It's all good

It is ALL GOOD NEWS.  At this point in my progression of the disease I do not need a chemopreventative. Everything can be managed by yearly scoping.

Everything went great at MD Anderson.  I LOVED (like really loved) the doctor.  It was so nice to be seen by someone who not only knows his shit but also talks to you like an educated person.  It was fun nerding out and discussing research and clinical trials.  (I was, however, unimpressed by the hospital itself.)

Between the cold forceps and argon plasma coagulator, most (all?) of my polyps were removed.  We are awaiting biopsy results of some, but there is no reason to think the worse.  As for the j-pouch, there were a lot of polyps BUT he doesn't think they are all adenomas (the pre-maliganat bad guys). He wasn't sure what they were so we are awaiting those biopsies also.

Oh yeah, on the last post I did bad math.  It's been 8 years not 9! Glad to know I can count.

Nine years later

We now live in Texas and have two amazing and wild-as-all-hell little boys*. Gracie is still with us and going strong at almost 9 years old.  I have fallen in love with powerlifting** and I am working on starting my own nutritional consulting business.  9 years ago, I was worried about how this diagnosis and the following surgeries would affect my life.  I have to say, they are not holding me back at all. 

In 3 days, Scott and I will be waking up at 3 am and taking our 1st ever vacation alone together traveling to Houston to go to MD Anderson for The Yearly Checkup.  Last year, I saw a doctor locally.  He found “hundreds of polyps in the J-pouch and duodenum” (and was unable to remove most of them due to the amount).  I asked him what this meant for the future.  Would I one day be facing a pancreatoduodectomy or a return to the illeostomy?  He responded with “I don’t know”.  Now, in his defense he as only seen one other FAP patient in his medical career.  With that, I decided I needed to be seen by someone. . . oh just a little more specialized.  

Which brings us to MD Anderson.  While at MD Anderson not only will I be getting upper and lower scope, but I will also be getting my thyroid screened and checked for desmoid tumors (especially important since I have had 2 c-sections in 3 years). Talk about 3 birds with one stone!  I am also hoping to find out if a chemopreventative might be something that could help slow down the growths.  

This trip will be the longest that I have ever been away from my boys. I am trying to think of it as a mini vacation.  A vacation that will include some fasting, some uncomfortable procedures, some dr visits, lots of waiting rooms and some poking and prodding.  But there will be a hotel! And it will be just Scott and I!  And restaurants! Restaurants without little ones in tow! (Well, when I’m not undergoing The Prep.)  Truth of it is, I am more nervous about leaving the boys then I am about the procedures.  We are planning to be there for 3-7 days.  So far I have only been away from them for one night. Thankfully I have a wonderful mother-in-law who is flying down to watch the boys for us.  

I will update here when we get the results.  I also might (just might) do some live updates to snapchat.  (For the record I have no idea what I am doing with snapchat.  But, I am under the impression that no one knows what they are doing with snapchat, so it's all good)

*(Yes, FAP is an inherited autosomal dominant gene. Yes, they both have 50/50 odds of having the gene. No, I won’t discuss their DNA here.  That is their story to tell if/when they want to tell it.) 

** (I’m not very good at the powerlifting thing yet, but I am working on it! Recently hit a 1x bodyweight bench, 1.5x bodyweight squat and I working on a 2x bodyweight dead lift.)  

Don't call it a comeback...

. . .well, at least, not yet.  Lets see if I stick with it.  Lately I have been toying with the idea of blowing the dust of this old blog and writing again.  It has been almost 3 years!  Three years! Yeah, sorry about that.  But sometimes blogging about your life can be challenging (about that in another post).

I did, however, promise I would always update with my health.  So here it is.  I'm good.   I am great.  Life is great.

 I have an upcoming trip to Mayo Clinic planned for the end of June.  Two fun filled days of being poked, prodded, scoped and more. Yahoo.  Honestly, I am nervous as all get out for this appointment.   I haven't had an upper scope in 3 years!  (In my defense that was at the recommendation of the GI at Mayo, but going that long between scopes is a bit unheard in the FAP community).  But 3 years!  So much could have grown or changed in 3 years.  I am doing my best not to dwell.  It is what it is, and I cannot change it at this point.

