I Made it to See My 21st Birthday

So it has been a few days since I have posted because my days have been chock full of events! When you don’t hear from me for a while, that means that I am feeling really well and that I have been busy and there is nothing to worry about.

On Sunday, my family and I went to my grandma’s house for Early Christmas. That day is probably the only time of the year that I get to see my extended family because all of our schedules are different. I had such a good time there and was talking to relatives and opening our gifts, it was a fun day.

On Monday, I had to get a platelet transfusion because my counts were so low. I was taken with my dad and since platelet transfusions are notoriously short, we had enough time to hang out and get food afterwards. I had to go for my favorite sushi place, Crazy Sushi, in Elk Grove, to get my fix. I always get a baked roll that has scallops on it and it always makes my tummy very happy. We also got chips and salsa from Chevy’s which we ate all of in one night, I was a little sad because I was hoping for leftovers, but nope! I love leftovers more than anything, it makes my day just knowing that I have good food for me to eat later!

Tuesday I had my radio interview with Beth Ruyak for Capital Public Radio. It was an early start to my day as I woke up at 8am so I could be on the air at 9:30. I was pretty nervous because it was a live interview, but I knew I needed to get awareness out and this was a great opportunity to do so. I put on my makeup and a cute outfit because I figured that pictures would be taken, and they were. It took me a little bit to realize that the station is located on Sacramento State University campus. I found a parking spot and got my parking permit so I would not get a ticket, there is no way that I need to have that problem! I walked into the station and was led into a waiting room and met with a follower of my blog, Melanie. She brought me a peppermint mocha frappachino, which was delicious. We talked for a little bit before it was my turn to go on air. I got to chat with Beth Ruyak for a few minutes to get comfortable before we started the interview. She has a way with putting people at ease! She knew exactly what questions to ask and had comments that really fed the conversation. There was never a dull moment in the 15 minutes that we spent on the air. She was such a doll, very supportive and a positive person! I was so happy that she did her research before we talked so that her questions were inquisitive and well put. She mentioned Andrew Rundle and how he had passed away a few months ago due to Ewing’s Sarcoma. I got a bit emotional at that point, he made such an impact on my life and was such a great guy. He is the only person who I get emotional about and mostly the only cancer-related subject that gets to me. This proves how awful the disease is, more research needs to be done when it comes to childhood cancer. I know that other people at the studio who I met were emotional at my story, and I think getting the word out like I am is making cancer personal. You can put a face to cancer now and see what the life of a cancer patient is really like. We have our ups and downs, but that is our life and we cannot change it. So after the radio interview, I talked with Melanie for a while longer and we stayed long enough that lunch was being served in the studio so we had some awesome pork, couscous, cauliflower, and rolls. My tummy was very happy! I got to see a childhood friend of family from the baby sitting coop as he works for the studio and he shared some drinking stories. Once I left the studio, I headed on over to Arden Fair Mall to go shopping for outfits for the UFC fight and for Vegas, not to mention that I would be turning 21 the next day. I ended up finding the perfect dress to wear to the UFC fight as it would show off my scorpion tattoo- I feel like the event is the perfect place to show it off! I got some head accessories (note, not hair, but head) to wear for the winter and to look extra cute. I ended up getting some other things but I got quite some good exercise. I took four laps in the mall. I walked briskly the whole time and I had parked in the Macy’s upstairs. I always have to get my Cinnabon drink before I go, and it happens to be on the opposite side of the mall. So I walked back there and felt the burn! I also picked up a cinnamon roll for the next morning so my stomach would not be growling during my television interview. On my way back home from the mall I stopped by Walmart for groceries. I got so much food that I cannot wait to try! I got home and just sat for a while and then started cleaning the front room and my bedroom because KCRA would be coming to my house to record the interview. The house has not been this clean in a while! I spend most of my time in the front room on the couch so the table was pretty cluttered- I mean I basically do live on that couch. The only time I spend in my room is when I sleep and when I change my clothes, so to me it does not matter how clean it is or is not. Now it looks super nice at least! I watched the Victoria’s Secret fashion show on tv while wearing a facial mask that made my skin super soft. I really liked some of the outfits that the models were wearing and others were not to my liking. I was kind of surprised that some of the models did not have the womanly shape and were kind of boxy, like myself. I guess everyone has a different body shape, and although everyone on the show was skinny, they were different forms of skinny. I just thought that was interesting! I went to bed a while after that so I could try to get some rest for waking up for my interview in the morning.

I woke up at about 8:00am on Wednesday. KCRA told me that they would be stopping by around 9:30am to 10:00am and would take about thirty minutes of my time. Although the show will only air about one minute and thirty seconds of my story, they needed to get enough footage to get my story across and to be able to edit for the perfect video. The camera man and anchor were both really nice and made me feel at ease. It was nice to talk to them and get the word out about childhood cancer, as well as what I am going through and my perspectives on life. I am not sure exactly what time the interview will air, but it will be on KCRA tomorrow (Friday) in the morning. Which morning news show is beyond me. After the interview was over, I got hydrated so that I could go to get my blood drawn and have them find a vein. I was not prepared for my lab experience. I went to the Elk Grove Kaiser because it was close by, and that was a huge mistake. I normally go to Sacramento to get it drawn because I love my phlebotamists there and they do such a great job there. But no, I was being lazy and did not want to drive as far on my birthday so I drove the ten minutes to Elk Grove Kaiser. I let a student attempt to draw my labs and I really shouldn’t have. He missed the vein in my right arm near the elbow so I offered up my left hand. He proceeded to poke me twice more IN THE HAND and could not get a vein. I have big ‘ol veins in my hands so there is no excuse as to why he had to poke me more than once there. Then, he had an older lady try a big vein in my wrist and she missed it and was pushing it around and it hurt like no other. So she took it out and I started crying. I am not one to cry in public, but when I get frustrated I cry now. It was not about the pain, but I get upset over things that should go one way and go wrong. Tears just streamed down my face and although I was not sobbing or making any noise, I was visibly very emotional and unhappy. I mentioned that it was my birthday and I left with my red eyes from the crying. Luckily, I had made plans with Job to go to lunch and to get my first legal drink. He picked me up at my house probably two minutes after I got back from the hospital. We went to Red Robin as that is what I looked up and decided would be a good place to get a meal. I was put into a much better mood right away and the food helped! I got fried zucchini, a fisherman’s platter, and a grasshopper drink (aka basically an alcoholic mint chocolate chip milkshake) and Job got riblets and mac and cheese and a Blue Moon Beer Milkshake (which was surprisingly good considering that I hate beer and it more of resembled an orange creamcicle). We sat and talked and enjoyed our food for a long while and boy, did I need it after the horrible hospital experience. Job then dropped me off so we both could take naps to prepare for my bartending (YES!) that would happen later in the evening. So I got to rest for about two hours, and I got woken up by my case worker. She gave me the great news that I would not have to get my blood redrawn and that I would still be able to get my platelets without it. I was so relieved! I was going to go get my blood drawn before I would go bartending, but I did not have to do so.

