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.
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