Wednesday’s Wonder Woman: Elliana Meredith
So, last weekend the thought occurred to me that this ‘prolactinoma’ they’re wondering if I have – which would be evidenced by high prolactin levels – could actually be something else. Something very different. Something very happy.
There was a simple way to find out.
I took a test.
And, for a moment, it looked positive. Then, I noticed something else.
Must have been a false positive. Because I was definitely NOT pregnant.
But when I told all this to David, I paused in between the false positive and the NOT pregnant part. His face contorted in a mixture of horror and humor.
‘Well, our babies have never really been, um… planned.’ he said.
Noelle was a pleasant surprise. Elliana was a whirlwind of, oh, this again, already?
And when I look back on it, Elliana may have been the trigger that made me really sick.
The kind of leukemia I have is caused by a chromosome alteration. Usually the tips of chromosomes 9 and 22 break off and switch places, forming the ‘philadelphia’ (CML-causing) chromosome. But I was different. I had three different chromosomes break and rearrange themselves. And part of those rearranged chromosomes were inverted, as in, where it should have been, say, part 14 to 22, there was part 14, then 22, 21, 20… and so on.
The geneticist believes this inversion may be congenital. As in, I always had it. It made my chromosomes weaker. It set the cancer in motion. All it needed was a catalyst.
Elliana may have been that catalyst.
I won’t give you the details that tell me why I think that. Suffice it to say I was pretty sick by the time she was eight months old.
The end of my genetics report states, ‘these findings may have reproductive consequences.’ David said, ‘well, we’ve reproduced already. Now what?’
My oncologist told me they could do further tests if I wanted. They would be expensive, long, and of course, would tell us things that could radically affect the rest of our lives.
‘Do you want to know?’ He asked.
As I’m sure many of you can tell, I’m somewhat of a worrier. In certain settings – work, for example – I try to mask that a bit. My patients sure don’t need to know when I’m worried about them. So, as a worrier, I’m sometimes compulsive about knowing.
In the early weeks of chemo, my oncologist’s office would fax my bloodwork to me. They wanted me to know how I was doing, they said. About six weeks in, I was going crazy. The slightest variation in kidney function or liver enzymes would set me off. A friend of mine said to my mom, ‘Sometimes, I wish she didn’t know as much as she did.’
She was right. I knew too much, especially then. And, it was making me lose my mind.
So I called the office and said, ‘you know what? maybe just call me when Dr. Noble is concerned about something.’
We don’t always need to know.
Like about my girls, for example. I don’t need to know if my inversion was congenital. I don’t need to know if they have it. I don’t need to worry every time they get a bruise or cut if this will be the thing that triggers the switch.
They don’t need to know that either.
Like children of fathers with Huntingdon’s disease – not all of them want to know if they’re a carrier. They might live differently, and not in a good way, in a panicked way.
So, I haven’t heard from any of my doctors about test results yet, except to say its for sure not your thyroid. The prolactin test should have been back by now, but my family doctor has a philosophy. He tells me every time I leave his office: no news is good news. He doesn’t call me unless I need to know.
He hasn’t called.
I could call his office, I could insist on knowing. But maybe I should just sit and wait. Maybe I don’t need to know for sure right now.
I trust my doctor, after all. If there was something he wanted to do something about, if the prolactin level was high – high enough to refer me to an endocrinologist – I’d know.
And I don’t know. And, it’s kind of amazing.
Those of you with chronic illnesses – or chronic stuff you deal with – may understand this. Occasionally you have to take breaks from your stuff. Like, mentally, you have to forget you’re sick. Or, forget you’re the parent of a child with extra challenges. Or, forget how much debt you’re in. Or… I could go on.
For an hour or two, or even just for five minutes, sometimes I pretend I’m completely healthy, without a care in the world. I laugh, I joke, I escape. There are certain things David ‘prescribes’ for me when I need such an escape: an extremely good book, a bike ride, or Bones reruns (don’t make me explain that, I can’t; that show is magic. I always feel better after. Yup, I’m a geek).
But one thing I often forget to prescribe myself is a dose of Elliana.
This girl – complete in yellow rain boots, today – just marches to her own drum. She is giggly, sweet, charming, and downright hilarious. She doesn’t let anyone else decide things for her.
She is also extremely cuddly. I may, in fact, be carrying her on my hip until Kindergarten, or until my arms fall out.
The latter will likely happen first.
The moment I first found out I was sick, I kept thinking, poor Elliana. More than Noelle, she was a baby that was attached to me, in every way. I had to wean her in a matter of hours so I could start chemo. I kept thinking, this isn’t right.
Elliana didn’t take too well to this idea at first, but eventually she adapted. And she solved it by asking me to hold her more.
I did. I didn’t have much else to do at the time.
I now see exactly why she was my extra-cuddly baby. Sometimes its her that finds me on those really bleak moments. She’s often the first to take my hand, crawl up on my lap, or ask for a hug.
So, even though what happened to me may have been at least an indirect result of her arrival, she was exactly what I needed to cope with all of it.
They say we are never given more than we can handle.
I don’t always believe that.
But I do believe that we are not left alone to handle it.
I’m not always the best at letting people in when I need to. But I’m learning. Even when they hurt you – and they do – you learn which ones you can trust. I know you know what I mean.
So, all I have to say to you today is:
Find those people. And hang on.
And be grateful for your Ellianas.