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

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

Dear Sir...

I have thought very long and hard about writing this letter to you, but can no longer hold myself back. I just have this feeling like it needs to be known just how much you have changed my life and the perspective of it. As an avid musical theatre actress and HUGE fan of your work, you have inspired me to continue my work in the arts despite the hardships currently facing me. My name is Maddie and I'm 24 years old. I remember watching the Tony's when In The Heights won best musical...it was the same year I got involved in my high school's drama department and I got my first lead role of Vi in the musical Footloose (a show I hear was a favorite of yours as well). I remember being totally blown away and thinking that you were going to go on and make some great work in the future to come. Little did I know you would be satisfying my obsession with the Revolutionary War history in musical format.
When Hamilton first came out I was immediately struck...not just by how perfect the music and lyrics were...but how diverse and unique it was. I actually made so many attachments to characters like Lafayette (I'm French dual-citizen) and Angelica because she stands for equality and isn't afraid to voice what she believes to be true even when others shirk. In a world that is growing darker and darker, your work made it seem less dim to me. I believe in hope more than anything because of you.
I don't want to make a sob story out of this but I was diagnosed with Lymphoma back in 2015 just when Hamilton took flight. As time went on, my cancer didn't respond and only progressed...however I kept fighting. Every time I went into treatment I would listen to the music from Hamilton and even got one of my nurses into it. We'd rock out to "My Shot" because I wasn't going to let cancer take away my shot at life.
Since my diagnosis, I've been writing my own music and lyrics (currently working on an Agatha Christie musical). Your positive messages on your Facebook account are always a pleasure and a joy to wake up to. Everyday I sing away the troubles, sometimes alongside the mixtape. I even wrote a blog to try to reach out to others fighting battles such as my own, and I often drew inspiration through your music and words.
This past month though was a particularly hard one for me...I was told that none of my treatments have worked and my cancer is now incurable....and the first thought to go through my mind was "I am not throwing away my shot"...I told my doctor that I wasn't giving up and have already signed up for clinical trials....even if it kills me. But it's the spirit of Hamilton that has kept me going...
I guess all I'm trying to say is 1) thank you for reading this if you have and 2) your work and all that you do has had such a positive impact on my life, and I don't think I would have gotten this far without you. Even if you never read this letter, I simply had to write it anyway because you deserve so much recognition for turning me into the positive fighter that I am today. Thank you for all that you have done, all that you are doing, and all that is to come from your creative genius.
I have the honor to be your most avid fan-girl,
Maddie S.

Detox

Just figured I'd post a little blurb on here with an update. After my sob story last month, I had a lot to think about. Obviously.

As I stated before, I am NOT giving up and I'm going to keep fighting to the bitter end. So rest assured I'm not just kicking the bucket and watching the days go by. My oncologist told me that I'm supposed to be hearing from someone at NIH about the enrollment for a clinical trial. It's a trial called the "CAR T-cell Project"...no idea what it stands for, but I did get a brief low-down on the details when I met with them last fall. Essentially it's pretty easy. After taking self-injections for at least a week (yay...), I go in one day and have two catheters put in (one in each arm). Through one catheter they withdraw blood and it goes through some kind of machine where they separate the T-cells. They return the leftover blood through the other catheter. Then over 2 or 3 weeks, they genetically modify the cells to attack my cancer. They return my cells (I'm assuming through an IV) and see if it works after about a month. It sounds TOTALLY cool and super sci-fi but I think they are on to something.

While I'm waiting for that phone call from NIH, my doctor and I are trying to look into other clinics around the country if NIH can't take me asap. During this time I've also been trying to eat SUPER HEALTHY. Not just fruits and veggies but I've been looking into supplements and vitamins. I figured I'd give anything a try in order to slow any progression or see if I have any luck in decreasing any cells. I'm desperate for a miracle and I won't go down without a fight.

So I'm currently detoxing this week and boy is it a KILLER. My body is showing all the usual symptoms of detoxing (minor skin irritation, body aches, bloating, and general irritability) but it's draining on me. Don't get me wrong, I'm not overdoing it...I feel like it's necessary to cleanse after having all these toxins roaming in my body. It's just....I can't seem to stay focused. I even got angry at my blender while making a shake last night, because I was so frustrated that I couldn't figure out how to put the lid on. Waking up this morning I had one mission...to search for new motivations to keep me going.

