Dr. George called me right on time this afternoon and we had a 15-minute discussion of our options. First of all, we don’t know the whole story yet about my creatinine level. There is every reason to believe that it will normalize somewhere at or near the 1.8 baseline we had going into the HD-IL2 therapy we had beginning about four weeks ago at Duke University Hospital under the ultimate care of Dr. Michael Morse. Two weeks ago, my creatinine reading was at 2.3 and trending downward. So, not so far off of what we’d hoped for.
Regardless of whether or not it goes back to the baseline, I will not be able to have any further HD-IL2 treatment at Duke. Dr. Morse had effectively put the kibosh on that. His reasoning is that it may not be safe to continue. I was thinking outside the box during my conversation with Dr. Morse yesterday and posed this question: “What if when we scan the middle of October, we find that I’ve had a great response to HD-IL2 and a continuance is warranted? What if we go forward and I sacrifice my “good” kidney for the possibility of a complete cure and deal with dialysis until I can get a transplanted kidney?” That discussion seemed to make Dr. Morse pretty uncomfortable and he said he’d be glad to refer me to some other HD-IL2 program, but that he wouldn’t undertake that scenario with me. (Note Sandy Gunnels’ remark on my previous post. She had the same question.)
I talked about that with Dr. George today and he agreed with Dr. Morse that any treatment program that might ultimately irreparably damage Strainer wasn’t a smart thing to attempt. Here’s what he did propose: We’re going to check my creatinine this week and again in two weeks. That gets us to mid-October, the magic six-week mark when a CT scan will determine whether or not the HD-IL2 did me any good. If I’ve shown a measurable positive response, he will refer us to NIH (National Institutes of Health) in Bethesda, MD where he knows physicians that would likely be willing to undertake a more agressive HD-IL2 treatment regimen that would still be safe for my kidney.
I don’t think undertake was a particularly rosy choice of verbs, now that I think about it. “Attempt” sounds so iffy. “Administer” sounds too Nazi-ish. “Dispense” sounds too pedestrian. So, “undertake” it will remain. I digress….
If the mid-October scans prove the HD-IL2 to be inconclusive or ineffective, then we’ll likely opt for six or so months on a tyrosine kinase inhibitor (oral chemotherapy) pill therapy and then, according to Dr. George, “consolidate” the tumor burden by doing surgery to eliminate the left adrenal gland and get rid of the two small tumors in Strainer.
All that medical mumbo-jumbo to say this: We have a plan in place that will address whichever scenario we’re presented in about three weeks after the scans. I still have options — maybe good ones — that could extend my life and protect my quality of life.
My outlook has taken a good turn upward today. I’m happy to report that. During my funk yesterday I decided on the title of the blog post I’ll have to write if I find that all my options are gone and that I’m riding that bobsled on the slick ice of my last days. If you see a post titled, “Circling the Drain,” then you’ll know I’ve emptied my gun, like those poor red-jacketed soldiers in the movie, “Zulu,” and that I’m about to be overrun and out of luck. I hope I’m ninety years old and a large pain in my sons’ asses when my arthritis-twisted fingers have to type that title.
Until then, we press on, optimistic about our chances to beat this and determined to write my way through it as honestly as possible. Thank you for the support, the concern, the love and the morbid curiosity that has delivered more than 105,650 page views of this blog.
By the way, if you’d like to know how powerful a blog can be, jump over and Google “Dr. Dan George” right now and see where my blog lands on the list. I met Dr. George this past January and during January I posted my first blog post that mentioned him. Now, since January, my blog sometimes appears at the top of the list when you search his name. Incredible!