tag:blogger.com,1999:blog-16890164346677609492024-03-01T11:36:36.825-08:00My UC StoryMy perspective as a new mom and wife, living with ulcerative colitis & being diagnosed with colon cancer.Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.comBlogger40125tag:blogger.com,1999:blog-1689016434667760949.post-89173096438396918002012-12-30T02:32:00.002-08:002012-12-30T03:28:48.726-08:00Healing Scars: 6 Weeks Post Reversal Surgery<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhClBkRgKmoIJw35zjJYt4ufSBrnx_mhPdUbqSk0_F2EFftsYq_exbhgvGzobVfCUeXAvVnTr3x2ncZFBx6vOit5VkgKdy7J7R2Kv57gcOZOUmmcqtGy8X-lv102qbwx-W7Qtxsl8Xz1e59/s1600/mom+elise.PNG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhClBkRgKmoIJw35zjJYt4ufSBrnx_mhPdUbqSk0_F2EFftsYq_exbhgvGzobVfCUeXAvVnTr3x2ncZFBx6vOit5VkgKdy7J7R2Kv57gcOZOUmmcqtGy8X-lv102qbwx-W7Qtxsl8Xz1e59/s320/mom+elise.PNG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mommy & Elise December 2012-<br />
Six weeks post surgery and feeling great!<br />
So happy and grateful! </td></tr>
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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....<br />
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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. <br />
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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 :)<br />
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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!! :) <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsoUi_pWLdZLSHgPzK9QDoqj-wtQlxq0dCNJhGOEbE_LyGagSgaEwvNEMTBHbOq1DVzCUqdRkUJpzbuwm2K8gryXSmjYgau_8cFsdfxRqPsaM1h4ockWLvf7HJFXDXjyrPcYFMMwF9JDHF/s1600/1+week.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsoUi_pWLdZLSHgPzK9QDoqj-wtQlxq0dCNJhGOEbE_LyGagSgaEwvNEMTBHbOq1DVzCUqdRkUJpzbuwm2K8gryXSmjYgau_8cFsdfxRqPsaM1h4ockWLvf7HJFXDXjyrPcYFMMwF9JDHF/s320/1+week.JPG" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">one week post reversal with a swollen belly, <br />
pinrose drain and staples. Gross and painful. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvUvUOjzm4c0tmvZyioTaFNdG27kzFHAm-IuoNYt9R7BwqeZBDdgJ31joNoaV0qAlNlcLvRyi2ZqR9ckcw7J4dRpWpUmWlA0EdhaaRHlJKuXjcnmzpnHWm3i_lduM8gw8QMqdePZ9MvEBQ/s1600/hair.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvUvUOjzm4c0tmvZyioTaFNdG27kzFHAm-IuoNYt9R7BwqeZBDdgJ31joNoaV0qAlNlcLvRyi2ZqR9ckcw7J4dRpWpUmWlA0EdhaaRHlJKuXjcnmzpnHWm3i_lduM8gw8QMqdePZ9MvEBQ/s320/hair.JPG" unselectable="on" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">lots of hair loss from chemo, but my hair is growing back in<br />
I have lots of baby hair in the thin spots so hopefully it<br />
will be back to normal soon! I put volumizing mousse in<br />
it and curl it to keep it looking fuller. Most people would<br />
never know unless they knew how much hair I had before. </td></tr>
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFqBbbKVFlu2A2xafFDkm7gO1Ue_XVgwDmwLyVI-siTekkzl34m37c5X23HDSiaOUP-Y0wVe6xZA3smFVpdg7mZmV0v5CPxUjxxt3oVtHRGCDeVgam5yIVFpKLbUuU0rA917iXSzqTN0Pz/s1600/3+weeks.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="241" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFqBbbKVFlu2A2xafFDkm7gO1Ue_XVgwDmwLyVI-siTekkzl34m37c5X23HDSiaOUP-Y0wVe6xZA3smFVpdg7mZmV0v5CPxUjxxt3oVtHRGCDeVgam5yIVFpKLbUuU0rA917iXSzqTN0Pz/s320/3+weeks.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">3 weeks post surgery, drain out, still have staples. You can see<br />
my C section like scar from the first surgery. It healed well!<br />
I have lots of other small scars from the the scopes and other<br />
drains they put in for the last surgery. 7 scars total. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHbjARcYzGMhwR7wsqslchWacqNtGpTZ0Oq-ldVBP2qOEGKHv_sWhhLjZgLEI9G9y5V035Up1A9yARRhdFG_4ac8hd_dDHmhs2jNN09g-doZJI7yd5nvmZbPEN_J7O6fLtPdjLB__Jwfj-/s1600/4+weeks.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHbjARcYzGMhwR7wsqslchWacqNtGpTZ0Oq-ldVBP2qOEGKHv_sWhhLjZgLEI9G9y5V035Up1A9yARRhdFG_4ac8hd_dDHmhs2jNN09g-doZJI7yd5nvmZbPEN_J7O6fLtPdjLB__Jwfj-/s320/4+weeks.JPG" width="312" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is where it got gross- I had my staples removed and they <br />
used silver nitrate to remove any scabbed skin. It left me with a <br />
painful open hole in my stomach. Surprisingly, it healed <br />
very quickly after this. Still putting bandages on it twice a day. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFWcuj1NTtFaSTFqUfCyC3XdtR_u_kCFNuvBuBGA17AQgvNIUp96iNaJ3Jc3nHOsJeEBkB8GF-ghy_d4S4VsEypsP38ED1JhMk57t5bfIQkEAS7CR6JP-lg36vx6XiRHLpXfGbMpKHXf2j/s1600/bandage.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="249" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFWcuj1NTtFaSTFqUfCyC3XdtR_u_kCFNuvBuBGA17AQgvNIUp96iNaJ3Jc3nHOsJeEBkB8GF-ghy_d4S4VsEypsP38ED1JhMk57t5bfIQkEAS7CR6JP-lg36vx6XiRHLpXfGbMpKHXf2j/s320/bandage.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All bandaged up, but excited to no longer have an ostomy bag!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgukBq0r1Ce2hBRPRTZSvafCncJfkYAmCtXgRfeRTlhU5K3q0AMCZOv9f0VZ0KM3jdmbHkqIbg47mjeGIt8i3T5d3WwVSa7pDph9jLlODoVL9vxI6WPSZc1BjaD1lWX-MYvA92rdLDJsN37/s1600/5+weeks.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgukBq0r1Ce2hBRPRTZSvafCncJfkYAmCtXgRfeRTlhU5K3q0AMCZOv9f0VZ0KM3jdmbHkqIbg47mjeGIt8i3T5d3WwVSa7pDph9jLlODoVL9vxI6WPSZc1BjaD1lWX-MYvA92rdLDJsN37/s320/5+weeks.JPG" width="320" /></a></div>
5 weeks - big improvement! Swelling is going down and it <br />
is starting to close up!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJc6sLQJEhYskTiU4TQl95dOgQQIUsCI-VWChOXc7Su8uGBeqKnLRjRWBbjXIUOFEUf7f4UpqYik9t3eYouoSvBBvV4UejZy7LJXfOjQtpH5BdpWNJSZ0DvJaV7VbhrcfDoZFyQOhUre9G/s1600/6+weeks.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="206" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJc6sLQJEhYskTiU4TQl95dOgQQIUsCI-VWChOXc7Su8uGBeqKnLRjRWBbjXIUOFEUf7f4UpqYik9t3eYouoSvBBvV4UejZy7LJXfOjQtpH5BdpWNJSZ0DvJaV7VbhrcfDoZFyQOhUre9G/s320/6+weeks.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">6 weeks and my stomach is starting to look more normal.<br />
The swelling has gone down more and I don't <br />
needing bandages anymore! It is completely closed<br />
and I never had any infection. It is still very tender and sensitive<br />
to hot and cold, but for the most part, it is looking good! <br />
I am enjoying wearing clothes that fit closer to my stomach now! :)</td></tr>
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Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com3tag:blogger.com,1999:blog-1689016434667760949.post-71527937537422380002012-11-28T15:42:00.002-08:002012-11-28T17:35:29.258-08:00Post 38: Goodbye Ostomy & my new life with a J-Pouch<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><img height="320" id="il_fi" src="http://mylifewithcrohns.files.wordpress.com/2009/04/jpouchdrawings.jpg?w=497" style="margin-left: auto; margin-right: auto; padding-bottom: 8px; padding-right: 8px; padding-top: 8px;" width="258" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I am now at the final stage on this diagram (C/D)</td></tr>
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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. <br />
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I was in the hospital for a total of 5 days and here's how the past several days have been going:<br />
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<b>Saturday, November 17th</b><br />
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. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLlsUG2yUDsaVt6C2lIab75oMe_WkNtalsR2VwKV9y7KeKdPaN0ntVvAWd0RuNVn7g4bAg556GOzREK9HB5J1GQcFHZLDBNNfn95bbJQ3Z4ZigjaQNYNCRSYR6WDwlVcrPmcEPnhMqw8zo/s1600/IMG_0898.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLlsUG2yUDsaVt6C2lIab75oMe_WkNtalsR2VwKV9y7KeKdPaN0ntVvAWd0RuNVn7g4bAg556GOzREK9HB5J1GQcFHZLDBNNfn95bbJQ3Z4ZigjaQNYNCRSYR6WDwlVcrPmcEPnhMqw8zo/s320/IMG_0898.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Elise at Thanksgiving Dinner. </td></tr>
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<b>Sunday the 18th-</b> 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 <i>don't have a colon!</i> It's much easier to prep when you don't have a colon! I know you all are so jealous. Haha.<br />
Just nothing after midnight.<br />
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<b>Monday the 19th</b>- Had to arrive at Shands for surgery check-in and was taken back around 5:30PM. LONG day with no water :(<br />
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.<br />
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<b>Tuesday the 20th to Wednesday the 21st-</b> 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.<br />
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<b>Thursday the 22nd</b> -Things got moving so I could have a liquid diet<br />
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<b>Friday the 23rd</b>- 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 "<i>what have I done!! I just want my ostomy back!!!</i>" 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.<br />
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<b>Saturday the 24th</b>- 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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLxPCbB16QTc0nC_wswwMoy5ETL9U0YK7S4e7BB3HXhZSWyJrF-SYjLxTsMANij8locugM_mlY9DdfwMWQB2WoUATWkdddvQhYWyl4e5ygGY3wI07AX8vAfQjifewkNbV6QCcymIAKpuJM/s1600/photo.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLxPCbB16QTc0nC_wswwMoy5ETL9U0YK7S4e7BB3HXhZSWyJrF-SYjLxTsMANij8locugM_mlY9DdfwMWQB2WoUATWkdddvQhYWyl4e5ygGY3wI07AX8vAfQjifewkNbV6QCcymIAKpuJM/s320/photo.JPG" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hey look!! No BAG!!!<br />
Eight days after surgery-<br />
bandaged up and on the mend.</td></tr>
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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. <br />
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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<b> hardest times in my life</b>. 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 <i><b>having an ostomy is not the end of the world, and in fact you can have a pretty awesome, normal life with one</b></i>.<br />
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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 <i>new normal</i>. 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......<br />
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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.<br />
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<b>DEEP BREATH. It's all going to be ok :) </b><br />
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<b>Posted below is the video Phillip and I made just a day before my reversal surgery. </b><br />
<b>(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) <i>But this is me and how I've been living for the past year.</i> </b><br />
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<b>Goodbye Ostomy! I already <i>don't</i> miss you :) </b><br />
<b>A previous post I did listing all of the products I use can be found <a href="http://theklappfamily.blogspot.com/2011/12/bags-pouches-appliances.html">HERE.</a> </b><br />
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<b>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 <a href="http://ostomyoutdoors.com/">OstomyOutdoors.com</a> </b><br />
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<a href="http://youtu.be/GnmIA0luoBw" target="_blank"></a>Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com2tag:blogger.com,1999:blog-1689016434667760949.post-51200585918249362422012-09-19T09:07:00.000-07:002012-11-27T11:11:45.565-08:00Post 37: A year ago today.<br />
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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 -<i> today</i>.<br />
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I am so grateful for today.<br />
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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 <i>scheduler</i> and I like to have things <i>written down</i>, in my little <i>calendar </i>and <i>planned</i>. 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, <i>"life is what happens while you are making other plans." </i>How true it is!!<br />
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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.<br />
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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 <i>"you have cancer."</i> 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 - <i>cancer free</i>. 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!<br />
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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 <i>was </i>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> I was sure I didn't want to be sedated</i>? 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 <i>did in fact have cancer</i>. 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.<br />
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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 <a href="http://theklappfamily.blogspot.com/2011/09/official-diagnosis.html" target="_blank">HERE</a> 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.<br />
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Again, we just want to thank everyone for all of your thoughts, prayers & support. Today is a good day :)<br />
I love you all!<br />
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Another post to play catch up......<br />
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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!<br />
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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! :)<br />
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<span style="font-family: inherit;"><span style="background-color: white;">Wednesday (Sept. 12) I had my pouch-o-gram. Lets just say it um.....well, it <i>went.</i> 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. </span></span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><br /></span></span><span style="font-family: inherit;"><span style="background-color: white;"> 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, "<i>Ohhh..</i>..then asked for my photo ID. </span></span><span style="font-family: inherit;"> Phillip made a joke about "</span><i style="font-family: inherit;">yeah, gotta make sure it's her so no one can sneak in there and get a free enema!</i><span style="font-family: inherit;">" I love my husband so much. He always makes me laugh even when we are in the most awkward situations. She laughed saying </span><span style="font-family: Verdana, sans-serif;">"Yep! People are lined up at the door for those things!"</span><span style="font-family: inherit;"> I realized then, that I didn't quite know what I was in for. Just how bad is this going to be!?? </span><br />
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<span style="font-family: inherit;"><span style="background-color: white;">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.</span></span><br />
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<span style="font-family: inherit;"><span style="background-color: white;">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. </span></span><span style="background-color: white; font-family: inherit;">Usually at the beginning of every doctors visit, ER trip....basically anyone I speak to who is </span><i style="font-family: inherit;">not</i><span style="background-color: white; font-family: inherit;"> 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.)</span><br />
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<span style="font-family: inherit;"><span style="background-color: white;">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. </span></span><br />
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<span style="background-color: white;"><span style="font-family: inherit;">They ask </span><span style="font-family: Trebuchet MS, sans-serif;">"So, what surgery did you have done?"</span></span><br />
<span style="background-color: white; font-family: inherit;"><br /></span><span style="background-color: white; font-family: inherit;"><i>"I had a J-Pouch surgery or what's called an ileal pouch-anal anastomosis."</i></span><br />
<span style="background-color: white; font-family: inherit;"><br /></span><span style="background-color: white;"><span style="font-family: Verdana, sans-serif;">"Hmm...OK"</span><span style="font-family: inherit;"> looking at chart......long pause.</span></span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><br /></span><span style="background-color: white;">Not seeing the light bulb go off , <i>" Basically they removed my colon and created a new internal pouch with my small intestines that will sort of serve as my new colon</i></span></span><span style="background-color: white; font-family: inherit;"><i>."</i></span><br />
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<span style="background-color: white;"><span style="font-family: inherit;">There's the light bulb moment! </span><span style="font-family: Trebuchet MS, sans-serif;">"OH! OK! So then what is the surgery you are having soon and what procedure are you having done today?"</span></span><br />
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<span style="font-family: inherit;"><span style="background-color: white;"> 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 <i>"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..." - </i>insert name of procedure here.</span></span><br />
<span style="background-color: white; font-family: inherit;"><br /></span><span style="background-color: white;"><span style="font-family: inherit;">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 </span><span style="font-family: Trebuchet MS, sans-serif;">"Oh, I'm so sorry. You are so young!" </span><span style="font-family: inherit;"><span style="font-family: inherit;">Then I pr</span>ay they won't tell me a story about someone they knew who had colon cancer.</span></span><br />
