Healing Scars: 6 Weeks Post Reversal Surgery

Mommy & Elise December 2012-
 Six weeks post surgery and feeling great!
So happy and grateful! 

2012, you've been a crappy year (pun Intended) but, I've learned some wonderful things from you....I've learned a lot about patience, emotional pain is a lot harder than physical pain, but they both get better with time. I've learned hard times will pass and they make you much stronger. I am more empathetic and I value the precious little moments even more. I've learned to slow down. I don't have to be perfect. I've learned to appreciate the small things and not to take anything for granted. Even though this year has thrown us some challenges, there is so much to be grateful for. I have a second chance at life, renewed health, I've fallen in love over and over again with my amazing husband, felt so much love from my family and friends, and most of all- I've had the privilege of being a mommy to an incredible little girl. I've experienced love so amazing that I didn't even know it existed. What joy Elise has brought into our lives this year. 2012, I am happy to move on, but it's a little bittersweet. Even though you've been filled with harder moments that I would have liked to endured, you've also strangely been the best year of my life so far....

It's been 6 weeks since I had my reversal surgery. It's been interesting and quite a challenge learning the new me. Physically and emotionally. I am healing physically every day. I am a little stronger each morning, I have more energy and I am not in as much pain anymore. I am learning how to use my jpouch and I am actually really happy with it. It's not as bad as I feared. I will admit a few curse words have been shouted from the bathroom occasionally from the pain, those bad days are fewer and farther between now. I am also seeing a therapist and a psychiatrist. I've been diagnosed with PTSD from all the procedures I've had done and being awake for a lot of them has traumatized me a bit. I am happy to say since I've been going to counseling I have not had a panic attack since I've been home! How wonderful is that! :) I'm starting to feel more like myself again and I will be returning to work on January 7th! I am so excited about that. I am also getting back into taking pictures. It feels good to be getting my energy back.

I am going to post some pics of my scars on my stomach from the ostomy reversal because I've had lots of people asking me to see it wanting to know what it looks like. LOL! Some of the pics are really gross, but I have been healing really well and don't have to wear a bandage anymore. I am officially allowed to pick up stuff over a gallon this week! Yay! So that means my new year's present will be picking up Elise again :)

Here comes the yucky pictures......The first picture is on my 5th day in the hospital right before we were released to go home. There is a pinrose drain in my wound. It freaked me out when I saw it the first time. I was so drugged up on morphine and when they took off my bandages the first time I though, "OMG, is that BAKED ZITI???" No, it couldn't be, wait did they accidentally drop a glove in me?" It's so funny what thoughts race through your mind when you're on a morphine cloud. They had to keep the wound open because it is considered a "dirty wound" since stool once came out of the hole. If they completely sewed me up I would have been at a risk for infection. I was lucky and did not have a lot of extra tissue, so I did not have to pack my opening. I just had to change my bandages twice a day.It was a bit painful having a hole that has been open for a year put back together. My stomach muscles hurt pretty bad. Abdominal surgery is no joke :( I have realize that just about every movement we make somehow involves our core muscles. OUCH!!!! Oh, and I have also learned that pale white skin doesn't scar as bad. I am WHITE! But this was actually a good thing for me because my scars from the last surgery are barely visible now. Yay for pasty pale skin!! :)



one week post reversal with a swollen belly,
pinrose drain and staples. Gross and painful.



















lots of hair loss from chemo, but my hair is growing back in
I have lots of baby hair in the thin spots so hopefully it
will be back to normal soon! I put volumizing mousse in
it and curl it to keep it looking fuller. Most people would
never know unless they knew how much hair I had before. 

Also, lots of people have asked why I didn't lose my hair during chemo. Truth is I actually did lose about 1/2 of it. I had very thick curly hair before chemo and now it is super thin. I was lucky in the fact that I did not lose it in chunks, it was just steadily shedding. I would wash my hair and get fistfulls of it. It was pretty irritating and upsetting, but luckily I still had enough to keep it long and not cut it all off.

3 weeks post surgery, drain out, still have staples. You can see
my C section like scar from the first surgery. It healed well!
I have lots of other small scars from the the scopes and other
drains they put in for the last surgery. 7 scars total.

This is where it got gross- I had my staples removed and they
used silver nitrate to remove any scabbed skin. It left me with a
painful open hole in my stomach. Surprisingly, it healed
very quickly after this. Still putting bandages on it twice a day.
 



All bandaged up, but excited to no longer have an ostomy bag!

5 weeks - big improvement! Swelling is going down and it
is starting to close up!
 

6 weeks and my stomach is starting to look more normal.
The swelling has gone down more and I don't
needing bandages anymore! It is completely closed
and I never had any infection. It is still very tender and sensitive
to hot and cold, but for the most part, it is looking good!
I am enjoying wearing clothes that fit closer to my stomach now! :)



Post 38: Goodbye Ostomy & my new life with a J-Pouch

I am now at the final stage on this diagram (C/D)

It's been about 9 days since surgery, and I am doing pretty well. At the bottom of this post is a video of the old me. I will post pictures of my healing progress soon. I have the expected aches and pains and I am exhausted, but each day I am seeing some progress and feeling a little better. Just to clarify, this surgery was to reverse my ileostomy and now I am putting my J-Pouch (that was constructed in my previous surgery) to use. It's been challenging learning how the "new me" operates. As of right now I am not allowed to lift anything heavier than a gallon of milk for the next 6-8 weeks (to prevent the risk of a hernia where my ostomy used to be). You can imagine how challenging that will be with a 19 month old toddler. But so far, so good.

I was in the hospital for a total of 5 days and here's how the past several days have been going:

Saturday, November 17th
Before the journey began, we had a special Thanksgiving feast because we knew Phillip and I would be stuck in the hospital during the holiday. I also knew this was my last chance to eat a good meal for a while. I am glad we had a good dinner because I was not able to drink or eat anything until 5 days later on the following Thursday. On Thanksgiving day, I was able to have my fist sip of delicious chicken broth for Thanksgiving dinner. Barf. (And I actually think I did barf that day....anyway) But hey, now I'm home and on the mend.

Elise at Thanksgiving Dinner.

