Day 2,075 - The Big Reveal!!!

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 Sure, I could find all the info on what to expect regarding chemo side effects and the obviously outdated statistics for my cancer at the time.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:

https://youtu.be/5D07sKKNk1k?si=lsZvhW_EExzKSHgQ

So, with that said, until I pop back on here with my next blog post.....

Day 1,998 - Cancer Camp

Last weekend I did something I haven't done properly in a while...I took a vacation. *GASP* 

Now I know some people will read that be like, "But Maddie, you went to the beach," or "What about when you traveled to South Carolina?"...yes, I've taken days off here and there for activities, and yes I've traveled to visit family. However, every time in the past three years that I've "taken a vacation," I never truly allowed my mind to stop worrying. In fact, I would find myself getting even more stressed thinking about how I was wasting precious time and worrying about how had all these things I still have/want to do. I'd come home even more tense than I did when I left. Except, this time was gonna be different. 

At the beginning of the year, I was trying to look for any young adult cancer support groups or activities that were held outside of a virtual platform. I wanted to meet new people in a non-judgemental space, and I was determined to find an inexpensive getaway from all the day-to-day craziness. Then one day, I came upon the website for YASU (Young Adult Survivors United). I found a plethora of resources and events, one of which led to a registration page for the Young Adult Cancer Camp held just outside of Pittsburgh. There were promo pictures/videos of people in their 20s and 30s smiling, going down slip 'n' slides, and participating in a writing workshop. I was sold, and instantly, I sent in my registration form.

Fast forward to August 31st, I left my morning class on campus, hopped into the car that I had pre-packed the night before, and set off down the road for Pennsylvania. All the way there, I was listening (and singing along) to showtunes in the car when "Something's Coming" from West Side Story started to play. Memories from when I was a kid driving up to Pittsburgh to visit relatives with my dad started bouncing around in my mind. The anticipation I felt driving up for camp felt like the anticipation I felt back then, knowing a lot of fun was coming my way. With a smile, I started singing along..." The airrrr is humminnnn', and something greaaaat is comin'." Something great most certainly was!

After about four hours, very little traffic, and a couple pit stops along the way, I eventually turned off onto a dirt road with a Christmas tree farm on the left-hand side. The trees were so tiny but also incredibly misleading since, further along the road, I eventually found myself in a tunnel of very tall trees. Everything was so green, and pulling my window down, I took in the fresh air. Eventually, the dirt road pulled up to a big open space with the main lodge in sight. I parked up by the entrance to what would be the dining hall and was immediately greeted by the camp counselors whom I'd never met before. They gave me a bag with some cancer survivor goodies and a schedule of activities for the next three days before pointing me in the direction of Harbison Lodge, where I would be staying with half of the girls attending. I hopped back in the car so I could unload and unpack while everyone was already gathering for an early dinner. Harbison sat quietly on top of a small slope cloaked by tall trees. I parked next to one of the campers here who happened to have the same bumper sticker as me...Already I had a good feeling about this place.

I walked into a big common room area that looked so cozy with comfy sofas perfect to curl up and read a book in; this was my fallback plan should it rain during my stay, which, thankfully, it did not. My dorm was all the way at the end of the hall, with the walls lined with four sets of bunk beds with only the top beds unclaimed. I picked the one closest to the window that had the best view of the greenery just outside. 

Once I settled in and freshened up a little, I grabbed my bag and made my way back to the dining hall. Almost 100 people filled the space! I grabbed some food and signed up for a majority of the activities before the icebreakers began. We split everyone up into two groups and repositioned the chairs and tables so that we all sat in two big circles. One by one, we introduced ourselves and stated our cancer diagnosis. I sat there with wild emotions...I had never found myself surrounded by SO many people my age who had been in my shoes before. One of the girls stated she was diagnosed with Hodgkin's Lymphoma, and in my head, I was like, "OH MY GOD! I HAVE TO TALK TO THEM!" 

Until that day, I never got to meet anyone who had Hodgkin's Lymphoma despite it being one of the more common cancers in people 20-25 years old. But then...a second person stated they had Hodgkins as well, and I was totally freaking out on the inside. Where had these people been for the last 8 years?!? (I should mention that half the people attending were not very far out from active treatment and, therefore, would have been diagnosed years after me.) 

A moment later, my jaw would drop after a third Hodgkins case was announced. Out of everyone attending, a good handful of us were Hodgkin's Lymphoma survivors. I was blown away. 

After making this discovery, we dispersed, and I made a mad dash back up the hill to my lodge to grab my Unus Annus hoodie in case it got chilly. Just as the sun was starting to set, we all met up behind the dining hall, where a roaring campfire was already burning bright, hidden by a wall of trees and in front of a stone platform. Some of the girls were already cooking up smores, and I chatted with a few who weren't in my icebreaker circle earlier. With our stomachs full, we all started to drift back up towards our assigned lodges for the night, with only the full moon lighting our way. I took my time walking back, and in the middle of a clearing, I chose to stop and look up at the night sky. It had been such a long time since I had seen that many stars out. 

