Thought Experiment: Cancer, Marching, and a President’s Signature

I’m sharing this story in response to the inauguration and in response to how quickly President Trump has acted to gut the ACA.

I’m also sharing it in response to how it felt to march today with my family, and to tell our piece of the story behind this photo with the world. The photo was taken by Fairbanks photographer Robin Wood, and wound up being shared by the New York Times in a collection of photos from women’s marches around the world.

Last week when I told my 10-year-old it was up to her if she wanted to come. Appalled, she said, “Mom, protests aren’t safe.” I assured her it would be both safe and peaceful. She replied, “You’re protesting Trump. That’s not safe. Just look at how he has treated people who protest at his rallies.” My child did not believe in her heart that this county is a safe place for peaceful dissent. Our new president engendered this fear in her. By the end of the week she had decided to come. Last night she chose the words for her sign herself, choosing an issue that affects her personally. I am proud of her for marching today.

I am proud of my town. I am proud of my friends. I want all of you who do not know us to be able to imagine for a little while what it is like for us, what this new presidency means to us on a deep and personal level. Normally, I only share stories like this on a private caringbridge site that I keep for family and friends who have supported us since she was diagnosed with cancer in 2014. I want this story to accompany this photo into the world.

Please share this freely. Please comment if you wish.

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I want you to try a thought experiment. Set all these imaginings back in 2014 in the world that was then. Not the world that is now. You will understand the importance of the setting later on.

You will have to be brave. This will not be easy. I am going to ask you to imagine the worst thing. Start with cancer. That’s a bad thing, yes. Cells rapidly multiplying. Cells out of control. Cells who want to live and don’t know that their skill for living kills people.

You are not allowed to imagine the cancer in your body. You probably did. That’s the cancer that we think we’re all afraid of. But it’s not the scariest kind. You’re not allowed to imagine these cancer cells in an adult at all. The person you have to imagine having cancer is not someone about whom we might have the luxury of saying “oh, but she had a full life.”

Imagine a child has cancer, your child. Yes, the cancer cells are in your child. Make her your daughter. Make her eight, a third grader. If you don’t have a child think of it this way: an eight-years-old is an oasis. No babyhood with its attendant diapers or fears. No tweeniness, with its attendant battles and sass. That moment when the tiny being you made is just on the verge of taking care of herself.

Now give that daughter cancer. A tumor. A big one. Make it about two pounds. Imagine a loaf of bread or a brick of cheddar cheese. That’s how the surgeon is going to describe it to you. And add that said tumor has exploded inside your child’s body, spreading malignant liquid throughout her peritoneum, a word you never thought about much. Imagine waiting for the pathology to come back.

Now consider this list: surgery, recovery, radiation, chemotherapy, lung biopsy, scans, scans, scans. In your mind, build your life of these words. Add nausea, tantrums. Cut out employment. In this experiment, you don’t get to have that anymore. Forget your house too because the only place your daughter can get treatment is 360 miles from your home. Forget haircuts and exercise as well.

Do you feel uncomfortable? If this experiment was not in your mind, but instead a reality in your child’s body, could you sleep? Add small moments of relief. Name them “social worker,” “child life counselor,” “pediatric oncology nurse.” If you are lucky you have devoted friends and family. If not, imagine this all being twenty times worse for you.

More relief: this experiment is set after March 23, 2010, the day former President Obama signed the Affordable Care Act into law. Remember, it’s December 2014. You don’t know yet whether your child is going to survive because the pathology hasn’t come back, but you at least know if she does live, at least she won’t wear a scarlet C the rest of her life. At least she will be able to get insurance to cover her later in life. And she will need coverage because she will always have a higher risk of secondary cancers, and her one kidney will require life-long visits to a nephrologist. But because her cancer appeared in the post-ACA world, at least this child would still be a person and not a walking pre-existing condition.

If she lives, you will be able to let her go into the world and be an adult without fretting over her impending medical-billing-induced financial ruin. Try to convince yourself this is “lucky” for her. When your child has cancer, even a relief that small and hypothetical helps.

As you conduct this experiment, never ever forget how much you would give to have cancer instead of your daughter. Katness-like, you would shout, “I volunteer!” Imagine how it feels that this is not an option. Never an option. At some point every single day make a little bargain with the universe, whisper “Please just give me the cancer instead of her.” Every single day feel the universe ignore you.

Now jump ahead two years in your mind. Here comes the second part of the experiment.

Here’s the good news: Your child lived, all one-kidney, scarred-belly, spit-and-vinegar girl, she’s ten now and showing her sass. Imagine the relief. Imagine the way the specter of a child’s possible death shadows the love you have for her. Imagine how your empathy has grown for all people suffering, for all parents. Imagine how your heart breaks for refugee parents or parents of shooting victims. Imagine how your heart breaks for people every single day.

But your child is alive. You are lucky and you are not allowed to forget that in this experiment. (There are many other parents whose children are not alive. And you heart breaks for them.)

But now it’s 2017. And our new president, whose heart seems to break for no one, as one of his first acts in office decides to reaffirm his commitment to repeal the legislation that forbade insurers from discriminating against your child for her unfortunate medical history.