First stop was Hot Topic and I got a new carrying bottle for my shakes...it's a Deadpool design. For those who live under a rock or don't care for superheros, Deadpool is an anti-super-hero who is a cancer survivor and finds humor in everything...my hero through this nightmare.

Then I made a stop for a new heating pad that was on sale at Bed Bath and Beyond, because last night when my back decided to scream for help, my heating pad conveniently disappeared. And once I finish this post, I'm going to be bold and write up a message to one of my idols. He has inspired me to write what's on my mind and in my heart, and his music has been my rock through this whole journey...I'm speaking of none other than the genius himself...Lin-Manuel Miranda. My letter to him will be posted here, in the impossible miracle that he may see it one day.

Numb

I knew something was wrong when I ran into my chemo nurse, and she gave me a hug and hinted at getting me impossible Hamilton tickets. I had an appointment with my oncologist to discuss the results of my PET scan. I told him I didn't want to hear anything through email or over the phone and would wait until I see him in person. I went into this appointment already expecting the worst and hoping for the best. I just wasn't really prepared to actually hear it being said to me.

Excuse me if I sound very blunt. I'm still very numb and recalling what happened makes me want to burst into tears, but it's an important chapter to this adventure and I figured I'd document it here. So after waiting a good long while, my doc comes in and broke the news as gently as one could. He said the treatment didn't work and we are looking at an incurable cancer. The cancer only progressed and even started attacking my bones. My only option is clinical trials at NIH and there are no statistics. I'm in a grey area where I don't know what will happen and how long I have anymore.

As I was hearing all these details of how my odds are low and that this treatment is solely to prolong however long my life may be, I started to drift into my infamous daydreams. I thought to myself that this is kind of like going into a duel. You are facing the end of a gun just a few feet away. You don't know if it will hit or miss. You don't know if you will die slowly, instantly, or escape it all completely intact. It's a risk and once the gun is loaded there's really no going back. I've heard the gun click and bracing for the worst and possibly the unknown. You start to wonder how people will take the news or what legacy you leave behind. But you can't show it...you can't be a coward and run away.

That is the best way I can describe to you how I felt and how I'm still taking the news. Apparently I'm a walking contradiction since I look and feel ok despite the increase in cancer. My doc says that I'm in the best shape to be going into this clinical trial so there is still some hope and I'm not giving up. I will fight this to the bitter end.

But facing ones mortality is truly a struggle that I'm still trying to understand. I feel like I haven't done enough. I feel like I have so much more to do. I want to travel and meet people. I want to go back to school and step back on the stage someday. I am worried about my family and how they will cope with this news. I feel like I've made more mistakes than accomplishments. I don't feel like I've had a chance to make an impact and make a difference. I don't want fame but I want to feel like I succeeded in any of my dreams. God only knows I've been praying and praying and yet I'm given all this!! It makes no sense to me. It's not that I fear death but I fear the lack of what I leave behind.

It's just a lot to take in and the wound is still very fresh. As I said, I will keep on fighting...but I need your help. Please...whoever is reading this...say a little prayer. Not just for me but for my family. Say a prayer for those who are also dealing with horrible news like this as I am not the only one suffering. Say a prayer that one day we find a cure and that future families will never have to face something like this.

Mindfulness and Meditation

Uh oh...Maddie's gone MIA again. This time there's really no good explanation why besides just being lost in my thoughts and neglecting to document them. After my week in hell I kind of went into a "hibernation" of thoughts, fears, and seclusion from the world. There was a good week where I just didn't want to do anything. I kind of cut myself off from the world in order to process all the horrible news and doubts I got from the doctors and specialists. It was a blur really. I found it very hard to really take in everything, and guilt started creeping back into my life for having to get my siblings involved with my future transplant now. I felt horrible for my parents who had to take in the information and face the unknown. After the roller coaster of being told either I'm going to be cured or die...I just didn't know how to take this anymore. So I hit my shut down button and turned in on myself.

