Tips for Choosing Your Oncologists
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.
I Cross My Heart
Because it’s Valentine’s Day and everyone is talking about LOVE, Glanda wanted to get in on the fun too, but while you’re probably already rolling your eyes because Valentine’s Day is kind of dumb and love is a little mushy sometimes, don’t give up on reading just yet. There’s a point!
K.T. and I met in 2012 in a church small group for young professionals. We started dating November of 2013 and we were married March of 2015. And in the 4 short years we’ve been married, we’ve faced my mom’s breast cancer diagnosis and treatment, the death of 3 special family pets, the loss of two different jobs (both mine), my diagnosis and treatment, and my rather steep climb back to physical and mental health. My poor husband truly had NO idea what he was getting into when he stood toe-to-toe with me and said “I do” on that brisk March evening.
At our reception, we kicked things off with our first dance to George Strait’s, “I Cross My Heart,” sung by my longtime friend Ryan Kinder. We had picked the song for the lyrics of course but also because I had memories of listening to it in the car with my mom when I was a little girl. K.T. and I held one another closely while we spun around the room and giggled about all the things that had happened so far on our perfect day and we giggled out of nervousness for what was to come later that night… (I can say that, right?)
This past Christmas as we were making the short 45 minute drive from his parents’ to my parents’ house, we listened to a few George songs with excitment knowing my dad had a Las Vegas surprise to take my mom to see George Strait under the tree. *See bottom of post for more details.
We shuffled through a few classics and then “I Cross My Heart” started playing. K.T. grabbed my hand sweetly as we sang along and remembered that sweet day we got married. Then the bridge came…
“And if along the way we find a day it starts to storm,
You’ve got the promise of my love to keep you warm.”
Next thing I knew, I was a blubbering, crying idiot. When you get married, there’s an understanding that you will face hard times, but never, ever do you think it will actually happen to you. In all my days before March 28, 2015 (and really up until diagnosis) I never thought I would put my husband through the hardship of caring for his cancer patient wife just 2.5 years in. It felt like the worst kind of “storm” short of death that I could imagine, but K.T. kept his promise and always kept me “warm.”
He bathed me after surgery when I could barely even make it into the shower by myself, he made fast food runs knowing that I might not even want to eat what he came back with anymore when he got home, he waited on me hand and foot, and he’s never missed a single day in telling me I’m lovely and beautiful. He’s never made me feel bad about having to care for me. He’s never cried because I was sick…only because of the blessing that I was getting better, and he’s never been anything but thankful for the journey the Lord has had us on. Yeah…I don’t deserve him.
But while I will unapollegetically share with you the man and true blessing my K.T. is, I also want to stress something else very important!
It is crucial that you find and cling to people around you during your journey to love you, support you, encourage you, validate your feelings, and be selflessly willing to help you!
So I’ve put together a short list of things that I feel made my heart swell the most and filled up my love bucket as we’ve traversed some rough waters.
Hug people
No, I don’t mean strangers…unless you’re into that kind of thing (but they probably aren’t, so don’t do it). But take time to hug your people, your pets, your stuffed animals. Whatever. There’s this saying out there that 10 hugs a day improves your health. I don’t know how scientifically proven that is, but I’m willing to test it out. And I’m lucky enough to have a person, a pet, and a stuffed animal. Don’t judge me.
Can I confess that this was a hard one for me? I’m not a super touchy-feely person. I didn’t snuggle a whole bunch growing up (unless I have amnesia) and so when I got married and my husband followed me around wanting hugs and snuggles all the time in the middle of cleaning, laundry, or whatever else I was focused on…uhhh…I was really confused and used to turn around and stare at him like he was insane. But y’all, HUGS give me LIFE these days and I’ve tried to be better at making moments for them. Stressed out? Hug it out. Bad day? Hug it away. It’s become much more of my default, but I do admittedly still get a little annoyed when K.T. unplugs the vacuum to come steal a hug. But don’t worry, he always plugs it back in afterwards.
Take the time
I probably harp on this one a little too much, but don’t be too closed off or too embarassed to talk about what you’re feeling throughout life. And on the other side of things, don’t be too busy to listen. There are few things more important than connecting with someone on an emotional level. A level where you can relate and potentially feel some of the same things they are going through out of empathy. Look people in the eyes and share a little about your heart. People don’t always need advice or an action plan. Mostly, people just need a gentle understanding and maybe a hug or 12 (see previous point).
Our hearts are what make us who we are (fine, it’s actually part of our brains but I’m not a doctor so I’m going with heart), and it’s the moments of connection that create the memories that make a mark on others. It’s been said that it’s not always what people do for us, but how they made us feel. Don’t be scared to feel, yall. It’s magically freeing.
Say “I love you”
I love you is one of the most important things to hear for all ages, but don’t be deceived by thinking “I love you” is just for lovers. Feeling love and even expressing a love you have for something or someone can do wonders for your attitude (and attitude is everything in cancer. Trust me.) Love takes you to a happy place and focuses your thoughts on things that satisfy your soul.
Feeling awkward about it? Didn’t grow up in a loving family? I get it. But try working your way up to expressing how much you care for your people, whether it’s your friends, your family, or your spouse. I promise you that it matters more than you think.