Sunday the 18th- Clear liquids only diet - Prep for surgery. It was nice not having to drink the Golightly!!! Yay! I didn't have to drink it because, well, I don't have a colon! It's much easier to prep when you don't have a colon! I know you all are so jealous. Haha.
Just nothing  after midnight.

Monday the 19th- Had to arrive at Shands for surgery check-in and was taken back around 5:30PM. LONG day with no water :(
The surgery took a couple of hours and I was in recovery for a bit. MUCH easier than the last surgery that took 9 hours.

Tuesday the 20th to Wednesday the 21st- NO food or water until my bowels woke up. I also had a scope done on my JPouch to make sure I did not need another dilation.

Thursday the 22nd -Things got moving so I could have a liquid diet

Friday the 23rd- I was allowed to try solids. This day was HELL and when the REAL PAIN started. I was getting up and going to the bathroom every 15 minutes and it felt like I was pooping shards of glass and acid. The air trapped in my intestines was INTENSE. I was thinking "what have I done!! I just want my ostomy back!!!" I was pretty depressed and in so much pain I just hit rock bottom that night. My incisions were painful and I just was ready to go home and be with Elise.

Saturday the 24th- things were slowing down and getting much better. I put on my best fake smile when the doctors came in to see how I was. I pretended I was super duper and feeling great so we could get the heck out of there and get home to our baby girl!!! They believed me and let us go! We couldn't get home to our little girl fast enough. Honestly a lot of that week was a blur from the anesthesia, morphine pain pump, 3 severe panic attacks.....it's all a big blurry nightmare.

Hey look!! No BAG!!!
Eight days after surgery-
 bandaged up and on the mend.

The great thing is today I can look at my stomach and I no longer have a bag of crap attached to it!! Yipee! It's the little things :) My new functioning JPouch has been interesting over the last few days. I am having to use lots of baby wipes and creams and soak in warm water to get some relief for my poor behind. Keep in mind, I have not used the bathroom like a "normal person" in over a year. This has been a big learning experience over the past few days and it will continue to be for some time over the next few weeks. Patience is my biggest challenge at this point and recovering from the frequent panic attacks during my hospital stay took a big toll on my emotionally. Phillip never left my side last week and he was truly my hero through all of this. I can't tell you how lucky I am to have such a great family. My mom stayed at our house and took care of Elise for us too.

Well, a day before my reversal surgery I was brave and decided to make a video of me changing my ostomy bag. I was super nervous and Phillip recorded me and cheered me on. I really wanted to document it not only because I wanted to have a record of this stage in my life, but also hoped it would be helpful for someone who might be struggling with the same issues. When I first came home from my last surgery it was one of the hardest times in my life. I felt like we were just thrown back into the world without any clear instructions. Phillip and I had to figure this out all on our own. It would take us hours to get the darn thing stuck on my stomach, and then I would have a leak and have to start the whole process again. One emotional meltdown after another.  Having an ostomy is life changing, but the most important thing I had to remember is I had the power to control how I react to things in life that are thrown at me. I had to decide if I was going to be a victim, or put my big girl pants on, put on some lipstick and pull myself together and move on with my life. As incredibly dorky as I felt while I was recording this,  I still wanted to post a video to show that having an ostomy is not the end of the world, and in fact you can have a pretty awesome, normal life with one.

Now that I don't have my ostomy anymore, of course I am excited to not have to worry with all of that stuff! But these next few months are going to be a big transition for me. Having an ostomy became my new normal. I finally got the hang of it, everything had healed and was functioning well, I figured out what to eat/not eat, learned how to pick out clothes that would disguise it. It just became part of my day. I will admit, however, now that I can finally see my bare stomach (Oh how I missed you  belly button!) it will be nice not having to worry about passing up a dress or shirt I see at the store because the bag might show through the fabric. Without my osotmy I know things will be a be bit easier. But living without a colon will forever have it's challenges. I still have to make sure I stay very well hydrated, I will still go to the bathroom more than a normal person would. I will still have to keep a note of what foods disagree with me. I'm not in the clear yet, and I know I just need to remember to be patient with my body. Intestinal surgery is no walk in the park. Digestion issues affect everything else in the body. Patience......

But today I am allowing myself to toot my own horn and say I am proud of myself and how far I have come!! A year and a 1/2 ago, I gave birth, found out I had cancer, had a total colectomy, endured 8 rounds of chemo, gone through countless procedures and tests, lived with an ostomy for a year, and just had a reversal surgery. And now I am just so grateful to be here writing, cancer free and with so much joy and gratefulness in my heart.  This long journey has chewed me up and spit me out. I feel like I have been dragged up and down the street a few times as well. I am a different girl. I am damaged, and a bit tattered and torn. But I could care less about scars, and I am over with being embarrassed of what has happened to me. This experience has just become part of my story. But it isn't who I am. I am grateful for renewed health and have a greater appreciation for the human body. Our bodies are truly miracles!! Isn't it amazing what we can endure and how we can come back even stronger than before? I have a lot more learning and growing to do, but I am proud of myself and my amazing family.

DEEP BREATH. It's all going to be ok :) 

Posted below is the video Phillip and I made just a day before my reversal surgery. 
(Please nice comments only!) I was a nervous wreck and felt like a huge dork, so I know I left out a few things. Just as a warning, if you have a sensitive stomach don't watch. (To put it bluntly you will see intestines hanging out of my stomach) But this is me and how I've been living for the past year. 

Goodbye Ostomy! I already don't miss you :) 
A previous post I did listing all of the products I use can be found HERE. 

This is another video I wanted to share of someone who has greatly inspired me throughout my whole ostomy experience. Check out her blog at OstomyOutdoors.com

Post 37: A year ago today.

We carry our phones around with us everywhere now days, but this morning a little reminder popped up on the screen. A year ago today I wrote myself a note. I put a little alarm on it so it would surprise me a year later - today.

I am so grateful for today.

