It’s late, and I’m working on my column. My husband, Daniel, has just retired to bed, so I step away to perform my ritual “security sweep.”

I check the locks and the deadbolts on the doors. I turn on the security alarm, check the exterior flood lights, and turn off extraneous indoor lights. I think to myself, “How can he sleep like a rock behind an unlocked door? I can’t even type another word in my column, much less go to sleep!” 

I’m hard-wired that way; I’ve always felt the need to protect myself and my family from the elements.

As I return to my column, I can’t help but think about the one intruder that is always on my radar. It’s not a masked criminal or a thief; it’s not an escaped convict or a drug dealer. It’s multiple myeloma. And the only way for me to live well with multiple myeloma is to lock it out and not think about it until I must.

Multiple myeloma is a persistent intruder. If I leave the door cracked open just a bit, it will break in. Slipping through the light space like a flowing ribbon of darkness weaving its way into my thoughts – into our world, and into our happiness. If I let it, multiple myeloma will rob me of my peace, and so I lock it out.

I do my best to keep the myeloma door locked all the time. This can be difficult, because Daniel doesn’t need to keep it locked the way I do. He feels more comfortable with it open sometimes. He reads articles and wants to discuss them. There will be new drugs results published that he brings up, or commentary on the efficacy of stem cell transplants.

When this happens, I want to support him and express interest. I usually offer positive comments about the strides made since we first saw his myeloma specialist in 2012. I listen and share, but behind my con­versa­tional tone and pleasant expression, I am standing at the myeloma door, vigilant, looking for the slightest sign of forced entry, ready to fight it back before it can fill my thoughts with doubt and fear.

It’s not easy to be open on the outside and protected on the inside. I live both outside and inside the myeloma door, because I won’t lock my husband in here with me. He wouldn’t be happy in my world without multiple myeloma. He needs to be able to come and go from this mental space. He doesn’t react to this disease the same way I do. He lives with it differently than I do. Just like he can sleep with the house unlocked or drive into a panhandler-filled intersection with his windows rolled down, he invites myeloma into his head space where he can rationalize it, understand it, and deal with it better.

My reaction to multiple myeloma is different. It’s an emotional one. I can’t make sense of it by thinking about it, even though I’ve tried. I used to read all the articles and I tried to cope with it the way that Daniel does, but doing so just left the myeloma door too open for me.

Myeloma didn’t respect the boundaries I needed it to. Myeloma weaved its way into my thoughts such that I was no longer thinking about the clinical trial drug, for example, but rather how long those people had to live before the drug stopped working and they died. While I was happy to have another tool in the tool belt to use against this disease, my enthusiasm was tempered by the reality that it wasn’t a cure, and we don’t know how long it will be till there is one. This inevitably leads to the worry: Will they find a cure in time for Daniel?

So I needed to find a way to keep the myeloma door locked, but be in two places at once. Be outside the door when my husband wants to talk about it, or we have to go to the cancer center, for example, but not leave the door open so that it can come into the most sacred of spaces – my heart – where it can do the most damage.

When I’m on the other side of the myeloma door, I just try to keep “my thoughts,” my reactions, and any focus on me out of the equation. I do this because, if I open that door, if I let it in and make it about me or my feelings or my needs, then I know it will be that much tougher to close the door again, and it’s too tough to live with myeloma otherwise.

Other caretakers live with multiple myeloma differently. Some people invite myeloma in for tea, for others myeloma is a roommate, and for others it has been the unpardonable thief. Ultimately, we all have to find a way to cope. In the end, I know my role. As a caregiver, I’m not in the bed; I’m beside it. I’m not taking the therapy; I’m loving someone through it. This is not about me, though I am impacted by it.

I can’t keep multiple myeloma out forever. One day I will open this door. Hopefully, I will open it to the light of a cure, where myeloma is no longer the intruder. But even if it isn’t, I will have the strength to open it because love is stronger than myeloma, and that’s something that we have in spades.