Transition to “real” life is going smoothly. I have decided to make LA work for me, instead of constantly being annoyed about it. The key is that I now have a great bike (thank you dad!). The best part is that it has a rack with a quick-release shopping basket, so I can get to Trader Joes and back without having to get all worked up cursing at the traffic jams in the parking lot. I don’t have to worry about getting parking tickets on street sweeping days like my colleagues, because I can walk the four blocks to work at Children’s Hospital LA (though I did get a jaywalking ticket the other day – is the LAPD really wasting time making the city even less pedestrian-friendly?) I realized that the last time I could honestly say that I was in shape was my senior year of high school when I was running track and cross country, and so I am making a concerted effort to make use of Griffith Park’s trails and tennis courts, a short bike ride up the hill.
It is eerie living alone after being taken care of for so long, but also liberating. I feel like I have more free time now that I have a job than I did when I was just sitting around recuperating. Obviously feeling healthy has a lot to do with it – go stem cells! I also notice that more always seems to get done when there is more to do (duh). Mostly, I spend my free time reading, as I try to educate myself about the incredible complexity and dysfunction of the American health care system. I bounce between The Social Transformation of American Medicine, Understanding Health Policy, and Fixing American Health Care. I am also reading The Female Brain (clearly applicable to any endeavor), a collection of short stories by P.G. Wodehouse, and I just finished The Right Stuff. Add this to a few hundred megabytes of scientific articles about the relationship between sphingolipid metabolism and cancer, and it’s no wonder I’ve got a crick in my neck. Which brings me to one of the inconveniences of living alone – it's just not that satisfying to give myself a neck massage.
And now for the bit you are all really here for, the gory, scary, life-and-death part: no news is good news. We are still in surveillance mode, where hopefully we will remain for the next few years. I had another CT last week, which was thrilling as always. I really think that if they are going to make people drink pina colada-flavored barium glop before scans, they should at least spike it with rum. It would go down easier, and everyone would be so much more relaxed. Since everyone arrives having fasted for at least four hours, they wouldn’t have to put much in to get the party started.
Sunday, December 2, 2007
Tuesday, October 16, 2007
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.
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.
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.
Saturday, August 25, 2007
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.
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.
Tuesday, July 31, 2007
responses
Wow! Whoever said that newspapers were irrelevant in the digital age never had an article written about them. A huge number of people have written, both leaving comments on this blog, and via email. Many relate their own harrowing stories – it is a terrifying and sad thing to remember that I am not alone, that there are dozens and hundreds and thousands and millions of people whose lives are right now being touched by tragedy. The torrential outpouring of stories is amazing to me. Maybe it shouldn’t be, since I have obviously felt this same need to share mine. The urgency with which people have been sharing their experiences reminds me of something that we are taught in the first year of medical school, but which largely falls on deaf ears: how important it is that people feel that they are listened to and understood. The article may have been written about me, but this is not the reason that people have found it interesting. Its greatest value seems to have come from the fact that it provided a stimulus for others to express themselves.
As for me, I am relishing feeling better every day, though with the crisis averted, there is more space for rumination. A few entries ago I wrote about there being a clear path ahead. I am back in Palo Alto now, and in the calm of home I find that while there are fewer terrifying possibilities looming, there are many new and important variables that have sprung up, and that the path ahead is not at all clear. Will I be physically able to begin school again in the fall? Will I be emotionally stable enough? Is it more important for me to re-engage with school so that I can apply what I have learned to my studies and beyond, or should I take some time to reconsider my goals, and enjoy life?
(No need to weigh in all at once!)
As for me, I am relishing feeling better every day, though with the crisis averted, there is more space for rumination. A few entries ago I wrote about there being a clear path ahead. I am back in Palo Alto now, and in the calm of home I find that while there are fewer terrifying possibilities looming, there are many new and important variables that have sprung up, and that the path ahead is not at all clear. Will I be physically able to begin school again in the fall? Will I be emotionally stable enough? Is it more important for me to re-engage with school so that I can apply what I have learned to my studies and beyond, or should I take some time to reconsider my goals, and enjoy life?
(No need to weigh in all at once!)
Saturday, July 28, 2007
Tuesday, July 3, 2007
A HUGE sigh of relief
It is with great pleasure that I write this entry. I met with the doctor in charge of my care yesterday, and he announced with no delay that my CT scan was completely normal, and that there was absolutely no need for surgery of any kind!
Deep breaths all around. And then champagne!
I was shocked. Still am. It has been impossible not to be constantly cogitating around the infinite eventualities of all theoretical outcomes. To find myself lying awake at night, despite rather large doses of sleeping medication, working out contingencies for contingencies. And all of a sudden, there is an answer, a clear path, and not only that, the best possible one!
I have not yet made it into full-on celebration mode. For one, my body is nowhere near recovered. But more importantly, I am trepidatious about really letting go. At every turn for the past fifteen months, each time some doctor tells me that everything’s OK and I can get on with my life, the door has been slammed in my face shortly thereafter. Back to the hospital, and again in a gown, not a white coat. I want to believe that this time it’s true, that I can return to my carefully laid-out path, but I can’t help but be a little scared.
There is also a little matter of maintenance chemotherapy. In order to diminish even further the possibility of this crap ever coming back, I will be taking a low dose of etoposide for three months, starting in a month. Supposedly it will merely make me a little more tired than usual for a few days out of each month, but we’ll see about that.
Enough wet blankets! After the appointment, I immediately flew out to DC to celebrate. Washington, DC?!
I have tried in this blog to keep my personal life as private as I can, but to explain what the hell I am doing here, I am going to have to spill some beans. But only a few. Back in April, right in the middle of flying like mad around the country trying to decide where to get treatment, I attended the wedding of a dear friend in San Francisco. And we all know what can happen at weddings. There you are, hanging around for hours with a whole bunch of people, some of whom you know, and many of whom you don’t. But the ones you don’t know have been vetted already: they were invited to the wedding by either your friend, or your friend’s new committed partner. Everyone’s all dressed up and feeling terribly romantic. There’s a dancefloor. You find yourself wanting to throw a little kid through the window because he’s dancing with the girl you want to be dancing with. One thing leads to another, and... here I am in DC. Sarah has been with me more in the past three months than is easily explained, in California and Indiana. She has been stupifyingly supportive and loving, and brought light to what could have been a very dark few months. I am sitting in her Dupont Circle apartment feeling a little bit guilty for not being home to celebrate with many of you, but I hope you will forgive me. We are having a grand time.
Deep breaths all around. And then champagne!
I was shocked. Still am. It has been impossible not to be constantly cogitating around the infinite eventualities of all theoretical outcomes. To find myself lying awake at night, despite rather large doses of sleeping medication, working out contingencies for contingencies. And all of a sudden, there is an answer, a clear path, and not only that, the best possible one!
I have not yet made it into full-on celebration mode. For one, my body is nowhere near recovered. But more importantly, I am trepidatious about really letting go. At every turn for the past fifteen months, each time some doctor tells me that everything’s OK and I can get on with my life, the door has been slammed in my face shortly thereafter. Back to the hospital, and again in a gown, not a white coat. I want to believe that this time it’s true, that I can return to my carefully laid-out path, but I can’t help but be a little scared.
There is also a little matter of maintenance chemotherapy. In order to diminish even further the possibility of this crap ever coming back, I will be taking a low dose of etoposide for three months, starting in a month. Supposedly it will merely make me a little more tired than usual for a few days out of each month, but we’ll see about that.
Enough wet blankets! After the appointment, I immediately flew out to DC to celebrate. Washington, DC?!
I have tried in this blog to keep my personal life as private as I can, but to explain what the hell I am doing here, I am going to have to spill some beans. But only a few. Back in April, right in the middle of flying like mad around the country trying to decide where to get treatment, I attended the wedding of a dear friend in San Francisco. And we all know what can happen at weddings. There you are, hanging around for hours with a whole bunch of people, some of whom you know, and many of whom you don’t. But the ones you don’t know have been vetted already: they were invited to the wedding by either your friend, or your friend’s new committed partner. Everyone’s all dressed up and feeling terribly romantic. There’s a dancefloor. You find yourself wanting to throw a little kid through the window because he’s dancing with the girl you want to be dancing with. One thing leads to another, and... here I am in DC. Sarah has been with me more in the past three months than is easily explained, in California and Indiana. She has been stupifyingly supportive and loving, and brought light to what could have been a very dark few months. I am sitting in her Dupont Circle apartment feeling a little bit guilty for not being home to celebrate with many of you, but I hope you will forgive me. We are having a grand time.
Tuesday, June 26, 2007
Relief, Dedication, and Suffering
I now have attached to my body five leads, and at least five different tubes carrying various fluids into my body, hooked up to their various beeping and grunting pumps. I am a mess of wires and tubing, plastic bracelets, buttons, and sweat.
As may be remembered, or willfully forgotten, there was a point a few months back when my blood-borne tumor markers were in the normal range, and various doctors were being consulted as to whether or not it was necessary and/or possible to surgically remove what looked like a bunch of dead tumor still hanging around in my abdomen (the entry for Thursday April 5, 2007 will give more details for anyone interested). Then my tumor markers shot back up, and the whole question was rendered moot as this current course of chemotherapy was planned. Now that I am approaching the end of this phase, it is time to begin thinking about what happens next. A conversation with the head oncologist here clarified something very important, and left a huge, shimmering puddle of relief in its wake. No matter what the results of the CT scan that will be done at the end of next week, there will be no permanently handicapping surgery. It may still be necessary for me to undergo a major operation to remove any remaining tumor mass, but this surgery, if performed, will not involve the removal of my bladder and rectum, which at one point was being considered. If given a 20% chance that I would die of a secondary tumor in ten years without the bladder-and-rectum-removing surgery, but a much higher probability that I would live into old age with holes in my body emptying fetid waste into bags slung around my legs, what would I have done? How could I possibly make this decision, in this state? What would it mean to my family and friends to tell them that I was willing to risk it, and what would it mean to my sense of self if I bet on longevity? With ecstasy, I am hereby dropping the whole topic.
The beginning part of this week went very well. My days fell into a routine which was by no standards exciting, but in retrospect, great. We would go into the hospital around 8:30 (when we were being good), and lobby for a private room to escape the maddening beeping of other peoples’ IV pumps. I get hooked up via my bionic contraption to a huge bag of saline, which keeps me grunting my way over to the bathroom throughout the day. Blood is drawn, analyzed, and I am given electrolytes if necessary. I swallow lots of pills designed to keep the meanies from eating me from the inside. I sit there for around five hours, sometimes sleeping, sometimes reading, talking with my mother, allowing her to convince me to eat. Lately I have spent some quality time trying to catch up with my generation, awkwardly punching buttons on personal video game consoles loaned by friends. My spirits were kept sky-high by some stunningly incredible love and caring.
Saturday night, things started getting ugly. I had a delirious night, thrashing the sheets in the throes of half-awake dreams, punctuated by blindingly painful abdominal cramps. Sunday may have been the worst day that I have had so far during this entire ordeal, though this is a case in which I am happy to have a slippery memory. The basic problem throughout the whole day was pain control. Apparently rule number 1 with pain is that as long as it is not allowed to spiral out of control, it can be relatively easily managed, but once it gets its dirty festering claws in you, it takes gargantuan efforts to battle. Pain management must be among the most difficult jobs a doctor has. How do you balance the patient’s awareness against their misery? How do you know you are not being scammed, when the patients themselves may not realize that they have become dependent? Does the patient really know what they are asking for? How do you distinguish between people “bellyaching” and something important to take care of immediately? How do you not create an addiction while trying to help? And, by the way, careful not to OD anyone.
Up to this time, I was being given oral oxycodone sporadically, and even had it been given on time, it was just simply not up to the job. For the entire day I was clutching my gut in moderate pain, punctuated by spasms every fifteen minutes or so that would send me into a panic of sweat and moans for a few minutes. Every time I would try to eat (bland, small bites, very slowly), I would be rewarded with spasms so sharp that they would propel the food right back out. By the end of the day, I was having that reaction to the amount of water that it took to swallow a pill.
They decided to admit me around 5, but since they didn’t have any free beds in the BMT unit, I was sent to the general oncology unit just down the hall. It was a mistake to have acquiesced at all. The difference in competence and training of both the nurses and doctors was flagrant. I arrived around 6, and told the nurse that I was in pain, and cold. It took approximately an hour for a blanket to arrive, during which I was clenched, curled up in a ball trying to stay warm, as my guts gleefully jumped at the opportunity to cramp repeatedly. Mom is out, will be back later, but there is no cell phone reception and the landline only makes local calls. Push call button: “Pain! Cold!” – response: “We know, we are working on it.” “PAIN! COLD!” “Coming soon!” From 6pm until 9pm, my pain was completely out of control. Once the fentanyl pump did arrive, they had me on the lowest dose. It took me an hour of trying to organize my thoughts while writhing in pain to tell them that I needed more, way more. By the time my mom did arrive, things had settled, and she was on a righteous warpath.
