Thursday, February 23, 2012

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.

Friday, February 17, 2012

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!

Thursday, February 9, 2012

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!