The school year started the way it always does – first for teachers, then for students. I spent two weeks re-organizing my classroom, printing a few last pages from the unit I had rewritten during the summer, excitedly greeting coworkers as we saw each other for the first time after the summer, in meetings, in more meetings, frantically trying to get last minute details ready before the open house where I would welcome students and parents into my classroom before the first day of school.
It was the whirlwind it always is. Seriously – it is never not a whirlwind. But things came together the way they always seem to, and I enjoyed meeting the new students I would be teaching. I went out for a late dinner with friends, even ran into a friend from church and stayed for quite a bit longer talking to him after my friends left while he was waiting for his food, and then went home to fall into bed, exhausted.
I woke up the next morning feeling absolutely awful. I assumed it was a migraine. It wouldn’t be unusual after a stressful and very busy week where I hadn’t been sleeping well to end up with a migraine. I took some Advil and went back to sleep.
I woke up an hour or so later and immediately realized with a sinking feeling that it was NOT a migraine. My hands felt shaky and I was jittery. I didn’t have any chest pain yet, but I knew after so many times through this routine that it was only a matter of time until my chest would tighten so unbearably that lying down would make each heartbeat physically hurt and would keep me awake no matter how desperately I tried to sleep. Then, sooner or later, the vomiting would start. It didn’t matter that I wouldn’t eat anything after the shaking started in an attempt to mitigate how awful the vomiting was. Something had set the symptoms in motion, and there was nothing to do besides wait them out. Wait in absolute misery.
I decided not to go to the hospital. I was frustrated with my experiences with the health care I had received up to this point. I knew from experience that a visit to the ER would mean defending myself to various doctors and nurses. I wondered if I would be told yet again that I was probably “just having a panic attack”. I would be given numerous tests, none of which would reveal what was wrong. I would have to endure the time at the hospital miserably trying not to vomit in front of complete strangers, receiving nothing that actually helped the chest pain, until hours later it dissipated enough for me to be discharged and call a friend to come pick me up, taking with me a handful of referrals to give me some small hope for a future diagnosis. It was so awful being horribly sick in the hospital and not getting any noticeable benefit that I decided not to go at all. I decided I would rather be sick in the privacy of my own home and just hoped that the one specialist appointment I had lined up for later in the fall would provide the answers I so desperately wanted.
By late afternoon, the vomiting had started. It was pretty early in the cycle for vomiting, actually. The symptoms seemed to be getting worse with each mysterious bout I had. I had thrown up for 16 hours the last time… how much more awful could it get yet? I sat down on my living room floor and cried. I absolutely despaired of ever finding out what was wrong and of it ever getting better.
Half an hour later I was gasping for breath and brushing tears off my face yet again, these tears squeezed from my eyes by the sheer force of the vomiting. I tried to massage a cramp out of my ab muscles. I honestly wasn’t sure I was going to survive through symptoms that kept getting worse and worse. It was past time to go to the hospital, and I would just hope to end up with a doctor who a) actually listened and b) had any clues about what was wrong.
And miraculously, that is what I ended up with.
But not quite right away.
Actually, I really can’t fault my first ER doctor at all. He was extremely compassionate, and he listened carefully and never suggested it was stress or a panic attack. In fact, he looked through my bloodwork and enumerated my irregular results, explaining that while vomiting can elevate your blood sugar, it can’t elevate it that much. And while stress can cause some elevated white blood cell count, mine was way too high to be caused just by the stress of a new school year and a hectic two weeks of work. Etc, etc.
By this point in my health journey, I was carrying around a file folder with every blood test I’d had that had been irregular, every hospital procedure, all referral paperwork, every test that had been run, all the files related to health. I also had a notebook where I had carefully recorded the dates of each episode, the symptoms I experienced, the notes from each doctor I had seen in the hospital or in referrals. I pulled it out to refer to when answering one of the ER doctor’s questions. He pulled up a chair beside my hospital bed and started paging through, asking me questions, flipping to the pages I would indicate. He looked and listened and asked for about fifteen minutes. He left to check a few of the tests he’d had run, and then he came back in and sat down again.
“Something is definitely wrong,” he said. Tears immediately began to make their way down my face again, just sheer relief at being acknowledged and believed. “I don’t know what it is, though. We need someone smarter than me involved. I’d like to keep you here for a bit so you can talk to another much smarter doctor, is that okay?”
I nodded, not excited about spending more time in the hospital, but happy to wait if it meant another doctor who would take me seriously and possibly have some ideas. I was prepared for an overnight in the hospital – over the last year of ER visits, I had started keeping a hospital bag prepared, waiting by my front door for the next time I would need it, sort of reminiscent of the hospital go bag a pregnant woman might keep, only to be grabbed with a whole lot less joy and anticipation. I had an eye mask, ear plugs, a portable battery for my phone, a book, sweatshirt, change of clothes. I was set for the night.
