Revisiting the Fellowship of the Afflicted

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

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. ❤️

I’m Fine…

Well, truth be told, I’m not fine.

I have a love/hate relationship with the word “fine.” Most times it feels like an automatic response to the question, “How are you?” Is it a normal response to say, “I’m fine. How are you?” Yes, it is normal. Do I always trust the response? No.

Cheerfulness has been my motto. I’m surrounded by an amazing group of humans: family, friends and co-workers. I’ve lived to watch my children grow up. I’m married to my Rock/love of a lifetime. I’m sitting here in a lovely home, decorated for Christmas, listening to Christmas music while my little group of rescue dogs chew on their toys in contentment. Tonight I’ll make chili and cornbread, because that’s what the blustery weather seems to dictate. Life is good. It’s more than good, it’s pretty freaking fantastic.

Yet…

If I were to honestly answer the question, “How are you?” I would say something like, “I’m really hurting and living with more physical pain than ever before and I’m struggling.” The reasons for the pain, in most part, comes from being part of a drug trial and fighting my own battle with cancer. Would I do it again? Absolutely. No question.

Sixteen years ago, when I was diagnosed with cancer, I kept an incredibly upbeat disposition. I assured and reassured family and friends that I would be fine… that I would beat cancer. I assured my children that if I did die that I would still be with them, in their hearts, even if they couldn’t see me. My oncologist, nurses, specialists and spiritual staff at the hospital all commented on my happy disposition – that it lifted their spirits. One such day, my blood counts were so low that even slightly raising my head off of the pillow would cause a whopper of a nose blood, something that could literally kill me. So, I laid flat, all day, while receiving chemo and blood transfusions. I can barely think of that day without crying… it was difficult. Painful. Scary. On the outside, though, all you would have seen was cheerfulness. The closest I can come to describing the emotions I was feeling in those moments is “terrifyingly confused with a hint of gratefulness.”

My greatest fear was being a burden… it still is.

When I was finally allowed to go home and begin isolation there, I did try and talk with a friend or two about my fears, but I was quickly reminded that everything would be fine… Keep a positive spirit… Only think positive thoughts… They knew I would be fine… Those comments all came from a place of love, I know that. I’m grateful for good friends. However, in my 16 years as a cancer survivor and fighter, I truly believe that we need to give people a place to be “uncheerful” ‘for awhile. Perpetual cheerfulness has, at times, become a prison for me and there are times when I desperately want to break free.

Much of my life and experiences are only truly known by a small handful of people, and that has been my choice. Frankly, most of my life these past 16 years can only be understood by those who have literally walked with me through each trial. My Rock and My Core Four have seen every single trial, and that makes me feel abundantly sad with a heaping dose of love and gratitude.

Some things can’t be told. You either live them or you don’t. But they can’t be told.

However, the lessons we learn, those things can be told. I’ve been on an exploration of who I am and how I can best live this life I have been miraculously given. It’s an ongoing journey. Some people are doers. Some people are takers. Some people are drifters. There’s lots of ways to break down personality traits, but what I’ve learned is that I’m a prover.

My proverbial need to NOT be a burden to anyone feeds my need to be a prover. I do not want anyone to feel like they have to place their lives on hold, give up any dream, or simply not run an errand because I may need them for something. This is what caused my overwhelming cheerfulness in times of absolute distress. I look back at my time in treatment, isolation, and re-navigating life and see a sick, scared and hurting human who couldn’t bare the thought of causing any more sadness to those around her.

BUT…

That doesn’t mean that my cheerful disposition wasn’t authentic the majority of the time. I have been blessed to have a personality that looks for the good, believes life will improve, loves to laugh with abandon, to cook and clean and work… 90% of the time I am truly happy, regardless of circumstance. There is so much about my life that I love! I’m grateful. I’m blessed. I’m a goofball.

I’m not fine. Every single day the amount of physical pain I feel is overwhelming. I’m also happy. I’m loved and I love those around me.

Life is so much more about “and” than “or.”

It’s okay to be happy with a twinge of sadness. It’s okay to be laughing out loud with a hint of uncertainty. It’s okay to be brave and scared at the same time. It’s okay to be disappointed with a whisper of hope. It’s okay to not be cheerful 24/7. We need to laugh, cry, dance, roll our eyes (my personal favorite) sing, scream, be quiet, be goofy, feel angry, feel hurt, feel love and to be loved. It’s all okay.

Emotions are signposts of where we are in the moment, but they are NOT directives on who we are.