See? That wasn’t too mushy, right? Just enough love to make your Valentine’s Day extra lovely. Happy Valetine’s Day, my friends.
Onward and upward!
*One of the main reasons K.T. and I were so excited about Mom and Dad’s trip to vegas was because we knew this is how she was going to find out. Dad had asked me to help him come up with a way to tell Mom so I waved my magic Photoshop/InDesign wand and came up with this. Glanda fam…meet Dad Strait! Yes, that is my father’s head on George Strait’s body.
Not What I Used To Be
Getting back to “normal” after diagnosis and treatment is a valued status that everyone faced with diagnosis yearns for. There are days of wishing you could rewind and other days where you feel like a total boss for getting through the emotional and physical stress and torment your body has withstood. And while life will never be the same normal as it used to be, sometimes it’s so far from how it used to feel that calling it “normal” feels fake and more like a joke. But fake or not, there’s still some kind of normal that we must live in each and every day as survivors.
Since I was a little girl, dance has been part of my life. It’s my normal. And while that will sound silly to many of you, dance was truly my constant during the many stages of development and learning on the way to becoming an adult, and actually since I became an adult as well. It was the place I escaped into when teenage life was too melodramatic or college stress became too much to bear. It’s the first thing I got back to after surgery, and the thing I was far too weak to do for months after treatment. It’s always been something that allows me to reach depths of my soul that I don’t know how to otherwise, and it connects me to music in this magical way to where I feel the melodies and lyrics in my bones. It’s special and always will be.
In April 2018, (6 months post-treatment) I was asked to take on the title Coach Val for the Samford University Dance Team. It was an easy yes, but it also came with a lot of doubt and literally zero confidence in myself to get the job done like I envisioned it should be. I love dance with all my guts, but I’d never taught a class and I suck at choreography. However, the Lord clearly saw me fit for the job or it wouldn’t have landed in my lap as it did, so I accepted.
Through band camp, two field shows during football season , Christmas break, and halfway through basketball season, we’ve made it. But Coach Val has had more moments of frustration with my body and ability than I can count. It has nothing to do with entering another decade of life this year either. It’s cancer and it’s radiation treatment, the gift that inevitably keeps on giving.
These days I fight through daily neck stiffness, very careful sleeping so I don’t wake up with a headache from a simple crick in my neck, arm and hand neuropathy from inflammation in my spinal cord, and overall lack of endurance and muscle strength that radiation robbed me of. I have to stretch the left side of my neck every morning and I have to treat my head like it might actually snap off if I’m not gentle enough.
But…
Coach Val has 9 college beauties that depend on me to be there for them, teach them, grow them, and help them grow the dance team program as a whole. I have 9 girls that are likely looking for the same deep connections again that they had in their younger years and 9 girls that are likely desperate to find those feelings again in a new season of life. So, I do my best to ignore my “new normal” and waltz back into the life that made me the woman I am. I do my best to tap into the strength only the Lord can provide, and I do my best to continue to grow in my leadership and other skills that might enhance my girls’ lives. And I’m not going to pretend it’s easy.
I haven’t truly danced from my heart since treatment, but it finally happened this weekend. As I hobbled into the house and embraced my husband in near tears, all I could say was “I’m just not what I used to be anymore.”
I was physically exhausted. My muscles were dead, the numb sensation in my arms and hands felt amplified as it usually does when I get hot and anxious, and my neck just felt fragile. Was I physically just fine? Yep. But the emotions are what sock me in the stomach the hardest. It’s when the “whys” resurface and the longing for a “rewind” button get to me, that I break and need picking up again.
Y’all, I don’t say it often, because I am wholeheartedly thankful for this journey and what it’s taught me, but goodness, cancer changes you big time.
I like to think I’m better for being a cancer survivor. And somedays I am. But other days I fail miserably at being a decent human. I like to think eventually it will make me a better wife, a better mom, friend, and coach after more of the dust settles and we get a little further out from treatment.
But the truest thing of all that applies to every aspect of my life is I’m simply not like I used to be. Sure, no one stays the same, but this wasn’t gradual. And I didn’t ask for this.
But it’s my normal now and today (and hopefully tomorrow too) I’m going to choose to be ok with that.
Cancer is Confusing
There are things about cancer that only cancer patients comprehend and fully understand. And because of that, there are things about cancer that us surviviors wish you knew.
Cancer is something I felt to the aboslute depths of my bones and it has recently become somewhat of a distant memory for me. If I’m honest with myself, I’ve intentionally blocked a lot of it out, and I truly never, ever thought I might feel a certain way about cancer being a distant memory. But I’ve found myself almost longing to understand why and what it is exactly that cancer has done to me as a wife, friend, daughter, and sister and I’m desperate to maintain the intensity of life and love it stirred up in my soul.
The further I move away from my cancer journey and that special hell I survived, it has started to seem less real at times. That’s a good thing right? Ehhh kind of. I don’t EVER want to relive what I went through. Ever. But I also don’t want to forget what it felt like, what it taught me, and the depths of emotion and compassion that I’ve found for those facing the same thing.
