Earlier this year, I set out with the purpose of embracing my cancer journey more. Not only that, I wanted to do what I could and help other survivors as well. When I was diagnosed, I felt very isolated because there wasn't anyone I could easily relate to. Sure, I could find all the info on what to expect regarding chemo side effects and the obviously outdated statistics for my cancer at the time. However, I couldn't find anyone I could easily look up to and say, "They've been in my shoes and know what I'm currently going through." I mean, no two cancers will have the same story or experience, but many share common elements that tend to be swept under the rug. So, I wanted to get my story out there and have my voice heard.
In addition to attending a young adult cancer camp this summer (see the blog post regarding that), I decided to do an interview with The Patient Story in the hopes that sharing my cancer story would connect with others whose place I've been in. My story is one that defied the odds, and I want to show others that they are more than just a statistic and that there is always hope. So I sat down with a journalist and went into great detail about the three-year battle I had been through.
Today, that interview has been published for anyone to see, and I'm so proud of how it turned out. They did a good job trying to condense everything into one video. Although they covered most of this journey, I intend to use my blog to go into detail regarding the not-so-common experiences and answer any questions left in the comments. Here is the link to the interview with the link to the full interview transcript in the video's description:
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!!"
Wow, what a roller coaster it's been in just a week. It always seems that a trip to NIH indirectly gives me a blessing in the strangest, unexpected way. At the start of last week, I was preparing myself for what seemed like a truly horrible experience and also one with very little odds. I went and had 20 vials of blood drawn, a CT scan, a very uncomfortable MRI, an echocardiogram, a physical, and a giant consultation. I even had a crazy ordeal where I tripped over a traffic cone that I didn't see and someone unnecessarily called an ambulance despite my attempts to say I'm ok....it was so stupid. And yet once again, it seems I may have done it all for nothing...but with good reason. I HAVE ANOTHER OPTION!!!
I was told by NIH that the clinical trial was still in its very early phase with the lowest dose possible. It was already done on two patients, both of which initially responded but relapsed after only 4 months. It's promising but at the moment it doesn't have very good odds to convince me to go through it all. So at the beginning of the week, I sent an urgent email (or two...or three...oops) to my oncologist explaining the situation and begging him for any other possible options.
While I was sending him one of the emails, I recalled what happened when I first relapsed in January of 2016. My oncologist at the time told me she estimated I only had 5 years to live (yeah I didn't stay with her for very long afterwards), briefed me on a transplant and told me that I was to do a very intense chemo treatment known as ICE. Eventually, I got a second opinion and we went with a different kind of treatment...one that wasn't so toxic but ultimately ended up being not very effective. And then it dawned on me...there was a chemo that I hadn't tried!!! ICE chemo was also statistically proven to be successful with primary refractory Hodgkins Lymphoma (the 1% of lymphoma patients...aka me). Immediately I sent my doctor an email with this information and asked for his opinion expressing my strong desire to aim for a transplant (even though there is no guarantee that I will respond to anything).
So as I waited for his response, every trip I took to NIH to proceed with screening I did so with the hope and prayer that I may not need to go back there and resort to a clinical trial that most likely wouldn't work and under the doctors who treat me like a lab-rat and not a human being. God knows I have been a bit weary in my faith these past 2 years with cancer....but I went to the NIH chapel after every appointment and prayed for one more chance at a transplant. Just one more chance.
About an hour ago, I received the call from my oncologist. He is definitely willing to give the ICE chemotherapy a try!! It will be tough, I'll be sick, I'll lose my hair...but he and I definitely think it's a shot...my only shot...at a transplant. He warned me if/when the time comes for transplant, I cannot hesitate or delay. And I told my doctor that if he told me I needed to get a transplant tomorrow, I'd be packing my things up right now and going first thing in the morning to Baltimore. I know what the stakes are now and I'm ready to get to work. BRING. IT. ON.
(If chemotherapy was a college course...)