But I was hungry. My body having rejected every piece of nourishment I tried to give it, I figured that it was finally the moment to try to eat something, since my pain was no longer a problem. Wrong. Slow learner. It took two attempts at eating and two violent reactions to realize that this was not going to work. At that point, all I wanted was sleep. I was sick of being in pain, sick of vomiting, sick of that day, sick of being conscious at all. A decision was made at around 2am to up my fentanyl dose, hit me with some ativan, and call it a night. Sounded great.
6am. I open my eyes to at least fifteen faces within three feet of mine, staring at me expectantly. The room is completely packed. Everyone is calling my name. I find it frankly amusing. Who didn’t tell me there was going to be a party in here later on? What’s up, everyone? Hi! Why are you asking ME what’s going on? I have no idea! And can I please go back to sleep? Now? Cause I’m really, really sleepy. Yes, I know where I am, yes, I know my name, hi mom, why are you crying?
I had been overdosed on fentanyl. Luckily, the room into which I had been transferred was a double, but with nobody occupying the other bed, my mom had decided to spend the night to head off any further problems. With no monitoring equipment set up, it is a damn good thing she did.
[Mom says: Had I not been there he might have died. I heard a weird nonhuman wheezing or rattling sound, twice, and rolled out of bed just to check it out. Joshua’s chest muscles were tight, his eyes were staring straight ahead, pupils and mouth wide open. I called to him, yelled at him, shook him, shook him again, kept yelling while I tried to sense a pulse, realized that was stupid, panicked, pushed the call button, realized that was stupid too, called for help twice down the hall, and everyone came running. The nurse turned off the infusion pump immediately, and gave him oxygen. The nurse hugged me and took me out of the room while the doctors piled in. He was revived within a minute or two.]
Needless to say, any indignation at the treatment I had received on Sunday was dwarfed by the fury of Monday morning.
I was transferred back to the BMT unit, and all the doctors and managers are apologizing and trying to figure out what went so wrong. My pain is back under control at a much lower dose of fentanyl, and while I did spend yet another day hungry because of bureaucratic stupidity, I will be started on IV nutrition this evening, so that I won’t be trying to feed myself and cause more damage.
I spent the day taking tiny sips of very dilute fruit juice and sleeping. It was a great day.
As may be remembered, or willfully forgotten, there was a point a few months back when my blood-borne tumor markers were in the normal range, and various doctors were being consulted as to whether or not it was necessary and/or possible to surgically remove what looked like a bunch of dead tumor still hanging around in my abdomen (the entry for Thursday April 5, 2007 will give more details for anyone interested). Then my tumor markers shot back up, and the whole question was rendered moot as this current course of chemotherapy was planned. Now that I am approaching the end of this phase, it is time to begin thinking about what happens next. A conversation with the head oncologist here clarified something very important, and left a huge, shimmering puddle of relief in its wake. No matter what the results of the CT scan that will be done at the end of next week, there will be no permanently handicapping surgery. It may still be necessary for me to undergo a major operation to remove any remaining tumor mass, but this surgery, if performed, will not involve the removal of my bladder and rectum, which at one point was being considered. If given a 20% chance that I would die of a secondary tumor in ten years without the bladder-and-rectum-removing surgery, but a much higher probability that I would live into old age with holes in my body emptying fetid waste into bags slung around my legs, what would I have done? How could I possibly make this decision, in this state? What would it mean to my family and friends to tell them that I was willing to risk it, and what would it mean to my sense of self if I bet on longevity? With ecstasy, I am hereby dropping the whole topic.
The beginning part of this week went very well. My days fell into a routine which was by no standards exciting, but in retrospect, great. We would go into the hospital around 8:30 (when we were being good), and lobby for a private room to escape the maddening beeping of other peoples’ IV pumps. I get hooked up via my bionic contraption to a huge bag of saline, which keeps me grunting my way over to the bathroom throughout the day. Blood is drawn, analyzed, and I am given electrolytes if necessary. I swallow lots of pills designed to keep the meanies from eating me from the inside. I sit there for around five hours, sometimes sleeping, sometimes reading, talking with my mother, allowing her to convince me to eat. Lately I have spent some quality time trying to catch up with my generation, awkwardly punching buttons on personal video game consoles loaned by friends. My spirits were kept sky-high by some stunningly incredible love and caring.
Saturday night, things started getting ugly. I had a delirious night, thrashing the sheets in the throes of half-awake dreams, punctuated by blindingly painful abdominal cramps. Sunday may have been the worst day that I have had so far during this entire ordeal, though this is a case in which I am happy to have a slippery memory. The basic problem throughout the whole day was pain control. Apparently rule number 1 with pain is that as long as it is not allowed to spiral out of control, it can be relatively easily managed, but once it gets its dirty festering claws in you, it takes gargantuan efforts to battle. Pain management must be among the most difficult jobs a doctor has. How do you balance the patient’s awareness against their misery? How do you know you are not being scammed, when the patients themselves may not realize that they have become dependent? Does the patient really know what they are asking for? How do you distinguish between people “bellyaching” and something important to take care of immediately? How do you not create an addiction while trying to help? And, by the way, careful not to OD anyone.
Up to this time, I was being given oral oxycodone sporadically, and even had it been given on time, it was just simply not up to the job. For the entire day I was clutching my gut in moderate pain, punctuated by spasms every fifteen minutes or so that would send me into a panic of sweat and moans for a few minutes. Every time I would try to eat (bland, small bites, very slowly), I would be rewarded with spasms so sharp that they would propel the food right back out. By the end of the day, I was having that reaction to the amount of water that it took to swallow a pill.
They decided to admit me around 5, but since they didn’t have any free beds in the BMT unit, I was sent to the general oncology unit just down the hall. It was a mistake to have acquiesced at all. The difference in competence and training of both the nurses and doctors was flagrant. I arrived around 6, and told the nurse that I was in pain, and cold. It took approximately an hour for a blanket to arrive, during which I was clenched, curled up in a ball trying to stay warm, as my guts gleefully jumped at the opportunity to cramp repeatedly. Mom is out, will be back later, but there is no cell phone reception and the landline only makes local calls. Push call button: “Pain! Cold!” – response: “We know, we are working on it.” “PAIN! COLD!” “Coming soon!” From 6pm until 9pm, my pain was completely out of control. Once the fentanyl pump did arrive, they had me on the lowest dose. It took me an hour of trying to organize my thoughts while writhing in pain to tell them that I needed more, way more. By the time my mom did arrive, things had settled, and she was on a righteous warpath.
But I was hungry. My body having rejected every piece of nourishment I tried to give it, I figured that it was finally the moment to try to eat something, since my pain was no longer a problem. Wrong. Slow learner. It took two attempts at eating and two violent reactions to realize that this was not going to work. At that point, all I wanted was sleep. I was sick of being in pain, sick of vomiting, sick of that day, sick of being conscious at all. A decision was made at around 2am to up my fentanyl dose, hit me with some ativan, and call it a night. Sounded great.
6am. I open my eyes to at least fifteen faces within three feet of mine, staring at me expectantly. The room is completely packed. Everyone is calling my name. I find it frankly amusing. Who didn’t tell me there was going to be a party in here later on? What’s up, everyone? Hi! Why are you asking ME what’s going on? I have no idea! And can I please go back to sleep? Now? Cause I’m really, really sleepy. Yes, I know where I am, yes, I know my name, hi mom, why are you crying?
I had been overdosed on fentanyl. Luckily, the room into which I had been transferred was a double, but with nobody occupying the other bed, my mom had decided to spend the night to head off any further problems. With no monitoring equipment set up, it is a damn good thing she did.
[Mom says: Had I not been there he might have died. I heard a weird nonhuman wheezing or rattling sound, twice, and rolled out of bed just to check it out. Joshua’s chest muscles were tight, his eyes were staring straight ahead, pupils and mouth wide open. I called to him, yelled at him, shook him, shook him again, kept yelling while I tried to sense a pulse, realized that was stupid, panicked, pushed the call button, realized that was stupid too, called for help twice down the hall, and everyone came running. The nurse turned off the infusion pump immediately, and gave him oxygen. The nurse hugged me and took me out of the room while the doctors piled in. He was revived within a minute or two.]
Needless to say, any indignation at the treatment I had received on Sunday was dwarfed by the fury of Monday morning.
I was transferred back to the BMT unit, and all the doctors and managers are apologizing and trying to figure out what went so wrong. My pain is back under control at a much lower dose of fentanyl, and while I did spend yet another day hungry because of bureaucratic stupidity, I will be started on IV nutrition this evening, so that I won’t be trying to feed myself and cause more damage.
I spent the day taking tiny sips of very dilute fruit juice and sleeping. It was a great day.
Thursday, June 14, 2007
high dose round 2
I am sitting in the exit row, flying back across this vast country, hopefully doing this stretch for the last time. We are on our way back to Indianapolis, after an absolutely essential break in Palo Alto. It was not the break that I had imagined: I had hoped to leave it all behind, to relegate all of the unpleasantness to the time when I was “working” on things in Indiana, and to have a real vacation, unfettered by side effects. Coming from as low as I had been, though, this was of course wishful thinking. Obviously, I immensely enjoyed being home, relaxing outslde, walking around, eating (and appreciating!) wonderful food, sleeping in my own bed for as long as I wanted without being awoken by nurses or alarm clocks, seeing friends and being able to hug them, having conversations without the distracting smell of the hospital seeping out of my pores, and generally participating in the big wide world out there. But it was actually less of a vacation than a wonderful time and place to recuperate. In the grand scheme of things I surely bounced back quickly, but it has felt agonizingly slow from the inside. I spent way more time lying down than I expected. Ten days later, many of the symptoms I described last time are still present – the blotch in the middle of my visual field still makes reading slow, the neuropathy in my feet makes a short walk around the block feel like I have been running barefoot on gravel, and the combination of the dissonant tones constantly screaming in my head with the perception that everyone is only voicing 75% of the words in each sentence makes conversation require eye contact, focus, and repetition.
The prospect of even more damage being done by the next dose that I will be getting, starting tomorrow, is very scary. I know that hearing aids have gotten better over the years. I know that many of my symptoms will diminish in severity, and may even disappear entirely. For instance, my sense of taste has completely returned! But projecting in to the future, the route I had laid out for myself was ambitious enough without factoring in these and other possible handicaps, and there are moments when I can’t help but allow doubt to creep in from the dark corners of my mind. I know that lots of people go through life much more incapacitated than I will be, no matter how bad side effects from chemo get, and no matter how extreme a surgery I may have to undergo. But contemplating someone else’s disability is diffferent from thinking about my own. It turns out that not only is sympathy really not the same as empathy, but that being able to understand what it is like to be in someone else’s shoes doesn’t mean that I have figured out how to tie my own.
For some reason, this second and final round of high dose chemo with stem cell transplant is supposed to be easier to get through than the first one. Maybe it’s because there are fewer unknowns, maybe because the whole process will be a few days shorter because we have already collected enough stem cells and so don’t have to repeat that procedure, or maybe it’s simply because I know that no matter what the outcome, I will not be doing this again. In any case, despite the tone of this entry, I am heading into this feeling (relatively) strong, energetic, and optimistic. There is so much water under the bridge at this point that there is no way to see it other than just another ripple that will crest, break, and move on.
The prospect of even more damage being done by the next dose that I will be getting, starting tomorrow, is very scary. I know that hearing aids have gotten better over the years. I know that many of my symptoms will diminish in severity, and may even disappear entirely. For instance, my sense of taste has completely returned! But projecting in to the future, the route I had laid out for myself was ambitious enough without factoring in these and other possible handicaps, and there are moments when I can’t help but allow doubt to creep in from the dark corners of my mind. I know that lots of people go through life much more incapacitated than I will be, no matter how bad side effects from chemo get, and no matter how extreme a surgery I may have to undergo. But contemplating someone else’s disability is diffferent from thinking about my own. It turns out that not only is sympathy really not the same as empathy, but that being able to understand what it is like to be in someone else’s shoes doesn’t mean that I have figured out how to tie my own.
For some reason, this second and final round of high dose chemo with stem cell transplant is supposed to be easier to get through than the first one. Maybe it’s because there are fewer unknowns, maybe because the whole process will be a few days shorter because we have already collected enough stem cells and so don’t have to repeat that procedure, or maybe it’s simply because I know that no matter what the outcome, I will not be doing this again. In any case, despite the tone of this entry, I am heading into this feeling (relatively) strong, energetic, and optimistic. There is so much water under the bridge at this point that there is no way to see it other than just another ripple that will crest, break, and move on.