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<span style="font-family: inherit;"><span style="background-color: white;">I smile politely<i> "Yes, thank you</i>"......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. </span></span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><br /></span><span style="background-color: white;">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>"I have no colon.</i>" </span></span><br />
<span style="background-color: white; font-family: inherit;"><br /></span><span style="background-color: white;"><span style="font-family: Verdana, sans-serif;">"You don't have a colon?"</span><span style="font-family: inherit;"> 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. </span></span><br />
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<span style="background-color: white; font-family: Verdana, sans-serif;">"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......</span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><br /></span><span style="background-color: white;">I interrupt, "<i>I have NO COLON. My J-Pouch is connected to my rectum and I do not have a colon anymore. I have a bag.</i>" Pointing to my stomach. </span></span><br />
<span style="background-color: white; font-family: inherit;"><br /></span><span style="background-color: white; font-family: Verdana, sans-serif;">"Is there a portion of your colon left?. . ."</span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><br /></span><span style="background-color: white;"><i>"No there is not. Its gone. I don't have a colon."</i></span></span><br />
<span style="background-color: white; font-family: inherit;"><br /></span><span style="background-color: white; font-family: Verdana, sans-serif;">"So what do you. . ." </span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><br /></span><span style="background-color: white;"><i>"Basically my small intestines are connected to my rectum."</i></span></span><br />
<span style="background-color: white; font-family: inherit;"><br /></span><span style="background-color: white; font-family: Verdana, sans-serif;">"Oh what?! Well, how do you.....?"</span><br />
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<span style="font-family: inherit;"><span style="background-color: white;"><i> "I have an Ileostomy - a bag attached to my stomach.....</i></span></span><br />
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......Crickets sound.....<br />
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<span style="font-family: inherit;">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." </span><br />
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<span style="font-family: inherit;">YES! <i>PLEASE</i> get someone else who understands what's going on. Maybe they are just as flustered as I am?</span><br />
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<span style="font-family: inherit;"> It is pretty draining to say the least when I have these conversations with medical professionals. </span><span style="background-color: white;">Occasionally</span><span style="font-family: inherit;">, 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. </span><br />
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<span style="font-family: inherit;"><span style="background-color: white;">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. :) </span></span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><br /></span><span style="background-color: white;"></span><span style="background-color: white;">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!!!!! </span></span><br />
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<span style="background-color: white;"><span style="font-family: inherit;">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 </span><i style="font-family: inherit;">get me</i><span style="font-family: inherit;"> to </span><i style="font-family: inherit;">fall </i><span style="font-family: inherit;">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</span>. 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. </span><br />
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<span style="background-color: white;">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.</span><br />
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<span style="background-color: white;">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. </span><br />
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<span style="background-color: white;">Love you all and thanks for your amazing support. </span><span style="background-color: white;">I will keep you all updated on our next appointments. </span><br />
<br />Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com1tag:blogger.com,1999:blog-1689016434667760949.post-73513090172176363072012-08-21T18:00:00.000-07:002012-08-22T13:17:13.811-07:00Post 36: The start of a new chapter.<div class="separator" style="clear: both; text-align: left;">
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<tr><td class="tr-caption" style="text-align: center;">Elise 15 months with a cancer free mommy</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">My last dose of chemo!</td></tr>
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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.<br />
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<tr><td class="tr-caption" style="text-align: center;">Back in my classroom for another year of teaching! </td></tr>
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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.<br />
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<tr><td class="tr-caption" style="text-align: center;">My whole world. </td></tr>
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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 <i>my</i> illness, it has been <i>both </i>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.<br />
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<tr><td class="tr-caption" style="text-align: center;">Our little family at our favorite restaurant on SSI</td></tr>
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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.<br />
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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!<br />
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<br />Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com0tag:blogger.com,1999:blog-1689016434667760949.post-46475068623862104312012-07-18T11:53:00.000-07:002012-07-18T12:02:24.161-07:00Post 35: What's next?<div class="separator" style="clear: both; text-align: center;">
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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<i> triathlon </i>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.<br />
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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.<br />
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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. <br />
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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 <span style="background-color: #fff2cc;">(July11-27th)</span> 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 <u style="background-color: #fff2cc;">July 30th</u> to get another scan. This is the <i>big scan</i>. 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.<br />
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After this scan, we will go back to Gainesville on <u style="background-color: #fff2cc;">August 6th</u> to have "the talk" with my Oncologist to get the results from the scan. <br />
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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. <br />
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Before my second surgery - <i><a href="http://knowguts.wordpress.com/2011/09/27/takedown-breakdown/" target="_blank">The Take Down</a></i> - we will travel back to Shands on <u style="background-color: #fff2cc; color: black;">September 17th</u> to have a scope done to take a good look at the inside of my <a href="http://www.j-pouch.org/Whatis.html" target="_blank">J-Pouch</a> 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. <br />
<br />
On <u style="background-color: #fff2cc;">September 26th</u> 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! <br />
<br />
My surgeon said that if all my scans and tests are good, I can have my <a href="http://knowguts.wordpress.com/2011/09/27/takedown-breakdown/" target="_blank">takedown</a> 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!<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
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.<br />
<br />
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!<br />
<br />Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com0tag:blogger.com,1999:blog-1689016434667760949.post-23185064573487736482012-07-02T14:40:00.000-07:002012-07-12T13:32:02.727-07:00Post 34: How are we doing?<br />
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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.<br />
<br />
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 <i>everywhere</i> 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. <br />
<br />
I had a lot of summer goals: <br />
1) I wanted chemo to be over - unfortunately, we're not quite there yet. I'll explain in a bit....<br />
2) I wanted to make up for all the lost time with Elise. I wanted to be <i>super mommy</i> 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. <br />
3) I wanted to spend more time with my friends and family.<br />
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.<br />
5) I wanted to get my photography business back on track, and focus on new projects for my students for the upcoming school year..<br />
6) Big plans to reorganize my closets. Get rid of old stuff - out with the old & in with the new.<br />
You know, the usual "I'm going to have a super productive summer" attitude :)<br />
<img alt="" aria-busy="false" aria-describedby="fbPhotosSnowliftCaption" class="spotlight" height="400" src="http://sphotos.xx.fbcdn.net/hphotos-ash3/599668_10150899649808517_1380851101_n.jpg" style="height: 612px; width: 612px;" width="400" /><br />
<br />
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 <i>really</i> 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.<br />
<br />
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<a href="http://www.chemocare.com/managing/handfoot_syndrome.asp"> hand & foot syndrome</a> 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 <a href="http://www.drugs.com/sfx/xeloda-side-effects.html">Xeloda</a> 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. <i>It is what it is</i> at the moment.....<br />
<br />
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. <br />
<br />
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.<br />
<br />
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. <br />
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<br />Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com2tag:blogger.com,1999:blog-1689016434667760949.post-64356102640023979322012-05-29T15:04:00.005-07:002012-07-12T13:31:50.435-07:00Post 33: Last round....here we go!<br />
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<br />
It's been a while since I have written.<br />
But this is it..... If all goes well - this is my last round of chemo. <br />
<br />
I'm excited, terrified, happy, relieved, and anxious. So many emotions all rolled into one. <br />
It's strange. As much as I <i>desperately</i> want this to be <i>over</i>, 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!"<br />
<br />
The dark days of chemo are about to be over.<br />
<br />
I am so thankful and my heart is FULL. <br />
<br />
I can finally take a deep breath.....almost. <br />
<br />
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 <i>is</i>. 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." <br />
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<tr><td class="tr-caption" style="text-align: center;">I love my silly little familly</td></tr>
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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. <br />
<br />
The last round. <br />
<br />
Finally.<br />
<br />
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. <br />
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<tr><td class="tr-caption" style="text-align: center;">Phillip & I after photographing a wedding. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Elise's 1st birthday</td></tr>
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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,<i> but</i> 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.<br />
<br />
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. <br />
<br />
It's difficult....but not impossible.<br />
<br />
12 more days. <br />
<br />Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com0tag:blogger.com,1999:blog-1689016434667760949.post-70259896559932554842012-04-27T05:31:00.000-07:002012-07-12T13:31:39.355-07:00Post 32: It was the best of times.....<div class="separator" style="clear: both; text-align: center;">
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<i><i><i><i><i><i><i><i><i><i><i><i><i><i><i>It was the best of times, it was the worst of times</i>.....<span style="font-family: inherit;"><i> it was the season of Light, it was the season of Darkness, it was the spring of
hope, it was the winter of despair....</i><span style="font-size: xx-small;">(Charles Dickins)</span><i> </i>those words describe the past year perfectly. A year ago our baby girl, Elise was born. April 26th, 2011. It was the happiest day of our lives. I had been sick and I knew in my heart something wasn't right. But my doctor told me to come back 6 weeks after Elise was born for more tests. This 6 weeks of normalcy was such a gift. I am so grateful for those moments where I could just focus on being a new mommy. That was the last time I felt "normal." I didn't have a care in the world other than being a new family. Phillip and I were so excited to be parents. This little girl has brought us so much happiness in the past year, and I don't know what we would have done without this angel. She is everything to us. Our light, our hope, our purpose. She makes every surgery, every pill, every test I have to endure, and every bit of stress we have gone through worth it. I will do anything I have to to make sure Phillip and I will grow old together. I want to see Elise find the love of her life like I have. I want her to experience these same feelings of joy and overwhelming love that I have for her if she chooses to have a little one someday. I want to know that I have done everything in my power to be with my family as long as I can. There have definitely been moments that are so dark I don't know how I will get out of them. But there have also been moments where I am so happy I feel like my heart might burst. Moments where I feel like I am the luckiest person on the planet. Happy birthday my sweet baby girl. We love you more than we can even express. </span></i></i></i></i></i></i></i></i></i></i></i></i></i></i></div>
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<br />Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com1tag:blogger.com,1999:blog-1689016434667760949.post-88359333781892981772012-04-23T13:38:00.001-07:002012-07-12T13:31:24.178-07:00Post 31: What NOT to say.Last night I found myself in an ugly place. I was being mean to my husband. I was complaining about anything and everything. I ended up an emotional mess. I was angry. I couldn't put my finger exactly on what I was mad at, but I was just REALLY ANGRY. I think I was angry at my body. I was sick of the days being so difficult. I just wanted to feel normal. I was taking it all out on Phillip and then I realized I am being mean to the person who is my best friend, who takes care of me. The one who is there for me at my darkest moments. The person who loves me unconditionally even when I am mean and don't deserve to be loved. I then realized I was mad for another reason. I was angry with <i>people</i>. I wanted to write about a few things people say to me that just really upset me.<br />
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I recently started seeing a counselor about my anxiety issues I've been having this past year. I haven't found myself being plagued with fear about my health issues quite as much anymore - right now I am having more social anxiety and I've been avoiding people - which isn't like me. There are times when I have spotted someone I know at the grocery store and I literally run and hide in another isle because I am afraid I will be stuck at Publix talking about cancer for an hour. Since I've been going to counseling I have learned that I need to be more assertive and control where the conversation leads. So this blog entry was my little assignment from my counselor. Sometimes I wish I could be more outspoken and just tell people when they have hurt my feelings. But I just grin and bear it. I usually just nod my head while they run their mouth, tune them out, smile and take it because I don't want to make <i>them </i>feel uncomfortable for being an insensitive person. Then I go home and take it all out on my husband, cry and tell him what people have said to me. I know this doesn't make any sense. Unfortunately by me doing nothing about it, I am also teaching people that it's okay to treat me this way and that it's alright to say things that hurt me. In counseling I have also been learning different ways to change the conversation, or just simply walk away if someone is being ugly to me. I think they will eventually get the point that I am not going to talk about it anymore with them. </div>
