My story is one of many chapters. None of them are unique to me: every problem that I have many, many other people have as well. At the moment, these are my thoughts on two of my own problems, as they relate to one another in unexpected and sometimes heartbreaking ways.
One week ago, both of the bars that I work at abruptly closed, just like so many others, in response to Governor Gavin Newson’s order for all bars that didn’t serve food to do so. This was my sole source of income, and I am a “grown-up”, with two mortgages I’ve been struggling to pay for so long that they originated from Washington Mutual (dating myself here!) back when you could do 80/20 financing. Needless to say, this was inconvenient and hard for me. Like so many others, I spend much time rotating between checking the humble balance of my savings account versus the overwhelming bills coming in, while also obsessively watching the news, scared and searching for any hope of how soon the measures may help slow the virus, when the overwhelmed California EDD will catch up to slow the bleeding (I say slow not stop because unemployment will not cover real bills), and how/when any emergency measures being discussed by local and national government would work for both me personally and the many friends I have in similar situations. At points this week, I’ve even wallowed in my own bad luck with the timing, as this happened at a time when my life was not easy… But more than anything, I’ve found myself GRATEFUL that I live in a state that did take this outbreak so seriously as soon as it did, and sometimes angered by the number of people simply not taking it seriously enough. I get it. A lot of us are suddenly out of work. In a crowded, expensive city that we pay high, high mortgages/rents to have the advantage of beautiful beaches and parks, we are suddenly grounded (most of us to small apartments that feel smaller every day). We’re all realizing the true ugliness of the word boredom, which at times feels worse than the sometimes-overwhelming fear it’s mixed with. But let’s be honest: being told to do your workouts in your hallway watching a video on your phone, go extra-deep on the spring cleaning this year, and sit on your couch a little extra time isn’t the worst thing that will ever happen to you. And if you refuse, you’re negatively contributing to or indirectly causing what may be the worst that thing ever does happen to others.
For me, to date, the worst thing that I’ve experienced was already ongoing before I’d ever heard the word “coronavirus” or “covid-19”. It revolves around watching a much better person than myself go through something harder than most of us will ever experience (I hope) and feeling helpless and scared. Words many of us can relate to right now, yes? And ironically, as I’ve been watching this pandemic play out in real time, there’s actually a lot of parallels. I’ve joked with him that we unintentionally panic-bought more food than we needed months before it was the “cool” thing to do, when we were worrying about him having enough food in the house while I was at work and he was home sick in the days after chemo, or that, even longer ago, that when his stomach was all messed up from the maximum dosage of Norco, our toilets taught us what now our city sewer system is learning all at once about the false advertising on those “flushable” wet wipes. And all those questions on search engines, about what the disease is, how it’s contracted, what it does to your body, how likely you are to recover, what the treatments are, what the side effects of said treatment are (I could go on….)– it PALES in comparison to the sleepless nights I searched all the same on parotid cancers, adenocarcinomas, and HER2 receptivity.
No, I’m not trying to one-up anyone. I’m not trying to say who cares about coronavirus; cancer is worse. I’m not in any way diminishing the pain that thousands of families across the country and the world are experiencing, and I’m not trying to cry poor me. Any sickness, any pain, especially any death, should never be downplayed. We all have our own battles, and no one’s is worse or more important than the next. In fact, largely, they’re all connected. And my question is simply this: if we were all more open, more honest, more vulnerable about our pain and our battles, could we learn to maybe care just a little more about “other people problems” and work together, compassionately and selflessly? I don’t know the answer. I don’t know if anyone cares. Hell, I don’t know if I were to honestly put myself out there like this, if anyone would still be reading my rant. And I certainly don’t know if it would stop any of the people who are still trying to socialize from… You know, socializing.
