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


IG: swimchicklauren

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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!






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!

My Exciting and Jam-Packed visit to San Diego

So as of right now, I am watching A Clockwork Orange at 12AM. I have always wanted to watch the movie because it is a cult classic, but here I am writing my blog because I feel like I need to, I have the urge to write at this very moment. It is pretty funny because after my flight landed at around 6:30, I was extremely tired and wiped out. Now, I am full of energy and I have no reason as to why that is, but I guess I could talk about my weekend!

On Friday I was waiting, very impatiently, for the time to come for me to leave to the airport and get to San Diego. I was ignoring a few of the messages that I had because I was so nervous and excited to fly off to my mini getaway. Eventually, when I did get to my text messages, I found one from my old neighbor and family friend, Jennifer. She said that she and her daughter got me some stuff for my trip and that they wanted to stop by and see me. I was thrilled, I have known them for literally my whole life and grew up with them. I believe at one point or another they were my godparents too. So I texted back at about 3pm, leaving me two hours to hang out before I would have to pack up and shower (I am the queen of procrastination). I was drying my nails, which are now a lovely, bright shade of orange with white lines across them, and decided to let Jennifer and Molly come on over. I was so glad when they did arrive, I had not seen all of them since the wedding back in July I think. I did not get irritable at all during their visit and completely lost track of the horror movie that was on the TV- i was engrossed in the conversation. It was like a step back in time, but at the same time, we all got to see how grown we were and were able to have adult conversations and reminisce about childhood. When my mom got home, Jennifer realized that she had to leave soon as her mother was in town and she would be waiting to go to dinner. But she stayed for maybe another twenty minutes to catch up with my mom, as they are lifelong friends from the baby-sitting coop. All of the members of the baby-sitting coop, the parents and children, are like a family to me and I know they would move the world for me and that they are always there for me, if just in spirit. I guess you could say if someone ever really messed with me, they would be missing with pretty much a mob family. I am lucky enough that I did not have those problems, and I have to say that those who did not mess with me are lucky too! Now back to the Alexanders (Jennifer and Molly). Before they had to leave to tend to prior promises, I had to open the traveling gift. I found a Starbucks gift card, a Jamba Juice gift card, candies, chapstick, and other goodies that would come in handy for my trip.

My dad picked up my mom and I to go to the airport and we got through security and everything really smoothly. My dad does not have the same fascination with tattoos that I do, so I decided that it would be beneficial to the whole party that he would stay home. I knew he would not enjoy the whole experience as much as I would, although I believe he was excited for me to be knocking this off of my bucket list and that I had done more than my fair share of research for the trip. Now, some of you may be a little concerned about my getting a tattoo during treatment. I can quickly reassure you about all of your worries! I had good blood counts, including hemoglobin, platelets, and white blood cells- you could say I was pretty healthy in a sense. I also got clearance from one of my doctors because my counts were good. I also was going to be starting steroids anyways because it could possibly help with my fluid buildup in my body, so that would be beneficial for me. Just in case, I was prescribed antibiotics to give me the one-up on a possible infection. Now that everything is cleared up, I will continue with my journey!

My mom and I landed at the San Diego airport at a bit past 10pm. We picked up our luggage and our rental car and were off to our room in Embassy Suites. My mom got us a two-room hotel with two beds and a separate living room so she could get ready or go to breakfast without waking me up. How thoughtful (really)! I was hoping that I would have enough time to hang out with Egor that night (he is stationed a few miles away from the hotel) but I was too exhausted to stay up for a long time. So my mom and I went to bed and woke up at 9am so we could go downstairs and eat breakfast while it was still being served in the hotel.

After breakfast, my mom and I got ready for our long day out on the town. We picked up Egor at the Starbucks across from the base that he was stationed at and looked for a place to eat lunch. Since it was now 12pm, I was pretty darn hungry and I narrowed it down to a Mediterranean restaurant literally less than a mile away from where we were. Oh my goodness was the food amazing! I got a falafel appetizer for us to share because I have always wanted to try it. I thought it was good, so did my mom, but Egor was not a fan. I got a gyro combo plate, which was way too much for me to eat. It felt light and healthy and after we left we decided to head down to where the tattoo shop, Wylde Sydes, was located near Imperial Beach. Just to be sure that my phone had given me the right directions, we drove by it and then decided to go to a beach to hang out before my appointment. It was not a very warm weekend, so I was not too happy being on the beach with all of the trade winds and the cold breeze. We stayed on the beach for literally less than five minutes before I got cold and decided that it was time to go. We snapped a few pictures and went on our way. We stopped by Coronado go get some souvenirs and Christmas presents for my Grandma. We went inside a few shops and we were very impressed with what they had. I picked out a cute, sparkly shotglass for my soon-to-be 21st birthday. I also got a fabulous, fashionista, black lace scarf for myself and an umbrella with a cat print on it. Oh, and I got a nice business card holder for the business cards that I designed to get my blog more publicity. After we were done shopping for little knick-knacks, we stopped by to get some gelato to hold our stomachs over for what we knew was going to be a long tattoo session. 

My mom, Egor, and I arrived Wylde Sydes Tattoo shop a little after 4pm, because I had been notified by the shop owner that they were running a little late because the client before me had a tattoo that was taking a little bit more time than they had imagined. Just in case, my mom and I put on our emla cream (numbing cream) on the areas that were going to be tattooed. While waiting for the stuff to sink in and take effect (the other client was still getting his tattoo when this was happening) the shop owner and I looked for good scorpion design for my tattoo. We eventually decided on Bob, a scorpion that had great detail and positioning. Bob was originally brown, but with a little help from saturation and color-changing, we got him to the perfect shade for the black and grey tattoo. When we were done choosing my dream scorpion, we then waited for my mom’s tattoo artist, Jesus, to arrive. Once he did, we went straight to looking for examples of a heart-shaped locket and keys to go with them. We mixed and matched a few, and decided that instead of having a color tattoo, that black and white would look better. Jesus Sanchez is a master of intricate, detailed, and small tattoos, so he was perfect for doing the job for my mom. I would say it was about 6pm by the time my mom started getting her tattoo, as Jesus had to make a stencil for the tattoo and also let the stencil sit on the skin for a while to make sure that it would not wipe away with the excess ink from getting the tattoo done. You could tell by her wincing that she was in a bit of pain and I thought that she was just a big softy. I was just a little wrong about that.

Around 6:30, my artist, Jorge, finished with his other client’s tattoo. By then, my numbing cream was on for far too long, and I should have known better and taken it off after a while, but I didn’t because I was nervous about the pain. I guess my skin really absorbed it, as it was so hard to take off and I guess there was still extra on my skin, because after my stencil was put on and had set for about 15 minutes, it started coming off along with the excess ink. This made me extremely nervous. Jorge knew that he could not keep tattooing like that and that we had to start fresh. After liberal wiping and cleaning of my back/shoulder area, we managed to get all of the stencil off along with my numbing cream. Poor Jorge had to draw the stencil AGAIN, and the original was so ornate and perfect, but of course the second one was just as clean and well-placed. So we started again after being sure that the stencil would stay on (we did not need to make the job harder than it already was!) and he got straight to work. I must say, getting a tattoo smarts. It is different than the pain that I am so used to, I am used to a dull and very strong pain that is deep, but this is more like a wound that keeps getting irritated in the same spot, over and over again. Like rubbing dirt in an exposed spot, so you could say it is not something that I relished the feeling of.

