7/30/07
“It is by the goodness of God that in our country we have those unspeakably precious things: freedom of speech, freedom of conscience, and the prudence never to practice either of them.”
Following the Equator (1897) -- Mark Twain
It’s been one week today. The day is sublime. It’s 90 degrees inland but here on the beach it’s about 80 with a steady breeze. No flies. A pair of swaying Birch trees intermittently obscures my view of Black Rock point. Today begins a 3-4 day period where the chemicals should produce a drop in my white and red blood cell count. When I told the doc maybe this wouldn’t happen, I was informed that this was the desired effect. Nice! And so, as my chemo comrades know, “susceptibility” is a good thing. Train the immuno-suppression ray on ALL: the Emperor of Ice Cream’s invading horde and those long loyal mitochondrial legions that provide my mane. Death to all! Let the cellular wars rage: Collateral damage reports begin coming in on day 7, as an isolated outpost at Point Alpha Ulnar Marrow is overrun by Field Marshall Sagramostim. A squadron of special DNA busting Daisy Cutters is dispatched to destroy the enemy colonizers…
Mayday! Mayday!
…Storytelling is all too human. There must always be a reason, a story. We don’t really believe that “shit happens” philosophy. Admit it, you asked for it. You brought this on yourself: He smoked, she drank, bad diet, immoral living, overweight, philanderer, atheist, communist, non-Christian, Christian, pacifist, agnostic, Satanist, homosexual, out of tune, and so on. The cancer personality persists in a culture of psychology. It’s the ominous, opposing side of the pop culture coin of the realm: the power of negative thinking. I’m a cancerous being; my thoughts and habits are malignant; I’m diseased. Self-Help, the New Age Gospels, they can be of no help without asking, why me? (The Existentialist would say, why not?) Curiously, we don’t adopt this sensibility with animals. No one asks why Poofy died. It’s curious that we spare animals the inhumanities we so callously bestow on our fellow human beings, We think nothing of putting our pet out of its misery, yet we readily tolerate the pain and suffering of those close to us in the name of some outdated theological absurdity: “Sorry ma, you can beg all you want, I’m not gonna put you out of your misery.” “Sure, I love you ma, but not as much as God, your pain and suffering is up to him.” “Quit buggin’ me, it can’t be that bad. Suck it up!” “Look ma, you want me to got to hell? How selfish can you get, you’re willing to let me burn forever just because you’re suffering.” “Here’s a couple a aspirin, offer it up to Jesus.” I doubt that Jesus, one of my heroes, would abide human pain and suffering. Disturbingly, two areas of medicine that are woefully neglected in our culture, which is a curious phenomenon considering the all too often unquestioned assumption that we are an enlightened society, are Euthanasia and Palliative care. Considering the latter, do we really care if a 75-year-old woman in intractable pain might get hooked on drugs? Should I worry that she might steal my high-def TV, or prostitute herself at the hospice? As to the former, can we really justify resuscitating (see Newsweek, Barbara Huttman article, “A Crime of Compassion”) an end stage, terminally ill patient 57 Times! Why of course, as long as it’s in the name of a merciful God! Holy Saint Kervorkian! Perhaps we are not as enlightened as we think. Shouldn’t a secular society’s highest value be individual choice? Whose life is it anyway? If my choices don’t infringe on your autonomy, why should you dictate my actions? We’ve come a long way, baby. When octogenarian men are dictating what women should do with their bodies, we’re in big trouble. Of course, this same group of living fossils is poised to do away with habeas corpus as a fundamental tenant of American democracy. Notwithstanding the fact that H.L. Mencken described democracy as a system led by privileged jackals voted in by a majority of jackasses, it’s still the best thing going, right? I mean a free society must set the standard for the rest of the civilized world: Abu Graib (torture), Guantanamo (no due process), the Patriot Act (the abolishing of civil liberties), Reproductive Rights (a concerted effort to rescind Roe v Wade), and so it goes.
July 31, 2007
July 26, 2007
On Big Bay
7/25/07
“If anyone is unwilling to descend into himself, because this is too painful, he will remain superficial.”
-- Ludwig Wittgenstein
“One writes to become someone other than who one is. There is an attempt at modifying one’s way of being through the act of writing, an effort to get free of oneself, to let go of oneself.”
-- Michel Foucault
I had the first treatment on Monday. It was nothing like the nightmarish tale on Sunday’s blog. Aside from the length of my stay (5/1/2 hours) it was quite comfortable. Before being escorted to a spacious room with a view of the trees through a window across the hall, I was given a tour of the kitchen area where patients can either bring their own food or help themselves to bagels and juice. Making myself at home on the remote controlled bed, I awaited the arrival of my prescription. The toxic concoctions were mixed at the infusion pharmacy located within the chemo center (they don’t call it that), after which a saline solution drip was started. Shortly thereafter, a small bag of medicine was brought in. After checking and rechecking to make sure my dose and I matched, the treatment regimen began. At 9:00 I was given two Benadryl capsules and two Tylenol tablets. I assume the anti-histamine was meant to counter any allergic reaction I might have to the Rituximab, typically a red flushing of the body followed by a constriction of the throat resulting in a gasping, inability to breathe. Of course this was relayed to me at the end of the day (as it should be) by Kee, a kindly, reassuring, upbeat infusion nurse who made me feel comfortable and at ease about taking the drugs. At 9:30 the nurse introduced a slow IV. The Rituximab therapy takes the longest, 2-4 hours depending on the rate of infusion, so, given the cautionary time allowed for any possible reaction, the first day always takes the longest. After making sure I could tolerate the stuff, they turned up the flow. Aside from taking a Benadryl-induced nap I felt no discomfort. I read, I cell phoned, I daydreamed and I waited for some vague, insidious feeling of being ill to creep over me. It never came. Because it was my first time, everything went fairly fast. Next came the C.H. and O. part. I was given two anti-nausea pills and two mild steroids, (I’m not sure why the steroids) before the next phase. The C. (Cyclophosphamide) and the O. (Vincristine) are delivered through two giant syringes directly through ports in the IV line, the nurse patiently administers each over the course of about five minutes. The H. (Doxorubicin) requires an infusion bag, which drips in over a 30 minute to an hour time period. One of these drugs gave my urine a reddish pink color, which was wholly un-alarming and passed before I left the treatment center. Before starting the C.H.O. phase, Kee said, “It’s all down hill from here, the Rituximab is the hardest part.” For me the first four hours had all been fairly uneventful, but it doesn’t take an Einstein to figure out the anti-nausea meds are given for a reason. Long story short, the last part never did bother me, and I was raring to get out and drive to the shores of Lake Superior in Michigan’s Upper Peninsula. Oh, about the P. (Prednisone), Prednisone is the steroid aspect of the regimen. On days 2 through 5 following the treatment, two tablets are given once a day.