Most of the time I feel like I walked away from cancer with a fierce passion for living and understanding people and what makes them who they are. I’ve mended bridges with people I never dreamed to before cancer and these days, I tend to say things that I might not have said before cancer, both good, bad, and somewhat inappropriate and I’m good with that. Other times I feel like I lost parts of me that people relied on as steady constants and parts that helped them feel secure about my life on earth, and I don’t like it.
In processing where I stand in my journey now that the get-well, healing phase is pretty much over, there are bits of my heart that need sharing. Parts that have frustrated me, parts that have satisfied me, and parts that I just need you to try and understand. The things I wish I could look you all in the eyes and say.
So, here goes…
- I’m still the same Valerie
Acceptance is something I struggle with a good bit (just ask my husband how many conversations we’ve had on that topic), and this phase of the journey has been particularly hard for me. Whether it’s how many page views I get on this blog, how many people actually care to read what I write, how many followers I have on my related social media accounts, or how many people have chosen to take themselves out of my life for whatever reason, I’ve realized that people view you different during/after diagnosis than before when you were “normal.”
Yesterday evening, I attended UAB’s Head and Neck Survivor Support group we put on every other month. Pastor Malcolm Marler from pastoral care was the featured guest and one of the questions he asked us about acceptance and what that meant to us. Several of the other survivors spoke about what it took for them to find acceptance of the journey they’re on, but for me (being the youngest in the room by a longshot) the question struck me as more about the acceptance I feel from people now that I’m a “survivor.”
It’s true that I’ve found that some people are less understanding and accepting when it comes to seeing their friends in a different state than they’re used to seeing them in (and I’m not saying this is a conscious thought). It’s a situation that potentially makes them realize their own mortality, which was one of the hardest parts for me. At some point in all of our lives we will pass away. It’s a natural part of life but if you’re anything like me, I was happy assuming that I was going to live to be 80+ and just die of old age someday. And that’s still a pretty real possibility by the way. I indeed had cancer in my body, but that doesn’t mean I’m stepping foot into heaven any faster than anyone else. I’m still the same ole goofy, sarcastic, and ridiculous Valerie. I just had a different, slightly scarier detour to traverse than some.
- I didn’t choose this journey (and God didn’t either)
The more I learn about cancer and the perceptions that people have about it (general public as well as medical professionals) the more I want to wear a sign pimped out with flashing lights and my entire diagnosis and heart on it.
Someone once told me to “never try and understand cancer. It’s impossible.” And I still think those are wise words, but everyone tries. The instinct when a diagnosis comes is to figure out why and what you could have done to prevent it. I wanted to Google everything and figure out what my chances were and what might be coming, but Google simply isn’t God and doesn’t know (and thankfully my husband stopped me). Google is for sure a useful tool, but it’s one packed full of information and very little knowledge. It especially doesn’t know about my particular case, so I quickly learned that fighting my instincts and ditching the need for a “why” and relying on prayer and the plan that the Lord has for me, is a far better use of brain power.
There are a few things I do understand though. First of all, the Lord didn’t plan cancer for me, but it was never a surprise to Him. Was I mad at Him for a while that I had to go through it? A million times yes, but I Would. Not. Have. Made. It without His provision, His love when I was unlovable, and His absolute strength and mercy on my heart.
Secondly, I have strong feelings in my heart that this journey was given to me to bless others in some way that may be facing similar paths or others that have already been through cancer and haven’t dealth with the emotional side of it all yet. It’s why I continue to write words that may or may not be read. And it’s why I try my best to provide perspective and relateable words.
Lastly, my cancer wasn’t caused by anything specific. I don’t have HPV (human papillomavirus), I’ve never smoked, I’ve never been drunk (however I do enjoy a drink on occasion), and I live an extraordinarily lame life to be honest. It’s true I have a genetic mutation in my gene line, but there’s no solid proof that caused anything either. What’s the cause really matter anyway? The fact I had to go through it wouldn’t have miraculously disappeared just because I figured out why.
- I don’t need you to feel sorry for me. I need your compassion.
It is, indeed, saddening and often devasting when someone we know and love is diagnosed with cancer. There are moments in those times to cry, to mourn certain things (not necessarily the person), and times to lend a hand or heart and let them know you’re there for them and you care. Those needs are real and crucial. Alone is not a place you want to be through cancer.
When someone earns the title survivor after patient, the journey doesn’t end. They may have fewer doctors appointments, look healthier (or even like nothing happened), but fear of recurrence will always be real and scars and various other reminders will always be there to remind us that life got really scary at one point. This is why I will unapologetically tell you to ask how your friends and family are doing and not be scared of the hard answer they might give you.
Ask them about the hard times. Ask them about the ways life is still hard or what’s scary about the future still. There are plenty of people that won’t want to talk but it’s actually kind of therapeutic to talk about it. Most of all, just be a friend and listen. No one expects you to have answers or wisdom about whatever they tell you. They likely just need that feeling of understanding and acceptance…simple compassion.
So, cancer is confusing. Some days are still hard, even if it’s less than it used to be. Be a friend. Give grace. And be open.
Onward and upward.
