Hi friends and fans of Curtiss. This blog will update you on Curtiss' condition following his surgery tomorrow, May 18, at 11:20 at Brigham and Women's Hospital.
Curtiss is calm and in a good mood, which is much better than I would be in this situation. He just made lobster for dinner. We don't know when he will be able to eat lobster again. Or even when he will eat again, since following the surgery he will be fed through a tube.
Much courage is called for now, as well as good wishes and healing thoughts. I am focusing on the thought that Curtiss will be cured of cancer. These doctors are great and they will take good care of him.
I will post tomorrow night.
Sunday, May 17, 2009
Sunday, April 19, 2009
Weight Watchers again
I joined Weight Watchers for the second time in 6 years.
Last time, I lost 10 pounds and then got stuck and could not lose any more. So I quit. I hated it because I could not stay within my points guidelines and it made me feel like a failure. I was hungry all the time.
But this March, after watching the video of my concert at Berklee and being horrified by how fat and old I looked, I decided it was time. I re-joined March 2. This time, although i am allowed fewer daily points, they have something called Weekly Points Allowance which gives you 35 extra points to play with so you don't feel deprived and can still lose weight. It's working. I have lost 10 lbs. again in 6 weeks. I need to lose about 25 more. Not sure I can do this. But I have to control SOMETHING about my life. I was eating for comfort ever since C. was diagnosed. WW is teaching me how to eat healthily. Truthfully, I had lost my taste for food, but I was still shovelling it in. Now I enjoy eating more. I've become a vegetarian (except for fish and seafood because I need a source of lean protein besides tofu) Reading The Omnivore's Dilemma by Michael Pollan did it for me. I can no longer support the meat and poultry industry in this country--animals are tortured and made to live in abominable conditions.
So...losing weight, becoming an addicted denizen of the WW message boards.
Also meditating again for the first time in over 10 years. It calms and comforts me. I read a chapter of Pema Chodron or Chogyam Trongpa before my sitting practice. They explain how to be a warrior (one who is brave--not one who kills people)
I have been a warrior all my life according to their description, but I could be a better one. More practiced. More dignified.
Less afraid to face things. I will never get it all together, but I will be precise, experience joy and the genuine heart of sadness.
Everything is manangeable, workable, they say. Even cancer. I come up against the wall of my fear and guilt about not supporting C. enough and losing patience with him. I am compassionate with myself, over and over. But I am still afraid. Of the future, with a bad economy and not enough money, with debts I have to pay. With a boyfriend who will be sick for a very long time. I often feel I cannot bear it, but escape is not an option.
"The Wisdom of No Escape," a remarkable book by Pema. I have read it several times. She brings Buddhism down to a mundane, everyday level. It is comforting to know that she does not have it all together after many, many years as both a Buddhist nun and director of Gampo Abbey in Nova Scotia. Trongpa's book, The Sacred Path of the Warrior, is a little more arcane and abstract. Still, it's unquestionably full of truth. The Dharma speaks to me much more than Judeo-Christian theology. More later, it's too late at night to write any more...
Last time, I lost 10 pounds and then got stuck and could not lose any more. So I quit. I hated it because I could not stay within my points guidelines and it made me feel like a failure. I was hungry all the time.
But this March, after watching the video of my concert at Berklee and being horrified by how fat and old I looked, I decided it was time. I re-joined March 2. This time, although i am allowed fewer daily points, they have something called Weekly Points Allowance which gives you 35 extra points to play with so you don't feel deprived and can still lose weight. It's working. I have lost 10 lbs. again in 6 weeks. I need to lose about 25 more. Not sure I can do this. But I have to control SOMETHING about my life. I was eating for comfort ever since C. was diagnosed. WW is teaching me how to eat healthily. Truthfully, I had lost my taste for food, but I was still shovelling it in. Now I enjoy eating more. I've become a vegetarian (except for fish and seafood because I need a source of lean protein besides tofu) Reading The Omnivore's Dilemma by Michael Pollan did it for me. I can no longer support the meat and poultry industry in this country--animals are tortured and made to live in abominable conditions.
So...losing weight, becoming an addicted denizen of the WW message boards.
Also meditating again for the first time in over 10 years. It calms and comforts me. I read a chapter of Pema Chodron or Chogyam Trongpa before my sitting practice. They explain how to be a warrior (one who is brave--not one who kills people)
I have been a warrior all my life according to their description, but I could be a better one. More practiced. More dignified.
Less afraid to face things. I will never get it all together, but I will be precise, experience joy and the genuine heart of sadness.
Everything is manangeable, workable, they say. Even cancer. I come up against the wall of my fear and guilt about not supporting C. enough and losing patience with him. I am compassionate with myself, over and over. But I am still afraid. Of the future, with a bad economy and not enough money, with debts I have to pay. With a boyfriend who will be sick for a very long time. I often feel I cannot bear it, but escape is not an option.
"The Wisdom of No Escape," a remarkable book by Pema. I have read it several times. She brings Buddhism down to a mundane, everyday level. It is comforting to know that she does not have it all together after many, many years as both a Buddhist nun and director of Gampo Abbey in Nova Scotia. Trongpa's book, The Sacred Path of the Warrior, is a little more arcane and abstract. Still, it's unquestionably full of truth. The Dharma speaks to me much more than Judeo-Christian theology. More later, it's too late at night to write any more...
