Saturday, October 29, 2011

Post 16: Day Four After Surgery

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.

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.

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.

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!

Friday, October 28, 2011

Post 15: Third Day After Surgery

Doctors have said that Meredith is looking good! She was moved to a regular diet and can eat solid food again, but getting back in the swing of eating solids takes a little bit of time. Usually after a meal Meredith experiences some pain that seems to be caused by digestion and any gas causes quite a bit of discomfort. I also tried helping her empty her bag for the first time and I ended up making a mess! Fortunately the stoma nurse stopped by a little later in the day and educated us some more on the bag and we are starting to feel a little more confident about using it now.

Meredith also was able to have her catheter removed today. Each one of these small steps is really a blessing because between the oxygen, catheter, IV, pressure socks, painkiller PC, drain and ostomy bag all on top of a serious surgery you can get tangled up / claustrophobic and getting up to move around can really become a production. Today while trying to get Meredith up for a bit her drain got caught in the covers and I accidentally gave it a tug... I felt absolutely terrible and it really hurt Meredith. On top of that Meredith has also still been experiencing some of that diaphragm and shoulder pain that we think was caused by her surgery CO2. Despite the setbacks we still managed to get up and walk the "block" tonight.

Meredith's mom and sister brought Elise so we got to see our little girl Elise today and it really brightened my day, she really helped me recharge. Meredith really enjoyed getting to see her too, she really got us to refocus and we are excited as ever about getting home. They said that if everything keeps going well that we can expect to go home Sunday.

Thursday, October 27, 2011

Post 14: Second Day After Surgery

Today started off pretty good. Meredith got to take her first sip of water in two days over the night and her ileostomy started producing so they put her on a clear liquid diet. First thing this morning I helped her up and went to the bathroom so she could brush her teeth, she was excited about that! After that she sat in her chair for a bit, we thought the day was off to a pretty good start. That unfortunately was the high point of the day. During laparoscopic surgery they pump you full of carbon dioxide so they can see what they are doing. This gas can irritate your phrenic nerve and cause some serious pain in her chest and shoulders. This pain has ended up being the primary source of Meredith's discomfort. Even with her morphine drip the pain caused by the gas has been difficult for her to manage. The pain is usually compounded when Meredith has a panic attack that causes labored breathing, it turns into a pretty rough cycle. The doctors have administered adavan in her iv to help calm her and it usually knocks her out.
The pain today has probably been the worst since the surgery and it along with the panic attacks has kept Meredith in the bed for most of the day. Though out the day Meredith has several "accessories" that have to be emptied. She currently still has a catheter, she has an ostomy bag that has to be emptied and she has a drain from the procedure still attached that moves fluid away from the areas effected by the procedure. In addition to having to be emptied they have been administering lovonox directly into her abdomen She was allowed to start her clear liquid diet so it was good for her to "eat" and her ostomy continued to produce. We talked to the stoma nurse today and she educated us on living with the ileostomy and gave us some tips. Tomorrow Meredith's mom is bringing Elise to visit and I cannot wait. She has really been a ray of sunshine through all of this.

Post 13: First Day After Surgery

Today was Meredith's first full day after surgery. Thankfully the morning started out on a high note, they removed her NG tube. It is a tube that goes through her nose and into her stomach and caused her quite a bit of discomfort. At this point she has not had any thing to drink since Sunday, her mouth is really dry and we have a little sponge on a stick to wet her mouth. Even with the tube removed they said she should not drink anything until her stomach "wakes up". To help with that process a physical therapist stopped by and encouraged us to get moving. Meredith was able to get up and sit in her chair for a little while and later in the day we walked her down the hall. It worked like a charm! Over the night she started "producing" so tomorrow she should be able to drink and start a clear liquid diet.

Monday, October 24, 2011

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.

Sunday, October 23, 2011

Post 11: Night before surgery

4 liters of pure refreshment.
It's about 5:30 Sunday night. Elise is down for a nap and Phillip and I are about to pack for a week in the hospital. I don't even know where to start. I go in at 6am tomorrow morning. It's crazy to think this day has come. I have been dreading it for months now. In about 12 hours I will be checked in at the hospital and my surgery will start a few hours after that. I finished my prep. It was a tasty 4 liters that took 4 hours to get down. The instructions said to drink 8 oz. every 10 minutes. I would set my timer, and just about the time I made it out of the bathroom, it was time to drink again. Fun day! I have had so many colonoscopies in the past (and had to do this prep 5 times just in the past few months) so you would think it would get easier. It doesn't unfortunately! Drinking a gallon of salt water isn't very refreshing.

