Crushed

I'm still at a loss for words after what happened this past week. I'm still trying to cope. I'm still grieving and still very bitter. My body is quite exhausted after all the stress I have taken on and everything I went through, that it's been a struggle every morning to get out of bed or even talk to friends and family members. I understand everyone is concerned and trying to find solutions for me....but at the moment I just need to breathe, gather my thoughts, and build myself up again. I feel like people are shoving things down my throat, telling me what to do and what not to do with my body...telling me I need to do this and that....criticizing me for doing this and not doing that. I'm not avoiding people...I just don't have any words and I'm still very numb. Even the tiniest things set me off now. I feel broken, my body crushed.

I found out that the reason I would have to wait 6 months to do this clinical trial is most likely because the numerical sequence found in the cancer that the T-cells would attack, can also be found in the uterine lining in women who have normal estrogen levels (which I have despite several treatments I've done). Therefore, to prevent that attack and my possibly bleeding out during the procedure, I would need to do lupron shots or some kind of hormonal therapy for 6 months to prevent the numerical sequence from showing before I undergo this type of clinical trial.

I don't know if I have 6 months. I don't know if it's worth the wait. People are telling me "oh just get a hysterectomy"...but I don't think people really understand how that was never supposed to be on the table, it will definitely have an impact on me as I'm only 24, and I'm not mentally prepared to even consider it yet. I have sent out 2 emails desperately asking my oncologist to send me any other options in terms of treatment...I have been waiting by the phone all day with nothing so far. I'm waiting to hear from the nurse at NIH to see if I can have my scans sent over so I don't have to wait another month and a half to have another PET scan (as the one I had was unnecessarily done in the end). I'm looking into other places, but it would be nice to hear back from SOMEONE before I make any decision on what to do next.

So here I am stuck in this limbo...waiting...impatiently...riddled with anxiety. Wondering how much my cancer has already progressed over the course of the past month or so. Wondering what options are left for me...if there are any. I'm so much more scared than I've ever been and trying not to let it show 24/7. I can't sleep well because of that. I'm trying to hold onto what little strands of faith I have left, but I feel like it's slipping through my fingers. I know I'm not alone but oh how I feel it, all the time now.

NIH Update

Just as I posted my last blogpost, I received a call from NIH. It was a call I was hoping never to get. Despite the screenings and tests I have already gone through...I was told I can't partake in the clinical trial after all. Apparently they need me to be on hormonal therapy with my gynecologist for 6 MONTHS before I can be on any clinical trial. So after all of the processing, tests, scans, the mental preparation of the upcoming month.....I'm told that it was all for nothing. I was ready for it and on the eve of the first biopsy with the trial starting on Monday...I'm told I can no longer do it. And the doctor even had the nerve to say "Oh I understand how upset you are".....I actually started to yell back on the phone. No they don't. They don't understand that I waited a month to hear from them after finding out my cancer was practically terminal and that this was my only hope. They don't understand that I said yes to a clinical trial knowing full well it could potentially speed along death in the hopes that I might live. They don't understand the impact this decision has had on my family and how it was literally the only prayer answered...now taken away. I am a mix of so many emotions right now and I can't even compute it all right now. I need time but I don't even have that. I have already sent a message to my oncologist to see if there is ANYTHING I can do and begged for help. I will even travel to the ends of the earth for an answer. But this is the biggest setback I've ever had and I feel incredibly hopeless.
So please disregard that last post...it means nothing now.

Iron Man Saved The Day

One day before my lymph node biopsy, and I have already had a major break down. I knew from the moment I got my schedule of this whole ordeal that this week was the first week of this hellish month. It started off easy with simple blood work, CT scan, heart ultrasound, a trip to see a dermatologist and an endocrinologist...all things I was able to do on my own. This was just the calm before the storm.

I left the house, with my mom, at 6:30 in the morning in order to reach NIH by 8am (traffic's a killer when you live out in the country and have to go into the city). I dressed for the occasion with my Deadpool socks on...the thought of "get it over with" racing through my mind. First I had a PET scan...I've lost count as to how many of these I have had in the past. For those who don't know what the protocol is, you are taken back into a room where they test your blood sugar (the finger prick test) and then hook you up with an IV. Next thing you know, they are giving you an injection of radioactive tracers and then they leave you alone for an hour so the tracers can work their way around your body. Then after an hour goes by you go and get a full body CT scan. This whole process takes about 2 hours. 

