Monday, March 29, 2010
lucky lucky lucky
while i was lying in bed with a needle in my arm feeling the chemo medicine burning into my shoulders and trying to engage the nurse in pleasant conversation, i kept wishing for one thing.
i just wanted my life back.
i must have found a penny heads-up on the floor somewhere because somehow, suddenly, everything is falling back into place.
crazy, mad busy with work; the amazons happy and obedient; toby coming and going happily between our house and eve's, my muscles responding to the exercise; my eyelashes coming in like a fringe of grass. i'm almost pretty.
hoping that next month, for the first time in ages, all the bills will be paid on time and i'll make a bigger dent in my debt.
perhaps it's time to fall in love again...
oh - and it's SPRING.
i am beginning to believe i am quite possibly the luckiest person on the planet. not sure anyone getting an academy award or winning the lottery ever felt better.
thank you, God, LOVE, my family, my friends, the UNIVERSE.
i'm a human so the wants will probably set in again soon enough, but for now, i am truly grateful.
Sunday, March 28, 2010
two weeks of work and 14 laps
two weeks in a very fast-paced, deadline-packed office and i feel the same as i do in the pool.
i am a tiny piece of string on the surface of the water. no power in my arms and legs. i kick and move my arms but they barely propel me forwards. all of a sudden, everything cramps up in my shoulders and i am convinced i'll be paralyzed and start sinking like a stone but instead, i keep moving, keep working through it, try and concentrate on my legs so they can take some pressure off my arms, thinking about flexing my stomach and hip muscles so i move from my core rather than my upper body. all of a sudden, i've almost done half-a-mile.
but it's not easy.
some days at work i still think i am so exhausted i will not survive another minute, i have got to go home to bed, i cannot do it without caffeine. my whole body hurts, my skull cramps from the cold office air, my feet and ankles throb from walking on pavement and i just keep drinking water and keep going.
in the meantime, the drama from friends and family members keeps spinning around me. i come home and just want to collapse in bed, lie silently in total darkness and listen only to my breathing. but instead, i deal with listen to people's frustration and complaints and think that my body will not survive another onslaught on my psyche. my stomach burns.
and somehow, everything gets done and i live through it.
it's a grueling marathon, this life.
but it's getting better all the time...
i am a tiny piece of string on the surface of the water. no power in my arms and legs. i kick and move my arms but they barely propel me forwards. all of a sudden, everything cramps up in my shoulders and i am convinced i'll be paralyzed and start sinking like a stone but instead, i keep moving, keep working through it, try and concentrate on my legs so they can take some pressure off my arms, thinking about flexing my stomach and hip muscles so i move from my core rather than my upper body. all of a sudden, i've almost done half-a-mile.
but it's not easy.
some days at work i still think i am so exhausted i will not survive another minute, i have got to go home to bed, i cannot do it without caffeine. my whole body hurts, my skull cramps from the cold office air, my feet and ankles throb from walking on pavement and i just keep drinking water and keep going.
in the meantime, the drama from friends and family members keeps spinning around me. i come home and just want to collapse in bed, lie silently in total darkness and listen only to my breathing. but instead, i deal with listen to people's frustration and complaints and think that my body will not survive another onslaught on my psyche. my stomach burns.
and somehow, everything gets done and i live through it.
it's a grueling marathon, this life.
but it's getting better all the time...
Thursday, March 11, 2010
phase three: time to get moving
i feel like i'm wearing jet-shoes and flying through the air.
on monday, i went to see a doctor called sharon lewin up at columbia presbyterian. before we made the appointment, we had a great conversation about how i wanted to handle my care moving forwards. i really wanted a holistic, nontoxic therapy. i took the long subway ride from the bottom of the island of manhattan up to the top, thinking she was going to talk to me about alternative therapies, about diet, exercise and the effects of specific supplements.
after a 3-hour wait in a standard hospital room, she did the usual blood work, the physical, the vitals and then called me into her office. she said, "you look so much better than i thought you would. you really have made a great recovery. all those supplements and everything have really helped."
me: "thank you. i FEEL great."
and then she said, "so how can i convince you to do more chemotherapy?"
me: "um... if someone else does it for me."
sharon: "well, would you consider a hysterectomy?"
me: "but a hysterectomy doesn't guarantee the cancer won't come back."
sharon: "that's true because the cancer could be in your bloodstream already."
me: "so what's the point?"
sharon: "according to the standard protocol, if you had a hysterectomy, you'd be considered 'cured.'"
i finished by explaining to her that i really didn't need any more medical intervention but i appreciated her interest. she promised to get in touch with colleagues at other institutions to see what else might be out there. "the prognosis is good and the future is promising, but are you sure?"
yesterday morning, my doctor from msk called to suggest i see doctors in boston and london. she still wants to give me more drugs herself. what about sharon lewin?, i asked her. "oh, she trained with me," said carol. "you won't hear anything different than what i say."
in the afternoon, i was back up at memorial sloan kettering seeing a cancer-related psychologist to discuss how the cancer had affected my life and again, in the medical machinery, the sharp scent of disinfectant and medicine all around me.
back to the limbo of hesitancy, uncertainty and underlying fear.
today, i had a series of blood tests with the endocrinologist at the acupuncturist's office. ming jin also works at msk and has success treating cancer with chinese medicine. the results: my red and white blood cells are back to normal, i am only very slightly anemic, my blood pressure is back up to human speed and i've gained two pounds!
