Chemo/ Ostomy Q&A

My friends are amazing!  They support me and love me and encourage me.  They make me laugh!  I've had so many conversations with people about cancer and some have been afraid to ask questions, while others just jump right in with the questions.  I can't speak for anyone but me.  But talking about cancer and my circumstances is therapeutic.  It keeps me from just having it bottled up inside.  I thought I'd share some of the questions and give some perspective.  Again, it is only MY perspective.  I'm not a doctor. I don't know what the right answers are.  I only know what my answers are.

How did you know you were sick?  I didn't really.  I thought I was constipated and crampy.  Then one night I couldn't hold anything down.  Jodie talked me into going to the ER.  I thought they'd pat me on the head, give me a prescrip, and send me home.  Not so much! 

What can you eat?  I can eat whatever I want.  I'm not on any kind of dietary restrictions.  In fact, here's a silver lining- they want me to eat whatever I want- in order to keep my caloric intake up!  Woohoo!   I typically don't eat the 48 hours following my chemo pump because I'm sleeping.  So, I stock up on Gatorade and Ensure. 

Can you drink?  Yep, again, I can have anything I want.  I've had a couple of drinks since starting chemo but 1. I'm totally a super light weight these days and 2. it doesn't appeal to me so much.  Of course, the docs recommend that I stay away from it.  But that's for overall health anyway. 

Do you feel sick?  I only feel sick when I get my chemo pump off.  I go for treatments on Tuesday and then get a pump put on.  I wear the pump for 46 hours and then get to go back and get it off on Thursday.  Most people tend to get sick while wearing the pump.  I'm tired during those days.  Once I get the pump off, that's when I get sick.  But the nausea meds are good  :) 

Can I see your scar?  Yep!  I have no reservations about sharing my scar.  I consider it my war wound.  It runs from my belly button to my breast bone.  I also have an ostomy bag.  That's a whole different story!  But once I get it reversed, I'll have a small scar there too.

Do you have an ostomy bag?  Yep.  It's my least favorite part of this whole adventure.  There's nothing good about it.  Well, besides the whole "living through colon cancer and needing to let my guts heal for a while" thing.  My bag is temporary.  Depending on the severity of cancer, size and location of the tumor, etc, some people require them permentantly. 

What's it like to have an ostomy bag?  Well, to me, not fun.  But doable.  It's really like having a hole in your stomach that poop comes out of.  Sometimes I can feel it and other times not so much.  Sometimes it fills up with air and I just have to empty that before it leaks.  (Yes!  If it leaks, it's leaking poop!)  I usually have to empty it 2-3 times per day.  Some days more, some days less.   There are ways to protect your skin to keep from getting poop burns- they are no fun!  Hard to imagine, I know!  :)  
There are lots of different styles of ostomy bags.  Each person has to try until they find the best "fit" for them.  I use a 2 piece bag.  The bottom sticks to my stomach and then the bag snaps on like a tupperware lid.  I have to change the whole thing every 7 days or so. 

Can you shower with the ostomy bag?  Yes I can!  Thank goodness.  It's a God send to me! 

How long do you have to have the ostomy bag?  I have to have mine until I finish chemo.  Originally, it was only going to be for 8 weeks.  When I had surgery to remove my tumor, they couldn't reconnect my colon because one side was so distended and swollen.  So, they did the ostomy to let my guts rest and return to regular size.  Meanwhile, the surgeon and oncologist discussed the prognosis.  They really felt like we needed to take full advantage of starting chemo during the prime window for preventing any spreading of cancer.  So, I started chemo.  My surgeon won't do the reversal during chemo because it's such major surgery and he doesn't want to increase the chances of infection.  So, instead of 8 weeks, it's going to be 8 months.

"I can't complain to you....... You've got cancer so I've got nothing to complain about...."  I totally appreciate this sentiment and if things were reversed, I'd think the same thing.  But NOT TRUE!  So, guess what, I've got cancer.  And, I'm going through chemo.  That doesn't mean that you're not allowed to have a horrible, no good, very bad day!  You're allowed to vent about it too!  Really!  It's not normal for you not to tell me about your good days, crappy days, happy days, crazy days.  I also see it as apples and oranges.  Me having cancer and you having a crazy day- 2 totally different things!  PLEASE vent to me and keep telling me about your days- good and bad!!!