We have a new cancer care plan established through Levine Cancer Institute.
Hi friends,
Happy Monday. I’m writing today to give the latest update about my second visit to Levine Cancer Institute. Last week, I traveled to Levine on Tuesday, January 31st. I had two appointments back-to-back at noon and 1:15pm. This time, my mom joined me on the trek and drove me both ways. Her birthday was the next day, February 1st, so we tried to have some fun together while traveling for cancer things!
We dropped Ruby off at school at 7:20am and drove to Charlotte, North Carolina. We were blessed by gas gift cards, which were given to us by a sweet friend the day before. It takes a village to make these trips happen. I want to be faithful to acknowledge the thoughtful “touches”. Michael worked from home to assist the babysitter who cared for Cami and Moses until the early afternoon. We were blessed by some generous friends from church who covered her cost for the day.
Cami’s grandparents and dad took her to therapy and kept her through dinner, and my dad picked up Moses and Ruby (from school) to keep for another few hours until Michael could get off work. Michael picked up the kids and took them to Greens Grocery Store for a smoked-pork dinner. It was the highlight of their day.
Each time I attend appointments for cancer, we are always faced with having to figure out the logistics of our lives. My parents and our nannies have been the greatest steady help, but this time we had to get creative since Michael had to work and we chose my mom to be my companion.
I packed my pills, snacks, and juices in a cooler for the day. Last time we stayed overnight, but this time we decided to give the one-day road trip a try. It worked well! We arrived at Levine by 11:00am with time to spare. We registered on the 1st floor, and I received my lab sheet. Head/Neck Endocrine Cancers have their own floor: Suite 300. Everyone shares radiology and labs on the registration floor: Suite 100. You see cancer patients everywhere, and a lot of them. We all have one care person, and most patients are in wheelchairs. As I walk the floors, I feel very blessed to be on my own two feet.
I tell people all the time: I never really know what these appointments are going to be like. The weird thing about being a cancer patient is I get scheduled for appointments that I don’t know the meaning or reason for. I just know that I’m supposed to show up, and it’s always an adventure. Sometimes they tell me to fast for labs and I will get a note in MyChart, but most of the time I just show up mentally prepared to be surprised by the nature of each visit.
For example, this time I didn’t have to do any blood work, which I was pleasantly surprised by and celebrated. I did, however, have a camera put down my nose into my throat. I wasn’t prepared to do that, but I went with the flow. Nothing was offered for discomfort, but we did it and made it happen. My mom sat in a chair and we both looked at my vocal cords on a 15” screen while I talked to her. “Hi, mom. How— are— you?” Kind of weird. Everything looked good. Praise God.
I had the camera stuck down my nose for the first-time last March before my surgery. I’ve realized that Levine is going to readminister testing I’ve already done because they prefer to see for themselves. Every specialist trusts their own “people”. They like THEIR surgeons, radiologists, imaging technicians, etc. They have a workflow.
They told me to come prepared with my updated medication and supplement list, which is always changing. I came prepared with it on a USB in electronic form, come to find out that they needed me to handwrite each on a sheet of paper back-to-back to scan into their system. Apparently, there was a huge data breach within the Atlanta health system that caused a strict security measure surge nationwide. They cannot take a USB from a patient. So, here I am with my handwritten prescriptions that took me 30 minutes to write.
We met with my endocrinologist first. She told me a little bit about what to expect with my subsequent appointment, meeting the surgeon. We reviewed my recent labs and discussed another thyroid medication change. I asked her if I could double-up my Synthroid once a week instead of taking a higher daily dose. She agreed to allow me to continue on 112 mcg instead of switching to 125 mcg, but stressed the importance to keep my TSH lowered and suppressed with active cancer, if I can handle it.
She confirmed that my SPECT CT Scan was unremarkable, though she acknowledges palpable abnormality, small nodular areas and the confirmed cancerous biopsy from Georgia. I find it interesting that the SPECT CT Scan did not pick those up, and they are clearly there. Imaging for thyroid cancer is different from most cancers. You are trying to trace thyroid hormone thyroglobulin (thyroid cells), which can only be found with contrast (SPECT CT scan) and radioiodine scans (tracers). Cervical ultrasound in combination with ultrasound guided FNB (fine needle biopsy) is the primary modality of choice for evaluation of thyroid cancer.
We began our consultation with the surgeon, and she opted to do her own ultrasound imaging, herself. She was very thorough. I laid back, reclined in a chair, with ultrasound gel matted to my hair. I should have known to begin the day with a braid because I always end up with one. A braid, beanie, sweatshirt, and leggings are my new official cancer look for efficiencies and comfort.
She then used her fingers to, quite literally, pull the bilateral tumors out of my clavicle and feel them, rolling them between her fingers like balls. I experienced silent pain and discomfort, even some tears, but I was grateful for the thorough expert exam. “These are not lymph nodes,” she said, “they are not a part of your lymph system. These are not attached to muscle. They are dermal nodes of abnormal cancerous cells. They would be very easy to remove.”
