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

Back to Reality

Sorry for not having been on for so long, and I really do mean it this time. I have worried some people who do not even know me, but I will let you all know that I am alive and fine, I have just been a little hermit lately. 

So why have I been a hermit lately? I can never know for sure, but I have a feeling that it has been because of the depression that just strings along with being diagnosed with cancer- whether it is terminal or not does not change the feeling of wanting to be alone. I felt this the first time I went through cancer in my thigh, I just did not want to talk to anyone and was not interested in texting people or calling people back. I am the same way now. It has nothing to do with who the person it is who I will reply to, I just don’t touch my phone unless I am browsing the internet and whatnot. Ok, I have made a few exceptions to like one select person, but I have been very hard to get a hold of. I guess it is just a little rut that I am in, and I will get over it soon enough, just as I have done in the past. So please, take no offence if I do not respond to your texts or calls or emails, I feel like being a hermit!

Ok, I guess I should update you guys on my medical issues. Even though my cancer prognosis is terminal, there is no longer a date to go with it. No more “3 weeks to 3 months” or even “up to six months”. I will know when and if my time is coming down based by how I feel and how well I can breath. I have been very stable when it comes to my oxygen saturation level has been far above 90% (if you get below that, then you would be wearing tubes to help get you more oxygen. My percentages are around 98%, which is very safe, and that is what keeps me feeling good, if I know that my oxygen saturation level is good, and has been staying good, that means that the radiation is really killing the tumors around the lung. I will always be honest with this blog, and as of now, I would say I have a 5% chance of living, Even with that number being made up by myself, I think it is accurate and it can keep my hopes up that I will be able to go on and live.

Because, I really want to live. (this part is going to be emotional- warning!) I want to be able to actually swim at state and be the best on the DVC swim team. And lets be honest, I would have been captain if I were actually going back to school. I sure hope that I can, because I want to swim, I want to strengthen my relationships with the swimmers I met last year. I love my team, and I need to spend so much more time with them, and to spend time actually competing with them. Gosh, I really want to swim. 

I have had many bad side effects from chemo that I drink. Yes, it is as gross as it sounds. I have to take 2 pills and then gulp down chemo mixed with margarita mix and raspberry lemonade. This chemo made my appetite go to zero. I would not want any food and I did not feel even hungry. I lost a lot of weight. Like, 7-10 lbs of weight. Right now, as we speak, I weigh 119.5. I am normally at least 125. So now I am about to get into the medicinal marijuana industry. Yes, you did read that right. Lauren is officially going to be a pot head. But honestly, without it I would not eat at all. I really need to get my card and everything, Ive been putting it off because Ive been in a rut and have not been wanting to do anything or go anywhere.

Oh, and I have had 9 out of my 10 radiations and I have horrible side effects. The target is raised higher towards my esophagus to try to get a tumor that is near my shoulder. So basically my throat hurts so bad because it is burnt. It hurts to swallow in general, not to mention swallowing water hurts, and eating is extremely difficult. I have to take this “magic mouthwash” which honestly does not do the magic it needs to do. It lasts for like 2 minutes of sorta numbness, but doesn’t hit exactly where I need the numbness. So again, I am losing weight. And I actually want to eat this time so that makes it much more annoying. I am craving “Moose Munch” which is caramel corn with chocolate… YUM! But most of all, I really want to eat the Reeses’ Puffs that are in my pantry. I want those so bad, I can almost taste it. Too bad that would tear up my burnt throat almost as much as Cap’n Crunch. 

Ok so how about some good news? I went to the bay area to go to what was supposed to be a rager swim party, but it turned into a kickback. I was actually really glad that a lot of people flaked, because there was absolutely no drama between anyone in the group, and the few of us had a lot of fun and bonded. We played some water pong, and I must say, Steven and I made quite a team! The other people who were there was Dom and his girlfriend Shannon, Tyler, Alexa and her friend, Jose, and Matt and Julio for a little bit. We ended up cooking a bomb pasta with white sauce (made by Steven) and caramelized polish sausage (done by myself). It was so good, I swear Steven has the best kitchen ever filled with everything you could ever use in making a dish. I would be cooking all day there.

The day after the kickback, I went to swim with dolphins. It was a whole lot of fun, but it was a little bit of a short ride. We put on wetsuits and got into a pool with two dolphins. I got to ride one, and man, she decided to go fast when it came to me, which was awesome!