While at Mayo this time I will be going for the 3 for 1 deal.   While I am under for the upper scope, they will also do the lower end.   I will also be getting a thyroid ultrasound done while I am there.   (The latest research out of Cleveland Clinic is showing the incidence of thyroid cancer in FAP patients is much greater then previously thought).   I figure more bang for your buck this way.  Well, not really.  We will still be spending what most people will spend on a nice, FUN vacation somewhere else.

I do have a handful of other post in the works, that is if anyone out there in is still interested in reading them.    I promise to (try) not whine (too much) and to show how life with FAP is not  a death sentence and that living without a colon isn't all that bad.

As always, a Gracie picture. 

  (Photo by  Decisive Moment Photojournalism)

And I'm back

We're home.  And I'm pooped. But on to the news . . .

The procedure went well.  Very good actually.  The Doc said the previous lasered areas looked great.  ( Um, is "lasered" a real word?  Well it is to me.)  No signs of scarring and the ampullectomy site healed nicely and no new polyp was growing back in that tricky area.  (that is very good news.) There were, however, a few baby* polyps starting in the duodenum.  But, have no fear he blasted them with his Argon Plasma Coagulator.  No, I'm not being funny. 

 So, the good docs recommendations.... come back for another scope in, get this THREE YEARS. YES THREE YEARS! HOLY FREAKING COW! THREE YEARS! (sorry for yelling)

Ok ready for some truth? I don't know how I feel about that 3 year thing though.  Part of me is excited.  Part of ( very big part is unsure). 3 Years is a long time.  In 6 months I already started growing new polyps, a lot can happen in 3 years.  Hm.

As for other things,  9.22 I have a local ( thank goodness) appointment with my colorectal for my yearly scoping of the j-pouch.  It is too early to see any polyp growth in the j-pouch ( should see those start growing for about another 4 years) but I still have a few cm of rectal tissue left, which can turn cancerous at any point and needs to be regularly monitored.  

Other non-FAP related things.  Its 9.11.  How can I bitch and moan, or even celebrate my good news?  Puts life into perspective for you.  

Tell your loved ones how much they mean to you.

*"few baby polyps" were the doctors words, not mine.  Seriously doc, could you not have quantified that for me?  How many is few? 2? 3? 4?! ANd baby?  is that 1mm?  2 mm?!  He will cc: me on a letter that he sends out to my local doctors which will have all the specifics.  I'l just have to wait a month or so for those details.  

Hi-Ho The Dairy-Oh

It's off to Mayo I go.  Again.  

We leave eeaaarly tomorrow.  My appt. is Wednesday.  09.09.09  That date looks lucky right?  

By the time I am safely tucked back in my own bed (hopefully by this friday) we will have logged around 1600 miles.  Joy.  

Honestly I don't know what to except.  But here is to hoping that nothing is found.   

I'd be lying if I said I wasn't tiring of this.  

Sweet Primitive

I love music. I probably have my parents to thank for a lot for of that. Growing up there was lots of time spent in the car (and I mean lots! I would love to know how many hours we clocked just driving around, not even counting the road trips from Florida to Philadelphia).  And whenever we were in the car there was  always music playing.  I was 12 or so till I realized that yes indeed a car did run with out the stereo in fact being on.    

My Dad also fed my love for overanalyzing the lyrics. Repetitively I would ask what a certain artist was singing about. I can remember being perplexed as a young kid about why would so many adults chose to sing about love, when there were so many other things to sing about! Then, one day I had the unfortunate accident to ask about Jimmy Buffet’s "Why Don’t We Get Drunk". Dad put and a straight face looked directly at his pre-teen daughter and honestly answered her question. But, I must say it was a long time before I had the gull to ask what another song was about after that (just out of plain fear of the answer!)

