Infertile Myrtle
Things get a little complicated when you’re a young adult that has been through cancer treatment and are ready to grow your family. The questions and racing thoughts are bountiful, and fear rears its ferocious little head far more often than preferred. It’s been a weird, frightful, and somewhat cynical place for me over the last 4+ years. Once you realize that mortality is a real thing and you face some of the implications of what that means for your life, you start reevaluating, well, close to everything.
One of the first questions we asked Dr. Spencer in our radiation consultation appointment was whether or not anything that I had already undergone or would undergo with treatment would affect our ability to have children someday. At that point, our vision for our future was still relatively clear. We were married, knew we wanted a family someday, and we hoped that this surprise cancer situation would just be a blip on the radar. And it was. But at some point our vision blurred and fear bled into our thoughts.
“What if” basically became part of my identity during that first year post-treatment. We had been instructed to wait about a year after treatment before trying to grow our family (Growing a tumor apparently doesn’t count as family. And yes, I know my humor is a little off still) so knowing that the potential to have children was getting closer, many of our discussions centered around what that might look like.
As so many couples probably do, we started out pretty excited thinking every month was THE month that we would see those beloved two pink lines. We absolutely clung to hope in every way. Every weird feeling, every rainbow, and every prayer…it all brought immense joy and assurance that the Lord was working to fulfill His promises. And He was.
Yet 54 months later, and we are still waiting on that month and those lines. No false alarms. No miscarriages. No additional diagnoses. No babies. No sign of anything. Nothing.
At the 2ish year mark (June 2020) we decided to finally go to an infertility clinic. We underwent a full lab workups, various samples, questions, life history, tests, genetic tests, and a gazillion appointments. Yet at the end of it all, there is absolutely nothing identifiably wrong with either one of us. In fact, everything came back nearly perfect, clinically speaking.
There have been SO many days and moments over the last 5 years where I have pleaded for the Lord to answer the loud and resounding WHYYYs that have plagued me all too often. Haven’t we struggled enough already? Mom’s cancer, my cancer, the mental healing and emotional work that was necessary to do after the trauma that ensued, and now infertility?! There are many days and moments where I’m just mad and frustrated. Can’t something work in my body how it’s supposed to? How many things are going to leave me feeling broken and inadequate before there’s nothing left? Why did the Lord put being a mama on my heart if it wasn’t going to happen? If it is going to happen, why not wait until our blessing is closer to give us the desire? Why do I keep seeing visions of me holding my baby in this house and baby toys strewn across the floor? How many more people are going to tell us what wonderful parent’s we’ll be if we’re not meant to be parents at all. It’s all so disillusioning at times.
But glory. And purpose. There is always both. And it’s always good.
As I’ve also spent time in reflection over the last 5 years, the Lord’s hand and provision has been glaringly evident, which I know opposes what I described feeling above. It is, but both can and do exist simultaneously. Everywhere we look opportunity has been abundant. We have not once lacked something we needed, even when we felt like what we were given wasn’t what we thought we needed at the time. Support has been plentiful, yet so has abandonment, betrayal, and loneliness. Prayers have been offered up continually and encouragement has come from places we didn’t expect. And at times, well-meaning questions and comments were painful to respond to or hurt our feelings in reflection. But knowing and acknowledging that God’s hand is in our story doesn’t mean our feelings always reflect that acknowledgement or that situations haven’t totally sucked at times too.
In many moments, we’ve felt the depths of exhaustion and defeat. We’ve felt the frustration over how many things from cancer still affect my life from time to time, the survivor’s guilt when I am humbly reminded that my cancer journey was relatively easy compared to what some go through. Embarrassment from how the healing process hemorrhaged onto other aspects of life like friendships and relationships and how out of control that felt. Disillusionment about how life was “supposed to go” and simply…didn’t. And how many moments I spent wrapped up and paralyzed from fear, worry, and anxiety. Yet part of all that is why I’m finding myself here…on my cancer blog…almost 5 years out…talking about infertility.
Because the impact doesn’t end after surgery or after treatment. There is no separation between traumas and there is no box to package things up in, tie a bow on, and ship off to another planet (although that would be nice). We just have to choose to focus on that glory and that purpose that the suffering reveals over time. And most of all, find peace in that.
So, with each nagging question, I’m faced with a choice. Am I going to let the fear and experience circulate my thoughts and overwhelm me to the point of anxious inability to see beyond the past, or will I choose trust the perspective and faith in the God that has never once led me in the wrong direction?
1) What if it comes back?
I had cancer at 28. Generally speaking, cancer is a disease of age. If you live long enough, there is a decent chance you may be diagnosed with some sort of cancer. At an older age, you’ve lived most of your life so there is presumably less life to live or mourn the possible loss of. But yet at 28, you look at what you think is the rest of your life and realize that that very well may be cut short because you hit the cancer milestone wayyyy ahead of everyone else, and you have way more time for something to come back. This is one of the oddest realities I’ve processed yet and I’ve finally (just in in year 5) have realized that I am more at risk driving a car these days than I am for my previous cancer to take me out. Death can happen at any time, and fighting for control over that or being terrified of the outcomes of that is utterly unproductive.
2) What if I die “early” and leave my family here without me?
There are many moments that I have imagined my family surrounding my casket at my funeral and my kids having to figure out life without Mom. Or my husband crawling in bed at night…alone…knowing he will never hold me or talk to me again. Or the questions our little ones might ask in trying to understand death and disease that brings up the reality of things yet again for my husband who is also trying to understand. And it makes me absolutely sob, and it’s made me question many, many times if bringing a child into this world is worth the potential of all that.
These are incredibly morbid and hard thoughts. I know that, and I’m not attempting to cover that up. But this is what I mean (and have always meant) when I say that facing your mortality at a young age is rough. It’s really freaking hard and scary. But it’s also beautifully eye-opening to the value that humans and relationship have in life.
I want none of these things to come true. I want to snuggle my husband and my babies until I’m too old to know who or what I’m snuggling, but finding peace with the plan the Lord has for my life is the only option here. And that is also really freaking hard sometimes.
3) What if I haven’t gotten pregnant already because something else is coming for me?
My head and neck is monitored pretty closely. Since October of 2017, I have had scans at least every 6 months, if not every 3-4 months. Ain’t nothing in there getting past anyone!…But the rest of me could be totally up for debate. Thank God, for all the vaginal ultrasounds, saline ultrasounds, HSGs, and whatever else to confirm that my lady bits are also safe or I might still be thinking THAT’s why nothing is sticking! (please acknowledge my humor here too). For real though, after initially figuring out your body is capable of producing cancer cells, it’s really, really hard not to wonder when that process might unknowingly start taking place again like it did before, and what if it’s too late next time. (Thankfully, I had a PET scan at the end of June so peace has been restored here for a while)
All of these questions have led to really intimately exposing conversations between K.T. and me. We’ve cried together on many long drives where these things come up. We’ve shared perspective with one another, which thankfully tends to be drastically different than the other. We’ve discussed options and alternatives at uncomfortable depths in order to process thoughts and emotions in a “healthy” manner. And we’ve played out scenarios and what ifs to make decisions for our family. It’s an added layer to things that I would assume most couples trying to grow their families don’t experience, but here we are.
These conversations have cemented us together like nothing else. When you marry in the Christian faith, you become one flesh, and we’ve pretty much nailed that one. We’re one big ole pile of Powell flesh after all we’ve been through. Those conversations have led us to scripture and the promises of God almost every time. They have reminded us of hope and faithfulness we’ve seen thus far, and the purpose. My goodness, the purpose. They have stripped away insecurities and left us vulnerable and they’ve built back trust in a way that I didn’t expect.
At the beginning of this year, K.T. and I felt led to finally embark on the adventure of IVF. We had always felt like it wasn’t for us, but after 4.5 IUIs (Intrauterine insemination) in 2020-2021 and a decent break from infertility things, we felt the nudge to begin again.
January 11 was our first appointment with our clinic. Jan 26 we did our first set of lab work. February 9 was our first call with the genetic counsellor that would eventually be testing our embryos. We were pretty psyched. This timing put us on schedule for an end of May genetic probe completion, June egg retrieval, and an August/September transfer, which puts you at a status of PUPO or pregnant until proven otherwise.
Middle of May, K.T. came to me nervously and told me he had been thinking about our IVF plans. He felt like the Lord had laid it on his heart to dig deeper into things. I thought we were already pretty deep in things, but once we sat down and talked I quickly realized he meant something different. He wanted us to take a deeper dive into what scripture says about infertility. Now, we know that IVF isn’t in the bible (duh, hello 21st century technology) but the bible is actually pretty vocal about all things procreation.
