Lately, our life reminds me of one of those 80s movies where some fraternity pledge is getting spanked with a wooden paddle, and the wincing recruit says, “Thank you, sir! May I have another?”

My husband, Daniel, has just finished his second cycle of Kyprolis (car­filz­o­mib), Revlimid (lena­lido­mide), and dexa­meth­a­sone (Decadron) treat­ment for his multiple myeloma. He seems to be tolerating the regi­men reason­ably well, given the side effects that he could be having. However, we already have seen our fair share of chal­lenges, and they are intensifying with each session in the in­fusion chair.

First and foremost, each week we hope that his blood cell counts will be within acceptable ranges so he can con­tinue with his treat­ment regi­men. Like many cancer patients undergoing treat­ment, Daniel is on a neu­tro­penic seesaw. Two weeks ago, his absolute neu­tro­phil count and white blood cell count had dropped too low for him to be able to con­tinue treat­ment. He was given Neupogen (filgrastim) shots and sent home to lay low, avoid the public, wear surgical masks, and practice good hand washing. He lived in a near-sterile bubble until his white blood cell count had a few days to get back to acceptable ranges so that he could resume treat­ment.

As a care­giver, I’m learning that these treat­ment cycles are a well-orchestrated symphony of many, many moving parts. Anyone who has ever had to delay their treat­ment also knows the added stress that comes with re­schedul­ing appoint­ments to be within the correct time­lines once some­thing has shifted. In our case, Daniel has his Kyprolis in­fusions twice a week. The current plan is for him to com­plete four 28-day cycles, which in­clude 23 days of treat­ment and five days of rest. After the four cycles are com­plete, he will have an au­tol­o­gous stem cell trans­plant, which will probably be in August.

Within his treat­ment cycle, there are specific days that are designated for dif­fer­en­t activities. On precisely numbered days within the cycle, he has blood tests and fast-track appoint­ments with myeloma staff to review his test results before treat­ment in­fusions. He also has 24-hour urine and full myeloma blood panels that are for his myeloma specialist, once-a-month on­col­ogy appoint­ments to check his progress, and appoint­ments with his stem cell trans­plant specialist to plan for the upcoming trans­plant.

In addi­tion, there are specific days in each treat­ment cycle in which he only takes oral med­i­ca­tion (no in­tra­venous ther­apy). On days 22 and 23, he takes five dexa­meth­a­sone pills that keep him from having to return to the treat­ment center for dex shots, since he does not receive Kyprolis on these days. On days 24 through 28, he has “rest days” where he only takes sup­port­ive med­i­ca­tion, such as Valtrex (valacyclovir) to prevent shingles; baby aspirin to prevent blood clots; Zantac (ranitidine) to prevent irritation of the stomach lining; and magnesium and vitamins D and B12, which he takes daily to sup­port blood insufficiencies.

As you can imagine, if you have to delay treat­ment for any reason, it takes a lot of patience and follow-up phone calls with several depart­ments and schedulers to ensure that all the appoint­ments are occurring in the correct sequence again. Then the next week might bring low platelets or neu­tro­phils or some other issue that causes the cycle to begin all over again.

But the scheduling is the least of it, of course. The danger of being neu­tro­penic is that one is more sus­cep­tible to dis­ease, viruses, and harmful bacteria, because one's immunity is dangerously low. We take it very seriously. The last thing we want is for Daniel to end up back in the hos­pi­tal, as he was before he started treat­ment, when he was admitted with a fever and in­fec­tion of unknown origin.

He has other side effects as well, ranging from lower gastro­in­tes­ti­nal issues to jaw cramping.

The worst of it, how­ever, is definitely the fatigue. The smallest activities, like being out of the house for a few hours, really take it out of him. He has noticed this fatigue in­creas­ing with each week of treat­ment. Knowing how exhausted he is now that he has com­pleted his second cycle, I wonder what he will feel like during the fourth cycle of treat­ment, or during his stem cell trans­plant. I hope that he will ramp up slowly, and not have it hit him like a ton of bricks. I just tell myself that people survive these trans­plants every day. It will be hard; but he will get through it.

We’re very fortunate that Daniel’s job has arranged a laptop for him and allowed him to work from home, so he can avoid going in to the office when he is not feeling well or shouldn’t be out in public. Oddly enough, he is able to get even more done from home, since he can work at all hours, which comes in handy on those “dex days” when the steroid has him wide awake and unable to sleep at 3:00 am.

Daniel also has a terrible time with his veins blowing, which is particularly nerve-wracking ex­peri­ence given that he gets multiple IV lines inserted each week. He doesn’t have a port yet, so the IV lines have to be inserted in his hands or wrists or wherever the staff can find a vein. He says that it looks much worse than it feels, but I sus­pect he is only saying that for my benefit. It is hard for me to watch, and on more than one occasion, I have spoken up and asked the nurse to stop because he or she was digging around too long and it didn’t look like they could get the job done.

This brings me to what may be the hardest part of all of this, and that is the emotional strain that all this brings.

No one can really prepare you for the emotional toll that having myeloma or caring for someone with myeloma takes. My husband and I deal with this emotional stress very dif­fer­en­tly. There’s been more than one occasion where I’ve spoken up – because someone needed to speak up – and he didn’t want me to do so, or he wanted me to handle the situation more like he would have. There have been times when I’ve felt powerless and unappreciated, and there have been times when he has felt powerless and smothered.

Whether you’re a care­giver or a patient, it’s not easy feeling like you have no control. And to be honest, being in control is a luxury that we don’t seem to be afforded these days. Thank goodness we have good communication skills, and we always find a way to talk out the diffi­culties that treat­ment is imposing upon us, but what choice do we have? The alter­na­tive is to not take the treat­ment, which of course is no option at all! We know how fortunate he is to be able to receive this treat­ment!

So it is with this sense of awareness and thankfulness that we ap­proach this time in our lives with equal parts of love and hate: happy that he is getting the life-saving care he needs, and resigned that it is taking its toll.

On the bright side, this won’t last forever. After this fall, induction ther­apy will be behind us, and by next spring we could be globe­trotting like we did when he was smol­der­ing.

For now, we’re like the pledges from the movies. We arrive each week asking, “Thank you, sir! May I have another?”