What I had commonly heard was that one begins to feel a bit fatigued on day three. I’m still waiting. In fact, for whatever reason (maybe the steroids) the low-grade pain in my kidney area, the symptom that resulted in my first going in, subsided and I now feel better than I have in two months! Go figure. We left Ann Arbor at 4-ish last Monday and arrived in Big Bay, 30 miles northwest of Marquette, at 12:10 A.M. on Tuesday. It’s Thursday and I’m feeling fine. Knock on wood. I’ve been swimming a ½ mile in the big lake every day since I got here. This is a salubrious activity for two reasons: 1) it’s good exercise, and 2) if you can swim for an extended length of time in the cold waters of Lake Superior, you know you’re alive. Following the swim, as a rejuvenating Finnish health ritual, a session in a hot sauna followed by a dousing in the cold lake water is repeated 3 times. On the third repetition, cold water is thrown on the rocks, producing a tsunamic wave of heat so intense as to suspend the ability to breathe, and hence sends the sauna loving subject fleeing to the bosom of Mother Superior. An aside: some of you, kind friends, might wonder why I’m trying to carefully detail this. My intention is to relieve any dread or anxiety for those with Lymphoma who might visit this blog.
I suppose one would have to visit every place in the world to say which is the most beautiful, but Big Bay in late July and early August has to qualify. Maybe it’s the Milky Way swath night sky so clear it all but identifies the constellations with meteor shower captions. Or the sight of a blue, sky high humidity swirling haze that shrouds the shimmering iron cliffs that enclose the bays of Gitchee Gumee. At the mouth of the Salmon Trout, three eagles cruise the sands above Loon and Heron while two Black bears retreat to the woods on the approach of the kayaks. Looking south from the source of the Iron River at Lake Independence, the mountains sprawl across the horizon in cedar greens and pine blues. Walking east from the middle of Squaw Beach the cliffs on the opposite point gradually stretch and fade as the Huron Mountains majestically arise from the retreating cliffs. The sublimity of nature resists description. It’s much easier to describe a medical procedure than a sunset.
Tomorrow I fly to Detroit to play music. On Sunday I fly back. Me, my doctor, my circle of friends, and those closest to me have wondered about my being able to keep up with a fairly busy musical schedule while taking the treatment and dealing with the side-effects. So far, so good. Tomorrow I’ll go from the airport to a blood draw, home to Ann Arbor to load equipment, then west to the Chelsea Music Festival where FUBAR performs at 5 and George Bedard at 7:30. Peace my brothers and sisters!
“If anyone is unwilling to descend into himself, because this is too painful, he will remain superficial.”
-- Ludwig Wittgenstein
“One writes to become someone other than who one is. There is an attempt at modifying one’s way of being through the act of writing, an effort to get free of oneself, to let go of oneself.”
-- Michel Foucault
I had the first treatment on Monday. It was nothing like the nightmarish tale on Sunday’s blog. Aside from the length of my stay (5/1/2 hours) it was quite comfortable. Before being escorted to a spacious room with a view of the trees through a window across the hall, I was given a tour of the kitchen area where patients can either bring their own food or help themselves to bagels and juice. Making myself at home on the remote controlled bed, I awaited the arrival of my prescription. The toxic concoctions were mixed at the infusion pharmacy located within the chemo center (they don’t call it that), after which a saline solution drip was started. Shortly thereafter, a small bag of medicine was brought in. After checking and rechecking to make sure my dose and I matched, the treatment regimen began. At 9:00 I was given two Benadryl capsules and two Tylenol tablets. I assume the anti-histamine was meant to counter any allergic reaction I might have to the Rituximab, typically a red flushing of the body followed by a constriction of the throat resulting in a gasping, inability to breathe. Of course this was relayed to me at the end of the day (as it should be) by Kee, a kindly, reassuring, upbeat infusion nurse who made me feel comfortable and at ease about taking the drugs. At 9:30 the nurse introduced a slow IV. The Rituximab therapy takes the longest, 2-4 hours depending on the rate of infusion, so, given the cautionary time allowed for any possible reaction, the first day always takes the longest. After making sure I could tolerate the stuff, they turned up the flow. Aside from taking a Benadryl-induced nap I felt no discomfort. I read, I cell phoned, I daydreamed and I waited for some vague, insidious feeling of being ill to creep over me. It never came. Because it was my first time, everything went fairly fast. Next came the C.H. and O. part. I was given two anti-nausea pills and two mild steroids, (I’m not sure why the steroids) before the next phase. The C. (Cyclophosphamide) and the O. (Vincristine) are delivered through two giant syringes directly through ports in the IV line, the nurse patiently administers each over the course of about five minutes. The H. (Doxorubicin) requires an infusion bag, which drips in over a 30 minute to an hour time period. One of these drugs gave my urine a reddish pink color, which was wholly un-alarming and passed before I left the treatment center. Before starting the C.H.O. phase, Kee said, “It’s all down hill from here, the Rituximab is the hardest part.” For me the first four hours had all been fairly uneventful, but it doesn’t take an Einstein to figure out the anti-nausea meds are given for a reason. Long story short, the last part never did bother me, and I was raring to get out and drive to the shores of Lake Superior in Michigan’s Upper Peninsula. Oh, about the P. (Prednisone), Prednisone is the steroid aspect of the regimen. On days 2 through 5 following the treatment, two tablets are given once a day.
