My Health Story: How A Bone Marrow Transplant Was The Best Thing That Ever Happened To Me
One of the biggest lessons I have learned over the past five years is the power of Faith. A trust in something bigger than myself, an unwavering belief that I am exactly where I am supposed to be and a power in knowing that things will unfold just as they are meant to, even if it is hard to see. Trusting in this has been my greatest tool in getting through anything that comes my way. Today I am sharing what is by far my most personal story. A story that took me to the deepest depths of my soul and brought me back to the light in a way that has transformed me forever.
For a long time, I wasn’t ready to share this part of my life on Jewels of a Dreamer. It is extremely important to me that this site represents who I am, the jewels in my life, and my goal has always been to create a community of Dreamers. My health challenges are a part of my story, but while my experiences shaped who I am today, they do not define me.
I always felt like a piece of me was missing here, a deeply personal part that I needed to share. I am so honored to be posting my health story in this sacred space. If my experience helps or inspires even one person, my heart is full.
Thank you for being here.
A bit of background . . .
For most of my life, I struggled with different health ailments. From debilitating stomach pains and constantly being sick (often for months at a time) resulting in a diagnosis of celiac, to a near scare of leukemia when I was in high school. I had become used to the inside of hospitals and doctors offices.
Looking back, it is fair to say that feeling tired and low on energy was my norm; I had never known anything different. I was active growing up, always in cheerleading or dancing and moved to NYC right after high school to start college at the Fashion Institute of Technology.
Soon after moving to NYC I met Dan and started to become interested in holistic health and yoga. I immersed myself in documentaries, books and began to explore yoga teacher trainings. In June 2011 Dan and I moved in together and in August I started my senior year of college.
September 2011 . . .
It was around this time that I had been feeling exceptionally tired and out of breath for weeks on end. Strangers began commenting on the yellow color of my skin, and I was waking up with bruises all over my body. The most mundane activities became increasingly difficult. I started taking the bus because I couldn’t make it up the subway stairs and getting my head off the pillow in the morning was nearly impossible. I felt sick and lethargic but told myself it was from my hectic schedule. Living in NYC and going to school, I was just tired…it couldn't be more.
After weeks on end of what was the downward spiral of my health I was pushed by my family to get a blood test. The next morning my phone rang, and it was the school telling me in no uncertain terms to come to the clinic immediately. Don't go anywhere else, come in now. Both scared and anxious I took a taxi to the clinic. In a crazy way I was looking for validation that something was really wrong with me. How could a body that I took such good care of betray me like this? Thankfully I had Dan with me because as the doctor spoke, my mind was going in a million different directions. I heard hemoglobin 4.8, yellow skin, hematologist right away, blood transfusions and biopsies, I remember seeing my blood work and all the levels had ALERT next to them, for the first time panic set in.
I was sent to the hematologist where the doctor seemed nonchalant as he spoke about setting up blood transfusions, a bone marrow biopsy, and a hospital stay. Thankfully my mom was on a flight from Miami to New York. This was too much information for us to process. After four days in a New York hospital receiving the first of many bags of blood and platelet transfusions, countless doctor appointments, bone marrow biopsies and a variety of physicians from all specialties trying to diagnose me, I was completely frustrated with the lack of answers I was receiving.
Eventually, I went for a second opinion at Weill Cornell Medical Center. This time I had to go alone. Dan had a meeting he could not miss and my parents were back in Miami researching different options and making plans for me to come home for what eventually would be some of the darkest days of my life. My head was spinning as I entered his office. He had all of my test results in his hand. He began speaking about a 5% hypocellular bone marrow, a repeat biopsy and the urgency of the situation. He believed the correct diagnosis was Severe Aplastic Anemia also known as bone marrow failure disease. I had two options the doctor was explaining, immunosuppressant therapy or a bone marrow transplant. Neither choice sounded very good to me. From the moment I was told the only cure to my disease was a bone marrow transplant I had made up my mind. A transplant was my only choice.
Preparing for transplant . . .
There were two decisions that were made that day. It would be impossible for me to stay in New York and continue school and that financially I had to move back home with my parents and explore all options to save my life. Everything needed to be placed on hold until I took control of my health. I withdrew from school, doctor's orders and we began packing only the essentials that I needed as we started our journey home and eventually to the hospital and doctors that performed my transplant.
My parents began making appointments with hematologists and researching different hospitals. I had made a secret promise to myself not to be influenced by googling any material from the internet. I wanted to make an informed decision based on the facts of my symptoms and what was the right choice for me.
November 2011 began the first of many appointments at Moffitt Cancer Center in Tampa, FL. Given my age and health my odds were very good that I would make a full recovery. Now we needed to find a donor.
A gift from God . . .
After over a month of thorough testing, we received the call we had been waiting for. My youngest sister Kadie would be my donor, a perfect 10 out of 10 match. After this things began to move quickly and a transplant date was set. December 22, 2011 would be the day. December 15, 2011 my mom and I would move into Moffitt Cancer Center for the first day of our one month stay. That night I began chemo and ATG. I remember almost nothing from that week except feeling like I was going to die. I was told the days were filled with hallucinations from all the drugs I was on, sickness and pain. For five nights I received chemo and ATG until the day of my transplant. The transplant was Day #1 (I like to think of it as the first day of the rest of my life).
As the weeks followed the after effects of chemo began to hit me, they were strong but I pushed back. I refused to let this defeat me. My hair began to fall out in chunks and I cried looking at my own reflection. I didn't know who the person staring back at me was. Some days were better than others. Every day I pushed myself to get out of bed, to at least try and walk down the hall with the physical therapist and to eat/drink whatever I could.
