There are times when I wonder how we got here. There was a time before these days when we were newly married. Not even 30 years of age, we were carefree and filled with the op­ti­mism born of a newlywed couple. The future was an unwritten book, full of world travels, chil­dren playing on vin­tage harlequin tile floors, and growing old together.

That was nearly 15 years ago. I barely recog­nize us now. The love remains – and nothing could change it – but these days are not what we planned, and sometimes I feel much older than I should.

I took my husband Daniel to the emergency room (ER) again. This time, he had a 104 degree Fahrenheit (40 degrees Celsius) fever, and the pain in his side had grown from a slight annoyance into an unbearable, excruciating issue. It was his 8^th or 9^th ER / hospi­tal­iza­tion trip since March of last year.

The last-minute scramble should be familiar by now: clothes for both of us (since I sleep on the couchette in his room), toiletries, makeup, Dan’s CPAP machine, his pillow (since the hos­pi­tal pillows are so flimsy), his noise cancelling headphones (so that he doesn’t here his IV machine beep through­out the night), electronics, charge chords, batteries, and my laptop (so that I can work offsite), all his med­i­ca­tions (in case orders aren’t written / filled in a timely fashion), printed instructions for someone to care for our cats, fresh food and water for the cats until the cat’s care­giver gets here, a few granola bars (since they don’t have room service in the ER), and a file with medical power of attorney, living will, and all our paperwork.

This time, Daniel had pneu­monia, probably left over from the pneu­monia he had last De­cem­ber that hadn’t com­pletely healed. He also had a lower lung pleural effusion (fluid be­tween the lungs and the chest cavity that puts pressure on the lungs like a blister needing to pop), and what could have been a partially collapsed lung. All con­trib­uted to the intense pain in his back flank.

We waited in the ER all night. Around 1 a.m., they released us into the pouring rain with prescriptions to fill and a return visit with his myeloma specialist the next morning. Daniel was adamant. He really didn’t want to be in the hos­pi­tal, so they let him recuperate at home, a more peaceful en­viron­ment where he was likely to sleep better and less likely to get addi­tional in­fec­tions. My job was to take his vitals, ensure that he took all his med­i­ca­tions, keep him on bed rest, and bring him back to the hos­pi­tal if his tem­per­a­ture returned.

As I drove us home that night, the dark streets wet with the events of the long night, I felt the weight of every hos­pi­tal trip we’ve made.

Daniel was talking with a friend of ours. He and his wife had just come through a medical ordeal with their young daughter. After months of stress, failed pro­ce­dures, and living away from home, our friends were happy to report that the last pro­ce­dure corrected their daughter’s issue and that she was “well” enough to travel home.

When Daniel asked the dad how he felt, he described not knowing how to feel. He was afraid to believe that it was over. He said it was like he had post-traumatic stress disorder (PTSD), and he was waiting for the next crisis.

I im­medi­ately under­stood his remark. I feel the same way about Daniel’s multiple myeloma.

For the last seven years, we’ve been making trips to the cancer center to seek care for Daniel’s myeloma. Last March, his smol­der­ing myeloma progressed to active myeloma when bone lesions were found in his clavicle and spine. Since then, he has been on myeloma treat­ment almost con­stantly. He’s endured induction ther­apy, stem cell mobilization, an au­tol­o­gous stem cell trans­plant with four dif­fer­en­t agents (not just the standard mel­phalan), and con­tinued main­te­nance ther­apy with Empliciti (elotuzumab), Revlimid (lena­lido­mide), and dexa­meth­a­sone. Additionally, he’s suffered from side effects, in­­clud­ing kidney stones, blood clots, pul­mo­nary emboli, influenzas, pneu­monias, and nausea. I can count the number of times that we haven’t been at the cancer center at least once a week – and often several times a week – since last March.

We have had almost every ex­peri­ence imaginable this past year: staff rushing in with emergency response team carts, tough conversations, long days. What we have not ex­peri­enced is a com­plete remission. We are still waiting for that day.

Every time we drive into the parking garage at the treat­ment center, I feel it coming over me, that raw, exposed feeling that lies deep within the pit of my stomach. I wonder if it comes over him too? We don’t talk about it. Instead, we make glib remarks about how packed the garage is that day, or how the newbies don’t know where to park. I swallow down the feeling as we walk to­wards the build­ing. With each step from the car to the door, I walk into the place of my nightmares. I’ve seen Daniel suffer there. We’ve suffered there. Not just the hassles of fighting over incorrect billing, or waiting for two and half hours past your in­fusion time, knowing that you won’t get out of there till 11 p.m. and you still have a 30-minute drive home before you can get to bed and get up to go to work in the morning. No, I’m talking about seeing a loved one’s physical pain, nausea, sickness, and misery. That place holds all those memories for me.

And the thing is, no one is to blame. It is what it is. These were the cards we were dealt. So, despite feeling like a shell-shocked survivor, we suit up and return to take a stand in this battle. And we fight against my husband’s myeloma. We do it every week. We do it every day. And we always will. That’s how love wins over multiple myeloma.