So my last day of radiation is tomorrow, and to celebrate I am going to be bartending in an actual bar! I am going to learn how to make drinks and serve them up, I am very excited for this, cuz I have always wanted to know how to make good drinks to impress my friends. A lot of my babysitting coop family members are going to be there as well, so even more of a reason to be excited.

Also, on Sunday, I will be doing a photoshoot with one of my lovely model friends, Danielle. If they can make me look as fantastic as she does (even though she is gorgeous without trying) I will be very excited. I have kind of always wanted to do a photoshoot, but never had the opportunity to do so, and now, well I guess that will be taken care of.

I also did start an OKCupid account, which is a dating site, because there arent exactly many ways that I can meet guys at this point, and I would love to date around and meet new people and just have a lot of fun. I did end up going on a movie date, and we were supposed to hang out the next day, however he had to cancel. Then the next day, we planned on hanging out again, and he totally blew me off and flaked. I have not heard from him since, but it is his loss by far! Shows his immaturity anyways. I havent been on that site in a few days, even though I am talking to some really cool guys.. its just me being a little hermit again…

But I did start writing again, so hey, maybe I will slip out of these antisocial ways soon!

My Day of Pampering!

Today I was woken up, not by my mom, but by my butthead of a cat, Panda. He was in my room at about 9 in the morning and was jumping on my bed and playing with some cords that are hanging off of a metal drawer that my mom has set up for important documents in the corner of my room. He probably played in my room for thirty minutes before becoming bored and leaving. I then actually got up at around 10:30 and promptly sat on the couch due to my burning esophagus. I caught up on the latest episode of “Catfish”, and again, was not surprised when yet another person had been led on through the internet. Man, are they dense! 

DeAngela came over at around 11 and we kind of just sat around watching tv, including my favorite daytime tv shows, “The Chew” and of course, “The Jerry Springer Show”. Yeah, I am so not afraid to admit that I watch that show. It is full of trashy people and ratchets, and I must say that it makes me feel so much better about myself! I am embarrassed to say that I do compare myself to these people though. While sitting on the couch I got quite a few phone calls, so I was feeling pretty darn popular. I believe the first one was from my case manager, Shelly. We were talking about my issue with my esophagus. She immediately sent for a medication to be filled for me at my closest pharmacy to try to alleviate my pain. My mom then called and basically told me exactly what Shelly had literally said minutes before. Then I had a call from the owner of Mikuni’s. This surprised me, and we talked for a little bit and he said that he was forwarding my wish for sushi at my wedding to his marketing team, so I am hopeful that I will get top-notch sushi for my big day (okay, mine and Egor’s big day). I also got a call from my social worker, Troy, to kind of touch base with me for my hospice care. At 3:30, Dee left for what I thought was running errands. I would later find out that is was part of a sinister plan that was in the making (okay, not sinister, but I believe it brings in some suspense).

My mom came home at 4:10ish to take me to my spa day. When we got there, I was surprised to see quite a few familiar faces at the salon waiting for me with balloons, champagne, and tiaras. All in all, the people who were there were Kevin, DeAngela, Sydney, Eden, Rebecca, Ken, Susan, my mom, and then me! The salon name is EllaBlue, and I was astounded by the generosity of the owner, Julie. She offered any and every service for my mom and I, for free. I got a manicure and a pedicure, my eyebrows waxed for the first time (which did not hurt at all), my eyebrows tinted to be a little darker, had my makeup done (testing out for the wedding), and got a spray tan. We all had a fantastic time with food catered by the Habit burger and Noodles and Co. Yeah, I guess you could say I have been spoiled this week, but I guess it is my wedding week, so I am not expecting this treatment after, trust me on that! I was also given a fantastic gift from Eden and her family- toasting glasses! They are beautiful and are engraved with my and Egor’s name and our wedding date. Cute! It was a long day of pampering, we were there for pretty much 4 hours, so I am pooped! Oh, and did I mention that Jamie from EllaBlue has offered and arranged time for me on Friday to give me a facial and eyelash extensions? She is also doing my makeup for my wedding day, if you did not already pick up on that. What a great person (and her crew were pretty darn cool as well).

I got to have a little bit of a mom and I night tonight, as when we got home I pigged out on some leftover Panda Express and brownie pops, trying to gain just a little bit of weight back from what I lost from only being able to eat when my heartburn was not bad. (Oh, and my new medication works like a charm! Thank goodness, I finally have some relief!) We watched some tv and now she is in bed, and I am thinking that I should do the same!