To help nurture this bond between us, Dad took me to my first concert. I was about 10 years old. Poor Dad, this would not have been his first choice for a concert. However, I wanted to go, who was he to discourage me? So, we went to an evening of New Kids on the Block. Honestly, I can remember being a bit disappointed. I can remember asking Dad many questions as we drove home. Like “What’s lip-syncing?” My love of NYKOB only lasted a year, then I was I was on to discovering much more in the world of music. (Ah, I was on a year or two away from the years of Grunge)

Well, Dad we have come a long way. It had been 20 years since that first concert together. And tonight we go see my all time favorite band. Again, you and Mom are going with me to see MY favorite group. Well at least this time, they have been my favorite for 14 years, instead of a few months.

Even though they are predicting a 50% of thunderstorms, that doesn’t take anything away from this concert. (Yeah we are on the grass too!) This will be Scott, Mom and Dad’s first Dave Matthew’s Band Concert. I am excited to share this with them.  

Above all things 

If kindness is your king 

Then heaven will be yours before you reach your end

~Squirm, DMB

365 days

One year ago today was the big day, the surgery, the proctocolectomy. The day I kissed that diseased, poor excuse for a lower GI tract, good-bye. That stupid colon, it couldn’t even call itself a colon! More like a forest, a forest of giant mushrooms. Or so I have been told. I never got to see it.

In some aspects, I can’t believe it has already been an entire year! It seems like it was not that long ago I was staring intently at the ceiling of my hospital room, just wishing it all to be over with already.

Then on the other hand, it seems like that surgery must have happened in another lifetime. I look at how far I have come. I went from barely being able to walk 200 feet to doing 5.5 mi hikes in the woods with no problem.

A lot of you ask, “How are you?” Well, the short answer . . . “Good!” I’m sure you are looking for more then a one-syllable answer though. I am just living my life. I am trying hard to be as normal as I can. And I’m trying very hard not to pay too much attention to all the statistics out there about life with FAP (which is easier said then done). In the end, I just remind myself to take it one day at a time.

Also I know some of are curious to what is on deck for me. Well besides enjoying the remaining last half of summer (Where the hell did the first half go, by the way?! It was only in the 60s last week!) I have two medical appointments coming up.

1. In Mid September I have an appointment with my colorectal surgeon. Just the 1-year anniversary scoping of the j-pouch. He’ll give the j-pouch a little look-see, make sure all looks good and check for the start of any polyp growths. Technically, we shouldn’t see the start of any polyp growth in the pouch for another 4 years. However, the 2 cm area connecting the pouch to the anus is still made up of colon tissue, and that area could grow polyps anytime and needs regular monitoring.

2. I also have another upcoming visit to The Mayo Clinic. This visit will be much like the past visits, except during the Mayo visit we had removed all the polyps and we’re hoping when he looks in there this time it will still be as clean as a whistle. If it is still clean (meaning no new polyp growth) then I will not have to come back to Mayo for a few YEARS! YES YEARS! But if he does see some baby fuckers, oops I mean polyps, starting to grow he will obliterate them with his laser gun (sounds like I’m joking, right? But I’m not. Really.) That would just mean that this is a bit more aggressive then we had originally thought (um, hoped?) and we will be visiting Minnesota more often then we had planned.


Again, I invite anyone, even (gasp!) anonymous readers, to ask questions. I plan to put them aside and when I have compiled a few of them doing a FAQ post again. You can send in the question via comments or via email (new feature, see the thing below that looks like an envelope? Send your FAQ directly to me!) Try me, ask anything.  I dare you.  No wait, I double-dog-dare you.   

My name is zoom and I live on the moon. . . *

My first birthday! Man I was excited. I was pretty much this excited when I  woke up this morning too.  That was until both of the animals pounced on me and I had to quick duck for cover to avoid being wiggled and boxed to death.  You have to love my ginormous bald baby head in this picture. 

Second birthday! Now those are some healthy tree trunks, er,  legs!  ( still have not had my 1st hair cut yet) (oh and I still have those healthy legs!  yes Pup healthy!)

