Add Oil!

If we are connected on Facebook, you may have read an earlier version of this post back in February, before Plucky Day came to be. Entering a new phase in Michael’s treatment last week made us revisit the idea of desiring certainty. It felt appropriate to share in this space as well, with an update on a fellow patient.

We humans crave certainty.

We want assurance that if we commit to doing steps one, two, and three, we will indeed end up with an outcome that is not only expected, but favorable. We joke about the frustrating instructions for IKEA products, but honestly if you go slow, look at the drawings and do exactly what is being asked (and maybe turn to YouTube for tips) you’ll end up with something approximating a bed or a bookshelf or a dining room table like you purchased. We’re told if we want to lose a few pounds, we need to eat less and move more, every single day for awhile. If we want a university degree, we need to sign up and pay for classes, show up, study, take the tests, and repeat for a few years. The basic formula: if you do 𝘵𝘩𝘪𝘴 thing long enough, 𝘵𝘩𝘢𝘵 thing is assured. ⁣
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When we began this journey of Acute Leukemia, there was so much we didn’t know. For instance, before they started chemotherapy, they tested Michael’s brain, lungs, kidneys, liver, and heart. Having had friends and family members with cancers that start in one place and end up somewhere else (like breast cancer that moves to the bones, skin cancer that moves to the lymph system), I assumed the reason they were doing these tests was to see if the cancer had “spread.” But Leukemia is in the bone marrow, the blood cells. It is already everywhere in the body. They weren’t testing to see if the cancer had spread. The tests were to see if Michael’s organs could tolerate the brutal beating of toxic chemicals they planned to pump into his body to kill off the cells trying to kill him. ⁣
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They’d already bluntly informed us that without treatment, the unique blend of cancer and gene mutation in Michael’s body gave him a life expectancy of just one to three months. What they did not tell us was that for some people, if their brain, lungs, kidneys, liver, and heart don’t start from a healthy place, chemotherapy may not be an option. The available option then becomes getting your affairs in order and making the most of each day. When they congratulated Michael on being a candidate for chemotherapy, the floor beneath my feet jolted so hard. I didn’t realize there was a possibility they could decline to treat him. ⁣
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That realization continued to hit hard, especially when we, like everyone else who knows us, wondered how in the world Michael “got” this cancer. We don’t have a car — our primary mode of transportation is our feet. It’s rarely a challenge to hit 10,000 daily steps. Sedentary we are not. Michael spent the last several years working with a trainer to increase his endurance and build up muscle. If you google “anti-cancer diet,” the top hits will give you an accurate portrait of how we eat: a predominantly plant-based diet that includes a variety of fresh vegetables, fruits, and whole grains. We use sunscreen, don’t smoke, drink to excess, or consume tons of sugar. Recent executive physicals provided through Michael’s work showed awesome cholesterol levels, heart health, bone density… the very picture of decent health. Always room for improvement of course, but overall we’ve spent the last nearly fifteen years in Asia being very proactive about getting screenings and reducing the risk factors which might shorten our lives, especially knowing there is a family history of various cancers in Michael’s family. We were chasing the certainty that simply mitigating our risks would be enough to keep all of this away.
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But guess what? There are almost no risk factors for Acute Leukemia in adults. Exposure to high levels of radiation, such as with previous cancer treatment or proximity to an atomic bomb explosion or nuclear reactor is one. High, prolonged exposure to certain chemicals is another. Otherwise, it’s almost completely unpredictable, with diet and exercise playing no discernible part in who is more at risk. Of course, all those things we’ve been doing to mitigate risks are the very things which made Michael a candidate for chemotherapy, so none of it was wasted. But as a human who craves certainty, this was a shock to the system. ⁣
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Unfortunately, sometimes the IKEA instructions are missing a page, or the package is missing a part. Sometimes we eat less and move more and we gain weight instead of losing it because we didn’t know we have a thyroid issue. And sometimes we get accepted to a university and there is unrest in a city and then a global pandemic hits and that university decides to close their doors and withdraw permanently and you have to make different choices (talking about you, SCAD in Hong Kong). As much as we crave it and work toward it, we don’t get to have much actual certainty in this world. Doing the right things in the right order is no guarantee of expected outcome in every instance. ⁣

