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, August 26, 2010

How Cool is That!!!!

I'm really not great at fundraising...I need to get over that as I have a non-profit now that I need to learn to raise funds for. Most of my life I have volunteered my time...working soup kitchens, delivering meals to the homebound and handicapped, providing musical entertainment to the lonely. When I get calls asking me to donate money, I always say "I donate my time but not my money, do you need my time?". Those calls usually end quickly.

But anyway, I went ahead and created a donation page under the name of my non-profit to raise funds for the Heat if To Beat It walk I will attend in Maryland in September. It's a walk to help raise awareness and research funds for our cancers. I never checked the page as I expected no response, but figured I would donate to my own Heat It to Beat it site (at least $100 as those who raise $100 get a T-shirt to commemorate the event. I'd like the T-shirt since I'll be traveling out there from Chicago and am kind of sentimental about the event. I really want the T-Shirt!).

For the heck of it I checked my "Heat it to Beat it" site, and Oh My Gosh!!, I have two donations totalling $250!!!! I was blown away!!! And those who donated left comments that made me feel SO good! "Thanks for all of your work on the website. It has helped my family greatly." and "2 year survivor signet ring appendix cancer. Go Carolyn!". Thank you so much Ginger and Emery!! I hope you read my blog so you know how grateful I am! I never expected anyone to donate to that site.

I'm working 40 hours this week, but in the nursing world, if your relief doesn't show up for the next shift, you are "mandated", you have to stay another shift or risk losing your license and job for "patient abandonment" if you go home when you were supposed to. All bets are on that I will be "mandated" this weekend, as the nurse following my Saturday shift calls off more than she shows up for work. So I've decided if I am mandated for that extra shift, I will donate the money I earn on that shift to my "Heat it to Beat It" page.

Maybe I'll donate a shift even if I don't get mandated, because now I'm inspired!

Thanks again!

Saturday, August 21, 2010

Scientist-Survivor Program

I have been involved with AACR's the Scientist-Survivor Program since 2008.
It is a marvelous program. Fun story of how I got involved there, a woman found my appendix cancer web site and emailed me. She was a renal cancer survivor of many years (not sure how she came upon my site?). She loved what I was doing and we developed a friendship. She was an advocate for renal cancer patients and cancer patients in general in our state government (turns out she only lived 30 miles away from me!). She had become involved in the Scientist-Survivor Program and was determined that I become involved too. She encouraged me to apply to the program, said I HAD to be a part of it. I needed a recommendation letter as part of my application, which she wrote for me.

I was accepted into the program and attended my first AACR annual meeting in 2008. I was blown away. The conference was huge, with 17,000 cancer researchers, oncologists, nurses and survivors attending. There were hundreds of presentations offered from scientists revealing cutting edge cancer research findings. I learned so much...and I love to learn.

The Scientist-Survivor Program accepts about 30 of us a year to attend the annual meetings. All of us are cancer survivors who have become advocates. As part of the program we all get to spend time together and learn from each other. It's an amazing group, I was so inspired by many cancer advocates. We learn so much at the annual meetings. We are able to share what we learn with others in the cancer community when we return. We are also treated very well. We have a Scientist-Survivor meeting room at conferences where we can all go to have meals together, there are special presentations for those in our program, we get to meet personally with some of the cancer research scientists (that's how I met one of the founders of Stand Up to Cancer).

The Scientist-Survivor Program was the brainchild of Anna Barker (see her here in a news interview), the Deputy Director of the National Cancer Institute. Via the program I have met and spent time with her...and I've come to idolize her. She is brilliant, passionate and caring. She lost all of her family to cancer and has made it her life's mission to see cancer defeated. She is now one of my heros (and I don't have many!)

I've copied the goals of the Scientist-Survivor Program from their web site below. I so encourage any survivor advocates to apply to this program, it is life-changing!

Goals of the AACR Scientist↔Survivor Program

Broaden survivor and patient advocates’ understanding of fundamental topics in cancer research and expose them to the cutting-edge science that is accelerating our progress against cancer today.

Develop an informed constituency of survivor and patient advocates who work in the larger cancer community.

Increase awareness on the part of scientists and survivor and patient advocates of the many ways in which they can collaborate to support, influence and strengthen cancer research.

Develop synergistic collaborations among scientists and advocates to increase funding of cancer research, increase participation in clinical trials, improve the design of clinical trials, increase the number of effective cancer drugs, and facilitate access to cancer information for the general public, high-risk individuals, and minority and underserved populations.

Provide laboratory and clinical scientists with the opportunity to gain a more personal understanding of the enormous impact of cancer on patients and their loved ones.

Expose scientists to the key concerns of survivor and patient advocates, which include survivorship, quality of life, science and public policy, and other important issues.

Disseminate the knowledge and new perspectives acquired through the program to a vast and diverse audience.