Third birthday at McDs!  I look so innocent!  (Note: Mom claims that I still had not had my 1st hair cut yet. )

Last night we went out to dinner at Bistro Bella Vita.  Wonderful restaurant in downtown Grand Rapids that specializes in all local food.   I will, however, be paying for my indulgences today.   I choose to order whatever I wanted last night.  So what if I knew it would make the j-pouch scream out in pain or react in protest?  I didn't care if I  had to pay the price today or not!  It was my 3oth damn-it!  

Since the food  was so good I'll let you know, First up, cocktails! I had a pomegranate martini! For an appetizer we ordered the wild mushroom and goat cheese on flatbread.  (Honestly, probably my favorite dish from the evening! And probably what I'll be paying the most for! Darn flat bread.) Main course I had the Paella.  So, good!  (Oh wait I just remembered I brought home leftovers, oh and now I just remembered I already ate all the good stuff out of the left overs!)  With the paella my waitress paired me a nice glass of white wine.  I have no idea what kind.  I'm not a big fan of white, so she did the pairing.  I wish all restaurants could do that for you.  And the dessert!  Lemon cheesecake on a pine nut crust.  Yeah I am happily paying the price today.  Completely and utterly worth it.  

*WTF is up with the title right?  Well when I was about 6 maybe, my Aunt Nancy bought my brother and I these tapes with this birthday song on it.  Every single year since then, ANdy and I have sang this song for each other.  Sorry, Scott says it is one of our odd sibling quirks. 

"My name is Zoom 
And I live on the moon 
But I came down to earth 
Just to sing you this tune
Hey, stephanie, 
It's your birthday today! 

A present for you
I wanted to find
An outerspace creature
A one of a kind! 
A wild whop or a kukelchoo,
An apple drop or a buzzardstew
Or maybe a 3-eyed tickleshay
For your birthday"

The Birthday Week

Here at the Stolen Colon house, we don’t just celebrate your birthday on the actual day; we celebrate all week long! (Don’t you wanna come live with me? Well at least for the week for your birthday day, huh?) Last weekend kicked off my thirtieth birthday week celebration. So far we have grabbed lunch at an eclectic delicatessen place that usually has way too long of a wait for Scott’s patience. (Marie Catribs, for my Gr’s peeps.) Then we spent most of the day Saturday walking around my Alma Mater, just hanging out taking some pictures (which all turned out crappy, must learn how to take better pictures in craptastic lighting) and visiting local haunts. Later we spent a few hours visiting my niece and nephew. Oh yeah, and their parents!

I know I’ve joked in the past about being a bit freaked about the approaching big three-oh. But really I’m not. Honest. I welcome this and every birthday I am blessed with from here on out. After the last year, I have new outlook on birthdays. They are a blessing, not something to dread or hide from. So on Thursday I will not cry. (You hear that Dad, unlike you I won’t cry!) I won’t moan or mope. I will cheer. I will celebrate. I will climb on my roof and shout! (ok for those of you who have actually seen me attempt to stand on a roof, know that last statement was a lie.) I will toast having made it through this past year. I will party like I am turning 30 or something.

To be honest, sometimes I do feel just a bit surprised that I am 30. I mean what ever happened to 26? Seriously did I sleep through fours years of my life or something? Did I lose them? I had assumed by the time I was 30, I would have done so much more. Finished having kids, seen the world, have had some important career. Oh well.

So I am not where I thought I would be. Hey I never thought I had cancerous bullshit growing inside me either. Life can throw you for loops; it is just all in how you roll with it.

So, what’s on deck for the rest of the three-oh weeklong celebration you ask? Well, Scott is cooking dinner all week (did you read that honey?) Except for when we go out for our fancy meal. Still haven’t decided on where for that yet. (Gr peeps, any recs? Feel free to leave them in the comments! I’m looking for local owned place, doesn’t have to be fancy.) Then we will probably head up to the cottage for the weekend.

See weeklong celebration doesn’t really mean I am super spoiled. It is just fun to say, “Buuuuut, do I have to? It my birthday week!” I mean it's not like I get gifts everyday of anything.

So, you may be asking yourself "what's with the picture of the horse hooves Steph?" Well, let me tell you. A. I took this picture over Memorial Day weekend and I like it. B. It's my birthday week!

A 1/3 life crisis?