my post-chemo routine - acupuncture, fistfuls of vitamins (including resveratrol, tumeric, quercetin, shitake and reishi mushrooms, rosemary, rice bran, calendula, biotin, wheat embryo, vitamin D3 and omega-3), healing from penney leyshon, smoothies with ave, polymva and 3 packages of immunocal daily, all organic fruits and vegetables, no dairy, no wheat, miniscule amounts of meat and fish - seems to have done the trick.
but what was really amazing was how the news made me feel.
i'd just stepped off the platform and on to the train.
somehow being ill was like being caught in freeze tag. i was turned to stone.
spent 75% of my time sitting around in my pajamas researching the cancer, the drugs, the alternative therapies online. in between taking showers and getting dressed, i was chasing doctors, homeopaths, nutritionists, acupuncturists. i called friends and discussed my treatments while i made fresh vegetable juices, roasted cabbage and rutabagas, vegetable and fish soups. i wandered around the apartment in leggings and tunics because they were the easiest things to change in and out of in doctors' offices.
my main project was my body.
i couldn't seem to concentrate on much else.
but as i walked away from the endocrinologist's office, i was thinking about calling the plumber.
i am practically a normal functioning human!
i can go swimming without fear of catching a new virus, take pilates without feeling squeamish about the person on the mat before me, i can hug and kiss people without secretly wondering if they've got sore throats or colds.
i can think about work, bills, fixing the leaky washing machine, the stove that's hard to light, putting treads on the stairs.
my brain has switched gears.
how chronically-ill people get anything accomplished is incredible. and as the metaphysical oncologist said, "the right words from someone in a white coat can actually cause physical changes."
i am so lucky for having made it through the worst of the cancer at an accelerated pace.
still healing but for today, i feel SO much better.
thank you for all your help, my long-suffering supporters.
Tuesday, March 9, 2010
thanks a lot
better by the moment, turning back into a creature that resembles a human more than a star trek character. a soft fuzz all over my head and my eyes are getting clearer.
of course, the first hairs that return - seemingly hardier than before - are on my mustache, my legs and those horrid tiny ones BELOW my eyebrows, the ones you have to have waxed away.
my eyebrows themselves look like someone drew them on with a pencil and then erased them badly. they are weird little smudges. and my eyelashes, despite my using neulash assiduously, are thin pale rabbit lashes. you can only see them if you look really really closely in the magnifying mirror.
oh and while i am happily gaining weight, lack of exercise and chemo-induced ping-ponging hormones means i am gaining it in all the wrong places.
it's so unfair.
of course, the first hairs that return - seemingly hardier than before - are on my mustache, my legs and those horrid tiny ones BELOW my eyebrows, the ones you have to have waxed away.
my eyebrows themselves look like someone drew them on with a pencil and then erased them badly. they are weird little smudges. and my eyelashes, despite my using neulash assiduously, are thin pale rabbit lashes. you can only see them if you look really really closely in the magnifying mirror.
oh and while i am happily gaining weight, lack of exercise and chemo-induced ping-ponging hormones means i am gaining it in all the wrong places.
it's so unfair.
Monday, March 1, 2010
cancer phase two
went to see my very calm and metaphysical oncologist. as is his style, he had me listen to a very soothing chant, "om nama narayani..." and he asked me when i was going to write about my cancer treatments. i talked about my frustration with my doctor at memorial sloan kettering, i told him about re-thinking chemotherapy. he prescribed MORE supplements ($185.00) to help with the nerve damage and suggested twice-weekly intravenous glutathione (about $500 per dose) to get my immune system back to normal.
it seems that my immune system is so damaged by the chemotherapy that my current condition would be analogous to someone who is HIV+ which he asked me if i was. fortunately, unless i got it from the blood transfusions, i'm not.
i told him my theory (and practice), "if i believe i am well, i will be."
he answered: "most spiritual teachers as well as psychologists would agree with you. your mind can change your body."
so i left, scheduled one appointment for glutathione (all i could dream of affording), bought more supplements - i am now gulping down multi-colored capsules like jellybeans - and went to meet a friend (who is surfing in costa rica, skiing in argentina and on her way to australia next) to absorb some of her radiating positivity.
when i walked back in the door of my apartment, my phone rang. it was the metaphysical oncologist's secretary. she said that my memorial sloan kettering oncologist called him. he can no longer treat me. he told his secretary to tell me that he misunderstood about the chemotherapy. he can't endorse something that deviates from the standard procedure. however, he recommends i see yet another oncologist, this one at columbia presbyterian up at 165th st.
i am totally confused. the metaphysical oncologist has just sold me upstream. i ask the secretary again, "are you sure? we had a very long conversation about it. how can there be a 'misunderstanding'?" is he just scared about malpractice suits? is it insurance?
phase two in cancer treatments is discovering that the doctors are more scared than you are. scared of getting blamed. scared of insurance companies. scared of malpractice or the embarassment of a patient dying unexpectedly. scared of losing stature or patients if the word gets out.
i pointed out to the chemo doctors that my cancer has a 95% cure rate but only 70% of people survive chemotherapy. they say, "I know, we've made such strides!"
70%
that is a C, as one of my friends pointed out.
at the moment, the things that seem to make me feel best are acupuncture, penney leyshon, pilates and cutting sugar and animal products out of my diet.
though i fell off the wagon today with a decaf cappuccino (2 sugars) basking in the spring sunlight with my neighbor purvi and KNOWING that i am well.
(it's possible the vitamins work, too, but i am taking so many i can't tell which is doing what. as the chemo leaves my body, i will let you know more.)
Subscribe to:
Posts (Atom)