This is my last post probably through the end of the year. I leave early Tuesday for my week–long trip to Yosemite that will keep me from both my parents and computer through January 1st.
I thank those who volunteered for my call list to provide physical assistance to my parents during my absence. The information has been e-mailed to my mom, who accepted it gladly.
May your new year be happy, healthy and full of love.
Brian
Monday, December 25, 2006
See Saw
Today is another bad day. My dad looks haggard and is moving more slowly than just a couple of days ago. He did manage to come downstairs in the morning, which facilitated the consumption of the delectable pancakes my mother made for breakfast. Aside from a short stint at the tree, to receive my present to him (the wonderful and noteworthy biography of J.D. Rockefeller, Titan), he spent the bulk of the time I was there sitting in the ‘TV room’ (the small room just off the kitchen).
My mother and I took a walk around the block after eating. We’ve done this for years. As is most common these days, today our topic was my dad. Specifically his appearance and substantive decline. What was unspoken, but I know was in both our thoughts, was whether we’ve seen the high point. Have the expected palliative or retardant effects of the chemo been exhausted? Or is this just a temporary swing to the worse, to be followed by another one back to the better. Maybe we’ll know on the 7th. For now, the uncertainty is more than frustrating.
My mother and I took a walk around the block after eating. We’ve done this for years. As is most common these days, today our topic was my dad. Specifically his appearance and substantive decline. What was unspoken, but I know was in both our thoughts, was whether we’ve seen the high point. Have the expected palliative or retardant effects of the chemo been exhausted? Or is this just a temporary swing to the worse, to be followed by another one back to the better. Maybe we’ll know on the 7th. For now, the uncertainty is more than frustrating.
Anderson, Begin Again
Several times I’ve written about the M.D. Anderson Cancer Center of the University of Texas. It is one of the two best clinical oncology facilities in the United States and one of the very best in the world. As I wrote before, I’ve wanted my father to go to Anderson since he was first diagnosed. Because of its special FDA status, Anderson has clinical trial treatments unavailable anywhere else.
Their latest is the proton beam. Yes, it sounds like some fictitious weapon from an episode of Star Trek. But it’s real, in use, and to great effect. And it’s at Anderson—and apparently nowhere else (at least in the States).
Is my father a candidate for such treatment? Who knows!? (Oh, for an interrobang!) So far he has squirmed out of every argument I’ve made in favor for going to Anderson, using ill–conceived claims and counterclaims. He seems convinced that UCSF is just as good. Well, maybe now he will give that belief further consideration.
Merry Christmas.
Their latest is the proton beam. Yes, it sounds like some fictitious weapon from an episode of Star Trek. But it’s real, in use, and to great effect. And it’s at Anderson—and apparently nowhere else (at least in the States).
Is my father a candidate for such treatment? Who knows!? (Oh, for an interrobang!) So far he has squirmed out of every argument I’ve made in favor for going to Anderson, using ill–conceived claims and counterclaims. He seems convinced that UCSF is just as good. Well, maybe now he will give that belief further consideration.
Merry Christmas.
Christmas
We had a big dinner last night. There was turkey, stuffing, creamed onions—all the good stuff. It was delicious. The food was planned for ten. Eight people sat at the table. One of the missing was my good friend Sean, whom, like many people I know, is suffering through a winter cold. (I had one last week). The other absentee was my dad, who “had a bad day” yesterday, to quote my mom, and, stayed upstairs, just like at Thanksgiving. As then, I sat at the head of the table. And as then it made me feel strange, a usurper.
By “had a bad day,” my mom meant that my dad had little energy and was feeling generally poorly, including a bit nauseous. Neither she nor I want to yet accept these symptoms as anything other than transient, especially in light of his recent upswing. Hope springs eternal. But time will tell. It will be interesting to see how he is today.
As we did at Thankgiving, we took our deserts upstairs, to eat them in the company of my dad. He really enjoyed the attention and proceeded to cheerfully hold forth, as is his wont.
Later, I walked one of our guests to his car. A dear family friend, he has known my father literally for decades. I’ve known him probably thirty–five years. He remarked on my dad’s remarkable strength and will to live—which I cannot dispute—and that those may be the edge my dad needs to become an outlier, as opposed to a routine statistic. God, I hope so. I can think of no better Christmas gift next year than to have my dad still with us.
By “had a bad day,” my mom meant that my dad had little energy and was feeling generally poorly, including a bit nauseous. Neither she nor I want to yet accept these symptoms as anything other than transient, especially in light of his recent upswing. Hope springs eternal. But time will tell. It will be interesting to see how he is today.
As we did at Thankgiving, we took our deserts upstairs, to eat them in the company of my dad. He really enjoyed the attention and proceeded to cheerfully hold forth, as is his wont.
Later, I walked one of our guests to his car. A dear family friend, he has known my father literally for decades. I’ve known him probably thirty–five years. He remarked on my dad’s remarkable strength and will to live—which I cannot dispute—and that those may be the edge my dad needs to become an outlier, as opposed to a routine statistic. God, I hope so. I can think of no better Christmas gift next year than to have my dad still with us.
Saturday, December 23, 2006
Present Present
What do you give your terminally ill father for Christmas? Something he can enjoy as soon as he removes the wrapping paper. In other words, right away.
Holidays and celebrations are hard.
Holidays and celebrations are hard.
A Weighty Topic
At his maximum, at least as far as I know, my father weighed approximately 190 lbs. I think he said he was 185 lbs. early this summer, just as the cancer was beginning to grow. Admittedly, he was clearly overweight, both visually and by his body mass index. But not anymore. Now he weighs 154 lbs. and his weight continues to fall, although the rate has declined and my dad has professed a recognition of a need to eat better, to stabilize his weight. We’ll find out on January 7th whether there will be any real benefit to his pursing that goal.
Countdown
My dad will receive his third chemotherapy treatment next Thursday, December 28th, whilst I am away in the High Sierra. With her sister, Gloria, back home, my mother again will be left alone for several hours as my dad dozes through the infusion.
Then we will wait ten days.
My father will have another CAT scan on January 7th to assess the progress of the cancer and whether the chemo is having any impact. Then we’ll know for sure if his apparent resurgence is in fact because of a diminution of his tumors and/or a reduction in their metastases, or simply the consequences of the palliative effects of the treatments. The odds are vastly for the latter. At the very least we may get a timeline.
I await with morbid curiosity.
Then we will wait ten days.
My father will have another CAT scan on January 7th to assess the progress of the cancer and whether the chemo is having any impact. Then we’ll know for sure if his apparent resurgence is in fact because of a diminution of his tumors and/or a reduction in their metastases, or simply the consequences of the palliative effects of the treatments. The odds are vastly for the latter. At the very least we may get a timeline.
I await with morbid curiosity.
Friday, December 22, 2006
Out of Sight but not Out of Mind
As I’ve written previously, I will be in Yosemite betwixt the Nativity and the Rose Bowl. This blog shall lie fallow for the duration as I will be neither seeing my father during that period nor do I expect to have Internet access, other than via costly and slow dial-up access from my room at Yosemite Lodge. (Expect me to call down the mountain to Berkeley at least once a day, though. Irrespective of the expense.)
I have heard from several friends, colleagues and former students of my father with regards to providing on–demand physical assistance for my parents during my absence. I sincerely thank them! My concerns at abandoning my parents are much alleviated. However, I am still seeking to add to the call list (same link as the first on this page). I ask again: Please[removed] if you are going to be proximal to Berkeley at any time while I am to be away my trip and you would be willing to provide some physical assistance to my parents, should they need it.
View it this way: The more people who volunteer, the less the chance that your phone will ring. So c’mon! Call up other friends of my dad and encourage them to sign up! (No, you can’t assuage your guilt by just coercing others!)
