I have been examining what new readers are reading on my blog. To my surprise, they are gravitating, not to my endless philosophical ramblings, but to my journey with multiple myeloma. Because I am in remission now, for almost four years, I don’t have much to write about it. However, I am working on a new book, a memoir, with a working title, How Cancer Taught Me to Swear: A Brutally Honest Journey. So, for the sake of these new readers, I am going to post an excerpt from this work, still in the rough draft state.

From How Cancer Taught Me to Swear, Chapter Twelve: The Doorway to Hell

The dialysis went as well as I expected, with the eternal hope that by lowering my blood potassium, the nightmarish twitching would cease.  However, during the procedure and for the rest of the evening, the twitching worsened.

The next evening, the nephrologists visited me after a busy day in their outpatient clinic. With a quick knock on my door and a couple of nurses in her tow, she walked in. I could see my diagnosis in her somber face, lacking only words to confirm the bad news. She flashed a quick crocodile smile and said, “Mr. Jones, we have the results of your labs, bone marrow, and kidney biopsy, and it appears… no, it’s certain that you have multiple myeloma.”

I heard Denise, who was sitting behind her, let out a soft moan, fall onto the foot of my bed, and start sobbing. I reached for her hand but couldn’t find it.

“What did the tests show?” I mumbled.

Knowing I was a PA, she spoke without her typical layman’s translation. “Your protein electrophoresis shows that you have a lambda light chain level of 3600 mg/L.”

“Remind me what the normal range is,” I asked.

“Normal is 5.7 – 26.3 mg/L,” she said.

I just stared at her for a moment, and she continued, “Your kidney biopsy confirms that’s why they failed, showing light chain deposition disease, and your marrow is 10% myeloma.”

I nodded.

I glanced behind her and saw Denise, continuing to sob, her gripping the bedspread. Watching her in distress overwhelmed me with guilt. A memory of me standing outside the security fence at Dubai International Airport, she inside, ready to board her plane for New York, we were reaching through the chain links to touch fingers… if only I had called it off then, saying goodbye forever, she would not be in this position of heartache at this moment, forty-five years later. Then, rather than her flying home to Minnesota and having to explain to a fiancée that “I’ve met someone,” perhaps the two of them would have married, never have left Minnesota, lived happily ever after, like a team of healthy horses into their late nineties. And for me? I would have gone on to Pakistan, where I would try my best to forget her, if only. I would then have lived my life as a celibate, monk-like, and when cancer came a calling at age sixty-three, I would have no one to hurt with my curse, but myself. Not a wife and five children, whom I loved beyond comprehension and whom I had brought one of the greatest heartaches they would ever have to bear. Yeah, I had brought this to her. To them.

I looked at the Nephrologist. “So, what’s the plan?” I mumbled.

“We’ll be turning you over to the oncology service, as you will be started on treatment as soon as possible. They should be here later this evening. If they can’t see you, their nurse will be here in the morning, and they will see you tomorrow evening. I spoke to them, reviewed your labs, and they do want to proceed with a plasmapheresis program, once a day for five days, to reduce the amount of the free chains as quickly as possible.”

She typed on a laptop for a moment and then turned back to me, “You know,  you probably hadn’t had symptoms of renal failure because you were in such good shape, running five miles and climbing your mountain, each twice a week. Most people come in much earlier because they have all the classic symptoms.” Had my training for Greenland been a curse?  She added, “You know, you are lucky because with a potassium level as high as yours was, it would have killed most people, but because your renal failure had been gradual over months, allowing your body to adjust to the toxic level slowly, you survived.”

While I wanted to know everything, I also wanted the woman and her entourage to leave my room so that I could hold Denise and we could cry together.

I had said that one of the reasons that I had not seen a provider sooner was that not knowing with certainty that I had ALS gave me space for denial, and it was like Schrödinger’s Cat, a cat in a box that is neither alive nor dead until the box is opened. But now the box was open, not only was the cat found dead, but it wasn’t even Schrödinger’s.

Forty percent of American women and forty-two percent of men will get cancer before they die. That rate is increasing over time, as other diseases are controlled and people are living longer, having a greater chance of developing cancer. Carcinophobia, the fear of getting cancer, is a disabling dread for only a few people, but it rests in the back of the minds of most. Each time someone feels a lump or bump under their skin, they worry, “Is it cancer?” Each time a woman gets a Pap smear or a mammogram, each time a man receives a PSA or prostate exam, or each time either of them has a new spot on their skin, just for a second, the image of them suffering and dying from cancer floats through their mind.

In Greek mythology, Karkinos (The Giant Crab) lived in the lagoon, Lerna. When Hercules was in a battle with the nine-headed Lernaean Hydra, the goddess Hera sent Karkinos to bite Hercules’s foot to distract him. Hercules stomped the crab to death with his heel. Hera, out of respect for Karkinos’ valor, put the dead crab in the sky as a constellation, which we know as Cancer.

In astrology, the zodiac sign of Cancer represents the period immediately following the summer solstice, after which is the decline of the sun’s presence, and the Janua Inferni (doorway to hell) through which the human soul descends into the material world. The doorway to hell, in my opinion, is a suitable name for the disease of the same name.

Hippocrates, the ancient Greek “Father of Medicine,” gave the disease cancer its name in the 4th century BCE, using the Greek word karkinos because the tumor’s spreading blood vessels resembled the mythological Karninos’ legs, a term later translated into Latin as “cancer” by the Romans. Those blood vessels that surround solid cancer tumors are not just a coincidence.

Cancer is so evil that it creates its own blood vessels to feed its rapid growth in a process called angiogenesis. It is akin to the monster Taotie in Chinese mythology, with a voracious appetite that ate everything in its path. Some of the chemo drugs, including a common multiple myeloma drug, lenalidomide (Revlimid™), at least work in part by blocking angiogenesis.

Lenalidomide is a more potent version of the nausea drug thalidomide, which was taken by pregnant women and caused them to give birth to armless and legless babies in the 1950s and 60s. The reason that thalidomide caused these birth defects is because of its ability to block the formation of needed blood vessels to support limb growth in the fetus.

I took lenalidomide for three years. Because of its high risk for those serious birth defects, each month you must go through a deeply personal interrogation, my paraphrase, “Yes, we know you are married to a wonderful woman who has gone through menopause, but have you also been having sex with a younger, fertile woman without wearing a latex condom? Or have you given her any of your lenalidomide tablets to take for some strange reason?” Or in other words, “Are you a freakin’ lunatic… this month? And, if you have participated in the aforementioned behaviors, cancer is not the greatest threat to your life… but your care-giving wife.”

The last thing the kind ED physician said, as she buttoned me up in the back of an ambulance, “Mike, you’re not out of the woods yet, your life is still in danger… but take care.” She had given me the choice of being sent by helicopter or ambulance to Seattle, where there were more resources, or north to Bellingham, and I chose north. It would be much easier for Denise to visit me in Bellingham and return home at night to sleep in her own bed than if I were in Seattle.

It is strange, but a couple of months later, I learned that the very kind physician, who had sent me off to Bellingham after giving me life-saving care in her ED, her own husband had been diagnosed with life-threatening colon cancer in his forties. I just hoped that his medical providers had treated her with the same compassion she had shown Denise and me.

Mike