September 11, 2017 was my first day of radiation treatment for my surprise cancer diagnosis I had received just two months before during a regular left parotidectomy for a pleomorphic adenoma. The days to follow were the hardest days I’ve ever faced in my life. Absolutely nothing could have ever prepared me for the upside-down thinking, the excessive tears that fell, and the physical failures I would experience as each one of the 30 total treatments passed. By the end, I was brittle and broken and faced a insurmountable amount of emotional struggles to find stability in what the next days, months, or years might look like if I was afforded that kind of time.
September 14, 2019 I boarded a flight to Chicago, IL to serve as one of nine social champions and the only non-MD, non-PhD representative for the American Society of Radiation Oncology (ASTRO) annual conference. (And to host two UAB events I planned for the department)
Isn’t God good, y’all?
If you’ve been following along for any amount of time or simply talked to me in any capacity, you know how raw and ugly my healing has been the last two years. Fear of recurrence has eaten me alive and stolen precious moments from my present while emotional turmoil has caused people to pull away or just consider me too much of a hassle to deal with. But you don’t make progress or get to where you want to be without resistance and persistence.
I woke up Saturday morning at 3:30am like I was going back to Lake Tahoe (my favorite place for obvious reasons). I had been looking forward to this trip since the day I was invited, but not once had it crossed my mind that I could potentially be walking into PTSD hell by going to an entire conference centered around cancer and more specifically the sole treatment I experienced…until we were 5 minutes out from the airport.
We pulled into the departures lane and my legs begin to quiver. My heart was racing. The back of my neck down to my fingertips were hot and flushed. The pit in my stomach was getting heavier by the second, and I was fairly sure I was going to be sick. There was no way I was getting on that plane. My very methodical and measured husband was starting to worry I was going to miss my flight as I sat in the passenger seat and tried to get my mess together, so I downed 2 dramamine and an extra dose of anxiety meds for some forced semi-sedation and willed entry onto my intended aircraft.
I spent my afternoon at McCormick Place, where conference would be held, while things were still quiet in anticipation of how overwhelming the next few days would likely be. I knew I had zero chance of absorbing as much information as the physician attendees, but I was hopeful to comprehend about 70% of the content at best. Top that with having actually experienced the very treatment being discussed for 4 days, I felt like it was probably smart to prepare myself. (It is now very clear that I was insane for agreeing to this in the first place.)
Sunday was the first day of conference and also a big day for me as the UAB Marketing and Communications Coordinator. I had my first sessions of my first ASTRO ahead of me as well as the #tweetup where I would meet many of my fellow social media champions, mixed with a bit of pressure to represent patients well and share knowledgeable opinions. Sunday was also the day that I was hosting two events that evening for UAB: A steering committee dinner for the alumni program I’m starting in our department followed by our annual UAB reception.
Monday was my final day at conference so I made sure it was a jam-packed with every session I could possibly fit in before departing for Midway later that evening. We even organized a #retweetup because we all had too much fun at the original #tweetup. And by the time it was time to say my goodbyes, my heart was torn in a zillion different directions.
So how was my first experience at ASTRO?
As embarrassingly cliche as it is for me to utter as a writer, this experience is rather hard to explain for me. It changed parts of my heart that I had been ignoring. It widened my perspective on the physician side of things and how tirelessly Radiation Oncologists work to make what they do beneficial to the highest level and more comfortable for patients. It mesmerized me to see how much camaraderie there was among all of the attendees rather than competition, and it humbled me to see how determined everyone was to learn and better themselves for their patients while leaving their egos aside.
I had intense insecurity going into this being a nobody, 30yr old girl from Alabama that just happened to have been treated for head and neck cancer two years ago. My intelligence was questioned at times as to what I could possibly get out of a conference like this not being a physician or clinically inclined in any way. My ability was doubted to be able to attend conference and also do what I needed to do for the events I had planned while still keeping up with my other responsibilities. And a variety of fears surrounding overall acceptance severed my hopes of making a difference at such a large venue.
When I look back, even though it’s only been a few days since I returned home, I’m proud of myself. I somehow found my place in a sea of brilliant-minded MD/PhDs. I mastered attending enough conference to fulfill my social champion duties and also put on two successful events for UAB. I was received with authenticity from humans who owe me nothing and I very well may never see again. And I experienced quite a bit of unexpected healing in my soul that I know I needed desperately, especially with my two-year post-treatment anniversary and scans approaching on October 20th.
The journey to this point was incredibly hard which is no secret if you read any of my previous blog posts, particularly the ones early on. They’re gut-wrenching for me to re-read, but sometimes I force myself to so I don’t ever forget where I came from (although that would be nice sometimes) and so that I continue to heal and process what it means to be a 30 year old cancer survivor in a healthy way. I have days where I get frustrated with myself that I don’t have more to share these days, but there’s also a blessing that lies within that. Life is calmer and I have less doctors appointments and scans to attend, and I don’t take that for granted by any means. I’m moving more towards “normal” and I don’t feel as much like I have a giant “C” for cancer as my scarlet letter across my chest constantly. Thank you, Jesus.
