I don't feel brave. Or strong. Or whatever other adjectives people have used to describe me these past months. While I appreciate the compliments, truth is, if you had seen me last night or a few days ago you may not have said those things.
Quite frankly, what I do feel is tired. I feel tired of being tired. I feel tired of the mouth pain and the nausea. I feel tired of not being able to walk easily and the leg pain. I am tired of not being able to drive. I am tired of the hassle that is going up and down the stairs. I'm so tired of it all.
Last night was my first breakdown in awhile actually. My mouth pain just got so overwhelmingly (is that even a word?) awful and I broke down. I am either stuck in my room or downstairs on the couch, simply because I don't feel like putting the effort into the stairs. It is just hard. I am reallly struggling with why everyone else gets to be at school doing fun fall things while I am stuck here. It just isn't fair and it sucks, so I cried.
You know those people who say they wouldn't change how this went no matter how hard because of what it taught them? I call BS on those people. If someone had given me the choice of going through this or just not learning whatever I am supposed to be learning, I would not have picked this. I highly doubt next year at this time (when I pray this is all a distant memory), I will look back and be thankful for this experience. I will be thankful it will be done, but that's about it. Maybe I will feel differently, but currently I cannot imagine so.
Honestly, this past round of chemo was not too terrible in the scheme of chemo. I had what I would consider mild nausea and I can count on one hand the number of times I got sick. I don't know if my body is just used to it or if we did a good job of staying on my medicine, whatever it was, I am grateful.
I did spike a little fever on Thursday night. It got to 100.8 and we are supposed to call if it is over 100.4. I was so scared they were gonna send me to the hospital, but thankfully my second favorite doctor was on call and we were instructed to start me on the antibiotic we keep at home and reevaluate in the morning. It was kind of up and down Friday, but never got any higher, so thankfully I was able to stay home. Who knows what it was. My brother had had a fever a few days before with a stomach thing, so that could have been it (even though we stayed separated!). I was just extremely grateful to not have to go into the hospital.
The mouth pain is the worst. While I don't have actual sores this round, I do have EXTREMELY bad mouth pain. My throat, gums, and tongue hurt so bad. It of course makes eating a huge struggle, and forget brushing my teeth. It is complete misery. It is slowly getting better, but I need it to GO AWAY. It is so frustrating to want to eat and not be able to. I cannot put how awful it is into words.
I am really struggling with having to go through all this so many more times. I know I am extremely lucky that this will end when it does and is a lot less than some people go through, but it still sucks. I hate chemo. There has just got to be a better way. Someone please figure it out.
On another note kind of, September is National Childhood Cancer Awareness Month. I don't know how many of you have seen this, so I have to give it a shoutout here (should probably have its own post, but I am not feeling super inspired to write lately). Anyway, I am not pediatric, since I am over 18, but osteosarcoma is classified as a childhood cancer. Sarcoma in general is often the last to get research since it is so "rare" (BS if I can get it how "rare" is it?). Some of the facts are simply staggering.
-The American Cancer Society gives one cent of every dollar raised to pediatric cancer research. While they do great things for other cancers, what about kids?? I honestly believe that a cure for one cancer would lead to cures for all kinds of cancers.
-7 kids a day die from cancer. 36 are diagnosed everyday.
-In the past 20 years only 2 new drugs have been approved for use in kids, both dealing with Leukima. In 2012 alone, 23 were approved for adults.
-Some childhood cancers are terminal simply upon diagnosis.
(facts via unravelpediatriccancer.org via google)
I don't share these facts to make you sad, but something needs to change. To know that there are kids and babies who have suffered in the way I have or worse breaks my heart into pieces. Can you imagine not even getting to be a kid? That is just so wrong. Little kids don't even know how to form how they feel and probably don't have the mental capacity to understand what is happening. They need help too.
I feel like the young adult category is kind of brushed over in the cancer world. Not that there aren't great resources out there, but it is kind of an awkward spot to be in. I sit in the chemo infusion room and am the youngest person typically by a good 15-20 years. My ultimate dream would be to build a young adult outpatient treatment center. I imagine rooms with tvs, games, maybe even a coffee bar. I mean some people (like me) are there for 8 hours at a time. If I can figure out how to do this, I will.
So that's kind of an update from here. Just trying to eat and stay out of the dark hole I sometimes crawl into. I know many of you may be wondering if I have reached out to any of the resources available. The answer is no. One of my doctors gave my number to a girl who went through what I am going through a few months ago. She called me, but I never called her back. For some reason, I feel like I need to forge forward by myself. I am sure it would be helpful, and I am certainly not against ever reaching out, but I haven't been able to bring myself to yet.
I am typing this post on my iPad, which I ordered a keyboard for, so I honestly can't tell how long this post is, so I apologize if it is overly long. I also apologize for any typos...for some reason I am finding this keyboard extremely hard to type on.
I have PT tomorrow and I think next week then will be admitted to the hospital for Methotrexate I think next Thursday. I am on a Thursday/Friday schedule now, which kinda stinks, but I am so ready to be DONE I dont care when it happens.
I know this wasn't my most upbeat post, but such is reality sometimes. It is all still good, and I know that, but I still have my moments. I have never been one to rush time by, but if someone could knock mee out now till I finish, I would be a happy camper.
I hope you are all having lovely weeks! If nothing else One Direction released album info and a new song so that kind of made up for yesterday :).
No comments:
Post a Comment