I have heard from several friends, colleagues and former students of my father with regards to providing on–demand physical assistance for my parents during my absence. I sincerely thank them! My concerns at abandoning my parents are much alleviated. However, I am still seeking to add to the call list (same link as the first on this page). I ask again: Please[removed] if you are going to be proximal to Berkeley at any time while I am to be away my trip and you would be willing to provide some physical assistance to my parents, should they need it.
View it this way: The more people who volunteer, the less the chance that your phone will ring. So c’mon! Call up other friends of my dad and encourage them to sign up! (No, you can’t assuage your guilt by just coercing others!)
Thursday, December 21, 2006
Rumination
My mother’s sister, my Aunt Gloria, has returned to her home in New Jersey. I know that my mother will miss her companionship and support.
I spent much of my contact with my aunt scrutinizing her. I was looking for signs of what to expect. Somewhat out of curiosity but more in hopes of emotionally preparing myself for what is to come. Her diagnosis for stage 4 small cell lung cancer came more than ten months before my dad’s. She underwent several rounds of chemo—how natural it is to use the shorthand now—as well as radical surgery to remove a diseased lobe of her lung.
Alas, I was unsatisified. Gloria has faired much better than my dad. Her cancer hadn’t metasticized before treatment began. So she’s up and around. She even traveled to Europe with my parents late last summer. If there are signs of the trauma she experienced, I cannot detect them.
Footnote: I used ‘alas’ above with frustration for the employment of it admittedly created a semantic conundrum. Then again, maybe I’m just a bit angered by the inequity... not that I wish worse for Gloria but solely better for my dad.
I spent much of my contact with my aunt scrutinizing her. I was looking for signs of what to expect. Somewhat out of curiosity but more in hopes of emotionally preparing myself for what is to come. Her diagnosis for stage 4 small cell lung cancer came more than ten months before my dad’s. She underwent several rounds of chemo—how natural it is to use the shorthand now—as well as radical surgery to remove a diseased lobe of her lung.
Alas, I was unsatisified. Gloria has faired much better than my dad. Her cancer hadn’t metasticized before treatment began. So she’s up and around. She even traveled to Europe with my parents late last summer. If there are signs of the trauma she experienced, I cannot detect them.
Footnote: I used ‘alas’ above with frustration for the employment of it admittedly created a semantic conundrum. Then again, maybe I’m just a bit angered by the inequity... not that I wish worse for Gloria but solely better for my dad.
Short & Bittersweet
The tree is up and decorated. Cards and gifts are arriving from far–flung originations. Friends have been invited and a big dinner planned. My father is dying. Christmas bodes strange.
Wednesday, December 20, 2006
Little Things, Postscript
I want to specify the bar concerning topics on which I report, lest you think that I am getting too microscopic or too graphic in my details, such as in my previous post. With due deference to my parents’ privacy, especially my dad’s, I feel it appropriate to report on any aspect of my father’s illness and decline that would be in evidence if you were to visit him at his home. This includes mechanical facilitation and outward physiological changes. Beyond that, I will also report on his various diagnoses as these define the scope and severity of his disease.
Little Things
Yesterday I wrote how things seem pretty much consistent. However, there are still numerous small changes and it is in their cumulation that the tale is now being told.
I went up to my parents’s home last night—yes, literally up, since I live in the Berkeley flats and they live, lordly, up in the hills. Everything seemed much as it had on Monday, save that when I went to one of the bathrooms on the second floor, the one my father uses most frequently, I noticed a riser seat had been placed on the toilet and a new steel grab bar bolted to the wall adjacent. I predict the appearance of similar conveniences in the downstairs bathroom, once my Aunt Gloria goes home.
We are still waiting for the handicapped license plates for my father’s car.
I went up to my parents’s home last night—yes, literally up, since I live in the Berkeley flats and they live, lordly, up in the hills. Everything seemed much as it had on Monday, save that when I went to one of the bathrooms on the second floor, the one my father uses most frequently, I noticed a riser seat had been placed on the toilet and a new steel grab bar bolted to the wall adjacent. I predict the appearance of similar conveniences in the downstairs bathroom, once my Aunt Gloria goes home.
We are still waiting for the handicapped license plates for my father’s car.
Tuesday, December 19, 2006
Status Quo
There really isn’t much to report these days. My dad’s outward appearance seems to be pretty consistent. But we simply do not know what is going on with the cancer inside him. It’s almost impossible to guess without some sort of additional radiographic examination. I suspect that this resurgence will prove short–lived and that a rapid decline is in the not too distant future, if his progress hews typical. Watch this site for further, inevitable developments.
Frustration
Try as I might, I cannot seem to add my own photo to my map. There seems to be a bug in Frappr (the Web site that hosts the map). But I’m working with their technical support people to remedy the problem. Don’t let my frustrations stop you. I’m pleased to see that a couple of photos have already been added.
Monday, December 18, 2006
Don’t be Shy!
Thanks to those who have already stuck a pin in the map. Please include at least your name with your pin. It will be much more meaningful to my dad.
Where B U?
I’ve been a little disappointed with the response to my Arbitron post of a couple of days back. So I thought I’d try something a little more obvious, cool and inviting. Voila! Don’t be afraid! It’s fun! The whole planet is available. Simply drag the map with your mouse. Then plant a pin, add your name and a photo if you like. My mom will be able to show the map to my dad using her laptop.
P.S. If you can’t decipher text message shorthand, the label of this post reads “Where be you?” And see also this.
P.S. If you can’t decipher text message shorthand, the label of this post reads “Where be you?” And see also this.
Sunday, December 17, 2006
Mao’s the Pity
I and nearly all my male friends are losing or have even lost our hair. It’s a function of age, having an XY chromosome pair and a compound scarily named dihydrotestosterone (DHT) Invariably we lose it in a manner called ‘male pattern baldness’. (The medical term is androgenic alopecia.) You see it every day. It starts with a thinning on top and at the front. Eventually a bald spot appears at the back and finally the hair is reduced to a fringe around the head. Like this man.
My father is an exception. He started losing his hair in his forties. But his manner of losing it, gradually receding front–to–back, without a bald spot, left him looking distinguished and younger than his years.
Chemotherapy has many side effects. Nausea and loss of appetite are first among them. Probably the second is the temporary impairment of the fast growing cells within hair folicles, notably those on the head, but practically anywhere else on the body is possible, including eye brows. In other words, chemotherapy renders its recipients bald.
My dad is losing his hair. All of it. That, plus the weight loss, plus a small chronic tremor I’ve noticed (it could be just an amplification of essential tremor), are virtually aging him at least a decade in just a few weeks. He appears slightly older and more frail each time I see him. It is disconcerting and disquieting.
His compensations for the most visually impactful of these changes are millinery: He has taken to wearing a beautiful black Basque beret (Scottish: ‘tam’) recently given to him by a friend. The other chapeau is a relic from a trip my dad took to the People’s Republic of China in the early 1970s, at the behest of the United States’ National Academy of Sciences. It’s an authentic Mao cap. Which, I must admit, looks pretty good on him. Especially if donned at a rakish, er capitalistic angle.
My father is an exception. He started losing his hair in his forties. But his manner of losing it, gradually receding front–to–back, without a bald spot, left him looking distinguished and younger than his years.
Chemotherapy has many side effects. Nausea and loss of appetite are first among them. Probably the second is the temporary impairment of the fast growing cells within hair folicles, notably those on the head, but practically anywhere else on the body is possible, including eye brows. In other words, chemotherapy renders its recipients bald.
My dad is losing his hair. All of it. That, plus the weight loss, plus a small chronic tremor I’ve noticed (it could be just an amplification of essential tremor), are virtually aging him at least a decade in just a few weeks. He appears slightly older and more frail each time I see him. It is disconcerting and disquieting.