 My mom got to chat with her tattoo artist and sit in the chair and watch the TV, as well as her tattoo being drawn on her skin. I also got to watch that for a bit as we were dealing with the complications of my tattoo, well more of the complications of my skin (I have said way too many times that my body hates me!). Egor also got to hang out and watch my mom get tattooed, as well as talking on the phone to his girlfriend, Aiyanna, his mom, and his dad. I have to say, there was something in his smile when he was talking to Aiyanna that made me very happy for him. It was a kind of glow, it was the sweetest thing! Anyways, enough gushing about that.. hehe.. My mom’s tattoo took around two hours I would say, which was more time than I had expected, but there was so much detail put into it to be sure that it was a fantastic work of art, not just a jailhouse tattoo. 

I, unfortunately, had to sit kind of hugging the chair that I would be tattooed in due to the location of my tattoo. There was no way that I could sit normally, I had to keep my back exposed and I was aware of that. I would say I was doing extremely well for the first two or so hours, then my anxiety got a little bit bad and I had to take an Ativan to kind of calm it down. I get so worked up when I have planned things and put so much time and thought into doing something. I assure you, I should have not been nervous, because I knew that my tattoo would be fantastic (and it is!). I also took some pain pills that would not make my blood thin, it also helped to calm me down and keep me nice and relaxed. I was given a pillow to rest on as I got the rest of my tattoo done. My mom was finished by the time I was halfway through my four and a half hour long tattoo. I got to see the fantastic work, the lines were clean, there was so much detail, and her locket and keys looked so real. I knew I had picked out the right shop for the job.

So, yes, I did travel all the way to San Diego from Sacramento because I knew that this shop was the right fit for me. There are plenty of good tattoo shops here in Sac, but I knew that Wylde Sydes specialized in black and white and portrait style tattoos. I feel like in Sac there are more new school and traditional tattoos being done. I had to go to a shop that specialized in what I wanted in order to keep myself mentally sound. I always do a lot of research into things that I do, and it does not help that I have so much time to commit to my research. The owner of the shop knew that I had come all the way from Sacramento to get my tattoo done by that particular shop, and I have to say it was neat to see the surprise on the faces of the artists when they heard that I had actually done my research and had chosen their shop to create my dream ink. The shop was a lot more warm than the other ones that I have been to in the past, whether I had been with friends who were getting tattoos, friends looking at getting tattoos done, or at one of my few piercing shops. There was a board flashing (well not flashing, but nicely brightening up and changing colors) the piercings that they do and the costs of them, I was very allured by this. I loved the bright and beautiful colors, and I kind of felt comfortable. There were so many different colors of jewelry and kinds of jewelry that I could be looking all day and never get bored. Everyone was so professional that I knew I had done the right job in choosing this shop for my tattoo (and my mother’s). I honestly would not be gushing about this shop if they had not done a good job, and I have to get the word out that the place does amazing works of art. Ok, now back to my tattoo experience.

When my mom was done, she sat down next to me to kind of comfort me while I was getting the tattoo done. Luckily, I chose a spot that was not near any of my sensitive spots due to tumors. I was so thankful! Egor was extremely tired and was pretty much falling asleep because he only got four hours of sleep the night before. After a long time convincing him that it was okay for him to take a nap (and we had the tattoo chair that my mom was not occupying anymore for him to sleep) and he finally knocked out. What I thought was really cool was the fact that my tattoo artist, Jorge (or George, not exactly sure!), just happened to be a fan of scorpions as well. He even had a tattoo gun that he used that was shaped like a scorpion. You could say he was incredibly invested in my tattoo and connected with it, so I knew it was the perfect fit! He made sure that every single detail, every hair, of the scorpion was done well. While it did hurt really badly, I knew that the tattoo would look so great that I could manage to get through it. I was having a tough time by the end of the appointment, especially because I had been out and about all day and it WAS 12 in the morning. Yeah, they stayed open super late to get my tattoo done. By this time, the white ink was about to be put into my skin. I already knew that this would be the most painful part of the whole tattoo experience (I watch a lot of tattoo shows and read about them constantly, researching) because the white would be added to the areas that had already gotten the black/grey ink in it. Finally, at 12:30AM, my tattoo was finished. I was so relieved, and even more so when I got to see the finished work. Oh, my goodness, was I impressed! It was just what I was hoping for, I mean my skin was quite red, but I could tell all of the details that had been put into it. Four and a half hours spent on that tattoo, and it was so worth it. Egor was awake by now, and we were all taking pictures of the work. We were all so happy that my mom and I got the tattoos that we had planned on and wanting, the pain was lessened by the relief of getting this bucket list bullet off of my list! By the end of the whole session, we had gotten pretty acquainted with each other and had bonded through the experience. We ended our long visit with hugs and were off. Oh, and I forgot to mention, but I gave the owner of the shop one of my business cards so he could read my blog and hopefully spread the word about childhood cancer awareness, because he does get a lot of traffic through facebook. He ended up looking at my blog and pulling it up on the internet and then put my business card on a blackboard on the wall of his tattoo shop.

My mom, Egor, and I left the shop at 12:30am. My mom and I were extremely hungry, so we stopped by a burger fast food restaurant named Rally’s. Egor was driving because my mom and I were pretty darn tired after all of the tattooing! My mom got a nice, double cheeseburger. Egor got fries. I got mozzarella sticks and a bacon cheeseburger. Mom ate her burger on the way home, while Egor and I waited to get back to the hotel. I was so happy to get back to the hotel so I could finally eat. Egor and I had planned on staying up late and catching up and talking, but it was past 1am by the time we had arrived at the hotel, so we just ate, talked for maybe 10 minutes (unfortunately, some of it I did cry while thinking about my disease, and Egor simply hates when I bring it up) before I went back into the room with the bed (remember, the hotel room itself had two separate rooms, one with two beds and the other was a living room with a futon, where Egor slept). By the time my mom woke up and went to get me up (which as about 9am) she noticed that Egor was not in his room. She was not even sure if he had slept there or not, but I assured her that she did because he was falling asleep while I was eating my burger (I was eating incredibly slowly, probably due to the pain pills and Ativan that I had taken earlier). So I simply checked my phone, and saw that Egor had texted me apologizing for leaving early and not saying goodbye. I reassured him that it was no big deal and that he had to be at duty, and that I was relieved that he did not wake my mom and I up. My mom and I decided that we were not exactly hungry for breakfast and that we were so exhausted from the busy day we had yesterday, that we went back to bed. She woke up at about 11am and got ready and packed up to leave. She woke me up at 12:30pm (yes, I was that tired) and I took a shower, packed, and we left by 1pm. We got our rented car back from the hotel valet service and headed to a crepe place (Fabrison’s French Creperie Cafe) because I was craving crepes, which I found that I tend to crave when I am on vacation. I was so happy with my choice of a restaurant because the crepe I had was delicious. I got a lemon sugar crepe and a hot chocolate while my mom got a Baja crepe. She was equally pleased with her food. So when we finished, we got back to the car, which was a fair walk away, and while on the way to the car, we got to go through Little Italy and enjoy the sunshine. Then we filled up the car and took it back to the car rental agency. We got a shuttle back to the airport and were quite early, yet again, for the airplane to depart. My mom and I got something to drink and headed to an uncrowded area of the airport to read our magazines (well I read some articles and whatnot on my phone). We got early boarding due to my chemo, as I do get tired more easily than the normal person. I will skip ahead to my mom and I getting picked up at the airport by my dad. We stopped by Togo’s to get me a sandwich and got home. I was so tired that I thought I was going to go to bed early, and yet I am sitting here typing. Panda was very excited to see me and got all hyper and was craving attention. I missed him, even though I had only been away for a few days. 