I chopped off all my hair. Actually I didn't do it, but my awesome stylist and good friend Erin did. I had it with my hair. It just wasn't meant to be long. It was brittle and would break if it was in a pony tail. Plus it just wasn't healthy. It wasn't really growing at all either. And I was sick of the hair monster in the shower. (I know I know my hair monster is NOTHING compared to when you are on chemo. And yes I thank my lucky stars daily for that.)

Anyways, did I lop off all my hair, because it looked crappy from nutritional deficiencies through out the past year? Maybe. A Result from the stress? Perhaps.

Or was the spur of the moment cut all the hair off, a result of an impending birthday, one that ends in a 0? Ah, most likely.

So for your viewing pleasure here are a few pictures of the new do.

The Boss Man and I. And excuse the silly face, I was trying to get a good smile out of him. But the thumb won that one.

Look close and you can see Dexter Cat makes a cameo.

Anniversary of sorts

One year ago, last Wednesday was the one-year anniversary of my first colonoscopy. (And last colonoscopy, given that I no longer have a colon). It had been many years in the coming.

Before hand, the GI told me he was very confident he would not find anything. He had mentioned before hand that if in fact it was cancer, then I would already be dead. Great.

For some reason, I have a very high tolerance to the knock you out drugs they use before these procedures. (Anyone else have some LL Cool J now stuck in their heads? Or is that just me?) They tend to have a difficult time getting me out and then keeping me out. It is a common occurrence for the nurse to say “Oh my, you’re still awake?!”. This colonoscopy was no different.

I was very conscious at the start of the procedure. I was interested in watching the TV screen, where the camera that is inside you projects what it sees. I wanted to see what was going on in there too. But very early on the Dr. exclaimed “HOLY . . . OH MY . . . “ And then the nurse said “Oh dear . . .” and then blocked my view until the latest does of drugs kicked in.

When I awoke (great now I have that Phish song in my head) in the recovery room my mother-in-law, Becky was there waiting for me. Scott couldn’t be there due to his job, plus we didn’t think we were going to find anything so. . . well . . . definitive. Even though I was groggy to all get out, I knew the instant the doc walked into the room that he did in fact found something. The way he pulled up a chair, the way he looked at me, his voice. Then those pictures. He said he normally only takes 3 pictures. He took 30. You could not deny the pictures. Hundreds upon hundreds of the monstrous, ugly, things growing inside me (and man did that thought creep me out for months to come!)

Thank God Becky was there with me. At this point, my brain checked out. The doc now sounded like the teacher on Peanuts. But Becky was there, taking in everything that my brain no longer would. Thank you Becky. You have been there for me since day one of this journey!

Contrary to what previous post may have lead you to believe I am not a big prayer, only when I am scared really. I prayed before this colonoscopy, even though I don’t remember really being scared. Apprehensive maybe. I told God, I just wanted a name, a word, a reason why I had the problems I had. I didn’t want to go through the procedure and then have the doc say he still had no idea what was causing everything. I think I need to be more careful what I pray for, or maybe how I word it at least.

Moment of Grace

I was on a walk in the woods with Grace, commiserating in my bad mood. We had snuck out for a quick jaunt between rain showers. The sky was as gloomy as I felt. As we walked, the earthy pine smell infiltrated my soul and Gracie's bouncy spirit became contagious. Just then, a small break in the cloud cover allowed a stream of beautiful and much needed sunshine in, and in that same moment, a DMB song popped in to my head.

Lately I've been feeling low 

A remedy is what I'm seeking 

Take a taste of what's mellow* 

Come away to something better 

What I want is what I've not got 

But what I need is all around me 

Reaching searching never stop

-Jimi Thing

As a child I was raised Catholic. I was taught to pray to God every night. Kneeling next to my bed with my hand clasped, I'd asked this ominous being to bless all my loved ones, right down to the current favorite stuffed animal. I’d usually ask this great being for either guidance or plain help. Possibly with a fight with friends (which at time felt like a life or death situation) or an upcoming test (especially math, or for that year in 7th grade, English. That was the year a teacher told me I was an absolute horrid writer. And whatever I did to never let anyone read my writing. Because in her opinion, I was that bad.) After finishing my so-called praying I’d silently wait to hear back. Waiting for some deep booming voice to say "Stephanie . . . be nicer to your brother. Stop calling him fatty fatty two by four." Or "Stephanie . . . the answer you are seeking is . . .” Or “Stephanie . . . your English teacher doesn’t know shit.”

