October 27, 2015 at 11:50 am (Uncategorized)

Andrew is terrified of needles. He’s due for an immunization in a few weeks, and he has spent the last couple of months complaining, whining, and begging not to get the shots. Even worse than immunizations is when he has to have blood drawn. The last time this happened he nearly passed out at the lab. He was so shaky and nauseas that the nice phlebotomists fed him shortbread cookies and apple juice. Once home, he spent the rest of the day claiming he’d lost too much blood to do anything but sit on the couch (they drew two small vials) and got woozy anytime anyone mentioned a needle.

I find it ironic that my one and only offspring is needle phobic since I am the queen of needles these days. I get stabbed in the chest every time I have to go get chemo. Well, that’s maybe a little bit of a dramatic way to put it. But when I started chemo six years ago and it quickly became clear I was going to be having regular infusions for the long hall, the White Coats had a port installed in my chest. A port is medical appliance surgically installed directly beneath the skin, and a catheter connects the port to a vein. The port makes it much take in large amounts of fluids over a long time, and also helps avoid at least most of the sting some of the drugs can cause when infused through the smaller veins in the arm. To “access” my port, a nurse literally jams a sizable needle directly into my chest. It doesn’t actually hurt that much (I always turn down the offer of an initial numbing shot – why get two shots when one will do?). Still, it takes some discipline to sit still and not cringe when the nurse is coming at me with what looks like a spike.

I’ve gotten accustomed to even bigger needles since I’ve been on Acthar. Jay helps me draw up 80 units of the golden gel into a syringe, and then twists on a ½ inch needle. He always looks away when I pinch up a hefty amount of my leg muscle, take a deep breath, and then plunge the needle in as far as it will go. This is called an intramuscular (IM) injection because it passes deep into muscle tissue. It hurts like hell. Often, I have a reaction to the injection, and my leg swells. Always, I bruise badly. But, still, I try to be stoic. I do my best not to complain (well, not too much), and when the time comes for an injection I aim to do it without hesitation or too much worrying. Andrew, on the other hand, claims he will “puke everywhere” if he were to watch one of my Acthar injections.

Although I like to tease Andrew about his fear of needles, I am actually relieved that he doesn’t seem to feel the need to mimic my attitude. Andrew is already too stoic about most things related to my medical situation. When I disappear out of his life for one of my mega-long hospital stays without any warning, Andrew doesn’t fall apart. In fact, I wish he would complain more and rail against me. Instead he is quiet, contained and all-too accepting of my time in the hospital.

Andrew’s been living with my illness for his whole life. He was just 3 months old when I was diagnosed with sarcoidosis. His growth milestones have occurred against the backdrop of my disease becoming more severe and taking over more of my life. Just this past August, Andrew started middle school only three days after I was released from a 33-day stint in the hospital. He didn’t blame me for making his life chaotic at such an important milestone. When I expressed my worry over this, he told me, “It’s OK, Mom. I’ll be just fine.” And he was. He went through the transition brilliantly.

Maybe I’m being too symbolic, but it feels to me that Andrew’s demonstrative stance against needles is his way of drawing some boundaries between himself and my disease. When he was five, he could recite my entire medication list, including the complicated names of my chemotherapies. By turning his back—literally and metaphorically—on the many needle jabs that happen around our house, it feels like he is saying, “Enough.” And I like it.

1 Comment

  1. Sarah said,

    Our children are fascinating in their coping mechanisms. As an adult, I can generally predict how I’ll cope with something; with our boys, though, I never know what strange behavior will emerge when dealing with obstacles & trauma.
    Andrew is not just coping, he is thriving. He is learning about himself and his boundaries while learning what real life is about. I’m confident that he will continue down this path with confidence and clarity – and that your assessment of his fear of needles is spot on.

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