Please e-mail or call me at [removed] or [removed].
Please do not contact my mom. I am coordinating all visits, phone calls and messages. My mom has enough to deal with as it is.
Many thanks,
Brian
Thursday, March 8, 2007
Love
He asked for me early this morning and one of the two Fijian women called me on my cell phone. I was up at my folks’ house in minutes. He asks for me a lot these days. Through broken statements I’ve come to appreciate that he wants a family member with him all the time. He doesn’t want to die alone. But, at the same time, he is trying to shield my mother from the worst and most ugly aspects of his illness. Love is expressed in many different ways.
Share
I know there are quite a number of people reading this blog. I invite and encourage you to share some of your favorite memories of my dad. They could be work or personal. Please drop me an e-mail at [removed] and I will post them as I receive them. Also, please spread the word on my father. People need to know. It was just yesterday that I was finally able to get in touch with one of my dad’s best friends, longtime colleague and former graduate student.
Wednesday, March 7, 2007
A Hell of a Day
My dad is sleeping and snoring now. Doped on a strong dose of morphine. My mother is in bed, in my sister’s room. I am sitting by my dad’s hospital bed. I am exhausted.
Today was, without question, one of the longest and toughest of my life—and, I am sure, my mother’s as well. But it was far from the worst for either of us. That one is impending.
It was a day where I began discussing arrangments for managing the inevitable academic media circus that will occur in the wake of my father’s death. I was relieved to find out that the University of California has a protocol for fielding such professional inquiries. All I will have to do is refer any such calls that come to my parents’ home.
It was a day where I broached the subject of a memorial service. Here, too, I was told that third parties will intervene. Cal, in collaboration with the L.S.B. Leakey Foundation, will organize a memorial.
It was a day where I had a close friend of my father sob in my arms, saw several more of his friends on the verge of tears, and heard from my mom of yet another friend crying—a gentleman whom I have always felt to be very strong. I am very glad that my father is so loved by so many.
Today was, without question, one of the longest and toughest of my life—and, I am sure, my mother’s as well. But it was far from the worst for either of us. That one is impending.
It was a day where I began discussing arrangments for managing the inevitable academic media circus that will occur in the wake of my father’s death. I was relieved to find out that the University of California has a protocol for fielding such professional inquiries. All I will have to do is refer any such calls that come to my parents’ home.
It was a day where I broached the subject of a memorial service. Here, too, I was told that third parties will intervene. Cal, in collaboration with the L.S.B. Leakey Foundation, will organize a memorial.
It was a day where I had a close friend of my father sob in my arms, saw several more of his friends on the verge of tears, and heard from my mom of yet another friend crying—a gentleman whom I have always felt to be very strong. I am very glad that my father is so loved by so many.
Vigil
All chemotherapuetic treatments have been stopped, as have been many other medications. Weeping sores have opened on his forearms; I am not sure of the genetive factors. The constant purr of the oxygen concentrator can be heard throughout much of the house. He is on morphine.
He spends his day in his hospital bed, exhausted, frequently dozing. He cannot get up, or even turn over by himself. Thankfullly, he has assistance. He is almost bald, a side effect of the chemotherapy, and vastly shrunken from his former girth, having eaten so little for so long. His atrophied legs, as he described them recently to a friend, resemble those of a concentration camp inmate. The change over the past few days, as described this morning by a visiting former student, has been “exponentially” for the worse.
His breathing is labored. A side effect, I believe, of the mass in his superior vena cava. After learning about it, it struck me that the mass is not only forcing fluid (plasma) from within the vessel through the vascular walls, to pool in his forearms. The mass is also greatly impeding overall circulation and, especially, pulmonary function: less blood through the lungs means less oxygen (O2) and carbon dioxide (CO2) exchange. Hence his chronic shortness of breath and need for the concentrator.
It is four months to the day that I first learned of his illness. I am suffering from a kind of cognitive dissonance: It seems both much longer and much shorter than that.
It is, simply, the end. My mother, a former Registered Nurse with experience in an oncology ward, does not expect him to survive through to Monday. None of us, I, my mother and sister and other relatives, nor his many friends are ready for this. But it is out of our control. We feel so helpless and fragile ourselves.
He will not finish his audio history. There was never the opportunity for me to record any of the remarkable stories of his youth that I remember him telling me at bedtime in my own childhood. I blame myself: Too much focus on work and not enough attention on what really mattered. I presumed I would have longer. I have cried for the lost opportunities. It is a lesson most painfully learned.