I had to make another paragraph for my bartending adventure! I was given the opportunity to bartend at a restaurant/bar in Sacramento on my birthday! I had just turned 21 and I was about to experience something fantastic. The restaurant is Vallejo’s on O St. I had never been there before that night, and I can tell you I WILL be returning. I got to meet the owner and all of the staff as well as the bartender. They were all so welcoming and told me that I was now a part of their family. I was put immediately to work by Sonia, the bartender. She taught me how to make margaritas like a pro, pouring with both hands (two drink components) at once. I also learned how to pour a good beer (after a little trial and error) that did not have too much of a head. I also made some blueberry lemon drops and watermelon lemon drops, poured shots, made rum and cokes. It was such a cool experience! I learned really fast and learned the counts for the drinks, and I got to taste test the drinks. Oh, and I had some teachers from Laguna Creek High School come out to help me celebrate! I was so happy with my Laguna support! Someone bought a whole round of the blueberry lemon drop cocktails as shots and this bar regular wh0m I had just met made a toast for my birthday as we drank our bright blue shots. They tasted so good! I was proud of myself for learning so fast and getting things down, I mean I did spill a bit at first but I got the hang of it. I think it would have been a very good possibility that I would bartend if I were to be going to college. The owner of Vallejo’s promised me that we would do another fundraiser at the bar for childhood cancer. By the way, did I mention that Sonia let me keep all of the tips? I made $372 that we will be donating to St. Baldrick’s. I would love to do this event again and get the word out so that they will be even more busy and raise even more money next time! Oh, and the staff set up banners with my name on them as the guest bartender on them. Seriously! I felt so special and like I belonged there. All of the regulars were super nice to me and welcoming, one even gave me this absolutely adorable cupcake ornament! I made drinks for the babysitting coop, and boy there were a lot of them there to help me celebrate! They are basically family and I have known all of them for my whole life, so I was happy to see all of them. They always get together and drink and have a blast, so this was perfect! I was also nominated to make the drinks and be bartender for our babysitting coop Christmas party this year. I would love to do it! As much as drinking alcohol or even thinking about drinking alcohol makes my stomach upset (crazy, but yeah) I am fine with making drinks. It was so much fun for me to make the drinks and I now have a new skill that I can show off! My friends ended up coming about twenty minutes after I decided I was done bartending and was sitting down to eat. I was so happy that they all could hang out with me and help celebrate my 21st birthday. I met some new people who were incredibly nice and were gushing about how inspirational I am and whatnot, so that was interesting for me! My group of friends and I got to talk and hang out and goof around. At 10ish we left the restaurant, and while all of my other friends went to Job’s house to hang out afterwards, I was way too tired to go so I just went home. That was the best choice for me because I was seriously pooped! It was such a great 21st, especially considering that I did not think I would make it to see this birthday a few months ago. In June/July, when my prognosis was three weeks to three months to live, my end goal was to somehow make it to my twenty first birthday. I made it to my birthday and I now plan to make it to my 22nd birthday. I will fight with all I have, I have never given up hope. I mean, I had accepted the fact that I was going to die in June and July, but that has changed. I was doing so badly in the summer that I felt it was best to accept my fate (not happily) so that I could be at peace and not be angry for the rest of my days. Well, now I am just going to keep going and hoping for the best and fighting like no other. I do not think about the possibility of not making it, but I am still going to live every day like it is my last, because I really don’t know what each and every day has to offer me. Nothing is given to me and my health is so unpredictable, so I am living each day to the fullest and am doing everything to be happy. I am more vocal now (I am sure you can tell because of how I write in this blog) and do things that I enjoy. No time is wasted! I refuse to do that, I will spend my time with my family and friends. I need to get awareness out and spread my story and that is now my job. I am not working, swimming on a team, or going to school, so this is what I need to do. This is my passion, and if/when I do go back to school, I am going to change my major to journalism. I believe this is where I can accomplish the most and do the most good. The after effects of my treatment has made my hands incredibly shaky, so I could not be a nurse. There is no way that I could hit a vein well with being so shaky! So with journalism, I can get the word out about childhood cancer and really make a difference. I could work for some sort of childhood cancer organization or work somewhere in that field. I think it is a great plan for me!

So today I got two units of platelets because my counts are still really low. I am bruising like no other and bleeding very easily. Even with playing with Panda, I have kind of blood blisters (not blisters, but blood vessels are showing on the surface) which I would never normally get because Panda is so gentle when playing. He never broke the skin, but I have red marks where he put his claws or teeth on. Weird, right? I met up with Michelle (the one I met on Tuesday) and Katie Rundle (Andrew’s sister, whom I absolutely adore) to hang out with them for getting the platelets. I was surprised but happy to get the two units so I do not bruise as easily. I will also be needing a blood transfusion next week because I have been bleeding more easily with the low platelets. My hemoglobin dropped two points since Sunday, so I know I will be getting it next week. It was not low enough today to need one for tomorrow, so I am glad that I do not have to rush around! I also had a great idea right when Katie was leaving, since Beth Ruyak wants me to come back and talk on the radio again with an update in January, I figure that I can bring Katie to speak too, because she has another perspective on childhood cancer. She lost her brother to the same cancer that I have, and she is such a great advocate as to why we need more research done for childhood cancers of all sorts.

