Thursday, January 29, 2015

A Cry A Day

This post is going to be shorter than my other ones.

Today I was on Instagram, a social media site used to post pictures, when I saw I had a post from someone. A good friend from my old school had sent a picture and a sweet message to me saying he was thinking about me and praying for me. I have known him since kindergarten and we used to be locker buddies. The picture and post made me cry, tears of joy. But it's nice to know that so many people care about me and are here for me. I've found that during these times you find out who your true friends are and I think I have some pretty great ones.

I really appreciate all the prayers from everyone.

Today I also found out that I am having a pulmonary function test before my biopsy and port procedures tomorrow. It is going to be a long, long day.

Remember, feel free to comment.

Wednesday, January 28, 2015

Still Scan Day

So I was supposed to have a PET scan today. Well that didn't go exactly as planned. I was all set up with an IV and I had already drank the oral contrast. I even endured an hour in a freezing cold room and was forced to watch Property Brothers with my dad. Then I was put on the scanning table and the contrast dye was put in my IV. The only problem was I am terrified of closed spaces! I started moving into the machine for the CT scan. Then they pulled me back out and repeated that a few times. But right before I was ready to go back in the machine, like way back, I had a panic attack. I started crying and shaking. The technician brought my parents in and discussed the different options. I could either finish the scan today, which was not happening, they could reschedule and give me medicine to calm and relax me, or they could do it under general anesthesia. I am all for the general anesthesia, but the doctors who rather not do that. So on Monday morning I am having the PET scan but I will be all drugged up, prescription of course.

This afternoon after my scan we went to Fuddruckers for lunch. I had a Southwestern burger, bacon, cheddar jack cheese and Guacamole. I topped it off with mayonnaise, pickles and jalapenos. And on the side I had sweet potatoes fries and an Oreo milkshake. I have to say after not eating all day it was a good meal. But after eating no carbs for three-four days it made me nauseous.

The worst part about this is that I'm angry at myself for not going through with it. I feel like a wimp because I couldn't do it. My dad told me he would feel the same way because if you've ever met my dad you know he is not small. He said that when he has these types of scans his shoulders touch the sides. That would freak me out even more.

Has this happened to anyone else? Feel free to comment.

I think I've become more cautious and more aware of things. This has kind of put things into perspective.

Again feel free to comment.

Scan Day

I figured now was as good as anytime to tell you the type of Hodgkin's lymphoma. I have NLPHL, a rare form that is most commonly found in 30-40 year old men. Yeah! when I do it, I do it. Only about 5% of people who are diagnosed with Hodgkin's have this type. There is a difference in the size and characteristics of the cells involved. In NLPHL, the cells resemble popcorn but classical Hodgkin's does not. Even though it's a rare type, it's still very curable.

Later today I'm going to have my first PET Scan. I'm a little nervous because as I said in my last post I am terrified of tight spaces. I'm also grumpy because I won't be eating until at least 3:30 this afternoon. I mean I've been on a no-carb diet for almost four days and now I can't anything. It really sucks! This morning I woke up to this wonderful aroma from the kitchen. I'm not sure what it was, but it smelled beautiful. The worst part was when I got downstairs my dad asked if I wanted any because he forgot I couldn't eat. I can't wait until this afternoon, I'm going to have a nice juicy burger with a roll and nice, crispy fries and maybe some ice cream.

This Friday I'm having a bone marrow biopsy and a port put in. For those of you who don't know what a port is, it is a disk that sits in the middle of my chest. It has a line that connects to a vein in my heart. That way they can give me chemo and draw blood whenever they need to without pricking me with a needle all the time. But if they find anything alarming in the PET scan than I will start chemo right after my surgical procedure on Friday. But if the scan is what they're expecting than I will start chemo next Wednesday. It will be 8 hours that day, than a few hours Thursday and Friday next week. Eight hours is like an eternity when you're sitting in the same chair doing nothing.
I'm hoping nothing unexpected comes up in the scan because I don't really want to stay any longer at the hospital than I have to.

Being in the hospital makes everything so much more real. It kind of scares me and stirs up my nerves.

But I'm still me.

