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.

Wednesday, April 27, 2011

A few things!

Sorry I haven't been writing as often,  life has gotten busy!  Mostly school....

I talked to a woman diagnosed with appendix cancer today....she was told she was terminally ill (as I was initially) by a doctor not familiar with appendix cancer.  She is devastated as she has four young children.  I know of many others who are told the same thing.  It's a common prognostic by those unfamiliar with our rare disease.  We ALL need to be seen by an appendix cancer specialists familiar with our disease when we are diagnosed. Usually we have to travel as there are not specialists local to us (I traveled 750 miles). If you are newly diagnosed, PLEASE see a specialist before making treatment decisions!  We have to be our own advocates.  Many very good surgeons and oncologists just don't know enough about our rare disease, they don't see it often.  Specialists have seen hundreds of cases.  I had an initial "poor prognosis" by one oncologist and terminal diagnosis by another and am weeks away from being 10 years cancer free.

Also, I just communicated with a woman who is a 33 year survivor of our cancer!  She's the longest survivor I've known of so far.   I asked her to write her survivor story for my web site/blog. I hope she does!

I also wanted you to check out this youtube video I happened upon almost accidentally:  Distinction Between Curing and Healing by Michael Lerner PhD.  There is a difference, and while we seek a cure, we need even more to be healed.  I loved that he dealt with "mental healing", and that he spoke "the toxic new age idea of keeping a positive attitude when we have cancer".  It is more healing to really deal with and experience all of the emotions we have with our diagnosis, negative or otherwise.  When I was diagnosed I got very weary of all of the people who told me I needed a "positive mental attitude" to beat it...it's not true!!  A cancer diagnosis normally comes with a lot of negative emotions.  Dealing with them and expressing them is a normal part of our experience.  A part of our healing.

6 comments:

Alice R. said...

I totally agree with you, Carolyn. An expert in appendix cancer is required. I saw several cancer experts, along with an appendix cancer expert. The general oncologists, while extremely highly regarded in their field, gave me a poor prognosis. The Appendix cancer expert gave me back my life.

I, too, was told I'd be dead by now. I'm 4 years out, and very healthy.

ORNA said...

I am very happy to discover this blog. I live in Holland and I can not really find such blogs.
I am also a PMP survivor, was treated in a bad and wrong way.They just let me die. At the very very last minute I was saved by a PMP expert who dared operating me. I say 'dared' because I was in a terrible situation and he did the imossible. I travelled from Holland to The hadassah Medical Center in Jerusalem, Israel where I was operated bij the expert Dr.as.prof. Aviram Nissan. In july I will toast to my third year after my (16 hour )operation.
It is so important to meet survivors!

amy in zombieland said...

Just found your blog...I was diagnosed on Friday and i am beyond frightened. I am 36 years old with 2 very young children and feel sort of hopeless at the moment...I don't have all my information as the pathology is not complete but I feel like I am wasting time as they make me wait for doctors...I so hope to be with my boys for as long a I can...

Carolyn Langlie-Lesnik RN BSN said...

Hi Amy,

I'm sorry you were diagnosed with this, especially when you have young children. Please, please see a specialist, even if you have to wait. I didn't see a specialist until 6 weeks after my diagnosis, and in a few days I'll be 10 years cancer free (got to raise my young children to adulthood!).

Carolyn

Hang in there!

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