Where to begin?

As you saw in my intro, this is how I hope to process my third experience with cancer treatment. I feel like I’m supposed to share this journey with unbridled honesty yet I’m not completely sure why. Just the idea leaves me feeling rather naked and exposed. Though this little page won’t even be a blip on the world scene, stepping out in vulnerability for anyone to see is a scary thing no matter how you slice it! Alas, I feel I must so here I am emotionally naked and unashamed.
… Ok, well not so naked today, this one’s more about background info. Enjoy!

Third cancer treatment….that’s correct and would you believe that they are individual instances which are not related and not hereditary, as far as my doctors know anyway. Yay, I won the lottery! Wait a minute, that’s not the one I wanted to win! Yes, my doctors are dumfounded and my family is tired.

Some of you reading this have been with me since the first occurrence 17 years ago, but I’ve probably only gotten to know most of you over the past couple of years so I’ll give you a brief history to help with some perspective.

At age 15 I was diagnosed with bone cancer in my right knee which resulted in a very difficult year of 12 chemo treatments and an above knee leg amputation. Think Terry Fox and you’ll get the idea. On the bright side, my sister’s kids love taking me into class for show and tell! Fun fact - they used to pull the legs of their Barbies and say “ look, now she’s just like auntie!” but I digress…

December 2003, 13 years later, I was diagnosed with Chronic Myelogenous Leukemia (CML for short). Because it was my platelets that were affected rather than my white cells (another oddity) a bone marrow transplant would have been even more risky than usual. Thankfully there was a new “miracle drug” which I could simply take at home once a day. The only tricky thing about that is it’s not a cure, it only stops the gene mutation while you’re on it and then you hope your body doesn’t become immune to it over long term use. Before this drug was introduced the survival rate was listed as 5 to 6 years. The long term prognosis with the new drug is unknown as it hasn’t been around long enough to have any stats. Though quality of life has really been quite phenomenal on this med, really you wouldn’t have know I was getting chemo. In short, life was normal.

On November 21 2004 abdominal Fibromatosis (or Desmoid tumor) entered the mix when a grapefruit sized tumor burst and bled out internally nearly killing me. This one’s quite a long story so perhaps I’ll expand on it another day. In short, this stuff has grown back and has migrated and multiplied, hence the need for radiation and of course the reason why I’m writing here now.
For those you who are curious enough to think about googling it, here’s a little more info.
Desmoid tumors are classified as somewhere in between truly benign tumors and the malignant tumors. Desmoids are not truly benign because they are locally aggressive, but they do not metastasize like malignant cancers. The bottom line is that whatever you call them, desmoids behave like cancer and are treated in oncology.

Now then, how’s that for a start? It’s mostly technical background this time but I thought it important to lay down the history of my experience so you’d have a glimpse into the bigger picture. It may also help make sense of things I write in the future.

And there you have it, my first ever blog entry. It’s so liberating! Well, not really but whatever.

Much love to you all and thanks for joining me on this journey!
Carin