Create mutually beneficial and enduring partnerships among advocates and researchers.

Friday, August 20, 2010

Stand Up to Cancer!

On September 10th, Stand Up to Cancer will again host a multi-network television research fundraiser. Fun thing, I was able to meet in person one of the founders of Stand Up to Cancer in 2008. He is a brilliant cancer researcher and scientist I greatly admire and personally like a lot. He is truly dedicated to finding a cure for cancer and is very inspirational. He has passion that is contagious.

Stand Up to Cancer strives to raise funds for innovative cancer research.

Seventy percent of the funds collected go to fund cancer research "Dream Teams", bringing the best research minds together to look for cancer cures. Dream Teams seek to bring some of the best scientists working together in looking for answers, combining their knowledge and resources vs. working independently in their own corners of the world.

Twenty percent of the funds raised are used to fund research that is "out of the box" and would not likely otherwise be funded by anyone.

Ten percent of the funds are used to maintain Stand Up to Cancer.

I kind of think the answer to cancer will be something "out of the box" in the end.

The telethon will air on E!, The Style Network, G4, ABC, NBC, CBS, FOX, HBO, Bio, Discovery Health, HBO Latino, MLB Network, mun2, Showtime, Smithsonian Channel, TV One and VH1 simultaneously at 8pm (7pm Central time) on September 10th.

I think just the three major networks aired it simultaneously last time. Maybe one day it will be on every TV channel simultaneously, the only thing to watch!

When the 2008 telethon aired, at one point so many donations rolled in at once that the software or whatever crashed for a bit, so some funds were lost. I don't think they expected that big a response. I'm sure this time they will be prepared for it.

Cancer has affected ALL of our lives; even those who have never been diagnosed have had someone in their life struggling with or losing a battle with cancer. We all want to see cancer defeated. It's a cause we can all be united for. Maybe Stand Up to Cancer will be the force that unites us and helps us work together to forever be rid of cancer?

Monday, August 16, 2010

Offending web site is down!

I just received an email from the legal department of web host of the Mesothelioma site as I reported them for copyright violation. It said: "We have contacted the owner and have requested the violation be removed, or we have removed the offending website. If you ever come across sites that are violating our Policies, please feel free to contact us again."

I just checked the site...Mesothelia Treatment Options . It is down!!!! At least temporarily (until they remove plagiarized posts).

Yeah!!!

Sunday, August 15, 2010

This is kinda fun now.....

Well, the post I did identifying the Mesothelioma Treatment Options site as plagiarizing my posts was also siphoned and is now on their site, so now they have a post advertising their own plagiarism!!! This is kind of fun! See it here:
Mesothelioma Treatment Options.

It's obvious they plagiarized that one too as it's posted on my blog the 14th and on their blog the 15th.

I was able to easily locate their web host, and I filed an abuse complaint against the Mesothelioma Treatment Options web site...we'll see where that goes!

Saturday, August 14, 2010

Even more interesting.....

Alice did a search of the site "Mesothelioma Treatment Options
The Most Comprehensive Mesothelioma Online Site
". It turns out they've plagiarized at least 5 of my posts from the Appendix Cancer Survivors blog. Alice found them just with a quick search, there are probably more:

http://tumormesothelioma.com/the-cancer-community.html
http://tumormesothelioma.com/more-help.html
http://tumormesothelioma.com/after-cancer.html
http://tumormesothelioma.com/advocating-for-yourself.html
and now my most recent post: http://tumormesothelioma.com/interesting.html

They are also plagiarizing other sites.

The comments to their posts that Alice and I submitted were never published.

Makes me sad that their are people in the cancer support community that are willing to use other patients and survivors....

Let's see if THIS gets siphoned! :-)

Friday, August 13, 2010

Interesting.....

I was googling Heat it to Beat It, to find their home page, as I was hoping it was high up on the Google ranking, and I turned up this website...they had copied and pasted my own Heat it to Beat It August 11 post from my blog (after they removed the link to my personal fundraising page) and claimed it was written by "Mesothalioma Treatment Options". Kind of strange! I wouldn't have minded if they had linked to my blog or stated me as their source, as I want the event to get a lot of attention. But....

See it here on the Mesothelioma web site, the site that is plagerizing my posts from the Appendix Cancer Survivors Blog.

I today added to my site "If you use my posts/content, please link to my site or credit the source" along with a notice that I am now protected by "Copyscape", so do not copy my content.

I don't think I'm such a great writer, but I still want to own what I write, I guess? It come from my, and only my heart. Not someone else's.

Wednesday, August 11, 2010

Heat It To Beat It!

I just made plane and hotel reservation to travel from Chicago to Baltimore so that I can be part of the "Heat it To Beat It" walk September 19th to raise research funds and to increase awareness for those of us diagnosed with peritoneal surface malignancies.

