Maybe it wasn't such a good idea to have Christmas at our house during my chemo. If I'd known how hard it was going to be,I wouldn't have done it. So I'm glad I didn't. It was actually a lot of work, and I felt terrible during all of it. Yet it was the best ever.
I worked on Friday morning and had to pick up our beef at Shop-Rite. What a zoo! I had to pee and, as I stood in line holding my heavy basket, it suddenly occurred to me that I felt pretty awful. Day 2 of chemo hasn't been all that bad, with the steroids still in your system, and I had thought was pretty safe. But this was a new drug, and they keep telling me it's cumulative and I might feel worse as it goes on. It suddenly hit me that I might be in trouble, with a dozen people scheduled to arrive expecting a nice dinner in just over 24 hours.
What has turned out to be new and special about this chemo treatment is pain! During all of Friday, christmas eve and Christmas, I was beset by aching pains in my joints. I had sudden insight into what it may be like to be 80, as I hobbled around with painful hips, knees and feet. Plus, I felt just plain lousy, fatigued and queasy, if not completely nauseous.
Yet, somehow, we all pulled off a wonderful Christmas Eve dinner. On Friday, Margaret's friends Madelyn and Judy arrived and started peeling potatoes and stayed, working hard, through dinner. With 4 teenagers and Steve doing the work and me directing from the couch, then getting up to work, burning through my short energy supply and resting again, we got everything done. We even managed to make a nice pork roast for dinner and enjoy visiting with the kids before they went off to a party. I was so aware of the joy of Christmas as we listened to pandora radio playing Christmas oldies, chopping, peeling, decorating, or just being together.
On Saturday, steve and i got up early to get the rest of the meal ready. We were better organized than we've ever been and, with more help from the kids, managed to have everything perfect when family arrived at 4. By then, I was in a lot of pain but I still enjoyed the dinner and company.
By Saturday night, I started taking Percocet and stayed on it most of Sunday. This did not make me a ball of fire and I spent most of Christmas on the couch in my jammies. But no one cared. My Dad rubbed my feet and aching knees, Margaret ran me a bath, and I basically got waited on all day. Not a terrible way to spend a holiday, surrounded by the people I love most taking care of me.
Today is Monday, and I still feel as if someone took off with my vim and vigor, but the pain is less severe. Got through the day without Percocet. The big event today was the arrival of Butters, our newly adopted poodle/jack russel shelter dog. He did manage to pee on Joseph's bed already, but we hope that's an aberration. Otherwise, he is irresistibly cute and cuddly, loves sleeping on laps and following his new people around the house, head cocked to one side as he doesn't miss a trick!
So Merry Christmas from Jersey, where the normal stress of the season seemed to pass us by, in favor of a deep sense of peace and joy. Nothing like having cancer in your midst to keep everyone focused on what's important. We have always been a happy family, but everyone agreed that this was a particularly good time. I felt more relaxed than I ever have, freed of a compulsion to keep everything running smoothly, it ran just fine without my worrying.
So, I'm grateful I didn't know how hard it would be, how truly terrible I would feel. But to quote the Grinch, "Somehow, Christmas came...it came just the same." Chemo and all...
Peace, Colleen
Monday, December 26, 2011
Thursday, December 22, 2011
Yesterday was the first of the new chemo regimen. As feared, the Taxol allergic reaction business was stressful. Since there is a chance of allergic reaction, they have you take steroids in advance. In advance meant setting an alarm for 2 am and taking 5 pills, the 5 more at 8 am.
When I started the chemo, my job was to monitor whether it was making me feel anything wierd or bad. Apparently, if you get past the first 15 minutes, the odds are good you are okay. For the first ten minutes, all seemed well and I was breathing a sigh of relief. Then, suddenly, I got this really wierd flushing feeling in my chest. I was reading, so didn't pay attention at first then, when it didn't go away, hit the panic button.
This Panic button thing always gets a dramatic response. Within seconds, two nurses were in my cubicle, asking questions, looking worried and cutting off the drip. One grabbed the Benadryl and cortisone and had it at ready. I was feeling better. They phoned the doctor. Her word was to try again, at quarter speed and see what happens. Tried that. One minute in, th flushing feeling came back and I was having trouble swallowing. Stopped the meds again. This time, the doctor came herself, asked more questions and decreed they give me the Benadryl and cortisone and try again. Benadryl made me sleepy, then jumpy but, at quarter speed, we seemed okay. Only down side was I was attached to the chemo drip for 5 hours. The Benadryl made me jumpy! Legs twitchy and I was really unpleasant to have to lie still for so long. I am grateful we don't have to switch meds and derail the chemo process. Of course, this means we go through the same thing into weeks. Fun!
But today, I felt great (in chemo terms). Nausea is better, although I still have a burning in my stomach I thought would be behind me. Just another opportunity to practice letting go of what I wish I were feeling and accepting how I do. Still suck at this, but am getting better!
When I started the chemo, my job was to monitor whether it was making me feel anything wierd or bad. Apparently, if you get past the first 15 minutes, the odds are good you are okay. For the first ten minutes, all seemed well and I was breathing a sigh of relief. Then, suddenly, I got this really wierd flushing feeling in my chest. I was reading, so didn't pay attention at first then, when it didn't go away, hit the panic button.
This Panic button thing always gets a dramatic response. Within seconds, two nurses were in my cubicle, asking questions, looking worried and cutting off the drip. One grabbed the Benadryl and cortisone and had it at ready. I was feeling better. They phoned the doctor. Her word was to try again, at quarter speed and see what happens. Tried that. One minute in, th flushing feeling came back and I was having trouble swallowing. Stopped the meds again. This time, the doctor came herself, asked more questions and decreed they give me the Benadryl and cortisone and try again. Benadryl made me sleepy, then jumpy but, at quarter speed, we seemed okay. Only down side was I was attached to the chemo drip for 5 hours. The Benadryl made me jumpy! Legs twitchy and I was really unpleasant to have to lie still for so long. I am grateful we don't have to switch meds and derail the chemo process. Of course, this means we go through the same thing into weeks. Fun!
But today, I felt great (in chemo terms). Nausea is better, although I still have a burning in my stomach I thought would be behind me. Just another opportunity to practice letting go of what I wish I were feeling and accepting how I do. Still suck at this, but am getting better!
Wednesday, December 21, 2011
What life is like now...
My mother in law Leanna asked me an interesting question the other night. She wondered why, when I am doing so well coping physically and mentally with the cancer, my blog seems to focus on "the dark side." Since that wasn't my intention, here's a more balanced view of my life theses days. It's not all gory medical visits and nausea. I am doing extremely well, blood counts good, spirits good, energy as good as could be reasonably expected.
This is my life: When I got my diagnosis, I made some decisions. I wanted to keep coaching my current clients but not to actively grow the business until I was well enough to know I could handle more. My first obligation was to take care of the people and businesses I was committed to. So, I immediately ceased all marketing activities except social media and email newsletters. To reduce expenses, I reduced my team's hours and let our intern go. I moved out of my office, while having them still answer my phone and take mail.
I have shifted my bi- monthly clients to meet during the "up" portion of the 2- week chemo cycle. My clients have been wonderfully flexible and accommodating. To a person, their attitude has been "first priority is getting you well." Maybe this is not a business-like mindset, at least not in the short term! Yet, in my work with them, we try not to treat people like cogs in a machine, but to assume they are thinking, caring people. Of course, we also let people go when they can't handle being held accountable, but I always ask them as leaders to look first in the mirror when not getting the results they want from their team. So, I guess it's not surprising that they have decided to work with me as I face this shitty thing.
So I once again work from home. In the past, this was hard for me, but now I love it. I wake up and have coffee with Steve. He makes breakfast for me and for Joseph before he heads off to his internship. I write in my gratitude journal and meditate, do Sedona releasing, talk to Steve, blog, or whatever it takes to get my spirits up and ready to face the day. Depending on how I feel, this is easy or it is hard.
My days consist of a few appointments and lots of open space. On the second week of the chemo cycle, I often have 1-2 offsite meetings with clients. I try to leave the Monday after chemo open, because that's a hard day in which I might not be much good to anyone. I group meetings and coaching sessions in the other week where I can. Some days, the balance is just right. Others are very demanding or boring. I keep working to get it right.
It's odd (and very lucky) that I have so much unstructured time. On good days, I work on the house, write (which takes far more energy), cook wonderful meals, exercise and catch up on business stuff. On bad days, I read, watch old movies and sleep. It's an odd, suspended kind of life and, when I feel strong, I can start to feel guilty that I'm not doing more. Then I catch a virus, or the chemo just seems to rear up, and I am grateful I have the time to do nothing much. It's not a way of life I'd want forever, and I'll be glad when my energy comes roaring back, but it's a good life, and one I am doing my best to savor.
So, if you are nearby, please reach out and visit. All I ask is that you cancel if you are sick and that you understand if I cancel because I am. Call me. Spending some of my open time talking to old friends adds richness to my life. I am committed to investing the energy I have to building depth into my life. My son Joseph said to me the other day that is our connections to other people that give meaning to our lives. So I am strengthening the connections I have with all of you, reading fiction (which has always deepened my life by bringing of other lives into it), creating beauty and order by working on our house, cooking good meals and feeding my family, singing and writing.
