Maintenance Is Still Hard



It should be easier than this.

We should be used to it by now.

We should have found our groove.

This should all be routine.

But it’s NOT easier. We’re NOT used to it. We haven’t found a groove and our routine is centered around getting through the day somewhat in tact.

We often feel like failures (as well as whiners). Our house is a disaster ALL THE TIME. We are so very tired, even after a full night’s sleep. Quality of sleep, no matter how long, has degraded over time. It will continue to do so – we still have two years of cancer treatments to get through. Not to mention that as Jack grows, the chemo dosages increase. And while the increase in volume is proportionate, side effects may not be.

Our ability to focus is pretty much shot. This makes things like work and math – and paying bills – harder. Yet it all has to be done. There are no exceptions.

We haven’t heard many people talk about this stage in treatment. We’ve been feeling pretty alone, not to mention powerless to change our circumstances. And after experiencing a year and a half of this, there is no indication that those next two years are going to get any easier. It’s just more of the same and as time passes, it wears on us more and more.

We went to Camp Okizu this past weekend and it helped. We felt less alone. We met other parents who also feel like it’s gotten harder instead of easier. We heard our fears of relapse echoed from other parents whose children have had fairly straight-forward cases. We weren’t the only ones waiting for the other shoe to drop.

In other words, it’s not that we have a flair for the dramatic – this is just part of the process.

A weight was lifted off of us for two days. We didn’t struggle to get out of bed and face the day. Jack happily did his homework while we rested. There were no bedtime struggles. Everything just went smoothly because we weren’t trying to fit cancer and its treatment into our regular life – we were able to go to a place where life has been adjusted to accommodate these challenges. That’s as close to a break from cancer as we can get!

We’re back home now and I’m feeling more at peace than before our trip. The same struggles are still present, but my state of mind has improved. I now carry with me the experience of meeting others who face the same things I do and the knowledge that my feelings and reactions are in the normal range. Somehow, it helps.

With this bit of calm and clarity, I can describe better why Maintenance is harder than the previous two phases of treatment. See, we were living a full life before cancer came along. And in order to deal with the curve balls cancer has sent flying at us, we’ve given pieces of normal life up in order to focus on dealing with cancer. Some people take big chunks out – quit their jobs, go on a leave of absence, withdraw completely from their social circles. In my case, I’ve taken little chunks out of every part of my life. I’ve pulled back incrementally at work, at home, and socially. This affords me the benefit of continuing to do most of the things I did before Jack got sick, BUT the downside is that it feels like cancer is affecting every part of my life. And because it impacts everything, I am not doing anything 100%.

Further, Maintenance took what had been a concentrated (intense) challenge and spread it out. Instead of cancer treatment impacting our lives once or twice a week in a big way, it’s impacting our lives every day. There is no downtime or ramp-up time between treatments – just a bunch of pills. Oh, and school now, too.

There’s also a bit of the “are we there yet?” syndrome going on. You know how the last hour of a long flight or car trip is the worst? Suddenly you just have to get out of that tiny space! It’s gotten too hot, too stuffy, too noisy, and your patience has completely worn thin.

That torturous hour is just what Maintenance feels like. And it’s not the kids asking “are we there yet?” repeatedly – it’s everyone else…

Is the cancer gone yet?

Is treatment done yet?

Is he cured yet?

Can we move onto something else now?

I wish we could pull this car over but we just have to keep driving.

3 thoughts on “Maintenance Is Still Hard”

  1. I honestly don’t know when it gets better either. We are 5 1/2 months out of maintenance and I still worry all of the time. I’ve learned to try to live as normally as possible, to be positive, and to eat chocolate. It’s a hard road to go down, but I constantly remind myself it could be worse. My daughter could have passed away and she’s still here. I focus on that. And the future. Hugs to you.

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