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.
Tuesday, October 16, 2007
Friday, October 5, 2007
Reckless behavior
I am not sure why, after staring death in the face for so long, I apparently find it difficult to take it easy. I guess I am just totally fed up with being “sick”. But just because I have been feeling good lately apparently doesn’t mean that I have a functional immune system.
I was sure that it was on its way back. I finished my first round of maintenance etoposide two weeks ago, with no symptoms other than a couple of tired days at the end. I was to begin the next round one week after finishing the first round, but my doctors and I agreed to wait a week longer than planned to give my white cell count could have time to recover from weak but viable (ANC of 680) to robust (~1500) before hitting it over the head again. Since the danger level is an ANC of below 500, and it had been a few days since my ANC was 680, I figured that I had some margin, and decided to fly out to rural Missouri to meet up with Sarah and see where she grew up. I even wore a mask on the plane, just to be safe.
After a day driving around the ranch and hanging out with the family, I got a sore throat, and then a fever that wouldn’t go away. My doctors sent me off to find a lab to do some blood work, and called in a prescription for prophylactic antibiotics to the local pharmacy. The nearest capable lab was an hour’s drive from the ranch, which is itself an hour and a half from the nearest airport. I figured that it was all overkill, and set out thinking that it was at least a good excuse to take a drive and see the countryside.
Three days later, I am still in the hospital. My ANC had mysteriously crashed to … seven. Not 700, seven. I had been bottle feeding baby calves with basically no immune system.
Finding myself hospitalized in Sedalia, Missouri was surreal. What was I DOING there? And wasn’t I done with this ridiculousness already? Giving my medical history over and over, endlessly getting stuck with needles, beds that make noise and move for no good reason, choosing between going hungry or eating “food”, constantly making sure that my nurses were washing their hands, relaying information to parents while trying to manage worry, and waiting… and waiting…. It was the twilight zone.
After one night and day of IV antibiotics, I felt great, and started trying to figure out how to get out of there. There was a range of opinion on when I could leave, with my oncologist in LA recommending that I just get home and be treated by people who knew me at a bigger, better medical center, the local doctor prudently advising that I stay until my counts had fully recovered, and my oncologist at Stanford splitting the difference. We pushed our travel plans once, and then again. How to measure risk, and balance it against comfort? Surely getting on a plane without an effective immune system was dangerous – it was probably the reason that I was in the hospital to begin with. But despite competent care (what are all of those doctors with heavy foreign accents doing in rural Missouri?), it just didn’t feel right to stay there, isolated from everything. I needed to get home. Feeling fine, having been more than 36 hours without fever, with negative blood cultures, lots of antibiotics coursing through my veins, and planning on going directly to the hospital on arrival, I ruffled not a few feathers by leaving AMA (“against medical advice”), put on an extraordinarily uncomfortable mask, and got on a plane home.
I am happy to say that the most dramatic moment of the travel day was being bumped up to first class – at least the Cancer Card hasn’t lost any of it’s magic. I checked into the Stanford ER at 10:30pm, and after many more needles, repeating the same story countless times, being strung up like a marionette with a dozen wires, and hours of waiting, and waiting, and waiting, I got into my room at 4am.
Thankfully, this ridiculous interlude has come to an end. I was discharged this afternoon with a fully recovered white blood cell count, and am blissfully without IVs and tape all over me, breathing the outside air, watching the fall leaves, and smiling.
I was sure that it was on its way back. I finished my first round of maintenance etoposide two weeks ago, with no symptoms other than a couple of tired days at the end. I was to begin the next round one week after finishing the first round, but my doctors and I agreed to wait a week longer than planned to give my white cell count could have time to recover from weak but viable (ANC of 680) to robust (~1500) before hitting it over the head again. Since the danger level is an ANC of below 500, and it had been a few days since my ANC was 680, I figured that I had some margin, and decided to fly out to rural Missouri to meet up with Sarah and see where she grew up. I even wore a mask on the plane, just to be safe.
After a day driving around the ranch and hanging out with the family, I got a sore throat, and then a fever that wouldn’t go away. My doctors sent me off to find a lab to do some blood work, and called in a prescription for prophylactic antibiotics to the local pharmacy. The nearest capable lab was an hour’s drive from the ranch, which is itself an hour and a half from the nearest airport. I figured that it was all overkill, and set out thinking that it was at least a good excuse to take a drive and see the countryside.
Three days later, I am still in the hospital. My ANC had mysteriously crashed to … seven. Not 700, seven. I had been bottle feeding baby calves with basically no immune system.
Finding myself hospitalized in Sedalia, Missouri was surreal. What was I DOING there? And wasn’t I done with this ridiculousness already? Giving my medical history over and over, endlessly getting stuck with needles, beds that make noise and move for no good reason, choosing between going hungry or eating “food”, constantly making sure that my nurses were washing their hands, relaying information to parents while trying to manage worry, and waiting… and waiting…. It was the twilight zone.
After one night and day of IV antibiotics, I felt great, and started trying to figure out how to get out of there. There was a range of opinion on when I could leave, with my oncologist in LA recommending that I just get home and be treated by people who knew me at a bigger, better medical center, the local doctor prudently advising that I stay until my counts had fully recovered, and my oncologist at Stanford splitting the difference. We pushed our travel plans once, and then again. How to measure risk, and balance it against comfort? Surely getting on a plane without an effective immune system was dangerous – it was probably the reason that I was in the hospital to begin with. But despite competent care (what are all of those doctors with heavy foreign accents doing in rural Missouri?), it just didn’t feel right to stay there, isolated from everything. I needed to get home. Feeling fine, having been more than 36 hours without fever, with negative blood cultures, lots of antibiotics coursing through my veins, and planning on going directly to the hospital on arrival, I ruffled not a few feathers by leaving AMA (“against medical advice”), put on an extraordinarily uncomfortable mask, and got on a plane home.
I am happy to say that the most dramatic moment of the travel day was being bumped up to first class – at least the Cancer Card hasn’t lost any of it’s magic. I checked into the Stanford ER at 10:30pm, and after many more needles, repeating the same story countless times, being strung up like a marionette with a dozen wires, and hours of waiting, and waiting, and waiting, I got into my room at 4am.
Thankfully, this ridiculous interlude has come to an end. I was discharged this afternoon with a fully recovered white blood cell count, and am blissfully without IVs and tape all over me, breathing the outside air, watching the fall leaves, and smiling.
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