 Of course, I don't need a reminder to remember that day, but I guess I knew myself enough to know I would appreciate this little note down the road. You see, I'm a scheduler and I like to have things written down, in my little calendar and planned. But OH, how our life did not go as planned. We have definitely had some bumps in the road and some challenges this past year. But even though we feel a little beaten and bruised, we have more love in our hearts than we ever thought was possible. I now understand the saying, "life is what happens while you are making other plans." How true it is!!

 Really this little note couldn't have come at a better time because I've been having a rough couple of weeks. When I saw the little notification on my i phone calendar, it made me smile because I think of how far we've come. We still have a long way to go, but we have faith that the hardest part is behind us. Lately we've been so busy with appointments and procedures. It's been a challenging few weeks. Even though I've been finished with chemo for over 7 weeks and I would like to say I feel like myself again,  I know it will take some more time. The new school year is exhausting, but invigorating. I love being back in a normal routine. I took for granted the hustle and bustle of getting our little girl dressed for school, her crawling in my lap while I put on makeup, and kissing Phillip goodbye for the day as we go to work. I love feeling that sense of routine and normalcy again. I am struggling each day with energy levels, but I can feel that I am getting stronger every day. I can do more today than I could last month, so feeling this progress makes me happy! Phillip has been pretty busy with work and he still has a lot on his plate with all of this, but I can see that he's able to breathe more, smile more, and we laugh together more. We have been able to enjoy getting out and doing more things as a family and that makes us very happy.

So where were we a year ago today? Phillip was sitting nervously in a waiting room as I was laying on an examination table in a hospital gown. I was about to have a procedure done, and after that we would hear the words "you have cancer." That was a day we will never forget. I am so grateful today to say I am feeling well and typing this after a long day of teaching - cancer free. I am about to have my second surgery in November to put me all back together. We never thought we would get here. What a journey this has been!

A year ago today, we had no idea what was ahead of us or what this new journey would entail. A nurse was holding my hand and she gently brushed my hair out of my face. She was smiling, trying to comfort me and distract me by speaking softly and talking about my little girl. I needed this nurse by my side desperately, and she never let go of my hand - not even once.  The walls of the room were covered with giant TV monitors. I was scared to death. Praying. I just remember the smells - you know those weird hospital smells, and the sound of the heart monitors beeping. The doctors were talking quietly about what they were about to look for during the procedure. I was having an endoscopic ultrasound done to see how deep the cancer had spread, and even get a verification that it actually was cancer & what stage I had. This procedure was kind of like a colonoscopy but with an ultrasound device on the end of it. One of the doctors kept asking me if I was sure I didn't want to be sedated? I was afraid of being in pain, but I wanted to do the procedure awake so I could understand what was going on. I wanted to see this ugly tumor inside of me and I needed to hear the words from the doctor while I was awake and alert - not doped up with meds. There were about 3 doctors around me, plus an anesthesiologist near by just in case I couldn't handle the procedure awake. Physically it wasn't that bad - extremely unpleasant, yes - but how quickly we forget pain (thankfully). The emotional part of the day was the hardest part.  After the procedure was over, my doctor, who was an amazing specialist came around and sat next to me. I knew what he was going to say even before the words came out of his mouth. I was laying there on my side and I could see the ugly tumor on the TV screens and knew it wasn't supposed to be in my body. He held my hand and told me that everything was going to be ok, but I did in fact have cancer. Those words were tough to swallow. I had seen the tumor before during other scopes, but not this clearly. And not with an ultrasound device. I was a surreal experience that is so clearly etched into my memory.

Even though it was one of the worst moments of my life, it was also a moment that I will be forever grateful for. The tumor was found, we now knew it hadn't spread, I was in good hands with my doctors, and there was a plan to GET IT OUT. Just in time. I thanked God over and over for finding it when we did. The doctors told me if I would have waited even 6 months longer the tumor would have burst through my colon wall and spread to my lymph nodes or to other organs. You can read more about that day HERE as I wrote about the next day. I didn't quite know what was going to happen next, but WOW, how our life has changed. It's weird for me going back and reading my thoughts and feelings from a year ago, but I'm really happy I decided to write about it. When I started writing this journal/blog I couldn't imagine the day when I could go back and it would all just be a memory. It's truly amazing how fast time has gone by. I am so grateful to be where we are today. I pray that I will live to be an old lady and this will all just be a story Phillip and I can tell to our grandchildren someday.

Again, we just want to thank everyone for all of your thoughts, prayers & support. Today is a good day :)
 I love you all!
_________________________________________________________________________________

Another post to play catch up......

I didn't get to write about my past couple of outpatient procedures I've had in the past couple of weeks, so I just wanted to add this post at the end to keep everyone updated. Sorry if this is kind of long winded. I'm just happy and felt like writing today!

 Here's what we've been up to for the last couple of weeks....basically lots of poking around, a little humiliation, with a little twist of "discomfort" as doctors like to call it. Glad these tests are behind me! :)

Wednesday (Sept. 12) I had my pouch-o-gram.  Lets just say it um.....well, it went.  I have been warned that it would be a bit uncomfortable and awkward. Calling the procedure uncomfortable is an understatement. I'll explain what in the world a pouch-o-gram is in a minute. 

 When Phillip and I checked into the reception desk at the radiology department, the receptionist asked me what procedure I was having. I said "Gastrografin Barium Enema / AKA Pouch-o-gram. She said, "Ohhh....then asked for my photo ID.  Phillip made a joke about "yeah, gotta make sure it's her so no one can sneak in there and get a free enema!" I love my husband so much. He always makes me laugh even when we are in the most awkward situations. She laughed saying "Yep! People are lined up at the door for those things!" I realized then, that I didn't quite know what I was in for. Just how bad is this going to be!?? 

Well, let's just say I'm glad it's over. I have had two outpatient procedures done in the past couple of weeks and I am exhausted. Friday the 7th, I had a scope to look inside my intestines and this was another "uncomfortable" experience. I will describe that in a minute too.

As if the procedures themselves are not awkward enough, the conversations that always come with my doctors visits aren't the most enjoyable chats either. Usually at the beginning of every doctors visit, ER trip....basically anyone I speak to who is not my surgeon or oncologist (and doesn't have a full understanding of what a J-Pouch is) I have to explain everything (On a side note: I just want to say how grateful I am that one of my best friends, Brandy, is a nurse practitioner. If I have a general doctors appointment I go to her so I don't have to deal with anyone else. She understands all the details of what's been going on with me, so I get to skip these conversations.)