Imagine this is a president who feels this is so important that he went into the Oval Office in-between his inauguration and a ball in the evening. The paper will say he signed the paper “between festivities.” Imagine signing something like that being associated with such a happy word.

Imagine him in his blue suit signing with his right hand. The same hand he held over a Bible during the first of the day’s “festivities.” His wife, who held the Bible for him, lives in a golden penthouse. The White House is not golden enough for her. His son, who stood beside her has toys that cost more than your child’s chemotherapy treatments. Imagine that this man could sign a check to cover an entire six months of chemotherapy treatments and not blink.

Imagine what his casual signature between “festivities” means to your daughter. To an insurance company she will be only the person who once had cancer. Therefore, all cancer she might ever have later on will be her financial responsibility. In their profit-perverted reasoning, her eight-year-old self will always be to blame. According to them, they should not have to pay her bills.

As you imagine this new president signing this document, the pen, the ink. Remember the moment early in her treatment you had to refuse to leave the pediatric radiologist’s office because the insurance company was going to insist your child be treated by an adult radiologist with no experience with her type of cancer. You sat there politely and told them you weren’t leaving the appointment. Remember how you had to look at your social worker’s card then to call her. She wasn’t even in your contacts yet. Remember how much in that moment you wished you could have written a check to cover the cost of her entire treatment.

Now imagine your daughter’s next scan is only two days after this new president signed the paper. Imagine the fear creeping inside you. Not just the fear that the cancer’s back, an extension of the terror you felt when she had a bad cough a few weeks ago or the deep breath you have to take any time she tells you how tired she is.

Yes, she’s two years post-diagnosis with no evidence of disease. That’s good. That’s very good, but you are a parent who knows what the chairs in the pediatric surgical waiting room feel like. You know how long it takes a surgeon to remove a kidney, a tumor, a power-port. You watched the surgeon pull a long tube out your daughter’s back, a tube that had been attached to her lung after her biopsy. He counted, “One, two,” but never said three, and your child screamed as the bloody tube whipped out. Imagine you had seen that with your own eyes. Remember that is only one of the things you have seen.

And then imagine how a scan feels even after two years. Even after clear scans.

Now imagine what the parental anxiety going into that scan feels like knowing that the new president of your own country wants to end the legislation that gave you such small comfort during your daughter’s chemotherapy and radiation.

These are the two things to imagine for the next 48 hours of this experiment:

1. If your daughter is clear, still no evidence of disease, she will still be marked with a scarlet C. Think about that.

2. If she is not, you are now in a world where both Medicaid and the ACA are targets. Think about that.

There is no answer in this experiment. No outcome. Just feel what you feel and pay attention to it. Do not forget that your daughter will never not be a person who already had cancer when she was eight. Do not forget that you will never be allowed to volunteer to take the cancer for her. Both of these facts will probably make you sad.

Just think. And try as hard as you can to get some sleep while this new president holds office.

 

Comment

5 thoughts on “Thought Experiment: Cancer, Marching, and a President’s Signature

  • Thank you Nicole! I appreciate your writing so much. You make me feel stronger and more committed than ever to fight for affordable health care for everyone!

    Reply
  • Nicole, Your words are powerful — and empowering for all who participate in the experiment to imagine your pain. I hope that your piece will be shared widely. Like Becky, commenting above, I will do all that I can to fight for affordable healthcare for all!

    Reply
  • Nicole, so beautifully written. Never having lived through this type of experience I can only imagine what your family has gone through. Today, reading your challenge to us, you have made the experience all too clear for me. I cannot stop the tears. You also strengthened my determination to speak out and take action of some sort to prevent the repeal of the ACA. I am once again reminded of the lack of empathy and selfishness our leaders demonstrate. Particularly when those congressional representatives will enjoy free, full benefit medical coverage for the rest of their lives. I pity them their small minds and lack of understanding for the little guy. Thank you so much for waking up the restless being inside me and giving me the impetus to get involved! Take care and blessings on you and your family.

    Reply
  • You have eloquently put into words how I feel. My daughter was nine days old when we found out she had a cancerous tumor the size of a lemon (in an 8lb baby). We almost lost her but doctors were able to bring her back with CPR, surgery and three weeks in the NICU. Now she is temporarily cured but it could always come back and the ACA changes are really hitting home. I was hoping with my second child I might be a stay at home mom for a few years but I don’t think I will be able to now, as my job provides the benefits and my husband works for himself and we likely won’t be able to find coverage for all of us unless if it’s employer sponsored program. So, that (albeit, priveleged) dream is shot. Thank you for sharing your story.

    Reply
  • Oh Jocelyn, my heart is with you. Insurance worries become a secondary trauma for families with critically ill, chronically ill, or disabled children. I do not understand the lack of compassion that underlies the enraged response people (including our new president) have toward the ACA and the people in our country who need it. My hope in writing this was to encourage empathy. More accurately, to demand empathy, which seems to have evaporated in our current era. Thank you for sharing your story.

    Reply

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