Sharing about my journey to my diagnosis.
Hello.
May 26th was my 34th birthday.
I often forget my age now that I’m past 30 years old. Something about being older than 30 makes me want to just throw my hands in the air because I can’t distinguish these years. We currently have three kids under the age of 5 and it’s been a whirlwind of a time. Not much sleep for me in the past 6 years, but I wouldn’t trade these “baby years” for anything.
I now have a new life marker. At age 33, I got cancer. It’s a big year for that reason. I lived 33 years without thinking much about cancer, that’s for sure. And now? I move forward in a new part of my life that includes healing from cancer. In many ways, I feel like a gun went-off signaling a new race on the date of my cancer diagnosis, March 17, 2022. It was a wake-up call, and my life hasn’t been the same since.
Lately, I’ve been putting my mind through a fun little exercise. I say “fun” … and since you can’t hear my sarcasm through this blog… I’ll have to tell you quite literally I mean no fun at all. Are you familiar with the “why me?” spiral? For me, it goes a little something like this:
– The world population is 7.87 billion.
– There were an estimated 18.1 million cancer cases in 2020.
– Of these, 9.3 million cases were in men and 8.8 million in women.
– Worldwide, an estimated 586,202 people were diagnosed with thyroid cancer in 2020.
– This year, an estimated 43,800 adults (11,860 men and 31,940 women) in the United States will be diagnosed with thyroid cancer.
– Papillary thyroid carcinoma (PTC) is the most common variety of thyroid cancer (70%-80% of cases).
– Most patients with thyroid cancer have the cancer contained in the thyroid at the time of diagnosis. About 30% will have metastatic cancer, with most having spread of the cancer to the lymph nodes in the neck and only 1-4% having spread of the cancer outside of the neck to other organs such as the lungs and bone. (www.thyroid.org)
Pretty straightforward until I consider the uniqueness of what I know about my cancer.
My PTC is atypical in nature. My cancer markers indicate PTC, but my tumor was found in excessive ectopic thyroid tissue above my thyroid. When they performed a neck dissection of 20 lymph nodes during my surgery, they also excised a lesion from my sternum/clavicle. I was told I had a normal thyroid gland.
The ectopic thyroid tissue (ETT) is a rare phenomenon with an overall prevalence of 1 in 100,000-300,000 in general population, and 1 in 4,000-8,000 in patients with a pre-existing thyroid disorder.
This concludes my game of “why me”. Here I sit as the atypical, metastatic ectopic tissue thyroid cancer girl with a rare sternum/clavicle excision. It’s bizarre!
Now, while I can choose to feel bad for myself in the moments of gravity where I feel the significant life shift, I often don’t. I read this one statistic within 72 hours of my initial diagnosis, and it helped me to breathe:
If thyroid cancer has spread to nearby tissues or organs and/or the regional lymph nodes, it is called regional thyroid cancer. The 5-year survival rate for regional papillary thyroid cancer is 99%. (www.cancer.net)
Cancer has changed my life in more ways than I could’ve imagined. Even for most of you reading this blog, I know that you likely can’t grasp the day-to-day differences it’s brought to my life for my family, and that’s O.K. I hope you never have to know.
If you have been reading Parts 1-3 of my cancer diagnosis journey wondering if you might end up with thyroid cancer next, I hope your mind is put at ease. As you read here, it’s RARE!
In addition to the statistics provided above, here are a few more worth noting.
– Papillary thyroid carcinoma (PTC) is one of the fastest growing cancer types with over 20,000 new cases each year.
– Most thyroid nodules are benign, but about 2 or 3 in 20 are malignant and cancerous.
– Thyroid cancers account for only 1.5% of all cancers in adults and 3% of all cancers in children. In females, however, thyroid cancers are the fifth most common cancer, comprising 4% of all cases.
Now that we all feel well-informed about thyroid cancer, I’d like to share with you about my symptoms leading to my diagnosis. I hope this doesn’t produce any fearmongering but rather this information informs you to live preventatively and with awareness.