Tomorrow I will be attending the UFC fight weigh-ins with Job and I get to meet the fighters. I am so stoked for this, because I appreciate MMA so much. I know how hard they work and how beat up they get, I have mad respect for them. I have always wanted to do some sort of martial art, but I never got the opportunity. I was looking into Brazilian Ju-jitsu (I don’t know if I spelled that right or not) at the end of my senior year right before I graduated, but then I got diagnosed with Ewing’s Sarcoma for the first time. I never got the chance to do it, and with my lung issues and stuff now there is no way that I could, but I love watching the sport either way. I love the unpredictability of it and the different styles. It takes so much discipline to be really good at MMA that I would not have been great at it, it would have been more of for the experience. I will admit that I could not fight in it, I would just do the workouts and learn the moves, that would have been good enough for me. So with watching the fight (which is on Saturday, and I get floor seats with Job) I figure that I will be able to learn how to do certain moves and obviously never use them, but I love learning new moves that look cool and actually work. I am glad that I am going with Job because he appreciates MMA as much as I do and knows more about it and knows who the fighters are. Not to mention that I feel safe being with him and I know that no one would dare mess with me (they don’t as is, but it is nice having a little bit of security knowing I am with someone who can hold his own in a fight and defend me/himself). I am also going to get a behind the scenes tour of the weigh-ins. I cannot wait!

I am so thankful for all of the opportunities that I have been given and I cannot believe the amount of things that I have been able to accomplish at 21 years old. I have learned that sometimes I have to speak up and speak my mind. I never used to do this, but I figure that by saying something everyone around me is benefiting. When something bothers me, I let someone know. That way misunderstandings are aired up and feelings aren’t hurt anymore. I also apologize when I have done something to hurt someone and when I have said something that I did not mean, or if I give attitude for no reason. It happens to everyone! Apologizing and meaning it is such a big deal. It is so important to say “sorry” and actually mean it. I have had people apologize to me for things that happened way in the past and if I know they mean it, I accept it. That is how life should be, we all learn from our mistakes. Everyone has a misunderstanding or mis-communication at some point. I have had my fair share, and talking it out helps you understand what the other person is thinking and where they are coming from. These misunderstandings are often not a big deal at all! I am also more apt to accept an apology from someone who was not friends with me, because it is not like they back-stabbed me. If we were not friends to begin with, they really have not done anything wrong by talking about me. Sure, I don’t like it when someone talks bad about me, but it is way worse when a close friend does it. That is something I do not tolerate! At least with people who aren’t friends, there is no real harm done because they do not know your inner most thoughts and motivations. At least that is how I feel. I only apologize when I mean it and I know when someone else means it, so of course I accept the ones that are heartfelt. That is just the way to be, we need to be forgiving to those who deserve it. There is no reason to hold a grudge to someone who does not know you and who you do not know anything about. That is my thoughts for the night!

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So I have a bit of the steroid chubs going on right now! My face is a bit fatter than it normally is, but it is more swollen than anything because of the steroids. I wish that my cheekbones were more apparent but they will soon enough after the drugs have been completely tapered off. I also have a bit of a bulging tummy compared to what I normally have, but this is all temporary and is something that I can deal with. There is nothing I can do about it and I am just glad that I am not insanely skinny and on the opposite end of the spectrum. Also, with my one side being bigger than the other, I think it might be because my organs are off place now. Since my lung cannot fully expand, my diaphragm has moved up and my stomach has moved up. So my insides are a little out of place, but again, it is something I can deal with. I am so happy that it does not hurt, and although it is obvious that I am lopsided, no biggie. It is just another side effect of my treatments. It is survivable. I just have one side that has a womanly curve to it, a more hourglass shape on one side, and then my natural, boxy side. Just one of those weird things that happen in my life!

So if you want to listen to my radio interview, go to http://www.capradio.org/ and search for my name (Lauren McCullough) it will be under news or something I believe.

Also, here are some organizations to donate to for childhood cancer research!

http://www.stbaldricks.org/

http://www.stjude.org/stjude/

http://esarcoma.com/

http://www.sunbeamfoundation.org/cms/index.php

http://www.childrenscancer.org/

And of course, you can follow me on my social networking sites!

https://www.facebook.com/thenotdyinggirl

twitter: swimchickLM

instagram: swimchicklauren

email: shashimi1992@yahoo.com

Lazy Days

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!

https://www.facebook.com/thenotdyinggirl

twitter: swimchickLM

instagram: swimchicklauren

email: shashimi1992@yahoo.com

Here are some organizations that I have looked into and support childhood cancer research and sorts!

http://www.childrenscancer.org/

http://www.stjude.org/stjude/

http://www.stbaldricks.org/

http://esarcoma.com/

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!

 

 

 

I Have a Voice (and an Audience!)

All I can say is wow. My story was published across newspapers in the Bay Area and has been shared so many times that I have lost count. The sudden influx was huge! I have been getting tons of friend requests and messages, prayers and people who are wishing me well. I am so glad that I have so many on my side to support me through this journey and to raise awareness of childhood cancer. It DOES exist and is right here in front of everyone. I have had so many people supporting me, from Laguna Creek High School (where I went to school), Diablo Valley College (and the various sports teams, including my swim teammates), people who have stumbled across my blog, friends, family, people who I have come in contact with, and so many who I do not know. I have to thank everyone for being there for me throughout this hard process, and I wish I could get back to every single person, but that is pretty darn impossible. So I will thank you guys here!!!!

