Friday Frustrations
Hands down, hardest week since the path results came back.
Nothing is wrong. Everything has just bubbled up and overflowed again this week as I shoved myself through 4 different appointments…all for this dumb cancer stuff.
- Radiation Oncology consult with Dr. Spencer
- Dental appointment to get cleared for radiation
- Another dental appointment to get molds made for my mouth piece I’ll wear during radiation
- Chest CT scan
I wrote the beginning of that post early Friday morning before Friday afternoon came. And all of the above is still true, but Friday afternoon brought some rather frustrating news.
I had known since Monday afternoon at my consultation that they had ordered a chest CT. ACC often spreads to lung or bone if it is going to metastasize, so this is just normal precaution as standard of care. So I scheduled my scan for Friday and went about my week.
Multiple indeterminate mm sized spots showed with a possibility of metastases due to prior diagnosis of malignancy. Heart. Sank.
So before anyone gets scared, this doesn’t mean lung metastases and it also doesnt mean lung cancer that is most generally known. This report only means there is a potential of metastases due to the fact they just took cancer out of my body a little over a month ago. Without knowledge of Glanda’s histology, this radiologist may have never read my scan this way.
Thankfully Dr. Spencer was in clinic that day and came out of her last appointment, read my results, and came to chat in my office. Yes, there is something visible on the scan…a very tiny something…like grain of sand tiny. Also, she said she is 90+% sure that it’s nothing and coming from a radiation oncologist of many, many years, that’s dang good odds. Apparently living in the south grants you a few things here and there that are not normal but totally normal here and this is one of them. To be sure, she’s ordered a PET scan which will light up any abnormal cells (or abby normal for my Young Frankenstein fans) and confirm that those things no longer exist in my body.
Understandably so (I think) I welled up with tears and just couldn’t choke them down this time. It had been the worst and most tiring week. It had been nearly a month since we faced cancer head on and this week had brought up so many thoughts and emotions that I honestly could go the rest of my life without thinking or feeling again. I wasnt even mad that I had a chest CT or that the results didn’t come back squeaky clean like I had imagined. And I wasnt scared that something else could be wrong. I was just plain frustrated.
I knew my original 7 year old tumor was comprised of less than 10% cancer cells. I knew that my cancer hadn’t even spread to lymph nodes outside of my salivary gland. And it was more than likely shown in the lymph node that Glanda was pressing on only because they were literally pushing against each other.
I also knew that I have been feeling better than I have in years since we said goodbye to Glanda. Not to mention, I danced for 2 hours last week and did way better than expected being only 6 weeks out from surgery…and I’m talking about my dance ability not my lung capacity. Lungs are and were perfect. How on EARTH could anything else even possibly be wrong? It. Just. Doesn’t make sense.
Friday afternoon ended with a sweet blessing though. Coworkers that consoled me, continuously handed me tissues, and prayed over me, before walking with me to the bus while simultaneous distracting me of anything that had gone on within the last hour so I could make it to my car. Anyone that knows enough about my last few jobs knows this is an absolutely incredible and unexplainable blessing to me.
So here we are, another week out and a PET scan facing us soon. Part of me is excited to slap cancer (or the lack of) in the face once and for all and bulldoze straight through radiation like a champ. And part of me is scared that this PET scan is going to show something crazy and light up something abnormal that wasnt even on our radar as a concern. What I’m absolutely sure of is that whatever the PET shows, it’s going to be ok and I understand that the results are part of God’s will that we don’t have to understand.
One of my favorite things I’ve heard spoken over us lately is that we have to put more trust in the Lord and His healing rather than putting trust in what the reports are saying. Sovereignty > Science. I’ve picked a verse to carry me through the next six weeks of radiation specifically and also the next several years of inevitable checkups.
“Now glory be to God, who by his mighty power at work within us is able to do far more than we would ever dare to ask or even dream of—infinitely beyond our highest prayers, desires, thoughts, or hopes.” ~Ephesians 3:20
Yes and amen. It’s harvest season. Onward and upward.
Radiation Consultation
This whole cancer thing has kind of been swept under the rug for the last few weeks as life settled back into some sort of normalcy after the path report had come back. But as you can imagine, so much of what we have come to terms with resurfaced today as we talked through the days to come with my radiation oncologist. Those appointments are never fun, but the more days that pass the more thankful I am that I work in the department and I am used to seeing and hearing the beautiful struggles that often accompany radiation therapy (RT).
