Tuesday, November 25, 2008

cooking, cooking and more cooking

Whoa, the day just escaped me!  Must be all the cooking I am doing. Thanksgiving is at the Stolen Colon's house this year.  Since I'm no longer a ball of energy, I am trying to do most of the cooking in shifts.  I do plan to enjoy the holiday feast, well maybe not the feast part.  I can eat everything except the mashed taters and green bean casserole, due to the dairy in them.  I also have to eat very small amounts of food at one time.  I guess I'll just be enjoying many mini thanksgivings through out the day!  That actually doesn't sound too bad.  

I met with my colorectal surgeon and his nurses today.  Yup nurses, I got two of them since, as Dr. Kim put it, I am a mystery.  Yeah! I stumped one of the premier colorectal surgeons.  And I didn't even realize I was having problems. . . well kind of.  Starting in the evenings I get these intense cramps.  It starts by the old stoma site and migrates to the j-pouch area.  And it will feel like I have get to a toilet. . . immediately.  Once I sit on the throne, I only seem to produce a few mouse size turds.  Sometimes this will go on for hours, and in the worse cases, through out the night.  Eventually, I'll have a larger liquid movement and the cramping/intense urgency will disappear and I can fall asleep.  I assumed (wrongly so) that this was just life with a j-pouch, and that my body was adjusting.   Well not so much so.  

After having a half hour conversation with the Doc and nurses (wow!  I got is full attention of 30 mins, unbelievable!)  I left with a prescription for Bentyl, an antispasmodic and orders to irrigate the pouch, daily.  (I'll save you from the details on this. For now anyways.)  I also was given strict orders, to call his nurse if I have any discomfort and not to just wait till my next appointment (which is in 5 weeks! Hopefully this means I get to go a WHOLE month before going back there.  A new record. Um, I hope I didn't just jinx myself.)  

And for today's tidbit Thankfulness. . .  I am thankful for how blessed I am.  Through this whole ordeal I have met a bunch of different people with different illnesses.  I am constantly reminded of how lucky I am.  In the whole scheme of things, I'm not sick.  Yeah I lost an organ. . . but I avoided chemo right?!  And I found a doctor who is going to try and save a few more organs and help me escape chemo again!  The crap I deal with now is really just small potholes when compared to the craters that others have to deal with on a daily basis.   

Just the fact that my FAP was diagnosed when it was is something in of its own to be incredibly thankful for.  Just one more month could of made a world of difference.  

Monday, November 24, 2008


Had an appointment with my primary doctor this morning.  Partially to touch base, he likes to stay involved in my care, and also to discuss my birth control options.  Prior to the 
beginning of all this madness, we were getting ready to expand our family.  But now knowing what we do about FAP and that any future children would have a 50% chance of having this disease our procreating has been put on hold, indefinitely.  Those of you who know me, know how badly I want to have children.  Out of everything I've been though, this is the hardest part.
And before you comment that:
  • "It's only a 50% chance." or
  • "cancer research has come so far, imagine where it will be in another few years." or
  • "you have FAP and you're ok."
I have already thought about these things.  I am not saying that what we are choosing to do is written in stone, things may change.  But right now, I don't know how I could knowingly risk putting a child through this.  So far, I am very lucky, it can be a lot worse.  
And yes, I know there are other options out there for adding on to your family.  And when we are ready we will explore them.  But one step at a time.

On another note, since this week is Thanksgiving, I wanted to include in each post something or someone that I am thankful for.  There really is so much that I have to be thankful for.  I am very grateful for all of my doctors, especially my primary, Dr Buckler.  Dr Buckler was the 1st doctor in 7 years to actually listen to me.  He was the one who referred me to the GI for a colonoscopy.  He didn't laugh, placate me or not believe me when I told him I had blood in my stools.  Dr Buckler, has also visited me, on his own time mind you, every time I have been in the hospital.  He is always making  sure that all of me, not just my GI tract, is being taken care of.   Thank you Dr Buckler! 

