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4th-Oct-2012 09:53 am - 365 days
It has been exactly one year since I was diagnosed with colon cancer. What a year! I haven't updated this blog since my surgery in July. Because I had an intestinal blockage at the same time, recovery took significantly longer than my previous surgery. I just didn't bounce back as well. Then, when I did feel better, I had a year's worth of housework and projects to tackle.

I'm still just barely making a dent in the work load, but a writer's conference last weekend gave me the encouragement I needed to get back to blogging. It also showed me that I need to get this information more public and livejournal is just not the right location to do that.

Sooo... please join me over on my new home, Blue Ribbon Threads.
20th-Jul-2012 02:41 am - Surgery countdown-- 5 hours.
blue ribbon
I haven't posted anything here in a while, but I suppose it's time. In 5 hours, I'm having my second surgery. I decided not to sleep tonight because I have to be up and moving around for an hour before i can change my bag, and I doubted that I would be able to wake up at 3:30 in the morning. I'll be sleeping all day anyway.

What I'm having done, why, and some non-graphic detailsCollapse )
2nd-Jul-2012 08:07 pm - Undy 5000
kicking it
This weekend I ran the Undy 5000 5k. Okay, so maybe I didn't exactly run. More like walked fast with 30 second periods of jogging thrown in. I finished at 40 minutes-- about 5 minutes faster than the best of my training runs, but I PUSHED it. Nearly passed out a few times. This last month, I have been sooo sick (Stress from the breast lump caused a severe colitis flare) and I spent about 3 weeks in bed--I almost didn't make it at all.

Then, a few days before the race, I was asked if I would give the survivor's speech at the closing ceremonies. So I wrote a speech, and forced myself to go to the race, even though I came down with a horrible cold two days before. Yay Dayquil!

Because it's the Undy, they encourage you to run in your undies and/or crazy costumes. Done! My team was the Nessa's Butterflies, and of course, we were done up like blue butterflies.

See the whole team!Collapse )
5th-Jun-2012 05:38 pm - Breast Cancer and Lynch Syndrome
pink dress
Let's talk about BOOBS!

(Okay, so I barely have any-- but they're still causing problems!)

It's been a rough few days. I haven't written in a while though, so let me backtrack a little.

In my last post, I told you that I was going to be running a 5k at the end of June-- the Undy 5000. I've been training and getting a lot stronger. In fact, I've been doing a lot of exercise-- it feels so good to have the strength to be active again after being sick for more than a year. I joined SparkPeople and did a fitness test so I can track my progress. The test included push-ups.

Push ups cause sore muscles-- can you see where this is going?Collapse )
20th-Apr-2012 02:19 pm - Undy 5000-- running in my underpants!
blue ribbon
Hey everyone, I just registered to run the Undy 5000 at the end of June in Tacoma. It's a charity run for Colon Cancer Alliance, the group that has been a god-send to me through my cancer. Unlike other cancer charities, a large portion of the money they get through this run goes to preventative screenings for colon cancer. It's a preventable cancer, but people are scared of the screening, so they are working to create awareness and get people screened. If my cancer had been found a year or so earlier, I probably would not have needed chemo.

So here's what you can do:
1. Support me as I run. You can donate online safely at my Undy page-- yay for modern technology! Even $5 will help
2. Join my team! If you're local and want in on the fun, you can join my team, Nessa's Butterflies, and I'll even make you a costume-- wings and all!
3. Join an Undy run in your own state (sadly, they don't do them in Canada, but you could run in Buffalo or Tacoma if you're near the border!) ( http://support.ccalliance.org/site/PageServer?pagename=undy_landing )

Click here to see my page, donate, or join my team!
19th-Apr-2012 10:31 pm - What a MESS!
pink dress
Today was... comical. Every other month, I meet with my surgeon. Because my risk of a new cancer is SO HIGH, I have to have a rectal exam at each appointment. This is not supposed to be painful, but with my proctitis (can't call it colitis now that I have no colon), it hurts! I hate this part of the exam. And yet, my surgeon is one of my favourite doctors. Actually, I love all my doctors right now. Once I ditched the oncologist who didn't care that I'm not textbook normal, and now that my allergist has realized that I am that 0.000000001% of people that are weird (I break out in hives from lactose in pills--this isn't supposed to be possible!).

Anyway, point is, I really love my medical team. The doctors have taken a personal interest in my life. I helps that I'm such a baby and they are used to treating much older patients. They want to take me under their wing at tell me it will be okay. Most of my doctors have teared up while talking with me-- the surgeon mentally compares me to his little sister. So, even though this appointment is horribly painful, I kinda look forward to it. I must be weird.

Anyway, up on the exam table, I mentioned that I've been having a weird stabby pain in my lower abdomen, so he poked around a while to see if he could feel any cause for it. Then I mentioned that my stoma looks like it healed funny-- it's supposed to fold over like a turtle-neck and attach to the skin. Mine is only folded half-way, so he decided to take a look. He has successfully looked at my stoma at every appointment, but...

Don't click if you have a really weak stomachCollapse )
So, after we dealt with the leaky ostomy (see what you missed, you weak-tummied people!), we talked a little more. He's really excited about me re-starting my design business with clothing for people with ostomies and other medical appliances. In fact, he wants me to let him know as soon as I get it up and running. All of my doctors are really excited about this. It's a need that just isn't getting met. I have a feeling my medical team will send lots of business my way! He's also really excited in general about my activism about colon cancer, ostomies, and Lynch syndrome. People are more scared of these things than they need to be. I hope I can be a good example of how life can go on and still be good! Hopefully I can also be that same example to my doctors. I'm sure they see more than enough hurting and dying people-- if I can be the smiling patient that helps them get through their day, maybe it'll help them to be a better doctor.

Okay, that's all for tonight. Look out for more clothing posts to come-- the worlds most amazing pants for ostomates! and my first dress for my fashion line (You guys are going to have to help me think of a name-- Nessabutterfly Creations just isn't going to cut it for this new stuff!). Oh, and you probably want to see my new haircut too ;)
3rd-Apr-2012 04:06 pm - A special announcement
chemo pump
I realized the other day that I hadn't announced this here yet, so I thought I would let my kids do it.

Watch my kids share some exciting news with you
27th-Mar-2012 12:01 am - My 15 minutes of fame
blue ribbon
I was interviewed for an article in the NY Times!

It's a small mention, but hopefully it will help people understand that Aspirin is very helpful for preventing cancer, specifically for people with Lynch syndrome. Of course, the article is a good reminder that I need to take it EVERY SINGLE DAY!
22nd-Mar-2012 02:45 pm - Lynch syndrome awareness day
blue ribbon

Today is Lynch syndrome Awareness day. It's also Colon Cancer Awareness month. I was in bed on "wear blue day" earlier in the month, but since today overlaps both of my major issues, I'm making it my own personal blue day.

It's kinda long, but please read it and pass it on to everyone you know with cancer or a strong family history of cancer!Collapse )
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