So ASTRO: The beautifully magical unicorn of an experience, THANK YOU for every tiny little thing you sent home with me from the friendly faces to the non-coincidental, God-sent Uber drivers that also had stories of cancer, healing, and hope. THANK YOU for trusting me as the sole patient voice in the group. THANK you showing me the future of radiation care for those that will unfortunately hear the same words I did. And THANK YOU for believing in me. You have my heart!
There ARE a few special folks that deserve some extra love for standing in support of me and sitting back to watch me go get ’em (as we say in the south).
The other social champions of #ASTRO19 who followed me without question, listened to what I had to share, liked, retweeted, and commented in support of me before, during, and after conference. And my goodness, were they precious souls when I finally met them in person!
The 61st president of ASTRO, Dr. Ted DeWeese took the stage on Monday with a presidential address full of promise and progress in the field of radiation. So much so that I went and found him after the session and the first thing he did after I introduced myself was hug me and look me straight in the eyes to say, “Bless you. I’m so glad you’re here.”
My lifesavers: Dr. Bill Carroll who was my surgeon and the one who quietly gave me the news during his post-op rounds, Mrs. Kristi Gidley, the PA for Dr. Carroll that has blessed me each and every visit with her wisdom and gentle nature, Dr. Sharon Spencer, my fearless RadOnc who treated me right here in our department and has always made sure I’m cared for, Dr. Sam Marcrom, who was a PGY4 when I was diagnosed and has been a wonderful friend and colleague ever since, and finally Ms. Laronica Conway, my coworker and the sister I never had that has kept me grounded more times than I can count and pointed me to the Lord all the other times.
The UAB Department of Radiation Oncology: I was hired in this department in March 2017 before I had surgery and was diagnosed in July of the same year. It has been a whirlwind but they are the ones who, at the end of the day, made it possible for me to attend.
My parents. It goes without saying that these two would believe in me. They brought me into this world and let’s be honest, I’m their favorite daughter. (Note: I’m the only daughter) But the days leading up to my trip and the morning I left were filled with encouraging texts of best wishes and a wonderful time in the windy city.
And my precious husband K.T. Lord Jesus, I’ll never be able to give back as much as what this man has given me. From bathing my feeble body post-surgery because I was unable to do it myself to cheering me on in literally everything I’ve ever tried to do, whether I succeeded or not, he has been by my side and has loved me fiercely, unconditionally, and without wavering every single day.
So needless to say, ASTRO provided ASTROnomical blessings for me as a patient, as an employee, and as a human, and I am eternally grateful! See yall in Miami! (hopefully 😉 )
On July 6, 2019, I celebrated two years of no Glanda and no cancer.
Immediately after my surgery two years ago, I was SO SURE that I was healed and that the whole benign-to-malignant-flip-in-the-operating-room situation was a miracle that none other than Jesus had performed so I could eventually find my purpose through it all. But as time has gone on and the questions and fears have terrorized me with vengeance, the miracle that has brought me people, writing, opportunity, and perspective has at times become some sort of nightmare I fight to wake up from.
The weeks leading up to my surgery anniversary this year were pretty scary…
Nothing felt safe. Nothing. And this was in no way how I had always imagined my two-year anniversary to look.
My two-year anniversary is a day that I had dreamed of since the pathology was first confirmed and since I heard the words, ” but once we get about two years out we will all feel a little better about things.” Dr. Carroll and I had a giggle over not remembering he said that recently, but let me tell you, I have clung to those words for hope on so many hard days with the expectation that there was, in fact, some sort of a resolution to come of the fear and anxiety that absolutely consumes me at times.
I’ve just always imagined of the two year mark as home base, a place of safety and security where I could rest and cozy up to the solidarity of my health. It was my something to look forward to even though I was slowly stumbling my way around the other bases at the time. It felt like a milestone where I could finally breathe knowing I had made it. I had survived.
Unfortunately, cancer’s not quite that cut and dry. A date on the calendar doesn’t wipe away emotions and health sure doesn’t shed any grace on delicate situations.
I have thought about cancer in some capacity every single day of the last two years. There are many days I feel the true weight of knowing my body made cancer cells at one point. There are days where I get overwhelmed thinking about how far I’ve come in strength and character and fall to my knees in thanks. There are other days where I sit in a filthy pit of destructive thoughts trying to claw my way back out to real life. And there are days I look in the mirror and feel like the lost and broken little girl that I was during that one other time in my life where I completely lost who I was.
If you haven’t gathered this from following along yet, cancer diagnosis and treatment is a bit like riding a rollercoaster blindfolded in terms of mental and emotional well-being. The turns that make your tummy drop and the upside down moments come without warning, and there’s definitely plenty of screaming. My instinct is always to apologize and pull away from those I have unintentionally burdened when I get scared of potentially what’s to come, but I continue to return to this place because there is someone somewhere out there that is feeling the same way but is also feeling very alone.
