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My Last ER Visit, or In Praise of the Right Doctor

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:

Advice

  • 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.

Posted on by bethanypasma

Flight

There’s something so magical about flying. 

 

To think of this hunk of metal filled with people and weighed down with stuff as it hurtles down the runway, groaning as it heaves itself into the air, but then suddenly soaring…

It fills me with wonder. 

 

I am not one of those people who keeps reading during takeoff. No – a window seat for me, please. I press my nose against the glass and mentally gasp at all the sights. 

I don’t ever want to become one of those people who doesn’t press their nose to the glass. I don’t care about the opinions of others either, so I will continue to gaze about and gasp, sometimes audibly. 

While I was on jury duty, I was often in the corridor for air traffic on its way to the airport. Planes would fly overhead, not too high off the ground. One day I stopped at a nearby Shoppers Drug Mart on my way home. As I stepped back out of the store, I was suddenly engulfed in a shadow, and then a split second later, back in the sun. As my heart pounded, I tried to figure out what had happened. It was the shadow of a plane that had scared and then delighted me so. What a world we can live in, where we can experience this wonder and delight!

Sometimes when I fly, I think of that moment I experienced on the ground. Flying from Toronto to New York City a few years ago, the plane’s shadow was clearly visible on the ground below. I watched it for quite a while, racing along below us, as it temporarily engulfed houses, cars, boats in shadow. Did anyone down below feel that sudden flash of fear and then wonder? 

Right at this moment, flying anywhere feels like a far off dream, too dangerous and with nowhere I’m allowed to go. But I will still remember and smile at my memories of flight. 

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On Fathers

As a young girl, my family took many trips and vacations together. We would arrive somewhere and the family would begin climbing out of the van. No matter where we were, no matter what we were going to do, I would run up to my dad, grab his hand, and say, “Guess who?!” He never needed to guess, because he always knew it would be me.  We would wander around the museum, or park, or down the beach, and my small hand would stay in the strong, calloused hand of my father.  

 

Now that I am grown, I imagine my Heavenly Father often in terms of my relationship with my dad.  I imagine running up to Him, grabbing His hand, and calling out, “Guess who?” And, of course, my omniscient Heavenly Father does not need to guess, but I imagine the delight that it brings to His heart when I come running. We walk side by side through life, my small hand in His strong one.  

 

For I, the Lord your God, hold your right hand;

 it is I who say to you, “Fear not, I am the one who helps you.” 

Isaiah 41:13

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Life After Pheochromocytoma

I had an adrenalectomy on Friday, March 13th. Yes… Friday the 13th. My Grumpy Cat calendar was so appropriate for that day that I saved the calendar page and have it hanging on my fridge.

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Many of you have probably read my post “Life with Pheochromocytoma”. I know that my dad has practically been my publicist as far as that post goes, telling lots of friends and extended family members that they can find some insight into my experiences if they search for that post here on my blog. 

But my life has changed so significantly in the five weeks since my surgery that it is definitely time for another update, this one celebrating all the ways that my life has changed. So here we go: Life AFTER Pheochromocytoma. 

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Ready for surgery! Feeling so fortunate to still get into surgery just before hospitals postponed elective procedures.

First off, I feel INCREDIBLE! I can’t describe strongly enough how healthy I feel, how full of vitality. It turns out that living with a tumour for 4+ years really changes your baseline for what healthy feels like. For weeks 2-4 after surgery I would wake up, sure that I couldn’t feel better than the day before, only to be amazed at feeling better than I could remember feeling ever before. There was the obvious post-surgical recovery feeling better that I expected, but more than getting over incision pain and sleeping off side effects of anesthesia, I felt better, healthier, stronger every day. 

 

By every measure that I can take, my health has improved since surgery. My resting heart rate dropped 30 beats per minute in the five months that I was on alpha blockers, but in the weeks post surgery, even without any medication now, it has dropped 8-10 bpm further. Unlike many people with a pheochromocytoma, my blood pressure was never shockingly high. But on medication, I was getting readings generally in the 120s over 70s. Now it’s more like 95 over 65 – lower than most of the readings I was getting in the two weeks before surgery when my medication dose tripled! 

 

Since I’m not on medication any more, I don’t have the frustrating side effects that come along with pharmacology. Alpha blockers generally cause nasal congestion, and with the tumour, any decongestants (whether for the side effect or for a cold) were strictly off limits. After a couple of weeks without surgery, that congestion completely disappeared. I also had trouble with swelling in my feet and ankles, and this was particularly noticeable once my medication dose tripled. That has totally disappeared since surgery!