His compensations for the most visually impactful of these changes are millinery: He has taken to wearing a beautiful black Basque beret (Scottish: ‘tam’) recently given to him by a friend. The other chapeau is a relic from a trip my dad took to the People’s Republic of China in the early 1970s, at the behest of the United States’ National Academy of Sciences. It’s an authentic Mao cap. Which, I must admit, looks pretty good on him. Especially if donned at a rakish, er capitalistic angle.
Saturday, December 16, 2006
Arbitron
I’m rather curious to find out the extent of my audience. Please drop me an e-mail to let me know you’re reading this blog. Even if you’ve already told me in person or in a recent e-mail. Also, let me know if you are serving as a relay for one or more people in the field, please.
Thanks,
Brian
P.S. For those who don’t know, Arbitron is an American company that provides television viewer and radio listener ratings data. One of the ways they compile this market research information is by calling consumers and asking them about their listening habits.
Thanks,
Brian
P.S. For those who don’t know, Arbitron is an American company that provides television viewer and radio listener ratings data. One of the ways they compile this market research information is by calling consumers and asking them about their listening habits.
Regression
This evening my mom, her visiting sister, my Aunt Gloria, my girlfriend (a truly cheap sounding word, given the depths of my feelings for her, alas) and I will together attend a party in San Francisco. My dad will stay home, unable to join us. Which is a shame because he has enjoyed prior editions of this annual soirée and many of his friends and colleagues will be in attendance. But times have changed. I and many others will miss his estimable presence.
I was at my parents’s home on Wednesday night when I overheard a superficially humorous telephone exchange between my dad and one of his favorite former graduate students.
Young humans are quite incapable of caring for themselves. Such that when their parents take their leave for an evening’s well deserved rest, invariably outside care must be sought to look after the young humans. To make sure that they eat their fish sticks, that they correctly put on their jammies, and that they wash, brush and floss before their bedtime. Though it is often a bit of a misnomer, especially with older children, such caretakers are invariably called babysitters. At least here in the U.S. I know there are many overseas readers, some of whom I’m sure even had full–time governesses to see after them, although surely not ones with magical brollies.
But I digress...
Well, perhaps not so much... The reason for my dad’s call to his former student was to ask the student, in my father’s own words: “to come and babysit me while my wife is out Saturday evening.” The student happily allowed that he could come and look after my dad. This made my father also happy. I am sure his sitter will see to it that my dad is well looked after and properly tucked into bed at the appropriate time. Maybe he’ll even get a bedtime story. (‘There once was a big, old Australopithicus Afarensis named Bob....’)
As charming and cute as the foregoing seems on the surface, it underscores the illusory quality of my dad’s seemingly good health. It also bolsters the import of yesterday’s post (which you should be sure and read). And finally, it reminds us of the seriousness of the reason for his to be looked after, and that just depresses me. And we’re just at the start of this fun house ride, folks. Hang on tight! It’s gonna get reeeally bumpy!
I was at my parents’s home on Wednesday night when I overheard a superficially humorous telephone exchange between my dad and one of his favorite former graduate students.
Young humans are quite incapable of caring for themselves. Such that when their parents take their leave for an evening’s well deserved rest, invariably outside care must be sought to look after the young humans. To make sure that they eat their fish sticks, that they correctly put on their jammies, and that they wash, brush and floss before their bedtime. Though it is often a bit of a misnomer, especially with older children, such caretakers are invariably called babysitters. At least here in the U.S. I know there are many overseas readers, some of whom I’m sure even had full–time governesses to see after them, although surely not ones with magical brollies.
But I digress...
Well, perhaps not so much... The reason for my dad’s call to his former student was to ask the student, in my father’s own words: “to come and babysit me while my wife is out Saturday evening.” The student happily allowed that he could come and look after my dad. This made my father also happy. I am sure his sitter will see to it that my dad is well looked after and properly tucked into bed at the appropriate time. Maybe he’ll even get a bedtime story. (‘There once was a big, old Australopithicus Afarensis named Bob....’)
As charming and cute as the foregoing seems on the surface, it underscores the illusory quality of my dad’s seemingly good health. It also bolsters the import of yesterday’s post (which you should be sure and read). And finally, it reminds us of the seriousness of the reason for his to be looked after, and that just depresses me. And we’re just at the start of this fun house ride, folks. Hang on tight! It’s gonna get reeeally bumpy!
Friday, December 15, 2006
Acceptance & A Favor (republished)
[A technical problem by the company that hosts this blog for me, a subsidiary of Google, caused the loss of a portion of this post as I wrote it. I thought I had reconstructed the missing portions when it was first published but, upon review, I realize one paragraph remained unrewritten.) I have emended the post with a similar text, albeit probably not as eloquently written due to time constraints. It’s below, in italics.]
I was emotionally ravaged by my dad’s diagnosis. A few nights after meeting with Dr. Cainin, I was driving alone in my car and I spontaneously started crying and screaming. I have now a much better definition of ‘hysterical.’
I had cried before, a number of times, and I cried many times after that, but it was at that moment that I fully accepted the inevitability of my father’s terminality and the magnitude of my concomitant loss. Never in my life have my emotions been stronger or so singularly unmoderated. A profound depression ensued, spanning several weeks, during which I was at best meagerly effective at my work, and detached and unresponsive to my friends and family, with the exception of my dad. Just thinking about him during that period would induce voluminous tears. It seemed as if I would never feel happy again. I bawled at my office several times, mostly privately, but once in the company of a good friend I’ve brought into my current project.
Confronting reality hurt like hell. I did not shy from facing the truth.
But several weeks have now elapsed and with them has come acceptance. That he is going to die soon. That there will be an unfillable void in the remainder of my life. That all I will have are memories and mementos. That experiences I was hoping to share with him will be forever unrealized. I am not happy about these inevitabilities, but I can consider and reflect upon them without collapsing back into a basket case.
It is philosophically interesting to reach this state of mind. There is a bit of guilt as I wonder whether it is okay for me to feel as calmly as I do. Shouldn’t I feel more pressured, more scared, more concerned, just plain more? But there are three principal benefits of feeling like this which encourage me to foresake the guilt: 1. It allows me to once again live my life, meaning I can keep my contract with Wells Fargo and pay my bills, among other niceties; 2. I can focus my energies and attentions on my parents who need them, rather than on indulgently nursing my own hurts; and, finally 3. it affords me the opportunity to love and care for others....
I am coming to know an extraordinary person, whom to my joy, has assumed an importance to me equal to or even exceeding that of my parents.’ That is, in fact, good. That is as it should be. For I have designs to involve her greatly in my life.
The day after Christmas, Tuesday, December 26th, I am taking her for a week to Yosemite. We’re booked into Yosemite Lodge in the valley. We’ll spend our time hiking, Nordic [cross–country] skiing, and simply watching the snow fall and listening to the quiet.
I am taking my favorite person to my favorite place at my favorite time of year. Joy! (One more beautiful image here.)
My absence will leave my parents much less physical support. This naturally worries me. It took much self–consideration and extensive discussions with both my parents (they both admonished me to go) to cause me not to cancel the trip.
My mother is debilitated by her bad back. For a quarter of a century, my father was her arms and back, with my increasing supplementation for heavy items. Now he is incapable and I have shouldered a much larger portion of the burden—which I happily accept. The remaining has been shared amongst temporary help hired by my mom, and a stream of generous family friends and colleagues of my father who have come to the house. (For which my parents and I are truly grateful. Thank you.)
Which leads me to ask a favor of those of you who reside close to my parents, preferrably in Berkeley or Albany: I would like to hear from you if you are going to be in town for one or more days between 12/26/06 and 01/01/07, and could help my parents in a pinch. I want to assemble a ‘call’ list of people that my mother could ring when she needs or knows she will need physical assistance, whether with heavy groceries or helping my father to the car (an extreme example, especially given his recent condition, but not outside the realm of possibilities). I’m hoping that there will be sufficient overlap across the days and hours within each day that my parents won’t be stranded for long. Please e-mail me if you can volunteer. Thank you!
