Good News Part Deux

I heard from Mayo.  First off, the polyp that they removed from my ampulla showed only low grade dsyplasia (no cancer!).  Yahoo!  And it looks like I have a date for my next appointment.  March 4th. So soon!  It is quite a bit sooner than I expected.  The doctor wants to check the area where he removed the polyp to make sure all the edges are clean.  He will also attempt to remove the other two polyps that he couldn't get to last time.  

Today's pictures are in honor of yet another day here inMichigan where we won't see the sun.  

 And no this is not the end of my "good news" streak!  I still have more to come. . .

End of an Error

Don't worry!  I didn't turn into a popsicle in the arctic weather we had last week!  Nor did I get buried in the 20 inches of new snow we got over the weekend.  (We have gotten 89 inches so far this season, the average for the whole season is 72 inches!)  I guess I just didn't have a lot to say.   But don't fret because I have lots to talk about now!

The first half of last week, I was feeling good.  I mean real good!  I decided not to blog about it as I didn't want to jinx it.  Turns out, I must of jinxed it anyways.  But still where I am today it leaps and bounds better then where I was just a month ago.  I have to say, living with this j-pouch is very doable.  I no longer find myself wishing stoma stan was back.  I probably average around 12-15 bathroom trips a day.  And on average, I only experience those dreadful cramps in the evenings.  Usually around 6 pm they start, but they aren't anything 2 doses of Bentyl can't take care of.   How about that for progress, huh?!  

I attribute a lot of my progress to eating a fruit or veggie with every meal.  I had been cautioned about eating fruits and veggies.  From what I've been told most people with a j-pouch don't tolerate them very well.  I'm glad I threw that advice out the window.  Also I have become much more fluent in my j-pouch's language.  I understand a bit better the signals he is sending me. And he is learning his new job as a makeshift mini colon.  (I have no idea why I think of my j-pouch as a "he".  I just do.  Maybe since he deals with, well, poop.  That sure isn't a feminine thing now is it?)

And I have more good news, but you'll just have to wait. . .  I can't just blurt it all out on a Monday now can I?  

Alright, I must go.  Time to grab my coffee and be glued to my TV and watch history be made.  (yes did I tell you I can also handle coffee!  Well small amounts of it and then I still have to up my H2O intake, but still. . .Coffee.  Yum)  

5 on Friday

It has been awhile. Lets start this up again. 

My new year's resolution this year is: To be as healthy as I can.  With FAP, I basically have a higher chance of a bunch of lovely different cancers and I would really like to slow down or completely prevent the growths of any more precancerous polyps.  So, I thought I would be preemptive.  Since losing the old colon attempting to be "healthy" has been easier said then done.  I have completely stopped all forms of exercises, and I would much rather curl up on the couch with a down blanket than do anything.  It is much easier to eat highly processed prepackaged foods then healthy foods.  So here we go, my plans for the future.

1. Eat a veggie or fruit with every meal.  Basically trying eat different foods with colors from the full spectrum of the rainbow.
2. Walk everyday.  Gracie would enjoy this too.  But here, in Mi in the winter, getting outside is not always an easy or enjoyable task.  That's ok, Dad sent us home from FL with his old treadmill.  Now if we could only find away to get it inside.  (yes we made the 22 hour dive home in a Liberty, with 2 adults, 1 dog, way too much luggage and a very large treadmill.  It was tight to say the least.)
3. Yoga at least three times a week.  Right now while funds are not just low but completely nonexistent, I'll do yoga at home in front of the tv.  I know Gracie will get a kick out of this and pounce on me every chance she gets.  Maybe I can get her to do some downward facing dog with me?  Once we reestablish the savings account, I would like to join a studio.  We'll see. . .
4. Drink a bare minimum of 64 oz of water.  And that is the absolute minimum!  The majority of water I consume just goes right on through.  The colon's main job is to absorb fluids (and those digestive juices, hence the pain of "butt burn"). 
5. Try to eat as little of possible of processed foods.  The more hands that have touched it, the worse it is.  No more packaged crackers, cookies, chips and all that jazz.  

Think I can do it?

