Sunday, May 9, 2010

Balanced, but Not at Ease

I find little comfort in the fact that the rock has been balanced on its point for ages. Firstly, it can't move or be moved without a shattering fall resolving into uncountably-many microscopic, glass-like fragments. Despite the obvious capture of kinetic energy along with the illusion of a freeze in time, a slow, inexorable deterioration of the balance of forces is occuring. Eventually, balance will be lost and the rock will fall.

My reduced intensity allogeneic bone-marrow transplant from a matched but unrelated donor is at the same time in a similar, frustrating, and dangerous state of balance. The amount of cancer in the blood (light chains of plasma cells broken off from too many malignant plasma cells) is astronomical, so high that it has to be treated (reduced). But treating the cancer at this point requires high-dose dexamethasone, the only known drug to still be effective in reducing the cancer ("tumor burden"). The risk is that dex lowers the ability of the body to resist the various viruses that need to be dormant for the transplant to succeed (e.g., not kill me). Too much cancer floating around impedes kidney functionality, which raises the specter of tumor lysis syndrome. Treating the cancer threatens reactivation of the viruses that kept me in hospital for seventeen days this year already.

Probably we will restart arsenic trioxide shortly. It may work on the cancer, it may not, but there is little evidence in the literature of a likelihood of its awakening the viruses.

How frightening being in balance can be! We have to shave a bit off of one side of a system that has found it's own natural equilibrium. Meanwhile, every day that passes without proceeding to transplant is one day closer to the possibility that the option will be foreclosed.

Otherwise I seem to be doing better every day. I'm a little stronger despite the dex and my kidney functions are improving slowly. If treating the cancer improves these functions, which have never before been troublesome, perhaps we can proceed.

Meanwhile, I haven't been able to talk to you because Google, which owns and operates Blogger, decided to shut down the kind of blogging ("FTP blogging") I had been doing for more than a year. In my confused state, or their confused state, I blew the conversion. I don't know if any of my subscribers will receive notice of this post. Please leave a comment below if you received some kind of notification, or discover a problem with past posts that I should try to fix.

8 comments:

  1. Got the Facebook link, Lonnie. Good luck with the transplant. Keep on posting, please!

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  2. Dear Lonnie,
    I am very happy to hearing from you!
    I didn't get any notification of your post in my email, but I got the facebook link too! I hope you'll get better every day! Our thoughts and hopes are with you!

    Take care,
    Olga

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  3. I was so pleased to see the FB message and link to your blog. Have been wondering how things were going for you. Hoping the treatments your docs decide to go with will work well for you. My hubby has experienced the long hospitalizations with infections and his kidneys have failed and he's now on dialysis BUT, right now, he's feeling better than he has in over a year! I wish you well, Lonnie, and will look forward to your posts.

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  4. We have been waiting for news from you and so very pleased to read this post. We wish you every success with this latest treatment, with the balance and continue good drug management that is required to proceed. We are sending all positive vibes that all will continue well and that you will be quickly able to get to transplant. (btw I picked-up your message via facebook)

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  5. Lonnie -- Good to hear there is still something to be balanced! I got your blog back by going to the old link and clicking on it and then it "Poof!" transmogrified into this one today... I don't have a facebook link. I am intending that whatever is needed to get you transplant is happening now, and that you are continuing to have the elements necessary for the success of it. so be it and SO IT IS.

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  6. I have bookmarked your blog and check in on you about once a week. Today, the first time the blog did not come up, but second time it did. If anybody can do the balancing act, it is you. Sending good vibes for balance.

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  7. I found your new Blog via Facebook-I was hoping against hope that the the transplant would go through smoothly. You were once going to name your children Scylla and Charybdis. I fear that Sisyphus is the myth that is prevailing.

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  8. The new Profile photo shows what the results of love in your life brings to you.... best to the both of you - and continued good intentions for the "procedure."

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They spam, I moderate. When you send a comment, it will disappear for a bit until I am notified. It hasn't been eaten. On the plus side, I can now reply to questions or suggestions, if you have any, in the comments!