Tomorrow is Fourth of July, and I am pretty excited for it! I will be spending it with my friends and family at my dad’s house. We have a pool there and are holding a party there, which we have been doing since I was little. It will be full of people who I have known for my whole life, and they will all be present at my wedding as well, so I will be seeing a lot of them! I am looking forward to tanning (with actual sun this time) and hitting the pool with my friends and family. 

So, until tomorrow, yours truly,

Lauren

P.S. My case manager let me know that I will be able to get future radiation treatments, so I guess there is a little hope left for me, you never know, I might get that miracle! If not, I plan on staying alive at least until I turn 21. Gotta hit that mark!

Lazy Yet Productive Day

I finally got to sleep in today! Thank goodness for not having radiation, I slept in until 10 and did not even manage to eat my breakfast. Luckily I had some leftovers from Olive Garden, which I sent my mom out to get me the night before, so I had some nice cheesy pasta to brighten up and start my day.

I had quite a few guests today, but for the first time I had some early guests. At near 11 Jeanne, Dianne, and Aly from the babysitting coop came by to offer their services and to say some words of support for me as well. I have known them for pretty much my entire life and they are a part of a pretty darn huge extended family.We all figured out that we are going to have a decoration and party favor making party a few days after I get home. Basically a lot of the babysitting coop will be over at my house (because we have enough room, although my cat will not be too pleased) to make a tons of crafts to make my wedding have a nice homemade touch, so it does not have the cookie cutter wedding effect. I am more than prepared to try extremely hard to make this wedding work and be perfect for me.

Egor’s (my fiance) mom Irina came by today to check up on me as well as help plan out the wedding with my mom, although Irina confessed that she has absolutely no experience in planning a wedding. Neither am I so that is not considered a bad thing whatsoever. I am actually enjoying planning this wedding. I know how to navigate the computer very well, and with the help of Pinterest it is becoming an easier and easier task. I can find literally anything I want to on the internet, but that does have its challenges because there are so many things to choose from that I get confused and have to choose between two awesome items or designs when I really want both. Yeah, that is a true First World Problem. But it has also made it possible for me to shop without leaving the hospital, because lets be honest, the wedding would not be as far without Pinterest and looking up ideas and dresses online.

At around 3:15, Eden and her mom Rebecca came by to spoil me with mashed potatoes and homemade friend chicken. Yum. As much as I was not hungry, I still wanted to eat more but would not risk having an upset stomach. Irina also brought some Russian food, made with lentils, turkey meat, zucchini, and other yummy items which we used as gravy for Eden’s mashed potatoes.

We all sat around and joked about funny stories for quite a while, then my mom and Irina started to find some poems and vows for the wedding. They were actually pretty darn successful if you were to ask me. I had totally forgotten about the vows and traditions for the ceremony and luckily my mom was on top of that!

Within thirty minutes of everyone arriving I had some surprise guests! Kevin (my bridesman and best friend since about 1st grade) and his brother Ryan (whom I have known since he was running around in diapers) decided to come visit me without telling me. This was a pleasant surprise as I have not seen them in quite a while, too bad I was extremely tired from all of the planning that I have been doing and from the radiation. At 5:30 I ordered to have Ativan from my nurse Robyn because I was getting tired and kind of nauseous, so this would allow me to fall asleep and take a nap. Right as I was getting the medicine, Irina, Eden, Rebecca, and my mom left to go back home. Kevin, Ryan, and my dad stayed behind while I napped because we are so comfortable around each other and do not feel the need to always entertain them. Eventually my dad kicked them out so I could continue to sleep without disturbance.

Since then, I woke up and am currently watching The Next Food Network Star, as I cannot get enough of food shows! Robyn came into my room today wearing a blonde mustache, so my dad and I immediately starting cracking up. This is the sort of thing that I love about staying in this hospital- everyone is so comfortable with each other and know how to have fun. Robyn even gave me a handful of mustaches to wear with my friends, nothing could be more perfect for our personalities!

Well, now I am going to get off and eat a huge cupcake before I go to bed!

Today I Feel… Bridal

I was originally going to post this last night, and I had written what I believe to have been an amazing post- but the internet here in the hospital is kind of shoddy and did not save any drafts whatsoever and when I went to submit my post, it could not be posted because there was still no internet. I was very upset at the time and am still not too happy about having to remember what I had written yesterday and rewrite it again. So, here it goes!
With my last post being about surprises, it took me about 5 hours to write that one blog, and here is why: I started it at 11 at night after being put on all of my night pills and infusions which make me incredibly tired- but I felt compelled to write an incredibly long post because I had a lot to tell. Anyways, I kept on falling asleep and waking back up (all the lights were still on) whenever my night nurse would come in to check my vital signs or do whatever else it is they have to do at night. So I would wake up, write quite a few more lines down, and then fall back asleep. This continued until about 4 in the morning until I decided to finally buckle down and finish it once and for all. Then I finally got to go to sleep and hoped that I would get enough rest for my busy day to come.