Staring into the abyss?
I might be.
Or, more accurately, we might be, Curtiss and I.
C. has had more pain (significantly) in the past few days. He feels it in the esophagus and when he swallows.
This should not be happening. I thought that the radiation shrank the tumor. How could it have grown? If, in fact, it did grow?
We are waiting for the results of the PET scan. I am feeling a sense of dread.
I don't know if I can endure this much longer.
There is no end in sight.
Tonight, when I played at the Island Merchant in Hyannis with Bart Weisman, I ran into 80 year old Sal at the bar, who says he had stage 3 colon cancer back in 1980, refused to have chemo, and is miraculously still with us.
I also found out that Bart's brother, who had a bone marrow transplant 2 yrs ago and was doing well, is no longer doing well and may only have months to live.
Cancer is a vicious, capricious fiend.
Or, more accurately, we might be, Curtiss and I.
C. has had more pain (significantly) in the past few days. He feels it in the esophagus and when he swallows.
This should not be happening. I thought that the radiation shrank the tumor. How could it have grown? If, in fact, it did grow?
We are waiting for the results of the PET scan. I am feeling a sense of dread.
I don't know if I can endure this much longer.
There is no end in sight.
Tonight, when I played at the Island Merchant in Hyannis with Bart Weisman, I ran into 80 year old Sal at the bar, who says he had stage 3 colon cancer back in 1980, refused to have chemo, and is miraculously still with us.
I also found out that Bart's brother, who had a bone marrow transplant 2 yrs ago and was doing well, is no longer doing well and may only have months to live.
Cancer is a vicious, capricious fiend.
Wednesday, March 18, 2009
Not a good day
I had a bad day today in the sense that even after I meditated and went for a walk, I still felt the weight of cancer upon me. C. is better at distracting himself, watching episodes of The Wire over and over. I realized that it is Spring Break and I am not having enough fun. Tonight I went to see The Watchmen with my son. (C. was asleep-I will see it again with him) As I sat in the waiting room for radiation, I realized I just didn't want to be there. I don't always feel this way, but today, for some reason, I kept starting to cry and trying not to, until I locked myself in the rest room at Brigham and Women's Hospital and gave vent for a few minutes. Crying is like throwing up--there is a certain point past which you can't stop it. But having to return to the public stopped it for me. C. and I met with the radiation oncologist and I realized that I hadn't had any feedback about C. from a doctor. C. likes this doc a lot, and I liked him too--he was very engaged with us, and upbeat. He said things were going just as they should. This should have cheered me up, and it did for a while, but sadness lingered the rest of the day. I have a cold that will not quit, and I was exhausted mid-afternoon, took a nap, and then went to the movie. You'd think I was the one with cancer.
I was actually better at bearing up under my own cancer, probably because it was early stage and is considered 96% cured, or however they express it. Maybe tomorrow will be better. The guy from Novartis and his cameraman are coming to film me for the study. I hope I don't have to watch the film afterwards--it's hard to see myself looking 10 lbs heavier and saggy and middle-aged. I'm entirely too vain to face the reality of my deteriorating looks. I have to somehow make the shift to focussing more on my interior than my exterior.
I was actually better at bearing up under my own cancer, probably because it was early stage and is considered 96% cured, or however they express it. Maybe tomorrow will be better. The guy from Novartis and his cameraman are coming to film me for the study. I hope I don't have to watch the film afterwards--it's hard to see myself looking 10 lbs heavier and saggy and middle-aged. I'm entirely too vain to face the reality of my deteriorating looks. I have to somehow make the shift to focussing more on my interior than my exterior.
Thursday, February 26, 2009
Another cup of depresso
One of my gigs next week got cancelled. This is the second time they have fucked us over (The Fireplace in Brookline, a mediocre restaurant whose manager acts like he is doing your band a big favor to book them, and then screws it up) I have the email from him in December offering me March 4, which I accepted. So the other band they booked for that date was obviously booked after us, but rather than do the right thing by bumping them off the schedule, they are bumping us.
I hate the music biz.
Sometimes I even hate being a musician.
Berklee just promoted me to Associate Professor, with all of the glory that entails, and none of the money. The letter informs me that my hourly rate will go up $2.50 (!!!!!!!) in addition to any other increase that the union might get out of these bastards. $2.50 more an hour for all that work I did for a year, writing a book and putting their stupid dossier together.
All they care about at Berklee is if you are famous. That's IT. I will most likely never be famous. I'm 56, and if I ever had a moment, it's past.
I suppose I should be happy for the promotion, but I'm not.
My boyfriend has cancer.
I'm broke, and my bills seem to be increasing all the time.
I'm fat and tired all the time.
I had to increase my meds...
It sucks to be me.
I hate the music biz.
Sometimes I even hate being a musician.
Berklee just promoted me to Associate Professor, with all of the glory that entails, and none of the money. The letter informs me that my hourly rate will go up $2.50 (!!!!!!!) in addition to any other increase that the union might get out of these bastards. $2.50 more an hour for all that work I did for a year, writing a book and putting their stupid dossier together.
All they care about at Berklee is if you are famous. That's IT. I will most likely never be famous. I'm 56, and if I ever had a moment, it's past.