So on Monday I had my CT scan to check out what is going on with my swollen and numb left hip/side. Well, they did not see anything out of the ordinary. It is not a tumor (which I did figure because it is not painful at all). Nothing even showed up on the scan, so your guess is as good as mine is as to what it is. As my doctors and caregivers have always said, “You never know, it is Lauren!” This is so true of me. My body is so unpredictable and kind of marches to its own beat. I get problems that most people could not even imagine and have side effects that are unheard of, but my body keeps on ticking and chugging along. No matter how bad my health has gotten, my body has come through in the end and prevailed over whatever has ailed me. As much as my body hates me, it does work really hard. My side is still swollen and numb, but it has not gotten any bigger and is still not painful, so there is nothing to worry about. Again, no reason to worry about something that I cannot control. I would also like to report that it has been a full day since I have used my norco pills for pain. Before, it would be two in the morning and two in the evening. I did not use any last night, as I forgot to because the pain in my back is just not there anymore. So I decided that I would not take them this morning and have not needed them. This is such a relief to me! As much as my side has a weird sensation to it when walking and in general, it is not painful. I feel like I have a bit of a lean to me and that my body is out of balance, but no pain. I cannot complain! Monday was also my nurse practitioner’s last day. As sad as it is, she has a great opportunity for her in Oregon that just cannot be looked over. She has been so fantastic with my case and getting to know how I work, both physically and mentally. She will be missed, but she will do a great job in Oregon and will have those patients love her as well! So after my appointment, my mom and I picked up my Thai food and went home. I was so relieved to hear about the good news that my side is nothing to worry about at this point (and hopefully ever) that I was in a very good mood.

Yesterday I spent the day with my best friend Kevin. We have been neighbors and friends since kindergarten or first grade, I am not sure which one exactly. We have gone through our ups and downs, as do most friendships, but we are on a permanent high. We get each other and joke around about the weirdest things that most would judge us on. We can act like fools and sing in public and not care. Luckily, it was Kevin’s day off from work and school so we got to spend a good amount of time together. I decided that I wanted to explore this Vietnamese market/sandwich shop/ food place so it was just perfect that I would have company. I had done my research on the place, named Huong Lan, and looked at every single item that they showed on the menu. I was so intrigued, even though I had no idea what most of the food was, I could look at the pictures and tell that the food was going to be good. I picked out a Banh Mi sandwich- and going all out, I got one with headcheese, ham, and pate. Kevin got a chicken teriyaki sandwich and I got my mom a bbq pork banh mi. We also picked out numerous hot entrees that were already boxed up (they all looked so good), two Thai teas (which were surprisingly sweet), a few Vietnamese desserts, two boba teas, and a pastry filled with purple yam. You could say that Kevin and I were in food comas by the end of it, and I ended up having leftovers which I ate today. All of the food was so good and authentic, it was a culinary experience for me. It was definitely a bang-for-your-buck trip too, so you just cannot go wrong with that. So Kevin and I got to hang out and watch Jerry Springer, eat, and talk about feelings. 

So I guess I need to talk about what the talk about feelings was. It kind of got me thinking about the emotions that I feel on a daily basis and the ones that I do not allow myself to feel. We discussed love. Now, I have never been in love. This feeling is completely alien to me. However, I do know what love is. I have so much love for my friends, family, supporters, caregivers, pets. You could say that my heart is full of love. I think that more people need to own up to their warm and fuzzy feelings and show that they love people more. You may not have to say the words, “I love you,” but you need to act on them. It may not mean that much to one person, but sometimes hearing it or acknowledging the feeling makes the other person soar. Everyone likes to feel appreciated, so a little compliment or a “thanks” goes a long way in my book. I guess I am spoiled because I come from a family where we openly say, “I love you,” but my two cents are that people need to hear that word more often. Just saying!

So today I got my blood drawn and my counts are good, so nothing new is really going on right at this moment. It has been a pretty darn lazy day for me, and I could say that boring days are good days because that means that crazy things are not happening in my life at this moment. I am getting another echocardiogram tomorrow to check on my heart again. I can tell that my heart is going strong and that the gallop is not there, my heart is not racing for no reason. I am also going to be filling out some paperwork and getting my disability placard. I had one briefly in 2011 when my leg was bad, but it really does come in handy. On my days when my blood counts are really low and walking even two steps tires me, to the days where my lungs are not up to par, to when I am not feeling good, this will help me out. As my social worker put it, “Spend less effort doing hospital things so you can put more effort into the fun things.” So that is what I plan on doing!

So with my story becoming so public and getting so much attention, I have been asked, “What can I do to help?” Well, I have an answer to that! First, spread the awareness that childhood cancer exists and does not discriminate. Accept the uncomfortable fact that children get diagnosed with cancer. Tell others and discuss the problem that so many children (I will lump myself into this list) are losing years of their lives (and losing their battles) and live with lifelong problems after cancer treatment. 

Another thing that you can do is donate to organizations for childhood cancer research. This is the biggest gap in funding and where most of the work needs to be done. Here are a few organizations that I looked up and approve of:

http://ewings-sarcoma.org.uk/     This is specifically for my cancer.

http://www.stbaldricks.org/

http://www.stjude.org/

http://www.childrenscancer.org/

Just making pediatric cancer an issue that is spoken about is a huge issue. This way we can hopefully get politicians behind the cause and elect those who are working to fund the research! If the research is done and the funding is there, people like myself and children who are younger than I am can have a better chance at survival. That is what I ask!

Oh, and I have been getting a lot of “tips” from people regarding holistic medicine and other kinds of therapies that “cure cancer”. Chances are, I have done the research behind the tip and it is probably something that I have already heard of and looked up. I am very proactive in my diagnosis and ask a lot of questions. My team of doctors are also very proactive and are constantly looking into new treatments and protocols and studies. Trust me, I am not overlooking anything. Take into account the time that I have in my day to do the research and the fact that I am one of those people who fully looks into things. I am the girl who searches who my friends are dating and can find anything out about anyone. I am very thorough in my research and fully engross myself into my studies. I know that those who give me the tips and messages have great intentions, but it makes me feel like they think I am uneducated about my disease. Every cancer is different too. Different cancer reacts to different drugs and treatments. My cancer is incredibly rare and is considered as one of those cancers that you are very unlucky to get. What I mean is, if you were to be diagnosed with cancer, this is one that the treatment is very vigorous and the survival rate is very low. Ewing’s sarcoma is one hell of a cancer, and we need more research done so that the cancer does not get a chance to take more lives. 