The Appointment Process
After diagnosis, it’s hard to parse through the feelings of fog and fear and focus on what’s next. And honestly, sometimes you don’t even feel like thinking about what’s next, much less focusing on it. Treatment options will vary from case to case, but knowing the plan is comforting for some and, in my opinion, the more you know about how to care for yourself (or your loved one) during these times, the better. (PSA: I do NOT advise looking to Google for anything because I’ve done it and it’s miserable.)
Consultation
Your radiation consultation appointment will likely be sort of a recap of many of the things you already know, but it’s very important. Your radiation oncologist will review your recent health history, pathology, and possibly some prognosis details. They will also talk through your treatment options with you and let you know some of what to expect. This is a great appointment to ask questions that have come to mind since initial diagnosis. Your radiation oncologist will explain the treatment process with you and let you know how many treatments you have ahead of you.
Depending on your particular cancer, you may have a few “homework assignments” to complete before you come back for treatment also. For me since I was head and neck, I had to have a dental exam to make sure my teeth were healthy enough to endure radiation, and I also had to have a mouth piece made that I would wear during treatment.
Otherwise this appointment is one of the easier ones. It’s a sit and listen, ask a few questions type situation. Nothing scary so far.
Simulation
Simulation is a bit scary…or least that was my experience for various reasons. It all just became VERY real to me right then that I was, in fact, about to have cancer treatment. I work in radiation oncology, but somehow I had escaped seeing one of these crazy immobilization maks or if I had seen one I didn’t remember or didn’t know what it was. Regardless it happened and I survived it with somewhat minimal tears and it was on to the next.
From what I know, it is relatively common to have some sort of form made that your therapist will use to get you setup in the correct position each treatment, but not every disease site requires this.
For my simulation, they laid me back on a table similar to a treatment table. They showed me the mask materials beforehand and explained everything to me as much as they could. The mask in its original form is completely flat. It looked like a hard plastic, person-shaped frame with a net-looking flimsier plastic in the space between. The plastic would be heated up in order to make the material more malleable and it would then be placed across my face and buttoned down to the table until it cooled off and hardened. I could see fine, breathe fine, and could hear fine so I knew I was fine but that didn’t scare me any less. This process didn’t take long but hearing the snaps click into place and knowing you had to hold still underneath plastic was a little nervy…and I soon realized that I would have a similar experience each and every treatment.
But I don’t say any of that to scare you. Each person has a different experience. And not everyone gets a mask. I tell you because no one ever told me and going back to my previous statement, the more you know the better you might handle things.
The rest of the simulation appointment involved a quick CT scan with contrast and a few marked stickers to also help with treatment alignment. Consider the simulation as the dress rehearsal of it all…but don’t worry, you don’t have to perform in the days to come.
Treatment
Treatment itself was relatively simple. I would change into my gown, head to the machine, get situated with my mouth piece, warm blanket (sometimes), and my mask. At that point my therapists would exit the vault and move to their station where they could see me, talk to me, hear me, and work the machines. From that point on, it was my job to lie there realllllly still while they imaged me to make sure I was in the exact spot I was supposed to be in. and then treatment begins. After several treatments, you will probably start to memorize the exact movements and sounds that the machine makes, so you can gauge how much longer you have left during treatment. And for me, this made treatment pass by more quickly.
Each facility is different, so your treatment may or may not follow this same process but some elements will for sure be the same. Most of the time each treatment appointment will last generally the same amount of time and can also be scheduled around the same time of day each day. Your doctor will go over these details with you on your first day or before.
During my treatment, I kept a weekly journal on how things were going so that 1) my friends and family stayed updated and 2) to hopefully provide a resource for those facing treatment themselves or those who know someone who is.
Undertreat Visits and Follow-ups
Undertreat visits are the quick visits you will have with your radiation oncologist while you are under treatment. At UAB, I was seen by my RadOnc once a week for the 6 weeks I was having treatment. It was mainly for her to check and make sure all was going well and my symptoms/side effects were being managed. Things like weight, mobility, and general well-being will be looked at. Undertreats are typically on the same day each week and happen immediately following your treatment for the day.
Follow-ups are the appointments that you will go to after treatment is complete. Sometimes these appointments are accompanied by scans (MRIs or CTs) and sometimes they stand alone to check on your progress in healing and recovering. Your radiation oncologist might ask you questions about symptoms, skin and muscle tightness, and general mobility, and they also might ask you to perform simple tasks or movements depending on what your primary disease site was and where you were treated.
Other Info
Each person will obviously have a different experience with each of these phases of the journey. And you will find that some phases are easier than others whether that is physically, mentally, or emotionally. For more information, follow the links below:
Questions to ask your doctor (Before, during, and after treatment)
Radiation Treatment: Who’s on your care team?
It’s not surprising that a lot goes on behind the scenes of radiation therapy, and it’s definitely not surprising to you that there are many different people that have a hand in your care. With all the people that you see during your visits, there are just as many behind the scenes folks that have a role in what will happen from consult to continued follow-ups.
PLANNING TEAM
Dosimetrists
Dosimetrists are some of the first people to look at your case after your pathologist and doctor. These are the people that are eyeballs deep in graphs, formulas, and scans making sure that your treatment is planned correctly so that your treatment will target the most effective areas. Dosimetrists carefully calculate the dose of radiation you will receive and the daily machine settings/parameters.
