Today

I saw in black and white the form for my employer with the dx of ovarian cancer.  I do not feel sick today altho my belly increases in size seemingly by the hour (ascites I suppose.)  It is Wednesday nite.  Surgery is Monday, if  I go along with the plan, thereby accepting that I will be friggin sick for the rest of my life or whatever is left of it.  My question to those who are battling every moment as I see here:  is it worth it?   Do you have any time when this disease does not overtake your every thought?   Do you know anyone who decided to just go out quietly?

[vegas2cr]

Every single minute no every single second is worth the fight. You know I was diagnosed with stage IV last year... yes I was sick for a while yes I had 2 surgeries but today June 12 I feel like a million dollars and will enjoy every moment I have... I enjoy the sun coming up, my dogs running with me, my family, everything...
It is so normal to be frightened...You WILL be fine... Don't listen statistics, friends horror stories or such... listen to your heart which belong to your husband and family... love Ronni

[bohan54]

Guess I was feeling a tad maudlin last night.  It comes and goes. You are very kind.   Sorry for the self pity...  Off to work, last day sans make up, will surely cry it off anyway!
Love, Sharon

[Jan214]

Sharon, if you want me to quit worrying about you, than quit giving me reasons to.  :-)You don't even know what your situation is yet. Unless I missed a post, you certainly don't know that you have ascites.  That could be anything.  Mine was out to next week, but I didn't have ascites.

I know you are afraid.  All of us have been where you are but no, I don't know anybody who decided to just lay down & die.  We have lost to many to just quit.  We fight for ourselves and we fight for those who are no longer here to fight.  It would be disrespectful to do anything else.

With my second drug, Gemzar, I was in the hospital 8 times for dehydration.  I wondered at that time if it was worth it, because when you are really sick you do wonder if it is worth the fight, but every day that I get to sit in my garden with my head in my husbands lap and watch my flowers, water pool, birds, butterflies and hummingbirds is a day or hour or second worth fighting for.

You are going to go through a lot of emotional changes with this and as with death, there are stages.  You will get to acceptance and you will have a good life in between the garbage that cancer is.  

You should start writing journals. That really helped me get through the emotional minefield of diagnosis, surgery, chemo, and just knowing you have cancer.

There are never moments when your life isn't about cancer, at least for me being on constant chemo, but that doesn't have to be awful either.  It is an adjustment, just like becoming handicapped...you adapt, you fit it in around your life but it doesn't become your life.  Don't let this become yours.

I know how hard it is but please, try to de-stress before you go into your surgery.  Do some yoga, listen to some new age music and chill.  If you want peace, you have to make a concerted effort to get it.
Take care of you
Jan
.

[vegas2cr]

Let me explain the proper way to have a pity party.. First feel miserable... set the tiimer for 15 minutes, scream yell cry curse and  when the timer goes off the party is over... Now that is how I do my pity party...You can allow yourself a pity party but you must set a limit... kind of like I will have one glass  of wine and drive not 2.. so 15 minutes thats the limit... Got it???

[withe]

Must say we are all entitled to a pity party but not every day or every hour.. to much on this earth to be enjoyed and be thankful for. Agree with the fifteen minute rule....I do my crying in the shower.

[nyc lady]

My stomach was extremely distended and the pain was  horrible....got worse and worse...I had all the classic symptoms....I ended up in the ER because of the pain, they did a CT Scan and there were huge cysts - 4 one on each of my ovaries and tubes...the largest was 22 cms....I was admitted, that was a Sat, the surgery was on Wed...did I have Ov Ca...yes, but, it was caught early....even with all the symptoms...and I had every single one of them, I was in Vegas the week before and never made it to a casino because by the time evening came along, and I mean like 7pm, I was to tired to move and there were issues with the bathroom, I couldn't eat more than a few bites....and it was stage 1A.  
Soooo to worry about the outcome now, you don't know what you are worrying about....they truly cannot diagnosis and/or stage Ov Ca before surgery....we all have such different stories to back that up.  And, I promise you, whatever the outcome is, the wonderful people on this forum will help you through it.  
Do women really survive this disease....yes they do, there is someone in our NOCC chapter, almost a 21 year survivor, another that has been 7 years on maintenance (arimidex) and while she is not in remission, she is stable.  
Don't blame you for being nervous, the surgery alone is enough to frighten anyone...and the waiting is also enough to make you crazy.
Hang in there...before you know it we will have a lot of answers.
Thinking of you,
Pam

[PF_PVD]

My primary care provider (not even an onc) had no trouble diagnosing my ascites just through an exam (she tapped on my belly and rolled me around and listened for shifting fluid) and then a CT the same day confirmed it.  Two days after my exam, I was at the hospital having the ascites drained (instant relief) and the pathology checked (malignant).  They drained it again the following week before I started chemo. Surely you've had an exam and a scan already if not the paracentesis.  If none of this is happening to you, I would be seriously worried about my medical care.  And I think I asked you before what your CA125 is, or have you not had that done either?