 

Of course there were my somewhat regular symptoms – a strange shaky feeling, an internal anxiety, a major spike in heart rate if something scared me, the inexplicable feeling that I attributed to blood sugar issues. They are all completely gone. I haven’t had any lab work done since surgery, especially given the COVID crisis, but I am completely sure that my adrenaline levels are back to normal just given how I feel. 

 

Those regular symptoms were pesky but didn’t feel life threatening – not like the massive spike in adrenaline I experienced every other month or so. I can only say what a relief it is to know I will never experience another one of those. I will never wake up again only to dread the next 48 hours, knowing the inevitability of worsening chest pain, tremors, hours of vomiting. It is an immense relief not to have to have the inner debate about whether or not I should go to the ER. (Even pre-diagnosis, it was an inner debate. I hated going to the ER when it meant being told that I was having a panic attack, when there was nothing that really helped me feel better, when I left with more questions than answers, and when the only positive things were being hooked up to a heart monitor and IV and knowing that at least if something went drastically wrong I was already at the hospital.) Especially in the midst of the current COVID pandemic when going to the ER feels scarier than staying home, it’s such a relief to be free from worrying about when the next episode will occur. 

 

During major episodes, especially pre-diagnosis, ECGs showed a temporary heart arrhythmia called Long QT. I made several trips to a cardiologist, did a stress test, and wore a holter monitor for a long weekend. Now I am empowered knowing that despite the stress to my heart during the major episodes of adrenaline, my heart is healthy and wasn’t damaged by the tumour. In fact, now, without the tumour, I can actually get my heart rate up during exercise without feeling like I’m endangering myself. 

 

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No more holter monitors! I wore this one for 72 hours on a weekend when my family went to the beach. No swimming for me! And my poor skin is of course allergic to the stickers…

I want to end by noting how incredibly fortunate I am and how blessed I feel for the timing of my surgery. COVID19 was declared a pandemic by the WHO on March 11. On March 12, the Ontario government announced that schools would be closed for two weeks after March break. My surgery was on the 13th. Two days later, the Ontario government announced that it would be asking hospitals to cancel elective surgeries to clear hospital beds for the impending COVID crisis. Elective surgeries aren’t surgeries that people are choosing to have, by the way. They are non-emergency surgeries – surgeries that are scheduled ahead of time. My post-op appointment ended up happening through a phone call with my surgeon, and when I told him how fortunate I felt just to have actually had my surgery, he told me that even his cancer surgeries have been postponed indefinitely. Knowing how I felt in the time leading up to surgery, I can only imagine what it would be like to have had a surgery delayed and not to know when it will finally happen. I can only imagine what my mental health would be if I were once again waiting and fearing for my health in the meantime. I empathize so deeply with anyone in this situation. 

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Please enjoy this picture of me with my sister just hours after surgery. Barely conscious, extremely groggy and nauseous. Last time feeling this bad because of the pheochromocytoma!!!

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Emmaus

The sun is already past its highest point in the sky by the time we set out. The air is hot and dusty, and I can feel the heat of the road through my sandals. Cleopas and I had meant to set out earlier, but the morning had been… strange. 

Scenes from the last week flash through my head. 

Palm branches waving as voices shout Hosanna! Tables of money changers flipping over in the temple as the teacher declares, “My house will be a house of prayer!” Crowds following us as we follow the teacher. Quiet moments with Jesus on the Mount of Olives, as he teaches us strange and mysterious things. 

Celebrating the Feast of Unleavened Bread. Jesus lifts up a piece of bread, breaks it, and says, “This is my body, broken for you.” A cup. “This is my blood, poured out for you.” 

Soldiers in the garden. Pilate, washing his hands. The nails. The cross. A final spear thrust from a soldier; blood and water pouring out. Darkness descending over the land. 

Darkness in our hearts. 