The overarching message within this blog post is to encourage you to be your own advocate. If you sense that something is off, don’t delay figuring it out. Get to the bottom of it! If your quality of life is affected by your health, take the steps necessary to get well.
When I was dating my husband in 2020, we were in a long-distance relationship. I was an hour ahead of him on eastern standard time while he was on central time in Missouri. When I think back on my first symptoms, I believe they occurred during this time. I would often put the girls to bed and then call him. We both worked full-time jobs, so this was often our window of time to talk. I like to go to bed by 10:30pm at the latest but would stay up after hours to make plans with Michael. It was normally no problem to stay up, but I started to have these episodes that I now recognize as waves of hypo- and hyperthyroidism. It’s a distinct experience to enter a state of thyroid disorder. I didn’t know anything about my thyroid; therefore, I had no understanding of what was happening.
For those of you who are unfamiliar like I was, hypothyroidism and hyperthyroidism are thyroid disorders where the thyroid produces too little or too much hormone. The causes, symptoms, and treatments differ between these two disorders. In the United States, hypothyroidism is more common; however, it’s not uncommon for the disorders to overlap.
For me, I would often experience extreme fatigue, light sensitivity, and headaches. Overall, I would feel lightheaded and experience brain fog. Most of the time it would happen at the end of the day when I was tired. Sometimes Michael would want to talk about things, and I felt like I had a mental block around certain topics of conversation. We discussed at the time that I might be experiencing trauma, and while that also tracks for me, I realize now that I was experiencing an influx of hormones signaling panic, anxiety, and insomnia.
We had a lot going on at the time. I knew I was under stress, but I was also the happiest I’d been in a long while. The Lord was blessing us as we moved towards marriage, but the logistics to be together were taking careful planning and time. There were a lot of emotions involved in opening myself up to marriage and rebuilding trust, just as there were for the many family members and friends who watched the girls and I walk through devastation and who naturally wanted to protect us from continued suffering and hurt. I told myself that stress was causing these symptoms, and I believed they would be temporary and were circumstantial. In part, I wasn’t wrong, but there was certainly more going on than I realized.
Michael and I married on November 24, 2020, but we would not live in the same state until February 19, 2021. We hadn’t planned for this time apart to be as long as it was, but this is how it shook-out once we made the plans for his move to Georgia. During that time, I saw Michael for Christmas and his 40th birthday in January. Little did we know then, but the Lord would bless us with a surprise baby boy, our son, Moses, who would be born exactly 9 months later on September 22, 2021. Happy 40th Birthday, Michael!
The first few months of my pregnancy with Moses, I really struggled. I have always been sick during the first trimester with each of my babies, but this time was different. Typically, I was nauseous in the past and had a hard time eating. This time around, I had extreme fatigue almost to the point I couldn’t function. I had headaches and I saw auras with them. I was irritable and felt out of control with my emotions. It was easy to assume that everything I was experiencing was part of pregnancy or due to the many transitions taking place in our lives, which is what I believed.
On September 2, 2021, the same month I would give birth, I had my eyes checked for the first time in 4 years. Google had convinced me that pregnancy had changed my eye sight, maybe even temporarily, which is what caused me to have light sensitivity, auras, and blurred vision from time to time. I received an updated prescription for glasses, confirmed the stigmatism I’ve known about, and nothing else from that appointment signaled any alarms. Though, the eye doctor did encourage me to seek a neurologist.
At the beginning of September, I switched from full-time hours to part-time hours anticipating birth. I was in nesting mode, but still much on my feet. I even planned and attended an event on September 16th, practically waddling. (You should see the photos!) I had worked full-time my entire pregnancy without skipping a beat, but I knew all along that I wasn’t feeling quite myself.
