9 Month Check-up
When three different people mentioned to me in the same day that you haven’t written on your blog much lately, I knew it was time I sit down and write all the stuff I’ve been neglecting to write over the last several weeks (or longer).
Life has been the most normal it has been lately since surgery day last year. I’ve also found myself quite thankful for something as dumb as distraction in my life. Ten girls from Samford University now call me Coach Val, and I spend many of my days dreaming about how I can build the program and teach and mentor them better. I never in my life dreamed that would be the case but these girls have taught me so much already about life as well as patience, and they’ve helped with that little word us “cancer patients/survivors” are always seeking…normal.
But while life continues to trod along steadily for the most part, I would be a total fraud if I led you to believe that every week is like that now. The weeks leading up to scans back in August (and even some days since then) were still absolutely terrifying. Scan week was still filled with complete irrationality and exaggerated thoughts, and as I usually do, I rode that familiar emotional roller coaster and even steered right off the tracks a few times, but I managed to get realigned and return to a smoother ride shorty after…thanks to K.T. and the Lord’s undeserving grace.
I’ve continued to work really, really hard on my thought-life because it’s still what tears me down the quickest and with the strongest intensity. And with plans to vacation with my in-laws the week before scans, I continuously said that I wished that that beach trip was coming after scans instead of before so I could relax mentally. But it wasn’t, and now I know why.
We sat on the shoreline that week talking and thinking about life. (Y’all know I love nostalgia and introspective thinking.) We discussed the intricacies of the Lord’s beautiful creation He’s given us and how the waves sparkle just right when the sun hits them. We dug our fingers and toes in the sand and let the grains pour back down delicately. And we talked about the life we’ve lived together and the dreams we have of the life we hope to have ahead of us.
After conversation subsided for a bit, my hands gripped the sides of Joyce Meyer’s Battlefield of the Mind. It’s a book that I had pulled off my shelf to read many times before but had just never gotten into. It never felt right. But this time…this time the words settled in deep and washed over me just like the tide at my feet. In the sweetest way, I felt the Lord tell me to let go. He gently reminded me that in all my moments of fear and anxiety as well as reasoning with myself I had done since the day of diagnosis and before, I hadn’t gotten anywhere. The fear wasn’t gone and I never, ever found the reasons I wanted. All I was doing was exalting my own thoughts above the Lord’s sovereign plans and acting like I could run my life better. That one hurt.
How simple, right? Just “let go”…nope. How difficult?! I find myself down right pissed in these moments feeling like what I’m supposed to do is actually impossible (mostly with my health and thoughts) and then I come around to realize it’s probably my selfish pride making me feel that way. That one hurt too, but when it comes down to it, I can absolutely fight the fear and the anxiety and quit trying to figure everything out. It’s just going to take time. As it’s taken time for my body to heal, it will take time for my mind to as well. Cancer is NOT nice.
On the other side of things, I think about how precious it would be to hear those sweet words, “everything still looks good” from my doctor when I return for checkups. It’s an unmatched, indescribable feeling that I often dream about until it isn’t a dream any longer.
This time on August 8th, the Good Lord allowed it to go from dream to reality and let me hear those words once again through my doctor in His still calm voice. Clear scans after 9 long months since treatment ended. I’ve definitely had my share of post-treatment struggles and also my share of unexpected doctor’s appointments, but all those seems to drift away into the periphery in these truthful moments of knowing my body is healthy (and these days, healthy means “without cancer”).
This round also delivered an extra bit of news we are pretty excited about…the blessing from my doctors to make baby Powells whenever we get ready! (Side note: We were advised to wait since my frequent scans could transmit radiation to a baby if we were to get pregnant before this first year of surveillance was up).
As I sit here polishing off a post that I’ve been working on since the week after my August scans, I find myself filled with giddy excitement and the confidence that I’m a healthy almost 30 year old woman of child bearing potential. (It almost feels like I’m back where I thought I was before all this happened last year and last year I NEVER thought I’d get here again). I wake up most days with the joy in my heart that life is normal again, numb arms and all, and I’m thankful I still get to have an impact on patients that come through our clinic and hopefully through my writing a bit.
So, while this is a post that may seem somewhat nonchalant, there so much more than what you’ve seen to get me here. Only Jesus and my husband know how hard I’ve fought for the status so many take for granted…normal. I think I’ll hang on to that one for a while.
Onward and upward.
The Cancer Never Leaves
I read an article yesterday on surviving suvivorship, and it struck a chord in me…several actually. The title grabbed me because of the notion that survivorship might not be the walk in the park that it seems to have the reputation for. The article is a short interview with a woman, a mental health counselor, that has fought cancer and her perspective navigating life after cancer.
I’ve thought about what it means to be a survivor so many days since diagnosis, and wondered if I would ever forget about cancer. The short answer is “no” but it’s way more complicated than a simple no. I’ve thought about if I even wanted to be labeled a “survivor.” Maybe I just wanted to be Valerie, or maybe I just wanted to live like normal. But the facts are different. When you have cancer and you make it past the moment they confirm your diagnosis, the label “survivor” gets smacked to your forehead with superglue. Can’t. Take. It off.