I’ve been so filled with joy lately, even today as I knew my consult with Dr. Spencer was this afternoon and things were about to get real. I so vividly remember laying in our bed just days after we found out it was cancerous, and asking KT if i would ever have joy again. I seriously thought the light in my eyes may never return and the fog of disease would never leave my brain. And at this point, as I laugh at the same dumb stuff I used to all the time and as I enjoy the days as they pass more slowly now, I can’t find any other explanation for the peace in my heart other than the Lord, whom has given me so much evidence through so many different people and places that this is, in fact, another season. And this too shall pass.
But first…radiation awaits me. So a few quick facts about what lies ahead:
- Dentist visits: Because saliva production tends to decrease with head and neck radiation therapy, your teeth are more prone to cavities. Therefore, I get to get my teeth cleaned every 3-4 months.
- Fluoride trays: Similar reasoning as above, but this is to help with maintaining a healthy dental condition through the years. Lord knows we don’t need my teeth falling out.
- A mouth piece: This is something specific to treatment and will be used to keep my tongue pressed to the right as RT is given. This helps with lessening the potentially damaging effects to healthy surrounding tissue that radiation presents sometimes. I do, in fact, need my tongue for eating so I’m totally fine with this new piece of hardware I get to add to my collection.
- A mask: It won’t be green like Jim Carey’s and probably wont be scary even though Halloween is coming up, but it will keep my head stabilized as treatment is delivered so that precision is ensured.
- Side effects: This wasn’t my favorite conversation to have but before I even tell you what they are, please pray they are minimal or even non-existent. Im totally accepting of being a miracle child through this. Ok so…
- Deep cheek pain since they will be chasing the nerve in treatment. My tumor was plastered onto my facial nerve and since Dr. Carroll didn’t sacrifice any of my facial nerve they have to assume there was perineurial invasion. There is nothing that says there are still any cells in my nerve but thats the whole point of this treatment is to make sure there isn’t and wont be in the future. Basically my nerve will be irritated and hurt.
- Sore throat. This isn’t the actual symptom but many patients have described the sensation as this. Your throat is obviously very close to where Glanda’s former home is so it’s no surprise that my throat would be somewhat affected. Nothing some chloraseptic numbing spray can’t fix…I hope.
- Loss of taste. Apparently the way things taste will begin to change towards the end of week two of treatment. Taste will come back starting around a month after treatment ends and return to normal around 6 months post RT.
- Loss of appetite. So with the above combined, Dr. Spencer said many patients struggle and have no desire to eat which is where the real struggle starts with lack of nutrition and dehydration. Im pretty much going to shove food down my throat and have advised many friends and family so far to do the same. This is NOT like the zoo…please feed this animal!
- Skin irritation. This is the one most people associate with RT but actually the last to show up. This might feel like a sunburn (which im totally used to since I’m as pale as they come) but I hear our techs and nurses have some secret sauce that is basically magic for this part of the process.
- Fatigue. Sooo many naps are in my future, and this is the one I can get down with. I love bed.
- 60 gy/30 fx (In human terms, thats 60 grays of radiation at 30 fractions/treatments. Roughly 6.5 weeks M-F.)
- The steady death of any and all cancer cells that may still be hiding out. Remember this is preventative treatment, so this doesn’t mean that there is still any in there, but that the possibility is there so we’re going to nuke them….with radiation.
Also things to note which I was super excited to hear today:
- The solid mass of my tumor was 2.7cm in diameter, however, it was only 10% cancerous cells.
- They took 3 lymph nodes during surgery and we knew one of them had a trace of cancer in it, but it was the one they took that was right up against Glanda in my salivary gland, and the other two were outside of the gland and were completely clean. (KT said he’s known that the whole time but I missed that detail so i was supper excited to hear that today)
- My tumor was considered T2N0 for all my medical folks which basically means stage 2, no spread to regional nodes.
- Little tiny Powells can and will happen…Lord willing! 🙂
Now that we’re fully educated and trained up, we’re ready to bulldoze through this and come out on the other side better, stronger, closer, and more thankful than we’ve ever been before. I don’t even say that to talk myself into what I hope will happen. I truly believe God has given us this opportunity to clean out the danger that lived in my body and to make me whole again in His perfect way so that my life will be long and healthy as the Lord intended from His very first thought of me.
