Growing up with a fairly debilitating anxiety disorder, I was no stranger to fight or flight symptoms and was challenged daily. Even as a preschooler, I would spend an unusual amount of time obsessing over the possibility of having a serious medical condition. A headache meant a brain tumor. An abdominal cramp meant that my appendix was ready to burst. You get the picture. Ironically, however, one of my biggest fears growing up was having cancer at a young age.
Perhaps it's a mere coincidence that I was diagnosed with cancer when I was 20. If this doesn't give new meaning to the command, "Face your fears head on," then I don't know what does.
Five years ago I saw the movie, The Fault in Our Stars. The agonizing tale of doomed love between cancer-stricken teens struck me to my core. This engrossing, passionate, and suspenseful film made me question life's fairness. I left the theater with a sense of appreciation for my health and well-being. I left the theater thinking, "Thank God this will never happen to me." I left the theater without knowing that in a few years I would understand the dark depths of Hazel Grace's thoughts and fears surrounding her diagnosis.
For anyone who has seen the movie, you know that the ending does not disclose Hazel Grace's fate. The movie does not end with her in remission from lung cancer. In fact, the ending is quite realistic. There are millions young adults who cannot say that they are in remission from cancer, either.
I am one of the lucky ones.
This is where survivor's guilt comes into play. Survivor's guilt is described as a condition of persistent mental and emotional stress experienced by someone who has survived a traumatic event. That powerful feeling of remorse screams, "You survived when someone else died." I cannot help but feel badly that my body reacted wonderfully to the standard Hodgkin's treatment, while other people spend years chasing the cure.
Here are some tips to cope with these thoughts and emotions:
Share feelings with family and friends.
Use mindfulness techniques.
Do something good for others.
If these feelings become too intense and overwhelming, please reach out to a trained professional. There are many people who want to help. Think of all the people who care deeply about you. You’ve been given the gift of survival, so rather than rejecting that gift because you somehow feel undeserving, share it with those who love you.
All my love,
Writing captivating articles is not a simple task. It has never been easy for me to open up and share my experiences, but I am now becoming more comfortable sharing a slice of my life. Throughout this process, I have grown a thicker skin, and I am no longer fearful of telling my story.
I created this blog with the intention of keeping my family up-to-date on my cancer journey. In addition, it would function as a healing outlet for me. However, since I posted my first article, the number of Team Lia devotees has grown tremendously. To my amazement, I have been showered with an outpour of love and support from people of all walks of life. I am ecstatic that my articles serve as an inspiration to many. Since my first post, the goal of my blog has been fine-tuned. Now I write articles to keep family, friends, past teachers, professors, and perfect strangers in the loop. Another intention of this blog is to provide a source of comfort to people grappling with a cancer diagnosis. I yearned to have a quirky, relatable, yet honest blog to turn to when my life turned upside down. So, I decided to take charge and create one. It's the best decision I've ever made.
Back to the title, 'Exiting the Dark.' By no means am I out of the dark. I wrestle with my diagnosis every day, and I am beginning to see the light because my treatment is more than half-way over. Seven down and five to go. Two more months before I can say sayonara to chemo and hello to durable hair follicles.
I pride myself on being authentic, and I'll keep that promise by updating you on the positive, as well as the negative aspects of my life. Let's get the negatives out of the way first. I sound like a broken record when I say that I detest chemo with a budding passion. I'm tired of being tired. I'm fed up with feeling nauseous and groggy after treatment. Last week I had the pleasure of being rushed to the Emergency Room because I had an dystonic reaction to my anti-nausea medication. For those of you who don't know, symptoms of dystonia include spasms of the neck muscles, difficulty swallowing and breathing, and tightness of the throat and tongue. Additionally, I've finally gained enough strength to put away the head wraps and rock the buzz cut, but now my hair is thinning. I desire to grow thick, healthy hair, but I will have to be patient.
Looking at the above list, I feel an overwhelming sense of loneliness. Nonetheless, now that I'm sitting with my thoughts, I welcome a sense of belonging. I am not alone. Millions of individuals have walked in my shoes. My feelings are valid. Often times I find myself reeling over the unfavorable aspects of my cancer journey before I refocus myself on all of the surprising benefits.
