Randi, brief association with the site and back for support and info to help me through this illness. I have no words to express the joy I feel about the news of life and journey towards wellness and a healthy life. I will keep you in my prayers for continued great news. Wisdom
Laurie, This illness is very tough and the emotional side as you and your husband have already experienced is all over the map. Since my original surgery 6/2009, 3 1/2 years what has helped is one mindfully and a moment at a time. Living each moment as a gift, I acknowledge this is time I would never have had. I relish in seeing the sky in the morning when I drive to work, listening to music, and working with kids. On the tough days, I cry and reach out to those available and we laugh and cry together. I feel less alone and scared. Take time for yourself and know you are not alone accept strength from you faith. and spend time together. I occasionally drink socially have not seen a difference, not sure what the standard is for CC and alcohol. accept peace from a moment that is special to you, blessings Wisdom
Thank you for the words of hope and encouragement. I live in another state and was lucky enough to go to UCFS where my resection was done, 16 hours of surgery. For a long time I emailed them and went back to see my team, they are great down there. I have returned home and the follow-up is really poor. Good to know others have had option like the B12, and need for silence at work. I have new insurance and will look to see if another option is available re changing MD when INS. chgs next week. I have asked for time off and was told no coverage. I decided to ask what is available and to receive that time for two weeks. So my reprieve is coming up 1/7/13 for two weeks. I also appreciate knowing another put on the "good face." I'm sad that your sister had to do this. Happy New Year to all of you and your families, Wisdom
I haven't posted in some time. My handed down computer crashed and now I have another. It was suggested that I start in the intro section. I'm not real computer literate. I hope this goes where it needs to. So my story. I was diagnosed in February 09' and had my resection in June. After discharge from UCSF I was referred to an oncologist who recommended Chemo as a cursory measure due to CA-19-9 was normal, and all the signs pointed to "we got it all." I had a new set of labs in September 09' and levels were low so I could not start the Chemo, six weeks went by and I was ready to go, I was able to finish two rounds and then labs dropped. This sequence continued up to December. The Oncologist didn't know what else to do for me and referred me back to the surgeon @ UCSF. Several test and appointments later I arrive at, ... oh god you have developed Ovarian Cancer as well. Surgery in March and more test, including looking for the best agent only to find out not Ovarian and grapefruit size cholangio. Back to the team in the city, and a look at other options. My oncologist asked what is my goal. I indicated to heal and be well, if this isn't an option, to quality of life, as I'm living while dying. I didn't want to have low labs, and have in and out of the hospital as I had in the past. My doctor asked if I would want to be notified if a trial came up that I would qualify. this did not pan out and so... No treatment as my Team doesn't know what else to offer. I have done scans and labs, but as of recently only labs do to building up a reaction to the scan drugs. last labs low sodium, white cells, platelets, and total protein Ca19-9 580. I feel tired and have moments of dizziness. Abdomen distended slightly - no fluid. Md no longer following me as I'm not being treated....it is strange. I'm struggling with mood and feel distance from people around me. My job doesn't know as they are not supportive in general. I have some friend there and they are very supportive, yet they struggle to understand. needing to reach out to others. Thanks for reading sorry for the length. Glad to be back on, Wisdom Ultimately this wasn't
I did first round of chemo with gemzar but could not continue after six months due to low labs. Now new tumor sites...surgery and now my dr. wants me to try again and use xeloda. anyone use this agent? How is it going? wisdom
Hi everyon, weather in Reno NV, sunny, not to warm clear blue sky, took a deep breath and smiled. looking forward to 60 degree over night. and sweet dreams.....to al Wisdom
Hi I'm Wisdom. I was diagnosed last march "09." I had resection surgery in June and my CA19-9 was inthe normal range. I attempted to do Chemo, but my labs tanked to ultimately the doctor suggested I stop. No new treatment since December. I have been watching my CA-19-9 and it continues to climb, now 333. no specific symptoms, very tired. I'm scared and feel pretty much alone. It's good to find the site, sad to know either you or a family is ill with this disease. Glad to know I can come to site and chat. W.