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Let me be clear and say this post is not about everyone who asks me how I am, or lets me know they are thinking about me or praying for me. I am not speaking of the sweet people who cheer me on and come up to me and hug me and greet me with a smile and are genuinely concerned. I LOVE you all and am so grateful to have you in my life. <b>So, I am speaking to the naysayers</b>.... This post is for the people who feel this need to talk about death and suffering every time they see me and I end up comforting <i>them</i>. Those who think I wear a sign at the grocery store that says "talk to me abut cancer in public." Those who ask me how I am doing, not because they <i>care</i>, but because they are nosy and want the latest gossip. This post is for those who never smile at me anymore and come towards me with a sad face saying, "<i>aaaaaawww :( Oh you poor thing....</i>" I don't want pity or for you to look at me like I am dying. I don't want to talk about how I remind you of someone you knew who suffered through chemo, or someone you know who fought cancer but died in the end. I DON'T WANT TO HEAR THESE STORIES. You would be surprised how often people do this. If you have said these types of things to me, I don't need you to come to me after reading this and apologize or tell me you feel bad. I don't care. I'm not going to make you feel better and say it was okay that you said those things to me. I am posting this in hopes that you will STOP and leave me alone, or at least think before you speak. You might be the nicest person in the world with all the best intentions. You might be concerned or don't know <i>what</i> to say. Maybe you feel like if you don't say <i>anything at all</i> I will think you don't care. Sometimes when a person is going through a difficult time, all they need is a hug and for you to tell them you are thinking of them / praying for them / love them. <b>That's it</b>. No profound words are needed. No stories of death are needed to make my situation seem "better." I would rather you just leave me alone if that is all you can think of when you see me. Just talk about the weather, ask about my family, talk about something that is going on in your life. Please stop talking to me about cancer and death. Instead celebrate with me, be happy for me that I am doing the best I can.</div>
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Another issue I am having is people telling me how "<i>bad or sickly I look"</i>. <b>At least</b> once a day I get the sad face, then I hear I <i>"look gray, or tired, I look weak, sickly, or my eyes look droopy.</i>" Yes, seriously people say this to me everyday. I get questions like, <i>"are you okay? you look kind of grey and sick.</i>" or "<i>are you tired, you look like you don't feel good today.</i>" or "<i>you're wasting away, you need to eat more".</i> Of course I am tired. Of course I don't feel good. Would you like to eat when you feel sick? Chemo is no walk in the park. But I am TRYING and FIGHTING. When people say things like this to me it hurts my feelings so much and I am sick of hearing it. Would you normally insult a woman and tell her how bad she looks? Why is it okay to tell a person who you know is going through a rough time how bad they look? As women, we need to build each other up and support each other. Not say things that make us feel insecure or ugly. </div>
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So I am done with trying to make you feel comfortable while your comments cause me to be in pain. To paint you a better picture of how much it hurts my feelings, this is what my morning is like before you say something like that to me:</div>
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At 6am I can barely get out of bed because I feel horrible. I spend 30 minutes trying to force down a piece of bread so I can take my chemo medicine so I won't throw up. I probably cried before I got dressed because my body hurts so badly and I am exhausted from not being able to sleep. I can't find anything to wear because I have lost so much weight from being sick. I can't take a hot shower because of my hand and foot syndrome and the blisters on my skin. Just thinking about getting ready has exhausted me and I just want to go lay back down. Instead, I wash my face, put on my makeup and try to pull myself together. I put on a pretty dress so I can feel a little bit better about myself. I leave the house with hopes that if I look alright maybe people will treat me like I am a normal person and not treat me like I am sick. I psych myself up hoping it will be a good day and I feel pretty for a second in my dress. Then a person comes and basically tells me how crappy I look? Seriously?? This hurts my feelings so much. People might think it shows they are concerned, but really it's just a reminder to me how bad I actually feel. Please stop doing this to me. Just lie to me and tell me I look great. If I look bad, then don't say anything at all. I am doing the best I can and the last thing I need to worry about is being criticized for the way I look. I am in the fight of my life and I don't need to be told I look like crap.Yes, I am tired. What kind of question is that? Please be more sensitive and ask yourself if you would want someone to say that to you.<br />
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Naysayers, YOU WILL NO LONGER RUIN MY DAYS. </div>
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Ok, I am done. And I have to say that felt pretty good :) </div>
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</div>Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com2tag:blogger.com,1999:blog-1689016434667760949.post-4603821967612065852012-03-23T12:22:00.002-07:002012-07-12T13:31:08.166-07:00Post 30: I get knocked down...but I get up again!<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDCYHcJEk8cFu4C_IAfMHw_C5Wt8QYzUsBNU7_akR847gS1HK_p096bI55pORVJrl0-rgMQhmhvZonqFyVin5gLEIGQcVmQIgm9LsXr9bKK2RsKND83VN_G6t5pb5-5U7SekEvF33hdtJS/s1600/hospital.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDCYHcJEk8cFu4C_IAfMHw_C5Wt8QYzUsBNU7_akR847gS1HK_p096bI55pORVJrl0-rgMQhmhvZonqFyVin5gLEIGQcVmQIgm9LsXr9bKK2RsKND83VN_G6t5pb5-5U7SekEvF33hdtJS/s1600/hospital.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting in the ER waiting room. <br />
Unfortunately, this ER trip gave us no answers and we ended<br />
up having to drive to Shands in Gainesville shortly after this so<br />
I could be admitted into the hospital. </td></tr>
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Last week was just plain horrible. There's no other way to describe it. There is a happy ending to my story though! I missed the entire week of work because I had to be admitted into Shands Hospital for complications. Phillip and I left Elise with my mom while I was hospitalized. It was so difficult leaving her again, and I found myself crying so much in the hospital because I missed her terribly.<br />
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Just to give you a quick run down...... Last week (March 11-16th) I was in and out of two hospitals, had a CT scan, blood cultures, stool samples taken, abdomen X-Rays, more blood tests, a MRI of my abdomen & pelvis, Potassium infusions, countless bags of IV fluids, IV antibiotics, vital signs taken a billion times, met with surgeons, lots of doctors and medical students crowded around me observing the doctors.....let's just say I felt like I was on an episode of "House" with a giant team of doctors, oncologists and surgeons trying to figure out what was wrong with me. Even though the abscess showed up on my CT scan, I still <i>never</i> ran a fever, my blood work never showed an infection either. But I was extremely sick and in a lot of pain. The doctors were baffled and this time they weren't going to let me leave the hospital until we had this problem solved.<br />
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To make a long story short, my abscess made me sick. VERY sick. I started feeling ill on March the 10th. Just really under the weather and nauseous......Then the next morning (March 11th) the diarrhea (profuse - like a full ostomy bag every 30-min to an hour) started. I started blacking out and when I would stand up my heart rate would shoot up to 117 bpm. This lasted all day and then the vomiting began. I became severely dehydrated and no medications would even begin to stop it. I was taken to the ER in Valdosta (We were there for 12 hours!!! With no answers!! It was not a good experience, but that is a whole other story) I was given fluids, had a CT scan, and once the doctor saw my completely re-arranged insides on the pictures - I think they were confused and said "I should go see my surgeon". <i>Great.</i><br />
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So I was admitted into Shands in Gainesville until they could figure out why I was so sick and why I was<b> </b><i>still</i> in excruciating amounts of pain from this abscess.The doctors said they would not discharge me until the diarrhea stopped. After a LOT of IV fluids and IV antibiotics, I am happy to say I began to feel somewhat like a human being again by Friday the16th. I was hooked up to an IV to get continuous fluids for a few days. After the antibiotics kicked in the diarrhea suddenly stopped and my pain went away. This is the first time in almost a year I have not been in some kind of pain. (First time in almost 3 months I have had relief from this abscess.) I am still on oral antibiotics this week, but I was feeling so much better that I was able to go to work all week! I can not start my chemo back until my antibiotics are done. Don't want a reaction like I had the last time. (Described in my last post)<br />
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We were happy to finally have some answers as to why I was in so much pain. My oncologist explained to me that my digestive tract was in so much distress from everything (abscess, surgery, antibiotics, chemo, not having a colon doesn't help either!) it was causing severe spasms in my stomach and intestines. When I would have these spasms it would squeeze the abscess causing insane amounts of pain. The vomiting and constant diarrhea was evidently caused by the infection. Chemo can sometimes mask the signs of an infection. I am so happy to be feeling better!!! The antibiotics still make me feel yucky and upset my stomach a bit, but I will take that any day over what I was feeling before. I should be finished with my antibiotics in about a week and then I can start my 4th round of chemo over. I am happy to be home and back together as a family & feeling pretty decent! We missed our baby girl! Elise is doing great. She's trying to learn how to walk and will be 11 months old next week! I'm excited to have a good, pain free weekend with my family!Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com0tag:blogger.com,1999:blog-1689016434667760949.post-56587916853487334602012-03-09T11:17:00.011-08:002012-07-12T13:29:45.278-07:00Post 29: 4 1/2 months past surgery - and my first complication. An abscess<div class="separator" style="clear: both; text-align: center;">
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What a roller coaster we have been on lately. I have been having quite a bit of pain in my surgery area the past several weeks where my internal JPouch was created and near my tail bone. It's been over 4 months since my surgery, so I thought I was in the clear of having any complications. Unfortunately, I didn't get out that easy. I've done a lot of research trying to figure out what has been causing my pain. It's not just an "ache, cramp, or discomfort" the doctors keep calling it. I asked them if I could possibly have an <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002329/"><span style="color: #b45f06;">abscess</span></a> in the surgery site since every symptom I described suggested that. Doctors kept telling me "<i>you don't appear sick enough. You would look very sick and have a fever.</i>" I have heard all kinds of theories as to what my pain must be. I've been prescribed medicine for stomach cramps, I have been given narcotic pain killers. Nothing would help it. I went to the doctor 3 times complaining of this excruciating pain that comes and goes randomly. No one would take me seriously because I didn't "<i>appear sick</i>?!" <br />
I have been so upset because I felt like no one could help me figure out what was wrong with me. What am I supposed to do? Come into the doctor's office in my PJ's limping and crying with no makeup on for them to understand I am in pain? I do that privately in my home. Not in public. I started to get very angry because I felt like no one was listening to me. I know my body and I know something was wrong. It was also frustrating because I had a hard time describing this pain to my doctors. I think the only way to understand it is if you have experienced it yourself. As I researched on the internet, I found on a forum for people who have had JPouch surgery. One person described it as feeling like a stick was being shoved up her rear end into her stomach. Graphic, I know. But when I read that I thought, that's kind of a good way to describe it! Finally I found someone else who has felt this pain and understands! The pain comes and goes sometimes 5 minutes apart, sometimes several hours apart. It lasts for about 10 seconds then fades off.... It is INTENSE. It knocks the breath out of me, I can't speak or walk or sit during these 10 seconds. So, as you can imagine - it's a bit inconvenient and has been making it hard to function normally. This person ended up having an abscess, so I was convinced this must be what I had too. <br />
Well, the pain just became so unbearable that I couldn't take it anymore. I demanded a CT scan of my pelvis and needed answers as to why I have been in so much pain. We waited at Shands all day so they could fit us in. I didn't want to leave until I had the scan done to give us an answer. Well, the CT scan showed that I DID in fact have an abscess!!! Finally I had an answer to why I have been in so much pain. The reason why I would get waves of pain is because the small intestine is VERY active. It had also ruptured and started to drain. It's good that it is draining on it's own because if it had not, I would have to go in for another surgery to put a drain in. The drain tube would come out of my hip and I would have to carry around a drain for a couple of weeks like I had after my first surgery. I DO NOT want that!! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAa6rbBvSl4bSluacCEn303hB2UcHi6V6QhviJFifzWfLWnZZoPZ-uF1rJpR75VpEOpMLHYTCT3nfsbUmoSYV0P6X_Ij-BB1y5dleMnVDqxlQNzGj77AgE6b0x811wQn6XujMWUAro7fOy/s1600/feet.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAa6rbBvSl4bSluacCEn303hB2UcHi6V6QhviJFifzWfLWnZZoPZ-uF1rJpR75VpEOpMLHYTCT3nfsbUmoSYV0P6X_Ij-BB1y5dleMnVDqxlQNzGj77AgE6b0x811wQn6XujMWUAro7fOy/s320/feet.JPG" width="239" yda="true" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My feet covered in painful blisters. Hand and Foot <br />
syndrome at its worst from Chemotherapy (Xeloda) </td></tr>
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I was then put on 2 antibiotics. Cipro and Flagyl. So I thought I was on my way to healing. <br />
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Nope! Not that easy. I tend to not do anything the easy way unfortunately. I had a VERY BAD reaction from the chemo and antibiotics mixing. I became very sick, lethargic and could barely lift my head. I stayed home from work and just laid in bed all day. Phillip had to come home to help me eat and drink. The medicine combo caused my hand and foot syndrome to go CRAZY. The entire bottoms of my feet blistered up and I was in a lot of pain. This doesn't happen often, I guess my body and the medicine just didn't play nice together. My mom and sister came over to help us with Elise so Phillip could take care of me because I couldn't walk. Mom put lotion on my poor feet and I put bags of frozen peas on them to help with the burning and swelling from the blisters. I am so lucky to have such a wonderful family. I love them so much. <br />
Phillip called the doctors and my oncologist told me to stop EVERYTHING. He said he wanted to give my body a chance to heal on it's own. No antibiotics, no chemo. Just HEAL. So, I only made it to day 4 of my 4th round of chemo until my medicine was pulled. I am a little discouraged because I just want to get chemo over with. It's taking longer because of this complication. But my abscess will have to heal and my feet have to completely heal before I can start my chemo back. As of right now, I am trying to take it easy and focus on healing. I am starting to feel better and will update when I start my chemo back. <br />
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Oh! Forgot to write about another thing that happened during my CT scan.....We ended up having to put in a complaint about the technician who did my scan at Shands. I have never, ever had a bad experience at Shands until then. While I was laying on the table for my scan, the technician felt the need to talk about someone she knew who had colon cancer and how that person died. She said "<i>Oh, yeah I knew someone who was diagnosed with colon cancer. She just went in for vomiting and she died a year later</i>!" She went <i>on and on</i> about this woman suffering and I ended up having a panic attack on the table during the scan.. There were also problems with getting the IV to go in. My veins kept being blown, and there was an issue with getting the contrast ink to go in my IV. The technician kept pulling and tugging at my IV to get the ink to go in. My arm muscles started spasming and I felt a burning sensation. She kept asking me "<i>does it feel like it was in my veins or did it feel like it was leaking into my skin</i>." WHAT? Um, you're supposed to know that! Not ME! Meanwhile, her assistant kept referring to my osotmy as a "tube coming out of my stomach." By the time the scan was over I was shaking so bad I had to take a Xanax when I got out of the room to calm down. It was awful. I hadn't had a panic attack like that in a while. We filed a complaint and they were extremely apologetic and will be handling it. Hopefully will hear something back about that soon. Other than that, I have had terrific care at Shands and I have had several CT scans in the past with no problems. <br />
