Roses And Thorns

I never really admired the rain when I was a child. I think it's because I always had the mentality that rainy days meant staying indoors...which no child in the 90's wanted to do. The sky would go grey and the possibility of a power outage would linger in the air. We'd get out the board games and books to pass the time as the rain started to pour down. The worst was when kids would go to school looking forward to recess only to be told that it was cancelled due to the weather. It was always such a downer for me growing up.

It wasn't until I hit my late teens that I started to truly cherish the rain. Nowadays I love everything about it. The smell of the air just as it starts to pitter-patter and the sound of rolling thunder in the distance. The joy of stepping outside barefoot in the pouring rain as you walk around in the puddles...rain boots were never my style. And as your hair starts dripping to the point when you look like you're happy crying, you just start dancing like no one's watching!

I spent most of today running errands, getting my blood work done for my biopsy, and paying bills. The moment I got home and stepped out of the car I looked up and the clouds were sweeping in. The smell of the oncoming storm was overwhelming. My doctor would probably kill me for what I did next and my neighbors probably thought I was crazy...but I took the opportunity that nature gave and decided to have some fun. I splashed through the puddles and ran up and down the driveway. I spun in circles while laughing ridiculously. I kinda felt like Liesl from The Sound Of Music dancing in the rain.

Maybe it's because I'm a spontaneous extrovert. Maybe it's because I look for adventure when my life gives me troubles. Or maybe I just like to rebel at what life gives me and to make it my own. Lately my perspective has definitely grown in the fact that I try to notice the little victories and blessings every moment of every day. Don't get me wrong...there are definitely moments where I feel low, alone, and I go through a box of tissues in the span of a day. There are days when I feel trapped like the younger me on a dismal rainy day. But every rainy day has it's perks and there's always something to make you smile and be thankful for.

I suggest we all take a moment to look at our lives and appreciate what we have. A good friend of mine came up with a game called Roses And Thorns. The roses represent the good experiences and the thorns are the bad. For every thorn you say that happened to you today, you have to come up with two roses. By doing this kind of reflection every day, we can look back and see that the day wasn't wasted. You might be surprised to find how few thorns there are compared to roses. Because seriously...who wants a bouquet of thorns?
                           
So the next time it rains and you are stuck inside...or the next time you feel like there was no point to the day...or you feel low in general...change it! Make today your day! Find something to do that will bring you joy despite the gloom. Embrace the rain clouds you've been given and make the best of it. And at the end of the day, count your roses among the thorns. I guarantee you'll look back and smile.

"And rain...will make the flowers grow!" -Eponine from Les Miserables

Quite The Setback

I don't really know how to start this post besides saying I didn't see this coming. I mean I had my worries that my cancer would come back farther down the line, but I don't think anything could have prepared me for the news I received after this PET scan I had at the beginning of the week. This scan was supposed to be the green light towards my bone marrow transplant. It was supposed to show me either in remission or on the way to remission. Sadly that wasn't the case for me. Despite the immunotherapy, which is supposed to be highly effective for cases like me, it isn't working to the highest degree. It's successfully killing off the cancer cells that showed up at the beginning of the year, but at the same time new progressions of cancer are forming during my treatment. I'm in that 1% of unsolved cases again. It's beginning to appear obvious that my body is seriously trying to kill me.

My oncologist has no explanation for why this is happening and I have to go in for my THIRD neck lymph node biopsy in a couple weeks. This biopsy is to see if my cancer has mutated into some kind of hybrid which can happen in rare cases of my immunotherapy treatment. In the meantime I continue to do the same treatment since it's not killing me and partially working. After the biopsy my doctor will determine what treatment to proceed with...whether it's a different drug, a mix of my previous chemo and immunotherapy, a five day infusion of a harsher chemo, or a clinical trial and hope for the best. At the moment my bone marrow transplant is now postponed until who knows when since you can't get a transplant until you are in remission. I had just started getting my head around the transplant process and had the mentality of "well this time next year it will all be over with"....now I'm back at square one.

