Last week I was walking from my oncologist’s office to my car when I heard a voice calling out.
“Hey! Hey you! Hey there!”
I didn’t think he was talking to me but I was the only one there so I turned around. It was the guy manning the valet station. Once he caught my attention he waved.
“Hey there! How you doing?”
I waved back. “I’m good, thanks!”
He smiled. “Good, cause you’re looking good, too!”
(This was definitely the highlight of my day and the first time I’ve been catcalled since my stem cell transplant).
It happened again yesterday—I was walking back from the post office when a sexy salt-and-pepper put down his cell phone, smiled, and said hi to me for absolutely no reason.
It’s interesting for me because for the last few months I’ve been invisible. Don’t get me wrong—sometimes it’s nice to be invisible, to see people glance right through you as if you’re not there. Especially when you’re feeling bad, and especially when you feel you don’t exist in the material world at all, but in some strange in-between of presence and death.
When I first relapsed I’ll be honest and tell you I hoped I would die as quickly as possible. From everything I knew relapsed T-Cell ALL had a miserable prognosis. When I was first hospitalized and the on-call attending told me the plan was more chemo and a stem cell transplant, I put my head in my hands and cried and said, “I don’t think I can do it again.”
The reason I wanted to die quickly is that I’ve learned there is something worse than death, and it is fear. As I waited those first few weeks to see if the chemo was working and the tumor was shrinking (a necessary first step to having a successful transplant), I’d “test” my lungs on an hourly basis, breathing as deeply as I could to see if there was more space in my chest, shifting positions obsessively to see if the pressure on my lungs felt lighter.
I ruminated over the possibilities. If it didn’t work, how would I die? I googled “how do you die from lymphoma” but mostly got answers on how one dies from leukemia (usually a combination of bleeding and infection caused by cancer cells in the bone marrow pushing out healthy cells needed for blood clotting and fighting infection).
But I didn’t have any cancer in my bone marrow—just in my chest—so I thought it through to the most logical conclusion. The tumor would continue to grow rapidly over the following month or two until there was no space left in my chest and I went into heart failure or suffocated to death.
I frantically googled “psilocybin therapist Los Angeles” because I heard it could help cancer patients process death (unfortunately this is not the type of thing doctors advertise online). I was seized with fear, terrified every moment I gave my mind the space to think. What if what happened after death was even worse than this, worse than life?
While I waited I wrote my will and made an Advanced Directive. There was a question where you could specify what you’d want to happen to your body after you died. I never thought I’d care about such a thing—why would I? I’d be dead anyway. But when I really imagined it, I did care. I wanted to be buried in a Jewish cemetery, somewhere nearby so the people who cared about me could visit. I didn’t want to be forgotten.
But… none of that happened because the tumor shrank with chemo, and I went into remission. Then I fretted about finding a match on the bone marrow registry, but there she was—my little German angel. Then I worried she’d change her mind, or that the stem cells would get lost in transit (she donated her cells in Germany before they were couriered to Los Angeles).
I worried when I was admitted to the hospital while I got total body irradiation and high dose chemotherapy to eradicate my immune system and prepare me for transplant. I worried right up until I saw with my own eyes the bag of cells hanging off the IV pole as they were infused into my body. Now, I only had to wait and see if the cells took, or if a I developed a life-threatening infection, or if I got graft versus host disease, when the donor’s cells attack your own body, which can have serious consequences.
But… none of that happened, either. Sure, I felt like shit in the hospital, but I didn’t have any major complications and after a month I got to go home. I worried about infection but I didn’t get one. I wasn’t supposed to eat takeout but one day I was craving pizza so my mom and I ordered delivery and I ate the pizza and nothing bad happened (we did have to hide the pizza box evidence from my husband because he had an eagle eye on me to make sure I followed all the rules, which I found adorable. I’ve never seen someone use so much Purell in their life).
I walked around the block and nothing bad happened, so I did it again. I kept my eyes peeled for signs of graft versus host disease but didn’t get it. Then I had a follow-up PET CT and it showed no evidence of cancer in my body. Yes, I was (and still am) floored with fatigue, and my body aches, and I sleep 12 hours a night, but there has been no catastrophe, no transplant rejection, no relapse.
Last month I passed the 100-day mark from my transplant, a clinically-relevant and symbolic signpost that the worst is (hopefully) behind me. Of course, though, I’m still at risk for relapse and there’s still a sense of existential dread. I was chatting with a friend recently about what age we feel. I (half) joked that I feel 65, and he said he feels 30 (we’re both in our late 30s). I asked him what being 30 feels like.
“Oh, you know.” He said. “It’s that feeling when you’re settled and have your career, but you still have energy and your health and you feel like there’s a lot of time life.”
Of course it made sense but I felt a little sad when I heard it, because it made me realize I don’t feel that way at all—I haven’t felt like I have time left since I was 30, before all this started.
I’ve discovered one antidote for the existential dread, though—shopping. Mostly for face creams, because that total body irradiation did not help my skin tone. I’m getting Invisilign and I prepaid my malpractice insurance for the year. I’m writing my book. My brother and his wife just had a beautiful baby girl and they asked me to be the godmother and I was elated to say yes. I’ve already decided I’m going to teach her piano and swimming and good grammar (don’t get me started on messing up object and subject after a preposition).
I live each day as if I have all the time in the world, and that makes me happy. There is a joy in being ordinary, in having the same petty worries and pleasures of a regular person who hasn’t repeatedly had to contemplate their own death.
Maybe someday I’ll feel so ordinary that I’ll vent on Facebook about how the kitchen windows arrived three days late or how the DMV is sooo disorganized and I can’t get an appointment to get my Real ID or how the kids these days won’t get off their phones. I’m not quite there yet, though.
But hey—at least I look good!