I don’t have a doubt in my mind that everything is going to be ok, and I don’t want anyone else to either. Yes, cancer can be scary but today’s technology and medicine is truly amazing and evolving every day. The intelligence that surrounds us in the world is impeccable and something to marvel at. I’m just thankful I get to share my journey with even one person that may find hope in our story.
We hope you’ll pray alongside us for continued healing and absence of disease. Please pray that side effects will be minimal and that my little neck and cheek will respond perfectly to radiation treatment and that cancer will never be spoken over me ever again. There is no immediate concern about anything and I will be watched like a hawk for several years, but this mess is not one I want to do twice.
As always, thankful for you, for reading, for caring, for praying, and for just being a part of our lives.
Six Flags Over Glanda
Some days are harder than others. I have the blessing of living knowing that I’m ok and going to be ok for a long time and most days I wake up and go about my day with absolute normalcy. Honestly, a normalcy I questioned that I would ever have again during my first few days after learning I had cancer. However, there are just those days where I’m overwhelmed with thoughts and swimming in a sea of questions I will never know the answers to. Some days the lack of answers lingers and makes me feel like something is wrong again, and it takes some talking to before I get my mind straight again.
But while my faith is always in Jesus and my spirits are high because of the peace in my heart, this road has not and will not be easy. I have cried more tears than I care to admit and my thoughts have been darker than I thought I was capable of. I wont tell you I didn’t doubt or question the Lord through this either. When you go into a major surgery thinking your perfectly fine and come out with the news of cancer, your ground shakes just enough to make you question how you are ever going to be able to trust anything you’re told medically again.
That’s only a small sample of the fear and dread that bumped into my skull a few times, but the Lord found a way to give me peace in even the hardest of moments even if it meant He had to shout and wave around like a fool to get my attention. So these days ahead will be long. I will be tired. And I will be up, and I will be down. But I know I’m healthy and I’m healed, and today…that’s all I need.
How It Healed
WARNING: GRAPHIC IMAGES
For some crazy reason, I thought surgery wouldn’t be a big deal and the first week of recovery would be a little tough and then the next week would be more like a staycation at home while they made sure everything was going to stay where they put it during the procedure. Well, I was wrong.
Two weeks was just long enough to get me showering by myself, walking more than from the bedroom to the backyard and back, and learning to dry my hair without scorching my ear (since its numb) and the fresh wounds I have on my face
Anyway, it was a much longer process than anticipated, but lucky for you I documented it in true Poco-fashion. Pictures of everything…every day!
So here it is…how Goneda healed day by day.
July 6, 2017: Fresh out of the operating room. The JP drain is draining fluid from the area to prevent swelling and infection
Path Results Are for Peace
No matter what comes back in a path result…there’s a certain peace that comes over you when you finally know what it is. Good or bad…you have answers and with answers comes peace.
Call me crazy, but the moment I heard Dr. Carroll say “it was malignant” was one of the more peaceful moments I experienced through all of this. The moments leading up and the days after were a different story along with the days afterwards. I so wish I would have chronicled those times, but I was honestly too afraid of what might come out. I still don’t like to sit too long thinking about those days in fear that I might feel those feelings again.
Our generation is so closely tied with our parents generation where hearing the word “cancer” means you’re going to die. So in the days of waiting and the hours following the results, all I could envision was myself in a hospital bed with no strength and no will do anything. I basically just saw myself withering away and just wanting it to end so I didn’t have to watch my family hurt and suffer at the thought of me not being around anymore. I understand those are morbid and quite scary thoughts, but it took me days to understand that was not the reality of my circumstances. It took me days to realize that my body was healthy (other than healing up from major neck surgery) and that I was (Lord willing) still going to get to experience pregnancy, childbirth, birthdays, marriage anniversaries, a career and all of the other things I’ve been dreaming up for the last 28 years.
I was flooded with questions in my head like why did a CT, and MRI, and a needle biopsy all confirm that my tumor was benign when it was in fact cancerous? Why was this happening to me at 28 when I’ve barely been married 2.5 years, when we had been thinking about starting a family, and only 2 years after Mom had been diagnosed? Why had no one paid more attention to this knot in my neck for the last 7 years since it had shown up?
