cjfrancis
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If you go to http://www.cancercompass.com and to their message board you will find a discussion about cholangiocarcinoma and Vietnam Veterans. Some way we need to find a way to band together to at the very least warn other vets who may still be diagnosed.
I am so happy to see others seeing what I have believed since my husband developed CC in March of 2007. He died January 18, 2008. When he became sick I googled the disease and found many articles about how CC developes and found information about these parasites. I put in a claim with VA and they said I didn’t have enough evidence to procede. I haven’t given up though and would love to be apart of making people aware of this. Gerry was in Vietnam in 1968 and 1969. He was near Saigon, ate fish and also remembered being sprayed with agent orange. CC is epidemic in Vietnam right now according to an article I read. I’ll try to find the article again and post its location later. Cathy
I know how you are feeling at this moment as I lost my husband in January 2008 and I’m truely sorry for your loss. My husband Gerry was also in Vietnam and I believe with all my heart that he also returned from Vietnam the parasites or because of Agent Orange or both. So if you make any headway with VA I’d sure be interested to know. Cathy
I emailed a letter to you Lainy. Thank you for sending the letters to Oprah. I have been looking for ways to vent my grief in positive ways and you have given my one way to do that. I appreciate that. The world should know what this disease does and just because it is rare as cancers go it is no less devastating to those of us who face it. Thank you again. Cathy
Juanita, My husband best friend passed on January 18, 2008. The pain for me is so fresh. Your story is exactly how I feel. We would have been married for 36 years on January 22. I can’t see myself a year from now still without him but I must. Thank you for being so honest about how you feel. It helps to know I’m not alone in my feelings.
Missing U, Thank you for the advise about focusing on my husband’s life and not of his leaving and trying to do things in honour of his life. I don’t want his life to be in vain. I want everyone to know how this dreaded disease doesn’t continue to control my husband’s and my life. I will grieve and be depressed for along time but I will not give in mentally to the disease that took my husband from me. I trust God will bring me thru this. CathyThank you Juanita I needed to hear what you had to say because the pain seems so unbearable right now and I don’t know if it’ll ever go away. I cling to the comfort of knowing that I will one day be with Gerry again and forever. Cathy
It is so comforting to know that you all truly know my pain because you know the painful devastation of this horrible disease first hand. My prayers are also with you. Cathy
Your story is the first one we read when I discovered this wonderful website. Your’s and Patty’s story, faith in the Lord and love for each other has carried us thru some pretty difficult times to face. My husband has Cholangiocarcinoma and Your’s and Patty’s valiant faith helps all of us to face what we must and to remember the promises of God that we will one day be reunited. Thank you for sharing with all of us your faith and love. Patty will always be close to our hearts. Cathy and Gerry
Thank you for the information and advise. We didn’t even apply for SSI just SSDI. We’ve been trying to save as much as possible anticipating the day he won’t be able to work. CT scan came out good yesterday! Calcium and platelets are low and he now has irregular heartbeat. I know I have to give him time to know when its the time when he feels he can’t work. Thank you again. Cathy
my husband filed for SSDI last week and two days later recieved a letter denying the claim because he’s still working and making too much. They said he could ask for an appeal within 60 days. Also, if he stops working within this time to let them know. They did not even look at the health problem when they saw he was working. Sure wish we would have known about applying when he was off work for surgery and Chemo. It’s just that when youre going thru all that, the last thing you want to think about is filing paperwork. Wish we had though.
My husband just applied for SSDI this week and since he works for the government he applied for disability retirement last week. It’s getting much harder for him to continue working and get feeling better or at least deal with symptoms away from a work environment. We previously were under the impression that he had to be not working for months before he could apply but they took his application. As soon as his disability retirement goes thru he won’t be working. He’s having blood work (CBC) done every week and had a CT scan Tuesday. Will see the oncologist Tuesday for latest results. He’s having much pain etc. Thanks for keeping us all informed Best wishes Jeff with your new treatments. Cathy
Thank you Jean–It’s sooo hard to watch the love of your life go thru this. It’s so frustrating because we go to the Drs. and they tell him he needs to keep working as long as he can. The VA is also sooo slow to make decisions. We went to our state representative here in TX to ask him to see where the VA is on his claim. I don’t know what we’d do if we didn’t have family support. However, they don’t have the perspective and objectivity you all have simply because we face the same beast in the storm. Thank you for that!! Hope we can be of help to you thru our experiences as well. Cathy
Gerry has been recieving 20% disability for athsma and PTSD from VA and has applied for more due to the Cholangiocarcinoma. We’ve been waiting for the VA to process his claim so we have a bit more money to make it thru the waiting period for disability when he’s not working. He works for the government and can file for disability retirement thru his employer. He recieved paperwork to do this but don’t know if it would be better to do this or just file SSDI. Disability retirement would ensure I keep my health insurance. We cannot recieve all three benefits but understand we have to file for SS in order to file for disability retirement. It’s all so confusing and when Gerry has to do all this on top of working and being sick. Well, it’s hard. Thank you both for your advise and I will pass it on to Gerry. I think when he stop working he’ll maybe be able to feel better. He has been such a wonderful provider for our 36 years of marriage and I know it’s hard for him to not be able to work as hard as he always has. I told him he deserves to be able to do the things he wants while he can.
We saw Gerry’s new oncologist today. He is monitoring white&red blood cells and platelets every two weeks. Gerry has had many bouts of pain, fever, night sweats, naseau and bile in urine since his resection back in April. Since only liver function tests, platelets and lymphocytes are abnormal the Dr. feels he’s only having these problems because of chemo/radiation and his slowness in healing. His chemo/radiation ended in early August and his platelets were at 126 and went back up to 196. I’m not sure if I believe the Dr.’s theory because he’s not having good times between the bad anymore. He’s constantly very fatiqued and having to take strong meds for the pain every 6 hours. Am I just being protective? Does it take this long to heal? At least this Dr. is monitoring the situation and Gerry has another CT scheduled for Dec. 3. Gerry is also working(light duty) fulltime but doesn’t make it thru a full week and then sleeps all weekend. His boss is very understanding so we’re grateful for that. Work is good for Gerry emotionally but I’m concerned this is too much for him physically. When do you know it’s better not to work? Thanks for being there!! Cathy