One thing I know now for sure is that my time here will be too short, whether it's 50 years or 5. I still struggle with the great questions of life, with leading a life of purpose. I am too damned analytical to accept easy answers, yet I still strive for inner peace. I suspect my life will not be large, not of a scale that impacts human history in any measurable way. What has kept me from great ambition, other than pure cowardice, is a lack of certainty. I have never wanted to stride masterfully into the world, bending people and events to my will, until I knew the effects would be good. Call it the curse of the history major, but you don't have to look far to know that "great" men (mostly men) have done tremendous evil. And not one of them hasn't had the courage of their convictions that they are right. Delusional, but right.
So I wonder, and question myself. And I know, facing this cancer, that the price I am most likely to pay for this is that I will live a small and unremarkable life. My impact, like that of Dorothea in Middlemarch, will be like the force of a great river broken into small rivulets, impacting other lives on a small scale, where I can have at least some confidence of doing little harm. Even there, it's tough to tell. Any time a business owner let's someone go, makes a major investment, chooses not to act, I know there will be ripple effects neither of us can see.
So that is my life right now. Who knows, maybe the book I plan to write, the direction I take my business when I get well, a complete change of plans or circumstances, will change the trajectory and find me on a larger stage. It would be cool and wonderful to know I am making a large impact, so long as I don't forget the blinding and intoxicating nature of power. Even Frodo could not destroy the ring at the end. It was only his compassion and humility, in the form of the broken and valueless life he spared, that saved him and the world.
True greatness requires humility and I am coming to terms with my own weaknesses as I fight off this nasty disease and hope for just a bit more time to figure a few things out and do what I can to leave the world better for having passed through it. Don't we all?
This is my life: When I got my diagnosis, I made some decisions. I wanted to keep coaching my current clients but not to actively grow the business until I was well enough to know I could handle more. My first obligation was to take care of the people and businesses I was committed to. So, I immediately ceased all marketing activities except social media and email newsletters. To reduce expenses, I reduced my team's hours and let our intern go. I moved out of my office, while having them still answer my phone and take mail.
I have shifted my bi- monthly clients to meet during the "up" portion of the 2- week chemo cycle. My clients have been wonderfully flexible and accommodating. To a person, their attitude has been "first priority is getting you well." Maybe this is not a business-like mindset, at least not in the short term! Yet, in my work with them, we try not to treat people like cogs in a machine, but to assume they are thinking, caring people. Of course, we also let people go when they can't handle being held accountable, but I always ask them as leaders to look first in the mirror when not getting the results they want from their team. So, I guess it's not surprising that they have decided to work with me as I face this shitty thing.
So I once again work from home. In the past, this was hard for me, but now I love it. I wake up and have coffee with Steve. He makes breakfast for me and for Joseph before he heads off to his internship. I write in my gratitude journal and meditate, do Sedona releasing, talk to Steve, blog, or whatever it takes to get my spirits up and ready to face the day. Depending on how I feel, this is easy or it is hard.
My days consist of a few appointments and lots of open space. On the second week of the chemo cycle, I often have 1-2 offsite meetings with clients. I try to leave the Monday after chemo open, because that's a hard day in which I might not be much good to anyone. I group meetings and coaching sessions in the other week where I can. Some days, the balance is just right. Others are very demanding or boring. I keep working to get it right.
It's odd (and very lucky) that I have so much unstructured time. On good days, I work on the house, write (which takes far more energy), cook wonderful meals, exercise and catch up on business stuff. On bad days, I read, watch old movies and sleep. It's an odd, suspended kind of life and, when I feel strong, I can start to feel guilty that I'm not doing more. Then I catch a virus, or the chemo just seems to rear up, and I am grateful I have the time to do nothing much. It's not a way of life I'd want forever, and I'll be glad when my energy comes roaring back, but it's a good life, and one I am doing my best to savor.
So, if you are nearby, please reach out and visit. All I ask is that you cancel if you are sick and that you understand if I cancel because I am. Call me. Spending some of my open time talking to old friends adds richness to my life. I am committed to investing the energy I have to building depth into my life. My son Joseph said to me the other day that is our connections to other people that give meaning to our lives. So I am strengthening the connections I have with all of you, reading fiction (which has always deepened my life by bringing of other lives into it), creating beauty and order by working on our house, cooking good meals and feeding my family, singing and writing.
One thing I know now for sure is that my time here will be too short, whether it's 50 years or 5. I still struggle with the great questions of life, with leading a life of purpose. I am too damned analytical to accept easy answers, yet I still strive for inner peace. I suspect my life will not be large, not of a scale that impacts human history in any measurable way. What has kept me from great ambition, other than pure cowardice, is a lack of certainty. I have never wanted to stride masterfully into the world, bending people and events to my will, until I knew the effects would be good. Call it the curse of the history major, but you don't have to look far to know that "great" men (mostly men) have done tremendous evil. And not one of them hasn't had the courage of their convictions that they are right. Delusional, but right.
So I wonder, and question myself. And I know, facing this cancer, that the price I am most likely to pay for this is that I will live a small and unremarkable life. My impact, like that of Dorothea in Middlemarch, will be like the force of a great river broken into small rivulets, impacting other lives on a small scale, where I can have at least some confidence of doing little harm. Even there, it's tough to tell. Any time a business owner let's someone go, makes a major investment, chooses not to act, I know there will be ripple effects neither of us can see.
So that is my life right now. Who knows, maybe the book I plan to write, the direction I take my business when I get well, a complete change of plans or circumstances, will change the trajectory and find me on a larger stage. It would be cool and wonderful to know I am making a large impact, so long as I don't forget the blinding and intoxicating nature of power. Even Frodo could not destroy the ring at the end. It was only his compassion and humility, in the form of the broken and valueless life he spared, that saved him and the world.
True greatness requires humility and I am coming to terms with my own weaknesses as I fight off this nasty disease and hope for just a bit more time to figure a few things out and do what I can to leave the world better for having passed through it. Don't we all?
Thursday, December 8, 2011
On loss and gain
Yesterday was the last of the first half of my chemo treatments. In two weeks I start with Taxol. Nausea is not as big a problem with that drug. As I sit here battling the queasiness that's been my daily companion for two months, that sounds like really good news! The bad news is that there is a high risk of allergic reaction. That means you take steroids beforehand and then they titer the drug into you over 4 hours, watching carefully for any reaction. If you feel anything odd at all, they intervene by pumping other drugs into your system to combat the allergic response. If it's really bad, they stop the drug, but I get the feeling it has to be pretty bad.
Russian Roulette with anaphylactic shock. Anyone want to do it for me? It sounds both terrifying and stressful. It makes it my job to monitor myself and report to them. Call it too close, and I get pumped with bad stuff that makes me jittery, unable to sleep, and God knows what else. Call it loose and I'm toying with serious allergic reaction. Ever read a description of what anaphylaxis actually is in your body? Don't.
After 4 treatments like that, with two weeks in between as usual, the chemo phase should be over. With great fortune, forever. Those of you praying for me, and I know there are lots, that's what we are aiming for!
After that, I will have a mastectomy, probably just one, or maybe two, depending on the recommendation. I haven't really looked into the data on this and it depends on what they know about the likelihood that this cancer is already hiding in the other breast. No sign of that, but we can't see single cells yet. Since we know it's in my lymph system, the cat is out of the bag and the likelihood of cancer cells lurking pretty much anywhere is high. If the chemo and my immune system don't kill them, they will pop up one day. Unclear whether chopping additional parts off makes a big difference. Modern thinking about cancer is that it's a systemic, not a tumor disease. The underlying conditions that allowed it to occur and the body's lack of adequate response have to be addressed. But we know very little about either.
This aside, there is that one mastectomy to face. And what a thing that is. I've been thinking of the harrowing scene in The Pawnbroker, where the victim of Nazi medical torture realizes they are removing a piece of his hip. And it is this, more than the agony of everything done to him so far, that breaks him. The permanence of it, the knowing that this is something that will never heal, that they are succeeding in taking away a part of him and never giving it back, that breaks his will and his heart.
I draw no parallel between the two situations, except the profound psychological impact of permanent bodily loss. For me, there is the possibility of reconstruction, about which I hear decidedly mixed things, from it's great and you end up with "the boobs everyone wants" (actual quote from survivor friend of friend), to "wish I hadn't done it." (actual quote from survivor sister of friend). Sigh...
But that doesn't change the initial grief of letting go of a familiar and, if not essential (I've never been one to build my self-worth on my boobs - never had such great ones to build it on, so that was easy!) body part that hurts. And I'm not without vanity (for sure!). I've never been a great beauty or head-turner, but I know Idid fairly well in the genetic lottery, thanks to my lovely mom and handsome dad. There have always been people in my life, especially those who not limited to media-driven ideals of attractiveness, who have called me beautiful, and I like it. Who wouldn't? But it is something we trade in life, currency paid for the privilege of time. Cancer just makes the choice more stark, and more deliberate.
Temporary baldness, circles under the eyes, older looking skin are the first wages paid, the first obvious reminders of the ultimate equation. Now, Botox and liposuction have never been my plan. My concessions tithe cultural obsession with looking young include hair color and oil of Olay Regenerist. Not t say there won't be more of this ilk, but I'm basically planning to age gracefully.
But mastectomy raises the bar pretty massively. It's not a normal event, like wrinkles and sagging, something we all face, it's a special choice. Like chewing off a trapped limb, the conscious decision that your survival, your life, your future, is worth more than this thing you once thought was yours, is a "part of you" has to be faced.
So I'm starting to mourn for my lovely left breast, which will no longer be mine. I honor it for the tough duty it survived, stretch-marked and weary, from two pregnancies and feeding two babies. I will miss its easy, swelling, cleavage, found only recently when my breasts followed a family pattern of growing in my forties. I will miss it as one of a matched set that reconstruction, were I to choose it, won't fully replace.
