Roughly fourteen months ago, as I flew to Houston for a consult with a surgeon at MD Anderson, I found out another Cushing’s patient had just had her surgery in the same place. She had the same endocrinologist as me and the same surgeon. I had been following her case with much interest, as she was a few steps ahead of me in the process and I hoped to get some sense of what was to come for me by following her progress.
I didn’t know much about this patient at this point beside some basic information. She lived very far from me, she had a family and I knew she had had Cushing’s for a very long time. She was a regular member on the Cushing’s Help boards that I had recently joined and had lots of advice for us newbies on testing and symptoms. And now, she was literally a mile away from me, recovering in a hospital bed after having the same surgery I was about to have myself. It was such a strange experience hearing about her post-op surgery experience that week. As I would later discover is very typical for her, she was even offering helpful tips for other pre-op patients from her hospital room.
It was during this time, I connected with this patient and we went from being two patients to two friends. We were in constant contact during recovery, sharing the details of how we were feeling, what our bodies were going through, our fears and our frustrations. We are still in contact every day. I have had the opportunity to learn about her family, I have met her husband, I have hugged her.
Even though we had exactly the same diagnosis, the same doctors, the same procedure, in the weeks following our respective surgeries it was clear we were heading down different paths. While I had clear signs of remission – I was sleeping at night, my “brain fog” was gone, I had trouble weaning off replacement steroids – the initial signs were that my friend was not in remission. She was able to wean herself off replacement steroids very quickly and many of the troubling signs of Cushing’s had not disappeared after surgery. It was devastating.
Through all of this, she kept a stiff upper lip. She shared her experiences with other patients so they could learn from what was happening to her. She encouraged and cheered for me and the patients that had surgery and recovered in the ensuing months. And she kept trying to sort out what to do about her own situation at the same time. She handled the whole thing with grace, as I would learn is her way with pretty much everything.
The whole thing made me feel terrible (poor me!!). It felt so wrong that this lovely woman had suffered so long only to find out the surgery didn’t work and she would likely have a long road ahead of her to get better. And here I was, dealing with Cushing’s intensely for about a year, waltzing in for surgery and waltzing out. I had a serious case of survivor guilt. It just didn’t feel right that we both didn’t get better. And if anyone was going to stay sick, it should have been me. She did her time. Compared to what she went through? What happened to me was nothing.
A full year later, we are both struggling. She is now dealing with growth hormone deficiency, a potential complication from pituitary surgery. I am dealing with…well, whatever my crap is. As perverse as it sounds, I feel a little better knowing I am still in the trenches with her. We aren’t quite fighting the same battle anymore, but at least I don’t feel like I left my fellow soldier on the field. Hopefully a year from now, we will be sitting around a campfire somewhere, swapping battle stories and more importantly talking about all the fun and wonderful things we are doing now that the war is over.