 

For quite a while, the only sound is the plodding of our footsteps. Cleopas and I are in no hurry. Certainly, we have been away from Emmaus for longer than we intended; the events in Jerusalem three days ago kept us beyond the Passover. And then suddenly it was the arrival of the Sabbath and we could not travel home. I think back to the Sabbath prayer. Peter’s hands shaking as he lit the candles. His voice shaking, too, as he sang the blessing. “Baruch ata Adonai, Eloheinu Melech ha-olam…” Blessed are you, Lord our God, Ruler of the universe…

I hold so firmly to this conviction, that Yahweh is indeed ruler of the universe. But I no longer hold any certainty over what his plans may be. Last Sunday crowds gathered around us to shout Hosanna and it seemed as if the whole nation recognized Jesus as the Messiah that Yahweh finally sent to redeem us… Now those hopes have died within us. 

Finally I cannot stand the silence any longer. “Cleopas, what can God be doing?” I ask. My voice betrays my desperation. “Surely Jesus was the Messiah… We saw how he healed people, taught with authority, revealed the scriptures to us. But now I do not understand what God intends for us to do. Our teacher… our friend. He is gone.” 

Cleopas’s first response is a long sigh. “I too wonder what Yahweh is doing. And what of the stories of the women this morning? Mary, Joanna, Mary Magdalene. What can they have meant by their words?”

A fierce urge to defend my friends rises up in me, but I too was confused when they returned this morning as we were preparing to leave. They told us of going to the tomb to prepare our friend’s body for burial. Instead, they found the tomb empty except for two men, filled with glowing light, asking them why they expected to find Jesus. These women are my friends. I know they would not make up a story. Could they have imagined it? None of us have slept much in days. Could they all have imagined the same thing though?

Cleopas and I are talking through the details of their story, when suddenly our footsteps are not the only thing I hear. I turn and see a fellow traveller catching up behind us. He is alone, without any provisions. Probably, like us, he had attended a Passover feast in Jerusalem. 

I move toward Cleopas on the path, leaving ample room for him to pass us by and continue on his way. Instead, as he catches up to us, he falls into step with us. 

“What an intense conversation you were having,” he says. “I am interrupting.”

I sort of smile to indicate that it is okay. I don’t need to have this conversation with a stranger, though. Cleopas must feel the same. He only nods his head. 

“What were you talking about?” our fellow pilgrim asks. 

I’m shocked that he has no idea. What must the whole nation be talking about by now? “Have you not been in Jerusalem as we were?” I ask, astonished. “You must be the only one who has not heard about the events there these past days.” He doesn’t reply. 

“About Jesus of Nazareth!” I explain. “He was a prophet, powerful in word and deed before God and all the people! We know he was sent by God, but the chief priests and rulers had him sentenced to death and he was crucified. We had… “ My voice breaks. “We had hoped that he was the one who would redeem Israel.” Suddenly it’s difficult for me to see through the tears in my eyes. My heart is breaking like my voice, and I cannot continue talking. 

Cleopas takes over as we move steadily down the road. “Something else happened that we do not understand. This morning, some of our friends went to take care of the teacher’s body since there was no time before Sabbath began. They went to the tomb early this morning but when they returned, they told us they had not found the body but instead saw a vision of angels!”

Our fellow traveller pauses in his walking and turns, looking first at me, then Cleopas. “Do you not remember all that the prophets have spoken?” he asks, his voice intense. “As Moses said, ‘The Lord your God will raise up for you a prophet like me from among your own brothers.’ Or do you not remember the words of the prophet Zecharaiah? ‘Rejoice greatly, O people of Zion! Shout in triumph, O people of Jerusalem. Look, your king is coming to you. He is righteous and victorious, yet he is humble, riding on a donkey.’ And the prophet Isaiah foretold…”

Mile by mile, this fellow pilgrim goes through the scriptures with us, starting with Moses and working through the prophets. My heart begins to warm again, a feeling I have not had since before the teacher died. The same feeling I used to have when he would teach. It is not much, like the first lightening of the sky before dawn. But it is noticeable, especially given the darkness of my heart these last three days. 

Baruch ata Adonai Eloheinu, Melech ha-olam… Blessed are you, Lord our God, Ruler of the universe. I think again of the words that start our Jewish prayers, words that just a few days ago were so hard to say. But this man has explained the scriptures in a way that make me see how the last few days’ events were God’s plan from long ago. A plan I do not fully understand, but a plan nonetheless.

All too soon, we crest the final hill and see our village laid out in the valley below us. Our fellow pilgrim continues in his explanation all the way to the door of our house, and then turns to walk on. “Do not go!” I blurt. 

“Indeed, do not continue your journey tonight,” Cleopas echos. “It is almost evening. Stay, break bread with us, and rest here tonight. The day is almost over.”