After a few days of hibernation, I started to be somewhat more active. I took my mom to Gettysburg, took up therapy again, and started attending a "mindfulness and meditation group" which really helped sort out my thoughts in a calming manner. In all honesty, I think I might have been lost without this group. My hair had continued to fall out to the point where I had to completely buzz it off. I also became very weak and my appetite disappeared. If I hadn't joined this mindfulness group and taken up therapy again, I probably wouldn't be here to write on my blog anymore. I would have given up.

The group even helped me get to a state of confidence when faced with my next obstacle...my new treatment. My first immunotherapy appointment was coming up and I went into it thinking "well I've gone through 2 kinds of treatments...I know everyone in the infusion center...I know I can do this and I'll just take whatever symptoms come with it".....little did I know this would be an ordeal on it's own.

I went to my first appointment with my head held high. I greeted the nurses there as if I had just seen them yesterday (it felt like I had). They got the needle into my chemo port with ease, but there was an issue with the blood return. After a few flushes and a little bit of time, they fixed the problem. I was then told that because it's immunotherapy, I didn't need any premeds (chalky steroid pills that keep me awake for hours) and they started me right away on my hour long IV drip. I started watching the news of Hurricane Matthew on their little TV system they have for patients...when all of a sudden I realized I couldn't take a deep breath. At first I just shrugged it off thinking maybe it was my anxiety...and then my breathing got shallower and shallower. I was becoming flushed and had just enough breath to call the nurse over and tell her I couldn't breathe.

All of a sudden it was panic in the infusion center. So many nurses rushed over to take my vitals, put an oxygen mask on, cut off my IV, and call over one of the oncologist to diagnose the situation. Apparently this drug was causing my veins to constrict and they had to administered a drug to fix it. They said I would need to take this as a premed before each of my treatments (darn). Once I was off the oxygen mask they started me up again on my treatment and before I knew it I was done. But since I had never had a breathing problem ever in my life, I was totally scared going to sleep that night...thinking I would go to sleep and stop breathing in the middle of the night and not wake up.

With a little meditation that I had learned from the group I was able to coax myself to sleep and haven't had an issue since. I may not be back to the mindset I was before my week in hell, but I can definitely say without a doubt that thanks to meditations, I am so much more better off than I was before. Sure I have my low points and dark moments but I truly think the positive outweighs the negative. We all have to find things to laugh and smile about. Every once in a while we just need to breathe and take notice that we are. I think everyone, not just cancer patients, should take a moment everyday and just look at themselves from the inside out, breathe, look around, and realize how lucky they are to be alive.

"Look around, look around at how lucky we are to be alive right now!" -Hamilton the musical

Wait For It

Well the results are back folks!!! 

I got an email from my oncologist at 11pm last night saying the pathology came back...and we're looking at the same Hogkin's Lymphoma which means...NO HYBRID!!!!

This is brilliant news because at least we know what we're working against and the outlook seems mostly clear. Considering I had taken an entire month to do my fertility treatment, there is the likely possibility that these new progressions actually formed during that time. So my oncologist sent my pathology report to a specialist at NCI for a second opinion...during which time I'm going to continue my immunotherapy treatment one more round. Then I repeat the PET scan next month to see if there is any decrease. I'm so relieved because if there is a decrease then I'll hopefully be in remission by the end of the year and start on the new chapter of this journey...the bone marrow transplant. Although that chapter is scary to think about, I'll be happy to get it done and over with so I can move on with my life.

As I've stated before in my blog, I'm kind of in this waiting cell as I'm fighting this curse. Everyone around me is going about moving on, forming families, achieving dreams, working, and going about life...and I'm on the sidelines watching. But as the character Aaron Burr in Hamilton states "If there's a reason I'm still alive...then I'm willing to wait for it"...if everything goes as planned and I'm in remission by the end of the year then I'll be one step closer to TRULY living again. Until then, I watch the hours pass while the list of things I want to do grows. I might feel very much alone and secluded right now as people in my life are moving away, but I know my time will come to move on and start a new, happier journey. I'm willing to wait and fight for that.