I told someone the other day that I never once imagined that my place of purpose would be cancer, and with a bit of a chuckle, I chewed on those words and swallowed them hard. But isn’t that the gospel? Going through something horrendously difficult for the ultimate benefit of others and the kingdom? Woof.
So what does two years post-op look like for me? It’s pretty mediocre. I’m far enough out to understand some of the deeper effects of what I’ve been through and far enough out to understand the risk that still comes with being a (former) cancer patient. It’s pretty weird to be honest, but I’m dang sure glad I can say I made it here to this important milestone.
Now, onto year 3! Onward and upward.
I spent the last week at the beach, and in true Glanda fashion, a lot of reflection took place. I always go back to where I was the last time I was in that particular situation whatever it is and try to think through the change that has taken place. How did I feel about certain things? What were my thoughts centered around? What was I thankful for or what details around me did I take notice of? Or what were my anxiety triggers and how in the world do I prevent another embarrassing episode?
The beach is my place (other than Lake Tahoe and the swing in our backyard) but last year’s trip to the beach nearly wrecked me. I had developed fluid behind my macula in my eye and didn’t know it, so I spent most of my trip thinking I had a brain tumor growing and I was losing my vision. Yeah…I know. I also don’t do super well with heat (also an irrational anxiety thing for me) so being on the Florida shores in August ’bout sent me over the edge.
I learned a lot about myself on that trip. It was the trip where I had picked up the book “Battlefield of the Mind” again and got gut-punched by a few things in there. Things like the idea that trying to figure everything out in life is essentially playing God and that somethings just need to be left alone in the hands of God. I learned I’m still quite self-conscious about myself and I endlessly compare myself to others. (Especially on the beach, can I get a good amen?) And I learned that I close up and get quiet when I get insecure.
So as you can imagine, going into this year’s beach trip, I was nervous. We were staying in the same condo we stayed in last year and we generally do the same things every year so I knew a couple of specific circumstances were headed my way that had gone awry last year. And to top it all off my husband was tied up in trial until Thursday, so I was there with my in-laws by myself from Sunday to Thursday to be a totally normal, regular functioning human being.
So, to get to the point, I returned home on Saturday with healthy eyeballs and only a very, very mild anxious moment that passed within about 10 minutes. Victory.
But here’s what that feels like to me…losing my purpose. Normal is the very thing I’ve been striving for since diagnosis and here I am living about as normal as I can and I feel weird about it because I feel like opportunities to share and encourage and educate in a sense have run out.
How can I be relatable when I’m skipping around with glitter in my veins while my heart knows many of you are tormented by your bodies and the disease that has tried to wreck far too many of us? How can I share my heart when it looks too easy over here and you’re experiencing pain and depression?
I don’t know the answers, but what I do know is when my heart needs to share, I’ll be here. And when I feel the Lord lead me to an idea that I recognize may help someone (even if it’s just one) I’ll write it. But most of all, I hope you know that no matter how it looks on the outside in my world, I totally understand and sympathize with the real life things you are feeling and thinking while you wait on your normal to return too.
Onward and upward, until next time…
Let’s talk scars for a minute. Have you ever thought about why they’re there and what they represent? Have you ever taken the time to study the details of yours? Maybe you have a favorite scar…one that reminds you of how much you loved to ride your bike when you were little and how long it took to perfect your balance. Or maybe you endlessly slather vitamin E and other oils on top of your scars in hopes of them disappearing.
As cancer survivors, we have scars of all kinds, most of which we don’t enjoy reflecting on or studying, and I think it’s safe to say that we are fine covering them up and hoping our future is filled with way more bike rides and far less treatments.
But today, when I came back to this very post that I started earlier this week (which was initially about how the scars that we as cancer survivors don often cause us detrimental self-esteem issues and toxic thoughts about our identity), I was overwhelmingly humbled.
Every time I read back over the word “scars” in my half-written blog a vision of the bloody and absolutely brutal beating that Jesus took before he was hung on the cross flashed before me.
The day I started that post, a friend had noticed a pea-sized red splotch on my neck that radiation gifted me. It kind of looks like a hickey so in a moment of vanity I made sure my hair covered it and went back to my desk to take a picture of it’s current status and find some sort of joke to make. I thought humor might be the best route to take for some encouragement to those that also feel some sort of way about their scars and their markings that remind them of their journey. But I came home that evening and told K.T. about the post and that I didn’t think I could finish it because I knew my scars were far less than what some stare at in the mirror every day and I had no leg to stand on on that matter.
My intentions were good, I promise, but I realized that the people that are so tragically hard on themselves need a different truth if any real change is to come. The truth of faith. The truth of hope. And the truth about eternity.
Our scars are a representation of the goodness of Jesus, not a reason to feel ashamed, y’all.
So how does that make sense?