It took my mind a minute to process that she had just given me positive feedback. We had previously been told that metastatic cancer was in my lymphatic system. “I believe your overall prognosis is good,” said the surgeon. “Just because I COULD remove these, doesn’t mean that I should. I actually have comfort keeping you on surveillance and monitoring growth. I do want to see you back in three months for a PET/CT Scan from skull base to mid-thigh. I say we hold-off on immediate re-op surgery with no evidence of distant metastases at this time. We can plan another follow-up based on those results. In the meantime, we will plan to present your case to the Endocrine Tumor Board in February, and you can obtain routine lab work on a bi-weekly schedule, locally.”
I experienced immediate relief at the sound of, “I say we hold-off on immediate re-op surgery.” This has been the question in my mind for weeks. I’ve wondered since November if I would have a second surgery in the beginning of this year. Now, they aren’t saying that I never will. It’s likely that I will have another surgery in my lifetime to remove the tumors. They are comfortable letting the slow-growing cancer make the first move, and if it does we can react.
I had never considered that people choose to live with active cancer. Even with knowing other cancer fighters in my lifetime, I had always thought the goal was to remove, shrink, or get rid of the cancer. I had thought that remission was the goal, and that means no sign of disease. My cancer experience has drastically changed my thoughts on healing from cancer. In the cancer community, no growth or stability is considered a “win”. There are even instances of tumors calcifying and active cancer disappearing all together without standard treatment or therapies. Others have cancer for the remainder of their lives and it may or may not be their cause of death. More on this in another blog post soon.
Recently I’ve been trying to wrap my head around that I now live with active cancer. I have tumors that I can feel with my fingers, and I do feel them and check their size often. Sometimes I fear them and sometimes I’m more OK with their presence. Sometimes, I wonder if they are growing and metastasizing, or entering my blood stream. Sometimes, I have insomnia and they keep me up at night. Sometimes, I work out and I can feel pain where they are. Sometimes, I want them out and gone.
Having another surgery would not achieve remission. The chances of there being some residual disease, even after a second surgery, is likely. You always aim for “clean lines,” but the fact remains that some residual disease left behind is highly likely. This led me to question how many times we would be able to cut into my neck. Each surgery is a higher risk than the one before because of scar tissue and intricacies. Surgery can slow disease, but it doesn’t cure it.
I’ll never forget hearing my mom say to the surgeon, “I’m so grateful and encouraged by your review. It wasn’t until we came to North Carolina that we were able to trust this cancer wouldn’t take her life.”
“This isn’t going to take your life,” the surgeon said looking into my eyes. “Our concern for you is your quality of life. The question is… how we can help you maintain your quality of life, while strategically inserting surgery and therapies as necessary throughout several years.”
Mom and I took pictures at the entrance of Levine to commemorate her birthday, and the newly positive news, in our matching black sweatshirts from Shop Dress Up. We went to Optimist Hall and ate at a Mediterranean restaurant called Mezeh. Eating a predominantly vegan/plant-based diet on road trips is always an interesting feat. Charlotte has great options! I even found a juicer with treats and salads, all of which are appropriate for my protocols.
Shout-out to my Keller Williams Lanier Partners Family for my long sleeve Georgia champs shirt. I love you guys, and I can’t thank you enough for the support!
We made it back to Gainesville in time to see the kids before bed at 8:30pm. I brought Michael back a bag of Night Swim coffee beans. I was blessed to sleep in my own bed and start a new, normal day at home on Wednesday.
My new normal looks like routine bloodwork every two weeks, with my next scan scheduled for Cinco de Mayo on May 5th. I have a new Oncology Nurse Navigator who is helping us plan our overnight visit on May 4th since our scans will be early the next day.
One thing I will mention is that I told both doctors about my side pain. They advised that I should take antiacids to see if it gives me relief but thought that I should have imaging done through my PCP if pain persists. They mentioned that it sounds like a stomach ulcer, which could be onset from stress. They do not believe it’s cancer related, as far as metastases goes, but believe it’s a symptom of living with cancer.
Please continue to pray that we get to the bottom of this side pain. I did receive antiacids and it’s helped with the acute pain, but I can still feel a dull pain. This week, I will likely pursue an ultrasound to see what we can find out.
Right now, our kids are sick. The girls both have fevers and Ruby is home from school.
Thank you again for covering our family with prayer. I’m grateful to return to days that aren’t heavily focused on surrounding cancer. I live for the days that I get to be wife to my husband, mom to my kids, a daughter, a friend, a Realtor, and an “oil slinger”. My husband jokes that the police will be onto us soon, with all the drop-offs and pick-ups serving the local moms of Gainesville with essential oils.
I love my roles where I get to give back to the people who have loved me well during the hardest time of my life.
Under the mercy,
