Moving on. ... ?

After a couple of months of limbo, I am finally moving on. I’ve decided that it’s time to get back to LA, and move forward with my PhD for the time being. It was just too soon to start school again. I need time to review all the things that I have forgotten, and get my life back together, before jumping back into the fray. I think that lab work will be a good transition – I can make my own schedule, more or less, and will have the space to get back on my feet while moving forward with my degree. I still want to find a way to do some traveling and international health work, but I think that it makes sense for me to let my immune system fully recover before traipsing around the world. Maybe next summer. I am really looking forward to regaining independence, and having an identity other than being sick.

On the health front, it’s déjà vu all over again. Einhorn, the world expert who treated me in Indiana, told me when I left that there was no need for any further treatment, but Srinivas, my oncologist at Stanford, thinks that in principle, I am in the same place that I was in April, before my tumor markers started going up again: I still have a bunch of goo in my abdomen, and with no way of knowing whether it is merely dead, fibrotic tissue, or hiding some teratoma which could become malignant in the future, it is not unreasonable to reconsider surgery to remove it. Last time around the Stanford surgeons (Norton and Presti) were confident that they could remove it without any significant collateral damage, but the USC surgeon (Skinner) was adamant that the surgery not be done, because in order to eliminate everything that could be dangerous, he would have to remove my bladder and rectum. My various medical teams are arguing about it now. Once again, I have to plan on the best case scenario, because planning for the worst is not only terrifying, it prevents me from getting on with my life.

Living with hearing loss has recently gotten a lot less frustrating, due to some pretty amazing technology. I finally admitted that I had a problem, and that wearing hearing aids was better than being disconnected from the world. Despite the annoyances (there’s something IN MY @#*&ing EARS!/can’t lie on my side/feedback screams when people hug me/needing to remember to take them out before getting in the shower/is it raining hard enough for me to have to worry about getting them wet?/the world sounds sharply digital instead of sensually analog), they have dramatically improved my quality of life. I am functional again! Only very rarely do I have to ask people to repeat themselves, and I no longer have to read lips to understand a conversation. I want to thank you for tolerating my disability for so long, and I am happy to say that everyone can stop shouting now.

Despite the fact that it is still not clear how much of the incredibly high cost insurance will cover, I decided that there was no point in trying to save money on something as fundamental as my connection with the world, and got the best hearing aids out there, called Oticon Epoq. They are tiny (though not tiny enough… I want implants!), and feature-packed. They wirelessly communicate with each other, so that when settings are changed on one, they are also adjusted on the other. They also compare incoming signals and do some fancy processing to enable better sound localization than hearing aids that function independently. In movie theaters equipped with devices for the hearing-impaired, my hearing aids are supposed to pick up the signal. Instead of going to Customer Care to check out a pair of headphones that will merely make everything louder, the soundtrack will get put through my customized equalizer settings before being piped into my head. But the best part is that I’ve basically got the world’s best Bluetooth headset. I wear a thing around my neck that looks like an iPod mini, but is in fact a Bluetooth hub and microphone. When my phone rings in my pocket, I hear the ringing in my head, and I push a button on the hub to answer the call. It also picks up the signal from the Bluetooth transmitter I got for my iPod, so I can listen to music wirelessly. I’m pretty much a cyborg at this point.