this cancer will get me. I know it.  It's a time bomb. I spend my days alternately determined to live my life happily and feeling weighted down by doom. Every decision is based on whether I'm feelilng hope or despair. Should I eat healthy or pig out? Should I give my possessions to somebody else or keep them to enjoy? Should I buy that thing? What does it matter? Everry choice has become symbolic. Blah! Take a nap. Try again.

 

My plan is to wait 6 months for a lung biopsy. Get my house and my life in order, then make decisions. More treatment? Ick! I was cheerful and brave the first time, but I don't think I'll do it again. What's the point of going up and down these hills and valleys? That cancer monster will be chasing me up and down and up and down forever. It Sisyphean! Not my thing.

 

I see the medical oncologist this week for her opinion. My radiation oncologist recommended the biopsy. Don't let anybody bash Obamacare, because without it, I'd already be dead. One thing is certain, I will not beggar my husband with medical bills. Will not! So, thank goodness for Healthcare.gov. That needed to be said.

 

I didn't write for encouragement or advice. I wrote here just to get things off my chest. Got to get it out or I think I will either explode or melt into a puddle of lukewarm, poxy goo. Bah! Humbug! Damn!

-MM

 

 

ConnieSW
Posts: 1568
Joined: Jun 2012

You and I had the same diagnosis and I am 3 years NED.  I am posting to say we seem to be on the same wave length In how we dealt with this in the past and how we might deal with it in the future so thank you for laying it out.  Although I am fortunate enough to have great insurance, I am grateful for the Affordable Care Act for you and everyone else who needs it.  Beats me how anyone would want to see a fellow human denied or impoverished by the need for health care.  I, too, still get upset about Linda and the other fine ladies we have lost.  I'm hoping your nodules still turn out to be nothing.  Good luck and please let us know how it goes.

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Your comments, resonate with me, MM.  Although I live in the UK, so we have a great National Health Service and no bills unless we choose to "go private" - perhaps for some new, specialised treatment, not yet available on the heath service.  Then the costs, like the US, are very high.  But living with recurrence (I've been through several recurrence cycles since 2007) does, indeed, change the way you think about things.  I, too, alternate between the highs and lows of living well, living carefully, throwing caution to the winds etc etc.  I feel like I am living with the Sword of Damocles above my head, ready to drop at any time. Although I live a good quality of life, there is not a single day when the  cancer worm does not enter my mind.  I would love to be free of that!  But this is the way it is and I also feel grateful that I have been given more time than many ladies on this board (and in my support group in the UK).  You said it so well, MM - "damn"!

Kindest wishes
Helen

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

I, too, have my ups and downs. I think about my cancer everyday and I wish this "cancer worm" would disappear. Cancer worm is a perfect description, Hellie. Should I give my jewelry to my sisters and nieces? Should I plan a Rhine River cruise a year from now because "what if" I won't be able to do it? Should I quit my full-time job so that I get a chance to experience a good quality retirement before my health deteriorates? Should I wait until I am 63.5-years-old when I retire so that I can pay close to $700.00 monthly for Cobra insurance? Cobra insurance can be purchased up to 18 months and that would take me to age 65 and Medicare eligibility age.   Is my Will up-to-date?

 It saddens me to think about the many fine women who posted on this Board and are now gone. I miss the posts from Ro, Linda and Maryann to mention only a few.

flyerette65
Posts: 65
Joined: Oct 2014

Hello All,

I too have those days wondering what the hell I'm doing trying to exercise, eat right and live a somewhat conservative life just waiting for the UPSC to rear its ugly head again because I know it will. If something else doesn't get me (like the deer that I feed stampeding me to death, MI, Stroke, accident, fall, etc) that's the way I'll go down as well.  I've seen my grandma and mom both die from cancer. I now have a very close friend who just found out she's had a lymphoma recurrence, seven years after she thought she was "cured".  She did chemo, lost her hair, did radiation and had to do a donor stem cell transplant because chemo and radiation didn't work.  I'm taking her Friday for her biopsy -- I've been accompanying her to all her doctor appointments because you need some moral support during these difficult times. She was supposed to get a CT scan in December but moved it up to September because she just felt something was wrong.  She kept telling me her cancer was back and now she's got a "do over". One of my neighbors just died 2 weeks after she was diagnosed with lymphoma. How do we get through these difficult days? I have started reading the Bible, trying to get out and exercise, etc.  It is what it is unfortunately and we have to live with it. Cancer sucks!

AWK
Posts: 364
Joined: Mar 2013

Live fully and also do the normal things that we don't love.  I have never been NED so I can't relate to that stress of waiting which I think can more stressful in many ways than continuing the fight.  Others should chime in.  Cathy aka Abbycat has good insight  shares.  Hugs.  Anne

Pat51
Posts: 130
Joined: Feb 2011

I know EXACTLY how you ladies feel.  The cancer worm visits me daily too!!  I have been contemplating retiring.  Telling myself to do it before I am sick again and will not be able to enjoy anything.  As I, too, feel that it is only a matter of when that will happen.  Cancer takes away your vision of the future and puts a great big ?? mark there!!  Like you Abbycat.... can I plan a vacation or will something happen that I cannot go??   Should I retire??  Will I just sit in the house and think about cancer if I am not working??  I hate this cancer and the sword that is always hanging over your head(Hellie)!!  I have been doing everything that I did before I was diagnosed...no change in excercise or diet....if I recurr ....have I caused this myself???  Ups and downs......I hate CANCER...it really SUCKS!!!  When I read of losing another wonderful lady to USPC it saddens me.  I wish that there was as much research for a cure done for this cancer as some others out there.  I am so glad to know that there are other ladies in the same emotional place that I am...now I don't feel so alone or as if I am too dramatic about this whole cancer thing.  It helps just to vent sometimes!

SettledSue's picture
SettledSue
Posts: 55
Joined: May 2012

Abby, I agree it is so hard to make plans not knowing if or when cancer will recur. I retired 7 months before age 63.5 to experience a good quality retirement. So far I am happy I did, even though it is expensive. My Cobra insurance for my husband and me is over $1400 a month and our 18 months are up in December. Then I will have to go on an Obamacare plan which will cost even more for seven months until I turn 65.  Sue

Pat51
Posts: 130
Joined: Feb 2011

I am so sorry to hear about RO.  I knew that she had been having some problems with lungs and treachea.  She was always such an upbeat person and a true warrior of this cancer.  We have lost a great warrior.  So Sad!!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2895
Joined: Mar 2013

Ladies!  With the great help of the ACS staff (thank you, thank you, thank you) I have finally been able to post the picture of the sign I made at the Race to End Women's Cancer in Washington, D.C. on Sunday, November 8.  

I hate having to add names to this wall but I will never forget the wonderful ladies I have gotten to know.  

May God guide the researchers to cure this disease. 

 

 

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Thank you so much for this No time!  I know Ro would get a kick out of being remembered!  I often think, when the seasons change, that for winter would be in Florida and then in Spring,Well Ro would  be back in Ill. in her garden....her therapy.  Thank you again!

 

 

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