What I had commonly heard was that one begins to feel a bit fatigued on day three. I’m still waiting. In fact, for whatever reason (maybe the steroids) the low-grade pain in my kidney area, the symptom that resulted in my first going in, subsided and I now feel better than I have in two months! Go figure. We left Ann Arbor at 4-ish last Monday and arrived in Big Bay, 30 miles northwest of Marquette, at 12:10 A.M. on Tuesday. It’s Thursday and I’m feeling fine. Knock on wood. I’ve been swimming a ½ mile in the big lake every day since I got here. This is a salubrious activity for two reasons: 1) it’s good exercise, and 2) if you can swim for an extended length of time in the cold waters of Lake Superior, you know you’re alive. Following the swim, as a rejuvenating Finnish health ritual, a session in a hot sauna followed by a dousing in the cold lake water is repeated 3 times. On the third repetition, cold water is thrown on the rocks, producing a tsunamic wave of heat so intense as to suspend the ability to breathe, and hence sends the sauna loving subject fleeing to the bosom of Mother Superior. An aside: some of you, kind friends, might wonder why I’m trying to carefully detail this. My intention is to relieve any dread or anxiety for those with Lymphoma who might visit this blog.
I suppose one would have to visit every place in the world to say which is the most beautiful, but Big Bay in late July and early August has to qualify. Maybe it’s the Milky Way swath night sky so clear it all but identifies the constellations with meteor shower captions. Or the sight of a blue, sky high humidity swirling haze that shrouds the shimmering iron cliffs that enclose the bays of Gitchee Gumee. At the mouth of the Salmon Trout, three eagles cruise the sands above Loon and Heron while two Black bears retreat to the woods on the approach of the kayaks. Looking south from the source of the Iron River at Lake Independence, the mountains sprawl across the horizon in cedar greens and pine blues. Walking east from the middle of Squaw Beach the cliffs on the opposite point gradually stretch and fade as the Huron Mountains majestically arise from the retreating cliffs. The sublimity of nature resists description. It’s much easier to describe a medical procedure than a sunset.
Tomorrow I fly to Detroit to play music. On Sunday I fly back. Me, my doctor, my circle of friends, and those closest to me have wondered about my being able to keep up with a fairly busy musical schedule while taking the treatment and dealing with the side-effects. So far, so good. Tomorrow I’ll go from the airport to a blood draw, home to Ann Arbor to load equipment, then west to the Chelsea Music Festival where FUBAR performs at 5 and George Bedard at 7:30. Peace my brothers and sisters!
July 22, 2007
Dreams
7/22/07
“The right to happiness is fundamental:/ men live so little time and die alone.”
Bertolt Brecht – The Threepenny Opera, 1928
Friends and neighbors! Greetings and salutations! If my black humor sometimes seems over the top, remember two things: it’s my disease and I’m trying to be funny, and sometimes grim. Remember, in the words of Conway Twitty, it’s only make-believe. Consider the dream I had last night….a night of the living dead Zombie in nurses clothes lumbers aimlessly around a Caligaristic waiting room calling, “Randall Tessier, Randall Tessier.” Cringing under an out of tune piano being played by a twisted cuckoos nester clad in plaid I try to tell myself this is a blood draw and not the toxic infusion I so dread. IV poles in tow, the sad, gaunt faces of the bald and mangy point at me laughing, crying, “abandon all hope ye who enter here!” Dancing around them like ring around the rosy plaguesters, the newly initiated chant slogans from inspirational literature, “No pain, no gain! No Pain, no gain!” and then suddenly switch to “Bring out your dead! Bring out your dead!” Meanwhile, a dog dyed dark green wanders in and takes a fluorescent orange piss on a candy cane fire hydrant. Suddenly, heralded by the sounds of trumpets and hosannas, a squadron of ghoulish nurses enter in masks and KKK robes to begin the black magic “ablations,” promising the immediate vaporization of my lymphic, magnetic tadpoles. Wearing masks with garish beaks, disco platforms with live goldfish in transparent heels, and tee shirts adorned with Tammy Fayes in various poses, they admonish my cringing as the cowardly act of a man that doesn’t know what’s good for him.
Waking up in a cold sweat, and vowing to write down everything I remember, I type out the following letter:
To the Ann Arbor News: Letters or Other Voices
Some Lesser Known Local Heroes
7/22/07
Those of you who saw the Saturday, July 14, 2007 New York Times front page story, “2 Lymphoma Drugs Go Unused, And Backers Cite Market Forces,” may not know that this piece reflects the critical importance of medical research now going on in Ann Arbor. The crux of the Times article has to do with a radical new treatment called radioimmunomtherapy. Pioneered by Dr. Mark Kaminski, M.D., Director of the Adult Hematology Clinic at the University of Michigan, radioimmunotherapy uses radioactive antibodies to search out malignant tumor cells and kill them. Rather than repeated cycles of chemo and side effects that take several months, the patient receives ONE test injection at the beginning of the week, and ONE therapeutic dose of Bexxar, the first of a new class of drugs called Radioimmunotherapies, later in the week, which is usually sufficient. That‘s it! Side effects? Blood counts may be lower in the weeks following the treatment. Nausea is rare and there is no hair loss. For those of you afflicted with Non-Hodgkins Lymphoma, a disease of the immune system that is the fifth most common cancer in the United States, what this therapy represents is an alternative to the misery of chemotherapy and the possibility of a better clinical outcome. With a single treatment of Bexxar, significant tumor regressions, including complete remissions, were observed in 70% of patients who had were either relapsed or unresponsive to prior chemo treatments. In fact, 86 % of those treated were alive and well and half had not relapsed eight years out from their out from the Bexxar therapy, according to the University of Michigan Comprehensive Cancer Center.
Why am I writing about this? I have three reasons: 1) it is less a choice than a duty to enlighten those who lack access to life-saving information via media resources, access directly related to one’s socio-economic circumstances; 2) having been recently diagnosed with aggressive, large cell Non-Hodgkins Lymphoma, I have a personal interest in understanding and promoting information related to advances in the treatment of a cancer that’s becoming more and more prevalent. Concerning the increase in numbers of those diagnosed with this disease, Alex Berenson writes, “Unlike some other cancers, lymphoma appears to be becoming more common; scientists do not know why.”