K.T.’s a spreadsheet, practical, research person, and I’m, well, not, so he did his thing while I made a list of scriptures related to fertility to go hunt down and study. We looked for resources that might help us understand better and found ourselves buried in devotionals and sermons. We prayed for clarity and understanding and asked for the Lord to reveal answers that our hearts had been looking for and that He did.
Our first venture for the weekend was Secret Church. For most of the pandemic, we attended church online with David Platt at McClean Bible Church in DC. Secret Church is something David did when he was the Pastor here in Birmingham at Church at Brook Hills and the whole idea behind it is to study and pray like those in countries where the gospel isn’t allowed and Christians have to meet secretly for long hours to study the one bible they might have. K.T. made sure we had the materials we needed (like study guides and snacks) and scheduled 2hr sessions for us throughout the weekend (6 total hrs of teaching). Yes, it’s a lot and you better be paying attention or you’ll miss something valuable.
Also in the midst of all of this, K.T. was flipping through a men’s devotional he was given at Christmas and for whatever reason, hadn’t picked up in a while. He started was going day-by-day from January 1 looking for days that matched up with the list of scriptures I had made.
The first one that matched was January 11. The next one was February 9. The first IVF appointment and the first genetic counselling appointment. Not only did those match up with our initial appointments, but February 9th is the 40th day of the year, which also holds significance biblically.
Alright, Lord, we see you…loud and clear.
After a tough weekend, we knew. IVF wasn’t our journey anymore, and honestly I’m not sure it was ever supposed to be our journey looking back. So, we stopped. We called our doctors, cancelled our plans, and paid our bills we had stacked up. And we’ve (almost) never looked back.
A lot happened that weekend emotionally. Our decision wasn’t based on health. It didn’t come from fear or worry. It didn’t come from anyone else’s outside influence. It came from our faith in God and what we believe His Word says about life and the means of which life comes to be, specifically when labs and tests have shown no reason for us to be pursuing medical treatment. The reason for us starting IVF in the first place had very clearly become lack of patience and faith rather than treatment of a problem.
But it was more than that too. It was the possibility of having to grieve a life that we thought was ahead of us and one that we had begun to envision even more clearly…being parents. We had to understand that our decision could ultimately mean that we never have a child of our own. But it could also just mean that we could still have a child of our own naturally and it just wasn’t our time yet. Two drastically different outcomes to process and be ok with at the same time. Woof.
The weekend was heavy but nearly 4 months since that decision, the peace within us has sustained. We’ve talked many times about that weekend and everything that went into it and celebrated God’s goodness for it rather than wishing we had continued on.
While things have still been quite hard, as friends and family continue to get pregnant with free-sex babies (that’s what us infertility folks call those babies that happen without treatment 🙂 ) we’ve settled in to using our abundance of kid-free time for others in our lives. Have I thought about getting pregnant and whether this is the month or not? Have I wondered why? Have I watched the time ticking by and wondered if it will ever be our time? Have I bowed my head bummed out after seeing yet another pregnancy announcement? A million times over. Almost every single day. But I’m learning, and I’m growing slowly.
There’s purpose and there’s glory in it all. And that makes the wait worth it while we continue to pray for Baby Powell.
Someday. Maybe. Onward and upward.
Ned & Ted’s Big Adventure
I’ve always said I wanted twins. And my dreams have finally come true!….just not quite how I envisioned. In
June, I found out I have twin vocal chord nodules (which I named because duh) and they’re benign and harmless. For real this time.
Glanda fam, meet Ned and Ted. Those pokey little white bumps you see are my twins.
What some of you may or may not know is, I answer to “Coach Val in my spare time. I’ve coached the Samford University Dance Team for almost 5 years now and when auditions and Alabama’s pollen season hit at the same time this past April, my voice couldn’t hang. I totally lost my voice to the point where my husband had to announce the team at the end of the weekend because I was lucky to get a squeak out. Felt fine. Couldn’t talk.
After a week of sleep and hibernation my voice was still pretty squeaky and people were starting to ask “when is your voice coming back?” or my personal fav, “what’s wrong with your voice?”
“Oh, it’s just still gone from auditions. It’s getting better! Just not back to normal yet.”
Ok, so when we entered week 6 of no-voice-Val, my mother-in-law insisted I go get it checked. At this point I had maybe half of my voice back but some sounds and pitches still didn’t come out audibly. And looking back now, a history of head and neck cancer and no voice….probably should have sounded a few alarms, however I’m counting that particular blonde moment as a massive win because cancer and fear wasn’t my first thought.
The first week of June, I had an appointment with UAB Voice Center to get things checked out to see why my voice wasn’t returning fully. I was pretty nervous about the scope situation, as I have somehow escaped being scoped thus far, but I was assured several times that “it wasn’t that bad.” That’s a lie. It was that bad. I now have SO much respect for those H&N cancer warriors that get scoped at follow-up each time.
They first gave me the numbing spray up each nostril and had me wait several minutes for it to work. That gave me just enough time to observe everything in the room and imagine what everything was used for and where it might be going. Getting something sprayed up your nose wasn’t a great start. But unfortunately that wasnt where things being shoved up my nose stopped.
Next was a semi-taught cord with a light and a camera on the end and it was heading towards my face. I made sure to tell them that the left side (treatment side) of my nose bleeds pretty easily, so we thankfully avoided that mess, but straight up the right side it went.
“Just a little pressure here.” It approached my sinus cavity, and I would have believed you if you had told me a mack truck was navigating my nasal tissue rather than this small-ish scope. I got past that relatively quickly and I thought I was in the clear as far as the pain and nuisance goes. Hard part was over. Nope.
I swallowed. The scope hung just past my tonsils and became more evident with each adjustment. And if just sitting there wasn’t uncomfortable enough, now I had to make sounds!? We ran through the vowel sounds and up and down the pitch scales a few times mixed with a ton of swallowing (which was the worst part). My saliva is a little thicker down around the back of my throat which kept obscuring the clarity of what the scope needed to record, so swallowing was the only solution there. Poor girl holding the scope almost got punched a few times out of pure reflex, but I managed to maintain some restraint to not get kicked out of UAB’s voice center.
As I made each sound, I had to press a mic up against my throat to pick up the sound and resonance a little better. Seriously, so much multitasking but my main focus was getting that camera out of my throat ASAP because at this point tears were streaming down my face and it was getting embarrassing. I wasn’t crying. I just don’t think my body loved having the paparazzi hanging around my internal red carpet.
Finally it was over. I wiped the tears from my eyes and swallowed normally before reaching for my emotional support water cup as they introduced me officially to Ned and Ted. They’re actually so tiny, they hesitated to even call them nodules, but that’s what they went with and all I could think about was John Mayer. IYKYK.
I don’t care how big Ned and Ted were, this girl wasn’t about to consent to head and neck surgery again. Jk. I probably would have if it was necessary, but not for anything elective. So I’ve spent the better half of my summer doing voice therapy to practice using my throat muscles differently so that my vocal chords can heal.
As of last week, I’d say my voice is maybe at 90% but things have drastically improved from where I started late Spring. I’ll be scoped one more time before band camp starts on August 10, and while Ned and Ted won’t be totally gone yet (because your voice improved way before visual change is apparent), I’m hoping they have shrunk a noticeable amount! I may have always wanted twins, but these I’d like to send back! Half of my team this year has never heard my actual voice…but maybe soon!
Onward and upward!
More footage if you’re into that kind of thing:
Beneath the Treatment Mask: The Mess Mortality Makes of the Mind
In January of this year, I received an email from Sue Evans M.D., MPH. I didn’t recognize the name so I scrolled down to her email signature. I remember seeing Yale University and immediately exclaiming, “YALLEEE!?”! What?
I was for sure she had the wrong email address. But wait…she’s from Yale. People from Yale don’t make mistakes like that. I scrolled back up to make sure it was, in fact, addressed to me. It was. And her words were as follows:
“We are developing a panel for consideration for the ASTRO 2021 national meeting, in Chicago this fall. The topic is “Challenging Cases in Patient Safety”, and we are interested in having you serve as a former patient and current patient advocate on the panel. Your role would be to talk about how we might engage the patient in patient safety efforts. You would be alongside the delightful team cc’d here!”
More on this in a minute. Several weeks later, I received another email.
Subject: ASTRO 2021 Storytelling Session
“We are reaching out today to see if you would be interested in putting together a Storytelling session that is centered on highlighting the patient voice for the 2021 ASTRO Annual Meeting. This is a new format that allows ASTRO members and experts in the field to share their experiences through the art of storytelling.”
ASTRO wanted me to tell my story…to share…with everyone.
There was clearly much to do before ASTRO in Chicago in October. I had one pre-recorded video session to create from scratch somehow and one in-person panel session alongside some pretty stellar company to prepare for so I didn’t totally sound like a redneck from Alabama in front of a lot of very intelligent people. No pressure, but holy cow.
