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. ❤️

Just… No More

This time last year I had the privilege of helping with Into the Woods at Greenville Theatre. This day last year was World Cancer Day. Light with darkness sprinkled with hope. That’s the tag line of my life.

Sondheim wrote complex themes and lyrics. The genius is that you hear and feel them where you are in life. It resonated quite differently with me last year. The song, No More, has become an anthem. If you haven’t listened to the song I highly recommend it. It takes place in Into the Woods when everyone is reeling from current events… They are, ironically, in the woods and are surrounded by giants, witches, loss of loved ones… The grief was overwhelming and hope was invisible…

Here are my thoughts… then and now, through the words written by Sondheim.

Baker	Me
No more questions,	What’s wrong? How do you feel? What’s your pain level?
Please.	It’s hard to answer these honestly
No more tests.	Testing fatigue
Comes the day you say, “What for?”
Please- no more.	Please… no more.

Baker’s Father
They disappoint,
They disappear,
They die but they don’t…

Baker
What?	That makes no sense, like most of life these days…

Baker’s Father
They disappoint	I disappoint those I love
In turn, I fear.	and my life is a burden
Forgive, though, they won’t…	they shouldn’t forgive that burden

Baker
No more riddles.	stop
No more jests.	trying
No more curses you can’t undo,	to
Left by fathers you never knew.	find out
No more quests.	what’s wrong

No more feelings.	I’ve turned my feelings off
Time to shut the door.	It’s easier to be alone
Just- no more.	Just.. no more

Baker’s Father
Running away- let’s do it,	Validating the idea of escaping into myself
Free from the ties that bind.	or literally running away
No more despair	Escaping will bring peace
Or burdens to bear
Out there in the yonder.

Running away- go to it.	Go ahead… shut down
Where did you have in mind?
Have to take care:	But, where to go?
Unless there’s a “where,”
You’ll only be wandering blind.
Just more questions.	I can’t escape my pain or worries
Different kind.	There will always be questions.

Where are we to go?	Is there a place to go?
Where are we ever to go?	Is there a time I should go?

Running away- we’ll do it.	Pulling into myself sounds right
Why sit around, resugned?
Trouble is, son,
The farther you run,	The solution never comes from running
The more you feel undefined
For what you’ve left undone
And, more, what you’ve left behind.	Shutting down will cause heartache to my Core 4 groups.

We disappoint,	Guilt
We leave a mess,	Guilt
We die but we don’t…	No one is alone… not even me

Baker
We disappoint	Truth
In turn, I guess.	and
Forget, though, we won’t…	time to chose what to do now…

BOTH
Like father, like son.	Can I become a better version of myself?

Baker
No more giants	I’ve feared the unknown
Waging war.	…the uninvited guest
Can’t we just pursue our lives	Can’t I just be happy
With out children and our wives?	with my Rock and Children?!!
Till that happier day arrives,	…when I’m whole
How do you ignore	How do I ignore
All the witches,	all the appointments,
All the curses,	all the hurtful things people say,
All the wolves, all the lies,	all the guilt for being a “miracle”,
The false hopes, the goodbyes,	promising doctor apointments, all of my friends who have died,
The reverses,	the wishing,
All the wondering what even worse is	but fearing something far worse is coming.
Still in store?

All the children…	Oh, my children and husband
All the giants…	Oh, the battles that are still happening…

No more.	The final “no more” is the thought that the Baker, our main character, will take no more of the destruction and his choice to return to the world that he doesn’t approve of… a world that has cost him dearly, to reconnect to those true friends/family and meet the challenges together. THIS is the lesson of Into the Woods. THIS is what I aspire to, but don’t always achieve. I’m grateful for those who stay with me in the trenches, who chose to love through the days I’m silent, who will laugh with me, cry with me and just be normal with me.

World Cancer Day: honoring the fighters, supporting the survivors, remembering the lost.