To your preference and those whom you love: Merry Christmas; Happy Channukah; Happy Kwanzaa. Or simply: Peace on Earth, good will towards men. Always.
I was emotionally ravaged by my dad’s diagnosis. A few nights after meeting with Dr. Cainin, I was driving alone in my car and I spontaneously started crying and screaming. I have now a much better definition of ‘hysterical.’
I had cried before, a number of times, and I cried many times after that, but it was at that moment that I fully accepted the inevitability of my father’s terminality and the magnitude of my concomitant loss. Never in my life have my emotions been stronger or so singularly unmoderated. A profound depression ensued, spanning several weeks, during which I was at best meagerly effective at my work, and detached and unresponsive to my friends and family, with the exception of my dad. Just thinking about him during that period would induce voluminous tears. It seemed as if I would never feel happy again. I bawled at my office several times, mostly privately, but once in the company of a good friend I’ve brought into my current project.
Confronting reality hurt like hell. I did not shy from facing the truth.
But several weeks have now elapsed and with them has come acceptance. That he is going to die soon. That there will be an unfillable void in the remainder of my life. That all I will have are memories and mementos. That experiences I was hoping to share with him will be forever unrealized. I am not happy about these inevitabilities, but I can consider and reflect upon them without collapsing back into a basket case.
It is philosophically interesting to reach this state of mind. There is a bit of guilt as I wonder whether it is okay for me to feel as calmly as I do. Shouldn’t I feel more pressured, more scared, more concerned, just plain more? But there are three principal benefits of feeling like this which encourage me to foresake the guilt: 1. It allows me to once again live my life, meaning I can keep my contract with Wells Fargo and pay my bills, among other niceties; 2. I can focus my energies and attentions on my parents who need them, rather than on indulgently nursing my own hurts; and, finally 3. it affords me the opportunity to love and care for others....
I am coming to know an extraordinary person, whom to my joy, has assumed an importance to me equal to or even exceeding that of my parents.’ That is, in fact, good. That is as it should be. For I have designs to involve her greatly in my life.
The day after Christmas, Tuesday, December 26th, I am taking her for a week to Yosemite. We’re booked into Yosemite Lodge in the valley. We’ll spend our time hiking, Nordic [cross–country] skiing, and simply watching the snow fall and listening to the quiet.
I am taking my favorite person to my favorite place at my favorite time of year. Joy! (One more beautiful image here.)
My absence will leave my parents much less physical support. This naturally worries me. It took much self–consideration and extensive discussions with both my parents (they both admonished me to go) to cause me not to cancel the trip.
My mother is debilitated by her bad back. For a quarter of a century, my father was her arms and back, with my increasing supplementation for heavy items. Now he is incapable and I have shouldered a much larger portion of the burden—which I happily accept. The remaining has been shared amongst temporary help hired by my mom, and a stream of generous family friends and colleagues of my father who have come to the house. (For which my parents and I are truly grateful. Thank you.)
Which leads me to ask a favor of those of you who reside close to my parents, preferrably in Berkeley or Albany: I would like to hear from you if you are going to be in town for one or more days between 12/26/06 and 01/01/07, and could help my parents in a pinch. I want to assemble a ‘call’ list of people that my mother could ring when she needs or knows she will need physical assistance, whether with heavy groceries or helping my father to the car (an extreme example, especially given his recent condition, but not outside the realm of possibilities). I’m hoping that there will be sufficient overlap across the days and hours within each day that my parents won’t be stranded for long. Please e-mail me if you can volunteer. Thank you!
To your preference and those whom you love: Merry Christmas; Happy Channukah; Happy Kwanzaa. Or simply: Peace on Earth, good will towards men. Always.
Thursday, December 14, 2006
Big Clot
I chose the name for this post an expression my father uses when he wants to speak deprecatively of someone without the use of profane language. “He’s a big clot.” “She’s just a big clot.” Though actually, the addressee of this peculiar form of vituperation is nearly always male. My best guess to its provenance is that it stems from lessons in anatomy, when my father was either learning it at Chicago (before switching to physical anthropology) or later teaching it at Washington U. I imagine the dissection of an ugly cadaver...
Ugh.
Anyway, I missed something a few days back. I wrote on December 6th that my father was suffering from a large number of small blood clots. Which are since being treated successfully by my mother, Nurse Betty (no, no, no, not that one). But I missed writing about the circumstances that led to his being tested for blood clots in the first place.
My mother noticed my father’s left arm had noticably swollen a few days before the diagnosis. I thought it appeared edemic. My mother tentatively agreed. But what was the etiology? My mother speculated it could be intravenous infiltration, a side–effect of a calcium drip and an IV administered together a few days prior to the diagnosis, the latter to bring up his fluid levels and his electrolytes back into balance. But we knew it also could be a thrombosis. And so did his physicians he saw soon after, which led to the subsequent Doppler ultrasound procedure and the prescription for the clot–busting injection series.
Happily, the injections have been successful. The clot that was backing up blood flow in my dad’s arm is at least significantly diminished, if not eliminated—as are the others—evidenced by his arm returning to its normal diameter.
So today he seems reasonably healthy and happy. But we’ve already seen a lot and we know we’re just at the start of this journey. So rather than finish on an up note, I’ll close instead with the question that hangs over us all...
What next?
Ugh.
Anyway, I missed something a few days back. I wrote on December 6th that my father was suffering from a large number of small blood clots. Which are since being treated successfully by my mother, Nurse Betty (no, no, no, not that one). But I missed writing about the circumstances that led to his being tested for blood clots in the first place.
My mother noticed my father’s left arm had noticably swollen a few days before the diagnosis. I thought it appeared edemic. My mother tentatively agreed. But what was the etiology? My mother speculated it could be intravenous infiltration, a side–effect of a calcium drip and an IV administered together a few days prior to the diagnosis, the latter to bring up his fluid levels and his electrolytes back into balance. But we knew it also could be a thrombosis. And so did his physicians he saw soon after, which led to the subsequent Doppler ultrasound procedure and the prescription for the clot–busting injection series.
Happily, the injections have been successful. The clot that was backing up blood flow in my dad’s arm is at least significantly diminished, if not eliminated—as are the others—evidenced by his arm returning to its normal diameter.
So today he seems reasonably healthy and happy. But we’ve already seen a lot and we know we’re just at the start of this journey. So rather than finish on an up note, I’ll close instead with the question that hangs over us all...
What next?
Wednesday, December 13, 2006
Against the Odds...?
[This post was slightly amended for clarity after its original posting at 9:47PM, Pacific Time. It was subsequently republished at 11:46PM PT.]
Yesterday was my dad’s second round of chemotherapy and today he was up and around, albeit supported by a cane and moving rather slowly, making jokes and eating well. And he has little pain; he hasn’t taken pain pills in several days. He is still sleeping upstairs in my parents’s bedroom. In fact, he’s been like that for awhile. Lately he even trundles himself up the stairs with nary a hitch. This is a vast improvement from a couple of weeks ago. But today it is especially surprising in the wake of the chemo, which typically knocks flat its recipients the day after administration. My visiting Aunt Gloria is amazed by my dad’s stamina and spirits. And she should know, having herself recently underwent a course of chemotherapy (and a pulmonary resection) during her own current battle with smoking–induced small cell lung cancer. It’s nearly like old times.
Except it’s not.
He tires easily. He needs the cane. The walker waits for him at the top of the stairs. So do the as of yet unused oxygen cylinders and mask. And none of my family is living in denial. We each know.
We know that on average chemotherapeutic efforts extend life just two to three months. If you understand statistics, you appreciate that that means there are few who experience significant life prolonging. We are aware of the palliative effects of chemotherapy—the primary reason that such drugs are administered to stage 4 lung cancer victims like my relatives. I cannot but help believe that the improvements I see in my father are thus born of his therapy—and consequently they will be extremely transient.
