My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Thursday, December 23, 2010

Website blogs

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?

Tuesday, December 21, 2010

Just fun stories!

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!!

Saturday, December 18, 2010

Email

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!

Monday, December 13, 2010

CIGNA Covers HIPEC!

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! :).

Sunday, December 5, 2010

Web Site Update

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!

Saturday, December 4, 2010

Brave New World!

Well, wish me luck!  In a few days I take my first final exam in 17 years!  I am in a graduate program at Loyola University in Chicago.  I last graduated from college with my second degree in 1993.  I am in a graduate Oncology Certificate program (learning about cancer genomics right now).  I will continue working on that degree and in January will also start working on a Master's Degree as a Clinical Nurse Specialist.  The really good part of that, though, is that I can now look to a future beyond a few years, set goals for a future, plan on being around for awhile-  things I couldn't do for a long time after my cancer diagnosis.  After my diagnosis and poor outcome predictions, I never planned my life beyond my next CT scan for may years. I couldn't invest in my future.  For a long time, I couldn't even say the words "next year".  I lived only one day at a time....and  in reality that is a very difficult way to live.  I don't know if others with a cancer diagnosis share those feeling?  Maybe it was just me?   I feel very blessed to be over that hump, though.  I still know none of us are promised tomorrow, but I am willing to take a chance on tomorrow regardless. 

I also hired someone to upgrade the website for my non-profit, the Appendix Cancer Connection,.. So if you look at in now, it's under construction.  I built that website with very little knowledge of website design (I purchased used software from Ebay  and took an 8 hour beginner class in creating  websites through a local high school adult ed class in 2005). I wanted to be able to do more with the site and to make nicer and more user-friendly with more features, but that was beyond me.   They are also creating a Facebook page etc. for the organization and helping me with a lot of other things.  So, hopefully the site will be fully functional before too long!  I'm also hoping to soon develop educational brochures about many of the issues some of us deal with after surgery: TPN, ostomies, PEG tubes etc. that will be available by mail or online.  I want to also create brochures about appendix cancer that could be sent to doctor's offices, as I think most are unfamiliar with the disease and it's treatment.