My Last Days: Behind the Scenes

Over the past two years I have been in contact with the wonderful team that produces the revolutionary documentary: My Last Days. A beautiful series aimed at sharing the stories of individuals facing, or that have faced, terminal conditions. It generates positive conversation surrounding hard topics and uplifts the community by expanding their understanding of joy and purpose. In early 2017 Justin Baldoni, the visionary of this production, reached out via an Instagram DM (I was shocked to say the least lol) asking if I would be interested in participating in their show. I found the thought intriguing and terrifying.

I have openly shared my health struggles for years in hopes of conveying an accurate portrayal of daily life with disease, as well as to generate positive, relatable content for patients enduring similar struggles. To my benefit, I found sharing to be an incredible decompression emotionally; no longer solely carrying the yoke of my health issues, instead, adding the support and wisdom of other patients to ease the heavy burden. However, the thought of purposely sharing my journey on a multi national television station was daunting. Would my story be portrayed correctly? Would my message be depicted authentically? After many video chats, phone calls, and text messages between myself, Justin, and the director, I decided to participate in hopes of garnering awareness for my rare condition and to broaden the understanding that joy can be found even while enduring difficult situations.

To watch my full episode click here: My Last Days Season 4 Episode 2 

Unfortunately, The CW limits their content by country. To Watch outside the United States you will need to use a VPN!

...Before we begin, let's get a few things out of the way. Noel and I have been married for just under 8 years. Yes, we really did get married at 19. (Happiest day of my life!) We both are currently 27. Yes, I am really tall. 5'10" Yes, I have lost a TON of weight since filming. lol Unfortunately, it is medically weight loss. Booooo! Remember in the episode when we explicitly talk about, "the door is closed, but at any moment that could be our life again?" Well, that door is open. Wide open. I recently had a relapse of my conditions. The beautiful valley of remission I experienced post transplant is far behind me. Only time will tell how fast things will hit the fan this time around. If you remember, it took a couple years for my lungs and heart to really crap out post diagnosis. True to my initial experience with this horrible disease, it has taken my digestive system first. I am back on a feeding tube, a Gastrostomy-Jejunostomy (GJ) to be exact. I currently run continuous feeds into my Jejunum since my esophagus and stomach no longer function enough to sustain human life. Enemas are also a staple due to severe pelvic floor disfunction. I am undergoing a wide array of medical testing to asses what other organs have been effected by this relapse.

Filming began in March of 2018, and ended in August 2018. My episodes director, Farhoud, was a passionate, kind individual who truly wanted to share my quirky and tenacious personality with the world. While we only filmed a total of about four days, they captured me, my outlook, and my personality magnificently. Because the show is produced as a documentary, the filming schedule mostly consisted of following my family and I to activities and conducting personal interviews. Including one trip to LA in Aug 2018 to film the round table discussion. The crew honestly became family. We ate meals tougher, cried together, and laughed together. Their dedication to generating an authentic story which showcased the genuine disposition of their subject was insanely amazing.

I figured I would take this post to expand on a few scenes from my episode. Remember, we filmed for 4 straight 12 hour days, and only produced an 20 minute episode. That's a lot of unused conversation!

My Diagnosis(s):

When interviewing me to explain my health conditions, an hour long conversation was cut to five or so minutes. Please be aware the five minutes aired on television don't even begin to scratch the surface of my journey with a debilitating, life limiting, horrific disease. My history is quite vast, just ask the docs who can tell my chart by the sheer thickness and number of volumes! lol Due to the final cut, the explanation of my condition was not quite portrayed in full. I have an overarching autoimmune condition called Mixed Connective Tissue Disease. This condition encompasses three autoimmune diseases with a specific antibody (Anti-U1 RNP) that creates a different line of progression than if you had the three diseases individually. The diseases include: Systemic Sclerosis (Scleroderma), Lupus (Systemic Lupus Erythematosus), and a Polymyositis. These conditions also cause multiple comorbidities (other diseases) because of the damage they cause to my body. For example, Systemic Sclerosis (Scleroderma), which results in widespread connective tissue and vascular damage can cause Pulmonary Fibrosis, Pulmonary Arterial Hypertension, Gastroparesis, and heart disease, among others. Lupus, can cause conditions such as arthritis, Vasculitis, and neurologic damage, among others. For me, Systemic Sclerosis has been the most damaging of the three encompassing diseases, wreaking havoc on my internal organs. The treatment for these diseases consisted of heavy immunosuppression which resulted in a severely weakened immune system. Due to my severely weakened immune system, when I become sick with a common cold I get very, very sick. My immune system does not know to handle the remedial task of fighting off foreign invaders and causes severe immune reactions, such as my run in with Guillain Barre in 2014. I don't talk about that particular incident much, as it was the single most horrific few months of my life. It was also the first time doctors told my family, "you need to say your goodbyes." Friends and loved ones literally drove across the state to hold my hand one last time. Needless to say, it was an emotionally scaring event myself, nor my family care to re-live. 