Cancer never leaves you. It comes unwelcomed, it’s treated (cured in some cases) and then you spend the rest of your days and years thinking about it. It never leaves. It never goes home. Never goes back where it came from. It settles in, and it’s content to invade the privacy of your mind each day.
I think the perception that once you hit that sought after stage of “remission” or once you finish treatment that people assume you’re good. The expectation is often that you’ll bounce back to whatever normal used to be and keep going like nothing ever happened. So in an effort to change the perspective and echo and add on to what Ms. Barbara Abernathy stated so well, here are a few things I wish I could tell you.
1) The “Chronic disease” Barbara refers to is fear and residual symptoms
It’s not unusual for folks diagnosed with cancer to come out on the “cured” side with more symptoms than they had going into treatment. Don’t for a minute think that the vices used to straight-up kill cancer aren’t going to affect the rest of you, too. I will be the first to tell you that surgery and radiation cured me, but at 9 months out I’m facing daily symptoms that may be with me forever because of those treatments I chose to have. And I would do it all over again.
Barbara talks about the 80 lb backpack she puts on each day in her article, and I envision that backpack filled to the brim with symptoms, thoughts, emotions, burdens we feel like we’re placing on others, and just the weight of knowing what we have to do mentally and physically to get through the day. Some people’s backpacks weigh more than others and some days we get to put the backpack down a few times during the day, but it goes home with us regardless.
So be gracious when some days seem harder than others and you try to remind us we’re survivors. We may have survived all the days before, but today we’re still working on it. I can be fine one day, and really need to talk out my thoughts and feelings the next day (or even hour). And it’s not all bad, but it is indeed a pilgrimage, a journey, and adventure, and a process.
2) Listen and ask questions.
We know you don’t want to. We know it’s hard to hear about what your loved one or friend is dealing with. And we know it’s hard to think about the day we might not survive anymore. We get it. But we need to talk about those things too.
Cancer has blown the doors wide open in medical research and treatment options, but in social and personal situations it still seems somewhat taboo. The conversations rarely get past, “How ya doing? Ya good?” and from our side of the fence, there’s a decent chance that we need to talk but don’t know how much you can handle or even care to hear about. And we certainly don’t want to burden you with our issues so we smile and say we’re good and talk about how blessed we are to still be alive and well despite the struggles.
We typically know our people we can talk to but sometimes it’s nice for someone to surprise us and say “How are you really feeling? Are you dealing with anything in particular right now? What’s your scariest thought you live with?” Those moments mean so much. Promise. And the answers will surely be something you don’t expect. But just as we’re learning a new life after cancer, it gives you the opportunity to peer deeper into our lives and maybe shed some light, prayer, or a simple truth with us about what we’re dealing with. Just don’t give us the “oh, but you’re a survivor” talk. Surviving is still hard!
3) Cancer makes you grow up…FAST!
This is a heavy one (if cancer isn’t heavy enough already). I will never forget the moment I realized I was, in fact, mortal after they told me Glanda had cancer in her. As silly as that sounds, the thought never crossed my mind before then and up until that point I was living life with no expectation of death, harm, disease, health concerns, etc. Nothing. I was fat, dumb, and happy for lack of a better saying. But when I started processing what it meant that my body had produced cancer cells, all I could focus on for a while was that I was going to die and it very well could be from cancer. Reality hadn’t changed from the moment before. Not to be too morbid, but dying was always a possibility, but it was never one I ever seriously considered. I was always going to (and probably still will) live until I’m old and wrinkly with my grandkiddos running circles around me.
Cancer matured me. It made me think about reality in a different and uncomfortable way, but let me tell you, I enjoy the simple, dumb stuff so much more these days. I have no shame in acting ridiculous in public, dancing when the groove hits me, singing out of tune, sharing what makes me happy, writing whats on my heart, and loving my people hard as heck even when it’s annoying. Don’t care. Because life is temporary folks, and this is the only one I’ve got.
So don’t shame people who have walked this journey for being bold. Don’t be embarrassed by my shenanigans (unless they’re offensive, and then please tell me). But join in sometime. Share in the crazy. Let loose a little. It’s actually kind of fun. You only live once. Yeah, I said it.
Cancer is truly just one of those things that you don’t understand unless you’ve walked it yourself and even then, each person has a different experience. But I so want to bridge the gap and start to eliminate the social awkwardness that seemingly surrounds us “survivors” as we’re named. I cant help but believe that it would help us live and not just survive our survivorship.
Preparing for Radiation Treatment
Starting radiation therapy is certainly intimidating. There are a lot of unknowns, a lot of fears, and a lot of what ifs that come up, but with the a healthy understanding about what to expect, many of those fears can be eased and your journey through radiation might be slightly better.
I’m not sure there’s anyone that goes into day one (or even consultation) thinking that the journey won’t change things.
Things will inevitably change.
Life has already changed tremendously with diagnosis, but changes will also come as you prepare for treatment, begin treatment, and as you power through each and every radiation appointment. These don’t all have to be negative changes though.
While it’s hard to pick out a multitude of positive changes that take place (because cancer just isn’t fun), I’ve picked out 5 things that absolutely, without a doubt carried me through with far more success than I might have had otherwise.
Drink plenty of water
Hydration is important always. Our bodies are made up of mostly water and they’re also good at telling us when we haven’t had enough water, which is helpful if we listen.