Monday, June 4, 2007
Jailbreak
Little by little I become less bionic and more human. There are fewer and fewer glistening plastic udders dripping questionably welcome drugs into me. One by one, the tubes feeding into my port are being taken away. An amazing feat of biology has been successfully performed: my stem cells have engrafted, and my immune system has reconstituted itself from oblivion. I have one more night in the hospital, a day to pack, and then I fly home on Tuesday!
This has been a very difficult hospital stay, and I am extremely relieved to be getting out of here.
Senses are precious and delicate things. All of mine have been under attack. My ears are worse than they have ever been, to the point that I have trouble understanding my own mother. Music is muffled, and voices on movies or TV are practically unintelligible. If something comes in from the hospital food service, the nauseating smell of the institutional kitchen overwhelms the smell of the food. My feet are numb and cold, I am constantly sweating even when I don’t have a fever. My fingers are numb and feel clumsy. Everything, even water, tastes strange, if not rivolting. Just getting enough calories in is a real challenge, food service or not. My eyes… :
A few nights ago (how many? How to tell? Time slips by in a sweaty smear), I was reading before going to bed, and I noticed that I was having difficulty because there was an after-image (like after looking at a bright light) that wasn’t going away. What was eerie, and then terrifying, was that there were no bright lights in my field of vision – the reading light was behind me. With my fingers clumsy, my feet numb, and my ears screaming, I was primed to assume the worst: that the peripheral neuropathy caused by the chemo had progressed, and had begun to destroy my optic nerve. Thankfully, both intravenous anti-anxiety meds and a consult from opthamology were not too far away (there are good things about being in the hospital). After having my eyes dilated for five hours (during which time I could not only not see anything, but not even listen to music because my ears are so screwy), the opthamologist arrived and quickly diagnosed a retinal bleed. It seems that little tiny breaks in teeny vessels happen to everyone all the time, but get patched up fast enough that they don’t hemorrhage. Since my platelets were so low, when a small vessel in my eye burst, it wasn’t repaired quickly, and enough blood spilled out into the surrounding tissue that it caused a spot on my retina (right in the middle of my right eye’s visual field) to be perceptible. To my great relief and annoyance, I was told that it would go away over a few weeks. Next round, we are going to be doing even more platelet transfusions to hopefully keep this from happening again.
It is difficult to contemplate the next round, even to go so far as to say “only one more to go!”, because I really haven’t gotten over this one yet. The thought of having to do it again is sickening, at this point. I am focused on getting to sitting outside in my parents’ garden, and not much beyond.
This has been a very difficult hospital stay, and I am extremely relieved to be getting out of here.
Senses are precious and delicate things. All of mine have been under attack. My ears are worse than they have ever been, to the point that I have trouble understanding my own mother. Music is muffled, and voices on movies or TV are practically unintelligible. If something comes in from the hospital food service, the nauseating smell of the institutional kitchen overwhelms the smell of the food. My feet are numb and cold, I am constantly sweating even when I don’t have a fever. My fingers are numb and feel clumsy. Everything, even water, tastes strange, if not rivolting. Just getting enough calories in is a real challenge, food service or not. My eyes… :
A few nights ago (how many? How to tell? Time slips by in a sweaty smear), I was reading before going to bed, and I noticed that I was having difficulty because there was an after-image (like after looking at a bright light) that wasn’t going away. What was eerie, and then terrifying, was that there were no bright lights in my field of vision – the reading light was behind me. With my fingers clumsy, my feet numb, and my ears screaming, I was primed to assume the worst: that the peripheral neuropathy caused by the chemo had progressed, and had begun to destroy my optic nerve. Thankfully, both intravenous anti-anxiety meds and a consult from opthamology were not too far away (there are good things about being in the hospital). After having my eyes dilated for five hours (during which time I could not only not see anything, but not even listen to music because my ears are so screwy), the opthamologist arrived and quickly diagnosed a retinal bleed. It seems that little tiny breaks in teeny vessels happen to everyone all the time, but get patched up fast enough that they don’t hemorrhage. Since my platelets were so low, when a small vessel in my eye burst, it wasn’t repaired quickly, and enough blood spilled out into the surrounding tissue that it caused a spot on my retina (right in the middle of my right eye’s visual field) to be perceptible. To my great relief and annoyance, I was told that it would go away over a few weeks. Next round, we are going to be doing even more platelet transfusions to hopefully keep this from happening again.
It is difficult to contemplate the next round, even to go so far as to say “only one more to go!”, because I really haven’t gotten over this one yet. The thought of having to do it again is sickening, at this point. I am focused on getting to sitting outside in my parents’ garden, and not much beyond.
Wednesday, May 30, 2007
Earthrise from the dark side of the moon.
Strange journeys, and slow. Occasionally a random tinkly arpeggio penetrates the thick barrier of wet felt, sweater pill, and static electricity that surrounds my head, cakes my eardrums, and turns my brain into the kind of crumbly sludge that not even a six year old would want to sled in. I look up to identify its source, and find that it is coming from a little yellow fish. There must be a camera trained on a fish tank somewhere, and when a DVD ends, this is where the tuner defaults. Was somebody watching a movie?
I have been in the hospital for, oh, about four nights I guess? But I certainly can’t figure out why everyone else seems so sure about it. After two sleepless nights at the hotel of belly pain, one of them involving vomissements and copious libations of sweat onto my pillow and sheets, it was time to stop pretending that I was going to make it through this without being hospitalized.
While I was already on quite incredible numbers of prophylactic anti-badstuff, when I got in they put me on even more. So now I am on vancomycin, fluconazole, levaquin, acyclovir, meropenem, cephalexin, cllindamycin skin cream, and chlorhexidine mouthwash! If you don’t immediately have a reaction to those two words next to each other, don’t worry about it. And I STILL have had a fever for days now. Everything’s just out of whack, and regaining its equilibrium is slow. They’ve even got me on IV nutrition, which is a trip. I can feel my guts going “wait a minute, no, no, no, you’ve got it ALL wrong, this stuff is supposed to be on THAT side!” It is easy to point to the drugs as causing the problem (“Hey Ahmet! All these American Hummers hangin around here, eh, you think they are really here lookin out for our best interest? Cause I ain’t so sure all of a sudden.”), but in my case, the peacekeepers really are the good guys, and are doing their job, and are going to win, with the help of the locals, who have started to rally. Tumor markers are in the normal range. My white counts are no longer dropping, and are expected to be back on their daily doubling curve by tomorrow. Platelet and red cell infusions have also sped the process, and further complicated filling out future health-related paperwork.
I was put on oxycodone as needed, and then a morpine drip, and then a morphine PCA (patient-controlled administration: the famous button!), and then a fentanyl PCA, which I had to ask them to turn down, because every time I would hit it I would wake up on another planet. I have been having great little nonsensical hallucinations, though. 10:00! Well, that’s when we cigar smoking three-piece-suit wearing railroad tycoons take our mid-morning nap, now isn’t it ol’chap? Off to the University of Chicago it is! Chicago or bust!
I don’t feel like I sleep much, but surely I do, as there is no other way to account for the time. Reading gets done at about a quarter of a page a day. Movies are best when they involve little dialogue, because there is nothing my brain does worse these days than decoding a bunch of people screaming at each other caught on poor recording equipment and played through tiny speakers on the other side of the room. The narcotics dictate a schedule of their own, and that combined with my recent severe drop in hearing acuity means that things are edgy – I sometimes have no warning when a nurse or my mother is going to do something, and I jump out of my skin in fright. I have to tell all my nurses and doctors that they have to speak slowly and clearly if then want to be understood, but they all forget anyway. I can’t really listen to my own music, because I fall asleep when I put it on, and then am awoken disorented and startled when the theme changes. Phone conversation is equally difficult, so I apologize if you’ve caught me ignoring your calls. I am not often in a communicative mental state, and even when I am, the effort to decode what you are saying and generate phrases of my own can literally put me out of breath. But this will all pass, and soon. And then I’ll do it again!
I have been in the hospital for, oh, about four nights I guess? But I certainly can’t figure out why everyone else seems so sure about it. After two sleepless nights at the hotel of belly pain, one of them involving vomissements and copious libations of sweat onto my pillow and sheets, it was time to stop pretending that I was going to make it through this without being hospitalized.
While I was already on quite incredible numbers of prophylactic anti-badstuff, when I got in they put me on even more. So now I am on vancomycin, fluconazole, levaquin, acyclovir, meropenem, cephalexin, cllindamycin skin cream, and chlorhexidine mouthwash! If you don’t immediately have a reaction to those two words next to each other, don’t worry about it. And I STILL have had a fever for days now. Everything’s just out of whack, and regaining its equilibrium is slow. They’ve even got me on IV nutrition, which is a trip. I can feel my guts going “wait a minute, no, no, no, you’ve got it ALL wrong, this stuff is supposed to be on THAT side!” It is easy to point to the drugs as causing the problem (“Hey Ahmet! All these American Hummers hangin around here, eh, you think they are really here lookin out for our best interest? Cause I ain’t so sure all of a sudden.”), but in my case, the peacekeepers really are the good guys, and are doing their job, and are going to win, with the help of the locals, who have started to rally. Tumor markers are in the normal range. My white counts are no longer dropping, and are expected to be back on their daily doubling curve by tomorrow. Platelet and red cell infusions have also sped the process, and further complicated filling out future health-related paperwork.
I was put on oxycodone as needed, and then a morpine drip, and then a morphine PCA (patient-controlled administration: the famous button!), and then a fentanyl PCA, which I had to ask them to turn down, because every time I would hit it I would wake up on another planet. I have been having great little nonsensical hallucinations, though. 10:00! Well, that’s when we cigar smoking three-piece-suit wearing railroad tycoons take our mid-morning nap, now isn’t it ol’chap? Off to the University of Chicago it is! Chicago or bust!
I don’t feel like I sleep much, but surely I do, as there is no other way to account for the time. Reading gets done at about a quarter of a page a day. Movies are best when they involve little dialogue, because there is nothing my brain does worse these days than decoding a bunch of people screaming at each other caught on poor recording equipment and played through tiny speakers on the other side of the room. The narcotics dictate a schedule of their own, and that combined with my recent severe drop in hearing acuity means that things are edgy – I sometimes have no warning when a nurse or my mother is going to do something, and I jump out of my skin in fright. I have to tell all my nurses and doctors that they have to speak slowly and clearly if then want to be understood, but they all forget anyway. I can’t really listen to my own music, because I fall asleep when I put it on, and then am awoken disorented and startled when the theme changes. Phone conversation is equally difficult, so I apologize if you’ve caught me ignoring your calls. I am not often in a communicative mental state, and even when I am, the effort to decode what you are saying and generate phrases of my own can literally put me out of breath. But this will all pass, and soon. And then I’ll do it again!
Tuesday, May 15, 2007
Hoosier
Even here, nobody knows what a “Hoosier” is, so we can all stop losing sleep over it.
After a couple of days here, I am slowly getting used to our sterile, corporate apartment suite. Lacking a garden and any hope of charm, it has a number of redeeming features: it is clean, functional, and close to the hospital. And it has free wi-fi.
My mother, father, and I flew in on Sunday, and began both moving in and making headway in terms of treatment. I went in to the hospital, my new home-away-from-home-away-from-home-away-from-home (where do I live?), to get the third of many Neupogen (stem cell growth factor) shots. I was pleasantly surprised that all of the nursing staff seemed already to know who I was, and were all ready for me the moment I walked in the door. It has now been three days, and this remains true. I have not yet waited a single second in a waiting room! This place seems extraordinarily well-organized, which helps me feel like coming all this way was a good decision.
I got my central line installed yesterday, so I am back to being bionic. The tubes enter my body just above my nipple and visibly snake up just under my skin, looping over the top of the clavicle and down into the subclavian vein, following it into the right atrium of my heart. I am still sore from the procedure, and haven’t yet figured out how I am going to take a shower without getting the whole business wet.
I spent most of today in the hospital, the first of many such days here. Today, they collected the stem cells which will reconstitute my immune system after the chemotherapy. I spent a fair amount of time grilling people about various aspects of the procedure (how the machine works, how many cells they are collecting, how they are stored, etc), and slept the rest of the time. I got a call from the head of the transplant unit in the evening, relaying the good news that they had collected just enough stem cells in today’s collection that I wouldn’t need to repeat the procedure tomorrow. While I was happy to hear that things were going better than planned, I was not comfortable with the numbers. I had been told by a number of people who are involved in stem cell transplants that it was important to have plenty of viable stem cells in order for things to turn out well, and I was concerned that merely having “sufficient” numbers of cells to transplant was running an unnecessary risk. While the transplant doctor insisted that he believed that we had collected enough cells, he said that there was no problem with me repeating the collection tomorrow if it allayed my concern, and that he would set it up. On the one hand I feel kind of presumptuous second-guessing what is probably the most highly qualified team in the world for this procedure, and on the other hand, I don’t want to mess around. I am playing for every fraction of a percentage point I can get here, and if people are willing to humor me, I see no reason not to err on the side of caution. My immune system has served me pretty well up until now, and I would like it back, please.