When I never heard back, I kind of, well, gave up on the whole trying to talk with God thing. I felt it was too one sided. Why didn’t he answer me?

As I've grown I have learned God doesn't answer in such direct pathways. I also learned, she has a bit of a sense of humor. But that is a story for another day. The sun is breaking through the clouds again. Time for Gracie and I to go get some exercise.

*Yeah, yeah, I know what your thinking. Another Dave Matthews quote?! Really, I wasn’t planning to quote DMB again. Seriously. However, I couldn’t help it for this time. I’m sorry.

**Ok so I know the normal lyric is “take a taste of what’s below” but in the version in my head, that is what I heard.

Green-eyed Monster

Someone close to me just announced some wonderful news. And I am so extremely happy for them, but deep down in a dark corner of my heart that green-eyed monster reared his ugly head. We are at the age where it seems like everyone around us is expanding their families. Every time I turn around, I am faced with someone's perfect belly bump. I want nothing more then to have a baby of my own. Before I was diagnosed with FAP, we were "trying" and upon receiving the news of my health that "trying" was put on hold.

Recently we started the information search on Pre-genetic diagnosis (PGD) and in vitro fertilization. The PGD would give pretty good odds that our child would not inherit FAP (otherwise its 50/50). However, it is not a simple process. Nor is it cheap. It is a small fortune. It is tuition to a good college!

The other night I broke down in my first "it's not fair" pity party since last June. That inner child inside me whined "I waaaant a baby!" With the help of Scott and Gracie (and 1/4 a pan of double chocolate brownies*) my pity party was short lived. Scott and Gracie always manage to make me smile no matter how blue I might be feeling.

Scott and I have some tough decisions ahead of us. But for right now I need to remember to live in the now. Worrying and feeling sorry for myself won't change anything. It is what it is.

So for the two of you who just announced your exciting news, I am so very very happy for you. Honest.

*And I wonder why I weigh more now then I did pre-surgery.

**After a bit of debate, I decided to be completely honest with my feelings.  A lot of us will feel a little sting of jealousy when some one is getting something that would love to have.  It all just comes down to how you deal with the jealousy.  I am choosing to acknowledge it, and then send it packing.  I know this subject paints me in less then perfect life.  But like you I am human, none of us are perfect. 

The Pepto Dance

While trying to decide which pictures to use on Wednesday’s post I came across this one and I decided it deserved a post all of its own.

You are probably are probably asking yourself “why does Steph have a picture of her wedding rings with pepto-bismol?” Well let me tell you.

This was before my FAP diagnosis. Back when visiting my college’s health center, where I was told my symptoms were caused by stress. Alternatively, while visiting my family health practitioner, that it was from too much spaghetti sauce. Or when I pursued some holistic answers and was informed it was because I was out of balance. Oh and I can’t forget the countless times I was asked to take a pregnancy test. Every single time I went to a doc and complained of my symptoms, I was asked, “could you possibly be pregnant?”
“No doc.”
“Are you sure?”
“Yup, I am sure.”
“Are you 100% positive that you couldn’t be pregnant?”
“There is no way I could be pregnant.”
“Well okay then . . . lets just have you take a pregnancy test to to rule that out.”

Three years ago, before I had a name to what was wrong with me, Pepto was my bff. I never left home with out it. While getting ready for my wedding, I asked my maid of honor if she would put some pepto in her purse for me. At this point, we may have had a glass or two of champagne. So naturally, we broke out into the pepto-bismol dance. ( Come on, you know  the pepto-bismol dance!) My photographer thought we were hilarious and possible a bit crazy. He ended up doing the standard “wedding rings shot” with the pepto; you know to personalize it (I guess).