A (treatment) Day in my Life

What does a multiple myeloma patient go through on a typical day of treatment? The short answer is a lot. This is just an example of one day.

The alarm yanks me from my dreams and I rub my eyes to help them focus. It’s 5:15 a.m. and I need to get moving. I hate getting up this early, but the cancer center is an hour drive away, even early on a Saturday, and my blood draw is at 7:00 a.m. I rationalize the early start knowing I want to get my treatment done and out of the way. 

Even though I’m not awake enough to feel hungry, I grab a quick bowl of cereal so I can take my dexamethasone (Decadron) before leaving the house.

Before getting dressed, I put a spot of lidocaine cream on my port to allow painless access for the blood draw and IV insertion. I cover that with a patch of Press’n  Seal and finish getting dressed. Note to self: Write to Glad and tell them all the new uses I’ve discovered for their product since my diagnosis.

The drive south with my wife is quiet, as usual, since we aren’t really awake. Although, this time in the car sometimes focuses our thoughts on multiple myeloma, treatment, and our future together. Maybe today we will open up about these things during the commute as we sometimes have in the past.

My current maintenance schedule gives us many opportunities for these conversations.  I travel to the clinic three times a month, and my wife or another family member always accompanies me. I don’t really need any assistance, but they have committed to joining me on my myeloma journey. I feel great comfort knowing I’m not alone. I give my time to treatment to stay alive; they give their time out of love.

After we arrive, I check into the lab for my routine pre-treatment blood draw. The young woman at the counter recognizes me, smiles and calls me by name. I enjoy the friendly greeting, but I try not to think about the fact I’ve come here frequently enough to be recognized. 

When I’m called back to the nurses’ station, I unbutton my shirt and expose my bare chest, and the port, automatically without hesitation. This has become second nature, as this disease and continuous treatment have revised my previous notions of modesty. The nurse accesses my port and draws the vials of blood to be tested, to see if the maintenance treatments are keeping the myeloma at bay.

Because this is the first day of a new treatment cycle, I’ll meet again with Josh.   He is the nurse practitioner primarily responsible for my care.  Today, like most of the previous days I’ve come to the clinic during maintenance, I’m feeling well.  My labs are stable so there isn’t a lot of new information to discuss.  I still enjoy my short visit with Josh.   He seems genuinely interested in helping me to preserve my normal life, beyond the clinic. He sees me, not just my diagnosis.

I don’t see my oncologist regularly at this point in my care. I’m reminded this is a good thing; it means everything is going well.  I recall my conversation with him over a year ago when we decided on this course of maintenance.

Thankfully, my initial treatment and autologous stem cell transplant led me to a complete response.  However, my “high-risk” cytogenetics always direct our decisions regarding treatment. My doctor described an aggressive three-year maintenance course supported by a study out of Baylor.  Trusting his judgment, I started this regimen of Kyprolis (carfilzomib), Pomalyst (pomalidomide), and dexamethasone (KPD). 

After Josh gives me the all clear, I head upstairs to the infusion department, where another familiar face checks me in.

When I’m called from the lobby, I’m assigned a bed in a private treatment room. The nurse takes my vitals and tells the pharmacy to prepare and deliver my medication. 

Like most treatment days, I must wait nearly an hour for the Kyprolis to arrive. The actual time I’m having blood drawn, seeing a provider or receiving medication is about an hour. The total time spent at the clinic is often close to four hours.

Kyprolis is administered by IV over approximately 30 minutes. I’m familiar with Kyprolis as it was part of my initial treatment.  At full dose, it is administered on two consecutive days.  As part of the maintenance plan, I receive a half dose in a single day. In both cases, the treatment occurs three times a month.

I close my eyes and let my mind drift as the medication flows into my veins. Two years ago, the first time chemotherapy drugs were introduced into my body, this procedure was very foreign. Now, after nearly 25 cycles of treatment and a stem cell transplant, it has become routine. In truth, I relish the chance to rest and catch up on the sleep I lost coming in so early. 

I don’t need to understand the complexities of the science and what is happening in my body. Knowing objectively that the chemicals being introduced are deadly to a healthy person, yet life-preserving for me is enough. I still don’t feel any different as the drugs enter my body. I’m also grateful that I’ve never needed the prescribed anti-nausea medications. In the end, the medications are effective with only minor side effects.

On the drive home, though, I share with my wife that I find maintenance treatment mentally challenging. With the initial treatment and stem cell transplant, the goal was obvious: destroy the myeloma cells and rebuild my immunity and other normal body functions. 

With the myeloma removed from my system, the cost-benefit analysis of continued treatment isn’t so clear. Although mild, the side effects of the medication negatively impact my life. Because there is a chance the multiple myeloma would stay away just as long without maintenance, it is easy to question the decision of continuing to undergo treatment. Maintenance is still recommended by the science, especially since I’m at a higher risk of relapse. In the end, I act on the recommendations of my medical team and accept the costs of treatment in hopes of obtaining a prolonged remission.

Today, and the next 21 days, I will take my Pomalyst capsule before I go to bed.  Tonight, though, I will feel exhausted, but the dex will make sleep almost impossible. I’ll take my prescribed Ambien, which should help me get to sleep, but I’m still in for a restless night.

If all goes well, today will be repeated three times a month for at least the next two years. I don’t want the days to be more eventful, the labs to be different, or the news to be surprising. If I’m lucky, nothing will change. There’s something to be said for the status quo.

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 Photo Credit: (c) 2016 Mark Pouley

This is another photo of beautiful North Twin Lake. I think it is a good example of the beauty of “sameness.”  Blue and more blue with just a ripple now and then to move the surface.

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