The Girl Who Cried Cushing’s Disease
I call this face frustrated but hopeful.
The Girl Who Cried Cushing’s Disease
Well folks, in a bizarre plot twist that no one saw coming , least of all me… my tumor removal surgery that was scheduled for just a few days from now has been postponed and/or canceled until further notice because well… I will be honest… the doctor’s really don’t know what the f*ck is going on. Yep, I said it.
Just a few days ago, I had what I thought was going to be a meet and greet and pre-surgery consultation with a new neuro-endocrinologist that works with my neurosurgeon. What transpired during that appointment was something that I could have never predicted. As I sit here typing amidst a pile of very generous “surgery recovery gifts” bestowed upon me by my friends and family as well as read back through everyone’s well wishes via text and on social media, I feel pretty ridiculous. I am also feeling shock and a bit numb because as I said - I could have never anticipated this curve ball.
I had not previously worked with this doctor because when this whole blessed journey began, I was being cared for and directed to my treatment options by a completely different hospital system. I was originally scheduled to have surgery at the first hospital after my diagnosis from my previous endocrinologist but then thought it might be smart to get a couple of other opinions. After all, this was as I mentioned before… brain surgery adjacent. I felt it deserved some due diligence to say the least.
I interviewed a second endocrinologist and three other neurosurgeons from four different hospital systems, literally combed the internet for yelp reviews and solicited referrals from people like I was hiring a contractor to do a repair job at my home, and sought out advice from friends connected to the medical community. Through this process, I found that the one surgeon I ultimately chose performs this procedure with the most frequency in the area. He also was the only one that worked with a special neuro-endocrinologist to work with for aftercare. No other hospital system offered that service or level of expertise to navigate the process after the surgery. Since the post-surgery process to get my body working again was expected to be a long road, I was sold on getting targeted care so I canceled the first surgery, signed on with the other hospital system and shifted gears.
It was going to take a couple of extra weeks past my original surgery date to get on this new surgeon’s schedule, but as I said he was the most experienced in the area and it seemed like a small price to pay for all of the benefits that working with this team of doctors would provide. I had lived with this for a year and a half, what was extra two weeks!? I happily made the switch, adjusted my expectations of when the surgery would occur, plotted and planned with my tribe for the weeks ahead and moved forward. I was blissfully unaware for a few weeks that things would change so drastically at the 11th hour.
So on what was to be my first surgery date, I hopped on a zoom call with the new neuro-endocrinologist instead to meet her for the first time. She first asked me to recap my health history, symptoms and testing leading up to my diagnosis and decision to have my pituitary tumor removed. She listened, asked a few questions along the way, then took a deep breath, looked into the camera and said, “Cara, based on all the data from the labs and diagnostic tests you have had, I don’t know if this tumor is actually causing these problems.” I was speechless.
She went on to explain that 20% of the population has a pituitary tumor of some sort. The question in my case was - was it active (causing me to have Cushing’s Disease) or inactive (not causing my symptoms and perhaps there is another source or reason for these symptoms). She said that in looking at all the data - it was not clear to her with absolute certainty that my tumor was to blame because a lot of had produced inconclusive results or had not collected all of the data that they should have. Yet somehow all of the other hospital systems had pointed me towards surgery. Again, I was speechless.
I think you could have knocked me over with a feather at that point. Here I was on the exact date I was supposed to go in for this major, invasive, dangerous surgery and now I was hearing that what they had planned to remove may not be actually causing the problems I was trying to resolve? A million what-if’s flooded into my head.
What if I hadn’t gotten those additional opinions? What if my friend hadn’t pushed me to go to this hospital system for a second opinion? What if this exact doctor hadn’t been assigned to me and been so diligent about looking at the bigger picture? I was spinning.
As I continued to listen to the doctor, her reasoning and her recommendations - I realized she was taking a whole picture approach that no one else had up to this point. Every other doctor gave me their best recommendation in their area of expertise but were not connecting the dots in between one piece of the puzzle and the other. Even more impressive was that this doctor had a plan. She wanted to examine me in person which no one had recently and run more labs and more tests. She told me to come to her office in 2 days, no appointment needed - just show up and she would see me no matter what. Now when was the last time anyone got that kind of service in the medical field? She assured me that we would figure this out together and I felt like she really meant it.