Two things I  have learned:
1) Chug it with a straw. Just put that straw to the back of your cheek and just get it down.
2) Drink more water. Lots more. Even though you feel like you can't possibly drink another ounce, you need to so you will not get dehydrated.  It makes the IV go in easier if your veins are healthy and hydrated. I learned that the hard way.

Since prep is done, now I can just enjoy the rest of the evening with Phillip and my baby girl. I may just have her sleep in the bed with us tonight. I just want to hold her. I can't get enough of her today. I will miss her more than I can even express. My heart hurts right now even typing this. I know she will have a wonderful time with "Grammy" and aunt Amanda. But it's going to be hard leaving her in the morning. We will head out about 4am to head to Gainesville. I have so many thoughts going through my head right now. I won't lie, I am absolutely terrified. But mostly I am just ready to get this next week behind us. I may not be able to write for a few days, so Phillip will keep everyone posted on here. I love you all and thank you for your continued prayers. Wish me luck! I will talk with you all soon. For now I am going to get in some precious family time and can't wait until I get to get home!
Love to you all.

Friday, October 21, 2011

Post 10: Family Pictures

Since my first surgery is scheduled for Monday (10/24), Phillip and I wanted to make sure we had lots of family pictures to take with us to the hospital since we will be there for a week. My sister-in-law, Anna came out with us to take a few of the family! We had so much fun! It really helped me put things back into perspective and it made my heart so happy. Here are a few we took last night. Thank you everyone for your continued thoughts and prayers. We have definitely felt them. My mom and sister will be taking care of Elise next week. Mom will be staying at our house while we are in Gainesville. Plesase keep them in your prayers as well. I am so lucky to have such a wonderful family! Thank you everybody. Your kindness, prayers, and thoughful messages have meant the world to us.  We will continue to keep you updated here on the blog over the next several weeks.

Thursday, October 20, 2011

Post 9: Stress is an ugly monster.

So, this week I had all kinds of fun plans. My plan was to "be normal." Everyday was going to be great! I was going to eat whatever I wanted, go for bike rides, play with my family. Have loads & loads of fun and just enjoy myself before the surgery. Good idea, right? I wasn't aware of this ugly monster called stress that took over my mind and body and made me feel beside myself.

Phillip, my mom, sister, and I planned to take Elise to a pumpkin patch and have lunch this past weekend. I was super excited the day before and ready for my fun weekend ahead. Well, Friday night I couldn't breathe. I felt like I just couldn't get enough air no matter how deeply I took a breath. My heart was pounding, my body hurt. Head was spinning, my face and hands went numb. What in the world was going on? I had no appetite. This can't be happening! I had plans to eat a giant steak and brownies and ice cream this week! I have to because I won't get to eat for a while!! Of course the thought of my "plans" being ruined made me panic more. This continued on and off throughout the weekend between little trips to the pumpkin patch and throughout the day. Yes, we went. I refused to ruin our weekend! I slapped on a smile and tried to enjoy myself between the "crazy moments." The fun must carry on!!

Here are a couple of pictures of Elise we took at the pumpkin patch! This little girl cracks me up and makes me so happy!

Even though we had some fun at the pumpkin patch, I was still worrying too much. Since I had so much trouble breathing, I convinced myself I was getting sick. Oh no! I must have bronchitis, or what if I'm getting pneumonia!! Oh NO!! The doctor told me that if I was sick they would have to reschedule the surgery. NO! I can't be sick!!! My mind kept spinning. Well, with all of this worrying, I eventually made myself sick and couldn't keep any food down. I ended up going into a full blown panic attack and crying like a baby. I felt like a crazy person. I have never had a "real" painic attack. Lots of anxiety? Yes. But a full blown attack?... This was new and scary. For those of you who deal with panic attacks on a regular basis. BLESS YOU. I don't know how you fight this everyday. This is a whole other ball game. My mom kept telling me. You're ok, you're having a panic attack. I google everything. I know, I know. You should never use google to diagnose yourself. All of the symptom charts lead you to make you think you're dying. So I disciplined myself and limited my google search to "symptoms of stress." Aaahhh. I see now. This is why I feel like I am going nuts. Stress is just horrible. It will literally destroy you and make you sick. The mind is a POWERFUL thing. I keep reading the syptoms daily and remind myself, nothing is wrong with my lungs. I CAN breathe. My worrying is making me not able to breathe. Easier said than done! Yes, I still have been having panic attacks this week. No, I have not brilliantly cured myself of my crazy thoughts. I'm only human, right? But I have given myself permission to lose it every now and then. Sure, it is ok to lay on the floor and cry like a blubbering baby. But then I get up, brush myself off and try to push forward.....Or my husband makes me :) I love him! Bless him, he has seen a whole other side of his wife this week! Knowing the physical symptoms of stress and behavioral symptoms helped me realize I'm not getting sick or going crazy. (Maybe just a little crazy :) I am going to get through this and be ok!