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The lesson I learned from all of this is to be persistent with your doctors and do not give up until you get an answer! You know your body better than anyone else. If you feel like something is not right, get it checked out even if the doctors think you're just over reacting. In my situation, I knew something was wrong, and I was right! Now I am on my way to getting better. I also learned that I should never sit there and let a medical professional treat me poorly. If something like this ever happens again I will not sit there and take it. If a person can't show some compassion to their patent while doing their job, I will be better about telling them that it's not okay to treat me this way, walk out (if I am able!) and find someone who will.Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com0tag:blogger.com,1999:blog-1689016434667760949.post-13536566537547164722012-03-02T06:30:00.010-08:002012-04-13T07:45:12.973-07:00Post 28: March is Colon Cancer Awareness Month<a href="http://www.dressinblueday.com/" target="_blank"><br />
<img alt="Dress in Blue Day For a Future Free of Colon Cancer! Friday, March 2, 2012" border="0" height="90" src="http://www.ccalliance.org/images/DIBD_2012/DressInBlue_2012_728x90.jpg" width="728" /></a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLiROFPEz4anqYU_vv93cLA5E7nE9U1ukQBO22sM2gprrDTn20rtlfviqqJZAoNBnblw99rsrgkZO9kSTATfQDKTy0gUWKUWTr-8ZWdFBTTaqTJt7nVCNgGV2avHBTAdUnTkGg_A1ITcS3/s1600/Log-On-Live-On-News-Post-Image.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLiROFPEz4anqYU_vv93cLA5E7nE9U1ukQBO22sM2gprrDTn20rtlfviqqJZAoNBnblw99rsrgkZO9kSTATfQDKTy0gUWKUWTr-8ZWdFBTTaqTJt7nVCNgGV2avHBTAdUnTkGg_A1ITcS3/s320/Log-On-Live-On-News-Post-Image.jpg" uda="true" width="228" /></a> Getting a colonoscopy is something a lot of people put off due to being embarrassed & uncomfortable with the idea, or because they are scared of the procedure or preparation. Some even avoid colonoscopies because they are afraid of what might be found. But colon cancer is one cancer that is preventable with early and regular screening. Screening can catch polyps before they become cancerous, and when caught early, colon cancer can be cured.</div>
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It is recommended that everyone over 50 begin their screenings regularly. The procedure is quick, not painful and most insurance covers it. However, if colon cancer runs in your family OR you have any of the following symptoms it is important to get screened no matter what your age. My screenings began when I was 19 years old because I developed ulcerative colitis which increased my risk of developing colon cancer. </div>
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The most common symptom of colon cancer is having no symptom at all, which is why regular screening is critical. <strong>If you experience any of the following symptoms</strong>, speak to your doctor about scheduling a screening, especially if you have a personal or family history of cancer or colon polyps:<br />
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<li>A change in bowel habits such as diarrhea, constipation, or narrowing of the stool that lasts for more than a few days</li>
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<li>Rectal bleeding or blood in the stool</li>
<li>Cramping or stomach pain </li>
<li>Feeling bloated or full in the stomach </li>
<li>Gas pains</li>
<li>Weakness and fatigue </li>
<li>Decreased appetite</li>
<li>Vomiting</li>
<li>Losing weight when you are not trying to</li>
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The symptoms of colon cancer may resemble other conditions like infections, hemorrhoids and inflammatory bowel disease, so talk to your doctor if you are experiencing any of these symptoms.<br />
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People who are at risk are stereotypically obese and sedentary individuals, or people who smoke & eat a diet high in fat. <strong><u>However, this is NOT always the case!!!</u></strong> I eat healthy and have always maintained a healthy weight. Before my surgery, I was very active. I ran and worked out regularly. I have never smoked a cigarette in my life. I don't know anyone in my family who had ulcerative colitis, I think a distant relative might have had colon cancer. Other than my UC which was well controlled by medication I was very healthy. So as you can see, colon cancer does not discriminate. That is why it is so important to listen to your body and get checked out if something is not right. <br />
Since I had ulcerative colitis, my screenings were performed every couple of years. None of my screenings showed any signs of colon cancer until I was 32. During my pregnancy, the estrogen caused my tumor to show up. Regular screenings and being pregnant actually SAVED MY LIFE. If I had not been screened when I noticed unusual symptoms, and waited even for another 6, months my cancer would have spread. <strong>(To read about how I knew something wasn't right, read </strong><a href="http://theklappfamily.blogspot.com/2011/09/pregnancy-with-uc-and-how-we-discovered.html"><span style="color: orange;"><strong>HERE</strong></span></a><strong> about how we found my tumor.)</strong><br />
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<strong>Don't ever ignore any symptoms that don't seem normal for you.</strong> Just go and get checked. If everything comes out fine, that is great!! If not, be grateful the problem was found and you can get on a treatment plan that will help you get well or possibly save your life. Don't put it off anymore!!!<br />
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For more information on Colon Cancer, and to find out if you are at risk and what to do to get screened: Click <a href="http://www.crcawareness.com/index.asp"><span style="color: orange;">HERE. </span></a><br />
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If you ever have any questions about getting a colonoscopy and are embarrassed to ask, please don't ever hesitate to send me an email at: <a href="mailto:klappfamily@gmail.com">klappfamily@gmail.com</a>. I would be more than happy to talk with you about any questions you might have.<br />
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</div>Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com0tag:blogger.com,1999:blog-1689016434667760949.post-18169954543306794912012-02-23T20:00:00.003-08:002012-04-13T07:45:46.032-07:00Post 27: Ups and Downs. Healing the mind as well as the body<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDyp_DVLY3bNT3xFXYg-xYnt9NeVgly9Iwuns0X4X1TxjUWOr8rfEAXaBkK3K7rcndLkQKtINKNKCEorwfspvDAUtiLOrnld3VuQXTk27hYbSAW2PnJ762lHAJkn6MyM16wkhEzMyZ2Hn-/s1600/alright.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" lda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDyp_DVLY3bNT3xFXYg-xYnt9NeVgly9Iwuns0X4X1TxjUWOr8rfEAXaBkK3K7rcndLkQKtINKNKCEorwfspvDAUtiLOrnld3VuQXTk27hYbSAW2PnJ762lHAJkn6MyM16wkhEzMyZ2Hn-/s1600/alright.jpg" /></a></div>
Why is it that we feel we have to put on the fake smile and pretend everything is just perfect? You know you do it. I am <em>so</em> guilty of it. People casually say, <em>"Hi, how are you?"</em> or ask if you need help. The response is usually, <em>"Oh, I'm fine! I don't need anything, but thanks anyway!"</em> We are not going to get an award or a cookie for being perfect and pulled together at all times. I'm not saying walk around and be a rude grump to everyone. But we are human and we are far from perfect. I have been trying my best this past week to ask for help. I am stubborn and hard headed. I've also learned I am a control freak. I don't like to let go and let people do things for me. I am working on this and trying to let people in. And thank you to those who have just insisted and won't take no for an answer. I have some good friends I am so grateful for. <br />
The other day someone said to me, <em>"Oh, you're just so strong and you are handling all of this so well!" </em>In all honesty, I'm really not! Not even close! Each day feels like a mountain to climb. Once the day is over, I collapse on the couch and I am done. Then it starts all over the next day. When I hear that word <em>strong</em> I feel like this is a silly description for me. If only you could see me break down into the ugly cry at home. I have been one of those guilty ones of putting on the fake smile and just pushing through, only to loose it the moment I walk in my house. My husband really is the only one I usually let see me like this. He is constantly my hero and peeling me up off the floor. <br />
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Yes, I have had wonderful days. Days I am so grateful for. Days I feel good, and I am happy. Don't get me wrong, I consider myself extremely lucky. I have a beautiful, healthy baby girl and an amazing husband. A beautiful safe home. A great job. So I don't deserve to have a pity party right? That's what I tell myself and that's why I beat myself up constantly. I don't <em>deserve</em> to feel sorry for myself. So many have it much worse. This is where I have learned a valuable lesson from a dear friend and co-worker who has fought cancer herself. She has taught me that I need to allow myself to mourn, be human, take a day off to cry if I need it. This is what will help heal me. If I am not good to myself, I will be no good to others. <br />
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As I have been recovering from surgery and doing my chemo treatments, I still have days at home where that smile is nowhere to be found. My home is my safe place where I can wrap myself up in a blanket and close out the world if I need to. Some days I get lost in a mental funk and I feel like I am spiraling into sadness I can't shake. There are days I have trouble sleeping and have no appetite… some mornings it takes me an hour to eat a piece of toast. There are days I don't feel like talking to anybody and would lie in bed in the morning, dreading the thought of getting up and starting the day. There are days I am listless and have zero interest in doing anything. Some days I am in pain and don't even want to look at myself in the mirror. No amount of concealer can cover those dark circles, and the baggy shirts don't take away the fact that I have a bag of crap attached to my stomach and I feel disgusting. There are days at home I curl up in a ball and sob until I couldn’t cry anymore, only to repeat the emotional breakdown a few hours later.<br />
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<strong>There will be days like that......</strong> <strong>And they will pass. </strong><br />
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A big challenge I am having right now is not wanting to get out there and be social. I'm finding that I have become a little withdrawn lately, and feel like a lot of people just don't know what to say to me anymore. I fear running into someone I know who thinks I wear a giant sign that says. "<em>COME TALK TO ME ABOUT CANCER!"</em> I understand, maybe people feel awkward and they want to show their concern and ask lots of questions about, but I just want to get out and be normal like everyone else. I just can't handle another conversation about how someone they know suffered through cancer only to die in the end. Why people feel the need to tell me these stories? I will never know. I remember when I was pregnant, people loved talking about how they almost died during child birth. Why do people do this!!?? It's just mean. I find myself afraid to go to the store because I just don't have the energy to put on my fake smile and listen to people's unthoughtful comments. To avoid these conversations, sometimes I just want to be alone and stay home, but at the same time I feel so extremely lonely. It's a very frustrating feeling. I want people to remember that I am a real person with a real life going on despite all of this cancer stuff. I'm a mother, wife, sister, daughter, teacher, photographer. I love to cook and sip on wine, I love the outdoors and I love my friends and family. I love to laugh, I love to dance. I love music. <br />
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I long for the days before my diagnosis. I miss the old me so much my heart breaks when I look at old pictures. I want my life back. I want ME back. The playful silly me. The creative quirky me. Just the gal with the curly red hair. I want to be normal again. At times I feel like I am trapped in a bubble. I can see everything I want to do, but when I try it feels so out of reach. Chemo has made me so exhausted that I just don't have the energy to do the things I love right now. I miss that girl inside of me that I used to be. She will come back out someday. I know she is still there. I just have to find her again. <br />
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The most valuable lesson I have learned from some good friends, and I can't believe it has taken me 33 years (and 4 months after surgery) to get this through my hard head: <strong><u>We need to stop comparing ourselves to others.</u> </strong><br />
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Some people say, <em>"Oh, I know <strong>so-and-so</strong> who was on chemotherapy, and she came to work everyday during her chemotherapy and never missed a day. She acted like it didn't phase her! So I'm sure you'll be fine!" </em>When people say things like this to me it makes me cringe. I know they might be trying to encourage me, and I still smile and say,<em>"That's great! Good for her!" </em>But it used to make me feel so defeated. <em>What's wrong with me? I go home and cry and can't get out of bed. But <strong>so-and so</strong> is such a trooper. Why can't I be more strong like that?? </em><br />
I have realized now that I never need to compare myself to others. Ever again. It eats at my spirit and brings me down. Now what I'm really thinking is either that person is (A) a robot, or (B) they are having emotional breakdowns at home behind closed doors that no one sees JUST. LIKE. ME. <br />
I am pretty sure the answer is B.<br />
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No matter who you are, <em>everyone</em> is going through some kind of struggle in their life. Whether it's cancer, divorce, loss of a loved one, healing after an illness, depression or anxiety issues, relationship problems, stress at work, being apart from your family. Everyone is going through something tough. <u>Everyone</u> has a story. Everyone is smiling to cover a wound. <br />
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<u>NEVER, EVER, EVER</u> compare yourself to others and think, <em>"they are so strong and they seem like their life is so perfect. What's wrong with me? Why can't I be stronger and be happy all the time like that? Why am I so weak?" </em>STOP DOING THIS TO YOURSELF. Everyone is going through their own battle. I am trying to remind myself of this daily. You are you. I am me. That is all we can be.<br />
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Oh, and good news. I am officially 1/2 way through my treatments! I completed my 14 day chemo cycle and did not get <a href="http://theklappfamily.blogspot.com/2012/01/well-i-am-lounging-at-home-today.html">Hand & Food Syndrome</a> this time!!! Yay! Three more rounds to go.Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com3tag:blogger.com,1999:blog-1689016434667760949.post-73782412419072374452012-02-17T08:23:00.003-08:002012-04-13T08:07:00.759-07:00Post 26: CT scans, half way through round 3 of Chemo, & products I can't live without!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2NJYXd_7lYUE89EBnzmFbT64-E0EyiVY6CVwl2eU4xoWp8iPnISg5oFaWErnE17Txb0AdcEqqKnQR0aKXR06D33JwFeetGuPwvsX1Hg8Njg9y92aymiFPr390fg9gqZyXS5B8JjLJlUB3/s1600/funny-pictures-cat-scans-dog.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="252" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2NJYXd_7lYUE89EBnzmFbT64-E0EyiVY6CVwl2eU4xoWp8iPnISg5oFaWErnE17Txb0AdcEqqKnQR0aKXR06D33JwFeetGuPwvsX1Hg8Njg9y92aymiFPr390fg9gqZyXS5B8JjLJlUB3/s320/funny-pictures-cat-scans-dog.jpg" width="320" yda="true" /></a></div>
I am happy to say that in a week I will be 1/2 way through my chemotherapy treatments! I will have 3 more rounds after I finish this one. If I get sick or have hand & foot syndrome my doctors withhold my medication so my immune system can have a chance to work. Hopefully I won't have any delays so it won't take longer to finish a round. I am trying very hard to stay as healthy as I can. Sometimes it's tough staying well when you're a teacher. SO MANY germs at school! But I am just extra careful. I am also trying to learn that I don't need to be so hard on myself when I need a break. I have a hard time asking for help and sometimes I feel like I should just push through. But I am realizing this is not doing me or my family any good. Some of the side effects can get really ugly if you let them go too far. I am lucky I have such a good oncologist that takes these things very seriously and gives me time to heal if I need it. <br />
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So far with this round I have not developed any hand or foot issues. Yay! But a strange thing that has happened is my fingerprints are disappearing! I was checking my little girl out of daycare, and they have a fingerprint scanner you have to touch when you come in to pick up your child. When I tried to scan my finger it kept telling me it didn't recognize me in the system! I tried 10 times with no success so they had to check Elise out for me. I read that this could be a side effect. It's a weird one! So I guess this means I can be sneaky and not leave my fingerprints!? :) Just kidding.<br />
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To help with my hand & foot syndrome I started using a moisturizer called <u>Udderly Smooth</u>. I was using a different one called Bag Balm, but I felt like it wasn't really helping as much as this one. Some swear by the Bag Balm, but I guess it's just what works for some might not work for others. Udderly Smooth has been awesome for me the past few weeks. I think I will continue using it even after I am done with chemo. It really soaks in your skin and doesn't feel greasy. I don't really love how it smells, but if it helps who cares! <br />