I spent the first day after receiving this news just bawling my eyes out. Now I'm going through a stage of anger and disappointment with my body. I've already wasted almost two years to this curse of an illness...while everyone around me is going on with their lives (finishing school, working, getting married, having families) I'm stuck in some sort of limbo. All the while everyone is giving me the broken record of "stay positive" and "you'll get better" but after hearing this twice and getting disappointed both times, I find it really hard to let that sink in again. I hate feeling defeated and being forced to pick myself up again. So I'm not going to look at this like I'm definitely going to be cured. Don't get me wrong, I want to be in remission, but I can no longer look to the future like I had been. This is now a war that needs to be taken one day at a time until I win...and I will win.

So now I'm making weekly plan sheets where I plan out each day with what I can do in terms of my energy. Most of the days I will spend studying, reading, watching documentaries, compose music, and learning everything I can. If I can't go back to school any time soon then I'll study at home. And even though my social life is diminishing slowly, I'll do what I can to stay upbeat. I will try to get more involved with my support group and other activities they can offer while I'm still feeling ok. I even found a children's hospice not far from town that I am looking to volunteer at and hand out my Happy Bags. I might even bring my ukulele and plunk out some tunes. Haha! My oncologist told me that not just being positive helps defeat cancer but having a sense of humor is key. If I can keep my attitude up and make others smile, laugh, or have a good time then that can help them AND me. I need to maintain this and as long as I do, cancer can't get the best of me. And as I've said before, my motto in life is a quote by Charlie Chaplin...."A day without laughter is a day wasted." Let's not waste any day we have. If you spread joy then you reap joy. Just something I think we can all work on during such struggling times.

Running Out Of Time

While I have a moment to step away from the whirlwind of events I've crammed into these next few days, I've decided to breathe and write a quick little thing about the past week. On Friday, the first of July, I hit my absolute rock bottom. It started off as a pleasant day...I was making plans for the 4th of July (spending the day at Mt. Vernon) and for the rest of the week. I knew I'd be feeling close to normal (health-wise) and I wanted to go out and do things with friends while I still could. I woke up that day thinking 'June was a mess of emotions and since it's the first of the month I'm going to make the best of what I have!'...I felt ready to take on this month's challenges...or so I thought.

I then proceeded to take a shower and it took only about a minute for me to realize the horrible mess accumulating at the drain stopper. I was losing my hair in clumps. At first I was confused. I didn't see this coming until I started my transplant, to which I was planning on buzzing it when the time came closer. So there I am standing in the shower, stunned at the muppet forming at my feet. All I could do was start to sob...uncontrollably. No one could have prepared me for this, especially since I was told that there was a 20% chance of "hair thinning" with the immunotherapy...no one said hair LOSS.

I spent the entire day in tears and utterly traumatized. A lot of what happened that day is a blur to be honest. I called up a very close friend and former co-worker from the salon I used to work at, and thankfully she was able to see me first thing the next day to give me a quick pixie cut. I cannot thank her enough for seeing me especially since if she hadn't, I would have ended up shearing off my own hair with a pair of scissors my mom owns...and that wouldn't have gone over too well. But my friend gave me my confidence back and even though I'm not crazy about my hair being so short, I've gotten several compliments, which is nice. Now I just gotta work the Anne Hathaway cut until I buzz it off completely for the transplant.

So there I was starting the new week off at the lowest I've felt in such a long time. To top it off, my 4th of July plans were immediately scratched because of the rainy weather and fireworks were cancelled. Instead my mom, who works at a really nice Hilton hotel, made plans with her boss to give me a getaway from the house. She got a room for me to stay in...but not just any room...A SUITE! I've never stayed in one so I felt quite pampered. It included a really nice shower, a giant TV (to which I got to watch My Big Fat Greek Wedding 2 and a marathon of Game of Thrones), free snacks and ginger ale in the pantry at the lobby, and a free breakfast. It was pretty awesome and I totally felt like Kevin in Home Alone 2.

Then plans started picking up again and the day after the holiday my friends (Alex and Matt) and I decided to take a holiday of our own and spend the entire day at Ocean City! The moment we started pulling up to the inlet I came up with the spontaneous idea of parasailing, and with little convincing, we decided to give it a go. I've always wanted to do it and figured now was the best time...and it was AMAZING!!!! We were up 600 ft with a beautiful view of everything! We were soaring for quite a while and got pictures to remember the event.