* Today's picture is of Gracie in her first snow.  At first she was unsure of this white cold stuff but she loves it!  It was near impossible to get a picture of her as she just kept sprinting through the yard.  

Thursday, November 20, 2008

It's official, like referee with whistle. Preach*

Well I got the call and it's off to Mayo I go!  Monday, December 22nd is the consult and then Tuesday the 23rd is the procedure.  Yahoo!  What a relief to have an actual date in writing.  And maybe just maybe I'll be able to be somewhere else for Christmas (like I dunno maybe somewhere a bit warmer. . . Florida?**).  I think I'll have to get the all clear from the doc to travel that far right after the procedure (I believe there are some bleeding risks) and Scott's job will have to cooperate too  (now that is going to be the really difficult part).   But who knows hope has now been restored in the Stolen Colon house!  

*I can't take any credit for todays title.  Credit belongs to the Snoop d o double g, as he left it on someone's voicemail.  
** for non family readers, my parents live in Fl, hence the draw to be there for the holidays beside the warmer weather.  

Wednesday, November 19, 2008

Nothing to report

Nothing really new and exciting to report from the Stolen Colon household.  We are still waiting for the official date from Mayo Clinic.  Right now they are trying to arrange a date where not only does the doc has two back to back slots open (one for the consult and one for the procedure)  but anesthesiology is also free.   The plan is for the doc to sedate me and exam the duodenum via endoscope (camera down my throat).  At that point he will be able to determine if these polyps can be removed endoscopically and if so he will attempt to remove them.  That is really all I know,  hence the point of the consult before hand.  Last time I talked to one of his secretaries it looked like this was either going to happen December 24th or mid January.  I don't know which is better.  The 24th would at least fall under this year's deductible, but heck it it's Christmas Eve!  Not exactly where I wanted to spend the holiday, but if it means these polyps can get taken care of then I am all for it!  I wonder if Santa will be able to find me in Minnesota? 

Friday, November 14, 2008

5 on Friday

Foods I miss dearly.  
  1. Cheese.  Warm  creamy brie, tangy feta, smooth goat cheese on a crisp cracker, stringy mozzarella a top a pizza.  I could go on and on. . .  
  2. Milk.  Cool crisp glass of milk with a warm cookie.  One side effect of the surgeries is that I am now severely lactose intolerant.  You never realize how many foods have dairy in them until you have to avoid them.
  3. Ice Cream.  Soy Ice Cream just doesn't cut it.  It is really just a sad joke.  I almost cried while watching Scott enjoy some Ben and Jerry's Chubby Hubby the other night.  
  4. Vegetables.  Man, what I wouldn't do for some roasted broccoli or asparagus right now.  Hopefully down the road, I will be able to add them back in.  But for now they cause more pain then they are worth.  
  5. Italian Food.  I can't handle any tomato products or dairy.  Think about it, that rules out almost all Italian food.  (Incase you're wondering, tomato burns like no other)

I want to open the FAQ back up. I plan to incorporate them into a weekly Five On Friday.  So. . . let it flow, let yourself go, slow and low, that is the tempo.  (Brownie points to anyone who can name that tune, and Andy you don't count cause you are a freak of nature at this game.)

Thursday, November 13, 2008


Struggling with what to get someone this holiday season?  Why not the 2009 Colondar?  This calendar features 13 incredible individuals, all survivors of colorectal cancer and all diagnosed under the stereotypical age of 50.  Check out Mr February, Jon is a fellow FAP'er.  And while you are at it check out last years hot Miss August, Becca, another Fap'er.  

