One Year

Exactly one year ago today, I underwent surgery to remove my adrenal gland – and, more importantly, the tumour that had grown within that adrenal gland. 

I’ve written about life with pheochromocytoma, my struggle to be diagnosed, and how life changed afterwards. If you’ve been around for long enough, you certainly know most of this story. But please indulge me again, because this is easily one of the most significant events in my life within the last decade. 

I wonder how much we can appreciate our health until it’s gone. I think it might be one of the easiest things to take for granted unless and/or until it disappears. I might be a very strange case, because I didn’t realize that my health was gone until it was restored to me. That sounds crazy, I know. But it’s only in retrospect that I can see the long slow descent into poor health that took over a decade. I didn’t know it was happening at the time. 

By the time that I was going to the hospital emergency department, I obviously knew something was wrong. By that time, I was convinced I might actually be dying. But even then, I described myself as okay in between my crisis episodes. I just didn’t know that I wasn’t okay. 

I didn’t know. I didn’t know how much health was lost and what needed to be restored. I couldn’t remember. But God knew. God remembered. And God restored. 

One year ago, I underwent surgery to remove my adrenal gland and, more importantly, the tumour that had grown there that was producing extra adrenaline – sometimes 20 times the adrenaline my body should have had. I knew that I would feel better after surgery, but I just figured I wouldn’t suffer those awful life-crushing crises any more. I didn’t know what God had in store for me. 

Let me give just one example.

I used to wake up with a headache almost every day. A person just can’t actually take Advil every day of their life, no matter how much they may want to, so I would wait and see if this was the type of headache that would go away, the type of headache I could ignore, or the type where I really did need to take some Advil to make it through the day. Somewhere between 3 to 7 times a month, the headache would develop into a migraine. I am so thankful that I didn’t have some of the worst migraine issues – I rarely had photosensitivity or problems with noise. (When you often end up sucking it up and continuing to teach through the migraine, that’s really, really fortuitous.) But I did often have awful nausea accompanying the migraine, getting worse as the day went on to the point that I would just try to lie absolutely still in my bed so that I would just have the migraine headache to deal with. Migraines run in the family, so this was just an unfortunate genetic inheritance, it seemed. 

As the weeks after surgery went by and I kept feeling better and better, I stopped waking up with headaches. I was thankful not to have any migraines, but I wasn’t really holding out any hope that they were gone for good. I expected them to be a part of my life forever. But time kept passing and I just never got a headache, let alone a migraine. Over the summer, I flew to Alberta and stayed with my sister, taking care of my nephews. When the older one started school in September and came back with a cold, one morning I woke up with a bit of a sore throat and a headache. Just a headache, nothing more. But I was pretty miserable, wondering how did I do this almost every day for so long? 

The real benchmark for me was a week of lost sleep before coming to Guatemala. With variants of concern identified in Canada, I often lay awake in bed for hours, wondering if I would really actually be able to fly out of Canada and enter Guatemala. I never had the slightest bit of a headache. Previously, lack of sleep had been my number one migraine trigger. While getting a good night’s sleep wasn’t enough to prevent a migraine, not getting enough sleep pretty much guaranteed that I would pay with a migraine. We arrived in Guatemala close to midnight, and with the time going through customs and immigration, driving from the airport, and getting settled in at a new place, I fell asleep well after 2 am. With the time change, bright sunlight shining in, loud motos driving by outside, and dogs barking in the street, I woke up at 5. While I felt absolutely exhausted, I had no headache. No migraine. Nothing. I could only marvel at the goodness of God in the timing of this healing. 

It’s not just the goodness of not worrying about a tumour or about the next crisis. It’s the day to day goodness of good health. It’s the gift of being in a new country and a new job and new community and feeling good, every single day. 

I do not take this for granted. I literally thank God for my health each day. 

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!!!