It wasn’t until Moses was born that I realized my postpartum experience was also unlike anything I had experienced with the girls. Immediately after birth I began telling everyone that I didn’t feel right. They had given me a shot in the hospital minutes after birth due to excessive bleeding. Once I was home, I kept wondering if everything was O.K. because I had a low-grade fever that would not go away and the bleeding persisted. The headaches kept coming harder and stronger. Breastfeeding felt impossible, while I had always enjoyed it and experienced success with it in my earlier pregnancies.
The less sleep I got during those newborn weeks, the worse-off I became. Some of you may remember me posting about my left leg. I have experienced nerve damage in my left leg since the end of 2020. With chiropractic care, I have managed the discomfort and achieved relief, but it always comes back with a trigger of stress. I don’t know where this nerve damage came from, I just know that it started one day (at the same time I got covid for the first time, which may be coincidence). It can be dormant for a month, but the second I lack sleep or stress is triggered; there it is. (Saying this here because these are all symptoms of thyroid issues, but I had no idea. I’m still dealing with the nervous system stuff now, and it’s only gotten worse. It progressed overtime. I now have it on the right side of my head and behind both shoulders. It’s even progressed to muscle weakness. More on that another time).
I remember talking to Michael about how I was feeling. He asked if this had previously been my experience postpartum. I remember telling him “No,” and trying to explain the difference. I felt like I was losing my mind. There were nights where I was so tired, physically, and mentally, but I couldn’t sleep. I would lay awake with anxiety and insomnia, but I couldn’t pinpoint what was making me so anxious. I do believe my past trauma contributed to this, but I began to realize my life was growing perpetually anxious. I’m happy to expand on this more, to anyone who is interested in hearing, but for the sake of hitting the high-level points in this blog, I digress.
My postpartum visit was scheduled for six weeks postpartum. I moved it up by half and saw my practitioner on October 14th. I was still experiencing heavy bleeding after birth, which they had said should subside in a few days. During my visit, my blood work was normal, my blood pressure was normal, and my physical exam was also normal. They even checked my thyroid at this time, all of which was within normal range. Looking back, and knowing what I know now, my thyroid was on the cusp of what’s considered functional range – leaning towards an overactive thyroid (sharing in case anyone knows about the thyroid). They put me on clindamycin for a possible uterus infection, and progesterone to help my uterus contract and cleanse.
A few days went by again and I still didn’t feel well. The antibiotics and progesterone brought on their own host of side effects. I was lightheaded, dizzy, and had some blurred vision that came and went. I started to worry again that something was wrong. I asked to be seen again on October 21st and my husband came with me this time. He was worried that I had not clearly explained to them how badly I’d been struggling and thought maybe they didn’t understand the severity of what I was experiencing. Michael worried that I wasn’t advocating for myself, and possibly because I was unwell.
At this appointment, we felt like we hit a wall. We explained all that we could, but were met with, “Everything looks fine.” We became discouraged about our care. We had hoped they would push for more testing or would get us to a specialist, but they didn’t seem motivated to do anything further to seek answers. They sent us home and everything persisted. I made the calls to get in with a neurologist, but they had a wait list that was 2-3 months out. I wouldn’t be seen until January 17, 2022.
Three days later, on October 24, 2021, I developed a migraine that impaired me and lasted for several hours. I couldn’t see, sleep, or move from the bed. Michael stayed up with me all night trying everything he could to help the migraine pain. We tried cold presses, darkness, ibuprofen/Tylenol, and ear plugs. It lasted for hours, and without much relief Michael prayed over me asking the Lord to help us. Moses miraculously slept for 8 consecutive hours that night, and Praise God, because Michael led worship the next morning after a night of no sleep, but at least no double-duty.
The next morning, I went to the ER in desperation. It was tricky to leave my house because I was breastfeeding our son every couple of hours. My mom came to watch all three kids. I remember packing my pump and leaving milk in the refrigerator. When the ER admitted me, I did another blood test and took a urine sample. My sample came back with showing protein in my urine. My blood work showed anemia and a vitamin d deficiency. They gave me intravenous Reglan/Benadryl fluids. They decided to do a nuero package *CT scan because of my migraine. (*I now wonder if they had done a CT scan that looked at my neck and chest if they would have caught the cancer in October. I had not developed a lump in my neck at the time, that I knew of).