Now for some positives. I live my best life, free of pain, during the week before treatment. I am currently in South Carolina on vacation with my family, and I am having a blast soaking up the sun. My fingers and toes are shriveled like prunes because I've been in the water all day. I'm in my natural element, and I feel free. I'm returning to school in the Fall. I have been able to connect with people in the last couple weeks who have reinforced the validity of my blog goals. No matter how shitty my day may be, I always go to bed with the belief that I have the power to comfort, support, and guide people.
As I wrap up this post, I intend on making lemonade out of the lemons that life chucks at me. I want to be the person that people look to when they feel like their life is in shambles. I'm brimming with ideas that I will share with you once my treatment is over. Every day I stare fear in the eyes and say FU! I encourage you to do the same. With that being said, I am going to end this article with one of my favorite quotes. The first time I read this quote I was floored. Read it and then read it again. I have hopes that it will speak to you as well.
All my love,
I feel a mighty urge to write about my 7th chemo session that I had yesterday. For lack of a more elegant word, it sucked, and therefore I am compelled to vent.
To make sense of the following events, it's crucial that you understand what a chemo port is. A port is a surgical device with a tube that connects to a large vein, and it is implanted in the upper chest. A port can be used to draw blood and infuse strong chemotherapy drugs. Without a port, a new IV needle needs to be placed in your arm each time you have chemo. To prevent my precious veins from becoming destroyed, I decided to get a port before my first chemo treatment.
Before my premeds and chemo drugs can be injected through my port, the nurse has to check for a good 'blood return.' Blood return is the ability to draw back blood. Having a good blood return basically means that my port is working properly. Unfortunately, yesterday it was not cooperating. Sometimes an easy fix like switching positions or taking deep breaths can create good blood return. After laying down, standing up, and taking many deep breaths, my nurse decided to administer a medication to help to unclog my port. Because it is urgent that I stick to my chemo schedule, the last resort was to give the drugs through an IV in my arm. I was not a happy camper. What was the point of going through the trouble of getting a port implanted?
However, by some stroke of luck, my port decided to work right before the nurse administered the chemo through my arm. I was finally able to get my chemo drugs through my handy dandy port. To make my day even more exciting, I had a wonderful time throwing up in the hospital bathroom after receiving my first chemo drug, Adriamycin. #thriving
Enough with the medical jargon. The week leading up to this last treatment was awesome. I spent it with Brian's family down in Lavallette. I relaxed and spent time playing in the salty ocean water. I am blessed to have found my second family. It is also worth mentioning that I am proud of myself for embracing my body at the beach. I have gone this whole summer without wearing a bikini because it exposes my port. Nonetheless, I said f*** it, and I wore one with spunk. It was time to seize control. Why do we spend time worrying about how others may think?
In general, the week before chemo is always a tease because I feel healthy and strong just to have that stripped away from me with another chemo session. I'm thankful to have these memories to hold onto, though. Until next week, when I'm feeling like myself again, I will sleep, eat Kraft mac n' cheese, and watch Queer Eye on Netflix. Please comment Netflix suggestions in the article comments. I need a distraction. Thank you.
All my love,
Don't get me wrong. I am relieved that I am cancer-free. I have a second chance at life. However, in the last week I have slowly begun to come down from the high of the good news. I am learning how to cope with my new reality. My goals have been revised and shifted. No longer must I live in "survival mode." I was able to rid my body of cancer. I won that battle. Now I have a new battle to fight: keeping the cancer away forever.
When I was diagnosed a few months ago, I daydreamed about the day I would become cancer-free. I thought that I would live off the high from the good news forever. Now that I am free of cancer, I can confidently say that it is not possible. I hit the halfway mark in my treatment, and instead of celebrating, I am unquestionably dreading these next few months. I am sick and tired of chemo. I hate how it zaps my energy for a week, makes me nauseous, and makes me feel as though I have no control over my body.
I want to feel healthy again with only an occasional bad day. Is that too much to ask?