The next day I went through the motions of going to my actual pre-surgery consultation with the neurosurgery team. I heard all the scary things that could go wrong in surgery, got the low down on how to prepare for the procedure, the hideous recovery process then I had about a gallon of blood drawn and had another CT Scan of my head. But in the back of my mind, I was still reeling from the news that was delivered to me the previous day.
As I shared the news with my inner circle, I got pretty much the same reaction from all of them. WTF?! was the consensus. The Wook said to me when I called her, “Gee Gayle. That’s a lot.” To which I responded, “Well I thought it deserved more than a text.” Then we laughed as we often do at the utter absurdity of the situation. You can’t make this stuff up people! In my other exchanges, several people asked, “How do you feel about this news?” to which I could only reference one of my favorite British terms… “Gobsmacked.”
Two days later, I met with the neuro-endocrinologist in person. She spent almost an hour with me talking through things, examining me and answering my questions. She had dug even further into my health history since we had met on Zoom two days prior and identified that this tumor had been there since an MRI I had done in 2015!!! - however the radiologist that read the scan never mentioned it in the results. Again, she found information that no one else had so my confidence in her diligence and expertise continued to build. The good news was that my tumor hasn’t really grown much in 9 years. I took that as a win.
Following my appointment, she called me that night while I was making dinner. She asked how I was doing and apologized for throwing this curve ball my way. I stopped her and said, “Do not apologize for any of this! You could potentially be saving me from having a surgery I didn’t need that wasn’t going to resolve my issues. I am so grateful for you!” We talked through the next steps, labs she wanted to do and my feelings about all of it. As we wrapped up the call, I realized that she had spent hours on my case alone today and I was humbled by the amount of attention she was giving me.
That evening, after two days of complete turmoil, emotional highs and lows, and complete flabbergastion (is that word? if not, I am making it up and claiming it as my own) this weird sense of calm washed over me like a wave. What’s the harm in waiting? This is not a terminal condition. Again, I have waited this long - why not be absolutely sure before moving forward with anything more that is invasive. I felt at peace with it all and breathed a sigh of relief. I then started the next day with a fresh new plan and course of action.
So as I have been running around town and blasting all over social media “I have Cushing’s Disease caused by a pituitary adenoma!” … I now feel like the boy who cried wolf. In my defense though, I was trusting the experts so I am trying not to be too hard on myself. I thought I knew where I was headed but the universe thought differently. I am grateful for the outpouring of support both near and far that came my way and maybe in some small way the positive energy helped lead me to this.
I also have taken comfort in the fact that my first post about what I was going through may have helped some others in their health journey! I heard from one friend that read my post and was having similar symptoms but wasn’t sure what next steps to take with her medical care. I gave her my best advice and the information I had gathered. I also heard from another friend that she too had a pituitary tumor that was noted on a private scan a couple of years ago but that her primary care doctor had not followed up on it. Again, I shared what I knew and she sought out a specialist. None of that can be discounted in my book!
So what’s next you ask? (Or don’t because you think I’m nuts and have stopped reading or listening at this point.) The answer is I really don’t know. I have stopped trying to predict how this is all going to go and am taking it day by day. All I know is that I have some version of Cushing’s Disease or Syndrome, that I am waiting on labs, have a few more tests to go and then we will figure out the next steps from there.
Pivot!
Today I sit with the unknown of what is next and wait. It reminds me to refer myself back to one of my three words I chose for the year. (See 2024: In Three Words). Pivot! This is definitely a pivotal moment in life for sure.
When I shared my diagnosis (or what I thought my diagnosis was at the time) in my Cushing’s Disease: What a Delightful Journey entry, I quoted Walt Disney and his famous line about paths in life. As I referred to one of my favorite books of quote collections while journaling the morning after this medical revelation by my doctor, I was surprised to see that the quote of the day was from my favorite poet since high school and was also about paths. It read:
Do not go where the path may lead, go instead where there is no path and leave a trail.
- Ralph Waldo Emerson
Thanks Ralph. I needed that. You have never steered me wrong before. I am grateful that this doctor is finding a new path for me, and perhaps together we are leaving a trail. I will keep y’all posted on what I find along the way. And as I said before…Let’s keep moving forward on this journey of life and health everyone.