I suppose I should be happy for the promotion, but I'm not.
My boyfriend has cancer.
I'm broke, and my bills seem to be increasing all the time.
I'm fat and tired all the time.
I had to increase my meds...
It sucks to be me.
Friday, February 20, 2009
Birthday come and gone
Well, it's over. I don't have to obsess about being old for another year (though I will)
Saw the dentist today, got a new set of 20 X rays, and a pronouncement from the dentist that "everything is perfect." At my age, it's considered great if you still have all your teeth. The brushing and flossing are paying off, though they are tedious.
Curtiss is doing well--wiped out for a while by the chemo, but bounces back. He has had about 10 radiation sessions and 2 chemo sessions. I think next week he doesn't get chemo. He is in good spirits and jokes frequently, though it breaks his heart (as he puts it) that I have bad dreams every night. I have had nightmares ever since I was a kid, many of them of the apocalyptic type, or else the type of anxiety dream in which trains are speeding toward me from every direction and I cannot escape. I don't have the train nightmares anymore, though I had them for years. Since 9/11, I have had many nightmares with the theme of immanent death in the form of a plane crashing into a building I am in, or I am in a plane about to crash, or I am scanning the sky and spot a plane about to drop a bomb with the knowledge that we will all be dead in minutes. The garden-variety nightmares are frequent also: gigs gone horribly awry, being caught naked in public, not having finished high school with the gym requirement still to be completed (or a math class)Such is the subconscious life of a person who would otherwise be paralyzed by waking anxiety. I guess I'm grateful for the nightmares. Therapeutic.
I had a depressed day today. Some days, I am relatively cheerful. I'm not sure it has too much to do with objective facts or experience. Today I was beset by resentment for other faculty who appear to be teaching courses they actually like, as opposed to the terminally boring Basic Keyboard 1 and 2, Music Ed 1, and Reading and Comping Labs. Or I would wish that my job involved helping to rehabilitate people or otherwise improve their lives, so I could really be helping humanity, instead of teaching college students to play rudimentary piano. But then I realized that I would probably still be unhappy with whatever job I had because my real desire is to be a woman of leisure. I'm tired of going to work day in, day out. It's killing my desire to play music, too. I can't focus on practicing, though I have to because I have gigs coming up. I wish KeysFest were over already. I feel this way every year before my annual concert. I'm afraid I might burst into tears at the BPC All Faculty Concert when I play my tribute tunes for Dave McKenna. I've been very emotional lately. But with any luck, I will have some equanimity by March 1 (week after next) If not, I'll just have to get through it.
Saw the dentist today, got a new set of 20 X rays, and a pronouncement from the dentist that "everything is perfect." At my age, it's considered great if you still have all your teeth. The brushing and flossing are paying off, though they are tedious.
Curtiss is doing well--wiped out for a while by the chemo, but bounces back. He has had about 10 radiation sessions and 2 chemo sessions. I think next week he doesn't get chemo. He is in good spirits and jokes frequently, though it breaks his heart (as he puts it) that I have bad dreams every night. I have had nightmares ever since I was a kid, many of them of the apocalyptic type, or else the type of anxiety dream in which trains are speeding toward me from every direction and I cannot escape. I don't have the train nightmares anymore, though I had them for years. Since 9/11, I have had many nightmares with the theme of immanent death in the form of a plane crashing into a building I am in, or I am in a plane about to crash, or I am scanning the sky and spot a plane about to drop a bomb with the knowledge that we will all be dead in minutes. The garden-variety nightmares are frequent also: gigs gone horribly awry, being caught naked in public, not having finished high school with the gym requirement still to be completed (or a math class)Such is the subconscious life of a person who would otherwise be paralyzed by waking anxiety. I guess I'm grateful for the nightmares. Therapeutic.
I had a depressed day today. Some days, I am relatively cheerful. I'm not sure it has too much to do with objective facts or experience. Today I was beset by resentment for other faculty who appear to be teaching courses they actually like, as opposed to the terminally boring Basic Keyboard 1 and 2, Music Ed 1, and Reading and Comping Labs. Or I would wish that my job involved helping to rehabilitate people or otherwise improve their lives, so I could really be helping humanity, instead of teaching college students to play rudimentary piano. But then I realized that I would probably still be unhappy with whatever job I had because my real desire is to be a woman of leisure. I'm tired of going to work day in, day out. It's killing my desire to play music, too. I can't focus on practicing, though I have to because I have gigs coming up. I wish KeysFest were over already. I feel this way every year before my annual concert. I'm afraid I might burst into tears at the BPC All Faculty Concert when I play my tribute tunes for Dave McKenna. I've been very emotional lately. But with any luck, I will have some equanimity by March 1 (week after next) If not, I'll just have to get through it.
Thursday, February 12, 2009
My birthday is coming
In a few days I will be 56 years old.
My mother's birthday, Feb. 14, was not only Valentine's Day but also a day before mine.
She lived to be only a few years older than I am now.
She died from a glioma, a still-deadly brain tumor, in 1985, not yet 60 years old.
