Day 285 - The Unreachable Star

Hey folks...I’m not dead!

I’m sorry it’s been a while. I had intended to post several times, including when I reached the 6-month post-transplant point, but so much has happened and time has been very scarce. As I mentioned in my last post, I jumped right back into my studies the moment I got discharged from Baltimore, and it has seriously eaten away at the little free time I had to begin with. These past few months have been extremely eventful, to say the least, so bear with me as I try to summarize them and bring you all up to date.

On September 20th, I made it to the 6th-month mark, and my scans showed more unexpected improvement from the last! Although the cancer had been completely eradicated, my new immune system went above and beyond. The scar tissue that lingered inside after all of the many treatments I endured decreased significantly, to which my oncologist said that this is a very good sign. My blood type also switched over from my old type O Positive to what is my sister’s type, B Negative. My energy is slowly, but steadily, coming back to me. By the time I started my full load of courses on campus for the fall semester, the ringing in my ears had subsided, and I was even able to jog my first mile (something I didn’t even think would be possible so soon after a transplant).

At this time, I also started the re-vaccination process...ugh! Since my immune system was essentially the same as a newborn child’s, I had to get the whole nine yards of booster shots. For the first round of shots, I ended up getting a total of 7 shots (including my flu shot) all in one sitting. My takeaway from that experience is I now understand why children don’t like shots. If you ever find yourself getting a Hepatitis B shot, brace yourself...it’s not pleasant. Otherwise, despite the following two days being sore in the arms, I adjusted and distracted myself with my schoolwork.

In October, I decided to take a chance and audition for the theatre department's holiday showcase. I initially went in with absolutely no expectations, especially since it had been over 8 years since I auditioned for a theatrical performance. When I got my first neck biopsy in 2015, my vocal cords didn’t adjust well, and I still have trouble hitting certain notes that would normally sit easily in my range. However, I managed to blow my expectations out of the park when I got the courage to sing “If I Loved You” from the musical Carousel. I didn’t even believe how well I did until I listened to a snapchat recording my friend took of my audition. It felt so unreal...unreal to think how far I had come. It was as if everything suddenly fell into place at that moment...and for the first time in a very long time, I felt like me again. The reality set in especially after I got the email telling me I made it into the show, where I made many new friends. I had a blast singing Christmas songs to veterans and their families at the Walter Reed National Military Medical Center. It was as if the past three years were simply a nightmare I had woken up from.

Sadly, November proved to be incredibly challenging. In the midst of so much going on at school, rehearsals, and doctors appointments, I ended up having to take a whole week off from class due to a really nasty chest cold. It was a smack in the face because this should have been something I would have recovered from easily had my immune system not been so low. Instead, I lost my voice, was put on a TON of drugs, and could barely manage to leave my bed. At the same time, I was facing many family and home stresses that started to take a toll on my mental health. Survivors guilt also crept in, and I had this overwhelming and reoccurring feeling like I’m not supposed to be here...that I didn’t deserve to be here. I knew that I was not ok, but felt like I needed to put on a happy face and pretend that everything was ok. I funneled my pains and dark thoughts into a box in the back of my mind. It wasn't until December arrived, that the box imploded.

The holidays did not turn out how I had originally anticipated it to be like. Tensions at home were extremely high, and exam week was approaching. I thought that if I put all my focus and hard work into my studies, that all will be well in the end. I lost so many hours of sleep and worked ridiculously hard to make sure that I ended the semester with straight A’s. But as soon as my professors logged in every perfect grade, the world hit me in the face. The box in the back of my mind opened up and hell was unleashed. I felt trapped, afraid, and anxious about the future. Tiny things were triggering major panic attacks that would lead to multiple questions. What do I do with my life? Where do I go? Why am I still here? Will the cancer come back? How much borrowed time did I get from the years of treatment?  Is it even worth it?

Poison was seeping into my head...and it felt like I was very alone. Despite the major accomplishments I made, the satisfaction from them was not enough to overpower these attacks. However,  on December 17th I hit a lot point, and I decided to play some showtunes on a televised music station. The first song that came on was ‘The Impossible Dream” from Man of La Mancha...and I instantly felt at peace.