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<tr><td class="tr-caption" style="text-align: center;">ReliaMed Lubricating<br />
Deodorant. A sanity saver. </td></tr>
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This is really embarrasing to write about, but I want to post it anyways because I wish I had known about this stuff earlier.(ReliaMed Lubricating Deodorant) I feel like this product is worth a little embarrasment and it is important to post. I just hope I can help even ONE person who might be in this situation. Things like this are really hard to write about because I don't want anyone thinking I am gross or unsanitary. I hate when people look at my stomach trying to see if they can see my pouch through my clothes. I feel like people might think I am dirty. I know I shouldn't worry about what people think, but that is easier said than done. Having an ostomy bag can be very humbling sometimes. Your small intestine is <em>constantly</em> moving. It has a mind of it's own and you have to empty the ostomy pouch when it gets full. Since you have <em>zero control</em> of when the bag fills up, you end up having to empty it in public places unfortunately. It's not fun, but It's just a part of life for me right now. The problem is when you are in a public restroom.....lets just say the odor that can come out of the pouch is, well..... <em>special</em>. It can be absolutely <em>humiliating </em>and make you not want to leave the house in fear that you will have to empty it in a public restroom. There is not much more embarrasing than coming out of the bathroom stall with someone waiting in line to come in after you. Thankfully there is a product you can put in the pouch that gets rid of all the odor. I use it <u>every single morning</u>. It kills bacteria and almost completely prevents any odor all day. I was about to run out of it and I was litterally in tears because I didn't want to go anywhere without having this stuff in my pouch. We had to overnight a couple of bottles. I know this sounds like something so trivial, but when you have a situation that changes the way you live and function, the last thing you need is further embarrassment or even more damage to your self esteem. I am thankful that there are people who are thoughtful and develop products like this to help make life just a little bit easier while living with an ostomy. The weird thing is it is a <u>blue gel</u>. When I first used it I wondered why is it <em>blue</em>!!?? I quickly discovered blue color provides a visual indication of surface coverage. When I put a little bit of the gel in the pouch, I squish it around and I can see that I have the whole inside of the bag covered. Makes sense! I really can't live without this stuff.<br />
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<tr><td class="tr-caption" style="text-align: center;">This is what my brain felt like yesterday! </td></tr>
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I won't lie and say things are easier. But living with an illeostomy has become a "new normal" that I am slowly getting more used to. I still have days when I look at myself and wonder how did I get here? What has happened to me? It's been extremely challenging especially with a 9 month old baby and working full time. But keeping busy keeps my head in a better place and I don't have time to sit and overthink things (which I tend to do.)</div>
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My husband is a saint. He has been absolutely amazing. He litterally does everything at home when I have days I just can't keep going. I can't even begin to express how grateful I am to have this wonderful man in my life. I really don't know how I would make it through this without him. I have some good days and those are the days when I will dress cute and fix my hair. We get out of the house and do as much fun stuff together as a family as we can. I feel like I have to take advantage of these days, because I know they won't last long. Some days are extremely difficult and yesterday was definitely one of the more challenging ones. I have been having MAJOR insomnia for the past few weeks. Maybe getting 1-2 hours of sleep at night. I just lay there trying to keep my eyes shut hoping I will drift off to sleep eventually. I guess the lack of sleep caught up with me because I was having some memory loss and confusion. I had a very hard finding things at home, I was having a rough time explaining directions to the students at school. I just couldn't get the words out. I just felt lost in general. It really scared me because I am a <em>very </em>organized person. Once the kids left my classroom and I was alone, I just broke down. I don't ever cry at school. I was so upset with myself. I didn't want to be unprofessional and I didn't want the kids to see me. The last thing I wanted was for the kids to know I was upset. The teachers were so sweet and took over my classes for the day so I could go home and rest. I went home and Phillip called my doctor to ask about the memory loss I was having. They told me to go to my primary care doctor here in town and have them evaluate me <em>immediately.</em> They did some blood tests and a CT scan of my head just to rule out any problems that could be causing my confusion and memory loss. Luckily all of my bloodwork and my CT scan looked good. I am so releived. I just don't know if I could handle any more bad news. Luckily, the doctor chalked all of my symptoms up to insomnia. I started on Ambien last night and I ended up getting a good 4-5 hours of sleep. I am doing a little better today. Hopefully I can get some more rest and be on my way to feeling better. I am hoping to enjoy a good weekend with my family! </div>
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</div>Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com1tag:blogger.com,1999:blog-1689016434667760949.post-1076409417547929162012-02-09T17:00:00.003-08:002012-04-13T08:08:57.884-07:00Post 25: Goodbye to the stomach virus!<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHki7LyWhkd5MMO2fBdnidiVZ6c7aC5vNbx2R4I3tulAkHMQ0KILd2M-lqIc1_PTYGSD38BvSzN32GPxWPI_dakxItbbtLts4oJsSy2HrLfQRbGGEFBSnSC5pBWPdkw_QwQs3GVdaWDinD/s1600/mommy.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" sda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHki7LyWhkd5MMO2fBdnidiVZ6c7aC5vNbx2R4I3tulAkHMQ0KILd2M-lqIc1_PTYGSD38BvSzN32GPxWPI_dakxItbbtLts4oJsSy2HrLfQRbGGEFBSnSC5pBWPdkw_QwQs3GVdaWDinD/s320/mommy.JPG" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mommy & Elise (9 months) <br />
Feeling well during my 'off week</td></tr>
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We've had some major ups and downs the past two weeks! First I just want to say I feel pretty awesome today!!! I've been on my 'off week" with no chemo meds for a few days. I can REALLY tell when I am not taking it. I feel more like myself. I've been super busy enjoying my family this week. We've had some great moments, but unfortunately some really rough ones last week. I'll go ahead and fill you in on the bad stuff first, then I will get to the better news.<br />
<br />
Last Saturday (Jan 28th) Elise caught a tummy virus. She was throwing up and having diarrhea. I knew I probably shouldn't have been cleaning it all up or snuggling her. But she is my baby! How can I not hold my sick baby?? Her virus only lasted a day, if not just 12 hours. She was happy and playing by the end of the day, so we thought we were in the clear. We clorox wiped every light switch and door knob we could find hoping we would not catch it. Well, Sunday I woke up feeling a little gross. But chemo makes me feel bad already, so I really didn't know if it was that or if I caught her virus. As the day progressed I began feeling worse and worse. By late afternoon I was losing an entire ostomy bag of pure water every hour. I took Imodium 8 times and it wasn't slowing it down at all. As soon as I would drink something, it would go straight out to my ostomy bag. I was getting scared and becoming faint feeling. Phillip and I decided it was time to take me to the ER. I was getting worse by the minute barely able to even get dressed because I was going in and out of consciousness. Then the vomiting started. It was BAD. I don't remember much after this, but somehow Phillip got me into the car and to the hospital. I remember being pushed in by a wheelchair to the front desk. I Heard Phillip talking to the front desk about how I was immune-suppressed because of chemo, so they put me in a room by myself with a mask on my face to protect me from the general waiting room. I was admitted and received 3 liters of fluids but still felt sick. They gave me some phenergan to stop vomiting & Zofran for nausea. We were lucky enough to have my mom stay at our house to take care of Elise while I was in the hospital. I missed her Elise so much and just wanted to go home. I am so tired of hospitals. I was so cold from the IV fluids, and my back was killing me from the stretcher/bed. I missed our baby. I heard a baby screaming in the ER and it sent me into a panic attack. I have not had one of those in months! It was bad, so they gave me some Ativan for anxiety through my IV. I eventually just passed out and slept from exhaustion. I guess the ER doctor thought I would be ok and they discharged me. Unfortunately, Phillip and I BOTH started vomiting once we got home. My sweet mom slept over at our house and got up with Elise so we could both sleep. It was a miserable night. I don't really remember much of it because I was so doped up from the medicine they gave me. Poor Phillip was better within 24 hours. However, it took me about 5 days to get over the dehydration. I missed 3 days of work. I had an appointment at Shands in Gainesville that following Wednesday. They thought it would be best if I got more fluids and a potassium infusion. Our appointment was at 9:30am and we finally left Shands after 4:pm. It was a long day. Then my poor mom caught it from us and she was sick for a couple of days. This virus was a rough one!! Glad it's finally gone from our family!! I really REALLY need to be more careful from now on because the chemo can cause me to be immune-suppressed. What might take a person 2-3 days to get over, has the potential to put me in the hospital. Learned that the hard way. <br />
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The good news is that at my appointment in Gainesville, they decided to give me a week off my chemo so I could fully recover and feel better. The dehydration from the stomach virus really took a toll on me. It took a few days to start feeling better and to stop losing so much fluid. They put me on a STRONG prescription anti-diarrhea medicine called Limotil. I drank A LOT of Pedialyte, and stuck to the BRAT diet for a few days (Bananas, Rice, Applesauce, Toast). After all of that slowed down I got my strength back. Since I have been off my chemo drugs for 10 days I feel pretty great now. I feel like me. Like mommy! It makes me happy to know I will feel like myself again someday, and I got a good preview of how good I can feel this week.<br />
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This week I have been able to teach all day and enjoy painting with the kids at school. I still have energy when I get home to play with Elise and cook dinner with Phillip. We've also been able to go for short walks. I'm really excited that I have been able to take a hot shower/bath. During my treatments I have to keep the water cool so it won't burn my hands and feet. It's been wonderful to take a warm bath! I'm just trying to enjoy every last minute.<br />
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The doctor also lowered my dose of Xeloda (chemotherapy drug) again. They said they start you off with the highest dose they can according to your weight. Then they adjust from there. I will start my chemo meds back tomorrow (Friday the 10th) and hopefully I will continue feeling decent. I know I won't feel 100%, but maybe some of the painful symptoms will be lessened.<br />
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My doses have been altered twice since I have had such bad hand and foot syndrome, and my weight has been dropping faster than they would like to see:<br />
<ul>
<li><u>December: 1st round 1500mg - TOO HIGH</u> for me. I ended up with severe hand and foot syndrome on the 9th day (out of a 14 day cycle).</li>
<li><u>January: Second round was altered to 1250 Still TOO HIGH</u> - but I made it to day 12 (out of the 14 day cycle) before they pulled my meds.</li>
<li><u>February: Third round will be lowered to 1000mg</u>. Hopefully I will be able to complete my full 14 day cycle of Xeloda and this will be the right dose for me.<span style="color: #990000;"> <span style="background-color: white;">(<u>Update 2/23/12</u> : This is the correct dose for me and I was able to complete all 14 days with no Hand & Foot Syndrome! My hand and feet were still very tender and I had to be careful, but they were nothing like they have been in the past. I still had other side effects I've discussed in previous posts, but at least we got this one under control.) </span></span></li>
</ul>
Fortunately Phillip and Elise were all better by the weekend of the 4th so they could go to their first Father Daughter Dance!! It made my heart so happy to see her all dressed up and ready to go dancing with her daddy. It was such a sweet moment and I will post pictures below.<br />
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This week has been a great week and I am happy I've had a few days where I can say I've felt pretty good. We are keeping our fingers crossed that this 3rd round of chemo that I start tomorrow will go well. Hopefully we have figured out my dose and I can tolerate it a little better this time.<br />
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Thanks again for all of your thoughts and prayers.<br />
Here are some pictures of Elise and Phillip on their way to the Father Daughter Dance! <br />
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<br /></div>Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com0tag:blogger.com,1999:blog-1689016434667760949.post-25358519813962960542012-01-25T10:26:00.002-08:002012-04-13T08:09:27.074-07:00Post 24: Stuck at home today...Chemotherapy update & week 12 post surgeryWell, I am lounging at home today & playing on Pinterest. <br />
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<tr><td class="tr-caption" style="text-align: center;">My hands with Hand & Foot Syndrome</td></tr>
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Not <i>exactly</i> by choice, but because unfortunately I can't walk today. The dreaded hand-foot syndrome is back. I have a bag of frozen peas stuffed in each of my socks on my feet while they are elevated to help give me some relief. Lovely isn't it? :) This is an actually recommendation from doctors! And yes, it feels pretty nice.<br />
<br />
Hand & Foot developed quickly over the last 2 days. It was fairly mild Monday, but I guess two days of being on my feet at school aggravated it. To describe it, I would say that it feels like my hands and feet have been scorched, like I touched them to the top of the stove. <a href="http://www.chemocare.com/managing/handfoot_syndrome.asp" target="_blank">This link</a> will explain what causes it. They are very red, swollen, splotchy with red and purple spots. They just plain hurt! Above is a picture of what my hands look like. My feet are significantly worse and are red on the entire sole. Not everyone taking chemotherapy drugs will develop H&F syndrome. About 30% will. I guess I am just one of the lucky ones. I much rather have this instead of vomiting and hair loss, so I can't complain too much!<br />
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I have been able to go to work for the most part during my treatments so far. Some days I lay down for a little while in the nurses office at school for a little pick me up. It helps. But today is just one of the hard days. I know it will get better soon. Since my chemotherapy is in pill form, I take it for 14 days, then have a 7 day rest period where I don't take any pills. This "rest period" gives my body a chance to recover from the side effects before I move on to my next round. Since my hands and feet got so bad on day 12, the doctor pulled my day 13 & 14 dose so I can go ahead and start my off week. He says this will not effect how my therapy works, so that is good news. <br />
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By doctor's orders, I know I need to rest & I am taking it easy today. But I do really want to get back to school. We have so much fun stuff to do! We are preparing for our annual school Art Fair held in March, we also have to get artwork ready to display in the Turner Center for Youth Art Month in February, and we are creating art work that can be projected behind the Valdosta Symphony Orchestra during a concert in conjunction with Youth Art Month. Pretty awesome, huh!!? So I really want to get back to my classroom and paint with them, but it's just not happening today. <br />
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So far I feel like I have done <i>fairly</i> well on chemotherapy. It's no walk in the park, but I know I can do this. Some days are really good, some days are unbelievably rough, most are somewhere in between. It's been very frustrating the past couple of days. I've been really upset because I feel like I am back where I started not being able to do things with Elise (but the pain has shifted to another body part). I can't walk around and chase her, or pick her up well. I have to stay away from warm water and I miss bathing her. I can't fasten her little buttons and snaps when I dress her. I miss cooking & gardening - basically anything that I do with my hands. Not being able to use my hands and feet can also be a bit of a challenge when you are an art teacher and a photographer. My photography business has come to a halt at the moment. The little buttons and dials on my camera hurt my hands & I am too weak to do sessions during treatments. I do have a wedding in April I am photographing that I am planning my treatments around it so I will be in good shape for it. I feel pretty good and back to normal on those days. It gives me something to look forward to! <br />
