Of Course The Toilet Won't Flush

Worst nightmare, right?  On day 12, I had a serious um....situation after lunch during an all day leadership retreat.  And one of my new co-workers walked in as I was leaving. I think I'll just leave it at that.

What Will I Screw Up Tomorrow?

I was prepared for some of the stress of starting a new job.  Everyone always talks about how it is one of the most stressful things that happens in life.  I assumed I would have a fairly large learning curve and it would take a while for it to feel familiar.  I was not prepared for how stupid I would become due to the stress.  In my effort to learn 458,596 new things associated with the job, I have completely forgotten how to do normal things that I would have been competent enough to navigate before starting this job.  In the past 2+ weeks I have done screwed something up just about every single day I have worked.

Day 1
Killed It.  Showed up for orientation and managed to take a decent ID picture (I did forget one form that at the time felt like an enormous failure-- but that was before I realized exactly how much more stupid I could become).

Day 2
Missed several turns driving in, making my commute 25 minutes longer than it needed to be.  Sort of to be expected.

Day 3
My car got towed and I was too afraid of a giant opossum I saw on the road I had to walk down to get it so I got an Uber to drive me a 1/2 mile.

Day 5
After the huge success of not screwing things up on Day 4, I thought the dumb phase was behind me, until I got on the wrong train home and ended up having to call another Uber (my 6th that day alone) to get me to dinner that night.

Day 8
Drove the wrong way down a one way street.

Day 9
Wore my workout clothes to work in hopes of hitting the gym and realized I had left my suit to change into at home....had to metro home and back all by 9 am.

Day 10
Forgot to put any makeup on....which is hardly a mistake compared to half of the other things I did.

We'll see how Day 11 goes tomorrow. Pray for me.

I'm Back!!

Not sure if anyone still follows this or not, but I desperately need an outlet and I figured blogging helped me so much before, I might as well give it another shot.  I just started a new job after 10 years at the same place and...it is stressing.me.out!  So, for now I need to get these feelings out and document the lunacy I've already committed so one day I can (hopefully) look back and see how far I've come.  At that point it might also serve to help someone else, who knows.  So.....no time to write more now since my 14 mile commute in the rain just took 60 minutes, but I will write more tonight.

Oh, and by the way-- still cancer free, yay!! 

It Happened, It Really Happened!!!!

I am writing this post from my hospital bed.....without a bag attached to me!  Wait a minute, let me double check......yes, no bag down there.  I'm on a nice little dose of dilaudid so I wanted to be sure.   It really hasn't hit me yet....just like how the *real* reality of what having the bag attached didn't really hit me until I went home and had to live with it.....so, we'll have to see how I feel when I'm actually sitting on a toilet other than to pee again.  I have been reminded that I will absolutely poop myself so....the nurses are surely going to love me and I suppose the area I am currently using to store bags will now be used for Depends but....I'm cool with that. Physically I feel good and it seems I may get to go home as early as Saturday.  We'll see.  I have a 3x4(?) bandage and drain where the stoma used to be.  It doesn't hurt really, but my abdominal muscles feel like I did 1,000 crunches yesterday- which I may have done cumulatively during the course of my 41 years.   For anyone who actually reads this,you'll  see the last several posts are written in weird order.  I held on to some to post after the surgery was done, which I explain in one of the posts.  You may want to start at the Never Forget the Promises You Made post and read up.

I will post some updates to help people know what to expect after a colostomy (I could really only find horror stories about constantly carping oneself, but I think there are probably people out there who do pretty well and just don't frequent message boards to talk about it).

As for now, I am super excited about my post colostomy life.  I know that it won't fix all of my issues (I'm still a terrible Parker and I can't sing for shit) but it is going to decrease my anxiety, increase my confidence and I hope I will look at thie inevitable scar and use those memories to really change my perspective on where I've been and where I'm going.  First order of business is to thank my husband, Wes, who put up with me even when my self esteem was in the toilet, my anxiety through the roof and my self pity was so thick you could choke on it.  To someone who hasn't been through this, maybe it seems dramatic (and maybe it is anyway.....but this thing really did screw up our life for almost two years).  I love you to the moon and back and look so forward to what is to come for us.  I also want to thank our families, especially our moms....they put up with me too and helped in so many other ways, and my friends.  I have a handful of friends who have known about the colostomy and have never been anything but compassionate and helpful.....which sometimes meant knowing when I really just needed a hug in the middle of a public bathroom when I would never have asked for one on my own.  Much love to all of you!

