Dangit. That’s just how I feel today. Dang Dang DANGIT!

A few days ago, a stranger commented and invited me to visit the Cholangiocarcinoma Foundation’s website. Please allow me to express to you the insane roller coaster ride this site has put me on ever since!

UP: At first I was excited to see a whole entire site, filled with tons of people who have had or know someone who has had the same kind of cancer I have! HORRAY! I’m not alone! I thought. This place rocks!

DOWN: Then I clicked on several of the links on the site to get more information, only to find big fat COMING SOON tags on many of the pages. I felt disappointed then. I looked at the copyright year on the bottom of the page and saw it hadn’t been updated to this year yet and then I started wondering just how long has that COMING SOON postit been up there? Could’ve been there for five years already for all I know. Great. That doesn’t bode well.

UP: But then I found their listing of Major Cancer Centers across the country who I can only assume know a lot about CC (short for Cholangiocarcinoma). That’s super! In fact, after the gray clouds cleared from last week’s report from Dr. DoomAndGloom, Honey and I declared that if we ever run out of options offered to us at UCH, then we’re packing our bags and temporarily moving to Houston to wring MD Anderson for all they’ve got for me. Then, if they run out of options for me, we’ll pack up again and head to Johns Hopkins or Sloan Kettering or the Mayo Clinic. It’s comforting to have links and information to all of those major cancer centers in one easy site like this.

MORE UP: Next I went to the Faces of Cholangiocarcinoma page to, honestly, see the faces and brief stories of many people who have CC. Once again, I felt relieved to actually see the faces of people who have experienced some of the same things I have in the past 6 months.

WAY DOWN: As I clicked on every single name on that page, though, my relief quickly turned to depression. I soon discovered that 8 out of 10 of those people on that page have lost their battle with CC. This sadness and fear lingered with me throughout the evening and well into the night as I lay in bed trying so hard not to think of all the people I saw on there who had died. I kept racking my brain trying desperately to think of just one of those people who’s picture page said, “I am a survivor!” I think there were only a couple. THat’s not enough. That scares me.

UP: Finally, I found the Discussion Board page and I recalled how much comfort my mom found on the Johns Hopkins Pancreatic Cancer message board when my grandfather fought with PC about 5 years ago. Then I felt hopeful that maybe these people could offer suggestions to things I have not yet tried, or words of comfort and support in those difficult doctor visits or post-chemo days.

I read over a dozen posts and replies to the discussion board yesterday.

I signed up.

I got a user name and a password.

DOWN: And then I got really scared. I have this completely irrational feeling that if I sign up, join and participate in that board, that just increases my chance of ending up as one of those Faces who loses the battle in the long run. I know that doesn’t make much sense. At least not enough to stand in my way of reaching out for more understanding, education, support, community. I suppose I could just join in the discussion and admit to them that fear of mine. Maybe that will pull more survivors out of the woodwork to give me hope. (Just a sidenote: I haven’t been out of the house in a couple of days and that’s when the depression creeps up and attacks me more. We’re leaving for Santa Fe tomorrow and I’m going out this afternoon to run some errands with Honey so fear not, I won’t be trapped here feeling like this forever!)

I think I’ll just give it a couple of days. Put some distance between myself and all those Faces of people who have died from this CC. Go on vacation and feel stronger and better-equipped to participate on their discussion board. I do have hope, it’s just that the amount of hope I have fluctuates on an hour-by-hour basis. And I just spent this hour’s worth by offering hope and support to Dee who is very young and seems to be losing her grip on this mortal life.
STOP - END OF RIDE

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Another sidenote: last Saturday we drove down to Fountain, CO to visit the tail end of a horse rescue adoption gathering that my dad’s county sheriff’s posse was helping out with and then we went to Brina’s shop to get my new tattoo. We were at the tattoo shop for several hours, didn’t get home until about 10:00 that night. She kept apologizing that it took her so long to do my tattoo and I kept assuring her I would rather she take her sweet time and get it right than rush through it and make it all messy looking. But really, the truth is, for those 5 hours at her shop, I forgot I had cancer! I got to chat with her for a long time about some of the kids, families, and co-workers at my preschool (she works there part time now so she’s still “in the loop”). I got to hold and smooch her 8-month-old baby girl and just generally shoot the breeze with the new people I met there (the other artists and people getting tattooed at her shop). That was so much fun! Sure, one lady who was getting a pink breast cancer ribbon tattooed on her hip in honor of her best friend asked me if I had cancer (because of my CANCER SUCKS t-shirt I chose to wear). I told her a brief bit about it and she was kind and supportive (though, thankfully not too sympathetic!) about it and then we just changed the subject and moved on to something else. It felt kind of like I was at a party back in college, just sitting around chatting and making jokes with new people. Except there was no beer or margaritas involved, only sterile and noisy needles and a lot of ink! It rocked my world! Thank you, Brina, for those 5 hours of complete fun!