bad days, good days

3 weeks exactly since I had surgery and had all my girl parts ripped out, nearly 6 inches of my rectum removed, my rectum resectioned and my intestine pulled up, cut open and placed outside of my body. I hurt at least a little bit, all of the time. I try to remind myself to be patient and that it hasn't been very long but to be honest, I'm not doing great. For much of this whole cancer journey, I was able to live in various states of denial. I just wouldn't think about it. I haven't read any books about it and I avoid websites. I didn't want to wallow. I didn't want to cry. I wanted to be super woman and be super tough and just rise about it all. That is how faithful people face their trials. And I am a woman of faith.

But with how I am feeling now, sitting on a resectioned rectum and having to deal with my poop bag - every moment of every day there is a CONSTANT reminder that I have cancer. And it sucks. It just does. And I hate it. I hate cancer. I hate that I am having to live through this. I hate who it has made me become - it has exposed EVERY flaw, EVERY weakness, EVERY regretful, pathetic part of me. I don't want to be someone else, I just want to be me before I knew that I had cancer. I just want to not have this be happening to me. I started crying a few days ago, and I have cried every day since then. I hate that I am crying. I hate that I went to an appointment yesterday and when the doctor at the integrated center at MD asked me how I was doing, I totally broke down and started bawling. It's so embarrassing. She was relieved. "You have been abnormally ok with all of this. It is good that you are finally coming to terms with all of this." And then she referred me to a psychiatrist. HAHA. I've never been to a psychiatrist before! ugh. Stupid cancer.

Why am I crying? Well.... let's see. Because of the pain. Because of the fear. Because of this awful bag. I have felt ugly PLENTY of times in my life. There was a solid decade that I felt nothing but ugly and unattractive but I have never felt repulsive. Disgusting. I am disgusted with myself. I don't want to leave my house. I was terrified to go to church on Sunday. Cancer has slowly stripped away all of my safe havens, all of my treasured homes. I have to hide how I feel from the people I love because I just want to be tough and strong and not a burden. I don't want pity. I just want to be treated normally. I just want my life back. I'm so glad that I get to live, but I hate living like this. I just want all of this to be over. I want to be a year removed from all of this. It would be impossible to add up the costs of cancer. I don't mean financially, I mean in every other way.

Hopefully all this emotion is simply from the dramatic hormonal swings that my body has been experiencing since the hysterectomy. I started taking hormone replacements yesterday and I'm hoping that it will help me. I am fine, and maybe it is good that I am actually facing this all now. Denial was a lot less messy though! Ha.  

*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-

I wrote that on Wednesday. It is now Saturday. I started taking hormones on Tuesday. They have helped quite a bit. I'm emotionally stable now so that is always a bonus. When I wrote that stuff I had pink eye (what?! so random right?!) and I was just pretty much fed up with my body in every way possible. I had been having super sharp pain all day long and it got to the point late that night that I begged Matt to change my bag out because it was just hurting so much. When he took the bag off, the skin all around my stoma was red and super inflamed, which explained why I was hurting so much. You use your stomach for pretty much everything, so it's a bummer when even breathing or talking is painful. I'm not ashamed about what I wrote - I was having a painful, difficult, frustrating day - but I am not at that place anymore and for that I am grateful.

Can we back up and just talk for a second about the fact that my incredibly hot husband is so amazingly awesome that he will change my poop bag for me?! It's this tricky process that involves poop erupting out of me at any given moment, and for me to change out my bag myself would require some fancy maneuvering and some crossing of the fingers, since if the bag is placed off by even 1/8 of an inch we could have some pretty major problems. He is so SO great and doesn't ever act like it is the grossest thing in the whole world even though I know it is. He just rocks and I just had to throw that out there. I have started checking out all these ostomy support groups, looking for tricks and tips, and all these people go on there and talk about their significant other and how they are so grossed out by the bag and things have changed and it's just so sad. I'm such a lucky girl.

Anyway, so here is the plan. I met with my oncologist on Thursday and I will have 2 rounds of chemo followed by reversal surgery and that will be followed by 4 rounds of chemo. Each round is 3 weeks long. Day 1 of the round, I go to MD and I have an IV of chemotherapy. That day I also start taking the pills I took before, just a higher dosage. I take the pills for 14 days. Then I take a week off. Then I start another round. Because it's only 6 rounds - I don't have to have a port.

The reason for the chemo is because there is a chance that the cancer could have spread throughout my body through my blood. Thousands of cancer cells could be hanging out somewhere in my body, but it won't show up on any scan. Only millions of cancer cells show up. So the chemo is to kill anything left in my body so it doesn't have a chance to metastasize somewhere else. Most people don't die from their primary cancer, they die from secondary cancer. So we are trying to prevent that. I am optimistic that I will tolerate the chemo relatively well since we were able to figure out a good lil combination of treatments last time I was on chemo. I am nervous for the 'double chemo' and the various side effects that are possible. One of the main side effects is a loss of feeling and function in your hands and fingers. For instance, some people struggle with buttoning their blouse or other small tasks like that. These effects can last for years. I am worried about that because that will make it impossible for me to do lashes. That would be very sad for me so I'm hoping that I just won't have that side effect.

I am 3.5 weeks removed from surgery. I will have the ileostomy reversal surgery in about 6 weeks or so. So I'm 1/3 of the way done with this awful bag and I am so glad about that. I truly hate it. I hate having a constant reminder that I have cancer. Truly, before - I would forget. I would go hours sometimes and just forget about it then I would remember and be like, 'oh yeah! I have cancer! Weird!' But this bag changes that and it makes me grumpy. But I'm trying to rise above it and just be grateful for the fact that I'm still here, I'm still fighting, and somewhere, deep down, I'm still me.

An incredibly fantastic thing happened Thursday evening! My baby sister Karlie came home from her mission to Norway!!  This has been such a wonderful, happy time and has really lifted my spirits and helped me to focus on good, happy things. I was so excited - I started jumping up and down and screaming when I saw her coming down the hall at the airport! Probably not the best thing to do, 3 weeks post surgery, but I seriously could not contain my excitement!!

We all made these fun posters! I wish you could see them closer, they are actually pretty funny! 

Griffin, my 3 year old, pushed me in a wheelchair in the airport. It was weird to be in a wheelchair and have people stare at me but they were probably staring because he was so cute! 

So there it is. I have bad days. I had a few bad days, all in a row, and I couldn't shake it. Of course I have had down days during this whole ordeal, but I would have one bad day, and the next morning I would wake up and be fine. This time was different. I just couldn't see past my frustration and the pain was just getting to me. I am glad that whatever it was; the hormones, the package from a friend (Jodi - you rock!!), my sister Marissa flying in from Seattle, the knowledge that I only had to deal with this bag for 6 more weeks, the joy of my sister Karlie coming home - whatever it was out of all these things that helped me get out of the funk, I am grateful. I'm still going to see the psychiatrist, but hopefully now I won't just bawl through my whole appointment, hahaha! I'll tell ya how it goes :)