When I woke up I was incredibly tired. I had to be up and ready by 11am in order to be picked up by the ambulance to travel 30 minutes to my radiation team. I woke up at about 9, which seems to be enough time to get ready and go, but I got very distracted when I had to check my Facebook, Snapchat, Instagram, and FML like I do every single morning as part of my routine. I also had to eat some breakfast, and I eat incredibly slow now in the hospital just to make sure that I do not get sick off of inhaling something in the wrong pipe. Then came time to take my shower. Now, this is no ordinary shower that most people have probably have had the privilege to experience it. I basically have to wash my hair in the sink and then use these warm, wet wipes to “wash” down my body. I have to say that nothing can beat a shower at home.

So when 11am came, I was greeted by my EMTs for the day and I was incredibly relieved that they were not the same EMTs that I had for the last two days. They had been really impersonal and preferred to  talk to each other rather than the women they had to transport (DeAngela has ridden with me to my radiation appointments every day without fail). The undesirable EMTs also decided that it would be fun to run over a center divide right before going to the radiation center to save time and hopefully get there on time, although I do not understand the logistics of it, and we were even early for the appointment so the whole ruse was for nothing. Also, they know that they are dealing with a terminally ill patient who has quite a bit of pain, enough so I have a pain pump. Not to mention that having radiation on my organs makes me more nauseous, so what they did was entirely insensitive. They even requested me for a second day and I had no clue that I would be stuck with them again, so needless to say I wasn’t pleased. But I was so relieved when I got my new EMTs (who had apparently taken me on last Friday or Monday). They were much nicer and we could talk a lot with them.

Radiation went smoothly as usual, and I absolutely adore my radiologists, although I think I already said that… I had to take some xrays too of where they were radiating and my radiologist Ben was able to roughly sketch where I was getting my radiation- seems to be mostly a lot of my left lung and heart.

When I came back to the hospital after radiation I was just plain pooped. I could not even take a nap because I had a lot of my best friends coming over to hang out and watch movies. The people who came to visit were: Susette (my best friend as well as one of my bridesmaids), Eden (my ex-chemo buddy and also a bridesmaid), DeAngela (my best friend as well as my maid of honor), Nicole (an ex-teammate from the Gators and whom I competed against in college swim), Morgan and Stephanie McKibben (members of the babysitting coop whom I have known for many years). Susette and DeAngela (as well as my dad) stayed and watched movies with me, which included the scary movie Mama. I am a scary movie junkie, so I have watched most of the classic scary movies that everyone has seen and I have seen more of the very crappy/ almost funny because they are so bad. So naturally I was excited when it came to watching Mama. At one point, DeAngela got so scared and startled that she jumped up and screamed really loudly and scared my nurse, Robyn, who was in my room at the time. Robyn also screamed and jumped, so I was surprised that she did not drop any of the items that she had been carrying. My dad, Susette, and I all laughed so hard that I think we were crying. It was just the funniest thing to me.

Then Susette had to leave and a little while later DeAngela’s wrestling teammate from Kentucky (who just happens to live nearby here in Sac) came by and watched the rest of Mama with us and hung out a while after it had finished. Grant is funny and is not awkward around me or my dad- and my dad can be pretty intimidating with my dad’s different, but amazing sense of humor.

Speaking of my dad, he has been awesome through this whole process. He loves to hang out with me whether it is just walking around the park, swimming, or watching tv- which is normally what we do. We share the love of food and swimming and can be found constantly watching Food Network and the Discovery Channel. He always knows how to make me smile and how to encourage me through my hard times, but then he also knows how to bring me back down to earth and tells me things realistically. That is one thing I am very thankful about, he does not have to sugarcoat things so I know that whatever he is telling me is the truth. I love my dad.

Oh, and why was I feeling so bridal? I had on a white tank top with silver jewels on it that spelled out “Bride” given to me by my cousin. It is a pretty awesome shirt, and I felt very bridal wearing it.

So yesterday was a very good day, and I will probably post later tonight with more news.

Full of Surprises

My day was full of surprises- both the bad and the good surprises.