They sent me home and told me to follow-up with my PA.
Prior to my emergency room visit, I had already been taking steps to switch providers to Longstreet Clinic. I took the soonest available new patient appointment set for January 21, 2022.
My co-worker highly recommended her family member (a cousin) for my obstetrics and gynecology care. I was able to get in with the new OBGYN on November 4, 2022. We needed someone to listen to our concerns and I was due for my postpartum check-up visit at 6 weeks.
Before the OBGYN appointment, my husband stayed up with me the night before and made a handwritten list of the symptoms I was experiencing. I’m so glad I still have that list today so that I can accurately share it with you now. The list of symptoms* (written by Michael):
– Significant blood loss during and after birth (9/22/21) – shot was given in leg post birth
– Once home, a combination of Motrin and Tylenol were used for pain. After ten days, Kaley was encouraged to slow the use of the pain medication. Her pain was still very high, and the bleeding was still heavy.
– Headaches began to manifest as well as a low-grade fever that has not gone away.
– Had appointment moved-up and doctor pressed on uterus. Pain was heavy on right side and a uterus infection was suspected. Kaley is allergic to penicillin so clindamycin was prescribed.
– A week went by and Kaley still felt bad. An ultrasound was given and showed excess fluid/blood. Progesterone was prescribed to clean-out her uterus. Bleeding subsided, but headaches continued.
– 5-6 days later Kaley had a significant migraine (it started with auras).
– ER visit the next day – was given Reglan/Benadryl on IV drip. CT administered and showed evidence of migraine. Urine had protein. Vitamin D was low.
– Kaley was told to go ahead and finish the progesterone prescription and see provider again on November 11th.
*There were a couple of other symptoms, not mentioned above, for the sake of not getting too personal for the blog, but if you are really curious about them, I’m happy to share via private message if it helps to know.
My new OBGYN was a godsend. Thank you, Lord! I saw her November 4th and she ran all her own tests, listened to me, and was very thorough. I must have been at her office for two hours. She consulted with other doctors within her clinic and together they decided to send me into surgery the next day for a D & C (dilation and curettage).
The next day I showed-up at the hospital in the morning ready to undergo anesthesia and an hour-long medical procedure. I had never been under intravenous anesthesia before, or inside of an operating room. It was a bizarre experience. One that I believe the Lord used to ease my anxiety and mystery of the total thyroidectomy and neck dissection, major surgery, that I would have a few months later. At least by the time that came, I was familiar with surgery, anesthesia, an operating room/table, and post-op. (IYKYK)
Sadly, this medical procedure ended my breastfeeding journey with Moses. He was only 2 months old at the time, but my body simply couldn’t keep up. I was depleted. He was hungry. Everyone was happier once making the switch to formula, but it was still heartbreaking and exhaustive to navigate amidst everything.
I had told my partners in real estate that I would resume working again in the new year. Life at home, adjusting to having three kids, one being a newborn, was sweet and also a blur. I do believe the D & C helped me and was necessary, but it wasn’t ultimately the problem. My entire body was inflamed. Now that I’ve done the research and I’ve grown in knowledge, I see how it’s all interconnected. It’s becoming so clear to me that I could not bounce back from birth, regulate my hormones, or clear my uterus because my thyroid was out of whack. I had cancer!
We traveled to Mississippi for Thanksgiving and as soon as we returned I had my post-op visit with the surgeon who performed my D & C. I told her I was still struggling. She was concerned, but was glad to hear that at least some of my symptoms had resolved. I told her that I was scheduled to do a full metabolic panel and new patient appointment with my new physician in January and that I would be seeing the neurologist on January 17th.