So please help me and spread my story, my blog, and childhood cancer awareness!

I also ask for those who have been adding me on my personal facebook to please add my “The Not Dying Girl” facebook page instead, it makes things a whole lot easier for me.

https://www.facebook.com/thenotdyinggirl

twitter: swimchickLM

instagram: swimchicklauren

email: shashimi1992@yahoo.com

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Less Pain, More Worries

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.

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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?

Attack on Cancer!

As many of you know, I opted and qualified to go through yet another hard round of ICE chemo. I want to hurt my tumors and make them as mad as possible to make them shrink and to just die. I figure that with hardcore chemo, the tumors will hardly be having a vacation in my body. As sick as chemo makes me feel, I know that in the long run it is so worth the countless hours spent on the bathroom floor to keep my head near the toilet. No matter how tired chemo gets me or how draining it is on me both mentally and physically, the results are worth it. As long as these tumors are unhappy with me getting sick, then I can deal with it. The cancer cells aren’t supposed to be in me to begin with, so I think of them as an unwanted guest whom I am trying to kick out as quickly as possible.Cancer is NOT a part of me, it is a part of my daily existence but I will not acknowledge it as being a part of me.

On Saturday, November 23rd the Diablo Valley College lacrosse team held a benefit game against Santa Rosa Junior College in order to raise awareness for childhood cancer and of course, to back up their fellow Viking. I would like to start off by thanking everyone who participated in that because it truly moved me. All of these strangers were taking the time and energy out of their day (and Saturday night) to support me. I was in shock that this event could be all perfectly planned in just a few weeks. That kind of reminded me of the wedding, but this was even more impromptu so I was scared, but excited.

The whole Diablo Valley College football stadium was covered in yellow streamers, balloons, posters- all representing Sarcomas. The American Cancer Society was represented there too, as that is where all of the profit from the game would go to. I got kind of an overwhelming feeling inside, just in awe I guess you could say. All of these people were here to support me (and of course watch the lacrosse game) and I just felt an awesome sense of community that I have never felt before. When I arrived (a little late for my appointment with the photographer because Thor 2 had just came out and my swim buds Blake, Dom, and Steven took me there and to yummy sushi!) I was greeted by so many people who knew about me and my little situation, I felt like a celebrity. I met up with the photographer so I showed off my little bald head which had been concealed by a cute, wool hat. If I am supposed to be sharing awareness of what it is like for me (and possibly other young adults) to go cancer, then there was no reason for me to hide my head, even though it needs a tan. After taking some quick pictures with the Contra Costa Times photographer, I was whisked away to the middle of the field and in front of a microphone. I had a good feeling that I would be speaking ahead of time, so I had practiced what points I needed to get across rather than have notecards to read off of. I got introduced to the referees of the lacrosse game as well as all of the coaches on either side, then it was my turn for the floor. I said something along the lines that “Cancer does not discriminate based on age, race, social class, etc” and “if we talk about pediatric cancer more often, no matter how uncomfortable, that can lead to more funding to the research that needs to be done on childhood cancers of all sorts.” I also threw in a little joke about being bald and talked about my blog. I also told the audience why athletics are such an important part in my life and how I am sure that I would not be here today if I had not worked so hard in sports.

Once I was done talking, Terry Armstrong, the club adviser, kept me right near the microphone as one of the captains from Diablo Valley College spoke to me. His name is Devon Bahary and he presented me with words of encouragement, support, and gave me three different T-shirts as well as a framed picture of the whole lacrosse team. It was the sweetest thing, that all of these guys are supporting a fellow athlete who they did not know. Bahary was choking back tears when he was speaking to me, so I just felt the power of awareness and the power of being proud of your school. After the speech, I was escorted to the first part of the field where EVERY single lacrosse player, from both teams, introduced themselves to me. It was a lot of “Hi” and “thank you for being here” and “you are an inspiration” and other things along those lines. I would say “Hi” back, “thanks for having me”, and “aw thanks”. We all shook hands, the players in their dirtied up jerseys and baldy Lauren with the #1 DVC lacrosse jersey over a sweater, leggings, and boots. As much as I could just about taste how competitive these two teams were about each other, they all gathered together to meet me. At one point, I thought one of the players was going to give me a hug, and that was not his intention at first, until I said, “Aw I thought I was going to get a hug there for a second!” to which he, of course, turned back around to give me a hug. That was the start to the hug fest! Instead of just shaking hands with the lacrosse players, everyone who was still in line hugged me. That really made my day. They care so much about some girl who they have never met, only heard/read about.

The National Anthem was played live, and I believe right after that I went back to the middle of the field and I was named an honorary captain for the evening. I was stoked, as I have never been an “honorary”, “official”, or any other sort of captain position, even when I had earned it. The DVC lacrosse team decided that based on my effort and about how hard I am fighting this cancer off, that I could be a captain for this benefit game. To be honest, being considered a captain has been on my bucket list for a long while, and I can finally say that I got it. I got the captain spot, even if it was for one night. I did not have to do anything in particular when I was captain, other than shake the other captains’ hands (well I hugged them) and to call for a specific position if the coin landed on tails. It did not, so I just got to leave the field and watch the game.

