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?!

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!!

23 Down, 2 to Go.

I finish my last radiation treatment on Friday-- yay!!  Overall, radiation has not been bad, other than a few GI issues and being tired, it's just been an inconvenience where I have to get out of the house earlier than usual.  But I will not miss it one bit. I continue to be annoyed by the clear difference in bedside manner between the male techs and females....and I don't know why they don't mix it up.  Where I work, we always try to have a male and a female on the shift because we serve men and women at our shelters.  We know that there are some issues that a man or a woman are going to feel more comfortable bringing to a person who shares their gender.  Also, it is a lot more comfortable to have a woman do the inspections of the females rooms/dorms than to have a man do it.  At radiation, there are two rooms and two sets of techs and it is almost always two women for one room and two men for the other, why don't they do one of each?  I'm laying there with a g-d pillow case covering the lower half of my body...I get they can't always match people by gender 100% of the time but if they had mixed gender teams, it would possibly make patients feel a little more comfortable....and frankly, they might decrease their risk of having any false allegations brought against staff....maybe my line of work makes me go there un-necessarily and the rest of the world doesn't work that way, but I think it is always a good idea to minimize risk.  It's interesting to me that this bothers me so much-- I went through 3 years of fertility treatments where I had male doctors being much more "up in my business" than in radiation and it was never an issue but, for some reason it annoys me now.

Anyway....I tried to schedule my PET scan this week and ran into a bit of an issue.  Apparently you can't have a PET scan done until 6-8 weeks after radiation is done due to the inflammation.  This really screws with the time line I have in my head of when I can close the book on this stinking nightmare.  My doctor ordered a CT scan for me instead and "feels confident" that will be enough.  I was reminded by the nurse that my doctor is "very cautious" so I can trust him on this.  To which I reminded her that I have already had a clear CT scan in July (the week before I started chemo) and I need more reassurance.  Frankly, if all they needed was a clear ct scan to tell me I'm cancer free, why the F did I go through 6 months of hell with chemo followed by more chemo and radiation??  So....I told her I needed to think about it but I'm pretty sure I'm going to wait for the PET scan.  I am hoping that I can still meet with the colorectal surgeon and get my re-section surgery scheduled without much delay (you can't have the surgery until 6 weeks after radiation either).  Basically I hope I can have the surgery scheduled for the end of April and have my PET scan in the middle of April....hopefully it will be all clear and we can proceed with the surgery.  If it isn't all clear, we obviously just cancel the surgery.  But who knows if my surgeon will go for that.  In the meantime, I am going to try to schedule a family vacation.  I am in desperate need of some warm weather and a break, plus it will help us focus on something else other than the what if's of the PET scan.

So that's all for now.  It may be several weeks before I have any other news to share and hopefully that will be good news!

Radiation 101

As of tomorrow I will be half way done with radiation-- yay!!  So, I figured I'd do a quick post outlining the details of how it works (well, I don't know how radiation works, but I will detail the process  for me to get radiation). 

First and foremost, I feel pretty good.  Effects are supposed to be culmulative so I guess it could still go downhill, but it can['t go downhill for too long since I'm almost done.

