Lymphoma...The Unexpected Battle
Friday, November 24, 2023
Day 2,075 - The Big Reveal!!!
Thursday, November 23, 2023
Day 2,074 - Learning to (Not) Be Silent
When I was in my sophomore year in high school, I decided to take a leap of faith and pursue a passion of mine by trying out for the drama club for the first time. I auditioned for the spring musical Footloose, and although I gave it my all, I didn't quite have high expectations. Sophomores typically don't get major roles as those are typically reserved for the seniors in the drama club. However, to everyone's surprise, I landed the role of Vi Moore (the preacher's wife) with lines and musical numbers, including my own solo. I was welcomed into the drama club with open arms, and my time with the Midnight Players marks one of the best moments of my life. I made so many friends and felt so much love and energy that I would stay in the auditorium practicing dance moves until it got dark outside.
I know what you must be thinking...why am I reminiscing about the "good ol' days" of high school? Well, when I played this particular character in this musical, I had a trio number called "Learning to be Silent." In the song, I talk about how I want to hold my tongue and avoid conflict by staying out of arguments and keeping my thoughts and feelings to myself so as not to upset anyone. Now, "high-school-me" couldn't understand for the life of her what that really meant. I was that obnoxious loudmouth who always had something to say and loved chiming into arguments that were about subjects I was passionate about. Even in the classroom growing up, I was called the "Hermione Granger" of my history class because I insisted on correcting my teachers when they mispronounced European names like Lafayette or Alexei. I was chatting and giggling up a storm if I wasn't singing backstage. This teenage version of me felt too comfortable to hold anything back. Learning to be silent felt like a skill I would never achieve...until the reaper started knocking on my door.
From the moment I graduated high school until recently, I slowly began hiding more and more of my true self. Especially after receiving a death sentence, not once but twice from medical professionals, I saw life slipping away. I felt like cancer, in particular, snatched too much from me that I had very little to hold onto anymore. I lost my hair, my fertility, my confidence, my identity, and almost my future. Despite that, I felt like I needed to internalize a lot of this struggle because I saw the impact it had on the people I love. I lost people who used to be so close to me for years simply because they couldn't handle the problem I had no control over. I also felt like I was a constant burden whenever I spoke up and expressed what was on my mind; I still feel that way sometimes.
However, in the last couple of years, I've really been working towards tearing down the mental walls I've built over a decade. It's been a work in progress to open up again and develop that trust with others, and it's part of the reason I decided to hop back on to my blog. It's not only a great outlet, but it helps put out a message for anyone else who might be going through something similar. Whether they were just diagnosed, in treatment, or post-treatment...this blog is here to say, "I see you, and you're not alone in this fight."
When I looked back on old posts in my blog, I realized that for almost the entire first year of my cancer ordeal, I didn't post anything. This was because I was confident that it would just be a blip in my timeline and that life would just go back to normal...even though "normal" is not really a thing one can ever really achieve after a diagnosis, unfortunately. I'm a bit bummed that I left out so much valuable information regarding those early days. So, I will make it a mission for the upcoming blog posts to reflect and give insight into those early days. I'll keep it light, bubbly, and fun while being authentic and informative regarding my experiences. And to welcome this new era of my blog, I decided to do something incredibly daring. I can't talk about it yet, but once all the beans have spilled, I'll share the news with you all in a new post!! So until then...I hope you all are having a lovely turkey holiday if you celebrate it!
Friday, September 8, 2023
Day 1,998 - Cancer Camp
Tuesday, August 22, 2023
Day 1,981 - New Beginnings
Hello, world...I'm back.
Since my last post almost 5 years ago, there has been so much that has transpired in the world. We collectively spent two of those years in a global pandemic, political tensions, and a whole boatload of mind-numbing occurrences that would make anyone question whether or not they've entered an alternate universe.
However, during that time, I reached new milestones...chapters in my life that I never thought I'd live to see. I ended up on the Dean's List every semester, received my associate's degree, and graduated with honors in May 2020. I moved out of my childhood home again and transferred to the University of Maryland. I saw the band that inspired me to keep fighting through cancer, My Chemical Romance, get back together and see them perform live in concert, something I never thought in a million years I'd get to do. I saw friends get married, have kids, earn promotions, and travel. I also can say that as of March 20th this year, I made the five-year post-transplant mark. I'm officially in a state of remission. I made it. I survived.
This is cause for celebration, right? Well...
The fact of the matter is that the path to get here was one that contained a great deal of pain and hardship. Since receiving this second lease on life, I had to say goodbye to my pug and cat, who passed away in 2020, one month apart from each other, just after I transferred schools. I had to cope with the passing of good friends, including those within my support group. I even had to lay my father to rest last year. I say all this because the takeaway I had from these past five years is that while looking back it feels like dying was easier and living is harder...life still goes on regardless. It forces us to keep moving forward. So you either keep trucking forward, or you surrender to despair...and I almost did just that.
