Here we are again. It’s 4 a.m. and Daniel, my husband with myeloma, sleeps inter­mittently between inter­rup­tions from the hospital staff. His last dosage of Lovenox (enoxaparin) was admin­istered at 2 a.m., and they’ve just come in again to get his blood pressure, tem­per­a­ture, and urine output (which hasn’t changed since the pre­vi­ous inter­rup­tion).

Last time I wrote such a column, we were on the stem cell trans­plant floor at the cancer center, trying to understand Daniel’s in­fec­tion and immunity issues that hospitalized him for two days.

Tonight, we are in the emergency center at the hospital because he has multiple pul­mo­nary emboli throughout both of his lungs. He likely has blood clots in his legs as well, all due to side effects from his induction ther­apy.

The attending physician said that this a fairly common thing. One of the nurses said that she sees patients all the time with blood clots due to treat­ment. It didn’t seem normal to me at all. My 44-year-old husband has potentially fatal blood clots in his lungs and legs, and his physicians con­sider this a “normal response” to his induction ther­apy.

But that’s not the end of it. In the last 14 days, we have spent five days in the hospital. Two weeks ago, we were in this very emergency room. Daniel had intense pain in his lower abdomen and side. Scans identified distressed kidneys and ureters, and it was determined that he had passed a kidney stone. Daniel has never had kidney stones before, and they do not run in his family. Despite not being a known side effect of his treat­ment, we can only assume that they’re related to his induction treat­ment or supportive medications.

Between his treat­ments, labs, doctor’s appoint­ments, and hospi­tal­iza­tions, I can’t remember a time when we weren’t at the cancer hospital at least half the week.

We are sleep deprived. The hospital is booked, so they can’t put us in a proper room tonight. Dan’s feet hang off from his too short hospital gurney, and the hospital staff come in every hour to “check” on him with their instruments and measures.

I have a stiff-backed chair to sleep in and a heavy heart for com­pany, so I look out the window, and I think about the last few months. I try, but I fail to remember what life was like before this myeloma, with its long, dark night.

It’s ironic that for the six years leading up to the discovery of his bone lesions in February, I dreaded the induction treat­ment and the stem cell trans­plant. Tonight, I realize that the treat­ment is only half the battle. The side effects seem as deadly as the cancer itself.

Dan has always said that having myeloma was like the 80s Atari game of “Pitfall,” where an archae­olo­gist crawls down ladders, runs along swamps, and jumps over water hazards to reach the prize.

In the game as with his myeloma, there is almost always something lurking around the corner. Lately, the safe place seems only temporary. After every success, there’s another alligator, swamp, or trap to stumble over. The difference is that "Pitfall" offers three lives for every play, and I find myself wondering how many close calls we have left.

The truth of it all is that no matter how vigilant I am, I have no control over this disease. I watch that Daniel takes his medication. I make sure that we are on top of his labs before every appoint­ment, and I call his care team at the first sign of a problem. But we couldn’t have anticipated this latest devel­op­ment. It wasn’t even on my radar.

He’s had the symp­toms for months now: shortness of breath, dizzi­ness upon standing, coughing, tightness in the chest. But there was always a reasonable explanation for them. His hemoglobin and white blood cell count have been low, he’s been anemic and fatigued, he has had seasonal sinus issues, etc.

I can’t express my thankfulness enough that Daniel’s myeloma specialist sent us to the emergency center today. When we called her with our concerns, she listened intently. She asked him to record his pulse and blood pressure after walking from the bedroom to the living room, and the results made it im­medi­ately clear to her that he might have a pul­mo­nary embolism. Untreated, Dan might’ve died in his sleep. There’s no way that we could’ve known that he had blood clots all through both his lungs. It was such a shock.

I tear my gaze away from the window and look at Dan sleeping on the gurney beside me. I know that this ruminating isn’t prod­uctive, so I try to focus on what lies ahead tomorrow.

Daniel has just com­pleted week one of cycle four of Kyprolis (car­filz­o­mib), Revlimid (lena­lido­mide), and dexa­meth­a­sone (Decadron). His specialist has determined that the Revlimid is likely the source of the blood clots, so they will be removing it from his induction regi­men.  Daniel will be getting Lovenox injections twice daily (administered by me) as anti-coagulant ther­apy. The blood thinners should dissolve the pul­mo­nary emboli in time along with any blood clots that he has in his extremities. They are temporarily suspending treat­ment to give Dan’s body a chance to rest and let the Lovenox get started.

In a week’s time, they will restart cycle four from the beginning, but this time it will only be the Kyprolis and the dexa­meth­a­sone. After that, he begins a battery of tests, including another bone marrow aspiration in preparation for his stem cell collection and trans­plant beginning August 13^th. August is going to be one tough month.

There’s still the issue of response to induction ther­apy to con­sider as well. Thus far, Daniel has achieved the partial response his specialist targets for the stem cell trans­plant, but we are hoping for a deeper response by the end of this cycle.

In my column last month ^[1], I discussed how we might add another drug to his induction cocktail, but in our case, it didn’t look like adding another drug would get us to a com­plete response, and it didn’t make sense to burn through another line of ther­apy if it wouldn’t likely yield the results we needed. Therefore, we decided to con­tinue with the current treat­ment. Unfortunately, the Revlimid is going away now, so I don’t know if it’s realistic to ex­pec­t a very good partial response from the Kyprolis-dexamethasone com­bi­na­tion.

As I ponder these things, I want to be encouraging. I think of what he needs. I think of all the myeloma community who might need a cheerful word; but I am weary and the words won’t come. Dawn is near, and I need to muster my “game face.” But until the sun rises, I sit alone con­sidering the pitfalls that await.