[PF_PVD]

Also, I should have mentiioned that like Ronni I am stage iv and had no remission and two surgeries and several hospital stays and have been in treatment most of the last 10 months.  My onc says to expect a lot more treatment going forward.  Not once did I consider not doing all of this.  Frankly, I feel I have had more good days than bad or if not then the pleasure and joy of the good days far outweighs the bad ones.  Also, although it's completely and always my decision what to do, how would I ever explain a decision to just give up to my family?

[bohan54]

Great suggestions.  Pity party over for now.   You guys are so good, you should charge by the word...
CA 125 was done but they have not disclosed the # to me.
CT scan revealed ascites in the abdomen,  5cmm mass on left ovary, and nodules on the lymph nodes and omentum, and some spots on the liver and bladder.  
Doc called me at home yesterday but I missed it.  Calling him now since he actually gave me his cell #!

[crecco]

As the others have told you, you have every right to be scarred. And even more so to be worried. We all have to have a pity party at times, if we didn't it would drive us nuts.
  Like Ronni, and PF_PVD, I was also dx at stage 4, back in No 05. I have not had a real remission either and have been on chemo non-stop since. Has it been worth it? You damn right it has been . I am not ready to go anywhere yet. I decided 2 days after my dx that I was going to fight this with everything that I have. There are still things I want to do in my life, places I want to go, and people I want to see. Whether I get any of those things done, well it really does not matter, at least I am still here. I was also told that I would probably be on chemo for the rest of my life. that was rather upsettin at first, but then I decided that if that was what it would take to keep me here, then that was what I would do.
  I hope that you get good results from your surgery and that your recovery will be fast and easy for you.
  Chris

[PF_PVD]

I must tell you I am sorry that I didn't express as Chris said the right you have to being scared, angry and sad.  Don't let anyone tell you you can't ever think that way because it's going to happen and they don't know what it is like for you.  I luckily or unluckily escaped the waiting period.  I was diagnosed, had a port installed and was slapped into a lounger for chemo so fast it made my head spin.  I know now that isn't a particularly good sign, but as I said at least I was spared the wait.  I hope all your worrying is for nothing.  No offense, but we don't want you in this club!  Paula  

[SuzyQ67Cqy]

I'm new to this site and still waiting on a diagnosis.  In reading various postings I'm kick my own pity party *** off the couch.  It could be worse but that's what freaks me out.  My mom was diagnosed last year, just passed the anniversary, bloating was impacting her breathing and with a hospital trip came draining and detection of cells - stage IV, chemo within a week, surgery 3.5 months later, and a good surgical report.  Followed by a few more chemo's just to be sure and over Christmas while I was out of the country she took an unexpected turn.  Seems her bowels/intestines stopped working.  An emergency flight home mid-January from overseas and four weeks later she passed at away at home  peacefully in her sleep while I watched over her.  Toughest thing I've done but I wouldn't have missed that time we had together.

A few months after her diagnosis I had an annual and being I was 40 and going for my mammogram I asked for some ovarian screening as well.  When I called bookings were into January so with me planning on being out of the country mid-Dec thru early Mar my appointments were upon my return in March.  At that time there wasn't any other family history, or so we believed.  After a few months and speaking with some older relatives it seems that my maternal grandmother also died of ovarian (age 54) as well as her mother (not 100% but most likely) (age 60+).  My mom passed just shy of her 65th.

By the time I go for my screening mom has passed, no one has mentioned BRC genetic testing to either of us (and now it's too late).  My first u/s results are inconclusive, unable to see R ovary, but a mass is noted on the left (I still haven't seen this report).  So my family doc sends me to a GY/OB ... on an emergency "must come in today" phone call to be told "there's a shadow" and I'm referring you ... with no details or discussion.

Couple weeks later I see the GY/OB.  He does an internal and can't feel anything.  I explain the family history and he dismisses the u/s with the "normal cyst" discussion but sends me for another u/s.

Mid-April I have the u/s and get the results, or should say have a shock delivered to me in the most casual of ways.  I don't recall much other than there was not question of symptoms, discussion of increased risk, no mention of the "c" word ... just "you're done having kids aren't you?", I'll remove the left, possibly the right and maybe the uterus too.  I think the utter horror on my face is all that stopped him but still no explanation.  So I leave in shock with a surgery date in September, having signed my life away for removal of everything, papers to do some lab work, and a request in for a CT scan.
Great timing, just as I'm leaving for Vancouver to clean out my mom's closet for my step-father and the gathering, in lieu of a service, for friends and family as my mothers direction, and an out of country wedding already booked.  So I bury all of that do deal with everything else and try to enjoy my vacation.

Which brings us to now. I'm back to work, 3 wks in after 5+ months off, and I am reading my 2nd u/s results and lab work.  My CT scan has been changed to an MRI "based on the Radiologists recommendation from reading my file", not sure what that means either, but my MRI is next week.

