It was a hot, sunny day. My husband Daniel had spent most of it clearing entrenched, obstinate English ivy from our fence. He enjoys yard work and the exercise was good for him, so I left him to it. Later on that night, a red, blistery rash appeared all over his hands, arms, neck, and legs. It would seem that some of the vines were mixed with poison ivy.

Taking the advice of a physician assistant, Daniel applied copious amounts of Zanfel and Caladryl until the rash was under control. This helped abate the itching and the burning that were initially unpleasant. The blisters are mostly gone now, but the raised, angry marks remain – shouting their warning from a plague-like megaphone, “An unwelcome visitor was here!”

Poison ivy has definitely left its mark.

Aside from looking awful, Daniel said it wasn’t too bad. After the first couple of days, he didn’t really itch or feel the rash on his body. In fact, he said that he wouldn’t know it was there if he couldn’t see it. Much like the vines themselves, he never knew that he was spreading the dangerous oil on his body as he tore out limbs and stuffed them in trash bags.

The unseen enemy. I couldn’t help but think about multiple myeloma. In so many ways, Daniel’s smoldering myeloma is like this poison ivy rash, something living on his mind and in his bones, but undetectable out there to everyone else. Like the dark red marks lining his arms, smoldering myeloma is something that he can’t feel the actual presence of – only its residual impact.

Wouldn’t it be easier, I thought, if myeloma's progression was forecasted with some rash that would warn us before his bones developed lesions or his kidneys felt myeloma’s sting?

For those who are not yet in treatment and not showing traditional "CRAB" symptoms, so much of treating this disease is about timing. Knowing who to treat and when, based upon your likelihood of progressing to active myeloma. Not rushing to treat too soon, lest you bring on unwanted side effects and become resistant or refractory to available treatments. Not waiting too long to treat, lest you suffer from unnecessary organ damage.

Many patients present with symptomatic myeloma at the time of their diagnosis. They have little myeloma history or other personal data points, so their treatment decisions are based on treatment guidelines and clinical trial data.

Thankfully, we have four years of personal data for Dan to turn to when making decisions with his specialist. Knowing there are outliers everywhere, we do our best to proceed cautiously, ask good questions, and work with the specialist to stay on top of things.

But, for me, the nagging question remains. How about the timing? Are we waiting too long? Have we waited long enough? How soon is “now” and how will we know that the time and treatment protocol is right for Daniel?

It’s been four years and I’m still struggling with that one.

At the end of the day, it comes down to trust. You must trust the specialist – who is unquestionably more knowledgeable about myeloma than you are – and trust that he or she is recommending the right course of treatment (or no treatment, as the case may be) for you or your loved one.

This is hard for me. It’s not that I don’t think his specialist is top-notch. Believe me, I think she is great. It’s not that we’ve had bad experiences with his research facility. We haven’t.

As the wife, I just feel like I should be doing something. Like a rash that must run its course, I look at Dan and know that his smoldering multiple myeloma is taking us on a journey over which I have no control. Daniel is not a patient to me. He is my husband – my better half and my whole world, and for four years I have just “trusted.”

It’s funny, since his run-in with poison ivy, Dan says that he sees the stuff everywhere. This is particularly ironic, since he thought he knew what it looked like before he had the allergic reaction to it. Before he began the yard work, in fact, I asked him about the vines several times, and he said repeatedly that poison oak and poison ivy weren’t anywhere in our backyard. Now, he’s not so sure. He doesn’t trust his own judgment now.

Sometimes, I feel the same way about his smoldering myeloma. I can’t see it, but I know it’s there. I feel its presence with us. And like a rash that makes you think twice, sometimes I secretly doubt what I am told. I struggle with trust. I can’t help but wonder if we are making the right decisions because everything is at stake, I tell myself. And I don’t want to trust that which I don’t completely understand.

I strive to be “where I am” and not “where I’m not,” but I still get sidetracked and occasionally stymied by this multiple myeloma that lives with us.

Dan’s smoldering myeloma has changed both of us in ways that are innumerable. And as Dan is fond of saying, “We haven’t even reached the hard part yet.” (Yep, that one never makes me feel any better.)

There’s an old saying that houseguests are like fish – neither should be kept around after three days. Well, smoldering myeloma is like being told that you are now living with a fish, and no matter how bad it stinks or changes the way you live your life, you need it to stick around, because the alternative is a lot less pleasant.

So, I strive to live with four-year-old fish, poison ivy, and anything else that comes our way. I try to trust where trust is hard, and know that “what will be will be,” regardless of my comfort with it. Four years on, and I strive to be here – “where I am”, and not “where I’m not.”

The poison ivy may scar. In fact, it’s been more than a month, and the marks are still there. But I can tell you that it’s nothing compared to the scar that multiple myeloma has left upon us all.