TOPIC 1: PERSPECTIVE
|Click above for a bigger view
So, thirteen months after my allogeneic transplant
, how am I doing? It all depends upon how you look at it. I update this chart whenever I get new labs: looking at the data in this way emphasizes historical trends; reveals the “big picture”; at times, it even offers a glimpse of the future. (Unfortunately, learning to use Microsoft Excel to produce these charts can be maddeningly difficult. It’s worth the trouble, though, if only to garner the admiration of the many who have tried and failed.) The red line is the most important for me to watch because I have light chain disease
of type “kappa”: in my case, it’s the only useful marker obtainable through ordinary lab tests. (The terms of light chain disease, kappa and lambda, sound offputtingly mathematical, but the first initials of the last names of their discoverers are—wait for it—”k” and “l”.)
The chart begins one month after the transplant began and extends to last week. Normal, for kappa, is 1.94 mg/dL. My most recent measurement was 35.9: am I in trouble?
|The Long View
Same data, but beginning two years ago. I’ve marked the day Ivonne and I married and the day my transplant began. For the record, the high point on the chart is 2140 mg/dL, a positively frightening number—it’s amazing to me that I could have tolerated such a high tumor burden for as long as I did, and, because I had virtually no immune system, that I didn’t die from an opportunistic infection. This longer-view chart is far more reassuring than the first one. From its perspective one can easily conclude that the variations seen in the first chart are, as engineers say, “in the noise”: my condition has not significantly changed since the transplant. I am “stable.” At the moment, I have nothing to worry about. Should this situation change—and it might never change—I still have options (lenalidomide
, which helps the immune system fight the cancer without being damaged by it; donor lymphocyte infusions
, which rev up the immune system’s ability to attack).
This week, then, I sent out my first job-hunting feelers: one of my four teenagers needs braces; all four need to be sent to college; they eat their way through more than thirty eggs a week and countless gallons of milk; and don’t even talk to me about iPads! They may have come from one of the poorest cities in Mexico (Tijuana), but, boy, did they ever pick up the technology in a hurry—dammit, niños, read a real book!
What’s going through my mind? After a long session of pulling the African Queen
through dense reeds, Bogart discovers that he’s covered with leeches, which he hates. Frantically, he and Hepburn use salt to remove them. Then comes one of the poignant moments in cinema: he realizes that despite his disgust he must go back into the water if they are to survive. Tellingly, Hepburn looks at him with a heavy heart but does not protest: she’s no fool.
TOPIC 2: HAT TIP
Hat tip to Dr. Rahul Naik for deciding to go into myeloma research! He’s working on a way to make Velcade (bortezomib
) more effective.
TOPIC 3: FAMILY ADVENTURES
The whole family went to the Zoo last week. You might enjoy this picture of us. I really need to buy shirts that fit!
|Nahomy, Jared, me, Ivonne, Sharon, and Ruben
Sharon and Ruben are spending a few days with their friends in Mexico. Jared decided to stay home, telling her mother, “I’ll stay home because my role in the family is to make Lonnie’s life miserable.” She teases me constantly: she really is adorable.
TOPIC 4: THE BIRDS (THINK HITCHCOCK)
The bird feeder was up only one week before the scrub jays found it! They may be bullies, but they are fun to watch. Also, the first raptors have appeared: a peregrine falcon was spotted by my children eating one of the birds I’ve been feeding. My cat routinely splats herself against the glass door by the feeder trying to catch one—in pig latin, she’s otnay ootay ightbray. My feathered friends are going through twenty-five pounds of black oil sunflower seeds a week. They make me smile.
TOPIC 5: FOURTH OF JULY MUSING (BELATED)
Not like the brazen giant of Greek fame,
With conquering limbs astride from land to land;
Here at our sea-washed, sunset gates shall stand
A mighty woman with a torch, whose flame
Is the imprisoned lightning, and her name
Mother of Exiles. From her beacon-hand
Glows world-wide welcome; her mild eyes command
The air-bridged harbor that twin cities frame.
“Keep ancient lands, your storied pomp!” cries she
With silent lips. “Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!”
These words, our sacred, national words, have graced the Statue of Liberty since October 28, 1886. This Fourth of July I couldn’t help but admire those who so long ago held this vision of America. Many cite these words to make the case for American exceptionalism. Some say the idea that we are a welcoming, big-hearted people has always been a myth, but I don’t believe that despite recent events. We have always been the most diverse of nations, and this diversity has blessed us with unparalleled strength and resilience. In time the new immigrants will be absorbed, as earlier waves of immigrants have been absorbed, and we will be even stronger because of it.
TOPIC 6: MUSCLES!
Or, rather, the lack thereof. As I’ve mentioned before, I lost 55lbs of muscle and fat during the allo. When I finally came home I had little of either. That’s not an exaggeration. There wasn’t much I could do for myself: I couldn’t put on my clothes, take a shower without risking my life, go to the bathroom, or move from my bed to a chair. I couldn’t put on my shoes. I couldn’t roll over on my stomach. After the allo I had nothing—except my life.
|Don’t I Wish….
Now I’m hitting the gym three times a week, and, after the first time, going by myself. I’m doing what an experienced lifter does, but with almost no weight. Yet I’m getting stronger and feeling better (I prefer weight lifting to psychotherapy: unless you’re terribly neurotic it works faster). My greatest disability is the lack of strength in my legs; however, I can notice an improvement already. I very much hope I don’t hurt myself. I avoid any exercise that compresses my spine, but if I use my damned head I can work most of the other exercise machines. I can’t warm up with the rowing machine, though: I’m afraid if I get down that low I won’t be able to get back up without help.
TOPIC 7: BIG HAT TIP
I am alive today because of the determined efforts of Dr. James Mason of Scripps Clinic. The allo was his idea. There were numerous complications in addition to the medical ones, many of them administrative, many involving insurance, all of which he handled adroitly. Recently he became Chief of Staff. He well deserves it. Many of my other doctors have been absolutely first-rate—Dr. Joel Bernstein has taken excellent care of me for thirteen years—but, in the end, I continue to breathe because of Mason.
I’ve been the undeserved beneficiary of many miracles, most of which I’ve chronicled here; but the biggest factor in my survival might very well be the chance consultation with Dr. Mason years ago. He taught me about my disease and its treatment: he did not have to do this, but for years he made time to answer all of my questions —and, as I am sure he would attest, I usually had a boatload of questions. He is the only person who has ever made me regret not considering a career in medicine.
I am proud to call Jim my friend as well.