Saturday, December 11, 2010

Angels and Demons

Click on Me

I had hoped to announce by now that I had achieved complete remission. No such luck. The chart above shows the results of all of the Freelite© tests I've taken since August. (The Freelite test gives a rough idea of the tumor burden, which, for myeloma, would be the number of malignant plasma cells in the marrow.) Clearly the chart demonstrates that my cancer (the grayish-blue line) has been stuck for months in the range of forty to fifty. If we throw out the low point, the curve is almost flat. High normal is 1.76 mg/dL, a value much lower than anything in the chart. If you click on it, the chart will become much easier to read.

Numbers this high normally tear people apart, but, as you will recall, before the transplant I saw kappa numbers in the thousands with no apparent damage. The current numbers are two orders of magnitude lower than before. What you are seeing is a war between the new immune system and the old cancer, according to one of my better doctors. If the new immune system weren't fighting the cancer, there would be an exponential rise in kappa (the line would be trending toward the vertical). Exponential rises kill.
The Battle for Asgard
There is the possibility I can live quite normally despite the high numbers. Except for this week's withdrawal from morphine, I'm already living quite normally. It takes a long time for the new immune system to become as strong as a native system, so the appropriate response now is watchful waiting. I suspect this means, in addition to Freelite testing, I will need regular CT-Pet scans. The last thing I need is to discover by a broken bone, surgery, and radiation that a response is in order.

On the other hand, if the Freelite number starts to rise rapidly, or damage is discovered, it may be time for a donor lymphocyte infusion (probably along with Thalidomide or one of its newer derivatives). In essence, I would get an injection of white blood cells from my donor, cells that are likely to recognize and attack the cancer. The downside is the high probability of serious graft-versus-host disease (which the Thalidomide is intended to mitigate).

In mid-October, the last time I dared to write about what the cancer was doing, I had just seen the dip in kappa to 21.10 along with much-improved blood work. My doctors and I were extrapolating that we would be seeing "normal" by Thanksgiving. When the number unexpectedly rose in early November, at first I was as stunned as if a lover had slapped me in the face. My bewilderment soon segued into deep depression as I struggled to get my mind around the meaning of this unhappy development. Was the mini-allo a failure? Had my fabulous good luck failed me? Was I once more in the End Game?

After many days of dark processing, I decided that, no, I'm not back in the End Game. There are things that can be done if the cancer spins out of control. I'm not being damaged. The numbers aren't soaring in the wrong direction. The only cancer-related problem I have is GVHD of the esophagus and the eyes — annoying but tolerable. My quality of life is good. I still enjoy perfectly ordinary days. However, the feeling I once had, the feeling that before too long I could completely forget I ever had cancer, is gone. I haven't beaten the Beast, but I am holding my own in a fight that, at the moment, is not difficult.

If I hadn't had the transplant, I would surely have died by now. The numbers were horrible and trending upward so quickly that even my cast-iron system would have failed. My life was severely impaired. When the transplant window opened, I jumped through it without a moment's hesitation. And I'm glad I did, even though I would much rather be looking at remission right now rather than mere stability.

There's one other plus. Regardless of what happens next, I attacked my enemy with everything I had. I went "all in," as poker people like to say, and I'm still here. Not only is there considerable joy in that, but I've traveled all the way to the apocalyptic end and have returned, bloody but unbowed. The bully has been faced down. There is nothing left to fear.

In the hospital, in my delirium, Ivonne witnessed an event I don't remember at all, an event I've held back until now. Apparently, a group of phantasms had come to my bedside to present me with a proposition. As I sat up to talk with them, they told me of a wondrous place, an Edenic, joyful land where I would be quite happy. They wanted to take me there. For a few moments, I tried to get up to follow them. Then, falling back into bed, I said, with a sigh, "No, I cannot come with you. This is not my time." Then I closed my eyes and slept.

Happy holidays.


  1. May your current struggle be rewarded with future success. Merry Christmas, Ruf, and a healthy and happy New Year to you and your loved ones.

    Isil and Anar

  2. Hopefully the new immune system gets its act together and whips the ass of the old immune system. It could still happen, could it not?

    Best wishes, and happy holidays!

  3. We are not giving up, nor should you as you inspire us all. Happy Holidays to you and yours:) P.S. We still will pray.....Lynne and Ralph

  4. It's not uncommon for these allos to take awhile to do their job. I've met people who have been "no evidence of disease" for years but it took months for the new immune system to get them there. Happy holidays!

  5. You have no idea how much I look forward to getting your updates ... it's your insight, and frankness, and courage

    much love

  6. Glad t hear you are hanging "tough" against the cancer. Allo transplants are so unpredictable. Best wishes for managing the GVHD.

  7. It is easy to feel low if you think you are not in CR (Complete Remission) but it is a demon of its own kind since success in MM treatments may not include CR but the patient can live more or less normally. Keeping your mind on a positive and upbeat track is essential as you well know and you have come so far that I know you can keep going. My relative had two autos that didn't work and an allo that finally did and no GVHD for almost a year. Now the GVHD is kicking in and kicking butt and the whole family is feeling challenged. Keep intending success on your terms and I align with you and I also intend a most joyous holiday season because after all, if you had followed the Etherics, you might be having a different kind of experience and you are HERE NOW... so be it and so it is!


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