What I hope, is that its absence will serve as a reminder, a small war monument embedded just above my heart; like all monuments, a deliberate act of storytelling that creates meaning behind the suffering. I hope the scars, or even a fake boob, will help remind me of the value I placed upon my own life. It will call to my attention daily to the priority I gave to more birthdays, more graduations, more people coached, taught, changed by my efforts, more people sung to, more beauty created, more writing done, more friends and family given my love. It is a gift, this monument to my choice.
So I say "bring it on," grief, pain, scars and all. And I will learn to love the lessons, so hard-won; on letting go, moving on, embracing life, maybe more than I ever appreciated that mammary gland of mine. A fitting honor for a pretty nice breast that didn't get half this much attention during its lifetime, wouldn't you say? LOL!
Colleen
Russian Roulette with anaphylactic shock. Anyone want to do it for me? It sounds both terrifying and stressful. It makes it my job to monitor myself and report to them. Call it too close, and I get pumped with bad stuff that makes me jittery, unable to sleep, and God knows what else. Call it loose and I'm toying with serious allergic reaction. Ever read a description of what anaphylaxis actually is in your body? Don't.
After 4 treatments like that, with two weeks in between as usual, the chemo phase should be over. With great fortune, forever. Those of you praying for me, and I know there are lots, that's what we are aiming for!
After that, I will have a mastectomy, probably just one, or maybe two, depending on the recommendation. I haven't really looked into the data on this and it depends on what they know about the likelihood that this cancer is already hiding in the other breast. No sign of that, but we can't see single cells yet. Since we know it's in my lymph system, the cat is out of the bag and the likelihood of cancer cells lurking pretty much anywhere is high. If the chemo and my immune system don't kill them, they will pop up one day. Unclear whether chopping additional parts off makes a big difference. Modern thinking about cancer is that it's a systemic, not a tumor disease. The underlying conditions that allowed it to occur and the body's lack of adequate response have to be addressed. But we know very little about either.
This aside, there is that one mastectomy to face. And what a thing that is. I've been thinking of the harrowing scene in The Pawnbroker, where the victim of Nazi medical torture realizes they are removing a piece of his hip. And it is this, more than the agony of everything done to him so far, that breaks him. The permanence of it, the knowing that this is something that will never heal, that they are succeeding in taking away a part of him and never giving it back, that breaks his will and his heart.
I draw no parallel between the two situations, except the profound psychological impact of permanent bodily loss. For me, there is the possibility of reconstruction, about which I hear decidedly mixed things, from it's great and you end up with "the boobs everyone wants" (actual quote from survivor friend of friend), to "wish I hadn't done it." (actual quote from survivor sister of friend). Sigh...
But that doesn't change the initial grief of letting go of a familiar and, if not essential (I've never been one to build my self-worth on my boobs - never had such great ones to build it on, so that was easy!) body part that hurts. And I'm not without vanity (for sure!). I've never been a great beauty or head-turner, but I know Idid fairly well in the genetic lottery, thanks to my lovely mom and handsome dad. There have always been people in my life, especially those who not limited to media-driven ideals of attractiveness, who have called me beautiful, and I like it. Who wouldn't? But it is something we trade in life, currency paid for the privilege of time. Cancer just makes the choice more stark, and more deliberate.
Temporary baldness, circles under the eyes, older looking skin are the first wages paid, the first obvious reminders of the ultimate equation. Now, Botox and liposuction have never been my plan. My concessions tithe cultural obsession with looking young include hair color and oil of Olay Regenerist. Not t say there won't be more of this ilk, but I'm basically planning to age gracefully.
But mastectomy raises the bar pretty massively. It's not a normal event, like wrinkles and sagging, something we all face, it's a special choice. Like chewing off a trapped limb, the conscious decision that your survival, your life, your future, is worth more than this thing you once thought was yours, is a "part of you" has to be faced.
So I'm starting to mourn for my lovely left breast, which will no longer be mine. I honor it for the tough duty it survived, stretch-marked and weary, from two pregnancies and feeding two babies. I will miss its easy, swelling, cleavage, found only recently when my breasts followed a family pattern of growing in my forties. I will miss it as one of a matched set that reconstruction, were I to choose it, won't fully replace.
What I hope, is that its absence will serve as a reminder, a small war monument embedded just above my heart; like all monuments, a deliberate act of storytelling that creates meaning behind the suffering. I hope the scars, or even a fake boob, will help remind me of the value I placed upon my own life. It will call to my attention daily to the priority I gave to more birthdays, more graduations, more people coached, taught, changed by my efforts, more people sung to, more beauty created, more writing done, more friends and family given my love. It is a gift, this monument to my choice.
So I say "bring it on," grief, pain, scars and all. And I will learn to love the lessons, so hard-won; on letting go, moving on, embracing life, maybe more than I ever appreciated that mammary gland of mine. A fitting honor for a pretty nice breast that didn't get half this much attention during its lifetime, wouldn't you say? LOL!
Colleen
Tuesday, November 29, 2011
Chemo poetry
Haiku
Nausea never leaves
Slow burn and quiver inside
My unwelcome friend
Sonnet
Oh chemo mine, I hold you in my soul,
Adventure unlike any I have faced
The poison cocktail brewed to make me whole
This terror not escaped from but embraced.
Such oddness in the notion from the start.
To drink a toxin, knowing it will kill
My cells, myself, my corpuscles, my heart
In hopes the cancer falls more quickly still
A dreadful bargain medicine does urge.
Who knows the price that will at last be paid
When from this dark I once again emerge
My body, cured but damaged, hounded, frayed.
Yet may the days and years so dearly bought
Seem ever dearer for the battle fought.
So creativity comes where it will. Who knows why I was moved to write poems tonight, but there it is. It was fun to take on the challenge of two really rigid forms of poetry and see what came of it. Hope you are amused. I was!
Nausea never leaves
Slow burn and quiver inside
My unwelcome friend
Sonnet
Oh chemo mine, I hold you in my soul,
Adventure unlike any I have faced
The poison cocktail brewed to make me whole
This terror not escaped from but embraced.
Such oddness in the notion from the start.
To drink a toxin, knowing it will kill
My cells, myself, my corpuscles, my heart
In hopes the cancer falls more quickly still
A dreadful bargain medicine does urge.
Who knows the price that will at last be paid
When from this dark I once again emerge
My body, cured but damaged, hounded, frayed.
Yet may the days and years so dearly bought
Seem ever dearer for the battle fought.
So creativity comes where it will. Who knows why I was moved to write poems tonight, but there it is. It was fun to take on the challenge of two really rigid forms of poetry and see what came of it. Hope you are amused. I was!
Friday, November 25, 2011
Thursday, November 24, 2011
Another one for the bucket list...
There is nothing quite like an MRI, is there? If you haven't done one, I suggest you hold off. But if you need one, try to think about it like I do, as the worst video game ever. It's helpful to imagine you have entered a video arcade when the crazy loud clanking, banging and buzzing noises start, filling your head even through the ear plugs.
Anyway, had to have a brain MRI two days ago because I had a 5-day headache in one location at the back of my head. Good news: they say nothing; no blood clots or brain rumors. Bad news: unexplained nasty headache. Good news: finally seems to have gone away on its own.
There is a rhythm to some of the scans, and you can imagine yourself at a rave jumping like mad to dub step. Its boring to be stuck in the machine for 30-40 minutes but I was comfortable enough. I like the challenge of being alone with my thoughts and not letting it get to me.
The most important thing is to keep my eyes closed and concentrate on the knowledge that I am calm, and safe. Any thought about being locked inside a small tube with a grid one inch in front of my face are scrupulously avoided, since I tend to be claustrophobic. It also helps to smile a lot and think about how absurd the whole thing is. If dignity is important to you, don't get sick!
Best approach to cancer as well as MRIs seems to be to turn them into an exercise in non-resistance. The more I allow the noises to simply fill my head and not follow any thoughts that evaluate or describe them, the more the sheer intensity starts to drive out distraction and I feel buzzed and almost meditative. It's kind of cool.
We are into round 3 of chemo. Was able to walk up both flights of stairs on arrival - a self- prescribed health metric and am now 3 for 3. Doctor thrilled with my response. Blood counts great, breast improving, no sign of lymph nodes. Gave me new meds for nausea, which appears to be my weak point. So a shitty two weeks this time, but we are apparently still on track.
Margaret drove me in and waited for me while doing her pschool work. She is an immensely comforting presence, a young and lovely being moving through the world with grace and humor. I told her today that I will beat this and get better but that I also have comfort in knowing she would be okay without me. She said quietly, with tears in her eyes, "Yes, that would really suck. But you are right. I would be okay." And I am at peace.
She tells me a lot these days that my experience Is helping her. Thank god she chooses to see it that way. It gives her perspective even in the hotbed of college angst and self-absorption to have some hard truths about life and what is really essential in front of you. Instead of whining about what a hassle it is to deal with this while they should ideally be able to focus on themselves, both my kids seem to have taken a more useful path. They seem to be using it to help them maintain perspective. Plus, they seem to be shouldering the responsibility they have to themselves and our family to get the most out of the expensive private educations we've been able to provide them. And both are more responsive and loving in getting back to us when we text or call at school. I am more proud of them than I can say.