So, every Monday through Friday I leave my house at about 6:55 for Fairfax Hospital where I have a standing 7:15 appointment.  Radiation patients get a special parking space in the garage (not really sure why, but I'm not going to complain) which still feels painfully far away from the building since it has been so cold and there seems to be a bit of a wind tunnel created between the hospital and the garage.  I take the elevator down to the basement and sign in on the computer at the front desk.  Usually before I can even find an article to read in one of the hundreds of magazines they have, they call me back to get changed.  I point out the number of magazines because I find it ironic that at the Oncologist office where I usually had to wait for about 30 minutes each time I went, they had like 4 magazines, none of which are as fun as the ones at the radiation office where I never wait.  Anyway, I put my magazine down and walk over to where the changing rooms are and begin the ritual of knocking on the doors and opening them to see if anyone or anyone's clothes are already in them.  I almost never find an empty room until the 4th and last door-- perhaps I will just begin there tomorrow.  Writing this blog helps me see things that never would occur to me normally...So, I get changed, which means taking off everything below the waist (but keep on my socks and shoes) and put on a gown and go to the next waiting room (which has no magazines or cell phone reception) and wait.  Usually I'm alone but sometimes there is this other guy in there, also with no pants on but dress socks pulled up to his knees.  We wait, while two women leave the radiation area to head back to change.  They both have pants on but no shirts under their gowns.  Then a radiation therapist comes into the waiting room and instructs us to go back.  Dressy knee high socks guy usually goes to the right and I usually go the left.  When I get to the radiation station I need to tell them my name, date of birth and what area they are treating.  At this point I also find out who my two therapists are that day.  It is almost never the same exact team two days in a row.  I always hope I will get women but usually I get two guys.  I prefer women because 1) I have to lay on the table with nothing on from the waist down and 2) and more importantly to me, because the men NEVER offer me a blanket and it is freezing in the room.  The women always get me warm blankets, usually without asking.  I lay down on the table and the two therapists begin shimying me around to get me lined up.  This process usually lasts for about 5 minutes and includes them pulling the sheet I'm laying on one way and then the other until they get it right.  Somewhat humiliating while you are laying there commando.  Then they leave the room and the big radiation arm rotates around me a few times shooting radiation in me and taking pictures for about 4 minutes and then I'm done. So yes, the shimying process lasts longer than the actual radiation.  Most days of the week I just go back and change and leave.  On Thursdays I see the doctor and sometimes they want me to see a dietition or social worker on other days. Basically they are all just checking in to see if I'm tolerating radiation ok (yes), maintaining my weight (yes and then some, unfortunately) and if I'm holding it all together mentally (usually). 

So that is my radiation experience so far in a nutshell.  Well, it is pretty detailed I guess, but there just isn't really that much to it.  Like I've said, I feel pretty good.  Getting a little more tired these days but nothing like with chemo...and I partially have to blame getting up so early and my sweet Brooksie boy who likes to see us overnight for some of that.

More to come soon....

Much Ado About Nothing

Well, radiation is a breeze.  I realize the effects will be cumulative so I will probably be singing a different tune in a couple of days or weeks but-- so far, so good.  I was on the table for about 7 minutes.  Easy peasy.  I do have some lower back (kidney?) pain, but I think that is from the chemo or residuals from having the stomach bug this weekend....or a combo of the two. 

The chemo pills are enormous and I am worried about keeping them down after this stuff starts to build up as I have a terrible gag reflex.  But, we'll see.

I do have to take a second to bitch about my neuropathy.  My fingers and feet are so numb and it almost seems to be getting worse the further away I get from taking the Oxaliplatin that caused it to begin with.  My oncologist said he hears that a lot but has a theory that people just think it is getting worse because the other symptoms get so much better.  I think that is bullshit and people know when something is getting worse.  It is so difficult to type or write and forget about doing something intricate like closing a Ziploc bag or trying to work a clasp on one of Garrison's 47 necklaces.  Don't get me wrong, I will take this all day, every day over a lot of the other side effects I had...but it still stinks.

So that's all for now.

The Good, the Bad, and the Funny

I am starting radiation tomorrow!  While I'm nervous, I know I can't finish until I start so I am excited to get this show on the road.  During my final consultation on Friday there were some positives, a few negatives and one down right funny moment. 

First, the Good:  Apparently you burn extra calories while doing radiation.  Yes! I'm skeptical but wouldn't that be awesome!?!  My nurse was adamant about me needing to keep my calories up....no problem!  Well, hopefully it won't be a problem (see the bad). 

I will go in every morning, Monday-Friday at 7:15 for five weeks.  I'm really happy I got an early appointment time so I won't have to miss work.  It lasts about 20-30 minutes.  I'm hoping I'll be disciplined enough to keep up with using the treadmill every morning at 5:30 (more calories!).

The Bad:  This is going to be expensive.  I mean, in the grand scheme of things, I have very good insurance and I know it could be so much worse,  but those co-pays are going to add up fast when I'm going every day. 

The other bad part is the side effects.  Sounds like I could have some significant pain and since there are a lot of "high functioning" areas where they will be doing the radiation...some of my...um bodily functions could be affected.  Of course, there is the ever present promise of diarrhea, so that will be fun.  But, like I've said before, it is 5 weeks and I can do anything for 5 weeks. 

