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!!
