Side Effects

There’s a quip about the cure being worse than the disease. No need to tell me that at 2 a.m., when my child is keening with stomach pain. We’re in the wilderness now – trying a relatively new drug not tested on children, for rare tumors with no proven treatment path. My kid is filling up the bingo card of side effects. And each day, I am supposed to hand her the drug that does this.

My husband and I sit up with her for the next two hours, hoping that the cramping recedes quickly. Eventually, the pain passes and she is finally able to fall into a deep, restful sleep. I am wide awake. I’ve sent a message to her doctor. This is untenable for the long term. Any ideas?

canstockphoto10766394Now that she is comfortable again, I am introspective. What am I becoming? I don’t sleep well anymore, even when a night is uninterrupted. I have copious notes, dates and times of this medicine, that reaction, what works, what didn’t. I’m on constant alert, vibrating with anxiety and now, caffeine. My stress hormones have cozied up to my menopause hormones, so every five minutes, I flash into a drippy sweat.

I’ve read every article and study I could find about the drug, the tumor, the side effects. After reading about one side effect treatment regimen, I asked the doctor if we couldn’t try a particular drug. Reading the same article, the doctor said sounds like it might be an option and wrote the prescription. Criminy, they realize that I only have a liberal arts degree, right?

But this is the speed of science. As quickly as one protocol gets established, four more options pop up. That’s a good thing, but it means everyone has to be read in, constantly.

canstockphoto17182715.jpgWhile I consider myself a relatively intelligent person, I’m no genius and the fact that our role as parents in her care is so outsized, really freaks me out. It has served me well to stay in the moment, except in the moments after a crisis has passed. Groundless again. My brain doesn’t know whether to stay on high alert or to relax. I am afraid to relax, as if my tension were a shield against calamity.

I think about the beginner’s mind from Zen Buddhism. If I looked around me, with fresh eyes, at this very moment, what do I see? My daughter is sleeping well. As is Pete, our old tomcat, with his little snores on the floor, near my feet. Snow is falling outside, muffling the city sounds. I’m tired, but healthy. The house is warm and smells of coffee and last night’s stew. My husband is able to work from home after the long night. I explore this moment, writing here, grateful that I still can. Open your eyes. Breathe.

I was thinking about advice on recharging phone batteries. With lithium-ion batteries, the lifespan of the battery doubles if you partially charge and discharge the battery. Then there’s parasitic loading – when you are using an item while it’s charging. It can induce mini-cycles, causing part of the battery to deteriorate at a faster rate. The writer in me wants to wring a metaphor from it.

canstockphoto2478779.jpgBeing a caregiver or a parent can be like this. You have to keep going, no matter how low your battery is. The only protection against deterioration is finding the time when you are only charging. The moments between crises have to be more than just time when bad things aren’t happening. This is tricky – the space between shaking your fist at the sky and noticing how beautiful it is. Enjoying the buoyant, cool water just before you feel like you’re drowning.

So this morning, I practice. I fold laundry at the kitchen table and watch the snow fall. I listen to Dar Williams sing “After All”. You catch your breath and winter starts again…

and the long night falls away.

 

 

36 thoughts on “Side Effects

  1. I have laughed, snickered and agreed/disagreed with you. Now I cry. I cry with you, because I too am a parent, and with the joy comes the pain. Your own pain and the pain you’d give anything to take away from your child. Your child’s pain. But you can’t. But you can do exactly what you are doing, being there. Holding her hand, or stomach, or head, or arm, or just holding her, cradling your child. That is love, and love wins every time.

    Liked by 1 person

    1. It’s a very specific type of torture, isn’t it? Still, I’m learning some new skills. Like napping. It reminds me of when she was a baby and people constantly told me to sleep when she does. I never followed that advice then, because I could never nap during the day. Now, I’m learning how to do 20 minute power naps like a champ.

      Liked by 1 person

  2. I am struggling to find words that are helpful or soothing. I wish there was something I could do to help or even better, to make it stop. I am sitting beside you in spirit, sharing whatever fortitude I have.

    Liked by 1 person

      1. So good to hear your daughter had a better night Michelle. And I’m not surprised that you are constantly on alert. I was the same when my mother lived with me when her health was so bad. So nap whenever you can because your body, mind and soul need rest and replenishment. Make sure you eat because you also need nourishment, ask friends to help with your to-do lists and yes, take it one day at a time.

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  3. Clicking a “like” button seems so vague and unhelpful. I wish there were a button that conveyed more accurately, “what you’re going through sucks, but know that an army of people care and send their support and good wishes.”

    Liked by 1 person

    1. If there are lessons to be found from all of this, one of the biggest ones is going to be empathy. Most of the people in my family of origin have been fairly healthy (not so mentally, but physically) most of their lives. Stepping into the world of chronic or life-threatening illness is like stepping into an entirely different culture. Suddenly, you feel disconnected from everything and nothing matters like it did before. So continuing to write here, exchanging comments, this is a tenuous thread of connection that is important to me. And I think that makes it helpful.

      Liked by 2 people

  4. I’m so glad you’re working with doctors who respect your intelligence, your commitment to this one particular Person out of all their patients, and your ability to bring both to bear to work with them in finding solutions. Yes, it’s an enormous burden, but I think not one you would willingly hand over completely to anyone else, because who else could care so completely about her?