I wish all of you a joyous Thanksgiving. I am truly grateful for my life. Now, more than ever. Colleen
Anyway, had to have a brain MRI two days ago because I had a 5-day headache in one location at the back of my head. Good news: they say nothing; no blood clots or brain rumors. Bad news: unexplained nasty headache. Good news: finally seems to have gone away on its own.
There is a rhythm to some of the scans, and you can imagine yourself at a rave jumping like mad to dub step. Its boring to be stuck in the machine for 30-40 minutes but I was comfortable enough. I like the challenge of being alone with my thoughts and not letting it get to me.
The most important thing is to keep my eyes closed and concentrate on the knowledge that I am calm, and safe. Any thought about being locked inside a small tube with a grid one inch in front of my face are scrupulously avoided, since I tend to be claustrophobic. It also helps to smile a lot and think about how absurd the whole thing is. If dignity is important to you, don't get sick!
Best approach to cancer as well as MRIs seems to be to turn them into an exercise in non-resistance. The more I allow the noises to simply fill my head and not follow any thoughts that evaluate or describe them, the more the sheer intensity starts to drive out distraction and I feel buzzed and almost meditative. It's kind of cool.
We are into round 3 of chemo. Was able to walk up both flights of stairs on arrival - a self- prescribed health metric and am now 3 for 3. Doctor thrilled with my response. Blood counts great, breast improving, no sign of lymph nodes. Gave me new meds for nausea, which appears to be my weak point. So a shitty two weeks this time, but we are apparently still on track.
Margaret drove me in and waited for me while doing her pschool work. She is an immensely comforting presence, a young and lovely being moving through the world with grace and humor. I told her today that I will beat this and get better but that I also have comfort in knowing she would be okay without me. She said quietly, with tears in her eyes, "Yes, that would really suck. But you are right. I would be okay." And I am at peace.
She tells me a lot these days that my experience Is helping her. Thank god she chooses to see it that way. It gives her perspective even in the hotbed of college angst and self-absorption to have some hard truths about life and what is really essential in front of you. Instead of whining about what a hassle it is to deal with this while they should ideally be able to focus on themselves, both my kids seem to have taken a more useful path. They seem to be using it to help them maintain perspective. Plus, they seem to be shouldering the responsibility they have to themselves and our family to get the most out of the expensive private educations we've been able to provide them. And both are more responsive and loving in getting back to us when we text or call at school. I am more proud of them than I can say.
I wish all of you a joyous Thanksgiving. I am truly grateful for my life. Now, more than ever. Colleen
Saturday, November 19, 2011
Feeling happy while feeling crappy
Here's one way to feel happy while feeling crappy. As I build this skill set, I'll share what works with all of you. Let me know if you try anything I suggest that helps you over the hurdles in your own life. And please share other things that help. I can use all the help I can get!
This morning, I am dealing with the following physical crap. 1 a headache that is likely the beginning of the bone pain that kicked in same time two weekends ago. 2. Nausea and 3. Fatigue (we're still here in chemo land, Dorothy!).
Here's what helps: I sit quietly and focus my attention, not on the discomfort itself ( doing that makes it worse), but on the emotions and thoughts it brings up. Here are some of them...
This is terrible. I hate this. I need to do something. I shouldn't be feeling like this. I should be handling this better. If I were more skilled, this wouldn't bother me so much. This is bad. Something must really be wrong to feel this bad. This pisses me off. I am sick and tired of this....the list goes on, and on, and on....
And here's what I do with all that. I accept it. I allow my resistance to all of it to fall, and I just allow the rush of thoughts, feelings and beliefs to flood into my consciousness without resistance. I experiment with just allowing all that stuff to simply exist inside my head. And here's the really important step. When I start to resist it, to push it away, to add new layers of thoughts like "this is just awful" or " this is too much", I allow those, too. For a moment in time, I simply try the experiment of letting absolutely every ridiculous, crazy, stupid thing that pops into my head to have permission to be there.
And here's what happens. It's all okay. The emotions well and they ebb. The thoughts pass through and move on. And I am left with a feeling of deep, inner peace that comes from simply acknowledging that all that stuff, because some part of my brain has deemed it okay, has lost its power to harm. If a feeling is just a feeling, then what is the harm? If I am not afraid to feel afraid, where is the harm? If I can forgive myself for judging myself, then who is hurt by the judgement?
At the core of this practice, which I learned from the Sedona method, is a recognition that, if we can make a choice to allow, rather than resist, our emotions, we can handle them. There appears to be a part of our brain, some kind of executive function, that exists separately from the emotion. We access it, not by resisting the emotion, trying to change it or make it go away, but by letting it be.
It makes sense that our emotions are signals that something from our environment is impacting us and needs addressing. Once we address it, the signal has done its job and the body can turn on the off switch. The question is, can we access the off switch consciously, when we know the situation can't be changed, and the emotion itself has become a problem? I think we can. But the irony is that the off switch looks more like an "on." Buddhists say "What we resist, persists." Spiritual take on this aside, I have observed it to be true in the test tube I live inside. Try it and see if it's also true for you.
This skill of focusing my conscious mind on allowing, rather than resisting emotional and cognitive reactions seems to change their course. Over and over again, I find this practice simply works in an almost magical way. I would love to see an EEG or brain scan looks like when I do this. I do know how it feels, and it feels great.
Some people give this experience a spiritual name, they call this inner calm soul, or grace, or an awareness of God. For me, that is less important than the fact of my own ability to feel it. The calm at the center of my storm is something I experience directly. And I know it is good.
Here I sit, nauseous and tired and perfectly content. Letting the emotions around it, and the thoughts that drift in and out of my mind about it, pass through on their merry way. And I, some part of me that exists here beyond all that, is at rest and at peace, filled with joy at being here on this gorgeous Fall day. Crappy and happy and very much alive.
Peace, Colleen
This morning, I am dealing with the following physical crap. 1 a headache that is likely the beginning of the bone pain that kicked in same time two weekends ago. 2. Nausea and 3. Fatigue (we're still here in chemo land, Dorothy!).
Here's what helps: I sit quietly and focus my attention, not on the discomfort itself ( doing that makes it worse), but on the emotions and thoughts it brings up. Here are some of them...
This is terrible. I hate this. I need to do something. I shouldn't be feeling like this. I should be handling this better. If I were more skilled, this wouldn't bother me so much. This is bad. Something must really be wrong to feel this bad. This pisses me off. I am sick and tired of this....the list goes on, and on, and on....
And here's what I do with all that. I accept it. I allow my resistance to all of it to fall, and I just allow the rush of thoughts, feelings and beliefs to flood into my consciousness without resistance. I experiment with just allowing all that stuff to simply exist inside my head. And here's the really important step. When I start to resist it, to push it away, to add new layers of thoughts like "this is just awful" or " this is too much", I allow those, too. For a moment in time, I simply try the experiment of letting absolutely every ridiculous, crazy, stupid thing that pops into my head to have permission to be there.
And here's what happens. It's all okay. The emotions well and they ebb. The thoughts pass through and move on. And I am left with a feeling of deep, inner peace that comes from simply acknowledging that all that stuff, because some part of my brain has deemed it okay, has lost its power to harm. If a feeling is just a feeling, then what is the harm? If I am not afraid to feel afraid, where is the harm? If I can forgive myself for judging myself, then who is hurt by the judgement?
At the core of this practice, which I learned from the Sedona method, is a recognition that, if we can make a choice to allow, rather than resist, our emotions, we can handle them. There appears to be a part of our brain, some kind of executive function, that exists separately from the emotion. We access it, not by resisting the emotion, trying to change it or make it go away, but by letting it be.
It makes sense that our emotions are signals that something from our environment is impacting us and needs addressing. Once we address it, the signal has done its job and the body can turn on the off switch. The question is, can we access the off switch consciously, when we know the situation can't be changed, and the emotion itself has become a problem? I think we can. But the irony is that the off switch looks more like an "on." Buddhists say "What we resist, persists." Spiritual take on this aside, I have observed it to be true in the test tube I live inside. Try it and see if it's also true for you.
This skill of focusing my conscious mind on allowing, rather than resisting emotional and cognitive reactions seems to change their course. Over and over again, I find this practice simply works in an almost magical way. I would love to see an EEG or brain scan looks like when I do this. I do know how it feels, and it feels great.
Some people give this experience a spiritual name, they call this inner calm soul, or grace, or an awareness of God. For me, that is less important than the fact of my own ability to feel it. The calm at the center of my storm is something I experience directly. And I know it is good.
Here I sit, nauseous and tired and perfectly content. Letting the emotions around it, and the thoughts that drift in and out of my mind about it, pass through on their merry way. And I, some part of me that exists here beyond all that, is at rest and at peace, filled with joy at being here on this gorgeous Fall day. Crappy and happy and very much alive.
Peace, Colleen
Friday, November 18, 2011
And the real battle begins....
It has been a hard week. After my second chemo treatment last week, I felt good for a few days, he usual. On Sunday, the steroids wore off and the worst of it kicked in, as usual. This time, I was prepared and things went well for awhile. My Dad came down to visit because Steve was to be away. I helped make a delicious dinner on Sunday. Monday, we went to Lowes and grocery shopping and I read and rested.
Things started getting hard on Tuesday when, instead of feeling better, I felt slightly worse. What is hardest at this point is the nausea. Although the anti-emetics control a lot of it and I am not vomiting my immortal soul, as Twain would have it, I found myself with a slightly burning stomach and nausea all day. Since I was waiting for workers to come measure our kitchen, I didn't take the anti-nausea med that makes me sleepy. Instead, I tried what had worked in the past, which was to keep my stomach full. Nothing worked, despite eating anything I could think of all day. By nightfall, I was exhausted, grouchy, worn out by the long, slow grind of feeling bad.