*Doesn't Gracie look nice in warm in today's picture?  I picked it, since once again it is snowing here!  I want to crawl into the picture with her and join her in soaking up the sunshine.   Dear Mother Nature, The snow can stop anytime.  Thank you.    

Travelin' J-pouch

Traveling a total of  50 hours in a car with a j-pouch and a puppy is a feat in of itself. Between the fact that they both got their own bags.  Gracie's had toys, 2 days of food, treats, 2 bowls, poop bags, a leash, jerky style chicken breasts and some sam's yams (vegetable rawhides).  While the butt bag contained all my restroom necessities.  Two different hiney creams,  Calmoseptine and Magic Butt Cream (MBC is a throw back from my nanny days.  Equal parts desitin, maalox, lotramin.  I swear by it), baby wipes, rubber gloves (it makes the application of said hiney creams easier to apply and more comfortable), antibacterial hand gel, antibacterial wipes (for those oh-too-nasty toilet seats, there is no hovering with a j-pouch) and a supply of charmin (come on, that cheap toilet paper is rough even on normal cheeks).

Between Gracie and I, we needed to stop at least every 3 hours, but we would push it towards every 4.  And just FYI, whenever possible stop at the roadside rest stops.  They tend to have cleaner bathrooms, which makes relaxing on the pot a bit easier, which in turn helps things to fully empty.  And they have better places to encourage your dog to go.  Nothing like standing on top of a plowed snow mound, in a parking lot, while it is -30˚ and trying to convince your whining, shivering puppy that yes indeed this is a perfectly good place to drop douce.  Rest stops at least gave us a place to walk a bit, stretch her legs and burn off some of that puppy energy.  

With all that said, I think Gracie and I both did very well on our adventure.  I just can't imagine doing it again when she is bigger.  As it was, we took up the ENTIRE vehicle (given is was a Jeep Liberty, but still!)  Or maybe I just need to learn to pack lighter.  

Why Not Me?

Why Me?  In the beginning, right after my diagnosis, I asked "Why me?" a lot.  At one point someone responded to me with "Why not you?"  That gave me a lot to chew on.   Why am I any more special? Why shouldn't I have some suffering in my life?  Why would someone else be any more deserving of this?  The questions have gone around and around in my head.  If at any point I started to feel bad for myself, I just thought "why not me?" 

Recently the original question of "why me?" has progressed. But from a different angle.  Now that once again I have narrowly escaped cancer, why me?  Why am I so lucky?   I see so many others being handed the the shit end of the stick.  Why don't I have to suffer while someone else does?  

It doesn't feel right.  

I'm Baaaaack

Did everyone miss me?  We had an incredible time in Florida with my parents.  We made it down there just in time for Christmas dinner.   I couldn't have asked for a better Christmas present.  

And all I have to say about Mayo is that I love it there!  What an incredible place if you need great care.  Everyone is very kind and the doctors are knowledgeable and extremely thorough.  It is a good thing I like it there, because it looks like I'll  be going back there every 3-4 months for awhile.  

The procedure itself went very smoothly.  The doctor was able to remove the polyp on my ampulla.  The polyp was much larger then the doctor had anticipated and he was worried for a bit that he wasn't going to be able to remove it.  But he did, thank God.  He commented that it was one of the largest he'd seen.  It came in measuring over 2.5 cm, and usually he doesn't even attempt to remove any over 2 cm.   Due to the polyp's large size and the fact the doctor scraped the inside of my duodenum down the the never fibers, I was in A LOT of pain.  I wasn't expecting any pain, so I was a bit surprised when I came to.  I mean we are talking of a 8-9 on the pain scale.  It took 100 mg of Fentanyl to make me even remotely comfortable.  Due to the amount of pain I was in, they decided to admit me.  The concern was pancreatitis or a bowel perforation.   Luckily by morning it was neither of these, and I was allowed to go.

I need to go back to Mayo in a few months so the doc can check and make sure the edges are all clean and there is no remaining pieces of this polyp.  Also I still have 2 more good sized polyps in there that need removed.  Due to there sizes he thinks he will only be able to remove them a section at a time.  

