I haven’t really been doing much since my last blog post, I have just been resting up because I am going to have a busy week next week! So tomorrow, I am going to be going to my grandma’s house in the Bay Area for our Early Christmas. We normally have our Early Christmas about a week from now, but with my schedule and the schedules of my other family members, this is the best possible day for our get together. Since our actual Christmas is full of driving from one relative’s house to another, we would be stretching out time too thin to spend any quality time with each family. This Early Christmas is at my grandma’s house on my mom’s side, where we have it every year. It has been a while since I have been to visit my grandma Leone and grandpa Joe, so that will be nice. I love looking at the pictures that they have on the walls that show my cousins, Mark, and I at many different stages of life. We always have to look at the village that is propped out in the backyard, named Riceville. I am sad that the jacuzzi that I had spent so much time in is now gone. That is where I got my nickname “Sashimi” which means raw fish. I would swim in the hot tub for so long and would basically be a fish. I guess that is partially where I got my love of being in the water and being a swimmer. Just the smell of chlorine is amazing!
And speaking of swimming, I plan on getting back in the water on my own on Monday. I NEED to get back in the pool. It has been months since I have fully emerged myself in the pool and I just miss it. I won’t be doing any soaking because of my tattoo, but I will get in for about twenty minutes and do some backstroke. My lungs are better than they have been in a long while, so that is no longer an issue with me getting active. I have nowhere near the lung capacity that I used to have and can inhale less than the average person, but that won’t stop me from swimming. I won’t push myself to exhaustion and won’t be timing myself anytime soon, but I need to exercise. Just being in the water puts me in a better mood, even though the weather leaves much to be desired. I figure that putting a few laps behind me will be good for both my physical and mental health- so what do I have to lose? I need to strengthen up my muscles a little bit because I have been sedentary for too long. My lower back ends up getting weak because I sit on the couch too much. Just yesterday I pulled my lower back and both of my hips by swinging myself out of bed. That was pretty much my wake up moment that I need to exercise again just to keep myself in decent shape. When I am active, I look and feel better, which is definitely why I have stuck with swimming for all of these years. I need to keep up my broad shoulders, keep my stomach tight, and keep my arms from being too “weenie”.
I just forgot that I will probably have to go in for a platelet transfusion on Monday, so depending on what time my appointment is, that will see if I am going to be able to swim or not. I can tell that my platelets are low because I am bruising and bleeding after my nighttime shot to get my immune system a boost. Speaking of my immune system, my counts are definitely low, as my white blood cell count was less than normal on Wednesday and I know it has not changed that much since then. This has also kept me inside to I can stay away from big groups of people because I really would rather not be sick. Out of everything that is going on, I do not need to get the flu or anything else that could get me in the hospital!
On Tuesday I am going to be on a radio program talking about my story and to further raise awareness for pediatric cancer. I will be speaking with Beth Ruyak of Capital Public Radio (90.9 FM, 90.5 FM, 91.3 FM, 88.1 FM) and I am looking forward to it! I also believe that my nurse practitioner, Tamara, will also be interviewed to speak from more of the medical perspective. It is perfect timing as she is moving to Oregon soon! I am finally getting the word out that childhood cancer is real and is closer to home than what most people wish it were. So I am hoping that this is only the start to a wildfire of pediatric cancer awareness!
On Wednesday, I will be interviewed for KCRA. So this will be my first television debut! I do not know the details behind it yet, but I have been in contact with someone from the news station. Exciting, isn’t it? This makes me so relieved that I do not have a fear of public speaking and that I kind of like to talk sometimes. This is also the perfect timing for being on the news because I am tapering off of my steroids. Why does this have anything with being on TV? Well, I was put on the steroids to see if it could help my heart and breathing two weeks ago. The steroids have given me the awful side effect of acne on my head and on the right side of my chest. Not my face, just my head and the right side of my chest. It is so bizarre! Luckily, since I am going down on the steroids, the acne has been clearing up nicely. It has made me upset because if I am going to be bald, I at least want a nice looking head. I don’t want to feel insecure when taking off a hat in public when my head gets too hot. So thank goodness with this timing and that my heart and lungs are strong enough so that I can be taken off of the steroids! Trust me, this acne was so bad that I thought it was hives at first. Yay that it is going away! I have dealt with having acne since I was probably twelve, so I think I have had enough of my skin tormenting me.