First, the radiology techs / nurses / doctors come in. Most of the time they can't quite grasp why I am there and look at my records a bit puzzled.  

They ask "So, what surgery did you have done?"

"I had a J-Pouch surgery or what's called an ileal pouch-anal anastomosis."

"Hmm...OK" looking at chart......long pause.

Not seeing the light bulb go off , " Basically they removed my colon and created a new internal pouch with my small intestines that will sort of serve as my new colon."

There's the light bulb moment! "OH! OK! So then what is the surgery you are having soon and what procedure are you having done today?"

 Hmm. I thought they were supposed to know that, but  maybe they are just checking to see if I know what I am having done??? I say "They are going to reconnect my small intestines so I don't have to have a bag anymore." Pointing to my stomach."I have an ileostomy. Today I will be having..." - insert name of procedure here.

Then we have a brief conversation about how I had Ulcerative colitis for 15 years, had colon cancer and why I had the surgery. Did chemo, yada, yada......Then I get the whole "Oh, I'm so sorry. You are so young!" Then I pray they won't tell me a story about someone they knew who had colon cancer.

I smile politely "Yes, thank you"......etc. This is the typical conversation so I kind of have a script in my head for what to say if any shocking comments or questions are asked. 

But before anyone touches me, I now always feel this need that I better play it safe and REMIND people just one more time "I have no colon." 

"You don't have a colon?" And thank goodness I said it again. It becomes clear to me that they did not listen to a word I said. As they are putting my IV in, I am getting really nervous. I start to sweat, my legs start shaking. 

"Oh, ok...well, did you do your prep for the procedure? Drink your gallon of prep / fast for 24 hours / drink or eat nothing....this scope will go in your colon...this fluid will be put in your colon......

I interrupt, "I have NO COLON. My J-Pouch is connected to my rectum and I do not have a colon anymore.  I have a bag." Pointing to my stomach. 

"Is there a portion of your colon left?. . ."

"No there is not. Its gone. I don't have a colon."

"So what do you. . ." 

"Basically my small intestines are connected to my rectum."

"Oh what?! Well, how do you.....?"

 "I have an Ileostomy - a bag attached to my stomach.....

......Crickets sound.....

By this time I want to either run out of the room (hospital gown and all), ask for someone else to talk to and get someone in there who can explain this in depth to them, or just bang my head up against the wall. I can feel my body start shaking and I feel the anxiety building. I think to myself, I wish I would have taken that Xanax before I came.....Then to make things a little more interesting, my veins won't cooperate because they have been stuck so many times. They tell me they will be back with "someone else who will give it a try to get the needle in." 

YES! PLEASE get someone else who understands what's going on. Maybe they are just as flustered as I am?

 It is pretty draining to say the least when I have these conversations with medical professionals. Occasionally, I will have people who read my records before I come in and familiarize themselves with my surgery. I like those people. My specialists are always top notch and I feel very confident when I am with them, but when I go anywhere else and see someone new, it adds a whole new element of stress to the mix.  I know they don't see a whole lot of J-Pouch patients come through, but it is more common than you think.  

Luckily the doctor who performed my Pouch-O-Gram Wednesday was top notch and her radiology tech was awesome!  They were on their game and knew exactly what to tell me to keep me calm, and kept me informed about what I would feel. They put me at ease and it really took a tremendous amount of stress off of me. Plus I popped a Xanax an hour before I got there. HA! That helped a bit too. :) 

To clarify what a Pouch-O-Gram is, it is a procedure where they insert Barium Contrast ink into my J-Pouch and then take pictures with a CT scan to see if there are any leaks or tears in the pouch. They have to do this before I have my surgery and get re-connected. We don't want any leaks in my intestines! The PA tried to be a gentle as possible and promised they would only put in as much contrast as needed. I had to get undressed, lay on my side and they inserted this rubber catheter / balloon thing into my rectum. (Yep. Awkward.) Then they filled me up with the Barium contrast. I was told to hold it in as best as I could. As soon as she started the flow of contrast, my small intestines began cramping. The cramps were definitely out of the "uncomfortable" level and well into the "painful" level.  They took lots of CT pictures and I had to roll over on my back and roll to my other side. This was interesting. The wonderful assistant held the tube in me and had a towel pushed up against it in case it leaked. It was a humbling experience to say the least. Once they were finally done (which took only 15 minutes, thank God!) they sucked the fluid out (Yep, awkward again!) and then I was able to go to the bathroom to expel the rest of the contrast.  Instantly I felt better.  The results are being sent to my surgeon, and if it shows any leaks she'll (or actually his nurse will) call to reschedule the surgery. The radiologist felt pretty confident that we are all good and they did not see any leaks. GREAT NEWS!!!!! 

As super fun as the Pouch-o-gram experience was, it was a piece of cake compared to last Friday's procedure (Sept. 7). Friday I had a Flexible sigmoid scope done to look inside my J-Pouch. This is basically like a mini colonoscopy, but since I have no colon, it goes into my Pouch. We ran in to a few complications which turned it into a torture session and left me feeling emotionally and physically drained and in quite a bit of pain during and after the procedure. My veins gave us trouble again, but after a few tries to get my IV in, the sweet nurse numbed my veins with lidocaine so it was less painful. As they were putting me to sleep, I warned the doctor and anesthesiologist who was performing the procedure that sometimes I wake up during procedures. Well, this time they couldn't get me to fall asleep. So I layed there for over 30 minutes in a lot of pain. AWAKE. I remember all of it, felt all of it, and even though I was a bit drunk off the meds I still remember the nurse holding my hand looking up at the anesthesiologist behind me. She kept asking him if he could give me more. He said he couldn't safely give me more yet. They gave me way more than someone my weight needed and I still did not fall asleep. During the procedure they found a stricture. This means the place where my J-Pouch was attached to my rectum began closing up. It was so small and only had about a 1mm opening. They had to painfully dilate / stretch it for 30 minutes using a balloon, and who knows what other kind of gadgets to make it an opening of 10mm. They had to dilate it for two reasons. If it closed up, my J-Pouch would not be able to empty stool properly after my surgery and this could lead to infections, but they also had to dilate it so they could fit the scope inside to have a look at it. Once they were able to fit the scope in the pouch, we saw that it looked great inside. I was able to watch the whole process on the TV screen. Even though I was in a lot of pain, it still was a relief to see that I had healed well from my last surgery.  Overall, the experience went well from a medical standpoint. From a patient's view, it was painful and scary. No other words for it. Thankfully once it was all over and I got in the car, I passed out. I don't even remember getting home and getting in bed. I think I slept for about 14 hours after that. I am doing much better now and not in too much pain anymore. Just a bit sore as you can imagine. Unfortunately, I will have to go back in October to have the dilation done again before my surgery. They say it will more than likely try to close back up on me. But they assured me I would get a stronger anesthesia so I won't have to go through that again. Yes please. 

