Patient’s Perspective: Robin Bachkosky
Editor’s note: Robin originally told her story in an article in Highlights a few years ago. You can read it here. Since then, she has gone through a recurrence, exploratory surgery, a clinical trial and an adrenalectomy. She has been kind enough to update her story for Highlights readers.
My name is Robin Bachkosky and at the young age of 16, I was diagnosed with Cushing’s Disease. My surgeon deemed me a successful cure, but unfortunately I had a recurrence of Cushing’s just one month before my 18th birthday, just two months before my AP exams, prom, and high school graduation, and just five months before I was supposed to be attending University of Maryland, College Park.
Just as during my first diagnosis, I knew before everyone else that something was wrong. However, the second time, instead of wondering why all of these things were happening, I knew right away that recurrence was happening. Doctors took a while to catch up with me for one simple reason: there was no tumor on my MRI. Eventually my 24-hour urine capture and blood tests showed my doctors that I did have Cushing’s once again and that even though the MRI didn’t show it, there was a tumor in there to be removed.
The timing of this tumor presenting itself through symptoms was truly frustrating. As I mentioned briefly above, I had AP exams, prom, and graduation in just two months. I couldn’t be missing school during the thick of reviewing for exams. I couldn’t be gaining weight and becoming the diseased version of myself for prom and graduation pictures. I felt like my life was becoming a disaster, but I decided this time I wouldn’t let it.
We eventually met with my surgeon to decide whether or not to go in for an exploratory surgery or to wait until the tumor grew big enough to be seen on an MRI. I opted for an exploratory surgery and it was scheduled for June 3, 2016 after all of my milestone events. Until that date, I was put on ketoconazole to try and reduce my cortisol and keep my symptoms at bay. As all of this was unfolding, I decided to defer my entry to college by a year and be a freshman at UMD in fall of 2017, giving myself time to become healthy again.
During the time before surgery, I did not let depression consume me and I did not focus on the symptoms working against me. I worked hard in school to finish high school with the same good of grades that I began with. I found a prom dress that made me feel comfortable and beautiful the entire night, and I made it through graduation with a smile and a sense of pride for how well I did despite major setbacks for the majority of my time in high school. After graduation, I went to the Florida Keys with my mom, my best friend, and her mom. It was a much needed and truly unforgettable get-away, and I loved every minute.
The morning of surgery, I was excited to be done with this once and for all, but my doctors reminded me that since this was exploratory, there was a chance that they wouldn’t find anything and I wouldn’t be cured. I knew that. But I also knew I had the best team in the world and they would do anything to make me whole again. After surgery I woke up to the words, “Robin, we found two tumors.” Before I could process anything, I fell back asleep. Once I woke up and was able to process information, they told me that they found two tumors, but they were paper thin and wrapped around my pituitary gland, so they think they got it all, but weren’t quite sure since the tumor was so unique.
After three nights in the hospital, I was released. As soon as I got home I got changed and headed straight to my community pool to coach my summer swim team. It was the first day of practice and I missed the kids so much. That was our red flag. The amount of energy I had going home from the hospital indicated that my cortisol levels did not crash and therefore I had not been cured. I would find this out a week later after my blood test and urine capture came back.
Once the surgery was officially deemed unsuccessful, I decided to join a clinical trial at Johns Hopkins that tested the effects of levoketoconazole, a version of the medication ketoconazole that I was taking prior to surgery. Just days after I began that trial, I was hit by a pick-up truck while out on a walk and broke my foot. So on top of dealing with what seemed like an impossible disease, I was also not allowed to walk for 8 weeks.
When my disease became more and more of a mystery, we decided to seek out second opinions from UVA, the University of Pittsburgh, and NIH, along with other random endocrinologists and neurosurgeons who were interested in me. I got countless MRIs and blood tests, and did a million 24 hour urine captures (keep in mind I couldn’t walk, so those got interesting). I traveled to UVA multiple times to meet with their team and they suggested insistently that I radiate my pituitary gland. On the other hand, my team at Hopkins strongly suggested I do an adrenalectomy over radiation because radiation in younger patients proved to have side effects in the long run, including loss of function in the pituitary gland.
After what seemed like an eternity, I finally made the decision to go for an adrenalectomy. An adrenalectomy is the removal of your adrenal glands, which sit right on top of your kidneys and produce all sorts of hormones, but most notably cortisol. Once they were gone, I would have to take replacement hormones for the rest of my life to compensate. In my mind, adrenal insufficiency is a small price to pay to get rid of Cushing’s forever. It had been decided that my tumor was not going to be able to be removed completely to provide a definite cure, so the only way to know disease would be gone for good would be to remove the glands. On January 3, 2017, I had my adrenal glands removed and began the road to being “better than ever”. That is something I was told would happen once Cushing’s is finally gone. The recovery was (and still is) an uphill battle. The physical healing from the incisions entailed a few weeks of an odd appetite, because Cushing’s patients are used to wanting to eat all of the time, and of course discomfort from incision sites and having organs messed with.
My battle with an endocrine disease is not over; I have some work to put in and some symptoms such as hair loss, weight gain, muscle atrophy, fatigue, and others to get rid of. Lots of those take time and patience. I did not let this defeat me. I had every right to shut down and become depressed and overwhelmed with my situation, but I stood up for myself and did everything in my power to find a solution. We will continue to monitor my tumor in hopes it keeps to itself and doesn’t become an issue. In the meantime, I will keep rolling with the punches and riding the waves. If other patients want to connect, here are my social media handles:
Instagram: robby.bach Twitter: robby_bach