Archives For Li-Fraumeni Syndrome

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Family Update:

We are celebrating the two-year anniversary since my daughter’s last cancer. She is following a more frequent version of the Toronto Protocol (the go-to surveillance program for Li-Fraumeni Syndrome). We ride the rollercoaster every three months – so far so good. She survived her recent 10-day vision quest in the mountains with the requisite three-day fast and the close-call bear encounter with the revelation that she will grow old. I cried. Continue Reading…

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As many of you know, getting a diagnosis of cancer, dealing with the treatment and its aftermath, is a very unique experience. Even being in the role of a caregiver or friend of someone that is diagnosed, is very different than the actual experience of dealing with all the issues of having it and being forced to look at one’s own mortality.

It has now been roughly four weeks since the release of my book “A Kick-Ass Fairy” and the reactions from friends, family, acquaintances and people I don’t even know have been all over the board.

I am pleased to say that there have been many very strong positive reviews, even from people who don’t mention that they have ever had cancer. Then there have been a number of friends who have told me if they bought the book, they would be afraid to read it. Even without reading it, they are afraid they will get ‘depressed.’

Well this is very unfortunate for all members of The Nation of Cancer.

The people who are afraid to read an inspiring testimony of dealing with cancer may be the same people who hide in their shells when someone they know is diagnosed with cancer. Maybe this may be because they don’t know what to say.

If you don’t know what to say to someone who has cancer, then tell the person just that: “I don’t know what to say!”

Maybe some of the fearful folks think if they pretend life is all sunshine and rainbows, then magically they will elude any hardship and will control whether or not illness, especially cancer will befall them. It has been my observation that the avoidance of difficult situations and topics does not necessarily make a person happier, but it can definitely make them shallower.

I have lived for twenty years with the experience of cancer. I have friends and some family, including my daughter, that have made it through, against all odds. I also know many friends that have not made it, sunshine, rainbows and every other available remedy at their disposal. Sickness is a part of life and everyone dies. Oops – a balloon buster!

I have Li-Fraumeni Syndrome, an autosomal dominant mutation of the major tumor suppressor gene of the DNA – P53 – known as the ‘guardian of the cell’. This mutation is in every cell of my body. I already have had 5 cancers and two-hands-full worth of rare, benign tumors. I was recently asked ‘do you live your life worried about getting another cancer?’ The answer is NO. I live my life with passion, vigor and the realization that we can take the challenges that life presents us and do something with them.

That is exactly what I am trying to do and am hopefully succeeding!

If you are a person that wants to be an ostrich and put your head in the sand, I say, “Good for you!” But you are not helping the cause of a cure for cancer nor are you in anyway honoring the people that have or have had cancer. If you are afraid that looking at someone with cancer will make you feel bad, then you need to look at your own issues of mortality. If you don’t want to reach out to those who suffer and lend a hand, (for whatever reason), well, what can I say, other than, if you do nothing, than at least do no harm!

Finally, if you have never had cancer, you are very LUCKY!

I don’t know one person, and I know hundreds of people currently dealing with cancer – not one person actually wanted this to happen. So for the ones that choose to see only the light and rainbows – again I say, ”good for you!” I hope your life continues to be without issues and is blessed with good fortune.

I love my life just the way it is!

What do they say: ‘Ignorance is bliss’ but unfortunately, it is still ignorant!

How do you feel about people that think or tell you your life is too depressing?

 

(Image credit: <a href=’http://www.123rf.com/photo_15936746_ostrich-hiding-its-head-in-the-sand.html’>dedmazay / 123RF Stock Photo</a>)