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!
5 Radiation Misconceptions
1) Radiation skin damage is just a sunburn
While radiation skin toxicity looks like a sunburn and can often feel like a sunburn, the skin itself is not actually burned as if from a heat source. Radiation treatment is used to destroy the bad cells in our bodies, but in the process some of our good cells also get killed off. Since most of the time, radiation is targeted to the inside of the body and has to pass through the skin to reach the target area, the skin gets compromised to an extent.
The more times and the higher the dose of radiation passes through the skin the more good healthy skin cells die, leaving the burn-like effect. What you saw in most of my pictures was actually raw skin rather than burned skin. The skin starts to slough off after a while leaving new, very tender layers of fresh skin exposed to the elements. This new skin also dries out very quickly since it is normally covered in a thicker barrier that is used to outside exposure so its very important to keep it moisturized until the new skin has time to grow.
It’s also important to point out that skin toxicity from radiation doesn’t emit heat and can’t simply be healed or helped in the way sunburns can. It’s more of a sit, wait, stay moisturized, and protect it game. It’s fragile, painful, and it’s nearly inevitable, but it’s also manageable.
2) Radiation is the easier option to chemo
It’s probably not fair for me to say that and call it a fact since I didn’t go through chemo, but so many people have minimized radiation as a cancer treatment in comparison to chemotherapy or others. The fact is that radiation comes with its own set of side effects and misery that take physical and emotional strength to endure.
I am not by any means minimizing chemo treatment and the toll it takes on your body and mind as you get a front row seat to your hair falling out among other things, but more so that ANY kind of cancer diagnosis and/or treatment is hard. It’s hard during and it’s hard afterwards. The two are just very different.
3) Healing begins as soon as treatment ends
Radiation is cumulative. It builds up in your system, so while you’re treatments may have ceased, the radiation itself is still going to be taking effect in your body for a bit longer. You aren’t considered radioactive so you are free to move about as normal and hold babies, however you typically won’t start seeing true healing starting to take place for around a week or two after treatment.
4) Radiation is simply a physical journey
It seems that since radiation doesn’t involve anything intravenous, oral, or anything else that is put directly into your body, that it would be more of a physical journey, but in my experience (as you know if any of you have been following along) this journey is far more than just physical. It’s the emotional and spiritual that have seemed to take me down on more occasions than what has held me back physically.
Of course, radiation is hard on your body physically. It better be if it’s going to kill those feisty little cancer cells, but I wouldn’t mind if they worked on killing off some of the doubt and fear that comes with it too.
5) Once it’s over…it’s over
I’m not referring to treatment here. Of course, when treatment is over then treatment is over. I’m talking about the fear, the worry, and the overall anxiety that tends to creep in after you undergo cancer treatment. I remember when I first began this journey after my diagnosis and people told me more than anything that cancer has a way of affecting you long after it’s gone. And I didn’t understand what they meant. But boy, do I understand now more than ever.
Unfortunately until cancer has a cure, the journey doesn’t end after diagnosis and treatment. However, so much advancement has been made in medicine and cancer research in the last 5-10 years that survival rates as well as funding is at an all time high. More and more patients are seeing longer survival rates than our families did in the past, and cancer is no longer an inevitable death sentence every time. Sadly it is sometimes, but I have no doubt that even those patients and families will see the same advancements in the years to come. The good news is there are brilliant, brilliant minds working on our health. And while they take care of the physical, it’s up to us to care for and nurture the mental, emotional, and spiritual for the most part.
Work hard to find your happy, surround yourself with the people you love and find interesting, be diligent about squashing negative thoughts immediately, and take one day at a time. That’s not a fix all…but I would sure argue that it’s a darn good start.
Auld Lang Syne
I fail to find the right words for this year so often (if there is such a thing) but here I am again writing stuff and throwing it out into the public like it’s different from all the stuff i’ve already said. The timing of little blessings like happening upon the words above on the last day of a hard year remind me of the Lord’s sovereignty and that on my darkest days, He is the best comforter, the God of peace, protection, promise, and perfection. And yesterday is not who I am. I get a fresh start and a clean slate every, single day because of His grace and mercy.