We gave it a rest and enjoyed December, though we remained busy. I planned another event for my real estate team, which was a Santa meet-and-greet. It was a huge success and so much fun. Our whole family enjoyed it and I loved being around people from work again. Michael and I both agree that there was something memorable about this event that stands out in our minds, which was bad breath. Mine. How embarrassing to note, but, oh, so important! I was talking to a client and Michael joined our conversation. He encouraged me to drink some water and whispered to me that I might want to grab a mint. I have never struggled with bad breath (that I know of), but had noticed that my mouth was consistently dry. My parents later told me that they had also noticed my breath. I became self conscious, but I never would have guessed it was caused by cancer that was growing within my neck. Cancer has a smell. Michael and my parents, unknowingly, told me separately that my breath smelled like sulfur. Google: thyroid issues and bad breath.
Shortly after Christmas, we all got sick (typical). I couldn’t get well. I returned to work, but eased back into it with part-time hours again. I was still struggling with fatigue, headaches, and all the same symptoms, but also had a sinus infection that wouldn’t go away and an achy chest to add to my list of problems. My co-workers were aware that I hadn’t been doing well and encouraged me to lay low. I became anxious as I anticipated my upcoming appointments with my new physician and neurologist. “Something’s got to give,” I remember thinking to myself.
January 17, 2022, was a date I had been waiting for since October. It was my neurologist telehealth appointment. Wouldn’t you know, Gainesville would lose power and receive 6 inches of snow, lol. It was cancelled and rescheduled for February 1st.
January 21, 2022, I showed-up to establish with my new care at Longstreet. It was great to meet my new provider. She was apt to listen to me and I even remember her checking my neck. She told me that my thyroid felt a bit enlarged, but said that “several people have that going on”. She wanted to do blood work to see what it said. I was more concerned at the time about wanting to get well from the month-long sinus infection. I told her my chest was achy and wondered if I, in fact, had pneumonia. I’ve had pneumonia once before, which makes me predisposed to having it again. I was negative for covid (I had taken two tests separated by a few weeks). She ordered a chest x-ray and I completed it before I left that day. She scheduled me for labs in April and suggested I take a steroid to get well.
The chest *x-ray came back clear. No pneumonia or lesions present.
*To this day, that x-ray has brought me a lot of comfort. When I received my cancer diagnosis on March 17th, it was one of the first things we recalled when we were wondering if the cancer had spread.
February 2022 rolled around and I was busy again. I was back to doing business development, branding/marketing, real estate, and all the things that I do. We had our nanny’s Sarah Kate and Mady working on a full-time child care schedule. During this time, our middle child was undergoing assessments for developmental delays, mostly with her speech. I was driving to Kennesaw each week and our lives had never felt more hectic. I was building content for my businesses, which I had planned to launch in May, and I had two big photo shoots scheduled. I was feeling the pressure of a busy schedule and we were still not sleeping through the night with Moses.
We were exhausted, yet I couldn’t sleep. I began to struggle with insomnia and, what felt like, panic attacks. I would wake-up from my sleep absolutely drenched in sweat. Come to find out, this is called “night sweats,” and it’s a huge red flag that something is wrong. I have had multiple doctors, my physical therapist, and others all tell me that this was my biggest sign and symptom of my lymphatic system responding to cancer.
Sometime around the end of February, I noticed a lump in my neck. At first I thought I felt them evenly on both sides of my neck. I thought I was having some lymphatic drainage from the sinus infection that I had for over a month. I didn’t think much about it for a few days, until one night I told Michael to look at my neck. He immediately told me I should get it checked out. Of course, I listened to him and went the next day. (Not). (Lol). But I wish I had.
Almost two weeks fly by and I completed my second big photo shoot on March 5th. One day I noticed that the lump seemed to be bigger on my left side. I looked at myself in the mirror and tried to determine what I thought.