In 2020, at the very start of the pandemic, I attended my graduation on a virtual platform from my bedroom. Being in an almost constant state of quarantine as I waited for classes to start up again (this time at a new campus), I often found myself sitting alone with my thoughts. This made it all too easy to unlock the door in my mind that kept back the flood of cancer trauma. The problem is that once opened, it gets harder to close it back up without repercussions. Juggling the emotions with "normal" everyday life as an essential employee was like trying to scoop up the flood in a bucket, but there's only so much it can carry at a time.
Foolishly, I kept insisting to my peers who saw and pointed out the danger accumulating that I was fine. I knew very well that I wasn't, but I figured if I just distract myself with work or studies, then I'll be fine. So, while everyone was mandated to wear a mask in public, I was wearing two; one to prevent the spread of covid and the other to conceal the pain that worsened day by day. Eventually, there were close calls where I felt like I was drowning, and I was so tempted to just give up. Thankfully, I had a strong support system of friends who willingly pulled me out of these moments of distress. By the end of 2020, I finally took the initiative to seek help and reached out to a therapist, who has helped me confront the damages of this flood in a safe manner. In the end, I wouldn't be here if it wasn't for everyone who stood by my side that year.
I bring this all up because I know what it's like to put on a brave face and pretend like everything is fine, only to suffer in silence when you're alone. I know what it's like to support and comfort everyone around you but pay little attention to your own needs and desires. I recognize just how important mental health is for not just those in active treatment but also those who are in remission. Whether your cancer struggle lasted 6 months or 3 years...it's still a moment in your life when the world gets flipped upside down. To not acknowledge the pain there and put off the necessary healing process, it can be just as lethal as the silent buildup of cancer cells taking over.
So here marks the start of a new chapter.
My name is Maddie. I'm 30 years old. I'm a full-time student and a full-time accountant. And I'm a cancer survivor warrior.
Monday, December 31, 2018
Day 285 - The Unreachable Star
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.
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!
Wednesday, July 4, 2018
Day 106 - Post Treatment, Still Fighting
At the start of last month, I took on a major stepping stone; I went back to school for an online summer course. These last few weeks have been very difficult as I have no energy to do much, and I'm still dealing with some lingering side effects from transplant. However, the great thing about this online class is that I can do it at my own pace (for the most part) and it gives me something to do. If I didn't have that, I'd be extremely bored and most likely severely depressed. I'm not even allowed to go back to work until next year when my blood counts are back and I've gotten all my childhood vaccines again. At the moment, I essentially have the immune system of a newborn baby.
Physically I'm still very weak, which definitely has an impact on what I can and cannot do. I sleep for a majority of the time and have hardly any appetite. I've also been dealing with this pulsing sensation in my ears that just doesn't seem to go away. After seeing an ENT specialist, I was left with more concerns than I would have liked. He couldn't tell me if this was something neurological, vascular, or nothing at all...but he did have suspicions on whether it was related to the blood clot I had at the end of my transplant ordeal. Next month I get an MRI to check and see if there are any problems...if so, I might need surgery.
Needless to say, this past month has been emotionally difficult considering everything going on. My hair is starting to come back, and I've managed to lose 10 pounds since I was discharged, thanks to my waning appetite. I resumed my perfect attendance at my cancer support group and have even caught up with a few friends of mine. I even managed to go to a Celtic festival with my mom and sister for a few hours (I had been dying to eat some haggis since my trip to Scotland). Despite all these wonderful things happening, I still feel empty and low. I thought things would start looking better once I was out of transplant, but the reality is that the fear of relapse is ever more present.
Everyone keeps telling me to "Stay positive!" or "You're cured!" and "You can finally go back to normal life!"...and I'm really trying...but the PTSD from dealing with this transplant, and everything that has happened in these past 3 insane years, is starting to catch up with me. It's gotten to the point where I had to decide what I want to do with my life based on my health predicament. I've been avoiding the summer sun in fear that just the mildest burn could end my life. Every day I have a moment of panic where I quickly check my neck for fear of finding a lump again. I can't sleep at night, because I keep having nightmares where my transplant doctor tells me my cancer has come back and there's nothing left for me. Everyone has been complimenting me on my hair growth, but I can't even enjoy it since I fear for a future where I'm told that I will have to lose it all over again. I try so hard to repress the fears, but it's just too much. There are very few people who seem to really understand as well. It's frustrating to think that even after all the treatment I've endured, I'm still fighting...only this time for sanity and peace of mind.
Thankfully, I'm planning to take some time for myself and get away from home at the end of the month. I'm hoping to be in a better state of mind when I return so that I'm ready for the fall. In September is when the real showdown happens: two transplant follow-ups, a CT scan, and I begin the childhood vaccines. In the meantime, I'll just keep writing essays for my class and distract myself with the World Cup. I may never "go back to normal life"...I've already accepted that...but I hope that with time I can move forward and away from this nightmare. I just have to remember that there is still so much left for me to do and that even in my darkest moments, there's so much to be grateful for.
Anyway, I hope you all have a wonderful 4th of July, and I'll try to update again on here soon!