So originally I was planning on heading onto the Bay Area today (as I am typing this in the early AM) but I decided that I could use a day to relax and recuperate. On Tuesday I will hang out with Susette and go to the Monterey Bay Aquarium and watch movies and FINALLY meet her boyfriend. I am stoked about that, and it has been such a long time since I have hung out with her. On Wednesday, I will head back from Susette’s place and stop by at DVC to see my swim friends. I miss them bunches, so I am looking forward to this. I will then head back home as I have an echo appointment on Thursday. Even if my heart looks good enough to start my ICE chemo, I will postpone it until Monday or so. I want to live up this upcoming week! On Friday, I will head back to the Bay Area and hang out with some of my swim guys who have promised to take me out to dinner, movies, and have fun. Well I think it will be Friday when I do this, not quite sure. I swear, I have the best swim team ever. We all got so close and they have been so good to me. I almost cried when I got a group message “forcing” me to let them treat me to food and fun. On Saturday, my family and I will go to a benefit lacrosse game put on by DVC to raise awareness of cancer, putting my blog and name out there, and raising money for the American Cancer Society. I could not be happier with the support system that I have at DVC. The school is behind me in my fight that seems to be one that I cannot win, but they are still there for me. They know that I am doing my best to keep healthy (in my terms) to keep fighting and hoping for a miracle. If this cancer does take me out, it will only be my body that it takes out, I am way too stubborn and smart to let the cancer take over my thinking and my brain. I am no loser, so giving up is never an option no matter what. Luckily, I know that my body is strong enough to keep me going for a good while, and I am the best possible person to know how I am doing based on how well I am feeling. I have to say, that although I do cry very easily now, which is soooooo (x1000) unusual for me as I keep my emotions on a tight lockdown, that I am mentally stable and secure. I am also out and about, walking and hanging out, so that is such a positive. I guess it is human for me to cry, and sometimes it seems that my tears just flow and flow, kind of like a huge waterfall. It could be that since I have held in my feelings and emotions in and kept them to myself for so long, that they are now being released like a leak that won’t get fixed. I hate crying in front of people so much, but sometimes it is necessary. I can only hope that I can keep it together when I speak at the lacrosse game! I mean, the crying (which I will try my best to keep back) will only prove how passionate I am about raising awareness for pediatric cancer and show my will to survive. I mean, these are the two things that are really keeping me going. I have so much motivation in the world now, something has sparked with me.

I have had many people text me, facebook message me, email me, etc to get a hold of me and tell me how inspiring I am and how much they appreciate my words. I am able to touch people in a way that makes them kind of change the way they perceive their problems and think of their issues in more effective ways. I truly believe this is the reason for me being here, to help people and to spread awareness. The world needs to be a happier place, and by changing the way we think about problems can help. I also feel like if I can touch people, that they will help spread the word of childhood cancer awareness and to help bring the funds to get more kids cured and to make survival rates much higher- the percentages that they deserve to be. 

So, please, please, continue following and sharing my blog. I want everyone to know that children get cancer too and that the mortality rates and loss of years is much more than it should be. None of us have lived full lives yet. Some of them are much younger than I am and don’t understand this whole process. I don’t know if this is more of a blessing or a curse. I am fully aware of my situation, so I am emotionally afflicted by the stress. The kids just believe the chemo and treatments that they go through as a way of life. I am able to speak about it and explain just how the life of a cancer patient is, so I can speak for those who can’t. I can also preach to the people who do not know what having cancer is like, or what it is like to have a loved one be diagnosed with cancer. I am here to educate everyone on what it is like, well at least my treatments, and my emotions behind everything. I think this will help bring light to childhood cancer. So before I end up writing too much, I will end this blog entry with the reason behind my scorpion tattoo, although I have written it in another post, I will repeat myself in case someone has overlooked it.

The scorpion really resembles me. It may not seem like it, but I can tell you exactly why this creature embodies me. It is a creature of survival- it adapts to the harshest environments in the planet and they have been the same for thousands, maybe even millions of years. They are pretty too look at, all sleek and shiny, but they do have a dangerous touch to them. You do not go messing with scorpions. They will bite back (or sting back). Although my fighting back is more of with using my words, it still has the same stinging effect. So there you go. And now I will leave you with a few pictures!Image











Fighting a Losing Battle

True to the title, I got bad news today from the tumor board meeting. I was also coming in because I have been experiencing excruciating pain on my shoulder/neck area and on the left side bottom of my ribs. I rated it on a scale of 1-10 as an 8. In the hospital, they kind of made me put my pain scale to where I needed meds at 4. And knowing how much I tolerate pain-wise, this was an incredible amount of pain for me. I took some pain pills before my appointment to dull the pain, and it did to an extent. I could not sleep well and had to get out of bed early to put on two ice packs for my two hurt areas. I then went to my appointment with my nurse-practitioner to hear about the results from tumor board.

It turns out, that the ICE (aka hardcore chemo) that I had taken less than a month ago did not have much of an effect. I also found out that I am inoperable, there is no benefit for putting me in pain from surgery. Radiation will hurt my heart even more, and that is my main issue. My heart has fluid or tumor around it and in the left side of the pericardium. Basically, the surgery would be incredibly dangerous as it would be near my heart, but it would also expose other tissue that has cancer cells in it, causing them to grow into tumors. As it stands, my heart has pressure on it and will eventually not be able to pump as much blood out to the body, causing eventual organ failure. So this was not the news that I wanted to hear. I cried and cried, I swear my timing with everything is awful. I know I will be able to live to see my 21st birthday and the New Year. I still have more goals that I need to achieve before I leave the earth.

So here are my plans for the near future. My mom and I are going to fly out to San Diego on Friday because we are going to get tattoos on Saturday. Yeah, the best tattoo shop that I found was in San Diego, so that is exactly where we are going. I am going to be getting a black scorpion that I have been planning on, while my mom is getting a heart-shaped lock with two keys, representing Mark and I. Egor will be visiting us for the day that we are getting the tattoos because he is stationed there. This makes for perfect timing, because I am going to be seeing all my friends soon, luckily it is close to winter break so my out-of-state friends will be flying home. I am so excited to see DeAngela and Aly! I am going to be visiting Susette up at UC Santa Cruz and visit her during a weekday- it has been forever since I have seen that chick! Kevin lives close by so obviously that will be easy to see him. I am unsure of when Job gets home from his training, and I miss him so he better be coming back soon! I miss my crew, I know we will all get together. I am also going to be visiting my swim team at DVC next week after I have taken my day with Susette. So I will spend two days or so in the Bay Area. On Thursday, I am getting another echo cardiogram and meeting with a bunch of the oncology team to see what they can do to prolong my life as possible. Let’s be real, I still have more things to accomplish and more places to visit, as well as more people to reach out to. I am also going to be planning a Florida trip after I hear what my treatment options are. As many of you know, I LOVE Florida and it has been my dream to go to Florida Gulf Coast University and to live down there with my dad. I wanted to get a boat and have cars and constantly be tan because of the amazing weather. Bugs are not a big deal for me whatsoever, and I am sure my soon-to-be tattoo will scare them off. Luckily, we have a great family friend who is more of family than friend, who has a vacation house in Tampa that is connected to a canal and he has a boat. I love that house so much, so I am excited to visit it. I am planning on going sky-diving with Kevin in the near future. It is worth the risk. I am also planning on going to Las Vegas with Kathryn and Cheryl and my mom to eat the good food, go to the clubs, watch the shows. Kathryn and I are one day apart, I am the older one. So we both turn 21 in December, so we have been planning on having all the fun- with our moms paying for it. Hehe. They know it and they don’t mind because it will be so worth it. I will be renting a scooter thing in Vegas because I am not going to walk more than is necessary and getting out of breath. Other than these things, I need to think a little more about what my bucket list should consist of.