It was at that moment, while gazing at the stars, that I decided to make a solitary goal for myself. I wanted to use the opportunity of being at camp to embrace the theme of letting go. I wanted to use this time to have fun and relax rather than worry about anything beyond those three days. I told myself to forget about work and that my coworkers would survive without me for a few days. I was not going to allow myself to worry about my college classes since clearing my mind of that anxiety would be beneficial for my grades in the long run. I tuned out of various social media platforms for the most part so as not to be provoked by politics and drama. If I caught myself thinking about anything stress-inducing, I would just remind myself to breathe. This silent vow I made turned out to be the key to unlocking this much-needed vacation. 

The next morning, I wasn't surprised at all to find that I accidentally slept in, considering I stayed up late writing in my journal and chatting with some of the girls before actually going to sleep. Ultimately, I missed breakfast, as well as the first activity that I signed up for, the guided hike. I was the only one who hadn't gotten out of bed. Looking at my watch, I found out that I not only forgot to set my alarm but only had 10% battery remaining. I wasn't even upset to find that I left the charger at home on accident because who needs to worry about the time when my single objective was to just be in the present moment, right? Scrambling out of my bunk, I quickly got ready for the day, grabbed my camp bag, and made my way to a writing workshop I signed up for and refused to skip out on. 

I grabbed a seat just as everyone eagerly flowed into the room from their first morning activities. The long tables were positioned in a giant square, and at each chair was a brand-new guided writing journal. During this workshop, I could sense the energy in the room was full of deep emotions as people wrote about dark and painful memories, while at the same time, the atmosphere was also brimming with love and support towards one another. As volunteers read aloud some of the things they wrote, many of us were nodding our heads in agreement and empathy. Toward the end of the workshop, I felt encouraged to share what I wrote for one of the writing prompts, which I wanted to share with you all here.

The prompt: What is something you can do for yourself today that will bring you joy?

My response:

Breathe

Look and cherish the beauty all around you

Live in the moment and notice the little things

Listen, and not just to the words you or others speak

Welcome the feelings with no shame

Allow yourself to let go of the past

Discover and try something new

Eat good food in good company

Go for a swim and float with a peaceful mind

Take a long walk and admire the stars

Journal before the lights go out

But first and foremost, remember...

Breathe

It was a simple response that ended up inspiring and encouraging those in the room with me. I left the workshop feeling even more at peace but also motivated. By the last day at camp, I was proud of myself for having fulfilled a lot of what was on this list. Over the course of this getaway, I rediscovered some of my passions and hidden talents, like archery (even a week later, I still have the bruises to prove it). 

I went swimming twice, went down a slip 'n' slide for the first time in years, tie-dyed, and did a water aerobics class for the first time (because who wouldn't want to dance around with pool noodles while jamming out to Nicki Minaj's "Starships" surrounded by a bunch of cancer survivors with dark humor). I made so many new friends who all swore that they would return next year (I'm personally holding the Lymphomies to that promise). The weather was perfect during my stay, and the food was fresh, healthy, and delicious. On the second night, a bunch of us stayed up late playing board games and card games. There were moments on this trip where I felt like a kid again, and although I had only known the other campers for a couple days, I felt comfortable opening up and talking about my story multiple times. It was an incredibly healing experience.

https://www.instagram.com/reel/Cwuw3I5AJsD/?utm_source=ig_web_copy_link&igshid=MzRlODBiNWFlZA==

I left camp feeling so rejuvenated and energized, so much so that I made a few spontaneous stops along the way home. First, I stopped by the cemetery to visit my Dad's grave before swinging by his hometown of Glassport. This town was admittedly a bit run down and had changed drastically since my childhood days when I would go up to visit my grandparents/relatives in the summer. Despite that, I revisited all the old destinations and grabbed some food to go from the diner my grandfather frequented. Half the workers there recognized me instantly as "Joey's kid," and I took some time talking to each worker while looking at old pictures of my dad and grandfather. On my way out, I swore I'd come back again soon. Then a few more miles down the road, I decided to veer right to check out Fort Necessity, spending an hour out there before hitting the road again (It's not a proper road trip for me unless I find something historical about it).

This truly felt like a long overdue vacation despite it lasting less than a week. Sure, I came back tired/sleepy, but overall I felt less tense or stressed. Instead, I feel motivated and empowered going into this new semester of classes......And speaking of which, I should probably get back to my studies. 