You get the idea. I was a mess. But the more I thought and the more I cleansed my soul with tears, the more the Lord reassured me that its supposed to be that way. I was supposed to go into surgery knowing it was benign because my little heart couldn’t have handled going into surgery knowing that I had let something dangerous live inside of me for that long. He knew I needed the excitement of getting it out to carry me into that operating room with peace and a feeling of security.
And so what we’ve only been married 2.5 years. A lifetime with him wouldn’t be enough, so no matter how long the Lord gives us together, it will never feel like long enough but each day is more than enough to get me through the hard times and to make me feel loved in a way I never thought was possible just 5 years ago. As I sobbed uncontrollably, he held me close and found a way to make me smile through my tears. When I asked desperate questions, he gave me answers that only the Lord could have spoken through him. And when I struggled to find the strength to get out of the bed or off the couch as I existed in the darkest fog I’ve ever known, he picked me up and steadied me until I could walk to our swing in the back yard for some fresh air which I desperately needed. He bathed me, told me I was beautiful every single day, and he was simply my angel.
I’ve also bragged on my mom for her strength and her determination through he treatments the last few years and I’ve said I admire her because I don’t know what I would ever do if those words were spoken to me. It’s truly amazing what the Lord prepares you for. Watching Mom power through everything she did has given me strength on so many days to know that I can too, and I thankfully don’t have to face half of what she did. I will admit I was mad at God that our family was being faced with this again, but I also have peace in my heart that the Lord allowed me to be Mom’s right hand girl through her treatments and that He brought her through it happy and healthy so that she could be there for me through mine. How could I continue to be mad at God knowing He healed my mom for many reasons, but in this moment He healed her so she can be part of my comfort on Earth.
So yes, path results are for peace. Mine scared me quite a bit, but knowing is less scary than the unknown, and it gives you the opportunity to attack whatever you’re facing with appropriate action and feel good about it. I’ve made it to a place of peace. Back to the immediate peace I felt when I heard from Dr. Carroll but also more of a settled peace. A peace knowing the Lord has me and I’m going to be perfectly ok. Thank you, Jesus!
The Road to RadOnc
I graduated from Auburn in 2011 with a B.A in English with an unstoppable love for words and writing. I soon dove into the web world and learned more about design, programming, and the interworkings of a website than I ever thought I could. My next adventure would involve flowers and some pretty wonderful floral designers that I was more than blessed to spend some time with and learn alongside, but the daily life in Flower world was less than desirable to say the least (except for my girl Marigold).
With that being said, I started planning my escape route. K.T. and I planned to watch the national championship game with friends and since my beloved Auburn tigers weren’t participating, I was job searching. By halftime, I had sent my resume to our friend sitting next to me who had heard about a job opening earlier that day in her department. Worth a shot. So 3 visits to UAB, 7 interviews, and an offer letter later…Boom. Program Coordinator in the research Department of Radiation Oncology (also known as RadOnc). At this point it is important to point out that my experience was in websites, and I was soon to be reading clinical trial protocols and making sure everything was in line and everyone was out of trouble. Um, hello Jesus.
Seems like a short enough story that it wouldn’t need it’s own post, but there’s another story line that coincides with all of this.
Back in 2009, all of the Halloween candy I had stolen from my brother for years had caught up with me and I got my first cavity. It wasn’t long after my cavity was filled that I noticed a tiny little nodule near the hook of my jaw that hadn’t been there before but felt like it could have been due to the several novocaine shots it took to numb me up at the dentist. It wasn’t, but when it lingered around too long and it became a little tender, we called in the doctor. CT scan #1 led to 2 super confused ENTs and zero answers.
Skip ahead to 2015: Marriage in March, Mom’s breast cancer diagnosis in July, and CT scan #2 in October. I figured after Mom’s diagnosis and the fact this little nodule had obviously gotten angrier in size and tenderness I should check on things again. The conclusion was that I had an extra piece in my parotid gland and I was advised to go about my business as usual. While they basically told me I was “special,” I was perfectly fine hearing that I was fine since Mom was starting a haul of chemo and radiation for the next 6-8 months and I needed to be there for her 100%.
After I landed the job at UAB Radiation Oncology, I obviously started reading A LOT of oncology protocols and (not so ironically) the first protocol that I was handed to review was a salivary gland tumor study. By the end of April, I had scheduled yet another CT scan to check on Glanda the bad witch. Inconclusive. Next was an MRI because I was demanding answers at this point. Inconclusive.