All my life, I have been a creature of feeling. Very much in-touch with my physical and emotional state, I have used them as a barometer of how well life was going. Although I have chosen courses of action and followed them, I've never been good at ignoring the signals that told me something was "too hard", "too scary"' etc. This has meant that I've never been a particularly disciplined person.
On the other hand, I has given me strengths others don't always have. I've never been good at hurting other people in order to get my way, for example. Since other people's pain feels bad to me, I try to avoid it. I've never tended to excess in many areas, since my internal discomfort would weigh in to protect me and bring me back to center. I've tended to avoid really damaged people, since their obvious pain and anger triggers my emotions and I self-protectively avoid being vulnerable to them. In short, it has made me sensitive and sensible and kept me fairly healthy.
Now all that is stripped away and I have to find a new way to be. I feel lousy all the time. I feel nauseated, fatigued and vaguely unwell all the time. What I learned this week is that, if I do what I've always done when that is true, I will be miserable and depressed. It Is a hard adjustment to make.
In the past, I've been a baby about being sick. Because I am so used to feeling really good, my reaction when feeling a bit les than that has been to stop, curl up around myself, take medicine if I need it and wait it out. This has worked well. I am rarely sick more than a day or two, I heal and get back in the saddle.
Three days of nausea and fatigue and trying to cope by reading and resting has been really tough. The signs of incipient depression loomed; nothing seemed worth the effort, nothing seemed appealing. Tuesday night, I roused myself to take a walk. It was gorgeous out, cool and quiet on the streets of our little village. Yet the nausea wouldn't leave me and, halfway through I stopped, feeling unable to take another step. Then, from somewhere inside me, an orneriness rose up and joined the fray. Standing there under the street lamp with Steve, I said out loud "I will NOT mind. I will NOT mind this. I will NOT mind being nauseous!" and I kept walking. And I did not mind. I was nauseous, but I could ignore it, and I got through the walk, fiercely refusing to let the nausea get under my skin.
So I am embarked on a new journey of not minding, and it's a totally new adventure. In many ways, the drama of diagnosis, the excitement of massive change, the incredible challenge of facing such momentous news and incorporating it into my life suited me better. My natural dramatic flair kicked in an allowed me to transform the nightmare into adventure. Crisis has always brought out the best in me. But this long slow, boring siege of feeling like crap all the time, is actually the deeper challenge. Not surprising.
So, now I see the enemy. In fact, I have fallen before it, lain for a few days prostrate and miserable. Last night, I realized that this less exciting, far more threatening monster of despair and depression, the death of a thousand cuts, is the real battle. How to be constantly nauseous and remain cheerful, hopeful, powerful? This will clearly take a metal toughness and discipline nothing else in my life has required. Here is where I will find out what I am made of.
So the game plan is this...rigid discipline with affirmations, gratitude journal, blogging, meditation, and all the things that keep me whole. Discipline of mind to turn my attention away from negative thoughts. Scheduling time to interact with people ( avoiding group events that brought me a virus last week I did not need added to the mix), to sing, to exercise, to laugh every day.
Finally, I can get my curious mind interested in this process. What is it like to become a person not defined by how I feel? I need to be connected to a sense of purpose that goes beyond chow I feel right now. I need to keep my reasons for surviving this in front of me at all times. I need to tap into something greater than how I feel right now to keep me going. All the time, not some of the time. How strange it will be. I am looking forward to finding out.
Things started getting hard on Tuesday when, instead of feeling better, I felt slightly worse. What is hardest at this point is the nausea. Although the anti-emetics control a lot of it and I am not vomiting my immortal soul, as Twain would have it, I found myself with a slightly burning stomach and nausea all day. Since I was waiting for workers to come measure our kitchen, I didn't take the anti-nausea med that makes me sleepy. Instead, I tried what had worked in the past, which was to keep my stomach full. Nothing worked, despite eating anything I could think of all day. By nightfall, I was exhausted, grouchy, worn out by the long, slow grind of feeling bad.
All my life, I have been a creature of feeling. Very much in-touch with my physical and emotional state, I have used them as a barometer of how well life was going. Although I have chosen courses of action and followed them, I've never been good at ignoring the signals that told me something was "too hard", "too scary"' etc. This has meant that I've never been a particularly disciplined person.
On the other hand, I has given me strengths others don't always have. I've never been good at hurting other people in order to get my way, for example. Since other people's pain feels bad to me, I try to avoid it. I've never tended to excess in many areas, since my internal discomfort would weigh in to protect me and bring me back to center. I've tended to avoid really damaged people, since their obvious pain and anger triggers my emotions and I self-protectively avoid being vulnerable to them. In short, it has made me sensitive and sensible and kept me fairly healthy.
Now all that is stripped away and I have to find a new way to be. I feel lousy all the time. I feel nauseated, fatigued and vaguely unwell all the time. What I learned this week is that, if I do what I've always done when that is true, I will be miserable and depressed. It Is a hard adjustment to make.
In the past, I've been a baby about being sick. Because I am so used to feeling really good, my reaction when feeling a bit les than that has been to stop, curl up around myself, take medicine if I need it and wait it out. This has worked well. I am rarely sick more than a day or two, I heal and get back in the saddle.
Three days of nausea and fatigue and trying to cope by reading and resting has been really tough. The signs of incipient depression loomed; nothing seemed worth the effort, nothing seemed appealing. Tuesday night, I roused myself to take a walk. It was gorgeous out, cool and quiet on the streets of our little village. Yet the nausea wouldn't leave me and, halfway through I stopped, feeling unable to take another step. Then, from somewhere inside me, an orneriness rose up and joined the fray. Standing there under the street lamp with Steve, I said out loud "I will NOT mind. I will NOT mind this. I will NOT mind being nauseous!" and I kept walking. And I did not mind. I was nauseous, but I could ignore it, and I got through the walk, fiercely refusing to let the nausea get under my skin.
So I am embarked on a new journey of not minding, and it's a totally new adventure. In many ways, the drama of diagnosis, the excitement of massive change, the incredible challenge of facing such momentous news and incorporating it into my life suited me better. My natural dramatic flair kicked in an allowed me to transform the nightmare into adventure. Crisis has always brought out the best in me. But this long slow, boring siege of feeling like crap all the time, is actually the deeper challenge. Not surprising.
So, now I see the enemy. In fact, I have fallen before it, lain for a few days prostrate and miserable. Last night, I realized that this less exciting, far more threatening monster of despair and depression, the death of a thousand cuts, is the real battle. How to be constantly nauseous and remain cheerful, hopeful, powerful? This will clearly take a metal toughness and discipline nothing else in my life has required. Here is where I will find out what I am made of.
So the game plan is this...rigid discipline with affirmations, gratitude journal, blogging, meditation, and all the things that keep me whole. Discipline of mind to turn my attention away from negative thoughts. Scheduling time to interact with people ( avoiding group events that brought me a virus last week I did not need added to the mix), to sing, to exercise, to laugh every day.
Finally, I can get my curious mind interested in this process. What is it like to become a person not defined by how I feel? I need to be connected to a sense of purpose that goes beyond chow I feel right now. I need to keep my reasons for surviving this in front of me at all times. I need to tap into something greater than how I feel right now to keep me going. All the time, not some of the time. How strange it will be. I am looking forward to finding out.
Friday, November 11, 2011
Bald chick with attitude!
My hair is gone. It started falling out slowly in the past few days. I sang last night with all my hair. That was awesome. The voice is a little rough from the chemo, but I sang my heart out and had the feeling of being more truly relaxed and present on stage than ever. A true bucket list item.
Today, I had another chemo treatment, went to a lunch meeting, got my nails done and had my head shaved. I thought I would wait longer and, suddenly, I was ready. My regular hairdresser buzzed it very close. But it looked really sad and awful - 5 oclock shadow on my head. Yuck! Then the salon owner, with no appointment, spend a full hour painstakingly straight-razoring my head. He refused to charge me, even though two other clients had to wait. As I was leaving, he said "You have the perfect face for this. Don't wear any wig or scarf, let is get a tiny bit tan and you will be beautiful just like this." I hadn't brought anything to cover my head, so my first step was to walk to the car, head high and totally bald!
I got home and tried on a few of the scarves I bought. I lso took them off and stared into the mirror at this strange apparation. My round Irish head - no longer distorted into an oval by clever hair styling. My ears that stick out slightly, giving me a slightly elfin look. I look like a Bowery street fighter with pretty eyes - quite a look.
We are all different, as we wrap ourselves around the loss of hair thing. For me, the scarves made me feel ill, pathetic and ugly. I started to wonder if I could really own this bald look entirely, covering up for warmth but not disguise. I had always secretly wondered if I'd have the nerve to be that bald chick with attitude. And, guess what? Here she is.
My son says I look intimidating, a skinhead about to kill cancer...and its family. He also said I look transcendant, which is how I feel. Sort of a cross between UFC fighter and the dalai lama. Thanks to those of you I sent the photo to who could look beyond strangeness and see the beauty. I feel powerful.
Today, I had another chemo treatment, went to a lunch meeting, got my nails done and had my head shaved. I thought I would wait longer and, suddenly, I was ready. My regular hairdresser buzzed it very close. But it looked really sad and awful - 5 oclock shadow on my head. Yuck! Then the salon owner, with no appointment, spend a full hour painstakingly straight-razoring my head. He refused to charge me, even though two other clients had to wait. As I was leaving, he said "You have the perfect face for this. Don't wear any wig or scarf, let is get a tiny bit tan and you will be beautiful just like this." I hadn't brought anything to cover my head, so my first step was to walk to the car, head high and totally bald!
