April 25, 2014

This Is Where the Real Work Begins. ~ Bekah Jordan

Vintage Hospital

And so the real work begins.

Monday brought the news that we will not be continuing with the current chemo regiment (the monthly five-day hook-up with my BFF Decitabine, whom I will hereafter refer to as BigDaddy), that the plan has shifted, and we’re starting it in a week.

The nurse sort of mentioned this in passing to me: “Heard about the great news—the donor—so obviously you know the plan has now changed; we’ll be skipping BigDaddy* this week and starting induction chemo on Monday. How are you?” (*she didn’t actually say BigDaddy)

Welcome to the comedy show where nothing’s made up and the points all matter. My eyes sort of started crying, suddenly, without my consent—as I told her that no, I did not know that the plan had changed and no, it was not obvious. I asked her to repeat it again, to explain exactly what the plan is now.

The News. So, a Stem Cell Transplant (STC) is the only treatment that can cure the type of leukemia that I have. The best place to find a donor is usually in a closely-related person, like a sibling—but unfortunately neither of my sisters was a match for me.

When that is the case, doctors must turn to the bone marrow registry to find someone who matches my immune system DNA. I got the glory call just a few days ago. All I know is, a 35-year-old man in shining armor is going to save my life.

Since they found a stem cell donor so quickly (it took under two months—most patients wait at least three months), the game plan has now shifted.

My most recent bone marrow biopsy showed stability and little bit of improvement—but not enough as prep for transplant. The original plan was to continue on BigD until a donor was found, and hopefully by then I would be in remission (i.e. ready for transplant). Turns out BigD hasn’t been doing the job quite as well as they’d hoped, and rather than continue and wait to see if things improve, it’s better to just pull out the stops and go for it. This is good news. We’re moving closer to getting this thing behind us.

It’s just happening faster than I was originally preparing for.

The New Plan: Phase One. Next Monday I will begin induction chemo—this is to rid my body of all visible cancer cells (also known as remission). It’s….well, it’s rough stuff. The first week is seven days of 24-hour chemo drip, along with an additional two-hour daily IV push. a.k.a. intravenous cocktails for a week straight.

Are you hearing this?

Then I’ll be in recovery post-induction for around six to eight weeks (my immune system will be very weak and risk of infection is high). After that, I’ll have a week off to go home. Then I’ll go back to the hospital for a week of pre-transplant chemo—ostensibly more intense than its close cousin, induction chemo. Basically we’re sending in troops to search and destroy the immune system that took an evil turn (…Hal?).

And then I get a day off. When my transplant doctor explained all of this to me he said, “…and then you’ll get a day off—” after which I chimed in a somewhat lackluster “to party!” while he said something else that sounded similar. “I’m sorry, what?” “To puke your brains out.”

After that glorious day off, we hang a comparatively anticlimactic IV bag of stem cells that are just, you know, gonna save my sorry puking ass. It’s the infantry, come to clean up whatever old immune system is left after the chemo soldiers. They call this my re-birthday.

Then the waiting game begins as the two sets of DNA duke it out (Hal, give up the ghost). I’ll be in the hospital under scrutiny/immuno-suppressants until my blood counts return and they deem I am fit to leave; approximately another four to six weeks. Then of course I climb aboard Phase Two: the twelve-month quarantine for recovery and immune-system growth. I am soon to embark on the craziest escapade of my life so far.

Perhaps never to be surpassed in the crazy.

Operation Soak It All Up. So here I am, sitting in a wooden booth at my favorite bakery, savoring the last taste of sugar from my walnut sticky bun and coffee. It’s really hard to not think that this is my last week of freedom. My life will be changed forever once we start this thing. I mean, it’s already been altered incredibly—but now the real thing begins.

The real, tough, work.

I really do consider myself lucky, though. Some people go in for routine blood work and end up in induction chemo that very day. I’ve had a few months to warm up to the idea of cancer (…still lukewarm), and now I have this week to savor the deliciousness of my home and the outdoors and all the places I won’t be able to go for a while.

