Archive for May, 2016

posted by Amy on May 24

Last July I tried a sort of Hail Mary pass for my cancer treatment. When I was first diagnosed I got great results from a “taxane,” an old-school chemo drug that eliminated both all my body hair and the cancer metastases in my liver. But then cancer popped up in other places, and the next four years were a game of inches. trying to achieve the metastatic cancer patient’s “best” outcome: good cancer control with acceptable side effects. By the end of June, 2015 there had been several scans with “mixed” results, but they seemed to be going in the wrong direction. So we decided to try another taxane. I was on it for almost half a year. There were numerous side effects, including infections, pain, some depression, and other stuff. I got so I dreaded the treatments. I had my last dose of the “strong” stuff on December 18, and since then I’ve just gotten targeted treatments with minimal side effects.

My October scan was fantastic. Almost all the places that previously “lit up” were quiet. The word the radiologist used was “resolved.” I got really excited. My liver lesions were “resolved” in late 2011, and they have stayed that way. Maybe the Hail Mary pass was panning out! Only my lower lungs were still showing cancer activity in October, and the lesions were smaller and less active. Then the January scan showed no new lesions, but the cancer in my lower lungs was slightly more active. Then a scan in early May showed more activity. Based on my personal definition of “stable” as “no new lesions, ” I’m still “stable,” because all the uptake was in previously-noted lesions. Does that mean my cancer is getting resistant to chemo? Is this the beginning of the end? Or is it just a “normal” kind of toggling back and forth? Should I jump on this with another kind of chemo? Or should I wait until I see new lesions? Or get into a clinical trial? Or what?

Nobody really knows. As my oncologist said, we don’t have a crystal ball to know what might be helpful and what won’t. She has a suggestion about what to try next. I’m not very charmed by the treatment schedule or the side effects. On the other hand, I’d be dead by now without the brilliant and caring medical professionals I’ve known. Their ideas and creativity and knowledge matter a great deal to me. In the end, though, I take to heart some things I’ve learned from others in the field: 1) if a new drug is going to work it will clear up a lot of cancer or a little. There’s no special urgency about switching treatments and, 2) “Progression free survival,” the interval before the cancer shows signs of increased activity, does not predict overall survival. We don’t actually know the end of this story until we get to the end. Logically it seems we should try for “no evidence of disease,” or at least “stable” disease, but empirically it doesn’t correlate.  I keep that in the back of my mind when I get to decision points like this.

No one knows how to cure me, so at this point it’s more art than science. At five years out I’m already an outlier. Almost 80% of the people with my diagnosis are dead within five years. At this end of the bell curve there’s no real standard of care. I comes down to art, and hunches, and trial and error. My personal goal is to stay alive long enough to be around when they figure out how to cure this. Short of that, there are a few things I’d like to do before I hit the acute, actively dying phase of this disease. I don’t feel death breathing down my neck just yet, but I know things can change quickly. I’ve seen it happen many times to others.

If the answer lay in just being too busy to die, I’d have that sewn up. One of my kids is getting married June 12, and  back when I thought I had “plenty of time,” I decided to make a dress to wear to the wedding. I have a pattern, and the material. I’ve cut out all the pattern pieces (but have not laid the pieces on the fabric, or cut it). That’s as far as I’ve gotten so far. I also decided to knit a wedding present. I am knitting, but I am starting to doubt I’ll get finished in time. Then there’s the PhD. I am studying for comprehensive exams, supposedly. I read a lot. Some of the books are even on my bibliography. Oh, and I help take care of a delightful elderly woman who recently started needing more care. And I’m a volunteer associate pastor at a little United Methodist Church, partly because they love me and need me, and partly because the work I do might help me get ordained.

And I decided to start dating again. Last month I put an ad on an internet site. I got a lot of responses, most of them apparently genuine and sincere. I have some new male friends, most of whom I’ve told I have cancer, but not all. I don’t really have an agenda. I thought I’d see who showed up, and take it from there. I’m pretty sure I don’t want another husband. I’m quite sure I want something authentic and meaningful. I enjoy smart, funny, passionate people. Maybe there’s someone like that with whom I’ll click. Nothing ventured nothing gained.

To my way of thinking, it would be much worse to die with everything all finished and wrapped up and indexed and finalized, not because I’m super organized (and I’m not) but just because I quit doing anything new. My whole life has been not just one but many works in progress. A substantial part of who I am is wrapped up in my attraction to possibility and potential. I have no idea where any of this is going to wind up. In any event I will leave some loose ends.

It would be far worse to sit around waiting to die and end up living another 20 years with nothing to show for it. Granted, that’s not a likely outcome for me, but that would still be truly terrible.

Edited May 26, 2016

 

 

 

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