Jade's Journey:

first indication that something was amiss.

Hysterectomy became complex with bowel resectioning and removal of omentum/debulking... have to take cholestyramine for the rest of my life to compensate for bowel resectioning and prevent constant stream of diarrhea. I also frequently need a binder to help support abdomen and reduce incidence of pain... riding in a car has become the most painful thing I suffer on a regular basis ( just getting to treatments... my daughter drives me the hour plus each way and I am getting better as the CA125 comes down). Driving (now that it is possible) is better as the support of the steering wheel helps divert the shock to the abdomen.

20 days in hospitals and 6 weeks in rehab center while getting chemo and TPN with negative reaction to opiates....

Hair loss and low potassium as well as extreme swelling in legs (reduced as chemo progressed)

got CA125 down to 34.6 and was taken off chemo on April 24th, CA 125 shot up to 37, then 60 and then 600. Pain increased in abdomen and chest (fluid around lungs)

projectile vomiting in three sessions after taxol injection on Thursday... all night and into Friday... missed tablets on Friday and called Dr for advice... I was admitted to hospital for several days... seems the cholestyramine I have to take after the bowel resectioning caused a blockage that finally dissolved. I started taking the cholestyramine in smaller doses throughout the day for awhile (rather than the full scoop am and pm). I have been okay since then (mid-August). The fluid in my right lung has been a constant problem though with shortening my breath and causing my heart to struggle just climbing the stairs or carrying anything... too little for thoracentesis again (had that in July because fluid pressure was pushing my heart into my left lung and pain was unbearable). A bit of a recap: I have been diagnosed with stage 4B epithelial ovarian cancer and am interested in finding people who have survived beyond the two year mark that the ACS projects for only 18%. The types of chemo are important to me as the platinum/taxol combination that I was treated with following surgery was great for the CA125 numbers but caused me to have many lapses in treatments due to anemia, blood transfusions, and other less than desirable side effects. Unfortunately I went home to a rural area and continued the chemo regimen without benefit of an informed/experienced oncologist and was kind of left in limbo after the count got down to 34... the cancer resurged and the count went from 60 to 600 in 4 weeks. I immediately came back to my original surgeon in Albany and entered a clinical trial (of which I am in the third cycle). The CA125 numbers are coming down slowly and my last was 343. This has been as close to XXX as I choose to get. I am allergic to all opiates and therefore pain is a depressant at times that curbs my will to live at all... some days are pretty good though and those and the prayers of friends and family carry me forward.

The clinical trial was a bust, CA125 shot up to over 2000 after 4 cycles and now I think it is time to call it quits. The chance of a third round of chemo having any effect is only 10% and the discomfort it would bring is too much for me... I am tired and having so much difficulty just breathing, it hardly seems worth getting up anymore. I have home oxygen and a hospital bed to help me sleep but it hurts to cough or even breathe deeply. I have no energy and not much appetite. I am supposed to get permanent drains put in my abdomen and chest tomorrow so that I do not have to have the ascites drained at the hospital every week. There just seems little else to do but close the book; the story is almost over.