I’d rather hear messages of hope than ticker tapes about death tolls and unnerving and misinformed quotes from people who are in a position to know better and definitely in a position to do better. Not because I am blind to what’s terrible, but because it’s almost impossible to make good things happen if you’re so often told nothing good can come from this. There is vastly more power in fighting for the good than there ever is in allowing yourself to soak up the bad.
So here is my story. And thank you in advance for even taking the time.
With the exception of FaceTime and Zoom, I haven’t really seen any of my friends or family for over eight weeks. I spend 23 hours a day or more inside my apartment. I’ve read 18 books in that time period. I’ve taken up coloring like a toddler. I’ve resumed my love affair with midday naps, which I haven’t enjoyed since undergrad. And I also haven’t worn real pants in 64 days. I miss being outside and every day I wish I could be around people.
My reality is that I will likely not have those opportunities for quite a while. Possibly months.
I am 34 years old. I work as a criminal prosecutor. In my spare time I do comedy, practice Muay Thai and love being outdoors. I usually hike year-round and love long-distance running. This last fall, I found myself feeling really rundown and thought I was just stressed out about a major criminal case I had been dealing with for the better part of the previous three years.
In my mind there was no possibility that I was sick because I work out every day and I take care of myself.
I was wrong. After multiple doctor visits and test after test, in February of this year I was diagnosed with chronic lymphocytic leukemia (CLL). It is a very common form of leukemia, apparently one of the most common in the West. Only it’s common for people in their 70s or older. And it’s markedly more common for men than for women. I am told I am in the less than 5% of women in their 30s to be diagnosed with CLL. I was shocked.
Like I said, I was healthy. I was just tired. I found out in the worst possible way. I visited a doctor on Super Bowl Sunday because my symptoms seemed to be getting worse. I brought a friend with me because I hate needles and after so many visits I just knew they would want to stick me with another one.
The doctor came in and began reading from my chart without pausing for me to clarify anything or ask questions. It was more like an “SNL” skit than a real-life interaction. Mid-sentence she casually stated, “I’m not in a position to talk to you about your lymphoma, so you’ll need to follow up with your primary care physician.”
And then she just kept reading like a fourth-grader giving a class report on the state flower of Iowa. No pause. No words of comfort. No clarification. She was wrong about the lymphoma, but I did have cancer. I think about it now and my comedic instincts tell me that it would be hilarious to watch from the outside and maybe one day I’ll be able to do it justice in that medium.
I stupidly started doing every Internet search I could on the long-term prognosis for people with CLL. It was an awful idea and I absolutely do not recommend doing that to anyone newly diagnosed.
Every site I found happily declared that people could live for up to 22 years with this diagnosis and most made it to the five-year mark. I guess that’s positive if your starting point is 70, but mine was not. Even though no one knows what amount of time they’ll get to do the things they really want to do, I knew for certain that 22 years was not enough for me.
I was angry. That’s the only way to describe it. I wasn’t calm. I wasn’t kind. I wasn’t brave. I was just angry.
It took me a few weeks and a very helpful hematologist to get a better grasp on what this meant. CLL is incurable. Notoriously so. To the point that they do not treat it until it becomes advanced enough that the symptoms are worse than the treatment itself.
My genetic tests revealed that I have a very good prognosis. The things I believed I would be stripped of were not completely out of the realm of possibility. The dream job I had been applying for that required passing of a medical background might not be gone. I saw some hope.
Weirdly, the best possible option for me is if the disease never progresses. It means I will always have leukemia. I will always have a compromised immune system. I will always be susceptible to other cancers. I will be required to get bloodwork and scans done every three months for the rest of my life and have the constant anxiety of wondering if this is the time when they tell me the bad news. That’s my best-case scenario.
I was coming to terms with that when this pandemic hit the US. I got an email from a hematologist explaining that my particular type of leukemia put me at critical risk of serious complications if I did get Covid-19. I needed to self-isolate immediately. That fear of dying I was coming to terms with came back pretty hard.