So that's the fun stuff we've been up to lately! I am slowly regaining my energy and I am able to work full school days. I am still pretty wiped out at the end of the day, but I see improvements and I feel like I am slowly detoxing from chemo. I will see my oncologist in November for blood work to see how I am doing. So far so good, and everything is falling into place as we hoped.

Thanks again for all of your continued prayers. I just want to say how much I love the people I work with. A few of them have really helped me get through these past couple of weeks and helped keep me calm so I can deal with all of this anxiety while I am at work. It's hard to put on the smiley face at work when you have all of this stuff running through your head. But they have really been looking out for me and giving me lots of encouragement. My mom has been so sweet too and keeping Elise during our appointments. I don't know what I would do with out so many wonderful people in my life. They help to keep us going! Phillip is doing well. He is my hero as usual and just an all around amazing man. Elise is recovering from another ear infection and virus, but she is just as sweet as ever and is growing like a weed. It's amazing how when we see her face, all of our problems feel like they just disappear for a bit. 

Love you all and thanks for your amazing support. I will keep you all updated on our next appointments. 

Post 36: The start of a new chapter.

Elise 15 months with a cancer free mommy

My last dose of chemo!

Phillip and I went to our oncology appointment on Monday, July 30th to find out the results of my blood work and CT scans.We were so nervous because every time we go to speak with the main oncology doctor we would hear more bad news.  "It's more aggressive than we thought, we need to do eight rounds of chemo instead of six." We went to Gainesville the night before because our appointment was at 8am the next day. We tried to make a date night of it, stay in a hotel and have a fun trip, but we were just too nervous to even talk much at dinner. To our relief (which is an understatement) the next morning at my appointment, my doctor came in and  looked at us with a huge smile and said everything looks good! He said the most beautiful word we've heard in a while - REMISSION! We still are in shock and can't believe this is finally behind us. I haven't wanted to announce anything until now because honestly I didn't want to jinx myself.  But I am so excited to officially say I am remission and do not have any detectable cancer in my body. All of my CT scans for my chest, abdomen and pelvis came back clear. We did however see a strange spot on my liver where the flow of blood has changed. It is something that has changed since my last surgery, but they are not too concerned with it. They will just keep an eye on it. I will go back every 3 months now for my appointments instead of every 3 weeks. Yay!!!I am so relieved to have finished my 8th round of chemo and I will not have to do anymore chemo treatments! We are tremendously grateful, overwhelmed with relief,  happy,  terrified, exhausted...there are just really no words to describe all of the emotions we have been feeling lately.

Back in my classroom for another year of teaching! 

Even though the worst part is over and behind us, (and we are sooo grateful for that) there is still a lot of work ahead of us. Phillip and I are both pretty broken, and drained emotionally and physically. We are trying to get a lot of rest and spend some time together just being a normal family. We've forgotten what it is like to just relax and not have this dark cloud constantly looming over our heads. I also really need to work on getting my strength back. My doctor said now is the time for me to start focusing on my fitness and nutrition. Three vitamins that are the most important for me right now are Calcium, Vitamin D, & Iron. I was not able to take any vitamin supplements while on chemo because it can exacerbate some of the side effects. For example, folic acid was a big NO-NO. It would cause my feet to blister up severely. I am also recovering from the extreme fatigue that chemo can cause. He explained that this will all pass with time, but for now I should expect to feel a lot more pain and discomfort as I become more active because my muscles have become so weak. My body is definitely screaming at me since I have started back to work teaching, 40 hours a week. He told me to treat everything I do like a mini workout. If I go to the grocery store and push around my grocery cart - that is considered a workout. Wimpy, I know. But that is all I can handle at the moment. The smallest things still wear me out, but acknowledging  that my body has been through hell and back reminds me to be more patient and gentle with myself and that it's all part of the process of getting better. I am learning my limits but I still need to push myself a bit. I want to get stronger and I am seeing a difference each day. Every day gets a little bit easier and that makes me so excited! Going back to school has been difficult but it has been so good for me. I am happy to be back in a routine and making progress! I was also named teacher of the year for my school at our County Schools Convocation. That was such a wonderful moment and a huge honor! It was so great seeing everyone. I forgot how much I missed being at work and with the kids in class. My classroom is definitely one of my happy places and it has really helped me through this whole process.

My whole world. 

