I haven’t written about cancer in a long time, except as an aside.

The cancer inhabiting me is controlled.

I found out the hard way that the word “remission” isn’t accurate for the kind of cancer I have.

Which basically means I have to sit here with this pending monster inside me.

It will come around every few years to ruin my life, as I’m not one of the subtypes that gets the 20 year remissions. Awesome.

But even if you throw in the daily cancer anxiety and unresolved emotions about treatment? It’s not the cancer that’s the big deal, incredibly enough.

It’s recovery.

With cancer, the way most people think of it, there are boundaries.

It’s either active or dormant.

it’s either cured or not.

The treatment works or it doesn’t.

It’s happening now or it’s over.

It’s a little more fluid with chronic cancers like the one I have, CLL. I’m still not used to the idea that the remission I celebrated isn’t a remission at all.

I still have symptoms but none bad enough to hit with chemo. I’m below the level chemo would be useful

But I still enjoy saying I “had” cancer, not have.

My lips enjoy these words. So fluid birders are fine. Kinda.

Yet even though the borders are a bit murky and transitive, they are still borders.

But recovery?

Man it’s a doozy. And the borders are more like general outer zones that may shift at any time.

When is Normal?

First, and I don’t know where I got this idea except maybe TV, you have the perception that when you’re a month clear of chemo, you’re going to start feeling normal again, bit by bit.

Or at least get back to the pre-cancer version of normal, as I was expecting as a spoonie/disabled person.

I’d read that recovery can take six months or more. I wasn’t ready for how much more.

I was diagnosed in January 2016.

I had my last major chemo appointment in September of the same year.

I have yet to feel anything like the person I was before the cancer.

I’m learning I may never feel that type of normal again.

It’s literally a form of torture.

As much as I hate uncontrolled change and chaos, I’m eventually, though reluctantly, adaptable.

I cope by finding things to like about the change.

This change though? I’m having a heck of a time adjusting.

It’s hard to explain to people how shaky the ground is when they think you’re clear of the main hurdles of cancer and treatment.

And it’s not just that the cancer has uncovered a new illness that may keep me from ever being able to work the way I did.

It’s the literal torture of not knowing what any given day will bring.

I though it was hard planning for life and business before when I was becoming disabled. There would be unexpected down time for pain and for fatigue.

I wish I could find the article I read by another blogger with chronic illness.

She or he pointed out that one of the psychological tricks that make torture so effective and horrible is that each day, the routine is varied.

A person being tortured never knows what the day will bring, what behavior they can rely onto bring relief.

An action that seemed to grant them clemency one day might subject them to terrible pain the next.

So yeah. Welcome to spoonie life.

Obviously not as bad as what some have endured. But the unrelenting, ever changing levels of pain and fatigue?

It follows the literal unpredictable pattern and pain of torture all the same.

Even this was something I used to be able to correct for. I used to be able to build from the rubble of however my life had been shaken or destroyed.

How do you rebuild when the rubble is actually quicksand?

In the old days, I managed by hiring help, often short-term or as needed, to do the grunt work while I focused on the strategic part that had the most impact on my clients.

I kept to a schedule. Highly recommended if you are a spoonie.Some of your life can proceed as planned via muscle memory charted to typical peak energy times.

When pain or fatigue strikes, you need to be able to pause everything, still serve your clientele, and of course, still get paid.

So Monday I set our goals for the week and divvied up the work load.

I did as much as I was able, which was usually enough to complete a couple of projects because I’d be fresh from two days off work.

Tuesday was monitoring and reporting, which I relied heavily on software to help me compile,

Wednesday?

Would be a full bedrest day- I got the best results from not working at all- the max was catching up on my daily research and reading,

Thursday both internal and client meetings.

Friday any light work I could do from bed.

With that, I could manage work for up to three clients. The schedule ensured I got enough rest.

The helpers ensured that everything urgent, but not needing my expertise, got done in a timely fashion.

And if I stuck to plans, when a flare was coming on I could often borrow a little energy from muscle memory and being on autopilot to get me through essentials.

If when I needed a rest day shifted, I simply swapped that days schedule with Wednesday or Friday.

If it was a remote meeting day I still had them but in a recliner, then immediately got back in bed.