Cleopas and our visitor sit at the table while I gather a humble meal for us. I join them, setting down bread and then sitting down carefully, my tired body groaning in protest after the day’s long walk. 

Cleopas invites our guest to pray the blessing over our food. He lifts up the bread, breaks it, and gives thanks. “Baruch ata Adonai, Eloheinu Melech ha-olam, hamotzi lehem min ha-aretz.” Blessed are you, Lord our God, Ruler of the universe, who brings forth bread from the earth.

And suddenly I think of other hands lifting up bread. “This is my body, broken for you.” Hands lifting up bread and giving thanks, then feeding a hillside full of people. A strange energy shifts in the room. In my heart. I look from the hands holding the bread to the man’s face. I know this man. I know this man. But how can this be…. I study his face. Is it disappointment I see, that we did not recognize him? Is it annoyance that he had to explain to us again things that he had taught? 

No. It is a face shining with love. 

My body, suddenly tired no longer, jumps up from the table. And in that moment, Jesus disappears. Cleopas and I look at each other with amazement. Our teacher, our friend, the Messiah… alive! Tears fill my eyes anew, but these are tears of joy. 

“But how? How did we not know him?” I exclaim. “And yet… Cleopas, surely my heart was burning within me while he revealed the scriptures to us!”

Cleopas nods his head. “ How could we not have known our Lord? And yet, as you say, it was my heart that began to know him as he taught us.”

“But it was in the breaking of bread that my eyes knew him… just as he broke bread with us before.”

Cleopas rises from the table. “We must go tell the others!” he declares. 

“We must!” I agree. “But first…” I gesture to the bread. Cleopas and I each pick up a piece of the bread left behind at the spot where Jesus was sitting. This is my body, broken for you, I think again. We eat. Tears stream down my face. I do not understand all of this yet. But I say again, as we eat, “Baruch ata Adonai, Eloheinu Melech ha-olam…” Blessed are you, Lord our God, Ruler of the universe… 

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Humanity

Walking through crowded New York City streets among hordes of tourists, the sun beating down overhead, the only shade coming from the concrete towers rising above… it’s easy to lose sight of humanity. It would be easy to shove your way through any crowd, elbows out. To huff in annoyance or roll your eyes at drivers who pause in the crosswalk of a light and then get trapped by the very pedestrians they’re inadvertently blocking. To put in headphones and maintain a separation, an emotional distance from the people around you. It would be easy to forget that each person is a person like you, loved by family and friends, with the hum of hopes and dreams deep within. 

 

But reminders are there if you look for them. If you’re paying attention, you’ll see them. You’ll see the four-year-old boy walking with his older brother along the edge of Central Park, so excited about the horses and carriages waiting for riders that he greets each and every last horse with a delighted cry of “Hello, horsey!”

You’ll see the Cartier security guard, bored by hours of standing alone outside, sweating in his suit in the summer heat. You’ll notice how he catches the eye of the security guard inside and entertains him wordlessly while pretending to do down stairs while walking past the window. He’ll be embarrassed when he discovers you watching him, but that embarrassment will quickly change to a shared laugh when you compliment him on his skills. 

You’ll find yourself stuck inside the middle of a group of teens crammed too tightly into a subway car and laugh out loud when you over hear the dry comment, “Well, we said we wanted this mission trip to bring us closer together.” 

You’ll find yourself smiling at babies in strollers on the subway, crying at stories of immigrants on Ellis Island, sharing a smile with a stranger while pausing to enjoy the early morning sun and the mist rising off a pond in Central Park, commiserating with fellow commuters over subway delays. 

You will discover the truth of the Dalai Lama’s words, “Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.” 

 

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The Goodness of God

Sometimes it’s easy for us to proclaim that God is good, to know and experience God’s goodness, to sing words like these. But it’s not always easy. Sometimes it feels like we’re experiencing anything but the goodness of God. Sometimes it feels more like we’re in the “valley of the Shadow of Death” as David puts it, and yet we don’t feel like the good shepherd is leading us. 

Many of you know that in a few weeks, I’ll have surgery for a tumour in my adrenal gland. Waiting for the diagnosis last fall felt like one of those shadow-filled valleys for me. Labour Day weekend was when things really intensified with one final emergency room visit in a year filled with emergency room visits. That one felt like a turning point and brought me some hope for the first time in a while that there would be a diagnosis. I remember coming to church the first Sunday after that and standing up when we started to sing and praying, “God, whatever happens now, I know that with you I’m going to be okay.” And the Holy Spirit whispering to me, “What if you’re not okay? Will we be okay if you’re not okay?” 

