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.

Monday, August 29, 2011

Our kids...

One thing I noticed as a cancer survivor, my perspective in parenting changed.  I've recently communicated with other cancer survivors who share my view.  Many non-cancer patient parents fear their kids growing up and becoming independent and not needing them.  They wish for days when their kids needed them, wish they were still young, dependent on their parents, in a sense.

Not long after my diagnosis, when my kids were 10 and 11, I wanted so much for them to achieve independence and adulthood.  I wanted them to be able to survive and thrive without me.  I wanted them to have dreams and ambitions and goals that surpassed their need for a mother.  I didn't want to be central in their lives anymore. After I was diagnosed, one of my daughters told me she would want to kill herself if I died, as she couldn't imagine living without me-she wanted to go to heaven where I would be.  That scared me.  She had so much to offer, so many gifts to give to this world. So much purpose left to achieve.

A cancer-survivor friend I recently spoke with had a very aggressive cancer, and is now 5 years cancer-free.  Her children are age 14 and 8.  She said she pushes them towards self-sufficiency and independence.  She never wishes to go back to the old days when her kids were younger.  I am the same.  My husband and I were empty-nesters for a year, and I didn't have any of the issues of grief and loss other parents have.  I celebrated my kid's independence. I was thrilled my kids were making a life of their own away from me, that I wasn't central anymore, that they had hopes and ambitions that didn't include me.   Now I think parents that want their kids to remain dependent on them are kind of selfish.  I want my kids to fly on their own wings! I'm so glad I was here to give them values, dreams and hopes as they grew up.  But my ultimate goal is that they can live a full life without me.  As long as I am here, I want to have a good relationship with them...but I don't need them to need me as they used to.

Thursday, August 18, 2011

Can you please help us with PROGRESS?

I've written here before that I am on the board of a new medical organization, the American Society for Peritoneal Surface Malignancies.  Peritoneal surface malignancies are cancers, like appendix cancer, that spread into the abdomen.  The state of the art treatment for these cancers is HIPEC or EPIC, chemotherapies administered directly into the abdomen.  IV chemotherapies have limited effectiveness on these cancers, where as HIPEC snf EPIC can often allow for prolonged survival, as in my case....I am 10 years cancer-free.

We have some mountains to climb, though.  We need to make this therapy recognized as effective and covered by all insurances (some won't as they consider it "experimental").  We need to gather information to help document it's effectiveness.  We need to make the medical community more aware that this treatment is available.  We need to know how soon patients see a specialist after diagnosis and how they are referred to specialists (self referral, MD referral  etc.) and what treatments they receive before seeing a specialist.  That information has never been compiled.  There is a great need for this information to help promote specialized treatment for those diagnosed after us.

To help overcome these mountains, the American Society for Peritoneal Malignancies is creating a database, PROGRESS, of information answering these questions.  Hopefully the answers will one day be compiled and published in a peer-reviewed medical journal, which will increase awareness and advance our cause in the medical community.

I've had several patients ask me how they can help in this regard, and here is a great chance!  I have a PROGRESS questionaire and I am asking patients who have or will receive EPIC or HIPEC treatments to PLEASE participate!!  You confidentiality will be maintained.  It is really important we get patients and their surgeons to participate!!  If you would like to participate, please email me at carolyn@appendix-cancer.com and I will email you the form and help with any questions you have.  Again, PLEASE help!!!