On birthdays, kidney cancer, celebration and sadness.

Today marks a big day.

It snuck up like any other Sunday, in the whir and hum and blur of daily life. Chores to be done, dishes to be washed, dinners to be made, people to be cared for. Deadlines always pending, appointments, Infusions, specialists, the pandemic curveball of the week.

It is easy to get lost in the whir and buzz of the ordinary and lose your own triumphs in the crush of caring for others, of an uncertain world, and just getting through all the things, all the days.

But today is my day. It is my fifth birthday since I was diagnosed with terminal stage 4 kidney cancer. My fifth birthday since I was told, with certainty, that I would be dead in six months. Six months would have been June 2018. And I did almost die in June 2018. Almost. Yet here I am.

Not only am I here. I have become a mystery, a miracle of science. I have become what researchers hope will be the future for more people like me. But no one–not me, not the oncologists, not the researchers working day and night–understand why it was me. And not Brandie. or Ann. Or Laura. Or any of the people who were diagnosed alongside me, who helped me make sense of it all, but who are no longer here.

I am not just still alive. I have been in complete remission–meaning the drugs I’ve been getting via IV once a month for four years–zapped the tumors. All of them. There is no visible cancer on my CT scans, and there hasn’t been for two whole years. Two years complete remission means that I actually get to stop cancer treatment. Stop by choice. Not stop because it was too toxic, and the strain was killing me faster. Not stop because the drugs couldn’t contain the cancer, and it spread. Not stop because I died. Those are the usual ways you get to stop.

No. I’m allowed to stop because I can choose to. I can take the chance. I can stop and see if the cancer stays away. I’m allowed to hope that we got it all, that I may be *cured*. (Caveat: Declaring cure is a long way off. Long LONG way. Maybe ten years before we can safely say that word. But my onc has whispered it, once or twice, with the fingers crossed.)

I have become that person. Residents and fellows–doctors in training–parade into my exam room, asking me questions,checking me three times with the stethoscope, with suspicion in their eyes, not believing what they see. I am the woman–who lived? A Harry Potter story for the GU oncology department. Something they thought was a fiction. Even at my cancer hospital, which is large, thousands and thousands of patients, the one people travel hundreds of miles to get to. There are only two: Me and one other guy.

Me and this other guy. We were on death’s door when a new drug/tech was FDA approved. It’s immunotherapy. (Immunotherapy. It’s not chemo. Chemo nukes all of your cells hoping to kill more cancer cells than healthy cells. Immunotherapy is the cancer party pooper. It pulls back the mask cancer cells wear to hide from your immune system, so they can grow with abandon. Immunotherapy shows your immune system there is a threat, so your immune cells attack.)

That other guy? He’s my freaking hero. He was in hospice, when his onc said, “Let’s just try this one more thing. We have nothing to lose.” And now? He’s got no tumors. He’s out living his life, looking normal and healthy. No one who looks at him would ever know what he had been through.

So it’s me and that guy. Celebrating birthdays. Only two of us. So few of us. About 5 percent, according to the clinical trials. But the oncologists. There’s a glimmer in their eyes. For the first time, they see hope. For the first time, they can see a future where they might not have to bury ALL of their patients, and so swiftly, most in the first year or two after diagnosis.

The new fellow, a smart young doctor and researcher, was so excited to meet me. He said he will call me. One day, when there are a couple more of us. When there are enough of us to officially do a clinical study to figure out why we were the ones who lived.

I hope the call will come, and soon. Because I am happy to be alive. But I also carry a sadness. A guilt? A confusion. Why was it me and not the others? I am not a better person. I didn’t deserve it more than they did. I didn’t fight harder or have a sunnier attitude. I didn’t have more faith. I wasn’t a better cancer “warrior.” I cry for them, when they go. I am angry when they go. I feel the vice grip tighten on me more with every death.

I need to deserve to be here. I need to make this extra time worth it. I need to be worthy. But I never feel worthy. It is impossible to feel worthy. All I can do is keep trying. Keep trying to earn it. Keep trying to prove that giving the gift to me wasn’t a mistake.

Life is the greatest gift. Time is the greatest gift, and I am not sure I fully grasped that until I was stamped with an expiration date. It wasn’t until I was dying that my eyes truly opened. Who matters, what matters became so bright, so clear.

Don’t be like me. Don’t keep your head in the mud. Lift your head up and look at life through clear eyes. Don’t wait to appreciate your life. Don’t wait for meaning to come from outside. It is you who add meaning to your life. YOU. Every day. You have to choose to make your life meaningful. Your actions and intentions make your life.

I don’t have the answers. But I am thankful. Thankful for the tears in my Mom’s eyes, as she squeezes my hand, relieved she didn’t have to bury her youngest child. Her baby. In the hugs from the people who love me, the ones who were with me when it was really really bad.

And oh, how bad it is, to be plucked from your life in the middle.

No one tells you. The worst part of dying young(ish), is hurting all the people you care about the most. How terrible it feels to see that your death is causing them the worst kind of pain, and to know that it will linger for a long time. These are the people you’ve tried to shield from pain with your love. And to be the cause of so much? That is the absolute worst feeling.

But today there is no pain. Today there is hope. Today there is joy. Today, I have survived to see another birthday.

Thanks to the generosity of my family, friends, and fans, we have raised $6,000 to date for kidney cancer research, benefitting the Kidney Cancer Research Alliance, which gives $100,000 grants to researchers studying novel new treatments, and KidneyCAN, which fights for research dollars on a federal level for kidney cancer, which is one of the top 10 most common cancers, but receives very little research funding.

One thought on “On birthdays, kidney cancer, celebration and sadness.

  1. Elizabeth Kramer says:

    Never wonder why please. You are here. You are good to those around you. You have created works that bring incredible joy. Your stories came when I really needed them. Someone has to get it. Someone finally gets to survive. There is no why. It just is. Life is pain, and suffering, and death. We will all one day lose everything and everyone we ever loved. So, we might as well be happy (Things I learned when I became a Buddhist, philosophy-wise, spread happiness. It is making a good cause. Being happy well yeah sometimes we have to work on that part!). It isn’t a contest, and we can hope there is something after it all too.

    Liked by 1 person

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