I was forced to explain to my boss and supervisor that I had leukemia and needed to be able to work from home. Unless you’ve been through it, you can’t really describe the way someone’s countenance changes while you tell them you have cancer. Not necessarily in a bad way, but it is there. It’s an odd feeling for someone who is very much used to forging through things alone. I loathed to tell anyone I was sick. They were immediately supportive and sent me home within an hour.
This pandemic meant I would have to tell more people than I ever wanted to. I had to cancel my gym memberships. That was an outlet for me that I was devastated to lose. Since the orders to stay home were issued, my suburban neighborhood and the parks nearby are now too full for me to run in. I can’t go hiking because the trailheads are packed with cars and I can’t risk it. So I am home, in my little box, 23 hours a day.
In recent weeks, I have seen so many people arguing that the economic impact of these restrictions is not worth it. I hear that and I can’t help but feel like I am simply a faceless, voiceless number to those people.
What they’re really saying, is that I — along with others who are sick and vulnerable — am not worth it. That our lives and the lives of those who care for us do not matter — that we carry less weight in the equation because we are already imperfect. I’d like those people to hear me when I say that I really truly do not want to die, but I am scared that someone else is making that decision for me.
I know that doesn’t sound like the positive story that I promised when I started this email, but it is. It absolutely is and here’s why. When I got sick I was scared and totally alone because I was unwilling to tell anyone. That’s just part of who I am. I don’t want the people around me to worry. I want to look out for them.
But I couldn’t do that in this scenario. I could be angry and cry, which admittedly I still do sometimes because this is an adjustment and I am far from perfect. But when my brother FaceTimes me from Alaska so I can play peekaboo with my 1-year-old niece, I can’t not laugh.
When my mom sends me a text message to tell me that she picked up scones and coffee from my favorite local coffee shop and left them on my porch, I can’t be angry. When the people I work with (who I had only been working with for a month before this pandemic) go out of their way to make sure I can continue working from home, I can’t be anything other than grateful. When I step out on my porch to get my mail and there’s a bottle of whisky and a roll of toilet paper waiting for me, it’s a reminder that someone who I care deeply about also cares deeply about me.
My gym started doing virtual classes and they were kind enough to deliver a punching bag to my apartment that had been sanitized. Seeing familiar faces and hearing familiar voices is more comforting than it ever was before. My family puts groceries in my car for me and I can wave to them from my third-floor window. I have an abundance of people checking up on me — something I did not realize before.
A month or so ago, I drove up the canyon near my home in a snowstorm, hoping no one would be on the trails and I could get outside. Unfortunately, the trails were packed. So I found a side road, parked my car, opened the tailgate and the moon roof, and let it snow on me for 45 minutes while listening to Sir Patrick Stewart reading sonnets on Twitter.
A few weeks ago, I was singing “Hamilton” songs to my cat and forgot my windows were open until I heard one of my neighbors reverb, “I am not throwing away MY SHOT!” I laughed a lot longer than I should have about that.
I wouldn’t have done any of that if it wasn’t for this stupid pandemic.
I am so much luckier than most. I can work from home. I can still pay my bills. I could be sicker. A lot sicker. I can only imagine how difficult this is for people who are in active cancer treatment. The isolation seems impossibly difficult to handle some days, but then I remember how grateful I will be to see people again. To kiss someone I haven’t been able to kiss in months. To hold my nieces and nephews. To dance stupidly with my gym friends.
There is some distant light at the end of this horrible tunnel. I refuse to let the rhetoric make me angry. I have enough reasons to be angry. I like the challenge of finding reasons to be happy. And the more I do that the easier it becomes. There are so many people trying to do what they can in their own way. That’s what matters most.
And every time I forget that, I remember that I haven’t had to wear real pants in 64 days.
Thank you for listening.
Stay healthy and safe,