So what’s the third reason? To bring attention to the work of Dr. Mark Kaminski, his former U-M colleague, Richard Wahl, and all those who helped develop the Bexxar therapeutic regimen. While this therapy has only been used to treat follicular (non-aggressive) Lymphomas, it offers future possibilities for cases like mine. Finally, I can’t say enough about the excellence of care offered by the U-M Cancer Center. My physician, Dr. Asra Ahmed, has called me on weekends, forwarded my e-mails to Dr. Kaminski, read and forwarded my blog to those who might be interested, and insistently kept me in the loop on my diagnostic results and (because she knows of my interest in the research) all of the relevant studies being done on Lymphoma. And so my friends, I go to my first chemo treatment tomorrow.
Best to You and Yours – Randy Tessier
“The right to happiness is fundamental:/ men live so little time and die alone.”
Bertolt Brecht – The Threepenny Opera, 1928
Friends and neighbors! Greetings and salutations! If my black humor sometimes seems over the top, remember two things: it’s my disease and I’m trying to be funny, and sometimes grim. Remember, in the words of Conway Twitty, it’s only make-believe. Consider the dream I had last night….a night of the living dead Zombie in nurses clothes lumbers aimlessly around a Caligaristic waiting room calling, “Randall Tessier, Randall Tessier.” Cringing under an out of tune piano being played by a twisted cuckoos nester clad in plaid I try to tell myself this is a blood draw and not the toxic infusion I so dread. IV poles in tow, the sad, gaunt faces of the bald and mangy point at me laughing, crying, “abandon all hope ye who enter here!” Dancing around them like ring around the rosy plaguesters, the newly initiated chant slogans from inspirational literature, “No pain, no gain! No Pain, no gain!” and then suddenly switch to “Bring out your dead! Bring out your dead!” Meanwhile, a dog dyed dark green wanders in and takes a fluorescent orange piss on a candy cane fire hydrant. Suddenly, heralded by the sounds of trumpets and hosannas, a squadron of ghoulish nurses enter in masks and KKK robes to begin the black magic “ablations,” promising the immediate vaporization of my lymphic, magnetic tadpoles. Wearing masks with garish beaks, disco platforms with live goldfish in transparent heels, and tee shirts adorned with Tammy Fayes in various poses, they admonish my cringing as the cowardly act of a man that doesn’t know what’s good for him.
Waking up in a cold sweat, and vowing to write down everything I remember, I type out the following letter:
To the Ann Arbor News: Letters or Other Voices
Some Lesser Known Local Heroes
7/22/07
Those of you who saw the Saturday, July 14, 2007 New York Times front page story, “2 Lymphoma Drugs Go Unused, And Backers Cite Market Forces,” may not know that this piece reflects the critical importance of medical research now going on in Ann Arbor. The crux of the Times article has to do with a radical new treatment called radioimmunomtherapy. Pioneered by Dr. Mark Kaminski, M.D., Director of the Adult Hematology Clinic at the University of Michigan, radioimmunotherapy uses radioactive antibodies to search out malignant tumor cells and kill them. Rather than repeated cycles of chemo and side effects that take several months, the patient receives ONE test injection at the beginning of the week, and ONE therapeutic dose of Bexxar, the first of a new class of drugs called Radioimmunotherapies, later in the week, which is usually sufficient. That‘s it! Side effects? Blood counts may be lower in the weeks following the treatment. Nausea is rare and there is no hair loss. For those of you afflicted with Non-Hodgkins Lymphoma, a disease of the immune system that is the fifth most common cancer in the United States, what this therapy represents is an alternative to the misery of chemotherapy and the possibility of a better clinical outcome. With a single treatment of Bexxar, significant tumor regressions, including complete remissions, were observed in 70% of patients who had were either relapsed or unresponsive to prior chemo treatments. In fact, 86 % of those treated were alive and well and half had not relapsed eight years out from their out from the Bexxar therapy, according to the University of Michigan Comprehensive Cancer Center.
Why am I writing about this? I have three reasons: 1) it is less a choice than a duty to enlighten those who lack access to life-saving information via media resources, access directly related to one’s socio-economic circumstances; 2) having been recently diagnosed with aggressive, large cell Non-Hodgkins Lymphoma, I have a personal interest in understanding and promoting information related to advances in the treatment of a cancer that’s becoming more and more prevalent. Concerning the increase in numbers of those diagnosed with this disease, Alex Berenson writes, “Unlike some other cancers, lymphoma appears to be becoming more common; scientists do not know why.”
So what’s the third reason? To bring attention to the work of Dr. Mark Kaminski, his former U-M colleague, Richard Wahl, and all those who helped develop the Bexxar therapeutic regimen. While this therapy has only been used to treat follicular (non-aggressive) Lymphomas, it offers future possibilities for cases like mine. Finally, I can’t say enough about the excellence of care offered by the U-M Cancer Center. My physician, Dr. Asra Ahmed, has called me on weekends, forwarded my e-mails to Dr. Kaminski, read and forwarded my blog to those who might be interested, and insistently kept me in the loop on my diagnostic results and (because she knows of my interest in the research) all of the relevant studies being done on Lymphoma. And so my friends, I go to my first chemo treatment tomorrow.
Best to You and Yours – Randy Tessier
July 20, 2007
Lymphomania
7/20/07
"Hope, as deceitful as it is, serves at least to lead us to the end of our lives by an agreeable route."
--La Rochefoucauld, Maxims 1665
Today was the day. 9:30: Meeting with Doctor Ahmed. I suppose I should talk about my disease: about prophylactic chemo injections that reinforce the blood brain barrier; about gazing at the galaxy of twinkling tumors that is me; about the unknown compatibility of the Rituximab and Hepatatic deities; about gig-friendly self-injectable Tour de France blood enhancers; about the distinctive differences between bone and bone marrow; about quixotic hopes and experimental studies; and about wooden stakes through the hearts of lymphomaniac vampires. Well, maybe not that last clause. While not physically ill yet, I’m already getting sick (excuse the pun) of writing about it. Long story short, they’re still collating. They might want to adjust the treatment. Rather than the day after the night of Gethsemene, I’ve gained a temporary reprieve from my voluntary poisoning; from my transformation into a walking, talking toxic doll, or dump, depending on the outcome. Kindly Doctor Ahmed is going to call my cell as soon as she has the necessary information, so that I might possibly still be able to get the chemo today. I’m so excited!