As you might imagine, much of the story surrounding this year’s ASTRO began well before we arrived in Chicago. It started early September as I sat on our front porch and scribbled down an outline for the video we would create of my story with cancer. Where do I even start? What’s the message? Who’s my audience and how will what I say (or don’t say) affect them? How do I structure everything so that anyone, especially busy radiation oncologists, would take the time to watch or care to watch? What is it about my story that makes it interesting? (My answer there was “nothing,” but I had already committed so I had to find something). I had a lot to think about before I put the first person in front of a camera.
I lined up all the interviews with those that I knew held pieces to the story that I couldn’t tell myself, and I prepared a list of questions for each interview to hopefully capture those pieces effectively. Everything seemed to be going seamlessly, and I was pumped for how it all might turn out. And then it was my turn. It was time to mentally walk through every single, tiny detail and moment of the most traumatic experience of my life that I had worked so hard to heal from. What on earth was I thinking when I said yes to that?
As I sat in the chair and faced the lens, chills ran down my spine. My neck got hot and slimy and the stabbing ache of immense fear flooded my body. I immediately jumped up and walked to the other room. Nope. Not happening. Not today.
This happened at least 3 times before I finally sat there and said something out loud, and even then, I sputtered around a while as K.T. tried to calm my nerves and ease me into some content. I had to focus on the outcome. I had to focus on the potential for someone to have better patient care through their cancer treatment because their physician heard what a patient feels and experiences on the mental and emotional side of things and be more sensitive to that. Finally, something meaningful came out.
The days of treatment and the initial year or two that followed are scary and embarrassing on so many levels and honestly days that I’ve worked hard to heal from and sort of forget. But there was something about hearing myself relive the fear and how I’ve processed various other crippling emotions that showed me how far I’ve come and how hard it really was. (I’ve never really admitted that. I’ve always just shrugged it off as something that happened and something we had no choice but to get through, but dang it was hard).
K.T. and I spent the following nights combing through over 6 hours of recorded content, learning how to use Premiere Pro, trimming possible phrases we wanted to keep, syncing audio, and piecing everything together in some sort of logically compelling manner. The Powells saw 3am more times in those two weeks than we have in nearly seven years of marriage and we literally almost killed each other due to exhaustion and drastically different ways of thinking. But we made it, and I have to say that I’m really, really proud of what we came up with. Now, to pray that it reaches the right people. (Click here to view)
Ok, Yale. Back to Yale.
Patient safety is one of those things that patients probably consider at some point in their treatment experience, however that consideration is likely passing and somewhat subconscious. But feeling safe under the care of our chosen physician is what establishes trust and what encourages us to keep pushing towards the finish line of treatment. We trust that what our doctors are doing is making a difference in our health.
When I first read through the panel ideas from Dr. Evans, I wondered how on earth I was going to provide any insight on patient safety. But as we all met and prepared for our session and went through case after case of missed or unorganized communication, I caught myself putting myself back in those patient shoes again and saying “but wait a minute, the patient probably heard that completely different. Of course, they’re panicking..” or “that’s probably a misunderstanding of what’s actually going on behind the scenes. They just need a bit more explanation.”
What we see as patients is how our care team communicates with one another, how information is transferred around from one sector of our care to another. We want to see that our care team is “boots on the ground”, trained, educated, and ready to fight every battle alongside us. We hear the information being communicated to us, and we hang on every word about our disease and treatment (because our life depends on it) , and we also have a unique ability to tell when something is off. And what is important to note is that all of these things affect our experience in some capacity. We know that communication errors WILL happen. But it’s how things are handled when those things happen that make a difference in how they’re perceived.
Thankfully the incredibly insightful Dr. Sue Evans and Dr. Sheri Weintraub had the foresight to expose some of these common communication hang-ups in the form of an ASTRO panel and enlisted a variety of voices to speak on how these hang-ups can be caught before they happen, diffused if they do, and how this might affect the patient overall.
We had 10 total cases to present from one of the following categories:
- Intradepartmental – between members of the same clinic (nurses, radiation oncologists, therapists, etc.)
- Interdepartmental – between members of clinics that work together (medical oncology, radiation oncology, surgery, etc.)
- Patient communication error – between the patient and members of their clinical care team
- Communication with disruptive patients – when patients become hard to deal with, threatening, or angry
We spent months reading through RO-ILS cases, discussing the implications of the safety errors in them, and choosing what would resonate with the largest amount of people. It was my job to step back into the shoes of a patient and think critically about how the situation or language used by my care team might have affected my trust, my experience, my doubts and fears, and my comfort level…and share that. And what an honor that was. These are the kinds of moments that remind me that going through radiation treatment at a young age with a sound mind has purpose. It has a voice, and it has opportunity.
It still takes me several reads and various other methods of verification to comprehend that my voice has a place on any kind of stage, much less one relating to radiation oncology patient care. But as long as people keep handing me the microphone, I will keep facing fears and retracing moments of grief for the sake of the future cancer patients….because it heals me too.
Every single moment of preparation and thought that went in to completing my duties at ASTRO ’21 was challenging. Things came at us out of nowhere that could have held us back and kept us home. I may be the only patient advocate that flew to a conference with my treatment side ear feeling almost just like it did at the end of treatment 4 years prior thanks to some very dry and stubborn caked on earwax covering my eardrum that ENT couldn’t get loose and a monster bug that stung my ear and swelled it up 3x its normal size. But dangit, I was getting on that plane. Thirteen hour travel day to Chicago? No big deal. We made it safely. I’ll save the rest of the drama, but you get the point.
The ASTRO conference and organization has been a steady stream of support and encouragement since my dear friend Jeff White found this article from 2018 and then my blog. To have been invited to an event of this size not once, but twice, still blows my mind. When I first attended in 2019, I was so incredibly intimidated and terrified to be in any of the presentation rooms by myself. No way I looked like a radiation oncologist. I felt so out of place, and just knew people were wondering what this little blonde girl from Alabama was doing here (and wearing heels…rookie). I almost immediately questioned why I had decided to launch myself into cancer world again like that. Why had I agreed to listen to presentation after presentation and clinical data about the exact treatment that defined the darkest and hardest days of my life. But the answer was I had a job to do. I had to give my patient perspective (which was pretty fresh at that point at just 2yrs post treatment) and I had promised to do it well.
As I landed in Chicago this year (this time with my hubs beside me) the same questions started to plague my mind. “What do you think you’re doing here? Why do you think your perspective matters over anyone else? Don’t you think that weird familiar discomfort your feeling in your ear could be another tumor? It’s probably been long enough for something to start growing back, right?”
But again. I had a job to do, and I wanted to do it well. I needed to do it well for the patients.
I don’t take these events lightly. They are pivotal moments in my journey, my healing, my identity, my confidence, and my humility. They bring be back to the sobering reality that I had cancer and there’s a lot of life left I want to live. They help me reflect back on my experience and see the progress in the field and find joy that things are improving for current and future patients. They remind me of the purpose my survival and current health has and the beauty of all the friends and radonc family that unfortunate circumstances have given me. And while so many emotions resurface, events like ASTRO give me hope while chipping off bit by bit of the fear and internal distress cancer has caused. There’s something freeing about telling people about the internal struggle that many hide very well, and them listening with a helpful heart. It makes it all feel a bit more normal when cancer feels anything but normal.
Huge thank you to all of those that have believed in me and trusted that what I have to say is relevant. You have given me courage. Thank you to those who have empowered me to speak and invited me to be a part of something far bigger than myself. You have given me strength to keep advocating when I feel like that road may be ending. Thank you to those who have listened with care and worked to understand the heart and not just the body of a patient. You give me the peace of feeling understood. And thank you to those who have loved and supported me through it all. You give
Please enjoy these scenic pics from our short outings in Chicago!
Behind the Treatment Mask: Bloopers
For every ameteur video project, there’s a whole set of bloopers that should follow. We ended up with over six hours of content to comb through and edit, so honestly it’s a little shocking that this blooper reel isn’t longer. But nonetheless, ridiculousness ensued…without further ado.
Onward & Upward
What do you do when the nest beneath you begins to give way? The short answer is you fly…
…which is fine if you’re a bird. And you have wings. And you know how to fly. Or you have instincts that fire and launch you into flight.
If none of those things apply, then you better flap like hell and hope that nest wasn’t very far off the ground.
Since July 2017 when I had my parotidectomy and woke up to a cancer diagnosis, I’ve felt very dependent on so many things and people and even places. I clung to things that were safe and familiar because everything else in my life was super scary and all too often immobilizing. There were places that healed me. There were people that were there for me as I struggled through the healing process, and the literal walls that surrounded me the majority of my days these last four years had me nestled comfortably with no plans of moving. But all successful birds have to learn to fly at some point.