It was during this time that I made it my mission to meditate and really tune-in to my spirituality so that I could calm my mind and body, especially when I felt the chemo attacking different parts of me. I remember nights when the pain felt unbearable. I would imagine a beautiful ray of light healing me, soothing every inch of me and taking away the pain. At this time I was also introduced to Reiki, a healing modality that burst me open and that I am sure helped to save my life.
For the next year . . .
My mom and I stayed in the surrounding area for 120 days. We frequented the hospital every day for medicine, blood transfusions, platelets and more. As I became stronger, the days were stretched apart. My family and Dan visited every other week. I began life with the many rules that coexist with a bone marrow transplant. No eating out in restaurants, no raw food, never wearing the same clothes twice, not being around cigarette smoke, no touching cleaning products, no going in the sun, the list goes on and on.
The first year I spent all of my time either inside or at the hospital. Many parts of that time are a blur as I reflect on the pain I experienced physically and mentally while my body worked to accept my new marrow, gain strength and heal itself.
With a long journey ahead of me, I kept a strong focus on ways to incorporate holistic practices into my healing from day one. Through my ups and downs, I did whatever I could each day to show my body love and support. I meditated, practiced light yoga, put on cute pajamas and ate nourishing foods when my appetite appeared. My determination to fully recover grew stronger every day.
What kept me going . . .
During my time at home recovering is when I decided that I would finally start that blog I had been dreaming of (but previously wouldn’t start out of fear of what others would think). Once my mind was set, I knew it would become my reality. I brainstormed names and one day in bed I thought of Jewels of a Dreamer. Jewels representing my many passions and loves from holistic health to fashion and beyond and Dreamer because I am always dreaming of what I can create and do next.
This blog, and my love of fashion, beauty, and holistic wellness helped to heal me and infused me with an energy unlike anything I had ever felt. I continued my childhood hobby of cutting up magazines in bed to make lookbooks and brainstormed what it would look like, the type of content I would share and ways I could inspire others.
Present day . . .
I spent a year and a half at home going through treatment before I got permission to move back to NYC. I had been taking online classes at home when I had the strength and immediately signed up to complete my senior year at FIT. It was difficult going back after all of my friends graduated and I felt like a completely different person, but I was determined to finish what I had started. After a year I graduated and receiving that diploma was one of the proudest days of my life.
The first few years back I was getting sick often, in and out of the hospital and would often feel completely defeated. I let myself sit in that sadness for a moment and picked myself up to keep going. I know in many ways I made things more difficult by moving back to New York post-transplant (hello dirty subway, germs and polluted air) but I also know how much stronger it has made me.
I have teetered on this imaginary line of “pushing myself” that I am still trying to understand. Moving in-between feeling incredible and not being able to get out of bed. Every day, week, month and year I feel myself getting stronger and recovering faster.
One of the biggest struggles I had (and honestly still have at times) is coming to terms with not being able to “do it all”. This experience has pushed me to become even more in-tune with myself and to stand up for whatever I need to stay healthy. Sometimes this means relaxing at home for a few days if I feel myself pushing it or having to reschedule plans. This can often feel like a serious case of FOMO (fear of missing out), but I have worked hard to shift my perspective when I start going to that place. I know there will always be time to hang out, a new store opening or event to go to, but none of that matters if I am not taking care of myself.
In February 2015 I was introduced to Kundalini Yoga which has been another life-changing tool that I have incorporated into my journey. Through my work with my teacher Taylor EyeWalker and my dedication to my practice, I have been able to strengthen myself physically, mentally and emotionally in ways I am so grateful for. Every day is an opportunity to learn something new, to grow and to handle whatever comes my way with an inner-strength that can only come from putting in the work.
I feel better now than I ever have in my life, and I don’t for a moment take that for granted.
Thank YOU . . .
Before moving back to New York, I fundraised in my community to assist me in paying for my medical bills and treatments. The outpouring of love I received was one of the most emotional and profound experiences of my life. Every single person who reached out to me, donated and sent prayers made a difference and my gratitude is endless. I am positive that I wouldn’t be where I am today without that experience.
My parents, sisters, and Dan stood by my side every step of the way. My mom stayed with me every second, never leaving my side even if that meant sleeping on a hospital chair for months on end. Dan flew up every month for upwards of a week for a year and a half to be with me. Nothing else mattered when I got sick, only that I get through this and get back to him. They always kept my spirits up, kept me laughing and their unconditional love and support brought a light into my life even on the days when I wasn’t sure I would ever see it again.
Family members, loved ones and friends near and far, every call, email, text and voicemail made me feel so loved and reminded me to keep going when I wasn’t sure I could. I am standing here, coming out of my darkest days, healthy, with a smile and new perspective because of the role each and every person played in my life.
Reflecting . . .
These past few years have been some of the most painful, difficult, life-changing, ego-busting, rip my soul open moments of my life. People often look at me like I am crazy when I tell them that my bone marrow transplant was the best thing that ever happened to me, and I wouldn’t change it for the world. I strongly and wholeheartedly believe I was going down the wrong path and the Universe needed to shake me so I could go in the right direction. And did it ever.
Every single day I make my mental, physical and emotional self-care a priority. I am dedicated to my health and well-being, and hope in turn to inspire others to do the same. Finally sharing this part of me in this space feels so energizing. I am by nature, an introvert and through my experiences, it is the more comfortable option to stay quiet and reflect. I am busting this open and excited to continue to share more and more of myself.
The amount I want to share in this space is infinite, thank you for being on this journey with me.