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!!!

Thing 1 and Thing 2

Since this is a blog about my life, it's sure to include my favorite people!  Two such people are my nephews.  They are precious- even though I'm biased.  I love them more than I ever thought possible!!

Because this is a public blog, I will only refer to them by their first initial.  I just think it's the safest way to refer to them.  I got the idea from a friend who refers to her own children that way and it seems to work well.  But I may also refer to them as Thing 1 and Thing 2.  My older nephew, A, is in LOVE with Cat in the Hat.  But recently has developed a fascination with Things 1 & 2.  So, in his honor, that may be his nickname here. 

As I sit and write this, A (Thing1) is singing along to a Cat in the Hat movie.  I love his sweet spirit and little voice.  He loves coming to Mimi and Papas house.  Of course, Mimi and Papa let him do what he wants to most of the time.  It's been sometimes confusing to him because I (Cici) have lived at both my brother's house and my parents' house.  He sees me in both places and you can see the wheels turning as to where I belong!  He's just precious!!! 

Little L (Thing2) is my buddy!  Truly!  When I moved to Chattanooga, we worked it out that I'd keep him instead of sending him to daycare.  That only lasted 2 weeks, but he won my heart for sure. His smile is contagious and he's so good natured.  He's going to grow up to be a hunk of a kid with red hair (at least so far).  He just turned 9 months old and I can't wait to see his personality really develop as he starts to be mobile and talk. 

There may be a time where I include pictures.  We shall see. 

I wanted to write about them today because I got to nap with both of these boys today and it was such a precious time.  When I put him in his bed, Thing 1 proudly showed me where he'd colored on the sheets last time he was here.  He was so unapologetic and so proud of his handywork.  I couldn't help but be pleased for him.  Besides, it's a sheet.  If it's got pen scribble on it, will it keep him from sleeping?  No!  In fact, he can go to bed knowing that we love his creativity!!  Thing 2 is still small enough to nap in the big bed with Cici without being able to get out.  He talks himself to sleep- but almost as if he's scolding you for making him go to sleep. 

As must as they fight it, it's obvious how much both boys love naptime!  Much like Cici!!!

Love Yourself today!

Yesterday was a day to take care and spoil the ones you love.  Today is the day to take care of yourself!!  (And it's half price candy day!  Woohoo!)

What can you do to take care of yourself today??  I've done a lot of reading over the last several months and I've chosen books that are sassy, smart assy, and really smart!  Some of the reoccuring themes is Take Care of You!  It makes total sense but I don't think we do it enough.  I never have! 

But I'm changing my tune!!

How about going and doing something that you love?  Being outside in the sunshine or (if it's not nice and sunny where you are today) order in your favorite meal and enjoy a day of relaxing?  Both sound incredible to me!!  What about writing a note to someone you've been meaning to reconnect with.  It'll get rid of it hanging over your head and who doesn't love getting mail in return?!?! 

How about sitting down and making a list of meals you can make for your family?  It'll be a healthy change for your diet and save you some money that can go for a new vaca!!  This is one of my goals.  I've been researching how to eat a healthier diet- and still make it easy on myself!  I'm not going to go crazy and quit eating anything that I like- maybe just readjust the amounts. 

Call the doctor and make the appointment that you've been putting off.  I want every single one of you to talk to your doctor about your health.  If you haven't thought about a colonoscopy, at least talk to your doctor about it.  Take it from me- Remember that I just had 3 colonoscopies in 3 days- they are NOT a big deal.  The prep and the hype before hand is the worst part.  Just get the prep, sike yourself up for a day of a liquid diet and DO IT!!  It's so worth a convo with your doctor.  Since I was diagnosed last October, I've heard more and more stories of young people (under 40) being diagnosed with various types of cancer.  If you're blood tests come back normal and your doc says you don't have any red flags, you move along with buying all the half price candy.  If something comes back funny, then you deal with it and STILL get to go get the half price candy! 

Don't let it be scary.  Take control of what's going on! 

I'm off to go enjoy the sunny day and do things that I want to get accomplished for myself!  Spend this long weekend doing things to take care of YOU!!  It's my challenge for you!  Post and let me know what you're doing!! 

~Claire

Color runs

Many of my friends are participating in 5Ks- in their local communities, at Disney World, at the beach.... all in the name of getting healthy and motiviated and giving back to charities they support.  My amazing friends even held a 5K in my honor last month.  I've never run in a 5K!  My friend, Robert, always said, "If I'm running, you better stop and pick me up because someone's chasing me!"  That's pretty much summed up my running philosophy. 

