I will start by saying that I was discharged from my week long stay in the hospital on Friday afternoon. I did not have any fevers and my pain was put under control to the point where I did not have to ask for my injection of delotted. Surprisingly, I was not bored at all with my hospital stay, so it was one of my better times in the hospital where I did not freak out and cry that I wanted to go home.
The numbness on my left side/hip area is still there. What alarms me is that it is also more swollen in that spot and there is a noticeable size difference between the right and left side. It looks like I have more of a womanly curve to my left side (not quite a love handle, but there is more of an hourglass shape on my funky side) while my right side looks like my normal, non-hippy self. I will be getting a CT scan to check out what is going on, because I think it might be serious. One of my doctors did not seemed too alarmed by it and kind of brushed it off, I don’t think it is something that should be put off to the side. So I will get one scheduled sometime next week, along with an echocardiogram to make sure that my heart is still going okay. Knowing how strong and in shape my heart is, it can handle working harder than the average heart. My resting heart rate is incredibly fast, so I guess I am starting to get used to that. I have always had a faster heartbeat than the average person, and now it is just personified by the pressure put on my heart. Again, thank you sports for making my whole body able to withstand so much more!
I would also like to report that my breathing is just fine! It stays within the 98% level and is not anywhere near dangerous. So at this point, my lung isn’t as big of a worry as my heart is or the weird thing on my side. If I am not worrying about not getting enough oxygen, then you should not either! I am on a higher dose of methadone and am taking some norcos on top of that, but every medication that I am on, the dose can be raised higher in case I get in more pain.
I guess I need to answer the question that is on everyone’s mind: am I going to beat this cancer? I can honestly say that I don’t believe I will be able to. Will I be able to stretch things out and prolong my life as long as possible? Yes. But in all honesty, it would take more than a miracle for me to be able to see my 22nd birthday. So that is in another year. I have not been given any specific time details, but I guess I do know my body best and unless there is a breakthrough in Ewing’s Sarcoma research very soon, I do not know if I will be able to receive that help that is so needed. This is tough for me to write, so I am sure it is tough for others to read. But I strive to give as much information as I know, whether the news is good or bad. People need to be aware of what is going on, no matter how much it hurts. None of this means that I am giving up, but I am being realistic. I will never stop fighting, it will just be a matter of the cancer taking over my body or not.
I may have been given incredibly unfair cards in life, but these are the ones that I have been dealt and these are the ones that I need to make the most of. I guess some people take a whole lifetime to not even make a dent on society. I am utilizing all of my time to make a huge difference in people’s lives. Maybe I do not need that whole lifetime to impact people, I sure would like one, but sometimes the ones who are here the least amount of time leave the biggest impression. If I can somehow stay positive throughout facing my mortality at such a young age, then I believe others should stay positive too. We are all given difficult cards in life, in one way or another, but we must survive and adapt to them. Part of adapting is taking change in stride and keeping a smile on your face. Since my life will most likely be cut very short, there is no reason for me to waste my time feeling bad. I am going to focus on things that I can accomplish and knock things off of my bucket list, which has not been updated in quite a while. I just take whatever opportunities are given to me and have fun. I am going to be trying different food and restaurants to broaden my palette, I know a lot about food but I have yet to taste many of the dishes that I have grown to love.
Okay, now I will go on with what happened during the rest of my time in the hospital!
I think I was not feeling very good on Tuesday so I asked for no visitors, I just watched TV all during that day. On Wednesday, one of my new friends, Sarah, came to visit me. We both share the same cancer, except she had hers in the lower arm and is now in remission. It was really nice to talk to someone who has gone through the same treatment and had the same cancer. It is a very unusual cancer for someone to have, so I got to tell her how it was like for me getting my “new normal” back and how much better college is than high school. We shared our woes about our high schools deciding to start supporting breast cancer awareness around campus rather than supporting our cancer. That was probably one of the biggest shockers that happened to me in 2011. Everyone at my school knew that I had been diagnosed with a rare cancer, and suddenly they decided to put up pink ribbons on campus and participating in breast cancer awareness month. Not childhood cancer awareness month. Which happens to be in September. The color is gold. This is probably one of my biggest pet peeves which I would have loved to speak to whomever was in charge of the decorations at either of our high schools. It is supposed to be about supporting the students and alumni right? I also got to try some Thai food for the first time on Wednesday. I sent my dad across the street to this good Thai place and got some duck curry soup. It was sooooo good! The place is called Ruen Thai. I highly recommend it if you are ever in the Roseville area.