Every day I am struggling both physically and mentally. People may assume that once you are cancer-free, all is well. This could not be farther from the truth. To explain this point, I am going to quote my incredible cousin, Colleen, who has gracefully shown me how it's possible to make the best of a cancer diagnosis.
"I don't think people realize how much cancer really sucks even when you're cured and cancer-free. Being cured is wonderful, but it doesn't end there. People undergo follow-up surgeries, chemo, radiation, or drugs with terrible side-effects...and those are only the physical aspects. The emotional component is far more challenging."
It's important that we immerse ourselves in her words. Cancer-free does not mean pain-free. It does not mean worry-free. It certainly does not mean stress-free. It means that a new journey is taking form; a journey that might take the rest of your life to accept.
Anyways, back to the point about struggling. Physically, the chemo is taking its toll on my body. Mentally, the chemo is shaking me to my core. I am strikingly frustrated. I am making a firm attempt to come to terms with my new diagnosis. My mind is cluttered with questions that do not have answers yet. I want to know why this happened to me at 20. I want to know how to prevent this from happening again.
I hope I have made it clear that even though I am cancer-free, my life is not all rainbows and butterflies. I am not here to sugar-coat things for you; that would be hypocritically insincere of me. Every day I face new challenges. I will do everything in my power to get through these next 3 months and then face a lifetime of new challenges. If only I could travel in time to see how this will shape my future. One thing that I am fairly certain of is that my best is yet to come.
Stay tuned, folks.
All my love,
I feel an overwhelming urge to write about the elephant in the room: my hair. I've been getting an influx of messages pertaining to my hair, so I am here to put your curiosity to rest.
To begin, I need to go back in time to when I was first diagnosed. I can vividly recall twiddling my fingers anxiously as I awaited the news from my oncologist. She highlighted three guaranteed symptoms:
Left = before haircut. Right = after haircut.
I was then faced with a decision: to buzz or not to buzz. There was no way in hell that I was going to watch my hair fall out. Cancer had taken enough from me already, and I was certainly not going to let cancer be in control of my hair too. If it was inevitable that my hair was coming out, I wanted it to be on my terms.
I marched directly to my parents' room. "Mom. It's time." In order to prevent myself from chickening out, I snagged a dull pair of scissors and gave myself a horrendously hilarious haircut. The objective was to make my hair look so unappealing that I'd have no other choice but to buzz it off. I then passed the baton over to my mom and Brian, and they did the deed. Nervous for the big reveal, I crept over to the mirror. I expected to be flooded with emotions, but instead I felt nothing. Not sadness nor anger. Not fear nor contentment.
Fast forward to three weeks into my chemo treatments. My hair had not fallen out yet. I remember thinking to myself, "This is odd." Fast forward to 6 weeks into treatment. Not only had my hair not fallen out, but it was growing. What the f***? Worried that this meant that my chemo was not working, I cautiously inquired. To my relief, my oncologist assured me that my lack of hair loss had nothing to do with the effectiveness of chemo. Fast forward to today. I still have my hair. I might just be the 0.001% of Hodgkin's patients whose hair fails to fall out.
You might be surprised to learn that I still have hair, and therefore, you might be curious as to why I frequently wear head wraps. The answer is simple. I often feel prettier in head wraps. Honestly, I don't feel bad-ass with my new haircut. I wish I could say otherwise. I miss my old hair tremendously. I miss brushing it. I miss being able to "do my hair" before going out. I impatiently look forward to the day when I will be able to run my fingers through my hair again. Until that glorious day arrives, I will have to live with the buzz.
Before I end this post, it's imperative I make it clear that my experience with my hair is unique to me. Everyone's experience with chemo hair-loss is different. Some people let their hair fall out naturally. Some people purchase wigs. Some people choose to embrace their beautiful, bald head. Some people are absolutely devastated by their hair loss, while some people could not care less. If there is one take-away from this post, I hope it's that everyone's cancer journey is one-of-a-kind. It's not always beautiful, but it's one-of-a-kind.
All my love,
*insert drum roll*
I am officially CANCER FREE!!!!!!!
F*** YOU stage 4 Hodgkin's lymphoma! You messed with the wrong girl, and you lost this battle.