Speaking of Wednesday, that is also my birthday! I will finally be 21! Legal to drink! I will be buying and drinking a fruity cocktail on my birthday for sure. I will not be getting drunk, I can assure you on that! My stomach does not need to be upset by something that I am in control of. I will be spending the evening with friends and family and will be having a blast at a restaurant/bar. What I am more excited about is just having the possibility of ordering a drink that sounds like it will taste good. I like having the choice of ordering a drink and not having to worry about my age. I am mentally so much older than 21 that it never really occurs to me that I am still young. I am not going to abuse the fact that I will be able to buy alcohol- it will be nice just to be able to do it and bring it to a party.
On Friday, I will be going to the UFC weigh ins for the fights that will be going on in Sacramento on the 14th. One of the vice presidents of the UFC was made aware of my blog by his brother and read that I have been enjoying watching MMA. So he reached out to me and offered me VIP, floor seats for the UFC fight night on Saturday. Needless to say, I am stoked! I have never seen a fight live before and am so looking forward to it. I will be taking my buddy Job with me because he enjoys MMA as much as I do and he knows more about it than I do. He was just saying that we should go to a fight, and this opportunity jumped into my lap so I gladly accepted it. Right after my birthday, on a free day for me, how much better can it get? I will be seeing all of the fights, even though they will go late, I am just so interested in the different styles and how variable the matches can be. I also want to learn as much about it as I possibly can, I have a thirst for knowledge when it comes to certain subjects (including food). I already have a wrestling background behind me so I get a little bit of what is going on, but I want to know more. I wasn’t a very good wrestler, but I know a bit about it and have been around it for many years, so this will be a night that I will not forget!
I have been doing a lot of thinking, as usual, and I have to say that I have changed a lot over the past year, and even the past few months. When I was in high school, I was so OCD about planning and timing things and would get annoyed when people would try to make last minute plans with me. Now, that is what I rely on. Since my health can change at any time, the spontaneous moments work out the best for me. I often have to change my plans because my counts are low, my stomach acts up, or if I just am too drained. I feel like my friends don’t really understand (because you really cannot unless you are going through what I am) but they fully accept it. I wish that I could stick with my plans a whole lot more, but the reality is that I cannot, but I do as much as I can. I am grateful that I am able to follow through with the plans that I do make. At least with my friends, they know that it is nothing personal if I cannot hang out or go out. I think that is a key point in any sort of relationship, the trust that nothing is meant or done to purposefully hurt one another. When plans are broken, it isn’t personal, it is just that a situation has come up. So now when people call me up or text me asking to hang out or go out to dinner, whatever, last minute, if I am feeling good I accept. No day is given to us, nothing is promised, so I might as well live it up while I can!
Something that I have noticed lately is that people aren’t giving themselves enough credit. Sounds a little odd, but it is true. We are all so quick to point out our personal flaws that we often do not notice the good things about ourselves. Instead of thinking about all of the problems that you possess, think about all of the good traits that you have. Maybe your flaws are seen as positives by someone else. I know for a fact that I am brutally honest, for some that is a positive trait and for others it is seen as a negative one. I count it as positive because I think everyone needs a friend who can say, “Hey, that outfit looks awkward,” or “You seem to be gaining weight,” or even “You have a booger in your nose.” Because if I do not say anything, maybe my friend truly has not noticed and would be much more embarrassed if I were to stay silent. I figure it is better if I say something rather than for a stranger to say something. Maybe that is just me! If I seem fake and too smiley, too happy, that is because it makes me happy to think happy thoughts. That is a positive trait that I possess. I know friends who can make me smile and laugh during the hardest moments, that is such a great trait to have. Other people are such great listeners. Others are supportive no matter what. Just think about the positives that you have to offer in a relationship (whichever kind!) and don’t be as insecure. Different friends and different people possess different positive traits, so there is no “better” person. No replacement friends. I have multiple people who I consider “best friends” and they all are so different and fall into different categories that there is no ranking system. I have newer friends who have been there for me since I have met them, old friends who have been there forever, and so on. Those are my two cents for the evening!
So please continue on sharing this blog, keep spreading the word that childhood cancer is a huge issue that needs to be addressed, and keep being positive! I am terrible at answering my messages, so do not be offended if I do not answer or if I take forever, that is all too normal for me, again, its nothing personal!
Here are some organizations that I have looked into and support childhood cancer research and sorts!
And it makes me incredibly happy that http://www.marycrowley.org/ has a promising vaccine trial for Ewing’s that they will be starting soon! I am not eligible for the study, but I am very glad that something is being done!