Thanksgiving was a very long day for me, but it was a great day. I woke up decently early because I knew I would have guests coming in at around 9-10. Tyler and Troy from wrestling and swim came by and brought me a peppermint mocha frap, which was perfect! We all talked and got to catch up about school and what we all have been up to since we graduated. Not long after the boys arrived, Andrew’s friend from prayer group, Michelle, came by again. She brought me an iced chai tea, which was put in my cooler until I was done with the frap. Yeah, I was quite spoiled that day! I felt so good that my friends would take the time out of their Thanksgivings to come and see me, and I am pretty darn out of the way when I am inpatient. My mom, Mark, and Carl came by at around lunchtime with the food they had prepared at home. I ate the stuffing but much preferred the green bean casserole- yum! A few hours later, Egor, his mom, and Job came by to see me. Boy, was I happy to see them! I had just seen Egor when I went down to San Diego to get my badass tattoo, but I had not seen his mom or Job in quite a while. Thankfully, Job is back from his training month or so and is back in the area, it was so weird not having him here all the time! Egor’s mom brought some awesome Russian potstickers, aka pelmini, and a few others. I ended up eating all of the pelmini and my leftover curry for a later Thanksgiving dinner. I get hungry at night, so having these at my fingertips was perfect! We all got to hang out and catch up, have a lot of small talk, and just enjoy each other’s company for a while. After they left, I got to relax a little, and I knew that I still had other visitors coming to see me. At about 6pm (I think, everything is pretty relative in the hospital) Claire and Adam Pinson from my year round team came by. To my surprise, they brought my first ever year round coach, Coach Junior, with them. I was floored! And just a few minutes before I was pondering if I should send a text asking for just a quick visit from the siblings, but once they all arrived, my exhaustion was gone and I was pumped. Junior is the coach who pushed me to my absolute limit because he knew how strong I was. I used that to fuel myself during chemo and the tough treatments, as well as the rehabbing back into sports. I always felt that if I could survive the 3 hour long, Saturday of Hell Week practice, along with the hardcore summer training, that I could get through anything. He is the reason why I never cheated myself by hugging the wall and coming up with excuses to not swim and to take breaks. The thing about me was, that even though I did not go to the morning practices, when I did go to the afternoon practices or the Saturday practices, I gave them my all. This is my strategy for fighting cancer- give it all my effort and just attack it. Did I have panic attacks and freakouts during the hard sets of swim? Yes. I got kicked out of practice because I freaked myself out during a killer treadmill workout. I cried, and the next day I came back and was able to accomplish an even harder treadmill workout. That goes to show just how mental the swimming game is, as well as this cancer game. When you give anything your all, you get a better result. So Claire, Adam, and Coach Junior stayed for probably two hours because I was enjoying their company so much. I haven’t seen them in such a long time, and it felt good to be reunited with the teammates who I had worked so hard with. They put me in such a great mood despite the fact that some other close friends were supposed to come up but I ended up not hearing from them. So I definitely went to bed happy, getting my blood transfusions so that I would be able to get out without a problem on Friday.
So on Friday afternoon I got home, watched TV for about an hour, then decided that I was absolutely exhausted from waking up early for a whole week. By early, I mean any time from 6-8. And I also stayed up probably til midnight every night due to my late chemo start. That was quite an annoyance. So it finally caught up with me. I went to bed at around 3pm I would say, and stayed in bed until 1:30am. I kind of had a freakout and was crying to my mom. The truth is that I am terrified with what my future has in store and it really got to me. At around 3pm we both went back to bed. On Saturday, I got a visit from Egor and Job. Egor offered for me to come over for their Thanksgiving (yes, on a Saturday) but I decided it would be best to just relax at home and kind of feel everything out. I did just go through some really harsh chemo, so I think my body needs a bit of a break. But we got to hang out and catch up some more before Egor had to leave back to San Diego. Job stayed for a while longer and we just watched tv and funny videos, the normal for us! And discussing why people are the way that they are, it is all interesting stuff!
Today, my grandpa came over and hung out, I just lazed around because I am still recovering from everything! I ate some good food and leftovers, and I am glad that I have some leftovers to eat for tomorrow, I am pretty much the leftover queen. I took a nap, then I woke up and watched some tv, and then started writing again. I am a little distracted as I am watching UFC fighting, it is one of my guilty pleasures. What is really ironic and cool about the one I am watching, is that there is this guy from Sacramento in the final, and he fights on the same team as this fighter from my high school class. Talk about a small world! So go Chris Holdsworth!
I will post updates about my condition as they go, but for now I am stable, worried, but stable.
So these are some of the pictures that I took while in the hospital! Sometimes I forget certain details of what happens in the hospital, but at least pictures show what I was doing. As you can tell, my body was freakishly bloated on Thanksgiving thanks to the steroids and fluid combination. I am no longer bloated now, as you can tell by the last picture. That is just to show the difference in hip size! Weird, right?
I just read through your blog and HAD to write you! Your out look is awesome and I love how genuinely you are living your life! I was diagnosed with high grade osteosarcoma when I was 28… I am 39 now…my initial tumor was in my knee and tibia, had 2 lung mets, and 4 years ago a local recurrence which resulted in an above knee amputation.. Chemo sucks!! Pain sucks!! Fighting everyday of your life is overwhelming!! But you are doing the right thing in enjoying every minute that you are able to!! Much love to you!!
By the way love your tattoo :)!!