Through cancer and everything else I’ve been through in my life, sovereignty has always been one of my favorite characteristics of the Lord. The fact that He knows each and everything that is going to happen, before it happens, and He’s had it all figured out before I was even a thought is some pretty cool junk.
As devastating as the day I found out that pathology confirmed the cancer, I was eventually able to find some peace knowing that God wasn’t as surprised as we were…in fact, He wasn’t surprised at all. Now, this is where some might say, “Well if He knew, then why didn’t He stop it?” (And don’t think I didn’t ever ask that question at some point, too). The best answer I have for that is He knew my diagnosis and my journey could be used for good…”could” being the key word there.
It was up to me to find that good and use it, and thankfully the Lord helped me position my heart towards that when I asked. But what if I hadn’t? I almost didn’t. I honestly started this blog as a sort of weird-public therapy for myself having no clue where it would go or who might read it. I just wanted easy documentation because I knew my propensity to blackout tragic things after they happened. But He saw the people that might read it and find answers. He knew the people that might read it and find Him. And He knew the people that might read it and find community.
The point is, the Lord ordered every single one of my steps and those details are now dappled all throughout various posts along the way. And for that insight, I’m thankful and I’m tethered to a quiet peace that sustains me a lot of days.
Healing…a word of many definitions.
The word means something different for each person, situation, and event. But for cancer, I think it means “progress” in one or multiple areas.
If you’re familiar with the Easter story at all, you know that Jesus was beaten, betrayed, hung on the cross, and buried in a tomb. Three days later, the tomb was empty and Jesus had risen…healed.
But what does that have to do with us and our earthly healing or lack of?
Jesus walked out of that tomb without a scratch on Him and so many of us don’t seem to be afforded that kind of miracle. Instead we may be left with residual symptoms or even continued disease. But perspective is CRUCIAL here.
In so many ways, we are just as healed as Jesus was. Stay with me…We’ll never be Jesus but there’s a point.
So Jesus offered His body and His blood. Cliff notes version is He chose to die…for us. And by choosing that, He scooped a big ole pile of yuck, pain, bad choices, dumb mistakes, hurtful words, resentment, disease, hard times, and tragedy on top of Himself. Why? Great question. Because I sure wouldn’t do that for every single human on earth and every one of them to come. Nope. But His purpose was so that we didn’t have to worry with those things. We can go on with our lives with clear hearts and minds, and start over healed if that’s the faith we choose. That’s some serious junk.
So not only did the Lord know that cancer was a part of my story and that I would go through absolute hell for some time and hopefully come out better on the other side, but He hung on a splintery cross pierced with nails so I didn’t have to worry with it. (Now, I have admittedly worried with it a time or two, but the point is, I didn’t have to).
This is a tough one in faith. There are hundreds of promises the Lord makes to His people throughout scripture. But there’s one in particular that He doesn’t promise that I had a super hard time grappling with over the last 2 years…health.
Growing up, I always thought protection meant safety and safety meant away from harm…and to me, disease was harm. So when I was diagnosed, I spent some time really angry with God, because He was supposed to keep me safe as part of this faith thing and I wasn’t “safe.” I was 28 and newly diagnosed with cancer. What in the world.
But as I’ve learned more about myself and my character and tendencies through all this, I’ve learned that I have holes in my faith and I have habits I’m not proud of that have come from other experiences. I’ve learned that faith doesn’t equal fair, but instead it always equals good and it always equals forgiven.
And for me it equals identity and purpose.
The promises of the Lord are magnificent. The things Jesus did and said on this earth are mind-blowingly extravagant and something literally no human on this earth is pure enough to continually do without eventual fault. He promises to love me always. He Loves me unconditionally. He’s always there for me. He provides perfect peace in times of trouble just for coming to chat (pray). He wants to bless me abundantly. He wants to protect me from the path I’m not supposed to walk (not the path I think I’m not supposed to walk). He promises me the reward of heaven for loving Him and knowing Him. He promises a fruitful life full of joy and blessing. And He promised that He will always be with us as He was going to the cross (even though we were the ones that hung him there).
Well what does this have to do with scars and cancer?
See that scar hooked behind your ear and down your neck? The Lord knew you would find the lump to have it removed. See those tiny hairs sprouting back up from the top of your bald head? That’s the manifestation of healing and the promise of new life. See the asymmetry of the “normal” side and the cancer side? That’s the blessing of continued purpose in living.
So today as I study my scars, I’m going to choose not to frown as I remember the heartbreak, the pain, the suffering it took to get here. I’m going to thank God that He knew the exact moment I would find out about my cancer. I’m going to find joy that He is continuing to heal my heart as well as my body. And I’m going to rest in His promises and His sacrifice so that I can live peacefully among this beautiful earth no matter what happens next. And I hope you will too.
Happy Easter, yall! From my scars to yours!
Onward and upward!
My heart in this blog and my journey has always been to provide perspective and to be able to share the real and honest truth about what it’s like to travel these treacherous roads, both physically and emotionally. Since treatment ended, I have been busy growing a list of posts that I plan to write, each to fall into the Radiation Education category to address some of the common questions I’ve been asked along the way.