My mother and I, and his attendants and visiting friends, are all doing what we can to keep him comfortable. I gently rub his head and arms, which he likes, lubricate the interior of his desiccated mouth using a small moistened sponge on a long stick, fluff up his pillows and adjust his covers. The tasks are small but the disease is large and renders moot any attempts at greater efforts.*
I sit across from his bed, watching him. He is sleeping, snorning softly. Ocassionally over the past few days he will seem to stop breathing for a moment and his body will slump. Each time I tense: Is it his last? Up until now, that has always been followed by a wriggle or a shift, as he unconsciously tries to get comfortable in his bed. But it won’t be long. Tears are pooling behind a dam of temporary self–control.
It is a vigil.
*Such as surgery or radiation.
He spends his day in his hospital bed, exhausted, frequently dozing. He cannot get up, or even turn over by himself. Thankfullly, he has assistance. He is almost bald, a side effect of the chemotherapy, and vastly shrunken from his former girth, having eaten so little for so long. His atrophied legs, as he described them recently to a friend, resemble those of a concentration camp inmate. The change over the past few days, as described this morning by a visiting former student, has been “exponentially” for the worse.
His breathing is labored. A side effect, I believe, of the mass in his superior vena cava. After learning about it, it struck me that the mass is not only forcing fluid (plasma) from within the vessel through the vascular walls, to pool in his forearms. The mass is also greatly impeding overall circulation and, especially, pulmonary function: less blood through the lungs means less oxygen (O2) and carbon dioxide (CO2) exchange. Hence his chronic shortness of breath and need for the concentrator.
It is four months to the day that I first learned of his illness. I am suffering from a kind of cognitive dissonance: It seems both much longer and much shorter than that.
It is, simply, the end. My mother, a former Registered Nurse with experience in an oncology ward, does not expect him to survive through to Monday. None of us, I, my mother and sister and other relatives, nor his many friends are ready for this. But it is out of our control. We feel so helpless and fragile ourselves.
He will not finish his audio history. There was never the opportunity for me to record any of the remarkable stories of his youth that I remember him telling me at bedtime in my own childhood. I blame myself: Too much focus on work and not enough attention on what really mattered. I presumed I would have longer. I have cried for the lost opportunities. It is a lesson most painfully learned.
My mother and I, and his attendants and visiting friends, are all doing what we can to keep him comfortable. I gently rub his head and arms, which he likes, lubricate the interior of his desiccated mouth using a small moistened sponge on a long stick, fluff up his pillows and adjust his covers. The tasks are small but the disease is large and renders moot any attempts at greater efforts.*
I sit across from his bed, watching him. He is sleeping, snorning softly. Ocassionally over the past few days he will seem to stop breathing for a moment and his body will slump. Each time I tense: Is it his last? Up until now, that has always been followed by a wriggle or a shift, as he unconsciously tries to get comfortable in his bed. But it won’t be long. Tears are pooling behind a dam of temporary self–control.
It is a vigil.
*Such as surgery or radiation.
Monday, March 5, 2007
“On Borrowed Time”
I was almost certainly correct in my ‘chemical’ assessment last Friday. Well, more broadly, malnutrition (usually less than 200 calories a day, by my estimate; most people eat well over 1,000), insufficient hydration (sometimes less than eight ounces of fluid in a day) and certainly insufficient electrolytes significantly impaired my dad’s health. A three–day course of Pedialyte, which provides sodium and potassium, the two most essential bodily electrolytes, and glucose, the simple sugar on which cellular respiration depends (‘respiration ’ in this context refers to the intracellular oxidation of pyruvic acid, which is formed from splitting glucose molecules), has resulted in a noticable improvement in his alertness and coherency. No longer is he spending his days in a near stupor, eyes heavily lidded. But his overall health continues to markedly decline.
He has grown so weak that he can barely raise an arm. He is being tended to ’round–the–clock by the two Fijian women, now joined in shift rotation by the husband of one. They are taking great care of him and he appreciates them all. They are aided by a motorized hospital bed. By simply pressing buttons, he can be raised from a prone position or his legs and feet comfortably elevated. The bed has replaced the one in which my parents slept for decades, first in Illinois and then in Berkeley. My mother is sleeping down the hall in my sister’s room. My parents will never again sleep together. But at least my dad is much more comfortable and can be easily elevated rather than having to be physically [wo]man-handled and propped up with a bunch of pillows.