That question was really hard for me. I thought a lot about prosperity gospel, about our desire to believe that if God loves us, it means everything in our life will be not just okay, but blessed. But we can be faithful and believe that God wants to heal us and not be healed. Not have broken relationships restored. Still suffer with mental illness. Still wait for unanswered prayer. 

AND YET God is still good. 

During those fall months, going to church was hard. I was on medication that meant I just didn’t sleep, so I felt awful a lot of the time, but sometimes I woke up feeling physically okay but just couldn’t come to church because I couldn’t handle pretending that everything was okay and I didn’t know how to talk about it not being okay. I couldn’t sing about God’s goodness when I felt like I wasn’t experiencing any of it. 

Now, looking back, I see that God wasn’t absent. God taught me so much about who he is and who I am. God taught me anew what it means to rely fully on him. I learned about the beauty of being in community. I learned to let others help me, the beauty of having others pray for me. I learned that God isn’t just good when our lives are going well, but God is good all the time. I learned that maybe the only way for us to know this truth is to experience the shadow-filled valleys that life inevitably brings us. 

I wonder if Lent is an opportunity for us as a church to learn this too. At Ash Wednesday, the start of Lent, as a cross is put on the forehead of churchgoers, the words “Remember that you are dust, and to dust you will return” are spoken over each person. Maybe we need that reminder of our utter inability to save ourselves, our inability to do anything outside of God. And God uses the hard experiences in our lives to teach us this lesson too. And Lent also gives us a picture of who God is, of what God’s self-sacrificial love looks like.

It’s Sunday today. If you were in a church today, you probably sang a couple of songs about who God is, proclaiming things like God’s goodness. Maybe those were easy for you to sing. Maybe they were incredibly hard. Maybe you feel like you’re in the shadow-filled valley now. If that’s the case, remember that God is there in the valley. He’s waiting to show you who he is.

 

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Psalm One

Afternoon church services in my childhood would start with a hymn sing, and the organist would choose and announce these songs before the pastor got up and officially began the service.  Especially exciting were the times that the organist would be confident in his ability to sight-read anything the congregation would throw at him, and would allow people to suggest hymns instead of choosing them in advance.  

In my head I would always chant to those around me, “Choose number 1!  Choose number 1!” I never would have dared to request it myself. But that first song in the hymnal held such a fascination for me.  What could song number one be about?  

One spring day, Dad had to do some fieldwork, and it was my turn to ride inside the tractor with him. As the tractor made its way through the fields, I told Dad how I wondered what song number one was and how I hoped that someone would choose it for a hymn sing.  I shared this probably hoping Dad would request it the next time it was a brave organist playing for the hymn sing.

Dad did something way better. He sang for me then and there.  

“That man is blest who, fearing God, 

from sin restrains his feet,  

who will not stand with wicked men, 

who shuns the scorners’ seat.”

 

He sang it for me until I knew the first verse from memory.  And while it was a psalm we did not sing often in church, it has remained for me a favourite one.  And Psalm One was a natural choice for me to memorize in its entirety later in life. The image of the tree, planted by streams of water, that yields its fruit in season and whose leaf does not wither – that was easy imagery for a farmer’s daughter to understand.  

What made it stick, though, was the example of my godly parents, who spent time reading God’s word, who prayed with their kids, for their kids, and on their own. Parents who talked about their faith, who sat at the dinner table long after the meal was done to answer questions that had come up in the Bible reading.  Who expressed their faith that God would use all things in our family to his glory and grace, even when we couldn’t see how that was happening.  

My parents are truly Psalm One people.

He is like a tree

planted by streams of water

that yields its fruit in its season,

and its leaf does not wither.

In all that he does, he prospers.

Psalm 1: 3

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Life with Pheochromocytoma

I have a pheochromocytoma, and it really, really sucks. I’m writing today from deep in an episode. My hands are shaking so much that it is taking some time to type the correct keys, and my brain feels extremely wired but it’s making it hard for me to keep one single train of thought going for too long. 

Today is probably my last acute episode. They tend to happen every two months or so, and I’m 27 days out from surgery. [Insert dancing and shouts of “Hallelujah!” here.] I just absolutely cannot wait to have surgery, and I know I’m going to be okay. But today isn’t okay. 