The Hematology Ward at Princess Margaret Hospital is a bubble of seclusion from the rest of the hospital. The longer you’re there, the more you notice patterns. You know which bed the newest patient is placed in, and you recognize the fear and shock on their face and the face of their family members. You recognize the same patients being admitted and discharged as they start and finish rounds of chemo. You nod to the same visitors in the stairwell, coming and going just like yourself. Things you never thought you could get used to you don’t even notice anymore. ⁣
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I myself have tried to shield my tender heart in this season by not focusing on other people there in the limited hours I get to spend in Block E on the second floor. Grim despondency and pain leak from every corner, I have zero immunity from absorbing it. My only protection is to keep my eyes and heart and energy focused on Michael, my beloved husband, instead of the many other equally precious humans also going through this awful trial. My natural instinct is to run toward those in pain, to comfort or just sit with others in distress without looking away from the heartache. But for this time and space we find ourselves, it’s actually necessary for me to not look in the first place. ⁣
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There isn’t a ton of privacy on the ward, curtains aren’t always pulled between beds and even bathroom doors are left unlocked and often ajar for patient safety. So I keep my eyes on Michael when I’m with him, and then focused on the floor while coming and going as a way to give his fellow residents privacy and dignity. But that doesn’t mean I’m completely blind or deaf, nor am I always successful in my efforts.⁣
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We have seen Michael’s first roommate multiple times, in the outpatient Day Ward when Michael has come back for blood testing, and in other rooms on subsequent hospitalizations. Like myself, his wife is there at every single visiting hour, bringing food and good cheer to her beloved, who is much further ahead of Michael in this process. While the couple speak almost no English, the wife has never failed to greet us with a wave, an offer to share her homemade food, and the distinctly Hong Kong message of encouragement: ga yau. Or in English, add oil. It roughly means keep going, you can do it, don’t give up.

In my mind, I figured they were just like us, committed to doing step one, two, and three, which will result in an outcome that is not only expected, but favorable. They may be a lap or two ahead of us, but where they are going is where we are going as well, so we keep going, we can do it, we don’t give up. ⁣
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On a February visit to the Day Ward for a blood test, the couple was there as well, but not in their commonly upbeat mood. Flustered, the wife used Google translate to tell Michael that the husband’s recent test results were not good. Instead of cancer cells dying off, they were growing. The treatment was not working. Michael texted me this news while I was at a mall with his sister Heidi, who was visiting from America. We were casually wasting time before heading back to the hospital to collect him when the tests were complete. Heidi came out of the Hello Kitty store to find me choking up at the news. ⁣
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We returned to the hospital where Heidi sat with Michael while I went down to the unusually packed basement pharmacy to wait on Michael’s bucket of drugs. I leaned against a bare slice of wall in the crowd and played on my phone. A firm grip on my shoulder startled me, and I found myself being quickly pushed toward a recently vacated seat. I was surprised to find it was the wife putting me in her chair, next to her husband, who was also waiting for medication. Again using Google translate, she asked if Michael had shared the news. All I could say was I’m so sorry, and then add oil. She smiled and told me she needed to leave, to pick up their daughter at school. I’d never seen a daughter visiting him, which means she is under twelve. I held it together until the husband’s pharmacy number was finally called, and then I cried into my hands, heartbroken at just the tiniest glimpse into another life where there is no certainty of an expected, favorable outcome despite doing everything you are supposed to do. ⁣
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I have a note app on my phone where I’m jotting small, not fully formed thoughts about this journey. On New Year’s Day we’d learned for certain that not only did Michael have Mixed Phenotype Acute Leukemia (MPAL), he also had the mutated chromosome which was reproducing the cancers cells out of control (Philadelphia Chromosome). We had prayed so hard, so specifically, with such bold confidence, for that test to be negative. Receiving that news left us breathless and stunned. That day in my note app I wrote, “Feels like we can’t catch a break but we only need to catch just one: for Michael to live into old age by my side, happy and healthy and well. We will go through all of this and much more to make that happen.” And so we have. We are going through this, and so much more. ⁣

A few weeks ago we learned Michael’s former hospital roommate is much further ahead of us in the treatment process than we first understood. He’s already completed multiple rounds of chemotherapy. He’s had radiation. He’s had two bone marrow transplants and both have failed. When the wife told us back in February that the cancer cells were growing again, what it meant was they’ve already exhausted the treatments available to him. When we finally understood the magnitude of what they are facing, the ground jolted beneath my feet once again. Their exhortation to add oil is no shallow, trite saying. It comes roaring courageously from someone in the trenches who still firmly believes that no matter how perilous the journey, it is still worthwhile to keep going, to not give up.
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I have a piece of art hanging by our door which says Add Oil! It features the outline of Lion Rock, a famous landmark resembling a regal lion overlooking Hong Kong. I bought it years ago from a local fiber artist as a small reminder of how much I love our adopted home. Now it’s a larger reminder to keep going, to push through the fear in this wild, dangerous frontier of uncertainty. To still believe in the ultimate favorable outcome, where Michael lives into old age by my side, happy and healthy and well.

Now when I hear or see the words add oil, I repeat them as a prayer — for my tender heart, for my beloved, for my family, for the couple and their young daughter making the most of each day they have together, for the other blood cancer patients at Princess Margaret Hospital and their stunned, tired families, for doctors and researchers and scientists, for Hong Kong, for America, for the world, and for you… the one reading this going through your own private stuff we don’t know about and thinking to yourself, “Well at least I don’t have cancer.” Maybe you don’t, but struggle is struggle and common to all of us. I hope you keep going and don’t give up. You can be certain I’m rooting for you. I’m rooting for all of us.

Ga yau, Friends. Add oil. ⁣