This morning, Summer Sanders blessed me with her appearance and gave me what my heart had desired: a breakfast sandwich with eggs, sausage, and cheese. You bet it was an amazing sandwich. She then said goodbye as she was going to take her daughter to horse back riding lessons- which is so cool and fun in my book!

After Summer left, I was barraged by basically my whole dad’s side of the family. Ok not barraged, and not everyone was there, but it was a surprisingly big group of people. My grandma Joyce, grandpa Gene, aunt Susan, cousin Anna, and cousin Kristen. They all wished to see how I was doing, since it is hard for them all to get out together considering the age of my grandparents. They are also coming from 1 1/2 hours away, and that can be tough on anyone’s body, nevertheless they are 86 years of age.

My family (plus DeAngela) talked for about half an hour before I had to be whisked away on a gurney to get me on an ambulance so I could get radiation. Seems like a lot of hassle just to go from on place to another? It totally is. However, since I am in the hospital’s care, I cannot simply drive myself to get radiation. I was so not impressed by the EMTs taking care of me. I had them two days in a row and I was dreading it. They were boring and hardly even talked to me or my best friend, as they would rather chat in their own company. The ambulance ride is about 40 minutes, and that is a boring amount of time when you do not have anything to do in the very bouncy ambulance, especially when the ambulance driver loves to ride over curbs to get to places earlier. Yeah, did not sit well with my stomach that gets upset over radiation to begin with.

Luckily, I love my radiologists and they always manage to make me feel light and happy with all of their jokey mannerisms. They do not have the fake happiness and friendliness about them, they are truly enjoyable to be around. I am willing to take the extra drive just to hang out with this group of people for the ten minutes it takes to get irradiated.

After I am back I was completely exhausted, I took 1 mg Ativan to ease my stomach and also make me feel sleepy so I could relax for a while. My family was still there when I came back, but I explained that I was just pooped and not feeling good,so they left about 10 minutes after I came back from radiation.

Oh, I forgot to mention that my aunt brought me a wedding ring that she had as a spare just laying around the house. Also, the ring is in my perfect size of 5.5, has a cute kind of big diamond on top, and it is gold- the same color that my fiance will be getting me. I also chose the band for Egor as well. If you asked me or my mom, it is perfect. I still remember the style of ring he liked from at least one year ago from a casual conversation we had.

I had some friends from high school come visit me as well. Tyler, Troy, Casey, and then Sean came. We got to reminisce about who we were in high school and also had to do our usual gossip where we touched on the subject of an old “best friend” of mine who did not exactly prove himself to be a friend at all when I was diagnosed the first time. Now that I have been given a death sentence, he wants to be a part of my support system and be a friend if mine. This offended me to no end, because there was no way in hell that I was going to let him back in my life after all of the things he put me through in high school when we were friends (which, when looking back, was not a smart move on my part to begin with) so there was no chance for him ever seeing me again, I refuse to deal with the amount of drama that just seems to follow him like a stench that just won’t go away,

Anyways, after my high school friends left, I was left talking to my aunt on my mother’s side of the family. I have been increasingly emotional, which I suppose is normal considering my condition. It is weird for me because I like to keep my feelings locked down, deep down in order to keep people from seeing me cry. In fact, my sob looks better than my regular cry.

Anyways, back to the conversation I was having with my aunt Cathy. Somehow we got on the subject of love. It was brought up that I have in fact never been in love, even though it was something I want so dearly. I want to be in love so badly. I have loved people before and do love people, but I need to add some romance to it. I love Egor, my fiance, but I am not in love with him. I desperately wish that I will fall in love with him and that he accepts that. I have not talked to him about it so I am a little scared. We have agreed to snuggling, the kiss during the wedding ceremony, and holding hands.I do want more than that but I have to respect his wishes, and he was the one who said yes to marrying me. Literally seconds after I found out that I had six months to live (at the time, since then i have been given less time to roam the earth, and yet here I am staying up super late to write this blog entry) so I was so overcome with emotions that DeAngela had to make some calls for me, including to my mother and father, grandparents on both sides of the family, and then of course, Egor was contacted. DeAngela had the pleasure of asking if Egor would marry me, given the circumstances that I would not live very much longer, so Egor, naturally, being the man that he is, said “of course.” Yes, ladies and gentlemen, this is how we got engaged. Not the most exciting story to some, but for me, I was thinking that I was taking off the most important item from my bucket list- getting married. To me, it was also so brave of Egor to take on the role of being my husband- especially knowing that I would not be around for much longer. It is so much more than your average best friend kind of thing, it will be the best day of my life, hands down,

I would write more and could, but I keep falling asleep at the keyboard. So goodnight!