It’s actually loads and loads better than what it used to be when I’m in the acute phase. Medication is doing its job. But with some 20 times the normal level of adrenaline coursing through my body, medication can’t prevent all the symptoms. 

It took me a long time to get a diagnosis, and I haven’t been able to find a whole lot of people’s stories online. But the ones that I’ve found and read have given me a sense of solidarity, a sense of understanding I’d been looking for. So I thought maybe I’d write a bit of my own story here, and maybe someone will find it and it will give them hope. 

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Some quick basics about Pheochromocytoma for you

My story actually stretches back to about four years ago. Somewhere around there, I started having these weird moments where I would wake up feeling shaky and with a weird feeling like a pit in my stomach. I thought it was low blood sugar. I would eat, and the feeling would eventually go away. I told my doctor, and she had me do a fasting glucose test. It came back as normal, and she told me I was fine. That was the end of it. 

I kept having the feeling, though. Eventually it wouldn’t really go away after I ate. Then in June 2018, I woke up with it, went to school and taught all the way through it, came home, and threw up. And threw up. And threw up. And then in September, the same thing – only with chest pain and a sense that my heart was pounding. When you work at a school, there’s pretty much always some kid who’s going home because they’re throwing up. It’s pretty easy to blame it on a stomach bug. 

But then the same thing happened in November, and I realized this was a pretty solid pattern. I took myself to a hospital ER, where two nurses and a doctor suggested that I was having a panic attack. The doctor actually came back and apologized when he saw my lab work – my results all showed something very wrong and he told me apologetically that they wouldn’t be able to discharge me. I cried both out of relief and frustration – it was the day of parent-teacher conferences and I didn’t see how I should have to miss those… I knew that if the pattern continued, I would actually feel okay again in a couple of hours. Okay, more like most of the day. 

I ended up being transferred to another doctor who was very empathetic and who I felt really listened and asked thoughtful questions. With the vomiting, pain, and high levels of inflammation from my bloodwork, she suggested gallstones, and I was eventually given an ultrasound which confirmed that I do have a gallstone. 

I left the hospital with a sense of relief, booked an appointment with my family doctor, and discussed a referral to a surgeon. I couldn’t believe how quickly that referral happened, and I went to the surgeon with nervous excitement. He looked at my labs, asked me some questions, and very quickly told me that my problem was not gallbladder related. Back to square one. 

The next six months were a cycle of feeling totally fine until an episode, then waking up with a sense of dread when the next one started, and either deciding to go to the hospital where I would eventually be sent home with a sort of metaphorical shrug of the shoulders or deciding to just stay home and tough it out. By June, I was gathering a medical file of all of my tests, ER visits, and my own data. I was being referred to numerous specialists who would basically say, “Whatever it is, it doesn’t seem like it’s in my field…”

The summer was a lovely break, and I felt good. I completed a summer course, went to Guatemala, took my parents on a road trip, went church camping, and everything was good. I returned to school, sat through teachers meetings, set up my classroom, met parents and students at our open house, and I felt good. Then the morning after the open house, I woke up and symptoms had started again. I woke up actually thinking I had a migraine. I took an Advil and went back to bed, texting my parents that I wouldn’t be coming to see them that day. I woke up an hour later and realized what it really was. My hands were shaky. I felt like I had a pit in my stomach. I couldn’t shake the sense of dread. As the day wore on, I felt extremely wired, like I couldn’t sit still. Eventually, I felt the band of pressure tighten across my chest. It felt like my heart was beating hard, working for every beat. Soon the vomiting started, and it wouldn’t stop. I decided I wasn’t going to the ER – it didn’t feel like the ER did anything for me anyway. It was just hours of torture and waiting and vomiting, and doing it in front of other people instead of in the comfort of my own home where at least I could alternate between couch and bed and bathtub and had Netflix to sort of distract me out of my misery. 

But it was bad. It was really bad. It amazes me that this condition can take you from feeling perfectly healthy and good to I might die at any moment in a few hours. So eventually I went to the hospital, taking my folder of medical files along with me. The ER doctor was so kind, and when he started asking questions and I pulled out my files to show him answers, he wasn’t annoyed. He sat on the edge of my bed and paged through my files, occasionally asking questions. I would point him to answers in my file. He said to me, “We need to get someone smarter involved here. Whatever this is, I am out of ideas.”

