Going North

After much debate, Scott and I decided to bail on Rothbury.  I know in my heart this is the right decision.   While Rothbury would have been a lot of fun, it also would have been stressful.  

After all that has gone on I really want to spend the week with my family.  I know sitting by the lake, lounging, enjoying nature, and some of the best company will do wonders for my spirit.  Also I won't be able to see Andy again until Christmas time. 

 So with that said, I am headed North.  I plan to relax and enjoy myself.  I am not sure how often I will post updates, but I will take lots of pictures for future posts.  Hope everyone has a wonderful Fourth of July.

 

"So goodbye for awhile, I'm out to learn more

About who I really was before

Yeah I'm going north

Up where the hunted hide with ease

Under the arms of eye-less trees

Up where the answers fall like leaves

Oh and your love is all I need

Yeah I'm going north."

                                                              Missy Higgins, Going North

Honesty Sucks

Ok.  So I said I was going to be honest. . .  Just note it is very hard for me to be honest about my feelings.  It is just an issue I have. 

Today I am sad.  Sad and angry.  You know what is making this the hardest?  Having to go through all of this without Koda.  When ever I was down, she was there to cheer me up.  She had a talent for reading others moods and reacting accordingly.  If I was crying, she would come over and snuggle up to me.  Or, if she felt I needed a pick-me-up she would act silly or start going "woooo woooo" just to make me laugh.  She was great at helping to take your mind off of things.  If she felt you needed to take a break, she would bring her rope bone over and lay it on your lap.  Then, she would keep nudging you with her nose till you gave up and played with her. 

I find myself asking "why?" a lot.  Why did God have to take Koda? Why did she have to die then?  Why do I have to deal with all of this without her?  If only she was here now, this would be easier to deal with.   I was still grieving for her when all this

medical bullshit started.  I never knew I could miss a dog so much.  But I guess that is because she always was more than a pet to me.  She was my baby girl.  She was my best friend.  

Sorry for venting. It is odd, I feel kind of guilty about it.  It is like

 I'm letting everyone down.  That I am not being the strong person you think I am.  But, I said I'd be honest.  So there it is.    

To Roth or not to Roth

Five months ago, Scott and I bought tickets to this awesome music festival, Rothbury.  When we purchased these tickets we had no idea what the future held for us.  Now, one week before the festival, I don't know if I want to go anymore.  Up until 2 weeks ago, I was counting down the days. I was so excited I couldn't think of much else.  But now. . .  not so much.  Its weird.  I know how badly I wanted to go, but now I just don't want to.  I would rather go up to the cottage and do nothing.  I'll probably regret it if I don't go.  I mean, I am a huge DMB fan, and this is going to be an incredible concert.  But on the other hand I just don't want to put up with the stress of going.  The stress of camping with 50,000 others on an open field, the stress of no sleep for 4 nights, the headache of having to buy overpriced food and water. . .  I feel really bad about this.  It like I am torn.  Pre diagnosed Steph is saying "GO!  This will be the last time you will be able to do anything like this!"  Post diagnosed Steph is saying "Just go up to the cottage and chill.  You have enough stress in you life without adding this in."

And the debate goes on. . .

The Duodenumal Dilemma

2 offices, 5 nurses, 3 hours in a waiting room, countless outdated magazines, and 2 surgeons later. . . .

I am attempting to organize everything we learned today into orderly thoughts while enjoying a beer (Magic Hat # 9, if you must know. Besides my days of being able to consume beer, among other things, is numbered) 

A lot got said today.  Some decisions were made (like where are we going to eat lunch), some pieces of the puzzle got put together, and some things are still left up in the air.  I will attempt to give a brief breakdown of what went on:

1st Visit, Colorectal Surgeon, Dr Kim 

• He pretty much didn't tell us anything that we didn't already know, except that we can do this procedure laparoscopically.  Which would mean quicker recovery, less pain, less scarring.  Hey, I am all for that.  Dr Kim was concerned w/ me still being able to wear a bikini.  He didn't quite get that I am completely cool with the scars.  These scars are my battle wounds, and I will be proud of them.  He kept saying "Seriously?" 
• July 22nd is the official date for the first surgery.  Feels so good to have a date now.  No more waiting.  This surgery will last approx. 4 hours.
• Ave. 4 days recovery in hospital.  1st 2 weeks at home will be the worst.  Pain and extreme fatigue.  Also adjusting to life w/ an ostomy.  There will be a home nurse who will visit daily during this time.
• After 1 month, will begin to feel better and start to return to normal life.  
• After 3-4 months,  examine new pouch to see if it is ready to go.
• After the all clear, schedule the "take down" surgery.  Which will take approx. 2 hours and 3 days recovery in the hospital.
• Then it is all about adjusting to life with the new pouch.   Average about 8-12 weeks till comfortable.  And then it about a year till returned to normal life.  