If you are a cancer survivor, I highly recommend checking out YASU's Young Adult Cancer Camp next year. And if you aren't a survivor but know someone who is, please spread the word, as it is open to young adult survivors from anywhere in the US or Canada! YASU also offers online resources, hosts support groups and healing workshops, and holds events like this throughout the year. I also encourage anyone who is feeling generous to donate to this non-profit organization, and I'll leave the link to their webpage here: https://yasurvivors.org/

And remember...

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

Day 106 - Post Treatment, Still Fighting

It wasn't until I started writing this post that I realized I'm post 100 days after transplant. Wow. Already I feel like I've come so far, and yet I have so much more ahead of me; just thinking about it makes me queasy.

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!

Day 63 - Home Sweet Home

Hey everyone!! I'm so sorry...I had meant to post an update much sooner than this, but things were constantly getting in the way. For one, I'm still experiencing headaches at an alarming rate. I'm hoping that will die down as the days go on as it's medication related and I discontinued a pill that caused the horrible pains just 3 days ago. Another reason I've been delayed in writing up a blogpost was due to the agonizing pain of a blood clot that formed in my jugular vein which thankfully I caught in time. I was dealing with fevers and couldn't sleep since just the slightest touch to my neck was excruciating. At first, the doctors thought it was simply muscle related, but after doing an ultrasound they immediately found the clot and started me on a blood thinner injection I have to do twice a day for the next five weeks. This all happened just days leading up to my discharge.

Discharge day was last Thursday and what I was anticipating to be a smooth and easy day, turned out to be anything but. I started off with getting my catheter taken out. It was quick and easy, but it definitely stung like a bee sting thanks to all the alcohol prep and the fact that they had to put pressure on the spot of my neck where my clot is as they took it out....not pleasant. Then I came back to the cancer clinic to get my lab results back only to find out that I needed a blood transfusion. They were ready to access my chemo port but after several attempts poking me in the chest over an hour, they didn't have any luck. My port hasn't been used in about 2 months (it had been covered by the bandaging of the catheter) and it was quite tender being in the same spot as where my catheter had just been. In the end, I had to get a lovely jab in the arm with a huge IV. Again...not fun.

Finally, the day came to an end, and I was able to leave Baltimore the next morning. Part of me was relieved to finally be away from the constant appointments and being stuck in the tiny apartment for most of the day. Groundhog Day finally came to an end!! I'm happy to be around trees and greenery again instead of the cold grey buildings of the city. I love city life, don't get me wrong...it was just not ideal being in Baltimore of all cities. Still, I can't help but count my blessings that I was able to get such great care from Johns Hopkins...I can't recommend a better cancer center.

I'm taking things very slowly though as I am trying to readjust being back home. On the first day back, I managed to pull muscles in my legs, because I wasn't used to climbing 2 flights of stairs over and over while unpacking. Whoops. Now that my legs are recuperating, I'm looking forward to what the summer has in store for me. I'm taking a summer course starting next month and I plan to slowly build back my endurance so I can start working out again. It's still too early to go back to work though and I've been told I won't have my old energy back until probably next year. That's ok...if there's one thing cancer has seriously taught me, it's patience and just taking things one day at a time.

So, once a week for the next four weeks, I will be reporting to follow up appointments....and then once every other week following that for the next six months. At the end of discharge day, I got the results of my first CT scan which showed that I'm still in the clear and that there are no signs of recurrence (something that would be very rare at this early stage). Hopefully, it will last. If I make it to the one year mark, I'll be in a generally safe place...even better if I make it to 5 years with no signs of cancer. However, if I relapse between now and March 20th of next year, there's really nothing left for me....but I feel confident that all will be well. There's nothing I can do now but wait for the next scan. Only time will tell if the transplant worked. Time...something I hope to have much more of. There's gotta be a reason why I've made it this far and defied the odds.

Reflections And Moving Forward

Today is New Years Eve 2017. Today is also a Sunday. And today happens to be the day when my oncologist decided to give me a belated Christmas present...my last chemo start date!!!!

He said that even though the hospital has openings tomorrow, he wants me to prepare to be admitted on the 8th. One reason for this is because the hospital is planning on being super busy tomorrow, and he wants me to have the best monitoring possible, since I have a track record of having adverse reactions to new chemos...like not being able to breathe (which is the scariest thing EVER). It's probably best I have as much help as possible going into this.

Another reason for the one week delay is he has already scheduled my next PET scan for the earliest possible date (January 17th in the late afternoon...fun). He wanted me to have this PET scan shortly after the first cycle of chemo to see how quickly I respond to the chemo (the quicker the better), and also as a start point to compare with a PET scan after my second or third cycle. So as the appointments stand at the moment, I'm looking at being admitted next Monday on the 8th and if all goes well, I'll be discharged on the 10th, followed by 2-3 weeks off before I go in again for the second cycle.

