Denouement

After the excitement of the past few posts, it has been difficult to get back to writing, because I am engaged in a less flashy, but in some ways, still difficult transition period. While the most traumatic part of the treatment is in the past (I hope), there is still much fallout to manage.

I am trying not to be too upset by continued hearing loss, but it is very hard to lose a sense. Part of the richness of life that I have always taken for granted is suddenly unavailable to me. I am isolated from the world, more so than I have ever been. I have difficulty participating in conversations other than with friends and family who agree (and then remember) to make an effort to speak loudly, to not cover their mouths with their hands, and to not expect me to be able to follow if we are not at close range in the same room. Without being able to read lips, night time has become even more quiet. Car rides are mostly solitary experiences – there is just something about the ambient noise that makes it hard to follow conversation. Transactions are frustrating – “paper or plastic?” becomes an embarrassing question when I have to ask it to be repeated five times. The other day I waited on hold for fifteen minutes, only to give up when the Member Service Representative finally did answer, because I couldn’t turn the volume up high enough to hear. I burn the onions because I can’t hear the change from the low bubbling burble to the higher, faster sizzle. Music is hard to deal with. The midrange is gone, and everyone sounds like they are singing off key. TV and movies must be watched with subtitles on. Though still unacceptable, I do think that my hearing is getting better. Achingly slowly, but better nonetheless. Nobody seems to be able to tell me for sure how much of my hearing will come back, or when. I have heard that hearing aids are decent these days, but I am holding out, hoping that my body will continue to bounce back.

I went to my tenth high school reunion last week, and ran into Ben Kaplan, who writes a blog about stem cell research. Ben has become very public about living with cerebral palsy. I realized when I saw him that I had always avoided him, because as a teenager, I didn’t know how to deal with his disability. Should I ignore it, so that he wouldn’t be self-conscious about it (as if anything I could do could have kept him from being self-conscious about it)? How could I ask about it, without showing that I was ignorant (as if not asking didn’t demonstrate the fact that I was)? I got a reality check in talking with him. Despite growing up with a disabled grandfather, I think that even I have sometimes subconsciously thought that the disabled were lazy, or stupid, or scary, or that they just wanted to be left alone, in order to justify my own avoidance of them. Losing part of my hearing has made the reality of living with disability painfully obvious to me – there are impediments that millions of people are dealing with all the time that the rest of us are unable to fathom, and being isolated because of them is the worst punishment that social beings like us can face.

In order to clean up any lingering renegade cells, I was supposed to have started maintenance chemo a month ago. I haven’t even started yet, though, because my immune system hasn’t bounced back as quickly as expected. Neutrophils, which are the body’s first responders to infection, normally number around 3500, and mine have managed to rebound (from zero!) to around 1800, which is enough to keep me healthy under normal circumstances. But if I were to start the maintenance chemo now, as two out of three of my doctors recommend, there is a high likelihood that my neutrophil count would fall below 500, which is the cutoff point for withholding further chemo. Not only would I not get the full dose of chemo, but I would be at risk for opportunistic infections and neutropenic fever, which landed me in the hospital for a week last spring. Also, from a theoretical point of view, it seems to me that potentially being forced to cut short a course of chemo would select for more drug-resistant strains if there are any, which would be less sensitive to the next round of chemo (the same reason that you should always finish all of your antibiotics!). On the other hand, if there really are any malignant cells lurking around my body, it would be good to kill them off before they gain a foothold. As my doctors readily admit, there is no data here, and once again I find myself in a medical grey zone where the proper course of action is unclear.

All of this of course affects whether or not I will be able to resume school again in mid-October. I am very thankful that the administration has been so supportive – they told me that I could start in October if I was ready, but that they would understand if I wasn’t, and a position would be open for me next year if I needed some time. In the meantime, I am working on editing a manuscript for Dr. Reynolds at Children’s Hospital Los Angeles, with whom I had planned to pursue my PhD before getting sidetracked, and exploring other options for how to productively and happily pass the time if I decide that I am not ready to start school in October. I spend most of my days debating what to do next, and despite the fact that I am not back to “normal”, I am happy to say that I am dealing with an embarrassment of good options.