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?!

The Homestretch

I just changed what I hope will be my last bag ever.  This is thrilling to me not just because the past 20 months have been hell and I loathe *almost* everything to do with this bag but because I am completely out of the bag "system" that I prefer...in that it is the only system I've found that does not result in me getting covered in shit at the most inconvenient of times (and yes, there are times that it is *more*convenient and *less* convenient to get covered in shit, I hope you never have to test this theory yourself-- just trust me on this one!) Unfortunately, it is 11:09 pm and since I am wearing a bag that I am less than confident in, I am pretty sure that even with my sleeping pill, I am not going to get much sleep tonight.  That has been the story of my life most of the past 20 months. But, hopefully by this time Thursday night, I will not have to worry about bags leaking anymore.  Now, that isn't to say I may not wind up covered in shit as my Colorectal Surgeon made sure to point out that "you will soil yourself" when she described what I could expect in adjusting to going to the bathroom the "old fashioned way" after relaying on the bag for so long.  I'm sure it won't be awesome, but I'm ready to figure it out-- I will go buy myself some depends and suck it up.

So, I am going to try to write some more tomorrow or at least upload some of the journaling I have done to use as posts over the past month or so and then I think I will post a link to Facebook after I have my surgery and know for sure that this is a done deal-- but I know that some people will actually see this post before that happens so if you've got some extra prayers or "reverse the ileostomy" vibes you can spare, I would really appreciate it.  Between my fears of this bag leaking and the surgery not actually happening, my anxiety is pretty sky high right now.  Fingers crossed!!

Never Forget the Promises You Made

When I first started this blog I did it for three reasons (not necessarily in this order):  first, I wanted to keep people posted on how my treatment was going; next, I wanted to help myself by “talking” about my journey (through hell); and AND, I wanted to serve as information/inspiration for anyone like me going through this journey (through hell).  I still remember vividly being so desperate to find anyone who “seemed” like me that had gone through this and came out ok on the other side.  I did find a few blogs out on the internet that were written by *younger* colon cancer patients.  The funny thing was that many of the blogs would document the chemo experience and a few weeks afterwards and then stop (pretty much like mine did). I forgot until I was lying in bed a few minutes ago at 5 am how frustrating that would be—like the TV getting unplugged right as you get to the end of the show to see how it *ends*.  I remember thinking—well, maybe this means no news is good news or maybe this means things didn’t go well or it came back and this person is too busy/sick/pissed/afraid of being a downer to keep writing about it.  I think most of the time it is that when you finally get to live your life again after your whole world has revolved around “having cancer” and the countless appointments, feeling like shit, and being terrified that comes with that for 6 months/a year/2 years or longer….you actually want to get out there and live.  I have spent the last 10 months or so really enjoying my family and getting back to the things I was so going to miss if I hadn’t beaten this thing.  It’s been good.  So for anyone in the real world reading this—I’m alive and I’m cancer free! 

So, in addition to giving the “I’m alive” update I wanted to resurrect this blog for the “serve as information/inspiration” part too.  I had always planned to finish the story after my PET scan and surgeries but some parts of this portion of my story are really personal and a little embarrassing—and coming from an epic over sharer, you know that means, they are personal!   Then earlier this week I read a blog of a woman who is 39 and is currently on a journey that makes mine look like a…trip to the grocery store   (walk in the park is so cliché and honestly, I should still get credit for a little bit, right??)  This woman is fighting with everything she has and is putting it all out there for everyone to see.  I’m sure that her reasons are similar to mine—I know that there must be some catharsis for her as there was (and is) for me.  But when I read her blog (most of it I read at 3 am, I could not stop opening posts) , I realized how un-authentic I was being.  I have these grand plans to help people get through the hell of this journey by telling them about my trip IF and WHEN I get out on the other side.  I know I have a right to keep my personal or embarrassing stories personal and I certainly am not going to do something that is detrimental to my own mental health simply to get my story out there but…..I need to find a balance where I can be genuine, help myself through this continuing journey AND show people that this is doable and the hell you are feeling (like I felt those first days in the hospital and when I came home, scouring the internet for someone to tell me I was going to get through this) is normal and is going to get better.  I’ve not been 100% honest and open about my journey. 

 I’ve written some other posts in Word that I planned to post after my final surgery in February but now that almost feels like a slap in the face to someone going through this fight Right Now.  Like “yeah that sucked, but now my life IS a walk in the park and I’m out on the other side, suckers!”  There is so much about colon cancer – well and the colon, in general that is sooo stigmatized, and I really wanted when I started this blog to help make it less so—not talking about my butt is what helped this disease progress as far as it did for me.  And sooo many people DIE from this disease because they don’t talk about their symptoms—because who wants to talk about poop?!  I was at a friend’s house a couple of weeks ago where we were talking about having a stomach bug—I had one years ago and admitted I had actually pooped my pants.  A friend looked at me and laughed, saying “Susan, you haven’t had enough to drink to admit that!” I responded that pooping my pants was one of the least disgusting things that I’ve had to go through since getting colon cancer.   So I’ve realized that by not being as open as I can I’m only contributing to the stigma and embarrassment that keeps people in pain, whether it be emotional from how their bodies have changed due to this disease or real physical pain because the disease progressed more than it needed to because people didn’t want to talk about their symptoms—OR they didn’t realize the risk/benefit equation that as bad as a prep for colonoscopy is, it is NOTHING compared to getting treated for colon cancer that has progressed.  So…..I am going to follow the advice of a childhood friend and cancer survivor who reminded me to “Never forget the promises you made when your future wasn’t so certain”….it’s the best advice I’ve ever gotten….and a gift really—but easier said than done!  I say it to myself daily and try to channel a little bit of where I was in June of 2012 when I was making deals with the devil to give me a little more time with my babies.  Slowly but surely I think I’m getting there and one of those promises has to be to help protect people from this disease and help others who are going through it.

So, here goes.  On June 11, 2012 I woke up from surgery hoping they had been able to save my one ovary (I knew the other one and my uterus were both coming out since they had cancer all through them), I was hoping to avoid menopause at the ripe old age of 39.  When I asked Wes if they were able to save it, I could tell from his expression when he shook his head “no” that menopause was the least of my worries.  I had woken up with a colostomy bag….something I was told I would NOT need, so it was something I really knew nothing about.  A year and a half later I know A LOT about it—most of it bad, but….not nearly as bad as it was those first few days.  Wow, there it is.  Still am not sure if I have the balls to actually click “post” but it is in print and I think I am ready to put it out there.  I think I’ll stop here for now….giving the ins and out of the bag will be a whole other post in itself.  But for anyone else who woke up recently from surgery with a bag—I’m still here—those first few days, I wasn’t sure I wanted to be.  I wasn’t suicidal but my new reality really made me not too interested in living—it sounds sooo freaking morbid and almost ridiculous now to say that because (I still have the bag, ugh) my life IS good—I thought I was a freak and would never be able to live “like that”—but life goes on and you adjust, so hang in there, it will get better—I promise!!