Everyday I am reminded of how lucky I am. Aside from having the most wonderful family and friends I could ever imagine, I have the best principal and co-workers ever (who are also wonderful friends). They treated me to a massage yesterday since I've been wigging out. I have tried to keep it together, but they could probably see the twinkle of crazy in my eyes :) It was the best massage EVER!!!!! I tell you, afterwards I felt like a new woman. My spirits were lifted. My body felt better. I felt like me again. Now the massage therapist warned me that I would be all knotted up again in a day or so. Darn. I know the stress may not subside until all of this is over. But hey, a night of good sleep and relaxation did me some good! It's amazing what a little treat like that can do for you. So thank you to my sweet family at Dewar Elementary! It truly did work wonders. A little name dropping here.... Natalie Miller (massage therapist) at Anthony & Company is a miracle worker. Maybe I shouldn't have said that, because I don't want her to be booked up al the time :)

So, my lesson I learned this week. Stress will turn me into a blubbering, crying, pile of mess. Thank you to all of my family and friends who have helped me keep it together and have picked me up when I lose my mind. Three days till surgery. Thank you for reminding me....this too, will pass.

Thursday, October 13, 2011

Post 8: Pre-Op visit

Elise and Mommy right before going
to daycare. She is my ray of sunshine
through all of this! (5 1/2 months old)
Yesterday was our Pre-Op visit. Phillip and I dropped Elise off at daycare and headed to Gainesville. (I am lucky to have my mom to pick her up if we can't get back early enough.) We first met with the surgeon. We were able to ask lots of questions and address any concerns. We were gone most of the day for our Pre-Op appointments. After talking to the surgeon I had to get an EKG to make sure my heart is in good condition, bloodwork drawn, and a chest X-Ray to confirm that I do not have any cardiac or pulmonary issues prior to anesthesia. I also had to see an anesthesia team. I will be asleep for a while for this surgery. It takes a few hours, so they wanted to check my airways, etc. to make sure I was good and healthy. They said my surgeon was a good one, and I would do great. Always a good thing to hear!
Everyone kept reminding me that we are a team and they will be working with our family and helping us along the way. There will be a lot I will have to learn when I wake up from surgery. I will have a colostomy bag (hopefully temporary) and that will take some getting used to. Also they will be getting me up out of the bed and get me walking within 24 hours. Even if it's just around my room at first. They also said I will  be without food for a few days. I'll start with liquids and slowly work back to solid foods. It will be a physical and emotional roller coaster, but I am so lucky to have Phillip by my side. The toughest part is not  being able to see Elise right after the surgery. Elise has been what has kept me happy and going strong. I can have the most rotten day, but as soon as she is in my arms I am happy. My mom will bring her up to see us after a few days when I am feeling a little better.  Phillip will be able to stay with me and help take care of me while I am in the hospital. He will be learning a lot from the nurses on how to help me when we go home as well. Luckily I have my mom and sister who will be taking care of Elise the week we are in the hospital.

I can't tell you enough how lucky I am. I really have the most amazing family, and my husband...I think he is an angel. He is my best friend and has held my hand through every single appointment. I know this is all just as tough for him, if not harder. I know I would rather go through with this than have to watch him, or Elise go through any type of surgery. I know he feels helpless. But the truth is, he has done more for me than he realizes. Just being there to tell me everything will be ok is all that I need.

After 5 hours of being at the hospital, and a two hour drive there and back, we were finally home just in time to give Elise a bath and get her to bed. We missed her so much! We get so excited when we pull in our driveway because we know we are minutes away from hugging and kissing our little girl!