So with my whole dying thing, I have an idea of what it is, to die. For some, it means going to heaven, being reincarnated, etc. For me, I believe it is a lot like sleeping (and boy, do I love sleeping) and dreaming. I have had dreams where people who have died have visited me. Andrew visited me in a dream and it was real. Uncle Mike visited me in a dream and it was real. They are always happy in the dreams and I know that they are ok and that they love me. I promise that I will visit my friends’ and family’s dreams often, and it will be the real me. This is one thing that I am sure of, I will always visit and always be happy. Whenever you dream about someone who has died (who you care about) then they are watching you and are with you. I will want you to be happy in the dream, because we would both know that we care about each other. I firmly believe in this, and it makes sense to me and there is no need to worry about everything. Dreams are amazing and they are always entertaining, so I will never be bored, especially if I end up visiting in one of YOUR dreams. I will visit as often as I can, I am never going to go away for good! Let’s be honest, I think I am a pretty memorable person! Besides, I have so much knowledge about how to kill zombies and stuff, so I would be a perfect teammate for a zombie apocalypse dream.I never die in those dreams and I have to say that I am beyond legit in them. I use flamethrowers, chainsaws, and have other-worldly athletic/jumping abilities. So happy hunting ;]

Another thing I wanted to discuss is what you should get out of knowing me and what I want each and every reader to do for me, kind of as a parting gift:

  • pass on the knowledge that it is better to be happy and think of the good things in life.
  • Do not be a negative person, but if you do have to vent every once in a while, then you are more than welcome to.
  • Just do not suck up the positive energy from your friends, have all of you feed off each other and be even more positive
  • Be confident in who you are. Sure, modesty is key, but it is best for you to acknowledge how awesome you are. People love hanging out with confident people (not to be confused with cocky) and again, there goes the positive energy. Hell, I am bald and am super white from not swimming, am getting too skinny for my likes (including having the tiniest wrists known to man) yet I STILL know that I am not only attractive (I think I am pretty darn good looking actually), but I know that I am very intelligent, a good friend, and a great mother to my kitty, Panda.
  • Embrace your not-so-fantastic traits. I know that I am overly obsessed with my cat and that I would put him over having a relationship with a guy any day. I would not have it any other way. I get overly-irritated at people for no reason. I guess I am too good at showing how I feel based on my facial expressions, and annoyance is a very common one for me. I will own up to that, but I would never change it (well, I can work on it, I am not ashamed of this personality flaw). I get overstimulated by people when we are inside. Especially in my own house. Every noise bothers me (it seems that I have incredibly good hearing by the way) and I just end up shutting down completely. Outside and with a group of friends, I am perfectly fine. But sometimes I just need to have someone present, but silent. I enjoy the company of others and just them being there makes me feel happy. Words are not always needed. I feel if you are truly comfortable around someone, you can just sit and enjoy each other’s company. I have social anxiety, but who wouldn’t after being taken from one harsh reality to another? I am not as bad as I used to be, but it sometimes gets to me. I am a big flake. This is attributed by my social anxiety for the most part. Sad as that is, but my flaking is never to hurt someone, it is just my brain freaking out on me. I am also very, very, OCD about time. I need to plan everything out and bring every possible thing that we might need for an activity. But that does have a good part, that I am always on time! Hm. What other personality flaws do I have? Well, I get incredibly angry when people complain, mostly about pain or how much their life sucks. Cuz, um, no. Their life does not suck. Everything can always be worse, even in my case. Just be happy with the cards you have been given, and if you aren’t pleased with how your life is going, work on it. Nobody likes a negative Nancy, so just be positive. Also, when  people complain about pain to me on a regular basis and it is not warranted, I will give absolutely no sympathy or empathy. Sorry =P
  • Another thing, do things in your life that if you were to be dying in a month, that you would be proud of the things you have done. Would you be proud of drinking every night til you puke? Would you be proud of constantly fighting with your parents? Would you be proud if you were a bully? Accomplish great things! I am not saying a party once in a while is bad at all, quite the opposite. Have as much fun as you can, but accomplish your goals that you would be proud of sharing with everyone. Make it so that at the funeral, people could say “he worked incredibly hard in math”, “he saved me from being bullied”, “he was such a great football player and was dedicated to the sport”, “he was such a nice guy and no one can say anything bad about him”, “whenever we had problems, we were always able to talk things out and stop fighting”, “he was the best big brother that anyone could ask for”, “he was the best son anyone could ask for”, “he was my best employee, he always helped the customers in a friendly manner and was never late to work”, “he helped out with the community so much, it made a difference in people’s lives”. Life is all about the choices you make, so make the right choice. Make the choice to stand up to a bully, work extra hard in practice, be dedicated to your boyfriend/girlfriend and treat them well, learn how to play that instrument that you have always dreamed about, go the extra distance for a friend in need, be kind to your family, be appreciative of your teachers, do something that makes you happy- cooking, dancing, a new hobby. Play videogames, but also have another hobby that is a little more tangible (sport, job, instrument, help around the house without being asked). I really don’t think any of these things are boring. I always thought it would be fun to learn a new language- I know a few words in Japanese, Russian, and Spanish, but that is about where it goes. Save up your money and go to the concert of your dreams or go take a dream vacation. Set goals and achieve them. Make sure you are happy. I know that I set a lot of goals for myself, and I do achieve them. My best example by far is that I qualified as an All American without my full lung function and cancer already in my body- without even swimming in state! Make reachable, but difficult goals and they will taste all the sweeter when you accomplish them. I promise!
  • Of course, I cannot express this enough, be a good friend and surround yourself with people who are also good friends. Talk things out if there are ever any problems (which, chances are, will happen) and see things from the other person’s point of view. I swear it works and you get a better understanding of your friend and how they tick. If someone does something incredibly deceitful and wrong to you, drop that friend because they are no friend to you. Do not worry about popularity, don’t hang out with a bunch of people who you hate and who hate you back just to be in the in-crowd. It is so not worth it. In the end, popularity gets you nowhere. Being nice actually does. People will want to be around you more and will be nice to you back. Don’t be a kiss-ass, just be genuine and nice. It will make your life so much easier and so much more enjoyable when you spend it with people you care about and who care about you right back. Also, compliment your friends when you truly feel like they deserve a compliment. It is as easy as telling them that they are such a good friend and you are glad that you have met them, to saying that they are attractive , smart, etc. Especially when a friend is down, be nice to them and cheer them up by trying to make them laugh. (One of my catch-phrases from high school swim that I still use today is, “It’s a little nipply outside!”, joking about how when you are in a swimsuit and it is cold outside, your nipples get obviously hard. I also stick out my index fingers and pretend that they are my nipples. It never ceases to make people laugh, and trust me, having the sticking out nipples is a little awkward and embarrassing, but by making a joke about it makes everyone more comfortable about themselves)
  • Another thing that I cannot stress enough, is: stay away from the drama llamas. Seriously, though. They just drag you down and it gets old very fast. This reminds me of the couples that are always extremely public in their constant breakups and makeups. Or if you have Twitter beef with someone- how immature can you be? If you have an issue with someone or someone has an issue with you, plain and simply grow some balls and talk it out. That is not only the easiest, but the best way to solve any problems or any misunderstandings. Social media is no way to air your dirty laundry pretty much every day. It is annoying and draining trying to figure out if people are dating or not dating if they have public breakups and fights publicized. Like, seriously, it makes them sound so immature and so dramatic. If you breakup and makeup every other day and make a big deal about it, chances are that you are not meant for each other. You may love one another very much, but you can never be truly happy if the relationship flip flops so much. As much as I have pretty much no experience dating, I have seen my friends and others enough so that I have a pretty darn clear view of things. Sure, my longest relationship was 3 months when I was a senior in high school. Sure, the most recent guy I dated only lasted 3 weeks (horrible timing, really, that’s the story of my life). However, since I have a good self-worth and I know who I am and what I want in a guy, the last guy I dated and I got along perfectly. We would communicate and were honest with each other about everything, he even asked me questions about “periods” in general, because he was genuinely curious and felt comfortable asking me about this very uncomfortable subject. That is how I feel relationships should be, about communication and understanding (well, as a base, other things are needed of course). So please, stop with the Facebook, Twitter, even real life drama. It is a big waste of time and energy that could be spent having fun and being happy. Just let it sink in and think about it. You will end up agreeing with me.
  • Another thing, do not be judgmental of people so easily. Yeah, a first impression is needed and we always judge by what we see, but there is normally more substance to a person than just the outside. Give someone a chance to be your friend, do not decide that they are not “cool” enough for you if you haven’t even spent time with them. If you do talk to them for a little while and THEN decide that you two do not click as friends, then that is perfectly fine. It is definitely a “don’t judge a book by its cover” situation, but I don’t expect you to not judge them by the outward appearance. Hell, I do. I judge people on the clothes they wear, their eyebrows, and their teeth. Oh, and shoulders (it’s a swimmer thing). But that does not mean that I will outcast someone if they do not look like my ideal person. Normally you end up finding things in common and that this, maybe strange looking person, really is awesome and you share a lot of the same interests. Just food for thought!
  • Um, if I haven’t already said this, be grateful for what you have. Sure, things could be better, but they could also be worse. Be grateful that you have pretty eyes, that you have an amazing pet, that you have good looking legs, that you are smart, that you can write poems, that you are athletic, that you have a normal family bond, that you have great friends, that you are alive. That is the biggest thing, be happy that you are alive and well (maybe not in perfect health, but you are indeed alive if you are reading my blog). That is what I ask of you.