My Transplant:

While the variance was not addressed in the episode, you will notice the clinical trial I underwent was called by two names: Bone Marrow Transplant (BMT) and Stem Cell Transplant (SCT). Think of it like dog breeds. I could say, this is a dog, or, this is a Poodle. They are both dogs, simply, one denotes its breed. Similarly, I can say I had a BMT, or be more specific and explain the type by expressing, I had an SCT. These are interchangeable names for an overarching procedure in which a patient has their old immune system completely eradicated via copious amounts of chemotherapy with a coinciding new, immature immune system transplanted in. This is an incredibly grueling, long, and exhausting process. A Stem Cell Transplant is a subset of Bone Marrow Transplant where the hematopoietic cells are harvested peripherally instead of through direct bone marrow aspiration. This is the most commonly used method of harvest in modern medicine. My particular BMT was an Autologous Hematopoietic Stem Cell Transplant (HSCT). For more information on why this was considered a clinical trial and how it is a beneficial, yet dangerous proceeded for a treatment resistant autoimmune patient, please follow the link here: Autoimmune and HSCT

My Memory:

As a result of the detrimental levels of chemotherapy I endured over the years, I experience distressing levels of "Chemo Brain." This condition happens as a result of brain cell death from the chemotherapeutic drugs which can affect a patient long after treatment has halted. Chemo Brain can be transient or permanent - passive or aggressive. These neurologic side effects of high dose chemotherapy are common in patients, however, mine seemed to be a thicker more aggressive fog than was clinically expected. I found myself experiencing bouts of delirium level confusion, long and short term memory loss, even stuttering and dyslexia. Symptoms persisted well past my first year post HSCT. I went from someone very poised with an impeccable memory, to someone who had trouble with everyday cognitive tasks. While I consider this a minimal symptom of my treatment, and therefor my condition, my talented director found it a beneficial topic to explore. While I seem graceful and well spoken in my episode, the team had to cut out hundreds of, "what was I saying? What was I talking about? Etc." Honestly, I am amazed they made it all so fluid! (Seriously, they are so incredibly talented!) For example, the one scene where I say, "I can't think of the word," seems very stark. In reality, this was after me throwing out a bunch of words and stumbling for a solid 15 minutes on how it felt to forget. The word I so desperately fished for: frustration. 

The Sandwich:

Yes. I ate a Subway sandwich immediately after being released from the isolation unit on the oncology floor. I. Do. Not. Recommend. This. It was a dumb decision, one that could have cost me my life. Upon regaining my ability to swallow after being tube fed for almost three solid years all I wanted, all I craved, was a generic sub sandwich. You guys. I LOVE sandwiches. I straight up dreamt about them while pumping unflavored nutritional formula straight into my digestive tract for years on end. So, immediately after receiving the hour long discharge lecture from my physicians, being handed the 'life post-HSCT novel' on diet precautions, human interaction precautions, and other insanely strict precautions to memorize, I broke EVERY (I mean EVERY) rule and went straight to Subway. Located in the hospital lobby! lol Thankful, I was okay - but some patients aren't so lucky.

What you experienced in the joy-filled, beautiful 20 minute documentary created and produced by the talented crew of My Last Days is simply a glimpse; a tiny fragment of compacted stories from a grueling battle. Remember that the final product is an orchestration of my life. It does not cover the still and constant struggle while working a full time job to afford reliable health insurance. It also does not reflect my current medical situation, which includes the reintroduction of a surgically placed feeding tube due to relapse. It does, however, exquisitely and unequivocally share the joy and reverence I feel for this beautiful mess I call life. I could not ask for a better portrayal of  such a miraculous chapter of my life!

Thank you to Justin, Farhoud, Ahmed, Krista, Sarah, Cat, Drew, Scott, Jamey, Josh, and everyone else who made this possible and for your dedication to create an authentic and uplifting glimpse into Noel and I's bonus years! I will never be able to adequately express my gratitude for the gift you have given myself and my family. I also want to take this time to acknowledge the other cast members. Travis, who is in chronic rejection from his second double lung transplant and is now waiting on a third - and of course the inspiring cast members who have passed away since filming began; Jessica, Shannon, and David. Thank you for spending your precious limited time sharing your messages of hope and tenacity with the world - and thank you to their families for their willingness to share their loved ones with us all. I am so humbled to be a member of the My Last Days family.

My Last Days Season 4 aired May 22nd 2019, May 29th 2019, and will wrap up June 5th 2019. My episode is featured the second night, May 29th at 8pm. If you missed an episode, don't worry! Simply go to The CW's website or the Google play store / the App store and download The CW app. (It is free!) Choose My Last Days and enjoy! Each episode will be on the app/website the morning after it airs. The episodes in order are Jessica & Travis, Chanel & Shannon, Dave & Discussion.

For all previous seasons and episodes, click here: The CW Shows- My Last Days