After living a healthy life of moderate habits, organic food and gardening, she developed cancer: a woman who should have seen old age. Not a perfect mother, but she did the best she knew how. She wanted me to be happy, and my constant depression must have been heartbreaking for her. She wanted me to be thin, well-dressed in a preppy way, with my hair in a "style." I despaired of achieving thinness, wore fishnet stockings, granny gowns and glasses, miniskirts and ripped bell bottom jeans, and rejected style in favor of long 60s hair. She was beloved by a dozen friends who vied for the honor of being her best friend (she never had a best friend, to my knowledge.) I was not social and had 3 friends. She desperately tried to get me to date, join clubs, and go to summer camp. I did not date in high school, joined only the clubs I
liked (drama, literary mag, folk music) and hated summer camp, though I obediently went to camp because I thought I had no choice in the matter.
She was good at everything and envied for this: her sense of style in decorating and collecting antiques; her genius at herb, flower and vegetable gardening; her skill in cooking, drawing, painting, calligraphy, ceramics, and jewelry making; her intellectual and left wing political credentials (she loved Colette, Proust, Trollope, and Dickens, classical music and jazz, and hated Nixon with the fire of a thousand suns.) I resemble her in more ways than I am willing to admit. She taught me to love antiques, roses, peonies, water color and pen and ink drawings, Chinese painting, Japanese gardens, calligraphy, Little Women, Anne of Green Gables, Beatrix Potter, Barbara Pym, Italy and Italian food, and a million other things I will love for the rest of my life. She was very much like Martha Stewart more than 20 years before Martha rose to fame. She had wonderful taste and was incredibly competent. I resented her for it and rebelled against her, but now I embrace it. I will never be as beloved and envied as she was, but I can live with that.
I was angry with her for giving up on fighting her cancer. She submitted to it calmly and peacefully. She meditated and focused on the positive rather than the negative. She was never angry at her cancer as I was. I tried to fight for her, but that never works. The difference between her and me is that I was born a fighter and will never give up. I fought my cancer (admittedly not terminal) every moment. Although, like her, I am an Aquarian, with largeness of vision and spirit, futuristic wisdom, and the desire to be free, unlike her, I also have Scorpio rising (tenacity in the face of adversity) and Mars in my fourth house (stubbornness and aggression--not always a good thing, but good for fighting cancer. Some people sneer at astrology, but it is true. All true.
Mom had two brain surgeries (the tumor grew back, as these tumors always do) and more than one course of chemo and radiation during the 9 months she lived following her diagnosis. She was bloated from the steroids she had to take for brain swelling. She was bald from chemo and wore a bad wig. She had trouble walking because of balance problems and back trouble (the tumor was in the cerebellum) But I remember her smiling broadly and saying she was so happy it was a beautiful day. We sat together in her sunny garden and she was content to be dying. I believe that she really believed the Buddhist adage that as soon as we are born, we begin to die. And that some of us are merely called to die before others. She would say,"There's nothing wrong with me. It's just a part of me that is sick." But she was dying. I was angry at God for letting her die.
24 years have passed since she died. She'd be 83 now if she'd lived. My father still lives at 84 after an unhealthy life: little exercise, a lot of drinking (daily martinis, still) smoking (a pack of Pall Malls a day for years) and cholesterol consumption (he had an angioplasty but unlike my 53 year old brother, he didn't need a stent.) He has two forms of cancer, neither of which has threatened his health this far. Early-stage bladder cancer which merely requires a yearly check (has not grown) and a form of leukemia (CLL) which was discovered by accident in a blood test 20 years ago and which may well remain inactive the rest of his life. His doctors say he will most likely succumb to another disease. He sees a hematologist yearly. His only other complaints are a sore neck (disk problem?) and a runny, watery eye caused by a faulty tear duct. I can't figure it all out. Maybe someday all this will be understood.
I do miss my mother. She was an outstanding person. She didn't love me for who I was, but for who she hoped I would become. I know I fell short of her expectations, and I internalized her criticisms. Years of therapy with a shrewd analyst have shown me the truths about her and about me. I finally allowed myself to express anger and hatred for her. I was finally able to love her once I had forgiven her.
This post has been more about her than about me. I'm not sure what to say about growing old. It's not for sissies, as Bette Davis said, but it is better than the alternative (not sure who said that) No one knows how much time is left. Curtiss joked about being hit by a bus today after commenting on the discouraging 5 yr. survival stats for stomach cancer. I believe that he is not typical (younger, without other serious diseases weakening his immune system)that his youth and strength will help him fight the disease and win. I have to believe this, but at this point, it is not so hard to believe. He had his first chemo treatment yesterday and has thus far suffered no side effects. He feels positive about the treatment. I am relieved that it has begun, because even though I was not spoiling for a fight, now that the gauntlet has been flung, I am rising to the challenge. It is only my fight insofar as I love him and I am his life partner, but it still means I have to fight the battle with him. Life has a way of thrusting you into battle when you are least prepared.
Before the diagnosis, I was planning to go into the recording studio with a different band; I was going to look for more gigs despite the bad economy; I was going to find more ways of making money if I am not promoted. It was all about me. Now it's not.
The future is uncertain, even scary.
