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!

Cheating Death, Part 1

Script Synopsis: “The Angel of Death visits a mental hospital to collect someone on his list, he accidentally reveals himself to the wrong person. After struggling to convince the patients of his identity, Death attempts to correct his potentially fatal mistake and demands to know which one of them is actually the one he came for. But the patients refuse to give up their friend’s true identity, even after Death insists that if he doesn’t perform the touch of death within the allotted time, the consequences could be disastrous. Death must resort to drastic measures and even joins the group sessions in order to win this deadly battle of wits.” – Cheating Death by Kamron Klitgaard

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We measure life by time. How our minutes, hours, days, weeks, months and years are divided or categorized. Me, I love the clock. Lived by it. My belief is that being on time really means to be early. Being late to anything was one of the deadly sins in my book.

I loved sayings like “It’s been a great week!” Positivity always ruled. I am ashamed to say that I didn’t understand how people would let a bad day turn their entire outlook bad. I mean, come on, just pull yourself together and get over it.

Then life happened. To me. And I truly learned that the simple structures I had holding up the walls of my life were damaged by the weight of it all.

Confused? I sure was. I still am.

People have spent years studying how long it takes to establish a habit and how long it takes to break one. Then there’s the research on how long it takes to develop a new habit over an old one. I loved these statistics. And, while I do not discredit these findings, I have learned that for me, personally, there was a new statistic I had to deal with: How long does one event effect the rest of my life? Seriously, how long!?!

I truly believed that at some point of my life, should I survive, that it would all go back to normal – or as close to normal as possible. It’s been 14 years and I’m still waiting.

Here’s why.

It took one week from the time I knew something was wrong until I met with an oncologist. It took 2 days of testing to find an initial diagnosis. I was given 3 days to get my affairs in order and say goodbye to those I loved. It took weeks and weeks of in-house (ground breaking and heavy duty) chemo on the “DNR” floor. It took 24 hours to get my weekly (yes, weekly) bone marrow biopsy results. It took one meeting with “The Angel of Death”…..

Yes, I met her.

She’s real.

After a particularly bad few days in the hospital, and after one of the first times they called my Rock to get our kiddos and come see me for what would most likely be the last time, I was introduced to her. I was alone in my room and a sweet looking lady walked in and said, “Hey, Aimee’, I’m the Angel of Death.”

Ummmmm. What?!!!!!!

She proceeded to explain that her job was to ensure that I was in no pain for the remainder of my time. She then started explaining different options but all I heard was “blah, blah, blah.” Actually I heard what sounded like Charlie Brown’s teacher, but I don’t know how to type that… She came to see me at least 3 times every day. It was hard to get away from her. 😂 (The DNR floor coupled with my current health crisis didn’t allow for much running around, but I did try. I digress, those are stories for another day.)

My measure of time was amped up! Seconds felt like years. I swear at times I could see, smell and feel time. So, how long would it take for me to get back to my normal life? I have survived, haven’t I? So, what’s taking so long?!!!

Here is what I’ve been learning (learning, not learned): time isn’t easily measured. I lived 36 years before cancer and 14 years since diagnosis. But the time in between – the “blip” on my life’s radar – forever altered every part of my life. For me there has never been a clear “before cancer and “after cancer.” The blip was ongoing.

I’m truly grappling to understand. Let me try to explain.

We’ve all seen videos of patients who get to celebrate their last chemo. I LOVE those videos! They truly fill my heart with so much hope. Powerful! When I was in treatment my oncology group used bubbles. Those fun, summer, wand-in-container bubbles that we all grew up with. During my months and months in the chair receiving chemo I would watch, tear up and applaud those who were able to celebrate with bubbles. They were done. They had completed something. I was truly excited for them. Hopeful. Their journey certainly wasn’t over, but those bubbles signified an end to something – to the current treatment. That’s a big deal! It should be celebrated.

However, in my situation, there were no bubbles. No quantifiable “end” of treatment. The research that was being conducted was ongoing. I would leave each Friday not knowing how long the treatments would continue. I still had bone marrow biopsies for testing, blood samples to be sent off for research, recovery time from cardiac arrests from treatment, etc. I can still hear the oncology nurses arguing with my medical team about the psychological importance of those bubbles. Their answer was that it would be worse, psychologically, if we celebrated and then I had to keep going.