Since my actual presence was only needed one day a week for teleconference s and video meetings, it meant I could work when I felt most well and drop everything to nap, rest or recover.

I could focus on getting things done at my peak energy times. If things were too much I could sleep, and do things later in the day.

Fetch is not happening.

Naturally I tried to fall back into that pattern.

For THIRTEEN months now I’ve been trying to get back into the groove.

I’m finding out I have to reconfigure my entire work life.

I literally don’t have enough daily stamina to blog every day.

I used to be able to sit at my laptop – or on flare-imminent days with my iPad and keyboard- and produce almost two thousand words in an hour.

Now I often have to rest at the end of every tweet.

Imagine having the words and inspiration to write, but having to pause after each paragraph, sometimes for longer than it took to write the paragraph.

How do you get into any type of flow?

Fibromyalgia and cancer both brought me brain fog.

If I don’t get enough rest, if I try to push myself, I get so foggy that I call the kids by the wrong names, can’t recall what objects are called, or make the kind of typos that spellcheck can’t catch.

The kind where they are real words, that just don’t belong in the sentence you created.

Several times I’ve looked back at tweets where I thought I had written a coherent tweet, only to find later that a few words here and there in the tweet are completely out of place.

This kind of thing is especially distressing when you’re known for your ability to convey concepts others find difficult, through creative examples and metaphor.

Our current resolution is rest. My pockets though.

To save money when my sister first returned from living overseas, she came to live with me.

To further pool our resources, we moved my retired mother in.

Then I got cancer.

Mom came out of retirement and she and my sister have been taking care of me ever since.

Which is the opposite of the arrangement we wanted to have.

I still worked though. Even through cancer, though part time and not nearly as much.

I kept my favorite client and subcontracted the rest to the partners and colleagues I was already working with at the time.

This is the first time I’ve had zero steady clients and no updated product line.

Littke to no money is coming in but I still have $1000 worth of bills every month I can’t do without, including my meds and until last Msrch, my insurance premium.

It’s hard to work but I’m doing my best.

Since January I’m lucky if I come up with a fourth of what I need.

My family is being really supportive, both of me and my doctor’s plan- which puts rest at the top of my list.

The theory is that I have not rested or consistently gotten a good night’s sleep since before the cancer diagnosis.

I worked part time while I had cancer, though some days I didn’t work at all.

The truth is I have not completely unplugged since 2012, and that was because I got hospitalized with pneumonia after my birthday trip.

The next time I had any form of extended relaxation was when we travelled to Mexico for my youngest brother’s destination wedding in 2017- a nice trip, but only four days.

Who am I, if I’m not a breadwinner?

After being known as a money machine, it’s difficult to cope with, to think of what my identity is if I can’t work, what my worth is, how I can live with not being what I view as productive each day.

Intellectually I know my worth goes well beyond this.

Emotionally, it’s quite another thing.

I tell myself that it’s okay to rely on others as others have relied on me in the past. I even know it has to be this way for me to heal and get back on my feet.

But it feels like I am slacking.

It’s strange to change my routine of getting up to read and work and then have breakfast, after so many years.

And the slightest financial worry in the house makes me feel guilty and upset.

People say “well if you can’t work, isn’t that what disability is for?”

If I still lived in Maryland, that might be somewhat true.

When I needed Medicaid, they were there for me.

I feel like if I needed more assistance from the state, the taxes I’ve been paying for years would be invested back in my recovery.

It varies from state to state. And on top of that?

Federal assistance isn’t automatic either, the way it is in some other countries.

We pay such high taxes to the government for them not to return us that money when we’re on hard times.

Why else do we need government?

To subsidize wealthy corporations?

What exactly are they doing for me?

Anyway, end tangent. The point is, there’s been a lot of trying to adjust my worldview.

And I don’t know what the answer is as my target moves every day.

But at least I can let other people know that this flux is normal.

And that there are ways to cope. Including accepting that your pre-cancer life may be lost. And if it?

Maybe that’s ok. In this moment, right now, you’re alive. Maybe you have to work full time instead of being an entrepreneur right away.

Maybe there is a hybrid life in-between you can adapt to some way.

And as soon as I figure out to articulate some of those ways?

I’ll be back with another update.

Well. Energy-depending.