I must say, I need to watch more lacrosse games! Being a former wrestler myself, I am so into the violent nature and talent needed for the game. For me, lacrosse looks like a mixture between soccer and water polo. The players can hit each other with their lacrosse sticks, run into each other, and just be aggressive. I was amazed by how fast everyone moved along with the fact that they had to carry their sticks with them everywhere they went as well. That game really got my adrenaline pumping, which is always really cool. While Diablo Valley College did win by around 10 points, it was still a great game. No one got too cocky and messed up the whole game, no one gave up- they were always checking each other and making sure that everyone was working hard no matter what the score was. I think that is how sports should be played.

During halftime, I was ushered up into the press box to do an interview. Of course I was game to do an interview, I mean I do have all the time in the world (in a sense) to think about what words I use and what to say. I have always loved debates and speeches, so I knew this would not be difficult because the conversation can never get boring as long as there are plenty of interview questions to rely on. I sat next to the announcer of the game and we shared a microphone that we handed back and forth between each other. We talked about athletics, about me having to deal with cancer, about being a top athlete with cancer, and other such things. I really believe I got the word out that pediatric cancer is here and affects everyone, and that word still needs to go even further. When I was done with the interview, I walked back downstairs and got to meet the DVC women’s basketball team and their coaches. I swear I still can’t get over how many students from different sports are supporting me, I guess being a college athlete automatically makes us all bonded together. We had the Music Industry Club played live (jazz) music during the halftime game (I did not really get to hear it as I was getting interviewed) and right before the 4th quarter commenced a dance team from our school performed. That was about it! The game was really entertaining, everyone was so generous and friendly, everything was perfect! There is nothing more that I could have wanted from the day.

So I am going to flash forward to me being in the hospital! I was admitted at 9AM on Monday to make sure that my chemo would not be starting too late. They were expecting me, so apparently the pharmacists were not put “in the know” to create my chemo, so instead of starting at 1PM, 3PM at the latest, I started at around 7PM. I have to get all of my premeds for chemo to help protect my organs and to make sure that I am hydrated enough to start the chemo. Trust me, I was ready. It was hectic in the 4th floor building for whatever reason, but I still had Coach Brenda and her daughter Emily stop by for an hour or so before they were off to the Roseville Galleria. I absolutely loved our talks, trust me our families have a lot in common and we are into the same sport, so that is an automatic plus whenever hanging out with someone. A little while after they left, my shoulder area- all the way to my elbow and neck hurt like crazy. I have a high pain tolerance and this was unbearable. My pain pills had not been changed from oral to intravenous and there was no order in for delotted (an IV pain med that actually works, also known as hydrocodone). So I had to sit very uncomfortably, icing my shoulder but to no relief. Finally I was given the order and was given my pain meds and was much better. I was really drugged up at that point because I did have a prescription ready for Ativan, I had needed something to help me possibly be in less pain. About thirty minutes after I got my pain medicine, Julie and Katie Rundle came by to say hi to me. I am so comfortable around them, so I did not care that they saw me feeling less than my best. They did not stay for too long, but Tamara and Shelly also stopped by to see how I was doing. They all brought me donuts and a Jamba Juice, so I guess you could say that I am a little bit spoiled.

So today, a family friend of Andrew’s, Michelle Bigelow, came to visit me and to just hang out. She gave me a pedicure while we watched Brave. It is really nice having people to talk to here in the hospital! I mean I love having my parents here, but sometimes I just need to have someone who is kinda new or who I haven’t heard from in a while. Maybe that is just me, but I love a little variety here and there. That way I can tell stories that I know I had not told them and have told other people.

With regards to my health, I am not sure exactly what is going on with me. I wish that I could give really good news, but I can’t. With my weird pain that suddenly attacked my shoulder (which has gone away) to the pain along my side, like right under my left lung. It is also numb, so I have a feeling that something with my nerves are not very happy with me. I can only hope that I can get the results that I want after these next two days of chemo. Put a pain on those tumors and make them leave me alone! I hate not having all of the answers that I strive so hard to find. I am very thankful that I am in the hospital so we can figure out exactly what is wrong with me, well hopefully we can figure it out. Oh, and I have hives on my head, only my head, not face or body, head. This would be from the steroids that I was on for about a week. Can’t wait until it is over!

Oh, and I turn 21 on December 11! So for my birthday weekend, my mom, Kathryn (who is a day younger than I am), her mom, and I are going to Vegas!!! I am not going to get drunk or anything because my stomach is just too sensitive now, however, I will take one shot and sip slowly on a fruity, sweet, drink. I am more into the whole experience of Vegas, mostly the food and the shows. I will be sporting a long, brightly covered wig (probably red or blue) just to add to the whole party element to it!

I will leave you guys now, so remember to have fun, do what makes yourself happy, be productive.

Lauren McCullough

shashimi1992@yahoo.com

IG: swimchicklauren

FB: laurenmccullough2

Twitter: swimchickLM

Strong Mind, Strong Body

I had an echo cardiogram today at 11:30 to check up on my heart after my disappointing and frankly unexpected news from last week. The radiologist popped in “The Princess Diaries” for my dad and I to watch as these tests go on for quite a while. An echo cardiogram takes at least thirty minutes, so I guess you could say I got to watch the movie with a good reason. I would say this test took about 40 minutes and we got through just a little bit of the movie because of the freakishly long commercials that came with the DVD. The pediatric cardiologist came in after I was pretty much done with the tests and he made sure that everything was conclusive, took a few more images and told me the news. While I still do have liquid on the left lateral side of my heart, which can only be seen through certain views, my heart is stable. I guess you could say that my heart is extremely strong because of all of the athletics I have participated in within the past many years and that it keeps ticking away faithfully no matter what life (or the poison that cancer is) throws at it. The cardiologist checked my pulse and heart rate to see if it was okay, and for me it was. My oncologist, Dr. Jolly, then came in to talk to me along with the cardiologist to discuss my future treatment options. He said that since I recovered so well from my last chemo session and that I showed enough of a reaction to it, that we could do more of the heavy ICE chemo. I was honestly very relieved to hear this, it was just the news that I was hoping to hear. I have done so well with chemo in the past and have handled all of the side effects in stride that I knew that I could deal with some more of it. I also did not want to have to lose my hair and be a baldy for just one measly, three day stint of chemo. I wanted it to make a difference and I did not want my hasty decision to start chemo a month ago to be one that I would regret. Thankfully, it was the right decision for myself to make. I know my body better than anyone else does, and responding so quickly with that first round of chemo was the right choice, so following up with more chemo is again the best choice for myself. As long as I can keep things at bay, I am okay with doing whatever treatment that it takes to keep myself relatively healthy, well healthy in my terms.