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Lots of people have asked me what my side effects are like and how I am feeling. Hand & Foot syndrome, severe fatigue & diarrhea have been my <i>major</i> side effects.<br />
Below are a list of possible<b><u> side effects</u></b> if you happen to be interested. I don't have all of them thankfully! :) Hopefully in a few days I will be feeling better and like myself again. Meanwhile, if you scroll to the bottom: here's a new picture of Elise at 9 months! It's crazy that I was diagnosed when she was 4 months old. Time has flown and she has brought us so much happiness through all of this. <br />
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<b>Back, joint, or muscle pain</b> - No<br />
<b>Constipation</b> - No<br />
<b>Dizziness</b> - occasionally<br />
<b>Eye irritation</b> - occasionally<br />
<b>Headache</b> - rare<br />
<b>Itchy or dry<span style="color: black;"> </span></b><span class="itxtrst itxtrstspan itxthookspan" id="itxthook0w0" style="color: darkgreen;"><span style="color: black;"><b>skin</b> - Yes</span></span><br />
<b>Loss of appetite</b> - Yes<br />
<b>Mild nausea</b> - Occasionally<br />
<b>Vomiting</b> - No<br />
<b>*Diarrhea</b> - Yes -I eat absolutely no sugar or foods high in fat. I also control this with Imodium. <br />
<b>Stomach pain</b> - occasionally<br />
<b>Taste changes</b> - NO<br />
<b>*Tiredness</b> - Yes<br />
*<b>Trouble sleeping</b> - Yes<br />
<b>Upset stomach</b> - Occasionally<br />
<b>*Weakness</b> - Yes<br />
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<br />
<b><u>SEVERE side effects</u></b> that may occur when using Xeloda: (I have a couple of these, and when it happens the doctors withhold my medicine for a few days to get it under control)<br />
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<b>Severe allergic reactions (rash; hives; itching; difficulty breathing)</b> NO<br />
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<b>Tightness in the chest</b> NO</div>
<div style="text-align: justify;">
<b>Swelling of the mouth, face, lips, or tongue</b> NO</div>
<div style="text-align: justify;">
<b>Black, tarry stools</b> NO</div>
<div style="text-align: justify;">
<b>Bloody diarrhea </b>NO</div>
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<b>Chest, jaw, or left arm pain</b> NO</div>
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<b>Decreased amount of urine</b> NO </div>
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<b>Discolored skin</b> NO</div>
<div style="text-align: justify;">
<b>Dry mouth or eyes</b> YES</div>
<div style="text-align: justify;">
<b>Fainting or blacking out YES</b> (blacking out occasionally. No fainting.)</div>
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<b>Fast or irregular heartbeat</b> - occasionally</div>
<div style="text-align: justify;">
<b>Fever higher than 100.5 degrees F</b> - NO </div>
<div style="text-align: justify;">
<b>Chills</b> - YES</div>
<div style="text-align: justify;">
<b>Sore throat</b> - NO</div>
<div style="text-align: justify;">
<b>Hair loss</b> - NO thankfully, but it has changed texture and is very dry. </div>
<div style="text-align: justify;">
<b>Increased thirst</b> - NO</div>
<div style="text-align: justify;">
<b>Leg pain or swelling</b> - Occasionally </div>
<div style="text-align: justify;">
<b>Moderate to severe nausea</b> - NO</div>
<div style="text-align: justify;">
<b></b>NO </div>
<div style="text-align: justify;">
<b>Diarrhea</b> - YES</div>
<div style="text-align: justify;">
<b>Mood or mental changes (eg, depression)</b> - Occasionally</div>
<b>Nail problems</b> - YES Stopped growing, dry and brittle. <br />
<b>Numbness of an arm or leg</b> - Occasionally<br />
<b><u>*Numbness, pain, tingling, blistering, swelling, or redness in the palms of the hands or soles of the feet (Hand & Foot Syndrome)</u></b> YES<br />
<b>Pain, redness, swelling, or sores in the mouth or throat</b> - Yes, sore gums (have to use very soft toothbrush) <br />
<b>Persistent cough or wheezing</b> - NO<br />
<b>Shortness of breath</b> - Occasionally<br />
<b>Sudden, severe headache or vomiting</b> - NO<br />
<b>Swelling in the legs, ankles, or feet</b> - YES<br />
<b>Unusual bleeding or bruising</b> - NO<br />
<b>Unusual tiredness or weakness</b> - YES<br />
<b>Vision changes</b> - NO<br />
<b>Yellowing of the eyes or skin</b> - NO<br />
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<tr><td class="tr-caption" style="text-align: center;">Elise at 9 months</td></tr>
</tbody></table>Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com1tag:blogger.com,1999:blog-1689016434667760949.post-26048328119001411112012-01-02T12:35:00.000-08:002012-04-13T08:09:54.772-07:00Post 23: Starting chemo, week 10 post surgeryI sat there staring at these 3 peach colored pills in my hand for over 15 minutes. I felt like I was about to jump off a cliff. I had my glass of water in my other hand and when I got the courage to take them, it was like my arm wouldn't work to bring the pills to my mouth. I just I looked at them for a while in awe of how powerful and destructive these pills could be. <br />
<br />
I was an emotional mess. <br />
<br />
I think that day was one of the hardest days since I got the news. Then I thought about WHY I was taking it. I felt lucky and blessed that I have this to help me. I decided to not look at them as poison, but as something that will help me fight this and take control. After torturing myself for 15 minutes with my thoughts, I prayed hard and popped those pills in. Prayed some more for strength to know it would all be ok. That was the day I started the dreaded chemotherapy. My first dose was on December 21st while I was off for Christmas break. I wanted to get this thing going and see how my body would react before school started back. Since I am taking Xeloda, I take 3 pills in the morning & three in the evening. I do this for a period of 14 days, then have a 7 day rest period. I'll repeat this cycle for 6 months. I prepared myself for the worst of course, the worrier that I am. I am happy to say it hasn't been as awful as I envisioned. The first couple of hours after I take my pills, I feel just plain lousy. But as the day goes on I start to feel better. Mostly I am just really tired. <br />
<br />
All was well up until about day 10. I unfortunately developed the <a href="http://www.breastcancer.org/treatment/side_effects/hand_foot_synd.jsp">Hand-Foot syndrome</a> the doctor warned me about. Prevention is key for this side effect. No hot water, no excessive walking. No opening jars or using tools that could put pressure on my hands. No going barefoot. No exercise. I pretty much have to be very delicate with my skin while taking this medication. I thought I would be fine, but when I looked in the mirror and my face looked sunburned, I was a bit concerned. My feet also became so swollen, red and purple that I could hardly walk. I was told to call the doctor immediately if I had these symptoms. The doctor withheld some of my doses to get it to calm down. Apparently if it gets too far it can be pretty ugly and I wouldn't be able to walk at all. My doctor is going to adjust my dose so we can get this under control. I really beat myself up about it for a bit. I felt like a wimp. This is silly, I know. I just wanted to take the meds like a champ and get it over with. But now I know I need to listen to my body and take care of myself. It's hard when I want so badly to get out there and just be me again. I get to wear these really sexy gloves and socks to bed. I was told to get this cow udder cream called "bag balm" and smear it all over my feet and hands. Then put my socks and gloves on. It's really lovely. Especially since the side of the container actually has instructions on how to apply it to the cow's udders. Oh, don't I feel pampered! My poor husband. I'm pretty attractive with my ostomy bag, gloves and tube socks. He's the best and tells me I'm beautiful anyway. I'm finally at the point where I can laugh about it now. I am looking forward to the day when we can sit around and laugh about "remember when?....."Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com1tag:blogger.com,1999:blog-1689016434667760949.post-27084457415586551612011-12-20T13:49:00.000-08:002012-04-13T08:10:52.045-07:00Post 22: Chemotherapy: 8 weeks Post SurgeryIt's been 8 weeks since my JPouch surgery and I'm happy to say I am feeling pretty good! I feel more like myself than I have in the past 2 months. My strength is coming back and I am becoming a lot more comfortable with having an ostomy. I am able to pick up Elise and go for walks with her. It's been wonderful being able to spend time with my family while I am feeling well. I had an appointment with my oncologist yesterday. Last week we got the results from my <a href="http://www.genomichealth.com/">OncotypeDX</a> test. He gave us a call and spoke with us both on speaker phone. He explained that the cancer cells were unfortunately a lot more aggressive than they hoped and the test revealed a slightly higher re-occurrance rate. Before we knew this, we decided to forego chemo hoping they got it all with surgery. But now hearing that the cancer was more aggressive, I don't want to mess around. We don't want to risk the chance that there may have been the possiblity that the cancer cells escaped the colon wall. Maybe it didn't, but it's not something we can see at this point. Cancer cells are tiny and don't show up until there are lots of them and it has grown significantly. This isn't a risk I want to take. We thought aobut it, listed all of the pros and cons. I came to the conclusion that if, God forbid the cancer DID come back, I want to know that I did <i>everything</i> I possibly could. If it did ever come back and I had not done chemo, I would forever blame myself. I want to do everything I can to live a long happy life with Phillip and Elise. I have a reason to be here. I am Elise's mommy and I want to grow old with Phillip and see my daughter grow up. So we made our decision, went and saw the oncologist yesterday and we are getting started soon. My doctor is amazing and he explained everything so thoroughly. I will have to start treatment this week and I will see the doctor every 3 weeks to get my blood drawn and to monitor my health during treatment. The side effects can vary from person to person. I know it it's going to be tough, but I am hoping and praying for the best. I know it is up to me to stay positive and know we will get through this. Treatment will last 6 months. I will be taking a chemotherapy drug called <a href="http://www.xeloda.com/starting-treatment/side-effects/">Xeloda</a> in a pill form. The pills are taken in the morning and evening every day for 3 weeks, then have one off week. I will repeat this cycle 6 times. Unfortunately I'll have to wait 4-6 weeks after I complete chemo to have my second surgery, so I will have to hang out with this ostomy bag for a while longer. They said I need to have the drug completely out of my system before I have surgery because it can weaken my immune system and my ability to heal. Sure, I'm bummed about having my ostomy for another 7-8 months (that will put me at having one for almost a year) but I know it will be ok. Now that we figured out all of that, I am not in anymore pain and I feel like it will be fine. Treatments will start this week. Thanks for all of your thoughts and prayers. I will keep you all posted on how I am doing and how I am tolerating therapy. Love you all & Merry Christmas.Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com4tag:blogger.com,1999:blog-1689016434667760949.post-34809828967992917522011-12-14T06:27:00.000-08:002012-04-13T08:15:25.032-07:00Post 21: Finally feeling like myself again! (minus an organ) 7 Weeks Post Op. <br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBhC9UZkfCyBNHv7OQQ4WTLUZNp48wMI4fWXZFfDYxz0gQxvm5jHgO0Mz0lwmthAAlyhiy41r41Erjtc6i1bdEgwaKb8U-ld3ZxSFZrLbaLY6p-0BE7SRRtX97skYomMLb8e6pBiouqm00/s1600/ileoanalpouch.jpg" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBhC9UZkfCyBNHv7OQQ4WTLUZNp48wMI4fWXZFfDYxz0gQxvm5jHgO0Mz0lwmthAAlyhiy41r41Erjtc6i1bdEgwaKb8U-ld3ZxSFZrLbaLY6p-0BE7SRRtX97skYomMLb8e6pBiouqm00/s320/ileoanalpouch.jpg" width="258" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><strong>Diagram B</strong> is the current state I am in after my first surgery. <br />
Total colectomy and JPouch procedure complete.<br />
Now I am healing and waiting on my second surgery<br />
(<strong>Diagram C</strong>)so I will no longer need an Ileostomy. </td></tr>
</tbody></table>
Im so happy to say things are looking up this week. Last week I took a turn for the worse and was feeling faint and exhausted mainly due to dehydration. Since I don't have a colon anymore (and the colon's responsibility is to absorb water) I added 3 things to my diet that have helped me tremendously. I feel like a new person this week! <br />
<strong>Along with drinking a gallon of water a day I have added:</strong><br />
<ul>
<li>3 small cups of gatoraide throughout the day (to replenish electrolytes)</li>
<li>Salty snacks like pretzels (helps keep my salt levels up so I can retain water)</li>
<li>Immodium pills before breakfast, and before bedtime (slows things down so my small intestine can learn how to absorb water & nutrients better) </li>
<li>I also STAY AWAY from sugar, fatty foods or anything fried. This can and cause watery stools = dehydration. It's just not worth it. I look at a cookie or something fried, and sure it looks good. But the way I feel after I eat it makes it not worth it to me.It's not good for me anyways. </li>
</ul>
Right now I am on a pretty restricted diet. I can't have any raw fruits or vegetables, anything with skin, no nuts or seeds, or whole grain. I pretty much stick with grilled chicken, rice, mashed potatoes, applesauce, banannas....things that are pretty bland. As things improve, I can slowly start to add more foods. <br />
Here is a list of <a href="http://nutritioncaremanual.org/vault/editor/Docs/IleostomyNutritionTherapy_FINAL.pdf">good and bad foods for people with an ostomy.</a> <br />
<br />
I have been well enough to go back to work and I've been able to stay the whole day! It's been great to get out of the house and see everyone. I missed my co-workers and students so much. I was also able to go to target with Phillip and Elise last night for a little while. I was pretty beat, but I am just so excited to be able to get back in the swing of things. Phillip grabbed my hand in the car and said he was so happy because he felt like he was finally getting his wife back. He said I had my spark back and this made me so happy. It's been a long road and I wondered when I would ever feel like myself again. So I have to say, 7 weeks out of surgery I am feeling pretty good!Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com0tag:blogger.com,1999:blog-1689016434667760949.post-58479303750065567502011-12-14T06:00:00.000-08:002012-04-13T08:18:09.473-07:00Post 20: The stress of applying an ostomy pouch. (we finally got it right!!!)This is a long post, but I really wanted to list some information about learning how to get my ostomy bag applied correctly. In some of my previous blog posts, this was one of my main complaints. It is really traumatic physically and emotionally when you come home & see yourself in the mirror with a bag attached to your stomach. And then you have to learn how to change it, clean it. And how to do it correctly. If you or a loved one is ever faced with this, I strongly encourage you see a certified ostomy nurse who will be patient and gentle with you, and who can explain it every step of the way. Everyone is different, everyone has a different size and shape to their stoma. What will work for one person will not work for another. There are so many products and types of bags out there. It's really overwhelming. I am listing below what works for ME. Hopefully it will help someone. <br />
<br />
If you are reading this and are confused about what a Stoma is. <a href="http://www.jpouch.net/2009/06/10/the-first-surgery-one-month-later/">Click on this link</a> to see a picture. WARNING, it is graphic. This is NOT <em>my </em>stoma, but a link to a blog of a brave individual who blogs about his JPouch surgery experience as well. I am not brave enough to photograph mine yet and put it on here. Maybe some day I will. I have even thought about maybe doing an instructional video someday....we will see. I will have to get really brave! I am really proud to say I have come very far with this whole process. When I first got home I could not look at myself in the mirror. I would cry holding a pillow over my face, and my husband had to empty it and change it for me while I layed on the bed because I couldn't do it. My skin was also breaking down around the stoma. It was just completely raw because we couldn't get it to fit properly. I was in a tremendous amount of pain and it took us almost an hour to get it applied properly. Now I am happy to say I can change it myself looking in the bathroom mirror in 5 minutes flat with little to no discomfort. I can look at it and it doesn't bother me anymore. It doesn't define who I am. I just realize that I am still ME, the only difference is how I go to the bathroom. Now that I am not in pain I am enjoying my life again with my family. <br />
Bags, pouches, appliances....whatever you choose to call them, come in many shapes and sizes. The trick is to find the right one for you and your skin type. People with an ileostomy need to wear a bag on a full time basis. This is because you cannot control when the <strong>stoma</strong> (small part of the small intestine sticking outside of the body) is going to work - in fact it will probably work 95% of the time! It is therefore, essential that you find an appliance system which suits both your skin type and your lifestyle. <br />