(I'm the one on the right)

Afterwards we went swimming in the ocean, despite it being FREEZING. By the time we decided to hit the boardwalk I was covered in sand due to the intense waves. Haha! Then we got some munchies and hit the arcade. I wasn't expecting to do very much there as my energy was starting to diminish...but then I saw it. The game with my name written on it. PIANO KEYS. You sit down and it's essentially DDR but with a piano keyboard consisting of 4 keys. And (not to brag but) I swept the leaderboard 1st through 6th. Not only that but I got 953 tickets out of it! I was completely overwhelmed with joy and giddiness. I felt so proud turning in my tickets for a little seashell trinket box and one lemonhead.

The day came to a close and we headed home after that. It was so much fun that we're already planning our next trip for when I'm fully recovered and cancer-free. Then Thursday I met up with my dear friend Natasha for a lovely little outing at the Rio (a little shopping outlet and park). We were wandering in and out of shops when Natasha mentioned that the movie 'The Secret Life of Pets' came out the next day...and then DING! The spontaneous light bulb went off again. I suggested we hang out the following day and see the movie...to which we did and I'm so glad! Not only a great movie but I was really happy to have another day to spend with her. You are still the Hoops to my Yoyo! lol!!

So here I am after the movie and looking back on the last 7 days and all I can say is WOW. I crammed so much in one week and even marked something off my bucket list. Next week is going to be appointment after appointment at the doctors...and I'll probably be getting news about my transplant process. I feel like I'm running out of time...time to hang out with people....time for those long walks....time for freedom. All of that will be gone when I'm contained in my hospital room facing only God knows what kind of pains and struggles. So until the day comes where I have to start packing my stuff up and leave for Baltimore, I'll try to stay active and keep writing in my blog as often as I can. I'll do as much as I can with the time I have (in moderation with my health of course) and stay upbeat. It's all I can do.

"How do you write like tomorrow won't arrive? How do you write like you need it to survive? How do you write every second you're alive?" -Hamilton the Musical

Little Distractions

Hey peeps! Sorry I've taken a little longer to write something on here. I even meant for this post to be up yesterday, but with everything going on in the news about the Brexit vote, I got so consumed and didn't get around to writing anything. Needless to say, I was quite upset with the turnout but I'm not gonna spend time talking about politics on my blog. I also took some time for myself last week by taking a tiny beach trip to visit a close family friend with my sister. But I'm back now and just completed what is either my last or second to last treatment of immunotherapy (which will be determined on the outcome of my next PET scan in 3 weeks). So before I become totally zombified by fatigue next week, I decided now would be the best time to make a new blogpost.

With being past the halfway point of my immunotherapy and with my transplant coming up really soon, I've been pretty emotionally stressed and my anxiety has been building up on the inside. I don't have very many people I talk to about my fears since I don't really know how to express it to people who don't know what I'm going through. Not to mention my first instinct is to bottle it up. So by containing my struggles, I've been having an overload of thoughts.

Because of this, I've been trying to distract my mind of the stuff that is to come. I made sure to make a trip to the beach last week, because I knew it would be one of the few opportunities this year before my transplant and that I seriously needed it. I've had so much stress and emotions bottled up in my head that I needed to just get rid of and I manage to do that best at the beach. I spent a few hours just sitting in the sand watching the waves coming in...just hypnotized. I tuned everything out except for the sound of the waves and the smell of the ocean breeze. It was enough to bring my mind to halt and I quickly found myself in a blissful state of meditation. I managed to clear my mind and I noticed my stress levels dying down. After that I took a long walk along the beach with my ipod (with the volume on low). Besides the rosy sunburn I managed to obtain despite putting sunscreen on twice, I actually thoroughly enjoyed my beach visit. I was just happy I was able to get that reset button for the year and it has put me in a better frame of mind for my upcoming transplant. There is definitely something therapeutic to a day at the beach.