Planning for My Wedding

Being married is a very important part of my bucket list and it will be fulfilled on July 6th.

So far, I have said “Yes” to my dress, it is gorgeous but I will keep the details a surprise until I make my debut. I tried on a total of six dresses in the Physical Therapy room of the hospital because it was big enough for my large array of people who wanted to accompany me to pick out my dress. With me I had: my mom, a family friend Cheryl, the two workers from David’s Bridal, my future mother-in-law Irina, and none other than Olympic Gold Swimmer Summer Sanders. A few of my nurses wandered in when they had time, such as Robyn and Katya, and even my Dr. Sonali watched me find my dream dress. The room was full of excitement beaming from everyone. It is not every day that one tries on wedding dresses in a pediatric hospital. When I tried on my last dress (which I chose for last because I thought it would be my favorite) I just knew it was “the one”. Once you find that dress, you do not want to try on any other dresses because you already know that you have found the dress you have been waiting for. I was even able to try on the six dresses with no oxygen, which really tired me out, but I felt accomplished to become detached from tubes for a while.

For my wedding we also have the cake under way, which I designed to be beachy- that is all the details that I will give out. The flowers have also been picked out, but I have not seen them as I have not left the hospital since I arrived a week ago. I did give my mom an idea of what I want for the flowers, but It will be a surprise for even me. We have decided on the catering, which will be some really tasty Mexican food. We have also made some centerpieces which look fantastic to me, a lot of the decorations are going to be home made because in my opinion they end up looking better than store bought decorations, and are more unique as well as less expensive. Yay for a little hard work!

A few hours after I had chosen my dream dress, David’s Bridal staff came back with a seamstress (someone who does alterations) to make my dress fit me like I had imagined it to. Considering that I am much bigger on the top than on the bottom, it is because I have gigantic swimmer shoulders and a teeny tiny, almost non-existent womanly waist. They also made it so that the top was more of a sweetheart neckline and that I had more of what I called a “booty pop”. I also got to try some headbands because I am not going to be wearing a veil, that is just not my style. I will be trying on some more at my second fitting tomorrow. Everything is moving so fast, I am impressed. It shows that all these people truly care about me and want to get my dream wedding done with such a short time limit of three weeks. 

My friend Meagan came and visited me again, just as she had the night before and we really got to bond some more, and we decided that on Friday and Saturday we (along with Susette) will figure out what songs are going to be played on my wedding night, other than the piano that my talented cousin Kristen will be performing for my ceremony.

I also found out that my swim team is having a little get together honoring me on June 28th, which is the day after I get out of the hospital. I am staying in the hospital until Thursday the 27th, and the bonfire get together was scheduled around when I could get out of the hospital, so I am very thankful for all of the people who are supporting me and loving me, and also comforting me through this adventure.

Remember, just because I am dying, doesn’t mean that I cannot live my life out to the fullest every day. I think of all the good things in life, I think of how much I love my parents, my teammates, my friends, my animals (mostly Panda), my grandparents, my other family, my teammates, my nurses and my doctors. I also think about how all of the people who I suggested above truly care about me and love me. It always fills my heart with joy when people say that they want to visit me in the hospital, especially since I am not offering out invitations to come out or asking anyone to come, it is more of just an open invitation that anyone at any time can come visit me from anywhere. I have gotten some beautiful flowers from my friend and ex-classmate Kristin Dong gave me the most beautiful flowers that I have ever seen from Vera Wang. (I did not even know that Vera Wang made flowers! Classy!) I also have various other flowers given from friends of family and the baby sitting coop from back in the day. I have been given a blanket from my future mother-in-law as well, and it is extremely soft. I received a cat hanging on a balloon stating “It’s a Boy!” because in the hospital they did not sell any balloons stating “Congrats on Getting Engaged!” which I thought it was so funny. The cat stuffed animal was chosen because it looks like my baby Panda, and I miss him so much. This was from the Melgoza family. I also have another stuffed animal from someone who’s name escapes me, but it is a cute chocolate lab.

Even though I am dying, I am not sitting in a cave being depressed. I am doing as many things as I can do from the hospital and being peppy and trying to talk to everyone and strike up nice conversations, because you never know if you might brighten up someone’s day. I live every day like it is my last, because last is right around the corner for me, but I stay positive, always. =]