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

Decoration-Making Party!

Today I woke up at about 1:30pm, which is absolutely crazy for me. I thought that my waking up a bit after 12 was bad, but this is a new late for me! I guess I should not be too surprised that I slept in that late as I did stay up until about 12 last night, but still! I guess my body really does need to recover from the radiation damage on my organs. When I woke up, DeAngela was already here and had quietly started working on the buckets. I joined her almost right away after I had woken up, and found out that she had barely just started putting sequins on the buckets, frantically trying to catch up to the amount of sequin work that I had done (we were working on different parts of the buckets). I worked on the buckets for a little while until my “heartburn” started really acting up, so then I vacated to the couch to try to let my esophagus calm down. By the time I got back to the projects, Dee had not only caught up to me, but exceeded what I had done with the buckets, so I was very pleased- I love a good race. Eden came over at about three today to help me with the buckets. Eden’s mom Rebecca also delivered to me some of the containers for the tropical juice that I had posted about in my last post. I was so happy! This means that I do not have to purchase my own juice dispensers and can use the money for whatever else is needed for the wedding, or for my long list of things I wish to accomplish before I leave this world. After Rebecca left Eden, DeAngela, and I to continue our work with the decorations, we found out that we were going to run out of sequins for the buckets before we could finish all 21 of them (we went through a lot of sequins). DeAngela’s sequin job (she was in charge of working with blueish sequins) ended early because she would not have enough to even finish another bucket. She then left so she could hang out with her family and run some other errands. Eden and I continued to work on our part of the buckets until we just about ran out of sequins as well. Dee promised to bring over more sequins tomorrow when she comes over so we can finish the project once and for all.

At about 5:30 I took my shower for the day. Yeah, I know later than usual, but I started the day pretty darn late, so I think that is a good enough excuse. We also had a bunch of babysitting coop ladies coming over to decorate 150 fans to make sure that my wedding guests do not get too hot, although it is supposed to cool down for my wedding weekend, yippee! And by the way, the fans look fantastic, pun intended. My mom provided the working ladies with Panda Express and some wine-coolers, what a better way to treat our guests? I think all that one needs to get people over to help out is an offer of food and beverages. I am not going to give up any secrets on how my fans look though, other than the fact that they look damn good and go with my beach theme very nicely.

Today I was greeted by a very awkward message from someone I went to high school with but was not close to. It kind of came out of nowhere, and I will be honest, I did not know what to expect at first. This person told me that they had done some research on cancer treatment and wanted to give me tips that might save me. (What? This person has no authority to give me tips or anything about cancer, at all.) They were suggesting that I would eat no foods with GMOs or extra chemicals (by the way, I had done a lot of research on GMOs for an essay in English, and there is absolutely no proof that they are bad for you at all). Then they added something about cannabis oil being said to cure it if it is injected (again, what?) as well as saying that hemp seeds hold a lot of different nutrition. Um, in my diet I get plenty of nutrition, and besides, antioxidants are terrible for people who already have cancer and are getting chemo, as chemo is an oxidant, which means it would completely counteract with the chemo. I just felt it was an ignorant statement and I was offended by it. My doctors are doing tons of research (and did I mention that I have four amazing oncologists?) to try to prolong my life. If there was a simple cure like a change in diet then naturally they would have told me about it right away. I trust my doctors with my life, and I know they are doing whatever they can to make me live as long as possible.

Sorry, I tend to rant a little when I get upset about these sorts of things. It’s like, do not talk cancer to me if you have no idea about anything to do with it. If you have not been diagnosed yourself with it or work with it on a daily basis, then you have no reason to be discussing treatment or tips for me. I will take tips from my fellow chemo buddies on what meds they take to make themselves less nauseous, and I have before and so appreciated it. Ok, I think I am done with this topic…

But the wedding is almost here! It is crazy, I am so excited and I know that it will be a wedding to remember. I still have a bit of work to do with the decorations, but it will not take too much more work to get them all done. On Wednesday I am going to get my nails done and get a facial, and whatever else the owner of EllaBlue wants to give me. Oh, and I will finally get my eyebrows waxed… I have not plucked them in way too long and they are driving me crazy, as I am very OCD about them looking nice. I will also be tanning out my awesome swim tanlines. I am pretty stoked about that.

Well, since I have a lot of work to do tomorrow, I am going to end this post now! Goodnight!

Yours truly,

Lauren

Letting Reality Sink in (For the First Time)

Kevin taking funny pictures of me while I sleep

Kevin taking funny pictures of me while I sleep

I guess my sadness is coming through right now because of how scared I am that the doctors cannot surgically remove any tumors because the lining of my lungs, or the pleural cavity, it is very unusual. I have to ask my doctors if indeed I can still go through with radiation because it seriously works with my type of cancer. I keep on thinking about the things I would like to accomplish before I die or get rediagnosed… I am trying not to keep my hopes up to be disappointed, so I will do everything in my power to have a fun and active life.

Today I was visited by my best friend Kevin in the hospital for my outpatient chemo, and of course was in tow with my other bff DeAngela who is taking care of me while she is having summer break. My mom is paying her for the work, considering it takes just about eight hours to get to and from my house (including my chemo). We hung out with my chemo buddy Andrew, as he has the exact same cancer as I do and is only a year younger than I am, and it sure is nice to talk to someone who is going through the same difficulties and compare side effects.

Once I got my Ativan for the start of my chemo I fell asleep and attempted to watch some of the new Batman movie with DeAngela and Kevin, but with no luck. Then again, I would rather be sleeping than feeling nauseous. Today, unfortunately, I am nauseous for the first time and am not in a very fantastic mood. I can only hope that I feel better tomorrow and will be able to start the day off fresh. As long as my cat decides to sleep with me and not be hyperactive, I will immediately feel better.