After a couple of days here, I am slowly getting used to our sterile, corporate apartment suite. Lacking a garden and any hope of charm, it has a number of redeeming features: it is clean, functional, and close to the hospital. And it has free wi-fi.
My mother, father, and I flew in on Sunday, and began both moving in and making headway in terms of treatment. I went in to the hospital, my new home-away-from-home-away-from-home-away-from-home (where do I live?), to get the third of many Neupogen (stem cell growth factor) shots. I was pleasantly surprised that all of the nursing staff seemed already to know who I was, and were all ready for me the moment I walked in the door. It has now been three days, and this remains true. I have not yet waited a single second in a waiting room! This place seems extraordinarily well-organized, which helps me feel like coming all this way was a good decision.
I got my central line installed yesterday, so I am back to being bionic. The tubes enter my body just above my nipple and visibly snake up just under my skin, looping over the top of the clavicle and down into the subclavian vein, following it into the right atrium of my heart. I am still sore from the procedure, and haven’t yet figured out how I am going to take a shower without getting the whole business wet.
I spent most of today in the hospital, the first of many such days here. Today, they collected the stem cells which will reconstitute my immune system after the chemotherapy. I spent a fair amount of time grilling people about various aspects of the procedure (how the machine works, how many cells they are collecting, how they are stored, etc), and slept the rest of the time. I got a call from the head of the transplant unit in the evening, relaying the good news that they had collected just enough stem cells in today’s collection that I wouldn’t need to repeat the procedure tomorrow. While I was happy to hear that things were going better than planned, I was not comfortable with the numbers. I had been told by a number of people who are involved in stem cell transplants that it was important to have plenty of viable stem cells in order for things to turn out well, and I was concerned that merely having “sufficient” numbers of cells to transplant was running an unnecessary risk. While the transplant doctor insisted that he believed that we had collected enough cells, he said that there was no problem with me repeating the collection tomorrow if it allayed my concern, and that he would set it up. On the one hand I feel kind of presumptuous second-guessing what is probably the most highly qualified team in the world for this procedure, and on the other hand, I don’t want to mess around. I am playing for every fraction of a percentage point I can get here, and if people are willing to humor me, I see no reason not to err on the side of caution. My immune system has served me pretty well up until now, and I would like it back, please.
Thursday, May 3, 2007
hot beds and cold feet
I came down with a little cold just after coming back from the hospital last Wednesday, and by Sunday, I had developed a nearly-constant fever. A real problem in people like me whose white blood cell counts are low is that it is very difficult to tell whether fevers are due to a benign viral infection that will pass on its own, or due to a bacterial infection that could quickly get out of control. I had been told to call in if I spiked above 100.5, and after some stalling, I let myself be cajoled into heading back to the hospital Sunday night. The trip through the Emergency Department went smoothly, considering, and I was in my own room three hours later. The pleasure of having a single room was a little dampened by the knowledge that only the people who really need them get them.
I am getting really tired of hospitals. They aren’t nearly as interesting when wearing a grey face as they are wearing a white coat. A hospital is a terrible place to be when you are feeling bad. From Sunday night until Wednesday morning I was moved between four different rooms, and got poked with a needle at least eight times (that I can remember). Once the fever broke, became more of an exercise in patience and acceptance than anything else. I had to stay until I hadn’t had a fever for more than 24 hours, and my white blood cell count rose back to a safe level. In the meantime, they cultured my blood and urine looking for bacteria, and dripped me full of antibiotics just in case. Luckily, my white count bounced back fast, my fevers stopped on their own, and they didn’t find any evidence of infection, so the projected five day stay only ended up being around three.
I had known that it was a possibility that I would develop just such a “neutropenic fever”, but didn’t really think that it would happen, because I have gotten away with being immunocompromised before without any real problem. It was a disappointment to “lose” these days of freedom, but better safe than sorry at this point.
Back at home, I have new worries. The side effects of yet another dose of cisplatin are becoming apparent. For a few weeks now, my feet have been cold/tingling/numb/burning, as if they have been splashed through freezing puddles for hours. Instead of thawing, though, day by day they seem to become a little more like damp cobblestones and a little less like feet. My ears have started to scream again, and for the first time in a long time, I had to plug my ears when the dog barked to keep from wincing in pain. Most terrifying, though, is that my hands feel slow. Typing is awkward. Writing is sloppy. I remind myself that I regained much if not all of the hearing loss I experienced after the first cisplatin regimen, and that I am not getting any more of that stuff, no matter what happens (carboplatin apparently has fewer of these kind of side effects). Following a good review paper I found, I started taking vitamin E, alpha-lipoic acid, and acetyl carnitine, and am looking into glutathione, glutamine, and N-acetylcisteine. Time to get back to the acupuncturist, too.
In the meantime, I am very happy to be home, and no longer immunocompromised. I still have a cold, and am still feeling pretty beat down, but I am getting over it, and looking forward to enjoying the next ten days as much as I can.
I am getting really tired of hospitals. They aren’t nearly as interesting when wearing a grey face as they are wearing a white coat. A hospital is a terrible place to be when you are feeling bad. From Sunday night until Wednesday morning I was moved between four different rooms, and got poked with a needle at least eight times (that I can remember). Once the fever broke, became more of an exercise in patience and acceptance than anything else. I had to stay until I hadn’t had a fever for more than 24 hours, and my white blood cell count rose back to a safe level. In the meantime, they cultured my blood and urine looking for bacteria, and dripped me full of antibiotics just in case. Luckily, my white count bounced back fast, my fevers stopped on their own, and they didn’t find any evidence of infection, so the projected five day stay only ended up being around three.
I had known that it was a possibility that I would develop just such a “neutropenic fever”, but didn’t really think that it would happen, because I have gotten away with being immunocompromised before without any real problem. It was a disappointment to “lose” these days of freedom, but better safe than sorry at this point.
Back at home, I have new worries. The side effects of yet another dose of cisplatin are becoming apparent. For a few weeks now, my feet have been cold/tingling/numb/burning, as if they have been splashed through freezing puddles for hours. Instead of thawing, though, day by day they seem to become a little more like damp cobblestones and a little less like feet. My ears have started to scream again, and for the first time in a long time, I had to plug my ears when the dog barked to keep from wincing in pain. Most terrifying, though, is that my hands feel slow. Typing is awkward. Writing is sloppy. I remind myself that I regained much if not all of the hearing loss I experienced after the first cisplatin regimen, and that I am not getting any more of that stuff, no matter what happens (carboplatin apparently has fewer of these kind of side effects). Following a good review paper I found, I started taking vitamin E, alpha-lipoic acid, and acetyl carnitine, and am looking into glutathione, glutamine, and N-acetylcisteine. Time to get back to the acupuncturist, too.
In the meantime, I am very happy to be home, and no longer immunocompromised. I still have a cold, and am still feeling pretty beat down, but I am getting over it, and looking forward to enjoying the next ten days as much as I can.
Saturday, April 28, 2007
28 April 2007
I am sitting in the backyard of my parents’ house, luxuriating in the soft northern California springtime, and shaking off six very long days in the hospital. It fades mostly into a blur – at least there’s one welcome side effect to all the drugs. Stanford was a more pleasant hospital to be inpatient, despite not having my own room – there was an easily-accessible, private, and stunning garden, and the IV pumps were newer, quieter, and less prone to dusk-to-dawn squawking. Plus the night nurses were cute. Ahem. Hey, any bit helps.
The come-down has been easier so far, too. While the chemo obviously has taken its toll – the screaming in my head has amped up a few notches again, I did spend most of yesterday staring at the wall and fighting rather rivolting blurp-like concoctions, and it did take a rather large dose of sleep meds to overcome the steriods last night – my overall state of being is relatively good. My blood counts haven’t dropped to the same extent as last time, which means that I will be less easily tired, less easily injured, and less immunocompromised, all of which will make it much easier to enjoy the next couple of weeks before heading off to Indiana.
Sitting around is narcotic in and of itself, but it is no good for me. I find that I have to remind myself that just because life has taken a detour doesn’t meen I have to be stuck in a meaningless eddy. The nurse asks: “Are you a student?” – “Well, kind of yes, well, I WAS a student, no actually, I still am, really. I mean…”. Conversations like these remind me that student-ness is as much a state of mind as one of fact, and that I want to remain determined throughout this business to suck this cancer dry for all it can teach me. It takes a concerted effort, though, to remain engaged with the details of what’s going on, because I feel like I have spend so much time telling people about what is happening on a day-to-day level that I get sick of even thinking about my illness. Often by the time I am finally alone and clearheaded enough to sit down and dedicate some time to investigating on a more medico-scientific level, I find it hard not to indulge in more immediate pleasures or obligations. Blogging seems to fall somewhere in-between, but one of the good results of the pressure to produce is that I am provded a forum in which to reflect on what I am doing with my time, and decide what I want to do about it.
The come-down has been easier so far, too. While the chemo obviously has taken its toll – the screaming in my head has amped up a few notches again, I did spend most of yesterday staring at the wall and fighting rather rivolting blurp-like concoctions, and it did take a rather large dose of sleep meds to overcome the steriods last night – my overall state of being is relatively good. My blood counts haven’t dropped to the same extent as last time, which means that I will be less easily tired, less easily injured, and less immunocompromised, all of which will make it much easier to enjoy the next couple of weeks before heading off to Indiana.
Sitting around is narcotic in and of itself, but it is no good for me. I find that I have to remind myself that just because life has taken a detour doesn’t meen I have to be stuck in a meaningless eddy. The nurse asks: “Are you a student?” – “Well, kind of yes, well, I WAS a student, no actually, I still am, really. I mean…”. Conversations like these remind me that student-ness is as much a state of mind as one of fact, and that I want to remain determined throughout this business to suck this cancer dry for all it can teach me. It takes a concerted effort, though, to remain engaged with the details of what’s going on, because I feel like I have spend so much time telling people about what is happening on a day-to-day level that I get sick of even thinking about my illness. Often by the time I am finally alone and clearheaded enough to sit down and dedicate some time to investigating on a more medico-scientific level, I find it hard not to indulge in more immediate pleasures or obligations. Blogging seems to fall somewhere in-between, but one of the good results of the pressure to produce is that I am provded a forum in which to reflect on what I am doing with my time, and decide what I want to do about it.
Wednesday, April 18, 2007
The Plan
This entry is going to be a dry one, since I am still resonating about what it all means. Plus, I've only got another 41 hours of feeling human left, and it is a beautiful day!
We have made a choice, and believe it or not, we are going to Indiana! It was a difficult decision to make, but I hope, the right one. The team in Indiana, led by Dr Einhorn, was made famous by treating Lance Armstrong, and has done more of this than anyone in the world, including Memorial Sloan Kettering in New York. The only place on the west coast that has any experience with treating advanced germ cell tumors is City of Hope outside of LA, but the doctor who would be in charge will be out of town for another three weeks, and I don't have that long. Both the team in NY and the team in Indiana recommended high dose chemotherapy with autologous stem cell transplant. I poured over the published and soon-to-be published results from both teams with the help of my mother and my uncle, who is an Evidence-Based Medicine researcher. After weighing many variables, we decided to go with the data and have it done at Indiana. A ~60-80% cure rate beats ~50%, especially when the sample size is 2-3 times as big (depending on stratification).
The first month will actually be done inpatient at Stanford, where I will get one cycle of standard dose vinblastine/ifosfamide/cisplatin, starting this Friday and lasting five days. The point of this is threefold: to hit the cancer immediately, to hit it with something that won't take the insurance company two weeks to approve (seriously!), and to induce my body to pump hematopoietic (blood-producing) stem cells out into my blood, so that they can be collected and stored away for the future. I will be going to Indiana on May 13th for the stem cell "harvest" and the first of two rounds of high dose carboplatin and etoposide, after which my stem cells will be reinfused to reconstitute my immune system, which will have been decimated by the chemo. The dosage that they will be giving me is something like four times what I have received in the past, which I can tell you fills me with joy. I return to California around June 1st, and then head back to Indiana on June 13th for the second round. After recovering for 4-6 weeks, I will likely need surgery to remove any residual masses, but if the past month is any indication, that decision will not be a clear one.