The Funny:  This part wasn't so funny at first but now it cracks me up.  When I went for my consult on Friday the nurse started explaining what I could expect in terms of side effects.  She said the first week would be ok but somewhere during the second week my breast would start to look very sunburned.  HUH? I said, "that's weird, why would my breast look sunburned?"  She said, "because that is where the radiation is going for your breast cancer" HUH?  "Um, I don't have breast cancer" (or do you know something I don't know??).  She says "Ooops!  What kind of cancer do you have?"  "Colon"...."oh, well then you are going to have a lot more side effects...let me get my paperwork on that!"  Good grief!  Luckily the radiation technicians had already done their job and they no where the radiation is going.


So that's all for now.  I'll update again soon.

Big Ben, Parliament.

I had planned on posting a jubilant piece about how I wasn't doing chemo today, but it turns out that chemo is the gift that keeps on giving. And there is no gift receipt. I had my post-chemo follow up today where I found out I needed to do "low dose" chemo while I am doing radiation. So....I'm not done with chemo after all. I am sure you all are as sick of my doom and gloom posts as I am but I am seriously bummed that I am not done. Chemo seriously sucks....and while this "low dose" means I take a pill twice a day instead of needing to go to the lab all day once every two weeks, I have heard that the pill form actually has more side effects than Iv chemo....and that does not appeal to me at all.

The good news is that it is only five weeks and I can do anything for five weeks. Hopefully that will be it and THEN I can move on, but I'm so tired of my finish line constantly moving backwards. And did I mention that I hate chemo? I'm feeling pretty good right now but the neuropathy in my fingers and feet is really bad. My feet are so numb that I sometimes miss my footing and almost trip. This afternoon, I finally ate it on the drive way and scratched up my hand and leg pretty bad. I don't believe the new meds will make that worse but there's a slew of other side effects to get used to.

So.....that's the update. I meet with the radiation oncologist tomorrow and should get to start radiation the week of the 21st.

The Final Countdown ....

Da da Da da, dadadadada

I am hooked up to my chemo drip for (hopefully) the last time ever. I was warned it might be a little strange when I went for my last session and, well, it was.  We'll see how Friday goes since that is really my last day but I think the bottom line is that I am not going to feel done or *free* or less terrified until I see that PET scan and unfortunately, I may have a while before I can do that.  Don't get me wrong, life "chemo free" is going to bring me a great deal of happiness.  I am going to feel like I have so much more energy and time on my hands.  I'm really looking forward to using that time and energy wisely. 

I am fully expecting the PET scan to come back clear, but sometimes there is a voice in my head that spews statistics (which is really weird when you consider how bad I was at statistics in college)  and the fear comes back.  I get scared that decreasing my dose of chemo will make it not all be gone.  What if I wasn't strong enough to handle the amount of medicine I needed to fight this thing??  Some people might say this type of thinking in not productive and I agree that blaming myself is not fair....but I do feel like I need to prepare myself for the fact that there is a chance I will not be "NED" (no evidence of disease).  Hopefully that won't happen and I never have to see that freaking chemo lab or the truly wonderful people who work there and get treated there ever again.   As I've said from the beginning, I haven't really had a choice to do chemo, work full time, raise kids, be a wife, etc. so I'm not necessarily proud of "accomplishing" anything....believe me, if I wasn't scared of dying, I would have quit chemo at session 8. But I am still generally happy to have made it to the end.  And I think I did it with some grace and dignity, whcn I was feeling up to it ; )  Luckily last session was decent.  Unfortunately, I feel kind of crummy already this time around.  Guess that is the crapshoot that is chemo.

So at this time on Friday, I will be done.  Hopefully I will feel ok, but even if I don't, I know it will be the last time I have to feel like that so I will suck it up.  I will probably update after the weekend again and then I'll be back when radiation is about to start.

Hope everyone had a Merry Christmas!!

One More to Go!!!

