Sunday, November 3, 2013

Newly Diagnosed with Carcinoid? Here's where to start.

If you aren't already signed up for the Carcinoid List message board thingy over at ACOR, do it now. Like RIGHT NOW. It can be a lifesaving, game changing thing. The folks on there are carcinoid patients, with issues like yours....yes, people just like you! They can tell you all about their experiences with surgery, PRRT, exams and labs......all the things you are going through. Plus, Dr. Woltering is on there and will answer questions for you.....usually with a yes or no or the shortest answer possible, but still.....an answer from the top doc in the field is always good.

Here is the link:  http://www.acor.org/

Just type "carcinoid" in the search box, hit the "search" button and then click on the link for carcinoid cancer and neuroendocrine tumors.



Then enter your name and email address. 






There are a few more steps but I think you will figure it out! I didn't want to create a second account just for the screen shots.






What are you waiting for??  Go do it now!  And hit me up on here or via email if you have any questions.

Tuesday, October 29, 2013

Quick update.....

I’ve been a really bad member of the carcinoid community. It’s not that I’m in denial about my condition; it’s just that when my tumors act all stable, I figure I might as well not talk about them. I imagine there will be a day in my future when carcinoid rules the roost again, and I’ll give him all the attention he needs, but for now I’ve relegated my disease to the back burner.

A month ago I went to a carcinoid conference for the first time since 2011, and I realized just how much I have been neglecting my disease. Someone asked where my primary was, and although I know where it was, the terminology to explain it had escaped me. “Ileum, I think?” was my response. That’s pretty bad. I used to be able to rattle off my entire diagnosis and treatment in a single (long) breath.


Being around other carcinoid patients is a great thing for me. I realize I need to get out into our growing community more. I will be attending the New Jersey Carcinoid Cancer Network conference this weekend. Looking forward to seeing some other zebras and seeing what they've been up to.

Wednesday, August 7, 2013

I am not a mountaineer.

One of the highlights (for me) of our trip was the Matterhorn Museum. I got to learn about Edward Whymper and his success and tragedy on the first ascent of the Matterhorn. I like hiking. But hiking and mountain climbing are two entirely different animals. And that's fine, even according to Whymper: "Others, again, who are not detractors, find mountaineering, as a sport, to be wholly unintelligible. It is not greatly to be wondered at— we are not all constituted alike." (I'm reading and enjoying his book Scrambles Amongst the Alps in the years 1860-69 (Kindle Locations 3686-3688).

At the Matterhorn Museum, I finally learned what bivying is. My brain chose to not process the idea. I looked at a picture of someone in a tent attached to the side of a mountain, and my brain says, "error. does not compute."


This picture does not even begin to match the one I saw in the museum. Maybe Rod took a picture. IT'S A TENT ATTACHED TO THE SIDE OF A MOUNTAIN. WHUT?!

Anyhow, you should at least read a little about the first ascent of the Matterhorn. It has a surprise twist at the end!

Thursday, August 1, 2013

A Swiss vacation?

A Swiss vacation?

Did I just take a vacation to Switzerland? Yes I did. Was there radiation involved? Not that I am aware of.

Rod has had a longtime dream of visiting Zermatt and the Matterhorn. He was there with his family when he was about 3, and his Dad climbed the Matterhorn, and I think he wanted to relive that experience. I tried to encourage him to go to Zermatt last year when we were in Basel, but now I understand why he didn't want to zip down there and zip back. 

First of all, Zermatt is a gorgeous area, and trying to experience it in just one day wold really be a shame. In addition, Rod is a photographer, and if you've ever been anywhere scenic with him and his camera, well...let's just say that you know he needs some time to take 4000 pictures. (Although he did a pretty good job of taking a zillion pictures in our 9 hours in Zurich.)

The highlight of Rod's trip was two parts: first, climbing to the Hornli hutte, the base camp for a lot of folks climbing the Matterhorn. Secondly, Rod has a picture of his family *somewhere* in Zermatt in 1975. We spent our last night hunting down the spot, thanks to a tip from Andreas at The Bubble (an amazing pub where we ate at lot because they had burgers and nachos. Look, just because I'm an international traveler doesn't make me any less American).

We were able to track down the general location: right near the back of the Gornegrat train station. Zermatt has changed a LOT since 1975, but the 7 garage bays on the back of the station were pretty unchanged, and we were able to approximately recreate Rod's photo. It was pretty cute.
This picture would make more sense if I had the 1975 picture as well.  Hint hint Rod.

I'll try and post some pictures from the trip over the next few days. If you follow me on Facebook or Instagram, you've already seen a lot, so I'll try to post new stuff here.