Sunlight would have been peeking over the horizon by the time that I met Dr S, not that I got to enjoy it in the windowless ER patient room I was in. I assume that Dr S had been briefed by the referring ER doctor, and maybe he had already glanced through my charts. But he came in and listened to my story. Although I was used to telling it to doctors and could keep it as brief as possible to make it through without interruptions or losing attention, Dr S clearly didn’t need my abbreviated version. He asked question after question. He took thorough notes, looking at my notebook and carefully recording the dates of episodes that I had written there. He looked at my files and checked various test results, asking if I’d had this test or that procedure done. I told him how frustrated I felt so far – if I could get doctors to look at my bloodwork when I was in the hospital, each doctor would inevitably conclude that there was something wrong. But it felt like by the time that I felt better after each episode, the window had closed to figure out what was wrong until the next episode. Dr S reassured me that that was not the case, and there were, in fact, tests they could run when I was feeling fine that would still help us out. He told me he wanted to take a few minutes to read through everything else in my files and left for a bit. I dozed again.
Dr S came back about an hour later. He had a few more follow up questions. Then he explained: “It’s Labour Day weekend. I have some tests that I’d love to run, but getting them done promptly on a holiday weekend won’t happen. You look like you’re feeling significantly better than when I first saw you. Would you like to stay and have tests run, or would you like to go home and come back for an appointment to see me?”
It was true. At some point in the early morning hours, my chest pain had started to subside, as they always did, even without any treatment. The vomiting was successfully controlled by the medication the hospital had given me, and the IV was helping solve my dehydration. (The only two benefits I ever felt like I got from ER visits was to mitigate dehydration and get meds to help the vomiting end faster.)
It was a holiday weekend. I was hoping to drive to my parents’ place to celebrate my dad’s birthday and be away from school before jumping into classes the following week. I was also exhausted. Despite using my ear plugs and mask overnight in the hospital, I had lain awake for a long time in an unfamiliar bed, was awakened when wheeled over to radiology for an X-ray, or awakened by the blood pressure cuff as it tightened on my arm every 15 minutes. I knew I would sleep better at home.
“I see patients at the hospital on Tuesdays. Could you come in this next Tuesday and we’ll talk about how to move forward?” Dr S asked.
I grimaced. Tuesday would be the first day of school. I explained how I would rather not miss that first day and asked if it would be okay to see him the following week instead. (This is a curious part of having my ill health show up in the pattern it had. As desperate as I was for an answer, I knew I would be more or less okay for at least a month since I had just had a major episode. Delaying a doctor’s appointment for a week was a risk easily worth taking in order not to miss the first day of school.) Dr S said he could understand how important it was to be at the first day of school and told me a delay of one week would not be an issue.
A nurse came in to remove my IV. Dr S returned with a prescription he wanted me to start immediately. And he gave me a piece of paper with a word on it, a condition that he wanted me to look up to see if it resonated. Pheochromocytoma.
After months of ER visits, tests, and specialist appointments, Dr S gave me the name of my condition the first time that I saw him.
Of course, it still took a few more tests and imaging to confirm, but looking back, I am so impressed that he looked at the same clues that so many other doctors had seen and was able to put them together in a new way.
I texted another friend to see if she was awake and could come pick me up and drive me home. Then I changed from my hospital gown back into my own clothes, this time opting to leave the heart monitor stickers on my skin until I got home. Despite the allergic reaction springing up under each sticker, it was easier to keep them on until I got home. I knew from experience that taking them off at the hospital would just mean that by the time I got home, my clothing would be covered with the sticky gel residue that coated each sticker. An EKG technician at the cardiologist had given me the helpful tip earlier that summer that oil – any kind, even vegetable oil or olive oil usually reserved for cooking – would help that residue come off. I had a bottle of bath oil in my shower just for such occasions.
I got home and texted my parents to say I wouldn’t come home until the next day. I ate some applesauce that was regularly stocked in my cupboard for post-episode rehydration and some nourishment my body would be able to handle. I hadn’t had anything to eat in more than 36 hours, and I had lost 11 pounds in that time, at least before my hospital IV started my rehydration. And then I fell into bed and slept for some 8 hours.
And that was my last ER visit for pheochromocytoma. By the end of the month, I had the first lab test results that indicated that Dr S’s hypothesis was correct. By the end of October, I had an MRI, and in early November I sat in a hospital exam room and cried when Dr S told me that the MRI revealed a small 2cm3 tumour on my right adrenal gland. I think he was a little concerned about my emotional state when I started crying, but I told him I was just so absolutely relieved to be reassured that we had a clear and definitive answer and clear path ahead now.