Exactly 4 years since I started working in the UAB Department of Radiation Oncology, the Lord has carried me to a new nest. I’m now the Communications Specialist in the UAB Department of Neurology and the Department of Psychiatry and Behavioral Neuroscience. And my new favorite joke is that the Lord sent me to RadOnc to get my body fixed and now He’s sent me to Neuro and Psych to fix my brain) You can laugh, it’s ok…
This post isn’t just to say that I’ve moved on in my career, though. It’s a lot of things. Y’all should know by now that any time I put words on the page, there is deeper meaning than what’s immediately evident. There are countless hours of thinking and processing that takes place in my head before I ever put pen to paper. It just doesn’t come out right if I don’t get to the point of just spilling over.
I spent 2020 focusing on REST. I made myself take the time to learn new things, listen to more podcasts, read more books, take more walks, listen to new music, put the phone away, and enjoy my people and the outdoors, and just freakin take a deep breath. And all of that was so needed in my life. Pandemic forced us into much of those things, but can I tell you I think we all needed some time away. The slower pace of life and quality time with K.T. honestly helped me reclaim so many aspects of my life, my joy, and my personality that I felt like cancer robbed from me.
At the turn of this year the Lord laid the word TRUST on my heart, and I knew I would have a tough year ahead. Trust is something that had become extremely hard for me in faith post-diagnosis for obvious reasons. It has changed and challenged my faith in every way possible. I’ve often questioned how much the Lord protects His children given so many of us face horror and live nightmares through disease. Yet I’ve seen provision and grace heaped upon mercy and sovereignty beyond comprehension leaving no reason BUT to trust. And still, my heart asks “why” and searches for answers only the Lord knows because trust IS faith. There would be no need for Him if we already knew.
When the time came to apply for a new position at UAB, my heart sank and fluttered all the same. The nest was failing, and I knew I had to for my mental health. But I wasn’t ready to leave. I wasn’t planning to leave. And if I’m really honest with myself, I probably wouldn’t have ever left on my own without a driving force.
Earlier this year, I left. I flapped my little wings like hell and landed softly, tucking my feathers back in close to my sides. I glanced back at the nest and exhaled. Thank you, Lord.
Massive change happened at diagnosis, change that was wholly unwelcome and devastating. Yet the only clear path back to any sense of normalcy and healing from the intrusive trauma that ensued ultimately means that another series of changes have to take place. Changes that shake the core of who you are, what God has for you, what your body feels like as you do normal, human things, how your mind reacts to simple aches and pains, how you view life and the people surrounding you, and how long the list of insecurities gets (like you didn’t have enough already). Changes that take massive trust, the type of trust I didn’t have the strength to have at times.
But thank you, Lord.
Halfway through the year, I find myself reflecting as I often do, and nearly collapsing to my knees for being quite literally saved from things even when my trust and faith in the purpose of it all was frail. I needed to leave RadOnc. I needed the distance from seeing the places and people that helped heal me. We, no joke, picked up and moved our entire lives last summer mid-pandemic and built a house because there were too many places in that home that reminded me of cancer, among other reasons, but I needed the change to continue healing my heart. Yet somehow, I didn’t realize that RadOnc was part of that need until I glanced back.
I am beyond blessed that cancer and radiation left me with very minimal long-term physical symptoms, and sometimes I feel guilty for that. At first glance, I look like a normal 32 year old woman. But my right arm has minimal feeling due to radiation-induced inflammation in my spinal cord. My neck is tighter than a rusted lug nut on a tire. I get pretty gnarly headaches when stress builds in my neck and a theragun and flipping upside down on the inversion table is about all that will kick it. I don’t go anywhere without a drink because three salivary glands don’t always cut it like four do. My cheek sweats when I eat anything flavorful, often requiring me to dab it off mid-meal at the chance of people wondering why my napkin went to my ear like I don’t know where my mouth is. The left side of my face wears the wrinkles of an 82 year old woman that raised 7 kids on a farm in the deep south. And then there are the mental and emotional aspects associated with these things.
With each step I take to move forward, I can feel the memories and the trauma slipping away and I truly don’t know how I feel about it. Leaving RadOnc was a big one. The dream of all dreams is to not experience the haunting thoughts of cancer coming back for me every day, yet I don’t ever want to forget what changed me, grew me, connected me, and matured me. I don’t want to forget the things I have learned. I don’t want to lose the ability to relate and connect with those that also end up facing similar situations. And I’m led back to trust. Each and every step, symptom, and impact is something I have to trust that the Lord will orchestrate just as He has orchestrated all the rest.
Onward and Upward.
Rest For The Weary
Ive had words on my heart for some time now, but much like our prayers sometimes, these words have felt more like groans rather than comprehensible thoughts. The blank page is a scary thing for me these days. It was my solace in the darkest days of my life, yet it’s the place that I’m most terrified to return to now. There are feelings that live in that space that I’ve worked incredibly hard to move forward from. But if I am going to continue any progress forward (and if I’m still being stubborn about going to therapy) then I have to be brave and let my heart bleed on the page sometimes.
On January 1, 2020, I deemed this year my year of REST, and I’ve given it a pretty valiant effort, but I also knew when I decided that was my word for the year that I had a long way to go to find true rest in my soul again. The way I was coping with things had gotten me through treatment pretty well, but at 2+ years post-treatment I needed to finally accept that while I had certainly processed things the best way I knew how to, that simply wasn’t enough.
My emotional health was a disaster, and it was manifesting in all kinds of uncomfortable ways in my life. I could feel parts of me unraveling each day, leaving strands here and there with no way to ball them back up together. I was running from some things yet clinging to others, feeling misunderstood, hating that I was even in a place to need healing, and frustrated that I couldn’t just fix it. But while it was hard to realize that I still had work to do on myself, I also had to realize that it was OK for my healing to not be where I wanted it just yet. I was never taught how to cope with cancer and face mortality before 30.
Most of all, I had honestly lost a lot of trust in the Lord as I traveled further and further away from everything cancer (even though that seems counterintuitive). I remember questioning in the first few days after diagnosis how I would ever experience any kind of symptom again and not have the terrorizing fear of recurrence overtaking me. And thankfully I eventually learned how to be a normal human again that gets the sniffles and a headache every once in a while and doesn’t totally lose their shiz. But apparently in thought-training myself to switch out the negative thoughts with better ones, I actually just inadvertently trained myself to stuff the scary thoughts into a bottle with the top screwed on very, very tight.
Listen, I KNOW with everything in me that the Lord ALWAYS turns things for good for those that love Him, and I do. I KNOW that every single detail of my story is so carefully woven together into the most immaculate masterpiece of a story that people were going to stand and stare at me jaw-dropped as I told them about it. I KNOW the Lord’s hand was in every single second of every single detail from years prior to diagnosis, to meeting my husband, to forming relationships with acquaintances, to the moment Dr. Carroll came to tell me at evening rounds, to right at this very moment.
But how on earth do I come to terms with the fact that there is zero protection from cancer (or anything else) happening again…for my good or not. That’s still really scary to me.
Contrary to what I somehow believed in my early Christian years, being a child of God doesn’t give you any free passes in life. Quite the opposite actually. Suffering will come, and the purpose, every time, will be for His kingdom. I just wanted to skip the suffering part. For real. But I mean, who doesn’t? No one wants to suffer, but we all want the purpose in life and the feeling that we made a difference somehow. I just got both…suffering and purpose…pretty early on. I’ve suffered in more ways than I ever expected to at this point, and I’ve also been given a purpose that I certainly don’t feel fit for that I would never have had if not for a cancer diagnosis at 28. That’s heavy sometimes too.
As stubborn and angry as I’ve been with the Lord at times, the one thing I am more confident in than anything is that the Lord was with me (and still is) through every single tiny moment. He’s comforted me through emotional meltdowns where I absolutely pleaded for relief from what I was experiencing. He’s given me strength and braveness for conversations I never thought I would have to have with doctors, family, and friends. And He’s held my heart in his palm and whispered peace and guidance to me when I felt like throwing my hands in the air and letting everything go to hell in a handbasket since it already felt like it was heading there anyway.
He’s the reason I survived cancer. He’s the reason everything fell in to place perfectly so that I landed in the lap of the right doctors at the right time. He’s the reason people were introduced into my life that would provide words of wisdom and experience when I needed it most. He’s the reason I lost two jobs in a row only to start working in the department that would unknowingly treat me in the next six months. He’s the reason I started this blog as therapy for my own heart and the reason others found it and found solace in my words during their journeys or the journeys their loved ones were facing. And He’s the reason I am still cancer free.