Beauty and the Beast.....and I'm the Beast

As I mentioned earlier, I took Garrison to see Beauty and the Beast in Philadelphia ffor an overnight trip.  It wasn't playing near us and Garrison LOVES it so several months ago when I learned tickets were going on sale for Philly, I jumped on it.  One of my best friends, Heather, and her daughter , Erin, who is one of Garrison's best friends came with us.  Thanks to Heather's husband we were able to use points to take the train instead of driving, which at the time seemed generous and helpful so we wouldn't have to drive in questionnable weather and Thanksgiving traffic but knowing what I know now was one of the biggest blessings ever.  

We got to Philly with no incident and actually made it through dinner and the play fairly easily also.  I was an anxious mess and went to the bathroom a ton to check for leaks and to change the bag when it got full ( whih is about every two hours).  My anxiety and preoccupation with the bag decreased my enjoyment of spending the evening with a great friend and two of the most excited, beautiful Belle's you'd ever see-- but it was still really a great night.  We shared a hotel room and Heather & Erin were incredibly awesome about how much time I spent in the bathroom and what I am sure was not a great odor (Garrison has gotten completely used to me "changing my bandage").  Unfortunately, by the next morning, my luck had changed.  Probably due to really not having the right type of bag yet and exacerbated by what I ate at dinner the night before (I'm not sure what the culprit was but my output had changed and made me uber susceptible to leaks....and leak I did.  I leaked and had to change my bag aboutt 10 times oer the course of the next 6 hours or so of checking out, going to a museum and getting on the train arriving to Union Station.  Thank God for Heather.  I do not know what I would have done if I was with Garrison alone. I would have had to bring her into a 3X3 stall at union station while I used baby wipes to wipe shit from half way down my legs, throw out my underwear and luckily change into a spare pair of leggings I had in my purse (unfortunately, the bag leaked again while on the metro back to our house and I just had to suck it up then).  Heather would entertain both kids in a chaotic station and was such a wonderful, supportive friend when I would come out crying humiliated and defeated.

When I finally got home, I tried a different type of bag (a two piece convex system) that actually worked a bit.  It was by no means perfect but I could get through a day wihtout a leak (usually).  The catch there is making sure I had enough supplies and since I really went through them fast and you have to order them to be sent and you need your doctor to approve each purchase, I sometimes ran out and got stuck without the exact supplies I needed resulting in me needing to use something that wasn't as good and causing me trouble.

530 Days Down, 46 to Go

I’m writing this post in word on November 24, 2013.  I don’t dare post it publicly for fear of jinxing it and….because it is still too embarrassing.  Not as much so as it was 530 days ago—not by a long shot but still, I’ll feel more comfortable going public with this part of the story when it is in the past.  I need to go public because 530, well, maybe 520 days ago, I combed the internet looking for stories like this.  The ones where a 39 year old gets colon cancer and a colostomy and lived to tell about it….meaning the cancer went away and so did the colostomy.  I wasn’t suicidal, but I sure as hell did not want to live and I needed to hear from someone that it was going to be ok.  There weren't too many stories like mine, but there were a few and now it is time to fisnish telling mine.

On June 11, 2012 I had a colon resection to remove a T4 tumor from my colon (and uterus, ovaries, etc) Prior to surgery I was told they would try to keep one of my ovaries so I wouldn’t enter total menopause and that I would not need a colostomy (whatever that was).  I woke up and the first thing I asked my husband (still completely doped up and in unbelievable pain at the same time) was“were they able to save my ovary?”.  I’ll never forget the look on his face.  So incredibly guilt ridden that he didn’t have good news for me.  I was sad, I was afraid of menopause; what it would mean for my body, hormones, sex life, etc.  But, it wasn’t the end of the world.  I was surprised he was so sensitive about how he conveyed the bad news.  Until I realized that the guilty face wasn’t so much about what they took as it was about what they added.  They were unable to avoid the colostomy.  Warning:  This is where it gets pretty gross and somewhat graphic.  As I pulled down my blanket and pulled up my hospital gown I saw a clear plastic “bag”secured wiht a strong adhesive to the left side of my belly button.  Through the clear plastic I could see what I later would realize was a new “rectum” sticking out of my belly.  It was about 2 inches in diameter and protruded out of my belly by at least an inch.  It was horrific.  Looking at it made me sick to my stomach.  I hated the sight of it and I hated myself with it sticking out of me.  I instantly considered myself a complete freak.