So of course the queen of internalize is now bubbling over and I have more questions than answers.  My CA125 is 63.5 ... really not good from what I can tell, I have a 3 generational family history that I feel is being ignored, my GY/OB is doing surgery without discussion of options, no inquiry or discussion of other symptoms ... after reading I have some and am now be coming a hypochondriac!LOL.  Plus the other day when I went back to my family doctor she basically refused to send me to a gynec. oncologist for second opinion.  Hence my rambling here.  I've had a couple days of severe emotional freaking out.  Do I try for the new job opening at work, do I plan for 2wks off or 8 wks off after surgery, do I plan my winter vacation or will I be doing chemo???

The u/s report was as follows:
Uterus is normal in size, no focal abnormality noted, no abnormal vascularity seen.
There is a complex mass in the left adnexa.  It is inhomogeneous and most likely to be arising from the left ovary.  It measures 5.8x4.3x6.2 cm.  The right ovary was identified today and also appears bulky measuring 3.8x4.8x4.7 cm.  It is inhomogeneous with at least one complex cyst measuring 2 cm.  There is minimal vascularity in the ovaries.  There is no evidence of free pelvic fluid.
IMPRESSION:  Bilateral ovarian masses, larger on the left.  Neoplastic disease can not be excluded.

I understand that the diagnosis of cancer can only be made with surgery but I guess I am now wondering why no discussion of what my increased risk is with family history, how the CA125 impacts the risk (if any), and what about prevention ... regardless of cancer or not shouldn't a discussion be had about removing it all in prevention and if so why wouldn't we plan for this rather than plan for the least?

Me being an accountant the chaos and inability to control / organize the future is really driving me.  I just used most of my sick leave, do I need to make arrangements for disability? etc

The good thing is all my stressing has made me talk to a few people, and I've booked an appointment with the Gy/Ob for next week to discuss.  I'm bringing along a "buddy" to do my questioning if the words fail me and the emotions take over, which they've been doing of late.  I just want to be informed.  I think I'll push him for a second opinion to the gynec oncologist for safe measure.

My apologies for the rambling.  To Bohan ... I wish you strength.  Here's to hope ... it's what keeps us going!!!

[Lafnatitall]

Bohan, I love you, ya know...and I love life.  Sit for a moment in your favorite spot...breathe.  Breathe the happiness and life into your lungs...feel it enter your bloodstream...trace it as it travels to your soul...and then breathe again.  Repeat after every 15 min 'party'... Oh, by the way, about those 15 min parties...you can't have them back to back!  And only one a week!  (You know I'm chuckling now, don't you?)

SuzyQ...take charge, darlin'.  Find your own d**n gyn/onc!  Forget about someone else telling you what will and will not happen to your body!  Of course you go for the new job opening at work!  Of course you continue to plan your life because there is still your life right now to plan!  Before you go into surgery, apply for your EMLA and your short term disability benefits.  

Yes, just the mere thought of having ovca is enough to make us all want to run for the woods!  Instead, arm yourself with knowledge...turn around and realize the power YOU have...quit giving it over to the docs!  And don't rely solely on an ultra-sound either...my ultrasound showed that I had a right ovary with great bloodflow...I didn't HAVE a right ovary!

Bohan, Suzy:  Keep coming to this site...we will love you unconditionally, cry with you always, and try very, VERY, hard to keep you armed with knowledge and laughter.

Happy thoughts to both of you...

[bohan54]

I remember my husband tellin me to breathe (just like Lamaze classes told him to) when I was in labor with our only child.  Don't want to get banned from the forum so won't repeat what I said to the poor man.
Seriously, I will try your technique and let ya know if it works!   Got my Xanax prescription just in case!
Love ya,
Sharon

[momofsandj]

I'm starting to feel like a weakling -- my hysterical pity parties last 24 hours after bad news and then i don't have them again -- I guess I cram all my 15 minute parties into a pity orgy!  I lost my sister to ovarian, my mother to breast, and I do have one BRCA1 mutation and a 13 biologic daughter and and 11 year old son.  I have been fighting this disease for almost 5 years and the only times I have thought about giving up is when my teenager acts like a teenager (who needs more of that abuse -- when you're going through chemo) --- You have to fight it -- there are so many things going on now with research and clinical trials that really look promising that you both have to just make sure you have doctors you have faith in, put up with all the discomfort of chemo, and count whatever you feel are blessings in your life --- I try every day to find at least one good thing that happened to make me feel like I'm here for a reason and it has really helped a lot.  Right now my chemo doesn't seem to be working, but I'm helping my friend whose mother just was diagnosed with a grapefruit sized cyst on her ovary, diabetes, and a hip problem all at the same time.  Every time she says thank you (and she's been arranging food deliveries from all my friends on and off for two years) I feel like that's why I'm still here.  Everytime my daughter kisses me (without torturing me to buy her something first) i know why all this is worth the fight.  I heard my little boy play his trumpet in a concert the other night and that did it for the day.  You can't just give up until the doctors start saying that you are running out of options.  And then you don't give up, you just find a way to make peace with yourself.
Stay strong -- for yourself and those that love and care about you