My Story

[BerthaC]

Hi,
I have been around for a while but never posted much. I am almost 5 years out from my diagnosis and would like to share my story with everyone.

5 years & 8 months ago I began a journey that I wish no one else will ever have to make. I began having problems with vague abdominal & pelvic pain. I went to my PCP & was told I was too fat & needed to lose weight. I threw the diet pills away & started a 9 month search for what was wrong with me because I knew in my heart something wasn't right. I was told I had IBS with constipation, a nervous stomach and chronic constipation. This whole time I had developed abdominal swelling, severe back pain, continued pelvic & abdominal pain, bowel problems, anorexia (if I ate a teaspoon of soup I would immediately vomit), pain in the upper thigh area and finally severe dyspnea. This whole time I was being dismissed as a drug seeker (so not true), a nurse that complains about anything or an "oh no here she comes again" patient! Finally August 31, 2003 I went to the ER with severe dyspnea & back pain. They made me wait 1 hr to be seen. Finally an intern came in and said they were going to do a flat plate of my abdomen. It showed I was full of BM. My electrolytes were very abnormal so they started an IV and gave me 1 L of fluid. They took the IV catheter out & sent me home with Mag Citrate for chronic constipation. I took both bottles, one on Monday & the next on Tuesday. Wednesday I went to another ER with increased abdominal swelling, sob & back pain. They took a flat plate and I was told you need to take these enemas home & give your self 1 tomorrow & 1 Friday. You have chronic constipation. I did as I was told and used the enemas. This entire time I was very close to getting fired from the company I worked for because of calling off so much. 5 days later my daughter had to call the medics because I felt I was dying. I could not breath and was scared to death. When I was taken into the ER the doctor came over and yelled at me for coming in an ambulance. He said people that come in an ambulance are priority and he was sure I could have waited. He asked me why I came in the ambulance and I told him because I can't breath and I think I am dying. At that point I was so very angry I looked at him and said "I have done everything every doctor has told me to do for the last 9 months and have gotten much worse. Now I am telling you that I will NOT leave this ER until you find out what is wrong with me, do a CT Scan and find out what is happening to me. He said to me "I am the doctor and I will do what I feel is necessary". That doctor let me sit in the ER for 12 hours and finally said "you're really not leaving are you?" I told him I would leave when he gave me a definite diagnosis. He reluctantly sent me for an abdominal & pelvic CT Scan. The technician was very nice. He told me to take a deep breath. I looked at him and started to cry because I couldn't take a deep breath. I cried because I was so scared of what was to be found. Again he asked me to take a deep breath and I said to him, please I am doing my best but I can't. He said it was ok we can do it without that deep breath. I was sent back to a holding room with 1 other patient and her family. 30 minutes later a nurse came in and took the patient and her family out and I thought to myself uh oh this can't be good. That same doctor came into the room and said to me that he had bad news for me. He said you have metastatic ovarian cancer. I remember saying to him that he had just given me my death sentence. To this day I will never forget what he said to me. He looked at me with the deepest steel blue eyes and said "Don't ever say that again. There is never a good time to have ovarian cancer but now is the best time because there are so many different chemo's & other treatment options. He then sent me home in a courtesy van. The next day I called my boss and told her I had good news and bad news, the good news is they finally know what is wrong with me and the bad news it is stage 3 ovarian cancer. I was wracking my brain trying to think of a gyne/oncologist when I remembered Dr. Beverly Jaramillo, she worked at AGH. I did not know her but knew she did a lot of debulking surgeries and was very well known and many doctors referred patients to her. I then called my PCP to tell him and he said I want you to go to a different gyne/oncologist and I told him "why would I see who you want me to when for 9 months you never tried to find out what was wrong with me. No I will see the gyne/oncologist that I know." I then called Dr Jaramillo's office and spoke to the nurse and explained to her what was found. She immediately gave me an appointment and said don't worry Dr. J will take good care of you. I hung up the phone and for the first time in 9 months I felt a wave of peace come over me and I knew I had just found the doctor that will help me. I immediately told a few friends and before I knew it I was on prayer lists all over the world. I never made it to her office because I ended up in the ER again with severe dyspnea. I had my CT Scan results with me and the ER doctor looked at them and asked who my doctor was. I told him I never made it to the appointment but wanted Dr J. They called her and she admitted me immediately not even having seen me yet. The next day this very tiny lady in scrubs bounced into my room and plopped down on my bed. I looked at her and asked who she was. She started laughing at me and said oh I'm your doctor. They took me to the x-ray department and drained 10 liters of ascites fluid from me and it was like a miracle. I was able to breath. She operated on me 2 days later, Sept 19, 2003 but before we went into surgery I made her promise me she would not open me up and close me. She looked at me and said "I wouldn't be a very good surgeon if I did that, now would I?" Well she found the primary site as left ovary with mets to the right ovary, the uterus, a 17cm omentum tumor, seeding on my rectum and diaphragm. I was staged officially at 3C, very extensive disease. The next day she came to ICU and said to me "women with as much ascites as you had always do well" I had a port placed 1 week later and 2 weeks later I started 9 months of IV chemo, taxotere/carbo and then 13 months of an old oral chemo, hexalen, that not many used because it was too expensive. My work did pay for it and then G.H.P. paid for it when I started a job here. September is Ovarian Cancer Awareness month and this coming Sept 19 I will be 5 years out from my diagnosis. I have been blessed and so far I have not had a recurrence. I pray every night asking God to continue to help me with this fight, I thank him for being there for me and to have guided me to Dr. J.