I honestly can't believe I'm almost done with chemo. It's hard to explain as on the one hand, I had less than six months of chemo to do and I think we've all experienced how quickly six months can go. On the other hand, I had 12 cycles of chemo and got pretty sick, run down, in pain with almost every one, which made it feel like I would never get through. Cycles 9 and 10 were so hard I was seriously taking anxiety meds in preparation for number 11....and then.....nothing. This was possibly the easiest cycle I've had, including the first one and side effects are definitely supposed to be cumulative. I have no idea why I didn't have migraines, vomiting, debilitating exhaustion, though the neurotic in me is of course worried they didn't give me the right meds or dose. They show me everything they give me, but how do I know there wasn't some Kramer-esque mix up in the lab and I wound up with dextrose instead of 5-fu or Oxi. Yes, one of my chemo drugs is called 5- fu. I find it appropriate. Sometimes while I'm hurling into my trash can I find myself saying F U, fu. Not really but, I could say that. But now I only have one more opportunity to say that!! Of course, after this last cycle I'm hoping for another easy go of it, but if I need to take one on the chin and go out with a blaze of chemo induced glory then that is what I'll do. I've got a med cabinet full of anti-nausea meds that need to be used up before they expire. Bring it!

Alas I won't be completely done when I get disconnected on the 28th. I go in for my pre-radiation appointment on the 10th and then I should start radiation about two weeks after that. I will go in 5 days a week for 5 weeks but should be able to work and the side effects (if not the risks) are much less than chemo. I'm disappointed that my finish line has been pushed back, but I know I have to do everything I can to beat this thing...so...I'm doing radiation.

Hope everyone is having a happy and healthy holiday season.

Some Perspective

I'm sitting in the chemo lab getting IV fluids, like I do each Friday after chemo, and watching the most horrific thing I've seen in years. A shooting at a Connecticut Elementary school where at least 18 children, most likely kindergardners have been killed. I feel sick to my stomach when I think of what they went through. I want to go grab Garrison and never let her out of my sight.

I was all set to post about me and how chemo is going but, screw me. Chemo is fine (it actually seems to be taking it easy on me this time), but cancer seems like such small potatoes when you compare it to losing your baby. I pray these families can find peace, I have no idea how you go on. I suppose if you have other children, you go on for them but I can't fathom the pain....and I think I know a bit about pain.

Top Ten Things I Can't Wait To Do

Now that I'm (hopefully) in the homestretch, I've been thinking of all things I can't wait to do once this hell is over. Some things I haven't been able to do due to the "condition" of my colon, some because of chemo, and some simply because I feel like crap. Hopefully these factors will all be history soon. So, here is the list:

10. Get organized. I am so exhausted and between work, doctor appointments and two kids I simply haven't had the time or energy to keep up with organizing the kids clothes or food, etc. Wes does a ton to help out but being organized is not one of his strengths and I feel like we are constantly wasting time looking for stuff. I can't wait until I can stay up past 8 pm and put some systems in place.

9. Exercise. Same reasons as above, zero energy and zero time. I've lost about 70 pounds since April but I think much of it was muscle. Also, after I'm done with chemo I won't be spending 10 days of each month too sick to eat so I need to start exercising so I don't gain it all back. I have no intentions of doing anything rigorous, I've run my marathons and biked my centuries, I'll be happy to just get 30 minutes walking on the treadmill and some weights each morning.

8. Eat mango. I tried that a couple of months ago and I seriously thought I was going to need to go to the ER. There are other fruits I miss too but mango is the big one.

7. Eat salad. Supposedly I can do this now, but I'm afraid (see above). I have had lettuce and tomato in small doses but I worry a whole salad would um, cause problems. And I've made it this far so...better safe than sorry.

6. Eat cashews and popcorn. These are a total no-no. It's one of those things that I really didn't think I'd care about but when you smell that popcorn, you want to get a handful, and I can't. So, yeah, I will be indulging in some of that in 2013.

5. Drink alcohol. I've had a drink here and there but it just doesn't really appeal to me. I want to go have 3-4 glasses of wine with some friends or a few beers with my husband. I guess number 5 should really say "get a little drunk"...it's been a rough year, I deserve it.

4. Go clothes shopping. I've lost all this weight but there is a part of me that is scared I will gain some back so I haven't bought much in the way of new clothes. Most of my pants are way too big and I walk around holding and pulling them up. I just want to prove to myself that I can maintain this weight for a few weeks after chemo before I start spending money on a whole new wardrobe.