As radiation passes through your skin each day, your skin will begin dry out, get irritated, and likely become very uncomfortable. While moisturizing the surface is crucial (which we’ll get to next), moisturizing the inside is JUST as important. Your body needs the lubrication to continue to function at the highest level it can, so drink all the clear liquids you can. The cool water will probably feel good going down anyway!
Stock up on protein
Did you know that protein is the nutrient that rebuilds the cells in your body? Radiation’s sole purpose is to destroy cells, specifically the bad ones, but it will inevitably destroy some of the good ones too as it makes its way to the tumor location. Since this is the case, you’ll want to ingest foods high in protein throughout treatment so that your body has a little extra help with rebuilding healthy cells along the way.
For head and neck patients (like me) you might find that eating is much harder than usual, and it will be a mental struggle as well as a physical struggle. Things won’t taste right, your mouth will burn, and the taste in your mouth in general can be unappetizing. You won’t want to eat, but it’s so important to push through and make yourself continue to swallow. Remember, the pain is often temporary, but losing the ability to swallow is less temporary (in most cases).
So if eating will be difficult and unappealing, where do you even start with nourishing your body? I had a particularly rough time with losing my taste and eventually the sores and irritation in my mouth, but I survived on scrambled eggs, high-protein spaghetti noodles, and Carnation Instant Breakfast. These are the main food items I found that didn’t burn my tongue, didn’t have overwhelming flavors, and still provided the nutrients my body needed to make it through. I also ate a lot of tomato soup which burned like fire, but it tasted the most like food so I ate it on repeat!
Really, whatever you can find that gives you calories and protein is perfect! Stuff it in and swallow it down. You’ll be thankful later on.
Get plenty of rest
With radiation, you run out of steam FAST, so if I could do it again I would sit my rear on the couch and take a zillion naps the week before I started treatment. This was the first side effect I noticed and it was one of the last to subside too.
I also chose to work every day throughout my treatment which I 100% think helped my mental status. Having something to do served as a nice distraction for me but I was a total sloth while I was there. Keep in mind that treatment and work were one in the same for me so don’t feel bad if you’re not up to working, but outside of work…sleep, sleep, sleep. Then nap, and repeat.
Towards the end when my skin was uncomfortable, I had a harder time sleeping through the whole night and I would wake up hungry because I wasn’t getting my normal caloric intake that I was used to. So the extra sleep I afforded myself during the day was so valuable.
Moisturize, moisturize, moisturize
If you’ve followed along with any of my blogs you know I harp on this one quite a bit. But keeping your skin soft and supple leading up to radiation, throughout radiation, and after radiation is crucial to your healing and the wear and tear your skin will experience.
The greasier the better is the rule and if you didn’t have to go through chemo and your hair is long enough to stick to your neck, prepare to get well-acquainted with your hair in a ponytail and daily washes.
Preparing your skin ahead of time will set you ahead with your routine once radiation begins and you start experiencing the expected skin toxicity. It will feel like (and kind of look like) a sunburn but creams, ointments, and lotions should be the goo of choice rather than aloe or gels that dry and get sticky. I promise, dry and sticky will not be pleasant in this scenario. So lube up and get used to feeling goopy in that area for a little while. Healing takes time.
Stay as active as you can
This one seems somewhat contradictory to that part about making sure you get enough rest, but there is certainly a balance. You want to make sure you are keeping yourself active enough to maintain muscle strength and healthy body function, but you also don’t want to push yourself to where you don’t feel like doing anything. Consistency is key and will also be important throughout treatment as well, even if you have to alter what that means a bit during treatment. The main goal here is to do what you feel like doing and do what you enjoy!
Onward and upward, friends!
Glanda’s 1 Year Goneda
The week inevitably came with a wide range of emotions leading up to my surgery anniversary, July 6, 2018…exactly 1 year since the day we officially said goodbye to Glanda.
I’ve spent some time reflecting and parsing through the defining moments that got us here, and to be honest I’m still trying to make sense of most of it. But I’ve also come around to the fact that it’s not for me to understand.
I vividly remember that day.
I woke up and took a shower right away like I always do. I remember being extra careful in the shower not to swallow any of the water because I was NPO after midnight and there was nothing that was going to prevent me from getting that dumb tumor out. I remember riding with K.T. on the way there discussing the potential outcomes and praying together that the Lord would carry us through every second of the surgery and recovery journey. (We know now why the Lord put that on our hearts.)
I remember bouncing around and joking with nearly everyone I came in contact with as I carried my bag packed full of all the things I thought might comfort me for my one night stay in hotel UAB. I remember my parents arriving all flustered and nervous for their baby girl to go into surgery for the first time ever (especially Mom since just two years prior we were sending her back to remove a breast tumor).
I remember telling Dr. Carroll to send a chunk of my tumor to STRATA Oncology (because I knew they were always looking for tissue for that trial) but I forgot that they only send off malignant tissue. Not sure whether to call that foreshadowing or a slip of the tongue, but my tumor tissue ended up at STRATA nonetheless. And finally, I remember the sweetest kisses and “I love yous” from my husband, mom and dad, and my brother who was just arriving as my gurney started its adventure to the OR.