Along with some arts and crafts, books, and movies...I've learned that it's also the little things that make for great distractions. This can be taking the longer way home in the car after running errands and enjoying the view. Or exploring a new path when going for a walk in the evening and then sitting down somewhere to watch the sun set. Or watch a video of Ellen Degeneres or James Corden (definitely been the ones to make me laugh a lot lately and great pick-me-ups). Or plunk out a few notes on the piano. Or write a letter to a friend. Or light a candle or two and listen to some good soundtrack music and just daydream a story. And when feeling very very low, sing something...even if it sounds bad, belt it!! Haha!

Sure I still have the fears about what is to come but by having these little moments for myself, I manage to minimize the fears and come to slowly accepting my situation. I've even started making preparations for what I will bring for my hospital stay. I have my embroidery and coloring books in a box. I have a new journal set aside for the two months I'll be in Baltimore. I have a set of books stacked to take with me that I've already begun to read (thank you Dana, Gregory, Tom, Tiffany, and Mom). I even spent a little of my work savings to get an instrument I've always wanted to play...I GOT A UKULELE!!! It's beautiful! It sounds so cheery and it's color is a mahogany shade....so naturally I had to name it after the Hunger Games character Effie. ;) I'm hoping since it's so compact I can bring it with me to the hospital and maybe it will keep my spirits up while I'm there.

So that's pretty much the latest with me. I will probably post again for the 4th of July as I have plans on going out with my mom that day and to see the fireworks. I'll be taking my camera with me so I'll be sure to post pictures of that adventure. I'll also be tending to my Happy Bags project now that I officially got all the materials and goodies I need for them. I will post pics of them here when they are all done (there's a lot of them). I'm hoping I can take them to Johns Hopkins this coming up month when I go in for my next consultation...even if I can't personally deliver them to all the kids, I know I will be brightening someone's day. After receiving so much support myself from nurses, doctors, support groups, family and friends...I just want to give back so others can experience that love even from just another cancer patient. And with that, I'll leave this blogpost with a happy note.

Drawing On Strength

Hey peeps! So I just finished my second immunotherapy treatment yesterday. All went well and since they monitored me the first time, they didn't need to stick around long and I got to leave right after the needle was out which was nice. Though I have acquired my next symptom...nausea. Although very very mild, it still is very triggering any time anyone so much as mentions food or shows me a plate....my appetite is totally gone and I keep getting small waves of feeling like I'm gonna be sick. But despite that and the constant fatigue that has been plaguing me since my first treatment, I decided it's time I post an update on here. So hello again!

Since my last post (which I apologize for being about two weeks ago) I've been dealing with an emotional roller coaster. It hasn't quite gone away yet as I had a minor meltdown even at my treatment yesterday. The fear keeps creeping in the back of my mind about the unexpected to come and the loneliness I'm going to have to endure. But I've been trying to keep my mind distracted on other things as much as possible. It's always been a challenge for me when people say "go to your happy place" because I never really established one particular place in my head. I also have difficulty focusing on a specific spot in the room because then that just makes thoughts move through my mind like bullet trains. Sometimes instead I try to look at pictures and ask myself things like "where/who is this? what was this picture taken? who's taking the picture? what would I do if I was there?...etc"

However this was impossible this past week as I went into the dentist again to get some cavities filled. It's mandatory to do all dental work before you go in for a bone marrow transplant...I guess to minimize any chance of infection. So there I was lying back in the chair facing the ceiling waiting for my mouth to go numb. I can't exactly hold up a picture to my face to distract myself from the drill so instead I asked if I could put in my earbuds and listen to some music on my ipod. I got the ok and was told to just close my eyes and relax. I didn't exactly go to a "happy place" but when I turned on my ipod, I realized the last thing I was listening to was movie soundtracks...and I had an epiphany.

All throughout my childhood I did competitive figure skating. I used to pick my own pieces of music to skate to and they were always from movie soundtracks. I skated to everything from Pirates of the Caribbean, to Harry Potter, to Titanic, even the musical Phantom of the Opera and more. Every time my music would start I would envision myself as a character in that movie/musical and to me it wasn't just a skating program...it became a performance. Since my skating days, I've still embraced soundtracks and listen to them when I'm alone. Sometimes I find myself choreographing skating routines or act out scenes from that movie in my head for fun.