I am sure that I will think of other things that I need to add to this list of “Lauren Lessons” that I have already. You can learn a lot from people who have gone through hardships and kept their heads up. You can learn a lot from your parents, grandparents, and even friends. So please read and really let what I have said sink in and take it to heart. And mostly, be happy. That is the best feeling in the world. So do things that make you happy, be with people who make you happy, be happy with yourself.

I will keep you guys updated on everything that is going on, and my breathing is fine and I can walk. I am not a goner just yet! (I feel like it will be a long while before anything gets super critical in my health) So if you could, as much as I do not believe in God, but I do believe in the power of wishful thinking and the power of prayers. So if you could please, please hope, pray, wish, have good thoughts about me, anything that can help. I would really appreciate it. I need all the support I can get.

Oh, and if you could please forward my blog to all of your friends, family, teammates, coworkers, etc that would be great. I am trying to reach out and touch as many people as possible. I would love to share my knowledge, my battle, and my thoughts with as many people as I can. I need the public to be aware that childhood cancer is deadly and honestly, there are never as good of cure rates because it is hard to do a clinical trial on a child. I am at that awkward stage, but I do have pediatric cancer. Please spread the word about pediatric cancer and my blog. I also have about 500 business cards with my name, email address, my slogan “Raising Awareness. Changing Perspectives.”, my blog (TheNotDyingGirl.com), my phone number, and another message that states, “Talk about it. Make Childhood Cancer a household name.” I would really appreciate it if some of my friends/ acquaintances could get a few from me and hand them out to people who would actually read about it and spread the word. I want Pediatric Cancer to have a name as big as Breast Cancer Awareness Month (Childhood Cancer Awareness Month is actually in September, but guaranteed no  one knew anything about it, and our ribbon is gold by the way, my specific one for sarcoma is yellow) so that the research and funding is given to where it needs to be put the most- into the world’s future, the kids.

So I am done for now, I need to go to bed and change, because I am sooo hot and sweaty with a blanket covering my legs, on top of that blanket is my equally hot laptop, and I am wearing pajama pants and a sweatshirt. Yeah, it is time for me to go.

Here is my contact information:

Lauren McCullough

@facebook: laurenmccullough2

@twitter: swimchickLM

@instagram: swimchicklauren

@vine: swimchicklauren

email: shashimi1992@yahoo.com

The Waiting Game

Tomorrow I will finally get to hear about tumor board! I am incredibly nervous about it because at this point I have no idea about what to expect. I am hoping that I am eligible for a lot more radiation along with my chemo. Having surgery as an option would also be reassuring. I always freak out and get worried about being disappointed by the results, but I feel it is better to be well-informed when it comes to my disease and health rather than to be ignorant. Sure, I strongly believe that ignorance is bliss, but when it comes to my health I need to know about everything that is going on inside me. If I stay in the loop I can be more proactive towards getting rid of the tumors who call inside of my chest their home. I am lucky enough to have friends, family, and numerous strangers who have been affected by the disease letting me know about possible treatment ideas. I have gone to my doctors asking about stem cell transplants and various other treatments, but for the most part more research needs to be done to make the treatments more effective.

I am fortunate that I have such a strong body and mind going into this. I believe that because of being stubborn helps me not give in to the hardships of cancer. I turn the drive of wanting to win in my races into the drive to survive and thrive. I refuse to lose the war, even if I do lose some battles. That is how I felt in swimming, even if someone had a better time than I did, I would improve on my time and feel accomplished. If I did not better my time, I could brush it off (well, I would not dwell on it for more than a few minutes) and say that at least I tried my hardest and there are always things I can improve on. I think taking life with a light heart is what more people need to do. Problems can always be solved one way or another, so no need to dwell on them. Even the hardest math problems can be solved with time and effort, and I believe this can be related to real life problems. As much as I hate saying and thinking about this because it makes me feel guilty- things can ALWAYS be worse. Always. I hate to admit that I often find me comparing my life to the shell of other people’s lives (what I can see from the outside). I tell myself that I could have an auto-immune disease along with my cancer. I could have serious friend issues. I could be uncomfortable in my own skin. This makes me thankful for what I have and for who I am. On the other hand, I do look at those who are healthy and wish that I could get back to my normal life. No use of crying over spilled milk, right? 

I also have had many opportunities come my way through my disease. Sounds weird, but it is true. As many times that I wish I could go back and somehow not have the problem with my chromosome number 22, I also do not know who I would be if I were to not have dealt with this disease. I like to think that I am a better person and am able to do more good because I have cancer. I have met so many great people who have changed my life forever. I have touched the lives of other people as well have had my life touched by many. I got my drive back for swimming, even though I may not be able to dominate the competition in the pool right now, I no longer have a mental block about it. I got my wish granted to go to the Olympic Trials in Omaha, Nebraska and met Summer Sanders (who has visited me in the hospital and has been a great friend) and Conor Dwyer. I am even more driven in my daily life than I have been. I got a knack for cooking and can look at recipes all day. To go along with my obsession with food, I was given the opportunity to cook in an actual restaurant kitchen and “meet” two all-star celebrity chefs. I am closer to my family because we know how fragile life can be and we cherish our time together. As much as I am more independent to the point of getting annoyed by people in general sometimes, everyone around me understands that I need my alone time and gives it to me. I have become more expressive with my facial expressions while not talking about what bothers me. If I get irritated by someone my face just shows it most of the time, which is awful to say but it kind of saves my breath and sometimes save the sting of words if I am really cranky. What is good about being more expressive is that I am able to talk out my real issues so that I am able to move past them. My mom has been doing a good job of keeping me in check with not dwelling on past problems that I have had with people- friends or not. I figure that talking problems out and getting both party’s stories is of utmost importance in every kind of relationship. It never hurts to hear another side of the story to better understand how a friend, relative, coworker, etc. ticks. That way we learn the soft spots that friends have as well as their buttons so that we never push them. No point in purposely pushing someone’s buttons or hitting their insecurities. I don’t care how much someone dislikes me or I dislike them, I never say the things that would hurt them the most. Do I think about them? Yes, but no one deserves to hear them. I hate it when people point out my flaws so why would I purposely hurt someone else by pointing out their flaws? I guess I should give an example of why I really hate this. When I was younger my face was a pretty darn obvious shade of pink. Working out, being embarrassed, almost everything uncovered this flaw. Instead of having the bronze undertones to the face, mine was pink/red. I had so many people point it out to me that I tried and looked up everything that could possibly help. I put on lots of foundation, yellow primer to cool down the reds, even tried green face correcter. Nothing quite helped my face to not look sunburned all the time. I am still insecure about it even though it has toned down to the point where it looks normal- I had to grow out of it. Sure, it comes out when I am working out really hard and overheat, but this is no big deal. 

