Cancer, take three.

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It’s been a month since I found out that my brother’s cancer relapsed for the second time. This now marks nine years of cancer haunting our lives. That’s nearly half of my life and the majority of my brother’s life.

I’ve considered writing about it on here for a long time, but I just couldn’t put my thoughts into words. So I decided to simply push it away. But after what became a sudden, intense emotional breakdown at 2am last night, I decided that I had to somehow return to what has always been a form of therapeutic, cathartic release for me: writing about it publicly.

When I first started this blog at the age of thirteen, cancer was one of the first handful of topics I wanted to write about. At the time, it was a fairly simple, easily wrapped-up story: my brother was diagnosed with leukemia in his first week of kindergarten, it got worse over the coming months to the point where he needed a bone marrow transplant, and I was his donor. The procedure happened two days before Christmas, he eventually got better after many post-transplant roadblocks, and cancer advocacy became a piece of my family’s life.

Five years later, when my brother’s cancer came back, I wrote a blog post the day that I found out. It was short. It was raw. It was everything that an almost-seventeen-year-old me needed to scream out into the world. And then by this January, I was able to write about meeting my brother’s marrow donor in Berlin while I was traveling before my two terms studying abroad at Oxford. This time around, about four years later, I’ve replaced screaming on my blog with screaming in real life. The day I found out, I spent the entire day loudly weeping. The walls in my house are incredibly thin, so the sounds of me crying hysterically carried from floor to floor in the house. For the first time in a long time, I had been bracing myself for death. At the time, it seemed hopeless—I was told that my brother was probably going to die within the year, and there was likely nothing that could be done. I spent the entire night in grief. I didn’t want to be alive anymore. I didn’t want to literally die, but I did feel like I was already dead.

***

The day after, my pastoral tutor told me that it sounded as if I had died many times over, that death seemed cyclical to me. For the last nine years of my life, I feel as though I’ve been brutally murdered and then resurrected, only to be killed yet again. None of this feels like it has come out of nowhere; for the week before, I was constantly on the verge of a nervous breakdown with absolutely no idea why. I had been having such horrific nightmares that I couldn’t sleep. I looked so exhausted and weary that other people began telling me that they were worried about me. I even considered going back on antidepressants after months of not needing them. And then I got the news, and it suddenly felt like it all made sense.

It’s been a month since I stopped believing in God. It’s been a whole month and I haven’t been able to find meaning in any of this. If you go back and read any of my previous posts, my outlook has always been, at its core, a spiritual one of hope, one that finds meaning in everything. Today marks yet another day I can’t find that. Even upon re-reading the previous posts about cancer that I made, I find it so difficult to reconcile the cruelty of chance—in particular, that my brother’s first relapse four years ago would come at the conclusion of a local radio special about my brother that ended with a segment on his life post-cancer—with any sort of grander meaning in the world.

It’s been a month since I’ve craved escape and have done everything I possibly can to do that. I disappeared for a few days to northern France, to Spain, to other parts of England. I considered hopping on a train and taking it as far away as it would take me. For a moment, I had considered not going back to London from France, and instead trying to get a train to Berlin, and that I would call my brother’s second marrow donor, tell her I desperately needed to be away and that I just needed a day to cry—but in Germany instead of in England. Then I decided against it.

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In the twenty-four hours after my brother’s relapse, all of us were forced to deal with incredibly difficult decisions. There were two options presented to us: we could look for a possible experimental trial or we could try to extend his life for about a year and try to give him a year doing and seeing all that he wanted. Hours after finding this out, some of my Oxford friends had come over with ice cream and snacks to comfort me, and I told them privately that I didn’t know whether I could ever continue on—I didn’t have the energy to exhaust every last option but watch my brother in pain in a hospital room, and I didn’t have the emotional capacity to consider a life where I suddenly no longer had my brother. The deliberations didn’t have to be resolved then; we found out a more conventional treatment option might be available, and on June 10 we will find out whether or not he’s a candidate for it.