(This is me skating to Titanic in 2006)

But that day at the dentist was a bit different. The movie soundtrack that came on was from a Marvel superhero movie (specifically one of the X-men movies). With my eyes closed, I found myself not choreographing something, but seeing one of the characters in my head...Professor X (James McAvoy version although I have nothing against Patrick Stewart). He told me to make a list in my mind of every X-men superhero I could draw strength from and look up to. He told me with each one to really invision them and think of examples of moments where they showed that strength. So as the music started intensifying in my ears and the dentist started to drill, I went to work.

1. Mystique - for not being afraid to be herself
   
2. Magneto - for his passion in standing up for what he believes in (even if his views are sometimes in the wrong)
   
3. Beast - for accepting what has been done to him and moving forward with a positive light
   
4. Wolverine - despite having sass and a temper, he always puts those he loves first
   
5. Nightcrawler - for always holding true to his faith
   
6. Deadpool - HE'S A FREAKIN CANCER SURVIVOR AND KICKS BUTT!
   
7. Professor X - for overcoming his fears in order to do the right thing and going above and beyond to help others like himself
   

Those are just a few of the ones I listed. My list went so long that by the time I finished I was told the procedure was over and I could get ready to go. When I left and got in my car I finally realized...this could be my way with coping. With the hundreds of soundtracks I have on my ipod, anytime I grow fearful of something, I can draw on strength of my heroes/favorite characters and it will be a lingering distraction and a way to cope with my fear. I don't need a happy place to run away from my problems...what I need are people I can look up to in order to face these difficult times that are approaching. I got this!

Frozen In Time

Most people know a lot of the ways cancer can interrupt someone's life. As a child, it makes going to school and making friends extremely difficult. As a parent, it makes raising children and working almost impossible depending on the severity of the cancer. As an elderly person, it can sometimes send your retirement savings out the door and survival rates decrease with age. But the one thing that people don't really seem to get is you feel like your life has completely stopped. Everything you planned to do is either on hold or forgotten. You miss out on the opportunities that healthy people take for granted. And for someone who is 23 years old, the time when everyone says is the prime of your life, it's very hard to cope with.

I find that every time I reconnect or hang out with someone I feel so happy to see them and get all excited with the things going on in their life. Whether it's because they are graduating college, getting married, starting on their dream careers...and then they ask me 'what's new?' and then this little seed of jealousy begins to form. I begin to remember that I'm not working, not finishing school, don't really have a social life let alone a dating life...I feel almost like a failure because I haven't truly accomplished what I wanted to do in my life. My head just screams IT'S NOT FAIR. 

All these things I was hoping to do, I can't because of this mutation in my body. I kind of wish cancer was a mutation where you get super awesome skills like the X-men movies make it out to be. Then I wouldn't be complaining and would probably sign up to work for some cool secret mission.

A friend of mine once sent me a post about this feeling of isolation. It said cancer is like a kidnapping. It takes you away from the comfort and joys of life. It forces you to do things no person should have to endure. It messes with you psychologically and sticks with you for the rest of your life. It's true! Cancer is a kidnapping! 

And during that kidnapping it feels like you are stuck in a glass room forced to watch everyone else move on with their lives. The people outside of that room don't really know how to react. Some of them will stay close by...some will ask "what can I do to get you out?" (when we all know there isn't anything to be done except treatment)....and then there are the many who will wave and walk on by.

The ones who stick around are the ones who will be there for you when the glass walls come down and remission begins. The ones who say "what can I do?" are the ones who will stay in touch and be that extra wave of support. And the ones who walk by....well I've learned, they are the ones who come and go in our lives. You can't truly blame them because they have their own lives to lead....but this is where that seed of jealousy begins. It's human error to have jealousy...I for one am truly guilty of it. I experience it all too often when I'm on social media and see the amazing experiences my friends have. I know it's wrong and I know people have their own demons and struggles. It's just something I will have to overcome.

So while my life is frozen in time...what can I do? Well, I decided to make a bucket list. Bucket lists don't have to be for the terminally ill. They are a great way of brainstorming the things you want to do with your life and also to think of goals you can achieve in the meantime. For example, the top of my list of things to do is to go visit Harry Potter World in Florida....I know...I'm such a dork. 

