Thursday, February 23, 2012
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.
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
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!
Deodorant. A sanity saver.
|This is what my brain felt like yesterday!|
Thursday, February 9, 2012
|Mommy & Elise (9 months) |
Feeling well during my 'off week
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.)
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!