I was reminded of my grandmother, who used to repeatedly play that song over and over for me when I was little. It later dawned on me that, 8 years ago on this exact date, she had peacefully passed away. But what also occurred that same day, just last year, was the moment I made the decision to take on my 5th and final chemotherapy. Despite doctors and specialists telling me how risky it was and the likelihood of it not working, I chose to fight and persevere. Earlier this year, a miracle happened, and I was put into remission after only two rounds of this chemo and eventually given the green light for a bone marrow transplant. I knew in that moment that my grandmother was there with me that night. She was one of the reasons I fought so hard to live. She is one of the reasons I’m still here, because I “still strove with [my] last ounce of courage, to reach the unreachable star.”

The next day, I started to pick myself up again, and I set a plan in motion. I want 2019 to be my redemption year. I want this next year to be the year where I take back what cancer took from me. I’ve already started on this path with my studies, but I don’t want it to stop there. Because of cancer, I had to plant my feet in the ground and stay with my parents while those around me were moving on with their lives. Because of cancer, I was forced to abandon the workday world and limit my activity and interactions with others. Because of cancer, I gained a lot of weight, lost my hair, and inevitably became incredibly self-conscious. Because of cancer, I lost friends either from fear of associating with someone like me or from the disease itself. Well, you know what? I’m done sitting by and letting this cancer claim undeserved victories! 2019 is the year I take it all back! And I plan on using this platform to show just how far I'll fly!

"Here I go, and there's no turning back! My great adventure has begun! I may be small, but I've got giant plans to shine as brightly as the sun!!"

 -Jo March from Little Women the Musical

My Mind Holds The Key

Hey everyone...sorry for the brief hiatus. When I last posted on here I had great news from the PET scan. Nothing has really changed in that regard and I have another PET scan awaiting me this next month. It will be the determining factor on what course of treatments to take place for the rest of the year. If the scan shows that the chemo reaction has been improving, then I might just be able to forgo any clinical trial, possibly add radiation or more chemo to get me to remission quickly, and then jump straight into a transplant. If nothing has changed since April or the cancer has spread, then we focus on a clinical trial in October and do that as many times as it takes to get me to remission followed by the transplant. No matter what happens I will be spending several months in the hospital at some point in time. It's going to be a long uphill battle ahead of me with a lot of uncertainty.

Instead of really celebrating my PET scan results, I found my mind plagued by the thoughts and worries of what is to come and how my odds are beyond scary. My anxiety and depression were starting to take a serious toll on me. When people were smiling and celebrating my news, I tried my best to enjoy it as well, but instead, I found myself distracted looking too far into the future instead of one day at a time. People compliment me on my hair and how it's growing back, but instead of appreciating the compliment I would feel detached and think to myself, "I'm just going to lose it all again during the transplant." I was in a very dark place. Everything became robotic going to chemo, sleeping it off, and waiting for the next appointment. I started to lose interest in activities and found my feelings of isolation worsen when more and more friends started moving away.

Then, out of nowhere, a very good family friend of mine offered to take me on her family vacation to the turquoise waters of the Caribbean. Despite my anxiety about what others might think of this and feelings of not deserving such a blessing, I decided to take a leap of faith and go. Looking back on it, I am so grateful for the wonderful opportunity because I truly believed it saved my sanity. Spending a whole week with fun loving people, no worries, and surrounded by beautiful sites and adventures...I was able to heal. I went horseback riding on the beach, snorkeling in the beautiful waters and sailing for the first time. I even marked off my bucket list relaxing in a hammock by the beach under the stars. It was truly a piece of paradise.

When I returned I had a sense of calm for a few days and still felt like it had all been a dream. But when chemo came around, I was truly dreading every moment. The entire ride to the infusion center felt like I had a giant rain cloud over my head. I wasn't ready to return to this nightmare and needed to find a motivation to get me through. So after a couple weeks of being back, I decided to visit my grandmother in South Carolina and spend some quality time with her during my off week of chemo. While I was there I learned a bit about my family and got to see my Aunt and cousins who also live down there. I even met up with one of my high school friends who went to school down in Charleston and spent an afternoon with her. Not only that, I spent the sunny days of my stay by the beach again.

