I couldn’t come up with a clever title. I didn’t want you to scroll by and miss the update I promised to give almost a month ago. Sometimes I feel busier than ever and others, like on a Saturday, I feel like all I need to do is stay in bed waiting for COVID-19 to be over and good health to come back to me.
Many know that we’ve been trying to manage my Cushing’s Disease symptoms with medication over the last year. When I finally got in to see a new doctor at KU, she listened and agreed that I had an active case of Cushing’s Diesease. After taking my case before many doctors at KU on the tumor board, they felt my disease wasn’t bad enough to warrant another surgery. That’s what lead to trying medication. For six months I got minimal to no relief and continued to see symptoms of the disease. Nothing was indicating any sort of remission. I pressed my doctor for a different medication. As fate would have it, a new drug had been approved in April for the treatment of Cushing’s Disease. I was quickly switched and have been titrating up on this medication. It’s a slow process and I am only at a third to a half of the dose my body will probably need.
Something about this wasn’t sitting well with me. What about the lingering tumor? Why would we leave it when before the first line of treatment was surgery. I have been researching doctors off an on since about 3 months after my first surgery when I didn’t get the relief they offered. I felt worse. I didn’t regain strength. I didn’t get energy. I didn’t lose weight. With COVID setting in, I started looking for another doctor around May. I needed a second (or 4th) opinion. Many places were still only doing 2nd opinions for a flat rate and would not be able to submit to insurance. However, Pacific Neuroscience Institute and Dr. Araque, an neuroendocrinologist I had learned about in my support group, was now doing telemedicine. Their clinic believed in doing 2nd opinions just as a regular specialist doctor’s appointment and they are in-network with my insurance. I was able to schedule an appointment within a couple of weeks of getting all of my records to them.
Bottom line: My first surgery was NOT a success, as the doctors here claimed it had been. What Chris and I believed, that my cortisol never dropped enough, was correct. The criteria and rules we had been told prior to the first surgery were suddenly not as hard and fast as they’d told us they were.
Fast forward to Monday last week. I met with the neurosurgeon, Dr. Kelly and we went over all of the new baseline testing Dr. Araque had ordered as well as my first surgery. Dr. Araque was unappologetically sure that the first surgery did not get all of the tumor cells. She trained at the NIH. She is up on the latest research and treatment. She without a doubt said that even now, surgery is still the best treatment. Dr. Kelly agreed. He outlined what he would do to make sure they recovered the tumor cells and put me into remission.
My endocrinologist here is happy to work with my team at Pacific Neuroscience. Now comes the hard part. This is the part that our family will need prayer and help making happen. We will have to travel to Santa Monica to have this done. I will only need to go once, but my stay will need to be about two weeks long. Post-op stay is expected to be just two nights, assuming everything goes well. Currently with COVID restrictions the hospital is allowing one family member to be in the waiting room and hospital rooms. They ask everyone to leave at 8 pm.
Thank you for reading our update. We are excited and a bit apprehensive about how this will all work itself out. We have to consider care for the kids, our dog, how to navigate COVID while there, and finding a place to stay that won’t be affected by the wild fires.
We know that God will make a way. If you have resources as far as places to stay, experience driving from KC to LA, or anything else you think of, we would love your input and suggestions!