It’s March, my diagnosis anniversary month. March 30, 2004 – almost 21 years! That seems surreal to me.. given 3 days to living 21 years. It has been such a long 21 years all while passing in a blink of the eye.

The uncertainty has never fully left me – the Uninvited Guest has remained. There has never been even a few months without blood tests, bone marrow biopsies, CT-scans, MRI’s, Nuclear medicine scans, PET scans, bone density tests, EKG’s, EEG’s, injections in my lower back and knees, biopsies from several places on my body, countless trips to the dentist to try and save my dying teeth (arsenic is no joke!), a few fun hospital stays due to cardiac events, specialist appointments, etc. So many diagnosis’s: Dementia (incorrect, but that was a scary time!), MS (incorrect), and a few more that have brought me to full-circle moments where I have been reunited with the Fellowship of the Afflicted. A couple of new buildings, new humans, same smells that transport me back 21 years…

In 2023… no, we need to back up a little bit more… In 2014, I started having trouble with my bones. The pain was intense. A new drug trial was started, but it was stopped in just 4 short months due to complications. In 2015, my Core Four moved from Denver to Greenville, South Carolina. The move was physically difficult and I needed to quickly establish a new medical team. From 2015 – today I’ve had so many physical adventures and, to be honest, have believed myself to be a burden to my loved ones. Not looking for sympathy here… just stating my emotions. My Core 4 has NEVER made me feel this way! These feelings came from… well, come from a small but persistent voice in my head.

No one ever told me how to go on living after being a medical miracle.

No one prepared me for living in a body that had gone to war, which it won, but was now barely, and literally, limping along in uncharted medical territory.

In 2023, I began having unbelievable bouts of fatigue which prompted an extra visit with my oncologist. He ordered a large panel of blood test. The results showed that my red cells were no longer cooperating. That news was a bit surprising and, honestly, equally comforting and terrifying. It’s always good to know what’s wrong and have a plan to attack it… but terrifying that new transfusions would be necessary. This is was my first revisit to The Fellowship of the Afflicted and, thanks to Covid, I couldn’t bring my Rock to that first visit to the infusion room… I was quite apprehensive… it was scary

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it was magical. Don’t get me wrong, it was still scary, but definitely magical. Turns out, my current oncologist had a long phone conversation with my original oncologist. Once they were on the same page, my current oncologist went on the hunt for the “perfect nurse” for me. So, once I was checked in and settled into my room, a sweet and energetic nurse wheeled over the crash cart, plunked herself down on a chair and said, “Hey Aimee! I recently moved here from MD Anderson in Texas and worked in their blood cancer department. I am very familiar with the chemo therapies that you were taking and have spoken with [current oncologist] and he has filled me in on everything he learned from [original oncologist].” She started the IV, hung a beautiful bag full of iron rich blood product and then stayed with me for the entire transfusion. She did this every week.

In 2024, my red cells were still not cooperating (they still aren’t, and have since been joined by my white cells – like they’re having a blood party and forgot to invite me… rude.) So, my oncologist wanted me to see my PCP about finding a Rheumatologist. Well, I didn’t have one of those on my team yet so… Flash forward a few months and we have a diagnosis that explains everything from 2014 to today.

Which leads me to my most recent return to the Fellowship of the Afflicted. It’s a new building, new room, new nurses, new patients… No, not new… The people are new but they have so much in common with the Fellowship I experienced 21 years ago. The same stories. The same love of family, of faith, of purpose. The same desire to live. Here there is no talk of politics, of current events – the time and space that exists between us is filled with hope, pain, dreams, fear and purpose. Some days there is a hush in the room and we all agree to keep the silence. Some days we talk, we laugh, we make eye contact and have a camaraderie that comes with shared experiences. My Rock drives me to each visit and then hangs out in the waiting room while I receive my treatment. Familiar? Yes. Different? Also, yes. Necessary? Without a doubt.

The past 21 years have been filled with much physical pain… and yet, so much love. Much uncertainty, yet so much hope. Much sadness, yet so much joy. My Core Four is truly my reason for everything! I love them individually and as my family unit. They are the best parts of me!

My life is filled with humans I love and a job that that brings me joy. Most nights I’m in bed by 7 pm, working, writing, or watching movies. Might not seem like much from the outside looking in, but it’s a life filled with miracles and love. It’s extraordinary. ❤️