Enough to drive one crazy? (There’s a reason I chose this stage play 😇.)

In the midst of my treatments/research I never felt overwhelmed by it all. It was my new normal, cemented in place by the weight of it all. I don’t remember how I felt when I learned that the other patients in my research group had all passed away, but I do remember others saying how fantastic it was that I was still here and going. I had cheated death.

But my reality was this:

• I had several brushes with Death and was assured there would be more to come

• I had met The Angel of Death

• Death seemed to be trying to find me but a strange dramedy was playing out all around me

• I was always in a holding pattern

• I was surviving.

I’m still surviving. What I’m just now realizing is that the 36 years before cancer and the 14 years since diagnosis pale in comparison to the “blip.” That time, from first realizing there was a problem until maintenance treatment stopped, was THE time that reprogrammed my thinking. My new normal was that of a constant holding pattern. There was/is always another test, another result, another opinion, updated research, new specialist visits, and the list goes on.

No more psychological holding patterns. Yes, my days are numbered. Everyone’s are. It’s time to get out of this holding pattern and live, warts and all. I’m not going to get back the life I had before or even close to it. That’s ok. I’m not that person anymore. It’s time to brush myself off and choose what’s truly important, put my energies there, and live without a holding pattern.

I’m ready.

Notes: Survivorship

Hello. It’s me.

It’s been awhile. Too long.

Writing has always been a tremendous outlet for me. Writing has been the best way for me to work through my thoughts and feelings. Writing gives me perspective. I truly appreciate those who take the time to read things I’ve written. This blog, for instance. It’s not always easy to read. I’m trying to “keep it real” and bring you with me through this crazy life of mine.

Keeping it real, in regards to this blog, is difficult at times. The memories are still raw. They’ve been buried deep for a long time. I knew going into this that it would be difficult, but I had no idea just how difficult it would be. There are 10 drafts of upcoming blogs… the stage plays are picked out and put with specific parts of my life. Most of these drafts were started 3 months ago. These drafts haunt me at times. The emotions, memories and things learned swirl in my head, but they are just random words. I cannot seem to corral them into cohesive sentences. I’ve been lost. I’ve lost a little hope.

The past 18 months I have spent being tossed from specialist to specialist. The toll from my drug trial continues to take much from me physically. These past 18 months I have been diagnosed with several diseases, and so far most of the initial diagnoses have been retracted. Each specialist looks at my history and get so hung up on the amount of arsenic I took, along with the other chemotherapies, and go directly to the worse case scenario. Here’s a hint of things I’ve been diagnosed with (remember none of these are correct but the emotional toll for me and my Core Four has been great): dementia/early onset Alzheimer’s, permanent vertigo, Crohne’s Disease, kidney failure, seizure disorder … We are now working through a possible diagnosis of MS. My favorite recent test was a 3 hour MRI. That was a hoot! 😶😋 One doctor ordered a blood test to check current levels of arsenic. The phlebotomist looked at the order and very sweetly asked if I was ok. She looked so sad. ”Twas a bit awkward until I figured out she thought they suspected my husband was trying to kill me. 🤔😬😂 I assured her that wasn’t the case and gave her some of my chemo background. She was so relieved she almost cried.

Survivorship is a funny thing. Truly. My life must look so weird to people. I forget that most people don’t joke about arsenic. 😎 Survivorship changes, morphs, and is different for each of us.

I’m not writing any of this to cause concern. I’m still the quiet and meek chick you’ve known. 😇🤥 OK, I’m still the spitfire that you’ve known. Going with the flow and constantly saying “It is what it is.” Yup. That hasn’t changed.

The change came in a quiet manner. It snuck up on me like The Unexpected Guest (see a previous blog post on him). My hope was slowly fading. I’ve spent over a decade trying to get better, to feel healthy. Wow, that’s a long time.

Then something pretty miraculous happened. My hope returned. It felt like watching Kristen Chenoweth sing, “Thank Goodness” during a performance of Wicked. That song speaks to me. Great lessons in that song. Powerful. Life changing.

