Pole dancing in teal
My 2 year "cancerversary" is in a few days. I was first diagnosed on May 3rd, 2012.
Physically I am exactly in the same condition as I was 2 years ago. Recurrent cancer is uncontrolled, CA125 is 800+, moderate pain, yesterday I had 4.4 liters ascites drained and as of tomorrow I will be getting daily IV fluids at home in addition to the trial drug.
Some negative things I aquired in those 2 years: scars, peripheral neuropathy, memory loss, weight gain and menopausal symptoms. Some things I lost: uterus, ovaries, omentum, hair (it grew back), my job (good riddance!), and sense of control.
Compared to 2012 today I have a new appreciation of life, friends and family, plenty of free time and more medical knowledge. I no longer have job-related stress and BS drama, I don't worry about getting old, I can get away with morbid jokes and most importantly I've met many wonderful people along the way whom I am proud to call my friends.
I see my progressive L.M.C. (or Low Marble Count) as a defense mechanism: I can't focus on being sad, scared or anxious long enough for it to affect my mood.
All things considered, life is good.
Comments
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Congratulations, Dear Alexandra!
For those of us on this journey, we know how precious each milestone is. I love your can-do attitude, your enjoyment of racy jokes, your saucy sense of humor, and your warm and loving support to the women and men on this board. May the trial drug kick your cancer's butt to the curb once and for all, and may you enjoy many, many more years of the good life.
Hugs,
Kelly
P.S. Looking good in those pictures!
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pole dancing
good summary & truthful - it iis a continual effort of mind over matter to function thru these things 12 yrs as one-side psralyzed, disabled stroke survivor takes constant reminders to let the old efficient,independant, social Susan go & try for a new noirmal l& reinvented Susan not easy but enough tears & I might be at acceptance.
After stroke , I was advised it was a life- altering event & I would have to go through the 5 ststages of grief grieving for the loss of my old life - AND I believe itris the same for our cancer journey- it takes alot of emotion & work to accept the hands life deals us some times. .
.
wishing you Spring soon - which wlould help after this ukky weekend that won't quit
Wqe goit to 20 C today & tomorrow - then flurries for the weekend.
take care from Susan P from Alberta
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2 years!
Keep kicking cancer's butt!
You look great doing your pole dance!
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love the pole, love your attitude!
Hang in there, we all love you! You are the heart and soul of this board so we need you around to help us understand what's going on and , more importantly, to make us laugh. You have taken pole dancing to a new level! Let the music begin!
I didn't know that there was an option for fluids at home. This go round I opted to do my Neulasta shot at home which saves me a trip to the hospital. Instead of a 2 hour ordeal (get to the hospital, check in, wait, wait wait til they get the shot from the pharmacy, wait some more and wait again) to get a 3 second shot, I give it to myself at home. I have to pay for it ($5000) on my credit card, but my insurance reimbursed within 10 days so that worked out. If I ever need fluids, which I will, I will ask about the home option. I wonder if I could do my own transfusion? That's another time suck, at least 4 hours for 2 bags.Given how exhausted I feel after 1 round of treatment, that's also in my future.
Be well, Alexandra...hopefully you will be able to post soon that your ca125 is going down and that you feel better overall. Meanwhile, continue to pole dance in Teal for yourself and all of us! BTW your new photos are great!
xoxo Susan
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I pump and poleHearty Pioneer said:2 years!
Keep kicking cancer's butt!
You look great doing your pole dance!
just finished my pole dance...now on to getting back in the swing of things. My cancer journey ....you know who your friends are...glad to wake up every morning..my family and doggie...great Dr and nurses and care..on the down side..gave up nursing..numb feet.. No hair..lashes.brows..fatigue...countless blood draws..foods tastes like crap...can shop for only awhile now...less income...blah blah blah....best of all I have my teal sisters who I couldn't make it without..loving,caring.smart..funny.love to all...Val
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I was thinking of a different pole dance !
Given your style and great attitude you will soon be on the pole that is more fun. I always look forward to your posts. They are always informative , yet you always make everything fun. I wish we could celebrate your anniversary in person , maybe next year !
Colleen
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I admire you
Hi Alexandra,
All that has happened to you reminds me of all that is and has gone on with me too wih the except I still have my job and working. Thanks to the wonderful boss I have. I just admire you being so positive and all the neat post you put on here. I will be honest and say I haven't been quite as positive since my reoccurence which was a year ago. I don't post alot but I read and get on her about everyday. It helps me to cope much better. Thanks and all you ladies you are in my thoughts and prayers.
Nadine
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Alexandra you crack me up...Nflinchum said:I admire you
Hi Alexandra,
All that has happened to you reminds me of all that is and has gone on with me too wih the except I still have my job and working. Thanks to the wonderful boss I have. I just admire you being so positive and all the neat post you put on here. I will be honest and say I haven't been quite as positive since my reoccurence which was a year ago. I don't post alot but I read and get on her about everyday. It helps me to cope much better. Thanks and all you ladies you are in my thoughts and prayers.
Nadine
Alexandra you crack me up... You have such a fantastic attitude.... I just love it... I have been busy lately and have not been on much. Have you started your trial???
