We begin the early years of childhood learning our colors, the alphabet, how to count, our directions, and our shapes. As we grow bigger our learning shifts to more abstract things and we learn how to share, how to be kind to one another, where we are from, who our parents are, and
how to tell time. But at some point, things shift again and we realize we have feelings and emotions about these things in life we’ve learned about…especially time.
We eventually learn how to feel from our hearts and how to manage those emotions when they come, but time is something you don’t knowingly develop an emotional relationship with.
I have such a vivid memory of the exact moment I heard the words “the cancer is confirmed.” I was sitting on my side of our bed with my knees hugged into my chest and I was hanging on every syllable Dr. Carroll spoke over the phone. What I remember most about the following hours and days, is trying to come to grips with the fact that my life might not extend into the geriatric years like I had always envisioned.
Life might not equal rocking our sweet baby to sleep in the upstairs bedroom of our house. It might not equal a 20+ year career I can look back on and be proud of. It might not equal living life through the legacy our parents left on this earth.
Mortality for me wasn’t about what I might go through or feel like along the way…it was about how long I would have to go through and feel those things.
Mortality is HARD to grasp. The realization that I wasn’t actually going to live forever was a tough hurdle to clear (although it’s somewhat innately understood). It was a realization for me that, for a while, took the joy from my eyes and the genuineness from my smile, not to mention, the peace from my days.
But at some point I realized I was too busy mourning the life I was still living rather than enjoying and appreciating it, and besides, no one gets out of here alive. Of course, it was a gut punch to hear my body had grown cancer cells, but it also (eventually) gave me a healthier set of expectations about time.
Culture teaches us that we deserve to live long, enjoyable lives, but reality (and scripture) shows us that the Lord can take us home at any point. Cancer may or may not be what ends my earthly existence but understanding that it could (along with a long list of other things) has allowed me to not just appreciate each day but look for the value in each and every day.
But it’s not always that easy…
I am not oblivious to the fact that many people diagnosed with cancer fall into depression filled with self-deprecation or crippling anxiety. My mom and I, for example, have dealt with life after cancer VERY differently. She’s a worrier and I’m more of a “whatever’s going to happen is going to happen” kind of girl. (But disclaimer, because my mother will come after me for this if I don’t say it: I wasn’t that way from the beginning of all this). Regardless, cancer has been one of my biggest blessings while she’s still a bit angry that she ever had any kind of cancer to begin with.
Everyone is different, but I believe we can learn to enjoy life with a little expectation management and a shift in perspective.
Don’t expect to feel like you did pre-treatment
The medicines and methods currently used to treat cancer cells are intended to disrupt parts your body, specifically to kill the bad cells. But those innocent bystander cells are going to get messed with just a little bit too. Your stamina and strength will likely be different. And you might have feelings of “I’m just not what I used to be,” or feel like “cancer ruined you.”
You will be different after treatment, but if you leave your expectations of what everyday life looks like at the standard that it was at before any of this ever happened, then you will surely be disappointed each and every day. It’s just not realistic.
Train your brain
I have this saying that my mother absolutely despises (so I say it a lot)…
“Where the mind goes, the man follows.”
Essentially your thoughts are the rudder to your life. Positive thinking tends to lead to success and happiness. Negativity and complaining lands you in a rut of “woe is me.” So, despite your circumstances (which will never be exactly what you want), you can still enjoy life and find joy by just changing your thinking a bit.
Temptations? Yes, temptations. As you begin to heal from the emotional and physical trauma of treatment, you will find particular patterns and triggers that heighten your anxiety and/or negative thoughts or feelings. Whether it’s Google (can I get an amen?) or social media or certain people and places, it’s important to recognize those things and keep a reasonable distance from them.
Now this takes a bit of self-control and discipline but it’s been a valuable tool for me. Particularly this week as Gabriele Grunewald passed and many others with ACC (Adenoid Cystic Carcinoma) have struggled, I’ve had to limit my time on Facebook and Instagram, where updates from cancer support groups and such are peppered throughout. And my tolerance fluctuates. Sometimes I’m fine reading all the things, and other times it makes my mind spiral and I start noticing the physical manifestations of stress and fear show up.
There’s never going to be a perfect formula for living life after cancer. People and diagnoses are far too different across the spectrum. But it’s time and how we spend it that is the steering component for the health of our relationship with our mortality. Take the time to access where that stands for you. It’s worth it.
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.
At each phase of this journey, I have had to remind myself to look back at where I’ve been so I can better focus on where I’m headed. Glanda has been known to say “onward and upward,” and that makes a polite nod to the fact that you’re coming from somewhere and you have greater places to go.
As I left work down the long treatment hallway on Tuesday night, I stopped and peered into the vault where I was treated just a year and a half ago. On a normal day, I don’t dare stop, but instead walk as fast as I can down that hallway to ignore the usual treatment noises and bustling that happens around that area. But tonight, the Varian Truebeam STx sat there quietly “sleeping” and looked so peaceful that it struck me some kind of way and I had to stop and stare.
What? Am I crazy for personifying the radiation treatment machine that made my skin look like the walking dead? Probably, but the longer I move away from the hardest days of my life into days where the fruits are starting to grow from the seeds of faith that were planted then, the more I begin to have a strange fondness for the things that healed me and helped me along. And the machine is just one of those things.
I’ve honestly gone through a period of time lately where I didn’t know if I still had purpose in the UAB Department of Radiation Oncology. I wasn’t clear on whether it was time for me to move on or not, and I definitely wasn’t clear on if it was time, then what would that even look like? Have I been here long enough that my story doesn’t resonate with anyone anymore? Is my story too specific that it doesn’t reach enough of our patient population to matter? Am I done here trying to make an impact on our sweet patients that have come behind me and face the same kind of hard days of knowing yet another treatment was coming?