On a lighter note, allow me to share some random thoughts. Notwithstanding that I should count my blessings, and that I’m a veteran cocktailer who’s had the good fortune of knowing how to avoid the 9 to 5, I’m still of a mind that it’s hard to relax in this world, even for a professional like me. Assuming that libidinal satisfaction is a form of relaxation, I recently received a call from a caring friend concerning the upcoming separation of me and my alter-ego, Don Juan. Like a lot of you silly geese out there, he erroneously thought I might be worried about losing my mojo. Nothing could be further from the truth. Shame on all of you for even remotely entertaining that thought, you obviously know very little about my past reputation, Catholic school, altar boy etc.. Okay, so I’m lying. Actually a bout of chemo induced celibacy might temporarily eliminate the possibility of my repeating a mistake that has plagued me all my life: letting the wrong head do the thinking. Later…
"Hope, as deceitful as it is, serves at least to lead us to the end of our lives by an agreeable route."
--La Rochefoucauld, Maxims 1665
Today was the day. 9:30: Meeting with Doctor Ahmed. I suppose I should talk about my disease: about prophylactic chemo injections that reinforce the blood brain barrier; about gazing at the galaxy of twinkling tumors that is me; about the unknown compatibility of the Rituximab and Hepatatic deities; about gig-friendly self-injectable Tour de France blood enhancers; about the distinctive differences between bone and bone marrow; about quixotic hopes and experimental studies; and about wooden stakes through the hearts of lymphomaniac vampires. Well, maybe not that last clause. While not physically ill yet, I’m already getting sick (excuse the pun) of writing about it. Long story short, they’re still collating. They might want to adjust the treatment. Rather than the day after the night of Gethsemene, I’ve gained a temporary reprieve from my voluntary poisoning; from my transformation into a walking, talking toxic doll, or dump, depending on the outcome. Kindly Doctor Ahmed is going to call my cell as soon as she has the necessary information, so that I might possibly still be able to get the chemo today. I’m so excited!
On a lighter note, allow me to share some random thoughts. Notwithstanding that I should count my blessings, and that I’m a veteran cocktailer who’s had the good fortune of knowing how to avoid the 9 to 5, I’m still of a mind that it’s hard to relax in this world, even for a professional like me. Assuming that libidinal satisfaction is a form of relaxation, I recently received a call from a caring friend concerning the upcoming separation of me and my alter-ego, Don Juan. Like a lot of you silly geese out there, he erroneously thought I might be worried about losing my mojo. Nothing could be further from the truth. Shame on all of you for even remotely entertaining that thought, you obviously know very little about my past reputation, Catholic school, altar boy etc.. Okay, so I’m lying. Actually a bout of chemo induced celibacy might temporarily eliminate the possibility of my repeating a mistake that has plagued me all my life: letting the wrong head do the thinking. Later…
July 19, 2007
Radioimmunotherapy
7/18/07
“Both Zevalin and Bexxar are very good products. It is astounding and disappointing that they are used so little.”
Dr. Oliver W. Press – Chairman of the scientific advisory board of the Lymphoma Research Foundation
The above quote from the front page of the Saturday, July 14 New York Times story, “2 Lymphoma Drugs Go Unused, And Backers Cite Market Forces” concerns a radical new treatment that is an alternative to traditional chemotherapy. It’s called radioimmunotherapy (Google it). Pioneered by Dr. Mark Kaminski, M.D., Director of the Adult Hematology Clinic at the University of Michigan, radioimmunotherapy uses radioactive antibodies to search out malignant tumor cells. Rather than the repeated cycles of chemo and side effects that take several months, the patient receives ONE test injection at the beginning of the week, and ONE therapeutic dose later in the week. That ‘s it! Side effects? Blood counts may be lower in the weeks following the treatment. Nausea is rare and there is no hair loss. Before saying more I should point out that most of the research has been done on Follicular (indolent) rather than Large Cell (aggressive) Lymphomas. Did I mention that tomorrow I go in for the R-Karate C.H.O.P.. R is for Rituxan, the gold standard of Chemo treatment since it was approved in 1997. But if immunotherapy is not for me, it may be for you my fellow sufferers. My intention here is to bring this story and the hope it carries to those who don’t can’t read the literature and comb the net for the latest medical information.
I’m off to a day of testing, MUGA, CT, PET. Later.
“Both Zevalin and Bexxar are very good products. It is astounding and disappointing that they are used so little.”
Dr. Oliver W. Press – Chairman of the scientific advisory board of the Lymphoma Research Foundation
The above quote from the front page of the Saturday, July 14 New York Times story, “2 Lymphoma Drugs Go Unused, And Backers Cite Market Forces” concerns a radical new treatment that is an alternative to traditional chemotherapy. It’s called radioimmunotherapy (Google it). Pioneered by Dr. Mark Kaminski, M.D., Director of the Adult Hematology Clinic at the University of Michigan, radioimmunotherapy uses radioactive antibodies to search out malignant tumor cells. Rather than the repeated cycles of chemo and side effects that take several months, the patient receives ONE test injection at the beginning of the week, and ONE therapeutic dose later in the week. That ‘s it! Side effects? Blood counts may be lower in the weeks following the treatment. Nausea is rare and there is no hair loss. Before saying more I should point out that most of the research has been done on Follicular (indolent) rather than Large Cell (aggressive) Lymphomas. Did I mention that tomorrow I go in for the R-Karate C.H.O.P.. R is for Rituxan, the gold standard of Chemo treatment since it was approved in 1997. But if immunotherapy is not for me, it may be for you my fellow sufferers. My intention here is to bring this story and the hope it carries to those who don’t can’t read the literature and comb the net for the latest medical information.
I’m off to a day of testing, MUGA, CT, PET. Later.
July 18, 2007
Carnival Therapy
7/18/07
“In another place villagers were seen dancing to drums and trumpets, and on being asked the reason, answered that, seeing their neighbors die day after day while their village remained immune, they believed that they could keep the plague from entering, by the ‘jollity that is in us. That is why we dance.’”
The Black Death –Barbara Tuchman
I know “new age mumbo jumbo” sounds harsh, but let's face it, visualizing my disease from the viewpoint of Dirty Harry or Mr. Rogers is probably just as ineffectual as the rituals of those “jollity” medievals who attached glass jars with wasps in them to the tumors of their brethren.
