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
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