There are other reasons to be in Indiana as well. I will be severely immunocompromised, and keeping my environment as clean as possible will be much easier in Indiana than in Manhattan. The overall fun level may be lower, but I am not exactly going to be partying all night long, and can't eat out anyway, so the lower overall stress level is probably more important. My mother, who will be taking care of me, will have an infinitely easier time of it in Indianapolis. For whatever reason the timing is better with Indiana's protocol: it is nice that the first month can be done at home, and also great that even if we go ahead with the surgery, I will likely get back to health in time to start school again where I left off in November.
My new doctor, Larry Einhorn (the only Jew in Indiana?), with Lance Armstrong
We have made a choice, and believe it or not, we are going to Indiana! It was a difficult decision to make, but I hope, the right one. The team in Indiana, led by Dr Einhorn, was made famous by treating Lance Armstrong, and has done more of this than anyone in the world, including Memorial Sloan Kettering in New York. The only place on the west coast that has any experience with treating advanced germ cell tumors is City of Hope outside of LA, but the doctor who would be in charge will be out of town for another three weeks, and I don't have that long. Both the team in NY and the team in Indiana recommended high dose chemotherapy with autologous stem cell transplant. I poured over the published and soon-to-be published results from both teams with the help of my mother and my uncle, who is an Evidence-Based Medicine researcher. After weighing many variables, we decided to go with the data and have it done at Indiana. A ~60-80% cure rate beats ~50%, especially when the sample size is 2-3 times as big (depending on stratification).
The first month will actually be done inpatient at Stanford, where I will get one cycle of standard dose vinblastine/ifosfamide/cisplatin, starting this Friday and lasting five days. The point of this is threefold: to hit the cancer immediately, to hit it with something that won't take the insurance company two weeks to approve (seriously!), and to induce my body to pump hematopoietic (blood-producing) stem cells out into my blood, so that they can be collected and stored away for the future. I will be going to Indiana on May 13th for the stem cell "harvest" and the first of two rounds of high dose carboplatin and etoposide, after which my stem cells will be reinfused to reconstitute my immune system, which will have been decimated by the chemo. The dosage that they will be giving me is something like four times what I have received in the past, which I can tell you fills me with joy. I return to California around June 1st, and then head back to Indiana on June 13th for the second round. After recovering for 4-6 weeks, I will likely need surgery to remove any residual masses, but if the past month is any indication, that decision will not be a clear one.
There are other reasons to be in Indiana as well. I will be severely immunocompromised, and keeping my environment as clean as possible will be much easier in Indiana than in Manhattan. The overall fun level may be lower, but I am not exactly going to be partying all night long, and can't eat out anyway, so the lower overall stress level is probably more important. My mother, who will be taking care of me, will have an infinitely easier time of it in Indianapolis. For whatever reason the timing is better with Indiana's protocol: it is nice that the first month can be done at home, and also great that even if we go ahead with the surgery, I will likely get back to health in time to start school again where I left off in November.
My new doctor, Larry Einhorn (the only Jew in Indiana?), with Lance Armstrong
Monday, April 16, 2007
staple gun
I am sitting in a hotel room across from the Indiana University Medical Center, waiting for the Ambien to kick in, so it's gonna be brief entry, and may get a litte loopy near the end. The past few days have been a maelstrom of taxis, airports, jets, airports, taxis, hotels, paperwork, and hospitals. Sounds miserable, I know, and a lot of it has not been fun, but some of it has: I blitzed midtown manhattan one night with an old friend, and I did make it, by the skin of my teeth, to my best friend from high school's beautiful wedding in San Francisco, and had a romp across the dance floor and through a very very late night, celebrating LIFE (selected pictures to follow, once I get my camera hooked up here). After one day in Palo Alto, mostly spent apologizing to visiting friends for being less than awake due to the two previous night's festivities, we jetted off to Indiana (of all places!) to continue our marathon quest to leave no stone unturned, and get as many expert opinions as possible in one week.
In brief, the Sloan Kettering people said that I need high dose chemotherapy with stem cell transplant. For a few weeks, they would be giving taxol and ifosfamide while taking blood very frequently to harvest and store the stem cells that float around in our blood, and which can, when re-implanted, reconstitute the hematopoietic (blood-producing) tissue necessary to boost my red cell, white cell, and platelet counts, which will fall dramatically low after the huge doses of carboplatin and etoposide are given. Depending on how well I tolerate the treatment, it either keeps getting worse, or doesn't. Horribly enough, if I respond without too much difficulty, then they give me more to smash it that much harder. I don't think that there is any reason that we wouldn't do the treatment in New York if we lived there. And despite the fact that I LOVE New York City, the incredible rift it would cause my family, the distance from all of my support system except for my mother, the fact that New York City is no place to be immuno-compromised (no subway, no taxis, no bars, no pizza, no museums, no drugs...), plus the enormous expense of relocating for a minimum of six months (and possibly much longer than that, depending on what side of the 50-50 split I'm in), means that I don't think that it is likely to happen there. But their science is the gold standard in these circles, and they have set the bar high. We are also putting together a bit more piecemeal all of our questions and concerns about USC/Norris, City of Hope National Medical Center, UCSF, Indiana, and Stanford, and bouncing all of the minutia around, hoping to come out with a reasoned idea of what to do next. We meet with Einhorn in Indiana tomorrow, and then fly home on Wednesday, and will hopefully be meeting with Srinivas at Stanford that afternoon as soon as the plane lands. How many of these have they done? How many stem cell transplants? How many high-dose chemo regimens? How many of each have been for germ cell tumors? Will the doctor be out of town? Moving hospitals? Who is the backup doctor? How long has that doctor been involved? Which high-dose regimen would they be using? Why that one, and not this one? What is the evidence for us doing this versus that? What could the side effects be? And? Yeah, OK. What else? ugh. And what if that doesn't work? How will you know if it has or hasn't worked? What have you got for us then? And why should we do it that way and not this other way?
Sometimes it is appropriate to go one step at a time, and cross bridges when they need to be crossed, but sometimes that's just baloney. Sometimes, in order to make a good decision NOW, you have to have a long-term vision of where things could go, because inevitably decisions made now will affect the future drastically. I know that there are a lot of squirrily, slippity variables to nail down, so where is the staple gun? And don't tell me you left it at home, because I will fly back across the country to get it. Twice, if need be.
In brief, the Sloan Kettering people said that I need high dose chemotherapy with stem cell transplant. For a few weeks, they would be giving taxol and ifosfamide while taking blood very frequently to harvest and store the stem cells that float around in our blood, and which can, when re-implanted, reconstitute the hematopoietic (blood-producing) tissue necessary to boost my red cell, white cell, and platelet counts, which will fall dramatically low after the huge doses of carboplatin and etoposide are given. Depending on how well I tolerate the treatment, it either keeps getting worse, or doesn't. Horribly enough, if I respond without too much difficulty, then they give me more to smash it that much harder. I don't think that there is any reason that we wouldn't do the treatment in New York if we lived there. And despite the fact that I LOVE New York City, the incredible rift it would cause my family, the distance from all of my support system except for my mother, the fact that New York City is no place to be immuno-compromised (no subway, no taxis, no bars, no pizza, no museums, no drugs...), plus the enormous expense of relocating for a minimum of six months (and possibly much longer than that, depending on what side of the 50-50 split I'm in), means that I don't think that it is likely to happen there. But their science is the gold standard in these circles, and they have set the bar high. We are also putting together a bit more piecemeal all of our questions and concerns about USC/Norris, City of Hope National Medical Center, UCSF, Indiana, and Stanford, and bouncing all of the minutia around, hoping to come out with a reasoned idea of what to do next. We meet with Einhorn in Indiana tomorrow, and then fly home on Wednesday, and will hopefully be meeting with Srinivas at Stanford that afternoon as soon as the plane lands. How many of these have they done? How many stem cell transplants? How many high-dose chemo regimens? How many of each have been for germ cell tumors? Will the doctor be out of town? Moving hospitals? Who is the backup doctor? How long has that doctor been involved? Which high-dose regimen would they be using? Why that one, and not this one? What is the evidence for us doing this versus that? What could the side effects be? And? Yeah, OK. What else? ugh. And what if that doesn't work? How will you know if it has or hasn't worked? What have you got for us then? And why should we do it that way and not this other way?
Sometimes it is appropriate to go one step at a time, and cross bridges when they need to be crossed, but sometimes that's just baloney. Sometimes, in order to make a good decision NOW, you have to have a long-term vision of where things could go, because inevitably decisions made now will affect the future drastically. I know that there are a lot of squirrily, slippity variables to nail down, so where is the staple gun? And don't tell me you left it at home, because I will fly back across the country to get it. Twice, if need be.
Wednesday, April 11, 2007
Part IV
In my experience, it is never a good thing when the doctor calls.
The last few days have been extremely difficult. All of the uncertainty that I had about putting my life back together has sunk quickly into obsolescence in the face of new data: my tumor markers are back on the rise. The chemo did not do a complete job. There is definitely live cancer growing, as we speak. An already tense and uncertain time has become more scary, but also more focused as I figure out what to do next. Yesterday I spent all day in the hospital, getting blood tests, meeting with the oncologist, waiting for an ultrasound, then for an MRI, all the while furiously chasing down my medical records, spread between the USC cancer center, USC Family Medicine, USC Radiology, Stanford, and UCSF. I have a CT this afternoon, before flying out on the redeye to an emergency appointment at Memorial Sloan Kettering in New York on Thursday. I may or may not be anywhere in particular between then and my appointment in Indianapolis on Monday. Maybe I will be able to make it to a dear friend's wedding this weekend in San Francisco. And maybe not.
What is next is unclear. "Salvage" chemotherapy, "clinical trials," and other such niceties may await. The currently-accepted dogma seems to be that as long as my tumor markers are above normal, I am "no longer a surgical candidate," although the people in Indiana seem to think that maybe that option is not out.
I am packing now, for an undetermined period of time. It is still cold in New York, but maybe by the time I finally leave, it will be warm. But I could be back in LA next week. Should I unplug my refrigerator? Finally move out from my apartment? Find a subletter? Or just leave it? The last option, for now, is the easiest, and therefore wins.
Emotions are unpredictable these days. I find my psyche trying out various reactions, briefly letting myself feel each, expecting that one or many of them will sink in eventually, and others be quietly retired. I find strength in having gotten this far in such good shape. I am outraged at everything that has gone wrong on many levels, and also understand that no system is perfect. I could keep writing, and will, but I've got too much to do today to get ready. OK. Deep breath. Here we go again.
The last few days have been extremely difficult. All of the uncertainty that I had about putting my life back together has sunk quickly into obsolescence in the face of new data: my tumor markers are back on the rise. The chemo did not do a complete job. There is definitely live cancer growing, as we speak. An already tense and uncertain time has become more scary, but also more focused as I figure out what to do next. Yesterday I spent all day in the hospital, getting blood tests, meeting with the oncologist, waiting for an ultrasound, then for an MRI, all the while furiously chasing down my medical records, spread between the USC cancer center, USC Family Medicine, USC Radiology, Stanford, and UCSF. I have a CT this afternoon, before flying out on the redeye to an emergency appointment at Memorial Sloan Kettering in New York on Thursday. I may or may not be anywhere in particular between then and my appointment in Indianapolis on Monday. Maybe I will be able to make it to a dear friend's wedding this weekend in San Francisco. And maybe not.
What is next is unclear. "Salvage" chemotherapy, "clinical trials," and other such niceties may await. The currently-accepted dogma seems to be that as long as my tumor markers are above normal, I am "no longer a surgical candidate," although the people in Indiana seem to think that maybe that option is not out.
I am packing now, for an undetermined period of time. It is still cold in New York, but maybe by the time I finally leave, it will be warm. But I could be back in LA next week. Should I unplug my refrigerator? Finally move out from my apartment? Find a subletter? Or just leave it? The last option, for now, is the easiest, and therefore wins.
Emotions are unpredictable these days. I find my psyche trying out various reactions, briefly letting myself feel each, expecting that one or many of them will sink in eventually, and others be quietly retired. I find strength in having gotten this far in such good shape. I am outraged at everything that has gone wrong on many levels, and also understand that no system is perfect. I could keep writing, and will, but I've got too much to do today to get ready. OK. Deep breath. Here we go again.
Thursday, April 5, 2007
One year anniversary
It was on the night of April 3, 2006 that I found a lump in my right testicle. The year that followed that horrible night was one that will mark the rest of my life. It was my own personal 9/11. Damage has been done. But the gash in my groin, four puncture marks in my belly, my ringing ears, my tingling fingers and toes, and my scraggly reflection all remind me less of why they appeared than of a more basic fact: I am alive, god dammit! There is no question that it is because of all of your help and love that this year, with all its horrors, has left as few scars as it has.