Ah, visualization. As if we could imagine illness away. We’re relieved to know that our dreams have nothing to do with realty, yet heartily endorse the folly that a sort of fictional clairvoyance, mind over matter, can affect a cure. Through visualization I can ride the train through the villages of Lymph, stopping to become friends with the glandular denizens. Over an afternoon tea of Sheep Sorrel, Turkey Rhubarb, Slippery Elm, and Burdock Root we can discuss remissions, the merits of a chronic truce, and the always hoped for peaceful remission. Cancer’s my friend.
Grrrr. Cancer’s my enemy! Bad cancer! Heel! I said heel! I’ll set up a network of spies in Lymph and sabotage the plans of the axis of evil. Ala James Bond I will unleash the forces of Tositumomab on the evildoers. Marshalling all of the metaphors I can muster I will eliminate the vermin within me. I’ll launch a blitzkrieg on the very word used to launch blitzkriegs and surges. I will be the one who invades and colonizes. The side-effects of Chemo will hereafter be referred to as collateral damage. Sontag writes, “The modern disease metaphors are all cheap shots….The cancer metaphor is particularly crass. It is invariably an encouragement to simplify what is complex and an invitation to self-righteousness, if not to fanaticism.”
Flash! I just got a call from a concerned new age friend. Seriously. “Randy, you live in the city of healers.” I thought, yeah, you're right. Ann Arbor has one of the best research hospitals in the world. But I knew where she was going. “All illness comes from blocked energy within the body.” Oh really? We’ve got alt-country and alt-rock, why not alt-science. Alt sounds so much better than pseudo. She continued. “The blocked energy must be released and moved from the body. I have the number of a shamanic healer who can help you. I’ll give it to you.” Pure Belgian snake oil, bottom fermented. I know, if it helps it’s good. Please, spare me the bio-feedback. Gotta go!
“In another place villagers were seen dancing to drums and trumpets, and on being asked the reason, answered that, seeing their neighbors die day after day while their village remained immune, they believed that they could keep the plague from entering, by the ‘jollity that is in us. That is why we dance.’”
The Black Death –Barbara Tuchman
I know “new age mumbo jumbo” sounds harsh, but let's face it, visualizing my disease from the viewpoint of Dirty Harry or Mr. Rogers is probably just as ineffectual as the rituals of those “jollity” medievals who attached glass jars with wasps in them to the tumors of their brethren.
Ah, visualization. As if we could imagine illness away. We’re relieved to know that our dreams have nothing to do with realty, yet heartily endorse the folly that a sort of fictional clairvoyance, mind over matter, can affect a cure. Through visualization I can ride the train through the villages of Lymph, stopping to become friends with the glandular denizens. Over an afternoon tea of Sheep Sorrel, Turkey Rhubarb, Slippery Elm, and Burdock Root we can discuss remissions, the merits of a chronic truce, and the always hoped for peaceful remission. Cancer’s my friend.
Grrrr. Cancer’s my enemy! Bad cancer! Heel! I said heel! I’ll set up a network of spies in Lymph and sabotage the plans of the axis of evil. Ala James Bond I will unleash the forces of Tositumomab on the evildoers. Marshalling all of the metaphors I can muster I will eliminate the vermin within me. I’ll launch a blitzkrieg on the very word used to launch blitzkriegs and surges. I will be the one who invades and colonizes. The side-effects of Chemo will hereafter be referred to as collateral damage. Sontag writes, “The modern disease metaphors are all cheap shots….The cancer metaphor is particularly crass. It is invariably an encouragement to simplify what is complex and an invitation to self-righteousness, if not to fanaticism.”
Flash! I just got a call from a concerned new age friend. Seriously. “Randy, you live in the city of healers.” I thought, yeah, you're right. Ann Arbor has one of the best research hospitals in the world. But I knew where she was going. “All illness comes from blocked energy within the body.” Oh really? We’ve got alt-country and alt-rock, why not alt-science. Alt sounds so much better than pseudo. She continued. “The blocked energy must be released and moved from the body. I have the number of a shamanic healer who can help you. I’ll give it to you.” Pure Belgian snake oil, bottom fermented. I know, if it helps it’s good. Please, spare me the bio-feedback. Gotta go!
July 17, 2007
Expecting Rain
7/17/07
Late afternoon. Took a look at Macklin Smith’s book of poetry, Transplant, as a way of finding a compelling epigraph. Cool stuff, but its too early in the game for chemical descriptions. I highlighted some lines for later.
I play in a band. Last night at practice I was lamenting the possibility of my libido taking a sabbatical. The drummer said, “Don’t worry, your sex drive will come back.” I said, “I know, but I hate to see it go. I’m going to miss it.” Then I said, “Seriously, having cancer has gotten me to pay closer attention to who I am and what I do. Take for instance my gambling. I was at the casino the other night and the cards took on a new meaning. I could look through them! Call it magical thinking. Maybe it’s my new eyes, perhaps a heightened sensibility to the Ace as the thing in itself! A sense of the Kingness of the facecard rather than the particular card dealt. My band mates looked at me with a sense of awe, or better, curiosity, the way a quizzical crowd looks at a monkey masturbating at the Zoo. Is he nuts? We were rehearsing Dylan’s “Positively Fourth Street” for the upcoming Dylanfest at The Blind Pig in Ann Arbor. The lyrics to that one always leave me wondering why he doesn’t just come out and tell us how he really feels.
It rained all day. (The curse of the blinking cursor) Now it’s doing it again, and again. O.K, I’ll write something. The modern tendency to assign psychological reasons for why one gets cancer is a worthy topic. I must have done something wrong. Rather than God’s punishing me for my dissolution and debauchery (the Christian view), it must be an attitudinal flaw, a symptom of existential isolation and loneliness (the secular view). I can’t help but think the new age psychological mumbo jumbo is simply a secular substitute for a supernatural mindset hard wired in the human psyche; disease as having a connection with intention. A condition that assumes words like blame, fault, and guilt has something to do with cancer. As Sontag puts it, “Psychologizing seems to provide control over the experiences and events (like grave illnesses) over which people have in fact little or no control.” In truth, as she goes on to say,” no oncologist convinced of the efficacy of polychemotherapy and immunotherapy in treating patients has contributed to the fictions about a specific cancer personality.” Tommorow.