But lately, I've wanted to jump on the bandwagon.  I love the idea of being able to get involved in the Monster runs -- bootcamp type courses, drinking, and hanging with your new 1000 friends.  But, let's not kid-- I wouldn't make it through those courses, at least not in the required time.  The parking lot would be empty by the time I finished and I'd miss the drinking.  HA! 

Here is my new way to get involved and be a part of this trend without killing myself!!  I saw it online today and had to share!  If there's a color run near you, definitely check it out!  There are so many being planned now that you can pick one or two... or five and support organizations in your local community! 

http://www.timesfreepress.com/news/2013/feb/12/charitable-5k-color-runs-turn-people-into-organic/?entertainmentlifeentertainment

**And I need to shout out to all of my peeps who attended the Cocoa Loco in Cumming, GA!  What an amazing day that was and I thank you so much for traveling from other states to come spend the day supporting my fight!  I love you all!!!

Home is Home

"Home is Home." That's what a good friend told me years ago when I was trying to figure out whether I wanted to stay in Atlanta or come back to East Tennessee. I missed East Tennessee  and my family terribly, but didn't feel like I'd done all that I needed to do before I moved back home.  At the end of 9 years, it wasn't much of a choice to come back.  I didn't have much of a choice.  I thought I'd come back here, live with Matt and his family for a little while, and get back on my feet.  Well, of course, there was a different plan for my life adventure.  After being in the hospital, it made more sense for me to move home with mom and dad until I get through chemo and can have my colostomy reversed.  The set up is just better and I'm not interfering with all that Matt and Jodie have to do with the boys.  My dad is home and can help run me around if need be.  And, my mom is very lucky and gets to retire at the end of this month!  She's so excited to be able to be home and will be a great help with my continued treatments and recovery. 

I think, by the end of my time here, I will have plenty of things to write in a book..... not about cancer.... but about moving back in with your parents after being gone for 20 years!!!  HA!  We are definitely experiencing some growing pains and getting adjusted to living under the same roof again!  I often times feel like I'm 12 or 15 again.  This has been an internal struggle for me because I've always been fiercely independent. 

But the purpose of this post is to say how glad I am to be back in Chattanooga.  For years and years, I said that I would never move back here.  I would be willing to move back to Knoxville (which I consider home.  I lived in Knoxville longer than I've ever lived anywhere else.) Or even to Nashville.  But never Chattanooga.  What a change of heart I've had!  First, my brother started having babies.  Super CUTE babies!  Growing up, our family was spread all over the country.  So, having family close is important to me since we didn't really have that.  But in addition to that, I've started to see the beauty in this city over the last few months.  It is a true southern town and has so much to offer and to do.  So, as I learn my way around the city again, I keep hearing "Home is home" and it's good to be home!!! 

Courage

It's Monday!  Find your courage for all things that come your way this week! 

Amazing News!!!

I got a call from my GI doctor yesterday.  He left a message and shared that all of my polyps that were sent for biopsy came back benign!  GOD IS GOOD ALWAYS!  He does answer prayers.  He let me have peace of mind even when I was sure one had cancer.  I was ready for the news and ready to tackle it head on.  But He didn't want me to have to.  What amazing news!  I'm so thankful!

Just another day in paradise.....

So, ya'll know that I ended up in the hospital.  Monday, after they finished my colonoscopy, I found blood in my ostomy bag.  I called the Dr. on call and he said if I see any more than a tablespoon, it's too much.  Oh.... well.... so a bag full might be too much???  His words were "I'll call ahead to the ER and tell them you're on your way." I said, "Do you really think I need to go?"  He said 3 different times that he would call ahead to tell them I was coming!  Ok, so, I guess I'm going to the ER! 

The ER really is quite a crazy place.  People were so obviously sick and I felt like an imposter being there.  I didn't feel the least bit sick.  And then, felt bad again, when I got called back long before they did.  Mom and I were talking and laughing.  I am SUCH A FAKE!  :)   The ER was so backed up.  I got put in a room with only an old rickety dentist's chair. HA!  After about an hr and a half, I got put in a "real" ER room with a bed and TV, but the adjuster on the bed didn't work and neither did the TV changer.  HA!  I stayed there until they found me a room at 2AM!!!  UGH!  So, I got settled by 2:30 and started the prep for another colonoscopy so they could figure out where the blood was coming from.  I chugged the prep from 2:30 to 4 when they told me I couldn't have anything else- in order to be ready for the procedure.  Hmmm.... Let's see, if I'm not cleaned out, I won't be ready for the prep anyway.  But the nurse took it and said she thought I'd be good. 