You will have the choice of either a one- or a two-piece system. There is no better system - it is simply a matter of what you prefer. Both types are drainable, meaning that you can undo the tie or clip at the bottom of the pouch and empty it as needed. <br />
<br />
<a href="http://www.convatec.com/" target="_blank"><img align="right" alt="1 piece systems" border="0" hspace="10" src="http://www.ostomates.org/graphics/1piece.jpg" /></a><br />
A <b><i>One-Piece System</i></b> <br />
A one-piece system is just that - one-piece. It means that the wafer (the part that attaches the bag to your skin) and the bag itself, are all in one and cannot be pulled apart. You just stick the opening over your stoma. You have to make sure you correctly measure your stoma and the bag opening so they match. You will change the whole appliance about once or twice a week. <br />
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<a href="http://www.convatec.com/" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;" target="_blank"><img align="left" alt="2 piece systems" border="0" hspace="10" src="http://www.ostomates.org/graphics/2piece.jpg" /></a></div>
<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">
<b><em>Two-piece Systems</em> (What I use)</b> means that the wafer and the bag are separate and are joined together by what is commonly referred to as a "<u>tupperware-type ring</u>" on the wafer. The wafer is designed to stay put for a while and the only thing that you will need to change on most occasions is the bag itself - just attach the new bag to the wafer. I like to be able to change the bag when I feel like it is getting gross without having to change the wafer/seal. Neither one is better, It's really just what you prefer. I also like to put my wafer on seperately so I can see that I have a good seal on my skin and see that it is fitting properly, then I like to snap the bag on. Seeing the wafer seal on my skin just makes me feel better knowing I applied it correctly. <br />
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<strong>After MANY trials and errors, below are the products that work great for me:</strong> <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX3jMZvJ4vleJsx3v36ulQlLpka7TLOc1LkbUqYC2NLfTw6-Dzlinldyzsw1gVNzxAbKyQrG0Dh9IfmJp4QoTszHz_BV-fjDev_d9hF-dLGYPqeuvwfGJ8AG-_QiGlAlyG627NfeS5KvO2/s1600/ostomy+014.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX3jMZvJ4vleJsx3v36ulQlLpka7TLOc1LkbUqYC2NLfTw6-Dzlinldyzsw1gVNzxAbKyQrG0Dh9IfmJp4QoTszHz_BV-fjDev_d9hF-dLGYPqeuvwfGJ8AG-_QiGlAlyG627NfeS5KvO2/s320/ostomy+014.jpg" width="239" /></a></div>
This is how I start. I lay out all of the materials I need on my bathroom counter. Yes the marshmallows are supposed to be there :) I will explain those in a minute. </div>
<br />
<ul>
<li>convex moldable wafer</li>
<li>Eakin seal</li>
<li>scissors (to cut the eakin seal)</li>
<li>adhesive remover wipe</li>
<li>skin protectant barrier wipe</li>
<li>Rags-one dry, one wet </li>
<li>Stomahesive protective powder</li>
<li>pouch with filter</li>
<li>gauze (to put over the stoma just in case it gets active!)</li>
<li>marshmallows</li>
</ul>
<br />
<ul></ul>
<ul><strong><u>Step 1</u>:</strong> While I lay everything out, open packages etc., I eat 4-5 small handfulls of marshmallows. They work amazingly well at slowing down the stoma!!! The stoma is constantly active, so eating these slows everything down and gives me a good 5-10 minutes without anything coming out. I also have to find the right time of day to change my appliance. What works for me is about 5pm (after work & before dinner). This seems to be when my stoma is least active. For some people it may be in the morning when they wake up. You just have to find the best time for you. After I eat my marshmallows, I close them up and put them away and get ready to begin. </ul>
<ul><strong><u>Step 2</u>: </strong>I place the dry rag in the waist band of my pants. It protects my pants from getting dirty, but also works as a handy "towel rack" so I can have it there when I need to wipe something away. <div class="separator" style="clear: both; text-align: center;">
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<strong><u>Step 3:</u></strong> I use an adhesive remover wipe to remove the old wafer & bag. My skin is super sensitive, so I can't just pull the thing off. OUCH!!! The adhesive remover wipes work great to help lift the wafer off my skin without damaging it. You just have to make sure you wipe your skin well with a warm wet rag afterwards to remove any residue. If it is left on, it can prevent the new wafer from sticking. </ul>
<ul><strong><u>Step 4</u>:</strong> After the bag/wafer is removed, I use the wet towel to wipe around my stoma. I clean off any adhesive remover and try to remove any old wafer residue. I inspect my skin around the stoma to make sure it is not raw or irritated. I make sure my stomach is clean and ready for the new wafer. Use water ONLY. Soaps can cause the new wafer to not stick. I throw the old bag/wafer in a plastic grocery bag, tie it up and throw it out. By now those marshmallows are working great! *My skin used to be AWFUL. It was raw and bleeding. This was because I did not have a good seal around my stoma. The stool that comes out of the stoma is very acidic and will burn your skin. That is why it is so important to get a good seal. If any stool leaks under the wafer, the skin will become severely irritated. If it is burning, the wafer needs to be changed. It means there is a leak. <div class="separator" style="clear: both; text-align: center;">
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<strong></strong></ul>
<ul><strong><u>Step 5</u>:</strong> Stomahesive powder. This stuff is a lifesaver. After my skin is cleaned with the rag. I pour this stuff all around my stoma. It will stick to any raw, weepy skin and create a healing "scab." The powder really heals and helps protect the irritated skin. I really pour this stuff on and then pat it into the skin. This is where that towel tucked in your pants waistband comes in handy. I use the towel to gently brush away any excess. <div class="separator" style="clear: both; text-align: center;">
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<strong><u>Step 6:</u></strong> Pat the skin barrier wipe over the powder to "seal it in." Then wipe the protective wipe all over your stomach where the wafer will stick. This will help protect your skin from the adhesive. It is also sticky so it helps the appliance stick better without irritating your skin so much. <div class="separator" style="clear: both; text-align: center;">
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<strong><u>Step 7: Eakin Seal.</u></strong> I use an eakin seal to give my skin just a little more protection. This is a moldable ring like a puddy. You can make it fit snugly around the stoma. I actually use scissors and cut it in half, then press it together to make the hole in the middle smaller. I have a small stoma (about 7/8 of an inch) so I need to make the opening as small as I can. If the stoma were larger, I would just stretch the opening to fit. I then place this around my stoma. It will stick to your fingers, but if you use the wet rag to pat it down, it will stick to your stomach and not to the wet rag.</ul>
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<strong><u>Step 8: Applying the wafer. </u></strong>I now use a "convex" wafer meaning the opening curves in to help make my stoma stick out more. Since I have a temporary Ileostomy, my stoma does not stick out as far as a permanent one would. This sometimes causes a problem because the stool can leak under the wafer since it is relatively flat to the skin. But by getting a convex design, it pushes down on my skin and helps to push the stoma out a bit. Here is a picture of a regular flat wafer (top) and a convex wafer. (bottom) *On of the main problems is the flat wafer's opening was too large. I had the wrong size and it was causing stool to touch my skin! = Pain!! The bottom wafer has a small opening that I can mold to fit my stoma. The wafer is puddy-like and soft. With the warmth of your fingers, you can mold it to the exact size of the stoma. I stick the wafer right on top of the Eakin seal and use my fingers to press the opening around the stoma. The red stoma sticks out of that little hole. I then peel the paper backing off of the sides and stick that to my skin. <div class="separator" style="clear: both; text-align: center;">
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<strong><u>Step 9: Snap on the bag.</u></strong> Snap the bag on to the wafer like a tupper ware container. I use a bag that has a filter at the top. This lets out any trapped air/gas and helps keep the bag flat. It does not smell at all. I really like these bags too, because you can not see through them. When you are in the hospital you will have a clear bag so the doctors can see your output. But I was sick of looking at it, so I got the tan colored bags. When you shower or bathe, you have to put a little sticker (supplied by the company) over the filter so water will not ruin it. If the filter gets wet, it will not work anymore and the bag will fill up with air like a baloon. Not very attractive under clothes! </div>
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*Right after surgery, you might want to snap the bag on <em>before</em> you apply the wafer. This is so you don't have to push on your abdomen. After a few weeks when you are not as sore, you can snap the bag on afterwards. It helps to stand up and tighten your abdominal muscles so you can press it on. It also helps to put a little patroleum jelly on the ring to help it snap on easier. </div>
Finished! I then sit in a chair and put a little heating pad (like a rice pack) that is warmed just slightly over my appliance. Don't make it too hot. This isn't good for your stoma. The warm heating pad helps the wafer mold & adhere to my skin. Since I have been doing this whole process listed above, I haven't had any leaks and my skin has healed!!! This makes me one happy girl!!! </ul>
<ul>Yes, it is a long process. It used to take us an hour, then it would leak. I would be in pain and crying from frustration. One night we had to change it twice and I was an enotional wreck. But it DOES get easier over time. Now I can do it easily all by myself. My skin around my stoma looks great and I can move on with my life pain free. This has brought me so much confidence. I have realized that if for some reason in the future, If I ever had problems with my JPouch and had to go back to this, it would be ok. It's not pleasant, but it does not define me. It's just part of life now. I have a great life and I am excited to live it. This will not get in my way! </ul>Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com0tag:blogger.com,1999:blog-1689016434667760949.post-76050201345110384412011-12-08T12:53:00.000-08:002012-04-13T08:19:41.381-07:00Post 19: Update 6 weeks after surgery:This week has been a tough week. I was just starting to feel a little better. Wanting to get out a little. Mostly Phillip will just drive us around a bit to get me out of the house. Sometimes I can walk around the store for a little while. My ostomy was feeling much better. I was optimistic that things were looking up. Unfortunately, I've had a very rough week. Over the weekend I had plans to go out to dinner with my best friends. This would be the first time out at a restaurant in a long time and I was excited to see my friends. Unfortunately I was extremely dizzy and blacking out and couldn't go. I also was planning on starting back to work this week, and I am extremely upset I haven't been able to do that either. All week, when I would stand up my heart would pound and I couln't see for a few seconds. I was having a hard time eating anything and I really had to force myself to eat or drink. I have been working hard following a special diet to get my output in my ostomy bag to thicken up. Since the primary source of your colon is to absorb water, and now that I no longer have a colon, I have to eat very carefully and choose foods that will not cause liquid or watery stools. No matter what I did, my food was going through me as fast as I ate it and it was turning into pure liquid. I went to the doctor and they did some bloodwork. It all came back within normal ranges, so we think the reason I was blacking out was due to low blood volume. Meaning my body has not been absorbing the water I've been taking in, causing me to get really dehydrated. I was given IV fluids. I still don't know what caused the watery output. I thought I was doing everything right. I guess my body is still adjusting and my small intestine is still learning how to take on it's new role. It is having to learn how to absorb liquid like my colon once did. I went to the doctor Monday and I still don't feel great today, 3 days later.<br />
I am still extremely fatigued and I still feel my heart working really hard to pump the blood through my body. I guess it will just take time. If It does not improve over the weekend I will make an appointment with my surgeon to discuss taking a medication such as Lomotil or Immodium to try and slow things down to give my body the chance it needs to absorb the water I am drinking. It's been a long road. I am finally getting my pain under control, but now this dehydration and fatigue has snuck up on me. To make things even more stressful, I found out my grandfather passed away and I was too sick to travel to his funeral. I was devistated. I have experienced some depression this week because I am too tired to do ANYTHING. I want so badly to play with my daughter and go shopping with Phillip for Christmas presents. I want to enjoy my life again and see my friends. Feeling like this has kept me in bed for most of the week. It has been really tough and I have had a lot of "how did I get here & what has happened to me?" moments. Lots of feeling sorry for myself. I am trying hard to change my state of mind and keep positive. But it is hard when you want so badly to get back out there and be normal again, but my body has other plans. I keep telling myself It could be worse and I am so lucky to be doing as well as I am. I am trying very hard to stay positive and see the good days ahead. <br />
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I also had a visit with my oncologist last week. They had good news and bad news. The good news is they are 80% sure I am cured and think they got it all with surgery. The bad news is the tumor was gigger than they thought. It was staged at T2, but after biopsiies it is actually categorized as a T3 tumor. There was nothing found in my lymph nodes thank God. But the oncologist explained it like this: The tumor is like a well established plant in a pot. It has started putting out strong roots, but hasn't broken through the pot yet. Good to hear it did not break through the colon wall yet. However, when you have a T3 tumor and you have stage two cancer, they like to suggest the option of chemotherapy. This is totally up to us. It may only increase my cure rate to 83-85% so we are not sure if it is beneficial enough to go through with 6 months of chemo. We are doing some <a href="http://http//www.genomichealth.com/">Genomic testing</a> on the tumor cells to learn more about the specific makeup of my cancer cells to see if it has a high or low chance of re-occurance. If it has a high re-occurance rate this will give us a decision about the chemo. We are still waiting for the test result and should be hearing back in a few days. I am really scared and have not been sleeping well. We just pray that the test will bring us good news and I can skip the chemo and keep healing. If I don't have to do chemo, I will have my second reconstruction surgery in about 2-3 months. If I do have to do chemo, I will have to wait until the middle of next year for my next surgery. We will keep you updated on what we hear and if my health improves within the next few days. Thank you all for your thoughts and prayers.Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com1tag:blogger.com,1999:blog-1689016434667760949.post-59037819405934398492011-12-05T10:34:00.000-08:002012-04-13T08:20:39.210-07:00Post 19: Things I didn't knowBefore my surgery I tried to research and educate myself as much as possible so I wouldn't have any horrible surprises. I wanted to read the good and the ugly so if anything weird happened I could rest assured that it had happened before and I will be ok. Nothing can really prepare you for a surgery though, because everyone is so different. I wanted to list a few things...some good and some bad...that came as a surprise to me. <br />
1. I didn't know how emotionally draining this would be. Yes, physically it has been rough, but the emotional healing has been very difficult - if not harder than the physical pain. Not being able to do the things I love, feeling like I am being a bad mom and bad wife. It really takes a toll on you. Seeing myself in the mirror with my scars and ostomy bag is still taking some getting used to. Somedays I couldn't look at myself. But It DOES get better. It just takes time. <br />
2. I didn't know how TIRED I would feel. My doctor said I needed 6-8 weeks. Sure, I thought. That won't be so bad...I thought I would feel better way before that. I thought it would be like after you have a baby. Sure you hurt, but you can still move around and you get your energy back fairly quickly. Not this time. I was unaware of just how exhausted I would be. Somedays I could barely get out of bed. I need to nap quite a bit as well. I am looking forward to getting my energy back someday! <br />
3. I wasn't aware of how nauseaus I would be. I thought once I was given the OK to eat, I would want to. This hasn't been the case. Food has been my enemy and I have had to force it down. I'm not sure why I am so nauseous all the time, but it's no fun. <br />