The Lord did not protect me from cancer, that’s the hard, glaring truth.
But He did protect me until cancer, through cancer, and eventually to victory over cancer.
And that’s where I’m finding some rest these days. Admittedly, It’s been a very slow process to get anywhere near here and I have tremendous work to do still. But I have learned a thing or two about rest and how to foster mental rest this year in a healthier way amidst the chaos.
IT’S OK NOT TO KNOW WHY
Knowing why is the magic key of life to me. If I know why something was done or why something was said, I can fix it, I can do better, and I can make it better. Unfortunately, I still have a long list of things that I don’t know why they happened or didn’t and that will be the case for the rest of my life. The Lord didn’t give me that privilege and that much control on purpose, nor do I need it. I mean, for real, I don’t even know if its safe for me to actually know and understand why some things in my life took place…but don’t think my stubborn self won’t completely exhaust myself trying to figure it out.
Some things I won’t know the answers to until I reach the pearly gates, and those things I’ve come to terms with not knowing why…but only those. I’m still working on the rest and working to accept that I simply don’t need to know why. Things happened like they did because they were supposed to, and that has to be enough from now on. Send prayers.
PEOPLE COME AND GO, LET THEM
I spend and have spent a lot of time reflecting on friendships and relationships of all kinds. The complexity is fascinating to me, but also I love being helpful and adding value to someone’s life so I’m always processing how I can do that more effectively. I’m a fixer. I’ve seen a lot of friends come and go in my life and most of that’s been the natural fluctuation. However at some point recently I realized that many of my close friends have fallen away in the last decade that had weathered much of my formative years alongside me…and most without expressing any reason. Womp. Womp.
As I’ve grown into my 30s, I long for my friendships to be much deeper than they used to be. I need my close friends to understand me and be willing to talk about real life. I want my friends to not flinch when topics reach beyond what looks and feels good. I need them to stick around when they ask how I’m doing and I’m honest and needing a bit of wisdom. And I need them to share in the fun and light-hearted laughter of daily life with me.
It’s unrealistic to have the expectation that friends are forever. Cancer knocked out several of those for me, but I would be lying if I said I’ve found closure on my own with all of those. As you can probably guess, my instinct is to find out what happened so I don’t make the same mistakes in future friendships and that’s not realistic either.
The reality is that friends have the ability to make choices for themselves that I don’t get a say in. The choice for me has to be knowing my worth and making sure I maintain that in the friendships I keep. I have to know at the end of the day that I did the best I could, and I’m worthy of having people that love and care about me. I’m worthy of support and my own little cheering section that will pray for me, listen to me, and have my back when I need it. So I have to learn to rest my mind and find peace in my worth rather than reaching for reasons from friends that didn’t see that worth.
STAY PRESENT
My core motives in life are to find meaning and be meaningful. Often times that carries my thoughts off into la la land where I’m contemplating why trees grow like they do or what life might be like had certain events not taken place…it’s that whole butterfly effect thing Ashton Kutcher taught us about in 2004. Lots going on up there in the ole noggin always.
Social media has also created a space of comparison and reminders of people and things that we might not normally think about. There’s the normal harassment from parents about always having to have our phones attached to us too. So, while this pandemic has forced us to slow down and spend more time at home with only those close to us, I have been practicing leaving my phone behind more. It’s good for my soul to observe the beauty before me and soak it in as a memory rather than always whip my phone out to take a picture (that never does what my eyes see justice).
It’s also forced me to express myself and describe life more through words rather than always relying on a picture or something else and that’s something I needed. I’ve lost many authentic moments looking through my phone for a picture that I was reminded of in conversation when my description would have likely been sufficient.
So, I’m learning to stay in the moment and appreciate life as it is before my eyes. I’m learning to lean into the Lord again for comfort and peace and learn what it means to be a true Christian again with full trust in the Lord no matter what valley we walk through. And I’m learning to let things come and go in my life and understand that what is meant for me will find me (and stay) and what has run it’s course and is not productive any longer will go.
Onward and upward.
The Mind and The Man
“Where the mind goes, the man follows.”
That’s a quote I placed neatly into my pocket in college and have carried with me ever since. The mind is a powerful vehicle that drives us from place to place, to the past and ahead to the future, but it isn’t always as easy to steer as we’d like. Sometimes we find ourselves chasing thoughts that lead us into darkness and unhealthy situations, but equally so, our thoughts have the power to lead us to positivity, growth, and a healthier state of mind. Our mind is a rudder, and it’s truly up to us whether we anchor in still waters or whether we capsize and have to fight the current to get back in the boat.
With diagnosis, a wave of inevitable uncertainty and fear swept over me. Cancer is certainly the scariest thing I’ve faced, and honestly I may never forget how I spent the first several days post diagnosis face down in the couch absolutely pleading with God for the pathologists to have made a mistake. For the years (yes, years) to follow I felt defective. I felt betrayed by my body and by my God. I felt broken, labeled, and essentially lost as a human. I was for sure I was dying so many times it’s almost humorous now (and God bless the people in my life that listened to me absolutely spiral in those times).
While things have somewhat returned to “normal” in the sense that I don’t think as much about cancer like I used to, the Powells have been through quite a bit this year since I last posted six month ago. However, January started off quite lovely.
We celebrated the new year with friends out to dinner followed by an evening at our house cozied up on the couch just as we like it.
We had the grand opening of our UAB Proton Therapy Center at work, which means more options for my fellow Alabamians and beyond for radiation treatment. (I swore I would never sit or lay on a gantry couch ever again…but I’ve watched this place come to life from the ground up and I couldn’t resist hopping up for there for a quick picture. And besides, this gantry is way cooler-looking than the sTx that treated me.)
We had our annual ROAR Gala raising over 300K for cancer research in the UAB Department of Radiation Oncology. This is basically RadOnc prom, but always a fun to dress up for a night out with your coworkers.
Then we took a trip to Jackson Hole, WY at the end of January for our annual ski trip and adventuring. We took a sleigh ride through the elk refuge in the basin. We hit the slopes for two days. And finally, we snow-shoed 4 miles through Grand Teton National Park. And let me tell you, snow-shoeing in thin air and freezing temperatures is no joke. If anyone else other than my husband had convinced me to go on that hike I probably would have stabbed them with a ski pole for telling me that it was a good idea. It’s intense. But we made it to this sweet little spot on a lake that you couldn’t tell was a lake due to the literal feet of snow that we almost got stuck in and it made the whole experience worth it. No joke almost had to leave the hubs there…jk I would never leave him behind.
Finally, on Feb 1 we returned home to Birmingham only to unknowingly close out the last bit of normalcy we might see for the rest of 2020. We picked up our puppy kids, and quickly noticed our oldest wasn’t quite right. The next day, he was devastatingly diagnosed with terminal kidney cancer and was given literal hours to live. He was seemingly perfect when we left him just 5 days prior, but he’s our stoic buddy that wouldn’t have let us know he was hurting until he was really sick.
Five weeks later, we lost him and then sold our house. A third cancer diagnosis (my mom, me, and then Fox) since we moved to that house four years ago was more than enough for us to list the house and look towards to the next chapter of our lives. (Not to mention the places in that house that gave me PTSD from treatment.)
Sometimes it takes big changes like that to fully clear our minds and change our thinking.
As we left for the coast Thursday afternoon, the passing miles gave me the chance to sit with my thoughts. The crawling feeling of unsettlement intensified from shoulder to shoulder. I started to think about the last six months and my recent year’s past when I think about the current state of our world, through the COVID-19 pandemic, through the racial and social injustice, and the heartbreaking loss our world is experiencing every day. Our culture has developed its own kind of cancer recently, and the fear and uncertainty is palpable.
With July 6th being the 3rd anniversary of the parotidectomy that turned our world absolutely upside down, my subconscious (as well as my conscience) tends to come after me again. At this point, my thoughts no longer terrorize me about the possibility of anything coming back, and that’s dang Jesus miracle. It’s more so the heaviness of the fact that life can and WILL drastically change in an instant. I’m certain we all know that, just as much as we know that no one makes it out of this life alive, but when the actuality of uncertainty hits us head on life carries a different importance.
I’ve found myself at the beach on anniversary day twice in the last three years since surgery. I don’t like to be in Birmingham on July 6th. The beach gives me space to ponder the “whys” that I’ll never know the answer to on this side of heaven, and the beach reminds me of the faithfulness of the Lord with the waves that never cease to flow in and out as day breaks and the sun sinks into the horizon once again. The sounds of the shore drown my thoughts to a low murmur yet the staticky whir allows them to crash and tumble about just as the tiny grains of sand do.