Anyway, I was getting my IV hooked up, and for some reason I started to become anxious and teary-eyed. When the technician (who looked to be in his 50's) asked me what was wrong, I told him that I was very nervous and quite scared about my upcoming clinical trial this next week and how it's incredibly risky. He then responds with "I know how you feel...my mother is having heart problems and will have to do a clinical trial"...my jaw almost dropped, and not because of his mother. First of all, you don't tell a cancer patient "I know how you feel" because 99% of the time YOU DON'T. Every cancer case is different and everyone handles it in their own way. Secondly, he was comparing me, a 24 year old facing a terminal diagnosis, to his mother who I would assume is over the age of 65...WHAT?!?!? That was enough to set me off first thing in the morning.

After I got through my PET scan and met up with my mom in the cafe for a light brunch, I had to make my way back to the radiology department where a nurse could check my veins to see if they would be ok for the upcoming trial. Now I had been told by the research nurse a few days ago that I will most likely not have any complications here and have no need to worry...therefore I didn't think much of it when I walked over to the appointment. Unfortunately...the moment I sat down and the nurse looked at the veins in my arms and hands, she told me that they wouldn't be able to put catheters into my arms for the clinical trial...instead I would need to have a catheter line surgically inserted into my neck or groin the Monday morning before I start the 4-6 hour long clinical trial procedure.

At this point I had just about had it. I pulled my beanie over my head so no one could see the pure anger heating up on my face. I literally wanted to scream. Here I am, trying to be strong, trying to be brave, doing what I have to do in an attempt to save my life...and yet it feels like no matter what I do, nothing can stop this snowball of bad luck/news from growing. I'm already trying to wrap my head around the fact that despite having a chemo port implanted in my chest, the folks at NIH want to put a picc line (an implant catheter) into my arm for extra measure. Now I have to go an extra mile to get ANOTHER procedure to get a catheter placed in my neck. Not to mention I still have no idea what the timetable is for this upcoming week, I don't know my odds, and my family is struggling with the possibility of my having complications. I immediately broke down and I wish I had a pillow to scream into.

Finally I had one last appointment for the day...an MRI. I had only had one of these before and it wasn't a pleasant experience as my ear plugs fell out half way through and the technician didn't want to stop to help. I had to lie still with the clanging noises blasting in my ears while stressing over the thought of having cancer at the age of 22. When I was brought back to get my second IV hooked up for the scan, I told the tech everything that had happened before. I was kind of an emotional mess remembering that and also because of what had happened at the last appointment. He was very quick at reassuring me by giving me a buzzer to press in case that should happen, so they could stop the scan and help me. He then put my ear plugs in and placed a rather comfy set of headphones over top. I joked saying, "You should hook up some music to these!"
To which he replied ,"No problem! What music do you want us to play?"...in disbelief I said ANYTHING!!! He laughed and asked me what genre of music I like to listen to when I'm down. I blurted out classic rock. All of a sudden I started hearing music in my ears...and through the welled up tears I started to laugh as well. The moment came when I was told the scan was going to begin and just as the table started rolling me into the machine I heard it.....
"*click* *click* *click* *click* I AM IRON MAN!!!!".....I found my strength again.

I left that appointment feeling so much better thanks to the AWESOME experience the technicians gave me. I even gave them high fives on the way out. Not only was this day ending on a better note, but it gave me new confidence going into this. This month is only going to get harder, each day being more difficult than the last. I'll admit...I'm scared, vulnerable, and still worried about what the future holds for me if I have one, but I'm going into this clinical trial with guns blazing and a determination to fight.