What happened? I met a fellow survivor of APL via the Leukemia and Lymphoma Society’s Instagram. A tangible connection of someone who not only survived this wretched disease, but is thriving. The world of APL has evolved so much the past 10 – 15 years. APL used to be a certain death sentence but now it has a cure rate around 90%. That’s beyond exciting! Research. Drug trials. They are important to our fight against cancer. When I started the drug trial in 2004 my oncologist said, “It may be too late for you but what we learn through this drug trial may save the lives of people who come after you.” That “who come after you” is no longer a concept, it’s tangible. Oh, how it has been a balm to my soul!

This young man is Dustin Reidesel. He and his wife are pretty fantastic. You’ll want to read his blog. He also hosts a podcast, Cheeto Dust, which I’ve listened to. Dustin is an excellent voice for Millennials. As a mother to two practically perfect Millennials I can honestly say that listening to Cheeto Dust has given me a fresh perspective. It’s been a gift!

Dustin and KT Reidesel

Survivorship was something I felt I had to do alone. That’s changed. It’s a vulnerable place to realize that. It means sharing more of myself. Not easy for me.

So what have I learned? No one is alone. We don’t meet people by chance. Those who we meet, even if for a moment, are there for a reason. I need to be quiet and listen. Really listen. I need to let people in. That’s scary. Terrifying.

And I couldn’t be happier…

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You can find Dustin at:

dustinriedesel.com

Cheeto Dust Podcast on SoundCloud and Apple

Notes: Driving Miss Daisy

Driving. It signifies so much. Independence. Freedom. Travel. Exploring. Adventuring. I love driving and finding new routes to a destination. I love back roads. Driving allows me to think and relax.

The past several months I have been unable to drive. I have become Miss Daisy. Thankfully I have several chauffeurs: my rock, my daughter, friends and co-workers. My main chauffeur has been my son, Matthew. He drove me to work before his work day started. He used his lunch time to pick me up from work and take me home (I only work in the morning) and then return to his job. Matthew works about 50 hours a week and then heads to the theatre for rehearsal or a performance. His day would end around 10:30 – 11:00 pm.

Being the passenger has given me a new perspective on many things. The drivers in South Carolina are… crazy. It’s like a roller derby with cars, and we can’t forget the significant presence of mopeds on the street. 😳 I applaud everyone who gets safely from point A to point B!

I’ve gained appreciation for independence.

I’ve gained appreciation for those who have taken their time to schlep me to doctor appointments, tests, the theatre and home.

Time.

There’s that word again. Time.

Time truly is a most precious gift. For those who have given me so much, thank you!

For my rock and daughter, Victoria, your honest willingness to go out of your way to help has been such a blessing. ❤️

To my main chauffeur, Matthew, what can I say? You have given so much time when you’ve had very little to yourself. You’ve never complained. You happily help out no matter what is going on in your life. Thank you! ❤️

I’ve learned a lot in the passenger seat. I’ve learned more about those in the driver’s seat. We talk about lots of nothings that amount to quite a bit of something.

Time. The little things about our day. These add up to knowing more about each other. I hope to always remember to pay attention to those around me and learn about the little things in life. For, it seems, that the little things can teach us so many things.

Brigadoon

Brigadoon was one of the first live theatre performances that I watched. It transported me to the Scottish Highlands with the perfect blend of reality and fantasy, love and betrayal, adventure and suspense. The story has stayed with me. The music represents so much more than just lyrics… THIS is one of the many reasons I love theatre. Theatre is interpretive. It’s timeless. It resonates.

Let’s go on a journey into parts of my Brigadoon…

A hospital is not exactly the Scottish Highlands. No fancy sword fights or romantic music playing while I danced through the halls. I didn’t have the strength to walk down the hall. I was literally fighting for my life. It looked bleak. It felt bleak, to be honest. It felt like I was in the Highlands, surrounded by a fog so heavy that I couldn’t see anything around me. I heard voices. Lots of voices. Voices of doctors, nurses, social workers…. (Yes, I had a social worker assigned to me, as well as a Sister from the Catholic Church. When you’ve had to sign “do not resuscitate” papers in order to be admitted for a brand new treatment you get a plethora of people assigned to you. One morning I counted 20 people who had come in to see me before 10 am. I’ll save that story for another day…).

