In February, I endured a record run of “lost days.”

If you are a cancer patient, you know what a lost day is. It is a day you feel groggy, unfocused, and you sleep a lot.

I can’t accomplish anything on a lost day. Really, I can’t remember many details of a lost day. This phenomenon could be due to a medical pro­cedure, the myeloma treatments I receive, or even trauma.

For four months, I would experience a lost day every Monday. This is the day I receive Darzalex (dara­tu­mumab) plus Velcade (bortezomib) and dexamethasone (Decadron).

The Darzalex-based treatment regimen has worked really well for me. When we began this new protocol, I was severely anemic, low in platelets, and immuno­com­promised. I was ill. Yet, after just six weeks on the new regimen, all my symptoms disappeared.

The primary downside to Darzalex is that your body can mount a powerful inflammatory response with the first dose, and sometimes later doses as well. This reaction occurs because the immune system initially per­ceives Darzalex as a potential threat, and the inflammatory response is the body's way of trying to protect itself.

Like many others, I experienced an infusion reaction with the first dose of Darzalex: fever, chills, and in­creased sedation. The good news is that my body has adapted, and I haven’t had a reaction since.

So what is my complaint? Here is a drug that has extended my life, and I am whining.

My problem is with the additional drug Benadryl (diphen­hydramine), a potent antihistamine that I receive to prevent infusion reactions.

Also, Darzalex infusions are given slowly to help prevent infusion reactions. So I’m at the cancer center for six hours for each infusion.

In addition, two out of three weeks, I receive a subcutaneous injection of Velcade and oral dexamethasone. I also receive Tylenol (aceta­minophen, paracetamol) and metoclopramide, all in pill form, and one hour before before the Darzalex infusion, I am given intravenous methyl­pred­­nis­o­lone. So on these days, my body re­ceives a total of seven drugs intravenously, subcutaneously, and orally. No wonder I feel weird by the end of the day.

Yet the drug that really slams me is Benadryl. In a matter of minutes, I become quite groggy. I am unable to read, to make phone calls, or write notes. In addition, I need a ride home. As a goal-driven person, I struggle with not being able to accomplish anything for an entire day. Monday is a lost day.

Velcade causes lost days as well, but the effect of this drug is more gradual. By the end of a Velcade cycle, which consists of four injections over two weeks; I notice the cumulative side effects. Neuropathy, gastro­intestinal complaints, and fatigue are the common side effects for me. Plus I require daily naps, and have difficulty focusing on projects. By the second week of the cycle, I have lost days.

For three months, I took the bad with the overwhelming good of the treatment protocol.

I expected little of myself on infusion days, slept a lot, listened to music, and drifted the day away. I did learn to walk with someone at the end of the day, to shake the drowsiness. I did not complain, much, because I was grateful for how well my myeloma was responding to the new treatment regimen.

Then two months ago, in February, 2017 I was brought down with a double whammy.

First I needed to get a “blue light special” from my dermatologist. As a result of many of my prior multiple myeloma treatments, I am vulnerable to skin cancer. In the past five years, I have had melanoma on my leg and several squamous lesions on my face.

During the "blue light special," an ointment of Levulan (aminolevulinic acid) was first applied to my face. Then a special blue light – which, by the way, is not a laser – was used to activate the drug. This procedure removes actinic keratoses, pre-cancerous lesions, on my face. Afterwards I was required to stay indoors and avoid any natural light. Then my face responded with a severe, uncomfortable sun burn. I lost three days.

The following week, I woke up with fever, chills, and nausea. I felt miserable. A visit to my primary physician affirmed that I had influenza B. I lost a week. I thought this flu experience was particularly unfair because I did get the flu shot. The same thing happened to me last year.

By the time my fever dropped and I was able to eat again, I knew I needed to make an attitude adjustment.

After six years with this disease, I have learned that whining is only a temporary strategy with minimal benefits. Plus I knew through my husband’s valuable feedback that I was not pleasant to be with.

What helped to change my attitude was another camping adventure. Last month, I walked the salt flats in Death Valley, hiked in slot canyons in Utah, and saw fantastical panoramas of red sandstone, blue skies, and dark green forests of pinyon and other pines. Each day was a blessing.

Currently I am in remission. This is my first remission in three years. I have enough platelets and hemoglobin, which means more energy, and less bruising. My immune system is stronger.

As I celebrate, I reflect on the lessons of lost days.

Lost days always represent loss of control. Since I am a goal-driven person, I find letting go so difficult. But I can learn. I can just ride the day out. Perhaps watch old movies or listen to music.

I know that lost days will return. Maybe next time, I will whine less.