Tuesday, November 11, 2008

Just a little update

Wow, do I actually have a week without a doctor's appointment? Amazing.  Last Friday's scope and dilation went well.  No major inflammation, and he dilated even though he said I didn't need it.  My  veins are getting harder and harder to get IV's in though.  I'm average 4-5 pokes per visit.  I've also developed quite a tolerance to the sedative.   So now they have to give me the whole shebam to knock me out.  Unfortunately that means I usually have no memory of at least half of the day.  So, if I talked to any of you last Friday, yeah I don't remember it.  Hope I didn't say anything too stupid, but if I did it is so not my fault.   I finally said the "magic words" to my surgeon.  I informed him that some days are so bad that I really want my stoma back.  Well you would have thought I insulted his mother.  Right away he was all "there are so many other things we can try first".  Two of the many being a defagram (xray while pooping.  Now that sounds like a good time!) and a sphincterotomy (basically cutting of the sphincter, another good time.)  So, I guess by telling him I think his work may of failed, I lit a fire under his booty.  
We also got some blood tests back to check my liver function.  All is good.  I am anemic, but that is to be expected.  And we are still awaiting a call back from Mayo Clinic.   I am so nervous that this doctor is going to tell me he can't help me.  I try not to dwell on it, but that is easier said then done.  

Thursday, November 6, 2008

To Live Without

***Today's post is rate MA for mature audiences only.  It may contain emotions and facts not suitable for all readers.   Reader discrection is advised.***  

While sitting at my colorectal's office waiting for the doc, I found myself fascinated with the poster of the digestive system.  I ended up playing a game of seeing if I could locate the organs that I might lose if the endoscopic specialist at Mayo can't help me.   I decided that my insides would be pretty empty.  I've already lost my colon and rectum (and appendix of course, can't lose the colon and keep the appendix.  It would be like amputating the foot while keeping the big toe).  I tried to picture what my insides would look like if I lost my duodenum, gallbladder, part of the pancreas and part of the stomach.   Then I found myself concentrating on the digestive organs that would be left, it didn't seem like much.  Amazing that we can lose these organs and still manage to live.   
On a related note, I am heading back to the hospital tomorrow AM.  Doc wants to have another look around the pouch and possibly do another dilation.  We believe the lovely stricture that landed me in the hospital a few weeks ago is starting to reform.   We are hoping this procedure will help to get rid of the abdominal cramping and help regulate the number of times I go.  Right now, I vary from not "going" for a day or two to the dam breaking and going well over 30-40 times.   FYI both extremes are VERY uncomfortable in their own way.  

Tuesday, November 4, 2008

Bad wifey

Sometimes I feel bad for Scott,  for getting stuck with a defective wife.  For example, last weekend we had tickets to the State game and we knew of a cool tailgate.  But, my abdominal cramping kept us from going.  Then today we had to cut our walk short, again because of my pain. Also it looks like my medical bullshit will eat up all of his time off again next year. Hey honey, how about for a vacation we go to Rochester, Mn and spend all day in a doctors office? Sounds like fun.   I feel bad.  He doesn't deserve this.  

Speaking of Minnesota,  Mayo Clinic now has my file and we are waiting for a call back to schedule an appointment.  I'm not holding my breath.  I know the next available date the doctor has open isn't until Christmas.  So in the meantime, I am trying not to dwell in the "what ifs".  Easier said then done.

Puppy kindergarden was a blast last night.  And Gracie was the cutest one there.  Yeah I'm not biased or anything.  

Monday, November 3, 2008

The good, the bad and the Gracie

So far I've had an interesting morning.  First the good news:  The polyps in my duodenum ARE NOT worse then what we had expected! Yahoo for positve news!  But they still need to come out ASAP.  As of right now, it appears that we will be meeting with a Gastroenterologist at the Mayo Clinic to see if he will be able to remove the polyps endoscopically.  He is "suppose" to be one of best, and if he says he is unable to do it then no one else will.  Now the not so good news:  Due to the placement and size of the polyps it is very likely that they will not be able to remove them endoscopically.  So, we would be looking at modified whipple procedure.  I am pretty upset about that.  I do not want this. I am too young.   That would be a major operation, more major then the total colectomy.  Pooh.  Maybe at a later date, I'll blog more about "The Whipple" and what it entails.  But I don't want to get everyones undies in a bunch until we know for sure.  

On a brighter side, Gracie, Scott and I had a great day at the park yesterday.  It felt so good to get out and enjoy the fall weather and colors.  I was able to get a couple good pictures of the little diva, she doesn't stay still very often.