While I was in the hospital there I was speaking with the resident GI and she asked who my FAP doctor was.  FAP doctor, what?!  I guess at Mayo they have doctors who just specialize in FAP!  I was blown away by this.  So, when I'm out there for my next visit I am going to meet with one of these specialists.  

Hopefully this week is my last week of doctor appts for a while.  Tomorrow I meet with my colorectal surgeon, hopefully he agrees that everything is going fine.  I also need to have my GI order an Xray for me.  While at Mayo they placed a stent in my pancreatic duct, and we need to check that it has fallen out.   Other than that we are just awaiting the path report on my polyp (which I am feeling very confident it will be benign).  Then after all that I plan to stay away from the docs for a bit, hopefully until I head back out to Mayo!

Stay tuned for lots of pictures from Florida!   All I can say is it was a good time had by all.  

Real quick update from Scott's crackberry. The main polyp was sucessfully removed. We had a minor scare afterwards and I was admitted for overnight observance. I was doing better this morning and was discharged. So now we are on our way to FL! I'll fill you all in on the details later, but for now it is FL or bust! Happy holidays!

No, thank you

  I just wanted to take this post to thank you, my beloved readers.  Without you, Stolen Colon would have no point.   It is nice to have someone there to "listen" to me rant and rave, to provide support, offer advice and to just laugh at (oops I mean with) me.  It is your comments, letting me know you are out there listening, that help keep me going.

The blog averages around 150-200 hits day,  Holy crap?  How am I that interesting?  All the same, thank you.  You have helped to make this journey easier.   

I always appreciate all the well wishes, good vibes and prayers.  It is nice to know others are thinking of you and hoping for the best.  So this big and heart felt thanks goes out to all the people I have never met in real life, the family members I have drifted from, the long lost friends I had lost contact with, the second cousins I haven't seen in 25 years, my support group of "nesties" and "P&Fer's", and my new online family of FAPers.   

I hope everyone has a warm and wonderful holiday.  I will post when I can.  Hopefully, I will be able to update after the procedure at Mayo and let you all know I will be getting to keep my digestive organs, for a few more years anyways.  

Peace Out.  

Figures

As of last Tuesday, I had to stop all NSAIDs (aleve, tylenol, etc) due to bleeding risks during next weeks procedure.  And wouldn't you know it, I got a POUNDING headache.  I guess that's life.  I have completely slathered my forehead in HeadOn and I'm pretty much inhaling peppermint oil.  

I'm getting pretty excited for Mayo.  I want this done with, all behind me.  I am ready to move on!  Yeah I know I'll have to have screenings for the rest of my life.  But, I want these polyps out of here.  No more worry, if they are growing, invading my bile ducts.  No more wondering if I look a little yellow today (jaundice is a sign that the polyps have invaded the duct).

And. . . wait for it. . . it is starting to looking like we might make to Florida after all!  I really hope I didn't just jinx us. Things are looking good for the Stolen Colon Fam.     

One Week Out

This time next week, those buggers in small intestines will be meeting their match, hopefully.  I am pretty excited for Mayo.  We have found a doggie daycare that Gracie can go to on the day of the procedure.  Since, it could end up being a long day at the hospital, we didn't want to leave Gracie alone in the hotel all day.  We also have arranged for Mr Dexter Cat to have a nice holiday vacation at my Mother in law's.  He loves Becky, and he will relish in some quiet time way from his always pestering little sis.  

Just in case, we are packing some of warmer clothes.   Um, no, not for Mayo.  The high there today is only  6˚, brr.  But maybe, just maybe, we'll make the 30 hour hike to Fl to see my family.  (Where it is a toasty 84˚ today.  Much more my style!)  

Here is to hoping!  

All I want for Christmas

Dear Santa,

I have been a good girl this year (well at least most of the time), and all I want for Christmas this year is for the doc at Mayo to remove the polyps in my duodenum.  I really just want to avoid or at least postpone having the pancreatoduodenectomy (I am no longer going to refer to it as "The Whipple", as that is just too whimsical sounding for such a serious surgery.  Very misleading.)  

I promise to leave you some of my awesome peanut butter cookies, and I guarantee they will be the best peanut butter cookies you will have this year.  With all of my crazy baking while in recovery mode I have perfected the peanut butter cookie.  Chunky peanut butter, more peanuts, salt.  Ah, the perfect mixture of salt and sweet.  