When I look back at what I’ve gone through and what potentially lies ahead, I generally have two emotions…fear or overwhelming peace that it happened and will happen exactly like it was supposed to. These are two emotions that typically fight each other, but the best part of that is that they can’t exist at the same time. I’m either one or the other, and that’s usually a good read on where I’m at spiritually and mentally.
This journey has caused me to face parts of life that I honestly wasn’t ready to (like mortality), and it’s placed me toe-to-toe with the very realistic fear of recurrence that nearly every cancer patient faces at one point or another. But there’s also the fear of failing, the fear of my body failing me, the fear of rejection, the fear of putting my writing out there, the fear of not ever feeling like myself again, the fear of not being able to have children, the fear of not accomplishing what I’ve set out to do, and the fear of leaving this earth and my family too soon.
The list doesn’t end there, but in facing many versions of fear so far, I’ve learned ways to cope and it’s important to me to share a few of those things that I feel have helped me:
At the root of every single fear and moment of mental and emotional weakness, lies a common denominator that has taken me a very long time to figure out. Trust. So, is it safe to say that if I have a long list of fears then I have trust issues? Ouch.
Growing up in and around church (and in the Bible belt), you hear your whole life about how the bible says “do not fear” no fewer than a zillion times. I can honestly say that at 28, I hadn’t really met anything in life yet where immense fear was my emotion. But let me tell you, when your health fails you in a way you never saw coming, you find every last one of those times in the bible the Lord instructs us not to fear. But if you’re stubborn like me, you still need more. Three words don’t fix internal chaos and panic quite that easily.
So I prayed. I begged desperately for peace in my heart and for the Lord to restore my health back to some sort of functioning state so many days. And I get that prayer feels super weird for some folks (especially praying out loud), but I’ve personally found comfort in taking the fears I’ve felt to the Lord and letting Him carry that burden while TRUSTING (there’s that word again) that He’s got it worked out for my good. Also that He sees the bigger picture, the whys, and the why nots, and He’s leading me exactly where I’m supposed to be. Ultimately He is faithful, merciful, and most of all He understands, so when He says “do not fear,” He backs that up with His character and that is what eventually calms the chaos.
I bought this book years ago, read a few pages, and put it down. Not because I didn’t like it, but because it wasn’t speaking to me at that time in my life. I lost interest. But I picked it up again recently and holy smokes, it blew my mind and wrecked my heart.
There’s a section in there where Joyce talks about feeling the urge to know the “whys” of the things that happen. She goes on to explain the exact process of thoughts I typically have when something uncomfortable or undesirable happens. The rehashing and the wishing I could do it over and the simply trying to understand. That’s not so much to ask, right?
Not exactly. A few paragraphs down Joyce flips the script and explains how trying to figure out the why by ourselves and reasoning with the Lord about various matters is the same as playing God (because knowing all and being God is His job. Not mine).
I was at the beach last year when I read that, and it socked me right in the gut. I was days before scans and I was in a state no one should exist in on a regular basis. All of a sudden it made sense why I had always felt even more lost in trying to find what I thought was truth and what I thought would help me feel better. Spinning in circles to figure out the why creates confusion which is not what the Lord has for us so I was basically chasing the enticement of the devil. Ouch again.
This book teaches you to train your thoughts for peace and how to take control of the thoughts that are toxic to your mind and general well-being. Definitely worth the read while swimming in scary seas.
I’m a huge proponent of this one! In this crazy connected world we live in, it’s all too easy to grab your phone when something ails you and search for the answer to what it might be. But Google has the magical powers of taking you from headache to probably taking your last breath in a matter of 3 clicks.
Yes, there are informative sites out there and credible ones, too, but the truth of the matter is that every single case is different. And just because you have a few of the symptoms listed doesn’t mean that’s what you have. Two people can walk into a doctor’s office with the same symptoms and walk out with two different diagnoses. Doctors go through years of schooling and training for a reason and those years are not to be invalidated by your excessive and aggressive googling. (Side note: Choosing a doctor you trust is important too)
There is no one on earth that can truly understand what you’ve gone through and what you’re going through more than another survivor. They’ve likely had similar thoughts, similar aches and pains, and similar fears. Yes, your caretakers have been there with you every step of the way and they too have a very unique perspective on things, but even that’s different than a survivor connecting with another survivor.
Visit a few support groups in your community or talk to someone in the waiting room at your follow-ups. I know that sounds super scary for my fellow introverts, but trust me on this one. Find a few friends you can talk to about what you’re going through in a reasonable and positive light. Don’t focus on your complaints, but share in the feelings and thoughts you have and then encourage each other to better your lives in some way.
Attitude is so, so important for cancer patients and survivors and so is community, so find your people and be intentional with staying in touch and checking on them. Don’t wait on them to check on you!