I have to say that I am so thankful that I have kept so athletic for the past few years and that my drive to win has crept into this fight for my life. Because of the hard practices that take both a physical and mental toll on me that I volunteer for, making the choice to continue on treatment was an easy choice for me. Giving up has never been an option for me. Even in the hardest practices that I have ever had- year round swimming, wrestling with Sac City, killer drylands- I have never given up. I will keep on going and not let that weakness get to me. I may have been the slowest practicer on my year round swim team, but I certainly worked hard. I would just keep swimming on, attempting to make intervals that were impossible for me. I guess it might also be an ego thing, but I have always refused to give into what my body wants to do (maybe once or twice). I have never understood those people who will just give up in the middle of a set and complain the whole time when they are on the team for a reason. They chose to be there and to spend their time in the practice, so why not make the most of it? It kind of reminds me of when a few friends and I wrestled with Sacramento City College in the pliometrics class during my senior year. I had not participated in high school wrestling that year and this was after the season and was actually during high school swim season. Every Tuesday and Thursday, my friends and I went to practice from around 6PM to 9PM to the wrestling class. This was after I had already gone to swim practice. I was amazed when the class first started because there were so many people trying to get into it. There might have been 100 people during the first day or so of class. After three weeks, it got so intense that I would say 30 or so people were left- all of them wrestlers. DeAngela and I were the only women left and I have to say, we kept up very nicely with the guys. We could do all of the workouts that the guys did and completed everything. I was only in the class because DeAngela needed a partner for the practice and I quickly volunteered because I knew that she could not rely on any other girls to be there consistently. 

Now, with all of the practice and pain that my body has had to deal with, chemo and whatever other treatments that I have to go through are a piece of cake. I have become mentally hardened after working out to my limit, and even past my limit. If you do not keep a clear head to get through whatever hardships you face, you will not get through them very smoothly. I may have my health scares, but I always manage to push through them. I always manage to get in a stable position even when it seems like my body has been through all that it can and that there is not too much hope for recovery. Just remember to keep a level head no matter what situation you are faced, be realistic but optimistic, and learn to cope no matter what life throws at you. You are always stronger than you think you are. My body consistently seems to get back up from the worst issues and I believe that being mentally fit is part of it. Strong mind, strong body. They both go hand in hand! I promise!

So tomorrow I am going to go up to the Bay Area to go to my grandparents because I have a busy Saturday coming up! My cousin will be in from SLO and this will be probably her last outing due to her being pregnant. I haven’t seen her in quite a while, so this is perfect timing. I also have quite a few swim teammates from Diablo Valley College who I cannot wait to see during the day. I haven’t been up there in maybe two months, it seems like forever. I then am going to go to a lacrosse cancer benefit game at DVC. It will be at 7PM on Saturday at DVC, with the proceeds going to the American Cancer Society. This game is partially being put on because of me, my school is really behind me in my fight against cancer. The programs for it have my name and I believe my blog on it, and it is going to be a perfect opportunity to spread awareness of childhood cancer! If more people knew about how this horrific disease does not discriminate for any reason, even age, then I know more people would get behind funding research for these awful diagnoses. With the research, more kids will be able to live onto adulthood and have full lives, as well as not having many of their years taken away by long treatments. So spread the awareness in any way possible, no matter how uncomfortable it makes people! It IS an uncomfortable subject, but sometimes those are the ones that need to be stressed the most.

Oh, and I am so excited to hang out with some other swim teammates after the game! I need to get my full weekend in so I can gush to all of my nurses about my adventures while I am in the hospital getting chemo.

So if you can make it out to Diablo Valley College (in Pleasant Hill, CA) then please go to the lacrosse game on Saturday at 7PM! Spread the awareness of childhood cancer!

Fun in the (Not) Sun

So as many of you know, I went to Santa Cruz yesterday to visit one of my best friends, Susette. I have not spent any time with her in a while because she lives far and has lots of school while I have had my unreliable health schedule.

I started on my way to Santa Cruz at about 8:30AM, a little later than I had planned on because my amazing cat decided that he was mad at me and peed on a pile of shirts in my room. I actually put on a shirt before I realized that it was not wet due to the fact that I had just taken a shower. I went to smell the wet patch on my shirt and was immediately regretting my decision to wear one of my favorite tank tops (I literally have probably 10 of them in different colors) and had to take it off and put it in the sink. I just closed my door and shunned Panda and he knew I was upset because he was sitting under the kitchen table and not trying to cuddle with me. I was lucky enough that there was absolutely no traffic on the way up to Santa Cruz and made it there in good time.

Susette and I had already planned on going to the Monterey Bay Aquarium because she wanted to take me to do something and not have a boring trip. I knew that we always make things fun no matter what, but I was so excited to go to the aquarium- I don’t recall ever going to this one. She knows how into animals that I am and it turns out that she could spend all day looking at the aquarium. We managed to go through it in like two hours, I guess you could say that I really go with a purpose and wanted to get through the whole aquarium. My favorite part was seeing the sea otters, they are so cute and playful, it was too bad that they moved so fast that I found it hard to get a good picture of them. Susette’s favorite part was seeing all of the jellyfish, they are really majestic and graceful, slow, just interesting creatures. I found it so cool that I could still name quite a few of the fish and animals even after all of this time and not having Animal Planet to watch all day, besides being in the hospital. I think another part of the fun of the aquarium was when Susette and I went outside to go look at the wildlife and saw this lady who was carrying a baby in a baby carrier hanging off her stomach. The baby was strapped into what made her look like a seal or an ugly, brown mermaid. I was laughing so hard, it was not cute at all, not to mention that it did not look like the most comfortable thing for the little kid to be carried in.

