Friday, September 18, 2009

So the numbers, as far as I can tell, go a little something like this:

  • About 2,000 to 3,000 people in the U.S. get diagnosed with Bile Duct Cancer each year.
  • Bile Duct Cancer is about twice as common in men than it is in women when diagnosed in 60 and 70 year old people. It is 15 times more common in men than women when diagnosed under the age of 40.
  • Bile Duct Cancer is mainly seen in older people with the average age at diagnosis being 73.
  • Median survival for Bile Duct Cancer is 6 months when untreatable by surgery.
  • 5 year survival rate for cases where a liver resection is possible is something like 15-40%
Reading these numbers Becca-style would go something like this:
  • My cancer is seriously rare.
  • More dudes have this cancer than chicks and because I'm a chick with bile duct cancer who was diagnosed while I was less than 40 years old I am even more of a rarity.
  • I'm not anywhere near to being 73 how did I get this disease?
  • I'm lucky that the doctors thought my cancer could be treated with surgery, but super unlucky that the cancer keeps recurring and is spreading.
  • The out-look even with my surgery isn't too great.
Sometimes having bile duct cancer is a very lonely thing. There are no bile duct cancer support groups because there just aren't that many of us who have it and for those of us who do, the outlook is grim. There are no foundations or research groups that I know of dedicated to bile duct cancer. We are a relatively unknown cancer population. And being young and a woman has put me in an even smaller group. I enjoy being unique and all, but this particular uniqueness I could do without. The odds sound grim, but whenever the odds get me down I think of my Star Wars buddy, Han Solo. In The Empire Strikes Back Han considers flying the Millennium Falcon into an asteroid field to escape the Empire. When C-3PO hears this he informs Han that the odds of surviving in an asteroid field are about 3,720 to 1, and my man, Han, responds with, "Never tell me the odds!" And I agree, I don't want to know the odds. It doesn't matter what they are, they are just numbers, and I am not planning on giving up just because the numbers think I should.

Even on the rainiest day, when it looks like all the numbers are against you, you can still choose to defy the odds. And defy them I will!

Friday, September 11, 2009

I know I haven't posted for awhile and I am feeling really bad about that. I promise that I will write something new soon, you know I always have something to say, but, for tonight, I am going to re-post something that I had on my blog on MySpace. I originally wrote this post on November 13, 2006, not quite a year after I was diagnosed. My original post was titled "Wanderlust".

It's an odd thing, to sit here at 30 years old and wonder if the bulk of my years on this earth are now behind me. It really is strange. And facing the possibility that your death may be closer at hand than you would like, brings with it many things, absolute terror for one. Also there is sadness, regret, grief, an odd sort of loneliness, and a glimpse of all the things I may not have time to do or see. But past that is a clarity that I never knew before. It's an odd thing. All these things I will, no doubt, eventually write about, but tonight, ah tonight, my heart is filled with wanderlust…

There are SO many places that I long to experience. And now I may not ever get to see them, but I hope that my sweet Aria, my Kylynn, has enough of her momma's heart to yearn for these places as she grows. And then I may yet get to see them with her eyes.

I want to go to Ireland. It has a pull on me like no where else. I want to see the castles and country sides. I want to walk along the Cliffs of Moher in Clare and breathe the ocean air. I want to visit the Aran Islands. I wish to explore Connemara. And how I would love to stand on the Giant's Causeway in Antrim and watch the sun come up. Ireland.

And then there is Morocco, Marrakech in particular. I so want to experience Djemma el Fna, the "Night Market". The sights and sounds! I can almost smell the cinnamon, taste the orange juice, and see the storytellers and other performers in the square. I am not one who often wants to try odd food, but I want to taste all that Djemma el Fna has to offer. And the just outside of Djemma el Fna , I can imagine the stalls, or souqs, of vendors filled with Moroccan men and women to haggle with over pretty baubles to bring home for my family. And then I wouldn't be opposed to a trip the Fes just for the heck of it. An ancient city, tombs and a palace can't be all bad! Yes, Morocco, I long to walk your streets.

Egypt, not far from Morocco, but it holds a different place in my heart. I long for Egypt. I swear I must have been Egyptian in another life. I can so clearly visualize so many places. Karnak, Luxor, Thebes. I see them so clearly, now I want to walk them. To touch the stone of the cities, to stand in the temples, to just taste the hot desert air. And Alexandria, and Cairo… Oh how I want to see Egypt.

There are so, so many places I want to see and so many things I want to do. I hope that I have the good fortune to be able to do and see at least a little of what's in my heart. And what I cannot, I hope that my little girl has an adventurer's spirit and the odd gift of this wanderlust to see the rest for me.

I do love that post. I love it for many reasons. First, all of those places still have a pull on me. I love just thinking about them! Second, that post, though it was not at all my intention, sent me and Eric on our way to Ireland in October of 2007. My sister, Julia, and her husband, Kelly, read my post and rallied my family and friends to fund a trip for us to see some of Ireland. And what an amazing gift that was! I got to see the Cliffs of Moher. I got to walk about Connemara. And I got to stand on The Giant's Causeway, which was my most favorite part of our trip. I got to see much of Ireland and perhaps someday I will take my little girl there. And I love that post because it speaks of my hope that at least a little of me is in my daughter and that someday she will look out over all the places that I didn't get to see and smile knowing that I am with her always and that all is well.

And so, my friends, even on the rainiest day, there are dreams of beautiful places, memories of what we have seen and experienced, and the hope that those we love will always carry a piece of us with them no matter what the future brings.