    Still praying, on and off all day and every day.

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    1. Thank you for your kind thoughts and words. I’m definitely learning to be an advocate for her in the medical world. I feel like there’s a little payback involved here – I’ve never been particularly interested in medical details and often cringed when people would relay their stories. Ha. Who’s making people cringe now?

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      1. Yeah, life has a way of humbling one! Well, for what it’s worth I don’t think anyone here is cringing. You’ve got this, Michelle – and, all in our different ways, the various members of your support network in this small corner of the blogoverse are rooting for you, and eager to read whatever you choose to share.

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  5. I am one more person whose heart is resting with you. Our intention, a powerful force. If nothing else, feel how deeply loved you all are. A single truth in all the confusion.

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  6. My thoughts, too, are with you, Michelle. Your big, brave heart, your sharp mind and your deep love for your daughter have been obvious since I started reading you. All are being pushed to their limits now by this terrible circumstance. I am sending love and also gratitude, for your sharing with us — including the beautiful song, new to me.

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    1. Thanks Cate. Things are finally settling down a bit now in the sense that we’re meeting whatever arises with a little less drama and more just “okay, let’s solve this problem”.
      I’ve always enjoyed Dar Williams’ music, but there are times when it resonates/comforts a little more. I’ve had “Beauty of the Rain” playing in my head for weeks. There is a line “the beauty of the rain is how it falls” that connects in my head with presence and process versus outcome and certainty.

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  7. I can’t begin to imagine what you are going through. I recently interviewed a very wise woman who leads a caregiver support group at the cancer wellness centre where I work. I’m sure you already know this, but I thought I’d pass along her gentle suggestions to caregivers:

    “I can’t stress enough how important it is for caregivers to take care of themselves. They may feel selfish in doing so but it is in fact a selfless act. Because only by taking care of themselves can they better care for their loved one .”

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    1. I’m a huge proponent of self-care. Sometimes, though, it seems I only manage it in in theory. Still working with a great deal of insomnia, but things are settling down a bit. Hoping to have some better nights – and with it, the clarity and energy to care for other parts of my life.

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  8. Oh my, how difficult! I admire your ability to see the beauty around you, despite the ongoing extreme concern you have. I certainly hope something wonderful will appear on the medical horizon to help!

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  9. I press the “Like” button, meaning only that I hear you and feel for you, not that I like this at all. If pressing that “Like” button provided some measure of comfort or reassurance, I would press it until my fingers were raw. I so wish I could do more.

    Like

    1. That “Like” button is forced to do heavy lifiting on a lot of platforms. I would just like an “I feel you” or “I appreciated that you wrote this” button. I think that’s what we’re all looking for – to be heard/read/understood. Things are improving in terms of our day-to-day and I think that is our goal for now. Thanks for the kind wishes.

      Liked by 1 person

  10. You do what you do. As the parent you are, you really have no choice but to do every single thing possible.

    Our information age does pose strange relationships between the learned professionals and those they treat. I like to think it’s better than it was a decade ago.

    Sorry to read of your challenges. If it helps you to write, then please do. Hugs from Jersey.

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    1. Hey stranger! Good to hear from you. Things are settling down here and the side effects are getting a little more manageable. The internet actually provided some of that relief. Most of my info comes from peer-reviewed articles in medical journals. It’s easy to see not all sources and info is equal. You learn that the first time you look up some ache and pain and suddenly you’re at death’s door.

      Thanks for checking in and sending the good vibes.

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    1. Thanks Kim. It’s a tricky time – a sick teenager is a parental challenge. At a time when she needs her independence, she’s forced to be dependent. We’re doing the best we can do to give her some freedom while managing her medical issues.

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  11. We have to be our own healthcare advocate, particularly in America. I wish you the best in reading, learning, and talking with your daughter’s doctor. You’re doing what you can, and that matters a lot.

    Liked by 1 person

  12. The mother I am cannot like this post, but can empathize and understand. I know this pain, weariness. I’ve been there. It’s been a while, but I remember well, especially the feeling of helplessness. But I also remember the tenacious spirit that saw us through that trying time. I see that same tenacity at work in you, Michelle. May you continue to practice and rest when you can, while you also keep going. A mother’s paradox, for sure.

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    1. Thanks Cheryl. I look back on this past year and all of the situations and obstacles our little family has navigated and I’m slightly amazed. You never know how resilient people can be until put to the test. I’m working on the self-care, which is challenging even under normal circumstances for me. One foot in front of the other…

      Liked by 1 person

  13. It is impossible to comprehend the cocktail of emotions that consume you, Michelle, but your ability to communicate them, to persevere, to become and stay aware — your insight — is inspirational nonetheless. All the best to you and yours through this holiday season and beyond. Stay strong; recharge when you can. ❤️

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    1. Thanks Tom. Best wishes to you and yours as well. The upside of all of this is that it has been an opportunity to downsize the holiday season. We are only doing the bare minimum and it makes us wonder why we didn’t do it sooner. It turns out we can get the same level of joy with far less work!

      Liked by 1 person

  14. Sending you a hug to keep in your pocket – to pull out and use when you feel most weary, vulnerable or afraid. Wrap yourself in it and let it hold you up. Thanks for sharing with us, Michelle.

    Like

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