His activity has been harshly limited. He is unable to hold a book, unable to read, for which I feel very sorrowful. Reading has always been his greatest passion. The jammed bookshelves in his home and office are evidence of this love. He is relegated to simply watching television, looking out his bedroom window (granted, it has a broad, lovely view of San Francisco and the Golden Gate Bridge, in which beautiful sunsets are often visible) and chatting with whomever is available. It is a constrained and frequently tedious existence for someone who has lived such a life of the mind.
Last week, abruptly and with no warning, nor discussion of reasons and consequences with either of my parents, Dr. Canin, my dad’s oncologist at Walnut Creek Kaiser abruptly ceded responsibility for my dad’s care and turned it over to hospice care. That wasn’t by any means a bad thing. The nurse now supervising my dad’s care is a wonderful, pragmatic, forthright but very caring woman my parents and I all like and respect very much. Also, hospice supplied the aforementioned hospital bed and other equipment. But hospice is the last step, the point of no return. This was underscored as I sat by my dad’s bedside and listened to discussions of DNR directives (click on the link). All three of us were unprepared to learn that my father was beyond further treatment.
Further discussions with the hospice nurse have revealed that my father has far more serious problems than any of us knew. Such as a mass in his superior vena cava that, the nurse suggested, was forcing fluid out of the vessel which was then leaking into my dad’s arm causing the long—we thought—undiagnosable swelling. Okay, it’s not a definitive diagnosis but it is a reasonable one, which begs the question as to why Dr. Canin never even hypothesized it, let alone told us about the mass?
Now I know. Even though he is more alert, more coherent, more conversant, he is not going to leave that bed again. As my mother said this morning, as she and I walked together, he is living “on borrowed time.”
He has grown so weak that he can barely raise an arm. He is being tended to ’round–the–clock by the two Fijian women, now joined in shift rotation by the husband of one. They are taking great care of him and he appreciates them all. They are aided by a motorized hospital bed. By simply pressing buttons, he can be raised from a prone position or his legs and feet comfortably elevated. The bed has replaced the one in which my parents slept for decades, first in Illinois and then in Berkeley. My mother is sleeping down the hall in my sister’s room. My parents will never again sleep together. But at least my dad is much more comfortable and can be easily elevated rather than having to be physically [wo]man-handled and propped up with a bunch of pillows.
His activity has been harshly limited. He is unable to hold a book, unable to read, for which I feel very sorrowful. Reading has always been his greatest passion. The jammed bookshelves in his home and office are evidence of this love. He is relegated to simply watching television, looking out his bedroom window (granted, it has a broad, lovely view of San Francisco and the Golden Gate Bridge, in which beautiful sunsets are often visible) and chatting with whomever is available. It is a constrained and frequently tedious existence for someone who has lived such a life of the mind.
Last week, abruptly and with no warning, nor discussion of reasons and consequences with either of my parents, Dr. Canin, my dad’s oncologist at Walnut Creek Kaiser abruptly ceded responsibility for my dad’s care and turned it over to hospice care. That wasn’t by any means a bad thing. The nurse now supervising my dad’s care is a wonderful, pragmatic, forthright but very caring woman my parents and I all like and respect very much. Also, hospice supplied the aforementioned hospital bed and other equipment. But hospice is the last step, the point of no return. This was underscored as I sat by my dad’s bedside and listened to discussions of DNR directives (click on the link). All three of us were unprepared to learn that my father was beyond further treatment.
Further discussions with the hospice nurse have revealed that my father has far more serious problems than any of us knew. Such as a mass in his superior vena cava that, the nurse suggested, was forcing fluid out of the vessel which was then leaking into my dad’s arm causing the long—we thought—undiagnosable swelling. Okay, it’s not a definitive diagnosis but it is a reasonable one, which begs the question as to why Dr. Canin never even hypothesized it, let alone told us about the mass?
Now I know. Even though he is more alert, more coherent, more conversant, he is not going to leave that bed again. As my mother said this morning, as she and I walked together, he is living “on borrowed time.”