This one goes hand-in-hand with attitude. I’ve learned that the busier I stay, the less I have time to let my mind wander about what already happened or what might happen in the future. I may be worn out tired all the time and barely have time to eat and sleep, but let me tell you…that feels a lot better than the anxious nausea and sweat I experience when I let my mind go full tornado on me. For most, it will be a balance. You will need both times of running around busy and times of rest, but the key is to not let yourself become an isolated couch potato. This life is far too beautiful and people are innately relational beings, so as one of my favorites Amos Lee sings, “let your little light shine!” (Here’s the song)
This journey is by far the hardest thing I’ve personally dealt with. I have a hard time believing I was diagnosed with cancer at 28, for it just to be “something that happened” and for me to never speak of it again like it was equal to a bout of spring allergies or something. But hard times bring big blessings sometimes. Trust the process and get after that fear. It doesn’t belong here!
Along the way, through my 30 radiation treatments, I gathered a few tips and tricks that helped to ease or lessen some of the side effects and symptoms that come with head and neck cancer treatments. This list includes my top 7 items that tend to help during head and neck radiation therapy that you can buy OTC (over the counter) at your local drug store:
At some point you will likely lose your sense of taste. It’s an unpleasant and unfortunate experience but it seems to be one of the more common ones. There’s a certain taste that lingers in your mouth that almost makes you a bit nauseous and it’s hard to find something that gets rid of it, even brushing your teeth a zillion times. My gut instinct when this started happening to me was to throw a piece of mint gum in my mouth, which had usually helped when I otherwise had a bad taste in my mouth. This situation couldn’t be that different, right?…Boy, was I wrong. While I didn’t have visible damage from radiation in my mouth yet, chewing gum burned my tongue and gums something serious. So I went on a search for an alternative…lemon drops. Sweet things were hard for me too, so I was honestly a bit skeptical of this one, but surprisingly, it helped cut the trash-like taste from my mouth and actually got some saliva floating around in there too. That’s a win/win.
This one’s marketed as an expectorant, but it also has some secret powers when it comes to thick saliva. Rope-like saliva is another lovely side effect of H&N radiation therapy and when your saliva is less than normal and then it starts to thicken, swallowing and eating become more annoying and much harder. Taking a daily recommended dose of over the counter plain guaifenesin did wonders to think out my saliva, just like it promises to do with mucus when you’re sick.
Bonus: Depending on what season your treatments fall into, you might need some extra help with mucus and seasonal snot as well. Boom…thinner saliva AND thinner mucus.
I’m not sure if dizziness and nausea is on the treatment side effect list, but between the yucky taste in my mouth, the thick saliva, the crustiness in my ear canal, and general grossness of it all, I was feeling a little green by week 2 or 3. Taking a dramamine every so often during the day decreased this symptom dramatically for me and kept me feeling somewhat grounded and slightly less nauseous, which was enough to convince me to keep a full supply on hand.
Moisture is SO important for your skin during this time for comfort as well as for healing, so this ultimate healing ointment is yet another one you’ll want to keep stocked up. Aquaphor is fragrance free and generally soothing so it won’t irritate your already irritated skin more, and it wont burn like regular lotion or some of the other products out there might. It’s also a skin protectant so it keeps moisture in and bad things out (to an extent).
There are plenty of options out there to use as moisturizers during treatment, so as with most things, it’s up to you but Aquaphor is a great one. Doubles as a great chapstick too!
Every night before I went to sleep, I wrapped my head and my neck up in gauze. Sounds glamorous, right? It’s not, but it did keep my skin protected from the elements and the flopping around in the bed that I unsuccessfully tried to prevent with a pillow fort. The mornings are never fun in this type of situation as it is. You’re stiff, crusty, probably still tired, and your head feels like it’s going to break off with every slight movement of your neck, but the gauze keeps it moist and keeps it from drying out too much while you’re lying still. Let’s just say it makes sleeping 90% more ridiculous looking, but makes mornings 50% better as far as comfort goes.
No, not for your ears! Q-tips for your skin. When you get to the point where your skin is sloughing off and it’s incredibly painful, q-tips were a big help for me. When I unwrapped my neck each morning and peeled the gauze away from my skin, there was always some residue of clumped up skin that had naturally come off overnight. As with most wounds, cleanliness is important but soap burns like you know what, so what can you do? I would wet the ends of a q-tip with cold water and very carefully (VERY CAREFULLY) removed the chunky parts so the fresh skin was left. Now, I do not recommend any scraping or scrubbing or anything even close to that. But using something with a mostly soft end to it can be a lifesaver on those rough mornings.
Last September, a former radiation therapist named Cheryl Turner contacted me on Glanda’s Instagram and asked if I would be interested in being a guest on her Rad-Cast podcast. Rad-Cast is a radiation podcast available on all platforms that provides CE credit for radiation professionals, and as a former RT I knew that she knew the ins and outs of the field (literally).
