Love, Fear, Courage and Faith - What Cancer Does to a Family

I never intended this to become a cancer blog, any more than I intended it to become a recovery blog when I first started it to be a jewelry blog four years ago.

It won't always be a cancer blog, but cancer - like active alcoholism - is a totally absorbing, all consuming thing.  Everything in my world - literally everything - revolves around having cancer.  The kids' schedules, my husband's schedule, my schedule - nothing can be set in stone until my treatment logistics are pinned down.

And that's just the practical part of having cancer.

The emotional part is the real all consuming thing - for all of us.  The kids having to make adjustments to my weakened state, learning to be more self-sufficient, being brave about new sitters and going on play dates at school friends' houses they have never been to before.  Getting rides from Mommy friends of mine that they know, but haven't driven with before.  Any one of these things would have been a big deal Before Cancer.   After Cancer they are learning to adjust on the fly, because they don't really have a choice.  I am so proud of both of them, bravely extending their horizons, stepping almost daily outside of their comfort zones, managing their fear of my illness along with all these new things.

My husband is working so hard - both at his job and here at home - he is parenting the kids most of the time, and being a care-taker for me, all while managing the regular day-to-day business of full time job.   He amazes me every day at the patience he shows the kids, even when I know he is stretched to his limits.  He asks me over and over, what do you need?  What can I get you?   He is a strong shoulder for me to cry on when I need to, even as he tucks his own worries away he strokes my back and tells me everything will be okay. He looks out for ways to make my life easier - a laptop table next to my bed, cleaning out cabinets to make things more accessible, finding just the right thing to cheer me up.

Cancer impacts the whole family, on every level.

I struggle to come up with things to write about that aren't cancer related -- but those thing don't exist in my world at the moment.  My thoughts are consumed with managing symptoms, pain, sleep, medications and trying to keep fear at a healthy arms' length away.

I have been stripped down, emotionally, to an almost child-like state.

I think back to where I was a year ago - preparing to fly to the Blissdom Conference in Nashville, meet up with friends, speak on a panel, network and try to spread the word about Crying Out Now.  I had recently met my weight loss goal of 65 lbs, and was generally feeling on top of the world.

These days there is no room for dreams, for ego, for thinking about building my business or networking.  Those days will come again, I believe, but at the moment they feel long gone.

These days it is all about "what did you eat today, hon? Anything?"  "How is the pain?" "When did you last take such-and-such medicine?"

And then my least favorite: "Have you, you know, gone today yet?" (like with children, bowel movements, or lack thereof, are a hot topic.  Sorry if that is over sharing, but the doctors are concerned and I'm concerned, so the whole family is involved in finding foods that will help Momma GO.)

So maybe I'm more like a potty-training toddler.

My thoughts are so centered around me, not in an egotistical way at all, it's just there isn't room for anything else.  I go into the kids' bedrooms at night to kiss their foreheads while they sleep and my heart aches; there is so much I don't know about their day-to-day life right now.  Their worlds are held safely in the hands of my Mom, my friends, and sitters.

I'm still grappling with fear, too, although it is so much better than it was.  Stripping my life down to its barest essentials meant that a lot of my former day-to-day fears were stripped away, too. They almost make me laugh, the things that I worried about Before Cancer. Things like not measuring up, trying to fit in, neuroses about why so-and-so seems upset with me, or so-and-so hasn't called in while.  Those petty concerns about keeping up with the other Moms, being successful in business and raising kids - doing it all, and doing it all well - they seem very, very far away.

These days I live in a nearly constant state of deprivation.

I can't eat, I can't drive anymore, I can't talk easily on the phone (or at all, because of the pain), I don't have the energy to do much of anything.  Deprivation does funny things to your mind. First it drove me nearly insane, as I struggled against it. I fantasized about my old life: about exercising, about biting into a cheeseburger, about going to the grocery store and piling food into my cart, about meeting up with friends for breakfast, or a night out.

Slowly, slowly, I am adjusting to my new normal, and now I don't think much about those things anymore. There isn't any point; it only brings misery.  I have tucked myself into my little nest of a world, and I'm waiting it out.  I know there are things - important life lessons - I will learn through this experience, especially coming on the heels of another tough life change: losing my Dad so suddenly in June.  I had barely begun to process his death when the cancer came along.  I've decided to put all the Major Life Lessons on a shelf, though, for a while. I don't have to figure this all out now. I just have to put one foot in front of the other, keep my heart and mind as open as I can, and get from one end of the day to the other.

And then I have to get up and do it again the next day.  But I'll think about that tomorrow.

And, of course, my "what if I get cancer someday" obsession -- a fear I carried with me my whole life like a nasty, heavy piece of baggage -- now that it's part of my daily world, it isn't nearly as scary as I imagined as I cultivated my fear-fueled obsession with disease.  Because we adapt, we do, in astonishing ways.

There is an issue with the lump on my neck; the one that holds the tumor inside. Last week it got bigger, and then a LOT bigger, and the doctors and nurses tried to downplay it, but I speak fluent non-verbal communication among doctors and nurses now and I knew they were concerned.  There was talk of doing a CT Scan to see what is up, but that wouldn't change the treatment protocol at all, so it was decided to stay the course.  And the lump is getting smaller again, slowly.  Hopefully it will continue in this direction.  The doctor yesterday basically (again, in doctor-speak) prepared me for the idea that I will very likely need surgery to remove the lump after chemo and radiation are done.

"And if we find there are active cancer cells in the lump after we remove it?" I asked.  I am not afraid of answers anymore. I do not stick my head in the sand.  I want to know. Sometimes I don't even recognize myself when I hear myself speak to doctors

"Well, then we celebrate that we took it out and didn't wait to see if it would shrink," was his guarded reply.

I decided not to press it, because I know he doesn't have a crystal ball, he doesn't know why tumors behave the way they do.   He did tell me he had one other case like this, where the tumor just wouldn't shrink, but when they removed it after treatment was done it was just "rubble" - no cancer.

Steve heard "rubble"; I heard "only one other case."   So the fear thing is a work in progress, but I've come a long way.

Tomorrow (thankfully) the feeding tube goes in - I don't know if it will be overnight procedure or not, but they will have to put me under general anesthesia to place it in.  My throat is too far gone for me to be awake, even under conscious sedation.

I am hoping the feeding tube helps me get some strength back - I'm lucky if I get 800 calories (all liquids like Ensure or Carnation Instant Breakfast) into me during the day.  I should be having, in my compromised state, closer to 1800 calories.  So I hope the tube helps with the healing and the energy.

The kids are calling it my "belly button straw", which makes me laugh even as I dread having one at all.

This print can be found in the Etsy shop RococcoLA
I wasn't paid or compensated in any way to promote it. I just love it.

Thank you for being here, reading.  Your comments and support help me SO MUCH.  Being able to write through this has been healing for me.  As hard as they are, I want to remember these cancer days, too, because there are so many moments of breathless beauty and bravery, and I want to capture those, along with the pain and the fear.

It's bringing my family closer, even as I feel like I'm drifting away. Writing helps me not lose sight of how my kids, my husband, my Mom, and my friends - OH my friends - are carrying me when I don't always feel like carrying myself.

So thank you.  Thank you so very much.