Since I was little I've always been a fan of the woods and mountains, but ever since this whole cancer situation started 2 years ago, I've found that the beach is the best place to breathe. Something about the sound of the waves and the smell of the salt water...or digging your feet into the sand and soaking in the sun...or walking along the creeping waters for miles listening to music with the waves crashing in the background...it's very therapeutic. One day while I was at the beach, I found myself recalling a quote I read several years ago. "Strength isn't something you have; it's something you find." I was on the quest to find my strength to continue.

For the last two years, my body has been trying to kill me. Physically and mentally it has tried to bring me down and put me in the ground. But for two years I have continued to fight and persevere to stay alive...but what was it that kept me going? One morning I decided to wake up early to see the sunrise on the beach (since I never see the sunrise as I'm normally a night owl).

                                                                                          (A panoramic I took)
So as I looked out at the horizon that morning I found my answer. I keep moving forward because I have the motivation of my friends and family. I also have my ambition to live and to leave a legacy behind. And as I looked at the sky filled with so much color, I recalled how beautiful life is and I have the desire to see more of it, if I can help it. Surviving everything so far has only made me stronger...I can only imagine what I might think this time next year.

So when I returned home the other day, I not only had the motivation to write more again but to continue to fight to stay alive. I just needed to clear my mind, refocus on the now, and to only prepare for what lies ahead. I might still be afraid but I know I don't really have control on the outcome...just that I have to fight to get there. Besides, worrying means you have to suffer twice. I may have to be realistic, but I also have to remain hopeful that I can beat the odds and survive. It's all in the mind. And as Arcade Fire once sang...my body is a cage but my mind holds the key.

Happy Bags

Sorry for the delay in making a new post. This is becoming a common occurrence on this blog and I apologize...I will try harder to keep up. However with the Christmas/Chanukah/New Years celebrations happening this month, there was just so much to do with so little time! Though I did somehow miraculously managed to get all my Christmas shopping and wrapping done all in one week...along with some crafting on the side. Maybe with these skills I should apply for a job at the North Pole?

So I had one week where I was running all over MD/VA/DC delivering presents to friends of mine. Before that I even managed to push through my cancer treatment fatigue to go to a rally in DC. It was to protest the Dakota Access Pipeline and over 1,000 of us walked down the streets of DC from the Justice Department to the Washington Monument where we had a HUGE rally.

                   (I'm the one in the center just above the "IS" in the sign wearing a blue beanie!)
Even special speakers came out including Dennis Kucinich, Shailene Woodley, and Chase Iron Eyes, the latter of whom I walked side by side with for most of the march. It was quite the experience and I can't wait to go to more rallies like this in DC...*cough*WOMEN'S MARCH 2017*cough*

I also manged to see the new spin-off Harry Potter movie called "Fantastic Beasts And Where To Find Them" a grand total of 4 times in the span of one month. As a die-hard Harry Potter fan, this movie was absolutely brilliant! I couldn't even contain my excitement as I was bouncing out of my chair during the big reveal ending...no spoilers.

Eventually all this running around and attending outings caught up with me, and I had to stay in for a bit...a lot of napping occurred in December. However it wouldn't stop me from pursuing my big Happy Bags Project. For those just tuning in, I mentioned in a few previous posts how I wanted to do a sort of "give-back" and spread some joy and laughter to those who find it difficult to experience that piece of happiness. I decided I would give out fun little goodie bags to the local children's hospice center. Each had little toys, treats, and activities for all ages, and every bag had my favorite life motto...a quote by Charlie Chaplin which reads "A day without laughter is a day wasted!". I try to live my life by this quote and wanted to share this little piece of wisdom.

So I made 22 bags of various colors and sizes and stashed them all in the trunk of my car. I drove out the next day and was able to deliver most of the bags to the staff members there to deliver to the children.

I sat down with some of the people who work there to discuss where I was coming from with this project, and I explained how I wanted to continue this Happy Bags idea every month or so. I was then told to sign up as a volunteer, to which I could even put my theatre/music talents to good use. I thought this was a brilliant idea as I haven't been working and wanted to personally meet the kids who received the Happy Bags. I immediately signed up and sent in my volunteer application.