So, now that you know one of my deepest secrets, let me introduce myself…

Hi, I’m Aimée. I’m a wife, mother, daughter, sister, friend, cancer survivor, prover and dog lover who loves to laugh (a lot), text (NOT talk on the phone) with my family and friends, cook, discuss the real meaning of life, give where I can, watch scary movies (zombie movies are my favorite) and eat dinner every single night with my Core 4. I’m a work in progress who is grateful for every moment and am discovering that it’s okay to keep discovering. We humans, we grow and change. No one is who they were 10 years ago, or even yesterday.

Signposts. Not directives.

It’s a Wonderful Life, Part 1

Synopsis: George Bailey has spent his entire life giving up his big dreams for the good of his town, Bedford Falls. But, on Christmas Eve, he is broken and suicidal over the misplacing of $8000 and the machinations of the evil millionaire Mr. Potter. His guardian angel, Clarence, falls to Earth, literally, and shows him how his town, family, and friends would have turned out if he had never been born.

The whomping willow has been out in full force the past few months. Pain, both physical and emotional, have been felt daily – hourly, if I’m honest. The physical pain I can deal with. The emotional pain, well, that’s a bit tougher for me. I’ve experienced a hightened sense of loss of “what was” in my life.

Ironically, I’ve never been a “what if” person, as I truly believe that is a dangerous mindset. The “what if bus” never leads to a good place! If you would ask my Core 4 and closest friends they would tell you that one of my favorite phrases is, “It is what it is.” Survive and thrive, that’s the way to live. Mind over matter. Pick myself up by the bootstraps and soldier on.

Right?

I find that life is full of platitudes. The real, raw life is a bit harder to explain to those around me. I have a reputation, after all, and I have fallen prey to the whole duplicity of advocating a transparent life while desparately trying to maintain the illusion of strength.

Enter It’s a Wonderful Life by Frank Capra. Have you seen it? It’s a staple around the Holidays. I’ve seen the movie countless times and have cried, laughed and celebrated alongside George Bailey as the loveable Clarence tries his best to earn his wings and show George what is truly important in life. What’s more heartwarming than that? Great story. Great message full of hope. An easy 2 hour respite before forging back into the real world.

Wait.

Now enter Greenville Little Theatre and the director of their production of It’s a Wonderful Life. Suzanne gave me the honor of assisting with this production. My theatre teacher’s heart almost burst with happiness! My favorite part of theatre is watching the actors and production team learn to trust one other and then witnessing the beautiful one-of-a-kind story that emerges. There’s nothing like it!

So, I get my script and head into rehearsals. I’ve no lines to memorize or costumes to prepare. I have the best job – simply helping with the script as needed. Piece of cake. As I sat in rehearsal, night after night, listening to the words of the actors and the direction of Suzanne, something truly miraculous happened. My heart began to feel and heal.

Night after night I witnessed the struggles of George Bailey and the path he went on that led him to believe he was worth more dead than alive. He had a loving wife, wonderful children, and a town full of people who loved and respected him. But at the root of all of it was a man who had to give up all of his dreams. The life he envisioned never happened. He was the champion of everyone but himself.

Enter Craig and Latteshia – our very own George and Clariece. These two are Theatre gold. Magic. And, in my case, guardian angels. They bring these characters to life in a brilliant blend of the old-fashioned and contemporary. That’s a rare thing! (For the record, these two are extraordinary humans, off stage as well as on. My life is better for knowing them!) So before I ramble on let me use their words, the words of Frank Capra, to tell you just how much they have helped my heart and soul begin to breathe and heal…

G: …and what did I get for it? A bad cold and a bum ear for the rest of my life. I still can’t hear out of this ear C: That ear hasn’t prevented you from living a good life… helping others.

G: We can get through this thing all right. But we’ve got to stick together. We have to have faith in each other.

C: Are you happy? G: Yes. C: Are you still thinking about what you were thinking about 45 minutes ago? G: Yes.

C: No one is worth more dead than alive, George.

C: You’ve been given a great gift, George.

C: What was. Was. What is. Is. Strange, isn’t it? Each man’s life touches so many other lives, and when he isn’t around he leaves an awful hole, doesn’t he?

C: It’s a shame, really. You had the greatest gift of all conferred on you – the gift of life – of being part of this world and taking part in it.

So much more I could say here, but will leave that for my next post.

Tonight is opening night for this production of It’s a Wonderful Life. It will be remarkable because this cast, crew and production team are remarkable. My heart is full and so very thankful!

It truly is a Wonderful Life!