I remember waking up in recovery with my right arm all cramped up because I guess I was laying on it for those 4hrs they were taking my ear off and putting it back on. And I remember staring into Dr. Carroll’s eyes as he so compassionately told me they suspected malignancy and then stood there patiently while I fired off a whole magazine of machine gun questions.
And lastly I remember K.T. crawling up beside me into my hospital and telling me that they called out from the OR to my family in the waiting room to let them know my tumor wasn’t what they originally thought. The heartbreak set in again at that point, but that moment will always be really special to me.
Reliving that day is hard. I mostly think about those 4 hrs that my family had to sit there and wait knowing Glanda was most likely cancerous without being able to tell me or talk to me. I often ask K.T. to tell me about that period of time that I missed and he always obliges no matter how often I ask. And I always silently cry a little when he gets to the part about how he made sure he memorized every word of what Dr. Carroll said on the phone so he could repeat it back to my family verbatim. And then I cry a little more when he talks about how he and his mom sat off to the side for a while as he got so emotional that he couldn’t speak, simply because he knew how disappointed I would be when I got the news too. And then he tells me how they all somberly waited outside of my hotel room for the night and they could hear me high as a kite in there making jokes left and right while the nursing staff made sure I was comfortable… and they all shrugged and said, “that’s our Valerie.” But I didn’t know yet.
This morning we sat on our swing together as we decompressed a little from a celebratory weekend (see below). It didn’t take long for me to start reflecting all the memories again and where we were just 1 year ago. All I could think of was my miracle that took place on that operating table under the hands of Dr. Carroll and the blessing of the absolute jewel of a man I married. Both have given me strength beyond comprehension, wisdom well beyond understanding, and comfort I will never be able to fully explain. And that, my friends, is what has carried me through.
It’s not always the hope and certainty of being a survivor or the clinical facts of my tumor. It’s not some crazy courage or braveness that has kept and still keeps me marching forward every single day. It’s far simpler that that…it’s Jesus. And it’s K.T.
For 365 straight days, I’ve thought about cancer. Whether it’s how cancer has changed year 28 & 29 in every way possible, whether it’s the thought that cancer could in fact grow in my body again (as it could in literally anyone else’s), or whether it’s thoughts of our patients and how I can help them someway, somehow with the knowledge I have now as a patient and as an employee, cancer has been on my mind.
While I will certainly not try and convince you that this has been the best year of my life, I will just tell you that it has been the best year. I will also tell you that it’s been the worst year, the hardest year, the longest year, the shortest year, the most painful year, the most emotional year, and the most overwhelming year of my life. It’s been every kind of year, in no particular order.
As as this year comes to a close, I still have a long way to go and a lot of things I want to accomplish including being a mommy (and I swear I never felt that strongly about that until the thought of not getting to be one because of Glanda crossed my mind.) But until October 20th, I’m not medically considered 1 year “cancer-free” and not allowed to make little Powells. I’m just cheating and celebrating this milestone too because I can and since Glanda came out with clear margins and radiation was precautionary due to possible (not confirmed) perineurial invasion. However I do feel like a chapter is closing, and that’s bittersweet for me oddly enough.
I’m no longer living through my first year as a cancer survivor, and I’m no longer telling about days that haven’t already happened with cancer in them. This year already feels different, and I’m settling into the normalcy of it. And just as we accepted the changes last year as we faced new earthly truths, we will accept the truths that come in year 2 and count our eternal blessings just the same.
But before we let year 1 go, you know we had to throw Goneda a little 1st year gone
party. K.T. did all the coordinating, the preparation, the cooking, and even the clean up. There were cookie cake surprises, watermelon surprises, and we were surrounded by friends and family that have loved on us, encouraged us, fed us, prayed for us, checked on us, and helped us in whatever way we asked this last year. And let me tell you, that means the world to us. The world!
The New Normal
My goodness. Looking back at all the life we’ve truly lived since our trip to Hope Flower Farm is absolutely incredible. That trip was truly life changing for me. It beautifully wrecked every part of me and pieced me back together at the same time. And for the first time since surgery, I’ve finally experienced the normalcy I’ve longed for in so many desperate moments.
While this month hasn’t been without fear and the usual scanning and testing, the Lord has shown me peace for the moment and granted me continued healthy checkups.
Just in 2018 alone I’ve seen my general practitioner, a neurologist, a neurologist-ophthalmologist, a pulmonologist and I’ve had some sort of scan nearly every month in relation to these appointments on top of my normal follow ups scheduled every 2 months with my radiation oncologist and my surgeon.
I’m perfectly healthy. No cancer, no big issues, and I’m living happily with only small residual symptoms, seemingly from my treatments, that may or may not resolve. But that doesn’t mean every day feels like sunshine and blue skies.
I want to crawl in a hole of utter embarrassment when I think back to how many times I’ve actually thought I had cancer again and how many silly “symptoms” tricked me into thinking that was the case…which gives reason to all those recent appointments I listed off above. It’s insane, and I’ve reached a point where I’m comfortable admitting that. I completely lost my mind somedays.