I got home and tried on a few of the scarves I bought. I lso took them off and stared into the mirror at this strange apparation. My round Irish head - no longer distorted into an oval by clever hair styling. My ears that stick out slightly, giving me a slightly elfin look. I look like a Bowery street fighter with pretty eyes - quite a look.
We are all different, as we wrap ourselves around the loss of hair thing. For me, the scarves made me feel ill, pathetic and ugly. I started to wonder if I could really own this bald look entirely, covering up for warmth but not disguise. I had always secretly wondered if I'd have the nerve to be that bald chick with attitude. And, guess what? Here she is.
My son says I look intimidating, a skinhead about to kill cancer...and its family. He also said I look transcendant, which is how I feel. Sort of a cross between UFC fighter and the dalai lama. Thanks to those of you I sent the photo to who could look beyond strangeness and see the beauty. I feel powerful.
Tuesday, November 8, 2011
Bucket Lists...
Most of us have seen The Bucket List by now and understand the concept. Two ill guys challenge each other to complete their list of "must-have" experiences before they die. I liked the movie but never really loved the concept. Really? Turning your life into a list of things to do? What gets put on, what doesn't? What counts? Is our life the sum total of the hydrants we manage to pee on?
Don't get me wrong, I think that setting goals and achieving them can give structure and a sense of meaning to our lives. We are designed for forward motion, for making things happen, getting things done. It's healthy and good to delay gratification in order to make bigger, more dramatic things happen. Heck, I'm a coach, I help people do that stuff all the time.
It's just that I've taken the bucket list idea in two new directions. First, I started reporting each new cancer experience to my son as "one more for the bucket list"' to make him laugh, which worked, to make me laugh, which also worked, and to experience the surge of empowerment black humor gives when we seem to have lost control of all else. My bucket list now has checks next to things like "MRI Biopsy" and "shop for wigs and headscarves"! I figure, it's sometimes more efficient to regard the things life sends you as adventures, than to put out the time and money to have real ones!
Which brings me to my second new spin on the concept. Rather than create and follow a list of specific goals, my aim is to turn my entire life into a peak experience by simply being there when it happens. By there, I mean fully present in the moment I am living, awake to and aware of what is happening without the endless distraction of my analytical mind commenting, projecting into to the future, worrying about the past. A kind of zen bucket list made up of many tiny moments of awareness and perfection. NB: I have managed to sustain this state almost never at this point! That's why it's a bucket list!
Enjoy your day and, since many of you have asked, PLEASE share this blog with anyone on the planet whom you think it might interest or help. Going viral is the best revenge!
Much Love, Colleen
Don't get me wrong, I think that setting goals and achieving them can give structure and a sense of meaning to our lives. We are designed for forward motion, for making things happen, getting things done. It's healthy and good to delay gratification in order to make bigger, more dramatic things happen. Heck, I'm a coach, I help people do that stuff all the time.
It's just that I've taken the bucket list idea in two new directions. First, I started reporting each new cancer experience to my son as "one more for the bucket list"' to make him laugh, which worked, to make me laugh, which also worked, and to experience the surge of empowerment black humor gives when we seem to have lost control of all else. My bucket list now has checks next to things like "MRI Biopsy" and "shop for wigs and headscarves"! I figure, it's sometimes more efficient to regard the things life sends you as adventures, than to put out the time and money to have real ones!
Which brings me to my second new spin on the concept. Rather than create and follow a list of specific goals, my aim is to turn my entire life into a peak experience by simply being there when it happens. By there, I mean fully present in the moment I am living, awake to and aware of what is happening without the endless distraction of my analytical mind commenting, projecting into to the future, worrying about the past. A kind of zen bucket list made up of many tiny moments of awareness and perfection. NB: I have managed to sustain this state almost never at this point! That's why it's a bucket list!
Enjoy your day and, since many of you have asked, PLEASE share this blog with anyone on the planet whom you think it might interest or help. Going viral is the best revenge!
Much Love, Colleen
Sunday, November 6, 2011
Birthday gifts
One of the hardest moments so far was during my bone scan. At the time, it was clear I had cancer that had moved beyond local, but we were finding out if it had metastasized into my bones. After getting the IV, the procedure seemed benign, if boring. I lay in the ct-scan tube while it moved slowly up my body.
Just when I thought it was over, the tech came in and asked me to put my arms up over my head and lay them on the table. This, with the lymph node surgery and old shoulder injuries, I could not do. So I raised them as high as I could, about 45 degrees over head and held. This, if you wondered, is definitely a form of torture. Already fatigued, my body started shaking from the exertion and pain.
I started to cry. As my body shook with a few sobs, I realized I was going to distort the film and, through sheer, angry effort, raked back the tears. It hurt more than my arms. They let me out just a few minutes later and it was clear I had been crying. Pissed off, ashamed and holding onto my remaining dignity and self-control, I stared at the floor, wiping my eyes, a picture of suppressed rage and hurt.
The young tech looked at me standing there, hesitated, and then, gently, almost sheepishly, lay a hand on my shoulder for less than a second. It was clear he didn't plan to do this, or even want to. It jus came out of him. Neither of us said a word.
I can still feel that touch, and the way it almost undid me. I did not look at him or thank him. I am doing that now.
So here they are, the yin and yang of the whole experience, the terrible pain and fear, the compassion and love pouring from those around me, the urge to help, to take some small corner of the burden. The desperate desire of my parents, as I would feel it for my children, to please god, let it be me instead. The longing to help, to support, to be there. I have been told "I love you" more times this month than all the years before. And I am happy.
I am not nuts enough to wish this on myself. I don't think it is worth the pain to have the sweetness. Yet, I am deeply grateful they come as a package. The generosity of my friends and family, and the kindness of strangers, Iinked inextricably with this terrible disease. Sweetness and sorrow. Like life.
Tomorrow is my birthday. Please help me celebrate it by finding something sad, scary or angry, and take a moment to find the sweetness in it. There is an opportunity for growth, for compassion, for forgiveness in all adversity. Find it and secretly wish me a happy birthday as you do. I love the thought of many small moments of grace being created or simply recognized, like little sparkles from my Glinda wand. Happy Birthday to me!!!!
Just when I thought it was over, the tech came in and asked me to put my arms up over my head and lay them on the table. This, with the lymph node surgery and old shoulder injuries, I could not do. So I raised them as high as I could, about 45 degrees over head and held. This, if you wondered, is definitely a form of torture. Already fatigued, my body started shaking from the exertion and pain.
I started to cry. As my body shook with a few sobs, I realized I was going to distort the film and, through sheer, angry effort, raked back the tears. It hurt more than my arms. They let me out just a few minutes later and it was clear I had been crying. Pissed off, ashamed and holding onto my remaining dignity and self-control, I stared at the floor, wiping my eyes, a picture of suppressed rage and hurt.
The young tech looked at me standing there, hesitated, and then, gently, almost sheepishly, lay a hand on my shoulder for less than a second. It was clear he didn't plan to do this, or even want to. It jus came out of him. Neither of us said a word.
I can still feel that touch, and the way it almost undid me. I did not look at him or thank him. I am doing that now.
So here they are, the yin and yang of the whole experience, the terrible pain and fear, the compassion and love pouring from those around me, the urge to help, to take some small corner of the burden. The desperate desire of my parents, as I would feel it for my children, to please god, let it be me instead. The longing to help, to support, to be there. I have been told "I love you" more times this month than all the years before. And I am happy.
I am not nuts enough to wish this on myself. I don't think it is worth the pain to have the sweetness. Yet, I am deeply grateful they come as a package. The generosity of my friends and family, and the kindness of strangers, Iinked inextricably with this terrible disease. Sweetness and sorrow. Like life.
Tomorrow is my birthday. Please help me celebrate it by finding something sad, scary or angry, and take a moment to find the sweetness in it. There is an opportunity for growth, for compassion, for forgiveness in all adversity. Find it and secretly wish me a happy birthday as you do. I love the thought of many small moments of grace being created or simply recognized, like little sparkles from my Glinda wand. Happy Birthday to me!!!!
Friday, November 4, 2011
This is a perfect Fall day. I am happier than I have been in many years. I am tired from chemo but my lymph nodes have gone down (that's the response we were looking for but maybe not quite this soon!). But more than that, I am conscious of being blissfully and fully alive in this moment. I have every thing I need. The sky is blue and I am filled with joy. Life is good. I truly enjoy my new, quiet life. I am coaching a few wonderful clients and their companies. I make good food, keep the house neat, catch up with friends, and get better. What's not to love?
Wednesday, November 2, 2011
First adventures in chemoland....
I'm in the back seat of the car, on my way to get a medi port inserted into my chest to avoid the infernal and eternal search for a vein decent enough to stick. Mom and Dad are driving, since I'll be too wigged out on sedatives afterwards to get home safely. The medi port goes right into your jugular vein and even though you still have to get a needle stick, it works every time. I am looking forward to having this done (although not to getting it done!).
Day seven on chemo. When they give you chemo, you get steroids. After a few days, the steroids wear off and that's when you really feel the chemo. I had heard day 3-4 would be the worst. For me, I felt okay those days until the afternoon of day 4. I was talking to my brother Colin and suddenly told him "I am too tired'" hung up the phone and burst into tears. It was so scary to feel as if my life force had been sucked out like undertow. My wise Steve knows to let the storm pass, rubs my back and not say anything until I am calmer. for two full days, I feel like Holy Hell.
