Control, Defiance, and Joy

I meant to blog on Friday.

But then I got a phone call – from my oncologist’s office.

Yeah, those usually aren’t too fun. Oncologists are – unfortunately – busy people. No news is good news, they say. And its true. If they’re calling you, then, well, something’s up.

Or down, as the case may be.

This time, there was something down. I blogged on Wednesday about having microcytic anemia (low hemoglobin due to small red blood cells). I’d had a Ferritin level blood test (iron levels) done on Tuesday, to see if the low hemoglobin was due to low iron. If it wasn’t, then we had to consider that I might be sicker than we had thought.

But, it was low. 6, to be precise. Normal is 20-100, so yes, I’m a bit iron-deficient.

Good news, right? Because then I can just take iron supplements to correct the problem.

Or, maybe not.

See, we’re still not sure why I’m losing iron. Most women in my age group have low iron due to heavy … yup, you guessed it. But considering my history, my symptoms, and the bloodwork, there’s a slight possibility  that I may have a very rare side effect of my chemotherapy drug, Sprycel: pulmonary hypertension.

That’s high blood pressure in the veins going from your lungs to your heart.

Basically, it causes heart failure.

And, the best news in all of this, is, of course, if I do have this very rare condition, it’s not technically curable.

All they can do for me – worst case scenario – is use medication and procedures to prolong the inevitable.

Yes, that’s such a bright thought, isn’t it?

We’d just gotten to a point when I thought I might be able to breathe with this thing. I learned from it, I shared what I learned, and maybe now that I’d gotten my miracle I could concentrate on my kids and living the rest of my life with purpose.

To have to worry about something potentially even worse, all due to the thing that is supposed to be making me better, was not what I’d expected. Not at all.

The good news is that everything I’m experiencing now could all be due to hypothyroidism. I hope to get a blood test done in the next couple of days, and if that’s what my problem is, it is very, very correctable. Hypothyroidism is best case scenario. But, like I’ve said before, once you’ve had the ‘worst case’ once, you ‘go there’ faster.

We have this amazing group of people that we share dinner with once or twice a month. They asked me tonight, are you finding yourself ‘going there’?

Yes, I definitely am. The worry, the fear, almost flattens me at times.

Two years before pancreatic cancer claimed his life, my dad had heart failure. I remember how he looked. I remember how his life was never the same afterwards. I remember how sick he was.

And I think about how that could be me, just, thirty years younger.

And sometimes I wonder, do we get punished for things beyond our control? When bad things happen, should we look at ourselves, and asked if we’ve deserved it?

If I was talking about someone else, I’d instantly say no. Why would suffering be used as punishment? I know there are consequences for our actions, but I don’t want to believe in a world where I have to hold my breath, hoping I don’t ever mess up, and when I do, wonder what calamity will befall me because I wasn’t perfect.

That’s a judgmental, ugly, toxic way to live.

But I’m harder on myself than I am on others.

So, instead of blogging, I cleaned my house on Friday. I did the dishes, I vacuumed, I scrubbed the floors, I put everything in its place. When I was done, David asked if the Queen was coming to visit.

I said, no, but this way, if I die tonight, at least you’ll wake up to a clean house. 

And we laughed. Because we both knew what was really going on. I needed to control something. I wonder, how many of us do that? When there is a storm inside, do we try to make everything perfect on the outside? Is this why we care so much about our houses being perfect, our skin being perfect, our hair, clothes, makeup, tans, and eyebrows being perfect?

If everything looks okay, then it must be okay, right?

The girls were in bed. The house was clean. David and I sat down to take mental videos of how peaceful everything was. Because it was. There was something about having everything in its place on the outside that let me breathe. It seemed quieter, somehow. There was less noise in my head.

If only we could do the same with our circumstances.

I think the most controlling of us feel deeply out of control on some very big issue. The most invasive and judgmental of us likely judge ourselves worse than anyone else.

And the most peaceful of us realize all of our junk and are somehow comfortable with it.

I read this book last week about a woman with early-onset Alzheimers: Still Alice. I’m sure many of you have heard of it. Lisa Genova, an expert on treating Alzheimer’s, chronicles her character’s descent into dementia from the patient’s perspective. She writes of a woman used to being so smart and so in control, who suddenly felt desperately dependent and out of control.

And, she started to live.

A couple of days after I read that book, I discovered (okay, I was listening to Beth Moore and she said 😉 that the Greek word for rejoicing  is the verbal derivative of the Greek word for joy. It means a continuous, defiant, nevertheless! A, ‘I may be going through (@*#$^ right now, but! I choose joy.’

Good grief, that choice takes courage. You Insanity workout people, you know when Shaun T. yells at you to ‘dig deeper!’ because ‘you can frickin’ do it!’ ?

Yes, that’s what choosing joy requires.

I think I need a ‘choose joy’ trainer. You know, one that yells at me when I want to give up. It’s like doing ‘joy pushups’: You can frickin’ do it! You can be joyful even when this stinks!

I’ve never really been one to conform to things. I have this rebel inside me that loves to defy things that other people think I should or should not do. Now, it’s time to put that defiance to use.

It’s time for one, giant, nevertheless.

Every day.

I won’t know my prognosis for another six weeks or so – I can’t get an echocardiogram until then, unless of course, I have a lot of heart symptoms between now at then – but if it turns out I do have hypothyroidism (which could be causing all of the symptoms right now), I can start working on that very soon. We could have very good news, soon.

Or, not.

But, nevertheless…

I don’t know if any of you needed to hear this today, but I needed to tell you. You may feel out of control. You may feel overwhelmed. But there are roads to joy, somewhere. I promise. I’ve already found a few.

Just, don’t try to find them alone.

I drive myself to the worst possible scenario every single time when I’m alone.

Surround yourself with safe, candid, loving people. They will help you find your road to joy.

This weekend, my safe, candid, and loving people – family and friends who make this road so much easier (you know who you are) have done that – once again – for me.

Thanks, guys.

With you, I can say that giant, powerful, nevertheless.