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.

Friday, August 16, 2013


I have a neighbor I am close to.  She inspires me.  She was like many women of the previous generation...dependent on husbands to make decisions, to lead, to pay the bills, to do the expressway driving etc.  One day, 12 years ago, her husband died of a sudden heart attack. Totally unexpected. He had been her life, her protector, the person who managed her life.  She wanted to die when he did as she didn't know how to live without him, how to live independently.  

But cool thing...she grew.  She wanted to see her grand kids, but couldn't unless she drove on expressways.  So she learned how to do that for the first time.   She'd never used a computer, but bought one one day and asked me to set it up for her and show her how to use it..I did.  She bought and learned how to use a genealogy program.  Her husbands Italian family had been the focus of her married life...but now she wanted to know about HER family!  In the end, she drove all over the country on expressways to meet distant relatives.  She worked harvesting on a farm in the Dakotas with distant cousins.  Spent months in California with newly discovered family.  She wrote two genealogy books.  She traveled alone to Russia and Germany to find more about her roots.  Amazing. 

Today she called me.  They've found a spot on her lung.  They gave her antibiotics...maybe pneumonia?  Though she had no symptoms of pneumonia.  The antibiotics didn't help.  Now a PET scan...she used to smoke but quit years ago (half of the people diagnosed with lung cancer are FORMER smokers). 

She now has the "scanxiety" we all know.  She feels fine!  She said maybe she doesn't want to know..she can just go on with her life feeling great like she does now (at 75) without tests!  They want to do a biopsy...but why?  She feels fine!  Cancer patients feel sick, don't they?  I told her when I'd been diagnosed with stage 4 terminal cancer I'd felt fine too.  She should just get the tests so she knows what she's dealing with.  Though we discussed if she would chose to have treatment if cancer was discovered?

But I'll admit..nowadays I don't want to be tested either.  If I feel fine, I don't want to get tests that might tell me otherwise.  I don't get CT scans or tumor markers anymore, though maybe I should.  I reluctantly go for my to frequent colonoscopies. I have one scheduled soon.

When I am 75, will I get any tests?  Would I want treatment if I found I had cancer?  Something to think about.  I had an 80+ year old uncle who was diagnosed with cancer..he died of the treatment, not the disease.  When do we quit looking for problems?  When is it better not to know than to know and treat?

Tuesday, August 6, 2013

Heat it to Beat It

Going to Baltimore again this year with my daughter for the Heat it to Beat It walk....always enjoy it and am looking forward to it again!  If any of you will be there, please let me know so we can meet up!  I will again have a booth for my organization, the Appendix Cancer Connection.  I will be giving out free appendix cancer ribbons this year!  I love meeting other appendix cancer survivors at the walk, and always love seeing and talking to Dr. Armando Sardi. 

Will try to post pictures when we get back!

Tuesday, July 30, 2013

Such a long time....

I didn't realize it's been almost 9 months since I've posted!  I used to try to post weekly, not sure what became of that.  When I posted more frequently and occasionally went a month between posts, people used to worry I was sick, that my cancer had come back.

I am doing well and am now 12 years cancer free, can you believe it?  This year was a landmark, in a sense.  For many years I had all of my cancer dates in my of diagnosis, date of surgery, date I finished treatment.  I always awaited the date of my surgery, as that is the date my surgeon told me I was initially cancer-free.  So that  date in my mind was always my annual survival date.  I would never tell someone I was a five year survivor unless it was past my 5 year date..not even on the day before.  Didn't want to jinx myself?

Well, this year I actually forgot the date!!  Was it May 12th or May 16th?  Cancer for the first time wasn't in the forefront of my thoughts.  My daughter's best friend sent me a congrats on your cancer anniversary text on the 16th.....turns out I had told her years ago and it happened to also be her birthday, so she remembered.  But it was a relief not to be obsessed with the date anymore.  But it took 12 years?

And while I don't live in fear of my cancer returning anymore, cancer has still left me changed.  I no longer feel safe in the way I did before cancer.  After cancer we always feel a vulnerability that others don't.  Before cancer I accepted I would one day die, but actually facing that reality puts a different spin on that knowledge.  We still always know the bottom can drop out of our lives at any time and in a sense almost anticipate it now?   Getting older doesn't help, either.  Something about getting an often terminal disease that only affects one in 10 million kinda makes you feel the odds may not be in your favor?

But I can now plan for a future....for many years I could not plan life past the next scheduled CT scan (I don't get scanned anymore).   For years I could not make future plans or say the words "next year".  Now I can. For years I only had agency or PRN (as needed) jobs with no I teach at a college and have commitments to students and a 401K.  I'm in school for a degree I won't obtain until 2015.  I can't plan 10 or 20 years into the future, but maybe five?  Definitely progress!