I'm beginning to realize why people call a bone marrow transplant a "rebirth". It's not because you have no hair or you have to build back your strength and immunity. It's because you are now relieved of the curse of cancer and can not only resume your life but start things over. I originally was majoring in theatre at college, but this cancer has put a GIANT perspective on life. I want to use my talents to help others who are in my current situation. If I am given the chance of a "rebirth" I will change my major to music therapy. It's not only a successful career option, compared to theatre, but it's something I would enjoy doing as I would be helping bring smiles to others in need.

There are also many other things I'm waiting to do. I want to go out and meet people. I want to travel and learn about the many worldly cultures. I want to try to make a difference with whatever I have left on this Earth. I want to eventually have a family of my own. All of these are things I'm willing to wait for. People say "patience is a virtue"...well cancer patients know that all too well. Whether it's waiting for a diagnosis, treatment to be done, or for that confirmation of remission...strength and patience are what we learn best from it all. And it's hard to come to terms with that especially when we feel weak, helpless, or alone...and that's why I form a list of reasons to keep fighting. Afterall...I'm the one thing in life I can control.

Inspiration I got for this post is from the amazing musical Hamilton...check out this beautiful song:

https://www.youtube.com/watch?v=ReTP6x_sDiM

Quite The Setback

I don't really know how to start this post besides saying I didn't see this coming. I mean I had my worries that my cancer would come back farther down the line, but I don't think anything could have prepared me for the news I received after this PET scan I had at the beginning of the week. This scan was supposed to be the green light towards my bone marrow transplant. It was supposed to show me either in remission or on the way to remission. Sadly that wasn't the case for me. Despite the immunotherapy, which is supposed to be highly effective for cases like me, it isn't working to the highest degree. It's successfully killing off the cancer cells that showed up at the beginning of the year, but at the same time new progressions of cancer are forming during my treatment. I'm in that 1% of unsolved cases again. It's beginning to appear obvious that my body is seriously trying to kill me.

My oncologist has no explanation for why this is happening and I have to go in for my THIRD neck lymph node biopsy in a couple weeks. This biopsy is to see if my cancer has mutated into some kind of hybrid which can happen in rare cases of my immunotherapy treatment. In the meantime I continue to do the same treatment since it's not killing me and partially working. After the biopsy my doctor will determine what treatment to proceed with...whether it's a different drug, a mix of my previous chemo and immunotherapy, a five day infusion of a harsher chemo, or a clinical trial and hope for the best. At the moment my bone marrow transplant is now postponed until who knows when since you can't get a transplant until you are in remission. I had just started getting my head around the transplant process and had the mentality of "well this time next year it will all be over with"....now I'm back at square one.

I spent the first day after receiving this news just bawling my eyes out. Now I'm going through a stage of anger and disappointment with my body. I've already wasted almost two years to this curse of an illness...while everyone around me is going on with their lives (finishing school, working, getting married, having families) I'm stuck in some sort of limbo. All the while everyone is giving me the broken record of "stay positive" and "you'll get better" but after hearing this twice and getting disappointed both times, I find it really hard to let that sink in again. I hate feeling defeated and being forced to pick myself up again. So I'm not going to look at this like I'm definitely going to be cured. Don't get me wrong, I want to be in remission, but I can no longer look to the future like I had been. This is now a war that needs to be taken one day at a time until I win...and I will win.

So now I'm making weekly plan sheets where I plan out each day with what I can do in terms of my energy. Most of the days I will spend studying, reading, watching documentaries, compose music, and learning everything I can. If I can't go back to school any time soon then I'll study at home. And even though my social life is diminishing slowly, I'll do what I can to stay upbeat. I will try to get more involved with my support group and other activities they can offer while I'm still feeling ok. I even found a children's hospice not far from town that I am looking to volunteer at and hand out my Happy Bags. I might even bring my ukulele and plunk out some tunes. Haha! My oncologist told me that not just being positive helps defeat cancer but having a sense of humor is key. If I can keep my attitude up and make others smile, laugh, or have a good time then that can help them AND me. I need to maintain this and as long as I do, cancer can't get the best of me. And as I've said before, my motto in life is a quote by Charlie Chaplin...."A day without laughter is a day wasted." Let's not waste any day we have. If you spread joy then you reap joy. Just something I think we can all work on during such struggling times.