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.
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