The content of yesterday’s meeting with Dr Skinner, the surgeon at USC, came as a complete and total surprise. I had thought that I had driven down to LA in order to hear Skinner’s surgical plan, and if not compare it to the one presented to me at Stanford days before, then at least to evaluate the interest, investment, and preparation of each team, in order to finally make a choice as to who to let slice me up. It was quite shocking, then, when Skinner told me that he did not think that I should have surgery at all. In fact, this famous and experienced surgeon told me that he didn’t want to operate because the only way that he could be confident that he had removed all of the tumor would be to REMOVE my bladder and rectum in the process. And considering that the likelihood is low that there is any live or quiescent tumor still hanging around, the collateral damage would clearly be unacceptable. The option of going in and getting everything that could be removed easily was also deemed a non-starter, since any future surgery would be made much more difficult by the resulting scar tissue. So the plan that he recommended is one of long-term surveillance. There apparently is something like an 80% chance (though nobody really knows) that all that gunk in there is dead anyway, and that any surgery would have been superfluous. There is a very small chance that there is still live tumor which somehow survived the chemo, which will be monitored with frequent blood tests; additionally, there is something like a 20% chance that there is quiescent teratoma hanging out, which could sit there forever, or grow slowly, or undergo “malignant degeneration” and turn nasty again. This will be followed by frequent CTs, and if there is any growth, they would at that point go in and do the surgery that they needed to do to remove the mass. This approach being radically different from Stanford’s, we asked for a referral for a third opinion, and were directed to a team in Indiana, who according to Skinner are the only people with more experience than him at treating testicular cancer. We will be flying out there in a few weeks. In the meantime, though, the thorough explanation I got from Skinner has convinced me not to do the surgery that we had tentatively scheduled for next week at Stanford.
This all seems like bad news, except it isn’t, exactly. After stumbling around in a daze for a while, I realized with the help of some wise friends that even if I went through with the surgery, there would be no guarantee that all of the tumor had actually been removed, and I would still have to be going in for regular screening tests. This way, the only real difference to my daily life is that I don’t have to undergo a gigantic, dangerous, painful, and disfiguring surgery. While the risk of recurrence may be higher because the bulk of the mass didn’t get taken out, that risk is unknowable to begin with, and remains just as vague. The axe hanging over my head will not be any more or less scary.
A long story made short is that things are so ugly in there that… I can just go back to my life?! Huh?! You mean I live in LA again? (Oh, no!) That all of a sudden, I am expected to be an adult again? To collect quarters for laundry, to cook for one, and to wash the lonely dish by hand? I sit in (what apparently is) my apartment, alone, and realize that this last eighteen hours is the longest time that I have spent by myself in a year and a half. What does this mean for the even closer relationship that I have with my parents, and for the many relationships, new and old, that I have with friends in the Bay Area? Who am I, after all of this?
In this empty, quiet apartment, I hope to have the space to find out.
The content of yesterday’s meeting with Dr Skinner, the surgeon at USC, came as a complete and total surprise. I had thought that I had driven down to LA in order to hear Skinner’s surgical plan, and if not compare it to the one presented to me at Stanford days before, then at least to evaluate the interest, investment, and preparation of each team, in order to finally make a choice as to who to let slice me up. It was quite shocking, then, when Skinner told me that he did not think that I should have surgery at all. In fact, this famous and experienced surgeon told me that he didn’t want to operate because the only way that he could be confident that he had removed all of the tumor would be to REMOVE my bladder and rectum in the process. And considering that the likelihood is low that there is any live or quiescent tumor still hanging around, the collateral damage would clearly be unacceptable. The option of going in and getting everything that could be removed easily was also deemed a non-starter, since any future surgery would be made much more difficult by the resulting scar tissue. So the plan that he recommended is one of long-term surveillance. There apparently is something like an 80% chance (though nobody really knows) that all that gunk in there is dead anyway, and that any surgery would have been superfluous. There is a very small chance that there is still live tumor which somehow survived the chemo, which will be monitored with frequent blood tests; additionally, there is something like a 20% chance that there is quiescent teratoma hanging out, which could sit there forever, or grow slowly, or undergo “malignant degeneration” and turn nasty again. This will be followed by frequent CTs, and if there is any growth, they would at that point go in and do the surgery that they needed to do to remove the mass. This approach being radically different from Stanford’s, we asked for a referral for a third opinion, and were directed to a team in Indiana, who according to Skinner are the only people with more experience than him at treating testicular cancer. We will be flying out there in a few weeks. In the meantime, though, the thorough explanation I got from Skinner has convinced me not to do the surgery that we had tentatively scheduled for next week at Stanford.
This all seems like bad news, except it isn’t, exactly. After stumbling around in a daze for a while, I realized with the help of some wise friends that even if I went through with the surgery, there would be no guarantee that all of the tumor had actually been removed, and I would still have to be going in for regular screening tests. This way, the only real difference to my daily life is that I don’t have to undergo a gigantic, dangerous, painful, and disfiguring surgery. While the risk of recurrence may be higher because the bulk of the mass didn’t get taken out, that risk is unknowable to begin with, and remains just as vague. The axe hanging over my head will not be any more or less scary.
A long story made short is that things are so ugly in there that… I can just go back to my life?! Huh?! You mean I live in LA again? (Oh, no!) That all of a sudden, I am expected to be an adult again? To collect quarters for laundry, to cook for one, and to wash the lonely dish by hand? I sit in (what apparently is) my apartment, alone, and realize that this last eighteen hours is the longest time that I have spent by myself in a year and a half. What does this mean for the even closer relationship that I have with my parents, and for the many relationships, new and old, that I have with friends in the Bay Area? Who am I, after all of this?
In this empty, quiet apartment, I hope to have the space to find out.
Monday, March 26, 2007
A month of recuperation
It has now been more than a month since my last chemotherapy treatment, and the once-incessant reminders of having been poisoned – crazymaking itchyness, neuropathic hand pain, a constantly runny nose, etc, etc, etc – have almost completely dissappeared. I am slowly getting used to my (relatively) hairless reflection, and am very much enjoying only shaving once a week. The most obvious physical feature that remains is my pot belly, which is about equal parts residual tumor mass and chub from sitting on my butt and eating rich food. I prefer to think of it as a wise plan to stock up on resources before my upcoming surgery, which will be a doozy.
Here’s the scoop: there is still a bunch of gunk in there, some draped over the top of the liver, some in the center of the liver where all the lobes and the vessels come together, a big glob down at the base of the pelvis between my rectum and bladder and up around my large intestine, and maybe some little bits scattered around along the posterior body wall. It isn’t clear from the CT scan who much of it is necrotic tumor, already killed off by the chemo but not yet cleared from my body, and how much of it is live tumor or teratoma, which could hang out for years before becoming a problem. Everyone agrees, though, that it needs to come out. The surgery will be long, difficult, and there are many things that could go wrong. To list them all would be unnecessarily terrifying.
With this knowledge, I have been maybe more than a little of a pain in the butt to my doctors, trying to evaluate who is most qualified to turn me inside out. One would think that it shouldn’t be too hard to find out how many surgeries of a particular kind a given surgeon as performed, but this turns out to be wishful thinking. As if that isn’t frustrating enough, it turns out that nobody has actually done a surgery like this before! Apparently, the locations of these tumors is unique in this type of disease. Normally, it spreads within the lymphatic system from the testis to the retroperitoneal lymph nodes, then to the hilar (base of the lung) lymph nodes, and then finally into the bloodstream, where it is disseminated all over the body. This is not what happened in my case: there was nothing found at the hilar lymph nodes, and nothing within my brain or any other organs, where it “should” have been found. Confusingly, though, there are tumors not within organs but ON their external surfaces, within my abdominal cavity. How did they get there? While nobody knows for sure, the signs are pointing to some of the lymphatic fluid having leaked out of an affected lymph node or vessel during the retroperitoneal lymph node dissection (RPLND) which I had done at UCSF last June. Apparently when the surgeon who performed that surgery found out, he was devastated. This is such a unique case that it has been presented a number of times at Grand Rounds both at Stanford and at USC/Norris, and should be written up as a case report when it’s over. My oncologist at Norris told me that his goal was to get me through this so that I could write up the case report myself, which I agreed to, providing that I get first authorship, and have him, the Stanford oncologist, and the UCSF surgeon as co-authors. Look out, JAMA.
It continues to be very difficult to decide where to get care. I am not yet sure whether it will take place at Stanford or at USC/Norris, and I have a couple of appointments over the next week to finally nail this down. At this point, it seems that both teams are equally qualified, insofar as the almost non-existent data shows. Again I am stuck basing a potentially life-changing decision on anecdote and opinion, which is quite disturbing.
In the meantime, I have been obstinately having a blast. Traveling with a wonderful friend, Maui was lovely and luscious and synaesthetic – the air danced, the water sang, the mountain shimmered, the lava spoke, the jungle felt happy. Six days were packed with adventure, partying, melting relaxation, and welcoming locals. We swam with giant sea turtles, saw both sunrise and sunset from the summit of ten thousand foot Haleakala, and weathered a fantastic rainstorm while camping on the edge of a cliff past Hana.
Refusing to let a return to the mainland slow me down, I then drove up to Lake Tahoe to spend a debaucherous weekend with reunited members of the UC Berkeley Ski Team. I did not get a single day of skiing in last year, and this was of course the first time this year that I have been able to get up to the mountains. Having been practically completely stationary for five months and still recovering from having my red blood cell count cut in half by the chemo, I was not at the peak of my skiing form, to say the least. But every burning turn, every winded pause, with trembling legs threatening to give out, was cause for celebration, and I spent the entire weekend with a stupid grin plastered across my face.
Here’s the scoop: there is still a bunch of gunk in there, some draped over the top of the liver, some in the center of the liver where all the lobes and the vessels come together, a big glob down at the base of the pelvis between my rectum and bladder and up around my large intestine, and maybe some little bits scattered around along the posterior body wall. It isn’t clear from the CT scan who much of it is necrotic tumor, already killed off by the chemo but not yet cleared from my body, and how much of it is live tumor or teratoma, which could hang out for years before becoming a problem. Everyone agrees, though, that it needs to come out. The surgery will be long, difficult, and there are many things that could go wrong. To list them all would be unnecessarily terrifying.
With this knowledge, I have been maybe more than a little of a pain in the butt to my doctors, trying to evaluate who is most qualified to turn me inside out. One would think that it shouldn’t be too hard to find out how many surgeries of a particular kind a given surgeon as performed, but this turns out to be wishful thinking. As if that isn’t frustrating enough, it turns out that nobody has actually done a surgery like this before! Apparently, the locations of these tumors is unique in this type of disease. Normally, it spreads within the lymphatic system from the testis to the retroperitoneal lymph nodes, then to the hilar (base of the lung) lymph nodes, and then finally into the bloodstream, where it is disseminated all over the body. This is not what happened in my case: there was nothing found at the hilar lymph nodes, and nothing within my brain or any other organs, where it “should” have been found. Confusingly, though, there are tumors not within organs but ON their external surfaces, within my abdominal cavity. How did they get there? While nobody knows for sure, the signs are pointing to some of the lymphatic fluid having leaked out of an affected lymph node or vessel during the retroperitoneal lymph node dissection (RPLND) which I had done at UCSF last June. Apparently when the surgeon who performed that surgery found out, he was devastated. This is such a unique case that it has been presented a number of times at Grand Rounds both at Stanford and at USC/Norris, and should be written up as a case report when it’s over. My oncologist at Norris told me that his goal was to get me through this so that I could write up the case report myself, which I agreed to, providing that I get first authorship, and have him, the Stanford oncologist, and the UCSF surgeon as co-authors. Look out, JAMA.
It continues to be very difficult to decide where to get care. I am not yet sure whether it will take place at Stanford or at USC/Norris, and I have a couple of appointments over the next week to finally nail this down. At this point, it seems that both teams are equally qualified, insofar as the almost non-existent data shows. Again I am stuck basing a potentially life-changing decision on anecdote and opinion, which is quite disturbing.
In the meantime, I have been obstinately having a blast. Traveling with a wonderful friend, Maui was lovely and luscious and synaesthetic – the air danced, the water sang, the mountain shimmered, the lava spoke, the jungle felt happy. Six days were packed with adventure, partying, melting relaxation, and welcoming locals. We swam with giant sea turtles, saw both sunrise and sunset from the summit of ten thousand foot Haleakala, and weathered a fantastic rainstorm while camping on the edge of a cliff past Hana.
