Peace Out Cisplatin

SEE YA NEVER!

This past Wednesday was my last dose of Cisplatin. While all chemo drugs suck, this is one sucks slightly more, especially when combined with the other chemo drug I get at the same time. It is the first of several lasts I have coming up, and I cannot wait. Currently, I feel okay. I have been sleeping A LOT and I know the side effects probably won't kick in till later this week. I am just really hoping the mouth pain stays at a minimum since it finally just went away from the last time. 

Last weekend, my mom and I were able to escape down to the beach with some of our good friends, just us girls. It was a lovely weekend and much needed. The weather was GORGEOUS! You probably could have tanned (no worries I was fully covered from head to toe). I did not put on a bathing suit this whole year (kind of a waste since I am the smalllest I have been in years...mostly kidding). I am hopeful next year will include many beach trips where I can actually tan! It felt so good to get away. I ate (despite the mouth pain) and even made it out on the beach! We weren't sure how it was going to work at first, but I was able to hobble down on the beach with my crutches. It felt so good to sit and get a change of scenery. I honestly felt like a whole different person there. When I wasn't looking in the mirror, I almost forgot what is currently happening.

I have a had a few of these moments lately where I cannot believe what has happened and what is happening. I see all the reminders, but I still can't believe I got cancer and have gone through what I have. Part of me is glad it is easy to forget because it will make it easier for this to all be a distant memory one day. I think back to last year at this time and think of all that I had coming. It works on the flip side too, that who knows what next year at this time will look like, but I am choosing not to focus what little energy I have on that!

I think one of the (many) reasons cancer is so scary is because we all want to believe bad stuff won't happen to us. It is so easy to see those stories on the news about tragic kidnappings or unfortunate accidents and think that we have some control over those things happening. Guess what...there is no control when it comes to cancer. It can and does happen to anyone. I don't say this to scare anyone, but seriously if I can get it anyone can. Sure some lifestyle choices have an affect, but not all the time. I know it must have been scary for my friends to find out their 20 year old friend got cancer. Doesn't cancer only happen to old people? I know when I see people in the stores that they are thankful it isn't them or their kid. I get that for a lot of people this is their worst nightmare and I am a reminder of that. Be thankful it isn't you...but don't forget that it could be. 

I know I never researched much into it. I never thought it would happen to me! I was 20 and healthy. I ate my fruits and veggies and quinoa. Nothing is going to change if everyone who isn't personally affected by it turns a blind eye. Sure, that is easier, but it isn't right. I am sorry it took this for me to realize how much work needs to be done in the world of cancer. Yes, there are aspects of cancer that are sad and hard to deal with, but there is also so much hope. And we need that hope for things to change. I'm not saying live in fear, but instead be proactive now just incase God forbid you find yourself in a similar situation. Shoulda, coulda, wouldas, are nice, but why wait till it gets to that point?

Anyway, sorry for my little rant. In other news, I can now walk up and down the stairs! Slowly and holding on, but I no longer have to sit. It is still tiring (chemo fatigue is real y'all) but more efficient! I also have slowly been using the crutches and walker less and less. It is easier for me to hobble around my house without them! When I go out I still use the crutches and probably will need to for the foreseeable future, but I am quite happy with the progress.

I switched out my drawers a few weeks ago so my fall stuff is accessible. Next time I have a burst of energy I seriously need to go through my closet! Anyway, not the point. I put away all my shorts and all I could think of is what life will hopefully look like when I take them out again next spring. I will remember the night I put them away while still limping around bald. It was a bit of a challenge getting stuff from the hall closet to my room and vice versa, but I was resourceful and did it alll without help!

In other exciting news, my mom and I bought tickets to see Amy Schumer in December. I am so excited and it will hopefully be a happy end-of-chemo gift to me! December sounds so far away, but hopefully it will go by fast. It is gonna (hopefully) be a big month!

Other than that, I am pretty much just resting and snuggling with Stanley. He has more than fulfilled his purpose of a cuddly dog! I am more tired than usual this round, but it is better than being nauseous. I have the rest of this week of and all of next week. I believe I will go to the hospital on the 10th (since I am on a Tuesday/Wednesday schedule now). That will repeat the following week and after that I will only have two more inpatient stays (one round but two consective weeks).

I cannot believe Halloween is this weekend! I haven't been home for Halloween in two years since I have been at school. I love handing out candy so hopefully I can make it downstairs to do that. We don't have any plans. We will dress Stanley up and take pictures and probably eat more candy then we give away! I am mostly counting down till Thanksgiving. That is my absoulte favorite holiday and I cannot wait to celebrate with my cousins. 