Once they finish their work on your case, they pass the plan back to your radiation oncologist for their approval, and then your plan is ready to be put into action.
Radiation Physicists
It may sound strange for a physicist to be a part of your radiation oncology team, but they serve a very important role in the precision and accuracy of your treatment. Our physicists keep our radiation treatment machines properly calibrated each and every day by taking precise measurements of the radiation equipment output. They also ensure that the machines are delivering the precise dose of radiation during each and every treatment which is particularly important for patients that undergo daily radiation treatment.
TREATMENT TEAM
Certified Medical Assistants (CMAs)
CMAs are not a part of every care team but larger facilities tend to have someone in this role to help with patient flow. CMAs are the people on your care team that may perform duties similar to a nurse. They might take your vitals, ask you a variety of questions regarding your current and recent status, and get your ready to see the doctor.
Nurses
Your radiation therapy nurse is a registered nurse whose main job is to implement the plan of care your radiation oncologist has prescribed for you. Your nurse will be the one to administer medications and monitor any possible side effects or adverse reactions that you may experience during or after radiation treatment.
Radiation Therapists
You will see your radiation therapist every single day of your treatment. Your therapist will walk you to your treatment machine, get you setup in place, and make sure you are comfortable before leaving the room. But where are they going?
While you are on the treatment table, your radiation therapists are stationed nearby so they can monitor you and operate the machines. In many cases, they are taking quick images of your placement to make sure you are in the correct position so that the radiation will hit the correct spot, and they are also controlling the radiation. If anything were to happen mid-treatment, they can/will stop the machine and get to you as quickly as they can to make sure everything is ok. Once your treatment is complete, they will help you off the table and escort you back to the dressing/waiting areas.
In my experience, these people are angels (but don’t tell anyone else I said that.) My therapist talked to me, checked on me, and went above and beyond what they had to do to make sure I had a decent experience in the midst of a mess.
Radiation Oncologists (& Residents)
Radiation Oncologists are crucial to your care. They are the medical minds that oversee every bit of your radiation oncology care. They review your pathology, pinpoint the exact location(s) of the tumor or lesions on various scans, plan your dose of radiation and how many treatments you will have, manage your symptoms throughout your treatment, and do their best to ensure you get the best treatment and care you can, whether that’s curative or palliative treatment.
Your Radiation Oncologist should be skilled and very knowledgeable about the typical side effects, prognosis, standards of care, and research opportunities that might be available. They are the ones that you should direct your questions to at your visit, but it is important to understand that there are some questions that your doctor simply isn’t able to answer.
At many facilities, residents are a part of the radiation oncology team as well. Residents may visit your room first and ask you questions during an exam or they may enter the exam room with your regular physician. Throughout their residency, residents are often times observing and absorbing as much information about each patient and the appropriate care as they can as they move closer to graduation. You also might notice that depending how much time passes between your visits, there may be a different resident present for your visit than before. Residents rotate doctors so that they have a wide variety of experience by the time they finish their residency.
THE REST OF THE TEAM
Research Study Coordinators
Depending on whether or not your doctor recommends that you participate in a clinical trial, you may or may not interact with a study coordinator. These folks are the experts in the department on the clinical studies open in that practice, and will make sure each aspect of the study elements outside of standard of care treatment is taken care of. These will also be the people most likley to explain the study to you and call and check on you for follow-ups. These follow-ups may be in person at your regular visits or they may be a telephone call to see how you’re doing.
Social Services
Lastly, social workers are there specifically for you! Their purpose is to make sure you are taken care of and provide you with the tools to deal with emotional burdens you may experience and/or help with decision making strategies for your care. Social workers also typically have the ability to assist with more concrete needs including housing, transportation, finances, hopsice or home care, and other supportive resources.
1 year, 1 month, 9 days
Scan time has come and gone again. The time that is somehow capable of sending me into an oblivion of fear and unwanted thoughts that swish and swirl around in my mind until I feel like I’m trapped beneath the surface of the sea, drowning. And I know better than to let that happen. I know that the devil is going to use any and all tactics to invade my thoughts with fear and doubt, but y’all…I’ve still let it happen every time. Some times it’s a week before scan day and sometimes its just a few days before, but I’ve yet to show up to an MRI so far (and I’ve had 4 sets) without spending some amount of time losing my mind over the what ifs.
As with most things along the cancer/survivor journey, it’s hard to explain quite what scanxiety feels like enough for someone on the outside looking in to fully understand, but if you ask anyone that’s faced diagnostic or follow-up scans, they’ll all tell you the same.
This time always brings me back to reflection and feeling overwhelmed at the love, blessing, and support I’ve been afforded. From getting the job at UAB Radiation Oncology (with an English degree) to feeling the internal urgency to get Glanda checked on again after 7 years of undertermined scans, to having the strange instinct to ask one of our doctors to take a second look at my scans (Thank you, Lord), to having a completely benign diagnosis going into surgery, and then being able to be treated in my own department and able to work each and every day to some capacity all the way through treatment. And that’s truly only the tip of the iceberg. Blessings starting happening YEARS before any of this ever came about. But those seemingly normal events have been revealed as preparatory events that led me this exact moment. The Lord is so good!