As for the emotional part of the healing process, that one is a little harder. Phillip and I are drained to the core. It's been a scary ride and we have been in constant fight mode for over a year. You can't stay that way forever without it doing a little emotional damage. Phillip has been doing so much and he just amazes me every day.  A lot of people praise me and tell me how strong I have been, but honestly Phillip is the one who has been incredibly strong.  He has been doing an amazing job taking care of our family and caring for me while I am sick. I don't mean just bringing me soup and fluffing my pillow like you see in the movies. Phillip has gone above and beyond. I have never seen a more genuine act of love and heroism than what this man does for our family every day. I am so lucky and blessed beyond words to have him as my husband, best friend and father to our little girl. Phillip tells me I am beautiful every day even when I was gray and sick from chemo. He changed my bandages, emptied my drains after surgery,  helped me change my ostomy bag,  taken me to countless doctors appointments, slept on an air mattress on the floor during hospital stays and has never left my side. He has held me while I cried through panic attacks, and eased all my fears even when I know he was scared to death himself. He has washed my hair,  carried me when I didn't have the energy to walk,  fed and bathed me at times,  brought me my medications,  taken care of all the bills,  taken on the role of a single father at times when I could not get out of bed.  He does the dishes, washes the clothes and while he manages to do all of this for me, he has been an exceptional father to Elise. Most days he does all of this completely by himself without help.  He has never once complained and has done it all with a loving heart.  Of course he is human and has days where he breaks down.. We cry together, talk about our fears, and there are days we feel both feel sick from worrying so much.  But this incredible man has been my rock. He has never skipped a beat and he amazes me every day. I don't think I could love him anymore than I do today. The love we had when we first got married is nothing compared to what I feel for him now. We have grown together so much and have truly become a team. He is my hero and my best friend. A lot of people say I have been brave. I haven't. I have just been doing what the doctors have told me to do because that is my only choice. You just do it so you can be with your family. The brave ones are the caregivers. Those are the people that work tirelessly to help their loved ones through an illness while they have to sit there and watch them be in pain. This cancer has not just been my illness, it has been both of ours. He feels pain when I am in pain. He is sad when I am sad. He is terrified just as much as I am - maybe more at times. No matter how gruesome or uncomfortable any situation was that we have been through together, Phillip has never once left my side. That to me is true bravery. I am forever grateful for him and I don't know how I got so lucky to have him come into my life.

Our little family at our favorite restaurant on SSI

As a family we still have a ways to go. We haven't quite figured out how to just be US again. We are so used to being in this constant state of worrying and we haven't learned how to let go of that yet. I still get this lump in my stomach when the phone rings. I have a hard time looking at pictures of myself before my cancer diagnosis. Sometimes I hardly recognize myself in the pictures and I feel like I have lost that girl I used to be. I miss her. Back then my only worries were shedding a few pounds, wondering what to make for dinner, or not wanting to get up early for work.  I had no idea what was ahead of us. Those were the easy days. But every day I can tell I'm getting a little bit better. I know I will never be that same girl, but in a way I am grateful for that. I have learned to appreciate things so much more. I have learned to love more and enjoy the little moments that I used to take for granted.  Although Phillip and I are still experiencing a lot of anxiety, we are working hard to get that under control. I've seen a therapist to learn how to control some of my panic attacks and I am able to spot the first signs now and shorten the time and frequency of them.  Phillip has also gone to the doctor to discuss how he can control his anxiety as well. We've been trying to just put it all out of our head and do things as a family again.  This past weekend, Phillip, Elise and I went to Brunswick/St. Simons, GA to see family. We haven't seen them in a long time since we've been so wrapped up in treatments and appointments. It was good to get away. Anna, my sweet sister in law took some photos of just Phillip and I together. We haven't had any photos of just the two of us in years. I am excited to have them and I am so grateful Anna was able to do this for us. I will post some pictures soon. It was a special time for us because It really marked a huge milestone.  Elise is absolutely wonderful. She is so amazing and changing everyday. She is 16 months now and is so much fun. She is dancing and clapping. She's always so happy and could not be a sweeter baby! I never knew I could love someone so much! She is really what keeps us going. We are just so happy to be able to move on to the next chapter in our lives together. We get to just be mommy and daddy for a while and that makes us so happy.

So, all is well again in the Klapp household. I still have two outpatient procedures left and my second surgery will be in November. I still have a lot of fear about what is to come, but I am so grateful for my amazing doctors, surgeons and nurses at Shands. They have been amazing and we know I am in good hands when I am there. I will keep everyone posted on how those upcoming scopes / outpatient procedures go. Thanks again for everyone's continued thoughts and prayers. We could not have gone through all of this without you all!

Post 35: What's next?

 So a lot has been going on lately! We were able to take our short trip to the beach. That was awesome! I was so nervous about getting into the salt water with my ostomy, but I did a lot of research and found a forum about triathletes with ostomies. Well, if they can swim in a triathlon with one,  then I should have no problems playing in the water! I was excited! And I found a nice one-piece swimsuit that hid everything well :) I was pretty wiped out since I had just finished a round of chemo, but we still enjoyed our trip with family.

Unfortunately this week I am back on the yucky chemo meds. To make things a little more interesting, Elise is home with me and has Hand, Foot, and Mouth disease. I have been sending her to daycare because I am too tired during chemo to keep her all day. But she ended up getting this virus. Not fun. But we are doing ok. I am enjoying my time with her and she is really snuggly since she's not feeling well. Poor baby. But snuggling is nice.

 Also, last Wednesday  Phillip and I spent a long day in Gainesville. We had an oncology appointment first, then we met with my surgeon to discuss some things and to get a clearer plan of what comes next.

Right now I am in the middle of my 8th, and (fingers crossed) LAST round of chemo. I will be taking the yucky stuff for 14 days (July11-27th) and hopefully will be done! I am excited to get this finished before school starts back.  After all chemo is completed, we will go back to Shands on July 30th to get another scan. This is the big scan. The one that will tell us if everything is good to go for surgery. We are praying that everything will look great and we can proceed as planned.

After this scan, we will go back to Gainesville on August 6th to have "the talk" with my Oncologist to get the results from the scan.

If everything is good, I will have a nice little rest for a few weeks to recover from chemo. I am SO EXCITED about this and can't wait to get some of my energy back!!! I know it will take time. Some friends of mine who have gone through chemo say it can even take years to be totally normal again. But even after being off of my chemo meds for  as few as 10 days I can feel a huge difference. So any regain in energy and strength will make me very happy.

Before my second surgery - The Take Down - we will travel back to Shands on September 17th to have a scope done to take a good look at the inside of my J-Pouch that was constructed from my small intestine. They will check to make sure everything looks like it has healed normally. This J-Pouch will act as my new colon since I don't have one anymore. So we have to make sure it's perfect and ready to take on it's new role.