Here I was recovering from cancer surgery and I still didn’t even know what stage I had or if I’d live or die, but that was only slightly more awful to me than what was going on with my colostomy.  Doctors would come in and say “oh, you’ve got great bowel sounds” and when it actually started working, nurses would come and empty this bag hanging off my belly into a plastic cup.  It was absolutely repulsive.  I felt so humiliated, even though no one ever made me feel ashamed about it, but it was such a new and humbling experience for someone to go through.  

After I got released,  Ostomy nurses came to visit me a few times a week for about 3 weeks.  They helped me change my bag  and taught me to do it on my own.  In time the opening did shrink a bit and I found some supplies that made the experience slightly less terrible.  For one thing, I ordered bags that were not see through so I didn’t feel so ashamed getting undressed in front of Wes and I could let Garrison come into the bathroom with me without giving her nightmares or having all sorts of embarrassing questions.  I told her it was a bandage for a “bad boo boo” I had, and in a way  I guess it was true.  I also switched from “drainable” bags to one piece, closed pouches.  If you are one of my friends reading this—you don’t know or really need to know what I’m talking about but if you are like I was 520 days ago, looking for something to make you hate your new life as an “ostomate” less, I will tell you that the drainables were hell.  The main reason I changed was the um, consistency made it sort of impossible to drain it (drainables are basically a bag that you either clip closed or use this Velcro type closure and when it is full, you open it up and empty it into the toilet) it sort of sounds like an easy enough endeavor but in reality it sucked.  It always splashed up and as I mentioned above, if it is too thick, well, it is just a real pain in the ass.  The first time I went out in public was the day of the Derecho where most of DC had no power and everyone in the metro area was at Tysons Corner charging their phones and trying to eat.  It was 105 degrees outside and I had been to the ER just two days before for severe dehydration and we had an 8 week old so we had no choice.  While we were at lunch, I went into the bathroom at Slades and emptied the bag into the toilet.  The smell and noise were a pretty instant give away, but I was so sick I didn’t care.  There was a line waiting for a stall when I got out and the woman who was next walked in the stall turned right around and left, making some disgusted comment.  I washed my hands and went back to my table.  This was my new reality.  I was a freak who ruined bathrooms.

So, I switched to closed pouches.  That way you could at least just take the bag off and put it in another plastic bag and throw it away.  Throughout the year and a half I had my colostomy I tried lots of different products but usually used the one piece (except when I was doing chemo or radiation and would have bad diarrhea and then I used two piece closed pouches since that was easier on my skin).  One piece bags (well, all bags, really) work by using a heavy duty adhesive to keep the bag in place around the stoma (the new rectum is called a stoma).  A one piece bag should be changed about every 24 hours.  More often than that and it can irritate your skin, less frequently and you run the risk of the adhesive breaking down and getting a leak.  Two piece bags (and the drainable bags) are designed to be changed every 3-5 days.  They are much stronger and therefore much harder on the skin if you change them too frequently.  With a two piece, the bag actually adheres either through another adhesive or with a clip system to the main appliance. 

