Post 22: Chemotherapy: 8 weeks Post Surgery

It'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 OncotypeDX 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 everything 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 Xeloda 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.

Post 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.
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.

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 Genomic testing 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.

Post 12: Surgery Went Well!

Hello everyone, Phillip here, Meredith is resting so I am taking a shot at blogging. Today started early for us. We were up at 3am so we could make it to Shands by 6am. The hardest part of this morning was definitely leaving our little girl behind. Elise woke up just in time for us to feed her before we left. Meredith said that she flashed her little grin at her as she dozed back asleep, a perfect goodbye she said. The drive was pretty uneventful and the hour and a half flew by.We got to the hospital right on time and they took her back pretty quickly. They really had things moving along for it being so early in the morning. They let me back as everyone was coming by to make sure everything was in order. My dad was in town so he stopped by and said a prayer for us and let us know he loved us. We briefly met with the stoma nurse and she marked Meredith for her stoma X marks the spot! After that we met with the surgeon and the anesthesiologist, they gave her a little something to start calming her down and within seconds she just started chatting, I kissed her and they took her back...

Meredith's mom and sister joined me in the wait after they dropped Elise off at daycare and made the drive. The surgery lasted six hours and they kept her in recovery for another 3 hours before they let us see her. After the surgery the doctor came out and told us the operation went better than expected and we are now waiting for pathology results. The wait was really hard but it was good to finally see her. Unfortunately Meredith was having a pretty serious panic attack and it took a bit before they could give her something to calm her. She is resting now and doing much better.

I have really got to thank the staff at Shands. To this point they have exceeded my expectations and have really gone the extra step in helping feel that we are in good hands. Thank all of you for your thoughts and prayers, we will be home soon.