I'm up at this late hour re-living my original dx/surgery. I thought maybe we could all share our stories on when/how we were originally diagnosed and what convinced us something was wrong. I'm not sure what the point of this post is, I guess it could be to warn others on the symptoms they should be aware of when thinking the frightening thought they might be dealing with ovarian cancer. Maybe it is to answer that ever-so-surfacing question that women ask, "These are my symptoms, could I have ovarian cancer?" Maybe it's just because I have been crying for the last hour about how this all came about for me, and I think writing about it would help. I could just write in my "journal" but I thought what the heck, maybe a lot of women will benefit from sharing their original dx stories.
On July 4th, 2007 I went to the ER because I had been experiencing pain in my stomach for the last week, and I looked to be about 7 months pregnant. I knew in the back of my head that something was up, but cancer was never anywhere near my thoughts being that I was only 27 years old with no family history of this disease. I had started to gain unexplained weight rapidly in a matter of 3 months, and the fatigue had us all confused. I had just opened a hair salon in 2006, so we all thought this had to explain my weight gain (stress) and fatigue. I had normal pap smears for years and was always on top of my physicals and yearly exams; ALTHOUGH I do want to make it very clear that a pap smear does not detect ovarian cancer. Back to the 4th of July, an ultra sound was done - I was told to go see my gyn because there looked to be some cysts. I went to my gyn the next day only to have her tell me she did not like the report and she wanted me to have another ultra sound because my uterus was not detected in this one. NOT DETECTED?!? I should have known this could be bad, but my gyn and I both thought it was just an inexperienced tech that performed the ultra sound. On July 9th I went back in for the 2nd ultra sound with my gyn's office. The reason you could not see my uterus was because there was a 7 1/2in mass covering it from one of my ovaries. The ultra sound also detected massive fluid from my pelvis all the way up into my chest. Chills went up and down my spine when my gyn's ultra sound tech decided to pull my gyn from surgery to come and talk to me. She told me I would need surgery and to see a gyn/onc IN CASE it was cancer. The weird thing was the ONLY time I cried while in my gyn's office, was when the tech said, 'oh honey, there is massive fluid all around your lungs, chest and stomach, you must be in pain!' YA THINK?!?!? On July 10th, we went to see a gyn/onc to discuss the surgery. My mom said she nearly fainted when she walked into his office and it read, "Rocky Mountain CANCER Center." Keep in mind, I am 27 ys old! Before he had come in to talk to me, his assistant told me he did not have room for surgery until at least another week. When my gyn/onc took one look at me and my scans, he completely changed his schedule the next day so that I could get in for an emergency surgery due to the fluid buildup. On July 11th I was scheduled for an "exploratory" surgery by the gyn/onc. Before the surgery, we were told it would be very unusual for me to have cancer and that he would be very conservative when deciding what to remove so that I would still have the option to have kids. 4 1/2 hours later I awoke in the recovery room to find out that I did have cancer, stage 3C, and that I underwent a complete hysterectomy, a bowel re-section, and chemo was knocking on my door. Good morning to you too, doc! Unfortunately the cancer had spread to my stomach lining and lymph nodes causing my gyn/onc to put an IP port in my stomach for chemo. A week after I was released, I started to have high fevers and bad night sweats. I went to see my gyn/onc and he ordered a CAT scan. The scan revealed an abscess in my lower pelvic area that needed to be drained. I had to be re-admitted into the hospital for another 3 days to surgically put a drain in my bottom. I walked around with a bag hanging off my butt draining a liquid I can only say resembled dirty dishwasher fluid. The drain/bag was left in for 2 weeks! After my CAT scan came back clean, the bag was removed. Exactly one week later the high fevers started again. I had another CAT scan which revealed ANOTHER abscess and a hole in my bowel which was causing all these infections. As if the drain put back in my bottom wasn't enough, I had to have a colostomy as well. The surgery was a duo - 1) colostomy 2) port in my chest for IV chemo. I was then put on heavy IV antibiotics 5x a day through my chest port. Two days after the surgery I was sent down to imaging (still in hospital) for another CAT scan to make sure I was draining the abscess properly. The tech made a HUGE mistake of hooking my chest port to the machine for the iodine contrast. As soon as he hit start on that puppy I felt a sudden fire in my chest. One hour later it was time for my dose of antibiotics. Once it started to drip, the fire returned. I SCREAMED for them to stop the machine because I felt like I was on fire. I was then sent back to my room with a failed attempt at a CAT scan due to the fire in my chest. I told my nurse what happened with the CAT scan tech and she flipped. Apparently, you are NOT to use a chest port for iodine contrast unless you are doing it by hand because the machine's pressure is too strong - it blew a hole in my port. I had to have another surgery to take it out and put a new one in the NEXT DAY. I continued to take IV antibiotics for a full 2 weeks 5x a day thanks to my Dad who was in charge of getting each bag ready and hooking my port up to them. I started IV chemo in Aug 2007, and started the IP chemo Nov 2007. I completed 6 rounds of IV Taxol/Carbo and 3 rounds of IP Taxol/Cisplat. I have yet to receive remission. I am now on Avastin/Doxil every other week due to cancer spread to my liver. I am now 28 years old, engaged to be married in 2009, and you bet your bottom I will be healthy at my wedding and even healthier 20 years from now. Tears are streaming down my face as I type this....