First response… *looks around and behind me* “Who, me? Are you sure you got the right girl?” I am sooooo not the public speaking, center of attention type (and there was no way she could have known that) but my fingers typed “yes” and some other stuff and I hit send before I could talk myself out of it.
Uh oh. Now I was committed and the closer it got the more nervous I got. It’s not unusual for me to fumble my words or say something stupid and that’s all I could think about…making an idiot out of myself in this podcast that God knows how many people might listen to. But thankfully Cheryl sent me some potential questions ahead of time which allowed me to flesh out some of what I might say and make sure it was the kind of content she wanted. She was also more than patient with me in the scheduling and recording portion of it all, since I work full time at UAB and coach a university dance team here in town.
So we scheduled a time and date and after a full day of work and dance team practice, we set things up to do this thang (as we say in the south).
After an hour and a half or so, I emerged from my podcast lair back downstairs and K.T. asked how it went. Apparently I had given all my answers for the podcast because I really didn’t have an answer for him. I literally told him, “I have no idea. I just talked.”
But so I don’t stall any longer because I’m STILL nervous about the fact this happened, here’s my podcast debut…
Enjoy, my friends! Onward and upward!
Last week, K.T. and I had the opportunity to sit on a patient panel with 4 others at the UAB Head and Neck Cancer Survivors Support Group meeting that I’ve been a part of for about a year or so. The questions prompted us to traipse back through the hard days of our journeys and dig down into the rawness of it all. The questions surrounded fear, mortality, diagnosis, and heartache among other topics, but even though I was there to share my story in order to potentially help others, I left feeling that I was the one that was helped instead.
The meeting started off with each of us introducing ourselves, including the UAB faculty and staff that so graciously give their time to be there as a resource to our patients. Several questions were then asked to the patients to kick off the panel portion, and then a question to the caretakers was posed. “What the most rewarding thing and the hardest thing you faced as a caretaker?…”
K.T. spoke up and described the delicate moments from when Dr. Carroll called to tell him that surgery went well but his wife of 2.5 years likely had cancer until the moment Dr Carroll told me himself. He took us through his emotions and the unimaginable task of breaking the news to my parents and his, who were all there waiting for me to come out of recovery. And he briefly touched on the decision he had to make to wait to let Dr. Carroll tell me the news when he did his rounds rather than him telling me and not being able to answer the questions I would inevitably have.
This wasn’t the first time I had heard this story. K.T. has shared these moments with me several times before, the first being surgery day. He had joined me in the hospital bed after everyone had gone home for the evening and he told me about all I missed while I took my very long surgical nap. But at each different point in this journey that I hear him describe those long, grueling moments of that day, another layer is exposed and I learn something about life.
For the first time this week, I feel like I truly grasped the weight that K.T. has had to bear for me and with me through all of this (which all of the sudden seemed heavier to me than actually having the cancer myself because it’s not just his own load he’s carrying). He’s had to carry parts of mine too. We’ve had countless conversations where I’ve apologized for what we’ve gone through with my health, and I’ve spent hours praying that he hasn’t built up resentment towards me for all the slack he’s had to take up while I’ve recovered and adjusted to a new normal, physically and emotionally. Deep down I know he hasn’t because that’s not his heart, but this realization of the heavy load he’s been gracefully carrying was an important one for me.
But what does this realization have to do with any of you? And why even share this kind of thing? Because there is absolutely an essential balance between being concerned with what is going on inside of you and understanding that your close friends and family are experiencing a battle of their own alongside your diagnosis that they weren’t expecting either.
For most people going through a tough health issue, it’s hard to see past the hard days that inevitably come more often than you wish they did. It’s hard to see past the emotional torment you’ve fought through because you didn’t have any control over the physical that caused it. And it’s hard to look in the mirror and not totally recognize the person and the differences that have also happened because they had to. But your family and your close friends have the same basic human need to be understood, just the same as you do.
When the days are hard for you, they may feel guilty that they can’t offer you more help to ease your pain. When your emotions and thoughts are all over the place and unpredictable they may feel like they fall short of knowing what to say to comfort you. And when you look in the mirror and feel insecure about what you see, they may wish they could fix it or boost your confidence. But the truth of the matter is they can’t.
Now this is by no means meant to make you or anyone else feel guilty. You are not selfish for thinking and feeling the things you do. These are all very normal things that happen in the process of healing on both sides. But the key here is understanding its a process and that requires forward movement. Getting stuck in a rut isn’t fruitful for you or the people who love you. So in and effort to keep myself honest and share my story with you as I’ve promised to do, I have to encourage you to lift your eyes and try to see things from a different perspective and keep bettering yourself.
Ask yourself these few questions:
Those are hard questions, and I have just as much personal identification and work to do within myself as the next guy, but cancer or not, being honest with ourselves and giving life our best each and every day is worth it.
Now, I hope it doesn’t take a patient panel or a story you’ve heard several time to awaken your spirit from the famous fog that cancer brings into our headspace, but I hope and pray you lift your head and take another step towards your new normal and the BEST normal that the Lord has waiting for you!