The details and history of my fiance’s diagnosis I’ll try to simplify. He’s a good man—generally quiet, sweet, and mild-mannered. A little shy, he’d almost always choose nature and wildlife over crowds and people, but still he dedicates his life to people, walking the line in one of those first-responding jobs we all claim to be so thankful for in these trying times, for the last twelve years. Until a little rash caused us to have concern enough to see a doctor, which led to another, then a trail of specialists, each more scary than the last. In two months’ time, the conversation changed from talking about a strange skin irritation to calling it a tumor, then to the dreaded C-word and a surgical date, and still further to what it turns out is a much scarier and more dread-worthy M-word (metastasis)-which comes along with words like “inoperable”. The conversation changed from “is there a topical ointment that can clear this up?” to choices about whether he would prefer radiation to lessen the constant pain or chemo to slightly prolong his life, buy him a little time to “get his affairs in order” while ultimately making the little time he had left likely even more miserable. That conversation took place on his 48th birthday, just two days after the inoperable conversation happened on Christmas Eve. Needless to say, the Christmas in between and the birthday weren’t our best holidays. I sat staring at the risk factors. He’s not a drinker, maybe 1-2 drinks per week on a big week. He’s never smoked a cigarette in his life. It just didn’t make sense. It just didn’t seem FAIR. Ever stronger than I will ever be, he tried to comfort me. To tell me he would be ok, not to listen, he’s a fighter, etc. You know, while occasionally tossing in a question or two about my preferences on details of will or funeral-planning so he could just iron those out with his attorney. January was surreal. Sometimes it was just numb, managing to go through the motions, never in the moment. Sometimes we got to just still be us, to enjoy each other and tease and joke and laugh so hard it brought tears. Sometimes those moments were bittersweet, as the feeling that I would lose THAT soon turned the tears to real. I think I cried at some point every day for a few weeks. But we also changed for the better. The couple that used to always need to “go”–out to eat, or to the beach, or the desert, etc etc, just GO—found a new joy in a simple game of Exploding Kittens. Or a movie on the couch just quiet and comfortable and snuggling. As the hours became more precious, I left my 70+ hour/week job and went back to tending bar. No longer gone from the house 15-16 hours five days a week, we had fun with things as simple as cooking a meal. Occasionally together, or more often, me cooking, and him on our second couch that we’d pulled into the tiny dining room of our condo in place of a table and chairs, calling it his new live cooking show. Even a simple walk or drive was something we were simply thankful to have the time together to do. EVERYTHING was higher or lower than it had previously ever been. It was like my new reality was bipolar. One big succession of higher highs and many, many more tear-filled lows.
Then, finally, after nearly a month of still nothing starting, just waiting on tests and results, and feeling like the short clock he had was ticking away with no help, no healing, no attempts at all to save his life, came a glimmer of hope. The tests came back showing his cancer to be HER2 positive, making him eligible for immunotherapy drugs better researched and known for breast cancers. His oncologist tried to not give us false hope, tried to make sure we understood the chances of his living a year were still low, and based on his pain level, still suggested he perhaps opt for radiation instead. But it didn’t matter; one facial expression had told us everything we needed to know—when he told us the results of the receptor test and explained how immunotherapy worked, it was the first time we had ever seen that man smile. He believed, for the first time since we met him, that this gave us a chance. As much pain as he was in, with a 6 cm tumor- triple the size of when we first saw it on a CT scan just a month earlier—blocking the blood flow to the entire right side of his face, deafening his right ear, swelling his neck and shoulder to an immobile level, and with six more tumors growing on his spine and lungs, my ever-fighting fiance’s response was, without hesitation, fuck radiation-fuck easing the pain. I want the tiny chance. Please, I’ll take the pain. Help me fight.
So began the battle. Whirlwind fast, just three days later began chemo and immunotherapy in conjunction. While only one day of every twenty-one is a 5-7 hour IV drug day, in that same three-week cycle, there’s 9-10 other days that he has to go to the hospital, for an infusion or appointment or scan. So, for a little over two months now, we’ve gone to the same hospital almost exactly 50% of the days. In between, his days are hard. The pain from the tumors eased quickly. The side effects of chemo simply don’t. But he’s remained positive. He forces himself to eat when he has no appetite, no food tastes good, and usually it will not stay down. He’s broken none of the chemo rules—no red meat unless it’s well done, no sushi, no seared seafood, no alcohol, no direct sunlight. He’s followed all the chemo do’s– every prescription drug that helps it work, lots of water, reading the bloodwork, finding the deficiencies within, researching how diet can help those deficiencies and adjusting diet as said. For months now, he’s been putting in the work while his body was too tired to do so. And somehow, it’s started to work. After three cycles of torture, that largest tumor has gone down to 5.9 cm. Doesn’t sound like much, from 6.1 to 5.9, but keep in mind, it was tripling in size monthly. At that rate, without treatment it would be 54 cm by now. If I speak truthfully even with myself, I understand it would have never reached 54 cm. It would have killed him long before.