I know I keep harping on mortality figures but I don’t want to encourage false hope or inappropriate optimism. My dad is going to die and quite probably in the next few months. Of course I would love for him to be an outlier but it is better to plan for and live as if there is no chance of that happening, and celebrate and embrace every miraculous day.
Tuesday, December 12, 2006
Contacting my Father (Please Read)
My dad is not getting e-mail nor receiving phone messages from his office at Cal. If you wish to contact my father, for any reason, please send e-mail to my mother at [removed]. She can also tell you when it would be best to talk to my father on the phone or visit him. If for any reason you cannot send e-mail, please feel free to call me at [removed]. I can always be reached by e-mail at [removed].
Thanks,
Brian
Thanks,
Brian
Aftermath
Today was my dad’s second round of chemotherapy, at Kaiser in Walnut Creek. My parents left their home at 8:30AM and arrived back there at 5:30PM, nine hours later. The day started with a series of blood tests to check his white blood cell levels—they’re elevated—hemoglobin and creatine (reflects liver function). The infusion followed and took four hours. The remaining hours were mostly spent driving through rush hour traffic, both ways. (They did stop briefly by the Cheese Board Collective in Berkeley to pick up an always yummy pre-made pizza for dinner.) We don’t yet know whether the chemotherapy is having a salutary effect.
Today’s administration was relatively benign. Like last time, a low dose of Benadryl (yes, the allergy medicine) was administered along with the chemo to make my dad sleep lightly through the process and take off the edge. He feels fine now but tomorrow will be the real test. It’s usually the day after when the physical impacts really hit. At least he’s quite hungry and eating a relatively large meal as he sits in a chair next to me. He has actually been eating better the past few days.
My aunt Gloria went along as predicted. This was nice for my mom because she had someone to keep her company while my dad was undergoing treatment. While the Taxol and other drugs dripped into my sleeping father’s veins, my mom and Gloria walked over and went shopping at the nearby Broadway Plaza and shared a “delicious” lunch at Va de Vie Bistro
Life goes on. Even with the Sword of Damocles dangling over our heads.
Today’s administration was relatively benign. Like last time, a low dose of Benadryl (yes, the allergy medicine) was administered along with the chemo to make my dad sleep lightly through the process and take off the edge. He feels fine now but tomorrow will be the real test. It’s usually the day after when the physical impacts really hit. At least he’s quite hungry and eating a relatively large meal as he sits in a chair next to me. He has actually been eating better the past few days.
My aunt Gloria went along as predicted. This was nice for my mom because she had someone to keep her company while my dad was undergoing treatment. While the Taxol and other drugs dripped into my sleeping father’s veins, my mom and Gloria walked over and went shopping at the nearby Broadway Plaza and shared a “delicious” lunch at Va de Vie Bistro
Life goes on. Even with the Sword of Damocles dangling over our heads.
Monday, December 11, 2006
Ding! Round Two: Addendum
In my last post I wrote “At least this time, with her sister here, my mom won’t have to spend hours waiting with only my stuperous father to talk to.” This was by no means to imply that my father was deserving of anything less than my mother’s full attention. However, his first chemo infusion took five hours, during which time my father dozed off for a while, leaving my mom effectively alone for the duration. By contrast, I believe that her sister Gloria’s expected presence tomorrow will simply serve to help diminish my mother’s tedium.
Ding! Round Two
Tomorrow it will be three weeks since my dad’s first chemotherapeutic infusion and that means it will be time for another. Which, to put it very bluntly, means he’ll feel like “shit” [and I quote him] for several days following.
We’ll also learn if the chemo is having any retardant benefit—it will by no means cure him. If not, the only decision will be whether to continue it strictly for its palliative value. At least this time, with her sister here, my mom won’t have to spend hours waiting with only my stuperous father to talk to.
We’ll also learn if the chemo is having any retardant benefit—it will by no means cure him. If not, the only decision will be whether to continue it strictly for its palliative value. At least this time, with her sister here, my mom won’t have to spend hours waiting with only my stuperous father to talk to.
Gloria in Excelsis
My mother is the second of four sisters. No matter how hard he tried, my maternal grandfather, Arthur Otto Tomsen (A.K.A. ‘A.O.T.’, which he claimed stood for ‘Always on Top’*) could not produce an heir to his family name.
Over the years, two of the sisters have traveled to opposite ends of the continent, following their husbands’ academic careers. (My parents met when my Uncle Art, then a postdoc at Washington University, introduced his friend and fellow postdoc, my dad, to his girlfriend’s cute younger sister.) The remaining two sisters stayed close to their hometown of St. Louis. Today my mother’s older sister, Gloria, comes from New Jersey to visit for ten days. It will be the first in several years as she has been taking care of her ischemic stroke–debilitated husband, Arthur, and, over most of the last year, battling stage 4 lung cancer herself, including suffering several rounds of chemotherapy and a pulmonary lobectomy. As much as I love her, I don’t expect her visit to be the most uplifting experience. But at least my dad will have someone with whom to commiserate in a way that only cancer victims can.
Neither of these two fine people have long to live.
*Yes, knowing this tidbit does inform understanding my mother
Over the years, two of the sisters have traveled to opposite ends of the continent, following their husbands’ academic careers. (My parents met when my Uncle Art, then a postdoc at Washington University, introduced his friend and fellow postdoc, my dad, to his girlfriend’s cute younger sister.) The remaining two sisters stayed close to their hometown of St. Louis. Today my mother’s older sister, Gloria, comes from New Jersey to visit for ten days. It will be the first in several years as she has been taking care of her ischemic stroke–debilitated husband, Arthur, and, over most of the last year, battling stage 4 lung cancer herself, including suffering several rounds of chemotherapy and a pulmonary lobectomy. As much as I love her, I don’t expect her visit to be the most uplifting experience. But at least my dad will have someone with whom to commiserate in a way that only cancer victims can.
Neither of these two fine people have long to live.
*Yes, knowing this tidbit does inform understanding my mother
Saturday, December 9, 2006
Waiting Game
The test have been performed. The diagnoses have been made. The drugs are being administered—including a 21–day series of injections for blood clots being given by ‘Nurse Betty’ (my mom was an RN). The trends are known and inevitable. The audio histories are underway (begun in earnest yesterday).
Hereafter I will post somewhat less, probably at most once a day. I promise I won’t miss any milestones, good or bad (and they will be mostly bad). The change is principally because there is just going to be less to post.
Hereafter I will post somewhat less, probably at most once a day. I promise I won’t miss any milestones, good or bad (and they will be mostly bad). The change is principally because there is just going to be less to post.
Thursday, December 7, 2006
SME
[This post has been slightly edited since first written to correct broken grammar. The edit is flagged within the text. The original text is cited immediately below.]
Being that the person is not a medical doctor, in fact I wish I didn’t for her knowledge comes from suffering through much of what I am now experiencing. But I am truly grateful for her timely and informative e-missives nonetheless.No, I’m not talking about the slightly officious toady assistant to Cap’t Hook in J.M. Barrie’s classic Peter Pan. That was ‘Smee.’ SME is an acronym for ‘Subject Matter Expert.’ SMEs are people who offer expertise in a specific area to third parties, such as Congress, courts, and even Internet E-commerce architects like me. To me, SMEs provide essential information during planning such as business requirements, corporate accounting rules, legal policies and company regulations, and prospective end–user feedback on user interface models.
Twice in the course of writing this blog I have stumbled over arcane medical issues. This is in part because I am slightly removed from the diagnostic process insofar as I have only once been with my father during a diagnosis and thereby be able to inform myself by asking questions.