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You have my gratitude
I won't say congratulations on your recent anniversary--I can't see it as an occasion for congrats. I'll just say I appreciate all you have brought to this site, your wit & intelligence, & all the help & understanding you've given me. I look forward to hearing how your trial goes. Keep it up, & we'll all kick cancer's butt together!
Best always,
Carole
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Update
PARP trial drug Rucaparib is working. My CA125 is down by 303 points in 2 weeks. It is still high (497) but there is light at the end of the tunnel and hopefully it's not an oncoming train. No side effects to complain about, except water tastes rusty (I squirt Mio into it).
Had 0.5 liter ascites drained today compared to 4.4 liters last week. I can eat, breathe, climb stairs and flirt with strangers again.
My daughter came home yesterday night from the bus trip across Europe (9 countries in 12 days) with a ton of laundry, thousands of pictures and endless stories of youthful debauchery. If anyone wants to treat their teenager or young adult to an unforgettable vacation for a reasonable price look up https://www.topdeck.travel/tours/europe-express
Thank you dear friends for encouragement and support!
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I am beyond excited forAlexandra said:Update
PARP trial drug Rucaparib is working. My CA125 is down by 303 points in 2 weeks. It is still high (497) but there is light at the end of the tunnel and hopefully it's not an oncoming train. No side effects to complain about, except water tastes rusty (I squirt Mio into it).
Had 0.5 liter ascites drained today compared to 4.4 liters last week. I can eat, breathe, climb stairs and flirt with strangers again.
My daughter came home yesterday night from the bus trip across Europe (9 countries in 12 days) with a ton of laundry, thousands of pictures and endless stories of youthful debauchery. If anyone wants to treat their teenager or young adult to an unforgettable vacation for a reasonable price look up https://www.topdeck.travel/tours/europe-express
Thank you dear friends for encouragement and support!
I am beyond excited for you.... This news has made my cruddy day great......
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mazel tov!
that's what we want to hear!
i WANT A PARP!!! My gyn/onc is meeting with the rubicarp/olparp people to argue for me next month.
In the meanwhile, after 1 round, My ca125 is 12.4...heading in the right direction. When i said, oh thank god i can stop chemo now, he just looked at me and shook his head sadly....well, I tried.
So happy for you Alexandra!
xoo Susan
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scatsm said:
mazel tov!
that's what we want to hear!
i WANT A PARP!!! My gyn/onc is meeting with the rubicarp/olparp people to argue for me next month.
In the meanwhile, after 1 round, My ca125 is 12.4...heading in the right direction. When i said, oh thank god i can stop chemo now, he just looked at me and shook his head sadly....well, I tried.
So happy for you Alexandra!
xoo Susan
You keep dancing that pole, Alexandra, and I'll keep cheering.
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YOU GO, GIRL!
You are truly amazing, Alexandra, as are all of you ladies. And Alexandra, you are inspiring, and have gone through so much. But to find something positive in everything, I believe, is the best way to get through any trying time. Keep up the dancing, Alexandra! And keep up your smiling - you bring lots of sunshine to this board!!!
(((HUGS)))
Monika
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Yeah and Hooray!Alexandra said:Update
PARP trial drug Rucaparib is working. My CA125 is down by 303 points in 2 weeks. It is still high (497) but there is light at the end of the tunnel and hopefully it's not an oncoming train. No side effects to complain about, except water tastes rusty (I squirt Mio into it).
Had 0.5 liter ascites drained today compared to 4.4 liters last week. I can eat, breathe, climb stairs and flirt with strangers again.
My daughter came home yesterday night from the bus trip across Europe (9 countries in 12 days) with a ton of laundry, thousands of pictures and endless stories of youthful debauchery. If anyone wants to treat their teenager or young adult to an unforgettable vacation for a reasonable price look up https://www.topdeck.travel/tours/europe-express
Thank you dear friends for encouragement and support!
So happy to hear the CA125 is headed down and the ascites is easing up!
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Hooray for you, too!scatsm said:mazel tov!
that's what we want to hear!
i WANT A PARP!!! My gyn/onc is meeting with the rubicarp/olparp people to argue for me next month.
In the meanwhile, after 1 round, My ca125 is 12.4...heading in the right direction. When i said, oh thank god i can stop chemo now, he just looked at me and shook his head sadly....well, I tried.
So happy for you Alexandra!
xoo Susan
Keep smacking that cancer! You have it in retreat now...keep smacking it!
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Great Picture.
Dear Alexandra, you always brighten my day. You have the gift of humour,
thoughtfulness, strength and devilment and that is what makes you
so endearing. On top of this you also show positivity which is a quality that
is essential to all of us but is difficult sometimes to feel. I hope you celebrated
your cancerversary with much enjoyment.
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RosamondRosamond M said:Great Picture.
Dear Alexandra, you always brighten my day. You have the gift of humour,
thoughtfulness, strength and devilment and that is what makes you
so endearing. On top of this you also show positivity which is a quality that
is essential to all of us but is difficult sometimes to feel. I hope you celebrated
your cancerversary with much enjoyment.
Described you to a T, Alexandra.
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Another update - have to brag...
4 weeks after starting the drug trial - CA125 dropped by 595 points, today's number is 205.
No side effects whatsoever. I feel fine. And I lost 13 lbs, which brings me from morbidly obese into pleasantly plump category!
Thank you and many hugs!
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