March 13, 2020.
Friday the 13th, no less. I still remember the hint of uncertainty in the voice of the surgeon’s administrative assistant when she called me to tell me the date that my surgery had been scheduled. There are probably a fair number of people who would have turned down a surgery scheduled for a Friday the 13th, but I was desperate to get rid of the tumour that had turned my life upside down, and I had no such superstitions.
I’ve written in various places about my life with pheochromocytoma, my journey to diagnosis, and how my life changed afterward. But it’s still a topic that I find myself thinking about regularly, a topic I have more to write about, and a topic I want to keep writing about. One reason is that my pheochromocytoma posts receive regular visits from Google searches literally around the world. I have a feeling that they’re being read by people searching for their own diagnosis, people who have just received their own diagnosis, people who are wondering what’s going to happen next.
That’s certainly something I did. The night I got the first lab test results that indicated that the underlying cause to everything was in all likelihood a tumour in my adrenal gland, I Googled the heck out of all things pheochromocytoma. By the next day, I could have told you what diagnostic imaging was available and what was preferred by doctors to confirm the diagnosis, how an adrenalectomy was performed, and what studies said about the correlation (or lack thereof) of tumour size to symptoms. But while I did my fair share of Pubmed reading, I also read every story that I could. How were people’s symptoms similar to mine? How were they different? How did people get diagnosed? Did they also have such a hard time getting a diagnosis? (yes, they did.) What had been their experiences in surgery? What was their recovery like?
Today, two years after a life-saving and life-changing surgery, here are a few of the reflections I’ve had recently.
One: I’m one of the lucky ones. My surgery was completed laparoscopically and went incredibly well. Don’t get me wrong – I felt like I’d been hit by a truck afterwards. Laparoscopic surgery is still surgery. But I was left with three small incisions that healed well. Pathology and post-operative monitoring left no reason to suspect a malignant tumour. (With pheochromocytomas, it is notoriously difficult to discern a malignant vs benign tumour, and really, the only reliable sign is metastatic cancer that has begun to grow elsewhere in the body.) Follow-up genetic testing so far hasn’t revealed any genetic cause, which is incredibly fortunate because it reduces the likelihood of my remaining adrenal gland developing another pheochromocytoma. Following other pheochromocytoma patients through social media has given me a window into the experience of living with a malignant pheochromocytoma. Sometimes when I read their stories, I can’t believe that I got to have surgery and never look back (except reflectively). I can’t imagine what these patients go through day after day, year after year.
Two: I know I’m lucky. Really, really lucky. But I don’t always feel lucky. I wrote in my very first blog post about pheochromocytoma that my journey had started four years previously. But it became really obvious once I started losing symptoms that I had actually been living with the tumour for something more like ten years. Facebook memories continually remind me of just how much my life was disrupted by constant, ever-evolving, and ever-increasing-in-awfulness migraines. To think about ten years of life affected in this way – it really sucks. It’s great to have good health to enjoy now… but what would my life have been like without those ten years of awfulness? And that’s just the physical side of things. I have done a lot of emotional healing post-surgery. But I’m still not completely healed from the trauma of this experience. I keep a very close eye on points of data that might indicate a tumour recurrence. Sometimes when my resting heart rate is high, I need to take some deep breaths and remind myself that I just had Covid, or that I literally didn’t get a chance to sit down during the day. (My resting heart rate dropped 30 points after surgery. Since my watch gives me this data daily, it’s easily accessible to monitor.) After years with headaches happening almost daily, the change to being headache-free was shocking. But it makes it hard to have a headache now without wondering what’s causing it. I also have bloodwork done annually to monitor my metanephrine levels. It’s hard not to worry while waiting for these results. I am working hard at living in peace and not in fear. But it’s hard work.
Three: I wanted a story to be able to explain things. I had been so sure that I would receive news from genetic testing that the cause for my tumour was genetic, that it was very unsettling to receive the news that there is (so far, at least – genetic testing for pheochromocytoma is still a relatively nascent field) no genetic mutation that explains my tumour. My surgeon had been quite sure I was a genetic case. My age alone made it likely. I was so unsettled after speaking with my genetic counselor that it took me a little while to realize this was actually good news. A genetic mutation would reveal the cause for my tumour, but it would also point to likely recurrence or future follow-up needed; it would plot the path for monitoring. Instead, I need only the most basic – my annual metanephrines test. No fear of another endocrine system failure in the future (à la MEN 2, definitely the scariest possibility). Definitely not von Hippel-Lindau – very good news. Et cetera, et cetera. Go down the list of mutations and their scary consequences… and I was glad to have avoided them. So why was I so set back? It took a while for me to realize that the genetic mutation story was a story that I could tell to make sense of my experience. Yeah, it would suck. But the tumour would have had a cause, and I had received the treatment, and we could all wrap things up with a nice bow. But now I have no origin story. My body grew a tumour just because. And can you ever really trust your body again after that happens?
Four: I am indeed learning to trust my body again. I’m still working on trusting that I won’t grow another tumour. But there was another area that I needed to learn to trust my body and the messages it was giving me. For more than four years before diagnosis, I had gone to my doctor again and again with new symptoms and irregular blood work, and I was shrugged off each time. Yes, your platelets and white blood cell counts are high, but they’re not that high. That shaky feeling? It’s not blood-sugar related. No need for any further follow-up. By the time that I was visiting the emergency room, I was given the message implicitly that I could not be counted on to explain what was happening, or that I was exaggerating, or that I was wrong about the severity of what was happening. Sometimes the message was explicit – like on one visit where three different medical staff members told me that perhaps I was just experiencing a panic attack. One side-effect of these messages were to make me stay home from the hospital when I had a pheo crisis. It was so miserable to be in the hospital and not be believed, and they didn’t do anything to help, anyway! It was the belief that I might not actually live through the episode that finally sent me back to the hospital the time that I finally met the right doctor who made his miraculous diagnosis.
Years of learning to ignore my body’s truths isn’t undone overnight, but I’m working on it. It’s helpful when I have a headache to be gentle with myself, to treat my body with kindness, to believe the message it’s giving, and to be curious about the cause, which of course helps with the fear of recurrence anyway. In many ways, the physical healing was the easy part. Remove the cause of the extra adrenaline in my body, and my hormones all normalized, and the cascading consequences of their imbalance slowly (or quickly, in some cases!) disappeared. The emotional and mental healing require more time. And I think it’s okay to take my time. My body will always bear three little scars along my back, the only outward signs of the surgery from two years ago. What emotional and mental scars I will always have yet remains to be seen. Just as my physical scars have lightened month after month and are continually less noticeable, so too will my mental and emotional scars continue to grow lighter and less noticeable.