Just a week ago, I woke up to a blog post my mom had written entitled, “If I knew what I know now.” It centers around the question that my brother asked my mom while he was getting his chemo: “Mom, would you have had me if you knew I was going to have cancer?” Her answer was a resigned and difficult no. There was a certain level of guilt that came with it—after all, how couldn’t there be? And that to me has been just another piece of what has been so hard about this entire experience: the guilt.

I want to live a normal life. I want to be happy. And I hate that I’m filled with so much guilt throughout this whole time—for having been away from my family for this whole experience, for wanting to escape, for actually being able to escape while the rest of my family can’t, for everything.

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Being the brother of a cancer patient has always come with its own unique set of challenges. Siblings are often forgotten in the experience, and it can leave long-lasting emotional scars. In my case, I think it wouldn’t be all that shocking for anyone to know that going through these experiences—first at twelve, then at seventeen, and now again at almost twenty-one—has certainly left indelible, traumatic marks on who I am. Years and years of therapy have tried to help me undo some of the most negative pieces of it: an abandonment complex, clinical depression, and anxiety. And now, just as some of those things were beginning to be worked through, it’s incredibly scary to have the wound reopened for yet another time.

I had thought that I could hold out and be strong, that maybe a few added years of life experiences and emotional maturity would make everything less painful than the previous times. But each distinctive cancer experience has taken from me in ways that I know I will never get back, and I can already feel the ways in which this journey has started to take from me.

I remember how, in my freshman year of Stanford, I had switched into a class called “The Cancer Problem” to fill a general education requirement. I had thought that a few years of distance and a certain level of stability within my family would make it easier to get through the class. But what actually happened was that I found myself emotional and hot-headed each time I got into the class, often choking back tears while arguing with my classmates, who were unaware of my family situation. Each class felt like navigating a battlefield, and half the battle was trying to not let on that I was suffering the whole time.

If anger characterized my processing for last time, grief seems to characterize my current experience this time. It’s been difficult to sleep or to fully enjoy my experiences, and quite frequently I found myself hit with random waves of hopelessness and the desire to just burst into tears. So instead, I’ve tried to keep myself as distracted as possible, running myself into the ground because then I’d be too exhausted to think much more about this. Someone once told me that Freud apparently had a list of different ways to handle grief—from avoidance to diving in head first, from deliberately changing your mental state through substances to intellectualizing the experience to give distance, from choosing to exist within an altered reality to pouring yourself into the world as it exists now. It seems that I’ve picked various forms of avoidance as a way to lessen the grief.

But that calculation seems to have been an incorrect one. Instead, it seems that, when I do feel the weight of it all, it feels like I’m being by a truck, compounding with all the other stresses of handling racism, homophobia, anxiety, academic stresses, interpersonal problems, and just general fears that come with being in your early twenties. And now the weight of cancer yet again finds its way back.

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I wish that I had a better way to end this post. I wish that I could end on a much cheerier note, that I would somehow be able to inspire the people who read this to go and do something or say something or change the way think about something. But I can’t. Instead, I return to what I wrote on April 9, 2015, the day my brother relapsed the first time:

“I don’t know how I’ll get through this” has been my anthem today. And as I write this, I still have absolutely no idea how I’ll be able to cope.

Today, I feel the same way as I did four years ago. But somehow, I did get through it last time. And I got through it the time before that. I’ll get through it this time because I always do. The bigger question is just which piece of me I’ll lose in the process.

It’s cancer. Again.

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This is my brother, Jude. He’s ten years old. And in December 2010, he had a bone marrow transplant that saved his life.

Today, I found out that his cancer has returned.

I’m just completely and utterly shocked, and never in a million years would I have expected this. I still secretly don’t believe this is happening, and I really think this could be just a really bad dream or an elaborate April Fool’s joke everyone is in on except for me. But the waves of guilt and anxiety and fear and anger have been crashing down on me, and no matter who I tell or how many times I tell people, I just can’t get these feelings to go away.

“It’s not your fault,” I was told by every single person I talked to today. “It’s not your fault.” It’s not your fault. It’s not your fault. It’s not your fault. The words sear into my head with the intensity and pain of a hot branding iron.