On September 26th they will do a type of a "stress test" on my J-Pouch to make sure there are no leaks. This is the test I am pretty freaked out about. It scares me to death when they describe it! It will consist of a barium enema and they will put a balloon inside and stretch it out, then put the barium ink up my rear end to do a CT scan to make sure there are no leaks. EEEK!! It REALLY freaks me out. I will be taking some happy pills that day for sure to get through that test. It's funny though because I have been through so much worse, and that particular test is the one that freaks me out the most. I'm not really sure what to say to the nurses and the technician while they do this to me? Umm....so how has your day been? Done a lot of these today? Very awkward!

My surgeon said that if all my scans and tests are good, I can have my takedown surgery at the end of November. This second surgery will be nothing like my first surgery. The first one was like 8 hours, I think. Recovery was a Doozey! Not going to lie - it was HARD! This second surgery should take a few hours and the recovery time is a fraction of the time that the first surgery required. That is good news!

 I have had my ostomy now since October and it's going to be weird going back to using the bathroom like "normal people" again. (Well sort of normal) I am definitely excited about getting rid of this bag hanging off my stomach - that's a no brainer! However, I will miss the predictability of it. Right now I don't have to run to the restroom since I have a bag. I just empty it when I need to. It's kind of convenient. So what's a few more months of having an ostomy? I never thought I would say this, but life is still pretty great with it. Once you get it right, there are times when I forget it is there. I used to think about it every minute, now I will go hours without thinking of it.

November will be a great time to have my takedown surgery. My sister-in-law is getting married in early November and I want to be able to travel. If I have my surgery before then, I don't know how I will be or if I will be able to make the car ride up to north GA. Also by having the surgery in November I will have Thanksgiving and Christmas break to recover so I won't have to miss to many days of work.

So, this Christmas - if all goes well, I will get to look at my bare stomach for the first time in 14 months. Pretty exciting. The downfall is I will basically have to re-train myself how to go to the bathroom. Not very glamorous and downright embarrassing. But by now, all embarrassment has been thrown out the window. I talk about poop all day with doctors like we chit chat about the weather.

So that's what is coming up over the next few months. We have a LONG road ahead of us. The human body is truly amazing. I still can't believe they removed my entire colon and made a new pouch with my small intestine.  It's just crazy. Sometimes I am amazed with my ostomy too. The human body is extremely resilient and can function and adapt to some crazy situations. I'm proud of my body for all the beatings it's taken lately. But it constantly heals and it's just a miracle.
With my new J-Pouch, the doctors say it could take between 12-24 months to get my J-Pouch fully functioning. I will start with very frequent bowel movements at first (kind of like my ulcerative colitis days) then over the months it should slow down.

So there ya go...It's good to have a clearer picture of what lies ahead. We still have a long way to go, but I have to remember to look at how far we've come! Thanks for everyone's continued thoughts and prayers. I am looking forward to being finished with chemo soon and starting a new school year!

Post 34: How are we doing?

It's been a whole month since the last time I wrote. Where does time go? There have been days I've wanted to write. Then I don't feel well and wait for another day.  I wish I could write about something clever or witty - maybe share a story where I put a positive outlook on a crappy moment. But the truth is, we've been having some rough days here in the Klapp household. We are all tired and drained emotionally and physically. We've just been trying to live life normally. Being mommy & daddy and trying to keep things as routine as possible. But chemo has a way of reminding you of how difficult some days can be. Today I just needed to write. I don't want to save my words for the good days and make it seem like I am always strong with my chin up. If we only show ourselves at our best moments, it makes others think that we should always put on a show and wear a fake smile.... That's just not being real. I think that when we feel beat down, bruised and scarred, that's when we can relate to eachother the best. So, I wanted to share a few updates about my treatments and how we've been doing lately.

 Phillip has been amazing and has been my rock throughout everything. But he's pretty wiped out too. He started a new job a couple of months ago, and it's been going great! But with learning the ropes of a new job, taking care of me, taking me to appointments, getting my medications, cooking, cleaning, and basically taking on all of the duties of a single parent at times, he's pretty worn out. Elise is amazing. She's so much fun and growing like a weed! She was really sick last week with a virus, but she's doing well now. She's pointing and talking all the time. She's walking everywhere and giggles and laughs at everything. She's basically our angel and she's got our hearts in her hand. We never thought we could love someone so much. As for me...I'm hanging in there. I am completely drained as well. Emotionally I've been in a rough spot. I guess it's because I had a lot of hopes and goals for the summer that didn't go exactly as planned. Our summer has turned out to be a little different than expected.

I had a lot of summer goals:
1) I wanted chemo to be over - unfortunately, we're not quite there yet. I'll explain in a bit....
2) I wanted to make up for all the lost time with Elise. I wanted to be super mommy and play all day, and have loads of fun since I haven't been able to do a whole lot this past year since she's been born. 
3) I wanted to spend more time with my friends and family.
4) I wanted to work on getting stronger before my next surgery. Start excercising and feeling better. I've lost a lot of muscle during chemo treatments and I am pretty weak and worn down.
5) I wanted to get my photography business back on track, and focus on new projects for my students for the upcoming school year..
6) Big plans to reorganize my closets. Get rid of old stuff - out with the old & in with the new.
You know, the usual "I'm going to have a super productive summer" attitude :)


Well, my body said "NO - absolutely NOT!!" My body wouldn't allow me to do much more than stay put and rest, while my mind constantly races about what I want to do. It's quite frustrating and upsetting. I am the type of person who doesn't like to sit still all day. I want to get out and do things! But I have been too sick lately with additional treatments. A couple of weeks ago at my last oncologist visit we were told I will need a couple more rounds of chemo. YUCK. It was originally 6 months of chemo, but now it will be 8 months. This really bummed us out. Phillip and I were just celebrating that the hard part was finally over!! We walked into our past appointment with high hopes that I was finished and could schedule my next surgery. I had plans to spend the months of July and August healing and getting stronger, being super mommy.....you know - doing all the stuff listed above.