4. I didn't know I would lose so much weight. I think the whole nausea thing is the blame for this one. Since I have to force myself to eat anything my weight has dropped pretty fast. In 6 weeks I have lost 20 pounds. I can't say I am totally disapointed in this, as I have lost the baby weight and that makes me happy. But feeling sick and that being the cause of it is no fun. <br />
5. My colorectal surgeon should add "plastic surgeon" to her title. I have a really great surgeon. She is very much a perfectionist - which is what you should be when you are a surgeon! My incisions look pretty awesome. They are healing well, they are clean straight perfect lines. She really did a great job putting me back together. :) Luckily I was able to have the surgery lapriscopically. Now with the internal stitches and the skin glue they use, all the marks on my stomach are healing so well. Years from now I don't think they will even show much. I have one large incision at my bikini line (kind of like a c-section) One line on each of my sides, an incision in my belly button, and the hole from my drain, and of course the hole from my ostomy. My stoma/ostomy site is pretty small which is good, so that should not be a large scar after they close it up during my second surgery. <br />
6. I didn't know how painful this would be. I would love to be super positive for anyone who might be about to go through a j pouch surgery and say it wasn't that bad. But sorry, this has been rough. It has been the hardest 6 weeks of my life. I has been very painful. However, it has been getting MUCH better. You just have to be patient with your body. It needs time. And it does get better with time. <br />
7. I didn't know how lonely I would feel. I have wonderful friends, family and co-workers. They have been there for me and have been absolutely amazing. Especially my husband, Phillip. He has taken on the role of not only being my main care-taker. But he works full time, does all the housework and takes care of all of the stuff I can't do for Elise. He lets me sleep in and wakes up with her in the middle of the night. He has been truly amazing and I am so grateful to have such an amazing husband. Even though I know I have people there for me, I still can't express how lonely this process has been. I don't know any new mothers in their early 30's who have had colon cancer and who have gone throught this procedure. Every new pain or strange feeling is scary, I don't know if I'm normal or if something is wrong. I don't know what to wear to cover up the ostomy bag, I don't know what to eat, I don't know if the physical and emontional feelings I am having are normal. I wish sometimes I had someone to talk to who has been through this same situation. Just to have someone to ask questions and to tell me, it's normal and that I am going to be ok. <br />
There are a few more things I am sure I will think of that I can add to this later.Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com0tag:blogger.com,1999:blog-1689016434667760949.post-15843475691143334132011-11-28T10:00:00.001-08:002012-04-13T08:21:41.797-07:00Post 18: Five weeks post surgery #1Sorry I haven't written in a while. A lot has been going on, and I've had lots of ups and downs. My spirits have been so much higher after our Thanksgiving weekend and I am feeling the best I have yet today. I thought today would be a good day to write and try to update everyone a little bit. Spending the last 4 days with Phillip, Elise and our family for Thanksgiving helped me so much. I want to share a few good things that have made me happy along with some news from doctors appointments we've had during the past couple of weeks.<br />
First off, I just want to say thank you again to everybody for all of the prayers, sweet messages, meals, flowers, phone calls....it has meant the world to me. Last night Phillip, Elise and I took a stroll around our little cul-de-sac. I am able to walk short distances now that some of my pain issues have been helped. (I'll tell you more about that in a bit)<br />
Phillip spent all day Saturday putting Christmas lights on the house. He worked so hard making it look pretty for us! As we were walking down the street, I looked up at the house glowing with lights decorated for Christmas, and I just burst into tears. It was just so beautiful and I felt so grateful. How did I get so lucky? I have this amazing husband who loves me unconditionally, and thinks I am beautiful even when I feel disgusting. We have a beautiful, healthy baby girl who is smiling and giggling at me when I look at her. And we have a beautiful safe, warm place to call our home. Something inside of me changed and I knew everything was going to be ok. We have this little bump in the road to get over, but I still feel like the luckiest girl in the world.<br />
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In my last blog post I talked about a few challenges I was having. I'm happy to say a lot of those issues have become so much better! For several weeks I felt like I was doing nothing but measuring body fluids. It was becoming too much. I originally agreed to take part in a study to show how fluid intake effects the health of new ostomy patients. I had to record every ML. I drank, and record my output too. I emptied my ostomy bag, measured that, measured urine, and had to measure what came out of my drains. It was just gross and it really took a toll on me. I felt disgusting. I think it was important at first to show me how much water I needed to drink. They said over half of us who have this surgery would end up back in the hospital. I was determined to not let that happen to me. So seeing how much liquid I was losing did help me see how important it was to drink up! However, after recording this info for a few weeks, I asked if I could kindly be released from the study. I needed to not have this on my mind all the time. It would take so long measuring and cleaning up. I just couldn't do it anymore. The doctors were great and said I had been doing a good job and let me out of the study. Since I've stopped recording it, it has helped my spirits tremendously!! I don't have to think about it so much. Just as long as I make sure to drink at least 2500ML a day. I fill up my big Nalgene bottle throughout the day, and don't go to bed until I drink over 2 bottles full. Problem solved! :)<br />
Another good thing is I visited a certified ostomy nurse at Shands, in Gainesville. Unfortunatey there are no certified ostomy nurses anywhere in this area. I have had 3 home nurses come out, and I know they were doing the best they could in trying to help me. But with something like this, you really need to see someone who specializes in ostomy care. The ostomy nurse helped teach us some tricks and it has helped my skin heal. With this pain gone I am able to be much more active. She really was a lifesaver. While we were at the doctor's office I alos had my drain removed! I was so HAPPY to get that thing out of me. I felt like I was always having to be so careful so it would not get pulled. It was bulky under my clothes and I was so happy to see that go! <br />
Since some of my pain issues are gone I've been able to hold Elise more. I still place some pillows over my belly so she won't accidentally kick me where my inscisions are. This has made me so much happier. It has been so emotionally painful not to be able to hold my baby girl. I still can't be the active mom I was before the surgery quite yet. But it's a start! <br />
Soon I really want to post about how I learned to get my ostomy appliance to properly fit. This issue was so diffucult emotionally and physically. There are a lot of details to cover, so I wil write about this more later. <br />
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<br class="webkit-block-placeholder" />Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com0tag:blogger.com,1999:blog-1689016434667760949.post-5032625631703481902011-11-11T12:09:00.000-08:002012-04-13T08:22:46.555-07:00Post 17: Update post surgeryMeredith here! Just wanted to let you all know I am alive and kicking. It's been 18 days post surgery. What a journey this has been for us so far. Mom and Phillip have been amazing and have been taking great care of me for the past two weeks at home. I've been wanting to write sooner, but haven't felt quite well enough yet. I can't say I am having good <span class="Apple-style-span" style="font-style: italic;">whole days </span>yet, but I am having more and more good <span class="Apple-style-span" style="font-style: italic;">moments</span> each day. I am healing a little bit more - emotionally and physically - each day. Some days are the lowest of lows, and I feel like I will never be better again and I don't know how much more I can take. But then I have to try and remember how far I've come, and how much I have improved since those first couple of weeks. I am a different person than I was 18 days ago for sure. I have to remember there is a light at the end of the tunnel. Elise helps me see it. I can have the worst day ever and her smile will completely transform my mood and spirit within minutes. We've been taking her to daycare while my mom takes care of me during the day. When Phillip gets off of work they pick her up and I get to see her for a little while each evening.<br />
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Most days have been tough, but when I do have a good moment, I use that time to try and eat something, make sure I am drinking enough fluids, brush my teeth or wash my face, or get up and try to walk a bit. I find that after I do anything small I am so exhausted that writing just hasn't fit into my day quite yet. I have so much to say, but I am still a bit overwhelmed and emotionally and physically drained.<br />
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Right now I am having 3 major challenges. I actually have MANY more....but I am trying to tackle just a couple at a time. Thinking past these right now will send me over the edge. I am just trying to focus on things I can control right now.<br />
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My first challenge, and biggest of all, is I am having a very difficult time not being able to hold or play with Elise and be the mommy that I want to be. It physically hurts my heart not to be able to pick her up when she needs me. I cry about it a lot. I try to be positive and tell myself that this will pass soon! But it is hard because I miss her so much. Just feeling her in my arms is all I want sometimes. I haven't held her in so long. I desperately needed to just hold my baby last night, so we figured out a way for it to work so I wouldn't be in pain. Last night was the first time I was able to really <span class="Apple-style-span" style="font-style: italic;">hold</span> Elise. We put some pillows around my stomach and while she was sleeping we gently put her on the pillows so I could just wrap my arms around her. I still can't have her touching my stomach, but at least I could have her near enough so I could keep my face close to her head. I just kissed her hair and smelled her. She smelled so good and she was just so sweet as I sat there and watched her sleep in my arms. Thankfully I was able to stay in this position to hold her for almost an hour. My pain was getting too intense to hold her anymore but I did not want to let her go. I was very thankful for this time with her last night. It was so good for my heart and made me so happy. At that moment I was TRULY, purely happy again. I am getting kind of choked up writing this. I hope I will be able to do this every night now and eventually get rid of the pillows! :) I love that little girl so much.<br />
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My second challenge is trying to get my ostomy bag to fit. I will explain this more later, but this has been the source of most of my pain and stress. Once we get this figured out, I am going to write a detailed entry on this issue! I never knew how frustrating this part could be and no matter how much research I have done or how many different nurses who have tried different things, we are now just starting to get it to fit....we think. No two stomas are the same on anyone, and trying to get the ostomy bag to fit properly is basically trial and error. It is so important to get the right fit around your stoma or the stomach acid will leak out and eat your skin away. I have had nurses come out to my home for the past two weeks to help with this issue and we still have not been able to get the right fit yet. Once you do, you have to order all of your supplies and correct size....it's very complicated to explain and I will get into the details later. Let's just say, my bag has not been fitting, it has been leaking onto my skin all around my stoma and my skin has been burned away by the stomach acid. Keep in mind that I still have to continue to adhere a bag on top of this skin that is already raw while we try to heal it. I have been in excruciating amounts of pain and pray that we will get this figured out soon. I just got my new sample products in the mail a few minutes ago that will hopefully fit better, so as soon as Phillip gets home we are going to try the new products. Please pray for us that this works. I want my life back and I won't be able to do anything or be in less pain until I get this thing to fit.<br />
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My 3rd big issue is all of this liquid input/ output, measuring......it's hard. Anything I drink I have to measure and write on a chart. I have to empty my ostomy bag and measure and record that, measure my urine output, and I have a drain still attached to my stomach. I have to empty the drain, measure that liquid and record it as well. All I do is measure liquid all day. It is exhausting, nauseating, and makes it impossible to get all of this out of my mind for even a few minutes. I have to do this for a while because over 50% of new ostomy patients end up right back in the hospital due to dehydration. I have to make sure my input is equal to or greater than what comes out of me. Fun huh??? That takes up most of my day along with the timers that go off that tell me when my next medicine is due. Makes for some long days.<br />
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I have a lot more to say, but I am getting really tired and need a nap before Phillip and Elise get home. Hopefully we can have some more family time tonight! I will try to write more again soon. Love you all and thank you for your thoughts and prayers. You all have been an amazing support system to me. I am so grateful for you all. Thank you for also taking such good care of my mom and Phillip. Thank you for bringing them meals and helping them out so much so they can give me the best care they can. It means the world to us. <br />
<br class="webkit-block-placeholder" />Meredithhttp://www.blogger.com/profile/00535305881220350228noreply@blogger.com3tag:blogger.com,1999:blog-1689016434667760949.post-57124355130510396642011-10-29T07:22:00.000-07:002012-04-13T08:23:23.179-07:00Post 16: Day Four After Surgery<div style="text-align: center;">
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Today was a tough day. Meredith's IV pump has been slowed down and has as a result the pumping sound has become much more annoying. During the day it is easy to ignore it but during the quiet night it is about enough to drive you crazy because it is a very inconsistent sound that varies in volume and tempo. A nurse finally ended up getting Meredith a pair of earplugs that helped her sleep much better.</div>
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This morning we had to see a lot of people and it got to be a little too much. The tech usually comes by at around 5am to take blood, they are followed by the first round of doctors that come through at around 6:30am, then comes the nurse shift change at 7am, then at about 7:30 the second round of doctors including the surgeon stops by to update us, then finally breakfast arrives, and a grad student stopped by and wanted to do a survey. The good news is the doctors said that she is doing great and that we will most likely get to go home tomorrow (Saturday). In addition to the usual morning visits we had our most comprehensive session with the stoma nurse so far and that took about an hour. We learned how to completely change and clean everything and talked about managing everything at home. After that another nurse stopped by and talked to us briefly about home care and finally they took Meredith completely off her IV's and we started to manage her pain by oral medication.</div>
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In addition to our busy morning we got to see our little girl again but in combination with our busy morning is was just a little too much for Meredith who was exhausted by this time. Meredith finally got to take a nap at about 3pm and once she was out and she was pretty much done for the day. I went to the main hospital food court across the street and got her a grilled chicken sandwich for dinner and we just relaxed for the rest of the evening. </div>
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For me the past several days has been very challenging. I want to be here and help Meredith through her recovery but it is no walk in the park. The couch/bed that they have in the room really isn't too bad to sleep on but as anyone who has stayed a night in a hospital knows, it is tough to get rest regardless of how comfortable you are. I have really learned a lot and think that it will really put me in a good position to continue help Meredith when we get home. The hardest part has definitely been being away from our little girl. It may sound weird but I cannot wait to be woken up by her cry at 3am! I really miss her and getting to see her these past 2 days has helped a lot but I am really ready to be at home with my family. I would say this to anyone that has a spouse that is going through a similar situation, it is not easy but it is worth it. I feel that constantly being by Meredith's side has helped her more than I can know and will only strengthen our relationship. Boy am I ready to be home!</div>
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