Somewhere, But Nowhere I Know

Thanks John Vars for the pic.

This post is going to be a mess … suitably as I’m in a bit of a mess. I’m finding living with cancer, versus fighting it, is trickier than I thought. I thought that since I recovered so quickly from a death spiral to being up and about that I’d continue on to achieve a full recovery at the same rate. But I’m still bouncing around at about the same state of recovery as I was in mid-August. An important reality is that my treatment doesn’t kill cancer or put it in a state of remission, it just does an excellent job of holding it a bay. So I’m still walking around with lumps that would like to kill me if it got the chance again, but are all shrinking and I guess my body is more of a battlefield than I give it credit for. I’ve heard this described as the survivorship period. Where is this?

Everything has happened to me so quickly, just 160 days since my first diagnosis, that being in the same state for 45 days feels very confusing. Why aren’t I getting better weekly? Why do I feel great some days and lousy others?Why do I need a nap after sleeping 10 hours? There are straightforward explanations for all these questions and all my doctors are so happy with my progress they barely feel a need to address my current state. Fatigue I’ve been told is the most common challenge for the recovering cancer patient, but I still wonder why I can’t shake it. Parts of my body are ready for exercise and activity, while others need days to recover from it.

Everyone tells me this is normal and I need to listen to my body. And I do. But my brain is BORED. My brain doesn’t know why muscles aren’t responding or why we sleep for 12 hours. Since I’m no longer fearful of dying, I don’t know how to accept a bad day and watch TV without feeling like a waste. I don’t know how to fail at being able to pick up my daughter from school, something I tell people I love to do now that I have the time. I don’t know how to think about cancer without feeling the horror of it. I don’t know how to accept an unknown future while having accepted there is no such thing as a return to full normalcy. I don’t know why I can’t always remember to take my pills night and day. (Withdrawal pains is a lousy self-induced wound.) I don’t know how to feel like I’m just letting my days slide by. I don’t know how to be a good enough husband to my wife right now. I don’t know how to say all this without sounding like an ungrateful head case. I don’t know how to be vulnerable enough to say this and not worry people will think I’ve become damaged goods. I don’t know how to do any of this. At least as a dying patient I could accept my job was to do everything they said even though it was okay that I’d often fail at it. Now I feel like this should be the easy part and I don’t get why I’m stumbling through it.

Now my job is get back to being me without getting to be me again. Now my job is to learn how to cross this unknown expanse. Now my job is to relearn that it’s okay for days to pass into weeks into months without having to have a plan. Now my job is to relearn how to be a great husband (fortunately being a father to a young one is so basically human I haven’t forgot). Now my job is to accept I’m in another period of challenge that also has no known completion date. Now my job is to accept this is all part of the process and will be forgotten when I’m in a better place.

It’s weird how the purpose I felt when at the mercy of cancer is gone now. I wasn’t in control when the cancer was winning, but the cancer was in control, and I could respect that. Now I’m still not in control, and I’m somewhere, but I don’t know where and it some existential way it feels worse.

But, really, mostly, I’m so profoundly thrilled to be alive and with my family and friends that none of the above even matters, it’s just mental whining that will be quickly forgotten as I progress as my doctors expect.

See, I told you this post would be a mess.

Ted Rheingold found out he had stage four carcinoma April 20, 2016 and has been writing about it under “Season of the Witch”. You can follow him on twitter @tedr.