I have decided that this post is going to consist of mostly positive subjects, so I am going to give a few weird facts about chemo that I have known to be true. There are so many chemo drugs, but here are some of the funny things that have happened because of the combination of mine:

  • My nails are super strong and grow fast, which normally I hate but I figure I will look more girly (and feel more girly) with long nails. Plus it gives me a good medium for creativity with my bright nail polish colors.
  • My skin gets baby soft. I often have skin that peels all over and this makes my skin soft to the touch.
  • Here is one of the parts of being a cancer patient that is universal: whenever we go in for a checkup, we are asked a very embarrassing question. I am embarrassed to even be posting about it, but now I am a little desensitized because of how often I am asked this question. So, here is the question: How is your poop? Chemo does a number on your body in every way possible and even in ways that you don’t think about, so questions like that are necessary, even though it is an uncomfortable question when asked in front of anyone.
  • Last time I was going through chemo I no longer needed deodorant. Weird, right? I suddenly stopped smelling, which was fantastic because I have still not found out what my favorite deodorant is and I have been searching for years. It is some sort of clinical strength that smells like baby powder, but I cannot remember the stupid brand. I am hoping that the chemo will make this happen again!
  • Here is a fact that most people know about, but it is still interesting. Hair falls out, obviously on the head, but eventually leg hair ceases to grow, armpit hair stops growing, I can pull out arm hair, etc. It makes showers take even less time!
  • Sense of smell is heightened to much that I can smell even the slightest scents. This kind of means that I don’t need to use much perfume at all, making even my shampoo and body wash work well enough for my likes. On the other hand, I can smell Panda’s breath after he has eaten his wet food in the garage, from about 7 feet away. My mom definitely cannot smell that, but I can always tell when he has eaten.
  • My temperature, as in how warm or cold I feel (not actual internal body temperature) changes drastically. I seem to be either really cold or really hot and sweating. My feet also get extremely cold or at least feel that way to me, even with them not being cold to the touch. I can be wearing the warmest slipper-socks and still have them be freezing to me. I have had my mom warm them up for me in the past because they were bothering me.
  • I get weird cravings, I imagine it is kind of the same as pregnant people get. I get a certain food on my mind that I need to eat otherwise I am not satisfied. I often have that craving for a few days and will eat that item for a few days. In the past it has been the Habit, Tapioca Express, I Love Teriyaki, and Outback. Right now the “tempura” shrimp from Teriyaki sounds extremely good. I put the quotations around “tempura” because at the Laguna location it is not tempura but panko-breaded shrimp. I love that crunch of the panko! I also had a hankering for mashed potatoes, so on Sunday my dad went out to the store and got me 5 potatoes and cooked them all up, I have eaten them every day since! It will make me fatten up a bit because of all the butter I put in it!

So this is all I am going to write about for now, I hope you enjoy the little facts at the end, it easily made my mind wander away from my anxiety over the results of tumor board tomorrow. Oh, and I am also going to fill out some paperwork for SSI with my social worker tomorrow. I have gotten much closer to her during this diagnosis and am thankful for that. I know the paperwork will be accepted, especially considering that I would not be able to hold a job down for six months. If I am unable to even go to school or have an online class at this point, I am deserving of it in my opinion. This will help with all of my random cravings that I have!

P.S. I post on Instagram more often than on my facebook, so if you want a better idea of how I am feeling based on my appearance, you can add me on that: swimchicklauren

I also created a twitter and am still getting the hang of that: swimchickLM

The Transformation of my Hair


So this is my hair literally the day before it started coming out. It is amazing how fast it started coming out- there was absolutely no way that I was going to be able to dye my hair, which is unfortunate because I have the hair dye sitting on the table in front of the couch. I was all dressed up to go to my chemo buddy’s fashion show at Macy’s for Make-A-Wish. I had no clue that by the next night I was going to be lacking a lot of my hair. I am glad that I did take pictures before going out because I hardly wear makeup and I decided that it would be fun to go all out for the event. Plus, this picture shows how loving cats can be, Panda is truly my cuddle buddy. He spends all day with me and never gets sick of me!


This was only some of the hair that I managed to pull out. I would say this is only 20 minutes worth of hair. Crazy, isn’t it? That is just how dramatic hair loss from chemotherapy really is. I only had little nubs of hair to pull out the first time it fell out because I had it shaved off before. My hair also looks a lot darker when it is not on my head, which I found interesting and also the case the first time I shaved it. Of course now there is teal dye to account for the discoloration, but the blonde was darker too. In the picture, there is also a tissue sitting on my lap because when I originally started pulling my hair out (which, may I remind you, does not hurt whatsoever!) that there would not be a whole lot to pull out. Boy, was I wrong! I figured it would take a week to fully be out, but it took probably one or two days for it to be gone. I was kind of glad, because since I decided to document everything, I was afraid that I would have to walk around looking like a rat for a few days. Luckily, I only had two public outings in the day that I looked like a rat- both of which were in hospitals. It was really interesting too, because this time I did not feel the stares of everyone. Maybe it is because I don’t care as much about what people think about me or how I appear, and maybe it is because people understood what I was going through. I hope it was the latter one, either way I was happy that I did not get the uncomfortable stares and feel the need to stare right back at the people.


This is what I looked like when I went to the lab to get my blood drawn, the day after I started losing my hair. I guess you could say that I was going ham on the hair, I could not stop myself from pulling it out, chunk by chunk, as disgusting as that sounds. I just wanted to get it out as soon as possible. It was also quite fun, and I felt accomplished when I was able to get most of it out before the few strands left on my head got uncomfortable and I felt the need to shave it. It kind of has a tugging feeling when you sleep on hair that clearly wants to fall out, which is weird because it does not hurt to pull it out. The human body sure is strange!

Um so my video turned out to be rather large, so please make your screen smaller so it is not overwhelmed by my face!

This is the video that I have been trying to upload for days. Well, I hope that it actually loaded onto it this time. All it shows right now is a code for it. So let’s hope for the best! The video is rather long, but I think it is a good representation of how drastic the hair loss is.


And this is me bald. Pretty self explanatory, but I am pretty comfortable with my head because it is not misshapen at all. I have like four moles that I hate and would love to get removed, but I can deal with them. My eyebrows and eyelashes should stay in for a while, but then again I have never had carboplatin before, so I guess I will have to find out as things unfold!