Life after cancer is simply hard to describe. It’s different. It doesn’t feel like it used to. It’s like going to war and coming home thinking that there’s still a chance you may step on a claymore. It’s scary when it’s supposed to feel somewhat safe, and it’s unexpected on all accounts. No one sees cancer coming, much like the soldier that doesn’t see the land mine buried beneath the soil…until it hits them…HARD!
At the core of the issue though is my thoughts, as obvious as that may sound. The battlefield of the mind is far more dangerous territory than the battlefield of a often deteriorating physical body. And as so many have told me, attitude is everything. The devil is just relentless in finding ways to distract me from this normalcy I’ve found lately.
So in my newly found normalcy, I’ve worked extra hard on squashing scary thoughts immediately and not entertaining the scenarios that I could very well play into. I’ve learned how to handle the little whispers in my conscience and stay on track more effectively.
I have to stay in the moment or I’m sunk. I have to replace the lies with truths that I’ve found in the Lord’s word. And I have to remind myself that where I’ve been is not always totally indicative of where I’m going. That was a season and seasons change.
Glanda (or Goneda) has big plans coming up soon and it’s going to take continued normalcy and a joyful attitude to get there!
So here’s to praying myself silly and believing that normal is my new normal.
Onward and upward!
Along Comes Hope Flower Farm
Back in 2016, I worked for a floral magazine here in Birmingham as the digital media specialist. That October they afforded me a trip up to Waterford, VA to cover the very first ever Flowerstock hosted by Holly Chapple at Hope Flower Farm and I could have never imagined the effect it would have on me when I landed in D.C simply to do a job.
I spent most of the next two days, breathing in the entire experience of the event. I studied the ways the leaves turned over when the wind whistled by the branches. I watched the sun settle into the horizon each evening and marveled at how the afternoon shadows somehow made the petals even more alluring all gathered together. And I watched how gently everyone treated one another and how humble and respectful they were as they soaked up the knowledge on display by their floral design peers. It was simply heavenly.
I often reflect on those quiet, early mornings and warm afternoons I enjoyed on the farm and the peace it instilled in me. And to be quite honest, I held on to those memories and that peace tightly knowing that I would most likely never have the opportunity to step back on Hope Flower Farm ever again.
But in November of 2017 (after changing jobs out of the floral industry, a cancer diagnosis, radiation treatment, and so many moments filled with anything and everything except peace), Holly contacts me and asked me to return to Hope. It was an immediate yes, before I even knew what I would be going for.
So May 1, 2018, K.T. and I landed in Baltimore, MD and would return to the farm for me to walk as a cancer survivor model in the Flora and Fauna Fashion show that Holly was hosting at Hope as part of a Chapel Designers workshop. The fashion show would be open to the public and proceeds would benefit pediatric cancer through a sweet organization called Along Comes Hope run by Jenny Weineke, another survivor walking in the show. If cancer is what it took for me to walk on that property again and see my flower friends, then praise the Lord for cancer!
In the 4 days prior to the event, many of the absolute best in the floral industry including Gregor Lersch, Francoise Weeks, Hitomi Gilliam, Susan Mcleary, Alison Ellis and Holly Chapple taught mechanics, design tips, and other mesmerizing techniques that could further the student designers’ floral businesses back home and also inspire the creation of pieces for the fashion show. Each piece the survivor models would don down the runway would be wholly created by these student designers as well as the teachers and be specifically designed for each survivor.
We got into town on Tuesday. We decided to go on and stop by the farm to say hi to those I knew, and also so I could show K.T. around the farm knowing the next day would be a little busier. I wanted to make sure I pointed out all the special details that I had noticed on my first trip in hopes that he, too, would fall in love with the land.
The next morning, we arrived bright and early for hair and makeup alongside the other survivors and took turns telling our healing stories amongst each other as we got ready and dressed ourselves in custom made dresses by sisters Mary Hancock and Shannon Hart. Finally, we were decorated with the most exquisite floral designs. Each survivor would have a quick photoshoot with photographer, Sarah Collier of Fine Art Wedding Photography, and the fashion show was set to begin at noon. (The event was also covered by the Washington Post, and I’d be lying if I said I wasn’t super pumped to see that story.)
The anticipation of waiting for my first walk was likely enough to wilt the flowers off my head. I honestly hadn’t really taken the time to think about what this experience would feel like before that moment, and from my often unpredictable emotions through treatment there was no telling how this would go either.
I took my first walk slowly down the decorated dairy barn runway as Holly told the attendees the story of how we met and how I ended up back at Hope. My K.T. was looking on proudly next to Holly, and for a moment I flashed back to our wedding when I walked down the aisle towards him and promised him forever. I’ve apologized to him so many days since diagnosis last July because I know this isn’t the forever we envisioned, yet he always assures me that it’s our forever and the forever he always wants to live. Sure enough, the emotions began to build and as I stepped out of the dairy barn, tears made mud on the dry dirt.
It was as if the entire journey hit me all at once. All the pain, the fear, the scary days, the unknowns, and my feeble attempts at processing I had cancer circulated through my veins…but then so did hope. I was walking as a survivor…not a patient (like some of the others were) and even that felt heavy right then. It took me several minutes and hugs from my precious husband and friends before the tears dried up, but I’m certain that moment was and will continue to be pivotal in my continued healing.