My self-image is suffering. I'm still 30 lbs. overweight, out of shape (because I stopped working out) I'm looking more and more matronly--certainly not "hot" anymore, though Curtiss and Jim think so. I know I am invisible to most men and that I am not turning any heads when I walk by. It's hard to get used to this. I used to take some pride in my appearance, although I always thought I was too fat even when I wasn't, and always wished I had better hair and a better nose and teeth. It's always something. I was raised to be hypercritical of my appearance. Also of my achievements. I never had the music education I wanted. I never developed a killer piano technique. I can't afford to have the action on my piano made lighter (it needs to be) I can't focus enough to compose music. All of my gigs involve playing music I am no longer interested in. And I am not sure if I still want to play free music all the time. Maybe I want to play in a rock band. Um, hello, I'm 56 years old come Sunday. A little old to be making a fool out of myself. I can just hear Dr. Wagner, my therapist, saying, "Why are you so mean to yourself?"
A brilliant woman. Maybe I should listen to her.
My mother's birthday, Feb. 14, was not only Valentine's Day but also a day before mine.
She lived to be only a few years older than I am now.
She died from a glioma, a still-deadly brain tumor, in 1985, not yet 60 years old.
After living a healthy life of moderate habits, organic food and gardening, she developed cancer: a woman who should have seen old age. Not a perfect mother, but she did the best she knew how. She wanted me to be happy, and my constant depression must have been heartbreaking for her. She wanted me to be thin, well-dressed in a preppy way, with my hair in a "style." I despaired of achieving thinness, wore fishnet stockings, granny gowns and glasses, miniskirts and ripped bell bottom jeans, and rejected style in favor of long 60s hair. She was beloved by a dozen friends who vied for the honor of being her best friend (she never had a best friend, to my knowledge.) I was not social and had 3 friends. She desperately tried to get me to date, join clubs, and go to summer camp. I did not date in high school, joined only the clubs I
liked (drama, literary mag, folk music) and hated summer camp, though I obediently went to camp because I thought I had no choice in the matter.
She was good at everything and envied for this: her sense of style in decorating and collecting antiques; her genius at herb, flower and vegetable gardening; her skill in cooking, drawing, painting, calligraphy, ceramics, and jewelry making; her intellectual and left wing political credentials (she loved Colette, Proust, Trollope, and Dickens, classical music and jazz, and hated Nixon with the fire of a thousand suns.) I resemble her in more ways than I am willing to admit. She taught me to love antiques, roses, peonies, water color and pen and ink drawings, Chinese painting, Japanese gardens, calligraphy, Little Women, Anne of Green Gables, Beatrix Potter, Barbara Pym, Italy and Italian food, and a million other things I will love for the rest of my life. She was very much like Martha Stewart more than 20 years before Martha rose to fame. She had wonderful taste and was incredibly competent. I resented her for it and rebelled against her, but now I embrace it. I will never be as beloved and envied as she was, but I can live with that.
I was angry with her for giving up on fighting her cancer. She submitted to it calmly and peacefully. She meditated and focused on the positive rather than the negative. She was never angry at her cancer as I was. I tried to fight for her, but that never works. The difference between her and me is that I was born a fighter and will never give up. I fought my cancer (admittedly not terminal) every moment. Although, like her, I am an Aquarian, with largeness of vision and spirit, futuristic wisdom, and the desire to be free, unlike her, I also have Scorpio rising (tenacity in the face of adversity) and Mars in my fourth house (stubbornness and aggression--not always a good thing, but good for fighting cancer. Some people sneer at astrology, but it is true. All true.
Mom had two brain surgeries (the tumor grew back, as these tumors always do) and more than one course of chemo and radiation during the 9 months she lived following her diagnosis. She was bloated from the steroids she had to take for brain swelling. She was bald from chemo and wore a bad wig. She had trouble walking because of balance problems and back trouble (the tumor was in the cerebellum) But I remember her smiling broadly and saying she was so happy it was a beautiful day. We sat together in her sunny garden and she was content to be dying. I believe that she really believed the Buddhist adage that as soon as we are born, we begin to die. And that some of us are merely called to die before others. She would say,"There's nothing wrong with me. It's just a part of me that is sick." But she was dying. I was angry at God for letting her die.
24 years have passed since she died. She'd be 83 now if she'd lived. My father still lives at 84 after an unhealthy life: little exercise, a lot of drinking (daily martinis, still) smoking (a pack of Pall Malls a day for years) and cholesterol consumption (he had an angioplasty but unlike my 53 year old brother, he didn't need a stent.) He has two forms of cancer, neither of which has threatened his health this far. Early-stage bladder cancer which merely requires a yearly check (has not grown) and a form of leukemia (CLL) which was discovered by accident in a blood test 20 years ago and which may well remain inactive the rest of his life. His doctors say he will most likely succumb to another disease. He sees a hematologist yearly. His only other complaints are a sore neck (disk problem?) and a runny, watery eye caused by a faulty tear duct. I can't figure it all out. Maybe someday all this will be understood.
I do miss my mother. She was an outstanding person. She didn't love me for who I was, but for who she hoped I would become. I know I fell short of her expectations, and I internalized her criticisms. Years of therapy with a shrewd analyst have shown me the truths about her and about me. I finally allowed myself to express anger and hatred for her. I was finally able to love her once I had forgiven her.