Sometimes I walk, letting the waves splash up on my legs. Sometimes I read, trying to inspire some words to fall out on to the page again. And sometimes I just sit, staring at the immensity of the ocean and let the waves wash over my toes. This trip I did all three. The unsettling in my shoulders just wouldn’t shake off. And I couldn’t figure it out. And Lord knows I can’t stand it when I can’t figure things out.
As the sun began to set for the afternoon, K.T. came and took my hand and gently pulled me up out of my chair and walked with me hand-in-hand along the shore. He asked me what was on my heart and listened as I shared what I thought was keeping my mind busy and simply told me he understood. He’s the kind that directs my thoughts towards the blessings and reminds me that what I’m feeling and thinking is normal for what I’ve been though. And these moments are so very valuable to me. It’s the replacement and these thoughts and feeling understood that has given me strength through the storms.
February to now hasn’t been anything we thought it would be, and if we’re honest we knew it wouldn’t be despite the pandemic or anything else. That’s just not realistic. But K.T. and I have worked hard to remind each other of the love and mercy the Lord continues to pour into our lives, especially living in less than half of the square footage we had before we sold our house while we wait for ours to be built. We’ve steadied each other in times of chaos (yes, I’ve been the sane one a few times :)), and we’ve looked forward with hope as we continue to seek the Lord and the intelligence of physicians to someday bring Baby Powell home in our arms.
Reflection keeps me humble. It reminds me where I’ve been and how far I’ve come. There are still times where I get stuck in the fray of scary and negative thoughts, and I have to remind myself that just as it takes time to get to those places of fear, it also takes time to return to more positive thoughts and progress.
Reflection reminds me of the places I still need to go. And it reminds me once again that people are all that matter. Relationships need nurturing, and the hearts of others are more valuable than anything else in this whole world.
“Where the mind goes, the man follows”…I’m steering this man towards hope and heaven.
May you all be blessed in the days to come. Onward and upward to year 4 without Glanda! Praise God!
Have Yourself A Merry Little Cancer
It’s the most wonderful time of year! The season of merry and bright, marked by twinkling lights, joyful celebrations of Jesus, gifts neatly wrapped beneath a perfectly trimmed tree, and dinner tables dressed for company. Families get together and share stories of old and memories of loved ones and friends gather to catch up on life that has slipped away without visits or phone calls. There are stories of redemption and blessings beyond comprehension that take place each and every year, but the older I get the more I begin to understand that the Christmas season is much more morose than merry for some.
Christmas has always been my absolute favorite time of year! I get giddy and regress to childlike innocence observing all the magic that the season brings. I love thinking about how my family might react to the gifts that I’ve carefully picked out for them. I love brisk winds, hot chocolate, Hallmark movies, and cozy blankets. And I love that Christmas brings a certain romanticism along with it.
After being faced with unexpected diagnosis two years ago, the holidays lost a bit of their magic for me, and I hate that. I allowed myself to feel everything completely the first two years in hopes of it healing me in some weird way, but this year I started reflecting on the holidays early and did some serious heart checking to get to the bottom of why Christmas was evoking different, less merry feelings.
Diagnosis, grief, healing, and loss…they change things in your heart, and they don’t ask permission first. It happens before you can stop it and before you know it you find yourself crying on aisle 6 on a Wednesday because the tiny twins dressed in matching Christmas outfits remind you that diagnosis means your future isn’t how you thought it would be. The light inside has dimmed and it feels like you just don’t have anything left to give after all you’ve been through.
Emotions creep in and take hold of our hearts to have us thinking things like, “Will I be around for Christmas next year?” or “Should I make sure I tell my family I love them in case something happens to my health suddenly? Or theirs?” How many times does the devil take advantage of our fragile states of mind and mock us sending us straight into a scroogy slump? It’s not supposed to be like that. The emotions we’re intended to have this time of year are supposed to be of joy, great cheer, and of new birth…Jesus, a Savior!
But it’s not quite that easy. It’s not a flip of a switch or anything close. Trust me, I’ve tried. And with the instant gratification generation that technology has created for us, it’s even more frustrating to know how to navigate. A return to a “Merry Christmas” is a slow shift of thinking and a re-focusing as with most things. But while the last two Christmases have been slightly less than magical for me, I’m determined to find my way back and whether this reaches your heart this year or not, I hope my words evoke at least a twinkle of a sweet memory and truth for you to rest in.
TIME
One of my favorite memories as a child is hands-down Christmas morning. I was always the first one awake and I would run down the hallway into my brother’s room exclaiming that Santa had come (until he got smart enough to lock me out and barricade the door). And then I was flying down the stairs to leap on top of Mom and Dad’s bed to do the same. Of course, I didn’t realize (or care) that they had stayed up well past midnight wrapping presents and I was waking them up after only a short nap…SANTA HAD COME!
It wasn’t long before I was yelled at and left sitting in the living room alone anxiously waiting to open presents for the next 30 minutes. But I knew that soon enough Mom and Dad would emerge in their white and royal blue robes respectively and John would come down the stairs with one eye half open and some assortment of pajamas that were within reach when he grumbled out of bed. Family time was coming and we would all be in the same place, at the same time, doing the same thing. No tv, no phones (back then), no distractions.
Family time wasn’t something I remember having in abundance growing up. We were a military family so Dad was often deployed or working long shifts. Mom was busy making sure John and I were fed, bathed, clothed, generally cared for, and not acting like complete idiots. I spent most of my evenings at the dance studio, and John was wherever John was. I do remember having dinner as a family on the nights we were all home but other than that, Christmas is the family time I remember.
Christmas was the time when the people that built me gathered around a decorated spruce and celebrated thoughtfulness, meaningful gifts, and the magic of togetherness. It was a sacred moment for a variety of reasons, some that I didn’t understand until I was much older, and it continues to be sacred as it is still time set aside specifically for all of us to meet back up in the same place, regardless of what has happened or hasn’t happened, and just be with each other.
Time is valuable, and it passes quickly. People are carrying around burdens of the past that don’t belong on them. Memories of bad Christmases from childhood, family arguments, things you wish you would have done differently, words you wish you could take back, hugs you wish you had given… These are certainly things to learn from, but what if we stopped looking behind us and instead looked around us at the people, the opportunity, and the things we do have.
This Christmas, take the time, spend the time, make the time, open your schedule, put away digital distractions, slow down a little bit, say what you mean, apologize, and enjoy the time you’ve been given. It will be worth it.
PEOPLE
Through high school and college, I kept to myself most of the time. I had my close friends, I had a boyfriend, and I had my dance friends, but I wasn’t the life of the party, the popular girl, or the girl with all the answers in class. I listened to Dashboard Confessional and Yellowcard on repeat. I journaled and wrote letters often, and I preferred to hide away in my thoughts and feelings rather than creating small talk with people. I did what was expected of me as a daughter and student and I kept it moving.
The older I’ve gotten and the more life I’ve experienced, I’ve started to realize that people are actually just complex reflections of our own selves and experiences that hold an infinitude of wisdom within. Everyone has stories to tell and perspectives to give. There’s a certain instinct inside of us, too, to connect with others and feel understood to some capacity, and it just so turns out that my desire to be understood is quite a bit deeper that I thought.
People matter tremendously to me these days, and that’s saying A LOT coming from an introvert. Cancer obviously taught me a lot about life, but when I reflect on what I’ve been through and access how diagnosis has shifted my perspective, it’s simple…it’s people.
People helped me find my way again. People lifted my chin and showed me the tiny miracles that happened in the midst of it all. People talked me through the hard times, provided perspective, checked on how I was doing through treatment and beyond, shared stories of their own struggles to give me some peace, pointed me back to Jesus when I get angry, shared scripture to keep me grounded, and prayed for me constantly. People supported me through my advocacy and survivorship endeavors and encouraged me to put myself out there when I typically wouldn’t have.
Learning about one another is what makes life rich and lovely. Listening to stories that were memorable enough to have an impact is valuable. Sharing the emotion that comes with experience is what connects us to one another. And listening to these stories is what draws a line between us. It makes us feel like we’re not the only ones, and being vulnerable through the hard times is what settles our hearts and helps us feel understood enough to move towards healing.
So I’ve learned to ask the hard questions that I wish someone had asked me when I was struggling or confused. I’ve learned to listen even when I have other things I probably should be doing. I’ve learned to be open and available to others and I’ve tried extra hard to keep up with the people in my life that care for me well so that they know that I genuinely care for them too.
I beg you to step out from yourself a bit this Christmas. Let someone into your world, even though it’s uncomfortable. You just might learn something unexpected.
JESUS
It’s no secret that Christmas is about more than cheerful elves in a far away workshop, a jolly old man in a sleigh with eight tiny reindeer, and giddy kids finding presents wrapped beneath the tree. It’s about what happened in Bethlehem many, many years ago when the Virgin Mary gave birth to the precious son of God.