Needless to say, as time went on, I learned to accept my new reality, but I still usually hated it.  I was happy to not be chained to the toilet when chemo or radiation made me shit my brains out, and there was a (very small) part of me who appreciated not ever needing to take time out of my day to um, got #2... much less in public—even though I basicallywent #2 in public all the time with the colostomy.  It was a little funny when I could joke to people who knew my situation that I was “shitting my pants right now”.  But often the bag didn’t work the way it should, or should I say my bowels didn’t work the way they should, which should be no surprise since they were the reason I was in this mess to begin with.  Basically I had big issues with leaks.  I won’t go into the detail but there were times that I would be in a meeting and I could tell the bag had just come off and I could instantly smell shit.  It was awful.  I had to change the bag much more frequently than was preferable and my skin was a mess from it.  My confidence was at rock bottom and I was constantly trying to figure out bathroom logistics at every off site meeting or social situation I was in.  You’d be amazed how many bathrooms have no paper towels for example, going green really screws with an ostomate with a leaking bag.  Ideally, you’d have access to a sink to change your bag, but most bathrooms only have stalls and very little space to work with all the products I needed to lay out.  I’d be lying if I said I hadn’t changed many a bag in my car, praying someone doesn’t walk up to my window and think I’m some freaky pervert with my pants unzipped and a big bag of poop.  Anyone who knows me in real life has undoubtedly seen the enormous purse I haul around so I can accomodate my countless supplies including bags, scissors (to cut the bags to the right size) paste (to help the bags adhere better), diposable "diaper bags" (so I could put my bag in them and try to contain the odor when I threw them out), paper towels and baby wipes.   

I dreamt of the day I could get it reversed.  I’d been promised I could do it after chemo.  Then I was told I’d need 5 weeks of radiation—ok, a slight delay.  Then I couldn’t do it until my PET scan and that couldn’t be done until 8 weeks after radiation.  Finally I saw my surgeon in April hoping to get on the schedule.  She recommended I wait for a second PET scan.  I lost it.  It was almost a year since I had gotten it and now she wanted me to wait at least another three months, “in case it (the cancer) came back”.  I don’t know if I was more upset about waiting longer or the notion that it would come back.  I hated her.  I felt like she lied to me about needing it in the first place and now she was making me keep it.  Then I just said fuck it.  I figured I’d enjoy my summer with my kids since the last summer had pretty royally sucked.  I’d get another scan and get it reversed in the fall.  I got a colonoscopy in July and she actually told me that was all she needed and to call her in the fall to get on the schedule.  So in October I called her and went in for my consult.  She asked me if I had named my stoma—I had read on various blogs about people doing this—seemed ridiculous to me.  Why would I name something I hated, like it’s a pet or a baby or something?  Hell no.  I just want it gone.  “Yeah”, she said, “I’ve got some news that’s not going to make you happy.  You’re going to need two surgeries”.  No.  No fucking way.  She did it to me again.

Apparently the colostomy needed to be turned into a loop ileostomy before it could be totally reversed.  Apparently it is not unheard of to do it this way—but it was a huge f-ing surprise to me.  I knew ileostomies were a lot more “watery” than colostomies so I expected it to be easier to deal with than my colostomy and the plan is 8 weeks after surgery I can get it totally reversed….I’m planning on January 9, which is where I come up with 46 more days….I had no idea this would be so long and I’m pooped—again, no pun intended.  So I’ll fill you in on the joys of an ileostomy next time.  Of course, I will probably post all of this at once, so it will be like catching up on Netflix ; )  

November 25, 2013

First Day Back at Work

I went back to work today.  Technically I worked a few hours on Friday but I did it from home so it really doesn’t count.  As of this writing I have not yet gone into the details of my ileostomy—maybe I’ll write a “pre-quel” post to this or maybe I’ll just let this post do the describing for me.   Basically I shit my pants today and had to go commando while breaking our “no jeans” rule at work today (thank goodness I had a spare pair of jeans in my car….)  So yeah, that sucked.  Long story short, my bag leaked and I got shit all over myself.  I just don’t have good luck with either ostomy—leaky bags are the story of my life.  If they weren’t I might not have hated this situation as much as I do—but I can’t go through life like this.  My skin is peeling off where the stool has burned it from the leaks.  It sucks.  It is the worst kind of burning, itching, pain I have ever experienced.  But the anxiety about needing to go anywhere and how I will navigate the bag issues trumps it 100%.  I am taking Garrison to Philadelphia tomorrow to see Beauty and the Beast…..I really hope nothing tragic happens.  We are taking the train so that should help in case I need to use the restroom en route—but I really can’t imagine trying to change my bag in a train bathroom.  I think I might just try to OD on immodium.  Not sure.

1:45 am Update

Well, that bag didn't work. Let's try the hollister.  Ugh.  Have I mentioned that I'm ready to get rid of this thing?!