Fear and Faith…and Rollercoasters

So, I’ve had my first rounds of Dexamethasone (steroid) and Aredia (the doc went with that instead of the Zometa for bone strengthening; it’s essentially the same thing). I have yet to start the white blood cell killing chemo pill. A few side effects, but they have passed and I feel more or less “normal”. We’ll see how that holds up after I’m on the Revlimid.

Today was my second radiation treatment. I noticed a lady in the waiting room who was wearing a mask (for her protection), and made it a point to make eye contact with her. She was clearly very sick, and it was hard to tell how old she was as she had very little white fuzz on her head, but I’d guess around 50 if I had to. I didn’t want to look through her or quickly away from her, even though I think it is our instinct to do so when we are face to face with something that makes us shift in our chairs.

After my treatment, I was seated in a smaller waiting room to wait to see the doctor (for my weekly check-in). She was in there, and we started chatting. She was very sweet. At some point, she asked me what I “had” and I said “myeloma”. “Oh, that’s what I have”, she said without missing a beat. My stomach flopped in my gut. It was all I could do to keep myself from bursting out in tears right there. It’s one thing to know in your head what may lie ahead for you, but it is something completely different to sit in a room having a conversation with what you might someday become, fully aware of that possibility. It is absolutely terrifying. It is not something any of us wants to be. It is not something we want our families to have to bear witness to, care for, and mourn. And yet, as my doctor said, there it is. It is difficult to realize and face one of the possible outcomes of the road we travel.

My doc made some good points. My cancer seems to be very responsive so far to the lesser medicine of mere prednisone, and that indicates that it is a highly sensitive strain, as opposed to one that is more resistant to treatment. And, no matter what we think lies at the end of the road, or may lie there, there are never any guarantees of anything, and the most important thing is to live each day while we can, while it is here, and while we are in it.

So, here I sit, trying to figure out exactly what I am supposed to do with all of that. The tears have mostly passed. My faith is starting to kick in. Faith that there is a road we are each intended to walk. Faith that no matter how long, short, seemingly easy, or tough, it is important not only to us who walk it, but to those with whom we interact along the way. Faith that no matter what, no matter what, I will be okay.

I remember once when I was a kid, my parents took us to a carnival. There was a roller coaster. Like my nephew, I was a late bloomer to the coaster joy, and thusly, the notion of the coaster (which was probably a kiddie ride at that) was not one that I was excited about. I remember after it started, the panic, and me screaming at the top of my lungs, “Stop the ride! I want to get oofffffff!” I find myself thinking of that moment a lot these days. And then I find myself thinking about the scene in the movie Parenthood, where Steve Martin and Mary Steenburgen are on the roller coaster – he hating it and she loving it. The message being, this is the ride you’re on. Whether you meant to get on it or not, you’re on it, and you’re on it for a reason. You somehow chose it. It chose you. How you experience it is your call.


4 Responses

  1. Sue, you are a really gifted writer and I have enjoyed reading your updates—well enjoyed the writing and feeling informed — not so much the part that you are having to be on this roller coaster. 😦 Know you are not in this alone. You have come to mind a lot in the past month or so and I have made a point to pray for you. Would love to see you soon!

  2. Thank you for keeping up, Lori. It means a lot to me. I really appreciate the thoughts and prayers, too. Knowing I have friends pulling for me helps to bolster me up when I start to get down.

  3. Hi Sue, I am Clair’s friend. I found your blog via Clair on FB. Thank you for writing this update. Forgive me for being intrusive. Tonight I got a book called “The Places That Scares You” by Pema Chödrön out of my bookshelf as I want to share a section with you in case you have not read it. So here she says:

    “Anxiety, heartbreak, and tenderness mark the in-between state. It’s the kind of place we usually want to avoid. The challenge is to stay in the middle rather than make us more rigid and afraid. Becoming intimate with the queasy feeling of being in the middle of nowhere only makes our hearts more tender. When we are brave enough to stay in the middle, compassion arises spontaneously. By not knowing, not only hoping to know, and not acting like we know what’s happening, we begin to access our inner strength.

    Yet it seems reasonable to want some kind of relief. If we can make the situation right or wrong, if we can pin it down in any way, then we are on familiar ground. But something has shaken up our habitual patterns and frequently they no longer work. Staying with volatile energy gradually becomes more comfortable than acting it out or repressing it. This open-ended tender place is called bodhichitta. Staying with it is what heals. It allows us to let go of our self-importance. It’s how the warrior learns to love.

    Holding the paradox is not something any of us will suddenly be able to do. That’s why we’re encouraged to spend our whole lives training with uncertainty, ambiguity, insecurity. To stay in the middle prepares us to meet the unknown without fear. The in-between state—where moment by moment the warrior finds himself learning to let go—is the perfect training ground. It really doesn’t matter if we feel depressed about that or inspired. There is absolutely no way to do this just right. That’s why compassion and maitri, along with courage, are vital: they give us the resources to be genuine about where we are, but at the same time to know that we are always in transition, that the only time is now, and that the future is completely unpredictable and open.

    As we continue to train, we evolve beyond the little me who continually seeks zones of comfort. We gradually discover that we are big enough to hold something that is neither lie nor truth, neither pure nor impure, neither bad nor good. But first we have to appreciate the richness of the groundless state and hang in there.

    It’s important to hear about this in-between state. Otherwise we think the warrior’s journey is one way or the other; either we’re all caught up or we’re free. The fact is that we spend a long time in the middle. This juicy spot is a fruitful place to be. Resting here completely—steadfastly experiencing the clarity of the present moment—is called enlightenment.”

    We are all in transition. Hang in there!!

  4. Hey Love,
    You blog is what i knew it would be; honest, fearless and grammatically correct ;). I’ve always said you have a talent for this sort of thing.
    You are on my mind a lot.

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