I have never been happier to write a blog post. There is so much that I want to say, but words seem to be escaping me right now. I want to thank every single one of you from the bottom of my heart for all your love, support, positive thoughts, prayers, and healing vibes. I have graciously received them, and they made all the difference. These last couple months have been the hardest of my life, but your kinds words of encouragement and love have made it so much easier for me. I will appreciate it for the rest of my long life. I am overjoyed to share this news with you.
I want to thank my amazing oncologist from Overlook (you know who you are) for being the most grounding, supportive, caring, not to mention smart doctor that I ever could have asked for. Thank you for taking care of me. I mean really taking care of me. My family has relied on you for information, emotional support, and overall sanity. I also want to thank my incredible oncologist from MSKCC. You have made my team complete and have been essential to my recovery. Without you and your dedication to Hodgkin's research, I wouldn't be thriving today. I will always be grateful for the both of you.
Although this is wonderful news, unfortunately I have to undergo preventative chemotherapy treatment (AVD) for the next 4 months. If all goes well, I should be done with treatment a week before my 21st birthday in October. Please continue to send your healing vibes my way. Before I forget, I want to mention that I will still be posting articles and videos on my blog. There is so much more that I desire to write about, and I want to continue to document my treatments over the next couple months.
Just a quick reminder to never take your life for granted. Trust me--you'll appreciate more, empathize more, and simply be happier. Do things that make you happy and relaxed. Your mental health should be one of your main priorities if it isn't already. Eat. Just eat. Be kind to yourself. You can be your best friend or your worst enemy. Choose wisely.
All my love,
The title of this post is deceiving. My Saturday night was anything but wild.
Now that I've gained an abundance of fame and am one post away from receiving the Nobel Peace Prize, I feel pressured to entertain the masses. Lol. I can't say that with a straight face. Even so, I do feel obligated to provide y'all with interesting content.
What should I write about? Hmmm...
The storm last night? Brian's thrilling allergy appointment? My guinea pigs' new herb diet?
Ha. Only kidding.
I'm going to write about an old-fashioned concept: turning off your screens. Yes, that includes laptops, tablets, and any other electronic devices that you are a slave to every day. I'm not trying to sound preachy, but for heaven's sake....put your darn devices away. Look around. Pay attention to your mom. Talk to someone face to face. Learn how to crochet. I am fully aware that this is hypocritical, because I'm writing on my laptop, but hear me out. I am not saying this as someone who is above you. I, too, am not perfect.
To be honest, I've never been phone-obsessed. But now more than ever, I am hardly on it. Nonetheless, I am mad at myself for wasting so much of my precious time on screens. It's better late than never though, right?
I want to share some of the things that I have been doing in my spare time. Maybe it will help to ignite a true passion or simply kindle a buried talent or interest.
The point of this article is not to bash you for being on your phone. My objective is to kindly encourage you to put it down every once in awhile. Put it away when you're interacting with family and friends...when you're eating...when you're bored...when you're about to go to bed. It might be hard at first, but you must fight the urge to reach for it. You don't need it as much as you may think you do. Whatever is on your phone can wait. The endless possibilities of things right in front of you can not.
All my love,
I am so excited to share this update. Have you ever heard the quote, "We meet the people we're meant to meet?" This weekend I fully embodied this saying.
On a whim, Brian and I decided to travel to Bethlehem, Pennsylvania to attend Shane Burcaw's annual 5k event. For anyone who doesn't know, Shane Burcaw is an author, blogger, and YouTuber who was born with a disease called spinal muscular atrophy (SMA). To put it in uncomplicated terms, SMA robs him of physical strength by affecting the motor nerve cells in his spinal chord. It makes the muscles in his body surpassingly weak. Shane has certainly made lemonade out of lemons. For the last handful of years, he has been changing the world through his non-profit organization, Laughing At My Nightmare. Through his non-profit, he has raised approximately $200,000 for SMA patients and their families. This money revamps the lives of people living with muscular dystrophy by providing them with free medical equipment. Absolutely amazing.
