MY JOURNEY

I was dx. with ovca on Nov. 5th 2004. My journey started actually started much earlier like a lot of us.  I was going to the Dr. and kept getting the wrong dx.I never had any pains in my ovary area,so I never went to a GYN.  The pains were more like the kind of pain you get when you have to have a bowel movement or have alot of gas.  They were also in my lower back,but in the muscle not in the spine. Finally my PCP made a appt for me to see a gastro Dr. the soonest was 3 weeks away.  My friends at work and home kept telling me I needed to go to the ER.....I was in so much pain,looking very pale,very very bloated.  Everyone kept telling me I was losing weight,but the scale never went down(in hindsight I was losing weight,but the fluid in my belly kept the scale from going down)Finally I went to the ER.  The first thing the ER DR did was tap on my belly,he told me I was filled with fluid.  he wanted my PCP's number,he called him and chewed him a new one,for allowing me out of his office in my condition.  I was admitted and scheduled for a paracentesis the next day.  At this point the hospital is thinking cirrhosis of the liver. The next day they drained 1900cc off me.  I felt really good,but still in alot of pain.  Later on that day a new type of Dr. was coming to see me "hematologist" and I heard words like "suspicious cells"...but none of that sank in at first,until I heard the words used over and over again.  A CT scan was ordered....I was told there was a mass,a huge mass 26x17x18....then came the ca-125 draw...when I asked the guy pulling the blood what each test was for,was when I heard the word "ovarian cancer".  I was shocked..I was numb..and very scared!!!  MY PCP came in later that day and told me I was going home,he gave me the news,told me it was ovca and there was nothing more the hospital could do,I needed to see a gyn/onc asap.  I did see him later on that week,and 1 week later I had the first step completed ...the debulking surgery.  I came out with a colostomy bag, and a central line for TPN because I was so mal norished. I stayed in the hospital for 7 days..and the pants I wore in that were so tight were now swimming on me!!!.   I started carbo/taxol 2 weeks later.  I was told the colostomy bag would be permanent...but as the swelling went down and after the 4th chemo,my Onc told me that he thought he could reverse the colostomy.  So after I finished all 6 cycles,my ca-125 was 12 and the CT scan was clear I scheduled a colsotomy reversal/second look surgery in June 2005.  I woke up from this surgery and was soooo happy the bag was gone..I really hated the colostomy bag. However my happiness was short lived. My Onc came in and told me although the surgery went very well,I still had visible cancer...and would be starting another chemo after I recovered from the surgery and he got the pathology report back on the 15 biopsies.  The path report came back, and all biopsies and lymph nodes were positive for cancer.  My Onc told me that what this all meant was I was going to be starting Doxil for 6 cycles and most importantly "cure was off the table for me"  I was so in shock, that I never asked him what that meant..but now I do.  I made it through the Doxil pretty easily,.left my worthless husband (another story) and moved about 500 miles away to Pensacola,FL.  I moved in with my sister.  My Onc in Clearwater recommended my new gyn/onc who I still see to this day.  I had 13 months of remission before my 1st recurrence. It actually took 8 months of rising ca-125 numbers before I had a positive ct scan.  On Feb 07 I started Gemzar.  I was breezing through Gemzar,my numbers were normal...and I felt pretty good,just had flu-like symptoms for a few days. Around my 5th cycle of Gemzar I started to put on weight,I was putting on 2 lbs a week.  I kept mentioning that to my chemo nurses and Onc,but I was told it was normal.  Then I started to have terrible heartburn, and was having a hard time breathing.  My Onc referred me to a Internist....I saw him about 2 days later,my weight was now up to an all time high of 152,my b/p was 204/119.  The Dr would not allow me to leave until he got the b/p down.  I left his office with a few RX's for lasix and B/p meds and a stat blood order.  The Dr. then called me back in 4 hours and told me to double my dose of lasix,he told me the blood work showed I was going into Congestive Heart Failure!!!! I was scared to death...but the lasix worked I lost 10 lbs in 4 days..the heartburn was under control and the b/p was going down.  I was also referred to a cardiac specialist. @ weeks after all this and more tests from the Cardiac Dr. I was told me heart had no damage done from the CHF...and that all that I went through was a combination of side effects from the chemo and steroids.  he explained to me that they sort of had a domino effect on me..one side effect caused on thing ,then another side effect casued another thing ..etc..till I had CHF.  There would be no more steroids with my chemos.This was all in July 2007.  It took most of what was left of the summer to recover and have mt blood work come down into the normal zone.  As a matter of fact all the meds I was on worked so well..that now I had another problem.....my b/p was 84/48.  I got that under control..but then my ca-125 numbers began to rise..and I was having horrible pains in my tummy area.  MY onc thought I might be having small partial bowel obstructions.  He had a CT scan done..it was inconclusive as there was too much fluid in my belly,  the PET scan showed several areas that lit up,but only marginally.  My Onc scheduled a paracentesis.  He said he didn't see alot when he looked at me,and wasn't sure any fluid would come out...but it did ....850cc....The removal of this fluid stopped the stomach pain...however with positive CT and PET scan.and the paracentesis fluid came back positive for cells I started on chemo again  Dec 27th 2007.  This time I was on Topotecan, with no sterods.  I did really well on this chemo.  I just completed it June 2,2008.  I feel pretty good,everyday I feel alitle better. and stronger.  I have looked into working back out again, and I live on the water,and have yet to swim in the ocean..so these are a few of my short term goals I have set for myself.  If I continue to feel good I want to start looking for part time work.  It will be hard as the masses were so large inside me they crushed alot of nerves..so I have chronic back pain and am on some heavy duty pain control.....we'll see how it goes...right now I'm just happy to be feeling so good~~~~Joanne