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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6 thoughts on “I Have a Voice (and an Audience!)

  1. Hi Lauren,
    Thank you for having the courage and dedication to share your story. My stepson, Tristan, is a survivor of Ewing’s Sarcoma. He was diagnosed at 17 months of age. He is now 9… almost 10. You are so right, not enough is known about cancer and especially Ewing’s Sarcoma. Thanks again for sharing and know there are many of out here rooting for you with prayers, warm thoughts and heartfelt gratitude for your courage and your voice.
    Katie

  2. Hi Lauren!

    It’s Mary from high school. I know we didn’t talk to much in high school. All I knew you from was when you came in the band room for Kevin or DeAngela. AND OF COURSE You were practically the most athletic girl in our year. 🙂 Keep up your positivity and stay strong. I hope to visit you soon once I’m off of my crutches! ❤

  3. Hi. My husband is a cancer survivor. 3 years this month. He still researches cancers cures and this is an article I would like to share with you. Please google Rene Caissec. . Interesting article.

  4. Lauren,
    You truly are an inspiration. My cousin suffered from the same cancer and just like you had the most powerful attitude. She was a firebolt of energy and to this day I wonder why she had to be the one to get sick. It came to me after she passed and gave birth to her son that she was needed elsewhere and her infectious personality was going to live on through her son. I miss her always and can only hope that you keep fighting and stay positive and always smile cancer can’t take that from you. My thoughts and prayers to you always . My daughter is a swimmer on our high school team and I know the type of personality it takes to better yourself and you can do it just always better yourself!!!! Stay strong

  5. You are amazing! I was just thinking this morning about how I would go about starting a nonprofit to benefit a 5 year old I know with cancer (she has had caner almost her whole life) and how I could spread the reach to others. You are very inspiring and beautiful.

    I am sure that you are doing everything possible and I wont give you any advice. Ill just drop one name, he isn’t an oncologist but he’s something, Dr. Paul Anderson ND Seattle WA.

    Love and Prayers

  6. Hi Lauren, I read your story on facebook. I have a friend , she cured herself if cancer twice. I urge you to reach out to her. She had a website , the healthy junkie and her name is Laura levesque page. She lives in napa California. She is also a life coach.

    If she is a usable she can be a great resource to you. Be strong, young lady. You can beat this thing . Also watch this video or utube show. It’s this gal who was an athlete and later a doctor and a mother, but over time she became paralyzed. But she changed her diet and was able to walk again. Her story will also give you hope . Utube “minding your mitochondria” terry walhs. She also does a series of. “Food for your brain”.
    Check these out, I’d be curious to see if it helps, changing out diet is often a big part of the whole.
    Lots of love,
    Maria

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