The first stumble was the calcium drip. As usual, I went to the oracle. Although it returned voluminous amounts of information, nearly all of what I found in the first several hundred returned search matches were of a far too rarified nature to comprehend without investing a fair number of hours. (Not that I am lazy but I do have other important demands on my time.) Yesterday I couldnt immediately fathom the ramnifications of the many little blood clots.
In both cases I received an e-mail from one of my father’s favorite colleagues, a few hours after posting. Each contained a lucid, concise explanation such as the one I cited to elucidate the calcium drip. I now have a cancer SME. [begin edit] The person is not a medical doctor. Her knowledge comes from suffering through much of what I am now experiencing. I am truly grateful for her timely and informative e-missives.[end edit]
Following is my cancer SME’s explanation for the clots, which I provide in full:
The clotting that your father is experiencing is probably of the type called “disseminated intravascular coagulation [DIC],” which is relatively common in people with advanced and/or aggressive cancer. This is a serious condition.Given that the new drug being administered is Warfarin and I am now aware of a couple of other facts, I believe the foregoing to be exactly correct.
There is a large medical literature on this topic, but the vocabulary invoked in the technical descriptions of the condition can be overwhelming. The following sources are intelligible and may help:
If you feel like delving into the clinical literature, abstracts of relevant technical papers are available through the National Library of Medicine, e.g.:
The next time you have access to one of your father’s physicians, it would be worthwhile to ask if your father is suffering from DIC. Treatment with various anticoagulants (heparin, warfarin) and other agents that target the clotting cascade is usually followed.
This same person has written several thoughtful, kind, empathetic and helpful e-mails in regards to other posts, including yesterday’s on fear. Lest she expressely allows me otherwise, I shall keep her identity anonymous. Regardless, I truly and deeply thank her.
Wednesday, December 6, 2006
Lots of Clots
My dad has blood clots. Lots of little ones. They were revealed by a Doppler ultrasound examination he had today at Kaiser in Walnut Creek.
Unfortunately, I don’t yet really understand the details: Why he has them; and the significance of them—other than their being etologically related to thrombotic strokes. I only saw my parents for a few minutes this evening and couldn’t get all of the details. (I will seek more on Thursday.) I do know that my dad has a new medication he is taking for the clots. (This is in addition to the seeming dozens he already daily ingests.) And apparently his chemotheraputic cocktail again will be remixed in recognition of both the clots and the drugs.
And so it goes....
P.S. I don’t understand the long gap between the text and table that appears when my previous post is viewed in some browsers. I tried fixing it for about fifteen minutes and then let it go. I’m sorry if you were inconvenienced or annoyed by it.
Unfortunately, I don’t yet really understand the details: Why he has them; and the significance of them—other than their being etologically related to thrombotic strokes. I only saw my parents for a few minutes this evening and couldn’t get all of the details. (I will seek more on Thursday.) I do know that my dad has a new medication he is taking for the clots. (This is in addition to the seeming dozens he already daily ingests.) And apparently his chemotheraputic cocktail again will be remixed in recognition of both the clots and the drugs.
And so it goes....
P.S. I don’t understand the long gap between the text and table that appears when my previous post is viewed in some browsers. I tried fixing it for about fifteen minutes and then let it go. I’m sorry if you were inconvenienced or annoyed by it.
Fear
We’re scared. Each of us. My father, my mother, my sister and me. And we each manifest it in different ways. Me? I fly into virtual rants. My mother gets edgy and reactive. My father’s reaction is to avoid facing the truth (see previous link) and become argumentative.
We have good reason to be scared. The statistics are unassailable: (NCI data)
*From diagnosis
Biases for longevity are youth, health, and the type of lung cancer. My dad is 81, was overweight and has a more aggressive type.
Actually, until a few days ago, I didn’t know for sure that either of my parents are scared. I surmised—correctly—from notable behavioral changes. But my mom told me she was scared during dinner last Friday. She also told me that my dad has told her that he was scared the night before. She added that she had never before heard him ever claiming to be scared. Then I saw it for myself the next morning. For the first time in my life, when I went to greet him, my father’s expression was clearly fearful. He looked helpless. I shall never forget the experience.
We have good reason to be scared. The statistics are unassailable: (NCI data)
| Months* | %Alive |
| 8 | 50 |
| 12 | 35 |
| 24 | 5 |
| 60 | 2 |
Biases for longevity are youth, health, and the type of lung cancer. My dad is 81, was overweight and has a more aggressive type.
Actually, until a few days ago, I didn’t know for sure that either of my parents are scared. I surmised—correctly—from notable behavioral changes. But my mom told me she was scared during dinner last Friday. She also told me that my dad has told her that he was scared the night before. She added that she had never before heard him ever claiming to be scared. Then I saw it for myself the next morning. For the first time in my life, when I went to greet him, my father’s expression was clearly fearful. He looked helpless. I shall never forget the experience.
Tuesday, December 5, 2006
Briefly...
More later for I am pressed by other matters:
On the whole, I am somewhat appeased and my spirits are a little buoyed. It is clear he is getting care superior to Kaiser in Walnut Creek, albeit the physician (whose name I do not know) said that of the three local East Bay facilities, Walnut Creek is far superior to Kaiser in either Richmond or Oakland and that he is generally impressed with them. And UCSF is a National Comprehensive Cancer Center, just like Anderson, and certainly offers far better and more informed care than Kaiser.
For all this, we still have no idea how long he is going to live. But according to one source, given his stage and symptoms, his chances of suriving two years are 1:20. And his age and overall health factors are strongly against his living even that long.
- My parents just came back from a long appointment at UCSF.
- They really liked the physician. He was very straightforward and had facts and figures at his fingertips, much more than Dr. Cainin.
- The appointment was paid for by a family friend, for which I am grateful.
- The physician...
- Added a third drug to my dad’s chemotherapy cocktail.
- Asked that my father get a Doppler (type of ultrasound) to check for a bloodclot (thrombosis).
- Estimated that the cancer probably started last spring, in April or May. (This is in line with my estimates and far contrary to 1995 as suggested by my dad.)
- Said that my dad had a 50% chance of responding to chemotherapy.
- Did not give any estimates as to remaining lifetime. (Neither did Dr. Cainin.)
- Added a third drug to my dad’s chemotherapy cocktail.
- I guess my dad won’t be going to Anderson.
On the whole, I am somewhat appeased and my spirits are a little buoyed. It is clear he is getting care superior to Kaiser in Walnut Creek, albeit the physician (whose name I do not know) said that of the three local East Bay facilities, Walnut Creek is far superior to Kaiser in either Richmond or Oakland and that he is generally impressed with them. And UCSF is a National Comprehensive Cancer Center, just like Anderson, and certainly offers far better and more informed care than Kaiser.
For all this, we still have no idea how long he is going to live. But according to one source, given his stage and symptoms, his chances of suriving two years are 1:20. And his age and overall health factors are strongly against his living even that long.
I’m Sorry, Did I Miss Something?
As my British–born girlfriend might say: I ’ad a bit o’ a row with me dad, las’ night, I did. Actually, she ain’t no Eliza Doolittle; I can’t imagine her speaking like that other than theatrically, let alone in Cockney. Especially considering her parents are American and her accent after years in the U.S. is rather slight—other than saying “naught” as in “Brian, I am naught amused.” Yes, she really does say that!
Anyway, so my father and I engaged in several intense rounds of verbal fisticuffs, with my mother our audience. The issue? His life.
As I wrote before, I’ve read the NCI (NIH) statistics: 50% of lung cancer victims are dead within eight months of diagnosis and 98% within five years. Contributing factors to longevity being robust health and youth, neither of which my father possesses. I was in the room with my parents when my father’s oncologist, Dr. Cainin said that it was small cell lung cancer (SCLC; very fast spreading and particular to smokers), that it had metasticized (extremely bad), and that on average, chemotherapy extends the lives of similar victims by just 2–3 months. We already knew it was stage 4. In sum, a death sentence, the only variable being when but, clearly, the odds are very dim that he’ll be around to see the completion of the new east span of the San Francisco–Oakland Bay Bridge. Even if we had heard only the chemotherapy statistic, it would have been immediately, abundantly clear: My father’s cancer is extremely aggressive and virulent.