This post has been more about her than about me. I'm not sure what to say about growing old. It's not for sissies, as Bette Davis said, but it is better than the alternative (not sure who said that) No one knows how much time is left. Curtiss joked about being hit by a bus today after commenting on the discouraging 5 yr. survival stats for stomach cancer. I believe that he is not typical (younger, without other serious diseases weakening his immune system)that his youth and strength will help him fight the disease and win. I have to believe this, but at this point, it is not so hard to believe. He had his first chemo treatment yesterday and has thus far suffered no side effects. He feels positive about the treatment. I am relieved that it has begun, because even though I was not spoiling for a fight, now that the gauntlet has been flung, I am rising to the challenge. It is only my fight insofar as I love him and I am his life partner, but it still means I have to fight the battle with him. Life has a way of thrusting you into battle when you are least prepared.
Before the diagnosis, I was planning to go into the recording studio with a different band; I was going to look for more gigs despite the bad economy; I was going to find more ways of making money if I am not promoted. It was all about me. Now it's not.
The future is uncertain, even scary.
My self-image is suffering. I'm still 30 lbs. overweight, out of shape (because I stopped working out) I'm looking more and more matronly--certainly not "hot" anymore, though Curtiss and Jim think so. I know I am invisible to most men and that I am not turning any heads when I walk by. It's hard to get used to this. I used to take some pride in my appearance, although I always thought I was too fat even when I wasn't, and always wished I had better hair and a better nose and teeth. It's always something. I was raised to be hypercritical of my appearance. Also of my achievements. I never had the music education I wanted. I never developed a killer piano technique. I can't afford to have the action on my piano made lighter (it needs to be) I can't focus enough to compose music. All of my gigs involve playing music I am no longer interested in. And I am not sure if I still want to play free music all the time. Maybe I want to play in a rock band. Um, hello, I'm 56 years old come Sunday. A little old to be making a fool out of myself. I can just hear Dr. Wagner, my therapist, saying, "Why are you so mean to yourself?"
A brilliant woman. Maybe I should listen to her.
Sunday, February 8, 2009
Update
The eye: Better thanks to a Clockwork Orange-like procedure in which my left eyelids were held open for 4 min. while an electrode delivered steroid to my eyeball. Not pleasant but at least they didn't make me watch any violent films. I am now in a new study for this procedure and must check in once a week for a month. Supposed to get paid for this, too.
BF: His cancer treatment (chemo and rads) is supposed to start this Wed. but due to the fact that the app't is late in the day (3:15) and they have to draw blood and do other workups, he may not actually get the treatment until NEXT week. I am so fed up with the glacial pace of all this. We're talking CANCER here, folks--couldn't you just hurry it up a bit?
At least we now know that it has not spread to the liver (not stage 4) but the oncologist says it's stage 3A (not sure how he knows this. Obviously not as good as 1 or 2.
BF: His cancer treatment (chemo and rads) is supposed to start this Wed. but due to the fact that the app't is late in the day (3:15) and they have to draw blood and do other workups, he may not actually get the treatment until NEXT week. I am so fed up with the glacial pace of all this. We're talking CANCER here, folks--couldn't you just hurry it up a bit?
At least we now know that it has not spread to the liver (not stage 4) but the oncologist says it's stage 3A (not sure how he knows this. Obviously not as good as 1 or 2.
Saturday, January 31, 2009
More on the eye
I didn't let the eye ruin what remained of our evening with New York friends Peter and Lisa who drove here yesterday. Peter and I had an improv session on drums and piano. Curtiss recorded it and a lot of it was cool. Then we had barbecue for dinner and they went back to their hotel. Curtiss was very tired and said he was too tired to be scared.
(Which indicates to me that he WAS scared)I did Reiki on his heels and he fell asleep.
Jim is on the phone, so I'm going now...
(Which indicates to me that he WAS scared)I did Reiki on his heels and he fell asleep.
Jim is on the phone, so I'm going now...
The eye problem
Today I woke up with iritis (also known as anterior uveitis) a chronic problem I've had for 8 years in my left eye. It has been kept at bay for about 8 months now by a study drug made by Novartis. I'm a test subject. The drug seemed to be working because I have never gone this long without a flareup. The stress I've been under lately is a likely culprit--my doctor agrees. There was only one month left of the study to go.
My doctor met me at the clinic today along with one of his fellows and the study coordinator. They examined me, and he determined that I was a perfect candidate for another study which would knock out my uveitis in one blow. This is an electrode-driven dose of steroid directly into the eye using an eyecup-like device which one doc holds against my eyeball (don't worry, it was numbed first) The other doc controls the electric current. There is an electrode patch on my brow which stings as the current is administered. My eyeball stings from the medicine (or possibly both medicine and current) and it is not pleasant holding my eye open for 4 minutes. I say to myself over and over, It's not cancer, it's not cancer, I can take anything for 4 minutes, it will be over soon, it'll be worth it because I won't have to put a drop in my eye every hour for a week and then taper off for 5 more weeks. I thought about what my boyfriend has to endure and told myself to suck it up. When it was over, the stinging gradually went away, as did most of the eye pain. I had to stay at the clinic for another 3 hours because my blood had to be drawn at regular intervals. We ran into problems with the veins in my arms and had to use the tiny veins on the tops of my hands. I kept wondering how they draw babies' blood fro the teeny tiny veins. They managed to get enough for plasma. The study protocols state that I must return tomorrow for followup.
