For many myeloma patients out there, the chal­lenges of weekly treat­ment in­fusions can create an onerous burden for both the patient and their care­giver. What an understatement!

It’s been tough lately. It’s hard to ex­plain to people that you can put up with almost any treat­ment for a short time, but that be­comes sig­nif­i­cantly more chal­leng­ing when you don’t see an end in sight.

With mixed feelings I hear patients “ringing the bell” to signify the end of their treat­ments at our cancer center. While I’m happy for them, we’ve never rung the bell. My husband Daniel went straight from induction ther­apy to chemical relapse to chemo-mobilization, stem cell trans­plant, and now a main­te­nance regi­men that in­cludes weekly in­fusions of Empliciti (elotuzumab) along with Revlimid (lena­lido­mide) and dexa­meth­a­sone.

We didn’t even get to enjoy off time that comes with the usual two-week dosing of Empliciti because Daniel’s in­creas­ing M-spike and free light chain ratio made it nec­es­sary to put him back on weekly in­fusions in order to con­trol his myeloma.

The good news is that he has reached a partial re­sponse­ now that his M-spike is 0.08 g/dL (0.8 g/l). The bad news is that his doctors have no plans to take him off this com­bi­na­tion. They feel he should stay on it until it stops work­ing. At that point, he most likely will be put on some other in­fused treat­ment to keep his myeloma under con­trol as long as we can.

So, in other words, there’s no end in sight. This is what life looks like for us now. We may never ring the bell.

All the weekly trips to the cancer center, missed time from work, in­abil­ity to travel, failed IV sticks and blown veins, and unpredictable lab results feel like we’re walking in a long, dark tunnel absent of light.

But, of course, when the alter­na­tive is to have untreated, poten­tially un­con­trolled and resistant myeloma with a short life ex­pec­tancy, you “accept” the way that treat­ment takes over your life, even when you’re not the patient. This is why I have devel­oped a silent resentment for myeloma over these last two years.

Recently, I read an article that posed the question: What could be more precious than being free to live and grow honestly? The article main­tained that many people skip the hard work of examining themselves, embracing both the highs and lows of life, and that not doing so stunts one's growth. Most people want to be fully devel­oped, but they don’t want to do the tougher work of honestly dealing with the tragedies and dif­fi­culties of life along the way.

Could this be the key to finding peace with our life, I wondered? Have I been honest with myself about my ex­peri­ence with Daniel’s myeloma and what it has done to me, personally, as a care­giver?

The truth is, I don’t think that I have. I have never wanted to make this about me, because I am not the patient. So, historically, I have lived for and through Daniel’s ex­peri­ence with his myeloma. I have been in “act and react” mode, work­ing as my husband’s advocate, trying to prevent problems and fix our lives when things go off the rails. I project my feelings – all my worries, anger, fear – through my husband’s ex­peri­ence.

I “proactively worry” and obsess over every aspect of his care. I go to every visit, lab, and pro­ce­dure. When he is hos­pi­talized, I live in the room. Thus far, that equals about ten times this year, if you in­clude ER visits. I anxiously watch the nurses insert IVs, track his appoint­ments, double check his meds, ask questions about his plan of care, and act as his advocate.  

I have done these things, even when my husband has asked me to stop.

What I have not done is be honest with myself about why I am doing this or how this ex­peri­ence affects me personally.

Of course, I want to see Daniel get the best care. I feel that this is my most im­por­tant job as his care­giver. But aside from being a care­giver, I am a person without cancer whose life has been irrevocably changed by cancer.

I resent multiple myeloma. I hate what it has done to our lives. I hate what it is doing to my husband. I hate what it has done to me, and the stress that it brings to my life every day.

We hear that care­givers need to give themselves a break. They need to take a break from the routine to recharge their batteries and de-stress. But, in my case, it’s easier said than done. If I were honest, I’d admit that I don’t want to let go. I don’t want to leave his side, even if it would do me good to do so.

Like the holes it bores into patients’ bones, myeloma can bore holes into the lives of care­givers as well.

At the end of the day, Daniel can get through treat­ment without me being there. If I cannot be honest with myself about that, then myeloma wins even if the treat­ment works. If I cannot seize Daniel’s myeloma, I should loosen my grasp.

I look for­ward to the day when maybe we can ring the bell and his treat­ments will be over. Maybe, against all odds, we can go back to joyful living away from the cancer center. Hopefully, when that day comes, both of us will be “healthier” for it.