So how does chemo feel? It's like I imagine dying might feel, actually. One moment, I have vitality, some feeling of a life force coursing through my veins. The next, I don’t. Too weak to read, too weak to watch a movie, too weak to want to keep my eyes open. And, underneath it all, the cringing dread that I AINT SEEN NOTHING YET. The effects of chemo are cumulative. I feel bad now, but I can actually do all the things I mentioned above, can read, get off the couch, lift my head. I just don't want to. Will I reach a point in this gruesome process in which I really can't?
Modern chemo is all about nausea management, Thank God. They literally give you far more anti-emetics than chemo drugs. One an hour before chemo, another during, then you take those for another 2 days. Then there are the as-needed drugs. They come in two versions...the one that makes you too sleepy to drive, and the one that gives you a headache. I tried the latter. Once. I'd rather be nauseous than have that headache. I've always tended to get nauseated when I am hungry, so that's my weak spot. It's all about the nausea with me. Keeping my stomach full, doing self-hypnosis, and taking the pills. My life.
About 24 hours into the worst of the chemo, I found my new equilibrium. One thing I have observed is that this is not a straight course ahead. Each new development brings its new reactions. It seems I have to keep re-remembering that I can shift my thinking. It's like being knocked off balance and needing to find it again and again in a slightly different orientation. I always told my daughter Margaret that she is a Weeble which wobbles and doesn’t fall down. I think I am more like a Weeble that falls down on its side and lies there for a day before remembering it can get back up again. What can I say? She got better genes. It amazes me that I can keep forgetting my good habits when sucker-punched. But I suddenly started stating my internal mantra of "I am getting well" and find myself back on track.
Friday, October 28, 2011
i wish i could say I slept well the night before chemo started. at around 1 am i finally realized that no amount of relaxation, self-hypnosis or Sedona relasing was going to help me sleep when the problem was the I was STARVING1 Got up and ate and fell right to sleep. Sometimes I am not all that bright!
Speaking of diet, I have changed mine. Vegan diet was great for a detox but the result was more starch and fruit sugar in my diet. No good. The notion that "sugar feeds cancer" is oversimplified, but cancer cells have WAY more glucose receptors than normal cells and I think the evidence that a low-sugar diet and (even more importantly) a low-insulin-producing diet is key to getting and staying better. So I am eating tons of vegetables, lentils and beans, nuts and seeds, organic meats and eggs, lots of olive oil and non-trans fats, avoiding dairy, refined sugars, flour, potatoes, rice and fruit.
So, back to my first day at Camp Chemo (the nurses actually call it that.) It's great that i got the 8 am slot, so there's less time to wait and freak out. Of course, then i wai there. in the lovely waiting room at the beautiful Sloan Kettering campus in Bedminster. And wait with all the other bums unlucky enough to have cancer but lucky ebough to have insurance. When they come to get me, i am brought into cubicle 11. And then begins the fun of finding a nice big vein so they can take bllod and then run the chemo in. This whole process skeeves me out, warming my arm and tapping around, making a fist. Uggh! the first iv didn't hurt at all, which was a relief because it didn't work. they then brought in the big guns - Mary, clearly the IV rock star. She got me - and it stung and burned like crazy but worked! And everyone agreed we get me a medi-port before next time. I have thought this meant not getting stuck - no such luck, but when they stick you, it's 100% successful every time. Woohoo! So that will happen soon.
The anti-nauseal protocol is unbeleivable. you bring in scrip that they have you take an hour before, then they give you three pills, then they give you something in the IV, then I take stuff as needed, another drug 24 hours later, then 2 more over the next few days. Crazy! But i am prone to nasuea and VERY GLAD this is available now.
SO, after all that fuss, they finally can get started, running saline, the anti-emetic, then the chemo. when you are ready for the chemo, the nurse dons a special gown (yikes) and calls for a chemo check. This is the excellent procedure for another nurse to come over and verify that you are you and you are gettign the right drug. I am ALLOVER this, as a business coach I teach systems up the wazoo, and this seems like a REALLY GGOD MOMENT not to make a mistake!
So the chemo runs in and I am drinking tons of water, getting up to pee pink (from the chemo). Then they send me home. I take myslef out to lunch at Narenj for Iranian food - yummy. I have to eat often to minimize nausea - that's me, not their advice. And, by the time I drive home, I can feel IT. The toxic rush, the body's response (something is WRONG here!) So I start my hypnosis techniques to encourage it to go where its needed and NOWHERE esle in my body, and start in on the as-needed anti-nauseals and, for the moment, I am okay.
Last night I slept like a baby, waking up only once to pee and take more anti-nauseals. i woke up feeling actually FINE. Not even nauseous until I started moving around. A moment of bliss. This morning, I feel pretty darned great. They tell me the steroids will wear off today and then next 2-3 will be the toughest in the cycle. Bring it on!!!!
On a final note, THANK YOU to those of you who have said its okay for me not to be positive at all times. I am deeply grateful for that compassion. Rest assured that positive for me does not mean no emotion. On the contrary, I allow myself to be sad, angry, etc. Using my Sedona method techniques, i don't resist the feelings and they pass quickly. Then I turn my attention back to hope and things that make me feel better. I have no intention of suppressing my feelings in order to prove something to the world. Serene and positive, without denial, is the goal, and it's a hell of a lot easier than the opposite.
Love and hugs to all
Colleen
Speaking of diet, I have changed mine. Vegan diet was great for a detox but the result was more starch and fruit sugar in my diet. No good. The notion that "sugar feeds cancer" is oversimplified, but cancer cells have WAY more glucose receptors than normal cells and I think the evidence that a low-sugar diet and (even more importantly) a low-insulin-producing diet is key to getting and staying better. So I am eating tons of vegetables, lentils and beans, nuts and seeds, organic meats and eggs, lots of olive oil and non-trans fats, avoiding dairy, refined sugars, flour, potatoes, rice and fruit.
So, back to my first day at Camp Chemo (the nurses actually call it that.) It's great that i got the 8 am slot, so there's less time to wait and freak out. Of course, then i wai there. in the lovely waiting room at the beautiful Sloan Kettering campus in Bedminster. And wait with all the other bums unlucky enough to have cancer but lucky ebough to have insurance. When they come to get me, i am brought into cubicle 11. And then begins the fun of finding a nice big vein so they can take bllod and then run the chemo in. This whole process skeeves me out, warming my arm and tapping around, making a fist. Uggh! the first iv didn't hurt at all, which was a relief because it didn't work. they then brought in the big guns - Mary, clearly the IV rock star. She got me - and it stung and burned like crazy but worked! And everyone agreed we get me a medi-port before next time. I have thought this meant not getting stuck - no such luck, but when they stick you, it's 100% successful every time. Woohoo! So that will happen soon.
The anti-nauseal protocol is unbeleivable. you bring in scrip that they have you take an hour before, then they give you three pills, then they give you something in the IV, then I take stuff as needed, another drug 24 hours later, then 2 more over the next few days. Crazy! But i am prone to nasuea and VERY GLAD this is available now.
SO, after all that fuss, they finally can get started, running saline, the anti-emetic, then the chemo. when you are ready for the chemo, the nurse dons a special gown (yikes) and calls for a chemo check. This is the excellent procedure for another nurse to come over and verify that you are you and you are gettign the right drug. I am ALLOVER this, as a business coach I teach systems up the wazoo, and this seems like a REALLY GGOD MOMENT not to make a mistake!
So the chemo runs in and I am drinking tons of water, getting up to pee pink (from the chemo). Then they send me home. I take myslef out to lunch at Narenj for Iranian food - yummy. I have to eat often to minimize nausea - that's me, not their advice. And, by the time I drive home, I can feel IT. The toxic rush, the body's response (something is WRONG here!) So I start my hypnosis techniques to encourage it to go where its needed and NOWHERE esle in my body, and start in on the as-needed anti-nauseals and, for the moment, I am okay.
Last night I slept like a baby, waking up only once to pee and take more anti-nauseals. i woke up feeling actually FINE. Not even nauseous until I started moving around. A moment of bliss. This morning, I feel pretty darned great. They tell me the steroids will wear off today and then next 2-3 will be the toughest in the cycle. Bring it on!!!!
On a final note, THANK YOU to those of you who have said its okay for me not to be positive at all times. I am deeply grateful for that compassion. Rest assured that positive for me does not mean no emotion. On the contrary, I allow myself to be sad, angry, etc. Using my Sedona method techniques, i don't resist the feelings and they pass quickly. Then I turn my attention back to hope and things that make me feel better. I have no intention of suppressing my feelings in order to prove something to the world. Serene and positive, without denial, is the goal, and it's a hell of a lot easier than the opposite.
Love and hugs to all
Colleen
Wednesday, October 26, 2011
starting chemo
Tomorrow I start chemo at 8 a.m. It feels great to have the decisions made. They will not stop me from takng vitamins, so more research will need to be done on that. no time for more now - off to rehearsal for cabaret performance in two weeks.
Sunday, October 23, 2011
at long last...the treatment plan
So there has been a bit of radio silence as we cope with the new recommendations from Sloan-Kettering. So here’s the deal. Note, this blog should be skipped by anyone who doesn’t want grim and gory details or to become depressed.
