I try to ap­proach life with a Rosie Riveter attitude of “We can do this!” I try to be en­cour­ag­ing, especially given the chal­lenges that go along with cancer treat­ment. However, since my husband Daniel began induction treat­ment last March, it’s been one uphill battle after another.

Recently, I was fighting insurance and I asked myself, “What could possibly hap­pen next?”  And the universe answered with a re­sound­ing: shingles!

Like many patients, Daniel had chicken pox as a child. People who have had chicken pox before are at a greater risk of devel­op­ing shingles. To combat that risk, Daniel’s been on once-a-day valacyclovir (Valtrex) as long as I can remember (at least since his stem cell trans­plant last fall, and possibly before that when he was undergoing induction ther­apy.) Un­for­tu­nately, he may not have been getting a high enough dose.

Over two months ago, Daniel started getting a small red rash on his side. I didn’t know about it for a couple of days until I noticed that a “band” of red bumps were “wrapping” from his side to his back. I noticed them on a Thursday morning and asked Dan about them. He said they itched, but they didn’t hurt, and that we should watch them. I took pictures of them so that we would have a visual record in case they got worse.

By Friday morning, some­thing had changed. They were much more inflamed, and Daniel said that they now itched very badly and they were painful. They even had pustules now on the “heads” of the bumps. I was con­cerned.

I took photos of the changes on his back, and I im­medi­ately called his myeloma specialist’s office. She was out of the office, but they worked us into some­thing they call “fast track,” where we could meet with a mid-level provider like a nurse practitioner or physician’s assis­tant.

The nurse we met with looked at Daniel’s back and side, but he didn’t think it was shingles. Daniel described the pain as itchy and burning, but the nurse thought that if it were shingles, then the bumps, which were a dark pink color at this time, would have been darker red with dark red bands to link the bumps in patches going around his side. Also, Daniel had bumps not just on his side in a lateral pattern, but going up along his spine and neck as well. The nurse was confident that it was contact dermatitis. I was not.

I con­tinued to ask questions. The nurse also said that if it were shingles then we would see pustules. I told him that he did have pustules, and showed him the photos on my phone that we could "zoom" in on to get a closer look. The nurse practitioner conferred with Daniel’s specialist by instant message, and they de­ter­mined that it was contact dermatitis. They sent us home with a steroid cream to apply several times a day to the rash with instructions to come back if it got worse.

Boy, did it get worse.

I started applying the cream that very day. We were out of surgical gloves, so I applied it with my bare hands to the rash since they were confident that it was just a nor­mal skin rash and not shingles. By Sunday the rash became much more painful and large crimson colored blisters started popping up all over his sides, back, and his neck. I con­tinued to apply the cream, but I didn’t believe for a second that this was contact dermatitis.

I called his specialist on Monday and waited for a return call. By afternoon we were able to speak with her, and we were told that Daniel needed to report to the emergency center at the cancer hos­pi­tal. Dan was uncomfortable, in pain, and we had to wait for several hours before they could even get him in a room.

We went through the spiel again. We showed pictures, described the symp­toms, and con­firmed that he hadn’t been exposed to any­thing that he was allergic to. They took a fluid sample from one of the large, defined bands of pustules and con­firmed what I long sus­pected: Daniel had the herpes zoster virus.

Unfortunately, it tested to be the disseminated form of the virus, hence the shingles bands occurring along multiple nerve bands and in multiple places on his back and neck. Because the virus was disseminated, it was much more dangerous and had to be treated with high-dose antibiotics and anti-virals. We were told that this required hospi­tal­iza­tion.

In fact, Daniel needed to be put in a reverse isolation room. Unfortunately, these rooms were all taken, so we were moved to a similar temporary room in the emergency center that had an ebola prep cart in the anteroom outside of it.

We waited there for news from the doctors or anyone that would give us status updates. We waited in that room for almost 24 hours before they had a real hos­pi­tal room for Daniel. We asked if they would send us home and call us when a room was ready, so that Daniel could get some sleep in his own bed. They cited public health con­cerns and wouldn’t let us leave. (They didn’t seem to have these con­cerns the pre­vi­ous day as we waited three hours in the lobby with sick cancer patients for them to admit him into the emergency center. That was frustrating.)

Over the next few weeks, Daniel was hos­pi­talized and given high-dose acyclovir (Zovirax) to control the shingles. Eventually, he was sent home. As the weeks went by, the shingles virus abated and began disappearing, but another skin rash presented itself and we were back at the hos­pi­tal again.

The myeloma team, the infectious dis­ease team, and two doctors from the dermatology team all examined Daniel’s rash. None of them believed that it was shingles this time. Some of the doctors wanted to have it biopsied and wait for the tests to con­firm the diag­nosis. They thought it would only take a couple of days for the tests to get back. We did not share their op­ti­mism, especially because this was Labor Day weekend.

We were tired of being in the hos­pi­tal. Daniel had used up his sick leave time for the year, and we were now burning through his vaca­tion days. It took an act of Congress to get them to release him from the hos­pi­tal. We insisted that they send him home, since the reason why they hos­pi­talized him, suspicion of shingles, was not found.

Daniel worked from home the rest of that week and recuperated from all the mayhem. We kept him indoors and away from the public until we had con­firmation that his new rash wasn’t the shingles. I’m glad that we didn’t agree to stay in the hos­pi­tal because it took more than a week for the test results to come back from the lab.

The diag­nosis was con­firmed as focal acantholysis, a rare, temporary skin con­di­tion, and we were told to monitor him for the next week to ensure that all of the shingles rash was dried up and crusted over. When we returned to the myeloma specialist for her to clear him to start treat­ment again, all of the shingles rash had dried up and was no longer contagious.

Between the shingles and the focal acantholysis, Daniel was not able to receive his weekly Empliciti (elotuzumab) in­fusions for more than a month. Unfortunately, all this hap­pened just as his myeloma was beginning to respond to the in­fusions. Now his M-protein has gone back up again due to his not being on treat­ment for several weeks. What’s the old adage? Two steps for­ward, three steps back.

It’s been a very frustrating couple of months be­tween hospi­tal­iza­tions, dealing with all the dif­fer­en­t doctors getting on the same page, and the weeks at a time be­tween the outbreaks where we had to hole up like refugees in the house.

Thankfully, I myself never devel­oped shingles, despite rubbing cream all over Daniel's rash when he was first misdiagnosed. I suppose there was one good thing that came out of all of this.

Now Daniel has resumed weekly in­fusions and we hope to regain the ground he lost. Daniel now takes twice the amount of his daily valacyclovir than he took before. We’re thankful that his shingles didn’t last longer than it did, and we hope that we won’t see it again.