Tuesday, October 30, 2012

A little worked up ... all for nuthin.

Saw my primary care physician last week.  Don't think I mentioned that I've had a new guy since the summer.  He's good -- seems to know what's going on, makes me feel like we're a team in coming up with my health care plans, and exercises discretion in what tests we run.  Doesn't overdo it.   I like him.

Anyways, I paid him a visit to check out something that'd been bothering me the past few weeks.  It was a pain in my throat.   I thought it just a sore throat but it wasn't going away over a few weeks, so I figured I'd get it checked out.  He took a look at it, and said it felt like one side of my thyroid was swollen up.  Got a little concerned when he said thyroid, but left the office in a good mood 'cause we had a plan.  Get an ultrasound.

But, later at work (which I'm STILL enjoying). I thought about it some more.  I googled "thyroid symptoms" and my web searches quickly spiraled out of control from there.  It didn't take long before I was googled "thyroid cancer" and came across a white paper about a case study where some patient had stage iv rectal cancer mets to the thyroid.  I just stopped right there.  I know better than to google health symptoms, especially when I think every little soreness, ache or pain could be the C coming back.
 
Anyways, had the ultrasound this morning, and got the word from my doctor's office that it's all clear.  Whatever it is, it's not the thyroid.  Gonna chat with my doctor in a few days to figure it out, but whatever it is, looks like it's pretty minor. 

So, I carry on.

Friday, October 26, 2012

WOCN Conference

Took some time out of my day to man a table at the WOCN regional conference here in Portland.  WOCN stands for Wound Ostomy Care Nurse.  I was looking for ways to promote the Colondar, and my two rockin'WOCN's, Natalie and Hillary, recommended that I contact these guys. 

I figured if there was ever a crowd of people who would "get" the Colondar, it'd be this bunch. 

It was fun.  I sold a few Colondars and talked about it to lots of people.  I didn't sell a bunch, but that's OK.  I just wanted to get the Colondar out there in front of people who hadn't heard of it, and get the message out.  People who hadn't heard of it just loved it, and just the whole look of the thing drew people in.  People commented on how young and healthy everyone looked, and that's exactly the whole point.  Cancer is like the honey badger.  It don't give a shit who old you are or whatever.

I got a few things out of it too.  I met someone who is going to put me in touch with the guy who has an ostomy and has climbed the 7 Summits.  I think his name is Rob Hill.  He's had Crohn's disease since he was pretty young. I definitely want to pick his brain and find out how he climbs with a stoma.  He not only has a big honkin' climbign pack waistband to deal with, but there's a climbing harness to deal with too.  Much trickier than what I have to deal with when I'm merely backpacking.

So, there you go.  Spreading the word.  Gettin' the message out. One person at a time.

Wednesday, October 17, 2012

Rectal cancer at work ...

I'm at work, watching a Webinar on rectal cancer being broadcast online by the Colon Cancer Alliance.  They're showing a few slides on female and male pelvic anatomy right now.  I may have a little explaining to do if anyone pokes their head in my cube right now ... This has very little to do with my job.  Intel isn't patenting anything in this area.  At least I don't think so ...

Sunday, October 7, 2012

World Ostomy Day

Saturday was World Ostomy Day.  Did you know that?  Bet you didn't.  It'saA day for promoting (you guessed it) ostomies and the wonderful people who get to live with them.  My battle with cancer has left me with a permanent colostomy, which mean my large intensive now exits the body via a front-door exit that is not the exit I was originally designed with, my now-absent rectum).   There's other types of ostomies that people have too - most commonly, ileostomies (the end of the small intestine is brought out) and urostomies (used to provfide an exit for urine, typically for people who have had bladder cancer).

The Colondar was launched the same day in Des Moines, but I couldn't go as I just started my new job (which I still really like).  So, when Hillary and Natalie, my favorite Wound Ostomy Care Nurses (WOCNs) at Portland Providence asked me to paticipate in an panel discussion of ostomate living, I was available and eagerly excepted.  I was more than happy to share my experiences with going from being a healthy person to getting cancer and winding up with a bag.

The panel discussion was great, not just because I got to share my own experiences, but because I learned quite a bit as well.  I didn't expect that at all.  I was one or the youngest people in the room, and there were lots of people who had years, if not decades, more of experience with ostomies than I have.  During the talk, I talked about some frustrations and concerns with dating with an ostomy, and how irrigation worked well for me, and insurance coverage.  Afterwards, some people came up to me and shared some of their own dating stories, and encouraged me, which was real nice.  In addition, a few people told me that they were able to get 48 hours between irrigation sessions.  I had said that I typically get 30 hours.  The trick, and I had never heard of this, was to double flush.  That is, when you irrigate, you irrigate twice instead of just once.  Makes sense to me.  Doesn't take that much more time, and if you can irrigate just once over a weekend, well, that'd be pretty cool.  So, something for me to try. I'll report back.

People also shared a few tidbits about making medical supplies last longer.  I've always felt that the medical supply business is a bit of a total racket.  The full cost of my ostomy supplies are something on the order of $5K-$6K/yr.  I have pretty kick ass insurance now, which means I pay only a fraction of that, but I know Medicare coverage isn't nearly as awesome, and I figured I just had to plan on a certain amount of retirement set aside for ostomy supplies.  Well, this one guy said that he spends just a couple hundred dollars each year on ostomy supplies!  I found that a bit hard to believe.  He does the double-flush thing, and instead of a stoma pouch sold by a medical provider, he just uses a bit of toilet paper wrapped around a bit of charcoal held the abodmen with some 3" 3M micropore medical tape.  Voila!  Instead stoma cap!  On the cheap!

I asked him about irrigation sleeves, as I use one each day (as that's what my insurance covers, and that's how I was trained), and he said he uses one for a few weeks.  Sounded a bit gross to me, but he said he just rinses them out with one of adishwasher hose he has installed in his bathroom.  So, there you go.  I wound need to change to a slightly different setup to have reusable irrigation sleeve (mine attach adhesively, so they really can't be reused), but heck, I love the idea of not generating so much waste with my condition (all that plastic waste ... ), and reducing the amount of money that my insurance company is paying to the medical supply company.

 You buy your Colondar yet?

2013 Colondar has been released!

Hey gang, the 2013 Colondar is now available!

http://www.colonclub.com/the-2013-colondar/

The photos on each person's web page are the ones used in the Colondar.  I've seen the final Colondar product and really, it's a top notch job. 

For those of you who donated as "Friends and Family" sponsors, I'll be sending out your Colondar as soon as I get my allotment in the mail. To everyone else, if you want a Colondar, you can order them from the link above. They're only $10, down from the past few years. (And what's that ... just a few coffees?)  We want to get these in the hands of as many people as possible, so buy one for yourself *and* a friend!

If you're not interested in buying a Colondar, that's fine too.  The print Colondar is only part of the project.  The website contains each model's story.  Consider at least going to the website (they're done an excellent job), reading the stories of the surivors featured in the calendar and sharing the link so that their stories are shared with others. The point of the project is to promote awareness of colorectal cancer and to show that young, healthy and active people under the recommended screening age of 50 can get colorectal cancer.
It was amazing to me, when we were sitting around telling everyone our stories, how there was a common theme of doctors not thinking of colorectal cancer being a possibility because they were just too young.  Well, as you can see, cancer doesn't give a rats ass how young you are.  The hope is that this project can help change that perception a bit.

So, remember kids ... get screened!