That appointment was actually the last time I saw Dr S. He had already referred me to an endocrinologist who would refer me to a surgeon, and I was officially transferred from his care to the endocrinologist upon official diagnosis.
My endocrinologist and surgeon are both excellent doctors and lovely people. But Dr S is the star of my story even though I was in his care for just over two months. He really felt like the first doctor to take me completely seriously and believe my story enough to investigate fully. I know my veterinary doctor sister would defend the other doctors I saw, saying that partly enough time is needed just to establish a pattern that a doctor can follow, enough evidence of the right kinds of symptoms. But Dr S was different from the other doctors I saw on my other visits. He is the kind of doctor that I hope anyone on their own difficult and mysterious health journey ends up with.
Small things that he did made such a difference. On that first Tuesday non-ER appointment that I had with him, he asked me for my email address and sent me an email from his hospital account so that I could send him an email (and didn’t have to worry about misplacing a business card with his contact info). By the end of September when my lab test came back indicating high metanephrine levels, I sent him an email telling him that the results were in and were abnormal, asking what that meant for our next steps. He didn’t have an appointment time available that week and asked if we could talk by phone instead. I reminded him that I was a teacher and asked if it was possible that he call within a certain time frame when I wouldn’t actively be teaching my class (recess time and a prep period, if I recall). He was in a meeting until just before the end of that window of time but called me while walking back from his meeting, apologizing if I could hear the wind outside on his end because he was still walking back to his office.
I am such a fan of universal health care. I know that our healthcare system is sometimes mocked by Americans as being inferior care for longer wait times. I would absolutely argue in favour of it, having gone through countless hospital visits, doctor’s appointments, tests, and a surgery and overnight stay in the hospital with a final bill of $0, paying only my insurance co-pay for my medications. I can’t imagine going through the stress of being sick while also worrying about how I would pay for my appointments, inevitably deciding not to go to the doctor because I couldn’t afford it. I also can’t imagine being sick and worrying about my illness interfering with work to the extent that I might worry about job security and therefore health insurance coverage.
That said, I think some of my experiences with the health care system were because it is a system, not designed for individual cases. There are things that it is great at, and there are places where it needs improvements. Doctors are overworked, responsible for more patients than they can care for well. If I think about Dr S and what set him apart, it makes me think about the equivalency in my own work as a teacher. When I forgot to think about my students as individuals, each student created in the image of God with hopes, dreams, fears, abilities, and instead thought of my work as tasks to complete, systems to set up, things to get done, it was inevitably my students who suffered – and my relationship with them. In the system of health care, to many of the ER doctors I saw, I was an item on a checklist, a patient to see before going home, a set of tests to run, and when they were ready to leave and there were no answers yet, I was given a handful of referrals. I was an individual to Dr S. I was a person with a unique experience and story.
May all of us, in whatever our work is, have eyes to see others as the individuals that they are, made in the image of God, with hopes, dreams, fears, abilities. Especially during a global pandemic when fear so easily rules our actions, may we see others as the humans they are. May we take the time to get to know them, to understand their hopes and fears, to celebrate their dreams and abilities.
If you’ve made it this far in the story, congratulations! I feel like a lot of what I’ve written here and on social media lately has been pheo-related, but it has been a major, MAJOR part of my life, and writing about this experience has been hugely cathartic. If you’ve read my earlier post “Life After Pheochromocytoma”, then you have some idea of how drastically a diagnosis and surgery has changed my life.
I want to end with something that might not apply to many people. But if you’ve stumbled across this story while in the middle of your own medical mystery, I want to offer some pieces of advice and hope. This advice can probably be found in lots of places online, but it might be helpful to read it in the context of my story, or hear it again, or it might perhaps even be the first time you’ve come across such ideas:
- Be your own advocate. No, you shouldn’t need to be. But sometimes you have to advocate for yourself more strongly than should be necessary. Doctors are busy. They also aren’t experiencing your unique symptoms. You know yourself. Trust what your body is telling you. Insist on being listened to and taken seriously. If you are not taken seriously, find a doctor who will take you seriously.
- Make documentation. It is so helpful to be able to refer to dates, records, and notes in order to be taken seriously. It is also helpful to look back at notes after an appointment or hospital visit because sometimes hospital visits are a blur. You’re not necessarily feeling your best.
- Take good care of your mental health. Not being believed is incredibly frustrating. Starting to not trust your own body is even worse. Do what you can when you can. Don’t feel guilty for the things that you can’t do when your body doesn’t let you.
Edited to add:
If you would like to hear a conversation that encapsulates my ideas of different kinds of doctors and medical experiences, check out Kate Bowler’s conversation “Medicine with a Soul” with Victoria Sweet on her podcast Everything Happens.