With each repetition of this phrase, I don’t feel any better. It’s not your fault. It’s not your fault that Jude relapsed. It’s not your fault that your bone marrow didn’t work. And it’s not your fault that he’s going through this again. My mind becomes numb as I hear this phrase repeated over and over and over and over. It’s not your fault. It’s not your fault. It’s not your fault.

But no matter how many times people tell me it’s not my fault, that I shouldn’t feel guilty for my brother getting cancer a second time, the feelings of guilt don’t go away. I feel guilty for every time he came in my room and asked me if I wanted to do something. I feel guilty for every time he asked if I wanted to watch a movie with him. And I feel guilty for every time he asked me if I would watch him play video games. If I could go back in time, I would’ve stopped whatever I was doing to just be with him, before he was in pain, before it became too difficult for him to smile.

KERA, Dallas’ NPR affiliate, did a feature on my brother’s cancer story and recovery that ended just last week about how we’ve moved on from the cancer experience and what we’ve taken with us. When I was asked whether or not I worry about Jude’s health, I answered with a resounding “No.” I don’t worry because Jude’s health will be fine. Yet, I was proven wrong in the worst way possible. The “He’s been cured” line I told everyone back then is now a lie.

“I don’t know how I’ll get through this” has been my anthem today. And as I write this, I still have absolutely no idea how I’ll be able to cope. All I want is a sense of normality. “Normal” is the result I’m searching for but one I know is impossible to achieve. Because “normal” means my parents come home, my brother goes back to playing on the laptop at his desk, I go back to worrying about my physics class, and my brother doesn’t have cancer again.

When I was told that Jude’s leukemia returned, a few thoughts rushed into my mind. How will I ever get through this again? It was a fairly typical response, a textbook reaction of someone in my situation. But what surprises me is what my next immediate thoughts were. Will I have to email my teachers and ask for extensions on tests and homework? What does this mean for my extracurriculars? Am I still allowed to be as involved at my school as I currently am? Has everything I’ve been working towards for the last three years just been thrown out the window for something that’s “not my fault”? It feels incredibly selfish to wonder about what happens to me first, and maybe it’s not what everyone expects—or wants—me to worry about, but that’s all I can think of. And I just can’t even fathom how much longer my brother will be a cancer patient, what that will mean, and whether we’ll both make it out of this mess.

At this point, what I really want is to clear to me, and there are only a few things that I really want right now. I really want a strawberry-banana smoothie that’s thick, but still thin enough I can drink it through a straw. I really want to go to the library and check out a book on sociology that I’ve kept on hold for the past few days. I really want to reach a conclusion on whether or not I’m taking psychology next year and which class I’d have to give up to take it. And I really want to wake up.

Cancer, Hope, and Miracles: One Moment Changed Everything

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This is my brother Jude, and it’s a miracle he’s here today.

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My brother, Jude, was a sickly child, constantly being taken out of school for medical reasons — what we believed was asthma. Jude going to kindergarten was such a huge moment — the two of us would be at the same school, he’d actually be going to school, and I’d be able to see him there every day.

Seventh grade was the first year I tried to stay extremely optimistic for the future. I started writing in a journal I bought, making sure to include even the mundane details of the first days of school. As I was rereading it, something caught my eye — Jude had a stomachache one morning, and we were almost late to school.

It was August 19, 2010, Jude’s fourth day of kindergarten and my fourth day of seventh grade. He cried for so long that day about losing a game in his gym class. He screamed about how they cheated him and how unfair the game was, as we told him that “it was just a game” and that it wasn’t worth crying over.

His cheeks were bright red, which I thought was my mom’s lipstick. Later that night, we found out he had a 105 degree fever, and we brought him to the emergency room. I’ll never forget the flashing lights of the ambulance that whisked my only brother away from the emergency room to the large hospital, Children’s Medical Center, in downtown Dallas.

The next morning, my friend A-’s dad brought me to the hospital to see Jude. I kept my sunglasses on for the ride home, trying to hide the tears.

When I made it home, I started packing up my things to take with me back to my friend’s house. My journal was exactly where I left it. I opened it, turned it to the next blank page, and wrote three words.

“Jude has leukemia.” Continue reading