Everyone was so confused by the doctor's orders, or lack there of.  There wasn't an order for the colonoscopy because the GI Dr. in the ER wanted to wait and see what my blood levels were in the AM and to see if the bleeding continued.  He would decide in the AM after talking to my GI Dr.  But there was an order for a prep.  ...... hence the confusion! 

My delicious dessert of prep:

I chugged as much as I could.  I got 6 cups down. 

The whole stay continued to be a comedy of errors!  I was put on the Cardiac floor.  I'm assuming that it was just an open room, since I wasn't having cardiac issues.  But they insisted that I wear a heart monitor.  I told the admitting nurse that I'd never had to wear one before, but she insisted that it was normal and "Oh, Yes!" she said.  So, I had to wear a stupid heart monitor the whole time.  Here's the kicker:  I don't think it was ever really on.  It fell out of the pocket one time and the cords pulled out.  I picked it back up and set it on the bed for a few minutes.  I did plug it back in, but no one ever came to check on me.  No alarms went off.  Nothing!  I was con'ed!!  :)  Attached to wires everywhere. 

 

When I was allowed to eat and not NPO, I was on a liquid diet.  I have to admit that I cheered when this came in.  I cheered for this!!!  Broth and jello.  Really??!!! 

 



 

So, what I thought would be an overnight stay turned into 3 days.  I am so glad to get home!!  I got to veg today and stayed in my PJs until noon!  Loved every minute of my day at home! 

 



Bring it!

I think this little guy is great and so fitting for the way I feel today!  (And I can't wait to get to the beach sometime!)

Thanks, Fresh Prince!

Like a lot of my friends, I grew up watching The Fresh Prince of Bel-Air.  I LOVED it!  I love it now in reruns.  It makes me laugh everytime.  So, I often catch myself humming the catchy little tune.  Today, as I was trying to nap, it popped into my head. 

As the words ran through my mind, I was struck by the opening verse and how much it applies to my life now. 

"This is a story all about how my life got flipped, turned upside down.  I'd like to take a minute, just sit right there.  I'll tell you how I became the prince of a town called Bel-Air." 

Colon cancer and the effects of tumor removal have flipped my life upside down in the last 3 months.  I went today to finish the colonoscopy that they tried to start in the hospital.  In the hospital, they only got as far as the first turn and BAM! a tumor blocking the whole intestine!  So, now that it's been removed and my guts have had time to heal, it's time to finish that baby up. 

Well, today they found 8 more polyps.  In case you don't know, that's a BUNCH!  It's a truck load.  1 in particular has my GI doctor quite concerned.  Of course, he won't say much except that it's got to be sent away for testing.  Well, that's never good when your doctor won't directly answer your questions.  It means "I have a horrible feeling but I won't tell you now." He was just very casual. 

Now.... up until this point, I've really taken everything with a grain of salt.  Thought I was going to the ER for a couple hours to get checked out.......Ended up being admitted and staying 15 days.  Tumor completely blocking the colon, had to come out regardless.......Wake up to find an ostomy bag and an open incision from my belly button to my breast bone.  Cancer staged at IIIB......Need to be pretty aggressive to beat it.  Colostomy bag only going to be temporary for 8 weeks until my guts can heal.......don't want to miss the prime window for chemo so reversal will have to wait 8 months until chemo is done. 

I've, honestly, been ok with every single conversation and decision thus far!  Really!  I'm not saying they made me happy but I was honestly ok.  Today, with the news that there could be more cancer, the fears and what if's are trying to creep in.  But it also makes me realize that there's a lot of fighting left for me to do. 

I kinda thought I might coast through this, but God wants to use me with this.  I'm just not sure how. Not sure how to help other people and pay forward all that the support and encouragement that I've gotten from amazing friends. I really don't know where to start. My hope is that this will maybe be a start.  A place for people to come together and support one another!  I'll, of course, post other things going on in my crazy life.  It's just that now my life has been rearranged!