But the next thing on my list is to watch the AFI Top 100 movie list. Last year I managed to get through half, and I still have many more to look forward to enjoying. Then I follow that with a big dream like meet celebrity like Ellen Degeneres or travel to Scotland....followed by composing a piece of music or reading all of Jane Austen's novels. I alternate between the big dreams and the currently doable dreams. There are quite a few things on my list, but it's a motivation and it truly makes the days have purpose. It's the little things that truly make life worth living and it's the little things that get us through the rough spots.

Not Alone

Before I begin this post, I'd like to apologize ahead of time if my thoughts don't sound too coherent. This is mainly because I am still physically and mentally drained from my recent immunotherapy treatment. I will try my best to convey my thoughts in either words or my lovely little gifs. Haha!

As I stated in my last post I completed my first immunotherapy treatment. It took hardly any time at all and thankfully I had no adverse reactions. Little did I know I was dealing with a raging storm on the rise. 

Unlike standard chemotherapy which is a series of toxic drugs that kill both cancerous and healthy cells, immunotherapy specifically targets your immune system and reprograms it to kill only the cancer cells. In order for this to work, your body normally reacts as if you got a really bad case of the flu since your body is working double time at killing cancer cells. Luckily the only "flu-like" symptom I've experienced is fatigue...but WOW did it hit me like a giant slap in the face.

When Monday came around I went for a dental cleaning....apparently it's mandatory I get checked out before my transplant. As soon as I came home from that I seemed to have passed out on the bed and slept through the entire day. I woke up around 1 am when my mother came home and she asked why I was awake. I told her my lack of activities today and she asked how I was going to sleep through the night. I simply responded "like this!" and passed out again. 

I slept through the whole night and woke up at 11am just in time to get ready for my first follow up with my oncologist. I was so out of it that morning that I came to my appointment with some major bedhead and had a giant sweater on in 75 degree weather to cover up my embarrassing sunburn...I was not in the mood for a lecture on sunscreen. My doctor proceeded to tell me that fatigue is extremely common and I should be feeling better by the end of the week. Then she said something to me that caught me totally off guard....if all goes well, I only have 2 more infusions of my immunotherapy before I go in for my transplant process.

We're still looking at potentially mid to late August when I'll be entering the hospital...so soon. Everything seems to be happening so quickly especially since most days I've spent inside with not much to do (rainy weather and all). What's worse is I don't even want to stay cooped up in the house all day. I'm 23 and I want to go out, travel, meet new people, work, go back to school...MINGLE! When I explained this to my doctor she told me that it's very common to feel that way. She told me I should go to my "young adult" support group, but I don't even feel like I can connect with anyone there. I'm the only 20-something year old and everyone else in the group is in remission. Then there's the fact that I can't really hang out with my friends as much because most of them are graduating and moving on with their lives. I don't want to bother them with something they can't really understand. And the times when I'm actually invited out to places by friends, happens to be the time when my body feels so dead to the world that I apparently look like an extra from The Walking Dead...and I'm forced to turn it down.

Obviously this past week has been taking a very emotional toll on me. The fact that I'm going into this transplant without really knowing what will happen and with only my immediate family to visit me in the hospital when they have the chance...it's very hard to take in. But the thing keeping me going strong is actually this blog. I've received quite a bit of feedback from you all and it has prompted me to keep writing more. I've been able to reach out to people like me, and by enlightening them about my story, we share a comfort that we aren't alone. The joys of having technology are in abundance. And it's through technology that I will be able to communicate with people and mingle when I'm alone in a hospital room. I take comfort in that and feel confident I can get through it...even though I fear it. Knowing this, I feel prepared when taking on this transplant.

Every cancer story is different because everyone faces it in their own way...but no story should be taken lightly. Every cancer story is a trial and a hardship for not just the patient but everyone around them. It's just another reason why I decided to write this blog...not just to show the strength and experiences I have...but to also display the weaknesses and fears that a lot of other cancer fighters face. Some people may read this blog to come to the realization of what family members, friends, and peers who have cancer are going through...others may read it to know that they are not alone....because you aren't alone.

Not Alone (by Darren Criss)  <------ Listen to this!!