- Sue Stipek
2020 to 2022: What have we been doing?
We got back from Costa Rica in early March 2020 and a week later the world shutdown. It was supposed to be only for 3 weeks. Well, you all know that didn't work out. So, we hunkered down like everyone else, bought all the toilet paper we could find, and I started making masks to wear to the grocery store.
A planned trip to New Orleans was put on hold, then rescheduled and finally cancelled all together. Our retirement was supposed to be all about traveling and I was planning an around the world trip. I got into crochet instead and Larry wrote more stories that eventually lead to the publishing of a book version. We bought a travel trailer and decided to do as much USA travel as the pandemic would allow us to as the rest of the world was shutdown.
We picked up the travel trailer in Ohio in August of 2020 after purchasing a Jeep Grand Cherokee to pull it with. We visited friends and family in the Midwest and returned home to Virginia. I went on a diet and lost 50 pounds. I was feeling great, but my Gall Bladder was causing problems, so I decided to have that removed -- and with that my world changed. They found a spot on my liver during the operation. After 1 CAT and 2 PET scans, and biopsies of my liver and thyroid, it was determined that I had Medullary Thyroid Cancer. My oncologist referred me to Johns Hopkins for a second opinion as this is such a rare form, he wanted confirmation.
It was an early, snowy February morning that we drove up to Baltimore with all my paperwork and everything I knew about my health to see an endocrinologist. We left very early as I didn't want to miss this appointment. There was so much that I didn't know, and I was scared. I knew it was a rare cancer, but I didn't know much more. Johns Hopkins is a Center of Excellence in the treatment of Medullary Thyroid Cancer (MTC). I had always thought that thyroid cancer was a very curable disease. It isn't always. I transferred my care to a great surgeon and endocrinologist and now have come to know Baltimore very well.
It took several weeks to get an appointment with the surgeon. A lump on my thyroid was now very noticeable and I want to get rid of it as it seemed to be growing. During the appointment they took an ultra-sound and discussed removal of the thyroid and lymph nodes. So much was spinning in my head that I can't really recall all that we talked about. But he expedited a video consultation with his endocrinologist partner and scheduled surgery for 5 weeks out. A few days later I had a call from Dr. Ball, a MTC specialist at Johns Hopkins, and he explained much more including that there are different forms of MTC.
Before I was referred to Johns Hopkins, my local oncologist did have blood drawn for genetic testing, a must with MTC. So now I was frantically pulling together all the information I could as fast as I could. I had the images from the PET scans and biopsies sent to Johns Hopkins for review. Was this the hereditary form or did I have a genetic mutation? It was a RET-positive mutation. To be overly simplistic, RET means rearranged during transfection - the process where the genes mutate during normal cellular processes and become cancerous. This was actually good news as there was a newly approved drugs called Selpercatinib (brand named RETEVMO), that was very promising in trials at shrinking RET-positive tumors. I asked Dr. Ball if I could start on this drug as soon as possible before surgery. He said yes and thankfully our insurance covered this very expensive drug.
Within a week of starting on what we call "supercatnip" I could feel the tumors in my neck shrinking. Surgery was postponed for 3 months to let the drug work. My spirits sored and my hopes were high that this miracle drug would cure this thing that was growing inside me.
3 months later I had another ultra-sound biopsy done prior to surgery, and they could barely find any cancerous tissue to biopsy, as "supercatnip" had so destroyed. But the standard of care is still to remove the thyroid and cancerous lymph nodes. After an 8-hour operation (the neck is the most difficult place to operate as everything goes through there) I no longer had a thyroid, nor several lymph nodes. One day in the hospital and about 3 weeks of recovery from the surgery.
As someone who never took medications for anything other than temporary periods, I now have to take thyroid replacement and continue to take "supercatnip” and tend to pesky side-effects such as sun-sensitivity, cold-hands, and elevated blood pressure. Though the tumors were removed, I had distant metastasis to other parts of my body. This is the usual with this disease. It is usually found the way mine was - after it had metastasized. It currently is not a curable disease so we stay on drugs and hope that someday a cure will be found. As a rare disease there are only about 1000 cases diagnosed in the US each year. I am under good care at Johns Hopkins with Dr. Ball and continue to make visits and have scans and blood work to check whether there is any progression.
But wait - there's more. One year out from the thyroid surgery and I was diagnosed with endometroid carcinoma. A full hysterectomy is the cure for this, and I had done in May 2022. Thankfully the surgery does "cure" this type of cancer and all looks good for now, even if I do have a lingering worry of what may be next. My 72nd birthday is in November, and I am hoping for many more.
This is my new normal. My world has changed and every day I wake up is a blessing. I now look at the world differently - family, friends, and travel. I will still travel for as long and as much as I can. In fact, we have traveled a lot over the past three years of the pandemic. We have now covered a lot of the United States in our trailer and ventured to Hawaii for a 40th anniversary trip. We added Sweden this summer bringing our country total to 70 and even just finished a bicycle trip from Washington DC to Pittsburgh on the Allegany trail, some 311 miles. And I am planning the next trip now, hoping that we can go to the Caribbean this November and then back to Europe in the spring.
In Sweden we ran across a plaque in one of those tourist stores selling silly little items. But the plaque had a profound statement that we are now living every day. "ENJOY LIFE - there's plenty of time to be dead." I plan to stay alive and thriving as long as I can. Se la Vie!