This time around, we’re roughly 1 year, 1 month, and 9 days post-treatment. An MRI soft tissue of the head and neck was ordered per usual accompanied by an appointment with my radiation oncologist. Except things ended up being slightly backwards due to insurance complications. Typically I have scans at 7am followed immediately by my appointment where I find out if I’m still NED. But this time I had my appointment (physical exam) on Wednesday and my scans on Thursday morning at 7am…which means I had much longer to wait to find out if my scans were clear or not. Not to mention, at the time of my appointment we had yet to convince insurance that an MRI was necessary for my care.
I went home Thursday evening with no news and a foul attitude. By noon on Friday, I still hadn’t heard a peep about anything and my thoughts were starting to overtake me again. It NEVER takes that long to read the report. Ever. Were they trying to figure out how to tell me it was back? Were they unsure of what they were seeing? Were they seeing something totally new?
The radiologist had seen something. Something between C5 and C7.
I swallowed hard and continued to listen as my radiation oncolgist continued to explain what her impression was…underwhelmed. She didn’t see anything, except the inflammation in my spinal cord that we’ve known about for some time now, but she wanted specific confirmation from a specific radiologist who was out of town last week.
As we continue to wait for final confirmation, we are resting in the fact that no one saw anything scary on my scans, even though there was the mention of “something.” And we are choosing to believe that that news is going to hold. Until then, life shall march on…onward and upward.
9 Month Check-up
When three different people mentioned to me in the same day that you haven’t written on your blog much lately, I knew it was time I sit down and write all the stuff I’ve been neglecting to write over the last several weeks (or longer).
Life has been the most normal it has been lately since surgery day last year. I’ve also found myself quite thankful for something as dumb as distraction in my life. Ten girls from Samford University now call me Coach Val, and I spend many of my days dreaming about how I can build the program and teach and mentor them better. I never in my life dreamed that would be the case but these girls have taught me so much already about life as well as patience, and they’ve helped with that little word us “cancer patients/survivors” are always seeking…normal.
But while life continues to trod along steadily for the most part, I would be a total fraud if I led you to believe that every week is like that now. The weeks leading up to scans back in August (and even some days since then) were still absolutely terrifying. Scan week was still filled with complete irrationality and exaggerated thoughts, and as I usually do, I rode that familiar emotional roller coaster and even steered right off the tracks a few times, but I managed to get realigned and return to a smoother ride shorty after…thanks to K.T. and the Lord’s undeserving grace.
I’ve continued to work really, really hard on my thought-life because it’s still what tears me down the quickest and with the strongest intensity. And with plans to vacation with my in-laws the week before scans, I continuously said that I wished that that beach trip was coming after scans instead of before so I could relax mentally. But it wasn’t, and now I know why.
We sat on the shoreline that week talking and thinking about life. (Y’all know I love nostalgia and introspective thinking.) We discussed the intricacies of the Lord’s beautiful creation He’s given us and how the waves sparkle just right when the sun hits them. We dug our fingers and toes in the sand and let the grains pour back down delicately. And we talked about the life we’ve lived together and the dreams we have of the life we hope to have ahead of us.
After conversation subsided for a bit, my hands gripped the sides of Joyce Meyer’s Battlefield of the Mind. It’s a book that I had pulled off my shelf to read many times before but had just never gotten into. It never felt right. But this time…this time the words settled in deep and washed over me just like the tide at my feet. In the sweetest way, I felt the Lord tell me to let go. He gently reminded me that in all my moments of fear and anxiety as well as reasoning with myself I had done since the day of diagnosis and before, I hadn’t gotten anywhere. The fear wasn’t gone and I never, ever found the reasons I wanted. All I was doing was exalting my own thoughts above the Lord’s sovereign plans and acting like I could run my life better. That one hurt.
How simple, right? Just “let go”…nope. How difficult?! I find myself down right pissed in these moments feeling like what I’m supposed to do is actually impossible (mostly with my health and thoughts) and then I come around to realize it’s probably my selfish pride making me feel that way. That one hurt too, but when it comes down to it, I can absolutely fight the fear and the anxiety and quit trying to figure everything out. It’s just going to take time. As it’s taken time for my body to heal, it will take time for my mind to as well. Cancer is NOT nice.
On the other side of things, I think about how precious it would be to hear those sweet words, “everything still looks good” from my doctor when I return for checkups. It’s an unmatched, indescribable feeling that I often dream about until it isn’t a dream any longer.
This time on August 8th, the Good Lord allowed it to go from dream to reality and let me hear those words once again through my doctor in His still calm voice. Clear scans after 9 long months since treatment ended. I’ve definitely had my share of post-treatment struggles and also my share of unexpected doctor’s appointments, but all those seems to drift away into the periphery in these truthful moments of knowing my body is healthy (and these days, healthy means “without cancer”).
This round also delivered an extra bit of news we are pretty excited about…the blessing from my doctors to make baby Powells whenever we get ready! (Side note: We were advised to wait since my frequent scans could transmit radiation to a baby if we were to get pregnant before this first year of surveillance was up).