2nd visit, Specialized Surgeon

The 2nd office visit was not so cut and dry.  Basically we weighed the pros and cons of going through the surgery to remove the polyps in the duodenum.  It is an invasive major surgery and at this point we have decided to wait.  

While the polyps are quite large (one is 1 inch) and very close to the pancreatic duct.  There is no real rush for this surgery, other than I will already will open and on the table.    No matter which route we choose (operate now or just monitor and possibly operate later)  I will have to be scoped every 6 months (both upper and lower).  At this point we can just monitor them and if they start to change (dsyplasia, growing larger, growing over ducts, blockage) we can do the surgery then.

The duodenum can only handle being cut open so many times and I hate to waste one of those times when it doesn't "have to" happen.  As long as I am vigilant with getting my scoping done there shouldn't be any problems.  

Phew, that was a lot.  Enough of this, I am off to enjoy another Magic Hat.  

I'm Sorry. No wait. . . No I'm Not

I have decided to completely honest in this blog.  I want to tell my whole story without censoring myself.  I apologize in advance for all the "talk" about poop, colon, bowels (or lack there of) and so on.  No wait.  No I am not sorry.  That thought process is part of the problem.  

Colon cancer is the uncoolest of all the cancers.  I know, all cancers suck really bad.  But colon cancer comes with an additional stigma.  It is the least talked about cancer.  Yet, colorectal cancer is the 2nd leading cause of cancer deaths in the U.S.    

It is almost like having colon cancer is something to be ashamed of.   How many celebrities have ever come forward with having a colorectal cancer?  Ok, Sharon Osbourne, but who else?  Really, all those famous people out there and only one publicly announced they had colon cancer?  The National Cancer Institute estimates there will be 148,810 new cases of colon and rectal cancers this year.  

We don't like to talk about our bowels.  Going the bathroom is a private matter, yet we all do it. I will admit, I get a little creeped out just think about putting my personal info out there for my family to read (not as much creeped out about random people reading it, though.  Odd.)  So, family, be ready to hear about my colostomy, the problems I'll have with it (like leaking everywhere), issues w/ control, butt burn (like diaper rash for adults, lovely!), my new bathroom habits, just to name a few.  

But, if little me is able to help change just one person's perspective of colon cancer, colostomies and the like; then maybe there is hope for getting people more comfortable with it.  There is still a lot left to learn about colorectal cancers and FAP.  Maybe if the stereotype starts to get broken then there will be more funding for research.  

With that I vow to be honest and not to sugar coat anything that I may go through on this journey.   I have decided, that after my surgeries I plan to post pictures of my incisions, scars and ostomy.  It is unfortunate that there is not more pictures out there.  If there was, maybe  it would help to lessen the stigma that goes along with it.  Everyone's initial reaction when they hear I will have to have an ileostomy is: "will you have to have a colostomy bag?"  and followed by an "Eeeewww!"  Thank you people, that is my body you are ewwwing.  And, you know that ostomy that grosses you out, well it saved my life.

Ok, stepping off my soap box for now.  Thanks for "listening" to me rant.  

3rd times a charm

Just got back from the endoscopic ultrasound.  Warning, sedation has not worn off yet.  

Basically there is one main polyp that they are concerned about.  It is bigger in size and near the bile duct.  Unfortunately it is flat so it definitely unable to be removed endoscopically.  There were other polyps in there, but they were very small.  At this point we believe the plan is continue to monitor the small ones with regular endoscopes.  If they begin to change, then later they will have to come out also.  The larger polyp near the bile duct is the one they want to remove surgically.  It could cause more problems if it continues to grow over the bile duct.  Other than all that we really won't know much more until after our visits to the surgeons next week.

The good news is that none of the polyps were growing into the walls of my duodenum or other surrounding organs (stomach, lymph, pancreas).  So, for the first time since this whole shin-dig started we received some positive new.  Once the duodenum polyps start to grow out in the other areas the treatment is MUCH more dramatic.  So in honor of getting good news I added a cottage sunset pic.  

OK, must go lie down now. It was actually very difficult to form words into sentences!

Jack Johnson

First off Jack was awesome! Completely worth the 2 hr drive over there and only getting 3 hours of sleep. On that note, I do "feel my age" today. Once upon a time, I could get 3 hours of sleep and still function fine. Yeah not anymore. I will upload a couple pics from the concert later tonight when I get home from work. But seriously a great show! Too few artists sound as good, if not better, than their albums!