Oh my goodness. That is so much to go through in such a short time and at your age. My tears are flowing for you too. I was fortunate that I ended up benign but I have met so many wonderful women who are suffering from this disease and have learned so much from them all here on this forum. I feel a roar building in my chest that has to come out at the unfairness and awfulness of this disease and the lack of discussion and attention it gets. It is those of us who aren't fighting in the trenches every day like you that need to take up the gauntlet and fight for the attention, the resources, and the funding to help women recognize the signs and for the medical and pharmaceutical communities to do more to find a cure.
I'm so glad you wrote your story. We need to educate people and patients need to be able to share as a way of dealing. I'm happy that you are here and will be for a long, long time and that this forum is here to help you and others. Let's make the world aware that September is Ovarian Cancer month.
You are the first "post" I read some months ago when I discovered this wonderful forum and you are the reason I am still here everytime I have 10 minutes to open internet.
I remember that I was desperate, sad, angry because Ov cancer happened to my mother.
Day by day, post by post I realized that you, and all other women gave me strength (is it correctly written? :-)) to go on, to discover new treatment and ask onc about every doubt I had.
As months ago I needed you to keep on going on, I am sure that next twenty years there will be so many women who will ask for your words, your help....and you haircut!!!!!
So.....stop your tears and think how precious you are!!!!!!
Oh Deandra, I knew some of your story already but reading this just broke my heart. I do hope that others post how they were diagnosed also, in the hopes that it even helps ONE woman to go see her doctor if she hasn't already. I know that all the help that you have given other women and the advice and support that they receive is invaluable. You are a strong, beautiful (inside and out) woman and I know you will be dancing at your wedding!! Hugs and prayers for you, Colleen
What a story!!! You have truly been through the ringer..Your inner strength is so amazing and I am glad to have met you. You keep up that good fight. They will find the right chemo and you will dance with NED before your wedding. ((((hugz)))~~~Joanne
First let me say, Deandra, that was such a horrible experience for you that words cannot describe how my heart hurts for you. My dtrs. (twins) just turned 29 .. so as a Mom and a woman, I am just in agony for you.
My story: Mammogram 9/05 found "fatty replaced lymph nodes" .. which sent me to by GYN and she had an ultrasound done. Nothing to worry about. However, at the same time, I was feeling bloated, burping, passing gas alot. I asked her to run a CA-125 (remember, I work for cancer MD's) and she said "no" ... tests are unreliable, yada yada. I was thinking I was just paranoid from reading all of the info on many of our patients so I let it go .. that was 10/06. The holidays came and went and I felt no better and clothes getting tighter. Saw the gastro guy in 3/06 and he gave me pills (?phasezyme?) for gas and sent me on my way. He did do an ultrasound of my gall bladder and nothing there. Finally had my yearly PCP appt. Walked in and told MD that I was miserable, clothes do not fit, pain in my abdomen .. "can't do the twist". She thought I may be gluten intolerant and asked me to change my diet and see. I said, I am not leaving without an CT of the chest, abdo & pelvis. Guess who was right. Since I work for cancer MD's, I had my test (Thursday) result faxed to the office and read the report before anyone else .. "suggesting ovarian cancer". I knew what it meant and had all 3 of my MD's in on the discussion. They all agreed that I needed GYN/ONC and I managed to get an appt for the following Monday. Next Monday, had surgery. The rest is history.
Deandra...this story couldn't have come at a better time for me. Since getting the recent news that my cancer had returned...that it had never really "gone away" in the first place, I too have reflected back to when I was first diagnosed, the emotional upheaval, and the physical pain that you just KNOW you'll never be able to endure. But, somehow we did endure and CONTINUE to endure...
I had vague symptoms also of nausea, abdominal bloating, not able to eat much, and a constant pain on my right side. After the whole rigamarole of the ultrasound fiascos (the tech said my right ovary was healthy and had a great blood supply...I didn't HAVE a right ovary), I requested a CT scan and there you have it! Stage 3C...left ovary.
I guess the "moral" to the story is, "Listen to your body." And keep asking questions until the answers, regardless of how tough they may be, are found.
Deandra...you continue to give strength, darlin'...thanks. And yes, sometimes we just HAVE to cry.
You are so amazing and so inspiring to all these women on here...You have touched so many lives with your story, your courage, your strength and all that you have to offer...i can not begin to tell you how you have touched my life..I have read your story over and over and am so speechless...All I can say is how this negative situation has brought such positiveness into your life...You can handle anything...you are a role model to all! Your story has brought more awareness to a terrible disease...By sharing your story you have made women more aware of being more "in tune" to their bodies...You are going to be a BEAUTIFUL BRIDE!!!! You deserve to have the wedding of a lifetime! You have shown me what really is important in life and you have taught me about so many different things...you are a shining star in my eyes and I love you so much. Crying,venting, reliving your experience is good....Look how far you have come and how much further you will be going!!! I will always be here for you....Love, Gia :0)
P.S. To all the other women on here suffering and fighting...one day at a time...even though I am not in your shoes...I feel for each and everyone for you..I will always continue to offer support,love and strength to all of you.