About two days later I got an email back with something I was not expecting. One of the people from management responded to me and thanked me for my Happy Bags idea. However she continued to say she admired my courage and strength that I had with my ongoing cancer battle...but that I could in no way be a volunteer for the Hospice Center because I was currently undergoing treatment. Those who know me, know that I will most likely be on some form of treatment the rest of my life....therefore I could never be a volunteer. That shattered a layer of self-respect and pride in me as I really wanted this. They didn't give me any other explanation as to why that rule exists, but they said they wanted to meet with me to discuss if there is anything else I can do to help out. Perhaps I can continue the Happy Bags in some other way?...I won't know until late January when I meet with them. In the meantime I'm just bummed...

January is a month I'm not entirely looking forward to though. I am set to have my next PET scan on the 12th and it will be my first scan after starting this new immunotherapy. I'm already incredibly worried that it may not be having any good effect on the cancer. Just on Christmas day I noticed the lump on the side of my neck seemed more prominent and sore and I had a panic attack during the family dinner. I have a bad feeling I won't be getting good news next month...but I'm trying not to think about it too much...

Thankfully my grandmother and extended family are letting me take a 5 day vacation trip down to South Carolina where I can piece my mind back together and try to relax. Perhaps I will try blogging during my stay there and ignore all my stupid anxieties.

                                            (Me ignoring my anxiety...obviously)

So while I try to relearn how to deep breathe and relax, I hope the rest of you out there have a wonderful start to the new year, and that you all were able to spend time with family, friends, and loved ones over the holiday. *Raises a glass of sparkling cider* So long 2016...you were horrific....and cheers to a better 2017!!! See you all there!

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.

It Looks Like A Botched Execution

There is so much going through my mind lately that I've been having trouble writing this post. I've been so concerned with tests and surgery and all the while trying to keep my job and my sanity.

Lately I had a neck biopsy to determine what kind of lymphoma I'm dealing with. I arrived at Suburban Hospital with my dad and sister just ready to get it over with.

                                            (Not the best pic but yes I did get my haircut...LOVE IT!)

I had some difficulty with the IV due to my stupid anxiety but my sister was by my side the whole time and luckily they had a TV with a movie channel playing "Into the Woods" which I hadn't seen yet...so that kept me entertained a bit.

My CT scan came back just before the procedure and they found several enlarged lymph nodes in my chest which has been causing me slight breathing issues and coughing. The anesthesiologist was afraid of putting me under general anesthesia so she put me under a twilight version where I was sort of in a nap. I don't remember anything after going on the table in the OR. Next thing I know I wake up to graham crackers and apple juice which felt heavenly going down my throat as I hadn't eaten all day and it was 8pm. Apparently I had conversations with my sister about Jon Snow from Game of Thrones and The Tudors which made no sense but I have no recollection...too bad she didn't get a video. My ENT surgeon was great and gave me pain killers but left me with this HUGE scar on my neck that looks as though someone tried to behead me but got distracted half way through because of tea time.

                                                     (An accurate representation I'm sure...lol!)

There was no band-aid, just some stitches on the inside and surgical glue on the outside...leaving my neck totally stiff for the last several days. I can move it a lot more easily now but still have difficulty hugging people and turning all the way to the left.

Then after the surgery we get a call from the oncologist...she wants me to have a bone marrow biopsy. Now this is something I had a feeling was going to happen and was dreading the thought even more than surgery. I had done research on it before and everything pointed to pain and discomfort.

 Luckily a few days later my oncologist made a change of plans and decided to refer me to radiology for the procedure so they can put me under twilight again so I don't remember anything and I won't feel any pain. I'll probably be so loopy afterward. Maybe I can get a video of the after effects. lol!

But in the meantime I've been trying to maintain a normal life...which isn't easy. Some people at my work are questioning why I've been taking so many days off for these procedures and appointments. Then I have people give me really weird looks when they see the disturbing scar on my neck. I have people asking to see me but my energy is literally shot so bad that I've had to start drinking Boost beverages. Just the other day I sat down to watch the Princess Diaries on TV only to find myself waking up 10 minutes before it ended...it's like I have no control on when my body decides to shut down for a nap. It's so frustrating!!!

Anyway I didn't want this blogpost to sound all ranty but this is basically what has happened in the last week. Now I'll have a PET scan and a bone marrow biopsy to look forward to which I'm sure I'll post for each. Until then I'll leave you with a link to a song that is basically my theme through all of this.

https://www.youtube.com/watch?v=LVxon65u3tA