That would have been too easy. Since I have had major side effects from my chemo treatments, they had to give me some longer breaks in between rounds so I could heal. My hand & foot syndrome was causing the most problems. After each round the whole sole of my foot would blister and bubble up. Then it would all peel and I would lose thick layers of skin on the bottom of my feet. It has been pretty painful and has left me unable to walk some days. But to look on the bright side, I have baby smooth foot soles! It's like getting a deep chemical peel pedicure once a month. (I am sooo lying right now. It hurts!!) When my feet do this, my doctors won't let me start another round until they completely heal. This gets me behind on my treatments. They also had to lower my dose...again. I metabolize this stuff in a weird way and I am SUPER sensitive to the drug. So since I had a longer break between some of the rounds and a dose lowering, they said I have to do 8 months of treatments instead of 6.  Not happy. Could be worse though. At least I am here with a great prognosis. And, I still have my hair. That is good. My hair has changed color and texture. It is definitely thinner too. But at least I still have it. The chemo drug Xeloda that I take is pretty good about letting you keep your hair. The other side effects, well, they are horrible. The stomach issues, skin problems and fatigue are no joke. But I am learning how to deal with them as they come. It is what it is at the moment.....

I just finished my 7th month /round and I am beyond drained. Emotionally and physically. It's definitely been getting harder with each round. I have been experiencing a lot of body and joint pain. Lots of nausea, appetite problems, weight loss and extreme fatigue. This fatigue is like nothing I have ever experienced. Getting a gallon of milk out of the fridge to make Elise a bottle feels like I am lifting a ton and running a marathon. I can't carry Elise across the house. Thank goodness she is walking. We have been sending her to school/ daycare during the day because I do not have the strength to take care of her by myself. This hurts my heart more than anything. But, I know she LOVES school though and she gets super excited when she sees her friends.

Since I have finished the 7th round, I will have about a week off before I start my 8th round. We are planning to go to the beach with my mom and sister and her husband to have a little down time. This will be our first trip to play at the beach since Phillip and I went on our honeymoon. We can't wait to see how Elise will react to the sand and water! So we will have some time to rest and hopefully re-coop a little bit before this last round. I will then will have a visit to Shands on the 11th with my Oncologist and my surgeon, and then I will start my last treatment.

I will keep everybody updated after my appointment. So as of right now we are just living life and trying to savor every good moment. Happy 4th of July everyone! Lots of love to you all.

Post 33: Last round....here we go!



It's been a while since I have written.
But this is it..... If all goes well - this is my last round of chemo.

I'm excited, terrified, happy, relieved, and anxious. So many emotions all rolled into one.
It's strange. As much as I desperately want this to be over, chemo was kind of like a safe zone where I could stay in limbo. I feel weird even saying that. No real surgeries or procedures & tests could be performed during these past 6 months. No one could call me to tell me anymore bad news than what I have already heard. I don't jump when the phone rings anymore. I've kind of been left alone by doctors for a littel while during chemo because nobody really wants to mess with you when you're on these drugs. But now it's all about to be over. This is a proud moment for us as a family. We can almost say, "We did it!"

 The dark days of chemo are about to be over.

I am so thankful and my heart is FULL.

I can finally take a deep breath.....almost.

So what comes next ? I will get about 6-8 weeks of rest from chemo before my next surgery. Before my takedown surgery I will have to have some more tests and procedures done. I'll explain those when they happen. I'm not even sure of all the details, and to be honest I'm not sure I want to know. I am scared of being in the hospital again. I'm tired of needles and drugs. I don't want to be in pain anymore. I am terrified of more bad news. But I have to keep telling myself how far we've come. The worst part should be over, right? I pray that it is. After my next surgery, recovery time will come with it's own set of challenges and missing another 8 weeks of work. But after that, we hope to be able to get back to a fairly "normal life."

I love my silly little familly

Normal for us has definitely changed. As a family, we've grown and learned so much from this journey. We've learned we just have to adjust to what life throws at us, and that becomes the new norm. We've really tried to focus on just living life and enjoying all the good moments. That part has been a blessing. During chemo, one can experience the darkest of days. There have been moments where I don't think I can handle anymore. But we've arrived to this place.

The last round.

Finally.

Looking back almost a year ago I didn't know if I could do it. I remember sitting in the oncologist's office crying on the couch while Phillip held my hand. We wondered how are we going to get through this with a new baby? We couldn't believe I was a "cancer patient." It was all just so surreal. We've come so far and we've done it together. I used to think of chemo treatments as losing 6 months to a year of my life. But those kinds of thoughts don't go through my head anymore. We've been living it up and doing the best we can. If I have a good day, we take advantage of it and do as much as we can. Some days I have to take it easy and I can't do a whole lot. Some days are spent doing nothing but laying in bed feeling like hell. But those days are part of my life right now. The tough days deserve the respect that every other day gets. Those moments are not seen as a "pause" in my life anymore. They are part of our life that we just work through together. Now I see them as moments that have brought our family even closer. Moments where I fall in love with my husband all over again. Moments where we cry together and assure eachother that we are a team. We WILL get through this. Those are the times where I have cherished my baby girl's smile like no other. Those moments are what life is about. The good, the bad and the ugly times all have moments of grace and beauty that will be etched into my memory forever.

Phillip & I after photographing a wedding.

Elise's 1st birthday

The past couple of months have been filled with so much happiness. Birthday celebrations (Elise turned one!) engagements, marriage celebrations, dancing and laughing, milestones like watching my baby girl take her first steps! I photographed a wedding, finished up a school year that I thought I wouldn't even be able to complete and was named teacher of the year for my school. I've been able to help a new fellow ostomate during her times of struggle. I've been able to bond with other cancer survivors and make new friends. Iv'e learned how to roll with the punches a little more, and know when to walk away when someone is saying something that hurts me now. I've learned to not be afraid to live life. It's been a beautifully busy month. Yes, I've had some rough patches, but I am still here. I'm still fighting and strong. I've had a lot of time to think. I desperately search for a reason and a purpose as to why all of this has happened. Maybe it's so I can be here to help somone else, maybe it's a wakeup call for me to live and love life to the fullest.

 So, 12 more days. I know these next couple of weeks will be difficult. But I am ALIVE. I am still here, my litle girl is happy and healthy. I have the love of my life by my side, and  I am surrounded by true friends, amazing co-workers and family so committed to seeing me through this through.

It's difficult....but not impossible.

12 more days.