As I sit here polishing off a post that I’ve been working on since the week after my August scans, I find myself filled with giddy excitement and the confidence that I’m a healthy almost 30 year old woman of child bearing potential. (It almost feels like I’m back where I thought I was before all this happened last year and last year I NEVER thought I’d get here again). I wake up most days with the joy in my heart that life is normal again, numb arms and all, and I’m thankful I still get to have an impact on patients that come through our clinic and hopefully through my writing a bit.
So, while this is a post that may seem somewhat nonchalant, there so much more than what you’ve seen to get me here. Only Jesus and my husband know how hard I’ve fought for the status so many take for granted…normal. I think I’ll hang on to that one for a while.
Onward and upward.
The Cancer Never Leaves
I read an article yesterday on surviving suvivorship, and it struck a chord in me…several actually. The title grabbed me because of the notion that survivorship might not be the walk in the park that it seems to have the reputation for. The article is a short interview with a woman, a mental health counselor, that has fought cancer and her perspective navigating life after cancer.
I’ve thought about what it means to be a survivor so many days since diagnosis, and wondered if I would ever forget about cancer. The short answer is “no” but it’s way more complicated than a simple no. I’ve thought about if I even wanted to be labeled a “survivor.” Maybe I just wanted to be Valerie, or maybe I just wanted to live like normal. But the facts are different. When you have cancer and you make it past the moment they confirm your diagnosis, the label “survivor” gets smacked to your forehead with superglue. Can’t. Take. It off.
Cancer never leaves you. It comes unwelcomed, it’s treated (cured in some cases) and then you spend the rest of your days and years thinking about it. It never leaves. It never goes home. Never goes back where it came from. It settles in, and it’s content to invade the privacy of your mind each day.
I think the perception that once you hit that sought after stage of “remission” or once you finish treatment that people assume you’re good. The expectation is often that you’ll bounce back to whatever normal used to be and keep going like nothing ever happened. So in an effort to change the perspective and echo and add on to what Ms. Barbara Abernathy stated so well, here are a few things I wish I could tell you.
1) The “Chronic disease” Barbara refers to is fear and residual symptoms
It’s not unusual for folks diagnosed with cancer to come out on the “cured” side with more symptoms than they had going into treatment. Don’t for a minute think that the vices used to straight-up kill cancer aren’t going to affect the rest of you, too. I will be the first to tell you that surgery and radiation cured me, but at 9 months out I’m facing daily symptoms that may be with me forever because of those treatments I chose to have. And I would do it all over again.
Barbara talks about the 80 lb backpack she puts on each day in her article, and I envision that backpack filled to the brim with symptoms, thoughts, emotions, burdens we feel like we’re placing on others, and just the weight of knowing what we have to do mentally and physically to get through the day. Some people’s backpacks weigh more than others and some days we get to put the backpack down a few times during the day, but it goes home with us regardless.
So be gracious when some days seem harder than others and you try to remind us we’re survivors. We may have survived all the days before, but today we’re still working on it. I can be fine one day, and really need to talk out my thoughts and feelings the next day (or even hour). And it’s not all bad, but it is indeed a pilgrimage, a journey, and adventure, and a process.
2) Listen and ask questions.
We know you don’t want to. We know it’s hard to hear about what your loved one or friend is dealing with. And we know it’s hard to think about the day we might not survive anymore. We get it. But we need to talk about those things too.
Cancer has blown the doors wide open in medical research and treatment options, but in social and personal situations it still seems somewhat taboo. The conversations rarely get past, “How ya doing? Ya good?” and from our side of the fence, there’s a decent chance that we need to talk but don’t know how much you can handle or even care to hear about. And we certainly don’t want to burden you with our issues so we smile and say we’re good and talk about how blessed we are to still be alive and well despite the struggles.
We typically know our people we can talk to but sometimes it’s nice for someone to surprise us and say “How are you really feeling? Are you dealing with anything in particular right now? What’s your scariest thought you live with?” Those moments mean so much. Promise. And the answers will surely be something you don’t expect. But just as we’re learning a new life after cancer, it gives you the opportunity to peer deeper into our lives and maybe shed some light, prayer, or a simple truth with us about what we’re dealing with. Just don’t give us the “oh, but you’re a survivor” talk. Surviving is still hard!
3) Cancer makes you grow up…FAST!
This is a heavy one (if cancer isn’t heavy enough already). I will never forget the moment I realized I was, in fact, mortal after they told me Glanda had cancer in her. As silly as that sounds, the thought never crossed my mind before then and up until that point I was living life with no expectation of death, harm, disease, health concerns, etc. Nothing. I was fat, dumb, and happy for lack of a better saying. But when I started processing what it meant that my body had produced cancer cells, all I could focus on for a while was that I was going to die and it very well could be from cancer. Reality hadn’t changed from the moment before. Not to be too morbid, but dying was always a possibility, but it was never one I ever seriously considered. I was always going to (and probably still will) live until I’m old and wrinkly with my grandkiddos running circles around me.
Cancer matured me. It made me think about reality in a different and uncomfortable way, but let me tell you, I enjoy the simple, dumb stuff so much more these days. I have no shame in acting ridiculous in public, dancing when the groove hits me, singing out of tune, sharing what makes me happy, writing whats on my heart, and loving my people hard as heck even when it’s annoying. Don’t care. Because life is temporary folks, and this is the only one I’ve got.