I think that is it from around here. I go to the doctor tomorrow for labs and just to check in. Other than that, not much to report (thankfully...I hope it stays that way). I wanted to write, but this post seems to be all over the place!! 

One last thing, my t-shirt campaign closes Sunday so if you want a shirt, don't forget!! The response has been amazing. I cannot thank you all enough for the sweet messages and for buying one! I have bracelets but we have yet to figure out the best way to distrubute them unless we see you in person! If anyone has any suggestions...I'm open! The link for t-shirts is: https://www.booster.com/strongandsassie129

Also, I created a Facebook page (which is what I should have done originally). I'll be posting on there instead of my personal FB from now on, so like it if you want to keep up!! 

https://www.facebook.com/strongandsassie

I will leave you with some pictures! No quote this time...couldn't find one that struck me! There's a first time for everything! I will have to do some research or read a book!

Just moments after my LAST EVER cisplatin infusion finished! I requested to be in a private room (sounds way more VIP than it is!) instead of the recliners this last round. I wish I had been doing that from the start! I get to lay in an actual bed and they have TVs in there. Never mind the fact that I am not stuck out in the main area with all the old people (no offense). I am there so long two days in a row, it was nice to have a bit of privacy! 

Yes out shirts match. Yes I know I may have gone too far BUT LOOK HOW CUTE?! He looks like a lifeguard at th beach in this shirt :).

It doesn't get better than the beach with great weather, snacks, and company! It was actully fairly crowded for October on the beach, this picture is misleading!

He is such a baby! And good news...he gained back his bed privledges! He has been able to sleep with me (since he seems to have stopped peeing on the bed)and it is absolute heaven!

It Is Always Something!

It has been quite a day over here!

If we have learned anything through this experience it is that things are 100% out of our control and that I personally do a good job of keeping things interesting! 

I had my routine three month ECHO today. I didn't stress and wasn't concerned at all. We sat waiting for longer than the actual ECHO takes, which is always annoying. Anyway, we get through the ECHO and the tech (I think the guy who does it is like a tech? I don't know his qualifications exactly, but he isn't a doctor) mentions that some measurement has dropped and it could indicate a potential problem. He says they may call and want me to meet with a cardiologist who may stick me on some type of medicine to prevent it from getting worse. All in all, no one seemed super concerned, so we left and went to Costco .

We finally make it in the doors of Costco (thank you wheelchair for making everything take 10x longer) and I get a call scheduling an appointment with a cardiologist. The scheduler who called me (who really should have kept her mouth shut now that I am looking back on it) says they need to delay chemo until I meet with the doctor. I, of course, get super upset that things are gonna be pushed back for who knows how long. In my head, I was preparing to hear that I would have to delay chemo a month. We make an appointment for Monday and try to move on with our shopping (also what is with Costco not having the sample stands??? There were only two today!). 

Luckily, I already had an appointment with Dr. B for this afternoon. We figured we would get some info from him and since he is the chemo guy, he would know what to do. Dr. B walks in the room and I think my mom and I were both a little on edge!! It was all good news though. I think the issue is called ejection fraction, which has nothing to do with my heart's function or structure (good news!). Anyway, my number dropped and is now 50% which is exactly borderline. Any lower and they stop the chemo drug (adromycin--I am sure that is  not spelled correctly) and any higher is totally normal. This stumped everyone! My doctor (who I trust 110%) ultimately decided to lower my dose of the drug for my rounds of chemo Monday and Tuesday. While not ideal, it is not a huge deal and is definitely better than not getting the drug at all! I will have another ECHO in 3 or so weeks just to moniter. I still probably will meet with the cardiologist at some point or he/she may just call in a medicine for me to take to prevent it from getting lower!! We really don't want that because as much as the drug sucks, it works! I only get it two more times after this week so it should all be good!

It is not a serious problem, as far as heart issues go. It looks like my nonexistent marathon career might be over (darn!), but I should still be good to walk around the mall :). The medicine (should I get on some) should be helpful and the problem has been known to reverse itself once treatment stops. So, while not ideal, it could have been a lot worse and we will just watch it!! 

In other news, I am STILL dealing with mouth sores. The actual sores are gone, but the soreness is real. It feels like super raw (I hate that word), kind of like how it would feel if braces tore up the inside of your mouth. It makes eating/drinking/brushing my teeth a challenge. I am seriously hoping it clears up before this next round of chemo causes them again! They are literally the worst thing I have ever experienced in my life. I actually wake up in the middle of the night in pain. I've tried all the mouthwashes and taking an Oxy before bed and NOTHING does anything. I would do anything for them to go away! 

