For one day each week, my children have a special nickname for me. It’s Tyrannosaurus Dex!

I suppose that it is fitting that a wise-guy has wise-guy children!  Here’s how I earned this tongue-in-cheek moniker.

Like many multiple myeloma patients, I have a love / hate relationship with the potent corticosteroid, dexamethasone ^[1] (Decadron), also called dex for short. I love that dex offers positive health benefits to many of us facing a diagnosis of myeloma. Conversely, I hate that dex is also known to cause a wide array of side effects in some patients, including me.

Dex has been part of my treatment plan through two rounds of induction chemotherapy, two autologous stem cell transplants, two rounds of consolidation chemotherapy, and through the periods in-between those fun events.  And as of this writing, I have completed 130 weeks of a 156 week maintenance chemotherapy protocol in which I ceremoniously take dex once a week.

I have swallowed a lot of those little green dex pills over the last three and a half years and they haven’t left me unscathed.   What I have also learned is that dex affects my family in interesting and unexpected ways.

When asked about dear old Dad’s dex use, my wife and daughters are not shy about sharing their unique perspectives.

My wife, Karen, reminded me of this:

“I remember the oncology nurses saying that dex might cause, among other things, a spike in your energy levels. There was one time while you were early in treatment that you took it upon yourself to tidy-up the apartment we had rented. While I appreciated your effort and your energy, especially since you weren’t feeling well, I wasn’t prepared for you to start the job at 3 a.m.! That was the dex driving you.”

“And there was one evening that you became fixated on doing something or other with the computer. You were still fiddling with it when I went to bed. When I woke up in the morning, you were upset that you had changed the computer password and couldn’t remember what the new one was. It was so unlike you. I think that must have been a combination of dex and chemo brain!”

Apparently on one auspicious dex night, I became focused on neatly wrapping all of the cables and cords for the computers, the stereo, the audio/video equipment, even the lamps; they had to be wrapped and run exactly in a precise way. There was another dex day that I insisted that the laundry be folded just so. And on another day, my hands were shaking so badly from the dex that I spent 45 minutes trying to thread a needle to sew on a button that had fallen off of my shirt – and I wouldn’t let Karen help me.

Yikes! These antics were not normal to me when I was not taking dex, and they certainly weren't important enough to worry over. Sure I wasn’t feeling well and I was being pumped full of meds, but my behavior while on dex, was clearly off kilter. I was never violent, never destructive, never screaming, but I chose odd things to occupy my focus.

Karen said that while I was on dex, I would try to engage her in long-winded conversations about uninteresting topics that had seemingly come out of the blue.  We vowed for richer or for poorer, in sickness and in health, but I never asked her to stick with me through boring! I’m glad that she’s riding out this peculiar dex storm with me.

And I’m not the only myeloma sufferer that suddenly gets the gift of gab while on dex. I remember several times in the waiting room of the infusion clinic, when there were so many patients on dex that they were chattering on a-mile-a-minute and at high decibel levels.

It’s funny, but when you are on dex, you don’t notice those behaviors. You are too busy talking quickly and loudly and yucking it up about things mostly inconsequential to realize that you’re acting a bit cuckoo. Not that there’s anything wrong with that.

Karen said that the poor caregivers would demurely head for the halls or retreat into the corners of the waiting room to bury their heads in magazines as their loved ones joined in the noisy fold. Nurses have confirmed that this group dex behavior is common.

And now, every Wednesday for the last two and a half years, I have been getting a Velcade ^[2] (bortezomib) infusion and taking dex in order to keep my myeloma at bay. I have found that taking the dose of dex on Wednesday night, as I’m heading to bed, offers me the best option in combating the insomnia that dex brings on.

Dex, unfortunately, only allows me to sleep for four or five hours on Wednesday night. Despite too little sleep, on Thursday the dex causes me to be wildly energetic (the girls say high-strung), but shaky. Then, although I am exhausted, I have a very difficult time getting to and staying asleep on Thursday night.

I have tried several sleeping medications (they make me feel like a zombie for days afterward), breathing and relaxation techniques, and other remedies, but I have resigned myself to the fact that I will be high-strung on Thursdays and will not sleep on Thursday night. I am fortunate that I work from my home and I can adjust my schedule to fit this weirdness.

So the three big side effects of my using dex are insomnia, shakiness, and irritability.  Others suffer through raised blood pressure and glucose measurements, stomach problems, and a host of other physical symptoms.

My oldest daughter, Kate, recalls a Thursday evening at home when one of our dogs came racing into the house through the doggie-door. The poor pooch just reeked to high heaven from having been sprayed by a skunk. I remember catapulting into action to take control and get the dog out of the house and into a ‘skunk bath’ of dish washing detergent, hydrogen peroxide, and water. Living in a rural area, we were old hands at this.

What my family remembers of that evening is that I stood up and began barking indecipherable orders at a high-fever pitch. And the more they stood and stared at me, not knowing what the heck I was asking them to do, the more infuriated I became.  Sheesh! Cooler heads eventually prevailed, and we got the mutt into the bath. We all lived through the escapade, including the dog, and we still share a hearty laugh about the skunk incident.

I’m sad, and a bit embarrassed, to say that my family has learned to tread a bit more lightly around me on Thursdays and Fridays because of my dex-induced state.  They know that my uncharacteristically short temper, my talking on and on, and my general wackiness isn’t normal, isn’t harmful, and isn’t my fault.

Thus we call these tumultuous Thursdays Tyrannosaurus Dex Day. A day when the other creatures in the Murray household steer clear of confronting the semi-ferocious dinosaur roaming the premises. 

Katie doesn’t ask for a raise in her allowance on Thursdays. Little Lizzie makes a game out of it. She sits on my lap, stares in my eyes, and asks me if I am dexing. Then she starts a tickle fight that always leaves me laughing, after all, she ‘ain’t afraid of no Daddysaurus Dex,’ as she says. My good wife very gently and lovingly keeps tabs on me.

What we have discovered is that the secret to successfully navigating through the rough dexamethasone side effects that I exhibit is knowing and anticipating that Thursdays are rough for Dad and the family. I am aware that I am subject to dex’s follies, and I make sure that I don’t schedule meetings or events on Thursdays if I can help it. I don’t put myself in stressful situations. I continually ask my wife and kids to forgive me for my outbursts – and they do.

Sounds silly, doesn’t it? Except to those of you who have dealt with dexamethasone and know that you can’t just wish away these side effects. I am convinced that dex is an integral part of my myeloma treatment, and I will continue with it until I am no longer confident that it is what I need.

Some multiple myeloma patients have many more significant and serious side effects from dex and still others can’t tolerate dex at all. If you’re taking dex, please acquaint yourself with the warning literature accompanying your dex prescription and keep in close contact with your physician to monitor any problems that might be present.

And for you caregivers – Courage! The lashing out, the insecurity, the highs and lows that stem from your loved one’s use of dexamethasone, let alone dealing with all aspects of multiple myeloma, can be an exceedingly difficult thing to handle. Thank you for your loving support.