But, I clearly remember the day the fog started to lift….

My blood type is O negative, with an rH factor. This caused a few issues upon being admitted to the hospital, as I needed blood and platelets, STAT. O negative is the universal donor, but it is quite picky about receiving only O neg. Because of the rH factor the doctors wanted me to have single-donor platelets. They did not have any single-donor platelets. My church, friends and family put out the word: anyone willing to donate O neg would be fantastic. Urgent need.

Within a few days we had a list of over 15 people, many of whom I knew, who had signed up to donate. The first person on the list was my father. Throughout the first few days in the hospital, I received blood from strangers, some from far away.

Honestly, I do not know how this works in 2018. In 2004, where I was, once the blood and platelets started coming in from donations for me, the blood bank people would let me know. I didn’t know who exactly had donated the blood and/or platelets I was receiving, but I knew that it was someone who had signed up.

Strangers. Friends. Family. They all saved my life. Literally.

The day the fog started to lift was the day that first specifically-donated blood bag came in. It caused me to pause and think about what that bag meant. It meant hope. It meant others were giving of themselves, in the most personal way possible, to help me live… help me to have strength to fight.

That first bag also made me think about the first blood transfusion I received upon entering the hospital. I have no idea who that was from. None. That donation allowed me to live long enough to get my port put in so that I could fight this horrible disease.

Strangers. Friends. Family.

A community of life savers.

My community.

Thank you is so inadequate…

The day the fog started to lift.

Perspective is a beautiful thing, remembering what to focus on. In that moment I wasn’t alone, battling a terrible monster, trying to live. I was a girl in the Highlands who was being rescued by strangers, family and friends. This is what I feel when I watch Brigadoon now.

My story has everything that makes up great theatre: love, laughter, romance, adventure, mystery, suspense, betrayal, music; above all, it has hope.

“You’ll never find peace by hating, lad. It only shuts ye off more from the world. This place is only a cursed world if ye make it so. To the rest of us, ’tis a blessed place.”

DEH: Anybody Have a Map?

Last minute, unplanned road trips are fun… unless you want to know where you’re going and how you’ll get there.

GPS is a wonderful invention. As long as you know your destination, it tells you how many miles you need to travel, your current speed, places to stop along the way and your arrival time. It also shows you a map of your journey. Point A to Point B. Clear. Accurate. Reassuring.

I love my GPS. I’m a Wazer.

I also love driving the road less traveled, finding a new way each time I go somewhere. It’s fun. Adventurous. Relaxing. Plus, Waze is always there for me, ready and waiting should I find myself in need. Reassuring.

Life is supposed to be an adventure, right? Planned with enough spontaneity to keep it interesting.

That was me circa 2004.

That’s when I found out that “normal” questions might not have an answer. Questions like:

* what stage is your cancer? (Where are you going?)

* what’s your prognosis? (How long is your journey?)

* how are they going to treat that? (How will you get there?)

The list goes on… I used to ask those questions. They are logical. Inquiring minds want to know. Some minds need to know. The “why” and the “how” of situations. When I was on the receiving end of these questions I was, again, that cartoon character who just sat there with eyes 👀 blinking while sound effects enunciated the blinking. There wasn’t an answer yet…

ANYBODY HAVE A MAP?!?!?!?!!!!!!

A diagnosis of APL in today’s world is still quite scary. It has a standard protocol. It’s scary. It’s deadly. There is a map.

In 2004, where I was living, there was no map. No protocol. There was a drug trial at MD Anderson. Thankfully I became part of a small group in a specific trial. There was 30 of us and we would each follow a different treatment plan. We would work it out as we went along. No map. There was a destination and an alternate destination. Our preferred destination was survival. Our alternative destination was to gain information that would benefit those who would be diagnosed with APL in the future.

I preferred the first destination.

I was thankful that the alternative destination was on the route.

I was flying blind.

I was making it up as I go.

It was a scary truth.

It was worth it.