Living is complex for each of us. We carry hopes and dreams, disappointments and sorrow. We love, we laugh, we cry, we scream, and that’s how it should be. Do I wish the world was a better place? Yes, I do. Do I wish that sickness and pain were a thing of the past? Yes, I do.

Do I chose to pull into myself at times and escape? Yes, I do. Do I choose to step back into life, with all of the hurt? Yes, I do. I do because the causes are worth fighting. I do because my Rock and my children are my everything. I do because I love my little life. There may not be a solution for every problem, but there is always hope.

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.

The Case of the Chronic Incurable Friendship

Since starting this blog I have had a few people ask me what it felt like to hear the words, “You have cancer.” It’s hard for me to describe, so let me share with you a quote from David Fajenbaum that perfectly describes that moment for me. He writes, “I knew the language the doctors use, the careful truth-telling, the hedging, the open endedness. I’ve spoken that language before. Now that it was directed at me, it didn’t feel nearly as careful or open ended as I’d once assumed. Instead, the words felt like they were casting me out of the room, out of the hospital entirely. I’d been consigned to the plane of possibility. Anything was possible because no one knew. I was on my own.” – Hope Wears Sneakers

I still live on that plane of possibility.

Honestly, I’ve just begun to realize that my life is a chronic condition. By that I mean that up until recently I was still in crisis mode. 15 years. It’s been exhausting. Whether it was never hearing the word “cured” or not being able to ring the bell at the end of treatments, the constant testing or if it’s part of the drug trial – whatever the reason it’s been quite the realization process. So, now that I’m aware of this chronic condition, what do I do? Wouldn’t it be great if there was such a thing as a chronic incurable friendship to go along with my chronic incurable life? People who would stick around no matter what – that they understand that each scan, new detailed lab work, every specialist appointment feels like (and is) life or death? People who would understand my dark humor and my need to spend time alone, and yet they stay.

Guess what?

I already have a few of those!

BONUS: they already knew that I am chronic with a hint of crisis. (I wonder if that should be my personality type? Hmmmmm….)

These people have helped create a new and special type of magic that combats the pain, both physical and mental, of living with chronic health conditions. You’ve already been introduced to my Core Four. Let me introduce you to one of my chronic friends, Amy W.

Amy and I met in Colorado and became instant friends – the type of friend that makes you feel like you’ve known them forever. Her classroom was right across the hall from my office and we shared just about everything that was going on in our lives. Amy and I have so much in common: we are both stubborn, hate to be a burden to anyone, self-sufficient, creative and full of compassion for the underdog. We both love all things theater, especially the artistic choices in set design, staging and character development. We could see a play together 100 times before we would run out of things to talk about or discover.

Amy is the first chronic friend that joined my crazy life who was not a part of my life while I was battling cancer. We met during the “post-cancer but my body continues to fall apart” phase of life. She understood me. She stayed.

I cannot tell you how healing that is to my soul.

Amy understood from day one that my life meme is the one that says, “I hate to cancel. I know we made plans to get together tonight, but that was two hours ago. I was younger then and full of hope.” Trust me, I did a lot of cancelling on her. Yet she still stayed.

Since those early days in Colorado, Amy and I have gone through a lot of heartache together. We both lost our jobs when the school downsized. We have both lost a parent to cancer. We both moved away from our beloved state, and we did not move to the same state. Yet, she still stayed and even comes to visit me. She doesn’t stress or become fearful when she doesn’t hear from me, because she still “gets it” – we don’t need to be together to be friends, because ours is a chronic incurable friendship. No matter how long we are apart, or go without texting or calling (well, calling doesn’t usually work because she also knows how much I hate to talk on the phone), we can pick right back up and carry on as though no time has passed.

We also share another thing in common, and how I wish it were not so. My Amy W has cancer. Those parts of me that she understood, she now understands what caused them because she’s experiencing them now. The fear, the hope, the planning (oh, there is so much planning involved when you receive a cancer diagnosis), the life-focus adjustments, the being strong for those around you when you don’t feel strong, the inner strength that comes roaring out when it is needed, navigating tests and procedures during a pandemic while the world is in chaos… so many things I wish we didn’t share.

