My new web site developers are trying to get me more “out there” in the internet….social networking sites etc. The siteis still very much under construction, have patience!
They also offer a blog network attached to my site for appendix cancer patients so that we can more easily communicate with each other. New to me, JCow. I checked it for the heck of it today, and several people have joined our blog network!!! Surprised me, and made me feel great. Those diagnosed with appendix cancer are supporting others diagnosed with appendix cancer via the blog network! We all need that…communicating with others who have been there and done that, walked in our shoes. People who can support us in ways those who don’t have our diagnosis can’t. I have some who are not candidates for surgery who are looking for others like them who they can communicate with….maybe they can join the blog network? It’s a bit like a private facebook community.
Also, for fun, I’m going to paste a link here. I grew up in a traditional church and really didn’t like it…the solumness, the formality, the liturgy, the dreary hymns. I quit going to church pretty much when I moved out at 17. Then I discovered the more contemporary churches about 10 years ago…and loved them! I belong to one now that is 1000 members strong, is upbeat (jeans are the normal attire), we have a great band (complete with drums and electric guitars), and informal services. We have 5 Christmas Eve services, one tonight (good for me as we spend Christmas Eve in Illinois with my family). But this video is a rocked out rendition of one of my favorite carols, Drummer Boy, from last year’s Christmas Eve service that I LOVED! Maybe some of you will enjoy it?
Ham causes cancer…and so does eggnog!
I bought some eggnog the other day….and my kids protested. We don’t DO eggnog anymore! Eggnog kind of signifies my cancer diagnosis to them. Before I was diagnosed,I bought some eggnog. Shortly after I drank a glass I had severe stomach cramps. I had never in my life had a stomach ache or stomach cramps, and decided the eggnog was bad. I asked if anyone else had had any, and grateful that they hadn’t, I disposed of it. I had several more episodes of severe abdominal pain after that which in the end led to my cancer diagnosis. But to them, eggnog and cancer are related, even to this day! One of the survivors who wrote a story for my site had the same experience after eating ham, he also misdiagnosed it as food poisoning. I wonder if others have similar stories? At least now I get all of the eggnog to myself!
I was recently interviewed for my newspaper,they are doing a story on my non-profit and appendiceal cancer (Yeah! We need more awareness!). They asked a lot of questions about my cancer. It made me remember how devastated my youngest daughter was with my diagnosis. Sure that cancer was a death sentence, she was afraid I would die. Once she knew I had cancer (she was ten), she went to school and told all of her friends that her mom had cancer. That day she came home ecstatic. I asked her why. She told me of all of her friends who had lost relatives to colon, breast, brain and ovarian cancer. But she said “Mom, no one knew ANYONE who ever died of appendix cancer!!”. I decided that maybe there was at least one good thing about having a rare cancer!
If I don’t post again before the holiday, I want to wish everyone a VERY Merry Christmas!!
If anyone has recently sent me an email I did not respond to, please resend! I think I got all of them but may have missed one or two with the host change-over for my web site. They did add a new contact feature to my site so email is sent to me via a form on the site, so hopefully I won’t get as much spam! I got tons when my email address was on the site. Filling out the form is the same as sending me an email, just more secure!
I received an email from Dr.Sardi in regards to the fact that CIGNA insurance no longer considers cytoreduction surgery and HIPEC for PMP (jelly belly) experimental and will pay for the procedure now. It is a victory! They had previously refused to cover the procedure as they deemed it experimental.
I was a bit disappointed, though, that they will only cover it for PMP (mucinous tumors), though CRS/HIPEC are used with good results for several other peritoneal surface malignancies (cancers that have spread into the abdomen), including primary peritoneal, ovarian, gastric and colon cancers. It will not cover appendix cancer tumors that are not mucous producing. Part of why they will not cover these procedures was stated on their site. In referring to other clinical trials, they stated:
” It was noted that patient selection criteria differed between centers and individual trials. Also each treatment center prescribed different chemotherapy regimens and varied in the amount of detail reported.”
Again, we need all of the surgeons to be on the same page, to agree on a standardized treatment protocols and to use the same techniques and procedures. Insurance companies want one standard of care to be proven effective in trials before they will provide coverage. That is the purpose of the American Society of Peritoneal Surface Malignancies, to standardize CRS and HIPEC.
For what it’s worth, it would probably be a good thing if you are looking for a surgeon to choose one that belongs to this organization, many of the prominent HIPEC surgeons are members. I have the list of members for the ASPSM here. The list is international, I have my own list and I need to edit it to separate US vs. international members, but for now this is the list on the ASPSM site (note though I am not a surgeon, I am listed as a member! And proud of that! :).
Loved what my site designer did! At the top of my web site there is now an “Old Site Archive” button, so my old website is still available with unchanged content and all links working until the new site is completed. How cool is that!
Loved his “hard hat and goggles” note too 🙂
He is also going to set up Facebook and Twitter accounts for the organization, and also a blogging network on the web site to help patients find and communicate with each other. Pretty neat! I’ve had several patients who want to connect to others with our diagnosis, so the social networking sites may help with that.
If you have any ideas/suggestions for the website, anything you wish it had or would find helpful, let me know! Now’s the time!