In a way I'm a little pleased that I have a week to prepare myself, as my preparation is mainly buzzing my hair super short again, since I've been told I will most definitely be losing my hair immediately after starting this chemo. I plan to buzz it Wednesday, but I don't even really care about the hair loss factor anymore. The only priority I have with this treatment is that it works. It's a long shot but I just have a good feeling about this. I just hope I'm right. And if all goes well, I can proceed to transplant immediately afterwards. This new year is the beginning of the end.

Looking back on this past year is honestly one I'm very proud of. Despite getting the worst news at the beginning of the year, thinking I had run out of options, a miracle happened. My body proved that it can still respond to chemo (let alone a chemo that was only supposed to keep me stable, nothing more). I also felt the closest I was to being normal. The day after I received the horrible news in January, I marched with millions of women around the world for The Women's March. I made many new friends this year. I took non-credit courses, because I missed being away from school and wanted to learn more for the sake of learning. I also travelled EXTENSIVELY...the Caribbean, UK, Europe...all because of the kindness and love of others. Dreams came true when I was able to see my family in France after over 10 years. And even though I came back from my travels to once again bad news, I found both my faith and hope grow. This was truly the year I LIVED...and I wouldn't change anything about it. All I can do is move forward to whatever the future has in store. I feel ready and charged to take on this chemo and am whole-heartedly praying for a transplant in my future. So here's to 2017 and may the new year bring us hope and joy!! Happy New Year!!!

Sick and Tired of Being Sick and Tired

I must apologize for the brief break I needed to take from my blog. After receiving the news last month about my transplant being postponed indefinitely (or until I get back into remission), I had trouble accepting the setback and needed to rekindle my flame of strength going forward. The first round of chemo since I came back from Europe was rough seeing as I wasn't mentally prepared for it. Not only was it mentally draining, but physically it made me very weak and for my first off-chemo week I became very sick with a nasty cold.

By the time I started feeling somewhat better, I went in for my second round of chemo. This round wasn't too bad...mainly because I celebrated my 25th birthday (which I wasn't originally planning on doing at home) and had the perfect distraction of decorating the house for Halloween...even though we hardly got any trick-or-treaters. The much-needed distraction started to pick up my spirits, and so I decided to call my oncologist to set up the "Take Two" PET-scan. However, the response was not what I was anticipating at all.

My oncologist started asking me the usual questions..."How are you feeling?"...."Have you noticed any new lumps?"...etc. I told him that everything was the same as usual and that nothing new had shown up. Besides the little hiccup of a cold and the usual fatigue, I felt ready to take on the PET scan and get the show on the road. Then after a brief pause on the phone, he said, "I think it would be best if we proceed with one more round of chemotherapy."

I wanted to throw the cell phone across the room. He explained that right now he's very optimistic about how I'm responding to the chemotherapy but that Johns Hopkins is very uncertain about moving forward, in fear that I am becoming immune to the treatment. He thinks that if I were to proceed with the PET scan now, it wouldn't be convincing enough to sway them otherwise. So he suggested that I do one more round (another 2 treatments of chemotherapy) and then set the PET scan for the 28th of November. 

Knowing and trusting my oncologist 100%, I agreed to proceed this way even at the risk of weakening my resolve. So instead of preparing for a scan this week, I'm stuck at home once again recovering from the fatigue plus the additional side effects from the flu shot I got at the same time as chemo this past Friday.

I hate feeling bored and useless. I hate this constant lingering around and waiting for a finish line that's only pushed back further and further away. I have no regrets, but the circumstances are not ideal. I'm incredibly grateful for the support system I have between family and friends, but I feel like I'm missing something. Once again I feel like I'm trapped inside a glass box watching my friends move forward to bigger and greater things...jobs, weddings, families, etc...and I'm just stuck. With the lack of energy, I'm not exactly able to go back to work. Going back to school would be very risky...practically impossible if I somehow go into transplant at the end of the year. So all I can do is wait.

If there's one thing I've definitely learned these last few days...it's that I'm sick and tired of being sick and tired. So I've decided to focus on the little victories of every day. I've been studying and perfecting my French. I've even resorted to taking free (non-credit) online courses provided by Yale to prepare for the day I (hopefully) do go back to finish school. I try to maintain my strength by doing small exercise routines every day. I'm trying to read more, and I'm catching up on missed movies and shows. Whenever I have the strength, I try to go out and do something productive...whether it's going grocery shopping or hanging out with a friend. They are small goals but I'll do whatever I can to pass the time. It's the only way to feel close to normal.

"Life doesn't discriminate between the sinners and the saints; it takes and it takes. And we keep living anyway; we rise and we fall and we break and we make our mistakes. And if there's a reason I'm still alive when so many have died then I'm willing to wait for it." 

                                                ---"Wait For It" by Lin-Manuel Miranda