The joy and comfort of having friends that are chronic and incurable are that no matter what – no matter what, they won’t leave. No difference of opinion, no level of heartache, no misunderstanding ever changes the friendship. It’s solid. It’s messy. It’s Lucy and Ethel laugh out loud funny. It’s comforting each other when there are no words. It’s speaking truth in love. It’s no matter what – no matter what, they don’t leave.

It’s an investment.

Oh, how I wish we each could move towards this type of friendship with those around us. Not every friendship is the same, but our approach in how we see each other could be the same. To see the person, not the affiliation.. the person, not the social status.. the person, not the social media post.. the person, not the snapshot of one moment in their life.

So many hours of my week are spent dealing with the chronic and incurable effects from my cancer treatment. It’s hard. It’s scary. It’s frustrating. However, the actual living of my life is pretty wonderful. What makes the difference? The human connection. The raw, real, honest and uncancellable frienships.

I guess I could say that the pain and heartache brought on by the chronic incurable conditions of my life are exceeded by the joy, hope and love brought on by the chronic incurable friendships in my life. I lead a blessed life and am so very grateful.

Quattletine, Blog #8, Thank Goodness!

For many of us, another “new normal” begins today. Here in South Carolina, salons can reopen, restaurants can begin limited indoor seating, and some businesses are starting the process of resuming operations with a well thought-out plan. I’ve lived many a “new normal” in my lifetime. Through the years I’ve been asked some wonderful questions and one of my favorites is this: does change ever become routine?

Interesting question. A valid question.

My answer has always been that I just go with the flow, or something to that effect. Truth be told, every new normal chips away at the strong walls I started building around myself in 2004. These walls were built with the best of intentions, and, frankly speaking, their construction began before I was fully aware of them. This is one of the many reasons that I connect so strongly with Wicked – and my favorite song, Thank Goodness. Glinda beautifully sings this celebratory anthem and perfectly hints at the cost of past and current choices with the phrase, “there are bridges you cross you didn’t know you crossed until you cross.”

The walls and bridges that I have built in my own life… well, they seem a bit worn and in some disrepair these days. That’s a good thing, I think. It’s a vulnerable state that I never could have imagined. I desperately wanted to be “a good and faithful” cancer patient, and I still find myself auditioning for that part whenever I meet a new doctor, specialist or physical therapist. I need to change this habit. Change: deciding to build a different bridge. This part of me will always be under construction.

God created me to be a generally upbeat person. I love a cheerful response, a quick joke (a sarcastic one, if I’m going to be transparent), a positive outlook… But, sometimes these traits feel like a proverbial prison.

I’ve always thought of myself as an Elphaba, but I’m discovering that I’m a Glinda.

It’s a struggle to ask the difficult questions in a perky and optimistic manner. There never seemed to be the right place or time to say things like, “I don’t want to die” or “I want to see my children grow up.” The few times I gathered enough courage to say them I was met with, “don’t think like that” or “you need to stay positive” or “I KNOW you’ll make it.” Oh how we love living in a Pinterest world full of sayings that can heal all hurt, comfort all sorrow and turn a frown upside down. My personal favorite is “every time God closes a door He opens a window” – I certainly need more upper body strength for that type of life. 😂

So, how does one walk on the sunny side of life when one can’t even walk? How do we navigate the new normals of today? We do it together.

COVID-19 has brought up many long-buried thoughts and feelings, and I doubt I’m alone in this. We all have moments in our past that have influenced our thoughts, feelings and direction. As we find ourselves in another new normal I hope to walk alongside my fellow humans as we navigate each step. We may come from different paths and have learned different things, but I think we all will find that we have far more in common than we thought if we just listen, give space to be understood, and work together to create this new normal – the inevitable routine of change.