Many of us have heard that beautiful story from the manger since we were little, but the true magnitude of what the Christmas story actually means for all of us is a bit hard to comprehend. If you’re anything like me, the miraculous beauty and glory of it all didn’t really hit until adulthood.
I graduated from Auburn in December 2011, moved back home to Birmingham, and had absolutely NO idea who I was. With some friendly encouragement, I decided church was a great place to start in figuring that out and slowly found my way again.
Christmas of 2012, tears streamed down my cheeks as I realized Christmas truly meant that God was with us…every day, every minute, every thought, every joy, every disappointment, every high, and every single low. Also, can we talk about Mary for a minute? To carry a child that you just woke up pregnant with one day? I’m pretty sure any normal human would need Jesus to get through that one. And Joseph? Lord have mercy the questions he must have had. But with grace, mercy, and sweet, sweet sovereignty, it is now much easier to understand why the Lord gave us the gift of his constant presence.
There have been many moments through diagnosis, treatment, and overall healing where I was mad at the Lord. Really, really mad. I wasn’t upset for being diagnosed…I get that things happen. I was just mad that cancer stole what I thought was supposed to be my future and a few weird physical things. Mom had already been through breast cancer treatment just two years before me. Wasn’t that enough?
I prayed my raw little face off through treatment and beyond. I physically felt the Lord provide His strength in my weak body each day. I felt His gentle pushing to get up and keep going with the promise that I would see the other side of this with great blessing some day. But as time moved on and life became more “normal” again, something shifted inside my heart and I pulled away a bit.
Things finally broke July 2019. I tanked in every way. I was more terrified of recurrence than I had ever been. People I had come to know with the same or similar diagnoses to mine were dying, and I had a BIG milestone coming up in October. I couldn’t get my thoughts to settle on anything rational no matter how many pep talks I had. But the Lord still met me in that place.
When I started my soul searching soon after ASTRO in September, I made sure to try and include Jesus in all of that again more intentionally. I mean He was always there and I was still faith-filled but it was just different. I wanted and needed Christmas to be magical again this year instead of dull and flat as it had the previous two years. Man, that still hurts to admit. But now we’re here…
I know everyone views Christmas and faith differently. I’m not here to push anything, but can I just encourage you to think about Christmas a little differently this year? For me, it’s noticing the provision. The provision of a constant ally and the comfort of someone who never fails to understand. Jesus wasn’t just sent to earth for fun. He was sent to experience life in the flesh so He could tell His Father just how hard diagnosis, grief, healing, and loss really are. It’s also noticing family. The people that have loved and supported us whether biological relatives or not. Remember, Joseph was never the biological father of Jesus. And it’s taking notice of the time that someone put in to pick out a gift especially for you or make a dish or dessert to enjoy together.
Christmas can be different this year despite the hurt and the hustle and bustle of what has become commercialized Christmas. It’s time to believe in the magic again!
Big Bad Cancer: My, What Big Blessings You Have
A precious friend of mine and former UAB coworker has a ministry blog titled Ewe R Blessed and graciously asked me to be a guest writer! She asked me to write about all the blessings of cancer, which may sound counter-intuitive to some, but for me, cancer truly has been one of my biggest blessings. Below is the post I wrote for Ewerblessed.com. Take a look!
Diagnosis and the days to follow were some of the hardest days I’ve lived on Earth thus far. No one expects to be given a cancer diagnosis, but even fewer expect a cancer diagnosis at 28 years old after going in for a simple surgery to remove a benign tumor.
That day came for me on July 6, 2017, and it came while I was still woozy from surgery. My surgeon had come in for rounds, and he didn’t waste any time getting to his suspicions.
“We noticed a cribiform pattern in your tumor once we got in there. We have concerns that your tumor had some cancer in it. We won’t know for sure until pathology is confirmed, but that’s what we expect the results to be.”
I fired off a zillion questions and absorbed as much information as I could in the post-surgical state that I was in. After roughly 15 minutes, I turned to my husband and family as Dr. Carroll left the room. What. Had. Just happened. That was NOT how that was supposed to go.
My tumor had fooled me like a wolf dressed in sheep’s clothing. It wasn’t the Matthew 7:15 kind of false prophet, but it was definitely not what it presented itself to be.
Every single test that was done prior to surgery had come back as benign, and I had trusted that it was. To this day, I still don’t believe that any of those tests were wrong. My tumor was benign in some spots (most spots actually) but it just wasn’t time yet.
In hard seasons and in the moments that feel like you just won’t make it through, it is often easy to slump into fear and anxiety as well as pity, but the Lord wants more than that for us. He wants us to lean into Him, learn about His mighty and sovereign nature, and the way He has ordered our steps to care for us in the most gracious ways.
For me, it took some time for me to notice these blessings. Every worst case scenario came to mind as I grieved the life I thought I would live and began to accept the life the Lord had for me. But that doesn’t mean that the Lord was responsible for my cancer…sin and evil are still real. It means that He planned all along to be my provider, my protection, my refuge, and my healer through it all if I let Him.
These are the ways in which the Lord led me to and protected me through the darkest days of diagnosis and beyond.
THE BLESSING OF MARRIAGE
My husband K.T. and I had only been married two and a half years when I was diagnosed. I remember K.T. being the first one I locked eyes with after Dr. Carroll told me it was likely cancer. His eyes were dry and solemn, and it confused me. I thought he would be as broken as I was, but he had known for several hours then that cancer was likely a part of our story now and so his eyes had had time to dry.
While I’ve still never seen any sadness from him in relation to my diagnosis, what I have seen is love and support in the truest and kindest way. He has been still and steady and he’s never once wavered from the truth the Lord gave him day 1 that I was going to be fine. He’s prayed for me and with me and he has helped me feel understood and beautiful amidst a terrifyingly unsure situation.
The Lord gave me this man. I audibly experienced the Lord say, “There he is,” in church about a year after I had met K.T. And I am as sure as the day is long that there is no other human on this earth that could have and would have cared for me in all of the ways he has in the last 5 years of marriage.
THE BLESSING OF THE RIGHT JOB AT THE RIGHT TIME
I lost two jobs in a row. One in April 2016 that I had been at for two years and the other in Feb 2017 that I had worked for nine months. As both employers told me I was being let go, I respectfully asked what the reason was and what I could have done better, and they gave me the same answer…nothing. There was nothing they could tell me as to why I would no longer work there.
In March of 2017, I became a UAB employee in the Department of Radiation Oncology. It was a research position that involved reading clinical trial protocols and the first one I was handed was RTOG 1008…a protocol for treatment of salivary gland cancer.
It didn’t take long for me to schedule a follow-up scan on the lump that had been in my neck for seven years after that and that set of imaging was honestly the only ones with results that didn’t sit well with me. I pushed for a second opinion from one of our physicians and now we know why.
Seven years of appointments and follow-ups for that lump in my neck in addition to two lost jobs is what the Lord ultimately used to gently lead me towards the place that saved my life. I was able to be treated right there in the department that I work in by my coworkers and constantly checked on in case I needed anything during that time.
THE BLESSING OF PERSPECTIVE
I’ve always looked at life with zeal and excitement. I get giddy about seasonal changes, Christmas, and nostalgia. I take time when I can to smell the roses and notice the subtle changes of the world around us. And I am fascinated by the depth of people. But at some point, it hit me that I just might not live in my 70s or 80s like I always thought I might.
The thought of mortality from diagnosis shook me to my core. I fought constantly to get the image of leaving behind my husband and potentially our kids if we were blessed with any. I couldn’t bear the thought of K.T. coming home from work to an empty house or going to sleep beside just my pillow and not my warmth. I know it all sounds very morbid, but I’m not sure if I would have ever experienced this shift in perspective would have ever taken place if it hadn’t been for diagnosis.
I’m so much more likely to drop what I’m doing and go spend time with friends or family these days. I don’t mind taking a stroll around the neighborhood in the fresh air even when my to-do list is long. And I make sure to smile at everyone I make eye contact with. We truly just can’t know what someone is going through or how long until our time on earth is up.
THE BLESSING OF FAITH
There’s a quote that sums up what most of my faith journey has looked like thus far.
“Faith means trusting in advance what will only make sense in reverse.”
Things seems crazy, and then make total sense when I finally have some distance and I’m able to reflect. I like to know what’s going on. I like to understand, and I like to have a heads up on what to expect. You might even could say I have trust/control issues, but mostly when it comes to things of the future. It’s that whole wolf in sheep’s clothing thing. Is it a sheep or is it actually a wolf. How do I know? Do I even need to know?