My doctor met me at the clinic today along with one of his fellows and the study coordinator. They examined me, and he determined that I was a perfect candidate for another study which would knock out my uveitis in one blow. This is an electrode-driven dose of steroid directly into the eye using an eyecup-like device which one doc holds against my eyeball (don't worry, it was numbed first) The other doc controls the electric current. There is an electrode patch on my brow which stings as the current is administered. My eyeball stings from the medicine (or possibly both medicine and current) and it is not pleasant holding my eye open for 4 minutes. I say to myself over and over, It's not cancer, it's not cancer, I can take anything for 4 minutes, it will be over soon, it'll be worth it because I won't have to put a drop in my eye every hour for a week and then taper off for 5 more weeks. I thought about what my boyfriend has to endure and told myself to suck it up. When it was over, the stinging gradually went away, as did most of the eye pain. I had to stay at the clinic for another 3 hours because my blood had to be drawn at regular intervals. We ran into problems with the veins in my arms and had to use the tiny veins on the tops of my hands. I kept wondering how they draw babies' blood fro the teeny tiny veins. They managed to get enough for plasma. The study protocols state that I must return tomorrow for followup.
Wednesday, January 28, 2009
Still waiting
Three weeks after diagnosis, and we're still waiting to find out if the cancer has spread.
We saw the oncologist, Dr. Enzinger, last Friday. A personable, humane sort of doctor, also a big specialist in gastric cancer. He answered all of our questions. Next: an MRI last Sun. morning, the results of which were "inconclusive." Today, Curtiss saw 2 doctors, a surgeon and a radiation oncologist. More tests have been ordered, a PET scan and an ultrasound. One is this Friday--don't know which. We still don't know if it is stage 4 and there will be no surgery, only chemo and radiation to keep it at bay because there is no cure. Or we will get the relatively cheery news that a cure is possible, but only if his entire stomach is removed and he then gets chemo and radiation for 6 months. I naively expected to get this news today. But cancer diagnosis is sneaky, tricky, and impossibly complicated, as it turns out. And it flows at its own glacial pace. Fortunately, Curtiss is OK with this--he says he isn't ready for more information to process at this point. So I must try to be OK with it, though I am not. I am angry that the process doesn't tell us anything and that the PET scan is no more reliable than the MRI in getting the pictures we need (according to the radiation oncologist, with whom Curtiss had a pleasant chat.) These tests are costing a fortune and so far telling us nothing!!!
And we have to wait, and wait, and wait, to find out if Curtiss can be cured or not.
What good is modern medicine if it can't give us clear and timely answers?
My aunt Joan (whose daughter, my cousin Reesa, is a Hodgkins Disease survivor for about 20 years and is considered cured) asked me to promise her to be as upbeat around Curtiss as possible. It's what is expected of caregivers, apparently. Well, I can try, but I might not succeed. I've been taking my rage to my therapist, but I have very little money and can't afford to see her every week. My aunt is relentlessly upbeat and determined (which may well be the reason for her surviving a heart attack which the doctors expected would kill her) It works for her, but it might not work for me. Sure, I get it that C. is the one with cancer and the outlook is infinitely worse for him than for me--it isn't about me. But I am caught in the cancer crossfire, as C.'s partner, as someone who loves him. Am I supposed to be a rock and never crack?
My mother chastised my dad for being sad around her when she was sick. "Don't do that again," she said. Of course, it was Dad and not me, and Dad can be impossibly and impenetrably glum and totally inconsolable. I'm not like that. On the other hand, it is a terrible strain for me to pretend to be cheerful when I am having a bad fifteen minutes, or five minutes. I am able to distract myself. I am even able to be guardedly hopeful. But consistently upbeat is beyond me. I don't think I should be chastised for getting upset. And Curtiss isn't doing that. I think he gets it about me. I want to help him, but I am a lousy caregiver. The best I can do is take care of my own health so at least I am able to give him the support he needs.
We saw the oncologist, Dr. Enzinger, last Friday. A personable, humane sort of doctor, also a big specialist in gastric cancer. He answered all of our questions. Next: an MRI last Sun. morning, the results of which were "inconclusive." Today, Curtiss saw 2 doctors, a surgeon and a radiation oncologist. More tests have been ordered, a PET scan and an ultrasound. One is this Friday--don't know which. We still don't know if it is stage 4 and there will be no surgery, only chemo and radiation to keep it at bay because there is no cure. Or we will get the relatively cheery news that a cure is possible, but only if his entire stomach is removed and he then gets chemo and radiation for 6 months. I naively expected to get this news today. But cancer diagnosis is sneaky, tricky, and impossibly complicated, as it turns out. And it flows at its own glacial pace. Fortunately, Curtiss is OK with this--he says he isn't ready for more information to process at this point. So I must try to be OK with it, though I am not. I am angry that the process doesn't tell us anything and that the PET scan is no more reliable than the MRI in getting the pictures we need (according to the radiation oncologist, with whom Curtiss had a pleasant chat.) These tests are costing a fortune and so far telling us nothing!!!
And we have to wait, and wait, and wait, to find out if Curtiss can be cured or not.
What good is modern medicine if it can't give us clear and timely answers?