Throughout this last year, I have been watching him and his fiancé, Hannah, on their YouTube channel called "Squirmy and Grubs." Their videos tastefully cover the ins and outs of their life as an inter-abled couple. I appreciate the honesty, humor, and normalcy of their videos. I applaud Shane for living his best life and tackling life's challenges with grace and a crap ton of humor. Their videos and books have been especially comforting for me over the last couple months following my diagnosis.
When I heard Shane was hosting a 5k only an hour from my house, I screamed. This couldn't be more ideal. Not only was the race conveniently located nearby, but it fell on the weekend before my fourth chemo treatment. I held onto the hopes of meeting Shane and Hannah, while I booked a hotel room. Brian and I left NJ on Friday, and on our way to PA, Shane posted a flyer for a book reading and signing that same night. Again, I screamed. Not only were we going to go to the 5k the next day, but we were also going to attend his book signing that night. This was too much for me to handle.
Close your eyes. Picture one of your favorite celebrities. Now imagine coming face to face with them. You'd freak out, right? I was expecting to be a meager ant among hundreds of people. To my dismay, Brian and I walked into Barnes and Nobles to see an arrangement of 20 chairs. 20! I pulled Brian to the front row. It was here where Shane and Hannah would be a mere foot away from us. I was going to go from watching them on a screen to smelling their cologne and perfume. Holy shitballs. Call me crazy, but being in their presence was close to an out-of-body experience. I was able to ask them questions, chit chat a bit, and even snap a picture. They are lovelier than I ever could have imagined.
Now, have you ever heard the quote "Sometimes it takes a wrong turn to get you to the right place?" I believe that if I was never diagnosed with cancer, I would not have been able to meet Shane and Hannah. Additionally, I wouldn't have been able to meet a remarkable woman named TaLisha.
I met TaLisha and her family at Shane's book reading. We exchanged small talk before the event but ended up talking for an hour afterwards. We instantly connected. TaLisha has a disease called Congenital Muscular Dystrophy (CMD), and she lives with her loving husband and their three young (and freakishly adorable) children. She has a YouTube channel called "Rolling Through Life With TALISHA."
The next morning we met TaLisha and her family at the 5k. We were surrounded by hundreds of people who were just as pumped to be there as we were. We walked with a purpose: to laugh at our nightmares and take control over it. Brian and I were walking to laugh at Hodgkin's. We even made 'FU Hodgkin's' shirts. We walked, talked, and bonded with TaLisha and her family for the duration of the 3 mile trek. It was a perfect ending to an insanely superb weekend.
Here are some pictures!
With this weekend coming to a close, I feel more empowered than ever. I'm starting to feel like myself again, mentally and physically. I am no longer in pain. I am opening my heart and mind to new experiences. I am making friends with people who are making a difference in this world. I am intermingling with people from different walks of life who are embracing their lives.
I guess the paramount point of this post is to remind you to keep an open mind. Entertain new connections. You never know who you will meet and form relationships with. If there's something you've been meaning to do, wanting to see, craving to eat, or somewhere you've been wanting to travel to...DO IT. SEE IT. EAT IT (LOTS OF IT). TRAVEL THERE.
Promise me that. You don't have to be diagnosed with cancer to be your best self.
All my love,
I want to make something clear. I am not a hopeless romantic. I do not believe in soul mates or any of that lovey-dovey mumbo jumbo hogwash. I don't think that two people are destined to meet, intended to fall in love, and predetermined to live happily ever after. With that being said, however, I do believe that sometimes someone stumbles into your life and makes a lasting impact. For me, that person is undoubtedly Brian Garcia.
If you know what it’s like to be diagnosed with cancer, you know that it's an onerous reality to come to grips with. It felt like the ground was collapsing from under me. For a moment I lost my footing and started to slip. Nonetheless, Brian was there to catch me. Instead of falling, I reached out and grabbed his extended hand. He pulled me up out of the rubble and helped build a platform for me to stand.
Thank you for staying strong for me and for holding your head up high when the forces of gravity try with all their might to pull it back down. Thank you for loving me unconditionally through sickness and health. Thank you for being a voice of reason. Your incredible sense of fortitude is profoundly grounding.