Cancer has put me on my face more times than I can count. I continuously prayed that the Lord would heal me and give me hope and peace through everything I was to face. And He assuredly did. But since treatment and healing, I’ve been super skeptical with the usual trust I had in symptoms and medical results. I trusted before, and I ended up with a cancer diagnosis (which I now know was protection of my heart) but I don’t have any proof that something isn’t going to blindside me again like it did the first time. And that’s scary. I don’t know if my heart can take it.
Very, very slowly I have realized that I don’t need proof of something God already has control of. I’m starting to come back around and truly comprehend that the Lord has my best interest in mind and if that means taking me to heaven sooner than I think I should go, then that’s what’s best. It’s just a really hard pill to swallow.
Cancer has changed my heart. It’s taught me lessons, and stirred up my soul. It’s shown me truths I probably never would have seen. It’s led me to people I, for sure, would have never crossed paths with. It’s provided me opportunities I would have never had without diagnosis, and it’s shown me so much about life and beauty and relationships.
ASTROnomical Blessings
September 11, 2017 was my first day of radiation treatment for my surprise cancer diagnosis I had received just two months before during a regular left parotidectomy for a pleomorphic adenoma. The days to follow were the hardest days I’ve ever faced in my life. Absolutely nothing could have ever prepared me for the upside-down thinking, the excessive tears that fell, and the physical failures I would experience as each one of the 30 total treatments passed. By the end, I was brittle and broken and faced a insurmountable amount of emotional struggles to find stability in what the next days, months, or years might look like if I was afforded that kind of time.
September 14, 2019 I boarded a flight to Chicago, IL to serve as one of nine social champions and the only non-MD, non-PhD representative for the American Society of Radiation Oncology (ASTRO) annual conference. (And to host two UAB events I planned for the department)
Isn’t God good, y’all?
If you’ve been following along for any amount of time or simply talked to me in any capacity, you know how raw and ugly my healing has been the last two years. Fear of recurrence has eaten me alive and stolen precious moments from my present while emotional turmoil has caused people to pull away or just consider me too much of a hassle to deal with. But you don’t make progress or get to where you want to be without resistance and persistence.
I woke up Saturday morning at 3:30am like I was going back to Lake Tahoe (my favorite place for obvious reasons). I had been looking forward to this trip since the day I was invited, but not once had it crossed my mind that I could potentially be walking into PTSD hell by going to an entire conference centered around cancer and more specifically the sole treatment I experienced…until we were 5 minutes out from the airport.
We pulled into the departures lane and my legs begin to quiver. My heart was racing. The back of my neck down to my fingertips were hot and flushed. The pit in my stomach was getting heavier by the second, and I was fairly sure I was going to be sick. There was no way I was getting on that plane. My very methodical and measured husband was starting to worry I was going to miss my flight as I sat in the passenger seat and tried to get my mess together, so I downed 2 dramamine and an extra dose of anxiety meds for some forced semi-sedation and willed entry onto my intended aircraft.
I spent my afternoon at McCormick Place, where conference would be held, while things were still quiet in anticipation of how overwhelming the next few days would likely be. I knew I had zero chance of absorbing as much information as the physician attendees, but I was hopeful to comprehend about 70% of the content at best. Top that with having actually experienced the very treatment being discussed for 4 days, I felt like it was probably smart to prepare myself. (It is now very clear that I was not smart for agreeing to this in the first place.)
Sunday was the first day of conference and also a big day for me as the UAB Marketing and Communications Coordinator. I had my first sessions of my first ASTRO ahead of me as well as the #tweetup where I would meet many of my fellow social media champions, mixed with a bit of pressure to represent patients well and share knowledgeable opinions. Sunday was also the day that I was hosting two events that evening for UAB: A steering committee dinner for the alumni program I’m starting in our department followed by our annual UAB reception.
Monday was my final day at conference so I made sure it was a jam-packed with every session I could possibly fit in before departing for Midway later that evening. We even organized a #retweetup because we all had too much fun at the original #tweetup. And by the time it was time to say my goodbyes, my heart was torn in a zillion different directions.
So how was my first experience at ASTRO?
As embarrassingly cliche as it is for me to utter as a writer, this experience is rather hard to explain for me. It changed parts of my heart that I had been ignoring. It widened my perspective on the physician side of things and how tirelessly Radiation Oncologists work to make what they do beneficial to the highest level and more comfortable for patients. It mesmerized me to see how much camaraderie there was among all of the attendees rather than competition, and it humbled me to see how determined everyone was to learn and better themselves for their patients while leaving their egos aside.
I had intense insecurity going into this being a nobody, 30yr old girl from Alabama that just happened to have been treated for head and neck cancer two years ago. My intelligence was questioned at times as to what I could possibly get out of a conference like this not being a physician or clinically inclined in any way. My ability was doubted to be able to attend conference and also do what I needed to do for the events I had planned while still keeping up with my other responsibilities. And a variety of fears surrounding overall acceptance severed my hopes of making a difference at such a large venue.
When I look back, even though it’s only been a few days since I returned home, I’m proud of myself. I somehow found my place in a sea of brilliant-minded MD/PhDs. I mastered attending enough conference to fulfill my social champion duties and also put on two successful events for UAB. I was received with authenticity from humans who owe me nothing and I very well may never see again. And I experienced quite a bit of unexpected healing in my soul that I know I needed desperately, especially with my two-year post-treatment anniversary and scans approaching on October 20th.
The journey to this point was incredibly hard which is no secret if you read any of my previous blog posts, particularly the ones early on. They’re gut-wrenching for me to re-read, but sometimes I force myself to so I don’t ever forget where I came from (although that would be nice sometimes) and so that I continue to heal and process what it means to be a 30 year old cancer survivor in a healthy way. I have days where I get frustrated with myself that I don’t have more to share these days, but there’s also a blessing that lies within that. Life is calmer and I have less doctors appointments and scans to attend, and I don’t take that for granted by any means. I’m moving more towards “normal” and I don’t feel as much like I have a giant “C” for cancer as my scarlet letter across my chest constantly. Thank you, Jesus.
So ASTRO: The beautifully magical unicorn of an experience, THANK YOU for every tiny little thing you sent home with me from the friendly faces to the non-coincidental, God-sent Uber drivers that also had stories of cancer, healing, and hope. THANK YOU for trusting me as the sole patient voice in the group. THANK you showing me the future of radiation care for those that will unfortunately hear the same words I did. And THANK YOU for believing in me. You have my heart!
There ARE a few special folks that deserve some extra love for standing in support of me and sitting back to watch me go get ’em (as we say in the south).
Jeff White found this very blog well over a year ago and made sure my story was featured on RT Answers last summer. He was also the one to reach out again earlier this year to invite me to be a social champion and patient advocate. He’s the one responsible for making this all happen.
The other social champions of #ASTRO19 who followed me without question, listened to what I had to share, liked, retweeted, and commented in support of me before, during, and after conference. And my goodness, were they precious souls when I finally met them in person!
The 61st president of ASTRO, Dr. Ted DeWeese took the stage on Monday with a presidential address full of promise and progress in the field of radiation. So much so that I went and found him after the session and the first thing he did after I introduced myself was hug me and look me straight in the eyes to say, “Bless you. I’m so glad you’re here.”
My lifesavers: Dr. Bill Carroll who was my surgeon and the one who quietly gave me the news during his post-op rounds, Mrs. Kristi Gidley, the PA for Dr. Carroll that has blessed me each and every visit with her wisdom and gentle nature, Dr. Sharon Spencer, my fearless RadOnc who treated me right here in our department and has always made sure I’m cared for, Dr. Sam Marcrom, who was a PGY4 when I was diagnosed and has been a wonderful friend and colleague ever since, and finally Ms. Laronica Conway, my coworker and the sister I never had that has kept me grounded more times than I can count and pointed me to the Lord all the other times.
The UAB Department of Radiation Oncology: I was hired in this department in March 2017 before I had surgery and was diagnosed in July of the same year. It has been a whirlwind but they are the ones who, at the end of the day, made it possible for me to attend.
My parents. It goes without saying that these two would believe in me. They brought me into this world and let’s be honest, I’m their favorite daughter. (Note: I’m the only daughter) But the days leading up to my trip and the morning I left were filled with encouraging texts of best wishes and a wonderful time in the windy city.
And my precious husband K.T. Lord Jesus, I’ll never be able to give back as much as what this man has given me. From bathing my feeble body post-surgery because I was unable to do it myself to cheering me on in literally everything I’ve ever tried to do, whether I succeeded or not, he has been by my side and has loved me fiercely, unconditionally, and without wavering every single day.
So needless to say, ASTRO provided ASTROnomical blessings for me as a patient, as an employee, and as a human, and I am eternally grateful! See yall in Miami! (hopefully 😉 )
Gone, Glanda, Gone 