Post 31: What NOT to say.

Last night I found myself in an ugly place. I was being mean to my husband. I was complaining about anything and everything. I ended up an emotional mess. I was angry. I couldn't put my finger exactly on what I was mad at, but I was just REALLY ANGRY. I think I was angry at my body. I was sick of the days being so difficult. I just wanted to feel normal. I was taking it all out on Phillip and then I realized I am being mean to the person who is my best friend, who takes care of me. The one who is there for me at my darkest moments. The person who loves me unconditionally even when I am mean and don't deserve to be loved. I then realized I was mad for another reason. I was angry with people. I wanted to write about a few things people say to me that just really upset me.

I recently started seeing a counselor about my anxiety issues I've been having this past year. I haven't found myself being plagued with fear about my health issues quite as much anymore - right now I am having more social anxiety and I've been avoiding people - which isn't like me. There are times when I have spotted someone I know at the grocery store and I literally run and hide in another isle because I am afraid I will be stuck at Publix talking about cancer for an hour. Since I've been going to counseling I have learned that I need to be more assertive and control where the conversation leads. So this blog entry was my little assignment from my counselor. Sometimes I wish I could be more outspoken and just tell people when they have hurt my feelings. But I just grin and bear it. I usually just nod my head while they run their mouth, tune them out, smile and take it because I don't want to make them feel uncomfortable for being an insensitive person. Then I go home and take it all out on my husband, cry and tell him what people have said to me. I know this doesn't make any sense. Unfortunately by me doing nothing about it, I am also teaching people that it's okay to treat me this way and that it's alright to say things that hurt me. In counseling I have also been learning different ways to change the conversation, or just simply walk away if someone is being ugly to me. I think they will eventually get the point that I am not going to talk about it anymore with them. 

 Let me be clear and say this post is not about everyone who asks me how I am, or lets me know they are thinking about me or praying for me. I am not speaking of the sweet people who cheer me on and come up to me and hug me and greet me with a smile and are genuinely concerned. I LOVE you all and am so grateful to have you in my life. So, I am speaking to the naysayers.... This post is for the people who feel this need to talk about death and suffering every time they see me and I end up comforting them. Those who think I wear a sign at the grocery store that says "talk to me abut cancer in public." Those who ask me how I am doing, not because they care, but because they are nosy and want the latest gossip. This post is for those who never smile at me anymore and come towards me with a sad face saying, "aaaaaawww :( Oh you poor thing...."  I don't want pity or for you to look at me like I am dying. I don't want to talk about how I remind you of someone you knew who suffered through chemo, or someone you know who fought cancer but died in the end. I DON'T WANT TO HEAR THESE STORIES. You would be surprised how often people do this. If you have said these types of things to me, I don't need you to come to me after reading this and apologize or tell me you feel bad. I don't care. I'm not going to make you feel better and say it was okay that you said those things to me. I am posting this in hopes that you will STOP and leave me alone, or at least think before you speak. You might be the nicest person in the world with all the best intentions. You might be concerned or don't know what to say. Maybe you feel like if you don't say anything at all I will think you don't care. Sometimes when a person is going through a difficult time, all they need is a hug and for you to tell them you are thinking of them / praying for them / love them. That's it. No profound words are needed. No stories of death are needed to make my situation seem "better." I would rather you just leave me alone if that is all you can think of when you see me. Just talk about the weather, ask about my family, talk about something that is going on in your life. Please stop talking to me about cancer and death. Instead celebrate with me, be happy for me that I am doing the best I can.

Another issue I am having is people telling me how "bad or sickly I look". At least once a day I get the sad face, then I hear I "look gray, or tired, I look weak, sickly, or my eyes look droopy." Yes, seriously people say this to me everyday. I get questions like, "are you okay? you look kind of grey and sick."  or "are you tired, you look like you don't feel good today." or "you're wasting away, you need to eat more". Of course I am tired. Of course I don't feel good. Would you like to eat when you feel sick? Chemo is no walk in the park. But I am TRYING and FIGHTING. When people say things like this to me it hurts my feelings so much and I am sick of hearing it. Would you normally insult a woman and tell her how bad she looks? Why is it okay to tell a person who you know is going through a rough time how bad they look? As women, we need to build each other up and support each other. Not say things that make us feel insecure or ugly.  

So I am done with trying to make you feel comfortable while your comments cause me to be in pain. To paint you a better picture of how much it hurts my feelings, this is what my morning is like before you say something like that to me:

At 6am I can barely get out of bed because I feel horrible. I spend 30 minutes trying to force down a piece of bread so I can take my chemo medicine so I won't throw up. I probably cried before I got dressed because my body hurts so badly and I am exhausted from not being able to sleep. I can't find anything to wear because I have lost so much weight from being sick. I can't take a hot shower because of my hand and foot syndrome and the blisters on my skin. Just thinking about getting ready has exhausted me and I just want to go lay back down. Instead, I wash my face, put on my makeup and try to pull myself together. I  put on a pretty dress so I can feel a little bit better about myself. I leave the house with hopes that if I look alright maybe people will treat me like I am a normal person and not treat me like I am sick. I psych myself up hoping it will be a good day and I feel pretty for a second in my dress. Then a person comes and basically tells me how crappy I look? Seriously?? This hurts my feelings so much. People might think it shows they are concerned, but really it's just a reminder to me how bad I actually feel. Please stop doing this to me. Just lie to me and tell me I look great. If I look bad, then don't say anything at all. I am doing the best I can and the last thing I need to worry about is being criticized for the way I look. I am in the fight of my life and I don't need to be told I look like crap.Yes, I am tired. What kind of question is that? Please be more sensitive and ask yourself if you would want someone to say that to you.

Naysayers, YOU WILL NO LONGER RUIN MY DAYS. 

Ok, I am done. And I have to say that felt pretty good :) 

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 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 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.