Well, we had to do a bunch flip flopping with doctor's appointments this morning. After 1 hour of talking to the office nurse and way too much hold "muzak", we finally got things worked out. There was a conflict where the endoscopy and the surgeon for the duodenum were only available tomorrow, at the same time. Their next available appointments weren't for a month! After I finally told one of the nurses that my GI had said "time is of the essence" and "we need to get this ball rolling". She said "ohhhh let me put you on hold a minute" and lo and behold a time slot opened up for the surgeon next week.

So, tomorrow afternoon I have an appointment for a endoscopic ultrasound. This is my second endoscopy procedure. If you would like to learn more about endoscopic ultrasound click HERE. (since "here" is a different color and underlined, it is a click able link, it will take you to another page with more information on it. ) I will post tomorrow with any news from this EUS. But please note, I am given lots of drugs (one being Demerol) for this procedure. I will be loopy, and cannot be held responsible for any of the blogging I may do tomorrow. The main reason we are doing it is to get a better look at the polyps in the duodenum, to understand their depth and to get a better look at the surrounding organs.

Next up on my tour of Grand Rapids medical community: On Tuesday the 24th I meet with both of my surgeons.

"It will teach you to love what you're afraid of
After it takes away all that, you learn to love
But you don't always
Have to hold you head
Higher than your heart"
Hope by Jack Johnson

29 and Holding

29 nine years ago today (or is it 30? depends on how you count). . .  Today is the first of many 29th birthdays.  I have always claimed that I don't feel my age, but now that I have a condition that normally only happens to 60 years olds, I think I am going to have to change that saying. 

But for some fun, tonight my parents, Scott and I are going to see Jack Johnson.  Should be a good time had by all.     

The Ball Is Rolling

Yesterday my main GI called me to talk about the polyps in my duodenum and to tell me we "need to get the ball rolling". He said he would schedule a few appointments for me. Well damn. They called me this morning wanting to know if I could be there this afternoon. Yeah I work, so that was a no. But I am going in on Friday to meet with the surgeon who will be working on my duodenum.

So weird that I have a 'team' of doctors working on me. Previously I was a relatively healthy person (minus the poop problems). How did I go from being a healthy person to a person with a team of doctors? Sometimes it feels like they have the wrong person. Are we sure that was my colon you were looking at? I look healthy on the outside, so how can I be so sick on the inside? Its almost like my body let me down. Hey I've been keeping up my end of the bargain here! I try and eat healthy, exercise, get plenty of fiber, water, vitamins, organic. . . but then my body didn't keep its end of the bargain.

I am realizing that is a good thing next week is my last week of work. First of it is really hard to be a nanny and have all these last minute appointments. And secondly all the stress of this has shot my nerves. I feel really bad, but I have very little patience with the kids now. A nanny needs to have nerves of steel, but mine are frayed to all hell.

On that note I need to rest before the kiddies wake up. If anything I have been extremely fatigued lately.

A beginning

On June 4th, 2008 I was diagnosed with Familial adenomatous polyposis (FAP).   This is a really good site to learn more about the disease.  It is suppose to be an inherited disease, but I am the first in my family.  Lucky me, I'm a spontaneous mutation.  

I went in for a routine colonoscopy.  I had IBS like complaints accompanied by blood in the stool for many years.  Yes, yes, I've mentioned this to many doctors. All whom pretty much blew me off.  One even told me that is was not blood I was seeing in my stool, but spaghetti sauce.  How I'd like to run into that doctor now.  Anyways back to the story. . . my now wonderful GI discovered hundreds of polyps in my colon.  Since then I have also under gone an upper endoscopy, which discovered even more of these precancerous polyps in my duodenum.  (The duodenum is where the small intestines meet the stomach.)

At this point, the medical procedures we believe I will under go are:

• A total colectomy with a temporary ileostomy.  During the surgery the entire colon and rectum are removed and a temporary ileostomy is made.  Also a J-pouch will be made using the last 8 inches of my small intestines. I will temporarily have a colostomy bag while the new plumbing heals.
  
• Duodenectomy   This surgery will hopefully to be preformed at the same time as the colectomy.  It will remove polyps from doudenum.
  
• The Take Down.  This surgery will be performed as soon as I heal from the 1st one (or two), probably 8-12 weeks (if I am lucky, and I think I am do for some luck).  They will remove the ileostomy, and I will begin using my new j-pouch.  The j-pouch will allow me to have stool movements from the anus like a normal person.  However, unlike a "normal person" I will have 8-10 watery movements per day with a few of those being at night.  Great.  

I still have a lot to learn and understand.  I will probably have four more doctor visits in the next two weeks.  A visit to a special GI, an office visit w/ the surgeon to perform duodenectomy, another office visit with the colo-rectal surgeon who will preform the colectomy, and another upper endoscopy/ultra sound to get a better look at the polyps.  

I'll update as I learn more.  This is enough for one day, besides I'm missing Weeds.