After our tour through the aquarium, Susette and I headed to Bubba Gumps for some lunch because it is very well known and I had never been. We got clam chowder (which was amazing!) and I got a burger with mashed potatoes and only managed to eat like two bites out of it because I am never hungry until later in the day. Susette was able to eat all of her food while I looked like one of the girls who only eats a small salad for lunch, which is not usual for me. At least she understood that I clearly was not trying to impress anyone by eating nothing, I actually prefer to show off by eating like a champ. I never managed to get my appetite quite back to what it was my senior year.

We drove back to Susette’s apartment and talked for maybe two hours about what we have been doing and life in general. It was so awesome to be able to vent but not complain to each other, and we kind of get each other. I was also glad that I was able to finally see her, as when I found out my bad news less than a week ago, she had literally packed her bags to come back to Sac to see me. Right before she would have left, I told her that I was going to go get my tattoo done so that I would not be in town if she were to come down, and we just managed to get a perfect schedule for once for us to see each other when we did not have any plans. Oh, and I FINALLY got to meet her boyfriend! We have always had conflicting schedules so I was not able to see him any other time. I have to say that I do approve of him, he is smart and really nice. I got to meet his roommates when Susette and I went over to his place and they were all cool, chill people who actually did not get on my nerves, even after a packed day full of walking. We ended up watching a horrible, horrible “scary” movie that was more about abuse than about anything supernatural, and that put a bad taste in our mouths so we put on “Sharknado”. It was so bad that everyone was critiquing it the whole time and we were laughing so much because of how cheesy it was. It had some parts of the movie that were totally unexpected, but most of it was so obvious that we could not help but joke around about it. That put us in such a better mood, and we got to leave happy. It was about 10PM when Susette and I left, because I was planning on going to DVC the next morning and she had to study and go to school later in the day. I did not end up going to DVC because I was just pooped and needed to get back home to relax. It was such a fun trip with Susette, we got to catch up and talk about anything and everything (even in the morning when I had just woken up) and we will be hanging out again very soon!

I got back to my house by 12PM, ate, watched a little bit of TV, and then took a nap at around 2PM until 5. That shows just how tired I really was, I mean I did have a packed day yesterday and I did a lot of driving.

I guess now I will get into some of the discussion part of my writing! So I would just like to say that I am very happy with my spirituality. Am I religious, no, but I do have my own thoughts about what happens after death and I like to pick and choose different things to believe in. I believe that everyone is entitled to believe in what they choose as long as it does not hurt anyone else. If you believe in God, Allah, Buddha, etc, ok. If not, ok. Nothing is going to convince anyone one way or the other. I guess what I love so much about religion and spirituality, is that it is so unknown and there is no proof one way or the other. I think that is one of life’s great mysteries that is one that should never be solved, people should have some sort of hope one way or another of what lies beyond. I DO appreciate it when people say that they pray for me, hope for me, wish for me, anything positive that kind of shows that they do care about me and think about me. I guess that is just my two cents on that subject that I had to get across, I know that everyone has differing opinions about this, but this is mine.

I think I need to discuss how I feel about my health a little bit. Many people are wondering how I am able to stay positive throughout all of the hardships that I have faced and that I am able to put a smile on my face even though I am facing my own mortality. Well, I guess for me it is pretty simple. There is no point in making myself a “victim”. That is not what I have ever been about. I do not want the negative connotation of complaining about everything that has gone wrong in my life when it will not solve a single thing. Complaining really does not get anyone far in life. It creates distance between people and makes a negative environment for everyone around. Seriously, I just cannot stand it when people complain about every single little thing that has not gone their way in life and it just drives me crazy. I have someone who constantly talks about “bitching out” hotel employees on a regular basis and other stuff life that, seriously, it gets old very fast and it just makes me wonder if they will realize that it creates tension that is not needed and if they will ever get banned from complaining so much and being rude. But enough with that ranting, I will talk more about myself! Being that complaining and thinking negative thoughts will not get me anywhere, there is no point in dwelling on things that I cannot control. Being sad all the time will not make me get better- I believe that a positive attitude really goes a long way. Feeling sorry for myself will not make my health problems go away or make it easier for myself, my friends, or my family. Going on and doing everything in my power to do whatever I want to make myself happy (within reason!) is the way to be. I am not going to be the depressed couch potato and waste away when I am feeling physically okay. I am going to have as many awesome experiences as I can and live it up. There really is no negative side effect to that, if I get better then I have so many experiences to recall upon and if not, then I still got to experience life to a degree that other people do not get. This is why I take every opportunity to do cool things that have been offered to me, or at least try to, given that I have the energy to do so.

If anyone is wondering if I am truly happy or if it is just a mask that I put on, I truly am happy. I guess part of it is the side of me that is so stubborn and not willing to give in to anything. Some of it has to do with not thinking about all of the bad things in life. I also find things to joke about on a daily basis. If I can make light of everything that is going wrong, then other people should not take it so hard themselves. Just focus on the good and roll with it. Take the bad things in stride, adapt. As much as I hate change, I have had to adapt to my life in various ways. I will continue to adapt and just go with the flow as much as I can, even with as stubborn as I am.

I will leave you guys with some pictures of my trip!

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Oh, and I will give you my contact information again, just in case anyone has any questions, concerns, comments, or whatever.

Lauren McCullough

email: shashimi1992@yahoo.com

facebook: LaurenMccullough2

instagram: swimchicklauren

vine: swimchicklauren

twitter: swimchickLM

Yeah, I know that I have a lot of different places to get a hold of me, some days I am better at talking and getting back to people, others I am a hermit. Just an FYI! And if you want to pick up a few of my business cards/ stickers (well, I guess they aren’t business cards but awareness cards) then just let me know!