Sunday, January 25, 2015

Another Day Another Thing Conquered

Yesterday I decided that I really hate the word cancer. Like I really really hate it. The feelings it brings with it are not pleasant by any means. But a good friend told me that I have to give it a name. Not just any name, an ugly name. I scrolled through lists on he Internet to find names. Some were pretty funny, others I never thought of being ugly names and some were names of my friends. The comments under the names were even funnier than the names themselves. But in the end I decided to give it a first and a last name, both equally ugly. I named it Mortimer Dorkus. Sorry to anyone who might be cursed with this name.

This morning I started a no carbohydrate diet. Trust me, it was not my idea because everything has carbs. I have to start this diet for the next few days because I'm getting a PET Scan on Wednesday. A PET scan is done to see if Mortimer Dorkus has spread anywhere else in my body. They inject a tracer of glucose into me. The reason I can't eat carbs is because in a PET scan, active cells eat up the glucose and light up. Which means my brain will light, well hopefully. But also Mortimer Dorkus will light up. I'm also not allowed to eat anything the morning of the scan which means I'm going to be one hungry person by the time the scans done. But the worst part about this is, I'm terribly afraid of tight spaces. When I was younger I had my first MRI in the hospital because I had a terrible headache. When they pulled me back into the scan, I literally screamed for my mom. It was very traumatizing. You know how they give you music to listen to? The one song I remember listening to was Battlefield by Jordin Sparks. I couldn't listen to that song for 3 years without bursting into tears. And the worst part of that was, it really is a good song. Needless to say, I've dreaded MRI's ever since then or anything really where I'm in a tunnel type thing.

Yesterday was the first time I actually broke down since I was diagnosed. I've felt that I have to be strong this whole time because anyone who knows me knows that I hate feeling weak. Being weak just isn't in my nature. And this diagnosis has made me feel weak, because there's nothing I can do. I realize there's some things in the world I can control. And to be honest, it just sucks! I also hate excepting other people's help. It makes me feel weak if I can't do it myself. I'm sure many people feel that way. But a good friend, the same friend from before actually, told me that I should except other people's help during this time. I may not need the help, but it will help the other people to feel like their doing something to help.

Yesterday I went to a thing at my old school. I was very skeptical about going at first because I know some of the people have heard that I have Mortimer Dorkus. People came up and hugged me. They said they'd keep me in their prayers and if my family needed anything they'd be happy to help. I hate when people ask if they can do anything. Sometimes I just want to scream in their faces, that there is nothing they can do because I can't even do anything. But instead I just say for now their prayers are enough. Then I pray they walk away or talk to my parents instead.

Tonight I'm going to my youth group for like the first time in a month. Most of the people know about my diagnosis. I don't want them to treat me any differently. I know that their probably going to pray for me and I will gladly except their prayers because I know prayers help. But I'm scared their going to like pray over me. I told my mom if that happens then I'm leaving. I know everyone means well. But it's different to pray for someone in like your private prayers than when it's said as an intention when said person is in the room. Am I the only who feels like this? I hope not because it seems reasonable.

Sorry for the long post, I just had a lot to say about the past few days.
I may have Mortimer Dorkus, but I'm still the say person I was last week or even a month ago. I just hope everyone realizes that.

Friday, January 23, 2015

The Week of My Diagnosis

Earlier this week my life changed in an instant. I was diagnosed with Hodgkin's lymphoma, a curable cancer in the lymphatic system. To say this was a shock is a huge understatement. At first I didn't know what to say or do, it may have been the first time I was ever speechless. But now I've sort of been in denial, like if I don't say it, it's not happening. And when I do tell people, I don't feel any connection to the words. I'm just going through the motions. People ask me what they can do and I don't know how to answer because it just doesn't feel real.

My biggest fear was how I would tell my friends and that they'd suddenly treat me differently. But I learned that you just have to come out and say it. I texted my best friend to see if we could talk, sooner rather than later. At that point, I'm pretty sure a million different scenarios went though her head, none of them what really happened. She replied asking why I couldn't just text it. I told her it was something that needed to be shared in person. So later that evening I showed up at her doorstep. I sat on the couch and told her mom she should stay in the general area. And I just said it. I also added I didn't want them to treat me differently. She and her mom jokingly replied, "Oh, were you expecting us to teat you nicely? Cause we're still going to be mean as ever."
Some of my other friends choked back tears when I told them. Others were at a loss of words like me.

I've found that writing how I feel has helped me cope with this news. It's easier for me to write things than say things sometimes, especially now.

I may have been diagnosed with Hodgkin's, but I'm still the same person I was a week ago.