By now a few people in my life know that the situation with my sister’s leukemia has taken a not-so-great turn. She had begun her third round of chemotherapy from home, which we thought was a good sign, but then she was taken back to the emergency ward by ambulance with a very high fever that turned out to be pneumonia. At this moment, she is in a private room on some pretty potent pain killers and struggling through a tough time both mentally and physically.

Having walked this path before, I can tell you how difficult it is to know or predict how bad (or not) things are. I’ve been told that her condition is not good but not something to panic about. I’ve also been told that I need to get my butt to the hospital sooner rather than later if I want to spend time with my sister.

With my mother’s illness, I remember being called and told I needed to get to the hospital NOW because she could die any minute. Through a blur of tears I dressed and drove to see her one last time. It was a false alarm. She stabilized and was fine the next day. She lived for another two years after that. Cancer is tricksy.

A palliative care nurse gave me possibly the best words of wisdom where cancer is concerned: It’s a marathon not a sprint.

I’m going to book a plane ticket to the island to go visit my sister again, with the full knowledge that she may be just fine by the time I arrive. Or not fine at all. And I know that I may go through this again in a month, six months, a year from now, or not at all. This is one of those situations where it truly is better to be safe than sorry.

Cancer forces you to redefine “normal”. Only remission or death can end this new state. Until then, life is lived on tenterhooks. Uncertainty is king. Nothing changes and everything changes. Every day you wake up and go through your normal routine but you do so while playing the most twisted version of Russian roulette you can imagine. Maybe today you’ll get the best news in the world and the person you love will magically begin to recover or maybe today will be the day that you will have to carry on living without them.

As tough as it is for the family members or close friends of a patient, in some ways it’s much worse for their friends, co-workers, and extended family members. Death is simple–you say you’re sorry and offer condolences. This? This limbo? What are you supposed to say? How are you supposed to act? Does the person want you to be sympathetic or uplifting or to just act as if nothing has happened?

I can’t speak for anyone else but I can tell you what I want: I want you to do or say what you want.

That’s it.

If you feel sad for me and want to tell me so, please do. If you’re uncomfortable talking about me and my sister, then just talk about whatever we normally talk about (probably cats). If you want to ask me how my sister is doing, go ahead and ask. If I break down and cry at some point while I answer, don’t feel bad. Sad people cry sometimes. If you are worried about being too happy around me, perish the thought. Your happiness makes me happy. If you have good news, share it! I love good news. If you want to hug me, I will not say no unless I am holding a Fabergé egg and I’m worried about dropping or damaging it. If you want to discuss the proper BMI for surviving both chemotherapy and the zombie apocalypse, I am all ears. (Thank you, Andy).

There’s no need for tiptoeing gently around the subject with me, either. It’s an awful, messy, painful, frustrating, and confusing situation and pretending otherwise is a waste of everyone’s time. Yes, there is an undercurrent of sorrow running through my life now but there are only so many hours in a week that a person can actually be sad. It’s exhausting. The rest of the time I’m just the same old me–writing, watching funny cat videos, eating chocolate, making lame jokes, etc.

Kristene Perron on a pillow with kittens

Just another normal day

As I wrote about earlier, life really does go on.

I want to be profound and poetic here but cancer has, at least temporarily, stripped that ability from me. That’s also part of the new normal. Sometimes you just can’t dig deep enough to find the person you know you are.

If there’s any good thing that comes from cancer–and shockingly sometimes there are good things–it is that it forces us to realize that “normal” is an illusion, a construct, wishful thinking at best. Anything we love can be lost and our lives can be upended in a single day.

Love hard, laugh often, and say thanks for everything good in your life.

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