Refusing to let a return to the mainland slow me down, I then drove up to Lake Tahoe to spend a debaucherous weekend with reunited members of the UC Berkeley Ski Team. I did not get a single day of skiing in last year, and this was of course the first time this year that I have been able to get up to the mountains. Having been practically completely stationary for five months and still recovering from having my red blood cell count cut in half by the chemo, I was not at the peak of my skiing form, to say the least. But every burning turn, every winded pause, with trembling legs threatening to give out, was cause for celebration, and I spent the entire weekend with a stupid grin plastered across my face.
Thursday, February 22, 2007
update from my mom
Hello friends and loved ones,
Joshua's last chemo treatment ended today at Stanford! We are rejoicing that this is the last of the eight planned chemo treatments.
But, as many of you suspected, we are now at the point where planning for possible surgery is in process. The masses residing on his liver and near the rectum are still larger than 3 cm, which is the arbitrary size for removing what we hope is only necrotic tissue from the body after chemotherapy.
The reason for removing it is that while the nonseminomatous cancer cells are probably/hopefully all dead from the chemo, the teratoma cells, which were a component of the original tumor, do not respond to chemo. So while the teratoma (if any is present in the metastases, which there is no way of knowing) may not be dangerous now, it can become so later. Thus, leaving the masses may mean leaving the teratoma a nest to grow and become a problem further down the road.
The oncologist here has requested that the liver surgeons and the medical oncology surgeons be consulted on the feasiblity of surgery, since the locations of the masses are not simple to access, and also to hopefully coordinate different surgical teams so that only one surgery is necessary, instead of going in twice.
So while we are hoping that the necrotic tissue will miraculously all melt away before the next CT scan in 4 weeks, surgery might be on the schedule, probably sometime after March 26. We are not sure whether this will be in Palo Alto, or in LA. This decision depends on what we find out about the doctors: we are looking for the best team. If any of you have first hand experience with the surgical oncology teams/systems at Stanford, UCSF, or Norris, please weigh in. (Please, no rooting for DC or Boston!)
Josh is planning a trip to Hawaii with an old friend, and his oncologists agree that it's okay for him to travel mid-March. So, he'll be leaving for a week or so around March 15 or thereabouts, for a well-deserved holiday after nearly a year of cancer mishegas. Then he'll be coming back to either LA or Stanford, or UCSF?, for the surgery, assuming it's still necessary.
We've had a steady stream of family and friends, and amazing support through all of this. I want you to know how grateful we are.
We've received so many phone calls and lovely gifts from many of you, and I start each day with the intention of calling or sending thank you notes, or arranging to have lunch, and I am feeling guilty because I just haven't had the focus to do it: to thank you personally, and to reconnect in some way that resembles our past relationships and friendships. I hope you understand and that you know that I am functioning on a rather simple level, staying away from the computer for the most part, and not talking much on the phone if I can help it.
But as you know we are far from being hermits, and so if you are inclined to stop by, just do it. We'd love to see you in person. We are MORE OFTEN THAN NOT in party central mode,--Josh is, after all, a party animal--(though he is sometimes taking a rare, and, I might venture, a rather hairless nap, and is looking handsomely snazzy as a bald guy) but generally we are all inclined to visit. And, the hot tub awaits you. So, if you are near, and healthy, come by. And if not, please get healthy: we would love to see you soon anyway.
Joshua's last chemo treatment ended today at Stanford! We are rejoicing that this is the last of the eight planned chemo treatments.
But, as many of you suspected, we are now at the point where planning for possible surgery is in process. The masses residing on his liver and near the rectum are still larger than 3 cm, which is the arbitrary size for removing what we hope is only necrotic tissue from the body after chemotherapy.
The reason for removing it is that while the nonseminomatous cancer cells are probably/hopefully all dead from the chemo, the teratoma cells, which were a component of the original tumor, do not respond to chemo. So while the teratoma (if any is present in the metastases, which there is no way of knowing) may not be dangerous now, it can become so later. Thus, leaving the masses may mean leaving the teratoma a nest to grow and become a problem further down the road.
The oncologist here has requested that the liver surgeons and the medical oncology surgeons be consulted on the feasiblity of surgery, since the locations of the masses are not simple to access, and also to hopefully coordinate different surgical teams so that only one surgery is necessary, instead of going in twice.
So while we are hoping that the necrotic tissue will miraculously all melt away before the next CT scan in 4 weeks, surgery might be on the schedule, probably sometime after March 26. We are not sure whether this will be in Palo Alto, or in LA. This decision depends on what we find out about the doctors: we are looking for the best team. If any of you have first hand experience with the surgical oncology teams/systems at Stanford, UCSF, or Norris, please weigh in. (Please, no rooting for DC or Boston!)
Josh is planning a trip to Hawaii with an old friend, and his oncologists agree that it's okay for him to travel mid-March. So, he'll be leaving for a week or so around March 15 or thereabouts, for a well-deserved holiday after nearly a year of cancer mishegas. Then he'll be coming back to either LA or Stanford, or UCSF?, for the surgery, assuming it's still necessary.
We've had a steady stream of family and friends, and amazing support through all of this. I want you to know how grateful we are.
We've received so many phone calls and lovely gifts from many of you, and I start each day with the intention of calling or sending thank you notes, or arranging to have lunch, and I am feeling guilty because I just haven't had the focus to do it: to thank you personally, and to reconnect in some way that resembles our past relationships and friendships. I hope you understand and that you know that I am functioning on a rather simple level, staying away from the computer for the most part, and not talking much on the phone if I can help it.
But as you know we are far from being hermits, and so if you are inclined to stop by, just do it. We'd love to see you in person. We are MORE OFTEN THAN NOT in party central mode,--Josh is, after all, a party animal--(though he is sometimes taking a rare, and, I might venture, a rather hairless nap, and is looking handsomely snazzy as a bald guy) but generally we are all inclined to visit. And, the hot tub awaits you. So, if you are near, and healthy, come by. And if not, please get healthy: we would love to see you soon anyway.
Sunday, February 11, 2007
technical update: good news
My oncologist somehow materialized from the stratosphere bright eyed and bushy tailed, and having read the CT, told me that what we had seen was likely dead tumor mass. It apparently can take some time for dead tissue to be cleared away, even after tumor markers fall. So there is no change in the treatment plan, which means the cycle happening Feb 19-20-21 at Stanford will be (fingers crossed, holy water sprinkled, baruchas said, offerings burnt, voodoo dolls poked, vestal virgins... um...) the end of it! And the best news is that I still have an excuse to have a little pot belly, at least for now. I am also thrilled to say that my PICC line (the plastic tubing which has been sticking out of my arm for the past three and a half months) was finally removed, and I have been taking normal showers, unencumbered by plastic wrap and stress about having to keep my dressing dry. Just standing in the shower, under the running water, is an incredible pleasure. Hot tub, here I come! Despite all sorts of continuing and strange body issues caused by the chemo, I am ecstatic with each baby step back toward normalcy.
Wednesday, February 7, 2007
the roller coaster continues
I am back in LA, hooked up to four (4!) noise-making IV pumps, trying to ignore the tray of hospital food that makes me nauseous just looking at it, and pondering whether it is worth fighting with all of this tangled tubing in order to get myself into the shower.
While the tumor markers are both within the normal range, I had a CT scan on Monday evening in order to take a peek inside and see how things are going. The next day, a hapless resident, unfamiliar with my case, came into my room and announced the “good news!”: my tumor mass had reduced by more than 50%! It took a lot of self control not to punch him in the face, for this was not good news at all. In fact, it was terrible news. I had been led to believe that these last two rounds of chemo were basically overkill, in order to be absolutely sure that every last minute speck of nastiness had been killed off. I had begun to plan a vacation, and my re-entry into real life. The prospect of further rounds of chemo and surgery were extremely disturbing. I momentarily forgot, as did he, apparently, that he didn’t really know what he was talking about, and had no decision-making capability or responsibility. I freaked out for four hours, until the oncology fellow (further up the totem pole) poked his head in the room, and clarified things a bit (hah)”: Apparently all of the junk that is still apparent on the CT could be/but we don’t really know/might be/is probably just dead tumor, or scar tissue, and in any case decisions will probably/maybe be made based on tumor markers, which are low. But the real decision maker, the head oncologist, is in Paris for a conference, and doesn’t want to commit until he sees the CT for himself on Friday. No matter what the treatment plan becomes, this has all been unnecessary, as far as I am concerned. I understand the desire to keep a pesky patient/medical student informed about the latest results, but there also needs to be an awareness that information without context can be damaging. It was a reminder that the information contained in a patient’s chart is more than a series of chronologically organized data; these cold figures in fact represent real life dilemmas for a real person, and that the doctor must take into account the patient’s prior experience and expectations before waltzing in and dropping bombs.
This latest vague and difficult news does not lend itself to planning and prognostication. At this point, I am attempting to remain calm while waiting for more information, and trying to remain focused on the outcome that I want: to be done with this current ordeal in three weeks, and to get back to my life.
I will be out of the hospital come Thursday afternoon, with no cisplatin and amifostine to weigh down my exit. Hopefully this means a quicker and less miserable recovery. If it looks like I will be able to care for myself, I am tempted to send my mother back on up to Palo Alto and remain here in LA for the week, to re-inhabit my apartment and my life, to begin to stake some claim on being an independent 27 year old again.
While the tumor markers are both within the normal range, I had a CT scan on Monday evening in order to take a peek inside and see how things are going. The next day, a hapless resident, unfamiliar with my case, came into my room and announced the “good news!”: my tumor mass had reduced by more than 50%! It took a lot of self control not to punch him in the face, for this was not good news at all. In fact, it was terrible news. I had been led to believe that these last two rounds of chemo were basically overkill, in order to be absolutely sure that every last minute speck of nastiness had been killed off. I had begun to plan a vacation, and my re-entry into real life. The prospect of further rounds of chemo and surgery were extremely disturbing. I momentarily forgot, as did he, apparently, that he didn’t really know what he was talking about, and had no decision-making capability or responsibility. I freaked out for four hours, until the oncology fellow (further up the totem pole) poked his head in the room, and clarified things a bit (hah)”: Apparently all of the junk that is still apparent on the CT could be/but we don’t really know/might be/is probably just dead tumor, or scar tissue, and in any case decisions will probably/maybe be made based on tumor markers, which are low. But the real decision maker, the head oncologist, is in Paris for a conference, and doesn’t want to commit until he sees the CT for himself on Friday. No matter what the treatment plan becomes, this has all been unnecessary, as far as I am concerned. I understand the desire to keep a pesky patient/medical student informed about the latest results, but there also needs to be an awareness that information without context can be damaging. It was a reminder that the information contained in a patient’s chart is more than a series of chronologically organized data; these cold figures in fact represent real life dilemmas for a real person, and that the doctor must take into account the patient’s prior experience and expectations before waltzing in and dropping bombs.
This latest vague and difficult news does not lend itself to planning and prognostication. At this point, I am attempting to remain calm while waiting for more information, and trying to remain focused on the outcome that I want: to be done with this current ordeal in three weeks, and to get back to my life.
I will be out of the hospital come Thursday afternoon, with no cisplatin and amifostine to weigh down my exit. Hopefully this means a quicker and less miserable recovery. If it looks like I will be able to care for myself, I am tempted to send my mother back on up to Palo Alto and remain here in LA for the week, to re-inhabit my apartment and my life, to begin to stake some claim on being an independent 27 year old again.
Tuesday, January 23, 2007
transitions
The end of one thing is only the beginning of another. My three year relationship with Amelie has drawn to a close. While this is clearly not a good time to be rocking the boat, I decided that the stress of the status quo was more dangerous than the risk of moving on. The breakup was very traumatic for both of us, and the outcome looks like it will be much less amicable than I had hoped. It was a difficult decision to come to, horrible to actually drop the bomb, distressing to know that she is taking it badly, and sad to think about all of the things about the relationship that I loved, and will miss. But it was the right decision, and I feel that I did it honestly and lovingly (even if she doesn’t). It is deeply saddening to lose such a good friend. I can’t afford, however, to dwell on it right now. I have to remain positive, and look ahead. I am on to a new phase in my life, with new dreams to be dreamt and new plans to be made.
To give Amelie room to move out and move on, and myself a positive, controlled environment, I have relocated to Palo Alto again for three weeks, and am currently doing round 6 of chemo at Stanford. My next round will be in LA starting February 5th, and I should be down there a few days before. If you are local (LA), be prepared for a party sometime the weekend of Feb 2-4.
My white counts mysteriously having bounced back up to practically normal levels, my doctors decided that travel wasn’t too risky, and so I was cleared for a whirlwind weekend trip to New York with my parents. While going to New York is always exciting, the impetus behind the trip wasn’t pleasant: we were there to attend a memorial to a dear friend, Jeff Hoyer, who unexpectedly died of a heart attack. Huge, wild, roaring with strength and intelligence and creativity, for me he embodied New York. His energy careens on through the pulse of the city.