Enter my new doctor, internal medicine. He came to see me in the early morning hours. He also paged through my files, asked me multiple questions, went and did some thinking and research. He came back again to talk to me around 9 in the morning. He had some ideas he wanted to follow up on, and he told me I could stay for some testing, but with it being Saturday on a holiday weekend, he said I would probably not be able to get the tests done that day. I knew my symptom pattern well and my chest pain was lessening and heart palpitations were decreasing, so I knew I would actually be able to go home and sleep. We agreed that I would come into the hospital for an appointment to see him. But before I left, he gave me a note with the word pheochromocytoma on it. 

Let me summarize the next two months: multiple hospital visits. Approximately one a week. Testing, follow up testing, different testing. By the end of September, I had the results back which indicated pheochromocytoma was very likely, also meaning I could take the right medication. By the end of October, I’d had an MRI. By the beginning of November, I had my final follow-up with the internist and was under the care of an endocrinologist, referred to surgery. Now that we knew what to test for, we could run testing while I had symptoms and very easily discover the results – the crazy amount of extra adrenaline coursing through my system. In December, I had a consult with the surgeon. At the end of January, I received a surgery date. Now here we are, 27 days away from surgery. 

Pheochromocytomas are extremely hard to diagnose. They often come with high blood pressure, sweating, and headaches, which could be attributed to any number of conditions. Panic attacks are an actual symptom of the condition. This makes me feel approximately 1% more gracious to the nurses and doctor who suggested that I was having a panic attack. But it makes me even more grateful and amazed by the doctor who suggested it to me before I had even left the ER on my last ER visit. 

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This take on a pheochromocytoma amused me. Pretty accurate for the “typical” pheo… not exactly my symptoms though.

You may be familiar with the saying, “When you hear hoofbeats, think of horses not zebras.” This aphorism was created by Theodore Woodward, a professor at the University of Maryland School of Medicine to remind medical students to choose the common explanation over the exotic one when it comes to diagnosis. In fact, neuroendocrine diseases use a zebra-patterned ribbon to represent this exact idea – that sometimes the explanation of the hoofbeats actually is the zebra. 

The incidence rate of pheochromocytomas is somewhere around 2 per 1 million people. However, many researchers think that number may be quite low since many pheochromocytomas aren’t found until autopsy. The average time from onset of symptoms to diagnosis is three years. This all just makes me even more grateful and amazed to have received a diagnosis. 

So I’m getting through this awful day by counting my blessings. 

I’m so very grateful for the diagnosis that reassures me – no more wondering if I’m going to die. 

I’m so very grateful for the medication that diagnosis provides – symptoms are present but manageable, especially compared to previous episodes. 

I’m so very grateful for universal health care. I’m not hundreds of thousands of dollars in debt. When I pondered not going to the hospital, it was never because I couldn’t afford it. 

I’m so very grateful for a doctor who not only diagnosed me, but provided the most excellent patient care while we searched for a diagnosis. 

I’m so very grateful for friends who prayed for me, who took care of me, who texted to see how I was, who gave rides to or from the hospital. 

I’m so very grateful to God for being with me through all of this, using it to teach me more about who God is and who I am. 

Posted on by bethanypasma

Dayenu

Dayenu is a Jewish song for the Passover. If tells of all the things God did for the people of Israel, saying essentially, “That alone would have been enough.” 

Thanks to one of my wonderful colleagues for introducing this at a recent staff devotions. 

Here’s my own take based on most recent events in my life. 

 

 

If God had provided me with just a diagnosis and no cure, 

It would have been enough. 

But God gave me a diagnosis AND a cure AND medication in the meantime. 

 

If God had provided a cure for my diagnosis, 

It would have been enough. 

But God blessed me with the most perfect time for surgery that only he could have arranged.

 

If God had provided for time off to recover, 

It would have been enough. 

But God provided a student teacher to help take care of my beloved students. 

 

If God alone had taken care of me during my journey, 

It would have been enough. 

But God surrounded me with a wonderful loving community who care for my mental, emotional, and physical needs. 

 

If God had prevented me from developing my condition in the first place, 

It would have been enough. 

But God used it to show me who God is, to teach me to trust more deeply, to receive the kindness and love of others, to follow God’s leading. God used it for good in the way only God could have. 

 

God could have provided just enough. 

Instead, God provided overflowing abundance and goodness.