It’s truly a weird thing to be celebrated for cancer. It’s happy, and it’s sad. It’s exciting, and it’s scary. It forces you to remember where you’ve been and how much you’ve been through, and with cancer it undoubtedly all happens within a short amount of time. It forces you to choke back down the emotions you’ve worked so hard to swallow, and it forces you to think about the possibility (no matter how slight) of ever having to walk that path ever again.
However, a celebration of cancer is a celebration of going through literal hell and making it out alive. It’s a celebration of the amazing medical brilliance and technology of the world. And it’s a celebration of the healing and mercy of an amazing God.
I took my 2nd, 3rd, 4th, and 5th walks down the runway far less emotionally and spent a few minutes in the flower cooler between each to help keep the anxiety at bay. While the tears may have ceased, I was still turning so many thoughts over in my head about it all.
By the end of the event, I was spent. My K.T. had pulled our car up near the barn and packed up my stuff while we finished up group pictures. I said my goodbyes and gushed about how thankful I was to have had the opportunity to return to Hope and participate in such a special event. Not sure I spoke the whole way back to Frederick, MD where we were staying.
It took a sandwich, a long nap, and some mindless tv watching for me to become verbal again. Like I said, I just never anticipated what all this would be like, but after two weeks of reflection, I’ve concluded this.
It. Was. Perfect.
And exactly what I needed.
No one knows better than K.T. that I have been a total wreck the last few months. I have had “health issues” one after another since December and more moments of anger towards the Lord and simply not being able to make sense of anything than I’m willing to admit. I had lost hope in ever feeling like myself again, and it had become a rare occasion that I felt beautiful and worthy of the effusive love my husband never fails to give me. I blamed myself for trapping him in this life of taking care of me, wiping my tears, and constantly having to listen to to me try to piece together my life and feelings into some kind of recognizable picture.
But only the Lord knew that all that brokenness I’ve experienced would lead me back to Him, back to Hope, and back to my warrior friends and the place that gave me hope and peace in a different hard time. Only the Lord knew that I needed that time away with K.T. to celebrate a battle we had fought together to remind me that this is the perfect life for us and that he is and always has been the man I knew the Lord led me to in 2012. And only the Lord knew that the people I would meet at this event would help stand me back up on my feet again and push me forward in healing, in hope, and in assurance that the Lord has plans to prosper me and give me hope for a future.
How beautifully mesmerizing is the work of the Lord? How if we put even a tiny bit of faith in His plan, that we will inevitably find ourselves face-to-face with Him and His promises that will soon be fulfilled.
As I said, I know our trip to Hope will continue to bless us as we think back on the little intricacies and reflect. And I know the Lord will continue to work on my little heart through this.
Cancer is hard, and it truly takes the support of a village. Thankful for mine, and forever thankful for Holly Chapple.
Now, please enjoy these travel outtakes 🙂
Halfway to (more) Freedom
Today marks 6 whole months since my final radiation treatment, and I woke up feeling all kinds of things.
I always imagined that each and every milestone would bring indescribable joy and thankfulness for my healing and for life and just for the crazy blessings that have been bestowed on us during this time (because they are BIG), but Lord, I didn’t expect to feel a little sad and empty when I rolled off the bed to start my day. I never expected to feel like I hadn’t made it as far as I wanted to by this point.
Please hear my heart when I say that I am not minimizing the blessing of my healing whatsoever. I’m immensely grateful. And I feel haunting guilt knowing that so many other survivors and current patients face far bigger giants and symptoms than my menial mishaps. But working in the midst of cancer care every day gives you a front row, VIP view of how cancer affects your life in some way for the rest of your life and that makes it tempting to get sucked into the “what ifs”. There are so many success stories around here and there are also stories that will scare the pants and the shirt off you. There are moments that are rewarding and moments that are terrifying. It’s encouraging and it’s exhausting. But it’s worth it to me…because I feel like it’s my purpose to share my journey with others and use my unique patient/employee experience to help patients travel their paths a little easier.
Post-treatment life is just simply not what I expected. I’ve mistakenly thought of it like a long, drawn-out injury or infection, and assumed that as time went on things would heal and normal would be restored. But 6 months out, I have a right arm that can feel hot, cold, and deep sensation but not much else. I have left fingertips that are trying to jump on board with the right arm, and I have some stress-induced symptoms that have gripped my thoughts far too tightly.
However, you can’t even tell I had surgery or radiation by looking at my skin, I have taste buds again, I’ve gained the weight back I lost, my hair is growing back, and my energy has returned for the most part. And that’s a BIG deal no matter what.
So 6 months out, we’re celebrating! Throwing confetti around for healing, eating all the foods, going on a walk, and rejoicing in our Lord that He is good. He is always good!
Post-Radiation Life is…
Fill in the blank and that probably describes what it’s like on this side of things. It’s scary, it’s different, it’s confusing, it’s an adjustment, it’s a new normal, it’s freeing, and it’s a daily effort to keep my mind and heart focused on things that are good and worthy of my attention.
I’ve realized recently that I’ve been so focused on my poetry (as I prepare to put together a collection this summer in a real life bound book with my name on it) that I have not written hardly enough about what life is like after treatment. Much like actual radiation treatment, you get a front seat to your body doing and experiencing things that you may never had witnessed if cancer had never walked into your life. For me, its numbness in my arm due to inflammation in between my C1 and C2 vertebrae (probably), but I also acknowledge that there are post-radiation changes that are much worse and more severe than my measly numb arm (that still works fine obviously).