Anyways I digress. . .  So, if there is anyway you have some pull with the people upstairs, I'd really appreciate it this year.  

Thank you.  

PS. Your elf that was covering for you was a bit scary.  He freaked Gracie out.  First he hated puppy kisses, and then he told Gracie he'd mate with her.  So, um, I just thought you should know.  

Sexy Specs

I feel a bit better after my pity party yesterday.  It helped that a little elf gave me an early Christmas gift, an Ulta gift card.  Retail therapy can lift even the most dire spirits.   I decided I need a new nail polish, so I picked out a color that matched my Ebenezer attitude.  Baby It's "Coal" Outside by Opi.  A sparkly charcoal that throughly matches my mood.  

Also I picked up my new sexy specs yesterday.  Last week I paid the optometrist a visit.  After many arguments with Scott over my poor passenger seat direction giving, I thought maybe I should have my vision check.  Especially with the road trip looming in our near future.  

Last weeks visit to the eye doc turned out to be quite the event.  Besides finding out my eyesight is pretty bad and that I should be wearing glasses all the time, especially while driving.  (The doc was surprised I was able to pass the vision screening at my last license renewal, I didn't inform I got lucky guessing half the letters.) I also learned that I have some manifestations of FAP in my eyeballs.  (Can I please escape all things FAP for one week!?) Turns out I have a few CHRPEs (stands for Congenital Hypertrophy of the Retinal Pigment Epithelium.  Yeah, CHRPE's, pronounced chirps, is much easier on the tongue) on each of my pretty eyeballs or actually my retinas.  CHRPEs are much like freckles or birthmarks on the retina, and are present since birth.  While all the reading I have done on CHRPEs, indicates they are a benign condition, my eye doc wasn't as laid back.  He talked me into getting these crazy pictures taken of the back of my eyeballs, so we had the size and location of the CHRPEs on file.  He was concerned if they grew or changed in anyway it would be a sign they are cancerous.  So basically, he said it is now really important to go to my yearly eye doctor appt. if nothing more then to monitor these eye freckles.   Oh yeah, and that super high tech eye ball picture taking, think insurance covered that?!  Of course not.   

After learning about my new FAP apparition, I had to pay.  (I am seriously wondering what is the point of eye insurance at this point)  As I whipped out my wallet to pay, I accidentally threw my back-up undies across the office.   Life with a j-pouch doctrines that you  must carry a back up pair of underwear with you at all times.  You never know when you might read the new plumbing's signals wrong, and I have learned it is always better to be prepared.  Over the next 30 seconds (which felt more like 10 mins.) I had to decide if I wanted to ignore the neon pink under-roos that were now sitting 15 feet away, or calmly say "excuse me" and saunter over to them and pick them up.  If you're curious, I ended up embarrassingly walking across the office and cramming then back into my purse, the whole time with a matching pink face.  

Bah Humbug

Two weeks until Christmas.  It sure doesn't feel like it.  This suppose to be the "most wonderful time of the year".  I'm just not feeling it this year.  There is no holiday spirit at the Stolen Colon house.  No tree, no lights, no holiday music, no gifts. . .  What's the point?  We'll be at Mayo over most of the holiday and my medical b.s. has eaten up all the finances that would have went to Christmas.  Don't mind me, I am just throwing myself a Scrooge style pity party.  Originally the plan was to drive to FL, to spend the holiday with my family.  We have only spent one Christmas with my family in the last 7 years.  I had high hopes that after the Mayo procedure, we could hop in the car and make the 30 plus hour trek to FL.  But yeah, once I quite dreaming I realized that A. we might not get the a-ok to leave mayo in time and B.  that it is contingent of Scott's job letting him have more time off.  Ha.

And yes I realized I lied to you all yesterday.  I had intentions of doing another post, but my pity party got in the way.  

Today's picture is from Christmas at the lake last year.  

The Final Exam

Here are a few pictures from our "final exam" on the last day of puppy kindergarden.  

Congratulations Miss Gracie!  I'm proud of you, now on to the next level.  

*There will be another post later today.