Our first visit and update from Levine Cancer Institute in Charlotte, North Carolina.
Hi friends,
Our family can’t thank you enough for the support shown to us after our last update. We have felt so loved, thought of, cared for, and refreshed in all the ways. You have met prayer needs and tangible needs at a depth we could never have imagined. You cleared out our Amazon wish list in a matter of hours. Friends were texting my parents asking if the Amazon wish list link was active because every item was bought by the time they saw it.
We came home from North Carolina to a stack of boxes at our door. I still wish I had taken a picture. We were moved by such generosity! If you haven’t heard from me yet, please know that we are so grateful and extremely touched. I’m doing my best to acknowledge each gift as I can. Also, Amazon does not always include a packing slip, so a few come without notes, and we are grateful to the anonymous givers. I’ve read every comment, DM, text message, email, and listened to every voicemail received. Thank you.
To the GoFundMe donors… we are blown away and completely humbled by your monetary support. You have allowed us to have extra hands for childcare, and help with managing our home, which continues to be our greatest need so that I can find time to rest and attend appointments. Sarah Kate Walls and Mady Herndon are extensions of our family… and our kids adore them. They have washed dishes, put laundry away, picked up toys, and ran errands for us from time to time. They also give my parents a nice break, who do overnights often with all three kids. This is truly such a gift so that I can enjoy time with my family and be present with them on hard days. It also keeps Michael from ending a full day of work and starting immediately on housework, solo, a lot of the time. It won’t be like this forever and we are doing our best to have perspective and manage.
Right now, most of my time is spent trying to rest and keep up my energy. My thyroid medication has been changed 3 times in the past month. I’m still getting used to my plant-dominant diet, juicing, and taking 54 supplements per day, soon to be increased to 60+. It’s time-consuming. I also continue to research many things in relation to healing from cancer. I’m my own patient advocate, making calls for various appointments and handling a multitude of bills. Recently, I spent 12 hours in one week preparing my medical records for consideration with new specialists and the prescription board. Cancer can feel like a full-time job at times, but I’ve been grateful to drive my kids to and from school each day and get up each day to pack their lunches like a normal mom. It’s the little things that keep this season of life feeling somewhat normal for us all.
The tumor on my left side is causing me some pain. It’s the largest one, and only 1 cm, but because it’s directly behind my clavicle I have a hard time sleeping on my side and raising my arms. It can also be uncomfortable to pick up and lift Moses. I’m working through it, even lifting 5 lbs. weights once a week with my trainer, Bryan. When I rotate my arms forward, my left clavicle makes a ‘pop’ sound when it rubs against it. When I wear my seatbelt in the car it goes directly over it and it’s quite uncomfortable.
My prayer requests continue to be:
· Good veins
· Stable tumors – no growth or spread
· Weight gain (I’m 103 lbs. trying to maintain at least 100 lbs.)
· Healthy appetite
· Thyroid hormone balance to resolve
· Energy and quality rest
· Minimal side effects for thyroid medication changes and new medications
· No infections or sickness
· Find out what is going on with the left side of my torso where I have a new pain
Thank you for covering us in prayer for our visit to Charlotte. Thank you also for allowing space for this update. Our day in Charlotte was packed full. It was a lot of information received and a lot of labs and testing. Some of which we still don’t have information about. As test results roll in, following the days after an appointment, we like to process those with our family before sharing with the masses. Our parents and siblings walk this road with us closely.
A few days after my appointment on January 12th, I posted a few Instagram stories for those who follow me there. I’m not great about posting to Facebook, but I do post to Instagram stories often. It’s become the easiest way for me to get quick messages out and share bits of our healing journey day to day. Please follow me there, if you’d like. For those of you not on Instagram, I’m sharing some of those images within this blog post.
On the night of January 11th, Michael and I arrived to Charlotte just after 10pm. We made it to the hotel in enough time to go to sleep for the night. A non-profit that assists traveling cancer patients helped us book a nice room at a Hilton. We woke up the next morning and headed to the Levine Cancer Institute.
My appointment was at 10:30am, and we didn’t know what to expect. We registered in the lobby, and I received a page of labs. Then we headed to the third floor for endocrine cancers. There was a bell in the waiting room “No matter your victory large or small Ring the bell to share with them all”. Not my turn to ring the bell yet, but it was neat to see. There was only one other endocrine cancer patient in the waiting area. I was the youngest cancer patient I saw during our visit to Levine.