This period, often called “the lull” is BY FAR the hardest period of time you will experience in comparison to all the others. It’s the time immediately following treatment, and for most, it’s the first time that you are without any kind of active treatment. From the outside perspective, this time would seem to feel the best and provide some much needed relief. You’re finally free from being zapped every day and/or having poison pumped through your veins, but freedom is unfortunately not really the reality that comes with this period of time.
I remember just one short week after my last fraction of radiation, I was gently massaging my skin and neck while sitting at my desk and thought I felt a hard spot around where Glanda used to be. So I set off to find Dr. Spencer in the hallway as soon as I could to ask her to do a quick feel to make sure I wasn’t losing my mind. (Perks of working in the department that treated you I guess). Turns out, I wasn’t wrong. There was absolutely palpable hardness, but it wasn’t disease. It was simply induration, or stiffness caused by scar tissue and all the radiation I had just received, something that’s super normal after everything that side of my head had been through.
No active treatment to a cancer patient means thoughts of heightened risk for the potential new growth or recurrence. It means fixating on the fact that essentially nothing is being done to kill your cancer anymore (if any still remains) and that’s some scary junk. To add to that, there’s a good chance you’re emotionally and mentally SPENT right after treatment so fending off these thoughts is hard and taxing on your body and spirit.
Since treatment, I’ve learned to poke around on things a little less. I still massage and stretch my neck like a good little patient, but I try to do it mindlessly and focus my thoughts on how far I’ve come in my healing and ability rather than what every little thing I’m feeling is or might be.
But what can you do as you tread the waters of this weird stage of the journey? Well, what you can’t do is go back into treatment (and we all know that’s not actually what we want) but there are a few “normal” things you can do that I believe help. But honestly recognizing this season for what it is, is half the battle.
Don’t roll your eyes at me! I know this sounds dumb and like an obvious answer to…well, life. But treatment takes a lot out of you, including your appetite, your taste, and in some cases your ability to eat. So the time after treatment is a great time to start working on building your strength back. Start back eating if you can (or continue to eat) foods that are rich in protein. Those are the foods that re-build healthy cells and will fill you up the most. It’s also essential to find foods that taste good to you and eat a lot of those to build your caloric intake back up until you get closer to more of where you used to be. Most importantly, remember this isn’t going to happen overnight. It’s a marathon rather than a sprint.
Sleep, like protein, restores your body and gives it the time it needs to repair itself from the damage that was caused during your treatment. While not everything will heal up perfectly and return to what it used to be, sleep is still extra important because our bodies do have amazing healing ability and giving your body what it needs aids in your overall wellbeing and quality of life. So this is the time to sleep, take a nap, relax on the couch, sleep some more, dream about your favorite things, take another nap, watch a movie, nap again, and then finally go to bed to prepare for the next day. And besides, sleep is probably all you’ll feel like doing for a while anyway. So why not take advantage of a good rainy day, a few good movies, and all the zzzz’s.
Take a walk
Around about a week or two post-treatment, it’s important to make sure you’re spending a bit of time during the day moving around and gaining some muscular strength back as well. I know I just suggested a lot of sleep, but there’s a balance in there somewhere. You don’t want your muscles to atrophy too much if you’re able to get up and move around, but you also don’t want to overdo it too soon. Maybe this means moving from the bed to the couch a few times a day. Maybe it means getting up and getting a shower. Or maybe it means going for a walk or running a few errands around town. Just take it easy and do what you feel like doing. Movement is also an excellent idea if you are at risk for lymphedema (swelling because of the buildup of lymphatic fluid). It really depends on the person and the severity of treatment side effects, but the sooner you get back to doing more normal things, the more normal you might start to feel overall.
I’m not sure how this will resonate with everyone else, but working to accept and understand what I’ve been through proved to be very healthy for me. This doesn’t mean I figured out the “why,” though. Cancer doesn’t give a reason when it arrives. It just shows up, so save yourself some trouble and forget every trying to find the why. (I wish someone had told me sooner). When I suggest trying to understand what you’ve been through, I mean understand that what you’re going through is a necessary byproduct of something you have no control over and that’s ok.
Writing my experiences down, talking to someone I trust, or just quietly pondering things all healed me bit by bit but as always, it’s crucial you keep your thoughts in check and not let them get out of hand. The truth of the matter is, what happened happened and it must be processed. There will inevitably be some pretty dark days following treatment and throughout this journey overall, and everyone will manage those differently. But don’t just step foot out of the treatment room and forget where you came from. Your journey wasn’t for nothing and you’ve made it! That’s a really big deal!
Overall, the goal post-treatment is relatively simple, however not simple to do. Find some sort of normalcy and routine. Now, I 100% understand that’s a bit of a joke because NOTHING feels normal after treatment. Nothing. But set some version of normal as your goal and go after it day by day. Before you know it, you will be looking back at the post-treatment days admiring how far you’ve come and you might even recognize a few pieces of normal in there too.