So as we officially send 2017 off and welcome 2018 today, I have a few things on my heart that I want to share with you:
Cling to faith
Since I rededicated my life to the Lord around this time in 2012, I can’t say I’ve had a bigger faith struggle than the last 6 months have been. I’ve tried to rationalize with things that are very clear in scripture, and I’ve let the devil get a hold of my thoughts and wrestle me to the ground more times than I can count. I’ve questioned God’s protection over my life and His purpose I’m certain He has for me. I’ve let fear totally overwhelm and own my days to where I’m paralyzed to carry out my purpose if I could even see past the fog to find my purpose that day.
It’s been hard. But I know I let it get to these circumstances at times instead of standing firm in scripture, dressing myself for (spiritual) battle daily, and reminding myself of the truth constantly. My heart loves the Lord just as much as always and I truly feel like He will use the tiny of bit of cancer that grew in my body to stitch me closer to Him this year, but He’s already taken that step. It’s up to me now. And Lord knows I need it.
The point is faith is the only thing that saves us. And it saves us daily if we let it. No matter what, start each day seeking the Lord’s face, the truth in His word, and the good He promises to his children.
Look for the good
Find the good in a cancer journey? Yep. 100%. I can come up with hundreds of things, people, places, and experiences cancer has afforded me that I know I wouldn’t have experienced others as well as people I met and places I went well before diagnosis that have folded in perfectly into this journey. And I know there are more to come. It’s more than obvious that the Lord has had His hand in this and has been preparing me all along. That’s where hope lies. Between the dr’s appointments, the scans, the memories, and the occasional tears, there are lives that need to be touched, stories that need to be told, and blessings that need to be given. And Lord willing, He will open my eyes to those things, point me towards those people, and show me His good in every moment.
Let the Lord change your definition of good this year also. Good isn’t what you want or what you think you need. Not even close. Good is what the Lord sees as the best for you in that moment from His sovereign perspective. Just let that seep in for a minute.
Accept change and pruning
This year is starting off much different than the last. Our plans have changed for what we hope the year will bring, our dreams are different, our people are different, and our goals are different. While I know that every year starts off differently regardless, it seems we have less constants this year than many others.
Some changes this year have been harder than others. Plans we had were forced to be rescheduled teaching us (again) that the Lord is sovereign. People were pruned from our lives, some intentionally and some unintentionally, that we know have enriched other friendships we have, including the one we have with each other. And of course the obvious changes in health have given us a run for our money.
So learn to go with the flow a bit more. Accept when things fall apart…better things are most likely coming. Shift your focus. Take a step back and gain a different perspective, and willingly take the road you thought you wouldn’t every now and then. You might be surprised the peace and happiness you’ll find.
Love Hard
Everything changed July 6th this year. There’s no denying that. And actually the real change happened when I married my K.T.. God knew I would need a helpmate for more than just every day life. He knew what we would face and that K.T. was the best to face it with me. And he has lived up to that and more. He’s lifted my chin, carried me on his back, taught me how to laugh again, and hugged me tight when my heart got overwhelmed and I couldn’t do anything but cry. When I say I couldn’t have made it without him I mean it and when I tell you he’s still helping me through each and every day post-treatment, I mean it.
There were unfortunately days that went by that I was exhausted to the point that my precious K.T. didn’t get his needs met, but the way I’ve seen him rise up as a man, a leader, a caretaker, a husband, and as my glimmering angel on earth has deepened my love to depths I didn’t know were possible.
I will spend the rest of my life loving that man as unapologetically hard as I can. And same goes for my friends and family. More hugs, more time spent together, and more sappy love notes to come. People are our purpose, yall. Make yourself a little more vulnerable and love them with all you have. It will make all the difference in the world.
So for 2018, it’s onward and upward as usual. Lots of faith, goodness, change, and love to come. Continued health, clear scans, and abundant blessings!
Happy New Year, friends!
All the Gross Things
WARNING: Gross pictures included
Many of you have heard my stories about radiation and others actually watched it happen, but what you may not have seen unless you work with me or live with me is all the disgusting things that happened to my body, in my mouth, and just in general over the course of my 6 weeks of treatment and healing up. So for fun, of course, I thought I would (over) share and tell you about some of those gross things and include some pictures of course. Here goes…
1) Nose bleeds
Around week 3, I had a nasty cold on top of being most emotional crazy mess I’ve probably ever been in my life, so that meant I was using A LOT of tissues. At some point during that time my nose starting bleeding at any and every nose blow, which created quite the situation given the circumstances. It also meant I was left with a two options: blow my nose less or stop crying so much. I’ll let you try and decide which one I ended up going with…
Thankfully the nose bleeds stopped once my cold cleared up and my emotions stopped owning me, and we no longer had to worry about me bleeding out every time I cried. Jk. It always stopped bleeding pretty quick, but that didn’t help me not freak out every time it happened. To spare you of blood, the pile of tissues (or snot balls as my father so lovingly calls them) from a meltdown gets shared instead. It. Was. Atrocious. And embarrassing.