I try to make every woman and man (I explain that if there is any women in their life it could happen to them) aware that if they feel something is wrong they need to insist or demand that tests be done and a diagnosis be made. Had I finally not done that I feel I would not be here today to tell you my story.

Thank you for being here for me also.
Bertha
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dx OvCa 3C 9/19/03, 9 cycles of taxotere & carbo, 12 cycles of Hexalen as maintenance.

[dmlt]

From your story, you sound like a very determined lady. I congratulate you on this and your five years (soon to be celebrated).

I pray that I will be able to remain determined in my own battle with ovarian cancer.

Yours truly,

dmlt

[daeckardt]

Bertha,
I think you got very lucky to find out when you did. The fact that you kept pushing for an answer probably saved your life. My surgery was about 4 days after yours (I think it was Sept 23,2003 or thereabouts) so I am also five years out. Fortunately, I was stage 1 sto haven't had any recurrences, but I did have to get a hernia repaired last month and they cut me on the same incision. I am STILL recovering from that. It would be nice if doctors would REALLY listen to what patients tell them instead of just making assumptions based on vague symptoms. We know our bodies and if something is not right we should be able to find out why. Let's celebrate our five year survival together!!!!
Debbie Eckardt

[margie lou]

Bertha, your story sounds so like mine. Trips to the ER, ct's that do not get close attention, many days waiting for results of tests, mis-diagnosed as gall bladder problem. The surgon they sent me to did not think it was gall bladder, but said he would take it out if I wanted. He also said I had an enlarged overy, which the PCP internist that I was seeing did not mention. I went to a wonderful GYN dr. He sent me for a trans vaginal ultra sound and took blood for a ca125 test. Both tests showed a considerable tumor. Went to a GYN ONC doctor, had surgery and was told ovarian ca, stage IIIC. Did the chemo thing for six months, went into remission. 3 or 4 months later, more pain, another surgery removing 9 ft of intestins and told there was a tumor attached to my bowel that they could not take out. I did not want to do chemo again, but my dr. said I qualified for a clinical trial if I would do chemo again. So I did. The trial med is called MORAB and my ca125 is 12 now and I feel great. World wide prayers for me also. I go once a week for treatment with IV of MORAB. This has all taken about 3 years, but I believe that our Father God has healed me. The tumor has been shrinking as shown by CT done every 9 weeks as part of the study. Thank you for your story. It encouraged me to tell mine. Margie
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Life is Beautiful, God is in Charge, and you never know what will happen next !