On March 9th, I had a chiropractor appointment and I decided to ask Dr. Bryan and Dr. Marjorie about my neck. They were suspicious of it and encouraged me to get it looked at. Something about their suspicion made me take it seriously, and I’m so glad that I did. I had some extra time in my schedule that afternoon, so I checked into the Urgent Care at Longstreet.
It was about 3:30pm in the afternoon when I checked-in. It was a Wednesday, which is a night during the week where we host our gospel community. I texted Michael and told him to start cleaning the house (lol) and that I would be home soon to help him. Little did I know, I wouldn’t be home until after 8pm that night.
It was a quick wait. They took me back to one of their patient rooms and a nurse checked my vitals. I told her I was there to have my neck looked at because I had noticed a lump. Her reaction was my first true indication that this was not normal. The doctor came in promptly and began to ask me questions about the lump. She touched my neck, felt the lump, and then brought a tongue depressor to my neck. She was using it to mark the size. “You have a nodule or a tumor,” she said. “I may even feel two or three. Have you had difficulty breathing? How long have you had this?” “I noticed it maybe three weeks ago. It’s gotten bigger since then.”
“Do you have time to do a CT scan here tonight? They are open until 7pm. I would advise that you do one tonight, if you can. Otherwise, I’d like you to come back first thing in the morning.”
I texted Michael and told him I was going to need to stay. I checked-in to imaging on the same floor and had a crazy experience. Apparently, they were going to be receiving a brand new CT scanner at the clinic the next day. They were working me in and I was going to be the last scan that they would ever do on the equipment there. The technologist and a few others were talking about how they were going to miss “‘ol Bess”. They said that the equipment was going to be broken down and used for parts, but that many of them had worked there for 20+ years and it was the only equipment they had known and used. “This machine has probably done over a half-million scans, if not more. And you’re going to be the last one.” She was very warm and smiled. I remember feeling comforted by her friendliness, while thinking back on the urgent care doctor’s comment… “Did she say the word tumor?”
They asked if they could all be in the room, and if I minded, to which I replied “No.” “Ok, we are going to inject you with iodine for contrast. You may feel warmth throughout your body, which is just the iodine entering your bloodstream. It will subside within a few minutes.” They all stood at my feet and watched my body be lifted-up and back into the scanner. I closed my eyes and started to pray. I wasn’t fearful at the time, to be honest, but I was taken by surprise with how my afternoon had turned into an evening. I was ready to be home. “Ok, that was it. You are done. Thank you for allowing us to stand-in.” “Sure,” I said. “A radiologist will be in touch with you to review your scans by end-of-day tomorrow. If you don’t hear from anyone, make sure to give us a call.”
I left the urgent care and stopped to pick up some food. I was starving, and I knew I was about to go home to a house full of people. I walked into the house. I remember eating at the kitchen table listening to the group finish their discussion. A few people left and my pastor stayed a few minutes after. I remember telling Michael and Alex about the urgent care visit. Mostly I shared about “what are the odds that I would be the last person to ever be scanned on that CT machine.”
“Let me know what they say about your scans, Kaley,” I remember Alex saying when he left, “I’ll be praying.”
The next day I received a call from the radiologist that went to my voicemail. I listened to it right away and all I remember was it saying, “We would like to schedule an appointment for you to meet with general surgery.” Surgery? I thought. “We are likely going to need to have a biopsy. Please call to schedule with them today.”
–
Stopping here for now.
Part 4 will be completing this (very lengthy) series. So, I will be finishing that next. I can’t seem to write without a ton of detail, but that’s just how it must be. These thoughts flow, and this blog is just as much for me as it is a resource to you. I’m constantly processing ‘cancer’ and all that has transpired.
Part 4 will go into detail about my first appointment with general surgery and the biopsy/ultrasound experience. Also, the experience of sharing the cancer news with Michael and my family. Spoiler alert: I found out that I had cancer on MyChart while at work.
I also plan to include a high-level “short list” of symptoms, in case you are the “cliff notes”-type of person, no judgement!
In Him,