So don’t shame people who have walked this journey for being bold. Don’t be embarrassed by my shenanigans (unless they’re offensive, and then please tell me). But join in sometime. Share in the crazy. Let loose a little. It’s actually kind of fun. You only live once. Yeah, I said it.
Cancer is truly just one of those things that you don’t understand unless you’ve walked it yourself and even then, each person has a different experience. But I so want to bridge the gap and start to eliminate the social awkwardness that seemingly surrounds us “survivors” as we’re named. I cant help but believe that it would help us live and not just survive our survivorship.
Preparing for Radiation Treatment
Starting radiation therapy is certainly intimidating. There are a lot of unknowns, a lot of fears, and a lot of what ifs that come up, but with the a healthy understanding about what to expect, many of those fears can be eased and your journey through radiation might be slightly better.
I’m not sure there’s anyone that goes into day one (or even consultation) thinking that the journey won’t change things.
Things will inevitably change.
Life has already changed tremendously with diagnosis, but changes will also come as you prepare for treatment, begin treatment, and as you power through each and every radiation appointment. These don’t all have to be negative changes though.
While it’s hard to pick out a multitude of positive changes that take place (because cancer just isn’t fun), I’ve picked out 5 things that absolutely, without a doubt carried me through with far more success than I might have had otherwise.
Drink plenty of water
Hydration is important always. Our bodies are made up of mostly water and they’re also good at telling us when we haven’t had enough water, which is helpful if we listen.
As radiation passes through your skin each day, your skin will begin dry out, get irritated, and likely become very uncomfortable. While moisturizing the surface is crucial (which we’ll get to next), moisturizing the inside is JUST as important. Your body needs the lubrication to continue to function at the highest level it can, so drink all the clear liquids you can. The cool water will probably feel good going down anyway!
Stock up on protein
Did you know that protein is the nutrient that rebuilds the cells in your body? Radiation’s sole purpose is to destroy cells, specifically the bad ones, but it will inevitably destroy some of the good ones too as it makes its way to the tumor location. Since this is the case, you’ll want to ingest foods high in protein throughout treatment so that your body has a little extra help with rebuilding healthy cells along the way.
For head and neck patients (like me) you might find that eating is much harder than usual, and it will be a mental struggle as well as a physical struggle. Things won’t taste right, your mouth will burn, and the taste in your mouth in general can be unappetizing. You won’t want to eat, but it’s so important to push through and make yourself continue to swallow. Remember, the pain is often temporary, but losing the ability to swallow is less temporary (in most cases).
So if eating will be difficult and unappealing, where do you even start with nourishing your body? I had a particularly rough time with losing my taste and eventually the sores and irritation in my mouth, but I survived on scrambled eggs, high-protein spaghetti noodles, and Carnation Instant Breakfast. These are the main food items I found that didn’t burn my tongue, didn’t have overwhelming flavors, and still provided the nutrients my body needed to make it through. I also ate a lot of tomato soup which burned like fire, but it tasted the most like food so I ate it on repeat!
Really, whatever you can find that gives you calories and protein is perfect! Stuff it in and swallow it down. You’ll be thankful later on.
Get plenty of rest
With radiation, you run out of steam FAST, so if I could do it again I would sit my rear on the couch and take a zillion naps the week before I started treatment. This was the first side effect I noticed and it was one of the last to subside too.
I also chose to work every day throughout my treatment which I 100% think helped my mental status. Having something to do served as a nice distraction for me but I was a total sloth while I was there. Keep in mind that treatment and work were one in the same for me so don’t feel bad if you’re not up to working, but outside of work…sleep, sleep, sleep. Then nap, and repeat.
Towards the end when my skin was uncomfortable, I had a harder time sleeping through the whole night and I would wake up hungry because I wasn’t getting my normal caloric intake that I was used to. So the extra sleep I afforded myself during the day was so valuable.
Moisturize, moisturize, moisturize
If you’ve followed along with any of my blogs you know I harp on this one quite a bit. But keeping your skin soft and supple leading up to radiation, throughout radiation, and after radiation is crucial to your healing and the wear and tear your skin will experience.
The greasier the better is the rule and if you didn’t have to go through chemo and your hair is long enough to stick to your neck, prepare to get well-acquainted with your hair in a ponytail and daily washes.
Preparing your skin ahead of time will set you ahead with your routine once radiation begins and you start experiencing the expected skin toxicity. It will feel like (and kind of look like) a sunburn but creams, ointments, and lotions should be the goo of choice rather than aloe or gels that dry and get sticky. I promise, dry and sticky will not be pleasant in this scenario. So lube up and get used to feeling goopy in that area for a little while. Healing takes time.
Stay as active as you can
This one seems somewhat contradictory to that part about making sure you get enough rest, but there is certainly a balance. You want to make sure you are keeping yourself active enough to maintain muscle strength and healthy body function, but you also don’t want to push yourself to where you don’t feel like doing anything. Consistency is key and will also be important throughout treatment as well, even if you have to alter what that means a bit during treatment. The main goal here is to do what you feel like doing and do what you enjoy!
Onward and upward, friends!
Gone, Glanda, Gone 