Remember Love Canal?

If you came of age in the 1970s or earlier in the United States, you surely re­mem­ber Love Canal.

Love Canal was a neighborhood in Niagara Falls, New York, built atop a chem­i­cal waste dump that had been closed and covered with dirt in the early 1950s. An elementary school was built first, followed soon by the houses.

Even though residents soon started noticing odd smells and oily sub­stances leaching up into the play­ground, it wasn’t until 1976 that the dump, after unusually heavy rains and winter weather, gave up its con­tents and everyone realized there was a crisis.

As the waste barrels continued to oxidize, disintegrate, or break underground, the chemicals rose to the sur­face and made their presence known. Love Canal was a cancer cluster, a birth defect cluster, and is still considered one of the worst environmental disasters in America.

So what’s Love (Canal) got to do with it (myeloma)?

I saw my oncologist in early April after finishing my second full course of Revlimid ^[1] (lenalidomide). Re­spond­ing to my laundry list of side effects, my oncologist had tweaked my initial course of treatment by lowering the dose to 15 mg from 25 mg and giving me two weeks off instead of the standard one between courses. This was my follow-up visit after the tweaks.

The result on the myeloma front? An IgG (immunoglobulin G) of 1,600, the first time it has fallen within “normal” parameters in a long, long time. In short, wow!

So why am I thinking of Love Canal?

The way I will continue to keep the myeloma in check is to swallow a toxic capsule daily for 21 days in re­peated cycles. I have become my own chemical waste dump.

There is no question that Revlimid is a powerful drug, both for better and for worse. It has extended the lives of countless myeloma patients. For many, and I may be among that throng, it has been a wonder drug.

And yet it is a toxic drug. Even with the lower dosage, I watch the side effects building as the toxicity in­creases in my body. When a friend, rejoicing in the good oncology news, asked me how long I “have to” take Revlimid, I replied, “Until it stops working or kills me, whichever comes first.” (Is it just me, or is there some­thing seriously askew in that reply, and even more askew in my thinking and saying that?)

Not unlike someone living near a chemical dump, I worry about the cumulative impact of Revlimid over a long period of time. My list of medical issues, some related to Revlimid, some perhaps not, continues to grow. Fellow Myeloma Beacon columnist Arnie Goodman wrote in his March 2012 column ^[2]: "Multiple mye­lo­ma takes its toll. A physician once told me that between the disease itself and the treatments, it wears you down. I am certainly not what I was six years ago."

Me neither, now almost nine and a half years into my life with myeloma. Add Revlimid, and I doubt I will be the same in six months, let alone six years, as what I am now.

Several columnists have recently written about the uneasy alliance between treatment and quality of life, and treatment and life itself. I think I have a sense of when I would stop treatment, but I am also acutely aware that I have yet to have to make that decision.

That day will come. And in the meantime, I will go on with Revlimid, creating my own internal Love Canal.