That being said...there's one thing I want to discuss before I end this post. In the past several days I've been getting a lot of people acting like I'm already on death's door...just so you know, I'm still kicking and walking on my own. I also deal with people who CONSTANTLY tell me to stay positive and don't stop fighting....as if I haven't been positive for the past two years! I never stopped staying optimistic and I have NO intention on stopping this fight. The one thing I can't stand more than that, is the people who are delusional or in denial about the severity of the situation. I am in a spot where if I don't do anything, I die...but if I go into this clinical trial there is also a 50/50 chance of dying as well...only quicker. Now I am hoping that I pull through and survive, but I'm not going to dismiss the feelings I have about the possibility of dying and just pretend that everything is hunky-dory. So to address these people and pretty much everyone...if you want to talk to me, then talk to me as if cancer doesn't play a role in my life. Talk to me like I'm still Maddie, because believe it or not, I still am. And especially don't tell me things like "oh I can't believe it's as bad as you say it is" or "you're going to be cancer-free soon enough"...it honestly doesn't help me to think like that. I think I might elaborate a little more on this topic in my next post...and if all goes well, I plan to write even more often this coming up week and the next. For now, I need to call it a night as I have my 4th lymph node biopsy to go to at the crack of dawn....yay....

Guinea Pig

It's been quite sometime since I've been able to say this on the blog, but....I got good news!! In the afternoon on Valentine's Day I got a phone call from one of the research doctors at NIH. They said they have a start date for the first round of the CAR T-cell clinical trial.

February 27th is when things will get underway. Although it's very good news, and this could potentially change my life if all goes well (50/50 shot)...I feel very uneasy about the whole ordeal after learning all the details.

Tomorrow I go in to meet with the doctors again at NIH and to get blood work done...woo....I did this back in the fall of last year when I was looking for answers, so this is the easy part. Then starting next week I begin the cycle of scans. I have to get a PET scan (so used to these), an MRI of my brain (obnoxiously loud but doable), EKG (the thing where they put stickies on your chest and they get squiggles on a paper of my heart and stuff), Eco cardiogram (which is an ultrasound of my heart), and last but not least ANOTHER neck lymph node biopsy (these are NOT fun and I've already had 3). And I may very well be getting my THIRD Bone Marrow Biopsy (which is incredibly painful, they don't knock you out, and I remember everything from the last two...even got sick the last time...so fun). Most of these scans and tests will be taken place over a day or two...I will be leaving NIH feeling miserable every freakin time.

Then first thing on the 27th, I go in to start the project. They will be putting 2 catheters in (one in each arm), and hooking me up to a machine that takes blood out of one arm, cycles it through the machine to take out the T-cells, and returns my blood in the other arm. Not too bad, right? Well the following three days I go in for chemotherapy....again.

It's a low dose of chemo so I won't be losing my hair or have to take steroids...I'll just feel kinda nauseous. During this time however, they are genetically modifying the T-cells they extracted, so that they will specifically target my cancer and kill it. The moment they are put back into my body, they will replicate and start attacking. It'll be an army of T-cells!

That same week I go in to retrieve my T-cells with a simple infusion. It's all over right? NOPE! Due to the likelihood that I will be experiencing "reversible but intense" symptoms, I have to stay overnight as an inpatient in their hospital for 9 freakin days. It's not as bad as the 6 month stay of a bone marrow transplant at Johns Hopkins, but I already feel like a major lab rat at NIH...only I've been promoted to guinea pig instead. Let's face it, I'm going to go mad.

And yes I know what everyone is going to tell me...read books, bring your laptop, watch movies, talk on the phone, etc....all the things I'm already planning on doing. But I'm a social butterfly...I need to be around people (preferably people who are not my doctors or nurses). Don't take this post the wrong way...I'm SO INCREDIBLY happy that I got this phone call, and that I'm starting on this clinical trial ASAP so that if it doesn't work, I can try it again but with bigger doses. I'm so thankful that ONE of my prayers have been answered and this has the potential to save my life...even if I am the only statistic for Hodgkin's Lymphoma. I will fight this cancer to the bitter end and will do whatever it takes to cure myself. I'm very optimistic and going into this procedure with a positive outlook...but it still doesn't fix the fear that I have going through it all.

I'm going to feel very scared, alone, and worried everyday of this procedure. I expect I will be writing in here daily while I'm staying in the hospital. I may even do live videos (if I don't look too horrendous). I hope my friends and family will keep in touch during those days, as I will most likely be alone in the hospital through a good part of it. The one thought that is pushing me forward is "well...hopefully this time next month, I may have found an answer, and it will have been worth the pain"....I hope it's true. So....

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.