None of those experiences are to be minimized, but I’ve learned a few things that I wanted to share with you on how I’ve coped:
1) Where the mind goes the man follows
I can’t even begin to communicate how terribly important I’ve found this to be. December (2 months post treatment) was a particularly hard month for me and looking back my thought life was complete trash. I let fear and the “what if” game totally rule me and cripple me to the point that functioning like a normal human in society was hard some days. But I finally got myself together and snapped out of it.
The Lord is intentional about telling his people to hold every thought captive. So when one of those scary thoughts popped into my mind, I would stop it, squash it, and replace it with truth. Picture your thoughts being trapped in a net or a bubble and releasing it into an open field far, far away. That’s how that goes for me. And that field is way too far away for those thought bubbles to ever make their way back to me, so bye. Replacing the nasty thought with something good, life-giving, and encouraging changes my perspective and at some point I start noticing fewer and fewer nasty thoughts showing up. And that’s a pretty sweet realization when it happens.
2) Stay active
Things that move, stay moving. There is some scientific principle about that somewhere, but the point is to keep your joints and muscles in good working order. Patients that have gone through some sort of surgery or treatment more than likely lost some strength and muscle tone during the process (unless you’re some kind of superhuman) but it’s important to keep exercising in some capacity. I lost 10 pounds during treatment and even 6 months post radiation, I still don’t have my strength back and I still have chicken legs but I’m working on it!
So I go for walks, I do small strength-building exercises or stretches a few times a week, and eventually I’ll get back to dancing. But for now, I’ve learned to do something even if it’s small. Muscles that sit tend to atrophy and bodies that stay stagnant tend to lose motivation which actually nods at my previous point…thoughts. You (and only you) have control over those.
3) Find normalcy again
I know in some cases this sounds like a joke. I like to call it my new normal, which is the closest thing to what I considered normal before. Will it ever be exactly the same? Nope. But regardless of a cancer diagnosis, life was never (and should never) be the same as it was years, months, or days before. That’s how we learn and grow and evolve as people and in relationships. Change is good, but normal feels good.
I’ve slowly modified ways to do the things I used to. K.T. and I intentionally talk about the things we used to, we try to dream as we used to, and we are striving towards our goals with persistence and maybe even moreso than before.
When they first told me it was cancer, I couldn’t see further than the end of my nose into the future. Cancer equaled inevitable death for me. But spoiler, no one’s getting out of here alive so I’ve slowly, very slowly, come back to thinking about family, babies, long-term career goals, retirement, etc. Honestly, it’s more dangerous to get in a car and drive every day than it is to live with cancer on your medical record…and yes I recognize many factors play into that. Just go with it for now.
4) Don’t be afraid to tell people how it really is/was
A cancer diagnosis puts you in a unique group. It makes you see life differently and feel things to depths of the soul that I didn’t know existed at an earlier time in my life. Cancer also has given me purpose. I truly believe that cancer patients are part of a whole and potentially part of a solution. I assume that each person involved in my cancer care has learned something about cancer that will collectively bring the world closer to a cure…and that is absolutely fascinating to me.
I also feel great responsibility to share my experiences with others and especially other survivors. No one can know if I don’t tell them and I’ve found that there are very few people involved in our care that have experienced cancer themselves so sharing my experience with them is valuable as well. They may have experienced it alongside a loved one, but it’s different.
So I’ve vowed to myself to be honest and completely raw. And if you’ve read any of the posts from my 6 weeks of treatment or seen any of the pictures, you know I didn’t hold anything back. And considering writing was part of my emotional therapy, it doesn’t help anyone to sugarcoat things.
5) Remembering I’m NOT defined by my cancer
I recently wrote a poem about this very thing. I often feel like people see me as damaged now or as that girl that had cancer, or there’s just that awkward interaction where other people don’t know if they should say something or if I should say something just to cut the tension. I even apologize to my husband all the time for us going through what we have and that he married a cancer patient unknowingly (although Glanda was at our wedding too), so maybe I’ve done a terrible job with this one so far. But really and truly I know I’m still me and at the end of the day all I want is to be seen and enjoyed for who I am, my hilarious jokes/sarcasm, and for people to understand that I’m not going anywhere.
Cancer is not my name and it’s not what makes up my life. Yes, it’s a detail of my life. I do have post radiation and post surgical changes that nag at me. I have scars (and hair loss) that I face in the mirror every day that create insecurity, but those are blessings! Those are my badges of honor, my symbols of my survivorship, and reminders that I am way better off than I was with a tumor sticking out of my neck last June no matter what.
So while I still struggle at times, life is still sweet and I’m still breathing. And for now that’s enough.
Onward and upward!
Well…It’s Not Cancer
I’ve sat down in front of my computer a whole handful of times lately to write an update, a new poem, something…but haven’t quite found the words until now.