3. Get to know Brooks. And have him get to know me. My mom, Rozanne, and Wes take care of him so much more than I do....sometimes I don't feel like his mom. Most of it has to do with my energy level but I think there is some sub-conscious stuff there too. Sometimes I'm still afraid I might die and I think I've kept myself at a distance from bonding too much so he wouldn't know the difference if suddenly I wasn't here. I'm not sure people not in my shoes will get that, but...whatever.

2. Doing a better job at work. My job is pretty stressful as it is but trying to do it in about 65-70 hours a pay period is super stressful. My staff have taken several things off my plate, which stresses me out more but I still don't get it all done and I have lots of guilt. Part of the reason I am blogging at 5:30 am is because I can't sleep because I'm stressed about work. So I'm looking forward to being full time again and getting rid of my chemo brain so I can be a good employee.

1. Getting s pedicure! It's been 5 months...'nuff said.

Four weeks and two days left!

9 down, 3 to go!!

Well, almost anyway. I'm in the chair (sweating my ass off) as I type this.  I have about 45 minutes left.  They actually decreased my dosage last cycle since I had been having such a rough time so that makes my time in the chair a little shorter and it made me feel a *little* better in between cycles this time. Well, considering how sick I had been after cycles 6 and 7, I guess I was a lot better, but it's still chemo and I still had some crummy days, but overall, it's better.

Obviously it's a little bittersweet to have my dose reduced since I really wanted to throw everything I could at this thing.  I do not want to see cancer on my PET scan when this is all over and if I do, I know I'll wonder if I was stronger and could have tolerated the full dose, if the cancer would have been totally gone.  But, I know that is not healthy thinking so I have to just push that out of my mind and focus on the fact that staying healthy in between cycles is probably just as critical to me beating cancer.  The sicker I get, the better chance I have of having to postpone a cycle or quit all together so, it is what it is.

On a related note, my oncologist told me he didn't actually think I needed radiation after this.  If that is the case, that means I really could be totally done with treatment in 2012 and fully move on in 2013.  I start to tear up thinking about that!!  He suggested I discuss it further with a radiation oncologist, but he didn' think that my particular case would require/benefit more from radiation.  He added that since I had such a rough time with chemo, he really felt it wasn't worth it.  Studies haven't shown there to be much benefit to radiation in cases similar to mine.  But, I will get the second opinion to be sure.  Obviously I want to be done as soon as possible but most importantly, I want to be done and not have to ever come back (well, except for my yearly "you still don't have any cancer" appointments).  

I feel like there is a lot more I wanted to write about since I haven't felt well in so long.  But....that's all I've got for now.  Maybe I'll come up with more later.

Three more to go!!

I am not a Wimp!

Repeat until I believe it. I have run two marathons but this chemo is killing me...hopefully not literally. I have been stuck in bed and sick as a dog all weekend. I think I'm a victim of the perfect storm trifecta, a bad reaction to my flu shot Tuesday plus a bad reaction to chemo on Wednesday and a cold from hell. The good news is that I'm not going to feel fat when I turn 40 this week.

Ugh, I hate to have this blog be filled with me bitching. I really wanted it to serve as inspiration for others and not to scare you but this is getting hard. I hate that i know other people who have handled this treatment much more gracefully than me. I'm actually considering going back on disability at least part time. I think working full time is just too much for me right now. I wanted to be a rockstar but I just don't have it in me. Maybe I'll feel differently when I finally feel better and can eat something but the past month hasn't given me much of a break so I'm not too sure. I know I will feel better when I'm done but that seems like such a long haul with how I feel right now. It really does remind me of the Marine Corps marathon when you reach the 14th street bridge (and realize how steep it is) and you want to quit...but you know Crystal City is right around the corner and it is FLAT! I just need to keep running....or at least walking.

In an effort to not be a total Debbie Downer, I'm going to be 40 on Tuesday. There was a period in June when I wasn't sure I would see 40, so that's a good thing. Other than having cancer, I feel pretty good about where my life is at 40, and since this cancer thing is a totally temporary pain in the ass, I'd say that's pretty good.