Wait For It

Well the results are back folks!!! 

I got an email from my oncologist at 11pm last night saying the pathology came back...and we're looking at the same Hogkin's Lymphoma which means...NO HYBRID!!!!

This is brilliant news because at least we know what we're working against and the outlook seems mostly clear. Considering I had taken an entire month to do my fertility treatment, there is the likely possibility that these new progressions actually formed during that time. So my oncologist sent my pathology report to a specialist at NCI for a second opinion...during which time I'm going to continue my immunotherapy treatment one more round. Then I repeat the PET scan next month to see if there is any decrease. I'm so relieved because if there is a decrease then I'll hopefully be in remission by the end of the year and start on the new chapter of this journey...the bone marrow transplant. Although that chapter is scary to think about, I'll be happy to get it done and over with so I can move on with my life.

As I've stated before in my blog, I'm kind of in this waiting cell as I'm fighting this curse. Everyone around me is going about moving on, forming families, achieving dreams, working, and going about life...and I'm on the sidelines watching. But as the character Aaron Burr in Hamilton states "If there's a reason I'm still alive...then I'm willing to wait for it"...if everything goes as planned and I'm in remission by the end of the year then I'll be one step closer to TRULY living again. Until then, I watch the hours pass while the list of things I want to do grows. I might feel very much alone and secluded right now as people in my life are moving away, but I know my time will come to move on and start a new, happier journey. I'm willing to wait and fight for that.

I'm beginning to realize why people call a bone marrow transplant a "rebirth". It's not because you have no hair or you have to build back your strength and immunity. It's because you are now relieved of the curse of cancer and can not only resume your life but start things over. I originally was majoring in theatre at college, but this cancer has put a GIANT perspective on life. I want to use my talents to help others who are in my current situation. If I am given the chance of a "rebirth" I will change my major to music therapy. It's not only a successful career option, compared to theatre, but it's something I would enjoy doing as I would be helping bring smiles to others in need.

There are also many other things I'm waiting to do. I want to go out and meet people. I want to travel and learn about the many worldly cultures. I want to try to make a difference with whatever I have left on this Earth. I want to eventually have a family of my own. All of these are things I'm willing to wait for. People say "patience is a virtue"...well cancer patients know that all too well. Whether it's waiting for a diagnosis, treatment to be done, or for that confirmation of remission...strength and patience are what we learn best from it all. And it's hard to come to terms with that especially when we feel weak, helpless, or alone...and that's why I form a list of reasons to keep fighting. Afterall...I'm the one thing in life I can control.

Inspiration I got for this post is from the amazing musical Hamilton...check out this beautiful song:

https://www.youtube.com/watch?v=ReTP6x_sDiM

A Little Bumpy Road

Well thankfully this week has come and gone. I had been dreading my neck lymph node biopsy on Wednesday. Although I was very tense and nervous about it, I tried to mentally prepare and go in with an attitude of "just go in, get it done, and get out"...but sadly many things went unexpectedly wrong.

To start off, my mother and I came up with the idea that we would stay at the Hilton that she works at the night before my procedure...so as to beat traffic in the early morning and instead drive the 5 minutes it takes to get from the hotel to the interventional radiology department. So the day before the biopsy, we signed into our room, unpacked, and as my mom set off for work downstairs, I decided to make a day of it and take the shuttle to Tysons Corner Mall. I don't have a whole lot of money to splurge but I did go to the bookstore there where I got 30% off the new Harry Potter book, then got two bath bombs from Lush and got an order of pizza to take back to the hotel for my mom and I to have for dinner. I also got to look around at most of the other stores there which was cool since I never really have the chance go to that mall.

Anyway, so I head back to have dinner, a shower, and started getting ready for tomorrow. Sadly the next day already started off on the wrong foot by waking up to find that I was soooo sore from the hotel bed as opposed to the bed at home. I rolled out of bed, put on some loose clothes, packed up and started heading over to the Kaiser building. When we got there, the first thing I had to do was bloodwork not only for the procedure but also for my upcoming immunotherapy treatment. Got that out of the way and started heading down to where the interventional radiology department was. There aren't that many Kaiser sites that have these special radiology rooms. They look like a mini (3 bed) ER used for doing biopsies and procedures while also using scans and ultrasounds (which is what they used on my neck to find the perfect spot to stick me...it's the safest way in my case).

We signed in at the front desk and then waited. My stomach was already begging for food and water but because I was going to be sedated, I wasn't allowed anything. An hour of playing solitaire on my itouch passed and they still hadn't called me back so I decided to check what the issue was. I asked the front desk and was told that the patients before me needed more time (perhaps something went wrong with them or they needed more time coming out of sedation?). I then asked how much longer it would be and I nearly burst out laughing at the response I got....ANOTHER HOUR.

By the time I was called back I had been waiting there for 2 hours and 10 minutes in a waiting room...I was absolutely appalled and it was at that time my mind started racing. The battle with anxiety was about to begin.

When the nurse called me back, I could already feel blood pressure beginning to rise and despite feeling so prepared last night, I started getting serious worries. I worried about how safe the procedure was, how sedated I would be, how much pain, etc....by the time they were about to start my IV I was already entering a full-fledged panic attack. My breathing was off and it was actually rather terrifying having all these thoughts going through my mind. It wasn't until they started kicking in the sedation that I started to settle down a bit. The procedure went as well as can be expected, though the numbing process felt like my neck was on fire. They stuck me 6 times for the needle biopsy to make sure they had a large enough sample. I was actually really grateful for the doctor performing the biopsy as he knew my concerns and walked me through it at a pace I could tolerate.

When it was all over and I managed to drink a little juice and some crackers, my mom decided to take me over to the Silver Diner down the street to get a bite. I got my usual lunch whenever I go there, a grilled cheese. I felt pretty ok despite a really really sore and swollen neck. I was told that once I got home I needed to put some ice on it every once in a while throughout the day. As we headed home I started to feel a little queasy though. I thought this was because the country roads were a bit bumpy. I tried to sleep through it and had some fresh air coming in, but the moment we entered my hometown, was just horrific terror. In the middle of a one lane street my mom had to stop as I threw open the car and said goodbye to my first meal of the day. Obviously the sedation hadn't completely wore off in time and it was very unsettling to my stomach...not to mention tear jerking to think of.

The rest of the day I spent lying down on a mountain of pillows to support my neck and ice pack. I sipped on some soup which was the only thing I could keep down, and napped through several hours. It was quite the bumpy road that I truly wish I never have to travel down again. I should have my results in next week and from there we decide on what to do in terms of my treatment plan. My bone marrow biopsy will still be the finish line...this is just the detour we have to make to get there. In the meantime I just had my 5th immunotherapy treatment and I can already feel the fatigue slapping me in the face. Oh well...it isn't gonna stop me from trying to be productive as much as I can...but for now....

zzzzzzzzzzzz

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!