I am choked with tears and sadness. You are amazing Deandra, way too young to have gone thru so much, yet such a strong beautiful woman. I wish I had the strength to put my story out there, but just reading yours as left me a pile of mush, sadness, and anger, at what this disease does to all of us. I hope in time too have the strength to put myself out there the way you just did. Sorry if my holding back disappoints, but I am just at a loss at this time in my own journey. God Bless
Tears were streaming down your face as you typed this. Tears are streaming down mine as I read this. You are a strong and courageous woman. You have been through so much. You will beat this. I will, too. I will put my story up in the next day or two. Love, Marie
be with these women and their families now and send ur spirit to comfort and guide them ... be with them each and everyone and grant them ur peace, strength, hope, love and light, have them be aware of ur presence in them and around them and thru them ... continue to fill them with ur blessings to concentrated compressed and overflowing ... praise u lord for the ability for them to share, receive encouragement and prayer, and continue to let their light shine so brilliantly that all who see them or hear them count themselves as blessed ... i thank u father for allowing me to be blessed by the reading of the words of these women and their families and their guiding examples of strength beauty courage and grace ... i pray u keep the rest of the worldly evils away from them as they continue to battle and i pray dear father that u go before them and be a light on their path as u have promised
in the precious name of ur son
Tears too streamed down my face as I read your story. You are too young for all of this. We all are, no matter what our age. I do not even know what to say right now ecxept that I am sorry. Sorry that you have had to go through such a terrible thing at such a young age, sorry that any of us have had to go through such an experience in our lives, sorry that there are no better ways of detecting or treating this monster, soryy that we all have had to meet under such circumstances. But I am not sorry that I have met any of you. That is the one positive that I find behind all of this. If it were not for this monster I would never have met the "forever friends" that I have found here.
I agree with Chris. I am sorry any of us have to deal with such a monster. I am very thankful that I have come to know so many wonderful friends. Had it not been for the awful beast our paths could not have all crossed. How else could a granny in Peoria, IL have met people in the UK, Jordan, all over Canada, Australia, etc???? Marie
You are an amazing girl and far too young to be dealing with all this ****. What a terrible enduring time you have had dealing with all this and then having to deal with incompetent technicians, my heart sincerely goes out to you. Your positive attitude together with new treatments is gonna kick this disease in the butt. All the best for a wonderful bright future including your wedding to look forward too... Carolyn :)
Hi Deandra, I just wanted to tell you how sorry I am for all that you've been through. Being 28 is too young to have to go through this, or any woman for that matter. I hope you get through your treatments and have beautirful wedding and live happy.
All the best to you and your future husband.
I want to tell everyone how I got to meet you this past week. I was going to be in the town where you live, so I called your salon and got an appointment with you. (You did a wonderful job on my hair, by the way!) You're a wonderful woman, full of energy, and have a positive outlook. Delightfully sassy!!! You've been to hell and back, too.
And you're my role model.
I think most everyone knows my story, that I'm a triple survivor. They were *nothing* compared to what you and most of the other women on this forum have been through. I get courage from your, and others', inner strength.
There was cancer in my family--lots of it--so I always expected it. I can't imagine how women get through this as easily as you have when it's unexpected.
I think the world of all of you. You guys are amazing ladies!!!
I just read your story...I actually hurt for you. I dont know you, but I physically feel your pain. I thought my story was horrendous....but you have really been through the ringer. I'm sorry your crying, but you are certainly NOT crying alone.....and bet your *** you'll be telling this story in 20 years.....maybe 30!!! If you can endure what you've already endured.....you'll do it!!!
I'm going to post my story this evening. I think you're right, reading different stories can educate others in our situation.
Your courage in sharing your story with us is admirable. I think the 'beauty' of the human spirit is we all see our own stories as unique, but your story is truly unique. I feel such kinship with you as our stories are similar - and yet they aren't.
Know that you have helped many people with your story and I know what a cathartic experience that can be. I hope you will continue to share with us and encourage us to share with you.
I will post my story soon, I know it is important to share, but sometimes I just hate reliving it. Thanks for giving me a kick in the butt!
Thank you. I had many, many tears in my eyes after reading all the responses to my post. I really had no idea it would effect people the way it did. I hope more people will share their stories since it did REALLY help me even though it was hard to re-visit. Hopw you all are having a great week. Chemo tomorrow which would be why I am up again LATE!!!! Everyday before chemo I get nerves. Doxil and Avastin tomorrow. YUCK. Much love, D
Sure can relate to why you are still up the night before chemo. Use to do the same thing and then get angry with myself for not getting some sleep. But I found it as better this way cause that next day I slept through most of chemo and even managed to catch up on my sleep!!!
I will be sending you some positive energy to help you with your cocktail tomorrow.
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