So my hair and I had a little falling out today…

So my hair and I had a little falling out today because it did not agree with the chemo that was given to me. So we decided to go our separate ways. (get the joke?) But in all seriousness, my hair is falling out rapidly. I might be in a little bit of denial right now, because I really really wanted to color my hair red before it started falling out. Oh well, it’s all about timing. I decided to video myself going through the process of pulling out my hair, which, by the way, does not hurt one bit. It is kind of like brushing your hair, it doesn’t hurt. You always get little strands of dead hair in the hairbrush- it just so happens that mine is like massive chunks of hair as opposed to a few hairs. I did not have a freak out. I thought I was going to have more of a bad time with parting with my hair because I have lost it once before and I grew attached to it when it grew back. But no, losing hair is a small price to pay to live. I feel the need to show people what it is like to have someone lose their hair, because it can be scary to those who do not know what to expect. I now have a few bald spots in my very very thin hair. I was basically told by a relative to shave my head, but that completely defeats my purpose. I shaved my head the first time before my hair even started falling out because I thought it would be gross to have strands of hair coming out. Been there, done that. I have mad the conscious decision to not shave my head. I am documenting what it is like when hair falls out from chemo. There really isn’t a lot out there that new cancer patients can look at about what hair loss is going to be like. I feel the need to educate people about cancer, and this is one of the easy ways to do it. Shocking pictures and videos that really stick in someones mind is perfect for others to get information about what they could possibly go through. Cancer is scary, but if you already have an idea of what will happen, the unknown becomes less scary. You know that there are other people out there who are bald and insecure about it because of social norms. This needs to be stopped!

Ok, this has taken me a few days to write because I have been attempting to upload a video to it with much difficulty. I guess I should update you guys on how I have been doing. So on Friday, I had to go in for a platelet transfusion because mine were at 16. They should be around 100 or so, which means that mine are pretty darn low. I have bruises everywhere and it looks like my family has been beating me- but trust me, it’s just the platelets. The bruises form from getting my nightly Neupogen shot in the arm, and I swear, even from a tiny diabetic needle, it looks like I was hit with a baseball on my arm. My right arm has tons of little bruises, as well as one on the inside of the arm from my CT scan back when I was in the hospital. That IV did not even hurt, so I don’t understand why the bruise is still there after maybe two weeks of healing. I guess that is platelets for you!

I got to talk to my oncologist about what I have been hearing about from various Ewing’s Sarcoma groups, such as clinical trials and stem cell transplants. He told me that there are many open clinical trials in phase 1 for Ewing’s, but that is more of just testing to see side effects of the treatment and it is considered lucky if the treatment does any good. If the trial is in phase 2 or 3, it is more reliable, but I haven’t found one worth my time or my health. Stem cell transplants sound like a really good thing in theory, but there hasn’t exactly been too much success happening in that department. Since Ewing’s sarcoma is so strong and hard to kill, the stem cells that have been harvested tend to expire by the time someone’s tumors are gone. Or something along those lines, I was in Ativan Land, so the details may be a little sketchy, but we will keep that as an option as more studies are done and stem cell research has better success rates. I think it is all really about timing. Right now, we are all stalling my cancer basically until something fantastic comes along. Or, well we were until I got sick, so we are treating it more aggressively now. I trust my oncologists, radiologists, and surgeons with my life (well duh!) and I trust that they are looking into everything that they can, and if I bring something up that they did not know about, they will put time to look into it. That is why I am so happy with Kaiser, because all of the staff for oncology are fantastic! They care about the kids (including me) and they get to know us, they know what we can handle treatment-wise. They know what our goals are other than the most primal need to survive. They shape plans and change plans based on how we react to certain treatments. As long as I am getting better, I guess I don’t mind losing another year of my life to cancer, but at least I am doing something about cancer awareness that I had not even thought about two years ago when I was 18. I guess you could say that I have done a lot of growing up in that short time span, I kind of found my calling in life. I need to use my power of writing to spread childhood cancer awareness. Hey, everyone finds their niche, and I finally found mine.

I did a fair share of walking on Friday, my dad and I went to the hospital so I could get my butter-looking platelet transfusion. I swear, the platelets look exactly like clarified butter so it doesn’t gross me out. Then again, nothing really grosses me out unless it comes to smells and food. So my dad and I walked down to the cafeteria which is in a different building, kind of far from the clinic. I wanted to get my favorite salad there, but I found out the hard way that they are trying to go healthier, so my favorite ranch is no longer there, good croutons are nowhere to be found, and no more crumbled bacon. I need to gain weight wherever I go, so that low fat stuff is just not going to cut it. I was pretty disappointed to say the least. They did have the best ranch dressing… So after we got our food we quickly walked up to the other building, at an incline. I was tired, but I felt accomplished that I could actually walk that far without having to stop for air. So my breathing really is getting better. Don’t get me wrong, I was pooped, but it was a step up from having my mom wheelchair me in the hospital, rather than only wheeling me out after I had my 2mg dose of Ativan and am completely out of it, tired, and happy. I actually went to bed at 6pm on Friday because of the benedryl and ativan that I took, I just get zonked out. It takes away the nausea that I get just from stepping into that part of the hospital. Building C is what I think it is. It just has a certain smell that I perceive as getting chemo, so just the smell alone of the hospital (the in-patient hospital and the main hospital with the cafeteria do not have this smell) gets me feeling sick. I do not understand why that building along has a certain smell to it, I guess they use different cleaning products or flooring or something. I always get a big whiff of it when I first go to the steps up to it, and am blasted by this awful smell when I actually walk in. Crazy!

So on Saturday I woke up feeling uncomfortable because my hair was pretty much gone, I had some long strands that I managed not to pull out before bed, and the hair kind of pulls, I don’t know how to explain it. It just doesn’t feel right. The hair should not be there and it is giving you a warning that you need to shave it soon when it is uncomfortable to sleep on. At around 10am my mom took out her hair trimming kit and started shaving away. I no longer look like a rat or have old people, thin hair! It was really gross at the end… Now all I need to do is go out and tan my head to make it match my face! I need to get some sun anyways because it makes me happier and I plan on keeping my freckles around. My dad came over at about 1pm to hang out with me, and at around 3pm we decided that we should go to The Melting Pot because it was featured on a show that was dedicated to great places to get a lot of cheese. Cheese sounded so good to me at the time, as well as the caramel and chocolate dessert fondue. We got a Wisconsin cheese fondue, it had three cheeses and some white wine. I was so looking forward to the cheese, but the wine just ruined it for me. I was so mad, but I ate some of the meats without it anyways. It’s not anyone’s fault that beer or wine do not settle with me, so I was not going to want another cheese thing. When we got our dessert fondue, my dad and I knew we were going to be in heaven. The caramel, chocolate, and caramelized pecans in the pot was just fantastic. We dipped in strawberries, bananas, cheesecake, marshmallows, brownies, rice crispy treats- you name it, and it was sooo good. That hit my craving right on the spot! We then went home and I went straight for a nap with Panda. I did not sleep very well because the heaters in my room are on and I cannot sleep when I am too hot. When I got up from my slumber, my dad was watching a Grindhouse movie. This one happened to be one I have been dying to see, Planet Terror. It was a gory, funny, zombie movie that I enjoyed so much. I really recommend that you see it if you can handle a lot, and I mean a lot of blood and guts. When that was over my dad went home so my mom and I ended up watching the Miss Universe pageant.  It was funny, only one of the top 5 girls actually answered the question they were being asked. The others skirted around the question completely, which was rather annoying. But the girls were gorgeous and most of them had on amazing, sparkly dresses that I loved. I have always dreamed of having a sparkly dress like those, but I do not do pageants so I would not have anywhere to wear it. I personally loved Miss Great Britain’s dress, her whole look was paying homage to Jessica Rabbit. That was pretty neat, so she was a knockout with the dress and the hair, I was sad that she wasn’t in the top 5 because I adored that dress and I would have been happy to look at it some more! It was memorable.