Late afternoon. Took a look at Macklin Smith’s book of poetry, Transplant, as a way of finding a compelling epigraph. Cool stuff, but its too early in the game for chemical descriptions. I highlighted some lines for later.
I play in a band. Last night at practice I was lamenting the possibility of my libido taking a sabbatical. The drummer said, “Don’t worry, your sex drive will come back.” I said, “I know, but I hate to see it go. I’m going to miss it.” Then I said, “Seriously, having cancer has gotten me to pay closer attention to who I am and what I do. Take for instance my gambling. I was at the casino the other night and the cards took on a new meaning. I could look through them! Call it magical thinking. Maybe it’s my new eyes, perhaps a heightened sensibility to the Ace as the thing in itself! A sense of the Kingness of the facecard rather than the particular card dealt. My band mates looked at me with a sense of awe, or better, curiosity, the way a quizzical crowd looks at a monkey masturbating at the Zoo. Is he nuts? We were rehearsing Dylan’s “Positively Fourth Street” for the upcoming Dylanfest at The Blind Pig in Ann Arbor. The lyrics to that one always leave me wondering why he doesn’t just come out and tell us how he really feels.
It rained all day. (The curse of the blinking cursor) Now it’s doing it again, and again. O.K, I’ll write something. The modern tendency to assign psychological reasons for why one gets cancer is a worthy topic. I must have done something wrong. Rather than God’s punishing me for my dissolution and debauchery (the Christian view), it must be an attitudinal flaw, a symptom of existential isolation and loneliness (the secular view). I can’t help but think the new age psychological mumbo jumbo is simply a secular substitute for a supernatural mindset hard wired in the human psyche; disease as having a connection with intention. A condition that assumes words like blame, fault, and guilt has something to do with cancer. As Sontag puts it, “Psychologizing seems to provide control over the experiences and events (like grave illnesses) over which people have in fact little or no control.” In truth, as she goes on to say,” no oncologist convinced of the efficacy of polychemotherapy and immunotherapy in treating patients has contributed to the fictions about a specific cancer personality.” Tommorow.
July 16, 2007
Blindness and Insight
7/16/07
“O gods! Who is’t can say “I am at the worst”?
I am worse than e’er I was
And worse I may be yet. The worst is not
So long as we can say “This is the worst.”
-- Edgar, King Lear
An irony in all of this concerns a miracle of science visited on me shortly before my diagnosis. In April and May I had staggered cataract surgeries in both eyes that put me in touch with a visual world I had been increasingly estranged from. I could see! The waxed paper veil that had gradually shrouded my vision over the years was suddenly lifted from me. I looked out my window and saw a Pileated Woodpecker pecking the bark of Silver Maple. I followed the languid leaps of a slow moving garden Toad crouching admidst a camouflage of dead leaves and new grass. Suddenly its tongue shot out and swallowed a Japanese beetle, its body shuddering slightly while digesting a mid-day repast. I could see!
OK, so I’m getting carried away. What this wondrous restoration left me to ponder was how the supreme species in the biological kingdom, an animal that can create cathedrals and cure the dying, can also descend to the level of creating poison gases, atomic bombs, and concentration camps. The theosophical ideology behind the creation of Notre Dame is the same belief system that justified crusading down the Danube to slay the Islamic infidels while killing every Jew, Gypsy, and Homosexual along the way. Ah Humanity! If you think that disease is an apolitical issue you might ask why this aside. For me, politics has to do with ethics and morality. There is no escaping the fact that reproductive rights, stem cell research and universal health care have a political valence.
Getting back to irony and eye surgeries. The personal epiphany I’ve experienced since the diagnosis has given me a psychological insight no clarity of physical vision could ever provide. In the words of Lear, "I stumbled when I saw.” While the goal of therapy is to induce self-enlightenment through personal examination, there is nothing to compare to a glimpse of one’s own mortality as a means of gaining spiritual insight. There is no avoiding asking yourself who you really are.
By the way, I'm ecstatic! The doctor called and said my bone marrow biopsy was negative.
“O gods! Who is’t can say “I am at the worst”?
I am worse than e’er I was
And worse I may be yet. The worst is not
So long as we can say “This is the worst.”
-- Edgar, King Lear
An irony in all of this concerns a miracle of science visited on me shortly before my diagnosis. In April and May I had staggered cataract surgeries in both eyes that put me in touch with a visual world I had been increasingly estranged from. I could see! The waxed paper veil that had gradually shrouded my vision over the years was suddenly lifted from me. I looked out my window and saw a Pileated Woodpecker pecking the bark of Silver Maple. I followed the languid leaps of a slow moving garden Toad crouching admidst a camouflage of dead leaves and new grass. Suddenly its tongue shot out and swallowed a Japanese beetle, its body shuddering slightly while digesting a mid-day repast. I could see!
OK, so I’m getting carried away. What this wondrous restoration left me to ponder was how the supreme species in the biological kingdom, an animal that can create cathedrals and cure the dying, can also descend to the level of creating poison gases, atomic bombs, and concentration camps. The theosophical ideology behind the creation of Notre Dame is the same belief system that justified crusading down the Danube to slay the Islamic infidels while killing every Jew, Gypsy, and Homosexual along the way. Ah Humanity! If you think that disease is an apolitical issue you might ask why this aside. For me, politics has to do with ethics and morality. There is no escaping the fact that reproductive rights, stem cell research and universal health care have a political valence.
Getting back to irony and eye surgeries. The personal epiphany I’ve experienced since the diagnosis has given me a psychological insight no clarity of physical vision could ever provide. In the words of Lear, "I stumbled when I saw.” While the goal of therapy is to induce self-enlightenment through personal examination, there is nothing to compare to a glimpse of one’s own mortality as a means of gaining spiritual insight. There is no avoiding asking yourself who you really are.
By the way, I'm ecstatic! The doctor called and said my bone marrow biopsy was negative.
