Sunday, March 27, 2011

I Take It All Back!

From August, 2010 to today. Click on Me.
Once upon a time, I understood my labs well enough to know what they meant and, together with past data as shown on charts like this, where I was going. This is the best way I know to chart a course through the crises of cancer.

This chart plots my light chains (kappa, lambda, and the ratio of the two) from last August to last week. If the red line, which represents my tumor burden, resembles a roller coaster, I very much feel as if I've been riding one. On October 13th, I was clearly rolling down a steep slope toward remission. If I straight-lined the descent into the future, I would be in remission by Thanksgiving! The ordeal of the allogeneic transplant was giving me my life back!

Except it didn't. Instead, the red line climbed sharply upward. By Thanksgiving, my Freelite blasted through 53.8 and I was shopping for a cemetery plot. The transplant had failed, or so I thought, distraught. (Lonnie, plot, thought, distraught? Well, as they say, every writer is a failed poet.)

Yet the next measurement showed a steep decline, just as if the coaster had gone over a peak and was plummeting deliriously downward. By January 24th of this year, the cancer had dropped to 16.4. Well, I thought, the previous peak was a meaningless hiccup. The war between my new immune system and the ever-evolving cancer was whipsawing me between victory and defeat. Again, I convinced myself that the chart was showing me on a path to remission. Finally, after setbacks, my immune system was beating the cancer!

Until one month later, to the day, when the coaster jerked upward again, flattening my insides. At that point I gave up trying to prognosticate. I've been charting my myeloma for many years, always knowing where I was and where I was going, but what I see now is unpredictable. An allogeneic transplant put me on a whole different ride, one alternatively elating and terrifying. The techniques I had developed to master the inner game of cancer were no longer useful. I am hurled up and down, back and forth, expecting at any moment to be throwing up all over myself.

Yet, last week, a month later, the numbers went the right way again, with kappa reaching its lowest point in several years. At the same time, the rest of my markers, which aren't on this plot, were all good. Alkaline phosphatase, for example, is again normal, a clear indication that my bone lesions are stable.

What am I to think? How do I find peace of mind on this uncertain, torturous, terrifying course?

So I had Excel, which does the charting magic, produce a trend line over the kappa data by linear regression, the result of which is the straight black line on the chart. A trend line reduces complex or confusing data to a simple but often usable representation. In essence, it replaces the ups and downs of the roller coaster with an equivalent, smooth path. I like the analogy to a carnival ride because overall a coaster is always descending despite its temporary upward swings. To briefly change metaphors, a trend line plots the forest over the trees.

Neither elated nor depressed, I am comforted by the obvious relevance of the trend line. It says to me, regardless of the wild variations, there is meaning in the numbers, and that my new immune system is winning the war even though it has lost a few battles. The terrifying ride may have been worth it after all. (OK, Lonnie, rampant alliteration and four metaphors in one post — storms at sea, roller coaster rides, forests and war?? Enough already!)
My Life


  1. Roller coasters make me throw up... and the prospect of riding one is daunting, to say the least. The one you have on display is positively terrifying! But I'm still sitting in one of the seats, riding along with you, cheering every success, booing at the setbacks... and intending as always for every little good cell to be healthy and well and doing what good cells do, for the highest and best good of all concerned, so be it and SO IT IS!!

  2. You are amazing, Lon! I am possibly looking at an allo in the future. I have eight siblings and my transplant physician is confident that I may find a match among one of them. Since my relapsed MM is holding steady (my IgG Kappa numbers are rising but the m-spike is holding steady), all treatments are on hold. I prefer another transplants, whether allo or auto, over the chemo. I hate the PN and Velcade, Thalidomide and Revlimid will exacerbate my I am following your journey closely. Thank you so much for sharing!!!


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