Out of frustration, I emailed one of our radiation oncologist here and explained that two ENTs at Grandview were unable to figure out what it was and I asked if he could take a look at my scans. Moments later I was in our scheduling office making an appointment with the chairman of the Otolaryngology department at Kirklin. Not because he saw something scary, but because he wanted to make sure and put me in the hands of someone that would know for sure so I could have some peace.
In the meantime, the ENT’s at Grandview had also done a fine needle aspiration and path results concluded that what I had was a pleomorphic adenoma, a rather common benign salivary gland tumor. Awesome. I collected my slides from the lab, brought them back with me to UAB, and scheduled surgery about a month out after Dr. Carroll said he would remove it not matter what if it were his family member.
While this is actually the story of how we slowly but surely we realized Glanda needed to die, but it’s also the road that led me to the career I never knew I needed. The career move that saved my life.
Goodbye Glanda
July 6th @ 6:30am: Arrive at UAB hospital for surgery.
I basically skipped into the hospital. I am by no means a morning person so the fact that I was even walking at this hour is a miracle. I was having a parotidectomy for a benign mass in my left salivary gland (Glanda) as confirmed by a CT scan, an MRI, and a fine needle aspiration previously done in May as well as several scans done in years past leading up to this point. The incision would run from the top of my ear (on the cheek side) all the way down and curl up around my earlobe, down through my hairline, and down my neck like a hook.
Glanda had always been a bit bothersome as she was tender to touch and she was positioned just right so if I turned my head the right way, layed on her funny, or hugged someone on that side, I could feel her and it wasn’t totally pleasant. I also experienced what’s referred to as first-bite syndrome which means I would feel tinges of pain through my cheek and jaw on the first bite of food or a new flavor. However, since none of my pain was ever constant and it wasn’t unbearable, there was no malignancy suspected.
Pre-op they gave me a new blue dress, a matching hairnet, and some rubber ducky yellow socks with grips on the top AND bottom in case surgery went awry and I was forced to walk on the tops of my feet after surgery. Jk. I still walk normally. The usual folks stopped by to prep me and my family kissed me, told me they loved me forever, and gave my gurney an extra push down the hall to hopefully speed up the time that would pass before they saw me again.
4 hours later.
Surgery went as planned. My tumor was relatively marble shaped and scooped out whole. It ended up being plastered to my facial nerve and had to be peeled away, however, there wasn’t any disruption in the function of the nerve itself which is an unexplainable blessing. Parotidectomies usually come with some temporary facial paralysis due to the involvement of the facial nerve so if you happen to notice my face looks different for a little while, try not to laugh. Actually, my pucker looks ridiculous and I give you permission to giggle a little. I’ve also been practicing my whistle.
I had packed for vacation so I was expecting to win a stay in Hotel UAB West Pavilion and I have to say I was quite pleased with my corner penthouse suite I was awarded complete with a husband, mom, dad, brother, and mother-in-law. The only unfortunate part was that I wasn’t hilarious like I was when I got my wisdom teeth out that one time.
So actually there was one more unfortunate part. Dr. Carroll did his rounds around 6:30pm and was quick to share with me that my tumor looked “fishy” and that it had some indications of malignancy. Path straight up didn’t know what it was at the time, so we really didn’t have any other option except to get our on our faces and pray and know that whatever it was, the Lord was already before us as well as with us in these moments. I think I knew the moment Dr. Carroll looked me in the eye and expressed his concerns. And the vision of my family’s dry eyes circled around my bed absolutely haunts me and gives me the sweetest peace at the same time.
The family started to trickle out and my brother was the last to hang around and hug my neck before it was just KT and me. It wasn’t long before KT crawled up in the hospital bed with me and put his head on my shoulder and shared that the family knew that there was a chance of malignancy before I was even taken to recovery (which explains the dry eyes). In the days to come I did everything I could to talk myself out of the fact that there was any chance that Glanda was meaner than I thought she was. I told everyone we talked to that I really felt like it wasn’t anything and I was going to be fine. And both of those things are true.
The Lord carried me and my family through surgery, waiting, and many doubts and fears. He gave us rest and led us to green pastures and quiet waters so that we were refreshed even though we were weary. He gave us peace in hard moments and wiped tears from our eyes when our mouths couldn’t speak the words our hearts wanted to say. And He made dang sure that Glanda was removed from my body in just the right timing. Praise the Lord, y’all…Glanda is Goneda!
Gone, Glanda, Gone 