You've surely been thrown into the fire, but every day you show me how close we are to smothering it. Although this plain-old sucks that we have to go through this at a young age, I wouldn't have it any other way. This is our unique path. It's hectic. It's messy. But, it's tirelessly beautiful.
Years from now we will be able to ruminate on this experience and how it intensified our bond. We will have been to hell and back. We'll recall the bleak times, but we'll have a deeper sense of gratitude for the good ones.
I fell in love with you the moment I met you. I love you now, and I'll love you forever.
All my love,
Hello, amazing people.
The wait is over. I'm writing this from the bustling chemotherapy treatment center. I am being pumped with pre-meds before I'll be given my life-saving drugs for the third time. It's absolutely bonkers that four drugs are the difference between my life and death. I'd be lying if I said I didn't have a newfound sense of gratitude and admiration for everyone in the medical field.
Now that I have two of these joyous treatments under my belt, I am a pro. I fist-bumped the cheerful receptionist, I have my assortment of snacks and books ready at hand, and they know my smoothie order from the hospital cafe.
The title of this blog post is quite literally my mantra of the day. Before departing to the treatment center this morning, I warned Brian that today would be unlike the last two sessions. I am pleased to report that in the last couple weeks there have been two instances that have validated the effectiveness of the chemo: 1) I can no longer feel the lymph node on my neck, and 2) my back pain has significantly decreased to the point of no return. Before you jump for joy, I want to reiterate that this does not necessarily mean that all of my cancer is gone (although it's possible!). However, it undeniably alludes that positive progress is being made.
A month ago I had the pleasure of connecting with a wonderful girl who was also diagnosed with Hodgkin's around the same time as me. After learning her chillingly similar story, I can certainly say that I am in awe of her confidence and poise. She is positive that her cancer will be gone by her next PET scan. She has unmistakably motivated me to seize some of my inner courage and channel it towards my healing.
Before today's chemo session I asked Brian not to bring anything that would normally keep him busy for the few hours of treatment. This is how it went down:
Me: "Today we are going to channel my inner healing vibes during chemo so don't bring anything with you."
Brian: "Uh. Sure babe sounds good. What does that mean exactly?"
Something that I will never take for granted is Brian's open mind and ability to adapt to the various peculiar situations that I drag him into. After he confusedly asked what I meant by "inner healing vibes," I pulled some bullshit out of thin air and explained that, through my various meditation and Reiki classes, I've learned the extent to which our minds are so powerful. Before you think I'm a kook, I want to make it clear that I do believe in science and the power of medicine. In spite of that, I also believe in the power of words, meditation, and positive thoughts. Our mind is undoubtedly one of the most powerful and complex organs, and various studies have analyzed the relationship between positivity and treatment outcomes. I would be an idiot if I didn't give this a try.
Fast forward to now. Brian and I are making a clear-cut attempt to sing a variety of 'healing chants' in the treatment center. Yes, the grannies are staring. No, I'm not going to stop. Here is a list of the chants that we've made up on a whim. Pretty creative if I do say so myself.
- "Pain pain go away come again another day"
- "Don't stop the heaaaaling. Hold on to that feeeeeling"
- "Woaaah reclining in a chair. Pump my meds and we'll make it I swear"
- "Sweet Hodgkin's. Bad times never seemed so good"
If this isn't love then I don't know what is.
So, I am going to sing off key and welcome the chemo into my veins with open arms. I am going to feel like crapola in a couple hours once the medicine weasels its way through my body, but I'm not resentful and I'm certainly not scared. I have high hopes that this third chemo session will kill more cancer cells, and maybe, just maybe, it will finish the job. Once the fatigue subsides in a few days, I'll be able to regain my strength and assess the progress. I look forward to updating you all.
Once again I want to thank you for reading my blog and for leaving the most uplifting comments. I also want to let you know that I added a new page to my website titled "Video Updates" where I will be posting videos about my progress. Check it out at your leisure.
Peace out. Until next time.
All my love,
Hi, I'm Lia. I have Hodgkin's lymphoma, but Hodgkin's lymphoma does not have me.