Yesterday I talked about the M.D. Anderson Cancer Center at the University of Texas at Austin. It is one of the two top cancer research centers in the country (the other being Memorial Sloan–Kettering in New York). In addition they are one of the original three of twenty National Comprehensive Cancer Centers (both UCSF and Stanford are also members). NCCC members collaborate and share research.
But Sloan and Anderson are the best. (My mother’s sister, my aunt Gloria, went to Sloan earlier this year for treatment for her stage 4 SCLC earlier this year.) Anderson has the best diagnostic tools. Anderson sees more than 60,000 cancer patients last year. They have access to medications and treatments often years before other facilities, including UCSF. And I know they coordinate treatment with other facilities: a friend of mine’s uncle was being treated at UCSF. He took a trip to Anderson where they re-diagnosed him and changed his chemotheraputic cocktail. He then returned to the Bay Area and continued to receive his chemo treatments at UCSF. Oh, and his lung cancer went into remission. (Not that I am trying to fool myself.)
The foregoing begs the question: If you wanted the best diagnosis and treatment plan for your life–threatening disease, if only to ensure your comfort, where would you go? If it were me, I’d have been on a plane to Anderson as soon as I knew about it. Which, we did, shortly after my father’s original diagnosis. Independently, my father and I both researched Anderson—or so he claimed. And yet his first stop was Kaiser in Walnut Creek, CA for a biopsy and subsequently refined diagnosis. Okay, notwithstanding the apparent incredible swiftness of the onset of his cancer, this seems like a reasonable step. But once the diagnosis was at hand, why wait? Call United Airlines and cash in some of that mountain of frequent flyer miles (from all that world traveling) for two first class tickets to Austin Texas! It was/is certainly worth the expense since he may not be around to use them otherwise.
But instead they scheduled an appointment at UCSF’s oncology department. Which, admittedly, is very good. But it’s just not Anderson. Hence my argument with my father last night: I want him to go to Anderson. Now. Today. I see no reason to wait. The cancer grows within him every day he delays. And he grows weaker, and less able to withstand the rigors of flying. Inexplicably, to me at least, he finds cause to not go right now. Indeed, possibly not at all. His primary excuse was that he doesn’t want to offend Dr. Cainin “who has been very nice” and graciously took him on as a patient. To which I retorted that yes, Dr. Cainin has been very nice, very generous and it is clear he is very competent. But such personal feelings are completely irrelevant relative to my dad’s rapidly waning life and comfort.
He supplemented the prior ‘issue’ by adding that he would require a physician’s referral to get to Anderson (meaning Dr. Cainin). Not so, I countered, pointing out that a prospective patient can refer himself simply by filling out a form on the Anderson Web site. So much for my dad’s claim of having thoroughly researched Anderson.
Another argument is that there is today’s appointment at UCSF. Well, okay. But it is a preliminary appointment. They will almost certainly want to run tests on their own, which will take time. And they are still not as good as Anderson.
Finally, my father seemed to demonstrate complete ignorance as to the virulence of his cancer, suggesting that he thought it had been growing in him since 1995. He gave a series of completely laughable supporting statements. My mother looked at me and rolled her eyes. Now I know math and I’ve recently studied mathematical models of cancer growth. SCLC grows and spreads among the very fastest. It would need just a few months to reach the severity at which it was first detected. When I pointed out these facts a few minutes later, after my father let me get a word in, he then retorted that he had never said the cancer started growing in 1995, that to think such a thing was ridiculous! At which point my mother assured him that yes, he had made that claim minutes before. Clearly, my father is being irrational about his fate and the care he deserves.
My dad has said that he will consider discussing the idea of going to Anderson with Dr. Cainin and, perhaps, the UCSF physicians. And that he might consider going next week, following his next chemotherapy session, before which they will also review whether the first had any effect. Meanwhile the cancer cells continue to divide every 18–19 hours, growing and spreading within him.
Anyway, so my father and I engaged in several intense rounds of verbal fisticuffs, with my mother our audience. The issue? His life.
As I wrote before, I’ve read the NCI (NIH) statistics: 50% of lung cancer victims are dead within eight months of diagnosis and 98% within five years. Contributing factors to longevity being robust health and youth, neither of which my father possesses. I was in the room with my parents when my father’s oncologist, Dr. Cainin said that it was small cell lung cancer (SCLC; very fast spreading and particular to smokers), that it had metasticized (extremely bad), and that on average, chemotherapy extends the lives of similar victims by just 2–3 months. We already knew it was stage 4. In sum, a death sentence, the only variable being when but, clearly, the odds are very dim that he’ll be around to see the completion of the new east span of the San Francisco–Oakland Bay Bridge. Even if we had heard only the chemotherapy statistic, it would have been immediately, abundantly clear: My father’s cancer is extremely aggressive and virulent.
Yesterday I talked about the M.D. Anderson Cancer Center at the University of Texas at Austin. It is one of the two top cancer research centers in the country (the other being Memorial Sloan–Kettering in New York). In addition they are one of the original three of twenty National Comprehensive Cancer Centers (both UCSF and Stanford are also members). NCCC members collaborate and share research.
But Sloan and Anderson are the best. (My mother’s sister, my aunt Gloria, went to Sloan earlier this year for treatment for her stage 4 SCLC earlier this year.) Anderson has the best diagnostic tools. Anderson sees more than 60,000 cancer patients last year. They have access to medications and treatments often years before other facilities, including UCSF. And I know they coordinate treatment with other facilities: a friend of mine’s uncle was being treated at UCSF. He took a trip to Anderson where they re-diagnosed him and changed his chemotheraputic cocktail. He then returned to the Bay Area and continued to receive his chemo treatments at UCSF. Oh, and his lung cancer went into remission. (Not that I am trying to fool myself.)
The foregoing begs the question: If you wanted the best diagnosis and treatment plan for your life–threatening disease, if only to ensure your comfort, where would you go? If it were me, I’d have been on a plane to Anderson as soon as I knew about it. Which, we did, shortly after my father’s original diagnosis. Independently, my father and I both researched Anderson—or so he claimed. And yet his first stop was Kaiser in Walnut Creek, CA for a biopsy and subsequently refined diagnosis. Okay, notwithstanding the apparent incredible swiftness of the onset of his cancer, this seems like a reasonable step. But once the diagnosis was at hand, why wait? Call United Airlines and cash in some of that mountain of frequent flyer miles (from all that world traveling) for two first class tickets to Austin Texas! It was/is certainly worth the expense since he may not be around to use them otherwise.
But instead they scheduled an appointment at UCSF’s oncology department. Which, admittedly, is very good. But it’s just not Anderson. Hence my argument with my father last night: I want him to go to Anderson. Now. Today. I see no reason to wait. The cancer grows within him every day he delays. And he grows weaker, and less able to withstand the rigors of flying. Inexplicably, to me at least, he finds cause to not go right now. Indeed, possibly not at all. His primary excuse was that he doesn’t want to offend Dr. Cainin “who has been very nice” and graciously took him on as a patient. To which I retorted that yes, Dr. Cainin has been very nice, very generous and it is clear he is very competent. But such personal feelings are completely irrelevant relative to my dad’s rapidly waning life and comfort.
He supplemented the prior ‘issue’ by adding that he would require a physician’s referral to get to Anderson (meaning Dr. Cainin). Not so, I countered, pointing out that a prospective patient can refer himself simply by filling out a form on the Anderson Web site. So much for my dad’s claim of having thoroughly researched Anderson.
Another argument is that there is today’s appointment at UCSF. Well, okay. But it is a preliminary appointment. They will almost certainly want to run tests on their own, which will take time. And they are still not as good as Anderson.