July 15, 2007
Dusk
“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
-- Susan Sontag
7/14/07
Upon getting the initial news that the MRI had picked up some worrisome enlarged lymph nodes, and that I was scheduled to see a cancer specialist the four days hence, I went into panic mode. I grabbed a hand held tape recorder, leashed up the dog and cried my way through those same woods that inspired Charlie Baxter’s novel The Feast of Love. At this first appointment I was given an optimistic assessment in which the worst case scenario was a low-grade lymphoma, which would require either watchful waiting or a minimally invasive (1 week) radiation treatment. Of course I would also need a CAT scan guided biopsy to check the lymph nodes for the possibility of malignancy. Hearing this and thinking my blubbering was an over-reaction, I confidently erased that first day’s cassette and forgot about it. One week later, having learned that the worst case would have been a blessing, I went to transcribe and a lonely hiss ensued.
A bit of advice I’ve heard repeatedly is to keep a journal. O.K. So now I’m sitting here stuck. Funny how those brilliant ideas on what to write disappear when one actually sits down to do it. One of four questions cancer patients are encouraged to ask themselves is: “Why do you need this illness.” Hmmmm. Well… thinking myself a sophisticated high brow, what other condition would ever compel me to read a book by Lance Armstrong? Or, perhaps subconsciously I’ve always wanted to wear an Elvis wig. Or, It’s given me a chance to experiment with taking pain medication non-recreationally. Perhaps I’ve craved the opportunity to see how good my health benefits are. You want serious? It’s a chance for me show I can deal with adversity gracefully. See you later.
7/15/07
“January 18,1922. A moment of thought: Resign yourself, learn to rest content in the moment. Yes, in the moment, the terrible moment. It is not terrible, only your fear of the future makes it so.”
-- Franz Kafka
They say to “stay in the moment”: but what if it’s a moment of fear or dread? What then? Abandon the moment? Flee to the imagination? Trade uncertainty for despondency? “Oh heavy lightness!”
It’s a beautiful morning: 70 degrees, sun drenched sky, lazy clouds, coffee, iced cinnamon buns, the buzz of the cicada. Spending 60 days in solitary in a late 19th century jail gave me an appreciation for mornings. The one escape from the terrors of life is sleep: “Sleep that knits up the raveled sleeve of care/the balm of hurt minds.” Morning follows the nourishment of unconsciousness. Morning meant one more day of my sentence behind me, a time to mark the endless calendars counting the days until my release. Then, as now, the optimism of the new day confirmed my conviction that the present is good in itself; a beauty enhanced by its disconnect with past and future. These days are like the time between my sentence and confinement then. I knew I was about to learn the pain of isolation, of loneliness, of the feeling that the world was passing me by. This analogy, albeit a loose one, seems appropriate for the journey I’m about to embark on. Even though I’ve no pain yet--excepting the unrelenting, dull, low grade, ache of the symptoms I sought relief from—I’ve had an epiphany of sorts. Having my wits about me, and an imagination undistracted by the trials of the moment has allowed me to focus clearly on what it means to confront my own mortality; to concretize the all too human abstraction that death is always something that happens to someone else. It also provides a rational foundation for bloggings to come that will undoubtedly have an emotional charge that can only be understood by these early notes and asides. Or, maybe I’m indulging in a histrionic psychodrama that is sorely in need of some severe de-mythologizing. Oh well. I’ll keep you posted.
-- Susan Sontag
7/14/07
Upon getting the initial news that the MRI had picked up some worrisome enlarged lymph nodes, and that I was scheduled to see a cancer specialist the four days hence, I went into panic mode. I grabbed a hand held tape recorder, leashed up the dog and cried my way through those same woods that inspired Charlie Baxter’s novel The Feast of Love. At this first appointment I was given an optimistic assessment in which the worst case scenario was a low-grade lymphoma, which would require either watchful waiting or a minimally invasive (1 week) radiation treatment. Of course I would also need a CAT scan guided biopsy to check the lymph nodes for the possibility of malignancy. Hearing this and thinking my blubbering was an over-reaction, I confidently erased that first day’s cassette and forgot about it. One week later, having learned that the worst case would have been a blessing, I went to transcribe and a lonely hiss ensued.
A bit of advice I’ve heard repeatedly is to keep a journal. O.K. So now I’m sitting here stuck. Funny how those brilliant ideas on what to write disappear when one actually sits down to do it. One of four questions cancer patients are encouraged to ask themselves is: “Why do you need this illness.” Hmmmm. Well… thinking myself a sophisticated high brow, what other condition would ever compel me to read a book by Lance Armstrong? Or, perhaps subconsciously I’ve always wanted to wear an Elvis wig. Or, It’s given me a chance to experiment with taking pain medication non-recreationally. Perhaps I’ve craved the opportunity to see how good my health benefits are. You want serious? It’s a chance for me show I can deal with adversity gracefully. See you later.
7/15/07
“January 18,1922. A moment of thought: Resign yourself, learn to rest content in the moment. Yes, in the moment, the terrible moment. It is not terrible, only your fear of the future makes it so.”
-- Franz Kafka
They say to “stay in the moment”: but what if it’s a moment of fear or dread? What then? Abandon the moment? Flee to the imagination? Trade uncertainty for despondency? “Oh heavy lightness!”
It’s a beautiful morning: 70 degrees, sun drenched sky, lazy clouds, coffee, iced cinnamon buns, the buzz of the cicada. Spending 60 days in solitary in a late 19th century jail gave me an appreciation for mornings. The one escape from the terrors of life is sleep: “Sleep that knits up the raveled sleeve of care/the balm of hurt minds.” Morning follows the nourishment of unconsciousness. Morning meant one more day of my sentence behind me, a time to mark the endless calendars counting the days until my release. Then, as now, the optimism of the new day confirmed my conviction that the present is good in itself; a beauty enhanced by its disconnect with past and future. These days are like the time between my sentence and confinement then. I knew I was about to learn the pain of isolation, of loneliness, of the feeling that the world was passing me by. This analogy, albeit a loose one, seems appropriate for the journey I’m about to embark on. Even though I’ve no pain yet--excepting the unrelenting, dull, low grade, ache of the symptoms I sought relief from—I’ve had an epiphany of sorts. Having my wits about me, and an imagination undistracted by the trials of the moment has allowed me to focus clearly on what it means to confront my own mortality; to concretize the all too human abstraction that death is always something that happens to someone else. It also provides a rational foundation for bloggings to come that will undoubtedly have an emotional charge that can only be understood by these early notes and asides. Or, maybe I’m indulging in a histrionic psychodrama that is sorely in need of some severe de-mythologizing. Oh well. I’ll keep you posted.
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