Amidst this new glimmer of hope comes new challenges, new fears. As a new virus tears through our healthcare system, his treatment has not changed. The result is that, highly compromised immune system or not, he still has to go to the hospital for bloodwork, an IV, or an infusion eight days in a row (before a 13 day break). This is actually less—he no longer goes there to see his oncologist; that has been transferred to be done over the phone. The CT scans to measure and check progress won’t happen for a while. Anything non-essential is cancelled at hospitals.
On a personal level, non-essential means me: since I don’t personally require urgent, life-changing, essential care, I am not allowed into the hospital. (There are multi-levels of security just to get in the front door.) A hand to hold during chemo is not essential. It just is what it is. Learning that was a rough one for me. Harder than the financial implication of losing both jobs and the fear of how soon we’ll worry about a roof over our heads, in a time that he clearly needs one. Harder than the pent-up boredom of being grounded as a productive adult. Harder than any other consequence I’ve felt from this necessary anti-socialization. After dropping him off for the chemo I couldn’t attend, I sat in the truck, crying over the fact that it’s simply hard. I heard my grandmother and mother, both telling me the same line over and over as a child, when I would complain that something wasn’t fair — “life’s not fair, and you’ll never be queen”…. And I realized that I know, as much as I hate it, it’s the right thing to do. For the week following, I sat in the truck. I watched as he walked past the tent outside the hospital, where anyone symptomatic is sent for testing. I watched as he went through the first level of security, showing proof he had a reason to enter the hospital. I watched knowing, at this security check and the first symptom check, my immuno-compromised darling was standing less than six feet from the same people every other person that tries to enter the hospital is, including the ones that get sent to the symptomatic-person tent. As the hospital gets more crowded, as I see more activity in and out of the tent, more gurneys rolling people OUT of the hospital and INTO ambulances (I can only assume to some sort of quarantine… Otherwise it’s supposed to go the other way….) I’m more scared each day of the risk of entering the hospital. The risk of simply needing healthcare.
As I said earlier, my problems are not unique. I am one of many, many people facing one of many, many similar problems. To the many Americans saying we need to get to work, our economy is important, or a depression will kill people, I would BEG them to truly read this, truly think about the larger effects. I do NOT live in one of the hardest-hit cities. And this is still very early in this crisis. It will get much, much worse. But at least, if we dig deep and care about our impact on others, we each have the ability to do our own part to choose how much worse we make it. And if we all choose to be selfless, to care about something bigger than ourselves, to just TRY to do what we can… Maybe we’ll lose less lives. Both to Covid-19 and to the many other people who need safe, regular access to their healthcare—for an ongoing condition, or should they have an unforeseen emergency. Today would be a lousy day to need to be rushed from a car accident to the ER via ambulance. I fear next week (when we start going back to the near-scifi-movie scene that is now our hospital on a daily basis) will be worse. But to the many people I know, struggling with the same economic reality I’ve been thrown into and too overtaken by that to look outside themselves, I would ask this: if we all truly put THE MOST VULNERABLE person we care about first in every decision we made, could we make it better… Faster?
For me, personally, I just hope we, as a society, figure it out before the callous insensitivity of “everyone dies someday; I’m healthy and I gotta make that money” takes away the someone I can’t imagine my life without. And I know there’s millions of people who feel the same. Because my problems are not unique.
This blog post was contributed anonymously. It is part of a series attempting to share the many different stories of individuals as they experience the pandemic. If you or someone you know have a story you would like to share (anonymously or not), please feel free to send me a message or comment here.