2018 has been full of adventure already and I truly feel more normal than I have since surgery last July, but on January 10th I started noticing a bit of numbness ad tingling in my right thumb. Since I’ve had my share of chiropractic visits over the last 10 years or so and my neck has been known to get out of alignment and cause headaches, it didn’t worry me too much. But then over the next few weeks it started to spread…it spread to my other fingers, to my palm, my arm, my shoulder, my tummy, and my leg. And in that super scary moment that I woke up and realized nearly my entire right side didn’t feel right, I decided it might be time to tell my doctors.
Needless to say the last few month have been filled with doctor’s appointments. I’ve met with my PCP, radiation oncologist, a neuro oncologist, and a neurologist. I’ve had 3 massages in hopes of relief, given 10 vials of blood for labs, had a cervical spine MRI, nerve conduction testing, EMG testing (which is basically needles being stabbed deep into your muscles and then being asked to move those muscles to make sure they work), and in the next few weeks I’ll have a brain MRI, an eye exam, and 2 more appointments. And from all that, we still don’t really have a ton of answers.
But one thing we do know is…it’s not cancer. And that’s more than enough to celebrate.
The cervical spine MRI did however show that I have a 9mm spot of inflammation in my spinal cord between C1 and C2 that is slightly more to the right, which would explain my right side/arm symptoms. But we’re not 100% sure what the cause is.
It could very well be a late effect from radiation, but those type of neurological issues don’t normally show up until 6 months or so post treatment (I’m about 4 months out) and my spine got a very safe dose of radiation (30gy). Let’s be real though, NOTHING about this entire situation has been normal.
The other things being considered are things like MS and any kind of autoimmune disorder. That’s mainly why I’ll have another brain MRI (even though I just had a super clean one 12/27), why I’ll have a neuro eye exam, and why they’ve drawn so much blood. These tests give them some insight on anything else that could be going on that checks out for either of these diseases. I’m personally hoping and praying it’s radiation related which will go away on its own.
The best news in all of this is that no one is panicking. I still have my strength and I can still feel things like hot, cold, pressure, etc. so this honestly hasn’t caused me more than a bit of anxiety, annoyance, and the occasional drop of something from my right hand. Typing is weird, writing with a pen is questionable, and I’ve gotten really good at eating and putting on makeup with my left hand.
But while all of this as been so very frustrating, I’ve seen God’s grace and mercy more and more. I’ve seen even more first hand what a good, good father He is and how He cares for His children in so many different ways. And my goodness the peace that comes with that. It’s so easy to think about all I’ve already gone though and be angry that something else has come up, but I’m healed and I have a story that no one else but me gets to tell and this trial will only add to that. What a gift!
Have I been angry about this the last two months? Angry to tears and miserable because I felt like the devil was trying to steal the thing I love to do most…write. But no matter how many times I have to backspace or how long it takes me, I’m going to use BOTH of the hands God gave me to tell the world my story.
Have I had my share of words with God? I have more times than not, and then I pulled a David and ended up praising Him by the end because this isn’t cancer and He’s given me that assurance knowing how desperately I needed it. If I’m truly honest, I was most nervous that this situation was going to be something terrible and hold us back from becoming parents someday, but Lord willing there will be baby Powells someday. Rest assured.
So what’s next? March will be the brain MRI, PCP follow up, and neuro oncologist followup (don’t let the oncologist part fool you. She’s just used to treating post-treatment patients and she came highly recommended to us). April will be back to normal programming and include my second set of scans (out of 4 for the year) and a checkup with my radiation oncologist. Then I will hopefully have May off and then June is my checkup with my ENT. (Checkups are every 2 months for this year and swap between my radiation oncologist and my ENT).
Lastly, we will humbly and thankfully accept your prayers through this year (and the next) as we go through all these appointments, scans, and continue on this emotional ride. It’s been hard but we’ve grown more, loved better, and lived harder and that matters a lot to us.
Onward and upward! It’s going to be a beautiful year!
Time to Celebrate
Happy 6 months to meeeee! It’s been 6 months since I went in for surgery to remove a benign salivary gland tumor and received path results just 6 days later that it was cancer they took out.
Since then I’ve endured surgery recovery, 4 billion appointments, and 6 full weeks of daily radiation to my head and neck…alllll to make it to this point. The point where I can look back and be completely overwhelmed by the way that the Lord has healed me, provided for me, and carried me and my K.T. through this journey together. There’s simply no other explanation.
It has truly been the longest and shortest 6 months of my life. And it has admittedly taken me quite a long time to come to terms with why I’ve gone through what I have and to find some sort of peace in the fact that I’m 100% healed from Glanda’s wrath. Because for a while I didn’t believe that I was actually going to be ok.
But the Lord has rescued me again and has gradually impressed on my heart and mind that I was going to be ok and that the bible does, in fact, say over 200 times “do not fear” for good reason.
So, as I sit in the desk chair that has cradled me nearly every. single. day. of this journey, I can’t help but reflect on the weight of God’s sovereignty in it’s entirety. It is nothing short of a miracle what has happened: the steps that got me here, the people I’ve met along the way, and the way my body responded so well to treatment. Not to mention I get to sit in the department that treated me as an employee and have the opportunity to someday bless other patients with documentation from a patient perspective on what to expect. Thank you, Jesus!
Onward and upward, friends! Time to conquer the world!
Gone, Glanda, Gone 