And now, here I am, waiting to upload this because the stupid video is going to take forever to load. I have a hat on because my head gets cold just because of the lack of hair. I need it to be cold to sleep, but my head gets cold. I swear that is the biggest dilemma that I have to deal with being bald. Whether or not to wear a hat, to bring one where I go, and whatever other things.

The Bottom Line

I have had so much down time that I truly get to think about my motivations for everything I do. Because of this, I have a really good idea of who I am and what I am all about. This is both a blessing and a curse that comes with dealing with cancer. Most people do not settle into their own skin and know who they are until they are older and have had a lot of time on the earth. With a diagnosis of cancer, no matter what age, we are forced to grow up. Fast. Much faster than many of us want to, but it does come with its benefits. Instead of making stupid teenager mistakes and young adult mistakes, I make my calculated risks and pick and choose my battles. We, the kids of cancer, think about the possible consequences of our actions and decide what is worth our time. I guess a good example of this in my life is drinking. Have I had experiences with alcohol? Of course. But what the difference is that I refuse to willingly get sick anymore. I have had more than my fair share of puking that was not of any fault of my own. I recently decided that alcohol is not worth my time. I guess it does not help that my stomach is really sensitive and I am not willing to risk feeling awful for a day. I found out that I can still have fun and go out without drinking, and no one has a problem with that. I have the right crowd of friends who understand that I don’t really drink- I sip slowly. I guess that is also another part of maturity, having and keeping the friends who are worth the time and effort and feel the same way about me.

Now that I am not in high school, I realize what my dad was saying by “High school does not mean anything,” when it comes to social standings. I do not hang out with many of the people that I did in high school. That does not mean that I hated everyone or that I do not keep contact with any of them, but once you are out of high school you get to explore more and meet more people. Without being trapped in high school with the same people for at most four years, you get to pick and choose who you see on a regular or infrequent basis. Sometimes I wish that I hung out with more of my friends from high school, but with different schedules and likes and dislikes, it can be difficult. I will have to admit that I was excited to graduate to stay away from the social norms and cliques. I feel like college was really the place that I was able to hang out with whomever I wanted to without worrying about who was popular or who was not. I also no longer felt the need to wear a lot of makeup on a daily basis, because I did not care. I still don’t care. I would rather not wear any makeup unless I am going out to something special. This is my favorite part of being 20 (and in about a month 21!).

Okay so now to the real reason why I was compelled to write today. I really wanted to start this last night because my head was flowing with ideas, but I was already in bed and I needed my sleep.

Since my way of coping is to put the bad thoughts and bad news out of my head, sometimes I forget why I do the things that I do. I got to think about why I write in this blog yesterday and really ponder about it. As much as I would love all of the things that come with being “famous” in a way or being well known, which I do think about, I am writing this blog for another selfish reason. Not selfish in the way most people think about the definition of selfish, but it is a very clear message: I want to live. Simple as that. I want the “boring” life that everyone else has, I am tired of having an “interesting” life that is constantly changing as quickly as the wind changes. I would love to have my life to be consistent and to have a regular daily routine. With cancer, nothing is ever concrete. My treatment plans have changed who knows how many times that it is hard for me to even keep track of. It is hard for me to make any plans, especially plans that are months away. My health changes from day to day for the most part. Because of this, I want to raise awareness of childhood cancer because I would like to live. There is not nearly enough research being done for any types of childhood cancer, especially the more obscure forms of it. Ever heard of osteosarcoma, Ewing’s sarcoma (that would me my type of cancer), the numerous types of leukemia, or even brain tumors in children? Unless you have immersed yourself into the world of childhood cancer, any of these are pretty much unheard of. Why is that? As Rebecca Melgoza puts it, everyone says, “Not my child.” No one thinks that cancer could ever attack their children. Unfortunately for all of us, cancer does not discriminate. But no one wants to talk about childhood cancer because it makes people uncomfortable. Well, that’s too bad. Cancer is a REALITY for us. No matter how normal anyone considers themselves, how different, how healthy- cancer can still affect loved ones. It needs to be talked about. As much as I hate bringing up the ugly truth about cancer and how it is a part of my daily life, I still do it. It even makes me uncomfortable. I hate thinking about cancer, but if I won’t then who will?

Kids make up the future of the world. If kids are dying left and right of things that CAN be taken care of, why is there no research being done? Why is there no funding for childhood cancer? Honestly, if all of the funding that went to the wish foundations (I do appreciate them by the way) were put into research, I have a feeling that wish foundations would no longer be needed. I wish that the poor kids affected by cancer would not have to go through the whole process of getting a wish approved, because that means that they have gone through terrible hardships.

My good friend Eden is a great example of research that should be done. She had a type of leukemia (I have no clue though) that was really tough and her body was not responding to the chemo that was protocol for leukemia. The brilliant doctors decided to try something, they gave her ICE chemo (which is for hard tumors, this is the type of chemo that I have gotten and will probably be getting more of) and suddenly, her spleen was getting smaller and the cancer cells were knocked out. So why is there no research going on to try different chemos and to make a different protocol? This is something I will probably never understand, but I will still complain about it.

The youngsters (I will include myself in this group) haven’t had the opportunity to live a full life. There are kids younger than I am dealing with cancer and going through hard treatments but they get no recognition. They have no say in the matter, there is no choice of whether or not to do treatment. They go with the flow and deal with the horrible nausea, body aches, mouth sores, being poked and prodded, and just being in the hospital with grace. These kids do not complain. They may cry, but putting up with everything well warrants this. These kids could care less about getting a Playstation for Christmas, they just want to feel good. Material items are only a comfort, never a necessity. I will be honest though, shopping and getting a new comfy sweater makes me feel good. I guess it makes me feel more normal and gets my mind off of the fact that I may look normal, but on the inside my body has been ravaged by cancer. My car is a comfort and does actually get me out of the house more. Nail polish makes me happy, seeing the cool colors that I can choose from give me some sort of control in my life. What would truly make me happy were to always feel good, feel normal, but these things do help. As awful as that makes me feel saying it, material items are a sort of coping.

The things that truly make me feel fantastic is getting good news. This may not even be good news about me, but good news about a friend, but it makes me feel great on the inside. I would prefer to get good news about my body, but I will totally accept good news about my chemo buddies, or even my other friends. I love hearing about people getting good grades, people feeling good in their own skin, doing well in a meet, or really any achievement. I will be honest, I do get jealous when I hear that people are in remission or hearing about the awesome schools that they have been accepted into. At the same time, when I feel good, I feel bad for those who do not. I guess it is a double-edged sword. However, I do feel like good thoughts do help with getting good news, so I try to stay happy no matter what. I am a little cynical (or a lot) but I really am happy. I am much happier when I feel good, but even little things make me happy. My cat makes me happy. Food makes me happy. Watching a good movie makes me happy. Simple things. I also feel great when I hang out with people who understand how I feel. This mainly does apply to those who have been affected by cancer, but other friends truly do understand how I feel and how I am. I love talking to people who complain about the same things that I do- especially those who want to change the way things are. Hey, a girl can dream right? But I am doing more than just dreaming- I am working to make a difference. I want to get the word out that childhood cancer is something that can be treated, given the research and awareness. I want to make it as big of a name as breast cancer is. I don’t see why this can’t happen.