Post 29: 4 1/2 months past surgery - and my first complication. An abscess

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 abscess in the surgery site since every symptom I described suggested that. Doctors kept telling me "you don't appear sick enough. You would look very sick and have a fever." 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 "appear sick?!" 
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.
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!!

My feet covered in painful blisters. Hand and Foot
syndrome at its worst from Chemotherapy (Xeloda)

I was then put on 2 antibiotics. Cipro and Flagyl. So I thought I was on my way to healing.

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.
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.

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 "Oh, yeah I knew someone who was diagnosed with colon cancer. She just went in for vomiting and she died a year later!" She went on and on 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 "does it feel like it was in my veins or did it feel like it was leaking into my skin." 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.

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.

Post 28: March is Colon Cancer Awareness Month

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.

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.

The most common symptom of colon cancer is having no symptom at all, which is why regular screening is critical. If you experience any of the following symptoms, speak to your doctor about scheduling a screening, especially if you have a personal or family history of cancer or colon polyps:

• A change in bowel habits such as diarrhea, constipation, or narrowing of the stool that lasts for more than a few days

• Rectal bleeding or blood in the stool
• Cramping or stomach pain
• Feeling bloated or full in the stomach
• Gas pains
• Weakness and fatigue
• Decreased appetite
• Vomiting
• Losing weight when you are not trying to

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.

People who are at risk are stereotypically obese and sedentary individuals, or people who smoke & eat a diet high in fat. However, this is NOT always the case!!! 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.
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. (To read about how I knew something wasn't right, read HERE about how we found my tumor.)

Don't ever ignore any symptoms that don't seem normal for you. 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!!!

For more information on Colon Cancer, and to find out if you are at risk and what to do to get screened:  Click HERE.

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: klappfamily@gmail.com. I would be more than happy to talk with you about any questions you might have.

Post 27: Ups and Downs. Healing the mind as well as the body

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 so guilty of it. People casually say, "Hi, how are you?" or ask if you need help. The response is usually, "Oh, I'm fine! I don't need anything, but thanks anyway!" 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.
The other day someone said to me, "Oh, you're just so strong and you are handling all of this so well!"  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 strong 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.

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 deserve 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.

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.

There will be days like that...... And they will pass.

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. "COME TALK TO ME ABOUT CANCER!"  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.

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.

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:  We need to stop comparing ourselves to others.

Some people say, "Oh, I know so-and-so 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!"  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,"That's great! Good for her!" But it used to make me feel so defeated. What's wrong with me? I go home and cry and can't get out of bed. But so-and so is such a trooper. Why can't I be more strong like that?? 
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.
I am pretty sure the answer is B.

No matter who you are, everyone 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. Everyone has a story. Everyone is smiling to cover a wound.





NEVER, EVER, EVER compare yourself to others and think, "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?" 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.


Oh, and good news. I am officially 1/2 way through my treatments! I completed my 14 day chemo cycle and did not get Hand & Food Syndrome this time!!! Yay! Three more rounds to go.

Post 26: CT scans, half way through round 3 of Chemo, & products I can't live without!

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.

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.

To help with my hand & foot syndrome I started using a moisturizer called Udderly Smooth. 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!



ReliaMed Lubricating
Deodorant. A sanity saver. 

 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 constantly moving. It has a mind of it's own and you have to empty the ostomy pouch when it gets full. Since you have zero control 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..... special. It can be absolutely humiliating 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 every single morning. 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 blue gel. When I first used it I wondered why is it blue!!?? 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.





This is what my brain felt like yesterday!



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.)

 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 very 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 immediately. 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!

Post 25: Goodbye to the stomach virus!

Mommy & Elise (9 months)
Feeling well during my 'off week

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.

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.

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.

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.

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.

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:

• December: 1st round 1500mg - TOO HIGH for me. I ended up with severe hand and foot syndrome on the 9th day (out of a 14 day cycle).
• January: Second round was altered to 1250 Still TOO HIGH - but I made it to day 12 (out of the 14 day cycle) before they pulled my meds.
• February: Third round will be lowered to 1000mg. Hopefully I will be able to complete my full 14 day cycle of Xeloda and this will be the right dose for me. (Update 2/23/12 : 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.) 

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.

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.

Thanks again for all of your thoughts and prayers.
Here are some pictures of Elise and Phillip on their way to the Father Daughter Dance!

Post 24: Stuck at home today...Chemotherapy update & week 12 post surgery

Well, I am lounging at home today & playing on Pinterest.

My hands with Hand & Foot Syndrome

Not exactly 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.

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. This link 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!

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.

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.

So far I feel like I have done fairly 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!

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 major side effects.
Below are a list of possible side effects 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.

Back, joint, or muscle pain - No
Constipation - No
Dizziness - occasionally
Eye irritation - occasionally
Headache - rare
Itchy or dry skin - Yes
Loss of appetite - Yes
Mild nausea - Occasionally
Vomiting - No
*Diarrhea - Yes -I eat absolutely no sugar or foods high in fat. I also control this with Imodium.
Stomach pain - occasionally
Taste changes - NO
*Tiredness - Yes
*Trouble sleeping - Yes
Upset stomach - Occasionally
*Weakness - Yes


SEVERE side effects 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)

Severe allergic reactions (rash; hives; itching; difficulty breathing) NO

Tightness in the chest NO

Swelling of the mouth, face, lips, or tongue NO

Black, tarry stools NO

Bloody diarrhea NO

Chest, jaw, or left arm pain NO

Decreased amount of urine NO

Discolored skin NO

Dry mouth or eyes YES

Fainting or blacking out YES (blacking out occasionally. No fainting.)

Fast or irregular heartbeat - occasionally

Fever higher than 100.5 degrees F - NO

Chills - YES

Sore throat - NO

Hair loss - NO thankfully, but it has changed texture and is very dry.

Increased thirst - NO

Leg pain or swelling - Occasionally

Moderate to severe nausea - NO

NO

Diarrhea - YES

Mood or mental changes (eg, depression) - Occasionally

Nail problems - YES Stopped growing, dry and brittle.
Numbness of an arm or leg - Occasionally
*Numbness, pain, tingling, blistering, swelling, or redness in the palms of the hands or soles of the feet (Hand & Foot Syndrome) YES
Pain, redness, swelling, or sores in the mouth or throat - Yes, sore gums (have to use very soft toothbrush)
Persistent cough or wheezing - NO
Shortness of breath - Occasionally
Sudden, severe headache or vomiting - NO
Swelling in the legs, ankles, or feet - YES
Unusual bleeding or bruising - NO
Unusual tiredness or weakness - YES
Vision changes - NO
Yellowing of the eyes or skin - NO

Elise at 9 months

Post 23: Starting chemo, week 10 post surgery

I 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.

I was an emotional mess.

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.

All was well up until about day 10. I unfortunately developed the Hand-Foot syndrome 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?....."