CSN Login
Members Online: 11

Pole dancing in teal

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

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.

IV pole

lovesanimals's picture
lovesanimals
Posts: 1227
Joined: Sep 2011

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!

Susan P's picture
Susan P
Posts: 59
Joined: Sep 2013

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

Hearty Pioneer's picture
Hearty Pioneer
Posts: 126
Joined: Apr 2013

Keep kicking cancer's butt! 

You look great doing your pole dance!

poopergirl14052's picture
poopergirl14052
Posts: 1148
Joined: Nov 2010

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 

scatsm's picture
scatsm
Posts: 235
Joined: Apr 2013

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

Cafewoman53's picture
Cafewoman53
Posts: 734
Joined: Jul 2010

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

Nflinchum
Posts: 73
Joined: Jun 2012

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

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

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??? 

 

 

seatown's picture
seatown
Posts: 212
Joined: Sep 2012

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

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

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!

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

I am beyond excited for you....  This news has made my cruddy day great......  

wholfmeister's picture
wholfmeister
Posts: 249
Joined: Dec 2012

So happy to hear the CA125 is headed down and the ascites is easing up!

 

scatsm's picture
scatsm
Posts: 235
Joined: Apr 2013

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

ConnieSW's picture
ConnieSW
Posts: 542
Joined: Jun 2012

You keep dancing that pole, Alexandra, and I'll keep cheering.

wholfmeister's picture
wholfmeister
Posts: 249
Joined: Dec 2012

Keep smacking that cancer!  You have it in retreat now...keep smacking it!

mopar
Posts: 1948
Joined: May 2003

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

Kiss

Rosamond M
Posts: 87
Joined: Apr 2013

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. 

ConnieSW's picture
ConnieSW
Posts: 542
Joined: Jun 2012

Described you to a T, Alexandra.  

GSRon's picture
GSRon
Posts: 1183
Joined: Jan 2013

Hmmm... Let's see...  Alex flirting with strangers... yea right..! Laughing Tongue Out Cool

Glad to hear the new treatment is working..!!

Ron

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

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!

 

 

ConnieSW's picture
ConnieSW
Posts: 542
Joined: Jun 2012

I've had fingers and toes crossed for you.  Think that helped?

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

You are amazing!!! So pleased and proud of and for you!  Keep Trail blazing Alexandria....your info and knowledge not to mention you determination are just mind blowing!  Do you not have Chemo Brain at all?  Keep the info at your fingertips for all us foggy one who can't remember our own names!   Keep going girl!

Smile Debrajo

wholfmeister's picture
wholfmeister
Posts: 249
Joined: Dec 2012

Yeah and hoorah!

this is the best news in a long time!  

Be honest! Which pleases you more: the CA125 or the 13 pounds!

Hearty Pioneer's picture
Hearty Pioneer
Posts: 126
Joined: Apr 2013

Yeah, your numbers went down! Glad the trial is working!

GSRon's picture
GSRon
Posts: 1183
Joined: Jan 2013

Awesome..!!!!!!   Love that good news...! Besides, you deserve good news..!  Pizza and Beer time..!  Laughing

Ron

kimberly sue 63's picture
kimberly sue 63
Posts: 396
Joined: Apr 2012

Im so glad for you and the decreasing CA125. But most of all that you are feeling better!! Yeah for PARP!!! Kim

scatsm's picture
scatsm
Posts: 235
Joined: Apr 2013

I can't tell you how happy I am to hear about your ca125.......brings tears to my eyes! and the weight loss isn't bad either! Please keep bragging and know we are behind you all the way to NED!

xoxox Susan

 

 

poopergirl14052's picture
poopergirl14052
Posts: 1148
Joined: Nov 2010

your pole dancing days are numbered. Your Ca-125 is really good! Glad you are feeling well and have very little side effects..stay strong..Val 

kikz's picture
kikz
Posts: 1267
Joined: Jun 2010

So glad to read this news.  I have to admit I also expected to see a different pole when I checked your post.  

Karen

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network