The short answer to that is no, and it’s moments like Tuesday night that remind me of that. This place is without a doubt the place that broke me and put me back together, but now that those things are long gone, it’s what I GET to do.
Last weekend, I got to go to my 2nd annual ROAR gala (as a volunteer) where hundreds of people gathered in formal attire to raise money for cancer research in the Department of Radiation Oncology through a silent auction as well as a live auction. Last year, I was 3 months out from treatment, quite emotional watching the whole thing go down as a survivor (don’t worry, I wasn’t crying in public) and my arms had just recently started losing sensation. This year, I walked in proudly and excited (also awkwardly by myself since K.T. was out of town) to see all that would be done financially in honor of those that will need radiation treatment in the future. The numbers aren’t in yet, but a Maserati was auctioned off…it’s A LOT.
In a few short weeks, I will be transitioning out of Regulatory Compliance for clinical trials into a role much more suited to my skills. A chance to create publications for our department, a chance to plan departmental events, and a chance to improve the educational documents that our patients receive before, during, and after treatment among other things.
In the same few weeks, a podcast I recorded with Rad-Cast in February will air where I get to talk about my experience as a patient, how my job/coworkers influenced that, and how faith guided me along the way.
And in another few weeks, I get to sit on a panel with other head and neck survivors and speak to an audience of other head and neck survivors about facing fear and overcoming the struggles that come with cancer.
And ALL of these things are things that fell in my lap because of what I’ve been through. People still look at me like I’m insane when I say that “cancer has been my biggest blessing,” as they probably should, but, y’all look at God! I surely didn’t do any of this on my own and without cancer, none of these things (including moments to stare at that terrifying STx machine) would have been part of my life. Do I want to do it again? HECK. NO. But most of the time, I’m kind of glad I did. (That still makes me a little nauseous to say.)
So with my bit of reflection from the other night, I thought now would be a good time to share a little visual journey of where I’ve been so I (we) can continue to focus on where we’re going!
Onward and upward!
Choosing the team of physicians that will care for you during your treatments and follow-up can be a hard decision. You are likely still processing your diagnosis at the time you will need to make this decision, but there a few things you might consider that could make the choice a little bit easier.
Do they make you feel secure?
Security is a big deal in cancer treatments. Vulnerability tends to increase during this time so you want to make sure the person that you’re trusting your life and overall well-being with is someone that is going to be responsive to that and treat the situation with the delicacy that it deserves.
When you attend your oncology appointments it’s important to feel safe, protected, and generally heard and answered. There are a million oncologists out there that will be able to quote statistics and most-recent research findings, but if they don’t create an atmosphere that allows you to be open and honest with them, then they might not be for you.
Many people feel like if their doctor gets them healthy then that’s all that matters, but hear me when I say that you need someone that meets your mental and emotional needs as well through this journey. They are not counsellors, but their answers need to be ones that you trust and that you are comfortable with. And if they don’t have the answers to questions you’ve asked or symptoms you’ve presented with, they need to be diligent enough to send you to someone who will.
Are they willing to spend time with you?
When I look back on my care team and what meant the most to me, it’s time. 100%, without a doubt, time. The people that took the time to listen to me, to try and understand me, and to try and connect with what I was feeling on some level are the people I truly felt like cared about what I was going through and truly cared about seeing me get better. Of course, as a patient you want to respect the fact that your doctors have other patients to see, but pay attention to their mannerisms and body language.
Do they come in and seem relaxed or do they seem rushed? Do they take a seat and physically get on your same eye level or do they stand by the door for most of the appointment? Do they seem truly familiar with your case or are you having to remind them of the details? Do they take their time in listening to what you are struggling with or do they brush it off like you’re making things up or it’s not as bad as it seems?
All of these things are crucial and I do acknowledge that everyone’s needs are different, but the feeling of actually being cared for is the generally same across the board.
Do you know other patients that have been treated under their care?
We all know the power of a personal recommendation. Whether it’s which grocery store to shop at, which hair salon to visit, where to shop for clothes, or the best restaurants in town, people talk about the things, places, and people that they have had a good experience with.
With cancer care, it’s not much different. Patients will talk about their doctors that helped them feel better and, even moreso if they helped them feel better quickly. To no surprise, cancer patients that undergo treatment also tend to develop a certain fondness for their care team because they feel like these are the people that “saved their lives,” so make sure to ask specific questions to see if you agree with how they were managed as patients and read between the lines.
Are they good at what they do?
This one probably seems like a no-brainer and I realize many of these suggestions involve feelings rather than expertise, but bottom line is that it all matters. Before considering a particular physician for your oncology care, take the time to do your homework. Read reviews about their achievements, their educational background, their honors and awards. Are they affiliated with specialized organizations for their field? Do they participate in grants and research? Have they published any papers?(PubMed is a great resource) I could go on, but you get the point. Credentials matter!
Physicians are wonderfully brilliant people on our earth, and I’ll be the first to argue that the majority of physicians go into the profession to care for people with their hearts as well as their souls. But for some it’s all too easy for patients to become charts and numbers when clinic schedules are jammed packed and days are long. And that’s just the facts, unfortunately.
Working in the field, experiencing cancer myself, and also having various family members need oncology care has shown me all sides of the field, so I share this with you to encourage you and empower you to look for the BEST oncologists out there. Look for the ones that provide what YOU need. Every patient is different and will have different needs in each of these areas. I just pray that these few insights above may lead you to think about things differently as you go to make the decision about who will care for you.