My aunt Joan (whose daughter, my cousin Reesa, is a Hodgkins Disease survivor for about 20 years and is considered cured) asked me to promise her to be as upbeat around Curtiss as possible. It's what is expected of caregivers, apparently. Well, I can try, but I might not succeed. I've been taking my rage to my therapist, but I have very little money and can't afford to see her every week. My aunt is relentlessly upbeat and determined (which may well be the reason for her surviving a heart attack which the doctors expected would kill her) It works for her, but it might not work for me. Sure, I get it that C. is the one with cancer and the outlook is infinitely worse for him than for me--it isn't about me. But I am caught in the cancer crossfire, as C.'s partner, as someone who loves him. Am I supposed to be a rock and never crack?
My mother chastised my dad for being sad around her when she was sick. "Don't do that again," she said. Of course, it was Dad and not me, and Dad can be impossibly and impenetrably glum and totally inconsolable. I'm not like that. On the other hand, it is a terrible strain for me to pretend to be cheerful when I am having a bad fifteen minutes, or five minutes. I am able to distract myself. I am even able to be guardedly hopeful. But consistently upbeat is beyond me. I don't think I should be chastised for getting upset. And Curtiss isn't doing that. I think he gets it about me. I want to help him, but I am a lousy caregiver. The best I can do is take care of my own health so at least I am able to give him the support he needs.
Wednesday, January 14, 2009
Waiting
Curtiss and I are waiting until we see the oncologist on Jan. 23.
It may not be an unreasonable amount of time to wait (I have heard that stomach cancer is slow growing) but I can't bear it. I want him in surgery NOW.
I have called my oncologist so that she will call me back and reassure me that it is OK to wait until the 23rd. The info online about staging is confusing and I'm afraid we are making incorrect assumptions.
I feel a high degree of alienation since there appears to be no one from whom I can get info right now. The doctor at Dana Farber does not give out his direct line # to patients until he has seen them. I guess that makes sense. You can't really get a second opinion until you get a first opinion, and it looks like we will just have to wait until Jan. 23. It's almost as hard for me right now as it must be for Curtiss.
I want answers and I want action. I am not good with sitting still and hoping. The best I can do right now is to send positive energy healing to Curtiss and direct it at the tumor.
I wish I had someone to talk to with information of comfort.
It may not be an unreasonable amount of time to wait (I have heard that stomach cancer is slow growing) but I can't bear it. I want him in surgery NOW.
I have called my oncologist so that she will call me back and reassure me that it is OK to wait until the 23rd. The info online about staging is confusing and I'm afraid we are making incorrect assumptions.
I feel a high degree of alienation since there appears to be no one from whom I can get info right now. The doctor at Dana Farber does not give out his direct line # to patients until he has seen them. I guess that makes sense. You can't really get a second opinion until you get a first opinion, and it looks like we will just have to wait until Jan. 23. It's almost as hard for me right now as it must be for Curtiss.
I want answers and I want action. I am not good with sitting still and hoping. The best I can do right now is to send positive energy healing to Curtiss and direct it at the tumor.
I wish I had someone to talk to with information of comfort.
Thursday, January 8, 2009
My boyfriend has cancer
We found out this week that Curtiss has stomach cancer.
We don't know what stage. We know that it is a malignant adenocarcinoma (95% of all stomach cancers are) We don't know how long it has been growing or if it has spread to other organs or lymph nodes. He had a CAT scan yesterday and the doc hasn't read it yet. He has read the pathology report and prescribed pain meds for C. and promised to get an app't with a top gastric surgeon and presumably an oncologist. It has been 4 years since my struggle with breast cancer, which fortunately was discovered at an early and curable stage. Very little early stage stomach cancer is found because it doesn't have symptoms until later. The picture for my lover, companion of past 8 years is grim. But not hopeless. I find it hard to believe that his cancer could have metastacized because he has not lost his appetite, has not lost weight, and has no blood in his stool. He does have pain where the tumor is. We thought it was only an ulcer. Did not expect this diagnosis. It is rare in men his age (45) We only hope and pray that his youth and strength will help him fight this. We haven't told family yet (except my son, who is home from college and has been very supportive.) I need help to cope with this. I am crying a lot but try not to let him see. I have to be brave to help him get well.
We don't know what stage. We know that it is a malignant adenocarcinoma (95% of all stomach cancers are) We don't know how long it has been growing or if it has spread to other organs or lymph nodes. He had a CAT scan yesterday and the doc hasn't read it yet. He has read the pathology report and prescribed pain meds for C. and promised to get an app't with a top gastric surgeon and presumably an oncologist. It has been 4 years since my struggle with breast cancer, which fortunately was discovered at an early and curable stage. Very little early stage stomach cancer is found because it doesn't have symptoms until later. The picture for my lover, companion of past 8 years is grim. But not hopeless. I find it hard to believe that his cancer could have metastacized because he has not lost his appetite, has not lost weight, and has no blood in his stool. He does have pain where the tumor is. We thought it was only an ulcer. Did not expect this diagnosis. It is rare in men his age (45) We only hope and pray that his youth and strength will help him fight this. We haven't told family yet (except my son, who is home from college and has been very supportive.) I need help to cope with this. I am crying a lot but try not to let him see. I have to be brave to help him get well.
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