Yesterday was probably one of the most miserable days I have had to date. Without going into much detail, I literally spent all day yesterday on the floor of the bathroom. No joke, I literally had a pillow and blanket and fell asleep several times throughout the day. It was not fun at all and I am super happy to be done with October 13, 2015! 

So, I will still get my outpatient chemos Monday and Tuesday. On the bright side, it is my last time getting both adramycin and cisplatin!! After this week, I will just get adramycin. This is good news because while both drugs suck, cisplatin causes a lot more of the bad side effects. Plus it is the one that drips for four hours, so my next times at the chemo clinic should be much shorter! 

In Stanley news, the poor thing sprained his ankle!! The other night my dad was taking him out for his nightly walk and all of a sudden he made the most pitiful noise I have ever heard. He started limping around so he went to the vet the next morning and it turns out it was a sprain! He gets some anti-inflammatory medicine once a day to help with pain. It hasn't stopped him at all! He still runs around and is jumping on and off everything! We should probably stop him, but it is next to impossible catch him! In the mean time Stanley and I are both hobbling around the house :). The vet also told us we need to watch his weight...he was 9lbs when we got him and now is around 12! Whoops!

My bracelets came in while I was at the hospital! They look so good so as soon as we figure out the best way to distrubute them, I will post! Also you can still order a t-shirt through this link! It closes November 1 so don't wait :) https://www.booster.com/strongandsassie129 

I have a fun weekend planned and then it is back to chemo on Monday and Tuesday. I am excited my aunt is coming into town next week! We always laugh and eat a lot so while I may not be eating much, I do plan on laughing!! 

I hope everyone has a good weekend...and even if it isn't the best, at least you (probably...I would hope) don't have mouth sores!! Eat some chips for me! Or oranges...which are my new craving which just seems cruel at this point!

Thank you for all the continued love and support! Quite a "journey" this cancer thing is!

Stanley and I spent some time outside the other day. He loves the sun! I sent this to my aunt and she asked where his large, fashionable sunglasses were! 

Just because he is so cute!

and a sneak peak of the bracelets (better pic and info to come!)

The 4 "S"s (Smells, Support, Surprises, Sores)

I don't really have a direction for this post, just sitting in the hospital bored (and avoiding schoolwork!), so I figured I would just write and see where it goes.

Nothing too exciting has been happening, which is really a good thing. I was in the hospital last Thursday-Sunday (I really think they messed up and could have let me go Saturday but oh well!!). I am hoping things go as smooth and quick this time! After this stay, I only have 4 more stays (2 more total rounds) which doesn't seem too bad. I have one of my favorite nurses this today, which helps tremendously. I love the majority of my nurses and will miss them when I no longer have to come. I also gained a pound over the last week so that was good news too! It may seem like nothing, but I was happy to see the scale go up, not down (things sure have changed!)I

On that note, I have spent A LOT of time thinking about the future. While I know I definitely have time, I am beginning to try to piece together what life will look like after this ends. I don't want to get too ahead of myself, so I am sure I will be writing more on this later. Everytime I see my doctor he goes "you're almost done!" or something along those lines. While super encouraging (I know not everyone gets to hear that) and true, December (praying things stay on schedule), seems far away to me when I think about what happens between now and then. I am on week 16 of 26 so time is moving...even if it isn't always as fast as I would like. 

This is going to sound total weird if you don't also do it, but does anyone else associate smells with things? I have always done this. Certain smells bring me straight back to a person or place or event. Growing up, my friends' houses always had their own "smell". Doing this is both good and bad. It is good when I am reminded of happy times or people I miss, but bad when it comes to this whole "journey". The smell of the chemo infusion room literally makes me nauseous. I pray I can forget the smell of the hospital. There is a certain plug in/air freshener that was in the bathroom at home that I will never, ever be able to use again. I have a particular "hospital deoderant" because the smel reminds me of the hospital too much to use anywhere else. For this reason, I haven't worn any of my good perfumes since treatment started. I LOVE perfume and have quite a collection, so this has been hard. Luckily, I don't go very many places, which helps ha! Anyway, this whole paragraph came about because I wore a nightgown the other night that I realized probably hadn't been washed since I last washed it in my apartment at school. I use Unstoppable scent beads (totally awesome invention if you like good smelling laundry!) and I am 99% these smelled of the ones I used at school. It really made me sad. Who would have thought the last time I put that nightgown away that I would be where I am now. I realize this will happen with lots of things I go to put on now. It caught me off guard and was not something I had considered. Sometimes it really is the little things!