2) Washing sheets/changing pillowcases
Each night that I went to bed from about week 4 on, I had to slather my cheek, chin, and neck with Glucan cream. At that time, my skin was just starting to turn pink which meant the radiation was starting to affect the more superficial layers of my skin. As mentioned before, the Glucan is designed to help slough off any dead skin that had formed on the surface so as you can imagine, I woke up with an interesting assortment of things on my neck (see next point). But because I couldnt cover the cream with anything, sleeping became super strategic meaning I had to try to stay on my right side or my back all night. I sleep like a 4 year old and flop all over the place and generally prefer my left side so I cant say I was particularly successful.
So to add to the journey, I woke up most mornings in a weird pile of unknown goo, Glucan, and a little bit of blood from the places that had already gotten raw enough to bleed easily. And because that’s gross, we ended up washing our sheets and changing pillowcases daily. Anyone else think changing sheets is one of the more annoying chores? Cool. Me too. Thanks, Goneda!
3) Maggot skin
So to my previous point, Glucan sitting on radiated skin for 8+ hours each night makes for mornings where your skin literally looks like it was invaded by maggots overnight. I’m not even sure I should elaborate on that one, because it’s gross enough without saying anything further, but just know that I went straight to the sink every single morning to try and verryyyyy gently remove these pretend maggots. Now, yall see why K.T. is such a good man?…he still slept in the bed with me with maggot face every night and didn’t complain once. Sick.
4) Ear leakage/crust
Well week 5 brought an ear infection and while my skin on the outside was starting to get pretty torn up, that also meant the skin inside my ear canal was experiencing some of the same kind of torment. But since my ear wasn’t getting as much exposure to fresh air to dry out like my neck and such, the weepiness from my skin falling off just kind of hung out in there for a while. So that meant when I went to sleep, my ear leaked a little. It leaked goo. Sometimes it looked like water and sometimes it had a hint of yellow or brown. Who knows what was actually going on in there. All I know is it was gross. Not to mention itchy.
5) Ear booger
If you were around me enough soon after treatment, you’ve probably heard about this little guy. Considering my entire ear crusted up inside and out and the radiation caused the skin to slough off and basically die, it’s not inconceivable that the inside of my ear would grow a friend for me to find…and because I cant leave anything alone, I did in fact find it.
One fine morning after my shower, I went poking around inside my ear with a sterilized bobby pin determined to find some relief from the dryness, itchiness, and general uncomfortableness of my ear being destroyed. (This is not where you tell me it’s dumb to shove things in my ear. I’m aware. But I do stuff like that anyway because I’m stubborn). I had been having issues with my ear leaking as mentioned above so if I suctioned my finger to my ear hole, I could get some water out on my finger every time. And man, was I tired of not being able to hear out of that side and the constant whirring noise I heard because of my ear canal being swollen to the size of a coffee straw.
So after a few failed swipes in there, I tried one more time. A twist and a slow pull and I had a bobby pin with a ooey, gooey, slimy white skin booger looking thing on the end of it. I could finally hear. Praise the Lord.
6) Rope saliva
This is one I didn’t notice as much since I was constantly chugging water and trying to get the trash taste out of my mouth or determine what type of food I was trying to chew, but basically your saliva turns to syrup and it makes strings from your tongue to the top of your mouth anytime you open it. Think melted cheese….sticky, stringy, and hard to swallow. Thankfully this one subsided quite quickly since radiation ended, but my saliva is still thicker than I would like it to be. Small victories.
7) Tongue ulcers
And finally, my little tongue. Reminiscent of the middle school days of braces, the side of my tongue that the radiation was going through shredded itself into a million tiny ulcers that at some point warped into one giant ulcer. Most of them were along the side and back towards my molars which hurt super bad to chew but a few cropped up on a tonsil or down on my gums. My tongue clearly took the brunt of it though. Salt…was a no-no, but let’s be real…I couldn’t taste it anyways. It just burned like fiery hell. The taste buds may have been gone but the nerves weren’t.
Gone, Glanda, Gone 