My spirits are still high. During the days I feel pretty good. However, I am finding I don't want to be alone lately. That's kind of unusual for me. I have never been the type that had to always be around someone. I love a quiet afternoon by myself at the house. But lately, I can't handle being alone with my thoughts. The evenings are the most difficult for me right now. After Elise goes to bed I tend to have some anxiety attacks. I guess when it's quiet I have time to think. I end up worry myself sick. Sometimes I am scared to go to bed because I know I will lay there and think about everything....I think, will I make it through the surgery? Will Phillip & Elise be left alone? Has the cancer spread? Will I wake up from surgery with more bad news? Can we handle the medical bills? Then I start to feel guilty about having to be taken care of. I don't want to be a burden.....the thoughts just go on and on. My doctor prescribed some medication that will help me fall asleep and calm my anxiety a little bit. It has helped me a lot in the evenings. When we met with the psychologist at our last visit, she said I might be experiencing some night time depression. I feel like I am just a big mess in the evenings! But writing about it and talking it through has helped a lot. I am definitely ready to have this behind us.

I just want to thank you all again for your continued prayers. All of your sweet comments and emails have really helped me stay strong. My 1st surgery is on the 24th of October - a little over a week away. For now, I just want to get the house together and spend as much time with my family as possible. I might still be in the hospital during halloween, so this weekend we may try to find a pumpkin patch for Elise to see! I want to take lots of family pictures too. I'll be cuddling and snuggling that little girl as much as I can this week!

Saturday, October 1, 2011

Post 7: Oncologist Consultation

We received some good news from the oncologists Thursday. I will not be needing any chemo or radiation at this time! So relieved!! At Shands they have pow-wow sessions where all of the doctors meet and discuss patient cases. (3 Oncologists, 3 GI specialists, and 2 surgeons that I know of) This is amazing to me. I love how everyone knew everything about me before I even met them. I really can't say enough about how amazing Shands has been.
It was a long day and we met with a lot of people. Phillip and I met with 3 oncologists, a social worker, and a psychologist at the cancer center. Everyone was phenomenal and made me feel like I was in such good hands. They said during my endoscopic ultrasound the GI specialist got really great pictures of the tumor and they said it appears to be completely contained in my colon. It has moved to the muscular wall, however so we need to get this thing out soon. Luckily they did not see anything in my lymph nodes or in any other surrounding organs! They think surgery as soon as possible will do the trick and that radiation may be over doing it at the moment. However if any more cancer is found in surrounding areas during the first surgery, my procedures will go from 2 surgeries broken into 3 so I can have radiation if I need it.

This is my schedule at the moment:
October 12th - My Pre-Op appointment with my surgeon. Everything will be explained on how I have to prep for my 1st surgery.

October 24th - Surgery # 1: This will be a tough one. I will be in the hospital for 7-10 days depending on how I heal. I will have a total colectomy because of the tumor and because of my colitis. If I do not get my entire colon removed it's not a question of IF cancer will pop up somewhere else in my colon, but WHEN. Better to get it all taken out now so I never have to go through this again. During this surgery they will create the JPouch.

If they do see cancer elsewhere: they will wait to make the Jpouch, just do a colectomy and I will have to go through chemo and radiation then. (it would be split it in to 3 surgeries then)

If no additional cancer is found:  If all looks good my surgeon can make the pouch and I will be on my way to healing. While I heal I will have to wear a colostomy bag until my last surgery unfortunately.

I will have to be out of work for 6-8 weeks to heal from this first surgery. Hopefully I will heal faster and can be fairly normal before then. I will still be wearing the colostomy bag at this time.

After 3 months: (If all goes well)  Takedown surgery #2 . In the hospital for 3-5 days. I will have the colostomy bag removed (finally!) and then my small intestine can be hooked back up to the Jpouch that was made. It will be healed and ready to start functioning by then.  Hopefully this will be done sometime in February (if I do not have to have chemo)

6-8 weeks of healing time again for this surgery. Even though the surgery will be easier, this will be a tough time because I will have to learn how to eat foods again _get my plumbing moving so to speak. I will start with a liquid diet, move to soft foods, then eventually normal foods. It will be a lot of trial and error and I will be sick for quite a while until I can figure what foods will and will not work for me. The good thing is after the takedown surgery I will no longer have to wear a bag because of the pouch that was created using my small intestine. It is amazing how they can do this!

Over the next year my JPouch will continue to improve. Bowel movements may start out around 20 per day immediately after the surgery. (No fun at all) However, over the course of the year it will go down to 4-5 (I hear that is as good as it gets)

Meanwhile I am feeling great and doing well. Phillip, Elise and I are enjoying this gorgeous fall weather we are having right now. I am eating everything I want right now because I know in a couple of weeks I won't be able to! (We made chocolate cake the other day) I'm also doing a lot of things like riding my bike (my mom got Elise a little trailer to hook to the back of my bike) and enjoying working in the yard. I know I won't be able to do some of those things I love for a little while and I am just trying to enjoy myself  before I go in for surgery.