My Christmas lump of coal

On the eve of Christmas Eve I had a little too much egg nog with brandy. One thing I have learned over time is that alcohol really does thin the blood, so to speak. Indeed, studies show that low hemoglobin can accompany chronic alcoholism. My excuse for low hemoglobin is autoimmmune hemolytic anemia resulting from my CLL (though if life keeps getting more stressful I may decide to add chronic alcoholism to the list).

Hemolysis, in which the body destroys its own red blood cells, is the thing to watch for in AIHA. It can come on suddenly, and over time I have become adept at looking for the signs and signals. Catching hemolysis early on is essential to keeping it in check. The more it begins to snowball, to use a seasonal metaphor, the more it can get out of control, requiring tougher steps to control it. Oh, and there’s that little thing about putting your life in danger as your body runs out of red blood cells. You never want that particular Elvis to leave the building.

If there is a decline in my hemoglobin, the first thing I usually notice is a pounding in my ears. What I’m hearing is my heart pumping away, and when HGB is really low, it’s like a marching band. When HGB is just a bit low, it’s like an occasional lone drummer offstage. When HGB is normal, I don't hear it at all.

Well, the Little Drummer Boy was busy as I tossed and turned in bed a few hours after placing my nog-drenched frame in the prone position. The easiest way for me to tell how my HGB is doing is to drink a lot, then go to bed. That’s just one of the tricks of the AIHA trade that your doctor probably won’t tell you about.

Sure enough, blood tests the next day -- I have that holiday miracle, a doctor who answers her cell phone on Christmas Eve -- confirm that I’m hemolyzing again. On Dec. 2 all my red counts were normal. Twenty-two days later the HGB was down to 11.6 (from 13.5), the MCH and RDW were high, and overall RBC was 3.66, down from 4.47. My LDH, which measures turnover of cellular activity -- as in red cells being chomped by macrophages -- had gone from mid-normal to high-normal, and total bilirubin was now at the very top of normal, meaning debris was moving through the liver.

Results of the Direct Coombs, haptoglobin and reticulocyte tests will have to wait until Friday or Monday. But based on past experience, what we have here is active hemolysis, not quite out of control but definitely past the Miss Manners stage of fine macrophage dining.

So, hello Decadron. Hello, doctor next week. Hello, chemo very soon.

And hello, CLL curveball. As they used to say on Monty Python, “Nobody expects the Spanish Inquisition!” We CLLers with active disease had better learn to expect it at any time, and that includes holidays.

Ataraxia

I ran across the word “ataraxia” a while back and I liked it. Not only for the way it rolls across the tongue (at-uh-RAK-see-uh), sounding like so many things: an exotic city on a distant continent, a make-believe world conjured by a child, a potent drink that promises to liberate the soul.

No, I also liked it because of its meaning, from the Greek ataraktos, or “not disturbed”: A state of freedom from disturbance of mind. Calmness untroubled by mental or emotional disquiet

Faced with the ever-shifting challenges of the “new normal” that is life with chronic lymphocytic leukemia, ataraxia is something that we patients and caregivers often find lacking in our lives. We crave calmness of mind. Every bad test result or new symptom is a reminder of just how far we can find ourselves from peace and serenity.

It is therefore no surprise that ataraxia is hard to come by in CLL, as the Mayo Clinic has officially found -- I do believe this disease would present something of a challenge to the coping skills of the Dalai Lama. But nothing is impossible, and I sometimes find vignettes, little triumphs of the spirit that show ataraxia is possible in the face of adversity:

A caregiver, whose husband is in ill health and responding poorly to chemotherapy, wakes up to find that her cow broke through a fence and ate her carefully-tended garden. After she cries her eyes out, she and her daughter go out and buy new plants and, together, start all over again. In replanting, she finds strength.

A patient, who has bad prognostics and is undergoing tough chemotherapy, feels like crap. But he loves to cook, and he cooks a dinner for his wife and their two closest friends. At the end of the night they shoot off fireworks.

A man in his 50s, having fought aggressive CLL with aggressive therapy, including a failed stem cell transplant, rides out into the desert on his motorcycle and plays his guitar, composing songs amid the windswept rocks.

A young mother, whose disease has transformed to something worse after chemotherapy, is in hospice care at home. She is in pain, lymph nodes are pressing on her, but her husband buys her a new coat and the two of them and their three-year-old daughter go to the beach and play in the sand and the waves.

There are more stories like these. I like to keep them in mind. Those of us touched by CLL quickly learn that life is fragile, but these stories also tell me that the will to live is strong and that we are resilient. That at times, even in the worst of times, we can reach ataraxia.