My Journey Through Aplastic Anemia

I was out to dinner with my girlfriends a few months ago and casually mentioned losing my hair due to chemo (ya know, normal GNO conversations). One of the three girls that didn’t know me as well looked completely shocked because I guess it had slipped my mind to ever bring it up in conversation that I had been through such a life-altering season of life. I tried to casually explain the whole ordeal without bringing down the entire mood of the dinner when one friend stopped me and called me out that this is something I never talk about.

I had to stop and think about this statement because it’s not necessarily false, but it’s more so that I don’t really ever think to bring it up in conversation.  It was a traumatic part of my life that I survived and am so thankful to have walked through (yes, you read that correctly), but if you don’t ask about it or it doesn’t pertain to the subject at hand, it’s not something I really talk about anymore.

Fall 2012

When I was 19, I started to feel less and less like myself. I was always a super outgoing person, filled with energy — like most 19 year olds are — but out of nowhere I was tired all of the time and required 12-14 hours of sleep to even begin to function. Friends and family were concerned, some thought I had mono even, but I knew that something bigger was going on. I brought up my symptoms to my physician during a physical and she ran the usual blood work to see if anything was out of the ordinary. Well, something was. My platelets, red blood cells and white blood cells were so incredibly low that she advised and referred me to see a hematologist (blood specialist) right away because “if I were to get cut or get in an accident, my counts were so low that I risked bleeding out.”

We bounced around from hematologist and specialists for what felt like forever. I’ll spare you the story of the mal-practicing hematologist that scarred me for life, the three month long migraine that made me want to drop out of college (I didn’t), and the constant passing out that made my family and friends worried to leave me by myself, but after finally visiting a hematologist that had enough sense to know that my issues weren’t blood-related but rather bone marrow-related, I was referred to a specialist at Texas Oncology.

Summer 2013

Within half an hour of my first appointment with Dr. Bhushan (a legend, really) he diagnosed me with aplastic anemia. It’s a rare bone marrow disease where the bone marrow and stem cells are damaged causing a deficiency in red blood cells, white blood cells and platelets. The cause of my diagnosis was idiopathic/unknown. He had a treatment plan in place and it was such a breath of fresh air after bouncing from hospital to hospital to finally have an answer to what was wrong with me. By this point in my journey, I was 20 and missing out on normal 20-year old things because of how lethargic I was no matter what I did and I lived in fear because of how this disease and its symptoms were impacting my well-being. We spent the summer and fall of 2013 preparing for my transplant which involved countless tests, blood and platelet transfusions and finding a donor.

There were so many miracles that took place throughout this journey, but the main one is that my older sister, Olivia, was a perfect match to be my bone marrow donor. From the outside looking in, it seems obvious that my sister would be a match for me, but statistically speaking, it’s rare that a transplantee can find a donor within their family. It’s also makes it extremely rare as a woman of color to find a match.

Spring 2014

My official transplant date was March 6, 2014. The days leading up this were grueling. I went through several rounds of chemotherapy. Seven days straight. I popped blood vessels in my eyes from throwing up so hard. The chemo was so harsh that they shut down my ovaries (very medical terms being used here) with a 9″ needle in my leg since I ran a risk of not being able to carry a child due to the chemo. Horse-protein treatments (ATG) were also a part of my transplant prep. My face was so swollen due to rejecting the treatments and there was a rash all over my body. Even still it wasn’t considered an adverse effect and I still had to continue the treatment until my transplant. This is without a doubt the hardest part of my story to tell because my body was literally being broken down to prepare for the new marrow that would save my life. After my transplant and a couple more weeks in the hospital, I was released in record time to continue recovering at home.

I did end up losing my hair. My amazing husband, then boyfriend, shaved my head and made me feel more beautiful throughout this part of my life than I deserved.

Some of the details are fuzzy, but one thing I’ll never forget is how God showed up for me and my family during this time. Even when I felt abandoned by God because He didn’t heal me from this disease, I felt more loved and known than I ever have because of how He carried me through to recovery. Tomorrow I turn 5 in transplant years and every single day I am thankful for new life. I catch myself getting a headache and immediately have flashbacks to my quarter of a year migraine, and I’m always so grateful when it dissipates. I was extremely healthy when I was diagnosed and this hit me out of nowhere. Now that I’m in control of my health, I never take it for granted because I remember what it feels like to have no control over how I felt.

My life and health now are relatively normal. I have extremely dry lips which I chalk up to graft versus host disorder (a common transplant side effect), poor circulation which makes it hard to workout sometimes, and sometimes it’s challenging to stand for long periods of time, but even still, life is so much better. I’ve ran a couple half marathons, championed women on their own health journeys, and have become a wellness advocate over on Instagram and right here on RSG.com.

I’ve been blogging for what feels like a lifetime and I shared some of my journey on my former blog. You can read more of how I walked through this season here:

Living with Aplastic Anemia

2 Days to Transplant

A Spirit of Gratitude

3 Months Post-Transplant

If this story moved you or spoke to you in any way, would you consider becoming a donor? It’s free and easy to sign up. Though I’m one for the theatrics, this really is a matter of life and death for some. I also am committing now to do my part to talk more about my journey through aplastic anemia, surviving a bone marrow transplant and empowering others to make informed decisions to become a donor. Thanks for following along the journey.

Tomorrow marks 5 years surviving this bone marrow transplant and I am so excited to be celebrating LIFE! If you’re a bone marrow transplant survivor, I’d love to connect. Shoot me an email anytime: hello@rachelsymone.com

RSG

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