So I'm supposed to get a biopsy done this week to double check and make sure I'm not dealing with a hybrid cancer (that would change the whole outlook entirely if it is...hopefully, that's not the case). During the rest of the week, my oncologist is going to get in touch with my transplant doctor again to get their opinion. If they aren't on board anymore, he's going to speak with other transplant specialists at Johns Hopkins and even the transplant coordinators at NIH if necessary. But it looks like my prayers have been answered and there's a chance transplant may actually be in my future. The fight isn't over yet and the battle to stay alive has begun. This has already been the best Christmas present I could ask for, to be honest. I'll update again as soon as I start the treatment which will be in the next week or two. I'm going to pray that I don't experience any adverse reactions and I tolerate it well. More to come but tonight is a victory!!
The following video was essentially what was going through my head this week...(the king and sheriff are the two NIH doctors I've been seeing)
Before I begin this post, I'd like to apologize ahead of time if my thoughts don't sound too coherent. This is mainly because I am still physically and mentally drained from my recent immunotherapy treatment. I will try my best to convey my thoughts in either words or my lovely little gifs. Haha!
As I stated in my last post I completed my first immunotherapy treatment. It took hardly any time at all and thankfully I had no adverse reactions. Little did I know I was dealing with a raging storm on the rise.
Unlike standard chemotherapy which is a series of toxic drugs that kill both cancerous and healthy cells, immunotherapy specifically targets your immune system and reprograms it to kill only the cancer cells. In order for this to work, your body normally reacts as if you got a really bad case of the flu since your body is working double time at killing cancer cells. Luckily the only "flu-like" symptom I've experienced is fatigue...but WOW did it hit me like a giant slap in the face.
When Monday came around I went for a dental cleaning....apparently it's mandatory I get checked out before my transplant. As soon as I came home from that I seemed to have passed out on the bed and slept through the entire day. I woke up around 1 am when my mother came home and she asked why I was awake. I told her my lack of activities today and she asked how I was going to sleep through the night. I simply responded "like this!" and passed out again.
I slept through the whole night and woke up at 11am just in time to get ready for my first follow up with my oncologist. I was so out of it that morning that I came to my appointment with some major bedhead and had a giant sweater on in 75 degree weather to cover up my embarrassing sunburn...I was not in the mood for a lecture on sunscreen. My doctor proceeded to tell me that fatigue is extremely common and I should be feeling better by the end of the week. Then she said something to me that caught me totally off guard....if all goes well, I only have 2 more infusions of my immunotherapy before I go in for my transplant process.
We're still looking at potentially mid to late August when I'll be entering the hospital...so soon. Everything seems to be happening so quickly especially since most days I've spent inside with not much to do (rainy weather and all). What's worse is I don't even want to stay cooped up in the house all day. I'm 23 and I want to go out, travel, meet new people, work, go back to school...MINGLE! When I explained this to my doctor she told me that it's very common to feel that way. She told me I should go to my "young adult" support group, but I don't even feel like I can connect with anyone there. I'm the only 20-something year old and everyone else in the group is in remission. Then there's the fact that I can't really hang out with my friends as much because most of them are graduating and moving on with their lives. I don't want to bother them with something they can't really understand. And the times when I'm actually invited out to places by friends, happens to be the time when my body feels so dead to the world that I apparently look like an extra from The Walking Dead...and I'm forced to turn it down.
Obviously this past week has been taking a very emotional toll on me. The fact that I'm going into this transplant without really knowing what will happen and with only my immediate family to visit me in the hospital when they have the chance...it's very hard to take in. But the thing keeping me going strong is actually this blog. I've received quite a bit of feedback from you all and it has prompted me to keep writing more. I've been able to reach out to people like me, and by enlightening them about my story, we share a comfort that we aren't alone. The joys of having technology are in abundance. And it's through technology that I will be able to communicate with people and mingle when I'm alone in a hospital room. I take comfort in that and feel confident I can get through it...even though I fear it. Knowing this, I feel prepared when taking on this transplant.
Every cancer story is different because everyone faces it in their own way...but no story should be taken lightly. Every cancer story is a trial and a hardship for not just the patient but everyone around them. It's just another reason why I decided to write this blog...not just to show the strength and experiences I have...but to also display the weaknesses and fears that a lot of other cancer fighters face. Some people may read this blog to come to the realization of what family members, friends, and peers who have cancer are going through...others may read it to know that they are not alone....because you aren't alone.