I have what’s called triple-negative breast cancer, which may not be just one thing – but lots of sub-sets of things. It tends to be aggressive and tough-to-treat. It does respond, at least in some cases, to chemotherapy but then tends to spread and recur anyway. Crap news. And it has already spread beyond the local lymph nodes to those in my neck. We already knew this, but it is BAD, BAD, BAD.
My doctor wants to treat me as if I have what’s called Locally Advance Breast Cancer, even though its already beyond strictly local (I have decided to refer to it as suburbanly advanced.) They want to give me Double-Dense AC-T treatment – four sessions, two weeks apart of Adriamycin (Doxorubin) and Cyclophosphamide combined, then 4 sessions two week apart of Taxol (Paclitaxel). So chemo every 2 weeks for 4 months. The day after chemo, you get an immune-boosting drug called Neulasta. This is very effective at boosting immune response and causes bone pain, which sound like a lot of fun. The side effects of all this are grim and terrifying. Highlights include the no-one-avoids it fatigue, nausea (now controlled by a separated anti-emetic regime – thank GOD for that), and other lovely things such as mouth sores, early menopause and permanent heart damage. Of, and did I mention hair loss (who the Hell cares after that list, right?) I mean REALLY!
This enjoyable interlude of 4 months, assuming it works (should see signs in the swollen breast tissue and lymph nodes, and there will be gobs of blood work all along) will be followed by surgery, most likely mastectomy (I am recommending both sides at this point, given the way this cancer just loves to recur, but we shall see.) The radiation.
The doctor is treating me for a cure. If all goes super-well, she thinks there is a chance I could get rid of it permanently. So the official party line is that is what we are all gunning for. Got it?
The major pain and suffering this weekend has been in fighting through whether to start this right away (my vote) or delay as long as I am actually feeling better and stronger, as I am now (Steve’s vote.) I am currently treating myself in the following manner:
1. Following Hoffer vitamin protocol of Vitamin C, Niacin and other supplements
2. Exposing myself naked to the UV light for a few minutes at a time, multil4 times a day, turning myself like a rotisserie chicken to avoid burning or even tanning, in order to maximize Vitamin D production (the day after I started this I got up and worked at 8-hour day after having been practically bedridden until then.)
3. Low-sugar vegan diet (plus 1 organic egg a day)
4. Visualization, meditation, positive thinking and lots and lots of escape reading!
5. Walking, running, dancing and exercize when I can (have only been feeling good enough to do this in past few days.)
I’ve lost over 10 pounds, feel better than I have in a year, and my breast is definitely less swollen and painful than it was. Today, I felt good all day, danced with wild abandon and did leg lifts and crunches to Bob Segar and went out just now and took at run with Steve. A RUN! I did walk some of it, but I ran hard for at least 15 minutes and felt super-strong.
The biggest struggle we are having now is that the Sloan-Kettering folks want me to stop almost all vitamins during treatment, based on the notion that it “interferes with” the chemo. There is actually a raging controversy over this and we are stuck in the middle. Steve and I are impressed by clinical results with over 2000 patients helped over the years in Canada by Abram Hoffer and his colleagues that doubled survival rates by combining the two. There is a clinic in Mexico producing cure rates double those of MSK by combining intravenous vitamin C and chemo, among other things. I may end up there yet (no joke!)
At this point, I don’t know whether to 1. Tell them I’m going to take vitamins anyway 2. Don’t tell them and take the vitamins any way or 3. Follow their advice, knowing I am likely to be killing myself. This is no good. So I am taking the strategy of asking them to provide me with the evidence and explain why they have taken the position they have taken. If they can convince me, I might be willing to try it their way, but I expect an impasse and a fight, which is NOT where I want to be putting my energy right now.
But not to end on a low note, there is much reason to be hopeful. I am strong, young and resourceful and there is no reason not to believe I will be in the group that survives and thrives. Not to mention all the love and support I am getting…so keep the calls and emails and comments on the blog coming!
Love, Colleen
p.s. Join the blog – sign up for a free google account with your regular email address and they will tell you when I post via email.
Monday, October 17, 2011
Fear of the BOOK
Looks like I struck a nerve by threatening to write my “21 Stupid Things To Say to People in Trouble” book in my first post. Of course, this book is likely to be a best-seller, so I am going to have to write it. A friend who has two kids with special needs is collaborating with me…her contributions really add spice. You'd be amazed....We fantasized about leaving the book lying about in conspicuous places when certain people come by, dropping it on people’s porches, etc. In fact, we nearly peed ourselves swapping hurtful stories, transmuting them into something that feeds our feistiness and feelings of superiority. Hey, you wanna criticize me? I've got CANCER, remember? (God, being able to play that high horse card is doing me SOME GOOD these days!)
But, really, really, really, you need to know that the only really bad thing you can say is NOTHING. The cruelest and stupidest response we have when someone is hurting or sick is to run away, using “I didn’t know what to say…” as an excuse for cutting and running. When it comes to sheer hurt, abandonment leaves implying that the disease might be your fault (see The Secret), or that things are worse than they seem (or better than you seem to think they are) in the dust.
So, please, screw up, faux-pas and stumble away - just promise to stick with me. The number and strength of a patient’s relationships correlates with better treatment outcomes. By just being here, you may actually be saving my life. Here, at the the center of an incredible web of support, love and good-wishes that extends, literally, around the globe, I am strong.
And, if you end up in my book anyway, just know I’ll definitely change your name!
Yours, Colleen
Friday, October 14, 2011
Gory details
So many of you have asked, that I wanted to give a quick summary of where I stand with treatment. If this isn't your bag, just skip this posting!
1. Got diagnosis of Invasive Ductal Carcinoma - Stage 3+ that is not fed by Progesterone or Estrogen. Test for whether it is responsive to Herceptin is pending. Herceptin positive is bad = more aggressive but good = can be treated with Herceptin (which is also bad for your heart.) If its non-responsive to all 3, its considered triple negative. Biopsy of lymph nodes under my arm show breast cancer. Lymph nodes in my neck then swelled - not yet biopsied. Breast biopsy shows small mass that has already travelled. Bone scan and CT Scans of body negative.
2. Recommendation of first team was 2 months chemo (doing it ahead is called neojuvant) then mastectomy, then radiation, then 9 months or more of chemo. Adriamycin and Taxotere.
3. 2nd opinion Sloan-Kettering NJ. Surgeon thinks lumpectomy adequate but have to await oncologist. PET Scan shows large lymph nodes in neck (duh!) which are scheduled to be biopsied next Friday - after I meet with the Oncologist on Wednesday.
4. So we are still waiting for SK team to weigh in on the staging and treatment plan. Will let you all know. Thanks for all the wonderful emails and calls!!!!
1. Got diagnosis of Invasive Ductal Carcinoma - Stage 3+ that is not fed by Progesterone or Estrogen. Test for whether it is responsive to Herceptin is pending. Herceptin positive is bad = more aggressive but good = can be treated with Herceptin (which is also bad for your heart.) If its non-responsive to all 3, its considered triple negative. Biopsy of lymph nodes under my arm show breast cancer. Lymph nodes in my neck then swelled - not yet biopsied. Breast biopsy shows small mass that has already travelled. Bone scan and CT Scans of body negative.
2. Recommendation of first team was 2 months chemo (doing it ahead is called neojuvant) then mastectomy, then radiation, then 9 months or more of chemo. Adriamycin and Taxotere.
3. 2nd opinion Sloan-Kettering NJ. Surgeon thinks lumpectomy adequate but have to await oncologist. PET Scan shows large lymph nodes in neck (duh!) which are scheduled to be biopsied next Friday - after I meet with the Oncologist on Wednesday.
4. So we are still waiting for SK team to weigh in on the staging and treatment plan. Will let you all know. Thanks for all the wonderful emails and calls!!!!
Is it okay to pray for strangers?
Last night, three weeks after learning I have cancer, two weeks after learning I have breast cancer, and one week after learning that I have invasive, (probably) triple-negative cancer that is already in my lymph nodes, I was getting my hair done. I joked with Liz about the wisdom of dropping $175 on foils, color and cut when I don’t know when they want to start chemo and it all might end up falling out.
She offered me a free promotional massage and, after I said yes, the owner called me aside. Gently, he reminded me that I can’t because of fear of spreading. He then suggested I come in to let them shave my head right away when I start to lose my hair (this was already my plan.) And he told me something people have started telling me lately, which is that breast cancer is “no big deal” anymore, tough but do-able. This is meant to be reassuring, of course, but it’s certainly not true. In fact, I think it’s going to go into my new book “21 Stupid Things to Say to People in Trouble,” in the chapter “Minimizing Their Pain.” I am collecting, along with tons of incredibly love, support and wisdom from others, a lot of material for the book these days!
So, after all of this, and just because it was TIME, my grief started to roll in on me. Grief comes in waves, and a major Tsunami that has been building under the surface started to crest. Liz came out as I was leaving and gave me a hug. I paid, added the tip and got ready to leave, all the while avoiding making eye contact with the woman behind the counter and obviously struggling not to cry. I could feel that she wanted to say something, but she didn’t. As I turned to leave, I caught her eye and she asked me “Is it okay to pray for strangers?”
All I could do was nod, get to my car and let the flood gates open. Such an odd question, isn’t it? She was, in effect, asking my permission to care about me, even though she doesn’t know me. Who would need permission for that, yet I felt the caring and humility, the delicacy, to use an old-fashioned word, in her question. A bit of delicacy and compassion in a vulgar reality-TV world goes a long way when you are holding body and soul together with scotch tape and chewing gum. I am grateful.
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