On a happier note, I was surprised twice in the last week! Usually I am the person who plans the surprises, so it is nice to be on the other side! I also am very nosy so the few times people have tried to surprise me, I kind of knew! The first surprise was last Saturday when I finally got to meet a friend I had been e-mailing with who was diagnosed with breast cancer a month before I was diagnosed. While we are in totally different walks of life and had different diagnoses, she has been a great source of support for me as someone who "gets" it. She was up in Greenville this weekend visiting her mom (who my mom worked with last year) so they both came to the hospital to visit. It was SUCH a treat to be able to meet in person and talk! I can't wait till we get together again, hopefully somewhere other than the hospital! The second surprise happened yesterday. I knew 2 of my best friends were coming over, but what I didn't know was that one of them brought one of my closest friends at school back to Greenville with her!  I am sure most of you have seen the devastation in Columbia due to flooding. Thankfully my apartment is okay, but there were all kinds of water shortages and advisories, so everyone came home!  Anyway, it was such a great surprise to get to see my friends (especially the one I hadn't seen since last spring!). I never realize how much I miss hanging out with them until we get together! 

On a less happy note (this post is like a rollar coaster!), I have been suffering from mouth sores yet again, thank you methotrexate. It started as the usual soreness, but turned into actual sores we notices this morning. It is TERRIBLE! Seriously awful. I slept with a cold wash cloth on my lower lip last night. I debated including a picture to emphasize how GOD AWFUL these things are, but decided some of you may be reading this around dinner time. You're welcome. I have some things to help, but nothing lasts more than like 10 minutes. I am hoping they go away and do not come back after this next round. I want to eat and drink like a (semi) normal person!! I would rather be nauseous because at least there are meds and you can knock yourself out. This pain is constant and it hurts. It is the only time I have ever cried from being in pain and actually feel like I am suffering. Nothing good to say about this aspect at all.

Back on a lighter note, thank you SO SO SO MUCH for all the support with the t-shirts. Like I said before, I hate asking people for things, especially when I cannot do much in return. They will be for sale till November 1, so if you haven't grabbed yours yet you can click this link and do so (if you want...no pressure :) ). Here is the link: https://www.booster.com/strongandsassie129. For details, check out my last post! I am thinking it would be really cool to pick a day for everyone to wear them and post them using my hashtag (I really promise I am not a self-absorbed person). We will see what happens!! I cannot do much right now, but I promise one day to figure out how to thank everyone. I feel like thank you has lost its meaning, but please know how sincere it is. 

I think that covers everything floating through my head. It took me hours to write this post, so chemo is in and I should try to do some schoolwork. I am really tired though, so a nap may win out! 

I hope everyone has a wonderful weekend...and I hope I am out of here ASAP!

#SassieandStrong

I wrote this post over and over in my head last night when I couldn't fall asleep!

I have never been one that is good at asking for help or depending on people. One of the things I have learned over the last almost seven months is that people want to help, they just don't know how.

We are very lucky to have the health insurance we do, but cancer is expensive. The treatments, the surgeries, the medicines. We get a different bill in the mail everyday. I don't say this to pity you into buying a shirt (unless it works ;)), rather just to be honest.

Anyway, while avoiding my schoolwork here at the hospital, I came across this website that allows you to design a shirt and takes care of the all business for you. I designed a short sleeve t-shirt and a long sleeve t-shirt to provide some options. I personally LOVE long sleeve t-shirts and I feel like I never have the opportunity to buy them! Plus they will be good since cold weather should be coming...hopefully. The shirts will be for sale till November 1, then will ship out after that date. 

I don't people to feel obligated to purchase one, but I hope that if you do you will wear it in good health :). I got the front of the shirt from a play on the lyrics to Drag Me Down by One Direction (I know this will come as a surpise to many of you since I have never mentioned them before ;) ). Anyway, I feel like it is an inspiring message, even if you haven't experienced cancer yourself. Don't let anything drag you down. Life is full of good things that it is a waste of time to spend too much time on the bad stuff. 

The back #StrongandSassie is a good alliteration and my nickname! It started off within my family, but now many friends call me Sassie as well. The back also includes a ribbon, obviously for cancer. I used gray because I figured it was a good gender neutral color and the yellow is the color for Osteosarcoma. 

I also designed a silicone bracelet that I should get in a few weeks. It has the same two sayings, the band is pink, and the writing is yellow. As soon as they arrive, I will post those details! 

I sincerely thank everyone for all the love and support. Those things come in all forms, whether or not you buy a shirt, and I am truly blessed to be surrounded by so much of both. I promise once I am better, I will figure out a way to pay all this forward!

Here is a link to the shirts: https://www.booster.com/strongandsassie129. Here are the pictures of the shirts front and back. There are a wide range of sizes available.