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!
Tuesday, November 29, 2011
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.
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