I chose to wear a sweatshirt that said “Be a Nice Human” with butterflies, a nod to thyroid cancer. I like to wear some positivity in these places to lighten the mood and insert some joy. I got a lot of comments and smiles from patients and staff, which breaks the ice. No matter what, I always sport a sweatshirt and comfortable pants because they keep the office cold, whether in Georgia or North Carolina. I also wear beanies with my sweatshirts a lot because when I have scans, they make me tuck my hair away and I like to cover up the many ‘pokes’. I’m already planning my next outfit for my next visit… I’m thinking I need one of those Georgia BACK-TO-BACK Champs sweatshirts. Go Dawgs!
My next appointment in Charlotte will be January 31st. I will have two appointments that day. The first appointment will be with my endocrinologist and the second appointment will be with an endocrine surgeon re-do specialist—a surgeon that specializes in re-operative thyroidectomies (and other head/neck surgeries, such as neck dissections). Once you’ve had your neck cut open once, anyone doing a repeat surgery ought to be skilled as you are considered a high-risk surgery with scar tissue. This was something we learned, but had not considered, during this appointment.
We met my new endocrinologist and were pleased. As I put it in my Instagram post, I recalled feeling “slightly relieved, apprehensive, grateful, panicked, and shook… all at the same time. But overall… positive, encouraged, and hopeful. Grateful to be moving forward. Will be processing this one for a while.”
In short, the appointment was approximately an hour. I had been following a care plan put in place by the Georgia team, which came to a screeching halt the moment we talked with the specialist. We had not anticipated such a mindset shift. I had been following a low-iodine (LID) diet to prepare for another whole-body scan, which I had anticipated doing at Emory once I returned from North Carolina. I had been on the LID diet for almost 4 weeks (over Christmas even) and was waiting to begin thryogen injections (which artificially spike your TSH to dangerous levels). Whole body scans also require a radioactive tracer, so I had been anticipating another week in isolation during the month of January.
Come to find out, the specialist did not feel this scan was necessary and told me she would cancel it. She believed it would be redundant information from my last scan in July, “given RAI (radioactive iodine) did not show uptake outside thyroid bed/thyroglossal duct at post-treatment whole body scan (likely because small-volume disease beneath the detection of the scan).” Instead, she wanted to order a torso/neck SPECT CT Scan for me to complete the same day. She assured us that this would detect any other cancerous activity beyond the cancerous nodes we already know about from lymph node mapping. We told her we would be willing to stay for a scan after blood work in the afternoon.
Her other recommendations and findings include (quotes):
· “It would not be surprising given the number of initially positive nodes that there is evidence for some residual disease in remaining neck lymph nodes. The primary question is whether these need to be addressed with surgery now or in the near future.”
· “The patient’s overall prognosis is very good. The main concern is the patient’s quality of life with thyroid cancer. Over her lifetime would, in general, prefer to avoid repeated surgical interventions if possible, to preserve quality of life given low mortality.”
Immediate care plan:
- Surgical opinion/review of scans.
- Labs today with repeat markers.
- Come off low iodine diet.
- Request path slides for path review here.
- Likely present to *ETB once we have more data. (*tumor board of professionals: specialists and surgeons)
- Consider genetic eval to see if patient qualifies for panel testing.
- After evaluation here, get patient into long term surveillance program that is more convenient for her if possible, given the long drive here.
After meeting with the endocrinologist, we headed to the blood lab. They were so thoughtful to take my samples from my lower arms in order to leave my “good veins” for the contrast IVs for the scan. It’s the small gestures like this that remind you are within a blood lab at a Cancer Institute.
Did I mention we were fasting? Michael Shawley fasted, too. Solidarity.
We had to leave Charlotte and drive 40 minutes to Locust, North Carolina for the scan.
Short, cool story…
When I checked-in for my scan at Locust, the front desk administrator recognized my endocrinologist’s name (who made the referral). She said, “Oh, you have the absolute best doctor. My mother-in-law had lymphoma and our family had her come down from Tennessee to be her patient. She’s phenomenal, and she gets things DONE. Like this scan today. You’re in good hands.” I really appreciated that she shared this with me.
The scan took less than 15 minutes, and we were cleared to leave for the day. We were starving and I was ready to find some food with some iodine! (Google: thyroid and iodine deficiency)
We ate vegan Indian food, and my heart and belly were so content. I was wiped out. I rode home passed-out in the passenger seat of the car while Michael drove us back to Georgia in the huge storm. We stopped for coffee and then for gas, and finally made it back to Gainesville around 9:40pm.
Update:
My scans have not been reviewed with us by the doctor, but we have been able to view the scan notes in MyChart, which appear to be unremarkable- showing no osseous abnormalities or definable masses. (Outside of what we already know about)
We will certainly know more in time. For now, we praise God for the good news we have. We feel blessed to have received unremarkable scans, a good prognosis, and a cancelled whole-body scan. I was able to come home from North Carolina and forego going to Emory this week. We celebrate progress on this healing journey, and we know that each day is a gift.
Under the mercy,