I’m trying to make it full of good things, though I have found myself the past two days very unmotivated. I want to be filling my time actively, experiencing everything.

But I cannot deny, there is fear in me.

I have a hard time explaining how I feel to people when they ask. I guess I don’t even know how I feel. I think about death a lot. Like, a lot. I desperately want to enjoy and love my life and experience everything and live every day, and not care about what’s coming.

But I find myself unmotivated, slow—like I don’t want to get involved if I’m just going to die. It’s a protection thing maybe. I’m trying to protect myself as well as other people from my own death. But it’s so casual the way I think and talk about death these days. And that too is depressing, the informal nature of it all.

But that’s the way it is. Death happens. And it happens. And everyone else gets to—or has to—move on, and you miss out on what would have been the rest of your life.

And I’m afraid of dying. But even more so: I’m sad about dying.

I don’t want to die, because I want to love and experience things and people.

SONY DSCI’m not done, damn it. And it seems unfair that death is staring me in the face right now, this old man with soft grey skin and a forlorn expression, wagging a long finger. It’s close. It feels so close. And I hate that. I hate that it’s changing me, and I don’t think it’s for the better. I don’t like it. I don’t like myself right now.

My sister and I talked about the inevitable evolution of this feeling. Of course the mental stress of the past few months is completely unprecedented. I try to imagine that I’m not me, but rather I am listening to someone else tell me the situation.

I say to this person, of course, this is inevitable, this is normal, this is an expected reaction to all that’s happening around you, with this lifestyle change forced upon you, with death hovering so close by. Of course it makes sense that simple decisions feel out of reach.

Imagining your own death every day is not far-fetched. You are a real person, with emotions and impressionable moods and physical limitations. All of those things are being strained right now, and you are not in a healthy state to be fully yourself.

Perhaps that makes it somewhat more tolerable. But all it really does is acknowledge the inevitability of this drab feeling, and it doesn’t do much in the alleviating department. It doesn’t make it easier to be with me as I struggle to keep my energy going, or try not to slip into my head, mulling over and about my impending mortality or the possibility that I may die very soon.

It makes it hard to be fully present.

It’s not this way all the time. There are glimpses. I see beauty. I have indeed laughed until I’ve cried and maybe even peed a little just in this past week. Some moments with certain people have freed me. But the amount of time spent feeling this way has drastically increased over the past few weeks. And I’ve watched myself become self-conscious and moody, quiet, darker, heavier, sadder.

Perhaps I’m prolonging this by writing it all down; perhaps I am making it worse. But I can’t deny it, I feel different. I’m trying to go through this—and live my life—by the words of Czeslaw Milosz: to begin where I am. To allow myself to be exactly where I am, no moods or thoughts excluded. To let everything happen to you: beauty and terror.

This thing was never going to be a joyride. I knew that.

I wish I could bebop and dance my way through this the whole way, but sadness has its place too. As does terror. It’s a real experience, part of the Truth, and I guess some times are spent living there.

I just hope that in acknowledging them, they too come into the light and can be made free. And the world will again seem to me a beautiful and vibrant place. This is the real work.

So I am committing things to memory.

The sun on my back and arms as I walk to the laundromat. The smell of this bakery.

That elderly woman’s platinum pink hair.

Sitting and writing in a public place.

The Bask Leukemia Bash Fundraiser on Saturday. Hannah’s song that is playing in my head. The painted chairs and upholstery and cushions, the Persian rugs and tapestries, the eclectic lamps and books and tables.

Shel Silverstein. Eric being buried in sand, carrot cake, and climbing mountains.

Bracing for the fall, the universe dividing. Rilke. Goodnight mush. A floppy crown, standing on chairs, a tiny narrator clearing her throat.

The moon.

Laughing. Crying. Covering my face.

Listening. Loving.


It may be that when we no longer know what to


we have come to our real work,

and that when we no longer know which way to


we have come to our real journey.

The mind that is not baffled is not employed,

The impeded stream is the one that sings.

~ Wendell Berry, “The Real Work” from Standing by Words

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Photo: Wikimedia Commons / Unsplash

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