Peritoneal surface malignancies are cancers that deposit tumors onto the lining of the abdomen. The abdomen and abdominal organs are covered by a thin membrane, like Saran wrap. The membrane is medically named the peritoneal membrane. Our cancers are "peritoneal surface malignancies". These peritoneal membranes are the surfaces where cancerous tumors from the appendix form, also other cancers like ovarian cancers, some colon cancers, mesothelioma and primary peritoneal cancer (in primary peritoneal cancer and mesothelioma, the "Saran wrap" lining itself becomes cancerous).

All of these cancers are candidates for the same therapy, cytoreduction surgery (surgical removal of all tumors) and HIPEC, heated chemotherapy infused directly into the abdomen to kill microscopic cancer cells after surgery to help prevent recurrence of our cancers.

Many great surgeons and oncologists are unfamiliar with this treatment for our cancers, so we truly need to help both civilians and medical personnel become familiar with this treatment. These treatments are effective. Peritoneal chemotherapy (abdominal chemotherapy) offers benefits over IV chemotherapy for our cancers. We need to promote awareness, and we also need to raise funds for research. "Heat it to Beat" it strives to do both.

Dr. Sardi is a renowned specialist in these procedures. I have communicated with many of his appendiceal cancer patients. Over the past several years Dr. Sardi and I have also communicated via phone and email. Though we have never met, we truly respect each other. I will finally get to meet him on this trip!

Many of doctors Sardi's patients and families have put together a 2.8 mile walk in Baltimore's Inner Harbor to increase awareness and to raise funds for research for our cancers. Dr. Sardi sent me an email awhile ago inviting me to attend the walk and to meet him. I am proud to do so.

I don't know how many of Dr. Sardi's patients read my blog, but if you are out there and plan to attend the, I SO hope to meet you!!! I know I have communicated with many of his patients over the past 5 years. So if you will be there, please email me and give me a heads up so we can meet real time!! And I encourage anyone who lives close enough to attend to participate, it will be great!

If you want to view the walk's web site, the link is Heat it To Beat It

If you are interested, my personal fundraising web page for the event is Carolyn's Page

And Alice, thank you SO much for your comment and your support of me. You are right, we do all need and deserve an occasional break from the cancer boards, blogs, websites. Thank you for understanding...and I'm sure you've also helped others who need that break! You are terrific!

Tuesday, August 10, 2010

After Cancer

I'm sorry I'm blogging less here. I am writing less in general. I have always written a lot in a multitude of forms...journals, poems, essays, more recently blogs. I've written a lot since about the age of 13. So this is unusual for me. I'm at a sort of strange crossroad. Cancer and survivorship have defined me and much of my writing since my diagnosis in 2001. A cancer diagnosis overwhelms your life, as does treatment, as does survivorship. It's ongoing and life-altering for many years. All we want after our diagnosis is to return to our "before cancer normal". Something we really can't do. We have to create a new normal after cancer. We are never who we were, our lives are never what they were before diagnosis.

I think a part of me is rebelling. I want to try to do life without thinking about cancer...at least a little bit. I read a book once about a physician cancer researcher who was diagnosed with a uniformly fatal cancer. He over-dosed himself on the standard chemotherapy for his cancer and almost died from the effect (he could do that, he was a physician). When he had survived past his life expectency, he gave up his cancer research and his medical career and went to live somewhere on a remote island. He couldn't live in the cancer world anymore, he didn't want anything to do with medicine. He ran away. I don't know if his physically running away helped him to mentally leave his cancer diagnosis (I'm guesing not). But he wanted to try to find a new cancer-free "normal".

I won't ever go that far ever. I truly believe I am meant to stay in the cancer community. I still answer many emails from newly diagnosed appendix cancer patients, and I love being able to do that. In less than 30 days, I will begin graduate nursing education in oncology. Next month I will probably go to Maryland to meet one of the leading appendix cancer specialists and to participate in "Heat it to Beat It".

I feel that I was given the gift of surviving my terminal diagnosis so that I could help others navigating the rare cancer medical maze. I truly feel I survived for that purpose. Is it a coincidence that I was diagnosed with the most aggressive form of appendiceal cancer at Stage 4, happened to be a medical professional who had spent years teaching lay people about their diseases and who before diagnosis happended to be fascinated by rare disease...I don't think so. I believe in Divine appointments, and I think my diagnosis and experience (and survival) was given to me so I could help others diagnosed with this rare cancer. It's my life purpose.

But just for a little bit, I've let myself feel safe from cancer, from the uncertainty, from cancer testing. I'm living a life not focused on the vulnerability cancer makes us feel. My husband and kids and I just did our annual "family vacation". Just the four of us, out of town and spoiling ourselves for a bit. Spending time together as a family; mom, dad and kids.
I don't know how many more years we will be able to do that...in a few years my kids will probably have their own families to vacation with...but I hope they continue the tradition with their own families we've had for many years. So I'm enjoying it!!