Working as an independent computer consultant to support his real life as an avant-garde musician, Jeff didn’t have health insurance, and didn’t heed warning signs or his friends’ admonitions to seek help. My two cents: Schwartzie’s health care plan is BS. Somebody like Jeff wouldn’t have gotten employer-based insurance, and he wouldn’t have gone to see a doctor because the minimum $5000 deductible on the individual plan wouldn’t have done squat for him until he had a diagnosis. It is a huge barrier to care. There are lots of other problems with it, but now is not the time. I’m sure I’ll be in the mood one of these days.
To give Amelie room to move out and move on, and myself a positive, controlled environment, I have relocated to Palo Alto again for three weeks, and am currently doing round 6 of chemo at Stanford. My next round will be in LA starting February 5th, and I should be down there a few days before. If you are local (LA), be prepared for a party sometime the weekend of Feb 2-4.
My white counts mysteriously having bounced back up to practically normal levels, my doctors decided that travel wasn’t too risky, and so I was cleared for a whirlwind weekend trip to New York with my parents. While going to New York is always exciting, the impetus behind the trip wasn’t pleasant: we were there to attend a memorial to a dear friend, Jeff Hoyer, who unexpectedly died of a heart attack. Huge, wild, roaring with strength and intelligence and creativity, for me he embodied New York. His energy careens on through the pulse of the city.
Working as an independent computer consultant to support his real life as an avant-garde musician, Jeff didn’t have health insurance, and didn’t heed warning signs or his friends’ admonitions to seek help. My two cents: Schwartzie’s health care plan is BS. Somebody like Jeff wouldn’t have gotten employer-based insurance, and he wouldn’t have gone to see a doctor because the minimum $5000 deductible on the individual plan wouldn’t have done squat for him until he had a diagnosis. It is a huge barrier to care. There are lots of other problems with it, but now is not the time. I’m sure I’ll be in the mood one of these days.
Monday, January 22, 2007
going... going...
mangy rat phase
dad's idea: duct tape
test strip
mom's idea: lint remover
the inevitable midway photo op
the result
Thursday, January 11, 2007
Addicted to good news
It is hard to retain perspective. I am so used to things going spectacularly well that even moderately good news is a let-down.
Monday morning I showed up for my pre-chemo blood draw and appointment with my oncologist. Since the blood work takes a few hours to get analyzed, we discussed what the plan would be depending on the results. He told me that since my tumor markers had been so low the previous week, there was a possibility that they would have fallen into the normal range by today, allowing us to skip the cisplatin (the drug that causes the most short- and long-term side effects). When we came back from lunch, the nurse told me my results: the tumor markers had continued to fall! It took a few minutes for me to explain why I wasn’t happy with this apparently great result. While they have fallen, the markers are not yet low enough to consider lightening the chemo load, which means not only another cycle of feeling awful, but yet more permanent hearing loss.
I am learning a lot about medicine these days. I have often felt, as I am sure everyone has, that my doctors were trying to leave the room as quickly as possible. I have always just assumed that they were busy, and that since I was basically healthy, that it kind of made sense that they wouldn’t spend a lot of time with me, because they had more pressing matters to attend to. When I became a cancer patient, I immediately assumed that all of a sudden I was one of those patients who was taking up their time, and that I deserved every moment of it, and more. I realized today that despite the gravity of my situation, my case is still on the lower end of the danger scale. There is a huge amount that could go wrong, and does for a lot of people. Infection, secondary cancer (caused by the treatment), both at once… It is these incredibly difficult and complicated cases that motivate, and yes, interest, my doctors. Once my diagnosis was made and a treatment plan decided upon, there was not a lot left for the doctors to do, besides be on the watch for serious side effects, and plan contingencies if things go wrong.
The medical school system is set up to cultivate this interest in extreme pathology. We spend what has seemed to be a disproportionate amount of time learning about rare but terrifying diseases, as opposed to more common but relatively benign conditions. I think that this emphasis on the dangerous and uncommon is responsible for much of the dismissive attitude that many patients feel from their doctors. During my studies, I often have found myself wondering things like “how is it that I know about temporal arteritis, but I still don’t really know what causes a headache?” These days, though, I understand a bit better why the emphasis has been placed where it is. While they are common, most headaches just hurt; temporal arteritis can make you go blind. Somehow the vastness of the gap that separates discomfort from debilitation was less distinct when I was healthy.
On the other hand, I also understand better the value of the time we spend learning how to listen to and communicate with our patients. There are plenty of supposedly qualified people around here who are absolutely incapable of answering questions directly and clearly, which causes me to lose confidence in the competence of my medical team. This stress is profoundly disturbing.
I am also learning much about the boundaries of medical knowledge, and the difference between clinical work and what we are taught. My absolute neutrophil counts (the most important number for assessing my immune status) have been all over the place, and nobody has been able to give me a clear explanation of why. It turns out that nobody really cares! The bottom line is that since my cancer is potentially curable, they are willing to push my immune system to the point of danger, because the likelihood that a secondary infection would kill me is less than the danger posed by not finishing off the last bits of tumor that may be hiding out. So while it is frustrating and not confidence-inspiring that nobody can tell me why the cell counts are what they are, I am realizing that the point-A-to-point-B logic that we are taught in medical school is really just the first step, and that in the clinic, understanding the system is only useful if it helps the patient. It is being able to know when you need more information to make a good decision that is important, not being able to reconcile the results in front of you with what it says in the textbook on your shelf.
Monday morning I showed up for my pre-chemo blood draw and appointment with my oncologist. Since the blood work takes a few hours to get analyzed, we discussed what the plan would be depending on the results. He told me that since my tumor markers had been so low the previous week, there was a possibility that they would have fallen into the normal range by today, allowing us to skip the cisplatin (the drug that causes the most short- and long-term side effects). When we came back from lunch, the nurse told me my results: the tumor markers had continued to fall! It took a few minutes for me to explain why I wasn’t happy with this apparently great result. While they have fallen, the markers are not yet low enough to consider lightening the chemo load, which means not only another cycle of feeling awful, but yet more permanent hearing loss.
I am learning a lot about medicine these days. I have often felt, as I am sure everyone has, that my doctors were trying to leave the room as quickly as possible. I have always just assumed that they were busy, and that since I was basically healthy, that it kind of made sense that they wouldn’t spend a lot of time with me, because they had more pressing matters to attend to. When I became a cancer patient, I immediately assumed that all of a sudden I was one of those patients who was taking up their time, and that I deserved every moment of it, and more. I realized today that despite the gravity of my situation, my case is still on the lower end of the danger scale. There is a huge amount that could go wrong, and does for a lot of people. Infection, secondary cancer (caused by the treatment), both at once… It is these incredibly difficult and complicated cases that motivate, and yes, interest, my doctors. Once my diagnosis was made and a treatment plan decided upon, there was not a lot left for the doctors to do, besides be on the watch for serious side effects, and plan contingencies if things go wrong.
The medical school system is set up to cultivate this interest in extreme pathology. We spend what has seemed to be a disproportionate amount of time learning about rare but terrifying diseases, as opposed to more common but relatively benign conditions. I think that this emphasis on the dangerous and uncommon is responsible for much of the dismissive attitude that many patients feel from their doctors. During my studies, I often have found myself wondering things like “how is it that I know about temporal arteritis, but I still don’t really know what causes a headache?” These days, though, I understand a bit better why the emphasis has been placed where it is. While they are common, most headaches just hurt; temporal arteritis can make you go blind. Somehow the vastness of the gap that separates discomfort from debilitation was less distinct when I was healthy.
On the other hand, I also understand better the value of the time we spend learning how to listen to and communicate with our patients. There are plenty of supposedly qualified people around here who are absolutely incapable of answering questions directly and clearly, which causes me to lose confidence in the competence of my medical team. This stress is profoundly disturbing.
I am also learning much about the boundaries of medical knowledge, and the difference between clinical work and what we are taught. My absolute neutrophil counts (the most important number for assessing my immune status) have been all over the place, and nobody has been able to give me a clear explanation of why. It turns out that nobody really cares! The bottom line is that since my cancer is potentially curable, they are willing to push my immune system to the point of danger, because the likelihood that a secondary infection would kill me is less than the danger posed by not finishing off the last bits of tumor that may be hiding out. So while it is frustrating and not confidence-inspiring that nobody can tell me why the cell counts are what they are, I am realizing that the point-A-to-point-B logic that we are taught in medical school is really just the first step, and that in the clinic, understanding the system is only useful if it helps the patient. It is being able to know when you need more information to make a good decision that is important, not being able to reconcile the results in front of you with what it says in the textbook on your shelf.
Sunday, January 7, 2007
vacation
I apologize if I’ve caused some consternation with my lack of recent postings, but I’ve got to be in a writing mood to write, if you know what I mean. I am back in LA, beginning round 5 tomorrow at Norris after having spent three weeks at home in Palo Alto, getting treatment at Stanford.
It is difficult to be back after such a wonderful vacation. I doubt I have ever had such a long period so filled with old friends, laughter, and amazing food. My mother cooked up a storm. People came to visit from across the country (the fabulous Elena Byhoff being one of them, who specifically asked to be included in that way so that searching Google for “fabulous” and “Elena” would point to her – not that the rest of you aren’t special, you’re just less demanding). We threw a twelve-hour blowout house party on the 30th, complete with fire dancers, drummers, lots of great wine, and a healing circle. Walks in the woods, a trip to the beach. Playtime in San Francisco. Nostalgia in Berkeley. And finishing it all off, a three-day slow drive down the state with my family, staying in Paso Robles and Ojai.
Even the week of treatment that I did up north was relatively easy. Being able to go home at night made all the difference. Also, the side effects of the ACE regimen were not nearly as severe as with the POMB regimen. In fact, one of the side effects is apparently amnesia, because I can’t really remember what happened. I think I was mostly just bloated and blotto. Couldn’t really do… much… at… all… and thinking… was: slow. I also got Neupogen shots once a day for four days to boost my trashed immune system (recombinant G-CSF, for those who care and know what that is), which caused some nasty bone pain in my back and pelvis for a couple of days. This was expected, because the marrow in those big “flat” bones is where most of the immune cells are produced. I had a lot of good news: I am unexpectedly not severely immunosuppressed, which is a very good thing considering the gigantic holiday parties I went to. The even better news is that my tumor markers are within striking distance of normal! The reference ranges are around 10 (don’t worry about the units), and the markers had been in the thousands and tens of thousands. They were both around 35 last week, a huge drop! Does anyone else think it is strange that I had to request that my blood work be done? Don’t my doctors care to follow these things closely? OK, maybe it wouldn’t affect the treatment plan, and it costs money, but isn’t my peace of mind worth it? Sheesh.
It is difficult to be back after such a wonderful vacation. I doubt I have ever had such a long period so filled with old friends, laughter, and amazing food. My mother cooked up a storm. People came to visit from across the country (the fabulous Elena Byhoff being one of them, who specifically asked to be included in that way so that searching Google for “fabulous” and “Elena” would point to her – not that the rest of you aren’t special, you’re just less demanding). We threw a twelve-hour blowout house party on the 30th, complete with fire dancers, drummers, lots of great wine, and a healing circle. Walks in the woods, a trip to the beach. Playtime in San Francisco. Nostalgia in Berkeley. And finishing it all off, a three-day slow drive down the state with my family, staying in Paso Robles and Ojai.
Even the week of treatment that I did up north was relatively easy. Being able to go home at night made all the difference. Also, the side effects of the ACE regimen were not nearly as severe as with the POMB regimen. In fact, one of the side effects is apparently amnesia, because I can’t really remember what happened. I think I was mostly just bloated and blotto. Couldn’t really do… much… at… all… and thinking… was: slow. I also got Neupogen shots once a day for four days to boost my trashed immune system (recombinant G-CSF, for those who care and know what that is), which caused some nasty bone pain in my back and pelvis for a couple of days. This was expected, because the marrow in those big “flat” bones is where most of the immune cells are produced. I had a lot of good news: I am unexpectedly not severely immunosuppressed, which is a very good thing considering the gigantic holiday parties I went to. The even better news is that my tumor markers are within striking distance of normal! The reference ranges are around 10 (don’t worry about the units), and the markers had been in the thousands and tens of thousands. They were both around 35 last week, a huge drop! Does anyone else think it is strange that I had to request that my blood work be done? Don’t my doctors care to follow these things closely? OK, maybe it wouldn’t affect the treatment plan, and it costs money, but isn’t my peace of mind worth it? Sheesh.
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