Finally, my father seemed to demonstrate complete ignorance as to the virulence of his cancer, suggesting that he thought it had been growing in him since 1995. He gave a series of completely laughable supporting statements. My mother looked at me and rolled her eyes. Now I know math and I’ve recently studied mathematical models of cancer growth. SCLC grows and spreads among the very fastest. It would need just a few months to reach the severity at which it was first detected. When I pointed out these facts a few minutes later, after my father let me get a word in, he then retorted that he had never said the cancer started growing in 1995, that to think such a thing was ridiculous! At which point my mother assured him that yes, he had made that claim minutes before. Clearly, my father is being irrational about his fate and the care he deserves.
My dad has said that he will consider discussing the idea of going to Anderson with Dr. Cainin and, perhaps, the UCSF physicians. And that he might consider going next week, following his next chemotherapy session, before which they will also review whether the first had any effect. Meanwhile the cancer cells continue to divide every 18–19 hours, growing and spreading within him.
Monday, December 4, 2006
It Bears Repeating...
I’ve said it before but it bears repeating: My profound and continuing thanks to all of you who have taken the time to e-mail, call or visit my parents. The many gifts, prepared meals and chauffeuring also are greatly appreciated.
I can be reached at [removed] or [removed] (cell). If you call me, please remember that I live in the Pacific Time Zone, which is 8–9 hours later than Europe and three hours later than the East Coast of the United States. I underscore this because I leave my phone on 24 hours per day, both for business purposes (computers never sleep) and now, especially, to ensure that my parents can reach me anytime.
My mother’s e-mail address is [removed]. If you want to reach my parents directly, I ask that you please initially e-mail my mother as her phone has been ringing constantly lately and my dad’s deteriorating condition is increasingly monopolizing her time. She can then either e-mail or phone you back at her convenience. Please be patient. Thank you.
I can be reached at [removed] or [removed] (cell). If you call me, please remember that I live in the Pacific Time Zone, which is 8–9 hours later than Europe and three hours later than the East Coast of the United States. I underscore this because I leave my phone on 24 hours per day, both for business purposes (computers never sleep) and now, especially, to ensure that my parents can reach me anytime.
My mother’s e-mail address is [removed]. If you want to reach my parents directly, I ask that you please initially e-mail my mother as her phone has been ringing constantly lately and my dad’s deteriorating condition is increasingly monopolizing her time. She can then either e-mail or phone you back at her convenience. Please be patient. Thank you.
UCSF and UTA(?)
Tomorrow my parents will be going to the University of California at San Francisco medical center to get a second opinion. UCSF has one of the best oncology centers in the U.S. and is certainly better than Kaiser–which does seem to be quite good. Even so, we are not optimistic.
Upon the recommendation of several friends, I am also investigating getting him to the M.D. Anderson Cancer Center at the University of Texas at Austin. They’re one of the two best oncology centers in the entire country. I’m told they’re almost miracle workers. One person I talked to told me of a relative who was being treated at UCSF and later went to Anderson. The folks at Anderson prescribed a different chemo cocktail and a few months later the relative was on the mend. Of course each patient is different. And I thoroughly appreciate the severity of my father’s cancer. But why not try, if possible. Alas, my mother doesn’t think my dad would be strong enough to make the trip. He is weaker every day. (“For want of a horse, a kingdom was lost.”)
Upon the recommendation of several friends, I am also investigating getting him to the M.D. Anderson Cancer Center at the University of Texas at Austin. They’re one of the two best oncology centers in the entire country. I’m told they’re almost miracle workers. One person I talked to told me of a relative who was being treated at UCSF and later went to Anderson. The folks at Anderson prescribed a different chemo cocktail and a few months later the relative was on the mend. Of course each patient is different. And I thoroughly appreciate the severity of my father’s cancer. But why not try, if possible. Alas, my mother doesn’t think my dad would be strong enough to make the trip. He is weaker every day. (“For want of a horse, a kingdom was lost.”)
Excerpt
From a discussion between mother and son, over dinner last Friday:
Brian: “[Candidly] Mom, he may not last more than a few months.”
Betty: “Brian, he may not last more than a few weeks!”
Eyes wide open.
Come visit him now. Please. There is no reason to hold back.
Brian: “[Candidly] Mom, he may not last more than a few months.”
Betty: “Brian, he may not last more than a few weeks!”
Eyes wide open.
Come visit him now. Please. There is no reason to hold back.
Friday, December 1, 2006
Moving
Tomorrow, Saturday December 2nd, my life will be thrown into further disarray as I relocate. I will post if I can. That is at the very least contingent on whether AT&T has correctly installed and configured my new DSL Internet service. I will be able to post on Sunday regardless as I will be at my parents’s home and they have wireless Internet throughout their house. (Yes, thanks to their nerdy son, moi.)
Skepticism Justified
Today’s PET scan took three hours, an hour longer than we were told it would require. My skepticism as to doctors’ timely estimates has been justified. I am, in fact, surprised that it didn’t take longer, given foregoing experience.
In thirty minutes I will meet my mother at BART’s Embarcadero station in San Francisco. From there we will go out to dinner and then we’ll attend tonight’s performance of the San Francisco Symphony. (I’ve been a season subscriber for many years.) A former graduate student of my father will keep my dad company this evening. I know he will love the opportunity to talk shop uninterrupted by such trivialities as my mother chronically trying to get him to eat.
Tonight’s activities don’t amount to much in the greater scheme of things but, hopefully and if only for a little while, my mom will be able to relax and set aside the worries and pressures that I know now plague her relentlessly–even if she does not reflect them.
In thirty minutes I will meet my mother at BART’s Embarcadero station in San Francisco. From there we will go out to dinner and then we’ll attend tonight’s performance of the San Francisco Symphony. (I’ve been a season subscriber for many years.) A former graduate student of my father will keep my dad company this evening. I know he will love the opportunity to talk shop uninterrupted by such trivialities as my mother chronically trying to get him to eat.
Tonight’s activities don’t amount to much in the greater scheme of things but, hopefully and if only for a little while, my mom will be able to relax and set aside the worries and pressures that I know now plague her relentlessly–even if she does not reflect them.
Saint Betty
I appreciate the traditional commitment made during marriage vows: “for better or for worse.” I am bearing witness to the strength of that commitment now. After 51 years of marriage, ‘worse’ has arrived for my mother. Yesterday’s calcium drip took three hours, not the two predicted. And my father’s first round of chemotherapy a week and a half back took not the anticipated four but seven hours; two to calibrate dosages and five for administration. This was in addition to another hour spent waiting for and then seeing his oncologist. (For a total of eight hours.) And then my mom had to drive them home from Walnut Creek to Berkeley in nighttime heavy commute traffic. (She is now my father’s full–time chauffeur. He will never again sit behind the wheel of his car.) Today my dad will have a PET scan to examine his bone density. We were told it would take two hours. Understandably, I am skeptical.
Through all this and much more, including endless lifestyle adjustments, numerous other medical appointments (such as the 4.5 hour bronchoscopy), endless e-mails and phone calls, and just the day–to–day ministering to my father, my mother soldiers on with nary a complaint. And the demands upon her grow daily. Her life has been completely transmogrified by my father’s illness. She really no longer shares her life with him so much as gives her life to him. (Of course I do what I can.)
I hereby nominate my mother for sainthood.
Through all this and much more, including endless lifestyle adjustments, numerous other medical appointments (such as the 4.5 hour bronchoscopy), endless e-mails and phone calls, and just the day–to–day ministering to my father, my mother soldiers on with nary a complaint. And the demands upon her grow daily. Her life has been completely transmogrified by my father’s illness. She really no longer shares her life with him so much as gives her life to him. (Of course I do what I can.)
I hereby nominate my mother for sainthood.
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