Friday, March 2, 2007
Chemistry
The last few days have seen a flurry of changes—none of them for the better. First was the long languishing oxygen finally being put to its intended use. It was rapidly replaced with an oxygen concetrator to guarantee my dad a constant flow of oxygen. Two nights ago, I saw him use his his walker for the first time. Yesterday was a watershed: A wheelchair arrived along with a motorized hospital bed to replace the flat queen bed that has been in his bedroom for 37 years. He will sleep alone; my mother moved into my sister’s old bedroom down the hall three weeks ago when co-sleeping became too difficult. The bed is motorized, eliminating the physical efforts of two or more people that have been recently required to ift my father from a prone to a semi-sitting position such that he can watch television or talk to visitors.
He continues to slide downhill, growing skinnier and weaker each day. Much of this decline I attribute not to the cancer but to his a simple lack of adequate nutrition, hydration and salt. Remember that just a few weeks ago there was unexpected and significant regression of his primary tumor.
He complains that he feels nauseous and cannot keep down food or liquids. I think he is starving and thirsting to death as much as or more than the cancer is killing him. My mother and I were in Dr. Canin’s office when he admonished my dad that it was very important that he eat—and that was at the very beginning of this whole experience.
Where does the salt come in? Well, high sodium levels (sodium being one of the two consituent elements in table salt; the other being chlorine; hence its chemical formula of NaCl) are contributory to hypertension and many other problems. But low sodium levels, such as occurs when someone ingests too little salt can be equally or even more problematic. Sodium is an electrolyte: a chemical that helps conduct or hold an electric charge. Electrolytes are commonly found in batteries. And in you. They are essential for proper operation of your nervous system; the propagation of electric impulses along your nerves and within your brain. You are an electrochmemical machine.
Hyponatremia, polyglot Greek and Latin for ‘low sodium’ is a condition where there is insufficient sodium in your blood stream, and consequently throughout your body. Symptoms include nausea, vomiting, headache and malaise [weakness and lethargy]. (At its worst, hyponatremia will kill you.) Sound familiar? Those are my dad’s principal symptoms. In fact, I think my dad is hypo-electrolytic: probably not the exact diagnosis but close enough. He is lacking adequate electrolytic salts (including other than sodium chloride) and essential metals, and indeed other essential minerals for his body to function well.
Why can’t he keep down liquids? Because they will further dilute the increasingly miniscule amounts of sodium necessary to keep his nervous system operating so his body rejects it. I’m off to the store to buy Pedialite, (yes, it’s for children, but a physician prescribed it for me a couple of years back when I had a several gastrointestinal bug) Gatorade or a similar beverage!
He continues to slide downhill, growing skinnier and weaker each day. Much of this decline I attribute not to the cancer but to his a simple lack of adequate nutrition, hydration and salt. Remember that just a few weeks ago there was unexpected and significant regression of his primary tumor.
He complains that he feels nauseous and cannot keep down food or liquids. I think he is starving and thirsting to death as much as or more than the cancer is killing him. My mother and I were in Dr. Canin’s office when he admonished my dad that it was very important that he eat—and that was at the very beginning of this whole experience.
Where does the salt come in? Well, high sodium levels (sodium being one of the two consituent elements in table salt; the other being chlorine; hence its chemical formula of NaCl) are contributory to hypertension and many other problems. But low sodium levels, such as occurs when someone ingests too little salt can be equally or even more problematic. Sodium is an electrolyte: a chemical that helps conduct or hold an electric charge. Electrolytes are commonly found in batteries. And in you. They are essential for proper operation of your nervous system; the propagation of electric impulses along your nerves and within your brain. You are an electrochmemical machine.
Hyponatremia, polyglot Greek and Latin for ‘low sodium’ is a condition where there is insufficient sodium in your blood stream, and consequently throughout your body. Symptoms include nausea, vomiting, headache and malaise [weakness and lethargy]. (At its worst, hyponatremia will kill you.) Sound familiar? Those are my dad’s principal symptoms. In fact, I think my dad is hypo-electrolytic: probably not the exact diagnosis but close enough. He is lacking adequate electrolytic salts (including other than sodium chloride) and essential metals, and indeed other essential minerals for his body to function well.
Why can’t he keep down liquids? Because they will further dilute the increasingly miniscule amounts of sodium necessary to keep his nervous system operating so his body rejects it. I’m off to the store to buy Pedialite, (yes, it’s for children, but a physician prescribed it for me a couple of years back when I had a several gastrointestinal bug) Gatorade or a similar beverage!
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