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"Not those people"

Monday, March 17, 2014

On Thursday our goddaughter Rebecca will have yet another MRI to determine whether the toxic chemicals being poured into her system are successfully keeping her brain cancer at bay.

Rebecca is 5 years old.

She was diagnosed in August. Ferrett and I were there in Philadelphia with her and her family while she underwent brain surgery to remove the tumor. We were there to see the x-rays and hear the discussion of the diagnosis and the treatment plan and the prognosis. We cared for and cuddled her siblings, and hugged her parents and did what we could to help care for them. We have been along for every MRI results meeting since they were able to return home permanently after proton radiation treatment. We have walked for cancer in Rebecca's honor, donated to and helped raise money for her sister having her head shaved for St. Baldrick's just yesterday.

I still can't quite believe that Rebecca has cancer. Because the Meyers aren't supposed to be a family that goes through this. They are wonderful and amazing and I consider it one of the greatest gifts that I am part of their lives. In my mind, this can't be happening because they are simply "not those people."

The thing is, "those people" is not a derogatory designation in my mind. My extended family? TOTALLY "those people." If one of my siblings or cousins was diagnosed with cancer, I would be saddened and shocked, but I would be able to accept it. It wouldn't feel so impossible. When Ferrett's stepdad contracted ALS, it was awful, and that he died so quickly from it was terrible and tragic. But while I felt like it was unfair and I was grief-stricken, I never went through this ongoing sense of, "but...this just can't be!"

I'm not quite sure why Rebecca's cancer feels so different from so many other illnesses and tragedies, but I do remember the one other person I felt this way about: my friend Annie, who died of inflammatory breast cancer when she was just 36, the mother of four small children. Annie and Grant were also a family was wonderful and amazing, and the notion that Annie, who worked so hard to feed her family fresh, organic food and lived such a green lifestyle, could have this genetic timebomb within her that mowed through all those good decisions? It just wasn't right! It's been at least 14 years since Annie died, and I still get moments when it pulls me up short.

Because the fact of the matter is, there is no magic that protects any of us. There is no magical good fortune that keeps illness and accident and tragedy at bay. We are, each of us, vulnerable.

I don't know how to end this. It's not a happy entry. I have no deep insight that leads to a positive outlook right now. Do I just fall back on platitudes: hug your loved ones; appreciate life's every moment? The truth is that this is a dark and scary place, and I'm not in a good headspace about it right now. I spent yesterday afternoon cheering on Carolyn and her friends as they got their heads shaved, getting snuggles from Rebecca, and visiting with friends as we all hang on together trying to feel like we are making a difference. And we are, overall. The money raised goes to research that will help kids in the future, just as the money raised a decade ago and more went to the research that has led to developments that are giving Rebecca a good chance of beating this.

But each of us, in the moment, is just clinging to each other against the cold, howling winds of chance. We stick together for comfort and support. And right now all I can think about is Thursday, when we will be there with Rebecca's parents to hear the verdict once again. I believe right now that it will be fine, that the MRI will be clear. But believing it and knowing it are two different things, and we won't know until then.
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Member Comments About This Blog Post
    1863 days ago
    I have no words of wisdom to help ease your pain. It doesn't make sense. It's cruel. It's not fair. You are a wonderful friend to Rebecca's family. What a treasure you are for them.
    1864 days ago
    Cancer is a terrible thing. My daughter beat breast cancer three times but the fourth time was inflammatory breast cancer and as you know, it is almost impossible to beat. She did have about a year more than they thought she would have but you don't think you are going to lose a daughter at the age of 46. I will say a prayer that her test comes out clear and put to rest your anxiety for her and her family.
    1864 days ago
  • HILLSLUG98239
    We have a deep need to understand. Even though we know intellectually that diseases can be capricious and strike anyone, we look for fault: you smoked, you got cancer. You drank, you got cancer. You lived downstream from a chemical plant, you got cancer.

    When a disease like this strikes a child, we're unmoored from the cause and effect chain we cling to. There's no one to blame but the fates. And then we have to stare in the face of the cruel nature of fate: you were dealt a lousy hand, and no amount of bluffing will change that.

    Although no one in my family has cystic fibrosis, I'm very active in fundraising for the Cystic Fibrosis Foundation. CF is that genetic lousy hand of cards: You don't know you're a carrier until your child is diagnosed. Even if both parents are carriers, there's only a 25% chance their child will be born with a CF mutation.

    There have been amazing breakthroughs in treatment, but only because of the passionate activism of CF families. What I see in CF families is a lesson everyone should learn. They spend their lives having experiences and building memories. The median age of CF patients is now 40, but there are particularly nasty variants of the mutation that tend to mean a much shorter life span. If your child succumbs, you want to know you did everything you could to fill that life with meaning and experiences.

    Childhood cancer is similar, except that all babies are tested for CF at birth (at least CF families know early on, as opposed to getting a diagnosis after months of questions). It's unfair. It's terrible. You hope for the best, but you also treasure every moment, just in case. And it takes awareness and passionate fundraisers keeping hope for a cure alive.

    I will hope alongside you. I am hopeful Rebecca will be one of those passionate fundraisers when she's an adult, always giving thanks for the medical team that saved her life, and agitating for more dollars because no child should have to go through what she did.
    1864 days ago
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